Upon reaching home I set up an appointment with the leading oncologist at Hoag Memorial Presbyterian Hospital in Newport Beach. He had been anticipating my arrival and had put off seeing me until my time in the care of the surgeon was over. He was and still is extremely busy and we agreed that his involvement prior to surgery would have been of limited use. Now however, he stepped into the breach and became my case manager for the remainder of my recovery.
I waited almost five weeks to begin chemotherapy. This was necessary since chemotherapy is a difficult treatment that attacks the whole body, tumor as well as non-tumor. I knew my health had to be good before undergoing chemotherapy, especially the kidneys and the liver. Given my experience with elevated levels of creatinine, tests were run to ensure my kidneys could handle the treatment.
My oncologist, Dr. Barth, consulted closely with Dr. Jaklitsch, who provided a recommended course of treatment indicating which drugs were to be given and at what strength and duration. Dr. Barth followed these recommendations precisely. BWH had suggested three to four courses of Cisplatinum and Gemzar given in the following manner: One dose of Cisplatinum and Gemzar (Gemcitabine) on week one, another dose of Gemzar on weeks two and three and a fourth week with no chemotherapy. This cycle was to be repeated three to four times if possible.
I knew from my reading that chemotherapy was only marginally effective in treating Mesothelioma and I also knew that the purpose of this treatment was strictly precautionary, to ensure that no tumors had survived the initial surgery and heated chemotherapy wash. I also knew that Cisplatinum was a powerful drug, one that often had serious side effects such as liver or kidney damage, nerve damage in the extremities and effects like Tinnitus, damage to the auditory nerves causing a ringing in the ears.
I began my treatments on my birthday, December 13th. Happy 52nd birthday. I didn’t see any candles, but later that night I began to lose interest in everything except my stomach. All I saw then was the bottom of the bathroom sink. I was SICK. I was sick for the first five days of the first week. I wound up making daily trips to the doctor’s office for infusions of saline solution to keep me hydrated. The anti-nausea pills I was given really didn’t do an adequate job but at least the nausea was only a problem during the Cisplatinum week.
My blood count was so depressed by the third week that we skipped the third round of Gemzar entirely. When my condition hadn’t improved enough by the beginning of the second cycle, I was given another two units of whole blood. The reduced red cell count was taking its toll on my stamina and left me slumped on the couch almost every day. The blood transfusion was intended to help these symptoms but I found it did little to help me feel better. I was also given blood boosting drugs intended to stimulate the production of red blood cells but even this didn’t entirely solve the problem and I continued to produce anemic cell count numbers in the blood tests they took.
Things settled down the second, third and off week but I noticed a screeching sound in my ears after the first cycle and by so by the beginning of the second cycle I began a course of steroids to help heal my ears. This didn’t solve the problem but made it tolerable. The second cycle, however, caused the Tinnitus to flare up even worse and this led to the decision that we would cut short the chemotherapy at two months out of fear that I would lose my hearing. The Tinnitus condition has persisted to this day and I have learned to live with it. I am still waiting for some form of cure that will give me back the silence that I was used to hearing in my head. As of the present day (June 2006), I still hear a high pitched sound all the time, day and night. When I had my ears tested, it was discovered that I had lost my hearing at the extreme upper end of the normal auditory range, but above the range of human speech. Since this didn’t affect my ability to communicate it was annoying but not disabling. There are just certain sounds that I can no longer hear. I told my wife that all domestic chore instructions are uttered in that frequency. I don’t think she believed me since I still have to do them.
I discovered during my initial stay in the hospital that I no longer enjoyed certain foods and found other foods repulsive. At that time, eating was an issue but not critical. By the time I was on chemotherapy it became a serious issue. I lost over thirty pounds in the two months of my therapy. I found that I had totally lost my appetite and that nothing appealed to me. This is apparently a common side effect of certain treatments like chemotherapy, major surgery and sometimes even radiation. I guess the taste of the food brought back unpleasant memories but it seemed to be more than that. The actual taste of the food was different and I found this quite disconcerting. It took more than a year to overcome some of these phobias and to eat normally again but in the interim I needed a strategy to be able to eat enough to fight my low blood counts and to keep my immune system strong.
One of the wonders of satellite television is the availability of channels like the food channel and the fine living channel. I found that watching cooking shows was an alternative approach to stimulating an appetite. Even if my sense of taste and smell was corrupted or suppressed by the chemotherapy, my eyes were still working and visual input was useful for creating a desire to eat. I recommend this highly for any patient suffering from appetite loss due to cancer treatments. It worked so well for me that I recently had to commit myself to dieting. I was becoming far too prosperous looking for a cancer survivor and I couldn’t afford to replace my entire wardrobe. Losing weight has become a priority but it’s a nice problem to have when I consider the alternatives.
