Ups and downs

Dear Friends and Family,

I have not written since Monday because we have been so busy.I won't fill in every detail but just the salient ones (more for myself than anyone else, so skip at will). In NYC, where we went Tues. night, I cannot add to the blog: haven't figured out how.

SPIN on Tues. at 6:30 a.m. was good; I pace myself shamelessly. The room is dark, each person is in his or her own world, and I just work as well as I can. I won't talk about my gym classes anymore unless something special happens because I plan to be at a class every day I am not in NYC. But at the MPD conference on Wed. I learned that weight loss in MPD is from loss of muscle, so I want to work to counteract that as much as possible. In NYC it's all the subway stairs that I depend on for exercise. Judging by my breathlessness, I think they give me a little workout.

We went to two doctors on Tues: the hand orthopedist, a real sweetheart, who pointed out the loss of muscle in my thumb. That's part of the reason I can't work it well; the pain is from arthritis. He didn't think it was tendinitis, and recommended that I not get the steroid shots that I wanted, though he was willing to do it. He wants me to see the PT he says is the very best person who works on hands--a miracle worker. And her office is on Glen Cove Ave. about a mile from my house.So I'll phone her tomorrow and see what she can do. I can make an injection appointment anytime, said the doctor. Anyway, that whole deal, with waiting, took a couple of hours, and we then had to rush over to the hem's office to talk things over with Dr. K. And wait a hour more. She and I both think the spleen may be a little smaller. But it turned out that my WBC had gone up to 161. She is not too concerned yet; wait and see; come in in two weeks for another test. If T&P do not work by the 12th week, it's no good and I have to stop.

After that we rushed into the City to be there to sleep so we could be there for the start of of MPD conference the next morning at 8 a.m. for breakfast (at the posh Athletic Club). After the train ride to NYC quite late, we decided to eat out at a new place, SalmonRiver, one of the restaurants closest to our building, which we have never tried before. A very nice dining room, quiet and reasonably well lit. It's in a hotel, so it was full of traveling types, both men and women, but mainly the former. I had a lovely Merlot, Nathanson's.

The conference the next day was amazingly educational, and it was good meeting so many others in this same boat, some of whom I had written to before through the MPD list. There were dosctors and researchers from all over the world, abot 7 of whom spoke to us about his (always his) recent research. I won't put here everything we learned, but the fact that sticks with me is that people in what I call the "end game" have about 1-2 years to live. I was rather pleased with that because a few months ago I felt so bad that I thought it might be months, not years. The signs are night sweats, enlarged spleen, weight loss, itching, fatigue, and fevers. The point is that I don't know for sure that this disease will be the end: I could get run over by a NYC bicyclist. These hard-working doctors and researchers could find a cure: they feel closer to one than ever, maybe two to four years away, maybe a breakthrough will come sooner. The point for me is, always, to live one day at a time and keep a smile on my face.

The peskiest thing is still this Little cough that limits my ability to talk on the phone, in spite of the teapot, the nasal spray the gargling, et al. It's the spleen, says my hem.

Anyway, we left the conference early because I was beat, and took we napped to get ready for Barbara Kingsolver at the NYPL across the street at 7 p.m. I don't usually plan two strenuous activities on one day, but this promised to be about an hour, and afterward all I had to do was cross the street and get to bed. She was terrific; enjoyed her very much. She spoke eloquently about her work, responding gracefully to every question her interviewer posed. It was mainly about her new novel, Lacunae, but she did range over the whole field of the process of writing. We came early to get good seats, and I had a good time with the woman seated to my left. She is re-learning Yiddish, and I know a little, and we were having fun with songs, phrases, and whatever we could remember. I thought, I'd like to see this person again, but then what's the point? I regret now that I had a defeatist attitude about it.

Merwin went to GH because he had important things to do early on Thurs. a.m. I went right to bed in NYC and went to the library the next day. I had a lot of fun. I enjoy so much learning things I have never known. I was working on a book by Falconer, a naval officer with, obviously, a bent for naval history and for Shakespeare. He explained a number of terms in the play that had been opaque to me, like 'card' and 'calendar': I had not thought of them as a sailor's lingo. I could go on about this, but in about a week if you're interested, you can find all of Falconer's notes by searching (Search HW) on the website hamletworks.org. And I also disposed of another volume of TLS, which Jay, the librarian at the NYPL, who works with the people in the two study rooms there, so kindly places on my shelf for me.

That's a lot to write and to read: now for making supper for my dear husband. Turkey meat loaf, baby Yukon potatoes, a little salad.

Love to all,
Bernice/Mom