More ups than downs

Dear Family and Friends,

A very busy day on Thursday. The SPIN instructor was very pleased with my progress. Now that both the rib and the thumb are much better, I can spin more effectively. Later, Merwin drove me to NCC for the writing group, and all who were there read, each of our writings different, each special in its own way. I got a thumbs-up, more or less, for my abstract, though the reaction also was negative, in a sense, because they like the romance of the myth I explode in the paper. Interesting. One thing I learned, however, is that a 2 -page paper is about all I can read without losing breath completely. There are five weeks to go before I read my full paper at Columbia, and I can hope to be better by then, but if not, I am going to ask a couple of friends to read parts for me. It'll be weird, but I think necessary.

Kathryn drove me from NCC right to the door in NYC, where Nick M. was waiting for me. He had trained in from DC to see As You Like It at BAM. I haven't mobilized myself yet to go to that. BAM's Harvey Theater is a little difficult for me now: steep stairs without railings. I'd have to ask for handicapped seating, the only area without stairs.

Nick spent a few hours with me, and we chatted about this and that: baby Alex, new baby coming, work, teaching, scholarship, writing, and all the rest. After he left, I had about an hour to rest before being picked up by Irene D. I was introducing her at an event for her new book. Naturally, it is an honor and a pleasure to do such introductions. While I was reading my script, Irene, in the first row of the audience, was murmuring, "How nice!" "How Sweet!" We two go back a long way. Soon after her talk, I left Irene happily signing books for the buyers and quietly left for Penn Station to catch a reasonably early train home. I was home by 10:30: not too bad, but a long eventful day.

I was somewhat dispirited by news I had received while Irene and I were waiting for her event to start. Dr. K phoned me and so did Merwin, who had spoken to Dr. Raza. The verdict was that I could not get into Dr. Raza's INCYTE trial at St. Vincent's CCC. Because my WBC is so high, about 100 x what it should be, I have to be on Hydrea, the chemo I have been on for years, and I cannot have that in my system when I am on the trial. Dr. K. can't take me off of the Hydrea or my WBC would shoot up even more. Dr. Raza is so kind, so loving, so interested in Shakespeare: I really am almost sadder about losing the opportunity to be with her than about the trial itself. She assured Merwin, though, that she will stand by me in all ways. But how? She isn't sure if St. Vincent's CCC, a freestanding facility, will be included in the disaster that has struck St. Vincent's Hospital, which has to close because of money problems.

She did suggest another trial, at Mount Sinai, under the direction of Dr. Silverman and both Dr. Raza and Dr. K. will email him and talk to him to try to get me into his trial. It's a JAK2 inhibitor trial (JAK2 is the bad gene I carry) and it's phase 2, so there is no placebo. This news of course is hopeful. So we'll see what happens.

A big day, giving me lots to think about, all of which I will share with you when I can. Now we are facing the possibility of a snow storm.

Love to all,
Bernice