When is Enough, Enough?

Crossroads

by Belle Piazza

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

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

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

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

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

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

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

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

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

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

 

 

Sex After Cancer

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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

Clinical Trial

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

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by Janet Klostermann

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

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

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

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

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

The Best Defense is Good Insurance

by Andrew Elder

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

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

Insurance Plan is Best Line of Defense

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

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

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

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

Guaranteed Issuance

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

Federal Subsidies

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

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

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

ACA Federal Assistance Chart - MVP Health Care

Image source: www.discovermvp.com

No Annual or Lifetime Limits on Care!

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

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

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

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

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

Scanxiety and Being a Crumb

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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

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

Family and Money

by Andrew Elder

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

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

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

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

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

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

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It’s About Forgiveness

forgive

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.