Thursday, May 11, 2006

Bad news: the leukemia is back

Dear friends,
This is absolutely not what I wanted to be posting today. But here goes.

The leukemia is back; it has appeared in my central nervous system, as shown by a MRI scan of my brain yesterday (10 May). I don’t really know a lot more than that yet. Dr. Tucker called me with the news at about 5:00 PM yesterday. He said the MRI looked bad. He had already spoken to Dr. Francis Giles, a leukemia specialist at M.D. Anderson Cancer Center in Houston. I will go there for tests on Monday afternoon, and I’ll see Dr. Giles in the clinic on Tuesday morning at 9:00. Apparently they’re thinking of chemotherapy to get me back into remission; if that works, then I think the next thing would be a bone marrow transplant, but I’m not sure of that (or anything else, I guess). I’ll let you know more when I know more. I don’t know how long we’ll be in Houston; Dr. Tucker said yesterday to plan on staying “indefinitely.”

The reason I had the brain scan is that I noticed what seemed like a significant increase in the number and type of errors I made while typing; it just seemed that signals were getting crissed somehow between the words that formed in my mind and the words that came out through my figers. So I emailed Dr. Tucker about it (and added a whole lot of nice rational explanations about how I don’t like my keyboards, and how I can outtype my screen reader, and how the screen reader and PowerPoint don’t mesh as well as they should, etc., etc. He said to be on the safe side we should go ahead and do the MRI, so we did.

So here we go again. I’ve had a wonderful sinx months since the end of treatment. I’m grateful for your continued love and support and prayers and good wishes, and I’m sorry I didn’t write more over the past few months, when I have felt wonderful and healthy. Come visit us in Houston. Come early and often. WE’ll let you know where as soon as we have a better idea of what’s in store.

Anna and I went dancing last night. It was Wednesday, and  Wednesday is BodyChoir night, and I wanted to be out on the floor, moving and surrounded by people—good sweaty bodies!—and loud music. It waswonderful. I danced hard and felt free; at the end, during the closing circle, I shared my news, thanked everyone for their love, and told them I was (am) scared shitless. There was a great outpouring. Everyone gathered around me in the center of the big room; there was much laying-on of hands, and prayers in different languages from different traditions; I felt myself relaxing, felt the tension leave my body, at least for a while, and I’m very greatful for that.

At noon today I’m scheduled to participate in the keynote address for Knowbility’s AccessU conference here in Austin. I’ll go ahead and do that—I feel an urgency about getting the word out ome more time, to one more group of people, that accessibility matters. So I’ll go and say that, and then I’ll go for acupuncture (which is also good for stress), and I’ll go to the gym at 5:30 and work out, because I’m going to need all the strength I can muster.

That’s it for now.

Update, 10:30 PM:
Well, I did those things—did a “keynote conversation” with Gordon Montgomery at AccessU, talking mostly about WCAG 2.0 and the Last Call draft we published (just two weeks ago!?). I think it went well, and I enjoyed it. Gordon did a terrific job of prompting/guiding me through the topics we had discussed beforehand, and it felt like a good collaboration; I think the audience was engaged. Anna picked me up afterwards and took me out to the acupuncturist’s office up on Balcones, just north of 2222 That felt good. (It had nothing to do with leukema—I’ve been having sciatica problems for the past few weeks, and the acupuncture has helped a lot.) Then we drove home, and I tried to participate in a WCAG-related conference call, but I had failed to send out meeting instructions as I’d said I would, so naturally there weren’t many people there—just me and one other. Then it was time to feed Dillon and take him out before going to the gym. After workout out I came home and talked to Gim Allan for a few minutes about the class he’ll be teaching at AccessU tomorrow, which I had been scheduled to teach; and then Anna and I went out for a really nice dinner. And now we’re home again, and it’s bedtime. S good night to all and to all a good night.


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