Tuesday, May 5, 2009
It was a late night back in the summer of 1991. My mom had come downstairs to talk to me. At that time she was very ill. Several months earlier she had both of her kidneys removed due to cancerous tumors as the result of a genetic disorder that had been passed to her from her mom, which was then passed on to my older brother and me. The biggest problem with her surgery was not because her kidneys had been taken, but that they were taken too late. The cancer had already spread into her renal veins and then into her lungs and spine. We didn’t know the extent of the damage on that night, but she knew that her time was limited. The reason for the late night talk was that she wanted me to promise her that I would always be diligent and stay ahead of our genetic syndrome. To always monitor the potential growth of damaging tumors and cysts throughout my body in order to avoid what had happened to her. Because the disorder had been discovered in our family when I was only 13, I didn’t have a choice when it came to making appointments for CT scans and X-rays. But in 1991, I was an adult, and recovering from traumatic series of surgeries. My brother had been an adult when he was first diagnosed and avoided keeping up with the progress of the disease, because he felt that if there were no symptoms there was nothing to worry about. Having been through numerous surgeries and procedures during my young life, and having to drop out of college before nearly dying that year, he was up in Seattle living a healthy and vibrant life. In other words, I could understand the appeal of his position and I think my mom sensed that. I agreed to her request anyway - knowing that she knew best.
Since that talk, I have kept up with my promise. My mom did not take care of herself, because she was too concerned about the health of her two sons. If she had made her check-up appointments the way she had always ensured that I did, she might still be here today. If my brother had followed her advice, he might not be in a wheelchair and struggling with the minutiae of daily life that we mostly take for granted. On the other hand, I am doing better now than I have in years, because of the early detection of problems through constant check-ups.
Yet, here I am today. I went to see my nephrologist today to make sure my transplanted kidney is doing well. It has been 4 ½ years since my transplant and life has been pretty good. The strange thing is that I didn’t partake as I usually do during my appointments. I didn’t tell her about the recent pains I’ve been having in the new kidney, or the sharp pain I sometimes feel in my abdomen. These things may be nothing, but this is becoming a pattern. I told her about my brain scan in March and that I was instructed to call the office for the results a few days later and that I still haven’t. I’m not sure what is going on, but I find that I don’t care to know anymore. I already know that I have (at least) five cysts in my head and that someday I’ll most likely have to have some surgeon drill in there and try and remove them. I just don’t want to think about it now. I am used to having bad headaches every day. I can wait till they get intolerable. While I was in the waiting room this morning, trying not to stare at my favorite receptionist, I was reading about how the radiation a body can absorb from a single abdominal CT scan equals 1.5 years worth of X-rays received from the sun. This doesn’t seem good to me considering that I am nearing my 90th CT scan this fall. This info just made me laugh. I've always wondered if these damn tests are what will eventually get me. I don’t know where my head is these days. I don’t know if it’s that I don’t care anymore, or if I am simply worn out by being on a leash to a team of specialists, or if I am afraid of losing the small bit of independence and health that I have received from this new kidney. That last one may be the problem. I know that I am sick of being sick. I have had it with pills and scans and tests and the endless medical expenses. Sometimes I like to make believe that I am healthy and strong and that I don’t have a huge crush on my nephrologist’s receptionist. It all seems so wrong.