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.


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