My Life As Of Late

This is my third attempt at starting a blog. I am not doing anything new here, I just thought it would be a good idea to write down some of my thoughts and experiences to share with others. I am sure my mom will read everything I write, but maybe a few of my friends will too, and maybe somebody will get something from reading my experiences. I also view this as a cathartic outlet where I can get things off my chest. If nothing else, many of my stories can serve as a good example of what not to do. Anyway...

The week after Thanksgiving 2011, I was scheduled to go into the Huntsman Cancer Institute for a checkup and to discuss the possibility of being on a new study. My family has a history of what is called Familial Adenomatous Polyposis (FAP), which is a genetic mutation that causes pre-cancerous polyps to grow in the intestines - mostly in the colon. Huntsman has been studying my family for many years, and my mom and grandma both had their colons removed in the early '90's. When I turned 18, I was registered as part of the genetic study at Huntsman. A simple DNA test showed that I had the gene mutation, and therefore was susceptible to colon cancer. I had already had two colonscopies prior to this last visit, and they didn't really find anything to be concerned about. My last one was in 2007, and they said because they didn't find anything, I wouldn't need another checkup for 4 to 5 years.

The purpose of my visit after Thanksgiving was to see if I could qualify to test a new set of drugs that had already shown promise in stopping cancer cell growth in lung cancer patients. To qualify, I would need to have a certain number of polyps above a certain size that they could study. They performed a colonoscopy and an esophagogastroduodenoscopy, and the results kind of caught everybody by surprise. I had hundreds of polyps throughout my entire digestive system - in my esophagus, stomach, duodenum, and colon. They cut out the polyps that fit into the most dangerous classification, but left in all of the rest to study. They mapped out my entire digestive tract very precisely so they would have a baseline to which they could compare future scope results. The whole procedure was pretty amazing to me. For those of you who don't know, Huntsman has the best doctors and best equipment in the world - and I only live 45 minutes away. That's pretty cool, if you ask me.

Needless to say, I qualified for the study. They immediately started me on the new drugs and gave me a packet of papers telling me everything I needed to know and do. To be honest, the list of side-effects was pretty scary to look at, but I figured it was better than the alternative. It took about two weeks for the first real signs of the side-effects to show. I developed a rash that looked like acne all over my head, face, neck, chest, and back. It hurt pretty bad, and it was really embarrassing going out into public looking like I did. Everything itched to the point of almost driving me insane. When I would shower, it would rip everything open and I would be bleeding all over. I couldn't sleep at night because every movement would hurt. It sucked. Luckily, the next time I went up to Huntsman they gave me a clindamycin cream, and later a hydrocortisone cream. Those two creams are the best thing ever. They are working very well, and the rash is quickly disappearing.

Other major side-effects I am currently experiencing include fatigue (like completely exhausted all the time fatigue), shortness of breath, a constant sore throat, loss of appetite (maybe a good thing), and some hair loss. All in all, though, it is tolerable. I have "safety labs" at the end of every month to make sure nothing is abnormal, but I won't really know how effective the drugs are until they do the colonoscopy and esophagogastroduodenoscopy again at the end of month six, and compare the results to the first set of scopes.

This whole experience has given me a new outlook on life, and I have come to appreciate everything I have so much more. So many people have come to my aid without being asked, and it is really quite an amazing thing to see. I only told a few close friends about what I was going through, and within a week I was being brought meals, firewood to heat my house, gifts, treats, etc. I have always been taught to be self-reliant, and I hate feeling like I am a burden to others, so it has been a little hard for me to be the focus of so much help. I don't really consider myself prideful, but this experience has given me the chance to let down some of my walls and allow others help me. I am still not totally comfortable being the center of so much attention, but I am extremely grateful for all of the wonderful people in my life and the amazing things they do. I have never known a group of people more charitable, kind, and capable of greatness, than the people in my life right now. The future looks bright.