The trip into NYC wasn't a total disaster: Merwin and I had dinner last night at Szechuan Gourmet as planned — joined by granddaughter Michelle. I find that about 90 minutes is my max before fatigue sets in. So back the two of us went to the little apartment, wondering whether we would see workers on the scaffolding outside our windows, as we had when we arrived in the late afternoon, but they had long gone of course They had been very discreet, never glancing into our large 4th floor windows at us taking our afternoon naps on our bed/couch. We have a hugs blind, but love the view out of our window so much, day and especially night, we never use it. I wondered if we would see them again this morning, but we arose early enough to miss them, leaving the building at 9 a.m. for our 9:30 appointment. More subway adventures, but we don't need to hear about that now. It's all new to us, non-New-Yorkers that we are, and we enjoy the adventure.
At the hospital, after a wait, I had blood drawn, and after a much longer wait finally Edwidge came into the examining room I had been sent to (she is the P.T. who was to do the biopsy) unexpectedly accompanied by a serious-looking Dr. Raza. The bad news is that I cannot be in the phase 3 INCYTE trial, which is what I had been hoping. My platelets are too low and my white blood count is too high. She had thought that she could fudge a bit on the platelets, but they had gone down some more since the 1st visit and the INCYTE people running the trial are very strict. She will email us her report when she sends it to my own hematologist (“hem” for short), Dr. Kurzyna, in whose capable hands she is returning me for now.
Actually, she gave me three choices, but recommended the one that I will of course follow: thalidomide for 3 months to see if it works: it shrinks the spleen in about 30% of cases. Not such good odds. So I'll have more news about this tomorrow after I get a copy of her report. None of these treatments is more than palliative, of course, making life easier if not longer. But Dr. Raza thinks I am not near the bottom of the eventual slide. She thinks I can live, work, enjoy, and all the rest. If only I can overcome the fatigue, even a little; a smaller spleen, with less pressure on my lungs, would perhaps improve that situation.
Dr. Raza was happy to talk to me about Hamlet, which she loves. She reads all the major tragedies at least once a year. She loves Harold Bloom's work, and she knows him personally, because she has co-written a book called Epistemology and Literature (I think) with a Yale English professor. We promised to exchange books.
Nice to have a doc who loves Hamlet! Othello, though, is her favorite.
Fully exhausted with all the expectation and disappointments, we dashed off to Penn Station and home. Now it's nap time.
More tomorrow.
Love,
Bernice
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