My family has no history of colon cancer and I’d never heard of FAP so it came as quite a surprise to me when I was diagnosed with both last spring.
In April of last year I went to the Choctaw Health Center in Talihina, Oklahoma, because I was passing blood. Quite a lot of blood. The morning I went to the clinic I tried to run an easy two miler but had to walk much of it. I’ve been a runner for nearly 15 years and loved long double-digit runs so my inability to finish two miles told me something bad was afoot. I also had a strange sensation in my lower left abdomen. So, I knew this doctor visit wasn’t going to be a simple in and out.
The doctor suspected I was anemic due to my lack of color and the blood work confirmed it. Normal hemoglobin levels are in the 13-15 range. Mine was 7.5. He was surprised I hadn’t passed out. So he admitted me and started me on ferrous sulfate and gave me two units of blood.
Two surgeons came to see me and assured me this was most likely hemorrhoidal and a simple tying off of the vessel would solve the problem. Surgery was scheduled for the next day and nothing would ever be the same again. I woke in recovery and was told my colon was filled with polyps. Hundreds. And it was most likely a genetic disorder that would require my colon to be removed. My surgeon suspected Gardner’s Syndrome and scheduled an appointment with a surgeon at OU Medical in OKC because they had everything I might need there. Geneticist, cancer center and top-notch surgical team. Genetic testing showed it to be FAP and not Gardner’s and I was scheduled for surgery a few weeks later.
Surgery went well. My diseased colon was removed and the j-pouch was built along with an ileostomy that I was expected to have for three months. That was later changed to eight months due to six months of chemo they didn’t want to interrupt with recovery from surgery.
Amazingly 39 days after the colectomy I was back to running. Within a week I was running 10-15 miles daily. My surgeon and nurses all contributed my amazing recovery to being in such good shape coming into this. And I kept running through chemo. Only stopping at the very end of treatment because of low hemoglobin levels brought on by chemo.
Chemo wasn’t as bad as I had expected. The only side effects I had were numb toes from neuropathy, hands that would shrivel in very cold temps, and slight fatigue for a few days following treatment. I actually gained weight during treatment. I was able to work and go about my lifestyle without interruption. I kept my hair, with the exception of the hair on my legs, which fell out within a few treatments.
A few weeks after chemo ended my Ileostomy was removed at OU Medical and all blood tests and PET scans have thus far shown me to be cancer free. The j-pouch still has some getting used to but all in all this very bad situation has gone incredibly smoothly. I go back to OU in a few days for my post surgery check-up which I expect to go well. Hopefully my surgeon will give the clearance to run again. All will be right in the world.