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).

A walk with Dillon

It’s a beautiful morning. It was in the mid-50s when we woke up, and by now it’s in the low- or mid-70s. Sun’s out, and it’s very bright; there’s a light breeze, and the air smells good. Dillon and I just got back from a short walk. This is the third morning in a row we’ve done this: yesterday and Thursday we went around the block, first walking east to Duval, then turning south for a block, then west onto E. 34th, north onto Tom Green, and east again onto E. 35th Street and up to the house in the middle of the block. Takes nine or ten minutes. It was so gorgeous out this morning that I wanted to do something a little different, extend the walk a little. So instead of turning onto E. 34th St. I told Dillon to keep going; we crossed 34th and went down to 32d. Each block is so different. From 34th to 33d is a long block. At the southwest corner of 34th and Duval there are hedges growing out over the edge of the sidewalk just as you come up to the top of the curb cut, where the nubbly part of the wheelchair ramp begins; Dillon stops and waits for me to find the branches with my outer arm, then moves forward. In a minute he stops again to let me find the raised part of the sidewalk with my foot, and does so again a few steps further on. A few yards later we have to stop for an overhead branch hanging directly in my path; there are others just to the east of that one, so Dillon waits for me to tell him what to do. I duck low and tell him to go forward, and we continue on to the end of the block. It smells like fall. We pause at the corner of 33d so I can listen for traffic; there isn’t any, so we cross. This next block has a completely different climate. There are plantings on either side of the sidewalk—trees and bushes and ferns, some at knee- or thigh-level, others at eye-level, each a decision-point for Dillon and for me. He sort of goes on tiptoe through this part. We haven’t walked this way for a long time, and he isn’t sure I’ll remember, so he takes it slowly, not quite trusting me to dance with him as easily as I used to. We come out the other side, and in a few steps we’re at the downcurb into the alley that bisects the block running east and west. Unlike the alley that runs along the east side of our house, this one is well paved, with real curbs on either side (so much for people in wheelchairs), but it’s still an alley as far as I know. It’s not as interesting on the other side—just a straight shot to the corner past ordinary lawns. There’s one small patch of sidewalk where someone has put in a flagstone walkway; its slightly uneven, so Dillon stops to remind me. The next block isn’t just a different climate again, it’s a different world. The entire block from 33d down to 32d is occupied by one huge house on a huge lot, with a brick-and-ironwork wall/fence abutting the sidewalk. And it’s on a small hill. There’s no curb cut (again) on the southwest corner, and there are two more steps going up to the sidewalk after you step up on the curb; the first one’s at a slightly awkward distance from the corner, about a step and a half; even knowing it’s there, and even with Dillon leading the way, it’s awkward (the other side of the street is even worse—it’s a good deal hillier, and there’s no sidewalk at all). Behind the big fence are two dogs that set up a frenzied barking as Dillon comes up the stairs and we stop for him to let me feel the branches coming out over the sidewalk. One of the dogs sounds pretty big and has a big bark and a low growl; the other one sounds smaller, with a higher-pitched bark and more frantic running back and forth. Both of them follow us all the way past the house, until they come to the far corner of their yard. I had been expecting them so wasn’t as upset or annoyed as I sometimes get when they surprise me on the way to or from campus. But of course Dillon’s on alert, trying to keep an eye on them and remember that he’s supposed to be guiding me, too. We go past the wheelchair ramp that leads to the bus stop for the #7 southbound, and get to the corner. There’s no real street here, though maybe there was once; it’s a sort of driveway/parking area. Capital Metro put in a wheelchair ramp here, too, a year and a half or two years ago. I check my watch; it’s been about 10 minutes since we left the house, and though I’m feeling good my breath is coming shorter and I figure this will make a good place to turn around and go home so I don’t run out of steam on the way back. So that’s what we do.

I love that walk. I’ve done it hundreds of times in the nearly seven years we’ve lived in this house. It’s my route to and from campus—down Duval to San Jacinto, then down San Jacinto to E. 24th Street and across to my office in the FA C. It’s a terrific walk: every block is different, with different smells, different textures underfoot, different patches of shade and light, different sounds. Some are lined with small private houses (some of which are occupied by students); there’s a big apartment complex or two, a pizza joint where students often sit drinking beer on the porch in the late afternoons as I head for home, and there’s a Laundromat, a Subway franchise, and a bar/burger joint, the Posse East, that’s been there forever (There used to be a Posse West, too, around 24th and Rio Grande, but that’s been gone for years). And that’s just the stuff north of campus.

Not only is each block different, but each trip is different too. You can’t step in the same river twice, as the saying goes, and evidently you can’t quite walk on the same sidewalk twice, either. Because Dillon is so beautifully trained to stop or at least slow down for changes in elevation, overhanging branches, etc.—anything that might trip me up-- a shift of just a few inches to right or left of where we walked last time can make a difference in what he encounters—a bit of sidewalk angling up over a tree root, a branch coming down, a gate open in a fence.

It’s been a long, long time since we did that walk, or even that part of it. It felt wonderful, like a rediscovery of my neighborhood and a re-expansion of my world. Dillon seemed happy and proud. He loves doing guideword, and I haven’t given him nearly enough of it over the past three months, and even before that, because Anna had been dropping me off at the office a lot after we’d gone out for breakfast. So there was a lilt in Dillon’s step, too, and a definite wag in the tail when we got back to the house and I told him what a great dog he was.

Writing this, I’m reminded of how liberated and excited I was when I first went out to San Rafael back in 1998 (Tuesday will be the seventh anniversary of the day I left for Guide Dogs, I realize!) to get the dog who turned out to be Dillon. On my first walks with Dillon I was startled to recognize how much I had slowed down in the preceding months and years, as I wrote in the Dillon Chronicles. Today’s walk prompts me to think—not for the first time—how I’ve allowed my world to shrink in the months since I became ill.

For the 28 days I spent at St. David’s this past June and July, the world shrank for me to the compass of my room, with occasional expansions out into the corridors for short “exercise” walks or rides on a gurney down to the radiology floor for x-rays and CT scans and ultrasound. The same thing had happened in Buffalo two years earlier, in the hospital room where my mother died. There was nothing but that room. And that was somehow comforting—I couldn’t have handled a bigger world on either occasion. And in recent months, I guess I haven’t been ready for a world much larger than the house and the distance between here and the Cancer Center (about a mile to the west) and St. David’s (about the same distance to the east). There have been a few forays beyond these spaces—a drive out FM 222 one evening to have dinner at Siena, on the verge of the Hill country; a few trips to Bodychoir and Artz Rib House, both in South Austin; and a few others. But not many. Partly it was the weather—it’s so damn hot here in the summer (record-breakingly so in the last week or ten days of September, which is technically not summer at all) that the idea of going out into it was just less appealing than ever. But it wasn’t just the heat.

It’s the fear, the fear that I talked about the other day. Fear of not being able to handle it, fear of becoming exhausted and not being able to get to my bed and lie down when I need or want to. Fear of running into someone who has a cold or some other relatively innocuous but infectious thing at a moment when my immune system is seriously compromised by the chemo; fear of having to go back to the hospital. And fear of finding the hidden places in my life, the lurking questions. What are my priorities now? Which of the many things I did before I got sick do I still want to do? Which of them can I do? What if I don’t want to do them? What if there’s some part of me that likes this slowed-down life? What if there’s some part of me that likes being sick, that hides behind it, uses it for a shield?

Well, no. There are many things that matter, things I want badly to do. I want to help bring the Web Content Accessibility Guidelines to publication, and I want to stay with the project after that to do what I can in the effort to get them adopted as the international standard they’re designed to be. I want to grow the Accessibility Institute into larger, more active research group that’s a major force in the drive toward making online information accessible to everyone. I want to dance with my friends at Bodychoir, and I want to do another piece with Allison Orr and Yacov Sharir, continuing and expanding the work we did with Sextet two years ago. I want to travel with Anna, not just to Spain for the Accessibility + Usability conference where I’m due to speak next month, but to France and Italy and Greece and Mexico. I want to go to Cape Cod and stay there for a whole summer, alternating between writing and going to the beach. And I want to sit here, in my pleasant study in my comfortable house, listening to the birds outside and to Anna putting together the music for tomorrow’s Bodychoir. I want it all, and maybe that’s what I’m afraid of, since of course I can’t have it all. I’m afraid of becoming complicit in the shrinking of my world, to protect myself from the sadness of knowing that I can’t have everything I can imagine wanting. This of course isn’t about leukemia, though maybe the leukemia and the process of treating it makes it more real than I’ve allowed it to be before. It’s about being human and about being alive, and about loving it and not wanting to let it go, about being afraid that I won’t know how to take responsibility for my own life and live it as fully as I can, however long or short it may be.

Son of a bitch. But for today I’ll take what I’ve got—a beautiful day, the kind we’re supposed to get in the fall. No trips to the hospital today (went in for yet another transfusion yesterday, the second in three days, but that was yesterday), and only a quick trip to the Cancer Center for a CBC this morning, and that’s done with: hemoglobin up (to 10.7) and platelets up too (to 44—they were down to a mere 4 yesterday, dangerously low, before they gave me two units of platelets along with a unit of red cells; never mind that I had another allergic reaction). It’s lunch time. We’ve got friends coming for dinner tonight, and we’ve got dinner plans for tomorrow and Monday, too. I’m full.

Going with the flow, hitting a wall

It’s a little after 9:00 on Saturday morning. I’m in the Infusion Room, cyterabine flowing through the new PICC line in my left arm; the PortOCath is gone. The joint’s jumpin’. Across the room to my left someone’s watching TV; sounds liken adventure movie of some sort, lots of dramatic music. Or maybe it’s just a commercial. In the chair to my immediate left is an art teacher from a local high school who says she’s been teaching for over 30 years and that this thing is not going to get her. In the chairs to my right are a couple of other women; one sounds young; she tells the nurse she has a 19-month-old baby who’s doing fine. The woman to her right sounds much older, maybe in her 70s, but it’s hard to tell—cancer and chemo make people so tired, and their voices can sound older than they are. In the time it’s taken me to write this the teacher has gotten whatever medication she came for and left. Nurses talk to patients and each other, explaining procedures, taking measurements, checking in. by the time I go to bed tonight I’ll be done with the third round of consolidation chemo, though not with the aftermath, the ebb and flow of my blood counts.

It’s been another difficult week. Starting chemo on Tuesday didn’t help—I’ve been confused about what day it was ever since—but that’s just a small piece of the general chaos. Peg Syverson came over for dinner on Tuesday night, but by the time she got there I was feeling crummy and lying down, and although I got up and joined her and Anna at the table for dinner I didn’t have much of an appetite and excused myself after a while to go lie down again. After a bit Anna and Peg came to join me, bearing a bowl of chocolate ice cream with berries. I couldn’t eat much of that, either. Anna prompted me to take my temperature, and I got a shock: it had spiked to 102.9. After a couple of calls to the Medical Exchange we were off to the Emergency Room at St. David’s again with instructions for them to draw a couple of blood cultures and send me home; I was to come over to the Cancer Center in the morning and we’d take it from there. We got home a little after 12:30, with my temperature down to 99.5; I took my various pills and went to bed.

My temperature was back up to 101.2 when I woke up on Wednesday morning, and I still felt bad. At 8:30 I called Tucker’s nurse, Estee, and set up an appointment, but she called back half an hour later and told me that Tucker said it would be better for me to stay home and rest and come in for my chemo on Thursday at the usual time. So that’s what I did. I felt too wiped out to do anything else, and was actually grateful I didn’t have to go anywhere. I felt guilty about missing the conference call for my team to work on the accessibility guidelines, but I knew I couldn’t handle it.  I drifted in and out of sleep all morning as my temperature gradually came down By mid-afternoon I felt well enough to make a couple of short phone calls, but that was pretty much it for the day.

Thursday was one of the most difficult, stressful days I can remember since I got out of the hospital—two months ago now. I was scheduled for chemo at 8:30, and I dragged myself out of bed, still feeling week and dispirited, to take my shower and feed Dillon so Anna and I could go out to breakfast on our way over to the Cancer Center. Various people asked me how I was doing—Cheryl, the sweet-natured phlebotomist who drew blood for my CBC that morning; Micky, my Infusion nurse; several others—and I told them what had happened on Tuesday and that I was still feeling badly. Micky got the Kytril going and hooked up the cyterabine when that was done. An hour or so into it I was feeling better. The strain was almost gone from my voice, and I wasn’t feeling nearly as tired as I had when we got there. The Cephadril (sp?) that I’d started taking on Tuesday night must have been working (Dr. Tucker had written the prescription on Friday, with instructions to take it if my temperature went above 102).
Then the confusion set in. Apparently no one had spotted an email from Dr. Tucker, who was down at the South Austin clinic that day, with instructions to stop using my PortOCath because the preliminary results of the blood cultures from Tuesday night showed that the port was infected: the chemo should be administered peripherally. But it was too late for that. Hasty arrangements were made, and I was taken downstairs to Austin Radiological Associates, this time to have a PICC line installed—a Peripherally Installed Central Catheter like the one I’d had during my hospital stay in June and July.  A doctor from Austin Radiological could also do the minor surgery needed to remove the infected port—I would have to come in the next morning, though, because they planned to put me under sedation and couldn’t do it that afternoon because I had just eaten lunch. Four hours had to elapse before they could sedate me and it would almost be closing time by then, so we’d have to wait till the next day. That was fine with me anyway.
Meanwhile, downstairs in the Austin Radiological waiting room, Anna called my cell
phone; I heard the ring, but was evidently in a semi-dead spot and couldn’t actually connect with her when I answered. I tried to call her a couple of times but couldn’t get service. I had Dillon lead me over to the reception desk so I could ask for a land line. The receptionist came around the counter, led me to a chair, and gave me a phone to use. I called Anna to let her know what was going on and what the plans were. When I told her about the plans for having the PortOCath surgically removed the next morning, her upbringing as a surgeon’s daughter came to the fore. She asked me for the name of the surgeon who would do the actual work, and when I couldn’t tell her she said to wait until we could find out more. She had very much liked Dr. Fleming, the surgeon who had implanted the PortOCath in late July—we had both liked him—and it would be better if he could do it. But I had called Fleming’s office before going downstairs to have the PICC line installed, and his nurse had told me  that  Dr. Fleming was out of the country—in Nicaragua along with a doctor from the Cancer Center—and wouldn’t be back until Friday. I      assumed this meant that Fleming wouldn’t be back in the office till Monday., Dr. So I went back upstairs, and my new PICC line was used for the first time, to give me a dose of Vancomycin, an antibiotic that I’d been given in the hospital and which may have caused the red rash that bloomed over my entire body during the first weeks of my hospitalization (Red Man Syndrome, it’s called, but I didn’t hear that name till much later—from nurses, not from doctors, interestingly enough).

Anna came to the Infusion Room to talk with me and the various nurses about what we were going to do and who was going to remove the PortOCath. Rightly, she was adamant that Fleming should perform the procedure.
Finally, after much scurrying back and forth, we agreed that Estee, Dr. Tucker’s nurse, would schedule the surgery with Dr Fleming for the earliest possible date next week as well as canceling the appointment with Austin Radiological which had already been set for Friday morning. Meanwhile, it had also been decided to switch me from Vancomycin to Cubicin. Cubicin would be better—especially because it required only one dose a day rather than the two doses needed for Vancomycin. Problem was that the Cancer Center didn’t yet have Cubicin in the pharmacy—it was very new, apparently—so they had also arranged for me to go to another infusion room, Innovative Infusions. For a dose of Cubicin on Friday, Saturday, and Sunday; they would try to arrange to have Cubicin for me at the Cancer Center on Monday so I wouldn’t have to go to different places—I was scheduled to see Tucker at the Cancer Center on Monday afternoon.

But that evening I would need a second dose of Vancomycin, which couldn’t be started till after the evening dose of chemo was finished. That would be about 11:00, probably. So Micky quickly showed Anna how to switch me over from one drug to another and sent us home with two, count ‘em two, IV pumps. I lost it when we got home, just sat on the living room sofa with Anna and wept with frustration and rage and confusion and fear. I felt like a very old ball in an old fashioned pinball game—I’d been bounced and flipped and bounced again, and I was tired and confused and sore. I think Anna felt pretty much the same way. Neither of us could stand the idea of cooking, so for solace we took ourselves up the street to Asti, the wonderful little trattoria where they know us way too well. I wanted to wait till we’d ordered to take my Kytril, so that didn’t happen till about 7:30. And that in turn meant that I didn’t get the chemo started till about 8:50, when we’d come home from our lovely dinner, and that meant that the chemo wasn’t done till almost midnight. Anna had fallen asleep, and I woke her guiltily to ask her to switch me over to the Vancomycin. That was when we discovered that the PICC line was set up a little differently from the PortOCath—just enough to be confusing—and that the Vancomycin IV was connected to a different brand of pump than the one we were used to. So we forgot to open the clamps on the line, and the pump beeped angrily to let us know something was wrong. I pushed a button to shut it up. But of course I pushed the wrong button, and instead of stopping it kept beeping and displayed a cryptic message on its LCD screen: HIP, it said. So we got into the car and drove over to the Emergency Room for the second time in three days, to see if someone there could help us deal with the damn pump. But getting into the car wasn’t all that simple, either—earlier in the day something had scrunched the driver’s side door, and it wouldn’t open; so Anna had to get in on my side and climb over the center console into the driver’s seat, then reverse the process at the other end. We reached the hospital, and I went on in while Anna went to park. When I walked up to the desk the triage nurse said only, “Are you still having fever?” I explained the situation and showed him the PICC line. He gave me a quick explanation about how it should work, and I told Anna when she joined me in the waiting room a minute later. She made a few more attempts and got it working, so we headed for home and got into bed.

Side note, October 5th: My neutrophil count is dropping. It is not emotionally helpful that the radio and TV news have added the possibility of an avian flu pandemic and the global unpreparedness for it to their reports on hurricanes Katrina and Rita.

On Friday I was scheduled to go to Innovative Infusions for my first dose of Cubicin, the new antibiotic that only needed to be infused once a day and didn’t have the potential side-effects of Vancomycin
. When Anna and I got there, we discovered that the clinic—which turned out also to be known as Austin Infusions and Jefferson Street Infusions—was housed in a records-storage area in the back of the Jefferson Street Family Practice, where I’d briefly been a patient in the late 80s when we were living in that part of Austin and the building was on my bus route between campus and home. It was total chaos—a tiny room with several patients in an assortment of chairs and one harassed-sounding nurse, whose cell phone kept ringing as she was trying to get various IVs going. She got me hooked up, and about 10 minutes later my cell phone rang. It was Phyllis, Dr. Fleming’s nurse Fleming was in the office (evidently I had misunderstood what she had told me the day before). Could I possibly get there at say 2:00 or 2:30 so he could remove my PortOCath.  Sure I could. That was several hours away—lots of time to plan… But a question occurred to me: if he was going to do the surgery in his office, would he still be able to put me under sedation? I didn’t relish the idea of being awake for this—Lance Armstrong had described the removal of his port as a really painful experience, and I really really didn’t want that. No, Phyllis said, he would use a local anesthetic.  But it would be OK, she said: “Trust him, he really knows what he’s doing.” I hesitated a second, then said OK, remembering how I had liked him earlier and how confident both Anna and Dr. Tucker were of him. OK. I took a deep breath, exhaled, and sat back in my chair to finish the IV. My phone rang again. It was Fleming’s office again, but this time it was Karen in scheduling. Could I possibly come over there right away? He could work me in. Well, there was this little problem of an unfinished IV, but I would get there as soon as I could after it was finished. The IV finally finished, Anna came to pick me up, and off we trundled to Dr. Fleming’s office. This time, unlike July, I got precise and accurate instructions about which garage to park in and which office to go to, so that part was smooth.

Everything else was smooth, too. But of course “working me in” meant sitting and waiting while Fleming worked on other patients who’d been scheduled ahead of me, so it wasn’t until maybe 12:15 or 12:30 that I actually got into an examining/surgical room, and maybe another fifteen minutes after that before we got started.  Dr. Fleming explained in a calm, unhurried, and precise way what he was going to do. He understood that I was anxious about the local anesthetic, so he proposed “a little experiment”: he would inject a little numbing medicine (Lidocaine) in the area where he would be operating, and if I was OK with that he would go on and numb the rest of the area before removing the PortOCath. That sounded OK, and that’’s what happened. I felt no pain except for the initial prick of the needle with the local anesthetic, but I was aware somehow that he was making an incision in the skin just above my left breast, and a few minutes later I felt him tugging lifting something—presumably one of the two “lumens” belonging to the PortOCath—and heard or felt (I’m not sure which) him snipping, snipping. Presumably he was cutting the PortOCath away from whatever holds it in place. I felt a stronger tug, and exclaimed: “I felt that!” He immediately stopped and asked if I’d had any pain. “No,” I said, “just felt the tug.” That was OK, he explained—that was how he had to remove the PortOCath. I’d probably feel a couple of similar tugs. I did, and then he told me that the PortOCath had now been completely removed; the only thing left was to suture the wound (earlier he had explained that he couldn’t use self-absorbing sutures in the office, as he would have done had we been in the operating room at St. David’s; I’m not sure why). So he stitched me up, bandaged me, and we were on the way. I must say I’ve experienced no real pain—just a little soreness that evening and the next day. But I was still exhausted when we got home late that afternoon, and I’m sure Anna was, too.

The downside of the switch to Cubicin was that I would have to have infusions on four consecutive days. That meant trips to Innovative/ Austin/ Jefferson Infusions on Saturday afternoon and again on Sunday morning as well as on Monday afternoon (apparently it wasn’t that easy to get it over at the Cancer Center). Well, it turns out that the Jefferson Medical Building closes at 1:00 on Saturday afternoons. Apparently no one at the clinic knew that because no one at the clinic had ever done infusions on Saturday afternoons before. But now they had four of us scheduled. We went nuts for a while trying to get in, then finally someone with a key took pity on us and we followed him in to the elevator. When we got to the clinic the nurse we’d been expecting—the one from the day before, who’d said she’d be there—wasn’t there. Instead there was another woman, who seemed very competent but who was also clearly frustrated both because the place was so tiny and because she couldn’t find all the supplies she needed ready to hand. Eventually she found everything and got all of us connected to our IVs, and everything went fine from there. Sunday morning went more smoothly: Colleen, the nurse who would be working that morning had been my chemo nurse at the Cancer Center on Saturday, and she had done it often enough to know that the building would be closed and that she’d need to arrange to come down and let us in. She had actually had the foresight to tape a note to the front door giving us a number to call so she’d know to come down and get me.

On Monday I went to the Cancer Center for another CBC, then went back to the other clinic for my last dose of Cubicin. My blood counts were down. My neutrophils were still above 1000, but my platelets were down to 102 and my hemoglobin was down to 8.7. Dr. Tucker said he’d been talking with colleagues at M.D. Anderson and they’d agreed that it was safe to use drugs like Neupoegen (which boost white blood cell production) for patients in situations like mine—in remission, and exhibiting no problems. I liked that as a description of my general situation, but I double checked to be sure he hadn’t been having that conversation with M.D. Anderson because there was something about my case in particular that concerned him. No, he said, it was just a conversation about a situation that I happened to fit into. Fine. But he did want me to have a transfusion, so we got that set up for today (Wednesday).

Yesterday morning I had breakfast with Jim Thatcher and Jim Allan to talk accessibility, etc., and afterward Jim Allan drove me over to St. David’s so they could draw the blood sample needed to be sure that my blood is still B positive. That took about 15 minutes, I think, but there was an ominous note: Kerry, the young admissions clerk who had worked with me the last several times I’d been to St. David’s told me that this would be her last day—she was transferring to a different department. That meant that whoever checked me in this morning would probably be new, and I was sure that didn’t bode well.

I was right. Anna dropped me off at the hospital a few minutes before 8:00 this morning, but the woman at the main desk clearly didn’t pay a whit of attention to what I told her needed to happen next (I had registered the previous day; I just needed to check in and get someone to take me to the Day Recovery unit). So I cooled my heels in the waiting area for 20 minutes. Then I got up and asked loudly if I could be admitted so I could go ahead and get the transfusion I came for. The woman from the main desk came and told me I hadn’t been waiting that long, and we just had to do what we just had to do; I needed to wait. I fumed and waited. A few minutes later another woman came and took me over to her desk in Admissions. Thing seemed to be going along all right, if a bit slowly, until she said she was going to come around to my side of the desk, snip off the admissions bracelet I’d been given yesterday, and give me a new one. No one had ever done that before, I told her, even though I’d been doing this very same thing every couple of weeks for several months now. “Oh,” she said, and did it anyway. Then she guided me back to the Day Recovery unit.

Helen, the nurse who’d worked with me on a couple of previous visits, came out to get me and led me back to the room I’d been in last time, two weeks ago. Again she had a couple of heated blankets for Dillon to curl up on, and one for me to get down under once I got into bed. I handed her the instructions from Tucker, which called for a CBC prior to the transfusion. I told her I no longer had a PortOCath, that I had a new PICC line that had been installed last Thursday. She said they would have to do a chest x-ray before going any further, to make sure that the PICC line hadn’t become displaced in the meantime. I was stunned. What was that about? But it was hospital procedure. So I waited till the x-ray tech came in with her portable machine. Then we had to wait for the results to come back. All clear. So now we could do the CBC. That took about two minutes. Then more waiting for those results to come back and be faxed to Tucker in case he needed to change the instructions. The wait dragged on. Then Helen and Peter, another nurse, came in and said we were finally good to go.  Finally, they emphasized. What’s up? I asked, and they said I didn’t want to know. But of course I did, so they gave me the short version. The newbie admissions clerk had created a new account for me when she checked me in this morning—hence the snipping off of the old wristband and the placement of the new one. That in turn created a problem: I was now on a different account than the blood that had been ordered for me, which meant that they couldn’t give me the blood! Helen had spent a bunch of time on the phone and had finally gotten it straightened out (bless you, Helen). So now they could actually start the transfusion—a mere three hours after I’d arrived at the hospital.
Now that’s done. Tomorrow afternoon I go back to Dr. Fleming to have the stitches removed from my chest, and on Friday morning I get another CBC at the Cancer Center. There’s nothing else on the calendar, thank God (I mean nothing else medical). Anna’s in Cleveland on business (she’ll be back late tomorrow afternoon), and Evan Carton, my oldest friend in Austin, has generously agreed to come over and spend the night just in case something goes bump and I need a quick ride to the hospital. I’m sure that won’t happen, but I’m glad he’s coming anyway.
“With an illness like this, you just have to go with the flow,” Dr. Tucker said last Thursday evening. He had called to see how I was doing and to make sure, after all the “commotion” earlier in the day, that we had a shared understanding of what would happen over the next couple of days. He’s right, of course. But however good I may be at doing that, I had hit a wall that day—the “flow,” such as it was, had swept me right smack into it. Thursday was a really, really bad day, and since then I’ve felt that all my resiliency is gone. I blew up at the admissions clerk this morning, not just because I was furious with her for saying “Next time, you should let us know in advance that you’re coming in,” but because that snafu was the latest in an increasingly long string of misadventures and things gone awry, and my reserve of good humor was just plain empty. I’m sure it didn’t help that my red blood count was so low, either. I was still fuming as Helen got me settled in my room and when Peter came in to see how I was doing. The idea of the chest x-ray made me even crazier. But when they came in and told me the story about the bungled account setup at the admissions desk, I just started laughing. Somehow it flipped from something that was about to turn me into a raging lunatic into something that was just plain silly. It will be important for me to hang on to that sense of the absurd—I’m sure I’ll need it. But I also need to look hard at that wall inside myself that I’ve run into. It’s not just frustration. It’s fear, too. I’m not ready to look too hard at that right now, but I’ll have to.