There was a 3 hour TV special on the Discovery Channel on Sunday night May 6 2007, "Living with Cancer." The show was hosted by Ted Koppel and featured Lance Armstrong and Leroy Sievers followed by a town hall-type meeting with Lance, Leroy, and Elizabeth Edwards. The audience included oncology doctors/staff, cancer patients, cancer survivors, cancer support organizations, and care givers. There are clips of the show out on the web and can be found easily using Google. There were a few key points communicated that I wanted to recapture here due to their importance into providing insight into how I feel and my situation. I could relate most closely with Leroy Sievers. He is a normal guy with a killer disease. I'm amazed at how well he is doing and how a new "untested" protocol (Radio Fequency Ablation) for his type tumors saved (or significantly prolonged) his life. I must admit, given my situaton, I am a bit jealous by his success, but very pleased by it as well.
1) At this point in my disease, it is the chemo that makes you feel sick, not the cancer. I often think that the cure is worse than the disease. It creates fatigue, sore bones, numbness in the fingers/hands, and a general feeling of just not feeling well, flu-like symptoms that last for weeks (or months). I took a chemo break in February 2007 and the tumors in my lymph nodes grew very quickly. I could feel changes in them almost daily. Now that I've been back on chemo for the past 8 out of the last 10 weeks, only one tumor is visible on the most recent scan and it is small (.8 cm). I feel it daily hoping it will go away. It hasn't yet, but it might with the next week’s treatment.
2) Many people say that I'm brave and courageous to be going through all this. I feel strong and sometimes optimistic, but not brave and courageous. I want to live and this is my chance at living longer with some okay quality of life. As long as my near term quality of life outweighs my death, I will continue to fight daily for those treatments which keep me alive.
3) I want my doctors to be honest with me and proactive in their treatment recommendations. I have let my doctors know this up front and they are honest with me. At times I seem to lead the way as to generating their being proactive. It takes a little prodding at times, but they are respectful of my inquires and suggestions. I spend a reasonable amount of time on the web looking at treatment options. I always write out my questions before seeing each specialist such that I don't forget to ask a question or chicken out in not asking because I don't want to really know the answer.
4) The anxiety created by this disease is intense. I take anxiety reducing medicine 3 times a day. Reasonably low dosages. I also try to do things that take my mind off the disease. This includes listening to my favorite playlist on my MP3 player (about 50 songs out of 400+, mostly 80s stuff), helping my daughter with her homework, throwing pottery on my new pottery wheel which I bought used a few weeks ago, and doing good things for my family and friends. I also really like golf, but the chemo has eaten away enough of my stamina that it is difficult to play right now.
5) Death. This is kind of the elephant (or whale) in the room. I haven't yet been afraid of death, not that I want to die, don't get me wrong. There was one night in January where the chemo sickness was so bad that I thought I would die. The weather had been nasty for about a month and I had been in bed for weeks. I'm generally an active person. I called my spouse into the room, told her it might be my last night on this earth and that if it was, I was ready. I cried a bit thinking about all the people I would be leaving behind. She comforted me for a few hours. I told you earlier that she is terrific. She didn't believe it was my time. I eventually fell asleep and woke up the next morning.
The above ends my recap of what I found important and insightful in the "Living with Cancer" special. Here are a few links to program clips to save a little time in finding them yourself on Google (should you be interested)...
http://dsc.discovery.com/convergence/koppel/koppel.html
http://dsc.discovery.com/beyond/index.html?playerId=203711706&categoryId=226602802&lineupId=791793396&titleId=792434655
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