Written: September 2, 2015
The best chocolate has a bit of bitterness. The best coffee is black and something one learns to enjoy. Whiskey is best taken straight and followed by the sweet satisfaction of being tough enough to enjoy it without a chaser. Similar sentiments hold true here. I live a fortunate life; one that many dream for.
But, as 'every silver lining has a touch of grey", so does every day require a “look in the mirror.”
Born two years older than I, my cousin, Joseph (named changed), was born with the exact same strain of FAP as I. We were diagnosed at about the same time and underwent our colectomies at about the same time. In 1993, we were both healing from the creation of our J-pouches and learning how to live with our new bodies. Twenty years later, we are the poster children of the best and worst case scenarios.
The past two decades have been kind to me. With the exception of two small windows of time, I have lived a hard but charmed life. I can look back on the completion of a PhD, the marriage to a beautiful soul, and the formation of an organization that is positively impacting the lives of thousands of individuals living with hereditary forms of colon cancer.
In stark contrast, Joseph now lives under the care of his mother and eats through a feeding tube. FAP has not been so kind to him. For reasons that I do not fully understand, his condition grew enormous teeth and a voracious appetite. He has undergone surgeries to create a J-pouch, recreate his J-pouch, and to create a BCIR. He has received a whipple surgery, involving the removal of his gall bladder, part of his pancreas, part of his small intestine, and part of his stomach. Last year, his entire stomach was removed. He has has come to terms with the reality of his situation. His desire to be a health care practiioner will likely go unfulfilled. The last time we spoke, he was under 100 lbs and still losing about a pound a day.
For those reading, I want to strongly emphasize that his experience is not at all the norm. Having spoken with Dr. Richard C. Boland, widely respected as one of the world’s leading GIs (now retired), I knew that Joseph was receiving bad medical advice and worked very hard to keep him from undergoing his gastrectomy. Sadly, he was not interested in receiving my support.
Joseph and I have not been close for some time now. I don’t think I’ve seen him in nearly twenty years, although I am close to his mother and, through her, have kept up with his health. Honestly, I had been none too quick to reach out to him until recently. For the longest time, when I thought of him, I thought of the line in Days of Thunder:
Reflecting over the years, I am disappointed by our reticence to reconnect. It’s silly, foolish, and riddled with stubbornness…all traits running strong in our family. Catalyzed by my dad’s passing in 2010, coupled with the work we do through the Foundation, I have become quite interested in catching up with him. For me, to see him would present an opportunity to stare in the face exactly what could have happened to me…perhaps what did happen in an alternate universe. I can’t help but wonder if it would be the same for him. Both of us staring into some warped, Twilight Zone-esque mirror. Same disease; grossly different experiences and outlook.
I hope it happens. I hope that, one day, we can come together. I wish I could support him and be there for him. Four people in my family have FAP. I only have a relationship with one (my aunt). It would mean the world for us to be a family.
So to you, I ask:
Is there someone in your family that you’re not talking to because of an issue related to this silly disease?
Someone who doesn’t share your view on family planning?
Someone who would go to a different doctor if they were you or undergo a different procedure?
Someone that is more healthy than you because they don’t have a hereditary form of colon cancer?
Someone that is less healthy because they do?
Call them! Write them! Do something!
Hereditary colon cancer already has the ability to take our family members and quality of life. Don’t let it take your happiness and relationships, too.