Last Time?

by Leighanm  Sturgin

“Wonder if this will be the last time we’ll all be together?” said my new friend and colon cancer sister, Lindsey. We’d just spent the past 5 days at the 2015 Colondar 2.0 photo shoot with 10 other colon cancer survivors being treated like rock stars by the Colondar staff, many of whom are survivors themselves having modeled in previous Colondars. We were sitting in a Nashville airport restaurant waiting to fly home, back to our real lives. Back to places and people who didn’t understand us.

Lindsey’s question wasn’t referring to whether we could arrange our schedules or afford to meet back together. She was quite literally wondering if we’d all live long enough. I thought, “No, there is a Colondar model reunion in October in Colorado and Fight CRC’s Call on Congress we’d all been invited to in March 2016, surely this first time we’ve come together as a family won’t be the last.”

Sadly, I was wrong.

We all bonded in Nashville. We stayed in one giant house at the beautiful Five Star Retreat. The Colondar staff and models were all together for 5 days. You might think that’s too short a time to form lifelong bonds but it’s amazing how good it feels to be surrounded by people who REALLY understand what you’ve gone through for years. Those shared experiences made us feel like we’d been family forever as soon as we met. Some of us bonded closer than others or more quickly than others. For me and Christy, the bond was deep and instant. I chose to drive 3 hours to fly out of Pittsburgh with Christy instead of a closer airport. You might think both being from the Burgh was what bonded us so quickly but it wasn’t. It wouldn’t have mattered if Christy was from planet Mars. It was her. She was so amazing her eyes sparkled. For real. Her energy was genuine as it was contagious. She was one of those life-of-the-party types. I think everyone she met loved her. She had this unbelievable talent of knowing every word, to every song, in just about every genre. Not just the chorus…but ALL the words! She was a human Karaoke machine. She was strong yet so tenderhearted. The first one in tears when we had to leave each other. She was the last one to go to bed every night in Tennessee, so vibrant and full of life. We joked every night that she was ‘the last Colondar standing!’ I would’ve never pegged her to be the one who wouldn’t make it to see the 2015 Colondar 2.0 in print. Never. Ever. The BeachBody coach and fan of Shakeology, she was in MUCH better shape than me on our 3 mile hike through the woods. I swear it was up hill both ways. Everyone graciously stopped at least twice to let me catch my breath. Scott even offered to carry me on the way back! But Christy had no trouble at all. She even went paddle boating afterwards. If Energizer was looking for a new bunny, she would’ve been perfect for the job. She even had experience as her high school mascot.

A few of us have visited each other here and there. Whenever one of us is near a city another of us lives in we always try to get together. And we’ve all kept in constant contact via social media. I went to Pennsylvania in July to meet with Christy and her sister. We went to get tattoos of the blue colorectal star/ribbons on our wrists but when we got there Christy didn’t get one. I told her my docs wouldn’t let me get a tattoo when I was on chemo so she checked with her docs and they quickly vetoed the tattoo idea because she was in treatment. I still got mine and her sister got the word “LOVE” in Christy’s handwriting on her back. We had lunch and went shopping for the rest of the afternoon. We made plans to get together over Thanksgiving but she called me the day of our meeting and said she wasn’t feeling up to it, which I totally understood because I’ve had to cancel many things I wanted to do but just didn’t feel well enough myself.

Only two of us 2015ers went to the Colondar reunion. Despite Christy’s urgings I didn’t go. She even offered to drive the 1500+ miles with me to get me to go because flying with TPN and a high output ileostomy can be challenging for me. I wanted to see Scott again and meet his beautiful wife. And as fun as I thought a road trip would be with Christy, she couldn’t talk me into going. With marching band, football and soccer season in the fall, I didn’t want to miss any of my kids activities. I didn’t know it at the time when we talked about going together but that weekend ended up being homecoming and my son, a freshman, had his first date to a high school dance. As I stood in the cold, taking pictures of him and his beautiful date, I told my husband how glad I was that I didn’t go with her. I would have been so sad if I had missed seeing him all dressed up for that dance. I’m not even sure he would have asked the girl if I wasn’t home to take him shopping for dress clothes.

But now, today, I’m kicking myself for not going with her. I can’t go back and change my decision so instead, I will cherish the time I did spend with her and be thankful for the short time I knew her. I am positive I will always love her and never forget her.

She fought the good fight. Surrounded by love both near and far, on February 3, 2015 Christy Joyce Schmieler, 33, (aka @flutie75) finished the race.

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.

2015 Colondar

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.

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.

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

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.

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

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.

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.

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.

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.

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.

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.

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.

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.

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!

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.

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.

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.