Wednesday, June 07, 2006

End of radiation treatments today!

Where to begin… I had my last radiation treatment this morning! And they gave us the mask to take home as a souvenir of sorts… Anna says it’s very cool; we’ll have to have a “face-painting” party to decorate it properly, then hang it on the wall. It’s an ancient tradition, and in some strange way I relish having the mask. One of my personae, I guess, except that the ancient Greek personae were masks that amplified (and stylized) the actors’ facial expressions and their voices, so that they could be seen and heard from the upper reaches of the amphitheatres, and this mask held my mouth shut tight so that I couldn’t utter more than muffled grants while I was wearing it. (Fortunately, I never had to wear it for more than a couple of minutes—the treatment itself lasted only a minute or so, two 20-second bursts separated by a similar interval while the x-ray machine was repositioned to irradiate the “other side” of my brain.) Anyway, the radiation treatments are done with. It will be several weeks before there’s another MRI to survey the results: apparently it takes a while for the full effect of the radiation to become manifest, and the chemotherapy that will begin next week in Austin may also cause an inflammation that should be allowed to subside before the next image, so as not to cloud the picture unnecessarily.

I had another lumbar puncture yesterday (results not back yet), performed by Sue, the artist, who did it again quickly and without pain. And not just without physical pain: she also smoothed the bureaucractic path this time, so that we got finished hours earlier than we might have done otherwise.

I’d been scheduled for a massage at 12:30 yesterday. It was wonderful; he found and released trigger points all over my back and down my right leg. I could have stayed all day, but I only had a 30-minute slot, and there was that spinal tap waiting… From the Place of Wellness (a separate building for massage, acupuncture, yoga classes, Nia, meditation, etc.) we went to the Transfusion Center on the second floor (Elevator A, for those of you who are keeping score), where we found out that it didn’t matter that we were 15 minutes late—they were running at least 45 minutes behind at that point. At 2:30 they still hadn’t called me; Anna was out in the hall where her cell phone worked, and I was sitting, trying not to listen to the soap opera that was playing on the TV (at least it wasn’t Fox News; I should remember to be grateful for small things…). And suddenly Sue appeared. She had found a room up on the 8th floor where she could do the procedure, had checked with the powers that be and gotten the green light. Anna came back in at that point and all four of us—me, Anna, Sue, and Dillon, who had just merged with the waiting room carpet and really didn’t want to go anywhere—hustled off to the elevator (I think the new room was between Elevators A and B). I took my Ativan, Sue administered the numbing cream, and I lay hown on the bed to let things take effect. Sue came back an hour later, I assumed the position, and she was done in about 10 minutes. Not even a twinge of pain. She rubbed my back a little to ease the tension—I had been holding myself tight against the pain that hadn’t come—then helped me lie down on my back. She could have left then, but instead she stayed a while longer, printed out some of the data from the first lumbar puncture—was that only three weeks ago? It feels like centuries—and explained some of the terms to Anna. I’m so grateful to her for her kindness and her virtuosity. And she treats everyone with the same thoughtfulness and generosity. While I was lying there I heard her talking to someone out in the hall—the wife of another patient, I think. There was some confusion about when the man should have his lumbar puncture; they had driven in from somewhere, but the man wasn’t feeling well. Sue said simply that it didn’t matter—whenever he was ready for it, she would do it, no matter what the schedule said. Her name is Sue Kaled.

We’ve had some visitors, too, which has been wonderful and restorative. Judith Sokolow and her husband, George Lasalle, came on Friday and stayed till Saturday afternoon. They’re old friends—in fact Judth and Anna were housemates at Sarah Lawrence in their college days, and I met Judith the same night I met Anna, at Bill Nemir’s Christmas party on December 17, 1982, in his old apartment on Tom Green, a block and a half from where Anna and I live now. It was a great visit, like being with family. We had dinner at an Italian place called Prego, which Judth had told me about at the Cartons’ house in mid-May, before we left for Houston. I had remembered the recommendation, but hadn’t remembered that they knew the place because one of the owners had been a good friend of Judith’s daughter, when she and her husband lived in Houston with their new baby. (The new baby is now 14 and has three siblings; the family is about to move from Paris, where they’ve been for the past several years, to Moscow.)

On Saturday morning we went to the Houston Museum of Fine Arts and saw a fantastic exhibit. We were acting on a tip from Dana Fries-Hansen, director of the Austin Museum of Art, that we should take advantage of the reciprocity agreements between AMOA and HMFA to attend the opening of “The Architecture of the Quilt: The Quilters of Gees Bend.” Gees Bend (not sure I’m spelling it right) is a tiny town deep in rural Alabama, apparently not too far from Selma though probably in a different world. The women of Gees Bend have been quilting together for a hundred years or more, and have developed a style that’s uniquely theirs. Anna said the quilts reminded her of Navajo or Mexican blankts—highly geometrical patterns and rich, subtle colors. The quilts are made mostly from found or salvaged materials—corduroys, denims, camouflage—that the women could get their hands on. Some of them supported themselves as seamstresses—making fatigue jackets for the Army, pillow coverings for Sears, Robuch, etc. (the work for Sears resulted in an entire room of quilts in Avocado Green and Harvest Gold—yes, the stuff that was in my apartment in college, and probably yours too).

I was sitting on a bench in the middle of one of the rooms, listening to a video about the quilters. The acoustics in the room weren’t very good—lots of echoes—and I was straining to hear what they were saying. I was annoyed by noisy voices coming from the next room, frowning, wishing they would just shut up—and then Anna said, with wonder in her voice, “They’re here! The quilters are here!” and in they came, complete with curator and docents who were getting a tour so that they’d be able to explain the show to patrons later. Apparently there were two busloads of them—beautiful African-American women with strong, pleasant voices. They were sitting near their work, and they were happy to talk about it. We talked for a long time to a quilter named Essie B. Petway, who explained that while many of them are named Petway they aren’t all related to each other—Petway had been the slaveowner’s name, and had been taken by many of the slaves when they were freed. I asked her to tell me about the quilt she had made. She said it showed the structure of a lawyer’s office, using gras and blacks. What she didn’t say, as Anna told me later, was the the office was the office of the Freedom Project. She hadn’t quite been able to get the exact clors she’d wanted, but the quilt was OK just the same, she said. She told, also, of driving to work with a younger friend who apparently never looked at the landscape they were moving through. Essie said to her, “Girl, don’t you never look at God’s creation?” and showed her the changing colors in the sky. She said she wanted to make a quilt out of that. Her friend, when she finally noticed, told Essie that she should be a painter, but Essie said she could never mix paints like that—she could do better with fabrics, even though the colors were never quite right.

The curator invited several of the women to speak about their work. One of them was 88 years old, with a high, strong voice; I couldn’t really hear what she said. Another woman talked about quilting for a minute and then broke into prayer; suddenly there was a call-and-response, voices from all over the room. It was splendid, just splendid; what an honor to have been able to be there.

Shortly after we got back to the hotel, Peg Syverson drove in from Austin, and all of us went out for Thai food at a place called Nitnoy’s (no idea if that’s the correct spelling, but if you’re in Houston and in the mood for Thai food, find it—it’s in Rice Village). Then George  and Judith left to drive back to Austin, and Peg and I talked up a storm, munching on grapes that she had brought from Austin, having a great time, though both of us worried about the implications of the news that Sheldon Ekland-Olson, the Provost, will be “leaving his post” at the end of the summer. I’ve known Sheldon and worked with him for a long time We met in 1988 while riding adjacent exercise bikes at Crenshaw’s Gym; he was about to start a three-year stint in the UT System Chancellor’s Office. He returned to campus as Associate Dean of Liberal Arts during a very tense time in the English Department (the Rhetoric Division didn’t exist yet). He challenged me to think hard, programmatically and systematically, about what was then the Computer Research Lab (now the Computer Writing and Research Lab); he pushed me to develop a plan for growth and development, and to put dollar amounts to what I envisioned. He paid attention to those numbers, too, and called me to account for them. And he provided support, so that we were able to grow gradually from one classroom equipped with aging, donated IBM PCs to five classrooms; the CWRL has been going for 20 years now, as I realized to my amazement while talking with Peg, and it’s been ten years since then-Provost Mark Yudof gave me the challenge of launching the Institute for Technology and Learning. Later, Sheldon helped us reorganize as the Accessibility Institute, taking advantage of the unique work we were doing with groups on and off campus and allowing us to focus all our energies on accessibility issues.

Bill Nemir spent a couple of hours with us late yesterday afternoon and early evening. He’d been in Houston on business, and came by the hotel for a drink before going to the airport to fly back to Austin. It was a great conversation, a great visit. And tonight Ted Smith treated us to a wonderful dinner at Ousie’s Table, a terrific place that we used to go to with Anna’s parents, and where Ted remembered having had a fantastic meal 20 years ago (when the restaurant was in a different location). The food was great, and the conversation was, too. We have to make sure to keep these beautiful, intimate occasions going when all this medical foofaraw is over—spending time with people you care about is the point!

Tomorrow we se Dr. Giles. We’ll get the results from yesterday’s lumbar puncture. But we’ll also explore the continuing difference of opinion between him and Dr. Anderssen (the transplant doctor) about when to schedule the bone marrow transplant. My understanding is that Dr. Giles favors a very aggressive timeline, while Dr. Anderssen advocates a more conservative approach—he wants to meet with us again “the first day of fall,” as he put it last week, so that there’s time to establish that I really am in remission before proceeding with the transplant. I have to be in remission in order for the transplant to succeed. But a complicating factor is that apparently the bone marrow transplant won’t really affect the central nervous system or the brain, where the leukemia recurred—they really are two separate systems, although they’re close enough so that some leukemic cells may have “leaked” back over into the bone marrow, though there’s no evidence yet that that’s happened. So I’m not sure I understand what will count as evidence that I’m in a “second remission,” i.e., that the leukemia in my spinal fluid and my brain has gone into remission; and I’m not sure how that’s related to whether my bone marrow is considered to be in remission—as far as I know, there’s been no detectable leukemia in the bone marrow since the induction round last July. So we have a lot of questions to ask, and we’ll have some hard decisions to make. But we don’t have to make those decisions tomorrow, and don’t intend to. We need to learn a lot and talk to a lot of people, and then participate with the doctors in making the best decision we can.

When we leave Dr. Giles’ office tomorrow, assuming that no further lumbar punctures are needed, we’ll get in the car and drive to Austin. I can’t wait to get home. We’re both looking forward (an understatement!) to seeing you—please call or come by!—and we’re looking forward, too, to the arrival of two of my best friends from college, Ken Portnoy and Phil Cherner. (They were both at our wedding, so some of the people reading this have met them at least once!)

One more thing, and I’ll call it a night. Anna went over to Central Market yesterday for the first time, and the staff there gave her the cards from all the people who contributed to the John Slatin Family Fund that Sharron Rush so wonderfully set up in our name. We’ve been saving that for later, for the time when we’ll really be living here—whenever that turns out to be. But we had no idea how many people had contributed, and were (and are) absolutely stunned by how generous you’ve been. I’m so sorry we haven’t acknowledged your gifts individually (and a lot sooner). We’ve not been very good about things like that, or returning phone calls, or responding to emails. Somehow the world shrinks, and time gets amazingly short—no matter how many or how few things are scheduled, everything at M.D. Anderson takes all day, and phone calls don’t get made and emails don’t get sent. So please know that we love you and that we’re very grateful, and that we’re  very, very grateful.

More soon.


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