Why I'm Training for a Half-Ironman -- Without a Stomach
They say numbers don’t change lives — but when 6-5-0 popped-up on my caller ID when I was 29 years old, it changed everything. It was an area code I had come to recognize immediately as it was the geneticists from Stanford University Hospital. They were calling to tell me that I had tested positive for a hereditary stomach cancer known as hereditary diffuse gastric cancer or (HDGC).
Nothing prepares you for those words. By the time I was 12 years old, I’d watched my grandma, aunt, father and sister succumb to the same form of stomach cancer. I used to think it was some kind of curse, but on that day, I found the answer I was looking for. It was a genetic mutation passed down, almost guaranteeing the development of stomach cancer. According the the geneticist at Stanford the genetic mutation is rare, affecting 1 in 500,000 people since its discover over 20 years ago. As of the writing of this post, a search on “hereditary diffuse gastric cancer” on Wikipedia yields a result of 108 words. Including headings.
HDGC is lethal because often times it is undetectable, despite advancements in modern science and medicine. Blood work does not reveal markers. PET scans cannot pick up a cancer that takes over each of layer of a stomach before moving on to the next layer. Endoscopy technologies are limited to the surface of the stomach. HDGC is incredibly aggressive, meaning, once symptomatic, I was told, one typically has a year to live.
The only treatment was a surgical removal of my entire stomach, with the caveat that I would never be sure whether or not I had cancer until after surgery. The choice to undergo a prophylactic gastrectomy was easier when my surgeon told me I could wait until I was symptomatic, but of the last five patients at Stanford who did so, three of them died within a year and the last two patients died within 3 years.
With my decision in hand, the question then became, “Can you live without a stomach?” Most of my answers I found online was, “No, life as you know it, was over,” until I found a handful of stories through No Stomach for Cancer. I read story after story of others who had lost siblings and parents from the same form of stomach cancer. Instantly I discovered a community. My stomachless journey would not be tread alone.
I underwent normal blood, PET scan, and endoscopy studies with experimental screening techniques which all came back negative, while at the same time setting out on what I called, “the farewell stomach tour” eating the most incredible meals without regard to calories or nutrition. The anxiety leading up to my surgery date lifted as I came across a photo of my sister, dad and me at a parade as a kid and paused realizing I was sole survivor in the photo. This surgery was going to change the story of cancer for my family, so after clear studies, in March of 2014 I said “farewell” to my stomach.
My post-surgical pathology revealed stage 1 cancer everywhere. Handing me the results, my doctor said, “You’re lucky. If you had waited a year, we would be planning your funeral.” They had removed my entire stomach as well as the lymph nodes, ensuring that any stomach cancer growths were contained.
Unfortunately, surgery was the easy part. It was learning to live without a stomach and dealing with the frustration of re-learning basic human functions like chewing and drinking water that was difficult.
As a pastor hearing others’ stories, I recognized that while the healing can be done out here (body), the slowest part of recovery takes place here (mind) and here (heart). This is where cancer community shines. I found encouragement within the context of a community of other bloggers who had undergone the same surgery within a year of my own. Part of my journey has been to give others an alternative story of hope by recovering as much life as I could and part of it was to return to a sport I had grown to love: triathlon.
What began as a painful 50-foot walk to the nurses’ station, in September of 2015 I completed my first Olympic Distance triathlon without a stomach, a time faster than I ever did with a stomach. Now, I’m training for my first attempt at a half-Ironman race in Santa Rosa, California, in May. I often get asked, “Why you do it? Why do you continue doing triathlon?” and for me it’s three things: First, I look at my two girls who each have a 50-percent chance of inheriting this gene, and if they test positive, I want to show them their dad went through this too and there is so much life to live, even without a stomach.
The second, is our faith. From the moment I was diagnosed my wife and I made a decision that we were both going to have to trust God because faith is trust directed towards God. As a kid watching so many of my relatives suffer from cancer, I was angry at God, but what I’ve come to realize about faith is not that faith protects you from all the hardships in life, rather it gives you the strength to carry through and allows you to choose the posture of your heart as you face hardships.
Last, is community because cancer is not a solo journey – caregivers like my wife Kate are the unsung heroes behind every cancer patient. My story represents just one of the thousands of those who are on various parts of the cancer journey, and I want to represent their stories well.
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