An update from Marcia 6/13/06
Over the last week, a few people have asked (rather timidly, I thought)
whether I'm OK --not having heard from me lately, and fearing the
latest disaster... Well, then, I'm happy to report that I AM DOING JUST
FINE, I am practically a normal person again! Well, okay, a totally
bald woman with a big scar down her leg but STILL... I"m feeling like
myself again, and isn't nice to get a message from this address that is
not a rant?
So, the news is that the terrible, nasty, awful chemo is over, over,
over and I am eating and drinking and working and exercising and
feeling pretty good. Next week I will go to Tofino, on the far side of
Vancouver Island, to help my good friend Marie celebrate her 50th
birthday, and the following week Michael, Maddy, Zane and I will head
up to Camp Mather in the Sierras. (Never mind the stupid job!!) I
will start daily radiation treatments in July and continue through most
of the month of August -- so that's it for my summer vacation plans,
although I do get the weekends off! (ha ha, more to the point, the
radiation techs get the weekend off.....) We are sad that this means
our family won't make it to Lake Otisco this summer, or to Lisa's
wedding celebration, or to various other parts of the world where we
might like to be heading. But Mom & Dad, and possibly Leslie, are
planning to visit in August, and Madeleine, at least, has a full
schedule of activities to attend to here in SF. The radiation is not
expected to make me sick or very, very tired, and we're hoping that the
worst thing about it will be the inconvenience of it all. In fact, I'm
thinking that the worst of this treatment is behind me, and once this
course of radiation is through it will just be a matter of regular
monitoring to make sure we totally KICKED THIS CANCER'S BUTT. That's
the plan.
It couldn't have happened this way without all the incredible people I
know and am proud to count as my family and friends. Thank you all for
helping me to get through this! And don't worry - as soon as I have
something absurd to complain about, you'll probably hear from me!
Love,
Marcia
_______________________________________________________________
Mon 05/15/06 08:37 PM
Family and friends: I promised you two more rants, and here they are Time to move on. As I mentioned, one of these has been in the works for a while, and the other is just the same subject as my last email, only dragged out for more pages ( so if you had enough of that tale, skip it).
I'm not sure why I'm writing these things. The whole journey through the cancer world is such a bizarre experience for me - did this really happen? is it really happening to me? - and sending out detailed accounts of it to all my friends and relations feels a bit embarrassing and self-absorbed. But, in fact, I am a bit self-absorbed these days, sorry. This is maybe one way of making the experience mine, not just some surreal Kafkaesque dream in which I find myself, which is often how it seems. (Except the nausea part; that most definitely was me, albeit a spacier not-altogether-there version of me.) But all of you have been with me throughout it in so many ways. Most especially, I appreciate how happy we ALL are that the chemo is over, over over! And I hope this is all that any of you will ever see of that world.
I am doing much, much better - still feeling tired a lot of the time, but that's about it. I went back to my office today and will start working again on a fittingly relaxed schedule, mostly from home. That way I can nap, drink plenty of fluids, and flush the rest of the poison away. Thank you all for the notes, cards, emails, hats, paintings, and good vibes. You are all awesome.
.
Love, Marcia
________________________________________________________
5-05-06
It's been quite a week. I went in on Thursday, April 27 for my second round of chemo, knowing that I would be spending my birthday in the hospital but wanting to get this whole ordeal over with without delay. I celebrated my birthday with a head shave, a new hat, and a party with my family in the hospital corridor (outside the main floor, where children under twelve aren't allowed), featuring popsicles and chocolate truffles. After that, the chemo got pretty rough -- nothing violent, but I felt really miserable and nauseous; couldn't eat or drink or do much of anything. Stil, I was really, really happy to go home on Monday and looking forward to a few days of recuperation and gradually getting back to my nearly normal self in time for the next round. I was half-way done.
The next morning I went out for a walk and, upon my return, passed out on the front porch. I passed out twice more later in the afternoon and was taken by ambulance to the emergency room, where I received 3 liters of intravenous fluids, a CT head scan, and an ankle x-ray. Everything checked out okay, but they admitted me to the hospital cardiac ward for observation. Although I was seriously dehydrated, the doctors thought that three incidents of "sincope" (medical term for fainting*) was unusual, as was the fact that I had no dizzy spells or even any recollection of the events that preceded the incidents. I simply found myself lying on the floor, and wondered what I was doing there. After two more generally miserable days and nights, numerous EKGs, an echocardiogram, a chest x-ray and few pregnancy tests, none of which showed any heart damage or irregularities (or pregnan.cy), they let me out again Thursday night. The attending physician (who also consulted by phone with my oncologist and, this being a research and teaching facility, various other doctors) thought that the sincope was most likely the result of an idiocyncratic heart arrhythmia probably induced by doxyrubicon, one of the chemo drugs I'd been getting. But they also thought, based on these consultations and a review of "the literature", that it would not increase the risk of more such incidents after further treatments. And, although docyrubicon is known to cause these arrythmias within 24 hours after treatment, and also has the potential of causing long-term heart damage in some cases, they didn't think that there was necessarily any connection between those risks - or at least, no such connection had been shown.
I felt markedly better by Thursday --even aside from the discharge - and the food at home is decidedly superior to hospital fare. I was eating and drinking again not just resolutely, but with enjoyment, finally. This morning (Friday) we saw my oncologist. It was a regularly scheduled visit but we were prepared to sit down and hash out all the information, options, risks -- you know the drill by now. But he said just two beautiful words: "You're done." I nearly fell off my chair. (I had to confess that, during one of my darker moments, I was actually hoping to have heart disease so I wouldn't have to do any more chemo.) We did, in fact, hash it all out, and I know that my doctor, who is widely respected if not held in awe by the entire medical community, and has only been wonderful, compassionate, intelligent and charming in my eyes, had thought about this long and hard. In a nutshell it boils down to this: no one knows whether my reaction was to dehydration or to the drugs (and the other chemo drug I'm getting, ifosfamide, also can cause heart damage), but no one really knows whether or not there is any connection between arythmia following chemo and later heart damage, or even between arythmia following one chemo or the next. For that matter, I don't actually have any detectable cancer in my body and no one knows whether the chemo is killing cancer cells or just killing cells. And the regimen of four cycles of chemo, in the case of my type of cancer, is based on nothing more than the fact that "that's the number of rounds they do." No one knows whether one, or two or three is enough, or if five would be better. I've been through two rounds, and given the circumstances that's enough. And finally, in the immortal words of my doctor, "you never wanted to do this chemo in the first place." Amen. The phantoms doing battle in my body have outdone each other, and I'm free.
We really celebrated my birthday, and my freedom, tonight. For now, I have to keep drinking those liquids to flush the last of the poison out of me, get my red blood cell count up and get back to my old self. I will continue to receive injections to raise my red blood cell counts, get a few more scans later in May, and revisit the whole situation with my oncologist after that. (By now, I think I have the most photographed internal parts of anyone now living, although, sadly for the "competition", I'm sure that's nowhere near the case.) I'll still go through radiation treatments once my body has recovered from the chemo, and keep monitoring the situation for the next few years after that. But I feel like the worst is over, and I feel really great about that.
Whoa, this turned out to be longer than I'd planned. Sorry for the excruciating details and the medical misspellings (although I think the usage is correct). I thought I should update my pals, and I'm glad to be ending on what is for me a happy note. I do have a couple of my rants in the works for you hardened gluttons for punishment, one of which details the ordeals of the past week even more exruciatingly but which I hope will end up readable. I do hope to live to a ripe old age without boring everyone I know with endless travelogues through my medical history -- that, like the drugs in my bloodstream, this, too, will pass. There are so many other people out there suffering a whole world of pain far beyond what I've been through; I've been lucky, loved, and blessed. I want you all to know that! I'll keep you posted, but the news for now looks pretty good to me. Love, Marcia * pronounced "sink'- o-pee". Good word, huh?)
syncope: [from the Greek synkope, cutting short] 1. a partial or complete temporary suspension of respiration and circulation due to cerebral schemia: FAINT. 2. the loss of one or more sounds or letters in the interior of a word (as in fo'c'sle for forecastle).
How about a seemingly related musical term, syncopation? Interesting
whether I'm OK --not having heard from me lately, and fearing the
latest disaster... Well, then, I'm happy to report that I AM DOING JUST
FINE, I am practically a normal person again! Well, okay, a totally
bald woman with a big scar down her leg but STILL... I"m feeling like
myself again, and isn't nice to get a message from this address that is
not a rant?
So, the news is that the terrible, nasty, awful chemo is over, over,
over and I am eating and drinking and working and exercising and
feeling pretty good. Next week I will go to Tofino, on the far side of
Vancouver Island, to help my good friend Marie celebrate her 50th
birthday, and the following week Michael, Maddy, Zane and I will head
up to Camp Mather in the Sierras. (Never mind the stupid job!!) I
will start daily radiation treatments in July and continue through most
of the month of August -- so that's it for my summer vacation plans,
although I do get the weekends off! (ha ha, more to the point, the
radiation techs get the weekend off.....) We are sad that this means
our family won't make it to Lake Otisco this summer, or to Lisa's
wedding celebration, or to various other parts of the world where we
might like to be heading. But Mom & Dad, and possibly Leslie, are
planning to visit in August, and Madeleine, at least, has a full
schedule of activities to attend to here in SF. The radiation is not
expected to make me sick or very, very tired, and we're hoping that the
worst thing about it will be the inconvenience of it all. In fact, I'm
thinking that the worst of this treatment is behind me, and once this
course of radiation is through it will just be a matter of regular
monitoring to make sure we totally KICKED THIS CANCER'S BUTT. That's
the plan.
It couldn't have happened this way without all the incredible people I
know and am proud to count as my family and friends. Thank you all for
helping me to get through this! And don't worry - as soon as I have
something absurd to complain about, you'll probably hear from me!
Love,
Marcia
_______________________________________________________________
Mon 05/15/06 08:37 PM
Family and friends: I promised you two more rants, and here they are Time to move on. As I mentioned, one of these has been in the works for a while, and the other is just the same subject as my last email, only dragged out for more pages ( so if you had enough of that tale, skip it).
I'm not sure why I'm writing these things. The whole journey through the cancer world is such a bizarre experience for me - did this really happen? is it really happening to me? - and sending out detailed accounts of it to all my friends and relations feels a bit embarrassing and self-absorbed. But, in fact, I am a bit self-absorbed these days, sorry. This is maybe one way of making the experience mine, not just some surreal Kafkaesque dream in which I find myself, which is often how it seems. (Except the nausea part; that most definitely was me, albeit a spacier not-altogether-there version of me.) But all of you have been with me throughout it in so many ways. Most especially, I appreciate how happy we ALL are that the chemo is over, over over! And I hope this is all that any of you will ever see of that world.
I am doing much, much better - still feeling tired a lot of the time, but that's about it. I went back to my office today and will start working again on a fittingly relaxed schedule, mostly from home. That way I can nap, drink plenty of fluids, and flush the rest of the poison away. Thank you all for the notes, cards, emails, hats, paintings, and good vibes. You are all awesome.
.
Love, Marcia
________________________________________________________
5-05-06
It's been quite a week. I went in on Thursday, April 27 for my second round of chemo, knowing that I would be spending my birthday in the hospital but wanting to get this whole ordeal over with without delay. I celebrated my birthday with a head shave, a new hat, and a party with my family in the hospital corridor (outside the main floor, where children under twelve aren't allowed), featuring popsicles and chocolate truffles. After that, the chemo got pretty rough -- nothing violent, but I felt really miserable and nauseous; couldn't eat or drink or do much of anything. Stil, I was really, really happy to go home on Monday and looking forward to a few days of recuperation and gradually getting back to my nearly normal self in time for the next round. I was half-way done.
The next morning I went out for a walk and, upon my return, passed out on the front porch. I passed out twice more later in the afternoon and was taken by ambulance to the emergency room, where I received 3 liters of intravenous fluids, a CT head scan, and an ankle x-ray. Everything checked out okay, but they admitted me to the hospital cardiac ward for observation. Although I was seriously dehydrated, the doctors thought that three incidents of "sincope" (medical term for fainting*) was unusual, as was the fact that I had no dizzy spells or even any recollection of the events that preceded the incidents. I simply found myself lying on the floor, and wondered what I was doing there. After two more generally miserable days and nights, numerous EKGs, an echocardiogram, a chest x-ray and few pregnancy tests, none of which showed any heart damage or irregularities (or pregnan.cy), they let me out again Thursday night. The attending physician (who also consulted by phone with my oncologist and, this being a research and teaching facility, various other doctors) thought that the sincope was most likely the result of an idiocyncratic heart arrhythmia probably induced by doxyrubicon, one of the chemo drugs I'd been getting. But they also thought, based on these consultations and a review of "the literature", that it would not increase the risk of more such incidents after further treatments. And, although docyrubicon is known to cause these arrythmias within 24 hours after treatment, and also has the potential of causing long-term heart damage in some cases, they didn't think that there was necessarily any connection between those risks - or at least, no such connection had been shown.
I felt markedly better by Thursday --even aside from the discharge - and the food at home is decidedly superior to hospital fare. I was eating and drinking again not just resolutely, but with enjoyment, finally. This morning (Friday) we saw my oncologist. It was a regularly scheduled visit but we were prepared to sit down and hash out all the information, options, risks -- you know the drill by now. But he said just two beautiful words: "You're done." I nearly fell off my chair. (I had to confess that, during one of my darker moments, I was actually hoping to have heart disease so I wouldn't have to do any more chemo.) We did, in fact, hash it all out, and I know that my doctor, who is widely respected if not held in awe by the entire medical community, and has only been wonderful, compassionate, intelligent and charming in my eyes, had thought about this long and hard. In a nutshell it boils down to this: no one knows whether my reaction was to dehydration or to the drugs (and the other chemo drug I'm getting, ifosfamide, also can cause heart damage), but no one really knows whether or not there is any connection between arythmia following chemo and later heart damage, or even between arythmia following one chemo or the next. For that matter, I don't actually have any detectable cancer in my body and no one knows whether the chemo is killing cancer cells or just killing cells. And the regimen of four cycles of chemo, in the case of my type of cancer, is based on nothing more than the fact that "that's the number of rounds they do." No one knows whether one, or two or three is enough, or if five would be better. I've been through two rounds, and given the circumstances that's enough. And finally, in the immortal words of my doctor, "you never wanted to do this chemo in the first place." Amen. The phantoms doing battle in my body have outdone each other, and I'm free.
We really celebrated my birthday, and my freedom, tonight. For now, I have to keep drinking those liquids to flush the last of the poison out of me, get my red blood cell count up and get back to my old self. I will continue to receive injections to raise my red blood cell counts, get a few more scans later in May, and revisit the whole situation with my oncologist after that. (By now, I think I have the most photographed internal parts of anyone now living, although, sadly for the "competition", I'm sure that's nowhere near the case.) I'll still go through radiation treatments once my body has recovered from the chemo, and keep monitoring the situation for the next few years after that. But I feel like the worst is over, and I feel really great about that.
Whoa, this turned out to be longer than I'd planned. Sorry for the excruciating details and the medical misspellings (although I think the usage is correct). I thought I should update my pals, and I'm glad to be ending on what is for me a happy note. I do have a couple of my rants in the works for you hardened gluttons for punishment, one of which details the ordeals of the past week even more exruciatingly but which I hope will end up readable. I do hope to live to a ripe old age without boring everyone I know with endless travelogues through my medical history -- that, like the drugs in my bloodstream, this, too, will pass. There are so many other people out there suffering a whole world of pain far beyond what I've been through; I've been lucky, loved, and blessed. I want you all to know that! I'll keep you posted, but the news for now looks pretty good to me. Love, Marcia * pronounced "sink'- o-pee". Good word, huh?)
syncope: [from the Greek synkope, cutting short] 1. a partial or complete temporary suspension of respiration and circulation due to cerebral schemia: FAINT. 2. the loss of one or more sounds or letters in the interior of a word (as in fo'c'sle for forecastle).
How about a seemingly related musical term, syncopation? Interesting
posted by HoJo at 2:50 PM
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