Monday, September 26, 2005

My own private weather channel

I feel like I’ve been glued to the weather channel for the past two weeks. CNN and the other radio and TV networks that pay any attention at all to current events have apparently decided that only hurricanes are both newsworthy enough and noncontroversial enough to talk about, so there has been nothing else on the air for what seems like weeks now, and of course I’ve fallen for it, obsessively listening as coverage of the disastrously bungled response to Hurricane Rita gave way almost completely to endless talk about the exact shape, size, strength, and location of the tropical depression that grew into a tropical storm that became Hurricane Rita, an enormous storm matched in its size and pace by the monstrous, agonizing evacuation of the Texas coast.

Meanwhile I was obsessed with my own numbers. On September 12, the Monday following my transfusion on the 9th, all my counts were up: hemoglobin, overall white count, neutrophils, platelets. A good sign. But Tucker said he didn’t trust me, since I had fooled him during the previous chemo round when my counts went down again after coming up briefly. So he scheduled another CBC (Complete Blood Count) for Tuesday morning, and sure enough, everything was down. So I had another CBC on Wednesday, plus a shot of Aranesp. I got time off for good behavior on Thursday, then went in again on Friday. The counts were still coming down.

As I slipped deeper into neutropenic territory I took my temperature more and more often, too. It would be 97 point something at the beginning of the day, usually, but it would get to 99 point something in late afternoon or early evening each day; I would then take a couple of Tylenol and check my temperature every hour or so, willing it not to hit 100.5, the magic number that would be my cue to go straight to the ER (Emergency Room)—do not pass Go, do not collect $200. It didn’t. It never got above 99.6, but it scared me every time it went above 99. On Friday, my neutrophils had dropped to 100, and I knew they had bottomed out. That made me even more anxious—on Wednesday, when the neutrophils were at 300, Penny, the triage nurse, had sent me home with a Ziploc bag of surgical masks and instructions to wear one if I went out in public—including my next visit to the Cancer Center. And Micky, my chemo nurse, had said, “For God’s sake, don’t get near any sick people!” I was spooked enough that I spent most of the weekend in my room, listening to football games I didn’t give a damn about or turning to the news, which depressed me even more.

On Monday (the 19th) Anna left the house at 4:45 AM to catch a 6:00 flight to Minneapolis for the week. Hundreds of miles in a different direction, Hurricane Rita was gathering strength. My hemoglobin and neutrophils were too low, but the good news was that my platelets were up for the second time in a row. That had been the leading indicator both during the induction chemo in the hospital and after the first consolidation round, so everything else should follow soon. But it was slow as Rita. The neutrophils were coming up, but they were still very low, and for some reason my hemoglobin kept falling despite the Aranesp shot the previous week and a new iron pill that I started taking on Monday. By Wednesday morning the neutrophils were up to something like 1100—definitely an improvement—and my platelets were up to 399,000, at the very top of the normal range. But my hemoglobin had dropped to 8.6, down from 9.26 on Monday. I knew it was down—I could feel it in my shortness of breath when I squatted to pick up the dogs’ water bowls (Ledia had come back to town on Tuesday for her gallery talk at AMOA on Thursday, so Utah was with us again too), and in the time it took me to regain my breath after taking Dillon out to relieve himself. Another concern for me was that 8.6 was just a tenth of a point above the number that had signaled an immediate need for blood when I was in the hospital back in July.  It was just weird. I told Penny that I was worried about being so close to that threshold, and she went to talk to Dr. Tucker and see what he wanted to do. He ordered a transfusion—two units of packed cells (just red blood cells, please ma’am, no platelets or other stuff), and I waited while Penny wrote up the orders for the hospital and called it in. Then I went to Banzai with Wick Wadlington (who had made the mistake of offering to drive me to the clinic that morning as what I had said would be a prelude to an early lunch. Wick told me about his new volunteer work assisting efforts to counter domestic abuse in Williamson County north of Austin—an extremely conservative area and the fastest-growing county in Texas.  He told me about the training he had been through, and then graciously drove me back across town to St. David’s. I tried to use the “frequent flyer” card they’d given me two weeks earlier, but the admissions clerk, Kerry, who remembered me all too well, said her bar code reader wasn’t working so she had to enter the data again anyway.  So much for high tech. Then she walked me back to the lab, where the lab tech drew blood for type and cross, and that was it. Kerry walked me back out to the lobby where Wick would be waiting. On the way a husky female voice called out, “John!” I stopped in my tracks as the memory clicked in: “Mary!” I said, and opened my arms for a big hug. The voice elonged to Mary (I don’t know her last name), the tech who had come in every morning at 6:00 while I was in the hospital to get my vital signs and just generally to make sure I was OK.  Mary brought me urinals, helped me to the bedside potty, and wiped my butt when I couldn’t do it for myself; later she guided me to the bathroom as I started to walk again, and got me back into bed when I was ready. She gave me my first bath when I was still so weak I could barely get into the tub, and it felt so good to have that warm water going over me and to be doing something normal again that I wept as I sat there. Mary’s a former drill sergeant; she’s funny, passionate, intensely loyal; it was wonderful to run into her like that.

We went on to the lobby and found Wick. I waited outside the main entrance while he went up to the garage to get his car.

As I stood there I heard a voice calling my name. It was a colleague from the University, a Web developer I’d worked with on several occasions over the years. We shook hands, and then like a fool I said, “What are you doing over here?” There was a short hesitation and then he told me that his wife had been pregnant. The child, he said, didn’t make it. I froze, said nothing for what felt like forever, then said something like “I’m so sorry” and just stood there. It was so shocking, so sudden, and he had had the decency in the midst of his grief to call out and greet me and to express his pleasure that I was on the road to recovery. I was dumbfounded. I told him again how sorry I was and he said he had to go; he climbed into his car and drove off. I stood there, on the verge of tears at the awfulness of it all, but suddenly there were happy voices coming out the door, a call of “Congratulations!” from the parking attendant or a nurse or someone, and then a woman’s voice exclaimed, “A brand-new baby!” Another car door clunked shut and drove off with that new life inside. It was an incredible moment; I just couldn’t contain it. I couldn’t even say anything about it to Wick when he pulled up a couple of minutes later. Inappropriately, my memory brought up an image from a little village in Spain, Frigiliana, where I had gone to visit David and Sharron Wevill during the Christmas holiday in 1981: walking down the main street one day, I had seen a mule pulling a wagon up the hill just as a car passed it going down-- worlds passing in the street. Somewhere I have a photo of it. For some reason that moment in front of St. David’s was like that. I thought of the hurricane out in the Gulf. Dr. Tucker had told me I could stop taking Levaquin (an antibiotic) because my neutrophils were up high enough that he was no longer concerned about neutropenic fever. But that evening my temperature hit 100 degrees, higher than it had been since August 29, the night we went to the ER. I took some Tylenol, but I was afraid the temperature would keep rising, and I didn’t know how it would affect the transfusion next morning. I called the exchange, and the doctor on call suggested I go ahead and take Levaquin anyway (I had told her that Tucker had said I should stop it), and said I should go to the Cancer Center in the morning and get another CBC along with a urinalysis and a chest x-ray to rule out pneumonia. I thanked her and hung up, then remembered the transfusion at 9:00. So I called back, and she said she’d arrange to have the tests done at the hospital while I was there—the transfusion could go forward unless my temperature went a good deal higher.

That part didn’t work out for some reason—I had to go back to the Cancer Center after the transfusion—but otherwise things went smoothly on Thursday, all things considered. Diane, Anna’s assistant, came to the house at 8:30 (she usually comes in at 9:00 on Thursdays) and drove me over to the hospital. We did the admissions dance again (the bar code reader still wasn’t working), and Kerry walked me back to Day Recovery. I sat for a while in the waiting room, and at about 9:30 Helen came to take me back to what would be my room for the day (she had been there the first time I went to Day Recovery back in August, but had missed my previous visit this month). I started to pull Dillon’s blanket out of my backpack (it’s cold in those rooms, and on our first visit Dillon had been shivering), but Helen stopped me: “I’ve got a heated blanket for him!” she said, and spread it on the floor. I said we could add the one I’d brought, but she was too quick for me: “Oh, no, I’ve got two!” she said, and that was that; Dillon was one comfortable dog. Melissa, a nurse who had also been on duty my first time in Day Recovery and had also managed to miss the second visit somehow, came in to access my port and get things started. I was surprised that there weren’t any pre-meds this time: earlier in the month they’d given me both Benadryl and prednisone (or some relative of it) before starting the platelets, and I wondered if they were supposed to do it again. So Melissa called to check, which of course slowed things down a bit; but Tucker said I didn’t need anything, so we finally got started around 10:30 AM.

From there on it was pretty straightforward. I spoke to Gregg Vanderheiden a couple of times to get closure on things we’d been emailing about the day before, and called over to the office to talk to Kay. At some point Diane very kindly brought over a sandwich. I ate that, and chatted with Melissa every time she came in to check my temperature and see how I was doing. For some reason I didn’t feel like reading. I thought about turning on the TV to see what was happening with the hurricane, but I figured I knew the answer—it would still be hundreds of miles away, still a Category 5, still aiming for somewhere along the Texas coast—and I couldn’t stand the idea of listening to the reporters whipping up excitement about slowly impending disaster.  So I just drifted for a while. Finally, about 10 minutes after Melissa got the second unit of blood going at 1:00 or so, I picked up my Bookport and picked up reading One Hundred Years of Solitude where I’d left off. Just as the transfusion was coming to an end, I heard about the brutal massacre of thousands in the town square and how the government had wiped the event from public memory.

Diane picked me up in front of the hospital about 3:25. We stopped at the house on our way over to the Cancer Center so poor Dillon could pee. At the Center they drew blood and got me to pee in a cup, then sent me downstairs to Austin Radiological Associates for the chest x-ray since they’d have a radiologist on hand to read the image right away and let me know if anything was amiss. By now it was getting very close to 5:00, so it would be the doctor on call that evening who would get the results. We stopped back at Penny’s office (the triage nurse) to check on the results of the CBC and get any final advice before going home.  CBC was good: neutrophils were up to 1700, overall white count was at 4300; platelets were at 385,000, down a little from the previous day but still very healthy; and, thanks to the transfusion, the hemoglobin was up to 10.9, more than two points higher than it had been in the morning.  Encouraged, I went on home, and Diane finally got to head for her long commute out to the north and her own hurricane preparations (she had also been scouring the city for batteries, water, etc., for us, in case we lost power from the predicted high winds and heavy rain). Tired, hungry, and craving something a little sweet, I ate a bunch of grapes that Ledia had just brought in. I fed Dillon and took him out into the blazing heat, then came back in. I ate some cheese, then warmed up a couple slices of pizza left over from a couple days earlier and went to lie down. I checked my temperature an hour or so later. I couldn’t believe what I heard: “Your body temperature is 100.3 degrees Fahrenheit,” the thermometer announced—the highest yet! I took some Tylenol and lay there, willing it to come down but sure that it was on its way up and that I would soon be on my way to the ER. But it did come down, to 98.7 or so; then it went back up to 100 even before finally coming steadily down. I woke up at 4:00 with my chest and forehead covered in sweat, and got very nervous; but when I took my temperature it was just 98.4, so I relaxed and went back to sleep.

I woke up again for good at about 5:00.  My temperature was still OK, but I felt as if I were going to break out in a sweat any minute; it was a very strange feeling, and I was very uncomfortable with the idea of heading into the weekend without making contact with Tucker. The storm was coming. Hundreds of thousands of people were driving toward Austin ahead of it, or rather sitting in 100-mile-long traffic jams; patients from hospitals down on the coast were being airlifted in to Austin hospitals, and the idea of having to go to the ER over the weekend was even more dreadful than usual. I called Tucker’s new nurse, Estee, and told her how I was feeling and how high my temperature had gotten last evening. She called back a while later and said Tucker would see me at 1:45.

That was a relief. And meanwhile, Anna had come home from Minneapolis, even getting in on time. That was a big relief, and so was the weather forecast for Austin: it looked like we were going to get off very lightly from the hurricane—hardly any rain in the forecast, just some wind but not enough to worry about. Anna and I went and got some lunch, then went over to the Cancer Center. Tucker looked me over, listened to my breathing, checked for swellings (lymph nodes, spleen, etc.), and looked at my chest x-ray and my lab results. All fine. Nothing out of the ordinary. Then he said what Dr. Youman had said three weeks earlier: that if I had continued fever over the weekend, the most likely culprit would be my PortOCath and they’d have to remove it surgically and implant another one. I sat there glumly. He tried twice to call St. David’s and couldn’t get through at all. I was glad I’d had my transfusion the day before, but even more worried about what it would be like if I had to go there over the weekend. He told me to stop the Levaquin—he wanted to see what would happen without it—and told me to take Tylenol if my fever came up. He also gave us a prescription for a different antibiotic, which I wasn’t to take unless my fever reached 101 degrees or higher. And I should see him again on Monday (today).

That night my temperature behaved itself admirably. It hit 99 once, but then came down and stayed down. I woke up sweaty again at about 4:00, but my temperature was 97.7 when I checked it, and it was 97.2 when I woke up again a couple hours later, and it stayed in the comfortable ranges all day and again Saturday night. Even our small impromptu dinner party—a few of Anna’s friends from the group of Self Relations therapists she’s been participating in, including one evacuee from Houston who had been doing counseling work with evacuees from Katrina—didn’t faze it, and  I enjoyed myself thoroughly.  I excused myself early and went to bed. Anna came in an hour and a half or so later after everyone had left and went to sleep for a while; then she got up to go back to work on her program for Bodychoir, because she was facilitating in the morning and had to finish selecting and arranging the music. I woke up feeling good; my temperature was 97.2 again. And no night sweats this time!

Rita had made landfall around Beaumont/Port Arthur in the middle of the night. The towns were devastated, along with Lake Charles and a number of other places in Louisiana (Governor Blanco had come on the air the previous evening to say the entire state was at risk), but most of the reporters seemed a little disappointed—it was “only” a Category 3 when it came ashore, and the really big metropolitan areas like Houston hadn’t really been hit at all. Even Galveston had gotten off comparatively lightly. I was very relieved about my temperature  and sense of physical well-being, but my mood turned funky and sour. I couldn’t figure it out—why was I so grumpy when I felt better physically than I had for what seemed like weeks? And then it hit me that that was exactly why—I was angry over having felt lousy and scared for so long.

I said so to Anna, and she said maybe this would be a good day to come to Bodychoir even if I didn’t feel up to dancing. I agreed—I had been thinking the same thing—and off we went. It was great. I didn’t dance much—just a little toward the end—but I felt such warmth and love from the people there, many of whom came over to the place where I was lying down to give me a hug or rub my head or feet, that I could just feel myself relaxing, letting out my breath, letting my shoulders drop from where they’d been around my ears. Afterwards Anna and I drove up to Elsie’s for lunch and then went on home. Anna made some phone calls about the family of Hurricane Katrina evacuees from Gulfport, Mississippi that we’ve “adopted”—trying to find beds and other essentials for these people who lost everything in the storm (if you’re in Austin and you’ve got a bed you can spare, please give us a call!). In the evening we rented a video and watched it together—something we so rarely get a chance to do it felt like we were on vacation—and then went to bed. My temperature was still behaving itself.
I saw Tucker again this afternoon. I asked him if he’d known my fever would come down like that.  He said no, he really hadn’t known what would happen, and the only way to find out whether the PortOCath was still giving me problems was to get me off the Levaquin and see what happened. He said he wouldn’t have been surprised either way. Then we talked about starting chemo again. He hesitated for a while, wondering aloud whether we should give my body another week to recover. But I wanted to get on with it, and in the end he agreed, sying that after all it would be better to delay the next round (the last one!) than this one, if we had to delay anything. I’ll ask him about that when I see him next Monday.

Meanwhile, it’s Tuesday morning, and here I am in the Infusion Room with a little over two hours to go on the morning dose. It’s Day 1 of Round 3.

Sunday, September 11, 2005

Disjointed memories of connection

Very early in my hospital stay it came to me that I had to form a conscious intent to live. The doctors and nurses and techs working on me in what I felt as darkness couldn’t help me if I didn’t help them, and the only help I had to offer was the ability to form that intent and hang on to it no matter what. I remember saying to Dr. Kilbourn, the oncologist who got my treatment started, that there was something trying to kill me and I wasn’t going to let it, and I remember his voice saying something like, “That’s right,” and his hand touching my shoulder briefly. Earlier—maybe the same day, maybe a day earlier, I don’t know—he had said that the usual thing after a leukemia diagnosis was to discuss treatment options and the preferred sequence. But this time, he said, there were no treatment options and there wasn’t time to follow the preferred sequence. My condition was life-threatening, and they were going to have to perform leucoapheresis and start chemotherapy immediately, without waiting for the leucoapheresis to be finished.

Somewhere in there a bone marrow aspiration and biopsy were performed. I don’t know who actually did the work—probably Dr. Kilbourn.  I remember feeling the pressure on my back, but no pain. I must have been too sick to transport, because an anesthesiologist had apparently come to my room to put me under “Twilight sedation” so I’d be able to tolerate the procedure.

Sometime in the darkness strong arms came up under my armpits and around my chest and lifted me like a rag doll. There was a woman’s voice and an intense pain in my right upper arm as if a hot wire were being pushed through. The wire was withdrawn and the pain switched to the other arm; the woman’s voice kept up a flow of encouragement, though I don’t remember anything specific. I think this was Diane installing a PICC line a Peripherally Installed Central Catheter, though I had no idea of that at the time, and it wasn’t until weeks later that it finally occurred to me to ask someone what a PICC line was—I had been thinking that it was spelled p-i-c-k and that it had something to do with doctors and nurses “picking” a line to use for drawing blood, infusing blood or drugs, etc.  The first attempt to install the PICC line in my right arm didn’t work for some reason—hence the switch to the other side—and in the aftermath phlebitis set in: my right arm became swollen and weak, and I couldn’t use it to feed myself (though for a while I wasn’t strong enough to do that anyway, and in any case I had very little appetite).

I don’t know whether the PICC line went in before or after the leucoapheresis started. I don’t remember much of this part, either, and I was barely aware of what was going on. I have another memory of being lifted and of flopping like a rag doll. There was a pain at my neck (though the memory of pain may come from some later point, after the procedure had been completed), and there were two women’s voices, one high and clear (that was Paula) and the other deeper and huskier (that was Goldie). They talked, to me and to each other. Their voices sounded calm; they were telling me everything was going to be OK, I think, and occasionally I heard Goldie asking a question and Paula answering. At some point for some reason I needed to be upright, I think, and I think I remember Goldie draping my arms around her neck and telling me just to hang on as she stood up, lifting me. But I’m not sure—that might have been Mary, the tech who worked the early morning shift, whom I confused with Goldie for a while. Paula and Goldie were nurses with special certification to perform leucoapheresis—two of just a handful of people in the area who had the necessary training. According to Anna’s first email to friends and family, they did the leuico-aphoresis twice in order to get my white blood count down to manageable levels.  Goldie told us later, when she stopped by the room several weeks later as I was on the verge of being discharged, that they had reduced the count by 100,000 on the first pass on Sunday, and by another 50,000 or so the second time. She said she had prayed for me as she was driving in to the hospital that first day, knowing that I was in deep trouble. I have tears in my eyes as I write this. I had no idea at the time how terribly sick I was, or how close I had come to dying. I heard later that no one with a white count as high as mine had ever come into that hospital and lived as long as I had, and later still that I probably wouldn’t have lasted more than another 24 hours if Anna hadn’t brought me in to the hospital when she did.  I am a very, very, very fortunate man. and I’ll be forever indebted to Paula and Goldie and to all the other men and women whose names I never heard who worked so hard and with such tenderness and strength and skill to keep me alive. And of course to Anna, It must have been some penumbral awareness of how hard they were all working that brought me the recognition that I had to intend to live—that was the one thing they couldn’t do for me. When Goldie visited me in my room later, she recited a poem and said I owed her one. It’s coming, Goldie; I haven’t forgotten. But I can’t write it yet.  In the meantime, here’s a very short poem by William Carlos Williams, a doctor-poet who practiced both his medicine and his writing in Rutherford, New Jersey, in what was then (between about 1910 and 1940) a more rural area:

So much depends

A red wheel

Glazed with rain

Beside the white

That’s it. One of the things I like about “The Red Wheelbarrow” is a story I read somewhere that says Williams wrote it in a farmhouse, where he sat looking out the window of a second-story bedroom where his patient, a young girl, was gravely ill. He watched the barnyard below as he waited to find out whether the girl would live or die—he had done all he could for her. I just now remembered that the poem was published in a book called Spring and All in 1923, the year our house in Austin was built; Williams may have written it that year or the year before, in 1922, the year my mother was born.

The early days in the hospital were surreal, hallucinatory. For several days I would come out of sleep or medicated fog, thinking I was lying in a room at Sisters of Mercy in Buffalo, where my mother died two years ago. I knew that that was wrong but I couldn’t shake the belief. I must have sensed that I was close to death—it was as if I was now identifying with my mother in her hospital bed two years earlier.

And there were the nightly hallucinations. I’m not sure how many days this went on, but it was long enough so that I came to dread impending nightfall. It was as if sundown brought down a curtain or screen that stretched from wall to wall and floor to ceiling. The screen was filled with columns and columns of text. The text was illegible, as most text has been for me since about 1993, but I kept trying to read it. A word would almost come into focus, but as soon as I shifted my gaze toward it would slither and change and become completely indecipherable. This is pretty much what happens now when I try to read anything, but it was bizarre to have it going on in what I knew was a hallucination. I could never figure out what the text was supposed to be—I think it was probably some confused draft of the Web Content Accessibility Guidelines 2.0,, since the Working Group had met just two days before I went in to the hospital to approve the new draft we had created a week earlier at the face to face meeting in Brussels.

One day I came out of a very vivid hallucination laughing. I had just hallucinated an entire meeting, complete with a big conference table, laptops, cell phones, and quite a few people, about the launch of a (non-existent) new magazine called CD Technology or something like that.  In the hallucination I knew I was ill. People were handing me copy to look at. There was something special about the logo, some clever trick that impressed me. But whenever I turned to take what was being handed to me I would get dizzy and topple to my left. Then I came out of it, laughing at myself for having had such a ridiculously realistic and convincing hallucination about a stupid meeting, of all things!

I think it was that hallucinated meeting that helped me put a stop to the damned nightly text projections.  The text appeared again that night, but this time I was able to formulate not just the question What is this and what am I supposed to do with it? But an answer: The answer was that I didn’t have to do anything—whatever it was, it wasn’t a problem I had to solve. And with that recognition, the text went away and didn’t come back. It was a revelation, a way to work to a recognition that I had to (and have to) let go of a great many things. In my waking life outside the hospital, I keep discovering that I’m not there yet.

I don’t know when I got to the point where I could have visitors. I think it was pretty early on—maybe even the first or second day.  But from very early on my room was flooded with love. Friends from Bodychoir came quickly to my side, bringing with them their deep emotional responsiveness and their intense physicality. My brother, Peter, and my father, Myles, came from New York City and Buffalo, respectively.  Ledia and Mason put their long-planned road trip to California on indefinite hold and stayed to help take care of me. Former students called from various parts of the country. Friends and colleagues from the English Department, the Rhetoric Division, and other parts of the University and the accessibility community came to visit, or called if they couldn’t get there. People sent flowers and plants and audio books and music. Oscar brought me copies of the music he played at Bodychoir the night he learned I was sick. It was achingly beautiful, and Anna and I wept as we listened to it.  My friends from the Web Content Accessibility Guidelines Working Group sang a song for me on the conference call that week; Dave Macdonald (who wrote it to the tune of the Beatles’ “Come Together” and sang it the first time through) recorded it and sent me the CD. That had us laughing and crying at the same time, and Anna played it over and over again so that everyone who came to visit had a chance to hear it. There were so many people the hospital moved us into a larger room.  Friends coordinated with Anna to take turns spending the night on a cot near my bed in case I needed something like a urinal or some ice chips or a nurse in the middle of the night, so Anna could get some rest.

That love, too, kept me alive. It was like a whole different kind of infusion, filling the room, filling me and giving me the strength I needed in order to hold on to my intent to live. I understood this one afternoon while I was lying in bed, receiving a blood transfusion. I heard the pump going, put my hand on the tubing connecting the pump to the port in my PICC line. Suddenly I felt an overwhelming awareness of and gratitude to the thousands of people and animals who had made that moment possible for me—scientists, graduate students, patients, research animals, technicians, engineers, doctors, nurses, lab techs: all the people who over the years had contributed in some way to the development of the tools and techniques and methods for extracting blood, isolating specific components (plasma, platelets, etc.) that could be infused separately; developing the protocols for ensuring that the correct blood is delivered to the correct patient; and so on.  The line was throbbing with that sense of connectedness. And I still had the memory of how it had felt a little earlier in the day when someone from Bodychoir had sat by my bedside holding my hand. And all of a sudden I got it, got that all of it was necessary—the high tech sterility and rigor of Western medicine and science and the touchy-feely, New Age sensibility of our friends from Bodychoir, with their preference for homeopathic remedies and their intense empathy. Love couldn’t heal my leukemia by itself—but science couldn’t do it without love, either.  They needed each other. I needed both sides, and I was, for that moment at least, the bridge between the two worlds. So here’s to modern science, and here’s to New Age anti-science. And here’s to being in the here and now.

How important that connectedness is came home to me again last Monday, Labor Day, as I listened to Fresh Air on National Public Radio. Terry Gross’ guest that day was Nick Spitzer, host of a weekly radio program called American Routes, which originates in New Orleans, or did before Katrina hit. Spitzer, I learned that day, had been the official folklorist for the state of Louisiana; he was now an evacuee like so many others. He didn’t yet know whether either his home and his studio, with its archives and recordings of Louisiana music, were safe. (He still isn’t sure, but today he broadcast a wonderful program called “After the Storm” from the studios of KRVS Radio Acadie, the public radio station in Lafayette, where he’s taken up temporary residence.) He remarked during his conversation with Terry Gross that New Orleans was a unique and terribly complex set of family and neighborhood networks which, among other things, expressed themselves in the terrific cuisine and music for which New Orleans is so famous, and he talked about the risk that those complex and delicate networks might be damaged or destroyed in the aftermath of the flood as neighborhoods and families are evacuated to shelters in different cities. It seems that almost every news item in the week since that broadcast has made me aware of yet another delicate structure that’s part of a great city—a neighborhood bar, an opera company, dance and theater troupes. Those things can’t be reconstructed, just as hundred-year-old houses can’t be rebuilt to be 100 years old. They have to grow and change and settle, and it’s the connections among them that make the city and its culture. Some of those delicate structures are pretty resilient: today I found the Web site of WWOZ, New Orleans’ wonderful  community radio station (Anna and I came upon it as we drove around the city two years ago when we went for Calum Chisholm’s wedding), still streaming Zydeco over the Web and headlining itself “WWOZ in Exile.” Sometime last week I had heard on either CNN or NPR an anguished comment from the president of the board of WWOZ, who was stranded at the New Orleans Convention Center (or the Superdome) with his 81-year-old mother and his brother, who has Downs’ Syndrome (which perhaps explains why the old WWOZ Web site had a disability awareness page).  Each news story reminds me of how interconnected my own life is, and how life itself emerges from those connections.

Saturday, September 10, 2005

Two surprises

There were two surprises yesterday. Not the need for the transfusion. I had been expecting that, since I’d needed transfusions both after the induction round of chemo during my hospitalization in July and after the first consolidation round in August—and because doctors and nurses alike had warned us that it would be necessary. So that wasn’t the surprise.

The first surprise was that the blood was ready quite a bit sooner than I’d expected. I had figured it wouldn’t get there till 5:00 or 6:00, but Peter, a nurse at the Day Recovery unit, called about 1:45 to say that the blood had arrived and they were ready for me. I just needed to stop by the Admissions desk to register before coming down to Day Recovery. Anna dropped me at the main entrance and I went in to register. The process ended up taking nearly an hour for some reason, all but about 10 minutes of it spent waiting in the lobby. It didn’t sound that busy, so I’m not sure what was going on. At any rate, eventually they got me registered, and this time the woman also gave me a plastic card which apparently has all my registration information on it. This must be a sign that I’ve become a regular at the hospital, someone who shows up often enough that it’s worth speeding up the process. So I’m a frequent flyer.

The big surprise came about an hour and a half later. After accessing my port and infusing two preliminary medications—Benadryl and some form of prednisone, evidently in anticipation of some sort of reaction—Peter got the first IV of platelets going. A few minutes later, my forearms started itching; Peter evidently saw me scratching and asked if I was experiencing an unusual degree of itchiness. I said yes, and he kept watching. All of a sudden he said, “Hey, I see a welt!” and a second later another one popped up, then another, and another, and another. Peter turned off the IV pump and went out to call Dr. Tucker’s office. Tucker’s instructions were to give me another dose of Benadryl IV, wait 30 minutes, and then resume the platelets. So that’s what he did, of course, and sure enough, the itching subsided and the welts—which had grown so large and so rapidly that they joined together in one large lump on each forearm—gradually disappeared.  Everything went smoothly after that. At some point Anna came over with a couple of barbecue sandwiches for me and some food for Dillon, then went on to Bodychoir where again it was her turn to do the music. One of the nurses offered to take Dillon outside, and I lay there listening to One Hundred Years of Solitude and waiting for the transfusion to finish. It was done about 7:15; it took a few more minutes to clean everything up and get the release form signed, and then Peter walked me out to the front door. Peg Syverson very generously picked me up a couple minutes later and drove me home, then stayed with me for the rest of the evening—she left just as Anna was pulling up out in front of the house.

It’s Saturday morning now, and so far everything seems fine. The itching and the hives I experienced last night haven’t returned, and my temperature’s been normal so far. So here’s hoping!

Friday, September 09, 2005

Here we go again

Here we go again: sometime later this afternoon or early this evening I’ll be going back to the Day Recovery unit at St. David’s for a transfusion—two units of platelets and one of good red blood.  No surprises here. I had a CBC (Complete Blood Count) on Wednesday afternoon, and the counts were coming down: hemoglobin at 10.6 (down from 12.7 on Friday), neutrophylls at 1.0 (down from 2.6), and platelets were at 52 (not sure what they were on Friday, but a week earlier the platelets had been at something 250,000, well above normal).   Today, of course, they were all lower: hemoglobin at 9.6, neutrophylls at .7, platelets down to 11. Penny, the triage nurse, read me the numbers and then went off to talk to Dr. Tucker and find out what he wanted to do, and off we go.  We’ve already been over to St. David’s, this time carrying written orders for both the Admissions desk and the nurses in Day Recovery, and we just got a call from Day Recovery to tell us that the Blood Bank is now processing the order for blood, and they’ll call me as soon as they know the blood and platelets are on the way to the hospital.  So far, so good—much smoother than it was back in August. But who knows when the blood will actually get there? Apparently I have an antibody in my blood, an enzyme or something called “E” (catchy name), which I gather is unusual enough to make it a bit harder to find a correct match.  And then, once they find the right stuff, they have to irradiate the blood to make sure it doesn’t contain anything that might cause an infection.  So it takes a while. I figure I’ll be lucky if they get the drip started by 6:00, which means I probably won’t get out of there till 11:00 or 12:00. And something the guy said on the phone just now raised the possibility that they might check me into a room upstairs instead, presumably because if the blood arrives too late the Day Recovery people will have gone home—I learned last time that it’s one thing for them   to stay late to finish something up late in the evening, and something else again to start a procedure. So I may be headed upstairs.  

Meanwhile, Anna and I had a good lunch over at Hyde Park and now I’m home, resting and waiting for The Call. Meanwhile, rescue and recovery continue in New Orleans and along the Gulf coast, and thousands of evacuees, here in Austin and elsewhere, are trying to find family members and organize new lives for themselves.  Anna just told me that Michael Brown has been pulled off the recovery effort and sent back to his office in Washington. Hopefully they’ll have pulled his phone and Internet access, but spanking him and sending him to his room without supper won’t begin to make up for the damage he’s done.

Monday, September 05, 2005

Chemo and Katrina

It was a weird, awful week. My second round of consolidation chemo began on Monday morning as Hurricane Katrina was laying waste to the Gulf Coast. As I sat down in my big leather recliner in the Infusion Room, the TV news was switching rapid-fire from New Orleans to Biloxi to Mobile to Gulfport, reporters shouting to make themselves heard above the howling winds, trying to talk about what was happening around them while their camera crews watched for flying debris. It appeared then that New Orleans had escaped the worst, while the Mississippi and Alabama coasts were getting absolutely hammered. Micky gave me a shot of Aranesp to boost my hemoglobin production and set up the IV to deliver a dose of Kytril to prevent nausea. The IV pump clicked and whirred quietly and the news from the storm jumped more and more frenetically from site to site, the reporters’ sentences breaking up more and more frequently, sometimes cutting out completely for several seconds, then coming back only to disappear into silence. After a while I couldn’t listen to it any more—the anchors in particular seemed to be too enthusiastic about the destruction they were showing us and the danger their colleagues were throwing themselves into—and I started listening to One Hundred Years of Solitude on my Bookport, somehow having lived all this time without having read it. The morning dose was finished just before 12:30; Micky connected the portable pump and IV bag for my evening dose and tucked everything neatly into the fanny pack. Diane, Anna’s assistant, drove me home because Anna had a 12:30 conference call with an important client.

I felt a little achy but it wasn’t as important as the roast beef sandwich I was having for lunch (I had made the roast on Sunday afternoon with lunches in mind) and I didn’t really think about it. I lay down for a while after lunch, then got up and read my email. At 5:00 I called in to the W3C’s conference bridge for the weekly planning call with Gregg Vanderheiden and Wendy Chisholm. I wasn’t feeling great at that point but we were going to discuss some important issues and I wanted to be on the call. After about 40 minutes I was feeling pretty crummy and said I didn’t know how much longer I was going to last. I hung on till just before 6:00, then abruptly said good-bye and disconnected. By the time I got to my bed (in the next room) I felt the beginning of the chills and shakes coming on. I knew from my experience in the hospital that this signaled a fever to follow, so I took my temperature to establish a baseline of sorts (it was something like 97.3 but I knew it wouldn’t stay there for long) and got under the covers to get warm. I did some deep breathing to try to get my body to stop shaking. I called Anna (she was at the gym) to ask her to get some Tylenol on her way home (I thought we had some but couldn’t find it anywhere). Then I called the medical exchange to tell them what was going on, and they said that the doctor who was on call that night would call me back.

The doctor called a few minutes later. I explained that I had AML, was a patient of Dr. Tucker’s, and had just begun my second round of consolidation chemo that morning. I described my symptoms and asked whether I should go ahead with my home dose—I needed to take my Kytril around 7:30 so I could start the chemo going at 8:30. He was apparently surprised by that: “How do you get a dose at home?” he asked, and I told him that they sent me home with the pump and IV already hooked up to my port and made a crack about learning something new every day. He said the chills (which had subsided by then) were probably a side-effect of the cyterabine; he said that happened about a third of the time. Anna came home with the Tylenol; I took a couple and stayed in bed while she cooked a beautiful dinner of Dover sole with steamed green beans and carrots. I didn’t feel particularly well but the food tasted really good. A few minutes after 7:00 I took my temperature again—it was up over 99 but still well below any danger point. Anna succeeded in extricating a Kytril from its insane packaging: for some reason the pharmacy had given us the Kytril in its original packaging, each small pill isolated on a card big enough to hold 10 or 12 of them and completely encased in hard plastic like the awful stuff they use for small electronic appliances such as headphones and electric shavers; I couldn’t manage it at all. (On Wednesday evening Anna did this for two pills so I could take one and stash the other in an empty Taurine jar so as not to have to go through that little process again on Friday night.) At 7:30 I took the pill and went back to bed. I turned on the TV and watched Monday night football for a while, then at 8:30 I opened the clamps on my IV line and got the pump going. Everything seemed OK, and I told Anna it would be fine for her to go down to Waterloo Records to pick up the Motown Remixed CD I had asked them to hold for her. She left, and I drifted off to sleep.

Anna came back about 9:40; I was sleepy and she was wide awake, so she went in to her purple-painted office in what used to be our guestroom to start working on the music for Wednesday night Bodychoir—she had switched with Elizabeth Rojas, whose mother and some other family members had arrived from New Orleans during the voluntary evacuation period over the weekend. At about 10:45 I woke up—maybe sensing that Anna had come into the room. I was having another fit of chills and shakes, considerably worse than the one earlier in the evening. there was pain in my thigh-bones and in my wrists and forefingers, and I could tell that I had a fever, too. So I took my temperature again (the talking thermometer I’d bought a week or so earlier from Independent Living Aids, thanks to a suggestion from Pam Scott, was coming in really handy). It was up at 101.5. I called the medical exchange again. When the doctor called back, I went through the story again, told him my symptoms, and (I think) asked him whether we should go to the Emergency Room, since Dr. Tucker had told us to raise the alarm if my temperature hit 100.5. He said he didn’t really see any need since it was probably a reaction to the cyterabine. I wanted to believe that, but I was scared and it didn’t make sense—I hadn’t reacted that way either in the hospital or during the first consolidation round at the beginning of the month. Anna said she thought maybe my port was infected, and we decided we should go to the ER anyway. So I got Dillon into harness, grabbed my Bookport so I’d have something to listen to next day if they admitted me to the hospital, and got a zippered sweatshirt out of the closet because I knew it would be cold in the hospital. And off we went. I called the exchange again, and when the doctor called back I told him we were on the way to the ER at St. David’s. He said something like “OK, they’ll check you out,” and rang off. I don’t know what I expected him to say, exactly, but I’d expected more interest than that.

Anna dropped me off at the Emergency Room door so I could go check in at the desk while she went to park. I knew as soon as I stepped inside that it was going to be a long night—there were voices everywhere, lots of them, all ages, and several different languages. I remembered what someone had told us about St. David’s and the ER providing health care for poor people from the community: people who don’t get health insurance on the job and can’t afford it on their own go to the ER for primary care. I checked in and the desk person helped me to a chair. Anna came in from the garage and we waited together; I tried calling the doctor again to see if he knew whether the lines might be any Shorter over at Seton; he said he had no idea, which is pretty much what I’d figured he’d say (he had no way to know otherwise unless he was actually over there), so I hung up and settled in to wait my turn. In a surprisingly short time the triage nurse called me in. He took my vital signs (temperature was still above 101) and said he’d get us into a room as soon as he could to wait for the ER doctor to come and see me. Meanwhile, the chemo had finally finished and the pump was beeping at us. The nurse found us a place where Anna could disconnect the pump and flush the port, and when she was done he took us back out into the waiting room to wait till a bed opened up; he said it would probably be less than an hour.

In a little while he came back and led us to a room. Another nurse came in and set up an IV going directly into a vein in my right hand—since there was concern about the possibility of my port’s being infected, they would need to draw blood from both the port and a vein in order to find out. She got the blood she needed and set up a saline drip, and then went off to deal with other patients. I still had pains in my bones, and I was starting to shake again, too, which was making the muscles in my neck and shoulders and back tighten up. I buzzed to ask for some pain medicine, and then waited. And waited. And waited. I got colder; I buzzed again and said I was still hurting and could also use a blanket. Then I waited some more. One of the techs brought in alight blanket, but I was still cold and the shakes were getting worse. Finally the nurse came in and gave me some morphine; it seemed to help for a little while, but the pain never really went away and the chills kept getting worse. Finally Anna went up to the fourth floor where I’d stayed during my two previous hospitalizations and borrowed a couple of blankets. Eventually the ER doctor came in and said we could go home—he’d discussed my symptoms with the oncologist on call, who had said again that the fever was probably a reaction to the cyterabine; my blood counts were all fine, and since they wouldn’t have even preliminary results from the blood cultures for a couple of days there was no reason to admit me. So we went home, both of us relieved that there really hadn’t been anything to worry about after all and glad that we had gone to find out. I think it was about 3:15 when we got home. I got ready for bed, and Anna brought me the various pills I needed—a couple of Tylenol, Valtrex (the anti-viral I’ve been on since I left the hospital), a Levaquin (a broad-spectrum antibiotic that I’d already started taking on Sunday evening), a Vicadin to ease the muscle pain from the long spell of shaking in the ER.

It took a while to get to sleep despite all the medication, and we woke up early for some reason too. The news from New Orleans and the Gulf Coast was bad. Whole towns on the Mississippi Coast had been obliterated, and in New Orleans the levees had broken in at least two places; the city was filling up with water, and the governor of Louisiana was saying that the communications network was completely down. No one knew anything except that it was bad and it was going to get worse.

I felt lousy all day Tuesday—probably fatigue from the long night in the ER and lack of sleep after that. A little before 3:30 that afternoon I acknowledged to myself that I wasn’t up to participating in the weekly conference call for editors of WCAG 2.0, and logged onto my email just long enough to notify my colleagues that I wouldn’t be there.
I went to lie down and turned on NPR. The news from New Orleans got worse and worse.

I felt much better on Wednesday. New Orleans was starting to sound like Baghdad, except that there were no troops. Communications were still down. The Superdome was filling up with people, but there was no air conditioning, no power, no food, and the toilets were already backing up. Over at the Cancer Center, the Infusion Room was much less crowded than it had been on Monday, and much quieter. I told Mickey what had happened on Monday night and how I’d felt on Tuesday; she got things going, but took my vital signs first and checked my temperature every hour, something she’d never done on my previous visits. Things seemed to be OK: my temperature never got above 98.6, and was mostly in the 97+ range. I left a little after 12:30, glad to have gotten through the morning OK but nervous about how it would go in the afternoon and during the evening. But everything was fine. Anna left for Body choir, having put together a beautiful mix of music that would be a kind of requiem for New Orleans. I took my Kytril at 7:30, and Jim Thatcher and Diana Seidel came over at 8:30 or so to keep me company—and to be on hand just in case things went south. They also brought cookies that Jim had baked, and some lovely orange sorbet with flakes of chocolate in it. Jim told me about his trip to Scotland (he’d gotten back on Sunday evening, I think) and we talked accessibility for a while. The conversation shifted to New Orleans and from there to politics; Diana read me an op-ed piece from the Times refuting the claims of Intelligent Design to equal status with evolutionary theory, and a little while later Jim read an op-ed by Gary Hart, Senator from Colorado and erstwhile Presidential candidate, calling upon his fellow Democrats to be strong in opposition to the Bush administration and its continuing efforts to wipe out the federal government’s capacity for response to the enormous challenges that face us as a nation even as they proclaim that help is on the way. Anna came home at about 11:15, Jim and Diana left, and a few minutes after 11:30 my pump sounded the alarm that the IV was finished; Anna disconnected me and flushed the port, and we went to bed. In New Orleans, people seeking refuge from the still rising waters were crowding into the Superdome by the thousands, and conditions were going downhill fast. People were shooting at the rescue helicopters. Maybe they were using the guns that had been looted earlier from a Wal-mart (that wonderful family-oriented store, with guns for people of all ages…)

I didn’t feel all that well on Thursday. I’d gotten to sleep without trouble on Wednesday night, but had awakened about 2:15 and from then on slept just intermittently. New Orleans was still in desperate shape with no relief in sight. Two colleagues came to the house at noon to discuss developing some training materials, and I had to tell them I’m not in a position to commit to anything that requires meeting firm deadlines—Monday night had shaken me, made me feel that my health and energy level just aren’t predictable enough, and there’s still a strong likelihood that I’ll end up back in the hospital at various points before I’m done with chemo. I hate having to say that, especially since it was the second time that day: I had emailed Gregg and Wendy earlier in the morning that I didn’t feel I should be leading a team right now, for the same reason: I just don’t believe I’ll be able to honor deadlines.

Late in the morning I had picked up the phone and heard the beep indicating that there was voicemail, so I dialed in to get the messages. There was just one, from 10:30 Wednesday night, and I almost deleted it without listening, because Anna had called at about that time and for a moment I thought she must have missed me once and left a message, then called again. Butt then I remembered that the phone had only rung once while I was sitting in the living room with Jim and Diana, and it was Anna saying she’d be home in an hour or less. So I listened to the message, and it was a Dr. Reyes calling from the Emergency Room at St. David’s to say that they had some preliminary results from the blood cultures that they wanted to discuss with me. That scared me, and I couldn’t bring myself to get up and say anything about it to Anna till I had some answers. So I called the ER and told the woman who answered the phone why I was calling. She put me on hold, of course, and then the charge nurse came on, and then she put me on hold, too. I waited, thinking panicky thoughts about blood tests revealing that the cancer had returned and spread, trying to make myself breathe in deeply and exhale slowly, till Dr. Gremmel came on the line. He was the doctor we’d seen when I first went to the ER back in June, and he’d been extremely kind and concerned. He said he remembered me “very well,” and he’d heard that I’d had a “rough hospitalization,” which struck me because I hadn’t quite thought of it that way—I had nothing else in my own experience to compare it to. Dr. Gremmel asked me if I’d had a port installed, and I said yes; he said that the preliminary results showed “staph epi,” which he explained as a kind of flora normally found on the skin. This might account for the fever I’d had on Monday. He would call Dr. Tucker and talk about what to do next. I told him that I’d been taking Levaquin, a broad-spectrum antibiotic, since Sunday evening, and that I hadn’t had any fevers since Tuesday. He said there was no need to come in to the hospital till I’d heard back—another surprise, since I hadn’t picked up on the fact that another trip to the ER might be called for. A few minutes later Dr. Gremmel called back to say he’d spoken to Jessica, Dr. Tucker’s nurse. Dr. Tucker was on vacation(another surprise), but she would show my test results, etc., to Tucker’s colleague, Dr. Youman, who was on his way to the office just then, and she would call me later in the afternoon to let me know what I should do.

The reason I had picked up the phone earlier was to call my father at his apartment in New York, to see if in fact he was there. I had gone into my room to lie down, at about 10:30 I think, when the phone rang. The call was for my father! I said he wasn’t there and started to hang up, then had the wit to ask who was calling. It was the American Airlines desk at the airport in Curacao. She said she had my dad’s suitcase and needed to know where to send it. I told her that my dad was already in Curacao, where he’d gone to join my brother, Peter, and Peter’s wife Nevah, and their daughter Hannah. But the lady on the phone said that she had Myles’ bag and that she was showing a completely unused ticket—he had apparently never gone to Curacao! I was mystified. He had been scheduled to leave the previous Friday from JFK. I had spoken to him on Thursday, and he was worried that because he had a 6:00 AM departure he would have to get up in the middle of the night to get a taxi out to the airport. I had been wondering if his flight would be canceled or delayed, because Hurricane Katrina was bearing down on Miami/Ft. Lauderdale, but I didn’t say anything to him because I figured he knew that as well as I did and that he’d call the airline to find out what was happening. And I assumed he’d call me next day if there were any problems. When I didn’t hear from him, I assumed he’d gotten safely off the ground, though I thought he might get caught in Miami and have to spend a night there. But then my brother had called using a cell phone he’d rented in Curacao—he was at the airport and Myles hadn’t shown up as expected. Did I know where he was? I didn’t, of course, so I called the airline and begged for information. Eventually they told me that his flight had been canceled, and he had been rebooked on a flight leaving the next day (Saturday the 27th) at a much more reasonable hour. That was when they had added my phone number to his record, and that was why they were calling me, looking for him and looking for instructions about what to do with his suitcase. I gave the woman in Curacao both my brother’s cell phone number there and my father’s phone number in New York—he had originally booked the reservation through his travel agent in Buffalo and that was the number they had been using, both in trying to alert him that the original flight on the 26th had been canceled and now, in trying to find out where to send his bag. Then I called my dad in New York, and there he was, safely ensconced in his apartment, having just told the woman in Curacao how to get his suitcase to him. He hadn’t gone to Curacao after all—there had been further delays on Saturday that would have left him stranded in Miami without a hotel room and no way to get to Curacao till late Sunday. He’d have been exhausted by the time he got there, and it would have taken him a couple of days to recover enough energy to get oriented and start enjoying himself. By then it would have been almost time to come home, so he decided it just wasn’t worth the effort and stayed home. So at least that mystery was solved.

Jessica hadn’t called me from the Cancer Center by 3:00, so I figured that whatever was going on with those test results wasn’t an emergency, and I dialed in for the weekly conference call about the Web Content Accessibility Guidelines 2.0. About three quarters of the way into the call Anna came in and whispered to me that Jessica wouldn’t be able to reach me since I had been tying up the house line for the past hour and a half; she offered to call for me, and I took her up on it. She came back a few minutes later to tell me that I was now scheduled to see Dr. Youman at 9:15 Friday morning, preceded by a blood test, and that I’d begin chemo after the appointment was over. I went back to the conference call for the remaining 20 minutes, then fed Dillon and Utah (Ledia’s dog, who’s been staying with us). I took Dillon out front to relieve him, and while I was standing there, getting tired in the heat while he sniffed around, it occurred to me that however upsetting the whole week had been, however leukemia has turned our life inside-out, I still have my house and that my city is still here, too. No matter how much I listen to the news and the increasingly desperate and angry voices from New Orleans and the rest of the Gulf—voices not only of residents awaiting rescue, or at least the delivery of food and water, but also of the reporters covering or trying to cover the story, who had become increasingly incredulous and finally enraged over the apparently total abdication of responsibility by city, state, and federal government as the city descended deeper into chaos—I couldn’t imagine what was really happening to the people there. But I knew what would have happened to me if I’d been in the hospital getting chemo and antibiotics and antivirals and transfusions when the power failed and the water ran out. I can’t get that out of my mind

Those dark thoughts were still with me on Friday morning as we drove over to the Cancer Center. The lab tech drew blood for both the usual CBC and a blood-chemistry panel, and then I went in to see Dr. Youman. He didn’t know me, of course (I had heard his name from reading Lance Armstrong’s It’s Not About the Bike, and from Jessica’s voicemail greeting because she’s the team nurse for both Tucker and Youman, but hadn’t yet met him). He was going through my chart and the reports from the hospital, trying to piece together the history from the cryptic notes in the record, and Anna and I tried to fill in the gaps. He unnerved me by raising the possibility that I’d have to go in to the hospital to have my PortOCath removed and replaced if the fevers came back, but when I told him I’d been fever-free since Tuesday afternoon he said maybe the Levaquin was taking care of it. We’d see how things went over the Labor Day weekend, and I should see Dr. Tucker on Tuesday. I pointed out that Tucker doesn’t work at that location on Tuesdays, and in any case I’m already scheduled to see him on Wednesday morning, so we left it at that, with instructions to call the exchange and/or to go to the ER if things got bad in the interim. Then I went to the Infusion Room for my chemo, relieved that I didn’t have to go to the hospital right away, unsettled by the fact that Tucker wasn’t around, and, like Anna, increasingly unhappy about how the doctor on call had responded on Monday night when I called the medical exchange. I was also not happy about the fact that chemo would start so late—it would mean staying up late that night, since I wouldn’t be able to start the home dose before 10:00, which would mean the IV would go dry at 1:00 AM. The chemo itself went fine, as did the home dose that night, when I enjoyed the chance to talk with Janis Bergman-Carton for the evening, getting caught up on the saga of their home renovations and how Jacqui and Rebecca are doing. But when Anna came home and it was time to disconnect the IV pump, we discovered that the nurse who’d been covering for Mickey in the Infusion Room that day hadn’t included the supplies we were used to finding in the fanny pack—there were no rubber gloves to protect Anna’s hands from accidental spillage of the corrosive chemo liquid, no alcohol swabs to wipe down the port before injecting saline followed by Heparin. I felt stranded. But at least I wasn’t clinging to a rooftop or huddled in some fetid, stinking corner of the Convention Center in New Orleans, and at least I wasn’t counting on the government.

Update, Monday, September 5. I’m doing OK—still no fevers, though I can tell my hemoglobin count must be coming down. And email just came to let us know that Liz Cullingford’s mother, Margie Butler, died today at her home in England. She was 97. She was a battleaxe who lived a long, full ife, and her death comes as no surprise. But I’m not ready to let go of anyone today, and the news makes me sad.