Wrung out: leaving Houston last Friday
We both feel wrung out and exhausted, yet nothing has really “happened” today. We got the Transfusion unit in the ACB (ambulatory Care Building) at 7:30 so they could confirm that yesterday’s chest x-rays showed the CVC (central Venous Catheter) in proper position and change the dressing, and so Anna could demonstrate that she understands how to clean the three “lumens” and flush them with Heparin. By the time we were finished with that, it was time for Anna to be on a conference call, so we stayed in the waiting area (which is actually pleasant—plenty of natural light, broad corridors, and blissfully quiet: no TVs blaring Fox News or CNN or Jerry Springer, etc., etc.). While she talked with her clients, I typed up some notes about the kinds of support I’ll want from hospital staff that they might not be expecting—e.g., orientation to the room, to the whole floor in that part of the hospital; avoidance of purely visual cues when giving instructions; help navigating the halls when it’s time to walk, etc. When Anna was done with her call we went downstairs to the cafeteria, and I showed her what I’d written. She tweaked things a bit, and then I emailed the end result to Eric Koval, the transplant coordinator, since we’d be meeting with him at 1:00. By then it was time go up to our meeting with Dr. Andersson, where we would get the final “yea” or “nay” on the transplant, based on the results of the tests done last week when JayByrd and I were here.
OK, I retract the bit about “nothing happened”: upon review, we did quite a lot! I wrote that first paragraph yesterday (Friday) afternoon, sitting in the hotel lobby, waiting for Anna, who was (a) finishing up a call with a client and (b) overseeing the packing of the car so we could drive back to Austin; this also involved (c) making sure that the stuff we were bringning back to Austin was properly separated from the stuff we wanted to store until our return to the hotel… Especially since the heart of the day was the visit with Dr. Andersson, followed by a talk with Horge, the research nurse who finally “randomized” me and told us what date I should check into the hospital, followed by a session with Eric, the transplant coordinator, and Jacqueline, a nurse from the floor where I’ll be, to go over what they and we should expect of one another. “Wrung out” makes sense now.
Dr. Andersson gave us wonderful news: the MRI showed that the tumors in my brain are gone, and the lumbar puncture showed that my cerebrospinal fluid is clear of leukemia! The bone marrow biopsy showed that my bone marrow is similarly clear. And my heart and lungs are functioning well, and my sinuses are free of infection. This really is amazing: just three months (almost to the day) after my terrifying relapse was diagnosed, all signs of it are gone. But there wasn’t time to celebrate the news yesterday, though Anna caught the fact that I was close to tears with relief and pointed out to Dr. Andersson that I was happy. All that wonderful news was only prologue: it means that all systems are “go” for the bone marrow transplant, and we’re about to step aboard what Anna has taken to calling “the rocket ship.” We talked a bit longer, with Dr. Andersson offering reassurance about the intensity of the chemotherapy I’ll undergo: he claims that it is, if anything, milder than what I’ve had so far, and less likely to result in dangerous complications. He prdicts that we’ll be “bored” in the hospital, which actually sounds pretty good to me given the terrible images I’ve been conjuring up (which come mostly from last year’s month-long stint at St. David’s, during much of which I was too weak even to change my position in bed without assistance). Then he left the room so we could talk with Jorge, the research nurse, who explained a little more about the study in which we’re participating. And then he left to go and perform the randomization that would yield the information we’ve been so frustrated not to have till now: my admission date to the hospital. He arrued us that he’d back in just 5 or 10 minutes, and I suppose he was, but if felt longer, and actually it was Anna, who had gone out into the hall to look for Eric, who came back in with the news that we would check in on Tuesday (the 15th).
So that’s it: we check in the afternoon or early evening of the 15th (after I go to the lab to have more bloodwork, since this week’s tests will be out of date by then). They’ll start me on chemo the next day, using two drugs, busolfan and fludarabine. The chemo will continue for four days (through Saturday the 19th), followed by two “days off” (I’ll believe that when it happens!). Then, on Tuesday the 22d, the Big Day: the transplant itself will occur. Peter’s stem cells will be infused into my system through the CVC, much as other transfusions I’ve received in the past were infused through my PICC line or PortOCath. It’ll take a few hours—I like to think, for symmetry’s sake, that it will be about as long as it took to harvest the cells from Peter 10 days ago.
We were assigned the 15th as an admission date because the randomization put me into the control group, patients whose dosage of busolfan is determined in the “traditional” way, by body weight; for the experimental group, dosage will be determined in a more complex way, by tracking the extent to which each individual’s body processes the drug. The transplant team will also monitor this “exposure” rate for patients in my group, however, and dosage will be adjusted in cases where exposure is either abnormally low (meaning that the drug isn’t being absorbed well enough by enough of the body) or abnormally high (meaning, I guess, that the body is absorbing the drug too quickly)). Writing this, I realize I don’t understand it; I know little more than that I’ll be wearing a second small catheter in my arm for the four days of chemo, so they can take blood samples that aren’t confused by any residual drugs in the CVC through which they’re infused. And I’m ambivalent about being in the control group: though Andersson assured us that they have no hard data yet to confirm that the experimental method produces even better results than the traditional one, the working hypothesis is that it will, and the fact that they’re already adapting the traditional method lends weight to that. I just checked in with Anna, suddenly wondering whether I should drop out of the study and just insist on the experimental procedure; but she reminded me that I can’t do that—since it’s an experimental procedure, it’s only available to people participating in the study. It just so happens that I ended up in the control group—but even in the group I’ll have the benefit of monitoring beyond what’s usually provided in the “standard” treatment regimen. Her saying these things calmed me down—it may have been just a little “I don’t wanna go!” flaring up.
At any rate, after the conversation with Jorge was over we waited a few more minutes and then met with Eric (the transplant coordinator) and Jackqueline, a nurse from the BMT floor. Jacqueline talked a bit about the routine on the floor, told us that there is currently a patient who’s blind up there, and indicated that she didn’t see any problems with the issues we’d raised in our email to Eric earlier in the day (which he had given to her as well). Then Anna asked if she might actually get a look at a room (on her previous visit to the BMT floor she hadn’t gotten to see inside any of the rooms), so Jackqueline suggested they go up right then and try. After a while Anna came back, and it was time for us to head out.
Of course it took longer to get out of Houston than we’d anticipated. Although I had been pretty much completely packed by the time we left the room at 7:00 that morning, somehow I managed to get all discombobulated an,d by the time I was recombobulated (take that, spellchecker!) time had flown and it was time for Anna to contact her client again. Which pretty much brings me full circle, since I started this post while she was on that call. (That was Friday afternoon; it’s almost noon on Monday now.)
So I’ll jump ahead a few hours. We made it through Houston traffic and got onto I-10 heading west, then stopped to have a little dinner and relax a bit so we could decompress and debrief before the long drive home. It was a decent meal—just burgers and salad—at the Omni Hotel, in a very pretty space, filled with natural light from huge windows and the sound of water from several fountains. It helped. But then, sometime soon after she exited from I-10 onto Route 71, there was a strange, ugly, grinding/dragging noise from under the car. Anna pulled over. We both thought glumly about the $1600 we had just spent replacing the compressor for the car’s air conditioning the day before we left. Now what? We had visions of tow trucks and bad bad motels and of waking up even more exhausted than we’d been when we went to sleep. The Fayette County sherrif’s department was taking its time about getting help to us. And then a pickup truck pulled off the road and steopped a few yards ahead. A man walked over and asked if he could help; from the sound of his voice he might have been in his mid- or late 60s, and he had the faint Texas German accent you can still hear in some of the small towns that were originally settled by German immigrants in the mid- to late 19th century. He checked for flat tires and didn’t find any, though he thought one of the front tires might be a little low (the tow-truck operator at the next gas station said later that it was just fine). Then he asked Anna to pull up and over to the right a little. She did, and apparently that freed up whatever was dragging—some piece of plastic from the “air diverter” (who knew?!) next to the left front tire had pulled loose somehow. The man walked over to his truck, then came back, disappointed with himself: “I ain’t got no baling wire,” he said. But then he thought again: “But I got duct tape! That oughta hold you.” And in a few minutes he had taped the piece of plastic into place and sent us on our way. He wouldn’t take money, just said that if we were ever in the area again and needed any help, just call: his wife, who is also visually impaired and so doesn’t leave the house, will be there to answer the phone and he’ll be glad to help. Anna looked at the card he handed her, and it turns out they have an appliance repair business. The man’s name is Emil—a good German name. Thank you, Emil, for your act of kindness and trust.
And here’s another tale of wonderful generosity. On Wednesday night (it might have been Thursday) we went to a terrific restaurant called Gravitas for dinner—a big, busy place on Taft that does a very nice job with their food. (We’d been there twice before.) We knew this might well be our last special meal together in Houston before the craziness begins in earnest. We decided to split a starter of smoked trout and warm potato salad, then split a green salad as well; we’d each order an entrée . The trout was wonderful—the smoked fish and the potato sald were mixed together into a single salad with a really nice texture and a mild vinegary-and-smoky flabor that were just lovely together. And then the waiter appeared again, bearing not our salads but two huge platters of appetizers. There must be some mistake, we thought, but no: Emmett Fox had sent them! We were stunned. Emmett is the owner of two superb restaurants in Austin: Asti, which is our hands-down favorite place (it helps—or hurts, depending on your point of view<GRIN>-- that it’s just up the street; and Fino, where in fact we had had dinner on Tuesday night with Bill Nemir and Rino Pizzi. We had seen Emmett there, and told him we’d be leaving for Houston in the morning. The subject of Gravitas came up in that conversation, and Anna told him we were thinking about going there. So evidently he called the restaurant and told them to watch out for us—all they had to do was look for Dillon!—and that was that. It was a beautiful gesture, another in a long line of beautiful gestures Emmett has made since I got sick last summer; and it was all the more beautiful for being so utterly unexpected and so perfect for the occasion. So here’s to you, Emmett. Thanks so very much!
I am grateful to live in a world where such acts of kindness and generosity can happen. Not everyone is so fortunate. We have to change that somehow.
OK, I retract the bit about “nothing happened”: upon review, we did quite a lot! I wrote that first paragraph yesterday (Friday) afternoon, sitting in the hotel lobby, waiting for Anna, who was (a) finishing up a call with a client and (b) overseeing the packing of the car so we could drive back to Austin; this also involved (c) making sure that the stuff we were bringning back to Austin was properly separated from the stuff we wanted to store until our return to the hotel… Especially since the heart of the day was the visit with Dr. Andersson, followed by a talk with Horge, the research nurse who finally “randomized” me and told us what date I should check into the hospital, followed by a session with Eric, the transplant coordinator, and Jacqueline, a nurse from the floor where I’ll be, to go over what they and we should expect of one another. “Wrung out” makes sense now.
Dr. Andersson gave us wonderful news: the MRI showed that the tumors in my brain are gone, and the lumbar puncture showed that my cerebrospinal fluid is clear of leukemia! The bone marrow biopsy showed that my bone marrow is similarly clear. And my heart and lungs are functioning well, and my sinuses are free of infection. This really is amazing: just three months (almost to the day) after my terrifying relapse was diagnosed, all signs of it are gone. But there wasn’t time to celebrate the news yesterday, though Anna caught the fact that I was close to tears with relief and pointed out to Dr. Andersson that I was happy. All that wonderful news was only prologue: it means that all systems are “go” for the bone marrow transplant, and we’re about to step aboard what Anna has taken to calling “the rocket ship.” We talked a bit longer, with Dr. Andersson offering reassurance about the intensity of the chemotherapy I’ll undergo: he claims that it is, if anything, milder than what I’ve had so far, and less likely to result in dangerous complications. He prdicts that we’ll be “bored” in the hospital, which actually sounds pretty good to me given the terrible images I’ve been conjuring up (which come mostly from last year’s month-long stint at St. David’s, during much of which I was too weak even to change my position in bed without assistance). Then he left the room so we could talk with Jorge, the research nurse, who explained a little more about the study in which we’re participating. And then he left to go and perform the randomization that would yield the information we’ve been so frustrated not to have till now: my admission date to the hospital. He arrued us that he’d back in just 5 or 10 minutes, and I suppose he was, but if felt longer, and actually it was Anna, who had gone out into the hall to look for Eric, who came back in with the news that we would check in on Tuesday (the 15th).
So that’s it: we check in the afternoon or early evening of the 15th (after I go to the lab to have more bloodwork, since this week’s tests will be out of date by then). They’ll start me on chemo the next day, using two drugs, busolfan and fludarabine. The chemo will continue for four days (through Saturday the 19th), followed by two “days off” (I’ll believe that when it happens!). Then, on Tuesday the 22d, the Big Day: the transplant itself will occur. Peter’s stem cells will be infused into my system through the CVC, much as other transfusions I’ve received in the past were infused through my PICC line or PortOCath. It’ll take a few hours—I like to think, for symmetry’s sake, that it will be about as long as it took to harvest the cells from Peter 10 days ago.
We were assigned the 15th as an admission date because the randomization put me into the control group, patients whose dosage of busolfan is determined in the “traditional” way, by body weight; for the experimental group, dosage will be determined in a more complex way, by tracking the extent to which each individual’s body processes the drug. The transplant team will also monitor this “exposure” rate for patients in my group, however, and dosage will be adjusted in cases where exposure is either abnormally low (meaning that the drug isn’t being absorbed well enough by enough of the body) or abnormally high (meaning, I guess, that the body is absorbing the drug too quickly)). Writing this, I realize I don’t understand it; I know little more than that I’ll be wearing a second small catheter in my arm for the four days of chemo, so they can take blood samples that aren’t confused by any residual drugs in the CVC through which they’re infused. And I’m ambivalent about being in the control group: though Andersson assured us that they have no hard data yet to confirm that the experimental method produces even better results than the traditional one, the working hypothesis is that it will, and the fact that they’re already adapting the traditional method lends weight to that. I just checked in with Anna, suddenly wondering whether I should drop out of the study and just insist on the experimental procedure; but she reminded me that I can’t do that—since it’s an experimental procedure, it’s only available to people participating in the study. It just so happens that I ended up in the control group—but even in the group I’ll have the benefit of monitoring beyond what’s usually provided in the “standard” treatment regimen. Her saying these things calmed me down—it may have been just a little “I don’t wanna go!” flaring up.
At any rate, after the conversation with Jorge was over we waited a few more minutes and then met with Eric (the transplant coordinator) and Jackqueline, a nurse from the BMT floor. Jacqueline talked a bit about the routine on the floor, told us that there is currently a patient who’s blind up there, and indicated that she didn’t see any problems with the issues we’d raised in our email to Eric earlier in the day (which he had given to her as well). Then Anna asked if she might actually get a look at a room (on her previous visit to the BMT floor she hadn’t gotten to see inside any of the rooms), so Jackqueline suggested they go up right then and try. After a while Anna came back, and it was time for us to head out.
Of course it took longer to get out of Houston than we’d anticipated. Although I had been pretty much completely packed by the time we left the room at 7:00 that morning, somehow I managed to get all discombobulated an,d by the time I was recombobulated (take that, spellchecker!) time had flown and it was time for Anna to contact her client again. Which pretty much brings me full circle, since I started this post while she was on that call. (That was Friday afternoon; it’s almost noon on Monday now.)
So I’ll jump ahead a few hours. We made it through Houston traffic and got onto I-10 heading west, then stopped to have a little dinner and relax a bit so we could decompress and debrief before the long drive home. It was a decent meal—just burgers and salad—at the Omni Hotel, in a very pretty space, filled with natural light from huge windows and the sound of water from several fountains. It helped. But then, sometime soon after she exited from I-10 onto Route 71, there was a strange, ugly, grinding/dragging noise from under the car. Anna pulled over. We both thought glumly about the $1600 we had just spent replacing the compressor for the car’s air conditioning the day before we left. Now what? We had visions of tow trucks and bad bad motels and of waking up even more exhausted than we’d been when we went to sleep. The Fayette County sherrif’s department was taking its time about getting help to us. And then a pickup truck pulled off the road and steopped a few yards ahead. A man walked over and asked if he could help; from the sound of his voice he might have been in his mid- or late 60s, and he had the faint Texas German accent you can still hear in some of the small towns that were originally settled by German immigrants in the mid- to late 19th century. He checked for flat tires and didn’t find any, though he thought one of the front tires might be a little low (the tow-truck operator at the next gas station said later that it was just fine). Then he asked Anna to pull up and over to the right a little. She did, and apparently that freed up whatever was dragging—some piece of plastic from the “air diverter” (who knew?!) next to the left front tire had pulled loose somehow. The man walked over to his truck, then came back, disappointed with himself: “I ain’t got no baling wire,” he said. But then he thought again: “But I got duct tape! That oughta hold you.” And in a few minutes he had taped the piece of plastic into place and sent us on our way. He wouldn’t take money, just said that if we were ever in the area again and needed any help, just call: his wife, who is also visually impaired and so doesn’t leave the house, will be there to answer the phone and he’ll be glad to help. Anna looked at the card he handed her, and it turns out they have an appliance repair business. The man’s name is Emil—a good German name. Thank you, Emil, for your act of kindness and trust.
And here’s another tale of wonderful generosity. On Wednesday night (it might have been Thursday) we went to a terrific restaurant called Gravitas for dinner—a big, busy place on Taft that does a very nice job with their food. (We’d been there twice before.) We knew this might well be our last special meal together in Houston before the craziness begins in earnest. We decided to split a starter of smoked trout and warm potato salad, then split a green salad as well; we’d each order an entrée . The trout was wonderful—the smoked fish and the potato sald were mixed together into a single salad with a really nice texture and a mild vinegary-and-smoky flabor that were just lovely together. And then the waiter appeared again, bearing not our salads but two huge platters of appetizers. There must be some mistake, we thought, but no: Emmett Fox had sent them! We were stunned. Emmett is the owner of two superb restaurants in Austin: Asti, which is our hands-down favorite place (it helps—or hurts, depending on your point of view<GRIN>-- that it’s just up the street; and Fino, where in fact we had had dinner on Tuesday night with Bill Nemir and Rino Pizzi. We had seen Emmett there, and told him we’d be leaving for Houston in the morning. The subject of Gravitas came up in that conversation, and Anna told him we were thinking about going there. So evidently he called the restaurant and told them to watch out for us—all they had to do was look for Dillon!—and that was that. It was a beautiful gesture, another in a long line of beautiful gestures Emmett has made since I got sick last summer; and it was all the more beautiful for being so utterly unexpected and so perfect for the occasion. So here’s to you, Emmett. Thanks so very much!
I am grateful to live in a world where such acts of kindness and generosity can happen. Not everyone is so fortunate. We have to change that somehow.
posted by John Slatin at 11:55 AM
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