I began my fifth of my seven-week treatment program with today's blood tests followed by radiation. The blood tests are needed to calculate my carboplatin dose for tomorrow's chemotherapy, based on my kidney function. The treatment is becoming pretty much a regular routine. Tuesdays, the days that I get chemo, have so far been pretty much of a disaster, schedule-wise. The first week was the worst, because my bloodwork was begun that same day and my chemo had to wait the two hours for the lab results in order to properly dosify my carboplatin. Since then, I get my blood drawn on Mondays so that the results are ready on Tuesday morning. However, until last week, my chemo wasn't done in time for my 11:00 a.m. radiation appointment, so I had to go down two floors to the underground radiation center pushing an IV pole and with a catheter running to my Power Port in my upper right chest. Last week Pierse, my medical oncology nurse, started my liter of saline more or less on time, and the anti-nausea drugs and my carboplatin were dripped in consecutively almost in time for me to make my radiation appointment. The week finished off joyfully, because one of our Hope Lodge family got to ring the gong in the Hopkins radiation suite signaling the end of her treatment. At eleven o'clock, a nurse had Ginny hold up one of her grandchildren to ring the gong eleven times to mark the hour when the armistice was signed. He began playing on a keyboard and singing "America The Beautiful." Not being shy to join others in song, I did so, and learned that the effects of the radiation on my larynx have ruined my voice, I hope temporarily.
Side effects of treatment are growing, principally open sores like canker sores on the left side of my tongue and in most of my throat, but concentrated on the left side because my radiation is targeted there to kill the cancer cells in the tumor on my left tonsil. My neck lymph nodules and the cancer in my nasopharanx (upper back of nasal cavity) are also getting irradiated, but I'm not sure what side effects that radiation is causing. The radiation to my upper neck lymph nodules might be contributing to the lessening of my saliva production and thickening of what saliva I do produce. That, coupled with the sores on my tongue that make moving food around in my mouth painful, make eating an increasingly slow and painful event. So far, I haven't resorted to the feeding tube in my stomach for nutrition or to pre-medicating with Oxycodone a half hour before meals so that I can chew and swallow with subdued pain. It's very important to keep swallowing food so that the muscles associated with swallowing don't atrophy; so far I'm handling the pain and "handicapped tongue." I don't want to become a swallowing cripple! Another side effect of reduced saliva production is increased susceptibility to tooth decay, so I began nightly applications of fluoride gel to my teeth in specially fitted "fluoride trays" two weeks before my treatment started to increase their decay resistance. I also brush immediately after every meal, and floss once a day. So far I've had no noticeable loss in sense of taste, but I have to stay away from tomato sauce, sweets and food with sugar, onions and food cooked with onions, and other acidic foods, because they get the nerves firing in my mouth sores. We'll see how long I can taste; my radiation oncologist said that I'd probably lose my sense of taste for a year.
Hope Lodge celebrated its 24th anniversary last Saturday, which was also Damaris' birthday. A good number of survivors who had been Hope Lodge beneficiaries came to the event. Damaris and I joined the festivities and chatted with a number of people who had gone through cancer treatment and are now considered cured. A very sad and touching exception was the mother of a former resident who hadn't won his battle with cancer. Kevin Minthorne Wolf, 1963-2001, occupied room number 216, which is also ours and named in honor of him. Kevin had aspirations of becoming an airplane pilot, and his family hung a mobile of small airplanes in the corner by a small frame with photos of him on the wall. We were asked by the Hope Lodge director if we would mind if Kevin's mother spent some time remembering her son in our room. Of course we agreed, and Mrs. Wolf had her half hour of solace with the small memorial and the room her son had occupied during his ultimately unsuccessful cancer treatment. Some of the current resident patients have been coming here periodically for years because they're receiving palliative care, one has had to have a leg amputated and remains hospitalized with little daily change according to his elderly caregiver wife who spends every day with him in the hospital, and another has had a brain tumor four eight years, has undergone five surgeries, three while remaining awake, and recently returned home without a definitive prognosis for cure or recommendations for further treatment. So I realize how lucky I am to have a prognosis of 90% chance of recovery with a well-established treatment protocol.
Our weekend ended on a joyful note with Raquel's visit on Sunday. She drove us down to Annapolis, where we enjoyed watching the Naval Academy Colgate 26's sailing in a steady breeze before we retreated to the Hard Bean Cafe for some coffee and a snack while Raquel showed Damaris how to access songs from iTunes on Damaris' birthday present, an Ipad 2. So now Damaris is a geek and I'm happy that her present from Tim, Steve, Raquel and me will keep her busy exploring its capabilities and all that's on the web for a long time.
