Tuesday, November 29, 2005

Bone marrow biopsy and other things

I had a bone marrow biopsy yesterday (Monday) about 11:30 AM. Results should be back late this week or early next, though Dr. Tucker said he’d call if and when he heard any preliminary results. I’ll send something as soon as I hear.  Meanwhile, thanks to everyone for your good wishes, crossing of fingers and toes, and generally encouraging the universe to help me get and stay healthy.

Yesterday I heard tow accounts of a book I want to read—a review on Fresh Air and an interview on All Things Considered, both of course on NPR. The book is called The Woman at the Washington Zoo; it’s a posthumously published collection of essays by Marjorie Williams, who died on liver cancer this past January. I find myself drawn to such texts now, much as I was drawn to personal narratives about blindness 25 years ago as I made my first attempts to imagine what my life might be like as my sight deteriorated, and to come to terms with that imagining. It’s odd, though—when I think back, I think I read those books mostly so I could tell myself that I wasn’t going to be “like that,” whatever “that” was. It must have been a way of mobilizing my defenses cleverly disguised as a search for models and information. Most of the authors seemed to be caught in a double bind: on the one hand they were writing because the mere fact of blindness and the circumstances attending it made them special; on the other hand, they wanted very badly to present themselves as normal people living normal lives. That bothered me a lot, probably because I was (and often still am) caught in the same bind. Or maybe it was because very few of them seemed aware of the doubleness – the books I liked best and still tend to think about are the ones that did find a way to acknowledge the situation, as Ved Mehta does in the extended autobiographical project that he began in the 1970s, 15 years or so after a first book that was very much caught up in the double bind. I haven’t read enough cancer books to know if the same problem haunts them or not, and of course I don’t know either whether reading them will become part of a process of denial for me. The answer will probably turn out to be yes and no.

On Sunday afternoon Anna and I went to a memorial service for Sarah Sweetser, founder of Pure Luck Farms, winner of many national awards for its wonderful goat cheese. Sarah was 52, about eight months younger than I am; she died of cancer. We didn’t hear about it till after we got back from Spain, though she died on November 9, well before we left town. Anna had known Sarah for 30 years—they had been neighbors in Dripping Springs before Anna and I met, when Sarah’s daughter, Gitana, and Ledia were babies (Ledia’s about a year older than Gitana, who’s now married and has a young child of her own). Anna hadn’t been in close touch with Sarah recently, but we felt it was important to go. One of the most important things we’ve taken from my illness has to do with the importance of staying connected to friends and family, and of taking the time it takes to be connected. Sarah and many of the other people who turned out for the memorial had been at our wedding nearly 22 years ago; we had been there when Sarah married Denny. And there was the fact that Sarah was my age and that she had died of cancer; that was another powerful connection for me—ever since I got sick I’ve become extremely aware of (and shocked by) the number of people who have cancer, and I keep being struck by something Lance Armstrong says in It’s Not About the Bike: that as soon as you hear the words you’ve got cancer you become a member of what he calls the cancer community, and you never leave it. It’s not a community anyone chooses to join, of course, but it’s there nonetheless.

Sunday had turned into a beautiful, beautiful day. It had started out gray and cloudy and threatening rain and thunder, but by noon the clouds had blown away, the sun was out, and it was quite warm. It must have been 80 degrees or so by the time we parked near the farm at 1:30, and the air smelled good, a mix of grass and flowers and manure; there was a good breeze. We milled around for a while, greeting each other—there were a lot of people who hadn’t seen each other for years—and then moved on to the tent for the memorial. It was a big tent—there must have been 150-200 people there. Surprisingly, the first part was a religious service, strongly Christian. It felt very Texan, sitting there under that big tent in the middle of a big field on an absolutely gorgeous day in late November; it made me think of movies like Tender Mercies. Then it shifted over into remembering Sarah—people stood (or sometimes just sat) and told stories about things they remembered. Almost all of the speakers were women; their anecdotes were about kids, and gardening, and cooking, and goats, and about Sarah’s ability to get things done. Some of them were very touching. When the memorial was over we stayed for a little while, chatting with people who remembered Anna from her time in Dripping Springs; some I knew, some I didn’t. Then we headed home; we had friends coming for dinner, people we’d invited before we left for Spain; it was time. And we’re both very glad we went.

Saturday, November 26, 2005

Heading home

And now we’re heading for home after a wonderful week in Spain. Happy Thanksgiving, everyone. It’s Friday, November 25, and we’re somewhere over the Atlantic, roughly mid-flight between Madrid and New York. Today marks five months since the day my leukemia was diagnosed, and I’m thankful first to be here at all, and absolutely thrilled to have spent this past week in Spain with Anna. We’ve been in Gijon, a beautiful small city on the Atlantic coast, in the Asturias region. Our hotel, the Abba Playa, was on the ocean—Dillon spent a lot of time staring out the big window in our room, when Anna wasn’t taking him for walks along the boardwalk. There was a beautiful park right beside the hotel, too, the Parque Isabel Catolica I think—beautifully landscaped, with winding gravel paths among tall trees, including palm trees imported from the Canary Islands, and wonderful birds—peacocks, a flock of big honking swans, and a big aviary filled with all sorts of birds, seemingly all making noise together. I’m sure our birding friends could have told us what all of them were, and I wish I’d had an audio recorder with me—I’d have just turned it on and let the birds do the talking. In fact Pam Scott had suggested doing just that—audio snapshots and podcasts have become increasingly popular in blind circles—but I’ve never done it and for some reason the idea makes me feel miuch more self-conscious than writing like this. Something to try, though.

On the other side of the park was the local parador, one of a national chain run by the Spanish government that converts distinguished old buildings into good small hotels with very good restaurants specializing in local cuisine. This one is in an old cider-mill (18th century, if I remember right), cider being an Asturian specialty, along with wonderfully fresh fish and seafood. We had lunch there last Saturday, the day after we arrived in Gijon. We got to the parador right at 1:30 when they opened—I think we were the first to arrive for the formal opening, though there seemed to be a number of local people talking and smoking in the small bar where we entered, and where they first seated us because they weren’t quite prepared to allow Dillon into the more formal dining room. (That experience was repeated on a number of occasions—dogs aren’t allowed inside Spanish restaurants, and they apparently see very few guide dogs, at least in Asturias, so we would have to explain his role each time.)  But no matter—lunch at the parador, like virtually every meal we had in Gijon, was wonderful, and there was a huge amount of food. My meal began with a plate of broad, flat, green beans that had been gently steamed (or maybe sautéed? I don’t remember) in what seemed to be a mild pesto sauce, followed by a portion of grilled hake on a bed of thinly sliced potatoes. Mmmm. I had some white wine, too, and enjoyed it very much—I’d had very little wine during the previous few months, not because I’d been told I couldn’t or shouldn’t have it but because I just hadn’t felt like it; but now I did feel like it and had a glass or two with many of our meals

I had been pretty tentative about walking from the hotel to the parador that day—the trip over to Spain had involved more long walks through airports than I’d anticipated. We flew from Austin to Atlanta, where we had made sure to leave enough time to take Dillon outside to relieve himself and still make our connection to Madrid without stress; that part went just fine, but when we tried to come back inside we discovered that Anna hadn’t really been issued a boarding pass for that leg of the trip and they wouldn’t let us through security. So we had to go back to the Delta counter to stand in line, and by the time we got through that and got through security again it was pretty close to boarding time and we weren’t feeling all that relaxed. The actual flight to Madrid wasn’t bad—we had a center row of three seats to ourselves, so both we and Dillon had legroom. But the connection to Oviedo was another story. My records list me as disabled, so the airline had delegated someone to meet the plane. Anna didn’t have a boarding pass for Oviedo either (still don’t know why), so our assistant insisted first on taking us to the Iberia ticket counter, where we stood in line only to be told they weren’t at all sure there would be room for Anna on the plane; and then to the Delta counter, where they told us that Iberia does this to Delta passengers all the time; and only then did we get to follow Anna’s instinct and go directly to the gate, which involved taking a bus from Terminal 1 to Terminal 3 and then hunting for Area D, which in turn required climbing stairs and taking a moving ramp that slanted up like an escalator but had no stairs, a contraption Dillon and I had never tried before. At the gate they let us board without a murmur, though at first they wanted me and Dillon to sit in the very last row, an idea we nixed because we’d been though that one on our last trip to Spain two years ago, on the way from Madrid to Barcelona. Very bad idea. But they wouldn’t put me in bulkhead, so poor Dillon had to make himself very small (not an easy task for a 90-pound dog) to scrunch up under the seat in front of me, which was jammed up pretty close to my knees in any case.

But back to the parador. Even though I felt OK after a good dinner in the hotel restaurant on Friday night (where we were the only diners) and a good night’s sleep, I was anxious not to overdo it and didn’t really have a good sense of where my limits were. But it wasn’t a problem after all—the weather was mild (temperature in the 60s, I’d guess) and the walking was easy on those well groomed paths through the park, and I felt fine. Next morning I rested in the hotel room while Anna took Dillon on a long walk along the boardwalk. She came back and reported that Sunday was apparently family-outing day in Gijon—while the park and the restaurants (including the hotel restaurant) had been virtually deserted Friday night and Saturday, Anna said there were family groups everywhere on Sunday—walking on the boardwalk, sitting in cafes along the waterfront drinking coffee, eating ice cream, walking their dogs. We had lunch that day at a small place just across the street from the park, the Casa de Parque—another wonderful meal. This time it started off with a half-order of favada, an Asturian specialty dish made with fava beans, sausages, onions, and I’m not sure what else, cooked for a long time with herbs and spices to form a thick, delicious sauce. We both had grilled fish after that, at the suggestion of the waiter (who may also have been the owner); I think it was sole, though I got a little confused as to exactly which item on the menu we were discussing. Whatever it was, it was terrific—extremely fresh, grilled very simply, with just a few slivers of garlic on top. Of course I had to be sure I met my high caloric requirements by eating a dessert of flan with orange zest and bits of orange rind baked in. Yum again.

I don’t remember if it was that night or the next one (I think it was the next one) that we took a taxi into the area of town near Gijon’s seaport (the hotel and the park were actually on the outskirts of the old town) and went to a restaurant called Casa Victor that Anna had found in the guidebook. The book said the place would be packed with the stylish young men and women of Gijon—which has some quite sophisticated shops and cafes in the old quarter, as reported by Anna and by Jeffrey Zeldman and his wife, Carrie—but on that particular evening Casa Victor was virtually empty, except for a few locals drinking and smoking in the bar at the front of the restaurant (much like the parador on Saturday afternoon). The man who greeted us at the door wasn’t happy about Dillon at all—he really wanted to turn us away—but we pressed forward and he relented, though he seated us at the very back of the restaurant near the kitchen, in an otherwise completely empty room. We decided not to care, and the waiter actually softened a bit as he realized we were struggling to figure out the menu—it was all fish and seafood, and though we knew the English names for a few of them we had no idea about the rest. “English? English.” He asked and answered himself, and went away for a moment, then returned with a menu in English. It wasn’t quite in synch with the Spanish menu he’d given us—there were items in one that clearly didn’t appear anywhere in the other—but there was enough overlap so we could figure out that mero is grouper, one of Anna’s very favorites (actually, the waiter announced this with pride), and I decided on lubina al horno con salsa de cidra sea-bass baked in a cider sauce that was another revelation; and I had started with a plate of marinated fresh sardines that were also a treat. For dessert we shared a plate of Asturian cheeses—one sharp and dry and strong, a blue cheese; the other also strong but smoother and creamier; at least one was a goat cheese. Then we wandered off into the night and found a taxi to take us back to the hotel.

There were other memorable meals, too. Tuesday night, those of us who were speaking at the Web Foundations conference (the reason for going in the first place) were treated to another excellent meal, starting with a small, very hot glass of soup (like a liqueur glass), a pate made from spider crabs (of which I’d never heard before), and lobster croquettes—these were just the starters!—followed by a main course of baked fish (probably merluza, though I’m not sure) and potatoes. The next night everyone attending the conference was invited to a traditional Asturian meal that was served at a large cider-mill that seemed to be just outside the town. It was surprising—there was a long table down the center of the room, complete with place-settings and platters of food (sausages, some sort of battered and fried shrimp, ribs, bread and cheese, wine, cider), but no one sat down: instead, we milled around the big, echoing room, talking and snacking, and occasionally a live band would play traditional Asturian music, which sounds very Celtic—I’m not sure if there were actually bagpipes, but if not there was an instrument that certainly sounded very much like bagpipes, and the songs were long and slow with a kind of underlying wildness that made it hard to concentrate on conversation in a way that was different from the mere fact of the music and its volume.

The conference was very good—well organized and extremely well attended. There were 350 seats in the Centro Municipal auditorium, and every one of them was filled; there was even a waiting list with another 150 people who’d been turned away. There were no breakout sessions, just plenary presentations. Each day there were three presentations followed by a two-hour lunch starting at 2:00 (we’re in Spain!), and an afternoon roundtable/panel discussion from 4:15-6:00 (or so).
Tuesday was devoted to accessibility; Wednesday’s focus was on usability and Web standards. There was also an opening ceremony on Tuesday that featured short speeches by officials of the local and regional governments—something I’ve seen at the few other European conferences I’ve been to, something that marks an important difference between the role of government in Europe and in the US, and in attitudes toward government as well (at this conference, even people who critiqued government action or bureaucracy seemed to assume that government can and should play a positive role in civic life, an assumption that has been under withering attack in the States for the past 30 years or more—attacks whose net effect is clearly manifest in the moral, political, and economic bankruptcy of the present Bush administration). The opening speeches were followed by Shawn Henry from the W3C; she gave a nicely organized, very lucid presentation arguing that accessibility efforts (especially new initiatives or those carried out by people new to accessibility) should concentrate on those aspects of accessibility that are relatively straightforward before tackling the messier, more difficult “gray areas.”

Then came my turn. I spoke about the Web Content Accessibility Guidelines 2.0 and its role as a boundary object, mediating, defining, and redefining relationships among various groups and communities of practice within the international Web community—people with disabilities, industry representatives, academic researchers, Web developers and designers, usability experts, proponents and developers of technical standards, government regulators, Uncle Tom Cobley and all. I ended with a brief story about myself, explaining that I’d been diagnosed with leukemia in June and relating how, in my search for information following my release from the hospital, I’d been frustrated by encounters with many cancer-related Web sites that presented serious accessibility barriers. It wasn’t just about me, as I said in an earlier post about inaccessible cancer sites: the real point is that there are millions of people in comparable situations all over the world, people whose lives may depend on their having access to the information or services they’re looking for. Then I noted (I’ve said this before, too) that the Web’s astonishing success has come largely from the energy and creativity of people like those in the audience, who have been continually inventing and reinventing the Web since the day it was launched, and I challenged them to keep reinventing it, now with accessibility in mind.

Maybe I was imagining it, but the room seemed to go very still when I talked about leukemia, and the applause when I’d finished sounded loud and generous and sustained; Shawn said I’d made her cry. But whatever was going on in the audience, for me it was an amazing and beautiful moment. I’d been delighted to receive the invitation to speak sometime back in the spring, and going to Spain was one of the first things Anna and I talked to Dr. Tucker about during my hospital stay last summer; the idea of the trip had become a very big thing in my mind, a major milestone, a boundary object marking off the treatment phase from whatever’s coming next, which I hope will be a long, full life with leukemia receding farther and farther into the background, though it’s much too soon to begin thinking that way, and the bone marrow biopsy I’m scheduled for on Monday reminds me very sharply of that.

Whatever that biopsy shows, right now I’m feeling very good (except for sitting cramped on this very full plane), and I’m very very happy with the way the week went. When we left Austin last Thursday I was just coming out of the aftereffects of the last round of chemo, which had begun on October 24 and which had been pretty rocky, rougher than the previous three. I was still feeling unsteady and unsure of myself. Spain seemed a long way away, and the idea of speaking to a roomful of people (even before I knew how full that room would really be) was suddenly intimidating in a way that it hadn’t been for a long time (maybe it had never been intimidating in quite that way, in fact). It would be my re-entry; I would be going back into the world, and I wasn’t sure of my strength or resilience; I wasn’t sure I could bring it off. But the trip itself went better than I’d imagined, as I said earlier in this post, and I had more energy when we got there than I’d anticipated. By the time Tuesday morning came I did feel ready, and much to my surprise I made it through both days of the conference from beginning to end, including the two dinners, which didn’t end till well after 11:00 PM.

And I don’t just have that to be thankful for, though that’s huge. On Wednesday evening, Stephen Pemberton boarded the dinner-bound bus to tell me he’d just received a text message from Wendy Chisholm that the new Working Draft of the accessibility guidelines had been published. The word came too late for me to announce it at the conference itself, as I’d hoped to do, but the draft is out there now for review and comment, and that’s huge, too
(the first question everyone asked me was, “When will WCAG 2.0 be finished?” and though we can’t give them a firm date just yet we’re much closer than we were two days ago).

We celebrated Thanksgiving yesterday by going to Oviedo, the capital of Asturias. It’s a very old city, which had successfully resisted the Moors back in 721. Shawn Henry joined us, and the three of us went shopping (I bought a leather jacket, something I’ve been wanting for several years now to replace the old one I bought in England back in 1982), and we visited the Cathedral, a very ornate Gothic structure built around an inner chamber that dates from the 9th century. And of course we ate, a superb lunch that was like a more delicately-wrought version of Saturday’s lunch at the parador—a starter of those flat, mild green beans, this time with a thin crust of baked goat cheese with a hint of honey, followed by red mullet and a dessert of arroz con leche, the rice pudding that’s another Asturian specialty, which tasted like a cross between a sweet risotto and crème brulee (hard to beat!). Then we rode back to the hotel in Gijon, and in the bar there we were joined by Stephen Pemberton and the Zeldmans and their baby, Eva. After a while (it might have been a couple of hours, I wasn’t keeping track) Shawn went upstairs to her room and the rest of us walked over to a nearby restaurant called Tostadero, where Anna and I had had a very nice salad a couple hours after our arrival in Gijon last Friday—we’d been hungry, but at 5:00 PM it would still be hours before anyplace opened for dinner—and where we’d had a good dinner one evening as well. That felt good, too. It was nice to end the trip by having a meal with new friends.

Happy Thanksgiving.

Post script, Saturday afternoon: The last leg of our trip home was very long and felt even longer. We were on one of those so-called “regional” jets, a non-stop Delta Connections flight from Kennedy to Austin. But of course it was late—the flight from San Antonio to Kennedy got in late, so we boarded late, and then sat on the ground while the pilot did paperwork. Someone behind me asked the flight attendant why we hadn’t pushed back yet, and she said cheerfully that the plane was “overweight,” as if it were something that happens all the time (probably does). No doubt this was because the plane was full as a result of the airline’s having canceled the afternoon flight (the one my brother and his family had tried to take when they came to see us last month just before I started the last round of chemo). They “solved” the problem by randomly taking some luggage off the plane—including Anna’s, as it turned out. So we’re heading back to the airport in a little while to collect it. And then we’ll really be home. And I’m thankful for that, too. It was nice to sleep in our own bed last night.

Thursday, November 17, 2005

Heading for Spain!!

Dear friends,

We’re off! Anna and I are leaving for Spain (well, at least for the Austin airport) in about half an hour! I can hardly believe we’ve finally reached this point: chemo ended on October 29, and my hemoglobin and platelet counts finally started coming back up on their own earlier this week, meaning that I’m producing my own, and the doctor says I’m good to go . Hallelujah!

Getting here was a rollercoaster ride, as usual—a three and a half day hospital stay, four transfusions (I think it was four; maybe it was five), anxious waiting for blood test results. I was beginning to think it wouldn’ happen. I got so caught up in the day-to-dayness of it all that I couldn’t even write to let you all know how I was doing—what energy I had for writing went in to putting together my presentation for the conference in Spain and for the ongoing work on the Web Content Accessibility Guidelines—a new draft of which will appear in the next few days.

But here we are, and it’s very exciting.

Anna and I want to thank all of you from the bottom of our collective and individual hearts for all your love and support and good wishes . That sounds so flat, but I don’t feel flat at all. I love you!