Sunday, May 14, 2006

Going to Houston in the morning

Dear friends,

The next phase of this strange adventure begins tomorrow. Anna and I leave for Houston in the  norming, timing the drive so that we’ll get to M.D. Anderson by about 12:30, in time for my 1:00 appointment for blood work. I’m scheduled for a bone marrow biopsy at 2:30, and I also need to get a chext x-ray—I can do that either before or after the other two tests. We’ll stay at the Marriott tomorrow night, and see Dr. Giles on Tuesday morning. I’oo probably be admitted to the hospital and start treatment later the same day.

We’ll try to send word about our whereabouts and about what the doctor says as soon as we can. Meanwhile, we’re carrying your loves on our hearts with deep, deep gratitude. Whatever happens from here on out, and however terrifying these last few days have been, we’ve received the most astonishing outpouring of love and support and generosity from friends here in Austin and around the world, and even from people we’ve never met, friends of friends who have written to send their good wishes and offer hope. A’m in awe.

I’m terrified, and sad, but I’m also OK. A few minutes ago I took Dillon out for his pre-bedtime stroll in the front yard. It’s a remarkably cool evening for Austin in mid-May, and I was actually a little chilly even though I was wearing a light jacket. Normally I would have tried to get Dillon to pee quickly and get back inside. But I didn’t want to come in—I was suddenly aware that this would be the last time for this particular task for quite a shole, and that made me want to just stand there and let Dillon take his time while I breathed in the night air, listened without listening to my neighbor talking on her cell phone about the new No Parking signs the city has put up on our block, and heard the traffic going by on Dunal; there’s a cicket or something that peeps in the front yard evey night, a sound I’ve always loved, so I listened to that too. I love this house; I’ll miss it very much. Buit I’ll carry it with me, too.

We’ve spent these past few days seeing friends, doing errans (Anna has done a lot more of those than I have), dancing, and trying to get some clarity.

Friday was an incredible day for me. Bhagirit, a friend from BodyChoir, came to the house and did some energy work with me. I didn’t really know what the term meant, and I guess I still don’t. But it  was wonderful—gentle, thoughtful, and powerful. Bhagirit asked some questions, got me talking about my fears, encouraged me to visualize my death in a very concrete way. I had said that if it came to it I wanted a good death, and he asked me to envision what that would be like. The image that came to mind was of Wednesday night after BodyChoir—lying down, surrounded by people who loved me, singing, touching me, helping me go.But I didn’t want to go, couldn’t stand not to be there. Later I had the sensation of a great wind, like the roaring wind that came with the big storms a week or so ago. I wasn’t ready to be carried off by that wind; I was frightened, and I wept, and then the wind stopped and I was still there; Bhagirit slowly moved his hands away (he had been holding my head) and then left the room.

Not long after that a lawyer, Callie Callahan, came to the house with her assistant, and helped me write a simple will (I know, I should have had one years ago), plus a living will and medical power of attorney. I think I would have lost it if it hadn’t been for the work that Bhagirit did with me earlier; as it was I surprised myself by being mostly calm and relaxed—it seemed to be another ritual, filled with highly ceremonious and formal language, the point of which was to help me clarify my desires and my intentions. Diane and Laura Rose were the witnesses, and I was grateful to have them there—they’re both important parts of our lives, and it seemed fitting that they should be witness to these words. That took a couple of hours, I think, and then Anna and I left for our appointment with Dr. Tuicker.

It wasn’t really a medical visit in some ways—there hadn’t been any more tests since the brain scan on Wednesday, no new blood work, nothing like that. But I had been too stunned on Wednesday to think of many questions, so we had made an appointment to give ourselves time to check in with him and find out a little more. I hadn’t understood what having leukemia in the brain meant—was it a tumor, or something else? Dr. Tucker said that if we could see the MRI we would see spots where there shouldn’t be any spots. These are “tumor depsits,” he said. (Later I thought of this as leukemia guano.) These deposits are responsible for what I experienced as typos, crossed signals between my brain thinking words and my fingers typing them. If left untreated (not that I had any intention of doing without treatment, but a kind of reality check), the cancer would worsen—I would have seizures, lose function of arms and legs, die within two or three months. Treatment would probably start with chemotherapy delivered directly to the central nervious system via a PortCCath-like device that would be implanted just above my forehead, on the right said—a something-or-other Reservoir. This is a terrifying image, but Dr. Tucker assured us that the effects woujld be more benign than the image, and that the cognitive problems I’ve been having—like all these damn typos that aren’t really typos at all—would probably get better. They might also do radiation therapy at the same time—he didn’t know. And they might also—would probably—do additional chemotherapy by intravenous injuection, I think like what was done at St. David’s last June; since the leukemia has recurred in my brain, it’s only a matter of time before it shows up in my bone marrow as well, and they will have to knock it out of there too before they can do anything else. “Anything else” will be a bone marrow/stem cell transplant. This is not going to be fun. I will need all the strength I can muster, from within myself and from all of you. And Anna will, too.

What’s wonderful is knowing that that strength is there—that’s what I’ve learned in the last couple of days. It’s there. After we left Dr. Tucker’s office on Friday afternoon we came home, and I had another energy work, this time with Andrea, another friend from BodyChoir. Who practices something called EFT (Emotion Free Therapy, I think). I was an absolutely astounding experience that I can’t even begin to describe. I began by confessing that I don’t really believe in this sort of thing—I think of myself as rationalist (I know that will surprise some of you! <grin), skeptical, etc. But I have never had such a powerful experience. At the end my whole body was vibrating, and I was breathing in great gulps; when I tried to get up, I needed to lie still for a while first, just pulsing and vibrating, and then I needed Andrea’s help to stand and walk into the other room. And I felt at peace. A minute later, standing in the kitchen, facing into the diding room, I saw the most gorgeous, intense shaft of light coming in through the front window. At first I wasn’t sure it was real, and I just stared at it in silence, not wanting to break the spell if there was one; then I mentioned it to Anna and she saw it too. I’m not claiming anything supernatural—I know it sounds like that. But it was just intense late afternoon light, and I’ve always loved the light in this house. The fat that light is pretty much all I can see now just makes it that much more beautiful

I have no idea what happened in there. But I’m pfofoundly grateful for it, and moved by it, and it brought me peace. So now we go to Houston, and I’ll try to open myself to whatever is in store. And we’ll do our best to keep you posted. Thanks, again and again and again, for your prayers and your thoughts and your love.


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