So I'm back home in Binghamton today and the weather is terrific! So terrific, in fact, I am sitting out here in the sun with Di and posting to my blog. Actually, I'm sitting comfortably and supervising Diane. She's doing a great job, currently ridding the front porch of our yard of the ugly red gravel the former owners spread everywhere. It was an attempt at edging that the meth-addicted couple applied to all of their home improvement projects.
Ir's great to be here! At the beginning, I thought I'd have to stay in buffalo for two weeks., but as it runs out I can head up again Wednesday for more testing. On Monday, I have to get a special blood test at Br. Oncology, at the request of the RPCI doctors and nurses.
The tests this week are very important. What we hope is to see a significant decrease of the bad" cells in by blood called "blasts." These immature white blood cells, generally from leukemic bone marrow, can give a pretty good indication of how the disease is doing. On Friday I had a blast count of 75%. Monday it was 33%. What we are hoping is this new drug, Nelarabine, Will show a trend downwards.
If the nelarabine isn't working (we should know something by late next week) Dr Wang said I will go directly into the hospital as an inpatient. I would get high dose until I went into remission again, or the transplant team and donor would be ready.
So lets all cross our fingers and hope this fancy new drug works!
Meanwhile, it has at least had its side effects. I've been very sleepy. Not sure if this is due to the Nelarabine or the lovely Fentanyl patch that I have been given more my belly and back pain. I any case, the combination of those two drugs and the Dilaudid (an oral narcotic painkiller that I use for "breakthrough" pain) I find myself doing silly things. For example, I can be watching television, and just drift off quickly, not even knowing it. Apparently I make gestures at objects and people in the dream, and sometimes when I realize there is nothing or no one there, I wake up from my dream in a start! To boot, I even mumble incoherent mumblings that make total sense to me, but no sense at all to those listening.
By that measure, you should all be thankful this email is somewhat legible! I even spell most things correctly, given a spell-checker . . .
Other than that, today was great. Had breakfast with my parents and Diane at the Parkway Diner, and then Mom and Dad gave me their new laptop to set up. It's pretty sweet! Good enough to type this blog on anyway.
I'm at home for the next couple days, so feel free to drop by or give me a ring. Though I'm going to Roswell for that important test Wednesday, I can guarantee I'll be around today through Tuesday. After that, as I explained earlier, things are kind of up in the air after that.
Thanks again everyone for your continued support!
Sunday, May 06, 2007
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