Wednesday, October 19, 2005

The Book of Life

My back was hurting really badly by the time I went to bed Monday night. Deborah Hay and Rino Pizzi had come over for dinner that evening—we had actually been scheduled to go to Deborah’s, but since my neutrophils were down to 100 Deborah had instead brought the ingredients and cooked a wonderful meal in our kitchen, halibut with red onions and orange slices and other tasty things, plus yams, all preceded by flatbread and two cheeses, something from Switzerland and a Shropshire that I really enjoyed.

I felt like I got more distracted as the evening went on. My back had started bothering me around 3:00 that afternoon—no big deal at first, just a slight achiness in my lower back that worsened a little if I raised an arm above my head. I assumed I’d overdone it on my walk with Dillon in the morning—I’d pushed it a bit, going all the way down to where Duval is joined by San Jacinto, then turning around and walking back up the hill without pausing to rest. I’ve had back trouble before, more times than I care to count, and since I haven’t been exercising at all till very recently I wasn’t all that surprised. I took some Tylenol and tried not to think about it. The pain grew worse as I sat at the table, and I kept shifting in my chair, trying to find a comfortable spot. I was worried that my discomfort was obvious, and I was afraid it would be misunderstood—I didn’t want to say anything about it because I was afraid that Deborah and Rino would take it as a signal that they should leave, and I didn’t want them to go. So I sat and squirmed instead, and tried to hold up at least some part of the conversation.

After they left I took Dillon out front to relieve himself, then came in and took a couple of Vicatin, which I hadn’t needed after Dr. Fleming removed my PortOCath (on the 30th, I think). Then I went to bed. My lower back was throbbing, keeping pace with my pulse. It didn’t feel like any back pain I’d ever had before—previous episodes had been one intense, breathtaking, immobilizing spasm, with after-effects lasting for days afterwards. This time the pain was right in the middle of my back, along the spine—not on one side or the other as it had been in the past. And there was the throbbing. I tried giving myself a backrub, which didn’t help much. Then I went and made myself an icepack, which, together with the Vicatin, did enough good so that I was able to sleep for a couple of hours. I woke up again just before 2:00. The Vicatin must have worn off, because the throbbing pain was still there; if anything, it felt even worse after I’d been to the bathroom and gotten back into bed. I took two more Vicatin and dosed off again after a while, but the sleep only lasted till 3:30 this time and that was it for the night. Somewhere in there I called the Medical Exchange. The call-taker told me that Dr. Tucker had “signed off” till 7:00 and offered to page the doctor who was on call that night. But it was the same doctor we’d had a bad experience with previously, so I said “No, thanks,” and decided to wait till after 7:00 when I could check with Dr. Tucker.

Dr. Tucker called me back at about 7:30, concern in his voice as he asked me what was going on. I told him about the steady, throbbing pain in the middle of my back, and to my utter surprise he said cheerfully, “Oh, that’s probably a good sign!” and then went on to explain that it was probably the Neulasta shot he’d ordered the previous Thursday. He figured it was stimulating my bone marrow, which in turn was busy “proliferating.” He said I should come in to the Cancer Center for a CBC—he’d bet my neutrophil count would be way up.

This was a complete surprise. The Neulasta ad on TV acknowledges that the drug can cause “mild to moderate bone pain,” but it hadn’t occurred to me that the pain might come several days after the shot had been administered. But it made sense: the more I moved through the morning routine—brushing my teeth, washing up without getting my PICC line wet, getting dressed, feeding Dillon, taking him out—the more the pain seemed to be subsiding. There was still a slight throbbing, but it didn’t really hurt—and if this had been the typical muscle-spasm I’d still have been in agony, with aftershocks coming every time I made a wrong move.

So off we went to the Cancer Center for a blood test. By the time I got there Tucker had talked to Penny, the triage nurse, to tell her that he wanted me to see his PA (Physician’s Assistant), Robert Kerrick, to rule out anything else that might be a source of the back pain. We waited maybe an hour and a half—he was working us in to an already full schedule. He was methodical and thorough, prompting me to describe the pain I’d experienced, offering various descriptions and asking if it had been like this one or that one, etc. In each case my answer was no, and I began to get anxious about the fact that my pain wasn’t matching up to any of those descriptions. He asked me to lie back on the examining table, then pressed and prodded different parts of my torso. No pain there. Finally he was satisfied, and said it probably was theNeulasta—my neutrophil count had jumped dramatically overnight, from a very low 100 on Monday morning to a much better 1800 24 hours later. No wonder my back had been hurting! So the pain had been a good sign. But the picture wasn’t quite perfect—my platelets were down to 13, despite a transfusion on Friday, when I’d received a unit of red blood cells and two units of platelets. So, after a quick telephone conversation between Robert and Dr. Tucker and a couple of calls from Penny to the hospital to set things up, we were off to St. David’s again.
We’re finally beginning to establish a reasonably smooth routine for all this. St. David’s set up a recurring account for me after the last fiasco with admissions, so this time I went straight to Day Recovery. They drew blood for the type and cross (necessary to do it again since I’d had an allergic reaction during the platelet transfusion last Friday), then took a chest x-ray to make sure my PICC line hadn’t migrated anywhere (Dr. Tucker was annoyed that they’d done this—he told me when I saw him on Wednesday that he’d asked them not to do it anymore, since it was really only necessary when the PICC line was brand new). Then Anna and Diane picked me up at the front door and brought me home to wait until the “blood products” actually arrived at Day Recovery. Someone from the Blood Bank called a couple of hours later to say the platelets were there, so Anna drove me back over to the hospital, and a volunteer at the front desk guided me back to Day Recovery. Once again Helen, the nurse, put down some warm blankets for Dillon, who curled up tight and went to sleep. Another nurse, Michael, administered the pre-meds—a lower dose of Benadryl than I’d had on Friday, a higher dose of Solumedrol, and a little Ativan (an anti-anxiety drug) as well. Then they started the platelets on a slow drip that would take a full hour (platelets usually go more quickly than that, but again they wanted to slow things down to avoid the reactions I’d had previously). The precautions seemed to work: I did get one big hive on my forearm, but nothing else, and then it was done. I was tired, though—not sure whether it was the Benadryl (which doesn’t usually make me sleepy, and which had apparently made me anxious back on Friday when I’d received a significantly higher dose) or the Ativan or something else, but in any event I napped for the rest of the afternoon and went to bed early as well.

I overdid it on Thursday. I felt good when I got up that morning, and I was delighted that I had no medical activities scheduled at all—no trip to the Cancer Center, no trip to the hospital. I read some email and wrote up some notes for Bill Holloway and Er-xin Lee about some of the issues they’d encountered during their work on our readability project. Then I responded to a list of detailed questions about one of the Web Content Accessibility Guidelines that was slated for discussion on the conference call that afternoon. Anna asked me to join her and Diane for lunch at Fino (it was Diane’s birthday), and of course I couldn’t resist. It was a beautiful day and we sat outside to eat, enjoying the breezes and the food. When we got home I went back into my email, where I saw that both Bill and Er-xin had responded to the notes I’d sent in the morning, so I answered their questions as best I could and then pulled up two or three more questionnaires about the Guidelines. The WCAG conference call started at 3:00 and was scheduled to go till 5:00, but when we got to 5:00 the end was nowhere in sight and I felt myself getting increasingly tired. I thought my forehead was getting warm, too, but I ignored these signals and stayed on the call till we finished 35 minutes later. Then I went to lie down and rest for a while before going over to the home of Judith Sokolow and George La Salle for a Yom Kippur break-fast.

It was a small group and a pleasant evening. There were three other couples besides me and Anna and George and Judith: Norm and Dinah Chenvin, Elizabeth and Kerry (neighbors of Judith and George), and Judith’s older brother Les and his girlfriend, Sue, who had come down from Hartford and Philadelphia, respectively. Except for Kerry and Elizabeth, we’ve all known each other for a long time—Anna and Judith were housemates at Sarah Lawrence, and I met Judith the same night I met Anna back in 1982, at Bill Nemir’s Christmas party; Judith had introduced us to Norm and Dinah (who is Judith’s cousin), and I’ve met Les a number of times over the years when he’s come to visit. Judith had gone to a lot of trouble over the meal, making fish and kugel and knishes and vegetables and salad and probably something else I’m forgetting now: Les had made a honey-cake and Elizabeth had brought a chocolate flan, so dessert was terrific and plentiful too. Judith treated the occasion as a kind of combination Rosh Hashanah/Yom Kippur, so we began with the apples slices and honey that were my favorite part of Rosh Hashanah when I was a kid. She also brought out a small booklet she had originally created for some Jewish residents at Marbridge Farms, a facility for adults with developmental disabilities, and we went around the table Seder-style, with each person reading a paragraph. In it a phrase was repeated several times. It was a prayer, one I’d said myself in the past without ever hearing it. It took my breath away: Let my name be inscribed in the Book of Life for another year. It surprised me each time it came up, since I couldn’t see the text, so I found myself saying it over to myself as the reading moved on. Let my name be inscribed in the Book of Life for another year. Please. Saying it to myself and for myself, I thought too of how old that prayer must be, and how simple the request it makes, and how very short and how very fragile life had been in the days when that prayer first entered into the ritual, and how fragile and tenuous it is now. It is a wonder any of us are here at all. Certainly it’s a wonder that I am. Deborah and I talked about this for a few minutes when she called on Saturday to say good-bye before heading out of town till December. If you’re reading this, Judith, thank you.

I woke up on Friday morning with a low-grade fever, 99.1. I mentioned it when I went to the Cancer Center for a CBC that morning, but no one seemed especially concerned. By late afternoon my temperature was up to 100.1, so I called Estee to ask her to ask Dr. Tucker if I should start taking Levaquin again. She called back a while later and said I shouldn’t do anything or take anything—my neutrophils were fine and I’d be OK. So I just took some Tylenol and drank lots of water. But by Saturday evening my temperature was up to 100.5, the danger threshold—Dr. Tucker had often told me I should go to the hospital if my temperature rose that high, and Penny had told me on Friday that I should be sure to call if it rose that far. So I called the Medical Exchange and told my story to the doctor on call, who offered to give me a prescription for Levaquin; I thought I had enough to get through the weekend, so I told him that wouldn’t be necessary and hung up. Anna was relieved and so was I, and on Sunday I felt much better—so much so that I was able to put in pretty much a full day working on the Web Content Accessibility Guidelines in preparation for this week’s meeting (about which more later). I had discovered on Saturday night that I only had one Levaquin, so even though I was feeling so much better on Sunday afternoon I called the Exchange again and took the doctor up on his offer to call a prescription in to the pharmacy (actually it was a different doctor, so I had to repeat the story first). It turned out, when I went back to the Cancer Center for another CBC on Monday morning, that Dr. Tucker really hadn’t wanted me to have the Levaquin—he had wanted to wait and see how the fever would play out, and then do whatever might be necessary to track it down if it didn’t go away on its own. But I had missed that intent somehow. I can be sorry about that from a sort of detached academic standpoint, but I can’t really say I’m sorry: Dr. Tucker said to go ahead and finish up the prescription I got over the weekend, and I feel a hell of a lot better. I’ve been participating by phone in that WCAG meeting (it’s in Seattle this time), and am actually enjoying myself. It’s good to be able to work a couple of full days in a row.  I couldn’t have done it a month ago, or even a week ago, and I’ll have to build to it again after chemo next week (the last round!). I wouldn’t even have thought to try. It’s as if my body knew how much it could sustain and only allowed me to imagine doing as much as I could manage (or perhaps just a little more).


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