Tuesday, May 5, 2009

Back and Forth

Monday, we headed in for tests, tests and more tests in anticipation of starting a new clinical trial. On the way in, he had a pain crisis. We pulled over and administered morphine. This put Killian into an emotional nosedive because the source of the pain was his knee—new terror. Once tests were over, he had a long consultation with Dr. G. about the trial. He has been ambivalent about any chemo, and the conversation started in that context. After saying he believed there was cancer in his knee, he asked Dr. G. “what about what’s in my lung?” She said, “there’s a spot like this,” putting forefinger to thumb tip making the O.K. sign. I was thinking when I worked at Disney World we were told to never make this gesture—it means f___ you in Brazil or somewhere…. At this point, he said he wanted the drug, a Phase II antibody that seems like it might be promising for many sarcoma patients.

Today we did the two-hour drive into NYC to start the antibody (an IGF-R inhibitor). When we got there, Dr. G. said the scans done Monday revealed that some cancer had infiltrated his skull and was close enough to the brain to make him ineligible for the trial. We won't be looking at anymore trials now because this development pretty much universally disqualifies him for relevant trials.

I expected Killian to despair, rage, or at very least exhibit signs of depression. He didn’t even flinch. Not even a little. Almost casually, he asked if he could get some radiation on his arm so he could keep playing ukulele. Dr. G. said she would try to arrange him getting some this week. We’re already scheduled to be back in NYC Friday to consult with a pain guy about a nerve block to his arm.

We’re closer to a deal with the record company to get Killian’s music out to the world. We listened to a couple of songs today and I told Killian, “I’ve never recorded anything I felt was really finished. These songs are so good that I really can’t think of a single little thing I would change.” He took that in—along with the music and the moment, “yeah, it’s good….”


elizabethanne said...

sending love to you all. the spiottas

abby jenkins said...

My father-in-law battled mucosal cancer and won with the help of some amazing folks in Boston and a trial drug. They might be able to help you too. You can contact me through my site if you'd like more info.
Until then, in my prayers...