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

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.

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?

DSC_0205 pa

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.
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

Andrew Elder

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

Chiro Tree


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

todd and leighann

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!

Angie, Doug & Belle

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.