To Houston and back this week!
It’s starting to get real again. I woke up this morning at 7:00 in the Rotary House, heard Jay Byrd moving quietly around the room, and suddenly knew that in a couple of hours I’d be in a waiting room in the clinic, waiting for the blood-draw ritual and going on from there to several more tests, ending with a bone marrow biopsy scheduled for 11:00. I felt my anxiety level rising, and told myself to breathe: In, out, in, out, remembering to inhale through my nose to fill my diaphragm, exhaling through the mouth, In, out, in, out… I said the words to myself—In, out, in, out—but I couldn’t sustain it and got up and went through the morning routine: stretch, shower, dress, feed Dillon, take Dillon out, groom him, come back upstairs after a stop at the big garbage can to the left of the hotel door… JayByrd had granola and bananas and morning supplements ready, but there was something odd about the soy milk we’d bought at Whole Foods yesterday: it was chunky! Is it supposed to be like that? Somehow I doubt it… No matter, though, there was enough liquid to moisten the granola and that was the main ting.
It should have been more real yesterday. Peter was in the Aforesis unit on the 8th floor with an IV in each arm, the aforesis machine pulling blood from one arm, removing the stem cells from it, and putting everything else back through the IV in the other arm. It wasn’t easy. The machine expected the blood to be flowing at a certain rate, and whenever the rate dropped below that threshold that machine binged and the hovering nurse said either Open, close, open, close or Keep pumping. I couldn’t see it, of course, but apparently Peter had to hold one arm up in a very awkward position while opening and closing his hand around what was at first a squeezable rubber heart, later replaced by what he thought might be a squeezable fish; he had to keep this up for something like four and a half hours! I wanted to be a lot closer to him than I was—physically, I mean. I was sitting in a strange loungey-type chair near but not at the foot of his bed, with a big, immovable cabinet to my right that held all sorts of supplies for the nurse, who used it quite often; she clearly needed an open path from his IVs all the way around the bed
, and she needed to be able to get to the cabinet as well. So there I sat. The distance made conversation more difficult since we both had to raise our voices to be heard—especially since there were nine other beds in the room, with no doubt similar mini-dramas going on at many of them. There were machines beeping and binging and chiming and ringing, and over to my left something was whirring, or maybe it was a printer though I couldn’t figure out what it might be printing so quickly and so often, and there were nurses and patients coming and going the whole time. But it was a wonderful, amazing thing: there was Peter, my own brother, come all the way from New York to participate in this strange, enormously complex process so that cells from his body can be infused into my body to give me renewed health and new life, and at the same time there we both were, trying to hold ordinary conversation not only between ourselves but also, from time to time, on the phone! There were times when Peter sounded exhausted, and very frustrated, worried that his blood just wouldn’t flow fast enough, and I just wanted to reassure him and say It’ll be OK, but I don’t think I did say it, at least not out loud, because like him I had become convinced that he’d have to go through the whole process again today: he would check in at 7:30, they would check his blood counts and check yesterday’s results, and tell him that there weren’t enough stem cells yet. And I wouldn’t be there, since I would be off in other clinics being tested to determine my physical capacity to tolerate the transplant process.
But it didn’t turn out that way! In fact they harvested something like 7.2 million stem cells from Peter yesterday, well beyond what was actually needed. This is wonderful—it gave him a free day today, and he’ll have another one tomorrow till it’s time for him to go out to Intercontinental Airport and fly back to New York. (He’s been working the whole time he’s been here, I think: yesterday afternoon JayByrd and I drove him to a meeting with some people involved in commercial real estate, and this afternoon he had at least two more meetings with other people; I’m sure he worked last week and over the weekend, too. Tomorrow he’s planning to go to the de Menil collection and the Rothko Chapel, then head for the airport. He and I will have dinner tonight with his friend Nancy—a friend of Nevah’s from college days at Tulane; we ate with her on Monday night as well, at Churasco’s, which was great fun. I’ll try to get together with Peter tomorrow morning—I think my first appointment is at 10:00, so there should be time.
Remarkably, my tests this morning went pretty much on schedule or even ahead of schedule. I went to the big diagnostic lab for bloodwork at 9:00. It seemed a huge contrast from our first visit there back in March, when the waiting room was just seething with people and my overwhelming impression was one of chaos and disorganization and fear (my fear, of course). There were a lot of people in the waiting room again today, though not quite as many as on that first time, but I experienced it differently: when the receptionist called out a long list of names, the names of people whose time it was to come and get tested, I heard it not as an impersonal, demeaning cattle-call but instead as evidence of how many people they can handle at one time—and of how many different kinds of tests they do in there: there are many, many rooms, each devoted to a different kind of diagnostic work. The people in those rooms are quick, efficient, and genuinely nice; in my case, they all made a point of commenting about Dillon and how beautiful he is(JayByrd told me later that one woman had warned him jokingly that one of her colleagues loved Dillon so much she might try to take him, so we’d better watch out!). That was on the second floor, near Elevator A. From there we went up to Diagnostic Imaging, on the third floor near Elevator C, where I had a chest x-ray, and then we went back down to the second floor, again near Elevator C I think, for an echocardiogram and an EKG, and then we went up to 7 for the bone marrow aspiration and biopsy. We were a little early and they weren’t quite ready yet, so JayByrd and I went back up to the 8th floor because we thought I was supposed to sign a form consenting to something. Turned out that wasn’t necessary, but the trip upstairs wasn’t wasted: a volunteer from the Leukemia-Lymphoma Society had been looking for me, and she got us started with a form we can use to get reimbursed for up to $500 in related expenses. And then we met a very interesting woman from the chaplain’s office, someone who works for Jewish Family Services here in Houston though her office is here at MD Anderson. She’s interested in all sorts of healing work, including a number of things that are familiar from BodyChoir—raki and so forth. I’m looking forward to talking with her some more.
Friday morning
Back in Austin! And it feels great—the more precious because we’ll be going back to Houston so soon for the long haul. JayByrd and I got to the house about 9:30 after a very full day. My first appointment was at 10:10 at the Outpatient Radiology building, where I had to sign in for a CT scan of my sinuses (they want to make sure there are no infections lurking in there, waiting to spring into full-blown misery as soon as my white count drops too low to fight them off). The building smelled horrible—not the usual hospital smells, nothing identifiable, just horrible. Eventually we found out there’d been a little accident involving a whole grilled chicken and a microwave oven… So they had as many doors and things open as possible (of course there’s no way to open any windows), and everyone was just putting up with it. The CT scan took a couple of minutes. From there we took the shuttle over to the Ambulatory Care Clinic (yes, there’s something odd about riding the bus to an ambulatory care facility, but what the hell…). We watched a 10-minute video about the Central Venous Catheter that will be inserted into my body next week, and went through the informed-consent form with the nurse before I signed it; I also asked for some clarification about timing, since Anna will be required to attend two classes (two identical classes!) and demonstrate that she can change the dressing and flush the ports with Heperin (to prevent clotting), and none of that showed up anywhere on the schedule. I vented a little about that, and then we went forward. By then we were running a few minutes late for my next appointment, four floors down in the same building. This was for an MRI of the brain, to check on the effects of the radiation treatments I received in May and June.
The tech who led me to a little room, helped me get changed, and started an IV that would be used later in the process to inject some contrast dye turned out to be the same man, Mineheart, who had performed those same tasks on that terrifying Tuesday evening back in May the week after the relapse had been diagnosed, and Tom, the man who operated the MRI equipment, had played the same role in May as well. Somehow both of them were working extra hours this week, so they were there in the afternoon as well. I got a little teary lying there before the table rolled me into the innards of the MRI—the fact that it was the same two men got to me, and I realized that we had come full circle in a way. I’ve been so focused on the transplant that I haven’t allowed myself to think too much about the whole CNS/brain issue, which is in so many ways a separate problem; and then there I was, about to roll inside the same machine that had produced such terrible, terrifying results a little less than three months ago. (The good news is that I was there to have that MRI, and that I was feeling just fine: without the treatments that began in May I’d probably be dead or near-dead now, yet here I am, typing away, sitting in my study, delighted to be here, and annoyed at the sheer massive inconvenience of it all!)
After the MRI—which took about 45 minutes—we had to go back to the main clinic building for a complete Pulmonary Function Test, which involved a lot of breathing into tubes, holding of breath, sharp intakes of breath and long, long exhalations; holding of breath; exhaling or panting with the tube suddenly closing off; and so on. That ended a little after 3:00, and Jay Byrd guided my around the corner to the BMT clinic (we had to walk from Elevator C to Elevator A), where I was scheduled for a lumbar puncture. That evoked similar feelings to those I experienced just before the MRI, since the first lumbar puncture in May had also produced terrifying results. But then Sue, the wonderful artist of the lumbar puncture whom I’ve talked about before, came in and did her magic. I had to lie down for an hour when she was done—standard procedure to give the spinal fluid time to re-establish equilibrium. While I was doing that, Jay Byrd very thoughtfully went back to the hotel and packed up the car. He came back and got me, and we drove over to Miss Saigon in Rice Village (no wisecracks) to get some food (there hadn’t been time for lunch in all the running around) and wait for the worst of the traffic to die down. Then we got on the road, and were back here by 9:30 or so.
Anna’s going to give me a ride over to the gym in a minute so I can get a workout in, and then this afternoon I’ll see Elke at 1:30 and visit with Peg Syverson later. Another full day!
It’s wonderful to be home. I’m gonna post this before it gets any longer.
Love to all!
It should have been more real yesterday. Peter was in the Aforesis unit on the 8th floor with an IV in each arm, the aforesis machine pulling blood from one arm, removing the stem cells from it, and putting everything else back through the IV in the other arm. It wasn’t easy. The machine expected the blood to be flowing at a certain rate, and whenever the rate dropped below that threshold that machine binged and the hovering nurse said either Open, close, open, close or Keep pumping. I couldn’t see it, of course, but apparently Peter had to hold one arm up in a very awkward position while opening and closing his hand around what was at first a squeezable rubber heart, later replaced by what he thought might be a squeezable fish; he had to keep this up for something like four and a half hours! I wanted to be a lot closer to him than I was—physically, I mean. I was sitting in a strange loungey-type chair near but not at the foot of his bed, with a big, immovable cabinet to my right that held all sorts of supplies for the nurse, who used it quite often; she clearly needed an open path from his IVs all the way around the bed
, and she needed to be able to get to the cabinet as well. So there I sat. The distance made conversation more difficult since we both had to raise our voices to be heard—especially since there were nine other beds in the room, with no doubt similar mini-dramas going on at many of them. There were machines beeping and binging and chiming and ringing, and over to my left something was whirring, or maybe it was a printer though I couldn’t figure out what it might be printing so quickly and so often, and there were nurses and patients coming and going the whole time. But it was a wonderful, amazing thing: there was Peter, my own brother, come all the way from New York to participate in this strange, enormously complex process so that cells from his body can be infused into my body to give me renewed health and new life, and at the same time there we both were, trying to hold ordinary conversation not only between ourselves but also, from time to time, on the phone! There were times when Peter sounded exhausted, and very frustrated, worried that his blood just wouldn’t flow fast enough, and I just wanted to reassure him and say It’ll be OK, but I don’t think I did say it, at least not out loud, because like him I had become convinced that he’d have to go through the whole process again today: he would check in at 7:30, they would check his blood counts and check yesterday’s results, and tell him that there weren’t enough stem cells yet. And I wouldn’t be there, since I would be off in other clinics being tested to determine my physical capacity to tolerate the transplant process.
But it didn’t turn out that way! In fact they harvested something like 7.2 million stem cells from Peter yesterday, well beyond what was actually needed. This is wonderful—it gave him a free day today, and he’ll have another one tomorrow till it’s time for him to go out to Intercontinental Airport and fly back to New York. (He’s been working the whole time he’s been here, I think: yesterday afternoon JayByrd and I drove him to a meeting with some people involved in commercial real estate, and this afternoon he had at least two more meetings with other people; I’m sure he worked last week and over the weekend, too. Tomorrow he’s planning to go to the de Menil collection and the Rothko Chapel, then head for the airport. He and I will have dinner tonight with his friend Nancy—a friend of Nevah’s from college days at Tulane; we ate with her on Monday night as well, at Churasco’s, which was great fun. I’ll try to get together with Peter tomorrow morning—I think my first appointment is at 10:00, so there should be time.
Remarkably, my tests this morning went pretty much on schedule or even ahead of schedule. I went to the big diagnostic lab for bloodwork at 9:00. It seemed a huge contrast from our first visit there back in March, when the waiting room was just seething with people and my overwhelming impression was one of chaos and disorganization and fear (my fear, of course). There were a lot of people in the waiting room again today, though not quite as many as on that first time, but I experienced it differently: when the receptionist called out a long list of names, the names of people whose time it was to come and get tested, I heard it not as an impersonal, demeaning cattle-call but instead as evidence of how many people they can handle at one time—and of how many different kinds of tests they do in there: there are many, many rooms, each devoted to a different kind of diagnostic work. The people in those rooms are quick, efficient, and genuinely nice; in my case, they all made a point of commenting about Dillon and how beautiful he is(JayByrd told me later that one woman had warned him jokingly that one of her colleagues loved Dillon so much she might try to take him, so we’d better watch out!). That was on the second floor, near Elevator A. From there we went up to Diagnostic Imaging, on the third floor near Elevator C, where I had a chest x-ray, and then we went back down to the second floor, again near Elevator C I think, for an echocardiogram and an EKG, and then we went up to 7 for the bone marrow aspiration and biopsy. We were a little early and they weren’t quite ready yet, so JayByrd and I went back up to the 8th floor because we thought I was supposed to sign a form consenting to something. Turned out that wasn’t necessary, but the trip upstairs wasn’t wasted: a volunteer from the Leukemia-Lymphoma Society had been looking for me, and she got us started with a form we can use to get reimbursed for up to $500 in related expenses. And then we met a very interesting woman from the chaplain’s office, someone who works for Jewish Family Services here in Houston though her office is here at MD Anderson. She’s interested in all sorts of healing work, including a number of things that are familiar from BodyChoir—raki and so forth. I’m looking forward to talking with her some more.
- It’s Thursday morning now, and Peter’s here; we’re getting ready to go downstairs to breakfast, so I’ll sign off. More later, after CT scans and MRIs and lumbar punctures today. If the lumbar puncture doesn’t make it real, nothing will<grin>..
Friday morning
Back in Austin! And it feels great—the more precious because we’ll be going back to Houston so soon for the long haul. JayByrd and I got to the house about 9:30 after a very full day. My first appointment was at 10:10 at the Outpatient Radiology building, where I had to sign in for a CT scan of my sinuses (they want to make sure there are no infections lurking in there, waiting to spring into full-blown misery as soon as my white count drops too low to fight them off). The building smelled horrible—not the usual hospital smells, nothing identifiable, just horrible. Eventually we found out there’d been a little accident involving a whole grilled chicken and a microwave oven… So they had as many doors and things open as possible (of course there’s no way to open any windows), and everyone was just putting up with it. The CT scan took a couple of minutes. From there we took the shuttle over to the Ambulatory Care Clinic (yes, there’s something odd about riding the bus to an ambulatory care facility, but what the hell…). We watched a 10-minute video about the Central Venous Catheter that will be inserted into my body next week, and went through the informed-consent form with the nurse before I signed it; I also asked for some clarification about timing, since Anna will be required to attend two classes (two identical classes!) and demonstrate that she can change the dressing and flush the ports with Heperin (to prevent clotting), and none of that showed up anywhere on the schedule. I vented a little about that, and then we went forward. By then we were running a few minutes late for my next appointment, four floors down in the same building. This was for an MRI of the brain, to check on the effects of the radiation treatments I received in May and June.
The tech who led me to a little room, helped me get changed, and started an IV that would be used later in the process to inject some contrast dye turned out to be the same man, Mineheart, who had performed those same tasks on that terrifying Tuesday evening back in May the week after the relapse had been diagnosed, and Tom, the man who operated the MRI equipment, had played the same role in May as well. Somehow both of them were working extra hours this week, so they were there in the afternoon as well. I got a little teary lying there before the table rolled me into the innards of the MRI—the fact that it was the same two men got to me, and I realized that we had come full circle in a way. I’ve been so focused on the transplant that I haven’t allowed myself to think too much about the whole CNS/brain issue, which is in so many ways a separate problem; and then there I was, about to roll inside the same machine that had produced such terrible, terrifying results a little less than three months ago. (The good news is that I was there to have that MRI, and that I was feeling just fine: without the treatments that began in May I’d probably be dead or near-dead now, yet here I am, typing away, sitting in my study, delighted to be here, and annoyed at the sheer massive inconvenience of it all!)
After the MRI—which took about 45 minutes—we had to go back to the main clinic building for a complete Pulmonary Function Test, which involved a lot of breathing into tubes, holding of breath, sharp intakes of breath and long, long exhalations; holding of breath; exhaling or panting with the tube suddenly closing off; and so on. That ended a little after 3:00, and Jay Byrd guided my around the corner to the BMT clinic (we had to walk from Elevator C to Elevator A), where I was scheduled for a lumbar puncture. That evoked similar feelings to those I experienced just before the MRI, since the first lumbar puncture in May had also produced terrifying results. But then Sue, the wonderful artist of the lumbar puncture whom I’ve talked about before, came in and did her magic. I had to lie down for an hour when she was done—standard procedure to give the spinal fluid time to re-establish equilibrium. While I was doing that, Jay Byrd very thoughtfully went back to the hotel and packed up the car. He came back and got me, and we drove over to Miss Saigon in Rice Village (no wisecracks) to get some food (there hadn’t been time for lunch in all the running around) and wait for the worst of the traffic to die down. Then we got on the road, and were back here by 9:30 or so.
Anna’s going to give me a ride over to the gym in a minute so I can get a workout in, and then this afternoon I’ll see Elke at 1:30 and visit with Peg Syverson later. Another full day!
It’s wonderful to be home. I’m gonna post this before it gets any longer.
Love to all!
posted by John Slatin at 10:49 AM
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