Tuesday, May 23, 2006

Treatment begins

Hi, all. Sorry it’s been so long since I’ve written—there’s been a lot going on. I’ll try to summarize, then fill in details later if there’s time.

First, treatment has begun. So far I’ve had two doses of “intrathecal” chemotherapy instilled directly into my spinal fluid via lumbar puncture (otherwise known as spinal tap). Apparently this has already started to work, reducing the percentage of blast cells in the spinal fluid; but Dr. Giles says he’s only interested in seeing that figure reach zero. I’m due for another lumbar puncture/ dose of intrathecal chemo on Thursday afternoon.

I’ve also had two doeses of radiation therapy, one yesterday afternoon and one today. This will happen again each day this week, and the last radiation treatment will be on June 7 (two weeks from tomorrow, I think).

They can’t say for certain how many more doeses of chemo I’ll need to clear up the leukemia in the spinal fluid, but it’s possible that that phase will finish up about the same time as the radiation therapy. After that there will be a round of heavy “systemic” chemo that will likely consist of two different drugs delivered over a five-day period—different drugs on different days. Dr. Giles said today that this could be done on an outpatient basis, and it’s possible that we could do it in Austin! So we might actually be coming home in a few weeks, to do the chemo, recover, and prepare for the bone marrow transplant.

This is the point of the treatment I’m receiving now, according to what Dr. Giles said today. We don’t have a date for the transplant yet—there are a lot of things that have to happen first, and in fact there seems to be some disagreement between Dr. Giles (leukemia) and Dr. Anderssen (transplant) about the criteria for deciding when the process should begin. They hadn’t actually spoken to each other about this as of this morning, so I’m sure there will be discussion between them and with us.  In the meantime, they’re testing my brother Peter’s blood sample to determine whether he’s a donor. They’ve also done a preliminary search of the worldwide donor registry, which turned up 64 potential matches—a number with which both Dr. Anderssen and Dr. Giles seemed extremely happy.  (Thanks to Vicki Almstrum  for organizing a donor registration drive at Wheatsville Coop in Austin on Thursday evening—a few cells from your cheek may help to save a life, whether mine or someone else’s!)

And here’s some other news: We get to come home to Austin this weekend!! I’m scuedled for radiation therapy on Friday morning, followed by a session with the radiologist, Dr. Dabaja; and then we’re free till Tuesday morning! So we’ll check out of the hotel, stuff our stuff back into the car, and head for home, then come back here either late on Monday or (if we can make the schedule work) early on Tuesday. Please stop by and see us if you get a chance—I’ll be resting a lot, but we’ll love to see you!

We’ve had several visitors already, and it’s been a great boost to our spirits. Last Frieday we saw Mariana Adler and Ric Berman, who’d been teaching at the Psychoanalytic Institute and stopped by the hotel on their way to an Institute dinner. On Sunday afternoon we had a lovely lunch with the Rossmans—Chuck and Marcela, Jessica and Joe, and Lucho. And today Sharron Rush and Glenda Sims came, though we didn’t get to see them till about 2:00, since Dr.  Giles was running late this morning and that meant radiation treatment started and ended late, too. It was lovely to see everyone!

Another part of my good fortune is that Mason was here all weekend—he caught the red-eye from San Fransisco on Thursday night, and arrived on Friday morning just in time to go with us to the planning session for the radiation treatment. It was great to have him here—he’s a beautiful presence. I’m  incredibly lucky to have him and Ledia in my life. They’re wonderful, creative, open-hearted, generous people, and I’m a proud and happy stepfather.

I’ve been learning all over again just how lucky I am. Anna has been with me for every millimeter of this terrifying, strange, and sometimes beautiful journey, using every bit of her incredible energy to guide me and protect me and make me strong. She’s strong and fierce on my behalf , and loving, and warm and generous to everyone we meed—other patients and their families, hospital and hotel staff, frends, everyone. What an amazing, beautiful woman she is. Anna, I love you.

I’m going to stop now. It’s late, and I’d  better go to bed. I’ve gotten some wonderful, moving, loving emails and phone calls from lots of people- close friends, people I’ve known just about my entire life, people I’ve just met, people I don’t even know. They make me laugh, they make me cry, they make me strong. You all do. Thank you so much.


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