Colon Cancer Survivor
A Little Hope Goes a Long Way
Growing up on a horse farm taught Kenny Toye valuable lessons. His parents raised him to be independent, and he always did what it took to get a job done. Kenny drew on those traits to help him survive colorectal cancer. Today, he is committed to ensuring no one ever feels like they’re going through treatment for colorectal cancer alone.
In my early twenties, I was living the dream in Hawaii. I was one of those guys who could set my watch by my bowel habits. When I started going to the bathroom more than usual, I chalked it up to working three jobs and doing regular twenty-something stuff. It took about six months for me to realize how often I was actually going.
I usually called my parents in Washington to brag a little about how there was no snow on the beach. This time, I told my mom that I’d had a lot of diarrhea, and she urged me to see a doctor.
My doctor was on vacation, and I saw a female doctor instead. She examined me and told me I was fine physically, then asked if I had any concerns. I was scared out of my mind but thought if I didn’t say something right then, I never would. I told her I’d been going to the bathroom a lot and that, sometimes, there was blood. I told her I wasn’t in pain and asked if she could give me a pill. Instead, she gave me a rectal exam.
She didn’t feel anything, but she wanted to follow up with a sigmoidoscopy. She also asked me about a family history of colon cancer, and I told her my aunt had it twice at a young age. I made an appointment for three months later.
The sigmoidoscopy was a little uncomfortable, but I went to a mental happy place (playing basketball) so I didn’t have to pay attention. The doctor said he saw some irritation and wanted to do a full colon exam. He scheduled a colonoscopy for that Friday.
During the colonoscopy, the doctor took tissue samples and told me he’d call me the following week. The bowel prep had cleaned out my system, and I felt freer and lighter than I had in a long time. The doctor called on Monday. He didn’t say anything about cancer, but he said to come in and the sooner, the better.
I went to his office after work. There were pamphlets laying around for Irritable Bowel Disorder, Crohn’s and cancer. I wondered which one I had. I figured it was probably IBD or Crohn’s, and I wondered if I’d need to change my diet.
When the doctor came in, he was very serious as he told me I had colon cancer. The irritation he saw was a large mass. I asked him what my chances were. He said he couldn’t answer that, but he’d scheduled me with a colon/rectal surgeon that day. He handed me a pamphlet, and I didn’t hear anything else after that.
Two days later, I had more tests and a thorough discussion with the doctor. He told me about Lynch syndrome, a genetic condition that increased my chance of getting colon cancer. He recommended genetic testing, which confirmed I did have Lynch syndrome, and radiation and chemotherapy before surgery.
Because radiation could affect my fertility, he asked if I planned to have kids. I didn’t have a serious girlfriend at the time, so I asked my mom and sister for advice. I chose to have my sperm cryo-preserved and stored. It might be a tough dating conversation one day, but it doesn’t keep me up at night. The right girl will understand.
I started radiation and oral chemotherapy that week. I had tattoos placed on my hips and lower back so they could line up the radiation beams every time. I had 25 rounds, five days a week for eight weeks. The pills were like horse pills, and they made everything I ate and drank taste like pennies. The radiation was easy at first. About the fifth week, the tumor that was breaking apart began to shed, and passing it was like passing lava. I didn’t want to eat or drink because I didn’t want anything to have to come out. Topical creams helped, but it was really painful.
After my body healed, I had surgery. Because the Lynch syndrome upped the chances of the cancer returning, my surgeon did a complete colon removal. My mom and sister came for the surgery. When I woke up, the first question I asked my mom was, “The cancer’s gone, right?” It was, but I also had an ileostomy, which was a tough adjustment.
I started chemotherapy about three weeks later, as an insurance policy. I wanted to know I’d done everything I could to eliminate the free-roaming cancer cells.
The next year and a half was rough. I lost about 80 pounds. I was depressed and struggled with body image. My doctor encouraged me to eat anything just to get my bowels moving. I did, and finally began to feel more normal. Then, for some reason, my intestines “woke up,” and the surgeon removed the ileostomy and reconnected my intestines.
Hawaii is paradise, but an island can be isolating even when you’re healthy. I had support from my best friend and some visits from my family, but I felt like I was the only 25-year-old around with colorectal cancer. However, knowing I got cancer because of a defect in my genes helped a lot. It made me realize I didn’t do it to myself.
My treatment took about three years. After it was over, I took a job training horses in upstate New York. I wanted to talk to someone about my diagnosis, and I happened upon a colorectal cancer support group online. From that, I was connected with the Colon Club and became part of their “Colondar,” a calendar dedicated to educating people about colorectal cancer by featuring people who’d been diagnosed at a “younger-than-normal” age. I met 11 other people who’d been diagnosed in their 20s and 30s, and we bonded instantly. Just talking to them was infectious, and I felt like my soul started to mend. I realized that if I could feel that way just by talking to someone, I might be able to offer the same help to others.
I am a Fight Colorectal Cancer advocate and am passionate about offering hope. I want that guy who is 25, single and living out in Timbuktu to know there is another guy like him that is doing just fine. A little bit of hope goes a long way.
