Wendy’s Story – A Mother Lost

Amber & Michael

by Wendy Touchette

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

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

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

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

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

The Joy and the Sorrow of Cancer

Angie Laroche and Belle Piazza

Angie Laroche and Belle Piazza

by Belle Piazza

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

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

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

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

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

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

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

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

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

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

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

Dear Colon Cancer

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by Jose Baez

Dear Colon Cancer,

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

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

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

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

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

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

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

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

A Survivor

God and Cancer

Birds

by Belle Piazza

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

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

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

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

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

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

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

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

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

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

Coping with a Cancer Diagnosis

sarahbike

by Eric Johnson

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

March On!

Michael COC

by Belle Piazza

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

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

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

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

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

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

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

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

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

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

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

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

Lessons Learned

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by Janet Klostermann

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

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

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

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

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

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

Fitness Against Cancer

photo of Jose

by Jose Baez

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

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

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

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

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

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

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

Was It Worth It?

Leavenworth

by Belle Piazza

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

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

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

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

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

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

David Dubin is AliveAndKickn

David1

by Belle Piazza

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

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

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

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

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

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