Dec 18th, 2013
Happy holidays, folks!
It's been a little while, and I actually feel a rusty at blogging - the easy flow isn't quite there. Still, no sense letting that stop anything.
The largest part of the day to-day circumstances of my existence remain unchanged, though some of the finer medical details have been altered. I continue to do well medically, and there have been no outbreaks of graft versus host disease, though there was a bit of scare in that general reagrd about a month ago. I've been having increasing issues with my skin, which is vastly entertaining, of course, and had a half-day stay in the emergency room at the Royal University Hospital for investigative purposes, culminating in a biopsy being taken from my upper back (spoiler: it came back negative for gvhd). The emergency room stay was punctuated by the very loud demands of a woman that I never actually laid eyes on, who went by the name of Beverly. I know this from her interactions with the nursing staff, which went something like this:
Beverly: Hey. Hey! HEY! COME HERE! COME HERE!
Nurse: Bev, you can't yell in here.
Beverly: YES I CAN!
Nurse: No, no you can't.
Beverly: ...yes I can.
Repeat three or four times with subtle variations in the volume, timing, and phrasing, and you'll have a very good mental picture of the events in question. Bev seemed nice, you know?
I don't think that most of you have visited the emergency room with enough frequency to have a consistent set of expectations for the experience, at least I hope not, but I certainly have and do. From my experience, this was a fairly typical visit for a Saturday morning, aside from the fact that I currently rate my own private room, because of my lack of vaccination and my immature immune system. Typical, to me, means that the whole thing took about four hours, and that there was a fair amount of confusion on the part of the ER doctor available, because he or she isn't really in the mindset to deal with my more esoteric problems; they're focused on how to put people back together after recently accrued damage, and how to take little people out of lady people, because two parental people loved each other very much and touched tummies (that's how pregnancy works, right?).
Several stressed medical employees, some local anaesthetic, and a small piece of me later, Ash picked me up. Things had progressed to this point because the offices of the dermatologist I'm seeing while my regular dermatologist is on sabbatical had yet to contact me for an appointment, despite repeated requests from my other physicians. While the biopsy that was taken did come back negative, the fact that I felt that such measures were prudent spurred my oncologist's office to get somewhat brusque with the dermatologist's office, and they sneaked me into a rather immediate opening in their schedule.
Fun fact: every time I get a new doctor, I have to go through the process of proving to them that they don't need to dumb anything down for me, and that I'm a lot more likely to do what they want me to in the way that they would like if they bother to give me the reasons for it.
In this particular instance, that rapport was not fully established, because the doctor in question was rushed. He was taking all of his regular patients, all or most of my regular dermatologist's patients, and overseeing the phototherapy department over at RUH; the net effect of all of this was that he was a teense stressed. I assume he still is, though I've not seen him since that initial consultation. The net outcome of this meeting was that I got some topical steroids and that I was once again scheduled for aggressive medical tanning, due to what appears to be merely compound eczema, which I am more than willing to accept, given the alternatives. The current arrangement for the combination UVA/UVB treatments is thrice weekly, Monday, Wednesday, and Friday, at nine-thirty am. It's oddly fulfilling, though that might just be the brisk walk there and back, but I think that the benefits having some sort of actual regular schedule shouldn't be overlooked.
I've been on an antibiotic regimen ever since the first stem cell transplant, in order to prevent a very specific type of pneumonia. First, for months, was bactrim, orally twice daily on Mondays and Tuesdays; this was replaced by dapsone orally once a day, because I'd started getting stomach irritation from the bactrim. The dapsone has itself been replaced by another drug called pentamadine, which I inhale for twenty minutes, once a month. That's being scheduled around the phototherapy, and happily, is accomplished down the same hallway on the fifth floor of the old RUH building.
It's been very nice doing the phototherapy, which might seem odd, but bear in mind that it has been part of my routine since 2008, so it feels a lot like things getting back to normal for me. Also, there's the exercise from the walk there, which, at a brisk pace, takes about twenty-five minutes each way, and includes seven flights of stairs (five at the hospital, two at the apartment). Mostly, I think, it's getting to see all of my nurses again. Through phototherapy, I acquired a rather protective team of adoptive mothers, and it's nice to see most of them again. I say most, because several have retired while I was off getting my cell-mediated immune system replaced.
Life is still weird, but it's a manageable sort of weird, you know?
It's been a little while, and I actually feel a rusty at blogging - the easy flow isn't quite there. Still, no sense letting that stop anything.
The largest part of the day to-day circumstances of my existence remain unchanged, though some of the finer medical details have been altered. I continue to do well medically, and there have been no outbreaks of graft versus host disease, though there was a bit of scare in that general reagrd about a month ago. I've been having increasing issues with my skin, which is vastly entertaining, of course, and had a half-day stay in the emergency room at the Royal University Hospital for investigative purposes, culminating in a biopsy being taken from my upper back (spoiler: it came back negative for gvhd). The emergency room stay was punctuated by the very loud demands of a woman that I never actually laid eyes on, who went by the name of Beverly. I know this from her interactions with the nursing staff, which went something like this:
Beverly: Hey. Hey! HEY! COME HERE! COME HERE!
Nurse: Bev, you can't yell in here.
Beverly: YES I CAN!
Nurse: No, no you can't.
Beverly: ...yes I can.
Repeat three or four times with subtle variations in the volume, timing, and phrasing, and you'll have a very good mental picture of the events in question. Bev seemed nice, you know?
I don't think that most of you have visited the emergency room with enough frequency to have a consistent set of expectations for the experience, at least I hope not, but I certainly have and do. From my experience, this was a fairly typical visit for a Saturday morning, aside from the fact that I currently rate my own private room, because of my lack of vaccination and my immature immune system. Typical, to me, means that the whole thing took about four hours, and that there was a fair amount of confusion on the part of the ER doctor available, because he or she isn't really in the mindset to deal with my more esoteric problems; they're focused on how to put people back together after recently accrued damage, and how to take little people out of lady people, because two parental people loved each other very much and touched tummies (that's how pregnancy works, right?).
Several stressed medical employees, some local anaesthetic, and a small piece of me later, Ash picked me up. Things had progressed to this point because the offices of the dermatologist I'm seeing while my regular dermatologist is on sabbatical had yet to contact me for an appointment, despite repeated requests from my other physicians. While the biopsy that was taken did come back negative, the fact that I felt that such measures were prudent spurred my oncologist's office to get somewhat brusque with the dermatologist's office, and they sneaked me into a rather immediate opening in their schedule.
Fun fact: every time I get a new doctor, I have to go through the process of proving to them that they don't need to dumb anything down for me, and that I'm a lot more likely to do what they want me to in the way that they would like if they bother to give me the reasons for it.
In this particular instance, that rapport was not fully established, because the doctor in question was rushed. He was taking all of his regular patients, all or most of my regular dermatologist's patients, and overseeing the phototherapy department over at RUH; the net effect of all of this was that he was a teense stressed. I assume he still is, though I've not seen him since that initial consultation. The net outcome of this meeting was that I got some topical steroids and that I was once again scheduled for aggressive medical tanning, due to what appears to be merely compound eczema, which I am more than willing to accept, given the alternatives. The current arrangement for the combination UVA/UVB treatments is thrice weekly, Monday, Wednesday, and Friday, at nine-thirty am. It's oddly fulfilling, though that might just be the brisk walk there and back, but I think that the benefits having some sort of actual regular schedule shouldn't be overlooked.
I've been on an antibiotic regimen ever since the first stem cell transplant, in order to prevent a very specific type of pneumonia. First, for months, was bactrim, orally twice daily on Mondays and Tuesdays; this was replaced by dapsone orally once a day, because I'd started getting stomach irritation from the bactrim. The dapsone has itself been replaced by another drug called pentamadine, which I inhale for twenty minutes, once a month. That's being scheduled around the phototherapy, and happily, is accomplished down the same hallway on the fifth floor of the old RUH building.
It's been very nice doing the phototherapy, which might seem odd, but bear in mind that it has been part of my routine since 2008, so it feels a lot like things getting back to normal for me. Also, there's the exercise from the walk there, which, at a brisk pace, takes about twenty-five minutes each way, and includes seven flights of stairs (five at the hospital, two at the apartment). Mostly, I think, it's getting to see all of my nurses again. Through phototherapy, I acquired a rather protective team of adoptive mothers, and it's nice to see most of them again. I say most, because several have retired while I was off getting my cell-mediated immune system replaced.
Life is still weird, but it's a manageable sort of weird, you know?
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