It's amazing what happens to time when one spends an overnight anywhere away from home. It seems so much longer! Yesterday, we hurriedly did all the maneuvers required to get the thalidomide and prednisone (which are taken together) in time to take the 12:52 p.m. train to the City. The short story is that somehow I left the prednisone in our car at the station in Glen Head, so that when I had to take my 1st thalidomide at night in NYC, I went on a frantic search for the prednisone--in my bag, pockets, wherever I could think of. There are not many places to look in a 2 x 4 studio apartment. The upshot was that I didn't get my first double dose, and my hem wanted me to start ASAP. When we returned home today we found the prednisone in the car, thank goodness. So tonight, with some trepidation, I will start the new course of treatment. I am already on 1000 mg. of Hydroxyurea (HU); that and the other meds for this and that and the antihistamines I take for itching make me very tired. I don't think the blood condition itself causes the fatigue; it's all the cures! Well, we'll keep trucking, hoping that I'll be among the 30% who see some improvement with these new drugs. By the way, if you are interested, the price for thalidomide, off-list, is $4,700 per month ( believe: covered by Medicare. Wow! Of course, they are able to negotiate a very much lower price from the drug company.
When we got to the City, we had a nap as planned, then went to the library where I was able to use a database in the Allen Room (where I am lucky enough to have a shelf and privileges) and print out a brand new essay that I needed to see for an essay I am writing.
Then we packed up the playbill that Paula Glatzer had given me years ago--of the nineteenth-century actor Macready in his first appearance as Hamlet--and went two doors down to a FedEx office. We mailed it to the Folger Library, to which we are donating it. So thanks, Paula, because it's partly your donation too.
Then we got dressed for our lovely dinner at Koi, the elegant restaurant in the hotel next door. As we pass by their door now and then we notice all the handsome people waiting in a line to get in. No one questioned our admittance because we had a reservation for the 6 of us, and a good time was had by all. I remained wide awake and cheerful throughout.
Finally the night, but I won't write about that. The usual miserable very few hours of sleep. Why does fatigue go with sleeplessness?
But this morning I was ready again to face the day. Harvey treated us to breakfast at Au Bon Pain, then he Merwin went to the Met to see some exhibits, and I went to the NYPL to do some work. Finally home again and supper at home--some of that spinach pie from the freezer. Actually I think it is better frozen and reheated than it was straight out of the oven. Less salty. We had to test its freezer-staying power because I am going to make one of these for our Thanksgiving weekend in Connecticut.
More tomorrow: I hope I have nothing to report about the overt effects of "T & P" as I will call them.
Love to all,
Bernice
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