Tuesday, January 24, 2006
Life in Chemoville is improving daily. About 2½ weeks ago I went on half the dose of Xeloda (500 mg bid). About one week later the sores on my tongue had healed (aided by using a bicarbonate mouthwash which I got off the web). Although I have been aware of the problems brought on by oral mucositis and mouth sores for years as a researcher, I never fully appreciated the extent of the problem until I experienced it myself. It simply becomes totally undesirable to eat, and that’s not good. The next weekend Bob and I were at the beach and I was thrilled to find that my feet had healed to the point where I was again able to enjoy my beloved ocean with a long walk. My hands still remain extremely sensitive, but I can put up with that. I simply don’t do “buttons”, opening bottles, jars, etc. I made a big mistake one day and asked Bob to button my pants for me. A few hrs later I found myself in a ladies room and had to ask for help to unbutton them!! Along with these clear indications of reduced toxicity, my energy level is slowly returning to normal and we have been able to go back to the nautilus circuit at the YMCA this past week. So we’re going to see if I can stay on this for a while longer. To me, the concept of continuous chemo (metronomic) makes so much sense, rather than letting the cancer cells have a chance to catch their breath and recover. And indeed it’s now 5 weeks since my ascites was tapped and little to none has come back so far. So for the moment it’s onward to better times.
Saturday, January 07, 2006
With the philosophy that if this might be the last Christmas, it should be the best, we celebrated the holidays to the fullest. Friday night before Christmas we had dinner with Dorrie and Jeff before attending a lovely Christmas concert by the Washington Chorale in the new Strathmore Center. Then Christmas eve we served a dinner for various members of my research group, followed by dinner at our neighbor’s house on Christmas Day, and dinner and a sleigh ride through Frederick with my sister’s family the following day. Altogether it was a wonderful time of sharing joy with friends and family. Then reality struck with another chemo treatment on the 27th before Greg and Suzanne arrived with Max (6) and Alyson (4) the next day. The following morning our Playmotion couple headed for New York for their successful Times Square New Year’s Eve production and we headed to the beach with our young charges to share New Year’s Eve, as always with Dorrie and Jeff. All of us enjoyed playing games, doing puzzles, baking, etc with Alyson and Max and, best of all, just listening to their constant chatter. As we grow older, it’s easy to forget the beautifully innocent and unique perspective that children have on life.
Tempering all of this joy has been the development of serious toxicity to the continuous Xeloda (pro-5-FU) treatment. For the past two weeks I have had extremely sore hands and feet, seriously limiting my mobility and even making it difficult to make my hands and feet comfortable in bed at night. And now this week I have also developed sores on my tongue which have made it painful to eat. Add that to the fact that I am experiencing such overwhelming fatigue that I had to limit my working to 5-6 hrs a day this week, sleeping on average 11-12 hrs/day, and you can sense that I am not a happy camper. I am now on a two-day weekend hiatus from Xeloda to see if I can get back to a more energetic, less painful state. I get into long, unresolved arguments with myself regarding whether the (too) high levels of Xeloda are necessary to keep my ascites down (which they appear to be doing), or whether I would be just as well off with a lower dose with presumably reduced side-effects. To my way of thinking, I should be trying to get the biggest bang possible out of life while this disease remains in a relatively quiescent state (with the exception of the ascites problem which clearly shows activity), There will surely be more difficult times ahead. At present, my arch enemy Xeloda (my sister says that I should call it “FU”) is interfering with that approach.
Tempering all of this joy has been the development of serious toxicity to the continuous Xeloda (pro-5-FU) treatment. For the past two weeks I have had extremely sore hands and feet, seriously limiting my mobility and even making it difficult to make my hands and feet comfortable in bed at night. And now this week I have also developed sores on my tongue which have made it painful to eat. Add that to the fact that I am experiencing such overwhelming fatigue that I had to limit my working to 5-6 hrs a day this week, sleeping on average 11-12 hrs/day, and you can sense that I am not a happy camper. I am now on a two-day weekend hiatus from Xeloda to see if I can get back to a more energetic, less painful state. I get into long, unresolved arguments with myself regarding whether the (too) high levels of Xeloda are necessary to keep my ascites down (which they appear to be doing), or whether I would be just as well off with a lower dose with presumably reduced side-effects. To my way of thinking, I should be trying to get the biggest bang possible out of life while this disease remains in a relatively quiescent state (with the exception of the ascites problem which clearly shows activity), There will surely be more difficult times ahead. At present, my arch enemy Xeloda (my sister says that I should call it “FU”) is interfering with that approach.
