The passage of time has become very strange for me. The days seem to drag by, but the weeks just zip past. I really can’t believe that two weeks have passed since my last update, and that only one more week of radiation and chemotherapy remains.
We have already finished up the main course of radiation, which irradiates a softball-sized area around the (removed) tumor, and entered the final “boost” phase which focuses on the area of the tumor. The last treatment is on February 2 — Groundhog Day! — and after that there will be no more radiation. Daily chemo ends on January 31, then after a month off will resume with a one-week-on, three-weeks-off cycle for about 6 months. That second round of chemo is supposed to be more tolerable than this initial, aggressive round of chemo and radiation, and we hope to be able to travel and otherwise resume something resembling normal life. If nothing else, the absence of daily radiation appointments will be a great relief.
Medically speaking, for Kate the last two weeks have been similar to the previous three. Her speech and motor issues are very much improved, to the extent that she now seems to have few problems speaking most of the time (though she says it’s harder than it looks). We have begun scaling the steroid dose back down, with a target of getting it down to zero for the coming month off of treatment. Side effects are somewhat worse, though — she is quite fatigued now, taking several naps per day and not able to walk more than a few blocks at a time. We are trying to get up and out every day, though, and the fatigue is not nearly as bad as what we’ve seen in friends taking intravenous chemo.
For myself, it’s been increasingly difficult. With our friends’ help I’m keeping up with everything that has to be done, but I’m tired and achy and often very sad. I’m also having some gut issues, about which the less said the better. I am working with a counselor and doing everything I can to relax, including yoga, guided visualization, and as much walking as I can manage. I have asked for, and am receiving, help from friends to get out of the house when I can. I believe that my stress levels will improve once we are done with this round of treatment, with its daily hospital visits and many pills which must be carefully managed.
We have had house guests nearly every day in the last two weeks. Janna cooked us a brisket, Mary Robinette made three pies, Allan helped us buy a recliner, Sue made sure I got to the gym, Brenda washed the kitchen floor, and all of them did much else besides. Each of them brings a special set of skills and energy and all are very much appreciated. This is in addition to the many local and non-local friends who provided transportation; helped me get out of the house to write, do yoga, or see a movie; sent or brought food; or just came by to hang out. We are so grateful to you all.
We had hoped to be able to attend Potlatch, but at this point this seems unwise due to the fact that some of the drugs make Kate more vulnerable to infections. Alas. On the brighter side, my story “Damage” was published at tor.com and is getting a lot of buzz and rave reviews. You can read it here: http://www.tor.com/damage-david-levine
Thank you very much for your love and support. With your help, we will get through this.