Having 12 to 15 bowel movements a day is not something anyone would want to deal with, especially not a teenager. But that was exactly what started happening to me my junior year of high school in 1987. I was a healthy kid, even playing on the football team, but I started dropping weight. I went from 132 pounds down to 96 pounds before the doctors diagnosed me with Crohn’s Disease, which is an inflammatory disease of the digestive system.
In order to get some weight back, I was placed on steroids. I graduated high school at 110 pounds, but I would not be able to reach my previous weight of 132 for the next 14 years. All through my 20’s, clothing shopping was a chore. My waist was only about 27 inches and men’s pants started at a size 30. Hello, kids section! But kids’ pants were full of snaps and zippers and looked like a child’s pair of pants.
I continued on steroids for years and years. There was really no other medication my doctor thought to give me to control my Crohn’s. So, I continued on with my life-long hobby of mentally mapping every restroom in the world. That made dating fun, too. A two-hour date, meant about 75 minutes getting to know her and 45 minutes getting to know the graffiti in the bathroom stall. Needless to say, I only had a handful of dates in my 20’s.
During one of my routine colonoscopies in 2002, the doctor discovered what he called “weird cell formations.” He wasn’t sure if they were cancerous, but even if they were not, they could be a breeding ground for cancer in the future. So, it was decided to remove that section of my colon. My doctor was retiring, so he wouldn’t be around for my surgery in April of that year. The surgeon he set me up with was great and he gave me a lovely eight-inch incision right through my belly button. A biopsy was performed on the section of removed colon. It was benign. Whew! My surgeon then recommended a new gastroenterologist for me.
Right from the start, I didn’t make this new GI doctor’s life easy. My digestive system did not start back up properly after surgery. I was losing weight daily. I couldn’t eat anything. He would phone in different prescriptions for me each day. Luckily I lived with my cousin who was a manager of a pharmacy. He basically brought the store home to me. None of the prescriptions worked. I was really worried that I wasn’t going to make it.
Then we tried a new drug called Remicade. Remicade is a biologic therapy that reduces the inflammation in the digestive system. It’s administered via an I.V. infusion. About two days after my very first infusion, I was seeing results. I could eat again! (That’s always nice.) Plus, I was not using the restroom every few minutes. In fact, my 12 to 15 bowel movements prior to surgery were reduced to one or two a day. I was like Pinocchio…a real live boy, again!
For the next five years, I thought Remicade was a miracle drug. I could eat food and keep it in me. My weight reached a maximum of 149 pounds. My softball coach told me that some of my teammates were asking if I was on human growth hormones or something. Nope! I was just normal again for the first time in 15 years. I was so happy. I could even go on a dinner date. Not to any spicy restaurants, though. Let’s not go crazy here!
For the next few years, the only problem I encountered was incisional hernias. My incision from the colon resection did not heal properly. Year-round, I am always playing sports and lifting weights. That was too much for the internal stitches to handle. I waited the mandatory eight weeks to resume activity, but that wasn’t long enough. So, a year after having surgery, I was back on the operating table to correct the hernia. This time I waited 12 weeks before resuming activity. I caught the flu later that year and a bout with vomiting popped that sucker right out again. Ugh. So, another year had passed and I was having my third abdominal surgery in three years. It was upsetting me and my softball teammates as I was not able to pitch for them. I love playing softball and just sitting around doing nothing was killing me!
Guess what…yep, the hernia came back a third time! I decided that surgery wasn’t working, so I was just going to live with it. It didn’t hurt at all. Instead of an “inny,” I had an “outy” belly button. Oh well. So, for the next two years I was feeling great until in October of 2007, I caught another bug, or so I thought. I had a low-grade fever that would not break. For the first several weeks, I simply waited for it to go away. Then I went to see my doctor. He thought it was also a lingering bug. Crohn’s Disease lowers the immune system, so it takes me longer to fight off an illness. I went home and waited it out.
One Friday night, my fever shot up pretty high. I couldn’t just sit at home. I checked myself into the E.R. About 14 hours later, my CT scan showed abnormalities in my colon and liver. The E.R. doctor said, “It could be cancer.” The nurse had tears in her eyes, so I knew it probably was. He talked to my GI doctor and they scheduled a colonoscopy for Monday morning. My GI doc was not able to perform the colonoscopy because the cancer cells had almost completely blocked my colon. He could not get the camera through.
While I was still groggy from the medication, the doctor called my mom. He was audibly upset as he said to her, “I don’t know what to tell you. I have not seen cancer grow this big this fast. I don’t have any answers as to why.” I had a colonoscopy two years prior and everything was perfect. So, in two short years, I went from healthy to colon cancer stage 4; it had spread to my liver.
An appointment was set up for me to see an oncologist at Georgetown University Hospital. The first thing we had to do was place a stint in my colon to make sure the cancer would not completely block my colon. I had a choice of doing that the day before or the day after Christmas. Knowing that the day prior to the procedure I would be drinking a gallon of ex-lax, I opted for the day before Christmas, so I wouldn’t be drinking it on Christmas day. I thought a lump of coal was a bad gift!
The procedure with the stint worked well and it was time for me to begin chemotherapy. Because I was “young enough and strong enough” no one at Georgetown was receiving more chemo than I was going to receive. My first treatment knocked me for a loop. I didn’t even have the energy to watch TV while lying on the couch. I couldn’t keep my eyes open. My red blood cell count had dropped, so I needed a blood transfusion. I was wondering if this was going to happen every treatment cycle. Luckily, I never needed one again, but I didn’t know that at the time.
The next few cycles of chemo led to various side-effects. Insomnia was one and the drugs to put me to sleep gave me nightmares of clowns trying to kill me. But, the “best” side-effect was constant hiccups for four days. Try that one sometime. It was such a joy! And, of course, there was the vomiting and the diarrhea.
After several cycles of chemotherapy, I had another CT scan and my tumors had all shrunk. But, instead of receiving good news, my oncologist said, “You’re inoperable because there are too many tumors in the liver. We are just going to keep you alive as long as possible.” That is not something you ever want to hear. I chose not to listen and I went for a second opinion at Johns Hopkins in Baltimore. The oncologists at Johns Hopkins concurred with my oncologist at Georgetown. But, they sent my case to their tumor review board. One of the members of the board was an oncologist liver surgeon. I received a call from his office and paid him a visit. “I have a risky procedure we could try. I’ve only tried four of these in the past, but they’ve all worked,” were his words to me. Risky? Not doing anything is more risky, I reasoned. Let’s do it!
I stopped chemo after three months so my liver could be healthy for surgery. “How about April 23rd for surgery,” he asked. “Perfect. That’s my birthday!” We actually moved the surgery date up one day, so it didn’t end up being my birthday. The risky procedure consisted of two surgeries. The first surgery would remove the tumor portion of my colon. It would also remove the three tumors on the “good” lobe of my liver and cut off the blood supply to the “bad” lobe of my liver that had nine more tumors. Essentially, the bad lobe of my liver (as well as the tumors) would die inside of me in the coming weeks. The cool thing about the liver is that it regenerates. While the bad lobe was dying, the good lobe would be getting bigger. The surgery was a complete success!
I spent the next eight weeks recovering and then it was time for follow-up surgery on July 1, 2008. Great, I’ll be able to watch the fireworks on PBS! That surgery was also a success and by July 2, there was no visible evidence of cancer in my body. Unless you’ve been there, you can’t imagine how great it was to hear that.
The worst part of this surgery was that I put on over 30 pounds of water weight in less than 24 hours. I couldn’t wear socks or underwear for about a week because they wouldn’t fit! I was in bed looking down at my body and wondering whose body it was, because it couldn’t be mine. Now I had a challenge. I had five weeks to lose this water weight and build back enough strength to pitch in the season-ending softball tournament for my alumni team. Normally after liver surgery, the rule is no physical activity for six weeks. I was determined to ignore that rule. Three weeks after surgery, I was able to get off the couch and walk a few laps from my kitchen to my living room. That gradually turned into walking outside and then jogging. My surgeon cleared me to play softball! I was so happy.
Allow me to brag for a minute. I pitched seven games that weekend for my team. Out of 70 teams, we finished in third place. Everyone on the team hugged me after the first game and they all wore gold arm bands in my honor for the entire tournament. I cried countless happy tears that weekend.
Now that I was recovered from both my surgeries and was in remission, it was time to see my oncologist at Georgetown again. He told me that I am “living data” because my procedure is so new that we don’t have a lot of statistics on it. Normally, he preferred to have his patients do a total of six months of chemotherapy. I had already done three months over the winter, so that would mean three more months. But in my case, he wanted to be sure it doesn’t come back, so I began a full six months more of chemotherapy. It wasn’t what I wanted to hear, but I couldn’t argue with being sure. Those latter cycles of chemo made me extremely fatigued, but that was pretty much the only side-effect. Having no visible cancer and being declared in remission is such a great feeling!
The year 2008 was not the favorite year of my life, but I got through it. I wasn’t alone, though. My mom, Chris, and my uncle, Jack, drove from Pennsylvania to spend time with me about every other week during chemo. My cousin, Dwayne, lived with me so he was always there. My girlfriend at the time, Jen, took time off from work to sit with me during chemo treatments. My friends, Michelle & Mark, Carrie, Michele, Katherine, Michelle & Fish, Rebecca, Mary, Joe, Bryant, Charlie, Gale, Jill & David, and Kelly helped me with regular visits, food deliveries, and watching sports. Gina’s parents sent me get well cards every single week while I was undergoing treatments. There were so many other people, too. Too many to name, but the phone calls, emails, greeting cards, and text messages were always appreciated. It was incredible to see how many people cared.
That was supposed to be the end of my biography, but cancer had different plans. The month after the Colondar photo shoot, a CT scan showed that some cancer nodules had returned to my liver and new ones formed on my lungs. So, as you are getting your first glimpse of the 2010 Colondar, I am back on chemotherapy until they are gone. At the time of my first diagnosis, I had 13 tumors. Now, I have seven nodules that are too small to operate on. Maybe I’m being naïve, but “I got this.” This time on chemotherapy, I am prepared because I know what to expect, I’m mentally and physically stronger, and I now have a bunch of past and present Colondar models who will keep my spirits up at all times. Losing is not an option.
UPDATE: We are sad to share that Shawn Felty passed away on December, 13, 2009.