The madding crowd
We threaded our way back through the crowd—all the people whose regular Monday appointments had been pushed back to Tuesday because of the Memorial Day holidy, plus all the people with Tuesday appoints—and took the elevator down to the third floor for the trek to Elevator G. For some reason the third-floor corridors are much less crowded than the first and second floors, so we’ve learned to use that for asmuch of the journey as possible. But Elevator G, which goes to the Radiation Treamtnt Center, doen’t go as high as 3, so we took Elevator E down to 1, maneuvered our way to Elevator G (for some reason getting to F means you’ve gone too far) and checked in at the Radiation Treatment desk. From there we had take the elevator down again, to the basement where the big radiation machines are, and make our way through another maze of hallways to Waiting Area F. We were over an hour late by that point, so of course we had to wait a bit, but it was nothing compared to the waiting upstairs in Fast Track. The student nurse, Sally, came to get me in a little while; I left Dillon and my various belongings (Bookport audio reader, general-purpose shoulder bag, hat) with Anna and went off on Sally’s arm. I lay don on the table, fitted my neck and head into the guides on the table, and raised me knees a little so Sally could slide a bolster underneath them for support. She and Thomas came them and fitted my mask thightly over my face (which has to be tilted upwards just a little, so the chin points forward; not sure why) and clamped it down. When they were sure my head was properly positioned, they went into the tech room (probably behind a whole lot of lead and other shielding). They did two “zaps” (There must be a technical term for this), each one soundling bit like a high speed printer, and that was that. They came out from behind their shield, unclamped the mask and raised it from my face, and gently helped me sit up. Then Sally handed me back my ID card (actually she tucked it into my shirt pocket while I was sitting up) and led me back to Anna and Dillon in the waiting area. Total elapsed time: about 7 minutes.
We agreed that the idea of getting a leisurely or decent lunch was now officially nil, so we stapped at the 24/7 Café on the first floor and Anna bought me a turkey sandwich, a yogurt parfait (Don’t do it!), and a bottle of water. I started in on the parfait and she took Dillon outside to pee—poor puppy, he had a cortisone shot last Thursday to relieve his terrible allergies (he was licking himself raw in some spots), and it’s made him want to drink a lot more water and pee a lot more than usual. When she cam back in we got back on Elevator A and went back up to the 8th floor, where the Leukemia Clinic is. By now it was 11:30, and our appointment with Dr. Giles had been for 10:45. No worries, though—they hadn’t even missed us. I think we got into the examining room about 12:00, and were amazed to think we might actually finish here in time to get to the final thing of the day, the lumbar puncture, on schedule at 1:30.
We had written down some questions on the form we fill out every week—are we still on tack to have the round of systemic chemo at home in Austin? How many more lumbar punctures/intrathecal chemo treatments will there be? When might there be another MRI to see the effects of the radiation treatment? When might the bone marrow process start? Mary Alma came in first and talked us through some of thesem and a few other questions we had about whether I should or could continue with the supplements I’d been taking since leaving the hospital last July (she wants to check the ingredients in Macro-force, but basically thinks there’s no problem for now). She confirmed that we could probably plan on going home next Thursday or Friday (the 8th or 9th), and suggested that we set up an appointment to see Dr. Tucker on Friday, with an eye to starting the chemo the following Monday. (Anna called to set that in motion.) Then Dr. Giles came in. As usual, he didn’t sit down. He’d heard from Mary Alma that I’d been to the gym and danced at Bodychoir-. He seemed both pleased and surprised that I’d been able to do those things—he’s somewhat mystified that I’m relatively asymptomatic, given what the MRI showed in my brain and the high percentage of blast cells in my spinal fluid when they did the first puncture. The results of the most recent puncture (last Thursday) were clearly “vastly improved” and going in the right direction; I’ll have another puncture and chemo does on Friday, and if that’s clear we’ll stop. He said he would want to wait to do the next MRI till after the systemic chemo I’ll have in Austin—that is, until after I’ve had several weeks to recover from the chemo. By this point any inflammation in the brain due either to the radiation or the heavy dose of chemo should have subsided, and if the scan shows significant reduction in the tumors (apparently it taks quite some time for them to melt away completely), he’ll feel he has a stronger case to make for doing the bone marrow transplant as soon as possible; he is preparing to marshall his evidence for presenting to the transplant group. I’m fascinated, and wish he were talking about someone else’s brain and someone else’s transplant. So it’ll be a minimum of 6 or 7 weeks before they do another MRI, I think, and then I would imagine it would be several more weeks, maybe even a month or more, before the transplant could begin. Sounds like maybe September. Maybe Dr. Anderssen was right when he said last week that he’d see me again on “first first day of Fall.”
Dr. Giles left, and Anna and I gathered our stuff and headed down to the Transfusion Unit near Elevator A on the second floor, where I’d had all the lumbar punctures so far. Not a good place to stop and smell the coffee—it’s badly burnt, unfortunately inescapable. They were so swamped that they gave us a change of venue—we went back upstairs, this time to the Ambulatory Treatment Center on the 10th floor, new territory for us. They got us into a room in just a few minutes—bigger, incer, more comfortable thean the ones downstairs. I took a cople of Ativan to relax my muscles and ease my pre-puncture anxiety (which was considerable because the two previous punctures had been exhausting, difficult, and painful). A nurse came in and rubbed some numbing cream on the appropriate spot on my back and put a patch of some sort over it to hold it there while I rested on my back and waited for the magic to work. I listed to PD Janes’ The Lighthouse and dozed off, waking intermittently when a nurse came in to offer blankets or orange juice. At 3:00 Sue came in to do the actual procedure. The woman is an artist. It was she who had done my first lumbar puncture, and while I hadn’t actually enjoyed it I hadn’t found it difficult or painful, either. And I had assumed they would all be like that. But I was wrong. The next two LPs were performed by people who are very good at what they do, but for some reason there was trouble finding the right spot, and each time the person who started the procedure had to call someone else in to finish it. It was frustrating and painful for me, and excruciating for Anna, who was with me the whole time and doing everything she could think of to ease my discomfort and make sure it didn’t happen again. Which brings us back to Sue, for whom we had begged and pleaded. I don’t know what Sue does that’s different from what the others do. But the results are worlds apart: I felt a little bit of pressure, a tiny, rief prick of pain that was gone before I could even say “Ouch,” and she was saying “All done—she had drawn the fluid she needed, instilled the chemo, and what I was feeling now was just the application of a bandaid over the spot she had used. We expressed our amazement. Sue said she “just listened” to each patient to “feel the pattern” that is unique to each one. When you find the pattern, she said, you know exactly what spot you need to go to with your needle, and it’s not hard at all. I wonder how you teach that, or if you can teach it. (I once met an antique dealer on Cape Cod who said she could teach me to feel the differences in fine china; and John Gardner’s Tiger graphics produces tactile maps at a resultion of 1/32 of an inch, a fineness of touch I don’t have…) When Sue left the room and I lay down to rest on my back for anhour (to give the chemo time to circulate), I wept—with frustration over the two previous episodes and with great relief and gratitude the ease and grace of this one.
So here’s to Sue.
We picked up some granola and fruit, etc., so we can have breakfast in the room tomorrow morning. And then we came back here. Anna’s resting in the bedroom, and I’m on the couch here, writing this. Trying again to leave the typos and mistakes—they’re not exactly scientific evidence for what’s going on in my brain, but there are so few other symptoms that maybe they’ll be of some use. I can’t tell, subjectively speaking, whether they’ve started to diminish or not. But maybe I’ll be able to do some counting, see some patterns or trends.
At any rate, it’s time to stop. I’m going to take Dillon outside one more time, and then we can all go to bed. Radiation treatment again in the morning—9:15.
More soon. Love to all of you.