Mom says she saw blood in my diapers as a baby. My father had just had his colectomy eight months before I was born; my grandfather, the de novo FAP carrier in our family, died six years prior. Mom, who only found out about FAP in my dad’s family after I was conceived, was fiercely on the lookout for any signs that I, too, might have FAP. Fifteen years later, I became a third generation previvor.
In my family, whining got you nowhere. “You don’t get a choice. You might as well suck it up and get it done.” That’s what I heard for years as I underwent colonoscopies which, at the time, were performed sans conscious sedation. I took this stoicism with me as best I could to the Cleveland Clinic, FL for my colectomy and j-pouch creation.
I remember vividly the day of my first surgery. It was late May, 1993, and I had just finished my sophomore year of high school. At 6’0”, 160 lbs, I would eventually rejoin my classmates 2” taller and 50 lbs lighter. Nurses were flying around prepping me for surgery. I laid in the bed internalizing my fear and doing little to hide my fascination. An IV was started, leads for an EKG were placed, the blood pressure cuff started its cadence of inflating and deflating, and machines were flanking me with beeping and flashing lights. It’s crazy to think I was only fifteen years old. Although I knew my entire life this day would come, and fully recognized I was powerless to prevent it, there was no way to be mentally prepared for a surgery that simultaneously alleviates the risk of colon cancer while negatively affecting quality of life.
My family sat around me waiting for the word that it was time. When the nurse came to take me to surgery, my mom kissed me and told me she loved me. I responded with all the false bravado a fifteen year old could muster, “See you on the other side.”
When we exited the elevator, I felt like we were in the bowels of the hospital. The halls were dimly lit and very cold. Nurses packed me in heated blankets and left me in the hall to wait a short time. Countlessly, I answered the same questions…”What’s your name?”…”What operation are you having?”…”Do you have any allergies?”
I was actually relieved once I wheeled into the operating room. My surgeon, Dr. Juan Nogeuras, now Chief of Medicine at Cleveland Clinic, FL, exuded confidence. His table side manner resolved any question of his ability to successfully perform the procedure and reinforced the feeling that my life was safe in his hands. Once they started the anesthesia, I was asleep by the time I counted down to five.
I woke up to a mind clouded by morphine, yet still feeling the intense pain from the surgery. I was as prepared as possible for entering the operating room, but had no idea of how bad I would hurt afterwards. A week later, as I left the hospital, all I could think of is that I’d be back in two months for round two. Thankfully, learning to live with a temporary ileostomy kept me somewhat occupied during the space between these surgeries.
Outside of the increased medical testing in my early teens, I was a normal kid. I rode my bicycle, read books, went to the arcade, and did my homework. After my surgery, though, life took a little getting used to. Living in south Georgia, humid summer days meant starting to sweat as soon as you left the house. Suddenly, dehydration became an issue. Through painful, undesired experimentation, I found out that I had scar tissue around a loop of my small intestines that meant digesting leaves and potato skins led to blockages. Life with a j-pouch required extra consideration to the amount of time I could be away from a toilet.
Life never returned to normal but, instead, grew into a ‘new normal.’ At 37, I realize I have a ‘love-hate’ relationship with the scalpel. I believe it is due, in part, to the skilled hand of my surgeon that I have lived to this age. But growing older means upping the odds that I’ll grow a polyp in my duodenum that cannot be removed without surgery - the fated “Whipple” procedure which requires removal of parts of the stomach, duodenum, and pancreas, as well as the entire gall bladder. I have seen the effect of this surgery on my father, uncle, and cousin’s quality of life. The loss in quality of life my father experienced contributed significantly to his eventual death. In truth, it is the only thing that really scares me about FAP at this stage of my life.
I consider my experience fortunate when compared to all of the FAP-health issues others in my family have experienced. Aside from being conscious of water intake, the nearest bathroom, and staying away from roughage, I feel no different than anyone else. No one can tell I am living without a colon. I have played soccer, bartended, worked in construction, completed a PhD, travelled
around the world, and backpacked all over northern California. Currently, I work part-time as a snowboard instructor in the winter and lead tours on horseback during the summer. I am hindered very little by FAP and my surgeries.
As the Founder of the Hereditary Colon Cancer Foundation, I now find myself preaching the importance of prophylactic surgeries at the hand of an experienced surgeon. I also staunchly support seeking second opinions when confronted with surgical options beyond a colectomy. Too frequently, patients undergo invasive surgeries, perhaps unnecessarily. I worry about patients accepting the recommendations of physicians who do not specialize in the care of hereditary colon cancer patients.
Patients contact me with a belief that having a colectomy equates with the end of living. They are fearful that they will not be able to continue doing the things they love. They are unsure of the future and are scared. I use my story as a source of inspiration and hope for them. I assure them that these surgeries are fierce storms that one must endure, but storms that will pass nonetheless.