Monday 10/24

I’m writing to you from the blahs of radiation land. I started Cyberknife treatment last Wednesday and it is so weird. Now I know what a Cyberknife machine looks like and how it moves. It is a smooth high tech beastie, sort of a cross between a tyrannosaurus and the Pixar animated desk lamp. It is articulated with several ball joints and moves almost continually throughout the 45 minute treatment session in it’s pre-programmed choreography. It seems to me both intelligent and blind. I’ve heard that other patients have named it but I have been unable to form a relationship with it. It is too alien and incomprehensible to me. For the past four treatments I have been lying on a table looking up at a blue circle with pinpoint lights that simulate constellations during the summer Solstice. I had trouble loading music onto the iPod shuffle I borrowed so I’ve ended up listening to a mix that includes ‘Fly me to the Moon’ by Frank Sinatra and other standards, some meditation music, and a recording of a lecture by Zadie Smith on mixed origins and the positive uses of equivocation that she gave during Obama’s presidential campaign. I don’t know how to get out of shuffle mode which has made for some odd shifts. I tried turning it off and closing my eyes to meditate but the whirring noise of the machine as it moved around made it too hard to resist peeking to see what it was up to. I don’t trust it. I wish I could and I know the doctors have done everything they know to prevent serious side effects. These potential side effects wouldn’t show up for a while and once the radiation is administered nothing can be done to take it back.

Going through this treatment has been emotionally tougher than I had expected it to be but its almost over. My last treatment is tomorrow followed by the welcome removal of these protective balloons and their dripping foley catheters. I went to see the surgeon last Monday because they were starting to show signs of infection, but luckily the signs and my elevated temperature subsided as mysteriously as they arose. He reassured me that they were not infected and also showed me the post surgery MRI showing no trace of tumor, just the two balloons. Very good news.

When I was afraid of infection I realized that I really did want the radiation treatment to be possible. Intellectually it troubled me to think of treating a radiation induced tumor with further radiation. It helps me to go through with the radiation knowing I was more afraid of not having it than than I am of being zapped by these incomprehensible potentially healing rays.

Thursday 10/27

It seems like every time I breathe a sigh of relief a new challenge arises. My last radiation treatment on Tuesday went smoothly. I took some extra pain medication in the morning because I worried that the tube removal would hurt but it was easier than I feared. Both balloons deflated well and the docs pulled them out quickly as I lay stoned on the table. Also, I finally got good news from the genetics counselors in the afternoon. All the test results were back and I don’t have Li Fraumeni syndrome, a rare genetic disorder that would make me more susceptible to many different kinds of cancer. This is especially good news because it is not just me but my family members who could have been affected.

By the time I got home in the late afternoon, I was very tired and that evening my temperature started to rise. Since then it has been wavering between 99 and 101 and when it is higher I feel very crummy. There are no oblivious signs of infection at the catheter sites, but I got a call from the doctors this morning and they have scheduled me for an MRI tomorrow to rule out the possibility of an abscess.  I so wish things could be easier for me. I’m taking lots of naps and watching lots of tv shows on my iPad. Its like hanging on to a little raft and waiting for better internal weather. It certainly looks beautiful outside my windows.