Saturday, May 26, 2007

A long Friday leading into a long weekend

Hi everyone:

Yesterday, Patty did not receive chemotherapy. After enduring a comedy of errors that lasted from 8:30 am until after noon, all without Patty receiving a single drop of Rituxan or Cytoxan (or even having an IV line put in place), we decided enough was enough and walked out. We have rescheduled her appointment for Tuesday, although Patty is seriously considering refusing the treatment until we get more answers about why it is still part of the plan (since it doesn't really seem to work and just renders Patty ill.)

I had a conversation with Dr. Costanzo while Patty slept yesterday afternoon. She said that she continues to feel disappointment that Patty did not get the heart that was a negative crossmatch, and shares our worry that we may wait a very long time before another such heart may become available. She did say, though, that she isn't especially concerned about Patty's atrial fibrillations; the sense I got was that the doctor feels they go with the territory with heart failure. She will be in touch with the transplant team at UCH to see if we can better nail down next steps for our patient; when we get their thoughts, I'll share them here.

Patty is not feeling well today, although this time we can't blame chemotherapy. She has seemed quite fatigued over the past couple of days, and has surprised me at moments with a sudden search for a missing breath. We visited with Jim and Trish next door for a while last night (and were well-fed in the process), and then went out to play a game of pool at Kickers. Tonight, we have Kathleen and our friends Kevin and Denise visiting.

Love,
Brian

P.S. We did manage to squeeze in a film here and there lately. The movie Venus, with Peter O'Toole, is exceptional, even if its characters behave in reprehensible ways at times. I was very impressed. The documentary Who Killed the Electric Car? was also compelling, if unsettling.

No comments: