My own private weather channel
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.