Tuesday, May 30, 2006

The madding crowd

The Fast Track Leukemia Lab was more like a parking lot this morning. We got there at 8:45 so I could have a blood draw and then get down to the Radiation Treamtent Center in time for my 9:15 treatment, which would in theory end in time for us to get from Elevator G in the basement over to Elevator A on the 8th floor for my appointment with Dr. Giles. But the waiting area in the Fast Track Lab was a seething mass of humanity—patients at different stages of treatment; caregivers and family members; MD Anderson staff, including a young woman, Dana, who came to sign me up for an epidemiological study looking for possible patterns in lifestyle or nutrition among Texas patients with leukemia. The woman at the front desk was masterful, a joy to listen to. She had a voice that could shake buildings, and did—she’d stand up and bet out a few neams with unmistakable clarity and force, then holler “Come on down!” as if calling the faithful to move down to the altar to testify. At one point I heard her say, “And I can do the next 200 names just like this!” and she proved it. It could have felt like cattle call but didn’t. There was something about the warmth in her voice and the way she greeted each supplicant who came to the front, even in the way she called out the names, that madeit seem like an act of love. This is the way to start your day, start your day, start your day… Amazingly little grumbling among the assembled multitudes; everyone knew their turn would come eventually, and that they would eventually get to their next appointmenmt, no matter what time it had been scheduled for. After maybe an hour and a half it was my turn; the techs and patients in the lab all called out “Good mornin’, Dillon!” as we sat down, and about 90 seconds later I was done and on my way back out to Anna in the hall just outside the lab.

We threaded our way back through the crowd—all the people whose regular Monday appointments had been pushed back to Tuesday because of the Memorial Day holidy, plus all the people with Tuesday appoints—and took the elevator down to the third floor for the trek to Elevator G. For some reason the third-floor corridors are much less crowded than the first and second floors, so we’ve learned to use that for asmuch of the journey as possible. But Elevator G, which goes to the Radiation Treamtnt Center, doen’t go as high as 3, so we took Elevator E down to 1, maneuvered our way to Elevator G (for some reason getting to F means you’ve gone too far) and checked in at the Radiation Treatment desk. From there we had take the elevator down again, to the basement where the big radiation machines are, and make our way through another maze of hallways to Waiting Area F. We were over an hour late  by that point, so of course we had to wait a bit, but it was nothing compared to the waiting upstairs in Fast Track. The student nurse, Sally, came to get me in a little while; I left Dillon and my various belongings (Bookport audio reader, general-purpose shoulder bag, hat) with Anna and went off on Sally’s arm. I lay don on the table, fitted my neck and head into the guides on the table, and raised me knees a little so Sally could slide a bolster underneath them for support. She and Thomas came them and fitted my mask thightly over my face (which has to be tilted upwards just a little, so the chin points forward; not sure why) and clamped it down. When they were sure my head was properly positioned, they went into the tech room (probably behind a whole lot of lead and other shielding). They did two “zaps” (There must be a technical term for this), each one soundling bit like a high speed printer, and that was that. They came out from behind their shield, unclamped the mask and raised it from my face, and gently helped me sit up. Then Sally handed me back my ID card (actually she tucked it into my shirt pocket while I was sitting up) and led me back to Anna and Dillon in the waiting area. Total elapsed time: about 7 minutes.

We agreed that the idea of getting a leisurely or decent lunch was now officially nil, so we stapped at the 24/7 Café on the first floor and Anna bought me a turkey sandwich, a yogurt parfait (Don’t do it!), and a bottle of water. I started in on the parfait and she took Dillon outside to pee—poor puppy, he had a cortisone shot last Thursday to relieve his terrible allergies (he was licking himself raw in some spots), and it’s made him want to drink a lot more water and pee a lot more than usual. When she cam back in we got back on Elevator A and went  back up to the 8th floor, where the Leukemia Clinic is. By now it was 11:30, and our appointment with Dr. Giles had been for 10:45. No worries, though—they hadn’t even missed us. I think we got into the examining room about 12:00, and were amazed to think we might actually finish here in time to get to the final thing of the day, the lumbar puncture, on schedule at 1:30.

We had written down some questions on the form we fill out every week—are we still on tack to have the round of systemic chemo at home in Austin? How many more lumbar punctures/intrathecal chemo treatments will there be? When might there be another MRI to see the effects of the radiation treatment? When might the bone marrow process start? Mary Alma came in first and talked us through some of thesem and a few other questions we had about whether I should or could continue with the supplements I’d been taking since leaving the hospital last July (she wants to check the ingredients in Macro-force, but basically thinks there’s no problem for now). She confirmed that we could probably plan on going home next Thursday or Friday (the 8th or 9th), and suggested that we set up an appointment to see Dr. Tucker on Friday, with an eye to starting the chemo the following Monday. (Anna called to set that in motion.) Then Dr. Giles came in. As usual, he didn’t sit down. He’d heard from Mary Alma that I’d been to the gym and danced at Bodychoir-. He seemed both pleased and surprised that I’d been able to do those things—he’s somewhat mystified that I’m relatively asymptomatic, given what the MRI showed in my brain and the high percentage of blast cells in my spinal fluid when they did the first puncture. The results of the most recent puncture (last Thursday) were clearly “vastly improved” and going in the right direction; I’ll have another puncture and chemo does on Friday, and if that’s clear we’ll stop. He said he would want to wait to do the next MRI till after the systemic chemo I’ll have in Austin—that is, until after I’ve had several weeks to recover from the chemo. By this point any inflammation in the brain due either to the radiation or the heavy dose of chemo should have subsided, and if the scan shows significant reduction in the tumors (apparently it taks quite some time for them to melt away completely), he’ll feel he has a stronger case to make for doing the bone marrow transplant as soon as possible; he is preparing to marshall his evidence for presenting to the transplant group. I’m fascinated, and wish he were talking about someone else’s brain and someone else’s transplant. So it’ll be a minimum of 6 or 7 weeks before they do another MRI, I think, and then I would imagine it would be several more weeks, maybe even a month or more, before the transplant could begin. Sounds like maybe September. Maybe Dr. Anderssen was right when he said last week that he’d see me again on “first first day of Fall.”

Dr. Giles left, and Anna and I gathered our stuff and headed down to the Transfusion Unit near Elevator A on the second floor, where I’d had all the lumbar punctures so far. Not a good place to stop and smell the coffee—it’s badly burnt, unfortunately inescapable. They were so swamped that they gave us a change of venue—we went back upstairs, this time to the Ambulatory Treatment Center on the 10th floor, new territory for us. They got us into a room in just a few minutes—bigger, incer, more comfortable thean the ones downstairs. I took a cople of Ativan to relax my muscles and ease my pre-puncture anxiety (which was considerable because the two previous punctures had been exhausting, difficult, and painful). A nurse came in and rubbed some numbing cream on the appropriate spot on my back and put a patch of some sort over it to hold it there while I rested on my back and waited for the magic to work. I listed to PD Janes’ The Lighthouse and dozed off, waking intermittently when a nurse came in to offer blankets or orange juice. At 3:00 Sue came in to do the actual procedure. The woman is an artist. It was she who had done my first lumbar puncture, and while I hadn’t actually enjoyed it I hadn’t found it difficult or painful, either. And I had assumed they would all be like that. But I was wrong. The next two LPs were performed by people who are very good at what they do, but for some reason there was trouble finding the right spot, and each time the person who started the procedure had to call someone else in to finish it. It was frustrating and painful for me, and excruciating for Anna, who was with me the whole time and doing everything she could think of to ease my discomfort and make sure it didn’t happen again. Which brings us back to Sue, for whom we had begged and pleaded. I don’t know what Sue does that’s different from what the others do. But the results are worlds apart: I felt a little bit of pressure, a tiny, rief prick of pain that was gone before I could even say “Ouch,” and she was saying “All done—she had drawn the fluid she needed, instilled the chemo, and what I was feeling now was just the application of a bandaid over the spot she had used. We expressed our amazement. Sue said she “just listened” to each patient to “feel the pattern” that is unique to each one. When you find the pattern, she said, you know exactly what spot you need to go to with your needle, and it’s not hard at all. I wonder how you teach that, or if you can teach it. (I once met an antique dealer on Cape Cod who said she could teach me to feel the differences in fine china; and John Gardner’s Tiger graphics produces tactile maps at a resultion of 1/32 of an inch, a fineness of touch I don’t have…) When Sue left the room and I lay down to rest on my back for anhour (to give the chemo time to circulate), I wept—with frustration over the two previous episodes and with great relief and gratitude the  ease and grace of this one.
So here’s to Sue.

We picked up some granola and fruit, etc., so we can have breakfast in the room tomorrow morning. And then we came back here. Anna’s resting in the bedroom, and I’m on the couch here, writing this. Trying again to leave the typos and mistakes—they’re not exactly scientific evidence for what’s going on in my brain, but there are so few other symptoms that maybe they’ll be of some use. I can’t tell, subjectively speaking, whether they’ve started to diminish or not. But maybe I’ll be able to do some counting, see some patterns or trends.

At any rate, it’s time to stop. I’m going to take Dillon outside one more time, and then  we can all go to bed. Radiation treatment again in the morning—9:15.

More soon. Love to all of you.

Monday, May 29, 2006

Back in Houston

Hello, everyone. It’s Monday night, and I’m about to go to bed. But I wanted to send a quick note to say we’ve arrived back in Houston, where my treatments will resume tomorrow: radiation treatment at 9:15, Dr. Giles at 10:45, lumbar puncture and intrathecal chemo at 1:30.

It was a truly wonderful weekend. Thanks so much to everyone who called, came by to see us at home, brought food, or danced with us at Bodychoir yesterday morning (all of the above, in some cases!).  I’m only sorry there wasn’t time to see everyone we wanted to see.

Off to bed now. I’ll try to do a real update tomorrow.

Friday, May 26, 2006

Home for the weekend

Dear friends,

Just a very quick note to say that Anna and Dillon and I are home in Austin for the weekend, and on the way home we got some good though not definitive news: Mary Alma, Dr. Gies’ PA, called to tell us that there were no visible leukemia cells in my spinal fluid! (That doesn’t there are none; just must means that aren’t visible if they’re there, and there will have to be ome or more additional lumbar punctures with the same results before they’re willing to say more.) It’s even possible that the nausea and vomiting I experienced last night—which interrupted a lovely dinner with Jim Thatcher and Diana Seidel, who then helped get me to the emergency center—may by signs that the radiation therapy is working to melt away the tumors in my brain. This reminds me of the morning back in the fall when I called Dr. Tucker at 7:00 AM to tell him that I’d just spent a night of agonizing backpai,, to which he said, “That’s probably good news—it means your bone marrow is producing white cells.” And it was true—my white count went up over 1,000 points overnight.)

It’s overhemlingly beautiful to be at home, even for just a few days. I got to feed Dillon and take him outside for his post-supper bathroom run. The thermometer in the car said it as 100 degrees Fahrenheit as we came around the corder onto E. 35th Street. That’s ridiculously hot for May (or any other time, for that matter) bit I’m not complaining.

Peg Syverson just came over, bearing dinner; so I’m going to close this now.

I love you. Thanks so much four your love and support in all their various forms.


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.

Thursday, May 18, 2006

Emerging picture

Well, friends, the piecture is starting to emerge and it isn’t especially pretty. Swa the radiologist, Dr. Dajaba, this afternoon. She said the MRI from Tuesday night snows multiple spots in the interior of my brain—not the protective outer coating (the meninges, if I understood correctly(, but rather in the interior; she said to imagine them like raisins inside a raisin bagel. The biggest one is 2 centimeteres long, a bit less than an inch. The others are smaller, just a few millimeters. The catch is that she’[s sure there are more, but she has no way to know how many or where they are: the MRI can’t detect anything smaller than 3 millimeters. So the plan is to irradiate my entire brain. Theu will do this slowly and gengly, using a dosage about 2/3 of the usual daily doe, over two and a half weeks. Dr. Dajaba is confident that these leukemic cells will be extremely sensitive to the radiaition, and that she will be able to all of it without damage to any of my brain, so that Anna and I will be able to buy her dinner in Lebanon when this is all over (Anna wants to hear the music and go dancing in Beirut!(.

Tomorrow morning we’ll gi back to the Radiation Treatment Center. There they’ll make a mask of my head, covering it with some sort of breathing mesh substance Gore-tex, maybe?) that will dry in the shape of my head. This mask will be used during treatment each day to hold my head in place, ensuring that I don’t move around and that the radiation goes to the same targets each time. I think they’ll also draw circles and arrows on the mask (shades of Alice’s Restaurant!) to mark the spots. When it’s all over, we get to keep the mask as a souvenir.While all this is going on, they will also be doine what’s called intrathecal chemotherapy: yesterday’s lumbar puncture (spinal tap) revealed that there’s also leukemia in the spinal fluid—in fact, Mary Alma Welch, Dr. Giles’ Physician Assistant, told me on the phone late this morning that 85% of the cells in my spinal fluid are blast cells. The good news is that they have already started the intrathecal chemo—they “instilled” the first doe yesterday immediately after drawing fluid they needed for the various tests they run. We ran into Dr. Giles in the skywalk this afternoon, and he said he couldn’t say for sure yet how many intrathecal treatments would be needed, but he’s confident that the leukemia will respond.

Then we’ll be able to start the systemic chemo that will prepare the way for the bone marrow transplant. But it will be at least two and a half weeks before that can even start, since they have to finish both the radiation therapy and the intrathecal chemo before the systemic chemo can begin.

Dr. Dajaba says I will lome my hair. I hear everone saying, how will we tell the difference? So that doesn’t matter. But it was an excuse to buy a new hat—two new hats, in fact, including a great big-brimmed raffia hat from Madagascar. I also have several new shirts that Anna and I bought the other day before leaving Austin—I had decided that if I had to spend a long time in the hospital I could at least do in colorful clothes instead of those designer gowns opoen all the way donw the back… Only problem is that we didn’t bring enough socks and underwear for an extended outpatient experience! But that’s easy to fix.

--Time to feed Dillon, so I’ll stop for now and send this. It’s been a scary day. But the fact is that I’’m no sicker than I was 24 hours ago; I just know more about what’s wrong. And that’s a good thing; it means the doctors and others *including the physicists, as Dr. Dajaba said) are gaining more knowledge about what[s happening inside my body and how to deal with it. And, since they actually started the intrathecal chemo yesterday, I may even be a little better than I was yesterday. Here’s mud in your eye.

And, as always, thanks for all the calls and emails and prayers. I haven’t checked email in several days now (oh, the horror! The horror!) but I’m working on it.

Love to all from me and Anna and Dillon.

PS, 9:40 PM. We had a nice dinner again tonight, this time at an Italian place called Divino, on Alabama. Anna had duck breast with fresh cherries and wine reduction, and I had a grilled redfish. Delicious, and good for the spirit. Great eavesdripping, too—Anna called it my people-listening, to complement her love of people-watching. Whatever else is going on, so far there’s nothing wrong with my appetite or with the availability of things to satisfy it. More on Houston restaurants in future editions…

Tuesday, May 16, 2006

Mystery man

he bottom like is: more tests needed. We saw Dr. Giles this morning at M.D. Anderson, and the first thing he said was, “I need a diagnosis”—it’s still not entirely clear what’s going on with me, though it’s also clear that something is going on. I had blood work done yesterday, 9 tubes’ worth: my blood counts are “perfectly normal,” as are liver and kidney functions, etc. I had another bone marrow biopsy done yesterday (the previous one was also done here at M.D. Anderson, on March 7): the very preliminary results are good here, too, but they’re doing advanced cytogenetic stidues as quickly as they can, tring to find any luking leukemia cells (I think he said they can detect 1 cell among 100,000 normal cells), then trying to get at the exact genetric makeup of any cells they do fine. It will take about a week to get all the results back, though he said they’re trying to speed things up as much as they can (How you do that?). So he doesn’t know yet what the spots are that showed up on the MRI brain cscan last Wednesday. He’s operating on the hypthesis that it’s leukemia, and has ordered more tests. I’m scheduled for another MRI of the brain tonight, and this time they’ll do the spine as well. Tomorrow I’ll have a lumbar puncture, otherwise known as a spinal tab, to collect samples of cerebrospihal fluid that can be searched for leukemia cells. (There probably aren’t many, but there may be a few.) I’ll also have a consultation with people in the radiology department to begin planning a possible course of radiation treatment—at the moment this seems the most likely option. There will probably also be systemic chemotherapy delivered intravenously, like what I was given at St. David’s last June; this would happen after the radiation therapy is finished, to “avoid any interactings” between them—probably both for my sake and to make it easier for the medical team to track what’s happening. Then will come the bone marrow transplant…

It all sounds hideous and no doubt will be heideous at least some of the time. But I’m deeply relieved, too, first because Dr. Giles didn’t tell us there was nothing he could do and second because it looks like both the radiation and the chemotherapy might be done on an outparient basis! Also, Dr. Giles says that I’m “young and fit” (!), which affords him the “luxury” of time to search for more clearcut answers before embarking on a course of action. He seems to want to act quickly, but my condition isn’t nearly as dire as it was last June (Dr. Tucker said something like this, too).

We’ll have to come to the clinic every day, probably, but at least we won’t be confined to a hospital room for the next X months. Anna is out right now, in fact, scouting out possible apartment locations.

And for the time being I’m a mystery man. Apparently it’s extremely rare for leukemia to resurface in the brain like this, or at least for AML to do so. And even when there’s a “16 inversion,” meaning that something is wrong on chromosome 16 so that the wrong enzymes are expressed—wich I think Dr. Giles or is PA, Mary Alma Welch, said was the most likely scenario for this—it’s still extremely rare. Dr. Giles said it’s so rare they don’t ever expect it or look for it—and they might not have seen it anyway since everything else seems OK (at least so far) and it might have escaped detection. He made it sound like leukemia is or can be devilishly clever, taking refuge in “sanctuary sites” where the existing instruments can’t spot it. (I was struck by this language—Dr. Giles is Irish, and I couldn’t help wondering if the metaphor came from his experience there). It’s frightening, but it’s interesting, too, and Anna said that Dr. Giles reminded her of a detective on the sent. But what the hell—this is one area where I’d have been perfectly happy to be perfectly ordinary.

We’ve met a lot of nice people, too. At lunch yesterday in the Marriott we talked to a woman who is here taking care of her sister; she told us about another hotel called the Rotary House, which is actually owned by M.D. Anderson and operated by the Marriott Corporation. It’s connected directly to the clinic via a walkway on the 3d floor, and is less expensive than the Marriott, where are nlw; apparently medical staff actually come to Rotary House to collect  blood samples. (A friend from BodyChoir had told Anna about a place like this, but I had missed the name; must be Rotary House.) We’ll be moving to the Rotary House tomorrow amd staying at least a couple of days; I guess it depends on when we can find an apartment.

I think it was on the walkway from the clinic to the Rotary House that we met a young girl, a teenager Anna said, who burst into tears when she saw Dillon. She said she hadn’t seen an animal since she got here—sometime in April—and she missed her dog at home. I took Dillon out of harness so she could say hello to him, then realized I probably shouldn’t have done it—turns out she’s  transplant patient, as I will be, and it’s probably not a good idea to handle dogs.  Then several other people wanted to pet Dillon, too, so left the harness off for a couple more minutes before we resumed our walk across the skiwalk.

We just had a wonderful dinner at a place called Café Rabelais—smoked duck and mango salad, filet of pork in a Dijon mustard sauce, a mexed berry tarte, a glass of something from Bourgogne. We had to do it—the PA to.d us as we left Dr. Giles’ office this morning that we should go where we want, do what we want, eat what we want. What else could we do but follow instructions?
And now back to the other reality: in about 5 minutes we’ll call the UT Police Department for a ride back over to M.D. Anderson, where I’m scheduled for an MRI scan of brain and spine. We’re due there at 8:30; once I go in it shold take about 45 minutes. I have a feeling that by this point in the day they’ll have had time to get really, really far behind schedule.

**Actually I was wrong. They were right on time, and I was done by about 9:r45, and we were back in the hotel about 30 minutes later, thanks to a ride in the UT Police Department shuttle again, with the same driver playing terrific jazz—Coltrane on the way there, Ahmad Jamal on the way cak.

One surreal moment: the ABC Building (Ambulatory something Clinic) is a huge place, in a building that’s only been open for about a year. At that hour it’s pretty empty, pretty quiet. In the Outpatient MRI Clinic, Anna and Dillon and I are seemingly the only patients, though I can hear the pulsing of at least one MRI machine somewhere, so someone else must be there as well (there are four of these machines in the clinic, each a multi-million dollar thing, so presumably they want to keep them going as many hours a day as possible). The surreal image is this: I am in a small room, sitting in a big leather reclining chair like the ones in the Infusion Room in Austin. The tech who led me in there to change from my street clothes into what seems like scrubs (I had to leave Dillon out in the waiting room with Anna, since his harness has so much metal on it) is a man from the Phillipines called Mineheart. He is playing music somewhere in the office. It’s the Lettermen, singing songs from the early 1960s. Mineheart asks me if I can hear the music. He stands in the doorway, singing along. He knows all the words. “Put your head on my shoulder…”

I know there are lots of errors in this text. Some of them are ordinary, everyday mistakes that I would have made anytime and corrected without a second thought. Some are not. I’ve decided to let them stand, because I want to document what’s happening; maybe there are data here that will help the doctors figure out what’s going on and how to treat it. Maybe not. I find it very painful to let the mistakes be.

Love to all of you, and     

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.

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.