(See all posts related to Electra's ongoing treatment)
So, there's a certain topic I have thus far avoided delving into: death. You'll have to excuse me if this post is a little less structured than some of the others, but that is a reflection of my thoughts, which are themselves a little unclear.
The fact of the matter is that this affliction is very serious. I know that's obvious, but I try to focus on the positives as much as possible: the advances in treatment, the high rate of success, the progress that Electra has made so far. But left untreated, AML has a mortality rate of 100%, often within months. The treatments have come a long way (a colleague of mine told me of her aunt who was treated several decades ago at a time when all they could do was a full blood transfusion every week or so). But they are not perfect, and as we've seen with recent revelations, things do not always go as smoothly as one would hope.
At the end of the day, the odds are good in this case, but nothing is guaranteed. Electra and I had "the death talk" the last time I was up, and she has been pushing me to make sure that I truly accept the possibility; that I genuinely take to heart that the worst possible outcome is possible, no matter how unlikely. She asked me whether I truly accepted that, and to be honest… I just don't know.
In a philosophical sense of the word, of course, we're all dying. Death really is the only thing we can be sure of in life, trite though that might be. And I engage in activities on a regular basis that dramatically increase my chances of dying (I'm thinking specifically of cycling in London, though I have no doubt there are others). So to be in denial about mortality seems foolish. But there's acknowledging that in a logical, academic way, and then there's really taking it to heart. And I don't know if I've done the latter.
I know I don't like to think about it, and definitely don't like to talk about it. Writing this blog post is a way of forcing myself to discuss the topic, and perhaps that's what it'll take to make me really internalise the concept. I guess I'm somewhat in a form of intentional denial; like the proverbial ostrich, perhaps if I refuse to acknowledge the possibility, that chance will disappear. Or perhaps it's simpler than that: I know what's possible, and know how easy it can be to get hung up on that idea and the accompanying fear, and am trying to avoid that. Because I am scared; whether I truly accept it or not, I do know the possible outcomes and there are some I don't want to consider. It may not be the healthiest way of dealing with it, though.
I'm generally a pretty good guy to have around in a crisis. When things go very wrong, I keep my cool, I assess the situation and I tackle things rationally and calmly. I freak out and get stressed by small to medium issues, but when the shit really hits the fan, I tend to become very focused. The upshot of this is that I tend to tackle logistics: what needs to be done, by when, what is the best way to achieve it, etc. My concern, I suppose, is that this coping mechanism may allow me to gloss over the bigger issues, the greater fears and perpetuate my denial, intentional or otherwise. And I'm clever enough to know that's not the healthiest approach in the long run. So I will try to accept it, whatever that means.
I am confident that Electra will pull through this ordeal with flying colours. Two years from now, I expect we will be stronger, healthier and happier than before, and will deal with the long-term ramifications of her treatment as they come (regular checkups, possible long-term medication requirements, etc.) I really do feel this is the case. But the shadow of that grim spectre does loom, quietly and forebodingly in the corner of my awareness, and it's time for me to accept his presence. I am confident that we will stave off his advances, but I should not (nay, cannot) ignore his existence.
Sunday, March 20, 2011
Monday, March 07, 2011
Electra & AML: The Other Shoe
(See all posts related to Electra's ongoing treatment)
This past week has not been easy. Throughout the course of Electra's treatment, there have been many hard times; when she's felt so sick she can't move, so tired she can barely speak or has been in such pain that she can do neither. But throughout all of this, we've had the positive outlook provided by the knowledge that all the key signs were pointing in the right direction. Electra had gone into remission after the first cycle, she was reacting well to the chemo and recovering quickly and generally her system was behaving the way one would hope. This made the tough times easier to deal with: you expect there to be some setbacks along the way (infections, fatigue, pain). But we were comforted to know that the key metrics, those that give the best indication of how she will react to the treatment, all showed positive. This past week, that all changed. I should note here that I haven't done much research into this yet, so it's quite possible I'll misunderstand some of this and so much of what I say here might be inaccurate, but I'll do my best from what I do understand.
Last Wednesday, Electra got test results back from her last bone marrow biopsy, which were taken after she completed her first round of chemo, several weeks ago. These results take longer to process because they involve genetic analysis. And the results showed the presence of a chromosome abnormality called Trisomy 8, meaning an extra set of genes on chromosome 8. This was detected initially, but the expectation was that the chemotherapy would eradicate this abnormality. It has failed to do so.
The upshot of this is that the chemo is likely to wipe out Electra's cancer, but it will return; maybe in a few months, maybe in a few years, but it will come back. Since chemo is by no means a silver bullet, and in fact should be avoided as much as possible, one cannot simply sit back and wait for a recurrence and hit it again with chemo (and why would you want to given the effects of the treatment?) So they are going to need to go with a more extreme type of treatment. Specifically, it looks like Electra will now almost certainly need a bone marrow transplant and possibly full-body radiotherapy.
The good news is that her brother Phillip is an excellent match for bone marrow donation (and apparently he doesn't even have to get a giant needle in the back to do it, they can now extract stem cells from his blood and grow the marrow, which is quite frankly awesome). And further, this treatment should have a positive outcome in the end, as the success rate is very high.
The downside is that the treatment is even harder to deal with than chemo alone. I don't want to overstate it, so I will write another post once I've done my research, but from what I know so far, it means that the recovery time is much longer, being measured in years not months. It means strict limits on interactions with children (obviously very limiting for Electra's career as a paediatric speech and language therapist), and strict limits on travel, especially foreign travel. It means she will be unable to make it to the wedding in June for which I'm best man, it means our travel plans to Rome, Munich and more are gone; it changes quite a lot. It also means that she will have to leave the Royal Worcester Hospital behind as they are simply not equipped to treat someone with this particular aberration. She will likely be moved to Birmingham, though we need to meet with a specialist to discuss where she would receive the best care and environment, and where she would be the happiest. But it makes everything much more complicated with visiting, and housing and all the rest.
On top of all that, Electra's neutrapenic phase has hit her like a ton of bricks. Apparently, my assessment of it as not-quite-as-bad-as-last-time was premature. It's now gotten much, much worse. She's picked up an infection again, so is running periodic fevers. She's tired a lot. But more than anything else, she's in pain. Almost constantly now. It seems she has picked up a potential fistula or fissure and will likely require surgery to correct it. That, however, has to wait until her immune system is back and her infection cleared. So in the meantime, she must endure agony and an increased risk of infection from that very fistula. It's a delicate balancing act between the risks of the surgery and the risks of infection that the surgery would help reduce. The end result is days or weeks of pain.
Electra has dealt with this well overall, though it's been the first real blow to her confidence and stoicism. Having to shift from "hard to deal with but ultimately good progress" to "actually much worse than we'd thought" has been tough. I admire her ability to stick with it, even if it takes some prodding from yours truly to get her there. But this whole discovery has been truly off-putting and has really hit her quite hard. Physically, it's been difficult and the painkillers (now at a much high dose) only just barely take the edge of some of the time. But emotionally, I think it has taken some of the wind from her sails. That being said, Electra will always regroup and come back even stronger and more determined, and I know that she will tackle this head-on and with tenacity.
As for myself, I don't know how well I'm handling it. I know it'll be OK in the end, but it's hit me pretty hard as well. I guess I hadn't realised exactly how much emphasis I'd put on the so-far positive results we'd seen from the tests. I'm still getting through the day, but have found myself angrier, run-down and less focused than before. I've had a few drinks, perhaps more than I should've, though I've pushed myself now to hold back on that, for fear that I could self-medicate too much. And of course, I stress eat, as I always do. Between that and my lack of gym motivation, the trousers and shirts are starting to feel a wee bit more snug than before. But I guess that's my normal arc: depression, followed by anger and frustration, followed by nose-to-the-grindstone and determination. And I think I'm moving into that phase now, so I will get back on that horse. But I'm not exactly cheered up by it all.
All is of course not lost. As I said, the long-term outcome of this treatment is good, and all our travel plans and the rest are not cancelled; merely delayed. But I would say that this has probably been the worst, most demoralising week we've had thus far.
This past week has not been easy. Throughout the course of Electra's treatment, there have been many hard times; when she's felt so sick she can't move, so tired she can barely speak or has been in such pain that she can do neither. But throughout all of this, we've had the positive outlook provided by the knowledge that all the key signs were pointing in the right direction. Electra had gone into remission after the first cycle, she was reacting well to the chemo and recovering quickly and generally her system was behaving the way one would hope. This made the tough times easier to deal with: you expect there to be some setbacks along the way (infections, fatigue, pain). But we were comforted to know that the key metrics, those that give the best indication of how she will react to the treatment, all showed positive. This past week, that all changed. I should note here that I haven't done much research into this yet, so it's quite possible I'll misunderstand some of this and so much of what I say here might be inaccurate, but I'll do my best from what I do understand.
Last Wednesday, Electra got test results back from her last bone marrow biopsy, which were taken after she completed her first round of chemo, several weeks ago. These results take longer to process because they involve genetic analysis. And the results showed the presence of a chromosome abnormality called Trisomy 8, meaning an extra set of genes on chromosome 8. This was detected initially, but the expectation was that the chemotherapy would eradicate this abnormality. It has failed to do so.
The upshot of this is that the chemo is likely to wipe out Electra's cancer, but it will return; maybe in a few months, maybe in a few years, but it will come back. Since chemo is by no means a silver bullet, and in fact should be avoided as much as possible, one cannot simply sit back and wait for a recurrence and hit it again with chemo (and why would you want to given the effects of the treatment?) So they are going to need to go with a more extreme type of treatment. Specifically, it looks like Electra will now almost certainly need a bone marrow transplant and possibly full-body radiotherapy.
The good news is that her brother Phillip is an excellent match for bone marrow donation (and apparently he doesn't even have to get a giant needle in the back to do it, they can now extract stem cells from his blood and grow the marrow, which is quite frankly awesome). And further, this treatment should have a positive outcome in the end, as the success rate is very high.
The downside is that the treatment is even harder to deal with than chemo alone. I don't want to overstate it, so I will write another post once I've done my research, but from what I know so far, it means that the recovery time is much longer, being measured in years not months. It means strict limits on interactions with children (obviously very limiting for Electra's career as a paediatric speech and language therapist), and strict limits on travel, especially foreign travel. It means she will be unable to make it to the wedding in June for which I'm best man, it means our travel plans to Rome, Munich and more are gone; it changes quite a lot. It also means that she will have to leave the Royal Worcester Hospital behind as they are simply not equipped to treat someone with this particular aberration. She will likely be moved to Birmingham, though we need to meet with a specialist to discuss where she would receive the best care and environment, and where she would be the happiest. But it makes everything much more complicated with visiting, and housing and all the rest.
On top of all that, Electra's neutrapenic phase has hit her like a ton of bricks. Apparently, my assessment of it as not-quite-as-bad-as-last-time was premature. It's now gotten much, much worse. She's picked up an infection again, so is running periodic fevers. She's tired a lot. But more than anything else, she's in pain. Almost constantly now. It seems she has picked up a potential fistula or fissure and will likely require surgery to correct it. That, however, has to wait until her immune system is back and her infection cleared. So in the meantime, she must endure agony and an increased risk of infection from that very fistula. It's a delicate balancing act between the risks of the surgery and the risks of infection that the surgery would help reduce. The end result is days or weeks of pain.
Electra has dealt with this well overall, though it's been the first real blow to her confidence and stoicism. Having to shift from "hard to deal with but ultimately good progress" to "actually much worse than we'd thought" has been tough. I admire her ability to stick with it, even if it takes some prodding from yours truly to get her there. But this whole discovery has been truly off-putting and has really hit her quite hard. Physically, it's been difficult and the painkillers (now at a much high dose) only just barely take the edge of some of the time. But emotionally, I think it has taken some of the wind from her sails. That being said, Electra will always regroup and come back even stronger and more determined, and I know that she will tackle this head-on and with tenacity.
As for myself, I don't know how well I'm handling it. I know it'll be OK in the end, but it's hit me pretty hard as well. I guess I hadn't realised exactly how much emphasis I'd put on the so-far positive results we'd seen from the tests. I'm still getting through the day, but have found myself angrier, run-down and less focused than before. I've had a few drinks, perhaps more than I should've, though I've pushed myself now to hold back on that, for fear that I could self-medicate too much. And of course, I stress eat, as I always do. Between that and my lack of gym motivation, the trousers and shirts are starting to feel a wee bit more snug than before. But I guess that's my normal arc: depression, followed by anger and frustration, followed by nose-to-the-grindstone and determination. And I think I'm moving into that phase now, so I will get back on that horse. But I'm not exactly cheered up by it all.
All is of course not lost. As I said, the long-term outcome of this treatment is good, and all our travel plans and the rest are not cancelled; merely delayed. But I would say that this has probably been the worst, most demoralising week we've had thus far.
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