When is Enough, Enough?

by Belle Piazza

I always wondered how a cancer patient comes to the conclusion that they’re ready to decline all further treatment and let the disease take its course. I have a husband and two beautiful children who love me. I have an idyllic life living here in the beautiful northwest. I am surrounded by friends who love me – both near and far. So how – HOW – do you say enough is enough? I’m done. I’m ready to go.

For me this decision was reached at 2 a.m. on a Thursday morning, lying in bed, silently crying, with back and chest pain that meds couldn’t control. I had a thoracentesis earlier in the week and despite my initial impression that this was a minor procedure, it was pretty major for me. Between the side effects I was dealing with from the clinical trial drug and now the aftermath of the thoracentesis, I could barely make it from my bed to the recliner in the living room, where I sat all day watching T.V. and playing on my I-Pad. I wasn’t driving myself anywhere and I had friends taking my kids to and from school and running errands for me. My husband was out of town on business. Despite all the support I was receiving, I felt so alone.

And so it was that long, painful night that I finally let down my guard. I gave myself permission to consider a decision that up until that point I forbid my mind to ponder. I had blocked this thought from my mind the way you’d set up parental controls on your kids T.V. and electronic devices. I just wouldn’t go there. Until that night, when I did. I put others thoughts and opinions off to the side and thought only of myself. What did I want? What was I gaining from living like this? At what point does a person say “enough is enough – I’m done”. And after considering my situation in great length, I decided, at maybe 3 a.m. that morning, that I was done.

Later that morning I got the kids off to school, thanks again to a close friend of mine. I dragged myself out of bed and into the living room where I’d spend the next 12-14 hours sitting in my recliner, thinking about the night before and watching Dr. Phil reruns. I called my friend Carol and asked her if she could come over – I needed to talk. Carol showed up shortly after our phone call and I proceeded to tell her about my decision and how I had come to it. I cried a lot, she cried a little. Carol is a strong woman and I knew I could talk to her about this and I knew she’d support me and understand me and hold me when I cried. Just hearing my voice out loud and receiving Carol’s assurance that it was okay made me feel better.

Later that day I told my kids. I didn’t go into great length. I just told them that I was stopping my participation in the clinical trial and that I wasn’t going to do any more chemo. They understood, the way a 12 and 14-year-old child could understand. We all cried and held each other. I told them this wouldn’t change anything immediately. I told them I might have months, I might have years – we just don’t know. But what I do know is I can’t go on like this. My quality of life was terrible – and I didn’t want to live like this anymore.

My husband got home later that week and I told him. He was angry that I had told the kids without him and that we should have talked about it first. I was angry that he didn’t understand what I was going through. There’s no manual on how to handle these things. I told him I feel as if I’m left to figure all of this out on my own – and that he picks and chooses when to be involved. He was angry that I keep things to myself and don’t involve him. He’s right about that one. We talked and cried and got past it. He talked to the kids and assured them that he would be there to take care of them and that as a family we’ll get through it.

It’s been several weeks and life at home is back to normal – or as normal as things ever are when one parent has a terminal disease. I told my oncologist I wanted to stop treatment but he said since it was the holidays and I was suffering so much from the clinical trial drug that now was not the time to make big decisions like that. He made an appointment for me to see him the second week of January and said we’d talk about it more at that time.

I told those friends who are closest to me so they could tell their children what my kids are going through, and be there to support them. Everyone I told about my decision has surrounded me with love and support in whatever ways they can. I am so blessed to have such caring friends and family in my life.

I’m writing this blog because I know there are others like me trying to figure out when to have these thoughts – these conversations with ourselves, asking when enough is enough. It takes great strength and courage to let down that wall and allow yourself to think about such things. I know this, but I don’t feel strong or courageous. I’m mostly just scared. Quality of life is of the utmost importance to me. I don’t want to live in chronic pain. I don’t want to be a vegetable – moving from bed to recliner and back again. I don’t want to watch others live my life around me – doing all the things I’m unable to do. So how do I exit gracefully with as minimal pain to my friends and family as possible? I can’t say for sure – I’m still figuring this all out. There is no manual – no “Dying for Dummies”.

The first step is to allow yourself to have the conversation – either with yourself alone, as I did, or with your spouse or a close friend. Assure yourself it’s okay to be selfish in this instance. No one else is living the life you are, so no one else can determine when enough is enough. Only you can make this decision. You may come to this decision and then change your mind again – and maybe again. Whatever course you take, whatever decisions you make, remember to show as much love for yourself as you show to those around you. Cancer requires us to make many difficult decisions and declining treatment may be the most difficult of all – since only you can make it.

Sex After Cancer

by Leighann Sturgin

The surgeon who performed my first surgery, a total colectomy and left oophorectomy, had no personality. He was always very serious and didn’t fill me with any warm fuzzy feelings. I was lying on the operating table, in the cold, stark white, sterile OR when Dr. No-Personality came in the room and asked if I had any last questions before the surgery. “Yes” I said, “One question; How long do I have to wait to have anal sex after surgery?” Yes, I actually said that! I just wanted to see what stiff, Dr. No-Personality would say, and break the tension and alleviate my anxiety. The entire OR burst out in laughter, except for him. He made an “Ahhhhh” noise, backed away and rushed out. The room erupted into laughter again and one of the nurses leaned over and whispered in my ear “He is a born again Christian.” I whispered back, “So am I.”

IT WAS A JOKE! Having Ulcerative Colitis since I was a teenager, I dealt with a lot of diarrhea and abdominal pain. Anal sex isn’t something I ever considered or desired anyway. That is what made it funny to me! Not to mention the staples involved in the anastomosis.

Six subsequent major abdominal surgeries (different surgeon) followed including a hysterectomy, splenectomy, 2 HIPECs, nephrectomy and one to remove a loop of small bowel that was causing an obstruction, after each one, I always asked “How long do I have to wait to have sex with my husband?” Every time his answer was the same “at least 6 weeks depending on how you feel.

During my first HIPEC surgery when cancer was scraped from my bladder, my right ureter was inadvertently damaged so my surgeon placed a ureteral stent. They followed that up with 8 weeks of radiation on my bladder. Unfortunately the radiation went through my vagina causing permanent damage. The ureteral stent was changed every 3 months for 7 years until I had a right nephrectomy in 2012. The stent was a little piece of hell on earth. It hurt EVERY day. It made just peeing hurt let alone having sex.

I have an ileostomy, a giant scar, and radiation damage to my vagina. I’m underweight. The hysterectomy induced menopause so I am dry in places that used to be wet and wet in places that used to be dry. I have a Hickman catheter sticking out of my chest, to which I hook up a 2.3L bag of IV fluids for 10 hours every night. Stop and think about that for a second. Think about the size and weight of a 2 liter bottle of Coke. I hook that up to a tube sticking out of my chest and sleep with that every night…..very romantic.

Sometimes I’m amazed my husband still wants to have sex with me. With all my crap he acts like nothing has changed. Amazingly, he still finds me very attractive and desirable. Part of my brain thinks, how could he still want me? But another part thinks if all this stuff happened to him it wouldn’t have changed the way I feel about him. Sometimes I find his relentless pursuit of getting my clothes off annoying but then again if he didn’t want me that would make me feel terrible too. I guess that puts him in a lose-lose situation.

Here is a little secret I think many women forget; men need to be wanted. When wives have sex out of obligation it’s not the same to their husbands as being wanted or pursued. I’m sure they’ll take the obligatory sex but they also want us to go after them. I want to share one technique that helped us during treatment and all the years of painful stents. When I noticed I was avoiding any physical contact included hugging and kissing him when he came home from work because I didn’t want to encourage him then have to turn him down, I placed a 6 sided die on the nightstand next to our bed. I told him each side on the dice represented how far I was willing to go each day from 1- “hug and cuddle me but I hurt too much to go any further.” 2- “I want to touch you but I don’t want you to touch me”. And so forth all the way up to 6- “It’s on baby, I’m going to rock your world.” Of course I controlled the die and there was only one because my husbands would always be on 6 . This helped us a lot at the time. I didn’t have to worry about sending mixed messages or hurting his feelings and he didn’t feel rejected time after time. We did this because we aren’t exactly great with communication. You can set your own scale and what each number on the die means for you and your spouse.

Sex is a little more complicated for me now. Without the stent, I’m not in major pain every day anymore. I’m still on TPN every night, still dealing with body issues and I’m 40 now. I want to want to have sex with my husband but I usually don’t and I’m sad about that. I’m sad for me and for him. When is Viagra for women going to be available in the US!? Once it is, will a magic pill fix all my problems?

According to the Mayo Clinic:

* Many women find that the stresses of daily life deplete their desire for sex.

* Highs and lows in sexual desire may coincide with the beginning or end of a relationship or major life changes, such as pregnancy or menopause.

* For some women, orgasm can be elusive — causing concerns or preoccupations that lead to a loss of interest in sex.

* Desire is often connected to a woman’s sense of intimacy with her partner, as well her past experiences. Over time, psychological troubles can contribute to biological problems and vice versa.

* Some chronic conditions can alter a woman’s sexual-response cycle — causing changes in arousal or orgasmic response.

I check every one of those boxes, it’s no wonder I feel the way I do. Am I alone?

Lost and Found

by Belle Piazza

It’s funny the things you remember when you have cancer and the things you don’t. I distinctly remember the day before my colonoscopy. I was mowing our lawn on our riding lawnmower. It was a beautiful sunny fall day and I was over by the dog run as I thought to myself, “there will be life before my colonoscopy and there will be life after my colonoscopy – but it will never be the same”. I don’t know why I thought that. When I was driving down to Portland, a week or so after my scope, to have a rectal ultra sound done to help determine if I had lymph node involvement, I remember telling my friend Gloria, who was driving, “if this kills me, I’ll be more surprised than anyone!”. She encouraged me, being a nurse for close to 30 years, and told me how important positive thinking was.

I don’t know if positive thinking has helped me or not. It didn’t stop the cancer from recurring after my initial treatment and it never gave me normal bowel function again, leaving me with a permanent colostomy. Overall I’d say my cancer journey has been a roller coaster ride, with highs like the Rocky Mountains and lows like the deep blue sea.

Nearing the end of my journey, meaning the cancer is growing and no longer responding to approved chemo treatments, I find myself once again in a place I never anticipated being. Once the cancer returned I suspected it would be a matter of time before I considered clinical trials – so I’m not implying that being in a clinical trial is any big surprise. What surprises me is what I’ve found in this trial – something I’d lost and never expected to find again – I’ve found hope.

I don’t completely understand the science behind the drug I’m taking, but when my research nurse and/or doctor explain it to me, it makes sense. I’m the first human to have ever received this drug. For those who have kids that watch SpongeBob, it makes me think of that episode where SpongeBob says proudly “I’m #1!!!!!”. It’s kind of like that. Logically I tell myself, there is no reason to have hope. Many drugs are tested and fail. This is a phase 1 trial – most don’t make it to phase 2. I know all this – but I still find myself hopeful. Hopeful that the drug will work. Hopeful that I will make medical history. Hopeful that my trial will benefit not just myself but my numerous friends who suffer from this terrible disease.

I can’t help but step back and say why now – after all I’ve been through and all the moments along the way I thought the outcome would be better only to have the rug pulled out from underneath me again and again – why now – have I suddenly become hopeful? And then I shut it down. I step back and linger in that corner of my mind where hope still resides – and I just stay there, because it feels so good. I push aside all logic and negative thoughts. I stay there because it feels good and maybe, just maybe, I’ve learned what our friend and survivor skifletch has said all along; “Can any one of you by worrying add a single hour to your life?”

I don’t know what will come of my participation in the clinical trial. A medical miracle, a scientific breakthrough or absolutely nothing. But I do know today, right now – I’ve found something that I’d thought was lost and would never return again. I’ve found hope. And it feels so good.

Life Goes On

by Janet Klostermann

Many times, one can find irony in life. A couple of weeks ago, the national news media was focused on the 2 year anniversary of Super Storm Sandy and the anger of people affected by it who have not had their lives return to normal yet. This information surprised me because Super Storm Sandy was just a tiny blip on my radar at the time it happened. We were in Dallas and our 28 year old daughter Lauren was unconscious in the Baylor Cancer Hospital, a stage IV colon cancer patient with peritoneal metastasis who had aspirated on her own vomit and had pneumonia as a result. Every half an hour or so another doctor would come in and tell us how bad her situation was, how the cancer was out of control and how she only had days to live. We did hear them the first few times, but it must be how hospice doctors are trained, to keep repeating the message. Lauren did come out of her coma and we were able to bring her back to our home state of Nebraska where she lived another few weeks. We had some more time together before she left us right before Thanksgiving.

Like the people affected by Super Storm Sandy, I don’t feel our lives have returned to normal either. I don’t think I’ll ever feel the same way about Christmas again, as all our family traditions revolved around our two daughters and now we only have one. We’d bake cookies together, decorate together and I’d get the girls matching pjs for Christmas Eve. Our daughter, Jenn, is married, and of course splits her holiday time with her husband’s family, as she should. This leaves us with a big hole in our holiday. We have done a lot of new things though to get through our new life situation. We went to the movies on Christmas Day. We went out of town to Chicago for Mother’s Day. We ate at a restaurant on Thanksgiving. These little changes in celebrating the holidays did help us get through those days.

Since last spring, we’ve had our focus on preparing for the birth of our first grandchild. Our daughter Jenn and her husband Bob were expecting a little girl. We were kept busy with the gender reveal party, three showers, helping to get the nursery ready, shopping for baby. Jenn had a problem-free pregnancy and birth. Little Nora Jane was born the day before her due date and everyone was happy. I took off afternoons to help Jenn and Bob adjust well to being new parents.

Irony steps in again! A couple of Fridays ago, I got a call from my son-in-law that Jenn was home feeding Nora and started gushing blood. She is a smart girl, so she called 911. I picked up my husband and we went to the hospital. I could not allow myself to think of all the bad things this could be! I thought well, I have heard of uncontrolled bleeding leading to hysterectomy, but if that’s what we had to deal with, that wouldn’t be the worst thing in the world. Fortunately, Jenn lives 4 blocks from the University of Nebraska Medical Center (where some of the ebola patients have been successfully treated). She had an ultrasound and an exam and the doctors said it was just her uterus contracting and pushing out all the blood. Everything was fine, but it was a scary experience. And in the back of my mind, I realized the date was October 24, which was 2 years and 1 day after we received the call that Lauren had aspirated and had a 50% chance of surviving the night. I did wonder, is God feeling the need to get my attention?

Little Nora is helping to fill in the hole in our lives. Although she looks like her mom, Jenn (who has brown hair, brown eyes and similar facial expressions), she also (unlike her mother) has long arms, legs, fingers and feet. That is all thanks to her Aunt Lauren. I have no doubt she’ll grow up to be over 6 feet tall, towering over her parents. That’ll be one of Lauren’s legacies! So, to all there other caregivers out there who’ve had to go through some of the worst experiences life can offer. . .please be assured, life does go on!

The Best Defense is Good Insurance

by Andrew Elder

Let’s face it; Chicken vs Egg philosophers have it easy. When thinking about money issues that come along with a cancer diagnosis, it’s hard to pick which emergency topic should come first: Should it be health insurance to cover all those expensive treatments? Should it be life insurance to provide security to those who may be left behind? Should it be fundamental personal financial concepts to get control of income and start putting out those debt fires?

There’s no bad place to start, so I’m going to tackle them in terms of chronological order. Since health insurance is the first stop on the cancer money train, we’ll begin there. Plus it plays to my credentials; unlike some other topics I’ll cover down the road, I’m a certified New York state health insurance professional and work for a large health insurance company in upstate NY.

Insurance Plan is Best Line of Defense

From the moment you first check into your doctor’s office or the hospital where you get The Diagnosis, your health insurance plan is your first line of defense. Good insurance sets up a wall between your finances and the monstrous bills coming your way. By paying insurance premiums, you transfer the financial risk of adverse health conditions to an insurance company. If the bad stuff hits, they pick up (at least some of) the bills. Most Americans working full time have some level of health insurance, usually provided by their employer.

Since March 2010 when it went into effect – and more recently last October of 2013 when the health care Exchanges opened – health care reform (aka: PPACA, Obamacare, ACA) has had a major impact on how health insurance is structured and paid for, and what it covers. Whether you like or hate the politics, there are several changes under ACA that have significant impact on cancer patients and their treatments.

Right off the bat you should know that colonoscopies are considered Preventive Care and as such are covered for FREE on all individual and group commercial health insurance plans, in every state (some private health care cooperatives and employers who self-insure are the exceptions). There are a few wrinkles (like the scope being free, but if polyps are found, there may be a charge for removal), but by and large it’s a great thing.

Beyond that bit of good bum news, I’ll cover the three biggest changes in brief, but believe me there’s much more to know!

Guaranteed Issuance

This somewhat seedy-sounding term simply means that no one can be denied health insurance due to a pre-existing condition. This is HUGE for cancer patients. Think of it like being able to buy home-owner’s insurance after your house burns down. If you already have insurance, this won’t matter, but if you have to buy it post-diagnosis just know that you can. Yes, you’ll likely pay more for the insurance than you would have otherwise, but compared to the guaranteed tens of thousands of dollars in bills you’d get hit with if you were uninsured, this is a phenomenal deal.

Federal Subsidies

If you already have (or will be getting) insurance through your employer, this won’t apply to you. But if you’re buying on your own through the Individual Exchange in your state, you may be entitled to a few financial incentives that help you pay for your insurance and/or your subsequent care.

• Advanced Premium Tax Credit (APTC) is the first. This is most commonly referred to as “premium subsidy”. This is financial assistance that helps pay your monthly insurance premiums. That is, the cost to have insurance, whether you use it or not. Premium subsidies can be used to buy any “level” of plan on the Exchange (there’s “Bronze”, “Silver”, “Gold”, and “Platinum”). It’s based on your gross, taxable household income compared to the Federal Poverty Level: If you make less than $46,680 as a single person or $95,400 as a family of four in 2015 (slightly less this year), you’ll qualify for some level of assistance (see chart for a more complete breakdown). It sounds complicated (and it is), but it all gets calculated automatically when you buy through the Exchange. You can also choose to have the subsidy reduce your monthly premium bill or take it as a tax credit at the end of the year when you file taxes, or a combination of the two.

• Cost Sharing Reductions (CSR) is the second. This is financial assistance that helps you pay your out-of-pocket costs. That is, the cost to use the insurance you’ve already acquired (by paying premiums). It’s less flexible than APTC – you have to buy a “Silver” level plan on the Exchange – and the income limits are even more strict, but you could end up with a Silver plan that covers like a Gold or even Platinum plan, depending on your household income.

ACA Federal Assistance Chart - MVP Health Care

Image source: www.discovermvp.com

No Annual or Lifetime Limits on Care!

Again, an absolutely HUGE benefit. In the old days, health insurance could fade out just when you needed it most. At $200,000 or $400,000 in medical bills in a year – sometimes higher – your health insurance would cut you loose. That’d be bad news if you were fighting cancer. Then, if you reached another even higher threshold (the lifetime limit) at any point – your plan would effectively cease to exist. This change means that you can fight on without fear that your insurance will crap out on you.

Bottom Line – There’s No Reason NOT To Get Health Insurance

The bottom line is there’s no reason not to get health insurance. If you get it after your diagnosis, it can be obscenely expensive, but it’s way less than paying for surgery and chemo out of pocket! If you end up out of work, get coverage through your state’s Exchange where your lower income might well qualify you for financial assistance.

For more info and to get an estimate on what you might pay, check out your state’s Exchange website or start at www.HealthCare.gov, the Federal government’s primary site – now 40% less crashy!!

Good health insurance coverage will go a long way toward keeping you out of bankruptcy during cancer treatment, and toward keeping financial collateral damage from spilling over to your extended family. You can focus on fighting for your life, not fighting your bills.

Scanxiety and Being a Crumb

by Leighann Sturgin

I admit it. I had a little scanxiety about the CT scan. It was a recheck from a PET/CT three months earlier. It seems there’s always something lighting up on my scans; follow-ups are inevitable. A few minutes after I arrived a tech brought me a yummy liter of iodine water to drink; but before he hands it to me, he asks if I’ve had anything to eat or drink in the last 4 hours. No one told me not to eat or drink…well…maybe they did but my Dory brain has trouble remembering little details like that. I had eaten breakfast so I had to reschedule for later in the week.

When I got home there was already a message from an oncology nurse. She said my appointment with the oncologist the following day had to be rescheduled. I called the office back and asked to speak with the nurse but the receptionist wouldn’t let me. She looked up the notes in my chart and told me I’ve been rescheduled to see the doctor a month later but that I still had to come to the office after the scan to receive IV fluids. Why is this the first I’m hearing of needing IV fluids after a scan and why does the receptionist try to pretend to be a nurse? I asked why I needed IV fluids after a scan and if I could run the fluids at home. She said, “the doctor ordered IV fluids.” “Yes, I heard you the first time – are you a nurse?” “No” she said. “Well then; have the nurse call me back.” I said in a very annoyed tone. I’m not proud of my behavior but I’m used to relaying my questions via a nurse not a receptionist.

When the nurse called back she explained that because I only have one kidney and my creatinine was elevated the doctor wanted IV fluids to help flush the iodine through my system. I informed her I wanted to run the IV fluids at home on my own. Something the oncology nurse knew that the receptionist did not is that I have a Hickman catheter which I use every night to infuse TPN at home. I’m positive I don’t need to go to the Oncology office for a liter of normal saline. Thankfully, the doctor agreed.

I arrived a few minutes late for the 2nd attempt at a scan. They brought 2 liters of yummy iodine water out straight away. One of the liters was for a lady who walked in behind me. We got to chatting and I asked her “What are you in for?” as if we were inmates. We had quite a few things in common, including colon cancer and we both have two sons (hers are grown). She gave me some sage advice on raising sons while battling cancer.

Radiology came to take me back for my scan first. I partially disrobed and lay on the scanner board. The CT tech, Kim, had to poke me twice to start an IV for the contrast. Kim and I are on a first name basis; she’s been scanning me for ten years. Kim reminds me I have to go over to Oncology for IV fluids afterwards. I told her that I’m doing them at home. She calls over to confirm with Oncology while I lie there on the board with my pants down around my knees, a bruise in one arm and an IV precariously inserted into a tiny vein in my hand (you know the ones that hurt like a bastard), and waited. Kim finally comes back and says I have to have fluids in the office. Ugh…how annoying! I specifically asked if I could do them at home! Kim said I was welcome to walk over and talk to Oncology as she removed the IV.

Oncology is about 50 feet from Radiology. Janice, the nurse, is waiting for me. Janice takes both of my hands into hers and apologizes repeatedly. She said something like “I was at lunch. There is a note in your chart that says you can run the fluids at home. I don’t know why the person filling in for my break didn’t look in your chart. I’m so sorry.” Apparently, when Kim finally got a hold of a nurse, they just gave a standard answer without looking at my chart. Janice called Kim and explained everything but Radiology was booked for the rest of the afternoon and my appointment time had long since passed. Kim also pointed out my only viable vein was toast and said she would not poke me again that day. If Janice wanted to try for an IV, Kim said she would try to fit me in but I was afraid that would take too long and I had a bus to catch so I had to reschedule again. It takes a lot of mental games to go into a scan appointment a second time where you’re potentially going to learn that the cancer is back AGAIN. To have to reschedule a 3rd time just plain stinks.

On the 3rd attempt, the waiting room was packed so I took my iodine water off to an obscure corner, far away from the crowd. Feeling a little frustrated, I was hoping and praying everything would go well and I could finally get this test done and the docs would see everything and find nothing. Soon after I sat down in a comfy chair around a little table. A disheveled women sat in the chair across the table from me. She ignored the fact that I was reading and started talking to me about how she had just spent the night in the ER. She was also drinking the yummy iodine water. She gave me a lot of details on her health issues. TMI! I was sitting there trying to figure out why she picked me to talk to out of all the people in the waiting room. I really just wanted to be left alone. Then I realized I wasn’t listening to her at all until I heard her say she had been diagnosed with kidney failure the night before in the ER blah, blah, blah. It took a few seconds to sink in but I realized the IV iodine contrast wasn’t going to be good for her failing kidneys and before I could think about what I was saying I heard myself asking why her doctors would order these scans with contrast if she is in kidney failure? She asked me if she should call her doctor. I said yes.

Honestly, she didn’t look well at all and she was sniffling and snorting all her sinus junk. Then it happened…she coughed without any attempt to cover her mouth. I was totally grossed out. I picked up my bottle of iodine water and walked away. I went to the oncology waiting room for the rest of the hour until it was time for my scan. Within minutes my scan was finished and I was walking toward the door. As I neared ‘Cougher’ I noticed someone praying with her. I have no idea if she knew the person or if the lady was just another patient, but I felt like a crumb. All ‘Cougher’ needed was someone to talk to and pray with and I walked away because she didn’t cover her mouth.

She saw me leaving and stopped me to thank me. She had called her doctor, armed with the information I’d given her and they were no longer going to scan her with the IV iodine contrast. She said I probably just saved her another night in the hospital and a lot of grief. I didn’t feel like I helped her. I didn’t want to help her. I felt like I wanted to get away from her as fast as I could. I felt like a crumb.

We are all on this planet together, to care for one another. It was a good reminder to me of Matthew 25:40, when Jesus says, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’ It was so easy for me to get lost in my own frustration and scanxiety and not see an opportunity to show someone the heart of Jesus. Despite my crumbiness, my scans are all clear. I remain cancer free but definitely have some work to do on my attitude. I have a lot to be thankful for and a lot to be forgiven.

Clinical Trial Crossroads

by Belle Piazza

He walks into the room and immediately asks “What’s wrong with your face?” This man can read me like a book. He notices even the smallest of changes. My hair, my face, my appearance in general. No, it’s not my husband (are you kidding me?) or some illicit affair I’m having. It’s my Oncologist. I’ve been seeing him for close to 7 years now. Next to my husband, the longest relationship I’ve had with any man. And today I’m meeting with him to discuss participating in a clinical trial at a different cancer center – which would mean he would no longer be my main point of contact with all things cancer.

You’d think I’d be thrilled at this prospect. The clinical trial, although only a Phase 1 study, had a waiting list of 16 people and only 3 available openings. I was offered, and accepted one of the openings. It’s an immunotherapy trial, which I have a much greater interest in than standard chemotherapy trials. Theoretically the side effects will be less severe and there is a lot of promise in the field of immunotherapy treatments for cancer right now. My husband is beyond happy, thinking there’s a chance at a cure. I warn him that there is still much to be done in this field and this is by no means a shot at a cure; but rather a hope that it will hold the cancer back a little longer until science comes up with something more solid.

It’s not like I have a lot of options. Sure, there are trials going on all over the country. But therein lies the first challenge – the trials are ALL OVER THE COUNTRY. Trying to sort through data bases and make contacts to find out what’s available, where and how to pursue the different options is completely overwhelming to me. I have an edge up over the average patient in that I have friends at both The Colon Club and Fight Colorectal Cancer who are able to sort through these mazes more efficiently than I’ve been able to do and send trials my way they think I may want to consider. I read through the trials and the comments that accompany them and make contacts as best I can. It’s a feeble attempt. Ultimately I opt for a Phase 1 trial my oncologist has recommended at Providence Cancer Center in Portland. Largely because it is an immunotherapy trial and largely because it’s close to home – I won’t have to travel to participate in it.

I took the path of least resistance, it’s true, and I’m okay with that. Many will criticize my decision. It’s easy to pass judgment on others when we forget that we aren’t in their shoes and we haven’t experienced what they have. I have no real knowledge of what the side effects of this drug will do to me. I think to myself, having experienced a good number of the side effects caused by chemo, that I can handle just about anything an immunotherapy drug throws my way. Then the day before I see my oncologist I experience yet another partial blockage, with pain and vomiting that brings me to tears and I remember how horrible it is dealing with any of these side effects.

I know of others who have traveled overseas to seek out treatments not available here in the United States. I can’t even fathom traveling to Seattle; a 3 hour drive from our home. I have friends in Seattle who would house me and drive me to appointments, but I don’t want to be away from my family – it’s mentally, emotionally and physically exhausting for me. And I know that whether I travel 3 hours or 3 days to find a treatment, there’s little hope for a real cure. It’s all a gamble, a shot in the dark.

So why do we bother at all when our prospects are so dim? Sometimes I wonder myself. But then I look into the eyes of my son and daughter as they chatter on about their day at school and I know immediately why I continue to fight. My daughter tells me she was third to the last to finish the half mile run at school. That’s fine I tell her, the important thing is that you tried. I tell myself the same thing – the important thing is I’ve tried. Others may have the energy to do more; but this is all I have. I know my limits and what I can manage. Having lived with cancer for seven years now, I know what I can take on and what is beyond me.

I’ll get the questions, criticisms and suggestions of what I could or should be doing. But I know in my heart that I’m doing all I can and what is right for me. There will always be doubt in my mind and self criticism as well; we all have it. I may even wonder if my outcome would have been different if I’d chosen a different path, a different trial, a different procedure. But I’ll also know that I did the best I could. What really matters to me is that years from now my children will be able to look back and know that I tried.

For today, I’ve made my decision. I’m headed into new and unchartered territory. I’m apprehensive and scared. I can’t say I’m excited because my expectations for the outcome of this trial are conservative and realistic. Some will criticize me even for this – saying if I don’t stay hopeful and optimistic, it will hurt my chances. I don’t see things that way. My oncologist is also realistic and makes a follow up appointment for me in two months just to continue to monitor my progress from the sidelines. This brings me tremendous comfort. I talk to my Palliative Care Oncologist who also supports my decision and understands how important it is for me to continue to see both my primary Oncologist and my Palliative Care Oncologist in addition to the Oncologist who is running the trial.

I was asked by another cancer organization to write a short blog about my experiences in the clinical trial field. I declined. I have no real experience or advice to offer. I feel like I’m flying by the seat of my pants. Someone more qualified should be writing that blog – not me. For all the talk about the importance of clinical trials and our participation in them, they certainly don’t make it easy on patients to understand them or how to make good choices.

After the Battle, Life Remains

by Andrew Elder

Let’s face it; cancer ain’t cheap. Besides threatening to kill you, cancer can potentially devastate your career, disrupt your family and friendships, and generally take over your life. And a lot of that has to do with money. From diagnosis to treatment to recovery, cancer can be a breathtakingly expensive ordeal. But that fact does not mean that a cancer diagnosis is an automatic ticket to the poor house. More importantly, though perhaps harder to hear, a cancer diagnosis does not relieve you of your responsibility to manage your finances well. Win or lose, protecting yourself and your family financially during a cancer battle is vitally important – either to your own future, or the future of loved ones that may be left behind.

I’ll say it up front: I believe in fighting with every resource that can be marshalled. I would never suggest someone skip an avenue of treatment – and put their life at risk – to save money. But understanding and practicing good fundamental personal financial principles is the best defense against the financial upheaval caused by cancer. Yes, you and your family may end up bankrupt or buried in debt no matter what you do. But a solid foundation and good habits during the fight gives you the best chance to avoid that or recover from it and start moving you (and your family) toward recovery. No matter what happens, being prepared financially will give you a better outcome. And no; “being prepared financially” doesn’t mean having a big pile o’ money. It means managing what you have – no matter how much or little that is – wisely and with intention.

The tragic part is that handling money can be far easier than most people think. It can be a small effort in terms of time and energy, but have a massive impact on every other area of treatment and survivorship. I’ve known survivors who simply gave up dealing with their money issues completely after their diagnosis. They stopped saving and budgeting, ignored their debt, and accepted any expense (and its consequences) as justified with little thought. One friend who survived spent years digging his way out of the massive hole he found himself in, setting back retirement and other goals for his and his family’s future. Another friend of mine was the partner of a man who fought like hell, but sadly didn’t survive. After watching his partner die before his eyes, he then had to sell the home their children were raised in to pay medical debts.

Think about it like this: for those in the midst of the battle, how much harder is it to fight through diagnosis and treatment while also dealing with student loan debt, credit card balances, the stress of living paycheck to paycheck, or fights with a spouse or partner over money? And think of the possible outcomes: if a person beats a cancer diagnosis, doesn’t it make sense to learn to limit the financial damage as much as possible so their new lease on life isn’t a literal lease? And should the worst happen, won’t they leave this life more peacefully knowing they’ve done all they can to leave their families financially secure (or at least stable) in the midst of grief and a new reality?

Starting next month, I’ll be digging into some of these specific fundamental financial principles, and looking at the costs of cancer treatment and how to limit their impact on your life. I’ll cover health insurance and how to make it dance to your tune for a change, as well as what your options might be for life insurance (yes, it’s still possible!). And if you’ve already beaten cancer – but feel like you lost the fight financially – I’ll show you how to put a plan in place that will get you out of debt and back toward winning with money as fast as possible. Those of you who were left behind by someone who lost their cancer fight, the same goes for you.

After the battle, life remains. Whether it’s yours, your loved ones, or some combination of both, the best life is the one free of the shadow of cancer. If I can help anyone reading this with that process at all, I’ll be glad that I’m here and able to do it.

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It’s About Forgiveness

by Belle Piazza

Awhile back it was suggested by a friend of mine that I reach out to a friend I had lost touch with many years ago to reconnect. We’d lost touch over something silly, as is often the case, and what I considered one of my closest friends at the time, was no longer a part of my life. The two of us opted to drift apart and as I tend to do, I put it all behind me and moved on. I thought I’d done a pretty good job of dealing with the loss of this friendship until the subject was recently resurrected. And that’s when it hit me. I was still hurt and angry. Very hurt and very angry – and that really surprised me.

It surprises me how we can compartmentalize emotions, box them up and put them high on a shelf in a tiny little closet in a back corner of our minds, never to be seen or heard from again. Until the box falls off the shelf and comes spilling out of that nice orderly place into a clutter of chaos all over our freshly cleansed psyche. Messy I tell you, very messy.

All this unpleasantness upset me. I have enough to deal with – I’m freaking dying a slow death from cancer and now this? Seriously? My emotional quota is completely allocated – I can’t afford to spend unnecessary energy on an old emotional wound that I thought had long since healed. But it hadn’t healed. It had just festered slowly over the years – but never really healed.

Well crap, I thought, I guess I have to deal with it. I figured I had two options. I could reopen the wound and try to heal it – going directly to the source, or I could just open it up – throw some disinfectant on it, let it scar over and put it back in its box in the closet. I chose the latter. That’s right – the latter. I didn’t take the emotional high road and have a bittersweet reunion with an old friend. I let sleeping dogs lie. And you know what? I’m fine with that.

Sometimes I think people have the impression that because we have cancer and we’re going to die that all our affairs – including emotional ones, require closure. That we should tie up all the loose ends with a pretty red bow and leave nothing unsaid. I beg to differ. I’m not going to try to heal this old wound. I’m just going to live with it. I talked to a close friend about it – what happened, how it made me feel and how I realized I’d never truly gotten over it. And I felt better. Did I forgive her? Did I forgive myself? I think I did; I’m pretty sure I did. I just didn’t do it with an emotional reunion or a pretty red bow. It was much quieter and internal than all that.

Earlier this summer a close friend visited me from Phoenix . She had gone through treatment for breast cancer several years prior to my cancer diagnosis. If I reached out to her even once I don’t remember it. Yet she was the first person, when I was diagnosed, to reach out to me – track me down in the hospital and tell me she was there for me – and she understood.

“You’re much more forgiving than I am” I told her. “If you weren’t such a forgiving person, we wouldn’t be here together today”. She just laughed and brushed it off as she always does. “Seriously” I told her “despite all I’ve been through I’m still not as forgiving a person as you’ve always been”. The truth of the matter is I haven’t even come close to mastering the forgive and forget concept. I don’t think I can ever forgive myself for not reaching out to my friend who went through breast cancer.

Cancer doesn’t make us heroes. It presents us with opportunities and challenges us to learn and grow and it’s up to us what to make of them. It resurrects our unfinished business and says “And what are you going to do about it?” as if we had all the answers! It slows us down and dares us to look in the mirror to see what reflects back upon us. It challenges us to forgive ourselves and others. And how does that differ from someone who isn’t looking death in the face? Simply put – for those of us with terminal cancer – we have a time limit in which to respond to these challenges, and we know it.

What I’d really like to learn is how to forgive myself. Although my friend who suffered breast cancer forgave me many years ago, I have yet to forgive myself. And there have been other things I’ve said or done over the years that hurt people – mostly little things, but hurtful nonetheless. I wish I could take back some of the things I said and/or did, but that ship has sailed. In many instances I’ve tried to make amends, but some incidents were in passing – people I have no way of tracking down to apologize to. Some were complete strangers. The only option left is to forgive myself and release that negative energy, but I just haven’t been able to. Not in my heart. Logically it seems simple “you are forgiven!”; but I don’t feel forgiven. I just feel badly for having hurt another person.

I still have unfinished business – forgiving others, forgiving myself. I haven’t conquered either. With limited time, I’m trying to focus on forgiving myself, because I think if I can master that, then everything else should fall into place like a stack of dominos. Or at least that’s my plan. And if I never achieve my desired results, well, it is what it is. I’m human. I’m not Mother Theresa or the Dalai Llama.

I hope each of you will allow yourselves some slack and not succumb to the societal pressures of “forgive and forget” and “leave nothing unsaid”. It sounds so simple; like 5th grade math. But have you ever tried helping your kids with their 5th grade math? Not always so simple, trust me. Don’t get me wrong – there is nothing that will destroy you faster than harboring ill will and anger. It needs to be released. There is nothing more healing than forgiveness – of yourself and others. So while I’ll continue to work on forgiving myself and others; there will be times I simply accept what is and keep moving forward. And I’m okay with that.

Faith or Fear?

by Leighann Sturgin

I had been home from the hospital for two days following my 5th major surgery. I still had a drain tube in my abdomen. I guess I was a little too active too soon. Somehow, the drain tube poked a hole through my stomach. I was bleeding internally. I knew something was wrong. Once again it was the middle of the night. My husband and sons were sound asleep. I noticed the drain bulb full of blood. My ostomy had blood in it. I peed blood. I felt like I was going to pass out walking the 8’ from my bed to the bathroom. I waited all night, bleeding from almost every hole in my body, for my husband to wake up in the morning. I told him I didn’t feel well and proceeded to vomit a ¾ of a liter of blood into the graduated cylinder next to my bed. All blood. My husband continued getting ready for work and the kids ready for school. He tells me, “I’m going to drop the kids off at school and head to work. Call me if you need me.” I was thinking, isn’t it obvious that I need you now? But I didn’t want to say anything…I didn’t want to be a burden. Why is it so hard for me to ask for help?

My husband left, dropped the kids off and hadn’t even made it to work when I called him and asked him to come back to get me and take me to the ER. He returned. I told him I didn’t think I could make it on my own it to the car. He’d hurt his back the week before. My 6’9” 250 lb. hulk of a husband couldn’t carry me. I sat on the edge of my bed trying to muster the courage for the 50’ trip to the car. I was pretending to be ‘The Little Engine That Could’ sitting there telling myself ‘I can do it. I can do it. I have to make it.’ I failed. I made it to the front door and passed out in his arms. I started waking up about 20 minutes later. Yes, 20 minutes! I heard Todd on the phone talking to dispatch, saying “They should be here by now. Why aren’t they here yet?”

I was lying on the floor of the entryway. It was a cold January morning. I was freezing. My poor husband had to stand over my pale, lifeless body and call 911 because I was too pigheaded to ask for help when I should have hours earlier. When EMS finally arrived I heard them ask Todd “Is she always this pale?” “Pale, but not this pale.” He answered. Then they asked a series of questions about my medical history and any medications I was taking. Todd had asked me several times in the previous weeks to make a list of medications for him but I didn’t. I was too tired and the list was so long and ever changing. I heard them say they were having trouble finding a pulse. I was screaming in my head, “I CAN HEAR YOU, I MUST HAVE A PULSE.” But I was too weak to speak and drifting in and out of consciousness. I was taken to the local hospital with the sirens wailing, and later transferred 150 miles via ambulance to the hospital where I’d have surgery. Todd stayed home with our young sons at my request. My goal was to always keep their schedules as normal as possible. Living 2-3 hours from any other family members, if I couldn’t be there, I wanted Todd to be home with them. I did a lot by myself. I spent several days in the ICU and received several units of blood. My doctors were able to stop the bleeding but it was the scariest experience for both of us. Todd changed that day; I think he began to push me away after that experience. It was too much for him. He either really thought I was going to die right there in front of him or he realized if it wasn’t this day, it could happen any day.

My husband loves to hunt. He lives to hunt. It is a stress reliever for him and it restores his mental sanity, recharges his batteries and makes him happy. He has been going on 1-2 week long hunting trips every year for almost our entire 17 years of marriage. The first time he left me, I didn’t like it at all and I let him know it. The second year, either consciously or subconsciously, he picked a fight with me and was a big jerk weeks before his departure date. When that day came, I was so mad at him; I was glad he left instead of mad that he was gone. The 3rd year, the big jerk did it again but by the 4th year I’d caught on to him and I called him out on it. He never did it again…until he stood over my pale lifeless body and called 911.

He was mean and nasty, but honest about his feelings for the first time since I got sick. A lot of what he said and did was hurtful and some of it was on purpose, but I was glad he wasn’t keeping it all bottled up inside. Some of it was totally justified, like when he told me my IV pump keeps him awake and getting up for work every morning is difficult. If I left the bedroom he would wake up and panic. Most of the time he’d find me asleep on the toilet, but either way it was difficult for him to sleep and the consistent lack of sleep was wearing on him. Some of it was total crap, like when he said I only felt bad when there was somewhere or something he wanted to go or do and I always felt fine if it was something I wanted to do. That was crap and it hurt. I would’ve loved to play in the yard with my boys or go to their soccer or baseball games but I couldn’t be in the sun or far from the bathroom and couldn’t stand for long periods of time. I would’ve liked him to handle things differently. I would’ve preferred to have constructive conversation but we aren’t good at communicating. I let his rant go on for a few months. It was a miserable few months but I had so much guilt over everything I’d put him through. Even though it wasn’t my choice or my fault, I was, nonetheless, the cause of his pain.

The strife and the stress didn’t help my recovery. I had several complications in addition to the gastric bleed, I was in and out of the hospital so many times, my then 5 year old asked me on one of my ‘visits’ home from the hospital “Are you staying here this time or just visiting?” One day, I talked to my husband from the hospital and called him out on it again. I told him he was doing the same thing he used to do before hunting trips. I think he was so afraid of losing me he was pushing me away. It doesn’t make sense but sometimes people who are hurting try to hurt other people before they themselves can get hurt. I told him, “Choose faith or fear, they cannot coexist. Choose faith that God is here, He is in this, He is bigger than cancer. God loves you and our boys even more than I do and He has a plan for all our lives. You will be okay even when I die.” Being the numbers man that he is I knew this would help; I told him “Statistically, 10 out of 10 people die. But until I actually do die, you have to choose between faith or fear. Not just faith that I’ll be healed, but faith that GOD IS BIGGER than cancer and LOVE is bigger than cancer. Or you can choose to live in fear of the pain that you will feel when, someday, I die.” I told him if he wanted to choose fear that I’d be going to my parent’s house when I was released from the hospital because I couldn’t live in the anger and crap that we’d been living in for the past few months. He said “Come home.”

You Have Cancer

By Tina Seymour

“You had cancer. You understand what I’m going through.”
Yes. And also, no.
No, I don’t.
If you’re talking about the big picture of cancer…the finding out…the gut check when it feels like you’ve been kicked in the ribs by a mule. The momentary silence that descends…ears ringing…floor looking a Hell of a lot closer as you grope behind you for something to hold onto so you don’t face plant on it…sinking to your knees at the same time that you have the thought “when was the last time I swept this damn kitchen floor? These are clean jeans I’m wearing.”
Then yes. By all means, a resounding yes.
A thousand times, yes.
But after that initial first few minutes…I have no idea what in the heck was going on in your mind.
Were you thinking about your kids…your parents…your siblings…your work (please tell me that work didn’t cross your mind at that moment).
Ok. I admit it. Work crossed my mind.
It did.
Don’t judge me.
I was starting a new job in 5 days, had just been told I was going to have surgery…and was trying to figure out how to break the news to my brand spanking new boss that I wasn’t going to be there for orientation next Monday.
Hey, those bills still needed to be paid…cancer be damned.
My dogs were crawling all over my lap…and for one heartbreaking moment…I realized that, unlike the multitude of animals I’d had to say goodbye to over the years…they might actually be the ones to mourn me instead of the eventual sad goodbye that I’d thought would one day come.
I don’t have kids…and the thought of that…not having heirs or legacies to carry on in my stead and give all the crap I’d accumulated over the years…was sobering.
I looked around me at all that CRAP…and realized…I’d wasted half my life chasing degrees…things…stuff.
And when I finally got to the point where I should be enjoying it…I find out that my time may have run out.
I don’t know who you called first…or if you even called anyone that first hour after you heard the phrase that would forever change the way you looked at…well…everything.
Did you walk to the bathroom…look in the mirror…and think about the future?
Or did you think of the past…of missed opportunities…lost chances to spend with loved ones…risks you didn’t take because you were too afraid of the consequences if you failed?
Did you realize just how crazy you’d been to be so damned AFRAID your whole life?
Or did you see the news of your diagnosis as a culmination of those fears?
Yes, I had cancer. I had surgery. I had a long, slow recovery that has forever left me with scars.
And now, now I hear that you are taking the first steps of a journey that I am many miles along.
My heart hurts for you. There is an aching in my chest for your family, your loved ones, your babies…no matter if those babies are human or fur balls…they are your babies. Your life. Your heart.
You’ve made an indelible impression in the lives of so many people…and for you to vacate that impression…or for even the CHANCE of that happening to be a factor now…
It isn’t fair.
Yes, I had cancer. I once stood in the shoes you are now tentatively stepping into.
I was scared. I was angry. I felt alone. I felt confused.
I felt like I wanted to come out of my skin at times…
I felt restless…wanting to start…to do SOMETHING.
To scream…to run…to stop…to live.
Yes.
I wanted to live.
Only this time, I wanted to live with the knowledge that my time on earth may be cut shorter than I expected. That one morning, I would wake up, make plans for a lunch with friends …the biggest concern of the day being whether or not my hair would fall flat in the 99% humidity before I reached the cool recesses of the air conditioned restaurant…only to have that day, too, cut short by a phone call that carried more weight, more seriousness in it than the innocent ringing of the phone promised.
I wanted to rewind my life and start over…only this time…I wanted to do it with an urgency…a knowledge that I didn’t have that shitload of time to get things done that I’d always assured myself I had.
I wanted to…get things…done.
Amazing that I finally cured my tendency to procrastinate only after I found out I had cancer.
That is my story, my emotions…that curious amalgam of craziness and panic and fear and anger and hysteria that hit within the first five minutes of hearing the news.
And it took six years for me to unravel that small segment of time enough to fully explain it to someone else.
Yes. I had cancer. I am a survivor. I have been living for six years with that nagging, deadly whisper in my ear…that little damn devil sitting on my shoulder…the one who tells me every morning that he may return…and this time…he may not be so generous in his decision to be tamed…to be overcome with the surgeon’s knife.
Yes. You have cancer.
In this, we are the same. But after that first five minutes of learning of our diagnosis…our paths diverged.
I went my way.
You will also go your own way.
Like two jet airplanes veering off…we have to fly this one alone…surrounded by tens of hundreds of others who think that we are on the same journey.
But the worst part of cancer is that no one person’s battle is the same.
We may have the same diagnosis…the same surgery…the same meds…but we are still going to fight different fights.
Yes, I had cancer.
And now, so do you.
But on the other side of all this fear, this emotion, and this pain…in this fight, even though it is the most personal of all personal battles…there is hope.
There is companionship in the fellowship of others who have walked their own paths.
Thousands…hundreds of thousands…have heard those words you and I have heard.
Yes, we have cancer.
We have all made the decision to not curl up in some corner of our home in a fetal position and let the cancer cells that had the NERVE to grow into a threat in our bodies win this one.
Not this day.
Not without one Hell of a fight.
Yes, we have cancer. And while I cannot fight this battle for you, I can offer you my shoulder to lean on…my back to press against yours as we face the same demons surrounding us.
Yes, my friend. As hard as it is to hear…it is just as hard for me to say.
You have cancer.
Now, what are you going to do about it?

The Cancer After Cancer

by Andrew Elder

To paraphrase Nietzsche: that which doesn’t kill you will often leave you flat broke. It’s the side-effect of cancer that often gets overlooked in movies, books and blogs. And it’s a quiet affliction. Even 5Ks or bake sales raising money for families with a cancer diagnosis don’t often say; “Hey, we’re frickin’ BROKE here!” It’s the “after-cancer”, the one that even the cancer you beat can leave behind, the cancer of financial destitution. I’ve been there, and I’ve been through it, and whether you’re dealing with a nasty diagnosis right now or you’re years past your treatment, you can do this. If you’re sucking enough wind to read this post, then you are a survivor right now today. And if you can kick cancer’s ass, then credit cards and medical bills and Bank of America don’t stand a chance!

As for me, my name is Andrew Elder. I’m a resident of upstate NY in the Capital Region area. I’m a seven-year Stage 3c colon cancer survivor and a proud former Colon Club model (Mr. February 2010 baby!). I’m also a singer/songwriter, a personal finance nerd, a happy husband and DIY homeowner, a US Navy veteran, and a rabid food and exercise nut…except for running. Running doesn’t like me.

I often say that considering I didn’t – you know – die, cancer was the best thing that ever happened to me.

Surviving cancer gave me much-needed perspective, and a new philosophy: life is too short to be anything other than free. As I worked my way through surgery and treatment I became profoundly grateful for each day, and realized that the way I’d lived and the choices I’d made had put up cages around me. I was overweight because I ate garbage and sat around too much. I was constantly stressed because I had a boatload of debt, no savings, and no real career. Consequently, I had a lot of self-loathing, no peace, no hope, and no confidence in my ability to change. I’d accepted unhappiness…accepted that life was, well, kind of crappy.

But let me tell you, being given a 25-percent chance to live for the next five years is a fairly effective wake-up call.

That diagnosis shook me out of my inaction. I decided that no matter how many days I had left, I was going to live every one of them as best I could, without regrets. But how can you enjoy life if you hate the way you look and feel; are broke, stressed and frustrated and worst of all, hopeless? That’s not living, that’s just being alive.

With that realization fueling the fire, I created a plan and started taking action.

I’d lost 70 pounds thanks to the “chemo diet,” but I was a gaunt wreck. I began exercising again, starting with slow walks and weak calisthenics, and soon graduating to weight-training, biking and hiking, and swimming (and yes, even a little running).

On the financial/career front, I accepted the fact that I was myself the cause of my problems, but I was also the solution to them. The only thing standing in my way was ignorance, so I started reading every personal finance book I could get my hands on, applying it to my life, then putting that knowledge into action.

I’m not a certified financial professional (yet!) but I’ve learned some hard lessons about money and discovered how to win financially, regardless of how much income you make or how much debt you might have. Physically and financially, I engage in that new-age buzz-phrase; “intentional living”. That’s my key to any turnaround – physical or otherwise – and it’s what I’ll be writing about here. And if what I’ve learned can inspire or inform you in any way, I’m proud to share it.

Until next time, I’ll leave you with a secret: happiness isn’t a result; it’s a choice – and it’s a choice you make every day, regardless of your current circumstances. It’s not about what your life is like today, it’s about what you’re doing today to get where you want to go – physically, financially, relationally, etc. Accept that you can’t control everything or change everything at once; all you can do is all you can do. And if you’re honestly doing all you can each day then smile; you’re already winning!

The Pain in My Back

by Belle Piazza

As I pulled out of my driveway I realized I’d forgotten my cell phone. That’s not going to help me in getting ahold of my chiropractor who I’d just called and left my number with on her answering machine. No time now though; I had just a little under two hours to drop off a load of toys at the 2nd hand store, return a pair of shoes I decided I’d never wear (despite how comfy they felt) and then pick up my son at his Bizarre Foods Cooking Class. If I had time, I’d drop by my Chiropractors office while I was out and see if I could book an appointment for later in the week.

I didn’t have high hopes for said appointment. My back has been hurting for months and is slowly getting worse – just as the tumors have continued to slowly grow and multiply. I’ve always assumed the back pain was the tumors pushing on nerves, but the past few weeks I’ve been wondering if there’s something else causing the pain and perhaps I should check with my chiro.

I dropped off the boxes of toys at the thrift store and returned the shoes. I was making good time. Having taken 2 Vicodin earlier that morning, I didn’t have much inclination to shop as I was feeling a little loopy. My last stop before heading home was the Chiro’s office. Dr. Michelle’s office is small. It’s just her, doing chiropractic and nutritional counseling and her daughter in law who does massages. She’s clearly not in this for the money. She has a true desire to help people and make them feel better. She’s also very chatty, unlike many doctors. I was a little concerned I’d get tied up in conversation and have to cut things short in order to pick up my son on time but I was willing to take that chance considering how much my back hurt. The 2 Vicodin and 2 Ibuprofen I’d taken earlier just wasn’t cutting it.

I walked in and Dr. Michelle, who was just finishing up with a patient, cheerfully greeted me. People take their time in the lesser populated areas of the northwest. Cashiers at the grocery store exchange pleasantries with their customers. People smile and wave to each other as they pass on the streets. Even not so small towns have many pockets that FEEL like a small town. When you’re in a hurry it’s a little frustrating at times, but overall, I love it and it’s one of the reasons I enjoy living here.

Dr. Michelle’s records indicated that it had been a year and a half since she’d last seen me and there had been some big changes. Her new cocker spaniel puppy was now a young dog and causing just as much trouble as ever. She had decided to no longer accept insurance – but charge a flat $25 for each visit. And two months ago, she lost her husband to cancer. Well, that did it for me. Right before her eyes I slowly fell apart as I tried my best to give her my condolences. She profusely apologized, remembering that I have cancer.

“That’s not why I’m upset” I assured her. “I just went through a similar conversation with the owner of the dry cleaner where we take our clothes, who recently lost her husband to cancer.” I shared the story and conversation I had with the dry cleaners wife (in my earlier blog “Take That Cancer!”). Dr. Michelle’s husband went quickly – just 8 short days after he was diagnosed. He didn’t suffer she told me. And he refused all treatment – that’s not what he wanted. The last two days he was pretty much unconscious. She told me she felt his soul leave his body 3 hours prior to his body physically dying. Dr. Michelle is a religious woman and knows in her heart that her husband is in heaven with God and this brings her peace. But she misses him. “I never had to open a door myself. I’d always call him before I left work to let him know I was on my way. It’s the little things I miss.”

Dr. Michelle examined my back and told me I had 3 ribs out of place “No wonder you’re in pain!” she exclaimed. She adjusted me with her little “clickity punch” as I call it. It was a little uncomfortable, but not nearly as painful as what I’ve been living with. I knew that it would take a few days to really notice a difference, but I was hopeful. Dr. Michelle talked to me for some time after the adjustment, until I heard another patient come in. She would have continued to talk as long as she felt it was needed, because that’s the way she is, but I know what it’s like to sit and wait in that waiting room hurting, so I finished up our talk and opened the door for her.

I cried so much during that appointment. It was the pain that’s been gradually yet persistently chipping away at my strength for months. It was learning of another passing from this terrible disease. It was seeing this woman who lost the love of her life too early and left wondering why. It was my own emotions that I’d been bottling up inside me as I’ve observed several of my friends never ending strength and courage show cracks due to recent drama in their own lives; much of it involving cancer – and not just mine. Some help I was to Dr. Michelle.

I tried to assure her that although this was really hard for her, that her husband is better off. I shared with her how hard it is mentally, emotionally and physically to live with this disease. In between sobs and snorts and blowing my nose I tried to make her feel better. This was not one of my finer moments, in fact it was pretty pathetic, but I tried.

Dr. Michelle gave me a big hug good bye and told me she was glad I came in and we had a chance to talk. She said she felt better. I hope she did. As for me, for the first time in months I slept without the assistance of narcotics. While not 100%, I’d say my back is at least 70% better and I’m hoping for more. That’s not to say that the tumors aren’t the cause of these ribs getting pushed out of place. But I’ve found one more tool to deal with that in Dr. Michelle.

I don’t know if it’s because the pain has subsided so greatly or my conversation with Dr. Michelle, but I do feel a little calmer. Do you wonder if her deceased husband put a bug in my head to call her? After all I suffered for months without ever thinking of seeing my chiropractor and then suddenly these last few weeks the idea just sort of came to me. Ironic that while I couldn’t reach her by phone she had an opening at the exact moment I stopped by her office. Financially it’s a tremendous help to just incur a $25 co-pay. Or you could say I’m just a blithering idiot for not thinking of this sooner. All could be said to be true. And the phone I forgot? When I pulled out my checkbook, there was my phone right next to it. So theoretically she could have called me and we could have booked an appointment for a later date. Coincidence? Divine intervention? I don’t know. All I know is that I slept better last night than I have for months. So whether her deceased husband led me to her, or my chemo brain finally woke up and figured it out, it’s a win for me either way.

The Pain in My Back

by Belle Piazza

Dysfunctional Communication

by Leighann Sturgin

My husband is a man of few words. Communicating is a challenge for us. Our communication is a bit dysfunctional. Mosby’s medical dictionary defines ‘Dysfunctional Communication’ as communication that results from inaccurate perceptions, faulty internal filters (personal interpretations or information), and social isolation. This in a nutshell describes my marriage. The other day my husband and I managed to have an actual conversation that wasn’t about our kids, the schedule or what’s for dinner. I shared with him that when he said “Sometimes you are” it was the second most hurtful thing he said to me during my cancer journey. Years ago, during the worst part of our cancer journey, I told him I felt like a burden to him and he admitted, “Sometimes you are.” Those three small words ripped through my heart like Wolverine’s claws through…well anything. The number one most hurtful thing was said by my son, but I will save that story for another day.

It’s one thing to feel like a burden, but it’s truly a horrible feeling to know that you are a burden. Every day for years I awoke and wondered if today is the day it will all be too much for him. It’s not that he’s a big jerk, but how much can one person take? I had no choice. If I wanted to live I had to fight. But he had a choice (or so I thought). He could leave if he wanted. According to studies, the divorce rate for the chronically ill is 75%. And the risk of divorce increases 7 fold if it’s the wife who is diagnosed. Apparently, many people choose to leave their spouse, especially husbands. I can’t imagine how it must feel to watch someone you love suffer so much for so long. We patients are dealing with the physical pain but I think the emotional pain our caregivers deal with is greater. If you think about it, physical pain we only feel once as we experience it, but emotional pain has a way of hurting us over and over again. I remember being in physical pain during treatment. But when I think about it now, I don’t actually feel that pain again. Emotional pain is like a bad burrito, it just keeps coming back up. All the stress, fear, anxiety, anger, sadness comes flooding back and the hurt feels the same again.

Most of the time while I was downplaying how bad I actually was, I thought that he thought I was being a drama queen and exaggerating everything. He never said or did anything to make me feel that way. It was all in my head but to me it was REAL. We NEVER talked about any of it…dysfunctional communication.

Due to the loss of most of my intestines I am dependent on Total Parenteral Nutrition (TPN) which is fluid and nutrition via IV. Minerals such as magnesium, potassium and calcium can become imbalanced easily while on TPN. On one occasion, unbeknownst to me, my magnesium level dropped dangerously low. I had that pins and needles feeling you get when your foot falls asleep all the way up my legs so badly that I couldn’t control my leg muscles and I couldn’t walk. It was around 10 pm. Our two young children were asleep in bed and there was a massive snow storm dumping on us. My husband had to get our 4×4 truck to drag our car out of our long snowy driveway as all 4 of us didn’t fit in the truck. He then had to wake the kids up, carry them to the car and then come back and carry me uphill to the car at the end of the driveway. He drove us to the ER, dropped me off and returned home. Once home he had to put 2 cranky, tired kids back to bed and try to get a few hours of sleep himself. Then he had to get up, get the kids ready and off to daycare before heading to work himself. All the while worrying about me. This is one example of dozens of “fun” times we had. I’m sure every survivor has those kinds of stories when something goes wrong, everything goes wrong. I felt like a burden. Webster defines ‘Burden’ as 1) that which is carried; load. 2) something oppressive or worrisome. I felt like a burden. I was a burden.

We humans have an amazing talent of replaying hurtful words in our minds and letting them hurt us again and again. I am a burden. I am a burden. I told myself this over and over for years. Don’t complain. Don’t tell him, or anyone, how bad you really feel or how much it really hurts. WHAT A LOAD OF CRAP! Cancer is the burden. Not me!

As I said before, my husband, Todd, is a man of few words. He doesn’t show emotion. Sometimes I think he doesn’t have any. He isn’t romantic or sensitive at all. He’s terrible at giving and receiving gifts. However, he is full of integrity, completely loyal, works hard, can fix anything and is extremely adept at finding humor in every situation. So a few days ago, for no particular reason, we had an actual conversation about us. I told him how much his words hurt me and how that hurt developed into resentment and how I still worry if he will support me if I have another recurrence. I reminded him that he has a choice; I don’t. He didn’t even remember saying those three little words that hurt me so deeply. “Sometimes you are.” DIDN’T EVEN REMEMBER! He said he was sorry. He told me “I made my choice 17 years ago when I said ‘for better or worse and in sickness and in health’.” My husband loves me.

Is there someone you resent for something they said or did? For something they didn’t do or say? Are you participating in dysfunctional communication with your caregivers or loved ones? Please tell me my husband and I are not alone.

Take That Cancer!

by Belle Piazza

I walked into the dry cleaner’s to pick up my husbands clean clothes the same way I have dozens of times over the past eight years. I greeted the owner the same as I always have, petted her little dog that loves to chase it’s ball and dumped my husbands dirty clothes on their counter. We exchanged our usual greetings and then she asked me if it would be all right if she asked me a question. “Of course” I said, having a good idea of what was coming.

I was on my way that afternoon to have my 5FU pump disconnected, wearing what I have come to refer to as a “chemo shirt” – a t-shirt with a low neckline so the nurses can easily access my port. The IV line was visible to anyone who saw me, including of course the owner of the dry cleaner.

As her eyes welled up just the slightest bit with tears, she asked me in her broken English, her family all being from Korea, “Is it better having lived?” – and then it was time for me to tear up. As I fought to hold back the tears, I simply told her “It’s really, really hard. It’s easier on my family because they still have me here, but it’s harder on me. For your husband, it was easier on him – having passed so quickly – but it’s harder on you.” “Thank you” she said. “That makes me feel better knowing that. I always wondered”.

I don’t know her name but I know her story. Her husband was diagnosed with colon cancer two years ago. He went through chemo and then surgery – and that’s as far as he got. He died in the hospital from complications following the surgery. I don’t know any further details other than the fact that his family was understandably, completely devastated. His surviving wife knows that I have colorectal cancer. I don’t advertise it, but when I lost my hair from Irinotecan it was kind of obvious something was going on. She asked about my hair and when I told her it was because of the chemo I was on, she shared with me that her husband had just been diagnosed with colon cancer and had started treatment.

As I follow my friends stories on Colon Talk, I can’t help but wonder who will go quickly and who will go slowly. Who will survive and move on with their lives and who will linger on, coming to The Colon Club for the help and support we have to offer them until it’s their time to go – forever. One of our members recently suffered a recurrence in his lungs despite aggressive treatment. He was angry and even mentioned it was all he could do to keep from eating a bullet, but wouldn’t because of his family. That comment hit me hard. Not because I was worried he’d kill himself, I didn’t get that feeling. What hit home was knowing how hard it is to live for years and years with this disease. Wanting to be alive, to live life, to spend more time with your family and friends – but knowing the price you pay to be living with cancer.

A former member of Colon Talk, Gaelen, put it aptly – “living with cancer is a marathon, not a sprint”. That about sums it up. You have to pace yourself. You have to accept what you can do and let what you can’t do go. Having parts of your life taken from you against your will and accepting this doesn’t come easily or quickly – but the sooner you can come to terms with the changes, the quicker you can go about enjoying those things that are still within reach. And of course this is a constantly changing scenario. As time goes on, cancer takes more and more and gives back little. Having lived with cancer for almost seven years, I feel like I’m a bit of an old pro at it. After awhile, it almost becomes a game. How much can I do and still have quality of life? How much can I trick the cancer into letting me do more without paying the price of fatigue, illness, blockages and pain? It’s an ongoing challenge. Some days I win, some days I don’t.

And so we carry on. Spending more precious time with those we love, doing the things we love. For every day I have on this earth, I think of it as one more for me, one less for cancer. I know that cancer will eventually win, but in the interim, I’m giving it a hell of a fight. I know I’m playing a good game.

When I left the dry cleaners that day I asked the owner if it was all right if I gave her a hug and she said yes. I held her and she cried just a little. She’s such a strong woman. She thanked me and said she had no one she could ask these questions of. I assured her she could ask me anything. She seemed to relax just a little and I saw gratitude in her eyes. I made it to the car before I completely fell apart. Yes, it’s easier on the patient when they go quickly. They are released from the pain and suffering of this world. But their families are left to grieve. For those of us who aren’t taken quickly, for whatever reason, we live on with our own challenges and pain. And each of us does our best to live with the cards we’ve been dealt, if for no other reason than to say take that cancer – I’m continuing to thrive despite whatever you throw at me.

I’m Not Cancer’s Bitch!

by Leighann Sturgin

Recently, on Facebook, a sorority sister of mine posted results to a quiz called “How Bitchy are you?” She scored 82%, which put her in the “Mega-Bitch” category. This surprised no one; not even her. I don’t usually participate in those types of quizzes but I did just to see if I was right about myself. I, of course, was right. I scored 14% bitch, which put me in the “Not a bitch at all” category. But the truth is; I’m a recovering bitch. I used to be selfish, self-centered, snobby, impatient, negative, demanding and, well, bitchy. I expected everybody (including coworkers and anyone in the service industry who had the unfortunate opportunity to wait on me) to do their job, all the time, on time and never make mistakes. And everybody, everywhere should ALWAYS stay on their side of the road, use a turn signal appropriately, and go AT LEAST the speed limit. There you have it, a well-rounded definition of bitch in two sentences. Oh, you messed up my order, fine I’ll eat it because I don’t want you to spit in it if I send it back, but I’m not paying for it. Yep, that was me. I know some of you who’ve only known me for the last 10 years might be surprised. But just ask someone, ANYONE, who has known me longer.

So, what changed me? A very unlikely team: Jesus and cancer. I graduated high school and college a bitch. I got a job as a bitch. I got married as a bitch. (Back then my husband used to call me “spunky.” Isn’t he sweet!) Then I found Jesus. I grew up going to church and hearing about him but I didn’t really know him until a few years after I got married. I accepted Jesus as my personal Lord and Savior. I was baptized. I was a baby Christian but I was still a bitch. I gave birth to two sons in two years; still pretty much a bitch. Hey, what can I say? I was learning…slowly. Then, when my youngest son was 2 ½, I lost my job and was diagnosed with stage IV colon cancer all within the same month. My world came to a screeching halt but to my surprise the earth was still spinning. I said to my husband “Huh! Well, whadda know! I’m not the Earth’s axis after all!”
There is nothing like your own mortality to adjust your entire perspective on life. WHAM! Just like that all that little junk that used to drive me nuts didn’t matter AT ALL anymore. Is my house clean? WHO CARES! Those dust bunnies aren’t going to be at my funeral crying that I didn’t spend enough time with them. The guy in front of me driving 10 m.p.h. under the speed limit…it’s okay, better to get there late and safe. Maybe he’s on this way home from chemo or he just visited his wife in the hospital. I wear out my first Bible. It completely falls apart. It’s a good problem to have. I get another one. The waiter takes forever and messes up my order, I don’t say a word. I thank Jesus I can swallow solid food and still have 5 feet of small intestine to digest some of it. I leave a 25% tip. Maybe the waiter is having a bad day. Heck, maybe he has chemo brain.

Whoa, what is happening to me? I’m loving, joyful, peaceful, patient, kind, meek and self-controlled. I was so close to death and yet so full of Hope. I was given Grace and found I was able to give grace. Even though Lynch Syndrome is genetic, I don’t believe it was God’s plan for me to have cancer. I don’t believe he “allowed” it either. In fact, I believe he wept for me, as any loving Father would for his suffering child. I chose not to allow cancer to crush my spirit or my hope. Yeah, I’m not cancers bitch. I’m Jesus’ bitch.

Secrets

by Belle Piazza

“What do you think?” I asked my husband as he put my latest blog down and glanced up at me.
“You spent a lot of time writing that didn’t you?” he replied. Not what I expected nor wanted to hear. He clearly wasn’t impressed. “It’s not what you normally write. You’re dancing all over the place – every paragraph could be a blog”. He was right. I touched on many things but didn’t focus on any one. I’d achieved what I wanted to write about but not what anyone would want to read. I wanted to talk about the logistics of The Colondar photo shoot – but didn’t want to get caught up in the emotion. Mission accomplished if I was looking to write a rather barren and rote blog. But to address the emotional side of the photo shoot? No way. I can’t go there I thought, it’s too personal, too painful, too deep – even for me. My chest tightened and my eyes teared up just at the thought. I can’t go there because I don’t know how to put into words what I’m feeling. I can’t go there because there are too many secrets that can’t be told. The models shared themselves with me, with all of us, in confidence – revealing things that weren’t intended for distribution on social media or a web-site blog. And then it hit me. It wasn’t their secrets I was supposed to write about. It was mine.

Maybe not a ‘real’ secret, but something I haven’t been shouting from the roof tops. Those closest to me know my situation. Tumor growth and spread on my last 3 PET scans. Chemo’s no longer working and no doctor will do surgery or radiation on me other than for palliative efforts. I intentionally scheduled my last PET scan to be done after I returned from the photo shoot. I didn’t want to carry that negative energy with me. The photo shoot is about the 2015 models. For one extended weekend in June, it’s about having an amazing experience that they will cherish for a lifetime. It’s about taking photo’s and it’s about cancer – but it’s about so much more than that. It’s about connecting with people who understand. People who get it – who really, really get it. It’s about celebrating survivorship in a safe environment where secrets can be shared and talked about. It’s about baring their scars and baring their souls. And for me, it’s about telling my Colondar family how much I love them – as it may be my last opportunity to do this in person.

I waited until Saturday night and a little liquid courage to embark on my first conversation. Troy’s been the Graphic Designer for The Colondar from day one. Shortly before agreeing to work on the Colondar, he lost his father to colon cancer. Always being the sort of person to give back, this was a natural fit for him. Natural, but not easy. Troy has known every model that has graced the pages of The Colondar. Each year he updates the slide show presentation honoring those we have lost. As the night got rolling, karaoke was in full swing and everyone was feeling quite fine, I sidled up next to Troy on the arm of the chair he was sitting in. I leaned into him, put my arm around him and did my best to express how much he means to me. I told him I wanted him to know now – while I was still there and able to tell him in person. Before I was a face in the slide show, a memory and a name. I did my best. I wanted nothing left unsaid. Later that evening Troy, myself and Trish joined together to sing “Annie” by John Denver. We were pathetic, but Troy later told me how much it meant to him and we agreed that “Annie” would always be “our song”.

Sunday morning Mark McCarty (the photographer) pulled me aside “lets take some pictures” he said. I adore Mark and he knows it. I’ve always made this clear to him. He’s been taking Colondar photos since the 2nd Colondar – with the 2015 shoot marking 10 years he’s been working with The Colon Club. Like Troy, he knows most, if not all, of the models we have lost. I was wearing no make up, a less than flattering peach colored t-shirt and he asked that I wet down and slick back my hair. “Sometimes I enjoy the process more than the pictures” Mark tells me with a smile. “Sometimes I don’t even look at the pictures!” I sit in front of Mark’s camera and relive my memories from three years ago when I was one of the models. “A little to the right, down now, that’s it”. He goes through his process of finding just the right light, the right angle, to capture the vision he sees in his mind. “Okay we’re done” he tells me as he sits down next to me. I ask to see the pictures. I’m struck by what I see. It hurts. I tear up. He looks up slightly puzzled. “I just see a face that has seen a lot of pain these past few years” I tell him. “Cancer has really taken a toll on me”. I glance briefly at my freakishly blue eyes that stare outward, glowing like an alien. The only sign of fight I have left in me. I don’t like what I see and secretly hope that when we part he’ll delete them. Mark asks me what’s going on with me and I tell him. My time is running short – we just don’t know when. Mark takes it all in stride. He has to. How else could he continue to show up year after year and give his all to each new model that comes before him? He gives me a long deep hug and I know that he knows how much I love him.

Sunday night I stayed up late with my roommate Angie – a former Colondar model who lives in Portland. We’d attended the Grand Ole Opry together, traveled to the shoot together, worked on our writing together and pretty much had the best time we could have possibly hoped for just hanging out. Angie reached out to me about six months previously, so I haven’t known her for long, but I feel so close to her we practically finish each others sentences. “I can’t imagine you not being here” she said. “It’s not that I’m in denial – it’s that you look so healthy”. She’s right. If you didn’t know otherwise, you’d never guess my cancer is slowly and steadily spreading across my body. Angie and I are very close and I can talk to her openly and honestly about my cancer. We’ve done so many times. I didn’t have to tell Angie how much I love her, I do it every time we’re together.

Monday morning the staff sat together at the long tables in the dining room signing thank you cards for each other. As I got to Krista’s I realized I couldn’t write all I wanted on her card – there just wasn’t room. So I sat next to her, put my arm around her, pulled up “I Will Stand By You” by Rascal Flatts on YouTube and said “Krista – this is what you mean to me”. I cried hard and held her as the song played and the words displayed across the screen. I couldn’t help myself. If you haven’t heard this song, look it up and you’ll understand.

By Monday afternoon the staff had left for the airport and the retreat was empty except for Deb (our Chef) and myself. My flight had been delayed until Tuesday. The people, the energy, the magic was gone. Deb drove me to my hotel room in Nashville. When she dropped me off she asked if she could pray for me. She reached for my hand, closed her eyes and said a prayer for us both. I thought about Deb. About Mark and Troy and Krista and Angie. About the 12 new models and the experience we had all just been through. I thought about cancer. I thought about the secrets the models had shared with me and the secret I had withheld from them. I wanted them to be empowered by sharing their secrets and I wanted to protect them from hearing mine. I hoped they had enjoyed – thoroughly enjoyed their weekend. The weekend was about photographs and interviews, sure; but it was about so much more than that. It was about strength, love and perseverance. It was about survivorship and tears and laughter. I thought about Mark’s comment – it’s not about the pictures – it’s about the process. Some secrets aren’t meant to be shared; others are. We need to tell those we love how we feel about them now – while we’re still here. Our love for our friends and family should never be a secret we hide from them.

Not Alone

by Leighann Dunn Sturgin

It was coming up on the 10 year anniversary of my March 2004 diagnosis. I started to wonder if there were any other young, ten year, stage IV colon cancer, Lynch Syndrome, survivors, living life after cancer. I thought the odds of finding someone just like me were pretty slim. For ten years, I felt so isolated and alone in the small, Amish country, Ohio town where I live. Initially, after my diagnosis, I sought out chat rooms (I had never even heard of a blog), but I didn’t find any young people with stage IV colon cancer, trying to raise preschoolers. I didn’t want to talk to people dying; I wanted to talk to people living with this disease. I didn’t find anyone online or in real life and was soon too sick to search anymore. Even when my health became a bit more stable, I didn’t resume the search. I was convinced, I was alone. That is until January 20, 2014, when I typed ‘young, ten year, stage IV colon cancer, Lynch Syndrome, survivors, living life after cancer’ into Google. The first thing I found was Danielle Ripley-Burgess’ Semicolon Stories A Blog About Life After Cancer! I clicked on the ‘My Story’ section and read that she had done a similar search in 2007, found the Colon Club and saw they were accepting applications for young colon cancer survivors to model for a calendar called The Colondar. She applied, was accepted and was Miss October 2009. I clicked on her link to the Colon Club and ordered the 2014 Colondar. I started to read ALL of the Colondar model’s stories. I was flabbergasted! Alive, active, young people, living with this horrible disease; I wasn’t alone. I am not alone! Then I saw the deadline for the 2015 Colondar Model application was January 23, 2014. Wait, What? I have 3 days! The application is lengthy, well maybe it isn’t the application. Perhaps it’s my 10 year, 7 major surgeries, 4 reoccurrences, Short Bowel Syndrome, living on HPN story, that is lengthy. It took me all 3 days to complete the application. I submitted it on the last day possible and never thought I’d be selected. About a month later, I got a phone call from Angie Laroche (Miss September 2011 and Colondar staff member) saying I was chosen. I was so excited; I screamed in her ear. She gave me the dates of the photo shoot and asked if I was available. “Um, whatever else is on my calendar…I’ll cancel.”

When reality set in, I had a brief moment of panic. I actually lost sleep. All I knew was when I was going to the photo shoot, and that I’d be baring my scars and poop bag for the world to see. I didn’t know where the shoot would be or who the other models were. I needed to make arrangements to ship the IV nutrition (HPN), I require nightly. I hadn’t traveled anywhere by myself in more than 10 years. I’m used to being at home all day by myself in sweatpants and cruddy T-shirts! What was I going to wear? What would they want me to wear for the photo shoot? My mind raced with thoughts like “I wish I didn’t just get all my hair cut off.” (I donated 10” of hair to Pantene’s Beautiful Lengths in January for my 40th birthday) and Miss July 2014, Laura McClinton, is GEORGEOUS but I CANNOT wear a bikini.

Everyone in the 2008 Colondar wore blue ribbons; a few were (tastefully) topless. I can’t do topless. I had to take my thoughts captive, redirect my mind; something I’ve had a lot of practice doing. I couldn’t let my mind race with negative, fearful thoughts. I had to choose to let it all go; to trust Krista Waller and her Colondar team. I prayed to God to give me courage, peace, good health. So many times over the last ten years I missed out on events I was really looking forward to attending. The excitement, anxiety and stress would lead to an acute decrease in my health status.

About a month before the shoot I got an email describing the theme and color scheme for the 2015 Colondar 2.0 and I did it again. I panicked! I again thought “I can’t do THAT!” I believe there is an enemy that seeks to kill joy and destroy hope and I refuse to let him, so once again, as I do daily, I turned to my Jesus. My Savior. My Redeemer. My Friend. And I asked for courage, peace and good health and trust in Him and in Krista, Suzie and the rest Colondar team. In June, I got on a plane all by myself and embarked on this journey, to spend a week with 11 other models (and the Colondar staff) I didn’t know, to a remote location, I knew little about…trusting and hoping. Hoping that maybe…just maybe…my story could make a difference and that someone, somewhere wouldn’t feel as alone as I did. BUT what I didn’t expect is the difference those 11 other survivors (and staff members) would make in my life. We 12 have been in CONSTANT contact since we left the retreat. I couldn’t imagine my life without them.

Now don’t get me wrong, I was never really alone. True, I lost a lot of friends since I was diagnosed with cancer. Co-workers went on with their lives without me as I was no longer able to work. Some friends I had to fire because they just pitied me and I hated that. Some couldn’t handle it so they bailed. I, of course, made new friends, some really great people, and my family was with me every step of the way but they just didn’t really understand what this disease feels like. (I hope they NEVER do.)

I don’t feel alone anymore. I have a whole new Colondar family. I feel that I can tell them anything, nothing is off limits, nothing is embarrassing or too disgusting for this family. I love them.

Make Lists

by Belle Piazza

As time goes on and I find myself running short on options for treatment, the question nags in the back of my mind – what should I leave behind for my children. Photo’s, letters, video recorded interviews – all great ideas, but except for the photo’s, very hard to tackle as a project. I’m a project oriented person. I love projects, organizing things and the feeling of accomplishment when a project is finished. But trying to record my thoughts, my advice, my memories, my experiences for the sole purpose of leaving them behind for my children, because I’m slowly dying of cancer, has me left me completely paralyzed.

And so, I’ve decided to start with leaving them advice. I’ve started with advice because it’s a simple project. You see, I only have one piece of advice to leave with my kids. It’s a catch all “this is what you need to do with your life” piece of advice. The advice is – make lists. Don’t over think it, just make lists. The written word is powerful, as in the old saying “the pen is mightier than the sword”. Mental notes are great, but when you put something down in writing it’s like putting a virtual request out to the universe. The stars align, doors open and opportunities are created. I don’t understand it, I only know it to be true – making lists makes things happen.

So with this in mind, make grocery lists and Christmas lists and birthday lists. But that’s just the beginning. Make your lists personal. Make lists of books you want to read, movies you want to watch and songs for your I-Pod. Make lists of restaurants you want to try, foods you want to cook or wines you want to sample. Make a list of fun things you’d like to learn – a hobby, a musical instrument, a foreign language or getting your pilots license. Make lists of places you want to visit and lists of characteristics of places you’d like to visit. Your lists should contain parks down the street, other cities, states and countries. When visiting those places, make lists of everything you want to see and do while you’re there.

Make lists of what your dream job would entail, where you want to live and where you want to work. Make simple and mundane to-do lists of what you want to accomplish today, this week, this month, this year. Make five and ten year plans. When five and ten years have passed make new five and ten year plans. Make a bucket list of everything you want to experience in your lifetime. Revel in the feeling of accomplishment every time you cross an item off your bucket list and then add more things to it.

Make a list of the characteristics you want in a significant other – and make that list long and specific. Make a list of your “deal breakers” and stick to it. Make a list of what you want to improve upon in yourself. Make a list of all the blessings in your life and people you are thankful for. Hold this list close to your heart. Make a list of all the things in your life that have caused you pain and hurt and then make a lovely campfire out back and burn that list.

When you find yourself questioning a relationship, a job or which car to buy – make two lists – one for pros and one for cons. Compare the two lists and in most cases it will become abundantly clear which direction to take. When you realize you have far more on your lists than you could ever possibly imagine accomplishing, add a few more things. And when you have completely exhausted those lists – or are coming close to it – and you will – add more; or better yet, start with a clean, fresh list.

I’ve never had a Bucket List per se, but if I had to make one up today it wouldn’t be long. There are always things I’d like to do, places I’d like to see and definitely people I want to visit one last time. There are events I would like to attend in person – graduations, weddings, first jobs, first homes, the birth of a grandchild. But those just aren’t in the cards I’ve been dealt. We never get everything we want in life, but with lists focused on what we hope for, we have a great shot at achieving much of what we want and many things that we never would have dreamed possible. We need to remember that all things are possible, so when making lists, don’t let the sky be the limit, let it be the beginning. We should never have a completed list – even as our lives come to an end.

When people ask me what they can do for me, I’m going to tell them to make sure they are making lists. I want my surviving friends and family to live full, happy and productive lives, just as I have, and I can’t think of a better way to map that out than to live with constantly changing and evolving lists. Lots of them. So please, don’t over think it – just make lists.

A View from the Chemo Chair

Gwen Hobbs

by Gwen Hobbs

When I was first diagnosed and went to meet with my oncologist, I had just a glimpse of the chemo room and the occupants of the chairs. I shuddered thinking that could be me some day. My impressions were tiny gaunt people who looked like they had been through the ringer. Little did I realize that that room would become almost like a second home. Three years later, I just started my 50th round of chemo – not infusion. Sometimes there are three infusions per round and I haven’t done the math on that. The regimen I’m on now is 5fu, Leucovoran and Irinotecan known commonly as Folfiri. It’s my last chemo combo. If and when this quits working, I’m done.

As I walk in the semi-circular room, I’m greeted with smiles from the chemo nurses who I believe are the angels of cancer treatment. I know they have been for me. They’ve been there for me when I would get the bad news that more tumors have grown, the good news of my son getting married and later having a daughter (I always have the latest pictures of “the Princess”), to getting good news that tumors have either disappeared or shrunk and all the crap in between. I am Facebook friends with several of them as well.
My husband, Gary, is carrying my “chemo bag” which contains just about anything I might need from puzzle books to the Kindle Fire I got for my birthday last year (what a godsend!) to lotion to moisturize with to peanut butter cheese crackers to socks, etc. In addition to my purse, I am also carrying a carafe with hot tea. They have a coffee machine at the center and tea bags but they’re all decaf. Yuck!

If I’m there early enough, I can get a cubicle and I usually like to get the one in the middle so I don’t miss anything going on. Gary pulls the chair out so I will be able to recline and helps me get situated. He then goes and gets himself a cup of coffee, a cup for my tea and some cookies which I slowly nibble during the infusion. I’ve tried eating a meal while being infused and it just doesn’t work for me.

Most of the time, I’ve already had my port accessed because they do my blood draws through it. This time, we couldn’t get the blood to draw so they had to access the one good vein in my left arm. Thank God, it was only one stick and the vein didn’t collapse! However, they had left the port accessed so my chemo nurse just had to hook me up to the saline in anticipation of starting my premeds – Aloxi (for nausea) and 4 mg. of steroids and atropine to prevent the stomach cramps from the Irinotecan.

There’s a lady from my town in the cubicle next to me and we got to visit with her before we both ended up sleeping for a while. On the other side of me is a new person to me but she’s obviously “an old hand” from the banter going back and forth. Bless her heart, she had an allergic reaction to something and scared the bejeebers out of everyone. After a bolus of steroids and Benedryl, she got better. There were two people starting chemo for the first time and the rhythm of the talk between the nurses and the new patients is a familiar one. Not only because I’ve been through the speech, but over the years I’ve heard it many, many times. I always pray that the people they have with them are taking notes because all the information given borders on overload. I’ve seen these nurses go and get lunch for people who don’t have anyone to get them something to eat and they probably paid for it out of their own pockets at times. I’ve heard them counsel patients who just don’t think they can take another infusion.

At the end of each side of the room, there’s an area where three chemo chairs are situated. Later patients usually have to take those. You get to know people’s stories there better than you can if you’re in a cubicle, which some days is a blessing and on others just something I don’t feel up to. I’ve met all kinds of people with all kinds of cancers while sharing the corner spaces. The yard man who was getting his last infusion of Folfox and planning on mowing three lawns after that! The farmer who’s wife so sweetly waited on him while looking shell shocked that they were having to go through this again for the third time. There are people from all walks of life but all of them have a look of hope as they enter the room even when they know the chemo is going to make them sick as a dog or make their hair fall out within 2 weeks.

The noise level when the nurses are getting folks hooked up and exchanging information on how each other are doing, etc. can sometimes be cacophonous but It’s a stark contrast to an hour later when Benadryl and/or Phenergan has been infused in many of the patients. It’s quiet. Really quiet. Reminds me of nap time in school. That seems to last for about an hour and then it’s time to unhook some of the patients and new patients are coming in. And so it goes…the view from the chemo chair – a place of hope and, sometimes, terror. There are more people missing from my survey than I like to think about. I always hope it’s because they’ve won the fight but know in my heart that’s not always the case.

As I get the 5fu bolus before they switch my IV to the pump I’ll take home for my 46 hour infusion, I look around the room and remember how much I missed all this when I was on oral chemo. There’s a comradery with complete strangers who only have one known thing in common. We have cancer and we’re doing everything we can to beat it.

Wendy’s Story – A Mother Lost

by Wendy Touchette

The email link to your January blog post sat in my inbox for many weeks. I have struggled with what to respond, how to respond or even whether I should respond. As I finally reply, although my words may not be quite as elegant or humorous as yours are in your blog posts, I hope my words can be honest and heartfelt and maybe give you food for thought.

Although I am a mom and went through my own cancer journey five years ago, I can only begin to imagine myself in your shoes right now. However, having been a child who lost her mom to cancer many moons ago, I hope sharing a little of my memories and experiences might be helpful to you in some way. I was 4 and my sister was 7 when my mom was diagnosed. To be honest, I have few memories of her illness and subsequent surgical and chemo treatments. It was 1975, cancer treatments were limited (especially in western mass), and people were honestly afraid to talk about it too much. Despite her fight, she lost her battle in the February 1976 at the age of 26. My dad was 29; I was 5; my sister was 7.

Over the years, a menagerie of family – grandparents, great grandparents, aunts and cousins – provided a great deal of love, care and support for us, especially helpful to my dad as he navigated raising daughters on his own. Early on, most people did not share many stories about my mom with me. The exception was great grandma Benoit, whose house was my home away from home on many weekends. I treasured those stories that supplemented and brightened my own limited memory of the short time with my mom in my life. My sister, though only a few years older, had many more and vivid memories and stories of her time with mom. As I grew older, I became more bold and asked questions and requested stories about my mom from those who knew her best. I think they were sometimes afraid that somehow talking about my mom would make me sad. How silly – I craved these stories and loved hearing about the woman who gave me life. I was grateful to everyone who shared.

With the high expectations of dad and family, my sister and I excelled in school and were the first in our extended family to graduate college. But even beyond the academic accomplishments, my sister and I have both grown up to be very level-headed, independent, mature and responsible people. I attribute that to our experiences growing up, including the loss of our mom. Even now, although we are very different people, my sister and I share a very special bond that will never be broken.

You asked “was it worth it” and responded yes, because you had kids. While everyone’s life’s journey is a different experience of people, places, events and circumstances, please know your kids lives are made infinitely richer by the memories that you are giving them and these experiences can be influential in a way that makes them stronger individuals as they grow. I can only hope that your family celebrates your life with your kids not only while you are here on earth, but through stories and memories for their entire lives.

The Joy and the Sorrow of Cancer

Angie Laroche and Belle Piazza

by Belle Piazza

The phone call from my oncologist didn’t surprise me, but still, it was upsetting. The tumor we radiated had shrunk, but there were new tumors – most between my lung and my chest wall. An unusual presentation my oncologist told me. Clearly the chemo cocktail of Irinotecan and Erbitux wasn’t working as this was my 3rd scan in a row with growth. Time to change to one of my last resort chemo’s – FOLFOX. I swore I’d never do Oxaliplatin again. Just goes to show – never say never.

My husband listens to my phone call in silence. I didn’t even tell him about the scan. He never asks. I sat there upset and angry, crying silently. He continued to watch T.V. and play on his I-Pad. When he finally asked if I wanted to talk about the scan, naturally I bit his head off. It’s our dysfunctional way of dealing with my illness. A combination of silence, anger and avoidance. He throws himself into his work and I’ve given up on trying to talk about it with him. Truth be told, if we ever did have any deep, meaningful conversations, I’d see how much this really hurts him and that would be more than I could handle. So I hoard information and mete it out only when absolutely necessary. It’s the only thing left that I have any control over – information. How sick is that?

When it comes down to really difficult decisions, that’s when I get him involved. He’s a master when it comes to research and sorting through the science of it all. And he has a memory like an elephant. Where I fall short, he picks up and vice versa. Where he falls short emotionally, my friends step in. Somehow it all balances in a precarious Cat in the Hat sort of way.

I check into a clinical trial at my cancer center but I don’t qualify because of mutations in my tumor. I’m surprised at how emotionally let down I feel when I hang up the phone. I put a call into another cancer center to check into a similar trial, though if they have the same criteria, I won’t qualify for that one either. I wait for the return phone call, which doesn’t come.

I realize its been three days since I’ve showered. Finding the motivation to shower, fix my hair and get dressed is like me running a marathon – it’s just not happening. I know this is a sign of depression but I’m extremely resistant to going on anti-depressants or even seeing a therapist. We live in a small town – choices are limited. To find a therapist who would really do me some good would require driving – another thing I have no motivation to do. I think if I didn’t have kids I’d start sleeping in the closet, eat nothing but Lucky Charms and live in the dark for the rest of my days. Not good, I know.

I work hard, mentally at least, to find ways to comfort and console myself. Friends reach out to me but I really don’t want to talk. What’s there to say? Not much. I don’t want to talk about my imminent death. I pick up my I-Pad to play Bejeweled, check in on Colon Talk and watch crime show reality TV. That’s my idea of multi-tasking these days. The phone rings but I ignore it. The shower can wait another day.

I try to convince myself that I have to pull myself together, get out of this dark hole and LIVE. I have lots of trips and activities planned for the spring/summer, but in late winter, my social calendar is as dull and boring as the gray, wet weather. And I have no desire to try to fill it. I even cancel some appointments I had lined up. I feel badly for the few friends I hesitantly meet with. I’m not very good company. I’m distracted and lacking focus. I especially avoid my friends who have survived cancer. It’s not that I’m not happy for them; I am. But it’s hard to be happy and celebrate survivorship when I’m thinking of planning my own funeral.

This is it I tell myself – my last months or years of my life. Don’t waste them. You only get to die once – don’t screw it up. People who don’t know they’re going to die have it easier I think to myself. No one is looking to them to make the most of their last days on earth. They don’t have that feeling of impending doom hanging over their heads. They go about their merry ways oblivious to what’s waiting for them around the corner – a safe or a piano about to fall on top of their head or some other random event that will cause their early death. Nope, no pressure at all.

Inevitably something always comes up that forces me to leave the house. Taking the kids to school, of course, but you can do that in your robe and slippers. I’m talking a real motivation – like the Costco mailer with a coupon for Lucky Charms. On this mid March day it’s a luncheon appointment I have with a stage 4 friend who is celebrating 6 years since her original diagnosis. She has been cancer free since surgery. It takes all the energy I have to clean myself up, put on something that doesn’t look like pajama’s and fix my hair. Or maybe I’ll just wear a hat. In any event, I manage to leave the house somewhat put together. If there’s one thing I won’t do it’s cancel on short notice for no good reason. As my car pulls out onto the main road “Brave” by Sara Bareilles comes on the radio. It brings tears to my eyes. I realize I have to pull it together for the sake of my friend. I make a hasty stop into the local florist for a bouquet of blue flowers which they hand select and assemble for me. I tell the florist both of our stories, more tears. The florist sends me off with a complimentary bouquet of daffodils, which I drop off for the widow at my dry cleaners – she lost her husband to colon cancer a little over a year ago.

As I drive to the restaurant I have an epiphany; an Oprah “ah-ha” moment. I suddenly realize it’s okay to be sad for me and happy for my friend at the same time. Sorrow and joy don’t have to be experienced separately and while they may not go together as comfortably as peas and carrots, they can at least coexist on the same dinner plate.

Over blue margarita’s on the patio I share everything with my friend and she listens with a sympathetic ear. I know she has survivors guilt and I know she cares for me deeply. I know if she could change my destiny she would. I tell my friend how happy I am for her – and I mean it. I am honestly thrilled that she has survived. It’s a strange feeling, knowing that you’re not going to survive and the person across the table from you will – despite having a very similar initial diagnosis. But my feelings of joy for her are honest and sincere. My joy for her is as real as the sorrow for myself. It’s a strange emotional house to be in – I’ve never quite felt those feelings simultaneously before today. My lesson learned is that joy and sorrow can be experienced and shared simultaneously; they are not exclusive of each other. Sometimes it’s the simplest things that make the biggest impact in our daily lives.

Dear Colon Cancer

by Jose Baez

Dear Colon Cancer,

For five and half years we have had a turbulent and, at times, violent relationship. You came on strong, skipping all stages and going straight to stage 4 like I was a pushover. It caught me off guard, surrendering to the overwhelming emotional strain of your demand for attention. But with help from family and friends, I started to realize how much stronger I am. With professional help from my oncologist, I fought back against your will to dominate me. Although the seven months struggle took a toll on my body, I got rid of you.

From that point on, I decided to become educated in all your tricks and deceptions. I feared that sometime in the future you would make another run to restart this unhealthy relationship. I prepared my body to be stronger through exercise and better nutrition. I prepared my mind through meditation, faith in God and by surrounding myself with caring people.

A year later you sneaked back into my life. But you were not expecting how quickly I fought back. You expected to drain my resolve and spirit, yet the opposite happened. Your merciless grip was broken once again. Even though the six months left me with more physical and emotional scars, I grew stronger and more determined to keep you out of my life. I resolved not to fear you but to embrace the new me, braver and full of love for living.

You returned only a few months later but with not much determination. I beat you back with an ablation. I felt invincible and elated to know you did not have much left. It was a mistake on my part. Four months later, somehow, you were back in my life but ruthlessly spreading to other parts of my body. I was told there was no cure for me from your grip. Sadly, I will admit that it hurt so much to hear that you were staying in my life forever. I cried and fell into despair. But it was short lived, so do not get your hopes up!

The first three months were hard. I fought back with determination at a great cost. I could not eat or drink and was constantly nauseous. I lost thirty pounds and my will wavered so much that I almost wanted to quit, letting you win. But I stuck to it. After removing the last piece of you from my body, I was free again! The next six months were better. With the help of the hepatic arterial infusion pump, keeping you away was easier.

The following year was a blessing. Not you! Although we searched constantly every three months there were no signs of you. It seemed I overcame the odds and finally convinced you to stay away from me. That year was a period of healing, not only physically but emotionally. With time to reflect, I decided to become a champion against you. I met others who have struggled with you. With them, I have grown emotionally stronger and happier.

So I do owe you some gratitude as weird as it sounds. It’s true that our struggles are our best teachers in life. You taught me to be strong, to trust in others and to appreciate the small stuff in life. Because of you, I have met so many amazing people that have enriched my life. For that, I will always be thankful. But please, do understand that I still do not want you in my life! From this point on, I will do my best to help others fighting against you and to spread the word on how to detect your presence early.

I do not know what my future will bring. You have returned again to challenge my resolve. As we explore my options and create the battle plan against you, I do want you to know that you may one day beat my body but you have lost your fight against my spirit long ago. Understand that this is a one sided relationship now. You do not define who I am. I know who I am!

A Survivor

God and Cancer

by Belle Piazza

We hear it on a semi-regular basis here at The Colon Club. “If there was a God, why would he let me suffer like this?” I don’t have an answer to this question – none of us do. We all struggle to understand the why behind this disease. What strikes me though, is the selfishness of the question. Not that I haven’t asked this very question myself; I have, many times. People who have held fast to their faith their entire lives suddenly question the presence of a higher being when THEY are struck by cancer. We tend to live in our own little bubbles and naively believe that if we live a good life, do good to others, walk a straight and narrow path, eat right and exercise that we will be exempt from all the evils and suffering in the world. God evidently has a different plan. A childhood friend of mine who attended Catholic High School told me that during his years there he was asked to draw a picture of God. He drew a light switch. “People turn the switch on when they need to turn to God” he explained. “And when things are going well for them, they flip the switch off”. Somehow we can come to terms with suffering when it’s the “other person” but when the “other person” is us, our illusions of how the world works are suddenly shattered.

There are those who live a long, healthy and happy life, free from suffering and pain; but I really believe they are the exception to the rule. If you take the time to get to know a person; any random person; and peel back the layers of their life, you’re likely to reveal that at some point, they have endured pain and suffering to one extent or another.

It’s easy to get caught up in our own little micro world and be oblivious to the suffering of others. Some say they can’t think of anything worse than having cancer. I can think of plenty. It’s sick, I suppose, to find comfort in knowing that others suffer more than I do – but sick or not, it helps me to keep things in perspective. A few years back a young family – husband, wife, baby and young child were driving through Oregon. It was winter and they took a side road as a short cut. It was a road that should have been closed. They got stuck in the snow. No one knew they were there. Eventually the husband set out to find help. After a day or so he froze to death. The following day a rescue party found the wife and children. Some nights as I lie in bed trying to sleep, knowing my husband and kids are all safe and warm, I think of this poor family and how horrific this man’s last few hours must have been. As he lay there in the snow, freezing cold, knowing that he was dying, pondering the fate of his family, do you suppose he wondered where God was?

It helps us sort things out when there is someone or something to blame. Victims of violent crimes can blame the perpetrator. Car accident victims can blame the other driver, alcohol or road conditions. I’m sure the father in Oregon blamed himself for ever having turned down that snowy road. Even victims of acts of God such as hurricanes, tsunami’s or fires can blame SOMETHING. With cancer, it hits out of the blue and we want answers – we want to know why – and we very much want to blame someone or something; and sometimes the only thing left to blame is God.

A cancer diagnosis is not without physical pain, but much of it can be managed. I think of burn victims and the 24/7 pain they suffer. When I think of emotional pain I think how fortunate I am to be the one with cancer and not one of my kids. I would live a hundred life times with cancer rather than have to watch one of my children live just one life with it. When I think of the mental challenges cancer presents, I think of people with mental illness and the daily hell many of them face.

The faithful either give thanks to God for curing them or blame God for their suffering. You can’t have it both ways. I lost a young friend to cancer a few years ago. He and his family were (are) devout Christians. Through their entire ordeal they never lost their faith in God or his greater plan. They all suffered, but stayed close to God and each other to get them through. If prayer healed all, it would have healed my friend Adam. It did not, but to this day, his family has not lost their faith.

We all have to come to terms with our circumstances. There is no right or wrong coping mechanism. Cancer strikes all faiths, believers and non-believers equally. When I was first diagnosed and learned that instead of “catching it early” as we had presumed, I was an advanced stage 3, I was completely shell shocked. I had always believed that everything happens for a reason. I believed in karma and I thought I’d lived a good life. I didn’t know what to think so I put my beliefs in a back corner of my mind to sort out later. When I’d made it to almost 3 years post surgery without a recurrence I finally dared to think I might be cured; only to suffer a recurrence at the 3 year mark. Once again the rug had been pulled out from underneath my feet.

Over the years I’ve come no closer to an answer or understanding than I’ve ever had. I still believe that everything happens for a reason. But I also believe that “reason” isn’t necessarily revealed to us in our lifetime. I believe that our human brain isn’t capable of comprehending the ‘real’ big picture. I hold onto these beliefs because I need something to hold onto. I can’t function thinking that all of this is completely random and cruel.

We can’t obsess over all the suffering in the world all the time. It would consume us and drive us crazy, so we need to compartmentalize it and hopefully, in our own small ways, try to make it better to the extent we can. When the suffering hits close to home, as with our own or a loved ones cancer diagnosis, learning to compartmentalize the pain and cope with our situations will challenge us in ways we have never before experienced.

For Adam and his family, faith and trust in God led them through their journey and continues to sustain them after his passing. For me, faith that there is a greater plan, even though I don’t understand it, helps me get through the day. I believe that all roads lead to one, and I believe there are many, many roads to get there. I wrote this blog not in an attempt to sway anyone in one direction or another but to encourage you to look beyond yourself and your own life when trying to understand the question of why. We all want simple, logical, straight forward answers. But when it comes to God and cancer, you’re not going to find them. That doesn’t mean you shouldn’t look. Coming to terms with God, or whatever higher power you do or don’t believe in, is a valuable tool to have. So question your faith, question God, seek out answers. Try to find something to hold onto that will help sustain you through your journey until we are all blessed to learn the real answers to the question of why.

Coping with a Cancer Diagnosis

by Eric Johnson

My first reaction after hearing my cancer diagnosis was, “I need to figure out a good way to kill myself before I become totally debilitated and worthless.” Another strategy that I considered was to become–by design–a rather nasty, disagreeable person who nobody would miss when I was gone. Sick, I know. This was, I should point out, well before I had been staged; before I had my first, baseline CT scan. I was panicking and jumping to conclusions, but being diagnosed with a deadly disease will do that to a person. Or at least, that’s what it did to me.

The surgeon who performed my fateful colonoscopy said it looked like Stage 2 rectal cancer, which he said carried a 75 percent chance of survival. Radiation and chemo went well, with my rectal tumor seeing a complete response—it was gone after the five-week treatment period. The surgery was quick and successful and when the pathology report came back, there was no evidence of lymph node involvement.

Things were looking good for my case, and I started to feel more positive about my life and prospects for the future. I recovered quickly from the low anterior resection that re-arranged my bowels, and I was getting used to the ileostomy, which was due to be reversed in a couple of months in any event. It was summer and I was busy recovering and taking some tentative rides on my bike, while dreaming about a future involving gardening, cutting firewood and cross country skiing.

My recovery and optimistic attitude was encouraging on one level, but it was overshadowed from time to time by the whole idea of being a cancer patient. I didn’t want to be a cancer patient. I desperately didn’t want to be a cancer patient. The designation didn’t fit my self image at all. I’ve always been a health-conscious guy; a fit vegetarian who rarely saw a doctor and never spent a night in the hospital. Now I felt like a vulnerable loser, hanging around the local cancer center—whether I eventually got cured or not.

Meanwhile, I tried to mentally prepare for a potential upgrade to Stage 4. Hey, it happens. As an active member of the Colon Club online message board, I have many friends who started out with a low number and wound up with advanced stage disease. A good percentage of them have died. That’s how this malady tends to play out for far too many of its victims.

This is not to say that I was moping around and otherwise sweating out a turn for the worse. As far as I was concerned, my odds of living a long life were pretty good. What helped a lot was remaining active—both physically and mentally. I kept working fulltime and pursued my passion for bicycling with a new sense of purpose. When I wasn’t recovering from surgery, I was riding my bike and getting stronger in the process. And when I wasn’t riding my bike, I was gardening and/or cutting next winter’s firewood. I told anyone who would listen, “I’m too busy to get sick or die.”

And then, like a nightmare or the plot of some television soap opera, a 7 mm spot turned up on my right lung in a routine follow-up CT scan some 15 months after my original diagnosis. The radiologist checked my previous scan, and discovered a 5 mm spot in the same location that had been missed. Since it had grown in the interim, it was pretty suspect. Unfortunately, it took the better part of that summer, and numerous tests, including a needle biopsy and partially collapsed lung, to positively identify this spot as a metastasis–a malignant tumor. I had suffered mentally the whole summer, waiting on a final verdict. At times, it became nearly unbearable. I tried to clear my mind with exercise and work, and both provided significant—but temporary—relief.

Now, realizing that my odds of survival had been reduced to near zero, I knew I’d had enough. “I can’t live like this,” I told myself with a mixture of despair and defiance. “I can’t continue to live in an atmosphere of fear and dread.”

A friend of mine at the Colon Club, who has since died from her disease, put it plainly. “You have to develop coping skills,” she explained. “You have to come to terms with your new reality.” I was intrigued—inspired. Coping skills, eh? You mean I can learn to build a decent life around this tragedy? What an interesting challenge.

I’ve never been one of those people who believes I’ll be cured somehow, against all odds. I have no religious convictions. (Heck, I’ve never even been indicted). But that doesn’t mean I can’t be optimistic about my future, however long that happens to be. I can look forward to this afternoon’s bike ride. I can cut enough firewood to heat the house next winter, just in case I’m around to see it—and take great pleasure in doing so. And if I’m not around to enjoy the fruits of my labor, someone else will be. I can gain satisfaction from the small things in life—and the big ones. It boils down to attitude. It boils down to living the life I want to live.

I mentioned this idea to my local oncologist, who rarely said much, none of which was ever profound. “If you spend the rest of your life worrying about cancer,” he unexpectedly pointed out, “you’ll be wasting the rest of your life.” I was impressed by that logic, and remain so. As a result, I started to make longer-term plans for my life. Why not?

Still, lingering doubts remained. Concerned about the wisdom of someone in my position taking such a bold approach, I sought a second opinion from my oncologist at Sloan-Kettering in New York City, who has a well-earned reputation for no-nonsense, give-it-to-you-straight counsel. “Doc,” I said, “I’m making longterm plans. Does that make any sense?” She responded, in her typical, curt way, “That’s the only thing that makes any sense.”

I pondered both these statements and incorporated their wisdom into a motto and strategy that continues to guide my thoughts and actions: “Live your life like it’s going to be a long one, because it just might, and then you’ll be glad you did.” This approach has allowed me to take on new, professional responsibilities and pursue opportunities that have been rewarding, both financially and professionally. They’ve helped me recognize the value of my continued existence. Cancer or no cancer, self-validation is a wonderful thing.

My plan is to retire from my current job in five years, when I’m 60, and return to manage the family tree farm in Wisconsin and live out the rest of my days doing what I’ve always wanted to do.

Statistically speaking, this is unlikely to happen. I have active, multiple-recurrent disease, am currently on chemo and in all likelihood, I’ll run out of treatment options at some point, and succumb to the disease. On the other hand, I’m exactly five years out from a Stage 4 diagnosis which is, in and of itself, highly unlikely. So, who knows? I certainly don’t, and I don’t spend a lot of time worrying about it. I’m going with what’s worked so well so far, and hoping for the best. I remain a happy, optimistic individual—something I never imagined after hearing those terrifying words, “You have cancer.”

Eric Johnson is a writer and magazine editor who currently lives in Upstate New York. As of this writing, he is five days away from his five-year anniversary of being diagnosed, and 39 miles away from 10,000 miles logged on his bicycle since that date.

March On!

by Belle Piazza

March has come to be one of my favorite months, for a reason I never anticipated. March is widely recognized as Colorectal Cancer Awareness Month and organizations across the country celebrate it with different awareness and educational events. No doubt I will hear “but lung cancer is important too – and pancreatic, and childhood cancer’s – all cancer’s are important and deserve attention”. To this I could not agree more. But education and awareness of colorectal cancer is especially important to me and not just because it has affected me personally. Colorectal cancer is the #2 leading cause of cancer deaths among men and women in the United States. Lots of people will be diagnosed with this disease – many of whom may have it now and don’t even realize it. Yet it is one of the easiest cancers to prevent through appropriate screenings – i.e. a colonoscopy. For many people, this disease can be completely prevented and I think that’s worth an extra push to get the word out to as many people as possible.

At the Colon Club this month, the Board of Directors is sifting through the 100+ applications they received for the 2015 Colondar. Applicants will be notified no later than Feb. 23, either way, and the 13 finalists will be announced publicly on March 1, 2014. The Colondar is a valuable tool in educating the public about all things colorectal cancer but there are many other ways to raise awareness that anyone can participate in.

Today in the mail I received from the Governor’s Office, State of Washington, a state proclamation declaring March 2014 Colorectal Cancer Awareness Month. Advocates from all 50 states have submitted requests and many states have already issued their proclamations; many more are coming. Fight Colorectal Cancer and Colon Cancer Alliance have joined together in this project and we’re hoping to turn the entire country blue for March. This was the first time I made the request and I couldn’t believe how simple it was. It took about 15 minutes of time to fill out the on-line application and a quick follow up e-mail to the governors office.

March 3rd in New York City, Fight Colorectal Cancer will be kicking off their 2014 One Million Strong campaign and introducing the One Million Strong March. There will be a vow renewal ceremony during the festivities for colorectal cancer survivors and their partners for those who have signed up in advance. Festivities begin in Vanderbilt Hall, Grand Central Station. The March will proceed to Times Square. Find out details here – http://fightcolorectalcancer.org/nyc-one-million-strong-march

March 7th is “Dress in Blue Day”. Wear your best blue and read about details of the event, sponsored by Colon Cancer Alliance here –
http://support.ccalliance.org/site/TR?fr_id=1830&pg=entry

March 16th thru 18th Fight Colorectal Cancer will hold their annual Call on Congress in Washington D.C. Registration closes February 21st so sign up quickly if you are planning on participating but haven’t registered yet. You can learn more about Call on Congress here http://fightcolorectalcancer.org/do-something/change-policy-advocacy/about-call-on-congress/

Northwesterner’s, we haven’t forgotten you! Saturday, April 12th the Steve Baker Colorectal Cancer Alliance and Fight Colorectal Cancer will be hosting their first ever One Million Strong Event in Portland at Pioneer Courthouse Square. Details to follow – we’re still finalizing everything.

With spring approaching, it’s time to dust off those running shoes and get moving! No one can make this happen for a better cause than “Get Your Rear in Gear”. Follow them on Facebook and check out their web-site for a list of cities hosting 5K’s for 2014. www.getyourrearingear.com If you don’t see an event in a city near you, GYRIG can help you plan one of your own! Contact annecarlson@getyourrearingear.com for details on how to host a 5K in your own home town.

Another great organization for 5K’s and much more is Colon Cancer Alliance www.ccaliance.org Check out their web-site for upcoming “Undy5000’s” and their Blue Star Calendar for a list of other events throughout the year. And again, if there’s not an Undy5000 near you, plan one of your own! Contact the Colon Cancer Alliance (contact info on their web-site) for information on how they can help.

I live in a small town – population 18,000+. We have a small, local newspaper and it’s pretty easy to get a letter published in the Editorial Section. Take a moment to write to your own local newspaper about the importance of colonoscopy’s, age appropriate screening, family history and the importance of knowing and recognizing the symptoms of colorectal cancer.

If you have an event you want to share, post it on Colon Talk (the chat board here at The Colon Club), your Facebook page and any other media you utilize to get the word out.

One of the easiest and most powerful ways to be an advocate and raise awareness is to simply tell your story. Tell a friend, a coworker, a total stranger – anyone who will listen! If just one person who listens to you picks up the phone and calls their doctor to schedule a colonoscopy, you may have just saved their life. That is empowering and that is how one person – YOU – can make a difference in fighting this disease. I hope each of you enjoys March as much as I do. It’s bittersweet, for sure; the reasons I love March so much. I wish I’d never found my way into this world – but I’m here. And so long as I’m here, I’m going to do what I can within my power to make a difference. I hope you feel the same way and will do all that you can, to make a difference as well.

Lessons Learned

by Janet Klostermann

Many of you know me as “Janklo”, the mom of Lauren, who died at age 28 of signet ring cell colon cancer. But I also have prior experience with a close family member who was diagnosed with cancer. In 1984, when I was 23 years old with a 3-week old baby (Lauren), my mom was diagnosed with breast cancer. Now 1984 version of medical treatment is like the dark ages compared to today’s treatments. I still remember the day of my mom’s big surgery. It lasted over eight hours and she had a very hard time coming out of the anesthesia. It was just my dad and I in the waiting room. My two younger brothers were in high school and college at the time. The surgeon came out and said that there was no way my mom would survive more than a couple of months as the tumor was the size of a grapefruit and he knew he did not get all the cancer out.
As it turns out, neither the surgeon, my dad nor I told my mom this news.

About ten years we were having a conversation and I mentioned to my mom that she was not supposed to have survived more than a couple of months at the time of her initial surgery. Apparently my dad thought I would have told her and I thought he would do it. When my mom heard this information, she said that if someone had told her she had two months left to live, she would have gone home, taken to her bed and stayed there. Instead, she came home and changed her whole way of living. She started eating healthier foods and started walking every morning, working her way up to five miles a day. Cancer Lesson #1: Never ever give up, no matter what the prognosis and cancer Lesson #2: Attitude is everything.

My mother lived 16 more years with her cancer. She got to meet all eight of her grandchildren, she got to celebrate her 30th wedding anniversary with her father and she got to experience a lot of wonderful things in life. Cancer Lesson #3: Experience all life has to offer.

Fast forward to 26 years later. . . I received a call from my super independent, smart, witty, driven oldest daughter, Lauren. She had been having issues with nausea, pain and vomiting for several months and after removing her gallbladder, doctors had ordered a colonoscopy. She had just received a call from the GI doctor telling her she had cancer. She lived ten hours away from us and was single, although she did live with her boyfriend. The doctor called her when was driving home from work and gave her this information over the phone “you have cancer, but it probably did not originate in the colon, it is most likely from the breast, the stomach, the pancreas. It is signet ring cell, very rare. My office has already set you up with appointments with a surgeon, an oncologist, for a mammogram, a CT and a PET scan”. All the worst news in the world, delivered via one phone call. Thankfully, further testing revealed all those things to be wrong. The cancer was only in the colon and originated there. Cancer Lesson #4: Don’t panic when given your diagnosis.

Of course any of you who are “moms” know that my first reaction was to do whatever I could to “fix” this situation. That was not possible, but I tried my best. My husband and I went to Dallas for Lauren’s initial colectomy surgery. I saw a lot of things and learned a lot of things on that 2 week trip, things I’d really rather not have seen or heard about. But now we knew what we were dealing with in terms of our enemy – Stage 3C SRC colon cancer. The next 2 ½ years were filled with ups and downs, CEA tests, scans, new doctors, more surgery, trips to Texas, chemotherapy, therapists, phone calls, loss of the boyfriend, loss of her job, loss of more internal organs, loss of her hair, even loss of her independence when Lauren moved in with us for her second round of chemotherapy. There were good things too. Two new jobs with fabulous employers who were super supportive, our younger daughter’s wedding and accompanying festivities, new friends we all made. I still never gave up hope and I learned so much, mainly from other people right here on The Colon Club. Cancer Lesson #5: Be your own advocate.

When we’d reached the absolute end and the doctors told us there was nothing more to do, there were still more lessons to be learned. I had to learn to let her go and make it easy for her. I also had to make it easy for my husband and my other daughter by taking on all the legal stuff, the paperwork, the sorting out of her stuff all myself. But, the people of The Colon Club are the ones that really, really helped me get through that part too! Cancer Lesson #6: When the time comes, don’t be afraid to let go.

Fitness Against Cancer

by Jose Baez

As I wipe the sweat off my face, I look around the gym and see the familiar faces of gym-goers and reflect how this routine part of my life played an important role in overcoming stage four colon cancer. In high school, I played soccer and wrestling. During my college years, I started running as a way to stay fit and found it to be a great stress reliever. Although I still loved running, my career and family left me very little time for running, so I started to spend more time in the gym and riding my mountain bike. Soon, I was hooked.

When I walked into my house from the hospital after nineteen days, I was scared and unsure what was next. I was sore from the surgery that removed a baseball size tumor from my colon. With chemotherapy being the next step before the follow up surgery to remove the three small tumors from my liver, I needed to feel capable of tackling my future. As soon as my wife left to go to the pharmacy and under the protest of my mother, I grabbed the vacuum and cleaned the upstairs rooms. It was a small gesture, but it reinforced an inner determination to not let cancer dictate my life.

After two months, I was given the OK to start physical activity. I had started chemo which brought so many side effects and challenges, but did not change my mind to return to the gym as soon as I could. My chemo regimen started with four hour sessions on Monday, then 47 hours with a pump. It was taken off on Wednesday afternoon. By Thursday morning, I crashed all day. It was not until Friday afternoon that I started feeling better. With a week off from chemo, I headed to the gym that Saturday morning.

It became a routine to head to the gym as soon as I finished the chemo week. The Saturdays after chemo was the hardest since I was still somewhat weak and it always ended in my vomiting in the parking lot afterwards. But it got easier as the weeks passed by. At first, people at the gym were not aware of my cancer diagnosis; they just assumed I lost weight. They would praise me on how good I looked and ask what my secret was. With my mischievous side taking over, I would look at them and say with a straight face, “cancer”. They would walk away confused. But to me, it was a small victory over cancer knowing that most people could not realize that I was a cancer patient. It also reinforced my desire to stay fit through my battle, to stay stronger than cancer.

Before my cancer diagnosis, I would ride my mountain bike through local trails with friends during the weekends or through town when by myself. I remember always passing an older couple that rode a double person bike. It was cute to see a couple sharing their passion together but I found them to be slow riders. Karma paid me back the first time I took my bike out after the first surgery. I was riding through town, thinking that I was keeping up a nice pace considering chemo. Then I heard the couple behind me shouting a warning that they were passing me on the left side. They flew past me as if I was standing still. It dawned on me how slow I must be going to have them cruise by so easily. I stopped and cried on the side of the road, allowing myself to feel defeated. But I quickly cleared my mind and started pedaling again until I finished my ride.

With three reoccurrences, I have endured four operations and four chemotherapy treatments (each lasting 6 months). Each time, I started all over again the battle to stay fit and to return to the gym as quick as the surgeon would allow me. As long as I could work out, I knew cancer could not defeat me. During the last surgery post consultation, I asked my surgeon when could I go back to the gym and if I could do abdominal workouts considering he removed my spleen (had a tumor) and my gallbladder to make room for a HAIP (chemo pump) which is installed in my abdomin. He was shocked that I would even ask that question. He answered honestly that he does not know since no one has ever asked him that question. Once cleared, I was back to the gym.

This past December I celebrated my five year stage four colon cancer diagnosis. The chances of surviving past five years was less than ten percent, yet here I am. I am still alive, strong and going to the gym frequently. I have never looked like a cancer patient. There are many factors that contribute to my survivorship; the support and love of my wife, family, friends and colleagues, eating healthier and staying fit.

Was It Worth It?

by Belle Piazza

Despite Christmas being my least favorite holiday, December is always a crazy busy month for our family. This past December I owe part of the craziness and a tremendous amount of thanks, to my friend Jaynee (weisssoccermom as most of you know her). For the past several years, Jaynee has gifted to our family a weekend in her time share condo in Leavenworth – a charming little Bavarian town set in the mountains of eastern Washington. The town has capitalized on the Bavarian theme and it’s a festive German wonderland. This place knows how to do tourism right. From a centrally located gazebo hosting a variety of local singers and musicians to strolling Santa’s, Nutcrackers and even Grinches. There are wine tasting rooms, oil and vinegar tastings, cheese tastings. There’s a brat on every corner and even a Starbucks discreetly tucked away so not to look too out of place. There’s German bakeries where you can purchase streudle to die for and of course pretzels. Their Nutcracker Museum houses over 6,000 different nutcrackers of all shapes, sizes and styles. If it’s German, you’ll find it here in abundance. At night the town is lit up from one end to the other (a half mile maybe) in lights of all color, even on the highest trees. It is a charming place to spend a weekend in December.

Jaynee and her husband stayed in one of their condo’s while we were there so we got to spend some quality girl time together. This year we were joined by Jaynee’s friend Carolyn from Idaho. And so I found myself that Saturday night, hanging out with Jaynee and Carolyn in Carolyn’s living room. I’d just met Carolyn the night before when we picked up Jaynee and her husband at the train station and I knew the moment I met her that I liked her. We have that bond. That one thing in common that no one ever wants to have in common; colorectal cancer. Jaynee was diagnosed in 2006 as stage 2. Initially she was told she had two years to live. She is now a 7 year survivor and cancer free. I was diagnosed in 2007 – initially thought to be a stage 1 or 2; ended up stage 3 and now I’m stage 4. Carolyn, diagnosed in 2009 as stage 1 and told she was cured, is now stage 4 – a stage 1’s worst nightmare come true. As I often tell people, cancer has no rules.

As you’d expect, we talked a lot about our disease, our doctors, our experiences. At one point, Jaynee, who knows me very well, asked me “Has it been worth it? I mean you seem to have a pretty good quality of life don’t you? Or do you just hide it well?” And there I was – speechless. I couldn’t answer the question of “has it been worth it?” – there’s just no words. Has it been worth the pain? The struggles? The financial burden? If I was cured, sure. It would have all been worth it. But I’m not cured and probably never will be. All we’re doing is prolonging my inevitable death. So – is it worth it? To this day I can’t answer that question. For me, the answer lies with my family. When I’m dead and gone and they look back on my time here, will they feel it was worth it for me to be here for one more Christmas? One more birthday? One more family vacation? Will my being here for a few more years have any lasting impact on their lives? Did it keep my kids off drugs? Did it encourage them to go to college? Did it help lead them to have healthy relationships with their spouses? Did it instill in them a sense of social responsibility and help build their character? When Jaynee asked me if it was worth it, I told her it wasn’t a choice – I have kids – I have to do whatever I can to keep myself alive as long as possible. The answer was just that simple; yet not really an answer at all. I won’t know for years and until long after I’m dead and gone whether all of this was worth it.

And what about my quality of life? Do I have a good quality of life or am I just hiding it well? At that moment, in that room, with these two very special people, I realized this was my chance to let down my guard. Truly let down my guard the way I never do and tell someone how I really feel. About the paralyzing fear I have about dying. About the debilitating depression I experience every single day. Fear and depression that makes the very real physical pain pale in comparison. I talked about how I can literally feel my energy and my life force dwindling away a breath at a time. How every year I’m giving up just a little bit more of my life’s activities. Jaynee, despite being a stage 2 and considered cured, has a level of empathy and compassion as deep as the ocean. Carolyn, who is basically living a life parallel to mine said little, but I could see in her solemn expression more than words could ever say. She knew exactly what I was talking about – she’s living it. And so for a moment, I could be totally open and honest and raw – and it was okay. This was my safe place.

Jaynee held me and let me cry. And as a true friend will do, she had me laughing again in no time. But for a moment, I could be real. I didn’t have to be strong, put on a brave façade or pretend that life was good. It was a valuable reminder to me that as a survivor, we need to connect with other survivors. Our bond is strong and we can help each other in ways that no one else can. Family, friends, therapists and antidepressants can only go so far. They all do their best and they all care, but no one can truly understand how we feel like another survivor can.

I went back to my condo that night and crawled into bed. My daughters friend had thrown up while I was gone. My son, who had a mighty impressive crash on his sled earlier that day was recovered enough to wrestle with the friend he’d brought with him. My husband was watching a movie. I slept well that night, with a much lighter mind than I’d started the day with.

David Dubin is AliveAndKickn

by Belle Piazza

I first met David Dubin at The Colondar photo shoot in June of 2011. I can’t say I remember the exact moment we met, but what I do remember is hearing voice. He has a voice that is reminiscent of Barry White with a little Nicholas Cage mixed in to lighten it up just a bit. Visualize that ladies. At the Colondar shoot it was difficult for me to hear the stories of the models – because meeting them and getting to know them personally made their stories so much more painful.

David has Lynch Syndrome, a genetic condition that predisposes him to a variety of cancers, including colorectal. Although upsetting, this was not surprising news to David whose father, grandfather and older brother were all affected by colorectal cancer. First diagnosed with colon cancer at the age of 29, ten years later David was diagnosed with a secondary colon cancer and kidney cancer. Today David is cancer free and closely monitored for any signs of a recurrence or a new cancer.

For some the story would end there, but that’s not who David is. In 2007 David hosted his first annual “Dave’s Not Dead Yet” barbecue for friends and family and started a blog he eventually titled “AliveAndKickn” as his wife wasn’t too crazy about the “Dave’s Not Dead Yet” theme. The blog evolved and has become a non-profit organization devoted to raising awareness about colorectal cancer and Lynch Syndrome.

A signature event of AliveAndKickn is their AliveAndKickathons (soccer tournaments). Having three boys of his own, David is an avid soccer player and coach so this was a natural fit for his nonprofit. Most events are currently held on the east coast where David and his family live, though they hope to spread the Kickathons across the country. With his oldest son turning 18 this year, he already has plans for genetic testing and a colonoscopy. David, having been first diagnosed at 29, isn’t taking any chances when it comes to his children.

And lets not forget that voice. David frequently speaks to various profit and nonprofit groups about the importance of early and regular screenings for colorectal cancer and to educate groups about Lynch Syndrome.

You can follow David on Facebook and Twitter and check out his website at www.aliveandkickn.org For David’s Colondar story, check out Colondar Model – January 2012. The Colon Club thanks David and AliveAndKickn for sponsoring The Colondar – December 2013. We look forward to hearing much more from David Dubin and AliveAndKickn in 2014!

Ask Humbly, Give Willingly, Accept Graciously

by Belle Piazza

Living with cancer, especially as long as I’ve been dealing with it (6+ years now), the question of “what can I do to help?” comes up a lot. Simple question, complex answer. I can only speak for myself based on my experiences and what I appreciate the most. So here goes, my best shot at answering that oh so illusive “what can I do to help?” question.

First off, I really, really try to do things myself. This is partly because I’m an independent person by nature and partly because it makes me feel self sufficient and useful; even if just to myself. When I do ask for help, I really need it. So first piece of advice – don’t offer to help if you don’t intend to follow through. When you do make this offer – consider what you are and aren’t willing to help with. Offer suggestions rather than just “what can I do?” Are you willing to clean my house? Walk my dog? Run errands? Take my kids to their appointments? Take me to the ER in the middle of the night when it’s pouring rain outside and I have a blockage? In my situation, there is no end game here. There’s a 99.9% chance that I will have cancer for the rest of my time here on earth. This is a marathon, not a sprint – so keep that in mind when you offer to help. Are you a one hit wonder or are you really committed to being there when I need you?

Second piece of advice – please don’t treat me like a person with cancer. If you know about my cancer, we most likely have a long term or semi-long term relationship. You didn’t become my friend because you felt sorry for me – so don’t start now. Don’t call asking “how are you doing?” just to find out if I’m dead yet. Spend time with me doing fun things – like a weekend BBQ with our families. Sharing a glass of wine or a cup of coffee. Going for a walk, a road trip, camping, attending an art show or getting our hair done together. It’s fun, it’s a distraction from the darker moments in my life and it’s how I really want to spend the time I have left with my friends and family.

Third piece of advice – leave the drama at the door. The last thing I need in my life is more drama – I have enough to share. Examples of drama I may not have a sympathetic ear for include how you got stuck behind a school bus that made you late for your mani-pedi. The person in front of you in the express line at the grocery store had 12 items in their cart when they should have only had 10. Stuck on level 65 of Candy Crush? Find any random 12 year old to help you out of that pickle. Panties in a bunch over watching the evening news? Change the channel. Your neighbor isn’t maintaining their lawn, you had the 24 hour flu and you were SO SICK or you had a really bad hair day. Seriously? Wow! And by the way, did I mention I have terminal cancer?

While I don’t need unnecessary drama, I do want to hear about your life. I want to hear about your spouse, your kids, your job. Tell me about the fabulous restaurant you went to after you burned the Thanksgiving turkey. Talk to me about movies, what you thought of the Breaking Bad finale or what you think of Obamacare. Tell me about your crazy family, your beautiful children or your insane coworkers. Talk to me. My problems may seem bigger than yours but that in itself is inconsequential. It feels so good to connect with a friend about their lives – big things, little things, silly things. It just feels good. And when you keep things in perspective and can laugh about it, then I even want to hear about your bad hair days.

Lastly, and perhaps most importantly, please don’t let me feel alone. Be there when I need to talk about cancer and just listen. I don’t like to talk about cancer 24/7 but sometimes I just need to hear something out loud in order to process it and move on. If it scares you, well, it scares me too. We can be scared together. This is most likely new territory for both of us. Please don’t turn away from me because of my disease. I’m not looking for answers, advice or how apricot pits ground up and smoked with marijuana will cure cancer. I’m confident in my medical team and I know all about 2nd and 3rd opinions. What I really need in my life is someone who cares and will just listen to me and support me in whatever the latest challenge is I’m trying to overcome – and the challenges do seem to just keep coming. Let me cry when I need to cry and before you know it, we’ll be laughing again. Because that’s what real friends do. We laugh, we cry and we carry on through the good times and the bad. Whatever the outcome, we will get through it together.

The Red Hobbit Foot

Michael and Whiskey

by Belle Piazza

Today was “evil chemo day” for me; a day that I dread, but I only have to go through once every three weeks. I get Erbitux, Irinotecan and I start my two-week cycle of Xeloda. It’s a long day at the chemo center and it begins a period of 3-7 days of feeling like total crap. I’d made arrangements for the kids, who are out on summer break, to spend the day at their grandparent’s house. I’d drop them off at 9:15 and then head to Portland for my treatment. Michael woke up complaining about how itchy his bee sting from the night before was. So I applied fresh baking soda, slapped a Band-Aid on it and gave him a Benadryl. It was a little puffy – unusual for him, but not alarming.

My white blood count was a little low so my Irinotecan was reduced by 20% and I was told to wash my hands a lot and be wary of any fever I might develop. Business as usual. On the way to pick up the kids after chemo, I got a call asking if they could spend the night at Grandma & Grandpa’s, which of course was fine with me. I’d meet them at our house so they could pack a bag.

As Michael walked in the door, once again, he complained about his foot. He doesn’t complain to Grandma and Grandpa – he saves it all for me. I’m used to this and it’s no surprise. What was surprising was the large red hobbit foot he revealed to me when he peeled off his sock. O-M-G – this was not the foot I saw less than 12 hours ago. It hurts and itches he tells me. I imagine it does as I tell him to put his sock and shoe back on and head to the car – we’re off to Urgent Care. I leave my daughter with Grandma and Grandpa and ask them to put the dogs away for the night – I’ll meet them at their house later assuming all goes well at Urgent Care.

When you have cancer, you generally get seen pretty quickly when you go to Urgent Care or the ER. Turns out the same holds true when you walk in and say your child is having an allergic reaction to a bee sting. Truth be told he wasn’t having any breathing problems, but I was. We got right in. The Nurse Practitioner was fabulous. Urgent Care is like home away from home for our family – love em. Good times.

They contacted our pharmacy to fill a prescription for a topical steroid cream and gave me instructions on ice packs, Benadryl and elevating the foot. We talked about what to watch for if things were to worsen and what to do. Awesome – we have a plan and it won’t likely require a trip to the ER – always a good thing. Off to Walgreens we go. I call the Grandparents to see if they’ll allow Michael to soak his foot briefly in ice water or if we should stick to ice packs. They aren’t big on messy things. They must have felt sorry for us both because they say we can do the ice bath soak. I know this will last all of 30 seconds max and they’ll think we were nuts to do it – but Michael thinks it’s a cool idea, so I’ll indulge him if they’ll let me. The pharmacist informs me that our health insurance has been cancelled. No I tell her, I was in yesterday and that was straightened out, we have health insurance with Aetna – it was cancelled in error but has since been reinstated. They call Aetna. Turns out Aetna reinstated my husband and me but the kids remain cancelled. Oh joy. Thankfully the steroid cream isn’t astronomically expensive so I pay for it out of pocket. I try calling my husband in Philadelphia to tell him about the latest/greatest with Aetna and our health insurance, but it’s 11:00 p.m. in Philly and he’s probably sleeping with his phone turned off. I make a mental note to send him an e-mail when I get home so he can rip the HR Dept. a new one.

Michael and I drive to Grandma and Grandpa’s where they’ve heated up frozen pizza for everyone. I wince, knowing that the kids and me made pizza the night before with home made pizza crust and home made sauce made with fresh ingredients from the garden. I’m hoping my daughter remembers her manners and hasn’t snubbed the frozen pizza. Fortunately my daughter is at that age where she’ll eat anything with cheese on it – good pizza or bad; and has devoured the entire cheese pizza herself. My breathing is slowly returning to normal. But my son won’t go for the Deluxe Pizza. Turns out he doesn’t like pizza sauce. Weird, I know, considering he’s Italian – but then my daughter doesn’t like chocolate; go figure. Fortunately my daughter had packed a PBJ for lunch that she hadn’t eaten, so Michael ate the sandwich and neither grandparent seemed too insulted.

By now it’s 9:00 p.m. I’m tired. Really, really tired. And really, really sick. I figure if I hadn’t gotten so much dexamethasone with my infusion earlier I’d never have made it this long. Adrenaline and steroids, good stuff. I’m home by 9:30 and still have to feed the dogs and e-mail my husband. I feel guilty because our new 4-month-old puppy got little to no attention today. Sick or not, I’ll have to make time for him tomorrow.

And yet as crazy and exhausting as my day has been, I am grateful for all of it. People ask me how I do it, but it’s because of all this that I keep going. When you see your child’s foot red and angry and swollen you instinctively go into action. It’s the every day chaos and challenges that push me onward and shove cancer off into a back corner of my mind because I have other things that require my immediate attention. I can’t sit in my recliner watching Dr. Phil on the DVR when my child needs me or when the dog needs to be fed and played with. It doesn’t matter how tired or how nauseas I am, I’m a mother and my kids always come first. I know the day will come when the cancer takes over. When I won’t be able to care for my children or keep them safe or solve their problems. But that day isn’t here yet. So today – whether it’s a trip to Urgent Care, a walk with the dog, phone calls to Aetna or making home made pizza with the kids; I will treasure those moments. Despite it all I’m still able to fix most of my kids problems most of the time. And when they see this, hopefully they don’t realize just how broken their mother really is. When I do finally get to go to bed at night, one of my newest tricks in calming my mind is to think of one good thing I did today – one thing I am proud of myself for accomplishing. Tonight I will have much to think about.

Colon Cancer Stars!

by Belle Piazza
The April sponsor for the 2013 Colondar is an organization close to my heart and close to my home – Colon Cancer Stars in Seattle, Washington. Founded by former Colondar Model (April 2007) and friend of mine, Anita Mitchell and her friend and fellow stage 4 colon cancer survivor, Carmen Mitchell. Anita and Carmen met during treatment for stage 4 colon cancer in 2005 and instantly became friends. Both diagnosed in their early 40’s with stage 4 colon cancer, they both had family histories of colon cancer, but were unaware of this history until after they were diagnosed. Had they known, they could have been screened earlier in their lives to either prevent the cancer from developing, or to detect it at an earlier, more treatable stage.

Armed with their new knowledge, the friends became members of the Colon Cancer Task Force, and soon began contemplating the formation of an independent nonprofit organization. Their goal? To educate the public about colorectal cancer screening and the role of family history. Anita and Carmen’s shared mission was to raise awareness about screening, family histories involving colon cancer, and to ultimately prevent other people from developing this disease. Unfortunately, Carmen Mitchell passed away on March 8, 2006, before her dreams were realized. Anita Mitchell created “Dress in Blue Day for Colon Cancer Awareness” in 2006, and in 2007 she dedicated it to Carmen’s memory. In 2009, Colon STARS partnered with the Colon Cancer Alliance to make this a nationwide awareness event.

Among their activities, Colon Cancer Stars owns an inflatable colon that travels to health fairs, a monthly patient support group for colon cancer patients and a recently developed curriculum to take the inflatable colon to schools to educate kids about healthy lifestyles, diseases of the colon and to know their family health history.

The school program is designed to meet the standards of Washington State Schools and offers various instruction levels for grades K thru 12. The program builds on itself so that as the younger grades focus on healthy activities and food choices, the older grades can delve into more complex subject matter such as family health histories, symptoms and diseases of the colon. The hope is that the kids will take this knowledge home to their families where constructive conversations can be had and children will encourage parents and grandparents to make sure they are getting screened at the appropriate ages as well as how to recognize symptoms. For the school presentations Anita dresses up as “Polly Polyp” and the kids get to tour the inflatable colon.

Earlier this year when seeking out a 3rd opinion about my progressing cancer, Anita reached out to me personally, having heard about my situation from mutual Colon Club friends. She helped me to select an oncologist to meet with at Fred Hutchinson Cancer Center in Seattle, talked to the doctor personally about my upcoming visit and even offered to let me stay with her during my visit there. During my Seattle trip I had the pleasure of meeting Anita in person to share dinner and some great Seattle microbrews with her. In a word, this woman is amazing; and although I tend to overuse that word, she truly is amazing and inspirational.

Anita is overflowing with ideas. They come out of her faster than rain in the northwest skies. She is a text book example of how one person can make a difference in this world. She has taken her passion, her creativity and her knowledge and channeled them into an organization that is working diligently to raise awareness of colo-rectal cancer and how it can be prevented. The Colon Club is extremely grateful to Anita and Colon Cancer Stars for their support of the 2013 Colondar. If you’re ever in the Seattle area, be sure to look her up. You can learn more about Colon Cancer Stars at their web-site, www.colonstars.org or follow them on Facebook. I for one can’t wait to see what her next great idea will be!

Pretty in Pink

by Belle Piazza

It was a bit of a rush from the Vancouver office where I’d received my radiation treatment earlier that morning down to Portland where I was scheduled to meet with my oncologist and receive my Erbitux infusion. As I checked in with the receptionist, she warned me with a bit of skepticism that film crews from The Rachel Ray Show were in the office. “Why?” I asked – not realizing it was October – the month that vomits pink.

I walked into the infusion room to find it packed; and not with Rachel Ray fans. There was one chair left –next to a young woman dressed up as a pink princess surrounded by her posse. I guessed she was 30 years old at most, probably younger. Smiling from ear to ear, wearing a cute pink wig, sparkly pink tiara and a pink shirt. She may have had a pink boa or maybe I just thought she needed one to complete her outfit – I can’t remember now. I tried to discreetly slide into the seat next to her, which wasn’t difficult as there was a huge bouquet of pink roses on the table between us I could hide behind. There was stuff everywhere – the way people camp out in a hospital room, but not generally a chemo chair. The camera and sound men were there and I suppose someone was asking her questions as she chattered on. At one point I heard her mother ask her what it felt like to be an inspiration to all of America. All of America. Wow.

As the story goes, the young woman, whose name is Tracie, was proposed to by her boyfriend Ryan during an interview she was doing for a local news station at the 2013 Susan G. Komen Race for The Cure in Portland. This led to a local jeweler donating an engagement ring to the couple; the jeweler having been the primary caregiver to her own mother for three years as she battled cancer. Today, in the chemo center, Tracie was on her last round of chemo – round #8. Sixteen weeks of treatment and she was done. Today was her graduation day and The Rachel Ray Show was there to record it all.

Tracie appeared elated. Tired, but elated. She was done with chemo and anxious to regain her life back. She has a wedding to plan, reconstructive surgery to deal with and a head of hair to grow back underneath that silly pink wig. “I can’t wait to get my energy back” she said to me between interview bites. Everyone loves a love story with a happy ending.

I looked around the room and saw my friend Christina, stage 4 pancreatic. I saw the young woman on the other side of me, completely bald with no pretty pink wig, but I’m guessing the same kind of cancer that the pink princess had, playing Boggle with her father. I saw the elderly man with the horrific skin condition in the corner that no one ever wanted to sit next to. I sat next to him once, he smelled funny. Christina was sitting next to him today and obviously not thrilled about it. Truth be told I’m just assuming it’s a man, it could be another bald woman – I’ve never wanted to stare at him (or her) that long; I figure he gets enough of that. I saw the newbies that the nurses were patiently and methodically explaining procedures to. I saw my friend Sylvia who volunteers on Wednesdays (because that’s when I’m there) bringing warm blankets and coffee to anyone who asks for them. And I saw the pink princess giddy with excitement at all the attention she was receiving, oblivious to the suffering around her.

I don’t fault Tracie for enjoying her moment. She’s obviously very young and no one, especially someone that young, deserves cancer. Her breasts will never be the same, but I hope that her treatment hasn’t compromised her chances to have children, as it has for so many young women who have colorectal cancer. I hope she doesn’t have a recurrence and end right back in this same chemo room – because celebrity talk shows don’t like sad endings. The only bright lights for that story would be in the operating room and the only camera’s the kind that take CT’s and PET’s.

This past weekend I met Kristin Lindquist from Get Your Rear in Gear for brunch in Seattle. During our conversation I casually mentioned how my “rah-rah” postings are the ones that go over best for my Survivor Sunday posts on their FB page. They’re definitely a group that likes happy endings. Kristin gently explained to me that they’ve found that if you get too raw and honest about the cancer experience it scares people away and they miss the opportunity to reach out and educate them about risk factors, symptoms and the importance of screenings. I never thought of it in that light and what she said made a lot of sense. I made a mental note – for that posting – to really focus on a positive and inspiring message whenever possible.

I truly hope that Tracie and Ryan have their happy ending. I haven’t quite figured out what their story will convey to those who watch it. Is it just a feel good story? Not that there’s anything wrong with feel good stories; heaven knows we could use more of them. Will it prompt women to get mammograms? Will it strengthen the illusion that we as a society can beat cancer if we just keep on smiling pretty and wearing pink ribbons? Or will it just encourage women (because this crap isn’t usually marketed to men) to buy more pink propaganda merchandise during October from companies who donate little to nothing to the cause; but gives the consumer that warm fuzzy feeling that they’ve done something good? Pink has become more of a fashion statement than an awareness campaign.

The world of cancer isn’t always pretty, but I’d rather face it head on without rose colored glasses to cloud my vision. My rose colored glasses were shattered years ago and I see no need to buy another pair. The majority of stories out there may not have happy endings or make you feel pretty and pink; but they are real and they are honest and they need to be told and listened to and understood with sympathy and compassion. Even if those stories don’t come with a sparkly tiara and a dozen pink roses.

Living with Chemo for Life

by Belle Piazza

“I’m going to run your CEA again to check on it, it’s risen quite a bit.”

“How much did it jump?” I ask my oncologist.

“It’s 70” (up from 19 at the beginning of the summer) Don’t get hung up on a number he tells me, but I know better and I can feel the tears welling up in my eyes. Increases in my CEA have always corresponded with growth of my cancer.

I frequently hear from friends “I don’t know how you do it?” To which I think to myself, “I don’t either”. It would certainly be nice if there were a handbook for cancer patients telling us how to manage the myriad of emotional challenges we go through. I don’t see the challenges any different based on your staging of 1, 2, 3 or 4; but rather they are amplified as your number gets higher. Not to minimize those dealing with stages 1, 2 or 3; the feelings of fear and anxiety are every bit as real and overwhelming as they are for those of us with stage 4. It’s just that when you hit stage 4 (and there is no stage 5 to progress to or through), you’re pushed further yet.

When I was first diagnosed my doctors thought I was a stage 1; possibly stage 2. My surgeon always suspected stage 3; but she couldn’t find a diagnostic test to confirm her suspicions; which turned out to be right. After surgery I was deemed cancer free and almost made it 3 years before the spots on my lungs were confirmed to be a recurrence of my original rectal cancer. When I heard the words “recurrence”, “chemo for life” and the dreaded “3 years left” my knees buckled and I fell to the floor. I had to have a nurse call a friend to give me a ride home. And then – silence.

“Tell me where you want to go” my friend said as we drove to the drug store to refill my Lorazepam script. “We’ll go wherever you want – we’ll get a room at the resort and go get massages, we’ll go to the bar – anything – where to?” But again, silence. I just wanted to go home. Caring friends all willing to talk surrounded me – but I was at a complete loss for words. I just wanted to stare at the walls and pretend none of this was happening.

I’ve almost come to the end of “3 years left” and I’m still here. While not cured, and with my cancer slowly progressing, I’m cautiously optimistic that I still have a year or two left. And while I’m woefully unskilled to write an instruction manual on how to live with stage 4 cancer, I’ll try to offer some help and advice for those who have the misfortune of following in my footsteps.

When I first joined The Colon Club there were a handful of members I looked up to. Bradyr, Justsing and of course Gaelen. There was Jessica, the young mother who fought so valiantly to live for her newborn daughter. There was Starbuck who just wanted to be a twenty something woman experiencing all life has to offer. Bill Llib – father, husband, Boy Scout troop leader, friend. All fought, all died. But it was their courage and determination that gave me strength – and still does. If they can do this, then so can I; even if “this” meant dying. We all need heroes. None of these beautiful people considered themselves heroes or ever wanted to be heroes. But I needed heroes to light the way for me and this is the role they played.

For those with stage 1, 2 or 3 you have hope – hope that the disease is gone from your body forever; hope that someday your life will return to what it was pre-cancer. Knowing that life will never be the same, but hope that it can still be good. I have hope too, but hope takes on a different meaning when you’re stage 4, on chemo for life and running out of options.

I hope that in the end my pain will be managed and when I do become incapacitated that it won’t last for long. I hope I’m not confined to a hospital bed for an extended period of time – that my passing is quick. I hope that my children and husband don’t suffer needlessly and endlessly. I hope that people remember me as a person and not a person who had cancer. I hope and I pray for strength. And somewhere in a deep dark pocket of my mind, I hope for a cure. It’s crazy, I know – but even those of us looking at grim futures still have a glimmer of hope that a miracle will take place. And really, is that any crazier than people who religiously purchase lottery tickets every week – convinced that one day their number will come up? Hope takes on many varied forms.

While living with stage 4 isn’t where any of us want to be or choose to be – life can still be enjoyed – tremendously – in between chemo treatments and side effects. And while we often feel we are the only people in the world suffering, there is tremendous pain in this world caused by things other than cancer. Hunger, abuse, disease, poverty, oppression – the list goes on. Sometimes we all need a reality check and to acknowledge that many people suffer – daily – to a greater extent than we do. When my surgeon first told me that my pathology report showed cancer in 27 of the 38 lymph nodes she had removed, I completely fell apart and asked her “how could this be any worse?” – to which she softly replied, “there is always someone worse off than you are”.

And so it goes. Chemo weekly. Scans quarterly; more frequent when trying a new chemo to see if it might work. Managing the myriad of side effects and assaults my body takes from the treatment designed to extend my life. Still, in between it all, there are many opportunities to live life. Granted I don’t live life the way I would have had cancer never entered my world. I’ve been detoured down roads I never would have otherwise traveled. Some of the roads take me to scary places, like the dark forest in The Wizard of Oz with mysterious creatures lurking in the shadows ready to attack. Some of the places have flying monkey’s trying to pull me apart and frightening voices screeching in my head. But other roads take me to wondrous places – like The Emerald City or the beautiful poppy fields. Last year one of the roads even took me to Kansas City!

Whatever road you find yourself on, always look ahead. Identify heroes to help guide you, walk with you and show you the way. While hope may take on different forms, always have hope. Live life to the fullest extent possible. Surround yourself with people who support you, love you and inspire you. Life is short and for some of us it will be shorter than others. Coming to terms with that doesn’t happen over night, but in time, we adjust to our new reality. It’s not what we wanted, it’s not what we chose, but it’s the cards we’ve been dealt. Sometimes we just have to put on our poker face and make the best of a lousy hand. It doesn’t mean the game is over, it just means it’s a little more challenging.

When my kids were little and it was time for a play date to come to an end, I always gave them the “5 minutes” heads up to let them know it was almost time to go. They acknowledged the 5-minute warning but when 5 minutes was up and it was time to go, my son would usually have a melt down. He didn’t want to leave the party – he wanted to stay and have fun. At times I have the guilty feeling of behaving like a two year old myself. I know that soon it will be my turn to leave the party and go home. It will be time to go – plain and simple. I’ll kick and scream and fight and throw a tantrum and do all I can to stay just a little longer. But even two year olds tire of this routine and eventually succumb to their destiny, pack up their toys and go home.

When I was in my 20’s I was an avid hiker, backpacker and long distance cyclist. I taught aerobics for a couple of years and I went through a period where I was obsessed with West Coast Swing and Country Western Dancing. It was always something. Friends who were less active marveled at how I could decide on a moments notice that it was a good time to join a group of friends and backpack through The Grand Canyon. What they didn’t realize was that I didn’t achieve that fitness level over night – it took many months of training and ongoing work to maintain that fitness level. The benefits were great, but it took commitment and hard work.

I like to think of stage 4 survivors in the same light. I didn’t reach this level of acceptance or coping overnight. I could behave like a two year old and have a complete melt down every time I get bad test results; but really, that just takes too much energy, which I don’t have. So I cry a bit, spend some time alone soaking it all up and processing it and then I do my best to move on. Some days are harder than others. It’s like hiking through the Grand Canyon. You find yourself halfway down the trail, tired, hot, sweaty and running low on water. You can sit there and cry and hope a donkey passes your way without a rider – or you can pick yourself up, dust yourself off and begin putting one foot in front of the other towards the river – where you can take off your shoes, rinse the dust off your face and replenish your water supply. Since donkeys don’t travel on most of the trails we hiked, I just kept putting one foot in front of the other until I reached my journeys end. I hope I can find the strength now that I found back then – on the trails and on the remote bike rides. And I hope that when I reach my final destination I find the relief, the peace and the comfort that each of my former travels blessed me with.

Tell Me a Story

Heather Forest, Master Storyteller

by Belle Piazza

This past weekend my friend Maria, her two boys and my two kids loaded into the mini-van and headed north on I-5 to Federal Way, Washington for a Storytelling Festival at Powell’s Garden – just south of Seattle. I first heard about this festival almost a year ago while watching CBS News Sunday Morning. A national TV show to learn about a storytelling festival practically in my own back yard – go figure. We parked at a nearby Middle School and took the free shuttle to the nearby gardens. As we walked through the gates of Powell’s Garden, well hidden from the street behind us, the view before me took my breath away. At that moment I decided, if you were a gardener and you went to heaven, it must look a lot like Powell’s Gardens.

A storytelling festival is just that – a group of people who get together and tell stories to other people. But these aren’t just random people reading from a book – these people are serious about their entertainment – these are “Master Storyteller’s”. It’s almost like watching live theatre. There are three tents running consecutive performances throughout the day – each lasting about an hour. Each performance includes from one to three storytellers. There are folk tales, tall tales, stories of families and childhood and stories gathered from around the globe. Some of the Story Tellers are local, some from the east coast and even one from India. There are lots of family friendly performances and even the youngest in our group – at six years of age, has plenty to choose from.

One of my favorite stories is told by Heather Forest. She plays guitar and sings many of her stories. She has a beautiful voice. Her last story of the day is called “Life, Death and String Beans: Tales from a Gardener”. How could I pass this one up? Heather tells us of how she married into a family of farmers on Long Island and the various roles in the gardening process each family member has played over the years. It doesn’t take long before she begins telling us about her grandfather and not long after that when I hear the word oncologist. My eyes immediately tear up; I know where this is going. I wipe a tear away and think how glad I am that I’m wearing sunglasses. She tells us about her grandfather running out of treatment options and his desire to “not die with chemo running through his veins”. She shared the wonderful stories of her grandfather passing on his wisdom and experience about how to propagate plants, start seeds and plan a garden to his daughter and granddaughter. How this purpose brought him extra time – good time. More time than anyone expected. About how his granddaughter grew a marijuana plant to help him with pain management and how they tried to hide the 7’ tall plant in between the tomatoes, only to ultimately find out the plant was a ‘male’ and basically worthless for medicinal purposes.

She shared advice from a hospice nurse about how important it was, when it was time for a loved one to pass – for those remaining to tell them three things. That hearing was the last sense to go – and even if the person could not talk to you – they could still hear you. That she’d seen this over and over – that the person could not pass until they heard these three things –

• Tell them you love them.
• Tell them you appreciate all they have done for you.
• Tell them you will be fine.

She shared with us the story of her mothers passing and how she was able to communicate these three things to her. She said that one of the children in her family once asked an elder “why do people die?” and the response given by the elder was “because they lived”. The best stories always make you laugh and cry and I did plenty of both during Heather’s performance.

When Heather was done, and the crowd around her dissipated, I thanked her for sharing her stories. I asked her if it was hard for her to speak about all these very personal experiences. No, she said, it wasn’t – because it was so important to her that people know and understand the importance of these three things – so that friends and family weren’t at a loss for words as to what to say or do in the end. Whether it was because I couldn’t finish a sentence without choking up or because of my ragged, jagged hair cut which has never grown back in properly, she suspected this hit close to home for me and I confessed it does – I’m stage 4. She hugged me and we talked briefly. I was grateful I could offer her my humble thanks.

On The Colon Club chat group we regularly hear from members who have made the incredibly brave decision to stop treatment. Many of us will be faced with such a choice in our future. Right now I can’t get my head around such a decision – it’s just too big. Stories like Heather’s help me. Stories from fellow Colon Clubbers help me. Stories help me. I hope Heather and the other Story Tellers have many more years to share their gift with lucky audiences. I hope that each of us on The Colon Club have many more years to help each other and those that find their way to the web-site in the future. Because lets face it, story telling, humor, friends and the simple act of reaching out to help others is the best medicine ever. So yes, please, tell me a story.

One Voice Against Cancer

Diana Christianson, Leukemia & Lymphoma Society, Belle Piazza and Jessica Wixson, LA for Rep. Jaime Herrera-Beutler

Diana Christian, Leukemia & Lymphoma Society, Belle Piazza and Jessica Wixson, LA for Rep. Jaime Herrera-Beutler

by Belle Piazza

The cab ride from Dulles International Airport to Capital Hill was long. I struck up a conversation with the driver who I learned was from Ethiopia. “What do you like the most about living in the United States?” I asked him. Without hesitation his response was “freedom to speak what you want to”. How true.

I had been invited to D.C. to attend the 14th Annual “One Voice Against Cancer” (OVAC) by “Fight Colorectal Cancer”; one of roughly 40 non-profit organizations who come together to advocate for funding for research, treatment and screenings for cancer programs. It was my opportunity to “speak what you want to” with my state legislators.

Despite my flight being delayed out of Portland and missing my connection in Chicago, I made it to D.C. in time for lunch with the group and our scheduled half-day of training. After the training session, which consisted of various speakers and exercises in smaller groups, there was a reception that evening at an Irish pub near the hotel. The pub was very small and the group was huge – so I skipped out early and called it a night. Tuesday was going to be a long day of meetings on The Hill and after taking the red eye from Portland I was exhausted.

Diana, a lobbyist with the Leukemia and Lymphoma Society that was asked to attend my meetings with me, met me outside of Senator Cantwell’s office shortly before our first meeting. I wasn’t quite sure why OVAC wanted Diana to accompany me as I’d participated the previous two years in “Call on Congress”, but she assured me she was there to support me in whatever way she could and that I was there to tell my story – that was the most important thing. Okey dokey then – off we went. Our first meeting went well and it didn’t take me long to realize just how sharp this twenty something girl was. She may not have had first hand experience with cancer but this was not her first trip to The Hill. She was smart as a whip, pleasant and filled in any areas of conversation that I was unable to speak about intelligently completely seamlessly. I don’t impress easily, but this girl knew her stuff and I realized at that moment, that this was a great opportunity to have her with me at our meetings.

Diana and I had a total of 4 meetings – two Senators offices and two Representatives. In between we had lunch together in one of the cafeterias. I learned that she had started out as a Financial Analyst out of college but wanted a career that had more meaning and made a difference, so she landed a position with the Leukemia and Lymphoma Society. She was so excited to work for them and couldn’t believe that with her limited experience they hired her on. It was no surprise to me and I could see this was a perfect fit for them both. I asked her if she had any suggestions on how I could improve my presentation as I’d always done these meetings solo. “Yes” she said, “you need to spend more time on your story – that’s the most important part”. This made sense to me and I realized how I tended to glide past my personal story because I’d told it so many times and I didn’t want to focus solely on me. Still, I was missing the point in my being there – so in my next meeting I shifted gears and spent more time talking about my personal experience with my cancer diagnosis, treatment and prognosis.

After our last meeting Diana and I said our good-byes and exchanged contact information. She had more meetings on The Hill and I needed to turn in my feedback forms to OVAC before I was done for the day. As I entered the meeting room at the Methodist Church where we were to check in, I saw Abby sitting in the back of the room. I’d met Abby the day before during a brief “meet your neighbor” exercise we had during our training session. They say there are no coincidences and this is how I felt about Abby. Abby works for Camp Kesim – a camp for kids whose parents have cancer. Abby lost her mother to cancer when she was just 14 years old. My daughter is 12 right now – and I honestly don’t know if I’ll live to see her turn 14. As soon as Abby shared her story with me I could hardly keep it together. It makes me tear up just writing about it. But I also knew I needed to talk to this woman – who is now in her early twenties. Unfortunately OVAC didn’t do a particularly stellar job of setting up opportunities for participants to really get to know each other and I didn’t think I’d see Abby again – but there she was and she asked me if I had time to talk. I wasn’t going to miss this chance again, so I grabbed a hand full of Kleenex and sat down to talk with her.

I wanted to know how she was able to get through such a painful experience and come to be such a successful, happy, well-adjusted woman (which she clearly was); so we talked about that. I wanted to know what helped her along the way, what she wished could have been different about her mothers final days and what advice she had for me. I couldn’t believe this woman had been brought into my life and was so kind and willing to talk to me about such a personal experience. After an hour or so Abby had leave to catch her flight home. We exchanged contact information and said our tearful good-byes.

I headed back to the hotel – a short walk from the Capital. In my hotel room I had just enough time to sit down for a short rest before it was time to meet up with Lydia (from The Colon Club) and Jennifer (from Fight Colorectal Cancer). Jennifer was kind enough to pick us all up in her car and drove us to a trendy Belgian food restaurant nearby where we had a fabulous meal, great Belgian beers and most importantly – time together for three good friends to catch up.

Wednesday morning I’d planned on one tourist activity – a trip to The Holocaust Museum. I was also able to fit in a quick visit to the Hirshhorn Art Museum before walking back to my hotel to catch the SuperShuttle to Dulles International Airport. With weather and other logistical delays, my flight was delayed by several hours, but I did make it home that night (actually early the next morning) and once again, I was exhausted. It was a whirlwind trip and I packed in a lot – but it was worth every minute. I was so grateful to have had this opportunity to talk to our legislators about the importance of funding for cancer research, treatments and screenings. I love meeting new friends, catching up with old friends and visiting places I haven’t been to previously. Whenever I make a trip like this I am grateful I’m still healthy enough to go. I think of all of those who don’t have that luxury and I think of those who are no longer here to speak – and I make those talking points in my meetings with our legislators. I am one face, one voice, one person – but I represent thousands. It was an honor to be able to attend this event and I hope that next March, when Fight Colorectal Cancer holds their annual “Call on Congress” that I will be there. And if I’m not, I hope there will be someone – hopefully many – who will be there to take my place and continue to speak up for us all.

Fight Colorectal Cancer!

Call on Congress 2013

by Belle Piazza
The May sponsor for The Colondar is near and dear to my heart – Fight Colorectal Cancer. I first discovered this group through Gaelen, who many of you remember. She was very passionate about this group and their cause. Their Mission Statement reads as follows: “Fight Colorectal Cancer demands a cure for colon and rectal cancer. We educate and support patients, push for changes in policy that will increase and improve research and empower survivors and those touched by cancer to raise their voices against the status quo.”

One of their biggest annual events is “Call-on Congress” held every March in Washington D.C.

Advocates from all over the country meet for a two-day training session, followed by a day of meetings on Capital Hill with our congressional representatives and finally – a big celebration party at the end.

In 2012 I decided to take the plunge and check out the event. My husband had a board meeting in D.C. that same week and Gaelen, who I had always wanted to meet, would be there. And I really wanted to see the sights. So we made a family vacation out of it and headed cross country to D.C. During our week long stay we saw many attractions, monuments and museums. But hands down, my favorite part of our visit was participating in Call-on Congress.

Fight Colorectal Cancer is more than just this one fabulous advocacy event. Throughout the year they lobby congress to support legislation that favors funding of research and programs for colorectal cancer. They regularly put on “Webinars” on topics ranging from life with an ostomy, the latest developments in colorectal cancer research, to life after cancer. All Webinars are free to anyone who wants to participate. They are also very proud of their “Lisa Fund” – where 100% of all donations go directly to researchers who are looking for ways to battle late stage colorectal cancer.

There is a section on their website discussing clinical trials – what they are, who should consider participating and how to find a trial that is right for you. There is a section that discusses Lynch Syndrome in great detail. And of course there are the basic Q&A’s about colorectal cancer. In short, the Fight Colorectal Cancer website is your one-stop shopping experience for all things colorectal cancer. If it’s not there, they will direct you to someone who will help you find out what you need to know about any and all aspects of colorectal cancer. And if you need someone to talk to, just call the toll-free help line at 1-877-427-2111.

What started out as a small grassroots organization by board member, Nancy Roach (whose mother–in-law was diagnosed with colorectal cancer) has grown into a powerful group creating change and demanding a cure. Headed up by Carlea Bauman and her outstanding crew, this is a group that everyone who is fighting colorectal cancer should be aware of. They offer education, support, advocacy and awareness opportunities and so much more. If you haven’t familiarized yourself with this group and their services, there’s no time like the present. Check out their website at www.fightcolorectalcancer.org and find them on Facebook. Join a community of advocates who understand that policy change equals social change.

Get Your Rear in Gear!

Get Your Rear in Gear

by Belle Piazza

If you get nothing more out of this blog article than what I’m about to tell you now, mission accomplished. Right now – this very minute, go to the web-site for “Get Your Rear in Gear” and find out if there is an upcoming 5K Run in your area – and sign up yourself and your family to participate! Not a run in your area, okay, we’ll get to that. http://www.getyourrearingear.com/

What is Get Your Rear in Gear?

What is “Get Your Rear in Gear” you ask? Well, let me tell you! “Get Your Rear in Gear” (GYRIG), was started in 2005 in Minnesota by Kristin Lindquist, who lost her sister to colon cancer. Kristin and her sister wanted to do something that would help others who were dealing with this disease and equally as important, to raise awareness about screening for the disease so it could be prevented or at least caught at an early stage. What they came up with is what we all now know of as GYRIG – a non-profit organization that operates Runs/Walks all across the United States to raise money for the local community to help fight colorectal cancer, raise awareness of the disease and educate the public on the importance of colonoscopy screenings.

Their goal for the first race was 500 participants – they ended up with 1,200 and raised over $75,000. Since that time the race has spread across the United States, growing every year. Their concept is simple. A timed race that can be run or walked. They frequently have a “Fun Run” for the kids before the main event. 75% of funds raised stay in the local community and are donated to a local organization that supports colorectal cancer through treatment, awareness, advocacy, screenings or some combination thereof. In 2013 they are on track to host close to 40 events across the United States.

While GYRIG started as an idea tossed around by two sisters, the organization has blossomed into so much more. From their web-site – “We are sisters, brothers, mothers, fathers and friends who have been affected by colon cancer and want to do something. Some of us are colon cancer survivors while others are those who work to honor those lost to this disease. We are a coalition that has formed 5K’s and other events in cities across the country, working together with health care providers, corporations and the media, to encourage people to ‘Get Your Rear in Gear’ and talk about colon cancer with their doctor, their loved ones and everyone they know. Together, we will positively impact this disease.”

And their Mission Statement “Empower local communities to promote prevention and early detection of colon cancer and to provide support to those affected.” And finally, their Vision – “To establish a colon cancer event and/or align with an existing event in every state to help raise awareness and funds in order to adequately fund colon cancer activities.” Powerful words.

GYRIG’s New Program – Caregiver Network

Get Your Rear in Gear recently launched a new program. In August of 2012, The Tony Snow & Betty Jo Caregiver Network was created to support caregivers and family members of colorectal cancer patients. Caregivers are invited to join a private online support group through Facebook (https://www.facebook.com/groups/331839576903519/) or apply for a financial grant. Grants given through the Tony Snow & Betty Jo Caregiver Network:

Provide opportunities to create family memories.
Help pay for getaway time for the primary caregiver.
Assist with the expense of counseling for children and families.
Sponsor children to attend camp and other coping opportunities.
Help cover unexpected household expenses while a loved one is in treatment.

Started by Tony’s sister, Jenny Snow Ashbrook, who first lost her mother (Betty Jo) to colon cancer and later her brother (Tony Snow). They are currently accepting applications for grants – with applications due June 30, 2013 (http://getyourrearingear.com/caregivers/).

Hosting a GYRIG Event in Your Area

Now back to my earlier comment – what if there isn’t a run in your area? Well, feeling ambitious? GYRIG has a fabulous handbook of how to put on a 5K Run complete with time frames, to do lists and just about anything you can think of – this handbook has it! They provide all the information you need to help you create a successful event.

A BIG Colon Club thank you to every single person at Get Your Rear in Gear., The staff, the Board of Directors, the hundreds of volunteers, thousands of participants and the community members who make the magic happen. And a very special thank you for GYRIG’s sponsorship of the 2013 Colondar.

Our Dirty Little Secrects

by Belle Piazza

Somehow with a cancer diagnosis the word gets out whether you want it to or not. Friends who you’ve lost touch with years ago resurface. People cautiously inquire as to your well being or lack thereof. A common question in everyone’s mind is “how could this happen to such a good person?”. And certainly I suspect the fear is there that if it can happen to me it can happen to pretty much anyone.

A friend I’d lost touch with over twenty five years ago has reconnected with me on Facebook and it feels as if a day has hardly passed since we used to play together as the high school friends we were. She casually mentions she can’t remember why we lost touch, but I’ve never forgotten. My dirty little secret that I keep close to my heart but see no reason in resurrecting at this point. A dirty little secret that I’ve wondered could have been the cause of my cancer in a karmic sort of way but have since dismissed. Another friend of mine as much as said I most likely brought on the cancer myself and wanted to know about troubling events in the years leading up to my diagnosis. Troubling events? Plenty of them – who doesn’t have challenges and problems? It’s called “life”. I conveniently chose to lose touch with this person as she was quickly becoming a troubling event in my life.

A friend of mine who is Mormon at one point told me that God would only do this to me if he was punishing me or if he was challenging me; and since I was such a good person, this must be a challenge. On that one point I can agree, this is a challenge. But I simply don’t believe that God would punish me, despite all the wrongs I have done, in such a horrible way. And besides, in the end, who is really punished – me – or the family I will ultimately leave behind to deal with the pain of losing their wife and mother.

A lovely woman who helps out in the chemo room asked me if I was a Christian to which I replied I am not. “Then you don’t believe in Heaven and Hell?” she inquired incredulously? “No – I don’t”. She went on to talk about the scripture and that if I don’t accept Jesus as my savior, I will go to Hell. I could tell this concerned her deeply. She is a lovely woman and though I have a different view philosophically, I can’t help but really like her. She doesn’t dwell on our differences and continues to chat happily with me to try to keep my mind off the bad news my oncologist just delivered to me. I know she will pray in earnest for my soul to be saved and I envy her for having such a strong and non-wavering belief in her religion.

Standing in line the other morning for a plant sale, I noticed the woman in front of me with a small round band aid on her chest. The same band aid in the same spot they use to cover my port after being deaccessed. Foolishly, I asked her if she was a cancer patient. She is not. It was for a biopsy – of which I didn’t ask about further. I awkwardly explained my reason for asking and with a blank look on her face she said “So you’re a survivor?”. Suddenly I was the one at a loss for words. “Well, I’m still alive” I mumbled. Talk about a quick way to end a conversation. Now, instead of me feeling angry at what other people say to me – I was the one feeling foolish and invasive and wishing I had kept the conversation to geraniums and hanging baskets.

And so it goes. We all struggle with the why’s and search for answers that simply aren’t there. Nothing can stop us from wondering, from questioning, from rationalizing and from hoping. But in the end the answer is always illusive and out of reach. In Becca Babcock’s documentary “I am a Stranger in Your World” (available for purchase on DVD in The Colon Club web-site store), one of her quotes strikes me deeply. “What in the hell did I do in this life or a previous life to deserve this?” My thoughts exactly. I guess we’ll never know; but it certainly doesn’t stop us from wishing we did. It’s as if knowing WHY would somehow bring us the peace that we so desperately desire.

Third Eye Colonoscopy

By Grant Choe, Third Eye Colonoscopy and Belle Piazza, The Colon Club

Our March 2013 sponsor for The Colondar is Third Eye® colonoscopy whose slogan is “Insist on seeing more.” As I began to do this blog about the company, my first question was “what the heck do they do?” So off to their web-site I went, where they have lots of easy to read information and data about their technology.

What I learned was that, although colonoscopy is the current “gold-standard” method for the detection of pre-cancerous polyps in the colon, it is not uncommon for lesions to go undetected even during meticulous exams provided by skilled physicians. That’s because the colon is not a straight tube. It is more like an accordion, with many folds and several turns to it.

Imagine looking through an empty paper towel roll and imagine that there is writing on the inside of that paper roll. You would be able to read the words on the inside of that roll pretty easily. But what if you scrunched and bent the roll so that it had folds and turns like an accordion? While you could make out some of the letters and maybe even some of the words on the inside of the roll, there would be a number of words or letters that would be hidden behind the folds and turns of the scrunched paper roll.

Similarly, polyps are often hidden behind folds and around turns of the colon. A standard colonoscope can only view what is directly in front of it so it can only provide doctors with a view of the front of these folds and turn. The Third Eye® Retroscope® device provides doctors with a second view during colonoscopy that allows them to see clearly behind folds and turns of the colon while simultaneously viewing the front of these same areas.

How does Third Eye work?

So how does it work? Remember that game we used to play as children where your friend would hold a number of fingers up behind her back and ask you to guess how many fingers were being held up? You had little chance of guessing the correct number because you couldn’t see behind your friend’s back but, what if you could do just that? What if your friend stood in front of a mirror that reflected her back from head to toe, including the fingers she held up? This is the basic idea for Third Eye colonoscopy.

Your view during this game is similar to the view of a standard colonoscope – you see the front of your friend, sly smile and all – and the reflection from the mirror is similar to the view provided by the Third Eye Retroscope device – you see your friend’s back including her fingers, similar to viewing the other side of a fold or turn in a colon. You would know exactly the number of fingers your friend is holding up. Likewise, doctors have a clear view behind folds and turns of the colon where pre-cancerous polyps may hide from the forward view of a standard colonoscope.

All colonoscopes have a “working channel” through which physicians can insert instruments to remove polyps or obtain samples of tissue in the lining of the colon. The Third Eye Retroscope device is passed through the working channel of the colonoscope until it extends beyond its other end.

As it emerges from the channel, the tip of the device automatically turns around 180 degrees to aim back toward the end of the colonoscope and the physician locks it into place. Then, as the colonoscope is withdrawn from the colon, the Third Eye device comes along with it, providing a continuous backward (or “retrograde”) view that can reveal polyps that are located behind folds in the wall of the colon.

The physician observes the forward view of the colonoscope and the retrograde view of the Third Eye Retroscope simultaneously on a display monitor.

Increased Detection of Precancerous Polyps

In patients at greater risk of colon and rectal cancer, Third Eye colonoscopy increased detection of precancerous polyps by over 40% over traditional colonoscopy.

Knowing this, who wouldn’t want this latest technology for their next scope? Third Eye Colonoscopy’s web-site has an easy to use Physician Locator where you can search by your zip code to see if there is a practitioner in your local area utilizing this technology. For more information on Third Eye Colonoscopy or to locate a physician in your area using this technology, check out their web-site at http://www.thirdeyecolonoscopy.com/

Many thanks to our friends at Third Eye Colonoscopy for their efforts in preventing colo-rectal cancer and for supporting The 2013 Colondar!

Cure is a Four Letter Word

by Belle Piazza

I always know that my scan is bad when my oncologist comes into the exam room, grabs his chair, and gets right down to business. If the scan was good he’d come into the room, shake my hand and instead of talking about the scan, he’d ask me how I’m doing and talk to me like an old friend rather than a cancer patient getting their scan results. Eventually he gets to the scan, which I’ve usually forgotten about by then, knowing the news is good.

My last scan was not good. A new spot on my lung plus two lymph nodes in my chest that hadn’t lit up in over two years were glowing again. Not good. I’m finally having to confront my reality, which is that “cure” is pretty much off the table and “more time” is my best hope. It’s a lot to get my head around. My husband wants to know “how long” but I won’t let him ask the oncologist this question. It’s just too morbid – I won’t go there.

So once again, it’s time to regroup, pull out my toolbox and take inventory. I need all the tools I can to deal with this latest development. Friends tell me “if you want to talk, just let me know, I’m here for you”. And as much as I appreciate this, there just doesn’t seem to be a lot to talk about. I can tell by the way a person says these words whether they’re really prepared to hear what I have to say or if they just say it because they don’t know what else to say. And really, what is there to say? “Wow – it sucks to be you….” – that about sums it up. My Colon Club friends rally behind me, as they have always done. They are my safety net, my security blanket. When times are darkest, I know they will always shine a light for me.

When Gaelen was near the end of her life, I noticed a marked increase in her anger and frustration levels. I was surprised to feel both of these feelings rage inside me these past weeks. I’m not an angry person by nature, but suddenly I felt both anger and frustration – with the disease, with society, with researchers who don’t talk to each other and share information, with doctors who don’t have all the answers. Anger that it doesn’t matter what you eat, what you juice, what treatments you receive, how positive your attitude or how much you pray – in the end, if cancer decides to take you – you’re outta here! Katie Couric recently stated on her show something to the effect of “the cemeteries are filled with people full of hope and positive attitudes”. Amen to that. It doesn’t matter whether you’re young, old, man, woman, husband, wife, mother or father. Cancer doesn’t care if you’re black or white; Christian, Muslim or Atheist. Cancer doesn’t care if you’re a good person or a worthless bum. Bottom line – cancer – doesn’t – care.

I get a second and third opinion, both of which offer me nothing more than my current oncologist can offer me. More chemo. And no more “chemo lite” as I call it, but the really nasty stuff that makes me sick as a dog. Since I’m considered terminal now, my oncologist will prescribe medical marijuana if I want to try it for the nausea. Great, I think, I’ve been dying to try that stuff.

I remember the advice I’ve given others. If one day at a time is too much to handle, then take it one hour at a time, or one minute, or one second. Break things down into smaller pieces that are easier to manage. Breathe in, breathe out. I use my anger to fuel my presentations to our State Senators and Representatives in Washington D.C. during Call on Congress. Suddenly my message seems so clear, so blatantly obvious. You either catch cancer early and prevent it – or catch it late and spend millions of dollars on a patient just so they can have a few precious years left before the disease takes them down.

I’m tired and I’m scared. I’m really, really scared. They say there are no atheists in foxholes. When hope is a rare commodity, we tend to find religion. I don’t pray for a miracle or a cure, though I’d take either one if there’s an extra to spare. What I pray for is strength. Strength to handle whatever path is before me. Strength to not let all this completely paralyze me with fear. Strength to continue speaking out about this disease and how easily it can be prevented to anyone who will listen until I have no breath left. Strength to continue living and loving my life, my friends and my family for as long as I possibly can. ‘Cure’ is indeed a four letter word and so is ‘fear’. But so are ‘hope’ and ‘love’. I’ll try hard to focus my mind on the latter.

Call on Congress 2013 – It’s Never Really “Over”

by Belle Piazza

Late Wednesday evening, surrounded by fellow advocates on the crowded dance floor – Rodrick Samuels, our charismatic and inspirational speaker for training, conga line leader and for the moment our D.J., shouted out over the music, “Take the “L” out of “Lover”, cause this party is “OVER!”. Over. I can’t believe it’s over and time to say our final good byes to people who are as close to me as my own family, more so in some ways. Doug gives me a hug so strong and so long that tells me what he won’t say in words. It says “we’ve lost too many already, we don’t want to lose you too”. But instead he tells me he is there for me. To call him any time. To let him know how things are going – good or bad, he is there for me; he cares. And I know that more sincere words have never been spoken.

I say my good-byes to Rose and her husband Eric. I try to thank her for all she has done for my family individually and the colorectal cancer community collectively, but Rose will have none of it. She tries to redirect the conversation so that it reflects back on how much she gets out of it all. And I know she does. But she gives back one hundred times more than she gets – it’s just who she is and why she and her husband were recognized as “Advocates of the Year 2013” by Fight Colorectal Cancer and why they received not just the award but a standing ovation, cheers and whistles from the crowd when the award was presented to them earlier this evening during the celebration dinner by their friend and 2012 Advocate of the Year, Pam Seijo.

My kids have waited all year for this party. Michael has been brushing up on his dance moves and Amber carefully thought out her blue wardrobe and accessories. Together Rose and Amber choreographed “The Colorectal Cancer Boogie” and taught it on the dance floor to all the kids. The largest Call on Congress to date, there were many more children this year than last, when Michael and Amber were the only ones there. And it worked on many levels. Parents are introducing their children to the legislative progress. Legislators are taking note of little people who aren’t often in meetings such as these but just at the Capital on school tours or family vacations. And as a community, we are preparing the next generation of advocates.

Last year I knew maybe two people at Call on Congress. This year, walking in the doors, I knew half the room, which numbered well over a hundred, including 88 advocates from all over the country. The Colon Club was extremely well represented with 7 current and former Colondar Models in attendance, along with The Colon Club President, Krista Waller and close to a dozen additional club members. The 2013 Colondar was distributed to many legislators during our meetings on Capital Hill.

As I looked around the room it felt like a family reunion. Random people, many of whom I met for the first time this year. But here, we’re family. We joined together to represent all those who are fighting this disease, those who have been lost to this disease and those who have it, or will have it – and don’t even realize it yet. There were two young sisters from Florida, who just lost their mother last month. Bill, whose wife attended with him last year, but lost her battle in the fall after 47 years of marriage. The “Fabulous Baker Sisters” from Portland, who lost their father 5 years ago to colorectal cancer after doctors repeatedly misdiagnosed his symptoms. And of course my dear friend Doug, who lost his best friend to this disease in 2007, just four months after being diagnosed. In normal every day life we might not even notice each other as we pass on the street, but in this room, at this event, we were one. One Million Strong.

A day and a half of intensive training and workshops culminated in our Wednesday meetings on Capital Hill with our Senators and Representatives. I brought stories, Colondar’s and arguments as to why I believe Congress should support funding for screening, awareness and research for colorectal cancer. I spoke from the heart with passion and determination. Did I make a difference individually? Did we make a difference collectively? I choose to believe yes on both counts. We have to believe. We have to have faith in ourselves, in each other, in our cause. Yes, we are living in difficult financial times. We have a congress that hasn’t learned the lessons on sharing and compromise that most 2 year olds have mastered. But when we toured the monuments earlier in the week and I walked through the Franklin Delano Roosevelt Memorial, The Martin Luther King Memorial and others, these were powerful reminders that we have been through hard times before. The great depression. World War’s I & II, The Korean War, The Vietnam War. Our struggles with segregation and all that entailed. We have persevered before and we will persevere again.

As we piled into our cab for the short drive back to our hotel, the cab driver asked me what the party was all about. “I’m glad you asked” I responded, and told him about Call on Congress. “Now let me ask you, are you current on your colonoscopy screenings?” – and yes, he was. And this is how it happens. One person at a time – we can and we will, change the world. I have faith. And in the words of the great Martin Luther King Jr., “I Have a Dream…..” And I do as well. We can and we will, beat colorectal cancer. Perhaps not today and perhaps not in my lifetime, but we will beat this disease. And someday, it will be as little known in this world as Small Pox or Polio. We all have to have faith but we also must work to achieve our goals. Individually we are one; but collectively, we are One Million Strong in the fight against Colorectal Cancer! Join me, join others, join “One Million Strong!”

Giving Cancer its Due……..NOT!

by Belle Piazza

Giving Cancer it’s Due…….NOT!!!!!

In my last blog, which I called “Surviving the Day”, I almost didn’t publish it because I thought it was so depressing that no one would want to read it. But I did publish it and I got some wonderful feedback from those who read it (thank you all so much!). But I really hate to be a Debbie Downer. I thought I should write a follow up blog to offset how depressing the last one was. Yin-Yang and all that good stuff. I’d certainly have plenty to write about. After all, these past five years, as difficult and challenging as they have been, have not been all bad.

To mention just a few of the highlights, I was blessed to have been selected as a 2012 Colondar Model. I participated in Fight Colorectal Cancer’s 2012 Call on Congress and have tickets to attend again this year, along with my two kids and one of my BFF’s. I participated in the filming of a Public Service Announcement for Fight Colorectal Cancer. Every week I get to write my “Survivor Sunday” post on the FaceBook page for “Get Your Rear in Gear” and I’m considering sponsoring a GYRIG 5K run in our community later this year. Not knowing how long I have to live has motivated my family to travel to places we might have otherwise postponed – Hawaii, Orlando, Cape Cod, Napa Valley, D.C. and so many more. I’ve made many new friends from all over the country – some of whom I’ve had the honor of meeting in person either locally or through my various travels.

I could write about the outpouring of love and support I have received from doctors, nurses, friends, neighbors and even total strangers. I could write about how much I appreciate the simple things in life and the joy in each and every day I am blessed to have with my family – not knowing from one scan to the next when the other shoe will fall and everything will come to a crashing end. I could write about strength, fears, perseverance, determination, faith and love.

And I’ve tried. I’ve tried so many times to write such a blog but it just won’t come. Because CANCER has NOT made my life better. I know it’s taboo to utter such heresy, but it’s true. My life has ALWAYS been challenging, difficult, exciting and rewarding. I don’t think you can have one of those dynamics without having them all. Cancer has caused me to shift gears but it hasn’t given me some sort of divine gift, inspiration or “ah-ha moment” that I haven’t previously experienced or wouldn’t have otherwise.

That’s right – I’ll say it – I am not a better person because of cancer. The simple truth is that I am in control of my life; not cancer. Cancer is nothing more than a disease. A terrible, awful, horrible disease that comes with horrific treatment options. Cancer has caused me to pursue different paths than I might have otherwise. It has led me to different experiences, to meet different people, to pursue different passions. Yet I refuse to be defined by my cancer or to give it credit for ANYTHING that I have accomplished. I have done what I’ve done in spite of cancer, not because of it.

I’ve met a number of people who claim they are grateful for their disease and that because of it they are better people. I take them at their word, not having walked in their shoes. But I’ve put plenty of miles in my own shoes and I have never viewed cancer as a blessing. I may sound bitter and although I’m sure a part of me still harbors some resentment towards cancer; for the most part I’ve gotten past that.

My life has changed because of cancer in ways I didn’t expect or imagine. But it’s been my choice to determine my path – to live life to its fullest, as I’ve always done. I refuse to role over and accept cancer as my ultimate defeat and demise – at least not just yet. As with most things, there has been much compromise. I’ve learned that I have less control over certain aspects of my life than I’d like to admit. I’ve learned how to better manage my time and energy and to recruit help when I need it. Still, for however many days I have left, I will live my life in a way that I see fit – always conscious of the compromises that must be made and the inevitable changes required of my best made plans.

I have cancer and cancer is a big part of my life. Cancer has influenced my choices, but it does not completely control them – at least not yet. Go ahead cancer, keep throwing me lemons. I’ll keep making lemonade. I’ll keep looking at my glass as half full until it’s completely empty. And even then, will I give credit to cancer for the amazing life I look back on? Hell no. I’ll look back on all the great times I had, all the great people I met, the great places I got to visit and all the amazing life experiences – and give credit where credit is due. To me, my family and my friends who made it all possible. Sorry cancer, I give you no credit – no due. I will never write about how cancer has enriched or blessed my life. That is SO not going to happen. Cancer is a terrible disease. Nothing more, nothing less. It influences my choices, but it does not completely control them. Not just yet anyway. Cancer hasn’t made me any more of a warrior or survivor than I’ve always been. I never chose to have cancer. But I can choose how to live with cancer.

COLON CANCER CHALLENGE FOUNDATION New York Colon Cancer Challenge – April 7, 2013

By Belle Piazza

When I first joined The Colon Club in 2008, one of the first things I did was order myself a copy of the The Colondar. I’ve had a current Colondar hanging on my kitchen wall ever since.

The Colondar is one of the main ways the The Colon Club spreads awareness and education of colorectal cancer to everyone who sees it, as well as hope and inspiration for those of us fighting the disease.

Publishing The Colondar takes a tremendous commitment from a devout group of volunteers and it also takes funding. Without the help from our sponsors, The Colondar would not be possible.

Beginning with our January 2013 sponsor, the “Colon Cancer Challenge Foundation,” each month our blog will highlight one of the 2013 sponsors.

About Colon Cancer Challenge Foundation

Mr. November 2013, Sanjay Bery, is not only a Colondar model, but he is a Board Member for the “Colon Cancer Challenge Foundation.”

The foundation was established in 2008 by Dr. Thomas K. Weber, Professor of Surgery at the State University of New York at Downstate and Chief of Surgery at the Dept. of Veterans Affairs, NY.

The foundation is “Dedicated to a World Without Colorectal Cancer.” Its mission includes:

raising awareness of colorectal cancer
the importance of screening colonoscopys
educating the public about the risk factors and symptoms of the disease
supporting research

Sanjay was first made aware of this organization when he and his family participated in their signature event – the annual New York Colon Cancer Challenge in 2009. This year, 2013 marks the 10th anniversary of this event which will take place on April 7, 2013. The Challenge offers options of a 1.7 mile walk, a 4 mile run or a 15 mile run all in beautiful Central Park, New York City.

Funds raised by Colon Cancer Challenge Foundation

Funds from the event go to – you guessed it – a world without colorectal cancer! Here are some of the ways the foundation uses their funds:

• Free educational materials and events in communities around the country
• A national tour of our educational inflatable colon – Rollin’ Colon
• Prevention Programs in New York City including colonoscopy screening efforts for the uninsured and underserved
• Funding to support colorectal research at leading institutions
• Awards to young colorectal cancer investigators presenting at the world’s premier colorectal cancer societies.

Learn more about Colon Cancer Challenge Foundation

You can learn more about The Colon Cancer Challenge Foundation online.

Get details on how to register for The NYC Colon Cancer Challenge on April 7th

Get updates by following or “liking” their Facebook page.

Sanjay will be running again this year, with many of his friends and family. If you’re interested in joining HIS team, click here!
We hope that many of you will be able to participate as well and help support this wonderful organization!

Media Alert: Young colon cancer survivors available for interviews during March’s colon cancer awareness

KANSAS CITY, Mo. – Feb. 14, 2013 – March is colon cancer awareness month – a time when stories featuring “butts and guts” become appropriate for the nightly newscast. The Colon Club has a database of young colorectal cancer survivors from across the U.S. available for interviews and willing to share their stories. To set up an interview with a nearby colon cancer survivor, please email Danielle@semicoloncomm.com or call (816) 729-7760.

Why feature colon cancer in young adults?

Traditionally, colon cancer is seen as an “old person” disease. Screening is recommended starting at age 50, or age 45 for African Americans. Although occurrence rates of colon cancer are down, studies are showing that incidence among young adult patients is on the rise. (See article by Dana-Farber Cancer Institute and statistics by The Colon Cancer Alliance.)

Featuring a young colorectal cancer survivor’s story can:

Shock audiences – the survivors do not LOOK like typical colorectal cancer patients.

Draw attention – young survivors often have large groups of supporters that share stories featuring them through traditional and social outlets.
Hit home the message – individuals understand the importance of screening and detection through young survivor stories (if it happened to them, it can happen to me.)

To locate a nearby survivor who can provide comment for a March colon cancer awareness piece, please contact Danielle Ripley-Burgess at (816) 729-7760.

About the Colon Club

The Colon Club is a New York State nonprofit founded in 2003 by two women impacted by colon cancer before age 30. The Colon Club serves to educate as many people as possible, as early as possible, about colorectal cancer in interesting and out-of-the-box ways and to encourage people to be screened when it’s appropriate for them. The Colon Club is the manager of The Colossal Colon (ColossalColon.com) and producer of The Colondar, a yearly calendar featuring men and women diagnosed with colorectal cancer under age 50. (Colondar.com) Please visit ColonClub.com for more information.

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Download a PDF of this press release

Surviving The Day

by Belle Piazza

I hear the dogs nails clicking down the tile hallway and I know it’s time to rise and shine; wake the kids and start my day. Before entering the shower, the colostomy bag comes off and is disposed of in an old Ziploc bag, which contains the smell amazingly well. Some shower with the bag on but I like to go commando – it’s the 15 minutes a day when I don’t have to wear the bag and I cherish that time; short as it may be. I lather up the medicated shampoo on my head and face to deal with the acne rash caused by the Erbitux infusion I receive weekly at the cancer center.

After showering I apply a medicated lotion to my face and then Vaseline all around my eyes to help moisturize my skin that gets so dried out by the medicated shampoo. There’s estrogen cream to be applied topically inside my vagina – and theoretically 15 minutes daily devoted to vaginal dilators. I call this “vagina rehab” necessitated by radiation and the resulting early menopause which has caused the skin in my girl parts area to become paper thin and dry. But I’m lucky, since for some odd reason the hot flashes and other menopause symptoms have largely passed me by. And as brutal as radiation was, for many the long term effects are much worse than what I experience. I slap on a fresh colostomy bag in record time. A fresh colostomy bag – kind of an oxymoron isn’t it?

A view of my upper body in the mirror reveals a host of scars. There was the VATS lung surgery, my former ileostomy, a few ‘test’ cuts from placing my colostomy, 2 hernia repair surgeries, 3 port surgeries and of course my long vertical scar from my belly button to bikini line from my original surgery. And to round it all out my c-section scar. The doctors tell me that my semi regular small intestine blockages that land me in the ER and sometimes a night or two in ‘da big house’ are likely caused by the scar tissue from all my surgeries. Too bad my abs aren’t as rock solid as all that scar tissue.

I slather Bag Balm on my feet and thumbs, around the tips of my nails to moisturize them and help prevent the cracking and bleeding the Xeloda causes. I wrap my thumbs in band aids for a little more protection. There’s not much to deal with as far as my hair, since I shaved my head last summer after losing so much hair while on Irinotecan. The Erbitux I’m currently taking causes lots of hair to grow back in – and not just on top of my head. Sure, it’s growing back on the top of my head, but also my eyelashes, eyebrows, all over my face and yes, even in my nose. On the up side, I have the eye lashes of a 15 year old. On the down side I have the eye brows and nose hair of Andy Rooney. At least the facial hair covering my cheeks and sides of my face is light blonde, so I don’t look like the Wolfman. I feel like I’m pruning an overgrown bush with all the plucking and trimming of facial hair I have to manage.

With breakfast I grab a handful of supplements prescribed by my Nutritionist to help support my body while I’m on chemo; which will be for the rest of my life. I also take my pink Xeloda pills, which will be followed shortly by a Compazine to help calm the nausea that the chemo brings. I take a Doxycycline to help manage the Erbitux rash. I grab the soy milk from the refrigerator for my coffee – having given up dairy several years ago in an attempt to get better control of my bowel problems. It helped, but not enough, which is why I ended up with a permanent colostomy. I decided to stick with the soy anyway, it’s pretty tasty. After breakfast I clean up the dishes with rubber gloves on – reminiscent of a 1950’s dishwashing soap commercial to further protect my skin from the hand/foot syndrome.

I carefully plan my days to ration what little energy I have. A great explanation of how little energy a chemo patient has is the “Spoon Theory” by Christine Miserandino (just Google it). I check and double check my calendar as with the chemo brain that continually fogs my mind I have frequent memory issues, especially when it comes to dates and times which I frequently get mixed up. Any errands and/or visits are carefully planned to ensure there is always a clean multi stall bathroom and and not one of those one stall wonders. At least in a multi stall bathroom there’s some mystery as who just bombed the place when I have to empty my bag in there. Colostomy supplies and a change of clothes are always in my car. A walk would be nice, but I can’t walk too far or too frequently due to the cracking and pain it causes my feet.

Evening brings a light dinner since by this time I’m tired and the nausea has returned. I choke down another handful of supplements and more Xeloda. Another application of Bag Balm goes on my feet and hands. There’s an ache in my back and I wonder if its bone mets or if I just need to see my chiropractor. I stay up late because sleep never comes easy and I hope if I’m tired enough, my mind will stay quiet long enough to fall asleep. I know this won’t be the case, it never is, so I take a Tylenol PM along with a Lorazepam for my anxiety. When I’m awaiting scan results I need Lorazepam to help calm my nerves more frequently than just for sleeping. I sleep on my back, so as not to interfere with my colostomy or my port; both on my left side. I have a slight headache and I wonder if it’s brain mets.

Yet through it all, I consider myself lucky. I have no permanent neuropathy from the oxaliplatin. My feet are a little unsteady so I no longer wear Birkenstocks in favor of a shoe with more support, but I can button my shirt with no trouble. Despite the initial outbreak I had with the Erbitux, my rash is well managed. The nausea is ever present but manageable for the most part. For now, I’m not in pain; but I’ve been there and have had a glimpse of how easily a person with valid pain issues can become addicted to pain meds. And I’ve heard so many stories from survivors who have finished with chemo and are cancer free but still suffer debilitating long term side effects from the drugs. Yet I’m here. To write this and bemoan all that I go through. So many families out there would give anything to have their loved ones with them, sitting down to complain about their side effects instead of the deafening silence that once filled their now empty seat at the dinner table. So I take a deep breath, practice my relaxation exercises, think of my husband and kids and tell myself that tomorrow will be a better day.

Meet Brian Novak – Mr. January 2013

Meet Brian – a stage III colon cancer survivor, diabetic and world traveler.

Sometimes, facing a life-threatening disease can leave you paralyzed with fear. Although you’re fighting hard to save your life … through treatment and beyond it can be scary to live your life.

Be inspired by Brian as he explains that he doesn’t let his sicknesses or health stop him from living his life. Watch as he talks about some of his amazing life experiences that have come even after being diagnosed with colorectal cancer.

Want to know more about Brian’s story? Read his Colondar Bio and find out how to get in touch if you want to know more about his world travels, mountain climbing and marathon running!

The Colon Club Adds Teen Survivor, Healthcare Marketer to Board

WILTON, N.Y. – Jan. 17, 2013 – Advocating colon cancer awareness and colonoscopy screening isn’t an easy job. Luckily, two women with a passion for colon cancer and a background in marketing have joined the Board of Directors of The Colon Club to help. Danielle Ripley-Burgess, colorectal cancer survivor diagnosed in her teens, and Debbie Donovan, healthcare marketing consultant, are the two newest board members to join the non-profit group.

“These two ladies bring a tremendous amount of experience and passion to our organization,” said Krista Waller, president of The Colon Club. “They both have a personal tie to colon cancer that fuels their efforts to advocacy. Plus, they’re skilled in marketing and anxious to help us get our message out and save even more lives!”

Burgess offers board a young survivor’s perspective

Burgess first became acquainted with The Colon Club after applying for the Colondar and modeling as Miss October 2009. Her story of colon cancer survivorship beginning at age 17 furthers The Colon Club’s mission to inform communities that colorectal cancer CAN occur in those who are young – even in their teens. Since featured in The 2009 Colondar, Burgess has volunteered as a staff member of The Colon Club helping oversee The Colon Club’s website, social media, marketing and public relations. She is the owner of Semicolon Communications, a marketing company in Kansas City.

“The Colon Club was formed by people like me, for people like me,” said Burgess. “Twelve years ago I never dreamed that I’d find an organization dedicated to connecting young colon cancer survivors like myself. I am honored to be a part of furthering the organization’s mission and continuing to offer hope and my expertise to aid those also facing this ‘old person’s disease’ way too young.”

Donovan brings medical technology marketing expertise

Donovan is joining the Board of Directors of The Colon Club after becoming acquainted with the organization through a sponsorship of the 2013 Colondar. She oversees the digital marketing strategies of Third Eye Retroscope a new endoscopic technology used during colonoscopy to give doctors a ‘rear view’ of folds and turns in the colon helping them see more polyps. As previous Director of Marketing at Advantis Medical Systems and current marketing consultant, Debbie focuses on developing digital platforms that enable medical device and diagnostics companies to increase patient awareness for live-saving technologies.

“My passion for colorectal cancer screening comes from my father who spent his career working on the Hemoccult fecal occult blood test–I grew up talking about poop,” said Donovan. “It’s critical for any-aged patient experiencing symptoms (like bleeding in the stool), to be screening for colorectal cancer. If a funny photo on Facebook or a clever joke on Twitter motivates that patient to take action, that’s a win.”

The Colon Club run by board of directors

As a non-profit, volunteer-based group, The Board of Directors is called upon to govern and direct the The Colon Club and its “crazy, out-of-the-box” projects. All board members are required to provide input, oversee a committee and ensure that the organization is meeting its aggressive goals and operating under best practices of 501(c)(3) organizations.

“Our board members are strategically chosen so that we have a well-rounded team that isn’t only skilled in the areas of operating a non-profit like The Colon Club but passionate about our mission, too,” said Waller.
Special upcoming projects of the group include a photo shoot and release of the 10th annual Colondar (the 2014 Colondar), strategic partnerships with other colon cancer-focused organizations and a national educational tour of “Coco” the Colossal Colon and the 2013 Colondar. The tour will stop in major cities across the U.S. and feature a 2013 Colondar model and education stations at each stop.

Meet the Board of Directors of The Colon Club

About the Colon Club

The Colon Club is a New York State nonprofit founded in 2003 by Molly McMaster, a colon cancer survivor diagnosed on her 23rd birthday, and Hannah Vogler, a cousin of the late Amanda Sherwood Roberts who died of the disease at age 27. The Colon Club serves to educate as many people as possible, as early as possible, about colorectal cancer in interesting and out-of-the-box ways and to encourage people to be screened when it’s appropriate for them. The Colon Club is the manager of “Coco,” the Colossal Colon (a 40-foot-long, 4-foot-tall crawl-through of the human colon), The Colondar, a calendar featuring men and women diagnosed with colorectal cancer under age 50, as well as an active online message board for young patients and caregivers impacted by colorectal cancer.

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Friend, Foe or Family?

Belle Piazza, Danielle Ripley Burgess, Krista Waller, Adam Benlon

by Belle Piazza

My brother e-mailed me the other day to compliment me on my latest blog entry for The Colon Club, which was nice I thought (the compliment that is). Then he suggested I blog about how a survivors family members are affected by their cancer diagnosis. It’s a good thing he couldn’t see my face when I read that e-mail – as he would have been greeted with a blank stare and look of utter shock and disbelief. My family? Seriously? We don’t talk about anything much more than the weather and what antics my mothers feral cats get into. It’s always been that way, ever since I can remember. At some point as I grew up and moved out on my own, I discovered that it was not only possible to have close emotional relationships with other people, but that it was like food for my emotionally starved soul.

None of my immediate family lives close to me. My mother, who I should note is quite elderly, and sister live in Arizona; my brother is in Florida in the Air Force. Since I was first diagnosed over five years ago, I have seen my mother and sister once when I visited Phoenix and a time or two when I flew my mother up for a visit during Christmas. I haven’t seen my brother in something like seven years – maybe longer. My brother and I e-mail occasionally as do me and my sister. It’s not that I dislike any of them or hold anything against them for our lack of emotional connection; it’s just that we are all very different people with little in common other than biologically. We rarely discuss my disease at all. When we do it is superficial to say the least. “How are you doing Belle?” – “Good” I say. “Great” says any given family member – “Oh look at that cat trying to climb the curtains – isn’t that cute? Is that one of your cats Mom or did someone leave the door open?”.

I’ve wondered how I would feel if it had been my sister or brother who was the one diagnosed with a terminal illness. Would I reach out? Would I try to help? Would I check up on them and follow their journey even if it was just long distance? I really don’t know. Our father died of colon cancer when he was 67. It wasn’t pretty. His death itself was quite peaceful, but the treatments he went through – thirty plus years ago, left him a shell of a man. My mother was like the Rock of Gibraltar through it all. She may not show much emotion, but her sense of duty is like none I have ever seen before or since.

Despite being raised in such sterile emotional surroundings, I’ve always had a desire to connect with others on a deeper emotional level. I can’t imagine going through cancer without a strong network of friends to pick me up when I fall and hold me when I cry. But I hold no ill will towards my family. I remember when I was younger and heard of various friends or acquaintances going through cancer. I didn’t get it. I so didn’t get it. The first person who reached out to me when I was diagnosed was a friend from Phoenix who had just completed chemo for breast cancer. I hadn’t talked to her once about her cancer or asked how she was doing. When she called me in the hospital I cried. Not for her, but for me and how ashamed I was that I wasn’t there for her. She never blamed me and has been one of my biggest supporters ever since.

I have to confess my feelings of envy when I read on The Colon Club about how supportive a spouse, a mother, a sister or a child is to the person going through cancer. Not being born into such an idyllic family setting has always made me a little sad. But that’s about as much thought as I give it. As with anything, things could be better but they could also be much, much worse. I don’t fault my family for what some might perceive as their shortcomings and/or lack of support. In my mind, God has always brought the people I need into my life whenever I have reached out and asked for help and I have faith that this will continue.

We all have to find our way through this disease. There is no instruction manual on how to cope with a cancer diagnosis – not for patients, caregivers or their families. On my fathers death bed, the last words I remember him speaking to me were that he did the best he was able to do. So simplistic, yet so profound. I’ve never forgotten those words and they have helped me keep balance and perspective in my life these past thirty plus years. It’s not my place to judge others or deem whether their actions are appropriate and/or insufficient in any given situation. While I’m dealing with cancer, others are dealing with their own challenges. Sometimes our paths parallel and we can help each other through the tough times and sometimes they veer off in different directions and we need to find solace elsewhere.

While I may not have the support system from my family I would have hoped for, or even close; I do have it from my husband, my kids, my doctors and nurses and of course my many friends. And I have The Colon Club. Five years is a long time to deal with cancer. Some of the friends who were closest to me five years ago are no longer forefront in my life. Others have since filled the void and there is room yet for more. None of us are perfect. We do the best we are able to do with what we have been given. And tomorrow, we will all try again to do things a little better. After all, if we were all perfect, what would we be doing here anyway?

It’s That Time of Year Again

by Belle Piazza

It’s that time of year again. Christmas, sure, but what I’m talking about is applying to be a model in the 2014 Colondar; the photo shoot for which will take place in June of 2013. As a 2012 model myself, I can’t believe how long its been since I was the lucky one in front of the camera, all made up and pretty for my photo shoot. Of course The Colondar can only accommodate 12 models each year. One of The Colon Club staff told me once “Choosing the models is the hardest part of all – I mean how can you say any one persons story is better or more compelling than any other? They’re all important and everyone’s story should be heard”. So many apply and only 12 can be selected.

The production of The Colondar takes months of preparation and hours upon hours of volunteer time to pull off. A theme must be chosen, a photo location, housing, food, travel arrangements, make up, hair and wardrobe just for starters. And the photo shoot, with all photos done by the amazingly talented Mark McCarty, is just the beginning. Putting it all together into a finished product requires the creative genius of Graphic Designer Troy Burns, who lost his father to colon cancer several years ago. And despite all the volunteers who selflessly commit their time to the project, printing a Colondar still takes money, so sponsors must be lined up. By the time the coming years Colondar is released, work has already begun for the next years Colondar.

But the essence of the photo shoot, the real magic, is the human connection that we make there. For many, meeting other survivors during the photo shoot will be the first time they have connected, face to face, with other young survivors. It is a powerful and life changing experience for all involved. And that my friends, is what I hope each of us will experience in our cancer journeys. Meeting other survivors, helping spread awareness and being able to share common experiences can do wonders for our emotional healing.

The Colondar can only accommodate 12 models per year, but there are many other ways that we can connect with other survivors and caregivers. “Fight Colorectal Cancer” sponsors “Call on Congress,” held every year in March in Washington D.C. “Colon Cancer Alliance” holds an annual conference – alternating between either an east coast or west coast location. Their “Undy5000” runs/walks and also “Get Your Rear in Gear” 5K runs/walks are held throughout the year in various cities across the country. Not an Undy5000 or GRIG walk in your city? Contact the organizations about how to put one together! Through the American Cancer Society there is Relay for Life. Many of The Colon Club members have made arrangements to meet others in person during our various travels for treatment or while on vacation to different parts of the country.

For the lucky 12 who will be chosen for the 2014 Colondar, you are in for the experience of a lifetime. As for the rest us, we too have the ability to seek out ways to raise awareness and connect with other survivors. I have been blessed during my five year journey to meet many survivors, caregivers and advocates. When I meet a fellow survivor, all I have to do is look in their eyes and I know – they get it. Without words we connect on a human level and know what the other has been through. It is through these friendships that I draw strength to continue on my own journey. I encourage each of you to reach out and connect with others who are following our same path. There are many terrible things about cancer. But there are gifts too. The greatest gift cancer has given me is the friendships I have made with so many of you out there. It is these friendships that lift me up and help me find strength to face another day.

When I met my fellow 2012 Models, what struck me most was that these were ordinary every day people whose lives had been turned upside down by their diagnosis. These were good people living good lives and it was heart breaking to know what they had been through. And every other survivor I’ve met I feel the exact same way about – good people; terrible disease. These survivors knew exactly how I felt. They knew my pain, my fear, my hope. And I knew that I was not alone in my journey. Meeting other survivors enriches your life in a unique and special way that no other relationships will.

For the 2014 models, be ready for a life changing event that you will cherish forever. For the rest of us, similar opportunities await – we just have to decide how to make them happen. I encourage each of you to look for ways to connect with other survivors in the coming year. After all, it’s these human connections with other survivors that are what the Colondar photo shoot is really all about.

Meet Miss December | Reagan Barnett

You can imagine our surprise when we sat down with Reagan and asked, “How did you feel when you were diagnosed with colon cancer at age 22?” and her immediate response: “Relieved.” But for someone with colon cancer running through her family and years worth of symptoms and pain, she was happy to finally have answers. Read on to learn more about Miss December, Reagan Barnett, a great spokesperson and advocate for colorectal cancer, and especially Lynch Syndrome!

The BASICS

Name: Reagan Barnett

Diagnosis: Stage II colon cancer in July 2008

Age at Diagnosis: 22

ON SURVIVING CANCER:

Where were you when you found out you had colon cancer?

I had just woken up from a colonoscopy; I was still drugged.

How did you feel?

Relieved. I had symptoms for five years. I was ready for someone to find it.

What were your symptoms?

I started having rectal bleeding when I was 17 years old. I had severe abdominal pain and gained 60 lbs. I was really tired and weak for about five years. When I started seeing bleeding I went straight to GI doc but he didn’t want to listen. I knew my family history (14 people in my family had colon cancer) and made him do a colonoscopy. But the problem was that he didn’t biopsy. My cancer actually didn’t come from a polyp – it came from inside the intestinal wall. Because the doctor hadn’t biopsied, no other doctor wanted to do one for years – or any other scans or x-rays. I was called a hypochondriac many times. I was told that my intestines probably had a tear, that I had food allergies, it was something that I ate, etc. After the first year of being turned away so many times, I didn’t see any other doctors for three to five years. I figured maybe it was food allergies so I didn’t eat processed food, watched my diet and took supplements. In January 2008 I started getting worse again and I knew it was cancer but I didn’t have insurance. I took out a supplemental policy but had to wait until July to see a doctor. In May before that month I stopped going to the restroom; my colon was 100% blocked. I stopped eating solids and stuck with smoothies and soups all while passing big blood clots. Finally in July when my insurance kicked in I saw a doctor again – different doctor same practice as the first guy. He didn’t want to hear symptoms or my family history and was certain I had ulcerative colitis – but said he would do a scope. When I woke up from the scope he said “We couldn’t finish it.” Apparently I was right.

What did your treatment involve?

I was headed to surgery the day of my colonoscopy and had a total colectomy. The next day I had emergency surgery and a temporary ileostomy put in. Eight weeks later, the ileostomy was reversed. But then I had an infection/abscess on my liver and they had to drain that. The infection spread to my lung, they tried to drain it but it came back so I had lung surgery after that. I chose not to have chemo or radiation; I was confident they got it all. Four surgeries in four months was enough.

Worst thing about treatment?

The worst procedure was liver drain and the iliostomy bag wasn’t fun. Relationships were hard in the midst too.

What got you through cancer treatment? Any goals or mindsets that plowed you through?

It was a hard experience, but a very positive experience. I saw reasons for it all; I saw possibilities of things getting better.

Does cancer run in your family?

I had hereditary cancer – Lynch Syndrome. Have a very strong family history – 14 people on one side have had Lynch-related cancers. Nobody has been officially genetically tested, but we’ve done tumor testing. Our history is so strong that even if the test negative, we know we have it.

I didn’t know about Lynch Syndrome until I got sick and other family members got tested after that. I hadn’t heard of it until I got colon cancer. But my grandmother had colon, uterine and lung cancer. Two of her sisters died of colon cancer. My aunt had uterine, etc. I was the youngest. That’s why I’m now a Young Adult Representative for Lynch Syndrome International.

WHAT HAS SURVIVING CANCER TAUGHT YOU…

About your body?

It can put up with a lot more than I thought it would. A lot of pain that I never thought I could deal with, I dealt with.

About life?

It’s taught me to appreciate things a lot more. Things that I thought mattered – don’t really matter. It changed a lot of my goals as far as what I want to do with my life. I’ve made a huge career change since cancer. I was going into archeology; I’m now going to med school and want to do genetic cancer research.

About family?

They’ll be there for you when other people won’t and put up with with a lot of your crap. I was a horrible patient; I don’t tolerate pain well.

How has cancer changed your life for the better?

It’s why I met my husband – he is a cancer survivor too and was a good friend through it all. Cancer has made everything more beautiful and more fun, and life means so much more.

Do you do anything now that you didn’t thanks to cancer?

I white water kayak thanks to First Descents. Also, after treatment I picked up ballroom dancing. It was one way of doing something active that didn’t kill me and it got me out of the house.

What do you hope your message and survival story will do for others?

I hope people realize colon cancer is not just an old person’s disease. If you have symptoms, see a doctor. Doctors, if a young person comes in with the symptoms, don’t not treat them because they’re young. I hope people don’t shy away from getting checked. If you catch it early, it’s so easy to have the rest of your life. I live a pretty normal life now.

RANDOM INFO ABOUT REAGAN

What do you do? I am in grad school and am a patient speaker about Lynch Syndrome. My mom and I also do thermography screening for early breast cancer – thermal energy can show vascular flow to a tumor.

First job ever? Zaxby’s fast-food restaurant

Hobbies? White water kayaking, writing, oil painting, camping – outdoorsy stuff.

Where are you from? Mobile, AL

Phobias? Pickles

Celebrating My Five Year Cancerversary

by Belle Piazza

This past weekend we celebrated my son’s 10th birthday and my five year cancerversary. Except of course that I didn’t really ‘celebrate’ my cancerversary more so than I acknowledged it. Five years ago, the day before my son’s 5th birthday, we received the call from the surgeon’s office confirming the pathology results from my colonoscopy. Yup, it’s cancer. We proceeded to celebrate Michael’s 5th birthday with friends and family and watched on as the children ate cake, played in a huge leaf pile and opened presents; oblivious to the dark cloud that encompassed the grown ups nearby.

Five years later I saw no need to make my cancerversary the center of attention during my son’s 10th birthday celebrations. It was a busy weekend for us. My daughter had a Halloween party Friday night, the whole family attended a Halloween party together on Saturday night and Sunday we planned to celebrate my son’s birthday with his best friends at a jump house, then a BBQ back at our house. And as the saying goes, the best made plans of mice and men often go astray.

To begin with, my daughter had a mild case of the flu off and on for the past two weeks. This caused concern among some of the parents whose children were to attend my son’s birthday celebrations. Some parents are so paranoid of germs that they pass out hand sanitizer like beads at Mardi Gras and if they thought they could enforce it, would have their children wear face masks at school during flu season. They avoid Wal-Mart, shopping carts, public bathrooms and any play structures located inside a fast food establishment. Others are so blasé when it comes to germs that they throw measles parties, share sippy cups and probably even double dip at cocktail parties. Most fall somewhere in-between. In any event, my daughter’s illness had some influence on our weekend.

Friday night was a go – the mother was fine with the germs. Bring em on. Short of my daughter puking during the party, she was fine having her there. Awesome. I suggested my daughter take it easy as we dropped her off in the middle of a bunch of screaming costumed tweens and high tailed it out of there.

The party we attended Saturday night as a family was great, other than us staying way too late. I was the Fortune Teller. I let every kid at the party get their germy hands all over my tarot cards. We shared much that evening but I assure you I was not a double dipper and only drank from my own wine glass. We finally rolled out of there shortly before midnight with a car full of kids to take home. I have no idea where the time went but we sure had fun.

Sunday morning as we drove to the jump house I knew I’d pushed it by the deafening sound of silence in our car. My kids were exhausted from staying up so late and my husband was nursing a hangover. At the jump house the other parents cautiously approached us, discreetly scoping out my daughter for signs of a scarlet letter on her forehead, a possible indication of a fever. I guess she wasn’t glowing red, as the kids descended on the jump house like a herd of stampeding elephants and no one stopped them. The kids all had fun, my husband was cranky, as he always is in the mornings – with or without a hangover, and my son had several meltdowns for no good or logical reasons whatsoever. Business as usual.

For various reasons no one was able to attend the BBQ at our house afterwards so we decided to scrap that idea and headed off to downtown Portland instead. All of us got soaking wet walking from our car to the restaurant, despite having plenty of umbrellas, which were all safe and dry in the car. I don’t know why, but people who live in the PNW rarely use umbrellas. I succumbed to the crowd mentality. And I got wet.

During lunch at P.F. Chang’s, my son tried to pick up a huge chunk of orange chicken with his chop sticks. The chicken chunk flew out of the chop sticks, bounced off his sister’s chest, and landed squarely under the table. As if this wasn’t enough reason to cry, my husband yelled at him for not practicing at home with chop sticks when he had the chance and was unwilling to offer him a refresher course. I ordered my third margarita.

Our next stop was Powell’s Book Store, which if you’re ever in Portland, you have to visit – even if you don’t like books or are illiterate because it’s just that cool. My son wanted a diary to write in, which infuriated my husband who thinks he should call it a journal or my son will get bullied at school for using a girly word. After three margaritas at P.F. Chang’s I didn’t care what he called it.

By the time we left Powell’s it was pouring rain and we still had to walk to our car in the parking garage two blocks away. If we weren’t wet before, we were now. My final idea to celebrate the day was a stop at Voodoo Donuts, another Portland landmark. As we did a drive by of the donut shop we saw a long line of people, waiting outside to get in. They all had umbrella’s. Holy crap. For Northwesterners to use umbrella’s could only mean one thing – that line wasn’t going anywhere fast. Without telling the kids what we had planned, we discreetly drove by the donut shop and hopped back on I-5 to return home.

Once we crossed the Columbia River and were back in Vancouver, we stopped at Krispy Kreme and let each kid pick out a donut. My husband wanted to stop at Starbucks for a Coconut Crème Frappuccino, which to me seemed like a girly drink, but after the diary vs. journal debacle I decided to keep my comments to myself. About this time of day, late afternoon, Stephen was beginning to get over his fatigue and hangover and wanted to go see a movie. But I was done, so we called it a day. As I drove back to our house I could feel that familiar, warm ticklish feeling in my abdomen. No, not the margarita’s, but a huge gush of output from my colostomy slowly edging its way under the seal of my bag. Oh joy. At least we were almost home.

When we arrived home, after cleaning myself up, I frosted the pound cake my son requested for his birthday and stuck some candles on it. We all sang happy birthday. No one except me finished their piece of cake because they all said it was too sweet. Seriously? My husband asked if I wanted a glass of wine, but I declined. We sent the kids to bed and watched the latest episode of Dexter on recorded T.V. I declared Michael’s birthday weekend a success and more importantly – OVER! I was birthday’d out.

But I did it. Despite a few glitches, I managed to pull off a fun birthday experience for my kiddos and I survived living 5 years with stage 3c rectal cancer. I didn’t celebrate my cancerversary because I don’t believe cancer is worth celebrating. Survival is worth celebrating, but I don’t want to just survive, I want to live. I want to live with my beautiful family. My husband, who is cranky in the mornings, smokes too much and sometimes parties a little too hard. My son who struggles so hard to control his sensitive emotional side. My daughter who is a classic “Tigger” and I just adore. All of our crazy and wonderful friends. In my own way I DID celebrate my cancerversary. By living as if I didn’t have cancer. Sure, I pooped out when it came time to catch a late movie, but otherwise, I made it through. I survived. And that’s the best feeling ever.

Meet Miss November | Paige Hartmann

Yes, it’s true. This beautiful gal that’s featured as Miss November is a survivor of colon cancer… diagnosed at age 21. The Colon Club was thrilled to meet her and have her model for us in the 2012 Colondar. Read on to learn more about Paige!

The BASICS

Name: Paige Hartmann

Diagnosis: Stage III rectal cancer in October 2009.

Age at Diagnosis: 21

ON SURVIVING CANCER:

Where were you when you found out you had colon cancer?

I was in the hospital; they thought I had Crohn’s disease. They came back and said it wasn’t Crohn’s, it was cancer.

How did you feel?

It was a huge shock, not what I expected at all. It didn’t really sink in and it took me awhile to process what they had said. The pills I was afraid of when I thought it was Crohn’s didn’t seem as bad when I found out it was cancer.

What were your symptoms?

Rectal bleeding, really bad stomach pains and I was really tired. I had problems going to the bathroom – doctors thought it was IBS or other typical things they thought would be in symptomatic of a young girl.

What did your treatment involve?

Six months of chemo and laparoscopic surgery that removed all of the tumor.

Worst thing about treatment?

Being the youngest person in chemo. Every time I went there were people were at least 60 years old there asking me if I was in high school – thinking I was 18. It was hard not having anyone there who could relate that was around my age.

What got you through cancer treatment? Any goals or mindsets that plowed you through?

I got diagnosed the fall semester of my senior year of college. I stayed in school and finished treatment. I just graduated a few months later – wanted to finish school and not stop.

Does cancer run in your family?

No.

WHAT HAS SURVIVING CANCER TAUGHT YOU…

About your body?

To listen to any symptoms or signs and not ignore them.

About life?

It’s a lot more precious than I thought. Before cancer, I was always looking for something else; this has helped me live more in the moment and enjoy things.

About family?

My family was there through all of it, I couldn’t have gotten through it without them. They were a really important support system to have, sick or not.

How has cancer changed your life for the better?

I really do enjoy every moment. You don’t think about that when you’re younger and it’s sad that something bad has to happen to think of life in a different way. Even though it was a negative situation, it’s given me a more positive attitude.

What do you hope your message and survival story will do for others?

I hope it will help younger people relate to someone; that’s not something I had when I was going through it. Even though I had my family, it would have been nice to relate to someone around the same age.

RANDOM INFO ABOUT PAIGE

Job? mental health counselor

First job ever? Friendlies restaurant as a waitress

Hobbies? Going to concerts.

Where are you from? Worcester, MA

You just look cool. What other things about you make you cool? I change hair color all of the time. Oh, and I have 7 tattoos.

Taking it one Day at a Time

Here at The Colon Club we have members of all ages, races, religions and walks of life. We have men, women, fathers, mothers, children, spouses, brothers and sisters. Our one common connection, sadly, is that colorectal cancer has touched our lives, directly or indirectly. When I think of who I am, “mother” is the first word that comes to my mind. I am the mother of two children, ages 10 and 12. Sure, I’m much more than that, but that’s the label that comes to mind first.

I got the phone call from my doctor, confirming that my pathology report revealed cancer the day before my son’s 5th birthday. A day I will never forget. Its been almost five years since that call and by the grace of God, I’m still here. Every time a new member introduces themselves to our group my heart breaks to know that another family is facing what ours deals with every day. Every time a new member introduces herself as a mother, my heart breaks that much more.

It’s not that mothers have any special status that makes our diagnosis any more heart wrenching than the next person. Rather, it’s what I can most relate to, being a mother myself. And so, I’ve been thinking about what advice I would offer another mother who is just beginning her cancer journey. If I could give her my top 10 pieces of advice, what would they be? Well, here’s what I would offer.

1. We’ve all heard the saying ‘one day at a time’. But when dealing with cancer, sometimes one day at a time is too overwhelming. So take it one hour at a time. Or one minute at a time. Or even one second at a time.

2.Not getting enough sleep? Nauseas? Pain? If you feel bad physically, all your problems will be super sized. Do whatever is necessary to manage your sleep deprivation, pain and/or nausea. If you can’t get on top of one or more of these issues, be aware that these physical ailments are likely contributing to how you feel mentally and emotionally.

3. Young children want to know how cancer will affect them – today, right now. Answer their questions honestly but don’t go into details that they don’t need to be bothered with or in depth conversations that are better had with adults. Let them know they will be taken care of. Let them know they are loved. Let them know your doctors and nurses are doing all they can for you right now. If you get all that out, chances are they will have already moved on to “what’s for lunch Mom?” before you can finish your next sentence.

4. Take pictures. If someone wants to help and they don’t know what to do, ask them to take up a fund to pay for some professional pics of you and your family. I’m not talking polaroids here, I’m talking fix your hair, put on your make up and best clothes and get some kick ass professional pics of your family. I had this done and even though I can’t bear to look at them right now, I know they are there for my family – and at some point, they will be treasured family heirlooms.

5. Write. Blog. Journal. Scribble with a crayon if you must. But start writing. It really doesn’t matter what you write. You can write about your disease, your feelings, your kids, your hopes, your fears, whatever. I have a little book titled “Mom, Share Your Life with Me”. It prompts you to fill in all sorts of information about yourself that you then give to your children. They have the same book for Dad’s, Grandparents, etc. Amazon carries them all.

6. Have a plan in place for who will care for your children if you are no longer here. Discuss it with your spouse, your parents, whoever needs to know. Have a “Plan B” and make sure it’s legalized – i.e. a will.

7. Recognize the inner strength your children possess. Children are so much stronger than we give them credit for. It doesn’t mean they won’t feel the pain of losing a parent, but know that they are strong and they will persevere. Watch them. Observe how they figure things out. Be amazed, and impressed and proud of how capable they are.

8. Try to not dwell on the darkness cancer can bring to your life or the lives of your children. I’ve never lied to my kids, but I focus on what I’m doing to stay alive – not the statistics or the likelihood of whether I may or may not be here in another 5 years.

9. Distract yourself with the mundane. Play with your kids. Have a dinner date with your husband. Pull weeds. Wash the dishes. Read a book. Have coffee with a friend. Bake cookies. Go shopping. Volunteer. The more ‘normal’ things you can incorporate into your daily routine, the more it helps take your mind off the cancer.

10. As devastated as you may feel, remind yourself that it could always be worse. Not that you celebrate the fact that someone else is suffering to a greater extent than you are, but recognize that things could always be worse. My mind can create scenarios that would frighten Stephen King – I know as bad as things seem at times, they could always be worse.

Any of this sound familiar? If so it’s because much of it I learned right here from the members (mothers and others) at The Colon Club. And even if you’re not dealing with cancer, you have to admit, this is good advice. Whatever challenges you face, always know that you don’t have to face them alone. Don’t be afraid to reach out for help. It makes everyone stronger in the process.

Meet Ms. October | Staci Wills

Now although she does have striking resemblance to her, October’s model is not Barbara Eden from I Dream of Jeannie. It’s Staci Wills, a brave rectal cancer survivor from Canfield, OH. Read on to learn more about this funny, charming survivor we’re proud to call one of our own at The Colon Club.

The BASICS

Name: Staci Wills

Diagnosis: Stage III rectal cancer in July 2009.

Age at Diagnosis: 32

ON SURVIVING CANCER:

Where were you when you found out you had colon cancer?

It was at the colonoscopy.

How did you feel?

Fine. My husband cried; I didn’t cry. When I asked about more babies and he told me I’d be sterile, that’s what I cried. Cancer seemed like an inconvenience and something to get through. I didn’t have a hard time dealing with cancer, I had a hard time dealing with how cancer affected my life.

What were your symptoms?

Rectal bleeding was the number one symptom. I had lost weight, was anemic and felt tired all of the time. I had every symptom of rectal cancer, but we didn’t put them together and instead saw them individually.

What did your treatment involve?

Six weeks of chemo and radiation pre-op; 2 surgeries – had an APR and 2 days later had another surgery because I had a small bowel obstruction. From there, I ended up in cardiac unit because of side effects of radiation. I came home on the 2^nd b-day of our son.

Worst thing about treatment?

Feeling like I was putting my life on hold. I wanted to do things, be with my kids and volunteer. I wanted to be up and and active, and I physically couldn’t at times.

What got you through cancer treatment? Any goals or mindsets that plowed you through?

My faith; I started and ended every day with prayer. And I prayed all the way through it. So did my husband.

Does cancer run in your family?

Yes – genetic testing that created my family tree showed that on mom’s side – there is a gastro cancer in every generation. Several bouts of colon cancer. Not until it was on paper did we realize it ran in the family.

WHAT HAS SURVIVING CANCER TAUGHT YOU…

About your body?

To listen to it; don’t overlook it. Don’t take it for granted. When you have something, get it checked out. I feel at times like my body has failed me; I am 34 years old and I deal with stuff 80-year-olds deal with. I have so many things in common with my 80-year-old grandparents. Sometimes I look at my friends who are my age and they get it; others don’t get it.

About life?

Enjoy it, and look at it day-by-day. Be grateful even more than you enjoy it.

About family?

They’re the most important thing on the face of this earth. They’ll be there for you no matter what.

Do you do anything now that you didn’t thanks to cancer?

Poop out of my front – haha.

I’m definitely more aware of what it is that I put into my body, what is around me. More cautious of environmental factors. It’s made me more aware and more humble.

How has cancer changed your life for the better?

It goes back to being grateful – I’m so thankful for everything in my life. So thankful and I feel blessed for the people God has put in my life.

What do you hope your message and survival story will do for others?

Hope to save the heartache of one young mother who spots blood, has constipation or fatigue. I hope it saves her the heartache that I’ve been through and help her by having her find it earlier.

They said it took 5-7 years for my polyp to develop – we could have found it earlier. Had we looked at the symptoms closer, I might not have had to go through anything.

How is life with an ostomy?

Perfectly fine. My only complaint is that there are not bathing suits made for an ostomy. I need a high-wasted Marilyn Monroe bikini; I’d be good to go. It’s easier, especially during radiation. (READ MORE – Staci found a bathing suit!) When they told me I’d have an ostomy, I said – “So you’re telling me I’ll have my life if I have a colostomy.” From there I was perfectly fine with it.

RANDOM INFO ABOUT STACI

Job? I’m a stay at home mom; I have my Masters in curriculum. Before I had my kids I taught 4th and 5th grade for 5 years.

First job ever? Parking cars at the Canfield Fair in 8^th grade

Collect anything? Vera Bradley bags

Hobbies? Writing & blogging. Pre-cancer I would bike ride and horseback ride.

Where are you from? Canfield, Ohio

Quirks? I got a labeler for Christmas; I’m OCD to no end and love to organize. Oh – and I won’t go to movie theaters – I’m not into germs.

Just My Cup of Pee

by Belle Piazza

So today was chemo day. Same old same old. My routine started with the lab technicians drawing a blood sample from my port. Sometimes this goes smoothly, other times the port doesn’t want to give blood and I end up having to contort my head and arms in poses reminiscent of an old fashioned T.V. antennae until we find the right position and the blood starts to flow. Today I was lucky and I didn’t have to perform any odd yoga or tai chi poses. In fact I held myself as still as a statue for fear the slightest movement would cause the port to shut down as it usually does.

I told the lab tech I needed to give them a urine sample in addition to the blood since I was scheduled to receive Avastin and my urine, which gets checked every other treatment, wasn’t checked the last time I was in. The tech said it wasn’t on the orders, so the chemo nurses would have to check into it and send a sample back if necessary. Okay. Back to the chemo treatment room I went and selected my usual yellow recliner by the window. My infusion only takes 30 minutes, but I’m usually at the center for 3-4 hours by the time it’s all said and done so I come prepared. Books, magazines, a ham sandwich, grapes and a banana all packed neatly away in Michael’s Super Mario Brothers lunch box. After seeing my doctor and getting the okay to go ahead with chemo, one of the nurses in the chemo room handed me my little plastic cup, individually packaged wet wipes and pointed me in the direction of the closest bathroom.

“Just give it back to me or any of the nurses out here” she said. Okey dokey. I returned with said urine sample in the clear little plastic cup and handed it to the first nurse I saw. As I handed her the cup of pee, I casually mentioned that my name wasn’t on the cup. “I’m Piazza, Leora” I told her.

O – M – G. “There’s no name on this cup” she exclaimed with shock and disbelief.

“Yes, but it’s mine” I told her; though you’d think this was overstating the obvious as why else would I be handing her a cup of pee. She continued to stare at the unlabeled cup as if I just handed her a pile of dog poop.

“Why isn’t there a name on here – why didn’t anyone put a name on this cup?” she asked to no one in particular, but loudly enough for not only every other nurse in the room to hear, but patients as well.

“It’s mine – give me a pen and I’LL write my name on it” I told her.

“No, that’s all right” she said – again, to no one in particular and certainly not to me, in a dismissive tone. “Who gave it to you?” she asked me accusingly.

I felt like saying “who the hell cares?” but I said I didn’t remember. ”She was blonde….I think” I told her. I can do this because I have chemo brain and the nurses know it. You can’t argue with chemo brain – it’s pointless; but then again so is making such a fuss over a cup of pee with no name on it. And by now I was really getting annoyed and I kind of wanted to mess with her head.

At this point half the patients in the chemo room are watching me, waiting for my reaction – to which I roll my eyes and throw my hands in the air as I walked back to my yellow recliner. So much for modesty, discretion and patient confidentiality. I can see from the muffled laughter of the patients around me that at least I’m not the only person that is beginning to find this a rather odd reaction from a nurse who has just been handed a cup of pee. I settled in to read my magazine, not really caring what they did with my cup of pee or who ended up having to write my name on it. But she just wouldn’t let it go.

“Who gave out this cup?” she asked – again in a voice loud enough for the whole room to hear – as if we were all going to point our fingers at the perpetrator. “I mean why didn’t they label it?”

I felt like telling her I wasn’t a professional athlete so really, why would I lie when I told her it was my pee? “IT REALLY IS MY PEE!!!!” I wanted to shout, as the nurse who originally handed me the cup buried her head in her computer screen and pretended not to hear what was going on. This left the remaining nurses, who weren’t busy with patients, to try to piece together the crime scene.

At this point even I was beginning to question whether it was really me who peed in the cup and whether anyone was ever going to believe it was my pee. I wondered how hard it was to have to write a name on a cup that was already filled with pee versus an empty pee cup. And more importantly, were they ever going to run the lab work so I could get my chemo? I was beginning to worry that I only packed my lunch and not my dinner as well.

This back and forth about who handed me the cup went on for some time, but like I do with my kids, I tuned out the conversation so it was just white noise to me. Ultimately, I did receive my Avastin infusion, so I have to assume that at some point my suspicious cup of pee was properly labeled by someone. Maybe they delegated it to the lab techs, who should have handled the whole thing in the first place. So word to the wise – if a nurse hands you an empty plastic cup to pee in and your name is NOT on that cup….do not, I repeat, DO NOT accept said cup!!!! Remind the nurse that your rights as a patient include being provided a cup that already has your name written on it by a person authorized to handle such responsibilities. Need I say….someone will get very pissed off if this is not handled correctly!

Women’s Ice Hockey November 2nd thru 4th, 2012 to benefit The Colon Club!

Calling all hockey fans! This November in beautiful Lake George, NY, there will be a 3 day womens hockey tournament to raise money for The Colon Club. The games begin Friday evening, November 2nd at 5 p.m. and will run till close to midnight. Saturday morning, November 3rd, the excitement begins again at 7 a.m. and will continue till close to midnight. Sunday, November 4th is the final day, with games beginning at 7 a.m. and running till late afternoon.

Spectators are welcome to come out (there is no entrance fee) to watch the games and cheer on your favorite team. The facility has a restaurant and bar in a warm area, if it’s too chilly for you down near the ice.

Each team (there are 16 teams from throughout the northeast signed up plus a waiting list) has donated a basket representing their area. The baskets will be raffled off with the drawing being held at the arena Saturday night at 8 p.m.

This event has been organized for the sole purpose of raising money to donate to The Colon Club. If you’re in the area and can make it to this event, please come out and show your support!

Further details can be found at the website http://www.adktournaments.com/

Just click on the pink “X-Checking Colon Cancer” icon.

Many thanks to Tara McMillen, Tournament Director, for donating her time and energy to organizing and running this event!!!

Meet Mr. September | Adam Benlon

Turning the calendar to Mr. September makes us smile anyway, but especially because we get to stare at Adam for the next month. Not only is his story of survivorship inspiring, but his jokes and humor make him extra fun. Enjoy getting to know this latest colon survivor!

The BASICS

Name: Adam Benlon

Diagnosis: Stage IIIc colon cancer on August 18, 2009

Age at Diagnosis: 29

ON SURVIVING CANCER:

Where were you when you found out you had colon cancer?

I was laying in the hospital after my colonoscopy.

What were your symptoms?

Headaches, exhaustion, tiredness and extreme anemia.

What did your treatment involve?

Colon resection removed 2.5 feet of colon and the tumor. They couldn’t remove all of the tumor, so I had 5.5 weeks of radiation, wearing a chemo pump with 5Fu the entire time. Treatment for 5 days/week. 12 treatments of chemo (6 months).

Worst thing about treatment?

The numbness in the hands and feet. Going through it in winter; the cold sensation.

What got you through cancer treatment? Any goals or mindsets that plowed you through?

My wife and having a new baby at home. It was something to keep me fighting.

Does cancer run in your family?

Yes – my mom’s had breast cancer; brother’s had melanoma and my grandmother had colon cancer.

WHAT HAS SURVIVING CANCER TAUGHT YOU…

About your body?

Trust your body; know when something is wrong. I knew something was wrong and they were trying to figure it out, but I should have been more proactive in doing some things.

About life?

Enjoy every day.

About family?

You realize how much support you need to go through something like this, how important family truly is and how much people care about you.

How is your health today?

Good, probably the healthiest I’ve been in a long time pre-cancer.

Do you do anything now that you didn’t thanks to cancer?

I work out a lot more regularly; I try to eat organic. Eat healthier.

How has cancer changed your life for the better?

It’s made me appreciate the small things in life. I used to be a workaholic, run with my hair on fire. Work 7 days/week, no breaks. Now I’m a lot more laid back than I used to be. Not as intense about certain things, used to be intense about job/work/business, and now what happens, happens.

What do you hope your message and survival story will do for others?

I hope it gets the word out there and encourages people to trust what they’re feeling. Don’t automatically assume everything is trying everything possible. Get second opinions. Really focus; know what your body is supposed to do. If things change, go find out why. If what they tell you doesn’t make sense, go get a second opinion.

RANDOM INFO ABOUT ADAM

Job? District Manager at Toyota

Collect anything? Change – I always pick up pennies; I have 5-gallon bucket in my closet.

Hobbies? Anything outdoors – boating, working out, going to the gym every morning 5am, playing with my kids, spend all my spare time with them. I’m a car guy – don’t work on cars like I used to. But actually, I used to fish a lot too and do tournament fishing. I bought a boat before I bought a car. I’m also very patriotic.

Where are you from? Shawnee, Kansas

Claim to fame? I’m a professional comedian that never made it. Oh – and Betsy Ross is a long-lost relative of ours.

Fist job? Worked concessions at a movie theater.

A Jarring Ride Back to Reality

I have been blessed as a survivor. All the people I have met through various colorectal cancer groups are survivors, and many are what I call “thrivers.” Colorectal cancer has hit them hard, but they just keep going. The survivors I have met are just that – survivors. Most of my friends through these groups are either getting on with their life, are learning to live a new “normal” life, or are years past their diagnosis.

I can read. I know how to research, and I understand statistics, but somehow my group of friends has been able to beat the odds and prove the statistics wrong. Within the support groups I frequent, I have known of others for whom the battle has ended much differently than my own. Off the top of my head, I can immediately name at least five people who have ultimately lost the battle with this nasty disease. But naming someone and knowing someone are completely different.

Until recently, I haven’t had any personal experience with friends having a reoccurrence or losing their battle. Before this week, I could empathize with any colorectal patient or survivor out there. I have been in their shoes. I have felt those same feelings, and just the mention of certain chemo drugs still makes me sick. But I have never heard the phrases, “it’s back,” “it’s terminal,” or “there’s nothing else we can offer.”

I’ll admit that I like to wear my rose-colored glasses, but in the last two weeks the tint of those glasses has begun to wear off. Recently I heard from one of my fellow “Barbie Butts” that cancer has hit again, and not long after that shock came another. One of my friends had gone terminal. It was no longer a question of prolonging life, but rather coming up with a plan to live his remaining days in comfort, even if that meant taking an elephant’s dose of pain meds, living in and out of lucid moments, and yet trying to be “in the moment” as much as possible. I’m grateful those painful days are behind for my friend, but my heart is now scarred forever by the passing of this true warrior.

So now that my rose-colored glasses are no longer tinted, I can see this thing we call colorectal cancer for what it truly is. It is no longer just a hurdle I jumped over, a turn my life has taken, or a battle I’ve fought and won. It is now a lurking beast – always on the prowl, hiding in the darkness, and forever hurting those it meets.

Today, I wake praying for the broken hearts of those who have been left behind, and for our hearts that will never completely heal. But it is with fond, happy remembrance that I am able to smile and laugh when I think of my dear friend. Cheers to you, Bill!

~ Staci

Musings on my patient/caregiver relationship

by Staci Wills

From the day I was diagnosed until the day I rang the closing bell on chemo, I tried my best to avoid hearing the statistics, small percentages, possible side effects associated with my cancer, but I also avoided other colorectal cancer patients. That sounds harsh, but I didn’t want to hear what could, might, or would happen to me. I didn’t want to hear what the statistics said about Stage III rectal cancer. I didn’t want to hear what I would experience before it happened. I wanted to go through the battle with unbiased expectations, and work through things as they arose.

My husband Chris, on the other hand, was quickly getting a Google medical degree and becoming a Colon Club addict. He knew better than to tell me what others were describing, but if ever asked he could quickly give me the opinion or describe the experience of five colorectal patients. In fact, it was my husband who burst into the bathroom one day to announce that I had to perform the “tampon test.” At that moment, I was pretty sure the stress was too much for him and he was losing his mind. Then he explained that radiation can cause vaginal stenosis, and I needed to insert a tampon to make sure that wasn’t happening.

I understood early on that Chris and I had different needs during this battle. I needed to keep my focus on my experience, and not overwhelm myself with the details of reality, and he needed to emotionally prepare each step of the way and familiarize himself with all the possible outcomes ahead of time. In short, I wore earmuffs and buried my head in the sand, and he became our local authority on colorectal cancer.

It wasn’t until I finished my last round of chemo that I finally wanted to hear what other patients had been describing, and then I wanted to know everything. I quickly found out why my husband was on The Colon Club forum so often, and I realized that other people had my same concerns. How long would the lingering side effects last? When would I feel like myself again? Why did I feel so awful? Why did everything still seem to hurt? Why did my joints ache so badly? Why did I have so much unexplained pain in my rectum – after all, I didn’t even have a rectum anymore! I was ready to jump back into life, but my body was only ready for baby steps, miles away from even thinking about jumping.

One year later, at the 2012 Colondar photo shoot, I met an amazing group of people all affected by colorectal cancer. For the first time I met other young women who had the same concerns and issues that I did. I could openly discuss menopause with a 25 year old, and she “got it” For the first time, someone understood the heartache of losing my fertility to a cancer that had nothing to do with my ovaries. In this group I did not feel like I was an oddity – I felt normal again. For the first time, I was able to talk about anything and everything without having to provide an explanation for background and context.

The photo shoot weekend made me realize how important it was and is to have that connection with others. While not everyone will be as lucky as I was to have the opportunity to be one of the Colondar models, it’s important that one have people with whom they can discuss the entire cancer experience. If you don’t have that group yet, please keep looking for it – there are people who have “been there, done that” and will absolutely “get it” when you talk about things that normal young people would never even consider!

Hair Today Gone Tomorrow

by Belle Piazza

As I left the house the other day to get my nails done, I told my husband I’d probably come back with no hair. I’m going to do it I told him, I really am. And I figured I better get my nails done first so I had some identifying feminine mark on my body. Two rounds of Irinotecan several months earlier had done its damage. Since then, my hair has continued to thin. And thin and thin and thin until I started to resemble Golem from Lord of the Rings. On top of that I was due for my 1st round of Erbitux in a few days and I just knew that the dreaded rash would cover my face and scalp, the same as it did after my one round of Vectibux. The rash not only looks frightening, but it really, really hurts. I wouldn’t be able to brush my hair – so if I wanted my hair gone, it was now or never.

Several friends had offered to shave my head for me when I was ready, but I opted instead to go to a salon. It’s not that I thought I’d get a better buzz at a salon, rather I thought I’d be able to keep my emotions intact if I did this in public versus the privacy of my own home or one of my friends homes. Since my normal stylist was booked for a few days, I went to the barber shop where I take my son to get his hair cut.

I really thought I could do this. I thought I could hold it together, especially in a room filled with men. But I couldn’t. I was barely able to make the request at the front counter and once I sat down in the chair, I couldn’t hold it back any longer. I started to cry. I felt like such an idiot. You’d think I could just put on my big girl panties and do what needed to be done. But my big girl panties just weren’t big enough and I cried like a baby. I think I even snorted once I was sobbing so hard. This plan was shear genius (pun intended). The woman cutting my hair, Elissa, could not have been kinder or more compassionate. It was one of those instances where God directed me to just the right person to get me through this latest challenge.

She talked to me the entire time about the work she did in the hospital as a transporter in the radiation department, she talked about losing her father to alcoholism and much more. But I heard little of what she said. All I could do was stare at myself in the mirror in shock and think about how much I looked like my brother, who is in the Air Force. And how much I looked like my sister, who is a lesbian. Not that there’s anything wrong with being in the Air Force or being a lesbian, it just wasn’t the look I was going for.

For heavens sake I told myself, it’s not like I had hair like Farrah Fawcett. Now when she lost her hair, THAT was something to cry about. My hair was never that great to begin with; but it was MY hair and cancer was taking it away from me. I reminded myself I live in a great part of the country to be a woman with a crew cut – the Pacific Northwest. I live 30 minutes north of Portland where “Keep Portland Weird” isn’t just a bumper sticker, it’s a way of life. If you watch the IFC show “Portlandia”, I assure you, it is spot on. Backyard chickens in Portland are as common as swimming pools in Phoenix. People rent out goats for weed control, recycling is the rule, not the exception and downtown doesn’t just have lanes for bikes, they have their own “boxes”. In the Portland area, a woman with a crew cut is just not that unusual.

The next day I showed up for a doctors appointment wearing a bandana over my head. As I approached the glass door I could see my reflection. I looked like Aunt Jemima with glasses. Eww. Again, not the look I was going for. At home I put on a pair of dangly shell earrings – hmmm…..the tribal look. Later, while my son was at dance class I picked up some temporary hair color – bright blue. But I haven’t tried it yet. I’m afraid it’s going to stain my skin blue – not just my hair. The directions say you’re supposed to brush it onto your hair, and I don’t have any hair long enough to brush it onto.

Over the past few days, I’m slowly adjusting to my new look. It’s not the look I’m used to seeing when I look in the mirror. We all have our own image of what makes us “us”. We get used to that look and most of us, if pressed, would probably admit that they are generally happy with their appearance. Sure, there may be some little thing you’d tweak given a chance, but overall I think most people are happy with their “look”. So when a “look” is changed so drastically, like losing your hair, it’s a shock. But we’re survivors. And we adjust, because we have to. Whether it’s losing our hair, our rectums, our colons, bits and pieces of other body parts or ultimately, losing our lives. We adjust and we move forward. It may be awkward and painful and frightening, but we do it because there’s really no other option.

As a younger woman I always wanted hair like Farrah’s. But even Farrah lost her hair and sadly, her life. Life is too short to spend time mourning the loss of ones hair. I’ll give myself permission to take the time I need to adjust. I might end up with blue hair or I might not. I may continue to wear a bandana when I go out or I may go commando and join the Portland weird crowd. When I tell my 11 year old daughter this, she salutes me and says “sir, yes sir!” and then laughs. It’s good to see her smile. I need to make one more trip to the barber shop to thank Elissa for her kindness. And to have her cut my 9 year old son’s hair – because he wants a hair cut just like Mom’s.

Meet Miss August | Melissa Bates

Woo hoo! We are so excited to introduce you to this beautiful young woman, Miss August! Not only is she so cuper cute, but she’s also got one of the biggest hearts you’ll find. Read on to learn a little bit more about Miss August, Melissa Bates.

The BASICS about MELISSA BATES

Name: Melissa Bates

Diagnosis: Stage III rectal cancer on October 2, 2008

Age at Diagnosis: 20

ON SURVIVING CANCER:

Where were you when you found out you had colon cancer?

I was on a bus at school. It was really crappy. I had a breakdown on the bus. I felt like my world was coming to an end.

What were your symptoms?

Basically everything. I was in so much pain. The tumor was pressing against my nerves. I couldn’t sleep. I wasn’t hungry but felt full all of the time. I had rectal bleeding and a change in stool.

What did your treatment involve?

28 radiation treatments, surgery and chemo

How did this impact your fertility?

Originally the oncologist didn’t bring it up my fertility or saving it as an option, but I had gone online to research and learned about the possibility for fertility preservation. I asked my doctor about it and she said I didn’t have time and it wouldn’t be a wise idea. But, I went against her recommendations and did it anyway, even though she wanted to start chemo right away. She told me without treatment, I wouldn’t be around in 6 months.

I held off treatment and went to Chicago to bank eggs. They told me it didn’t go as well as it normally does, but they did save some which are frozen now. I now have them if I potentially need to use them in the future. I felt like going against my doctor’s advice was the right thing for me to do at the time, and I’m glad I did it … even if I don’t end up using them.

Worst thing about treatment?

Putting my schooling on hold, that was my sense of normalcy. My energy was wiped out, and I had so many thing I wanted to do but wasn’t able to do them. I wanted to scrapbook and hang with friends but all I could do is lay in my bed.

What got you through cancer treatment? Any goals or mindsets that plowed you through?

My family and my friends. My church family – all of their support. My horses – I kept looking forward to showing them again.

Does cancer run in your family?

Not genetically; other people have had cancer – skin cancer.

WHAT HAS SURVIVING CANCER TAUGHT YOU…

About your body?

To listen to it. It’s amazing and it’s a lot stronger than I thought it was.

About life?

Life can be over the next day. Try not to live with regrets; live everyday as it comes and live it to the fullest. If there’s something you want to do – do it. One thing cancer helped me learn was to take the time to enjoy life and don’t go rushing through it all of the time.

About family?

They’re really important and they’ll always be there no matter what.

About faith?

My faith has helped get me through everything. I know God has everything planned out and knows the plan more than we do.

Do you do anything now that you didn’t thanks to cancer?

Journal

How has cancer changed your life for the better?

Meeting several people through this has been a really neat experience and made me a braver person. I speak my mind a lot more than I used to. I think I’m more focused with what I want out of life, I’m more apt to make things happen. Meeting people and hearing their inspirational stories lets me know I can do this.

What do you hope your message and survival story will do for others?

A lot of things! Here are a few:

I hope it will help people going through the same thing.
I hope it will show people that life isn’t over once you have a colostomy
I hope it will show people rectal cancer isn’t an old person’s disease
I hope people will stay on their doctors and if they think something is wrong and the doctor won’t listen – they keep on trying until they find a doctor who will.
I hope people will ask a lot of questions.
I hope people will follow their hearts throughout treatment and do what’s best for them.
I hope people know to believe in themselves and their treatment team and know that a positive attitude helps you through everything.
I hope people will take time to heal; from whatever treatment and not go back to “normal” life too soon.

How is life with an ostomy?

Having an ostomy isn’t as bad as I thought it would be. It’s improved the quality of life that I have. It was basically life or death and I chose life. My ostomy isn’t holding me back from what I want to do.

RANDOM INFO ABOUT MELISSA

Job? I’m a full-time student at Iowa State University

Collect anything? I own horses

Hobbies? Horseback riding, dancing, anything outdoors, camping

Where are you from? Kewanee, IL

Odd tricks or skills? I can weld and have done some woodwork

Losing One of Our Own

by Belle Piazza

July 17th, 2012, we lost one of the great ones. We lost one of our own. We lost Pat Steer, aka ‘Gaelen’.

I first joined The Colon Club in February 2008, Pat joined a few months later in June 2008. I got in the habit of reading her posts whether the topic applied to me or not because I knew whatever she had to say, it would be interesting, intelligent and okay, sometimes a bit controversial. Early on I spoke up in her defense on one thing or another when she was being attacked on the board. She sent me a PM informing me that although she appreciated the thought, she was a big girl and was more than capable of defending herself. Al-righty then.

That didn’t deter me. I always was and always will be a fan of Gaelen’s. At one point I inquired about starting my own blog and she sent me all sorts of helpful links and advice on what to do and not do. So far I’ve done nothing, but I’ve saved the information because I know if and when I do decide to jump into the world of blogging, that Pat has given me the road map I’ll need to do it.

Most people here either loved her or hated her. Some thought that The Colon Club favored Pat and allowed her special privileges. I don’t know why they would, as Pat was just as quick to criticize The Colon Club as to how they should run and moderate their web-site (and didn’t) as she would anyone.

To me, Pat’s criticism and advice were given out of a true passion and desire to help others. She was desperate to make the world right. It was as though it had been such a struggle and a journey for her to understand how things worked, that her mission in life was to clear the path for others so that they wouldn’t have to waste their precious time in recreating the wheel. It baffled her and frustrated her to no end when others couldn’t see the world as clearly as she saw it through her own eyes. I imagined her throwing her arms up in the air, rolling her eyes and banging out a flaming post on her keyboard to anyone who didn’t get the point she was trying to make.

When my recurrence was confirmed just before Christmas 2010, Pat was there to help me through it. She helped me get my head around my situation and plot my strategy. She was my compass. I looked to Pat for guidance, inspiration and support. And she never disappointed me. Meeting her at Call on Congress in March of 2012 was a pleasure and an honor. She was exactly the person I had envisioned her to be, just a little louder. During the event she was awarded the Andrew Giusti Memorial Award. The award is given out annually in memory of Andy Giusti, a former Board member, scientist and colorectal cancer patient to honor advocates who work in the research environment. Pat was a consumer reviewer for the Department of Defense’s Congressionally Directed Medical Research Program in 2011 which funds research for colorectal cancer, among other cancers.

It was awesome to see this amazing woman receive the recognition that she so rightly deserved. But even then, she was beginning to show some cracks in her granite facade.

Near the end I literally winced when I would read Pats posts. The last few months she held nothing back in her tell it like it is fashion. Most of us knew of her situation and I think we gave her a lot of slack. Others with less knowledge, sensitivity or both felt the need to pick up their swords against her. I stayed silent on the board, but would occasionally send her private messages on Facebook letting her know I was thinking of her. I wondered to myself if she was trying to push people away so they wouldn’t reach out to her or feel sorry for her in her final months. Strong, fierce and independent to the very end.

I confess that my psyche has been more than a little shaken by the loss of Pat. We’ve lost many of our own and I mourn each and every one of their lives. But Pat’s passing has hit me especially hard. Pat led by example and I followed her lead. If Pat could do it, then I could too. Whether it was advocating in the legislature or in my own doctors office, I learned these things from Pat. I will miss her knowledge, her expertise, her passion. The Board will go on, but it will be a little quieter and more civil without Pat on the sidelines. Pat was unique and special. In time, the majority of the folks here won’t even recognize her name or know of her at all. Such is life. As for me, a part of Pat will be with me always and I am a better person for having known her. And Pat, in your honor, I will strive to always “Live Life Out Loud”. Good bye my friend, I will miss you terribly.

Cancerversary – When Is It?

by Staci Wills

This week marks my three-year cancerversary – I think? Do you celebrate your cancerversary based on the day you were diagnosed or the day you finished chemo? Three years, in relation to my age (35), is a very short time. Three years goes by so quickly. Major life changes happen in just three years. I remember that when I was 10, I thought I would never be a teenager. At 13, I thought 16 would never arrive. From 18 to 21, I’ll admit that I wasn’t always honest about my age, and from 21 to 24, I graduated college, got married, and began my life as an adult. So many life changes can happen in just three years.

So if I choose to celebrate my cancerversary based on my original diagnosis date, then tomorrow will be my three-year cancerversary. Three years of life changing experiences I had no idea were coming my way. Three years of hurdles I can’t believe I had the strength to get over at times. Three years on an emotional roller coaster.

Three years ago, I was diagnosed with stage III rectal cancer. Just like many rectal cancer patients, I had to undergo preoperative chemo and radiation, surgery to excise the tumor and create a permanent colostomy, and another six months of chemo to complete my treatment. After I completed my treatments, I thought I would be able to jump right back into life, but that was more difficult than I had imagined. Physically, my body had a long road of recovery ahead; emotionally, I hadn’t even begun to heal and I had no idea what was ahead. I was trying to fit back into life with a body I could not identify with. I can remember feeling that “nothing prepares you for the battle after the fight is over.”

At 33, I was living in the body of an 80 year old, and I had some heavy emotional baggage – not only from my cancer journey, but also from losing my fertility because of radiation and being sent into menopause at such a young age. I was a train wreck, physically and emotionally, and I thought I could just jump back into life?!?! Who was I kidding?

Healing would require time and patience. I went through physical therapy not once, not twice, but three times. I can’t count the number of different specialists I have seen to get rid of the leftover side effects of chemo, to check the organ function of those pelvic organs that also absorbed the radiation, and to try to find ways to deal with the scar tissue that seems to be the cause of much of my endless pain. I consider these my hurdles in a long marathon of recovery. I focus on the day all of this will be in the past, and I celebrate each milestone to a complete recovery.

A month ago, I rode my horse for the first time in three years. On the Fourth of July, I ran four miles for the first time since I ended physical therapy (again). Earlier this week, I rode my bike for the first time since my surgery. So much can change in such a short timeframe. This week I will celebrate my three-year (diagnosis) cancerversary as another milestone to a full recovery.

Finding My Voice – Part 3 of 3 – Finding My Inner Voice

Read part 1 of 3 here

Read part 2 of 3 here

By Belle Piazza

As a Colondar Model I was able to meet and connect with people who would later offer me various opportunities to become involved in raising awareness. Some offers I have jumped at, others I have politely declined. I’ve learned that for me to be effective, I need to feel passionate about what I’m doing – AND to have fun with it. If it seems like work, it’s going to repress me. If it seems like fun, I will thrive. As survivors, we need to be selective about how we expend our time and energy. For me, I have very limited quantities of both so I want to make sure my choices are in my best interest as well as in the best interest of those I interact with.

It’s taken me years to refine my technique and I’m always a work in progress. There will always be those whose voices are louder, that reach greater audiences and that speak with words more eloquently than myself. I watch them in awe and admiration taking note of what I can learn from them and incorporate into myself. I’m selective. What works for one person won’t necessarily work for all. But there is always some piece of them that I take with me.

As survivors, raising awareness in an attempt to help others helps not only those you speak to, but it helps you as well. It feeds your soul. I am most comfortable down in the trenches, speaking one on one to people. To Vivian, to the stranger on the street corner in D.C. Although awkward at times, even embarrassing, it’s when I feel I have done my best work. I’ll never know if Vivian got her colonoscopy or why the stranger in D.C. asked to talk to me about Colo-rectal cancer. And you’d think that would leave me feeling as if I had no closure with these people. I can’t explain it, but I’ve never felt that way; in fact I feel just the opposite. I feel I’ve done my part and now it’s up to them to take it from there.

I would encourage you all to find your own inner voice. Listen to it and follow it. It may lead you to high profile encounters or it may direct you to fly under the radar. But whatever direction you are headed, know in your heart and soul that you are doing your life’s work. The less chatter you hear in your head, the more likely you are already headed in the right direction. One person can make a difference in fighting this disease and that one person, is you.

Finding My Voice – Part 2 of 3 – Call on Congress

Read Part 1 of 3

Every March, National Colo-rectal Cancer Awareness Month, I write a letter to the editor at our small local newspaper discussing colo-rectal cancer and the importance of colonoscopies. Every year it gets published. I live in a small town and most all letters to the editor get published, including the ones that preach about the apocalypse, complain about potholes and advocate for the rights of sea lions. But still, I consider it an accomplishment. I’ve become an active participant on The Colon Club chat board, which has really educated me about all things colo-rectal cancer. Meeting so many people who suffer from this disease and losing too many of them, has strengthened my voice. My hesitation to talk about rectums and colostomies and bleeding and poop has melted away. Nothing is off limits if it means bringing awareness to this disease and the subtle symptoms that so many of us ignored that ultimately led to our diagnosis.

Through Gaelen and Liz on the chat board, I learned about an organization in Washington D.C. called Fight Colorectal Cancer! Every March they sponsor a 3-day event in D.C. called “Call on Congress”. Never feeling like much of an activist per se, I wasn’t especially drawn to the event itself, but I’d always wanted to visit D.C. to see the museums and monuments. Ironically, “Call on Congress 2012” fell on the week when my husband had to be in D.C. for a Board Meeting. Score! My D.C. vacation was going to be a reality! We decided to make it a mini-family vacation so we scheduled our trip to include our two children, ages 9 and 11. Fight Colo-rectal Cancer was more than happy to include the kids in the activities. All the stars seemed to be aligned – this was going to be a great trip.

As much as I loved visiting D.C., seeing the museums, the monuments and all our capital has to offer, my favorite time in D.C., hands down, was my participation in Call on Congress with my kids right beside me. No one was more surprised by this than me. Our first meeting was with Representative Jaime Herrera-Beutler (WA). Her office was filled with men in business suits and women wearing $200 stilettos carrying brief cases. The kids and me sat there in our “Fight Colorectal Cancer” t-shirts, jeans and comfortable walking shoes. I should note that I did buy a black blazer especially for this meeting to try to dress up a bit.

The last time I’d seen Ms. Herrera-Beutler was waiting in line with her for pancakes at the local fire house several years ago during Hockinson Fun Days. I wondered if she’d remember us. She called us in and despite the line of people behind us, she treated us as though we were the only people on her schedule that day. She motioned us to sit down and I asked her whether she knew much about colo-rectal cancer. “Not much” she said, “Why don’t you talk to me as if I know nothing about it”. And that’s when it happened. That’s when I found my voice. My mouth opened and it just wouldn’t shut. I still stumbled on my words, but not as badly as I did with Vivian. My hesitancy was replaced with passion. The words came rushing out like water gushing forcefully out of Old Faithful. At the celebration dinner that night I told my friend Doug, who had helped me during our training session the previous day “when you’re truly passionate about something, the words come freely”.

At one point during our visit to Capital Hill, the kids and I were waiting at a stoplight to cross the street outside one of the House of Representative buildings. A man, 30-something I would guess, came up to me and asked, “What’s colo-rectal cancer?”

“Seriously?” I asked him, half laughing – I mean really, how could anyone not know about this disease – right?

“No – really” he said, “I don’t know anything about it, can you tell me about it?”

Oh – no. That voice in my head again, but this time it was quick and urgent – “talk and talk fast” it said. I knew I had a very short time to convey a lot of information to this man, so that’s what I did – I talked quickly about everything I knew about this disease before I lost him.

“Um, the light just changed” he said.

“I know – but what I’m telling you is really important and you need to hear it,” I said as I continued on. We talked through at least 3 light changes. The kids and this man must have thought I was crazy. When I’d given him all I thought he could handle, he thanked me and asked if I had any written information I could give him. I went through my materials bag and gave him an extra program I had from Call on Congress. It had most everything he would need to take it from there. I have to confess he looked a bit shell shocked. But the voice in my head silently reassured me and then silenced itself. The kids and I were exhausted from the 7 ½ hours we’d spent on Capital Hill that day, but in addition to feeling exhausted, I felt a peaceful calm surround me.

Finding My Voice – Part 1 of 3

Part 1 of 3 – Becoming an Advocate

It was fall in the Pacific Northwest, my absolute favorite time of year. Fall of 2007 was an especially bright one; lots of sunshine, vibrant fall colors and that cool crispness in the air. I got my kids safely on the school bus and headed down to CVS Pharmacy in Vancouver to run an errand I’d been particularly dreading.

As I drove south on 503 there were a dozen or so places I would have rather stopped at than my ultimate destination; CVS Pharmacy. Sherwoods Nursery would be having end of the season plants on sale, Creative Interiors always has fun design stuff to look at and there were several coffee shops I could stop at to enjoy an Americano and a good book. But the nagging voice inside my head wouldn’t leave me alone “talk to her, you need to tell her” it kept repeating over and over. Schizophrenics hear voices too, but at least their voices have more to say than just repeating the same phrase over and over “talk to her, you need to tell her”.

I found a parking spot near the front entrance to the store, took a deep breath and headed in. The cashier who had helped me the previous week was at her register chatting with a man who appeared to be her manager, judging by his tie and nametag. I waited for a pause in their conversation and politely asked if I could talk to Vivian alone, it was personal. The manager smiled and walked away; Vivian looked confused.

“I don’t know if you remember me” I said, “But I was in here last week and you helped check me out.”

“Okay” said Vivian, clearly not remembering me.

“I had to buy 2 Fleet Enema’s and you knew it was for a colonoscopy and you commented that you were due for yours as well but had been putting it off.” Vivian, still looking a bit confused and wondering what the whole point of this was, gave me a blank look.

“I just wanted to tell you I have cancer. They found a large tumor during my colonoscopy. I have cancer. You need to schedule a colonoscopy”.

By this time Vivian’s confusion was turning to unease. She shifted her feet, shuffled some papers, gave me a sympathetic yet nervous smile and mumbled something about “okay, I’m so sorry”. Thankfully, for Vivian anyway, customers were starting to line up behind me. For a brief moment I wondered if she was going to call store security. I didn’t give her an opportunity. “I just felt that I needed to tell you that” I said and turned to leave the store. I could hear Vivian chatting cordially with the customer behind me, ringing up his items and bagging them. Yeah, that’s right Vivian, no worries, the crazy lady has left the building; you may now return to the land of denial.

I can’t even begin to tell you how awkward and self-conscious I felt about this experience. Why in the hell did I just walk into a CVS Pharmacy to reveal something so personal about myself to someone who I crossed paths with for less than 5 minutes. Why did I feel responsible for reminding this woman that she needed to schedule her screening colonoscopy if she herself wasn’t willing to make it a priority in her life? At that point, I just didn’t care. What I did care about was getting that nagging voice out of my head and a strong cup of coffee in my hand. It seemed this was the only way to achieve that goal and lo and behold, it worked. The voice was silenced.

Almost five years have passed since my encounter with Vivian at CVS Pharmacy. What I didn’t realize at the time was that this was my very first attempt at raising awareness of colo-rectal cancer. It was a feeble attempt and I’ll never know if it was effective or not. What I do know is that I tried. My voice was unsure, hesitant, searching for the words to convey a message that I didn’t understand myself. It was like trying to learn to waltz for the first time for someone who has never danced before. You’re awkward, clumsy, stepping on each other’s feet. The music has a specific beat to which your body isn’t synced with. In short – a total train wreck.

That was the beginning of my journey into colo-rectal cancer as a patient and survivor. I knew from day one I couldn’t do this alone, so I slowly began to assemble a team to surround me and support me. Breaking the news to friends and family was hard. I started by practicing on people I interacted with but hadn’t developed a personal bond with. Teachers and principles came first. After that I realized that most people I knew I had feelings for, so things got difficult from there. I recruited friends to tell other friends. Neighbors told other neighbors. Gradually, most everyone knew of my situation.

Aside from wanting people to know about me, I wanted them to look at themselves as well. I started group e-mails where I talked about the importance of screening colonoscopies at the age of 50; earlier if you had family history and/or symptoms. People listened. Everyone I knew who fell in this category got his or her scopes. Polyps were found on many, but no one had cancer. I literally cried when I received confirmation from both my brother and sister (both under 50) that their scopes each removed one large polyp – benign in both cases. Looks like I was the one who took one for the team.

Meet Mr. July – Tim Maiorca

Welcome Mr. July! We’re excited to introduce you to this brave stage IV survivor and share his story with you. And you’re welcome ladies, we know many of you are aren’t going to mind seeing him all month!

The BASICS about TIM MAIORCA

Name: Tim Maiorca

Diagnosis: Stage IV colon cancer on March 20, 2002

Age at Diagnosis: 37

ON SURVIVING CANCER:

Where were you when you found out you had colon cancer?

I was at work. I went to get a routine physical after experiencing the bleeding and he recommended a colonoscopy. The doctor who did a colonoscopy called me at work to tell me I had cancer.

What were your symptoms?

The only thing I experienced was the bleeding when I went to the bathroom. I didn’t have any aches or pains – that was it.

What did your treatment involve?

Chemotherapy, surgery to remove 18 in. of colon and 2 surface spots on liver. During surgery, they saw the cancer had metastasized.

Any recurrences?

A year and a half later I had a recurrence (2004). It was in liver again. I was sent to liver specialist and they removed ¾ of my liver.

What was the hardest part about treatment?

Wearing the chemo pump. I also experienced hives, nausea, feeling really run down, and cold sensitivity.

What got you through cancer treatment?

My faith. I started going to church again after the original diagnosis.

Does cancer run in your family?

My dad passed away from colon cancer 1 ½ year before I was diagnosed.

WHAT HAS SURVIVING CANCER TAUGHT YOU…

About life?

I was always a workout fanatic, but cancer doesn’t discriminate against anybody… no matter how healthy you think you are.

About family?

It brought my family a lot closer. Both of my sisters are nurses so they helped took care of me. Brought my mother and I closer together.

About your body?

Listen to your body. It’s your body; you should know it. You only get one so you should know everything about it. Don’t be nonchalant – don’t assume it will pass. Be an advocate for your healthcare and treatment.

Has cancer changed your life for the better in any ways?

It’s brought me closer to God and increased my faith. Just being a stage 4 survivor and knowing the odds of how many people get through stage 4; I pretty much only have God to thank for getting me through that.

What do you hope your message and survival story will do for others?

If I can get cancer, anyone can get cancer. It’s very important to get colonoscopies and check-ups even if it doesn’t run in your family. If I had to do it all over again, I would get 100 colonoscopies; A colonoscopy is very minor compared to what you actually go through when you get cancer.

How do you feel about hitting your 10 year mark as a stage IV cancer survivor?

It feels great to hit 10 years. There was a point in my life I wanted to hit 2 years, then 4 years. They always say the goal is 5 years, but for some reason I wasn’t expecting to make it 5 years, after the second one. Now that 10 years is here, it’s blowing me away.

RANDOM INFO ABOUT TIM

Family: mom, sisters and 3 nieces and a nephew

Job? Scheduling manager for a electronics/hydrologic components manufacturer. I also work at a sporting goods store to feed my golf hobby.

Collect anything? African American Art. Love really authentic, hand-done sculptures from all over the world.

Hobbies? I love golf and all sports, I play fast-pitch softball.

Claim to fame? I played college basketball for Thiel College in Pennsylvania.

Why do you look so hot in the picture? I ate lean cuisines for the last 2 months before photo shoot.

Where are you from? Hubbard, OH

Your Teams? I love the Cleveland Browns, Indians and Ohio State

Celebrating Success — Another Milestone Achieved!

by Staci Wills

Well, I did it! I have been irrigating my colostomy for several months, and for the most part my bowels are pretty regular. Like I said a few days ago, I have never had the courage to wear only a stoma cap outside the walls of my house, but yesterday I did it, and I plan to do it again today! Wearing the stoma cap meant that I could wear a regular bathing suit without the “granny panties” I often wear to hide the bulge of the bag.

A bunch of my friends were taking their kids to the YMCA to swim, and I just decided that if I was ever going to wear the stoma cap, I would have to start sometime. A stoma cap is exactly what it sounds like — it’s a small round adhesive cover with a little filter to let the gas out. This is not a bag of any sort, and couldn’t hold more output than what a day-old baby might produce. To my surprise, I wasn’t as worried as I thought I would be. I ate rather responsibly, and I avoided the greasy or sugary foods that I know cause my colon (or what I have left of my colon) to hurt and sometimes “release” when I’m not expecting it.

As I left the house, I took a picture of myself and texted it to my husband. The message with the picture said, “I am one step closer to a bikini.” When we came home, I was so excited that it actually worked that I was bouncing around the kitchen singing – I wore a regular bathing suit! I wore a regular bathing suit!

If this continues to work, and I find myself brave enough to wear a bikini out in public, then this too will be one more way I can share my story and spread awareness. The first person who asks “What is the band aid thing on your stomach?” is in for quite an education!

This is such a HUGE milestone in this journey. I know my body still has a long road to a full recovery, but this was a significant step in my emotional recovery. A simple stoma cap has given me so many more options. If I choose to wear a stoma cap more often, I can pick any bathing suit I want, and I won’t have to worry about hiding the granny panties under the bathing suit. A stoma cap will give my skin time to heal, as sometimes I have little sores, redness, burning, and itching skin under the bag. This is very common for ostomy patients, but thankfully I don’t experience this that often. However, last Thursday the irritation was so bad that I ended up staying home all day with only gauze covering my stoma, as I tried to give my skin a little break from the adhesives that I have to use.

Please don’t think that I mind wearing the bag or that I’m an ostomy “hater.” I’m so grateful for my ostomy. I can’t hate it, because having a colostomy saved my life, but sometimes I get tired of wearing girdle-like granny panties to keep the bag concealed. I get tired of wearing bathing suits that are made for women 20 years older than me. I get tired of the constant skin sensitivity. If wearing a stoma cap makes me feel a little more like my old self, then every minute I spend irrigating is well worth it. I’m worth it.

Irrigation: It’s Not Just For Crops Anymore!

by Staci Wills

This blog won’t always be about ostomies, but since Belle opened the door, here is another spin on life as an ostomate.

At 32, I was diagnosed with Stage III rectal cancer. Because of how low in the rectum my tumor was located, I had no other option but to have a colostomy. Not having any other options, I quickly accepted that this would be my new way of life, but accepting something and embracing it are not the same.

The first year with a colostomy, I often felt like I was dressing someone else’s body. (I was also in full-blown menopause because of radiation, but that’s a subject for another time.) Recovering from surgery took much longer than I was prepared for. I had a difficult time finding clothes that I could feel comfortable in, clothes that could easily hide the “bag,” or clothes that would give a little when the bag would fill.

During the second year, I began to feel a little better. With the help of physical therapy, I was getting stronger, and the more I exercised the more energy I had. As my abdomen healed, finding clothes seemed to be less challenging. It was during this time that I began to contemplate the possibility of irrigation. During a conversation with my surgeon early on in my journey, his nurse had mentioned the process, telling me that irrigation is only effective for patients with a colostomy, so it was an option for me. Simply put, water is used to flush out the colon through the stoma. If this is done routinely (every day to start, although some ostomates find they can go 2 full days between irrigating once they’ve been doing it for awhile), the body is “trained” to only empty during that time. If the patient is dedicated to this process, he/she can possibly get away with only wearing a stoma cap or a bandage to cover the stoma, and wearing a “bag” is no longer necessary. This process takes dedication, and I wasn’t sure if I would ever be brave enough to try this, but I ordered an irrigation kit just in case.

One day while looking through a fellow Colondar model and ostomate’s Facebook photos (Becca Babcock, Miss August, 2008), I saw that she was wearing a bandage on her abdomen, AND she was wearing a bikini at the beach. While she had a different type of colostomy, I thought a bikini was something from my past and never to be seen again. I was instantly inspired to try that foreign process of irrigation. It’s not that I hated wearing a “bag,” but as much as I tried to conceal the appliance, it still had a huge influence on my clothing options. I called my husband to tell him that I was going bikini shopping, and I called my ostomy nurse to schedule an appointment to learn more about this process. That night I made the decision to commit a portion of my time every evening to irrigating.
That was seven months ago, and since then the only time my body has “emptied” without irrigating was if I was sick or ate something that didn’t agree with my colon.

Irrigation has been a liberating experience. I no longer worry about carrying supplies with me. I’m not brave enough to go without a “bag” very often, but that time is coming. I no longer worry about clothing choices, and I can’t remember the last time I asked my husband if he could see the appliance through my shirt. As with most colorectal cancer patients and survivors, the term “poop pain” is common jargon. For a few colostomy patients, “poop pain” means things are moving too slowly through the colon. With irrigation, most times I can quickly relieve these pains with a flush of the colon. I also tend to feel less bloated and less gassy. I no longer even think about the possibility of pooping in public. I feel so much more like my old self without these concerns. I no longer feel like I’m dressing someone else. Now into year three, I have embraced my colostomy.

The Colostomy Conundrum – Part 3

by Belle Piazza

Read Part 1

Read Part 2

February 14, 2011 was by far, one of the best days of my entire life. Not because it was Valentines Day but because that was the day I received a phone call from Erika Kratzer from The Colon Club, informing me that I had been selected as one of the 2012 Colondar Models. I was beside myself with joy. I couldn’t believe my luck. If I had a bucket list, this would have been the number one item on it – a real dream come true for me. A trip cross country to spend a weekend at a photo shoot in Upstate New York would be a challenge for me but since I knew I’d be surrounded by a houseful of people with similar bathroom issues, I knew I could do it. I had to do it – nothing – not cancer – not bathroom issues – nothing was going to stop me from being a part of this amazing project. This group, I knew, would understand.

At the photo shoot I met many, many wonderful, kind and inspirational people. Each had a story. I instantly loved everyone I met and found that I really didn’t want to hear about their cancer stories, it hurt too much. I wanted these people to all be healthy and happy and cancer free. And for that weekend, we were. Two of the other models, Staci and Melissa, had permanent colostomies. They didn’t have a choice – the choice was made for them – if you want to live, you have to have a permanent colostomy. Neither one so much as blinked an eye – “do it” they said. Not only did I blink an eye or two I literally came unhinged and balled like a baby when I was first told I’d have to have an ostomy. Wow, I thought, what strength these women had. But more than just inner strength, they had a peace and a life force about them that I was lacking. Melissa was a college student with a passion for horses. Staci was a young mother of 3, active in her church, family and community. Both were doing one thing I wasn’t able to do – that one thing being anything they wanted to whenever they wanted to do it. The wheels in my mind started to turn.

When I returned from the photo shoot I met with a friend of mine whose background is in Psychology. I try hard to not use her as my own personal shrink and I think I do a pretty good job of it, but suffice it to say that when I have a problem, she is a very effective friend to have around! We talked about the Colondar weekend and how crazy it sounded that I hooked up with this group of total strangers on line, that they flew me into a small airport, where I was picked up in a limo by total strangers to be taken 2 ½ hours away to a remote part of Upstate New York where I’d stay in a house owned by people I didn’t know and spent the entire weekend with a large group of people I’d never met. I laughed as I told my friend Maria about all of this and then said “this is SO me – I’ve ALWAYS done this type of crazy stuff”. I used to have an old Nike ad that I’d pulled from a fitness magazine that said “Just Do It” taped to my refrigerator door. This was my mantra. And that’s when it hit me. That’s when the light bulb lit up over my head. That’s when it all became so perfectly and painfully clear. I had lived my entire life doing whatever passion struck me. It didn’t matter if it was what other people did and it didn’t matter what other people thought. I had done many things in my life – and had mastered few. But I always had fun and I was always up for a new experience or challenge. I never let anything or anyone slow me down or discourage me from doing what I wanted to do. Until now.

I suddenly realized that my bathroom issues were drastically compromising my quality of life and limiting my life experiences. I realized that for whatever reason, my bathroom issues were not going to improve. I’d tried everything I could possibly think of, including allowance for time, and this was as good as things were going to get. And things were NOT good. It was time to take this to the next level. It was time to call my surgeon and ask for a permanent colostomy.

There were many things that caused me to delay this decision for so long. One of the first deterrents was my hesitation to subject myself to another ‘big’ surgery. I had asked my surgeon previously about the possibility of a permanent colostomy and she said it would involve another cut me down the middle, ‘big’ surgery. The thought of that was so overwhelming, I pushed the thought to a back corner of my mind. There was the feeling that other people could make this work so theoretically, I should be able to make my new plumbing work too. If not, then I had failed. I was a failure. There were the days when things weren’t too terribly bad; though days like that were few and far between. On good days, or semi-good days, I enjoyed not having to deal with the bag and all it involved. And although I knew I could be happy with a colostomy as I’d lived with an ileostomy for a full year, the mental and emotional adjustment to find that happy place again was one I didn’t want to have to go through again. If I could have waved my magic wand and awoken one morning with a colostomy, without the painful recovery of surgery and without the mental/emotional adjustment phase, I would have done it in a heart beat. I just didn’t want to do the work to get there.

And so it was set. August 2011 – almost 2 months after The Colondar photo shoot, my surgery date for a permament colostomy was set. The weeks leading up to the reversal were brutal. I had started keeping a log of how frequently I was using the bathroom and realized a bad day was in excess of 20 times a day. A good day was 10 or less trips. This was complete insanity and to see it right there in front of me in black and white was the reality check I needed to illustrate as much. I knew I had to do this.

Waking up in the recovery room in my post surgery haze, the first thought that entered my mind was “Yes! It’s over, no more pain, no more pain” I was so happy. Instead of an open me up down the middle surgery, my surgeon was able to do the entire procedure laproscopically. This meant a huge difference in recovery time. Within 2 weeks I was able to perform most of my daily functions, being careful not to lift too much. The adjustment phase I anticipated was non-existent. I tell people now that once you have cared for and lived with an ostomy, it’s like riding a bike, it’s something you just don’t forget – you pick right up where you left off.

I met with Natalie a few times to ensure that I had the right products with the right size openings to fit my ostomy as the ostomy healed and shrank down to a smaller size. It was like meeting with an old friend. I told Natalie about The Colondar and she was thrilled for me.

In summary, and in short, I have my life back. It’s been tweaked and modified and at times stomped on when I was down, but I have my life back. And now, with my permanent colostomy, life is more on my terms than on the terms of my colon. This was not an easy or a quick decision. It was the right decision for me at the right time. It did not come quickly or easily. As colo-rectal cancer survivors there is simply no one size fits all answer to our bathroom problems. For some, an ostomy is the answer – whether we make that choice or a surgeon makes it for us. For some, reversal surgeries can be managed adequately to enable a person to live in harmony with their new plumbing. For others, despite failing reversal surgeries, an ostomy will never be an option. There is no right, no wrong, no judgment. As survivors we are forced to make many difficult life changing decisions. As much as we want it to all go away, our battle scars are with us forever. Sometimes silent, sometimes coming at us with both guns ablazing. All we can do is gather together, compare our war stories, what works for us, what doesn’t; to share information and support. Through it all I have found the greatest source of information on ostomies, reversals and managing our new plumbing right here at The Colon Club. From the people who have been through it and who live with it every day of their lives. To those here who have supported me through it all, the good, the bad, the ugly and the down right deep, dark, really ugly times, I thank you. And now, I’m off to do…..whatever I happen to feel like today…..because I can!

The Colostomy Conundrum | Part 2

By Belle Piazza

Read Part 1 of the Colostomy Conundrum

I’ve never been one to back away from a challenge. I may not be jumping out of an airplane with a flimsy fabric parachute on my back, but suffice it to say, I’m not a wimp. To reverse or not to reverse – that was the question. I compared the pros and cons of having an ostomy vs. not having one. But in all honesty, for anyone facing this decision, it’s more about how much of a gambler you are than anything else. The honest truth is that some have complete success with this procedure, some have complete failure and most fall somewhere in between. If there’s one hard and fast rule I’ve learned about ostomy reversal surgeries and their success or failure – it’s that there are NO RULES. Anything goes. So in the infamous words of Clint Eastwood, “You’ve got to ask yourself one question: ‘Do I feel lucky?’ “

I finally decided to roll the dice and go for the reversal surgery. My main reasoning was that I never wanted to wonder “what if?”. Like those with stage 2 colorectal cancer, where adjuvant chemotherapy is questionable as to benefit – you never want to look back and regret not having tried. Whatever choice you make, make it with conviction; go forward and never look back. And so I did. I chose November for my surgery month. In the Pacific Northwest where I live, nothing much happens in November, except for Thanksgiving of course. It’s wet, cold, dreary. If I had to be stuck in bed or close to a bathroom, this was as good a time as any.

In pre-op several of the nurses commented on how happy I must be about “getting rid of the bag”. No, not really, I thought; and how odd that they should have such perceptions. But I’d learned from Natalie, my WOC Nurse, that it was pretty common for even nurses to have misunderstandings and misgivings about ostomies. It was one of the reasons Natalie was drawn to the field. She saw a need for patients with ostomies and it was her calling to fill that need. She loved her job and it showed.

The surgery was uneventful; always a good thing when it comes to surgeries. I awoke with no bag – just a quarter sized hole in my lower right abdomen that looked like someone had punched a big clean circular hole in it with a shop tool. The hole was packed with wet gauze and taped over. My hospital stay was almost a week, simply because my surgeon knew how much trouble I’d had with my first surgery and she wasn’t taking any chances this time around. Slowly, ever so slowly, my intestines began to awake and things started to move.

At home, things really started moving. Most people will tell you that the first two weeks of a reversal surgery are pure hell. They would be correct in this assessment. You may as well roll up a mat next to the toilet, stock up on adult diapers and brace yourself for the worst. Most people will also tell you that after the first couple of weeks, things get better. Even in the worst of circumstances, the first two weeks are the worst and then there is some improvement, even if it’s just a slight improvement. And that was pretty much my experience as well. My next major improvement was at about the 3 month mark. And at some point, things seemed to be working out a bit. I can do this I thought, I can live with this reversal. Hey, I think I made the right decision.

To say things were back to normal would be a flat out lie. Things would never be “normal” again; rather I was finding what we refer to as our “new normal”. Not great, but it was kind of nice to not have a bag. My frequency was still around 10 times a day, but it was manageable. I was learning about what foods I could and couldn’t eat. I avoided popcorn and nuts because they seemed harsh coming out. I avoided vinegar and spicy foods as if it burned going in, it burned twice as much going out. Though many people had issues with soluble riber – roughage, this didn’t seem to bother me too much. I had tremendous support on The Colon Club chat board where others going through reversals could share their experiences, succeses and failures with me.

All seemed to be going fairly well until I went in for a hernia repair surgery and then, as they say, everything went to hell in a handbasket.

All the progress I made slipped away. I was back to lots of frequency, urgency and burning. WTH? I thought! What just happened? My surgeon could offer no explanation. It’s just one of those things. Evidently my bowels just don’t like to be messed with. Great…..tell me that now? I never regained ground after the hernia repair surgery and several months later was faced with yet another hernia surgery. At that point I felt I had nothing to lose, except the hernia, so I went through with the second hernia repair.

By now I was six months out from my ileo reversal and was hoping that things would have settled down some, but they hadn’t. I was buying Costco sized quantities of Charmin toilet paper, Calmoseptine cream and A&D Ointment. I always had a supply of adult sized diapers on hand, just in case. Neither my surgeon nor my oncologist were any help. Doctors, in general, simply don’t know what to do with those of us who have bathroom issues other than to tell us to take Metamucil. I learned there just aren’t that many of us out there with these unique problems and because each persons body responds so differently to any sort of stimuli, there’s simply no ‘one size fits all’ solution. It was time to seek out help outside the box so I made an appointment with a well respected and experienced Naturopath.

The Naturopath did a blood test on me that determined I was intolerant to dairy (not allergic – just intolerant). The effects of dairy on my system were much more subtle, yet there, nonetheless. I was desperate. As much as it pained me, I gave up my beloved cheese. Giving up dairy helped, but it wasn’t a silver bullet. My search continued. I discovered the MD Anderson Bowel Management Program (http://www2.mdanderson.org/app/pe/index.cfm?pageName=opendoc&docid=34) and implemented many of its recommendations to slow down the bowels, which helped. I experimented with Imodium and Lomotil to no avail. Through conversations on The Colon Club chat group, I learned about soluble fiber vs. insoluble fiber and how each plays a role in how quickly or slowly foods move through your system. Unfortunately my colon never learned this lesson and managing my fiber through diet did nothing. In short, I did everything I could think of to try to make my new plumbing work.

Over time, years in fact, I adjusted to my “new normal”. It wasn’t great or even close. It was barely tolerable. Get togethers with friends were always at my house and I rarely attend activities outside my home unless there was a bathroom close by. Camping with friends and family was out of the question. Airline travel was okay since there was always a bathroom nearby, but the destination also needed to include close proximity to a bathroom at all times. My kids knew I’d never volunteer in their classrooms or attend school field trips. Going out to eat was rare and always “depends on how I’m doing” as I would tell my husband. It was crazy, but this had become the “new normal” not just for me, but for my entire family.

I always thought there was hope. I always thought there would be one more thing to try. Just give it a little more time I’d tell myself. Don’t give up, your body just needs to adjust to all its been through. Weeks turned into months and months turned into years. At 2 ½ years post take down surgery, my lifestyle was still extremely restricted. Whatever I was doing, I had to be within 10 minutes of a bathroom, period. I began to wonder, is this really the way I want to live my life? Is this really what I signed up for? Dare I think the unthinkable? Is it time for me to consider……a permanent colostomy?

The Colostomy Conundrum | Part 1 of 3

by Belle Piazza

I honestly can’t say that it came as a complete surprise to me as I lay there in my hospital bed in my post colonoscopy haze to hear the word “cancer”. I had to hear it several times as the anesthesia made me pretty loopy; but each time the word was spoken I just sort of took it in. Not thrilled of course, but not shocked. My father died of colon cancer at the age of 67. My mother, in her late 50’s, was left alone to raise three teenage children as a widower. Now, here I was, diagnosed with rectal cancer at the age of 43.

After all, my symptoms had to have meant something. How many people have to poop within 30 minutes of eating or drinking anything? How many people poop 10 times a day on average? How many people fart blood? That couldn’t be normal right? But cancer? Well, not a complete surprise. But I’d heard colon cancer, when caught early, had a high cure rate. Surely that was the case with me. I took the news well; very well really. If cancer was going to kill me, I’d be more surprised than anyone.

I went through a slew of tests and met with my surgeon to come up with our game plan. Surgery, sure, expected. But beyond that…….well, it was caught early right? Chemo? Radiation? Surely not! What I wasn’t prepared for, in any way shape or form, was the “C” word. And I’m not talking “cancer” or “chemo”; I’m talking the BIG “C” word – “colostomy”.

“A WHAT???” I shrieked in horror; I wilted, crumpled, my knees felt weak. I thought I was going to throw up. “NO – THERE HAS TO BE ANOTHER WAY? WHY DO YOU HAVE TO TAKE MY ENTIRE RECTUM??? Oh my God, I’m going to be a FREAK!!!” It really didn’t matter what my surgeon said after that, though she chose, wisely I might add, to take a tough love approach. You do it because there’s no choice – it’s a colostomy or cancer – choose your “C” word, but without one, you will have the other.

I was beside myself with anguish and grief. My father had a colostomy. It was a dark, mysterious, disgusting thing he and my mother dealt with in a back bathroom. “Kathy – I need your help in here” I’d hear him yell. What “help” my mother provided him with I don’t know, as we never discussed his colostomy. I knew it made the bathroom stinky so none of us kids ever went in there. When my father passed, all thought of his colostomy passed with him and it was never spoken of again.

My surgeon set me up with a WOCN (Wound, Ostomy Care Nurse) in Portland named Natalie. Natalie was younger than me. Her demeanor was calm and soothing and she let me cry and cry on her shoulder and she held me. She assured me I could do this and that she would be there to help me. My husband and close friends surrounded me with support. No one cared which orifice my poop came out of, they just wanted me to be alive. My children, who had just turned 5 and 7 at the time, didn’t know much about it at all. I vowed that they would not grow up with the fear or intimidation I had surrounding ostomies.

I knew I’d never be ready for an ostomy, but in life, when are we ever ‘ready’ for what comes our way? Ready or not, I was going to have a temporary ileostomy so I decided I better do my best to figure out how we were going to coexist together. Going into surgery, my husband squeezed my hand, gave me one last kiss good-bye and off I went.

It took me three days after I first awoke from my surgery to remove the cancerous tumor and give me a temporary ileostomy before I was brave enough to peek under the bedcovers to see exactly what my abdomen looked like. It wasn’t pretty. Staples from just above my belly button down to my bikini line. Two JP drains coming out of my lower left abdomen. And to the right……an ileostomy bag stuck to my abdomen that looked like a rectangular Ziploc baggy hanging there. The nurses would check on me and drain the fluid from the bag throughout the day and night. They would measure the output and make note of it in their records. All done in the most professional manner imaginable while I turned to look the other way, embarrassed at my presentation.

After almost 2 ½ weeks in the hospital I was sent home with some brief directions on how to care and manage the ostomy. The first thing I did when I got home was to call Natalie and set up an appointment with her. At first we met every few days so that Natalie could help me with bag changes. Bi-weekly visits turned to weekly visits and then monthly. Eventually, Natalie was ready to let me go – “Call me if you have a problem. You’ll be fine.” I was on my own.

When life gives you lemons you can make lemonade. If you haven’t made real home made lemonade before, you will be surprised at just how much sugar you need to add to those lemons before the taste is pleasing to the palate. You also have to figure out the lemon juice to water ratio, how much the ice will dilute the flavor and remember to strain the juice so as to eliminate the excess pulp and seeds. In other words, it sounds simple, but it does take some trial and error before you’re ready to set up a lemonade stand. BUT – it’s lemonade; it’s not rocket science. And so was life with my ileostomy. Once you perfect your technique, be it for lemonade or the care of your ostomy, you can sit back and reap the benefits.

That’s right, benefits of an ostomy. You may have wanted grape juice or even wine, but you drew the short stick and didn’t get pinot noir or even concord grapes; you got lemons. And good lemonade is nothing to turn your nose up at.

It took me several months to adjust to life with my ileostomy. Gone were the 10 trips a day to the bathroom. I basically emptied my bag whenever I had to urinate. It took a few extra minutes, but it wasn’t terrible. I learned to change my appliance myself and could get cleaned up, changed and dispose of the old bag in less than five minutes. I learned that how I viewed my ostomy was how others would view it. If I chose to feel sorry for myself, pity would follow. If I chose to act like it was no big deal, people basically forgot all about it. I chose to accept my circumstances and make the best of my situation.

My surgeon refused to reverse my ileostomy until I was done with treatment – which consisted of 30 rounds of radiation and 12 rounds of chemo. It took almost a full year. When my year was up, I had a CT done to make sure there was no evidence of disease and a date was set for my reversal surgery.

I was a model patient. Treatment, for the most part had gone as planned. There were delays here and there due to low white blood counts and/or generally feeling like total crap; but overall, I did okay. The radiation was especially brutal and I was grateful that I had the ostomy versus having to run multiple times to the bathroom due to the diarrhea both the chemo and radiation caused.

The only real surprise was how I felt mentally when I met with my surgeon to schedule a date for my reversal surgery. You see the thing is, my ileostomy no longer made me feel like a freak. It had become a part of me and I was quite comfortable with it. My life was so manageable and predictable with the ileostomy. I’d heard both horror stories and success stories about reversal surgeries and now I was faced with the uncertainty of my own pending reversal. Suddenly I questioned whether I wanted to reverse the ileostomy…..or keep it forever.

Meet Ms. June – Kim Hall Jackson

Kim Hall Jackson – what a gem. She’s our Ms. June and boy does she have a great story. Read on to learn not only about how she survived rectal cancer but how she continues to make a difference and continually give back – constantly grateful for every blessing in her life.

The BASICS about KIM HALL JACKSON

Name: Kim Hall Jackson

Diagnosis date: Stage III rectal cancer in December 2008 (originally diagnosed with Stage I, re-diagnosed after surgery.)

Age at Diagnosis: 45

ON SURVIVING CANCER:

Where were you when you found out you had colon cancer? I was at the doctor’s office. I left the room and was shocked. It was like an out-of-body experience.

What were your symptoms? My main symptom was blood discharge. My doctor is an advocate of African Americans getting a colonoscopy earlier than age 50. I had been totally healthy before I ever saw the blood discharge. As a self-proclaimed “poop checker,” I’d never seen anything out of the ordinary until the blood.

What did your treatment involve? When I was first diagnosed in December 2008, they said my cancer was Stage I. Because we thought we caught it early, I was told I had time and that we could do surgery after the holidays – there was no rush. So, I followed that recommendation and had a bowel resection and temporary ileostomy. Two weeks after surgery I went to get my staples removed and was informed my cancer had been re-staged to Stage III rectal cancer. I began looking for an oncology and radiation team. I then started treatment after my ileostomy reversal.

What was the hardest part about treatment? The chemo infusion pump with radiation.

What got you through cancer treatment? Family, prayer, and friends. All of my friends did little things for me – made food, took me shopping when clothes were too small/large. My husband was awesome.

WHAT HAS SURVIVING RECTAL CANCER TAUGHT YOU…

About life? Everything is not as important as it used to be. The important things are even more important.

About family? My family is strong, supportive and brave.

About your body? Listen to your body. It’s your body; you should know it. You only get one so you should know everything about it. Don’t be nonchalant – don’t assume it will pass. Be an advocate for your healthcare and treatment.

Do you do anything now that you didn’t before, thanks to cancer? I tell people to get screened and to not think it can’t happen to you because you’re an African American, under age 50 or even because you work out or took dance. Before I was diagnosed, I didn’t think cancer ran in my circle. While there may not be a direct family history (there may be some cancer here and there) it had to start somewhere. Don’t assume it’s not going to start with you.

What’s your message to the African American community? Our risk is higher and we are normally diagnosed at a later stage. We have a higher death occurrence rate because we’re normally diagnosed.

Has cancer changed your life for the better in any ways? I don’t save my favorite things like shoes, outfits, and china – I may have been saving once but I use it now. I tell people that I love them more. Since being diagnosed, I’ve joined cancer support groups, done colon cancer walks and jumped on any opportunity to do an event and talk to people. I’ve also become part of the Buddy System to help others through it.

What do you hope your message and survival story will do for others? I hope they look at me and think, “Is that a black girl? Wow that can happen! She looks like an everyday person; it can happen to me. I’m going to get screened.”

RANDOM INFO ABOUT KIM

Family: husband Jeffrey and six kiddos (Aja, Jenae, Khamaree, Keyanna, Erick, Niara)

Job? Convention services liaison

Collect anything? African American Art. Love really authentic, hand-done sculptures from all over the world.

Hobbies? African dance, shopping, movies. My husband is an African drummer and I’m an African dancer. We met on a blind date.

Know anyone famous? I used to be a publicist for Morgan Freeman. (among a few other artists.)

Where are you from? Philadelphia, PA

Like hotdogs? Nope – I’m a vegetarian. I love tofu.

Preferred toilet paper brand? Scott

Meet Ms. May – Connie Belden

We can’t think of a better way to celebrate May Day than to introduce you to Connie Belden. She’s one of the quickest-witted people we know and brings a smile to everyone she meets. And a joke. Learn a little bit more about Ms. May 2012, Connie Belden!

The BASICS about CONNIE BELDEN

Name: Connie Belden

Diagnosis date: Stage I colon cancer on October 6, 2006

Age: 32

ON SURVIVING CANCER:

Where were you when you found out you had colon cancer? I was at work. They called me at 5pm in the afternoon, right when I was leaving. Then I had to drive home; I was not a happy camper.

How did you feel when you were diagnosed with colon cancer? I was convinced it was a mistake.

What were your symptoms? I’d dealt with colitis for two or three years and was hospitalized for it in 2006. I had cramping and sweating. I was in the hospital for a few days with that. When discharged, they suggested I get a colonoscopy. I’m glad I listened to them. Although I work in a hospital each day, it didn’t really influence me to get screened. I assumed I was too young for colon cancer, and that my symptoms and discomfort were just from colitis.

What did your treatment involve? Sigmoid resection that removed the tumor that they found.

What was the hardest part about treatment? The surgery itself.

What got you through cancer treatment? My family. My kids were in elementary school so I took things one day at a time. Husband is a cancer survivor of melanoma so he was helpful.

Does cancer run in your family? Believe it or not gall bladder does, but no history of colon.

WHAT HAS SURVIVING COLON CANCER TAUGHT YOU…

About life? Don’t sweat the little stuff

About family? They’re the most important.

About your body? I need to listen to it.

Do you do anything now that you didn’t before, thanks to cancer? Our diet is much more healthy; we’re much more conscious of what we feed the kids and ourselves.

Has cancer changed your life for the better in any ways? I am a nagging advocate in my place of employment and my family about colon cancer and screening. People roll their eyes when I start talking about it now.

What do you hope your message and survival story will do for others? Early detection. I hope people realize that just because you have the diagnoses doesn’t make it a death sentence. You still have a 93% cure rate when it’s stage 1. You have to listen to your body when it’s trying to tell you something.

RANDOM INFO ABOUT CONNIE

Family: husband Scott and 2 kiddos (Parker and Cameron)

Job? Radiologic Technologist

First job? McDonalds

Hobbies? I love to read fiction, trashy romance novels and the “classics.” I’m reading through list of “books you should read before you die.” Outside of that I cart my kids around everywhere.

Pets? 2 rescue dogs – a black lab and boxer mutt

Where are you from? I grew up in Clark Summit, PA and live in Collegeville, PA

Crazy Irrational Fear? Boats

Craziness? To get nurses attention during surgery, I would start to tell dirty jokes over the intercom.

Meet Mr. April – Dan Wilson

We know it’s April Fools Day and all but our newest Colondar model to be featured throughout April is no joke. Dan’s a marathoner who’s run a race in all 50 states. His story is inspiring, encouraging and eye-opening. Read on to learn a little bit more about Mr. April 2012, Dan Wilson!

The BASICS about DAN WILSON

Name: Dan Wilson

Diagnosis date: Stage III colon cancer in December 2005

Age: 47

ON SURVIVING CANCER:

Where were you when you found out you had colon cancer? At first, I thought I had hemorrhoids. My brother-in-law is a doctor and my sister is a nurse. The worse my symptoms got, the more worried I became. They advised me to get it checked up. I had a great doc who sent me in for a colonoscopy. I woke up from the procedure seeing a picture of my cancer.

How did you feel when you were diagnosed with colon cancer? It couldn’t happen to me.

What were your symptoms? Bleeding, fatigue, nauseated

What did your treatment involve? I had surgery for a resection and then six months of chemo.

What was the hardest part about treatment? Having neuropathy and not being able to do the things I normally did.

What got you through cancer treatment? Being a marathoner, I was always anxious to get back in shape. I ran a 6-hour marathon while I was on chemo and I had a treatment the next day. I took the medal into the oncologist and showed her I ran a marathon. I just had to do it.

Does cancer run in your family? My aunt had colon cancer and another aunt had another type of cancer. My sister had throat cancer. I had genetic testing, but nothing came of that.

WHAT HAS SURVIVING COLON CANCER TAUGHT YOU…

About life? Don’t take things for granted. A lot of people take stuff for granted… they worry that this and that’s going to happen. We could be here today and gone tomorrow. I definitely appreciate life more.

About family? The ones who helped get me through were most of my family. They showed so much love and support.

About your body? I’ve always heard rumors about studies on athletes saying your immune system can get run down and doesn’t have chance to fight diseases. A lot of ultra runners are getting cancer. I wonder if it’s because their immune systems are down, and that has anything to do with it. I still try to eat healthy and stay fit.

Do you do anything now that you didn’t before, thanks to cancer? I got married.

Has cancer changed your life for the better in any ways? I respect people a lot more. Before cancer I was always stressed out. I don’t let things bother me anymore. I’m a little bit more laid back because life is so precious now. It took awhile to get back in shape but incredibly, in 2007 I ran all of my fastest times ever for 50miles, marathons, 50ks, 100-mile races and more.

What do you hope your message and survival story will do for others? I hope it keeps people positive and encourages them to have a positive attitude. That’s what you need to keep going.

RANDOM INFO ABOUT DAN

Family: wife – Beiyi. Because they met through fitness and both loved running, they ran 7 miles to the top of a Denver mountain at their wedding, changed clothes and got married on a mountaintop, and then ran back down in their wedding attire.

Job? Commercial construction

Collect anything? Medals from marathons and ultras

Hobbies? It took me 6 years to run the 50 states in 2004; I finished in Honolulu, HI and jumped in the ocean afterwards.

Where are you from? Denver, CO

Craziness? THREE WEEKS after I was finished with all of my treatments I ran Pike’s Peak marathon. (It was my slowest time ever by 2 hours) But, I finished it, was my 11^th. I don’t think people enjoyed being passed by someone who had just finished chemo.

Meet Mr. March 2012 | Roger Rojas

Happy Colon Cancer Awareness Month! To celebrate, meet one amazing survivor, Mr. March, Roger Rojas!

Roger is an avid runner, Steelers fan (although he’s from Texas) and one of the nicest guys you’ll ever meet. Read on to learn a little bit more about him.

The BASICS about ROGER ROJAS

Name: Roger Rojas

Diagnosis date: October 7, 2008 at age 32 with Stage III rectal cancer.

ON SURVIVING CANCER:

Where were you when you found out you had colon cancer? At the doctor’s office.

How did you feel when you were diagnosed with colon cancer? I was in shock, it completely blew me away.

What were your symptoms? A little bit of constipation, and that was it.

What did your treatment involve? I had chemo 7 days/week and radiation 5 days/week. Then I had surgery, and after that 6 more months of chemo.

What was the hardest part about treatment? Not having the energy to play with my children. My kids were young and wanting to do things and I had to force myself to do little things with them.

Any recurrances? A few scares, but no recurrance.

What got you through cancer treatment? I wanted to show people that cancer doesn’t mean you’re going to die. I wanted to show people that you can live after cancer.

WHAT HAS SURVIVING COLON CANCER TAUGHT YOU…

About your body? I’m not indestructible. For awhile I thought I was on top of the world and nothing could throw me off but cancer got me.

About life? Don’t sweat the small stuff.

About family? They’re the most important thing to me.

Do you do anything now that you didn’t before, thanks to cancer? I started running. It’s made me look at things in different ways. I have to stop and realize that I’m just happy to be here. I don’t take things for granted anymore.

Does cancer run in your family? There is a family history of cancer – grandmother had bone and aunt had colon. My dad had a benign colon tumor size of orange.

What do you hope your message and survival story will do for others? I hope it keeps people positive and a positive attitude. That’s what you need to keep going.

RANDOM INFO ABOUT ROGER

Family: Carmen – wife and 3 kids – Frankie, Adrian and Cristi

Job? Industrial Engineer

Collect anything? Tennis shoes and hats

Hobbies? Running, Pittsburgh Steelers, hanging with my family and the weather channel.

Where are you from? Kingsville, TX.

Preferred toilet paper brand? Scott

Announcing the 2013 Models!

We’ve got another AMAZING group of models that will be showing off their scars and sharing their stories with everyone in the 2013 Colondar!

Please join us in celebrating our next round of Colondar models!

Gals in the 2013 Colondar

Dawn Gagliardi- Smyrna, GA

Dana Holbrook- Point Pleasant, NJ

Carolyn Hunt- Calabasas, CA

Tia Jones- Wichita, KS

Kelly Kuster- Milwaukee, WI

Kerryn Miller- Seattle, WA

Meaghan Volk- Peoria, AZ

Guys in the 2013 Colondar:

Sanjay Bery- Basking Ridge, NJ

Doug Dallmann- Portland, OR

Eric Hyatt- Gibson City, IL

Brian Novak- Boulder, CO

Brian Threlkeld- North Varmouth, ME

We cannot wait to share their amazing stories with you all!

Meet Miss February 2012 – Belle Piazza

February is the month of love, and oh how fitting that as we introduce Miss February 2012.

Belle Piazza is a charming mom of two and avid gardener from Battle Ground, WA. She’s fun, spirited and a fighter. Read on to learn a little bit more about Belle.

The BASICS about BELLE PIAZZA

Name: Belle Piazza
Diagnosis date: October 23, 2007 (a day before her son’s 5th birthday) with stage IIIc rectal cancer at age 43
Currently undergoing chemotherapy.

ON SURVIVING CANCER:

How did you feel when you were diagnosed with colon cancer? It didn’t really sink in until after the surgery when they told me how many lymph nodes were involved. I was initially diagnosed with stage II and went straight to surgery, not planning on chemo and radiation. During surgery, they removed 38 lymph nodes and 27 had cancer. When the pathology report came back we learned that initial reports weren’t accurate; a lot of lymph nodes were involved.

What were your symptoms? I experienced increased frequency of bathroom use, urgency, bright red blood on toilet paper and I was passing blood when I passed gas. Anytime I ate, I had to run to the bathroom. Anything in my stomach made me go to the restroom. But, I didn’t have any pain.

What did your treatment involve? Surgery, a temporary ileostomy for a year, 10 rounds of chemo, 2 rounds of Zelota, chemo/radiation combo with 30 radiation treatments for 6 weeks, an ileostomy reversal, hernia repairs, and VATS (video-assisted thoracic surgery). I’m currently on chemo.

Worst thing about treatment? In radiation I experienced constant pain; I couldn’t lie flat and had to sit in a chair because it hurt to straighten out. It burned my skin.

What got you through cancer treatment? My friends and my amazing support group. Also, The Colon Club. When I get bad news, The Colon Club is the first place I go because the people there “get it.” I’ve had tremendous support from friends – friends who help me in the garden, watch my kids, go with me to chemo, cook for me and more. They’ve provided so much support in every way.

WHAT HAS SURVIVING COLON CANCER TAUGHT YOU…

About your body? It’s just a body, it’s not who you are.

About life? Humility.

Do you do anything now that you didn’t before, thanks to cancer? Not really because I’ve always done whatever I wanted to do; it hasn’t made me a better person. I have no regrets.

Does cancer run in your family? My father died of colon cancer at 67.

RANDOM INFO ABOUT BELLE

Family: Stephen – husband. I also have 2 kids – Amber and Michael

Job? Stay at home mom!

First job? Cloth World

Hobbies: Gardening, home canning and cooking from my garden produce, wine tasting, bird watching

Favorite vegetable to grow? Corn

Where are you from? Originally from Phoenix, AZ and later moved to Washington State

Preferred toilet paper brand? Charmin Ultra Soft

Meet Mr. January 2012 – David Dubin

Today we get to break open the seal and hang up our 2012 Colondars! And this brave cowboy is the first to grace the pages as Mr. January 2012.

David Dubin is a three-time cancer survivor from Haworth, NJ. You might have already read his Colondar bio to learn about his story of cancer survival, but here are some other fun facts that you may not have known about our Mr. January 2012. We sat down with him at the photo shoot and got the full scoop…

The BASICS about DAVID DUBIN

Name: David Dubin
Diagnosis date: December 1996 with stage II colon cancer at age 29
Months/Years in remission: Diagnosed 3 times now, last time was kidney 2 years ago

ON SURVIVING CANCER:

How did you feel when you were diagnosed with colon cancer? Surprised but not shocked. It ran in my family; my dad and grandfather had it.

What were your symptoms? Bleeding, felt like trying to pass a golf ball.

What did your treatment involve? Surgery, since it had spread to some lymph nodes and 6 months of chemo.

Any recurrences? Had colon recurrence in May 2007; spot on kidney February 2009.

Worst thing about treatment? At 29, the loss of invulnerability that you’re supposed to feel in your 20s.

What got you through cancer treatment? The mindset that it beat the alternative. Also, mango sorbet.

WHAT HAS SURVIVING COLON CANCER TAUGHT YOU…

About your body? It’s awfully complicated. Your body has a way of really keeping you aware of yourself. It tells you when something’s wrong but also has a way of fixing itself even if only temporary.

About life? Awfully temporary. We’re just a piece of history. What do you want to be remembered for and how should motivate you on how you live.

Do you do anything now that you didn’t before, thanks to cancer? I balance of work time vs. non-work time. Give more of my time to not-for-profits whether that’s being elected official or in the community – local or online.

How has cancer changed your life for the better? It puts things in perspective; helps prioritize.

Does cancer run in your family? I have Lynch Syndrome, my dad and grandpa both had colon cancer as well as my older brother.

How does it feel to have Lynch Syndrome? It’s disappointing but it’s not devastating. Almost everybody goes through life with some sort of road block or obstacle to get over and until you know what it is, it’s hard to focus on it.

RANDOM INFO ABOUT DAVID

Family: Robin – wife of 18 years. I also have 3 boys – Zachary, Corey, Maxwell.

Job? Depends on the day; own a medical supply business – irony is that we sell ostomy supplies. I also do professional voice over work.

First job? Delivering newspapers on long island via bicycle

Preferred toilet paper brand? Quilted Northern

Most interesting place you’ve lived? New Orleans; I went to school there and played college soccer.

What do you do for fun? I am a NY Giants fan, love the Barcelona international soccer team, I love to play soccer, be involved in the community, bake and I blog for therapy.

Read David’s Blog.

Gift Guide for the Colon Cancer Survivor

In just a few days, our newspapers will be shoved full of ads and stores will be going crazy! Black Friday is upon us! If you’re starting to make your Christmas shopping list and trying to figure out what to buy the colon cancer survivor in your life, we have a few ideas! Coming from a community full of “semicolons,” here are some gifts that some of us wouldn’t mind getting … and watch out, they may just be what some of us are giving!

Colon Cancer Survivor Gift Guide

What to get that special someone in your life…

1. Blue Star Jewelry

Not to “toot” our own horn – but if you’ve got a lady in your life who’s defied the odds and kicked some cancer tail, consider getting her one of these pieces of jewelry from our store. The “blue star” pendants are to die for, and absolutely stunning. We’ve got blue star necklaces and bracelets – both which make great gifts!

2. Workout Stuff

There have been headline after headline lately about the benefits of exercise – with one being cancer prevention. Odds are that survivor in your life has heard this, and is finding ways to get in a workout routine once in awhile. Some ideas for their goals could include nice workout shirts or jackets (like the ones in the Get Your Rear in Gear store), racing shorts, a running hat or even shoes. Or, here’s a great hard plastic travel cup! If they have the gear, consider a workout video or some new equiptment!

3. Cookbooks for Healthy Cooking

Going hand-in-hand with exercise is healthy eating. Many survivors are looking for new recipes when it comes to their diets and their colons. Some who’ve had resections struggle with IBS-type symptoms. Others have constipation. And then some even deal with Crohn’s and Colitis, and are looking for good meal ideas. Consider this IBS Cookbook, or even a Crohn’s and colitis cookbook for your special someone.

4. Lessons for Something FUN!

Part of surviving cancer involves realizing that life is full of opportunities! Has your leading lady always wanted to learn ballroom? Has that survivor husband of yours always wanted to improve his golf swing? Consider signing up for lessons – either individually or together! It’s a gift that doesn’t only give a great experience, but lifelong memories – which is what we’re all about!

5. A New Magazine, Book, Amazon Gift card or Kindle!

We probably don’t have to tell you, but we will anyway. Colon cancer survivors um, spend some considerable time in the bathroom. So, why not boost their time with some new reading material? Get them a magazine subscription, or even a new book. Or if you have no clue here to start – get an Amazon gift card. Or if you’re really generous, look into a Kindle or an iPad for your tech-savvy survivor who’s moved on to digital reading!

6. A 2012 Colondar

Last but not least, if your colon cancer survivor doesn’t own a copy of the Colondar, you must give it to them. These calendars aren’t simply a way to track days and events – they’re inspirational pieces that will give your survivor hope and encouragement that they’re not alone. Buy one now – and even buy two, and give one to a friend. It’s one of the best gifts for a survivor, we promise!

The 2012 Colondar is Here!

The wait is over!

The Colon Club is happy to unveil the next group of thirteen remarkable colon/rectal cancer survivors.

Set in the natural outdoors of the Lake George, NY area, this baby is one-of-a-kind.

Models bravely reveal their surgical scars surrounded by rolling hills, blue skies and the natural outdoors. Each photo shows that there is beauty in cancer survival, even as unnatural or unusual as colon cancer before age 50 can be.

Buy a 2012 Colondar!

The 2012 Colondar Models | Colon Cancer Survivors

The 2012 Colondar features twelve new models that come from all over the United States. As always, our beautiful and amazing Erika Kratzer graces the cover as an 11-year, stage IV colon cancer survivor.

Photographed by the fabulous Mark McCarty and designed by the wickedly talented Troy Burns, the calendar is a beautiful work of art put together by an all-star team. We’re proud to add this to our shelf and welcome the new models into our family.

Learn More about The Colondar by The Colon Club

For 8 years, models have revealed their stunning abdominal scars as a way to represent their strength and shocking journey. The Colondar has won several design awards and is respected throughout the colon cancer community and beyond. Dedicated to stage IV survivor Erika Kratzer, each year’s cover model, the Colondar furthers Kratzer’s mission to connect young survivors with one another and share a message of hope.

Learn more about the Colondar!

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