Dr. Raza's report: so now what?

The report from Dr. Raza at St. Vincent's CCC arrived late yesterday afternoon, too late to call my local hem. (hematologist to civilians), but I will be phoning her this a.m. when office hours start. It was a disappointment all over again to read that INCYTE (the trial drug) is a JAK2 inhibitor. JAK2 is the bad gene I developed some time during my life, relatively late it seems, probably from some sort of environmental insult. Merwin also has a Myeloproliferative Disorder (MPD for short), a blood condition something like mine, but not the JAK2 gene, and maybe that's why he does not have overt symptoms, only high platelets, kept in control by Hydroxyurea (HU), a mild chemotherapy, the same one I take. Evidently, from the report, being on HU is partly what is keeping me off the INCYTE trial--that and low platelets, down now to 56: I had to have a minimum of 100. So we'll see where we go on from here. I am hopeful that something good will happen to make me more energetic and give me happy working days.

Yesterday I went to the 7:45 class again, and stayed the whole time. But later I was a bit down in spirits and didn't find the usual pleasure I get from the various tasks awaiting me on my computer.

When Louise invited us to come to dinner and a movie with her and Paul, Merwin thought it would be a good idea; Being with people I like often energizes me. But it turned out that the feeling of collapse that happens when I get too tired started well before the movie, so we went home, and I went to bed.

But this morning, after a rather bad night, I woke up feeling fine at about 4:40 a.m. and was eager to try the 6:30 a.m. SPIN class. I did it! Got through the whole class. People were happy to see me after this long absence of about 7 weeks since I had tore my meniscus (right knee). With such welcoming greetings, it's easy to feel happy. I took it very easy, hardly worked up a sweat, but, forced to breathe deeply, I think I gave my lungs a good workout. Back home, I ate another square of spinach pie: good as ever.

And now for the rest of the day . . . .

Love to all,
Bernice