(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.
Sunday, February 27, 2011
Electra & AML: Healthy Person's Guilt
(See all posts related to Electra's ongoing treatment)
You'll have to pardon a bit of self-indulgence at this point, as this is a bit of a philosophical wander. If you wish to skip this borderline narcissistic self-analysis, please feel free to jump to the update, below.
There is a concept in trauma psychology called survivor's guilt. In short (largely because I don't 100% know what I'm talking about and have no psych qualifications whatsoever), survivor's guilt is guilt experienced by those who survive (counter-intuitive, I know!). In the event of a major tragedy, let's say a plane crash, those who survive are often wracked with guilt, doubly so if loved ones perished in the tragedy. Typical thoughts are along the lines of "Why did they die and I survived?". Even though that person had no control over their fate, nor the fate of others, they feel guilty at the thought that their loved ones did nothing wrong, and often nothing different, yet perished in the incident.
Sometimes, I think the same thing applies in a case like this one. Electra is a very healthy person. She eats better than I do, exercises more than I do, avoids alcohol more fastidiously than I do and just generally maintains a better lifestyle in many ways than I. In other areas, we're on par: we don't smoke, do drugs, work with hazardous chemicals, etc. So by any measure, she should be healthier than I. Yet I sit in her hospital room alert, fairly well-rested and healthy, while she struggles with fatigue, nausea and other ailments, all down to her cancer, or the treatment thereof. For no rhyme or reason, she is sick and I am not.
I know life isn't fair, and I certainly don't expect that it should be so. I don't believe in fate, or god. I don't think there is a grand plan for the universe, and so the concept of a cosmic balance is anathema to my view of life. Yet as much as I may know this to be the case, I can find it hard to believe, to really internalise. And so I do feel guilty sometimes, and I suspect many others who love her feel likewise. The main way in which this guilt manifests itself is the feeling that I'm not doing enough. I call this "healthy person's guilt".
Now, before I go further, let me be crystal clear: this is absolutely not a fishing-for-compliments attempt. I know logically that I am helping and am not looking for reassurances of that fact. Further, for reasons I'm not entirely clear on, I don't take compliments terribly well, so I sincerely am not looking for any kind of ego boost from this, so please do not construe it as such.
Instead, the point I'm trying to make is that this feeling is endemic to these types of situations. Part of it is my own tendency to set lofty goals and then follow-through poorly. When Electra's condition came to light, I had visions of doing reams of research into the condition, the treatment, case studies and support groups, and intended to work towards becoming an AML expert, insofar as is possible for someone untrained in human biology and medical science. Instead, I've done none of this. I still provide care and support, the research side has gone nowhere.
Secondly, it can be tough for me when I'm down south. Now, I hesitate to write this, because I will be reading it to Electra shortly and I don't want her to think for a minute that she's imposing on me in any way or that I'm resentful of the time I spend here. I'm not at all, but Electra isn't exactly immune to needless feelings of guilt. Instead, my point is that while I know (again, in the logical part of my brain) that I need to spend time away for my own well-being and mental health, it can be hard to internalise and I do sometimes feel guilty when I am absent. This visit was preceded by a two-and-a-half-week block in the south, due to work commitments and a doctor's appointment of my own which I couldn't easily reschedule. But 18 days is too long and I won't be away for such an extended period again. I have also been late in arriving the past two days, and have forgotten to bring certain items (books etc.) with me, something else for which I feel guilty.
In the end, this is something I need to work through, and I am. It is hard for me to be away, but it's also re-energising. And I do know that I'm helping, even if that is just to be here, cut her hair, hold her hand and sneak her some chips. A patient's mental well-being is vital to recovery and I know that I am aiding in this way, to some degree. So the important thing to scope out is where I am right and can/should be doing more (i.e. arriving on time for my visits) and where I'm being irrational and self-immolating. In the latter instance, I need to let my logical brain rule more and make peace with the fact that while I cannot wave a magic wand and cure Electra, that I am doing that which is in my power to do in order to help. I just wish I felt like I was doing enough.
UPDATE
So, a general update on progress. Electra is now well and truly in the neutrapenic phase of her second cycle. She finished the chemo a week ago (Saturday the 19th to be specific), and her neutrophils dropped to zero mid-week. She was allowed a brief respite out of the hospital from Monday through Thursday, and has been back in since Thursday morning.
This cycle has been a bit of a mixed bag. The treatment itself was more traumatic (in cycle one, she felt relatively few ill-effects during the first week of the actual application of the chemo, this time around she was weak and nauseous frequently). However, the neutrapenic recovery period has been more varied. In the first cycle, she was walloped pretty hard. I wasn't present but was in frequent touch and I know how tough it truly was for her. Fatigue was constant, nausea frequent and infections common. This time around has been much better. Her energy levels are often OK and her appetite has been pretty good overall. She's been able to be more alert and enthusiastic, both in person and on the phone. However, there are still some serious down points. She is frequented by bouts of discomfort and a general unwell feeling. Eating can often be draining, and she's still not sleeping perfectly. Though she's avoided major infections, she's spiked fevers from time-to-time and has been sweaty or clammy on occasion. But overall, it does give confidence that she can react well to the treatment. Whereas the last neutrapenic phase was an all-out thrashing, this one has played out more like an even-handed battle.
She should be coming out of the neautrapenic phase in a week or so and will hopefully get the following week out of the hospital. I'll be returning to London on Tuesday with the intent of coming up as soon as she's out so we can spend some time together in an environment that's more hospitable (and less hospital heh heh heh).
And I really will try to post more, I promise.
You'll have to pardon a bit of self-indulgence at this point, as this is a bit of a philosophical wander. If you wish to skip this borderline narcissistic self-analysis, please feel free to jump to the update, below.
There is a concept in trauma psychology called survivor's guilt. In short (largely because I don't 100% know what I'm talking about and have no psych qualifications whatsoever), survivor's guilt is guilt experienced by those who survive (counter-intuitive, I know!). In the event of a major tragedy, let's say a plane crash, those who survive are often wracked with guilt, doubly so if loved ones perished in the tragedy. Typical thoughts are along the lines of "Why did they die and I survived?". Even though that person had no control over their fate, nor the fate of others, they feel guilty at the thought that their loved ones did nothing wrong, and often nothing different, yet perished in the incident.
Sometimes, I think the same thing applies in a case like this one. Electra is a very healthy person. She eats better than I do, exercises more than I do, avoids alcohol more fastidiously than I do and just generally maintains a better lifestyle in many ways than I. In other areas, we're on par: we don't smoke, do drugs, work with hazardous chemicals, etc. So by any measure, she should be healthier than I. Yet I sit in her hospital room alert, fairly well-rested and healthy, while she struggles with fatigue, nausea and other ailments, all down to her cancer, or the treatment thereof. For no rhyme or reason, she is sick and I am not.
I know life isn't fair, and I certainly don't expect that it should be so. I don't believe in fate, or god. I don't think there is a grand plan for the universe, and so the concept of a cosmic balance is anathema to my view of life. Yet as much as I may know this to be the case, I can find it hard to believe, to really internalise. And so I do feel guilty sometimes, and I suspect many others who love her feel likewise. The main way in which this guilt manifests itself is the feeling that I'm not doing enough. I call this "healthy person's guilt".
Now, before I go further, let me be crystal clear: this is absolutely not a fishing-for-compliments attempt. I know logically that I am helping and am not looking for reassurances of that fact. Further, for reasons I'm not entirely clear on, I don't take compliments terribly well, so I sincerely am not looking for any kind of ego boost from this, so please do not construe it as such.
Instead, the point I'm trying to make is that this feeling is endemic to these types of situations. Part of it is my own tendency to set lofty goals and then follow-through poorly. When Electra's condition came to light, I had visions of doing reams of research into the condition, the treatment, case studies and support groups, and intended to work towards becoming an AML expert, insofar as is possible for someone untrained in human biology and medical science. Instead, I've done none of this. I still provide care and support, the research side has gone nowhere.
Secondly, it can be tough for me when I'm down south. Now, I hesitate to write this, because I will be reading it to Electra shortly and I don't want her to think for a minute that she's imposing on me in any way or that I'm resentful of the time I spend here. I'm not at all, but Electra isn't exactly immune to needless feelings of guilt. Instead, my point is that while I know (again, in the logical part of my brain) that I need to spend time away for my own well-being and mental health, it can be hard to internalise and I do sometimes feel guilty when I am absent. This visit was preceded by a two-and-a-half-week block in the south, due to work commitments and a doctor's appointment of my own which I couldn't easily reschedule. But 18 days is too long and I won't be away for such an extended period again. I have also been late in arriving the past two days, and have forgotten to bring certain items (books etc.) with me, something else for which I feel guilty.
In the end, this is something I need to work through, and I am. It is hard for me to be away, but it's also re-energising. And I do know that I'm helping, even if that is just to be here, cut her hair, hold her hand and sneak her some chips. A patient's mental well-being is vital to recovery and I know that I am aiding in this way, to some degree. So the important thing to scope out is where I am right and can/should be doing more (i.e. arriving on time for my visits) and where I'm being irrational and self-immolating. In the latter instance, I need to let my logical brain rule more and make peace with the fact that while I cannot wave a magic wand and cure Electra, that I am doing that which is in my power to do in order to help. I just wish I felt like I was doing enough.
UPDATE
So, a general update on progress. Electra is now well and truly in the neutrapenic phase of her second cycle. She finished the chemo a week ago (Saturday the 19th to be specific), and her neutrophils dropped to zero mid-week. She was allowed a brief respite out of the hospital from Monday through Thursday, and has been back in since Thursday morning.
This cycle has been a bit of a mixed bag. The treatment itself was more traumatic (in cycle one, she felt relatively few ill-effects during the first week of the actual application of the chemo, this time around she was weak and nauseous frequently). However, the neutrapenic recovery period has been more varied. In the first cycle, she was walloped pretty hard. I wasn't present but was in frequent touch and I know how tough it truly was for her. Fatigue was constant, nausea frequent and infections common. This time around has been much better. Her energy levels are often OK and her appetite has been pretty good overall. She's been able to be more alert and enthusiastic, both in person and on the phone. However, there are still some serious down points. She is frequented by bouts of discomfort and a general unwell feeling. Eating can often be draining, and she's still not sleeping perfectly. Though she's avoided major infections, she's spiked fevers from time-to-time and has been sweaty or clammy on occasion. But overall, it does give confidence that she can react well to the treatment. Whereas the last neutrapenic phase was an all-out thrashing, this one has played out more like an even-handed battle.
She should be coming out of the neautrapenic phase in a week or so and will hopefully get the following week out of the hospital. I'll be returning to London on Tuesday with the intent of coming up as soon as she's out so we can spend some time together in an environment that's more hospitable (and less hospital heh heh heh).
And I really will try to post more, I promise.
Sunday, February 13, 2011
Electra & AML: Once More Into The Breach Dear Friends
(See all posts related to Electra's ongoing treatment)
So, I haven't really kept up my plan of "post more often, if shorter posts". So let me start with a bit of an update:
Electra is currently back in hospital for round two of treatment. It was a little bit of a rocky road getting in there. The original plan was to have her get her bone marrow treatment on Tuesday the 1st and go back in for round two on Thursday (the 3rd). However, as I mentioned previously, she pushed it back to Thursday. Ultimately, the choice between painful procedure versus less painful procedure and additional weekend of freedom with myself was an easy choice. So in the end, she was scheduled to go back in on Monday (the 7th).
However, best laid plans being as they are, even this was ultimately altered. The ward she's in had no available beds, so she was asked to try again on Tuesday. Evidently, even though the first cycle must be administered with the utmost urgency, once wiped out the malformed "blast" cells take some time to come back, so the push to recommence is lessened. So she came back on Tuesday, when a bed freed up. However, still things were not as required. In the intervening time, Electra managed to pick up a nasty infection (probably another iteration of her recurring throat infection). Since chemo decimates one's immune system, they are loathe to start it while the patient is already ill. So, intravenous and oral antibiotics were the course of choice. The idea was to tackle the infection first and foremost, then commence chemo.
And yesterday (Saturday the 12th) was the kickoff. The infection had raged a bit, and Electra had been kept in the hospital the entire time for the sake of monitoring and administration of the antiobiotics. But by Friday, things were calming down and she was pushing to get chemo started on Saturday (as weird as it is to request the injection of poison into your veins, an early start does of course correspond to an early cessation). And she was successful! So she is currently (as I write this) completing her second day of round two.
This time around, though, it's been harder. We knew it would be, of course, so were somewhat prepared. But because her system was already at less than 100% when the treatment started, all the effects have been worse than the first time around. Cycle one didn't start to get bad until at least half-way through; cycle two started to get bad about a half-hour into the treatment. The symptoms were as before: nausea, fatigue, chills, etc. But this time they seemed much worse. Fortunately, Electra is getting better at asking for help in these instances (though it still takes some prodding from yours truly), and the anti-nausea meds have done a reasonable job.
On my end, the push back on the start date of chemo affected my plans. I'd intended to go up today, but Electra and I decided that it was best to have me present for the week after the actual chemo application (which is generally the hardest week and the one where she really needs support). So I've bumped it back until Wednesday the 23rd (due to a doctor's appointment of my own and a work commitment, I can't leave until that Wednesday). This will be the longest stretch we've had apart since this whole shebang started, and it will be very tough for both of us I think. I miss Electra quite a lot and though I know it's dumb, can't help but feel that I'm not doing my duty and really should be up there. Electra for her part, misses the comfort and support that I can provide, though she's been very clear that it's good for me to spend time in the South and not be a martyr in this. Plus, this longer period of time allows me to get some things done that I've been putting off too long. When I'm only home for a week at a time, I tend to triage much more than during longer breaks: I only deal with the most pressing "to do" items, so the myriad of little things I want to work on tend to slip. This longer break will give me a chance to correct that. But that doesn't mean it's not hard.
So, the treatment continues. This cycle promises to be harder than the first, a daunting prospect no doubt. But as usual, I am cautiously optimistic. Electra's progress during the first cycle was incredibly promising, and although there were bumps in the road in terms of infections and side-effects, these are to be expected and the key signs (response to the chemo and bounce-back time of her immune system) all point to a course of treatment bound for success. Doesn't mean I'm not keeping my fingers crossed while knocking on wood and rubbing a rabbit's foot wrapped around a four-leaf clover, but hope is present.
So, I haven't really kept up my plan of "post more often, if shorter posts". So let me start with a bit of an update:
Electra is currently back in hospital for round two of treatment. It was a little bit of a rocky road getting in there. The original plan was to have her get her bone marrow treatment on Tuesday the 1st and go back in for round two on Thursday (the 3rd). However, as I mentioned previously, she pushed it back to Thursday. Ultimately, the choice between painful procedure versus less painful procedure and additional weekend of freedom with myself was an easy choice. So in the end, she was scheduled to go back in on Monday (the 7th).
However, best laid plans being as they are, even this was ultimately altered. The ward she's in had no available beds, so she was asked to try again on Tuesday. Evidently, even though the first cycle must be administered with the utmost urgency, once wiped out the malformed "blast" cells take some time to come back, so the push to recommence is lessened. So she came back on Tuesday, when a bed freed up. However, still things were not as required. In the intervening time, Electra managed to pick up a nasty infection (probably another iteration of her recurring throat infection). Since chemo decimates one's immune system, they are loathe to start it while the patient is already ill. So, intravenous and oral antibiotics were the course of choice. The idea was to tackle the infection first and foremost, then commence chemo.
And yesterday (Saturday the 12th) was the kickoff. The infection had raged a bit, and Electra had been kept in the hospital the entire time for the sake of monitoring and administration of the antiobiotics. But by Friday, things were calming down and she was pushing to get chemo started on Saturday (as weird as it is to request the injection of poison into your veins, an early start does of course correspond to an early cessation). And she was successful! So she is currently (as I write this) completing her second day of round two.
This time around, though, it's been harder. We knew it would be, of course, so were somewhat prepared. But because her system was already at less than 100% when the treatment started, all the effects have been worse than the first time around. Cycle one didn't start to get bad until at least half-way through; cycle two started to get bad about a half-hour into the treatment. The symptoms were as before: nausea, fatigue, chills, etc. But this time they seemed much worse. Fortunately, Electra is getting better at asking for help in these instances (though it still takes some prodding from yours truly), and the anti-nausea meds have done a reasonable job.
On my end, the push back on the start date of chemo affected my plans. I'd intended to go up today, but Electra and I decided that it was best to have me present for the week after the actual chemo application (which is generally the hardest week and the one where she really needs support). So I've bumped it back until Wednesday the 23rd (due to a doctor's appointment of my own and a work commitment, I can't leave until that Wednesday). This will be the longest stretch we've had apart since this whole shebang started, and it will be very tough for both of us I think. I miss Electra quite a lot and though I know it's dumb, can't help but feel that I'm not doing my duty and really should be up there. Electra for her part, misses the comfort and support that I can provide, though she's been very clear that it's good for me to spend time in the South and not be a martyr in this. Plus, this longer period of time allows me to get some things done that I've been putting off too long. When I'm only home for a week at a time, I tend to triage much more than during longer breaks: I only deal with the most pressing "to do" items, so the myriad of little things I want to work on tend to slip. This longer break will give me a chance to correct that. But that doesn't mean it's not hard.
So, the treatment continues. This cycle promises to be harder than the first, a daunting prospect no doubt. But as usual, I am cautiously optimistic. Electra's progress during the first cycle was incredibly promising, and although there were bumps in the road in terms of infections and side-effects, these are to be expected and the key signs (response to the chemo and bounce-back time of her immune system) all point to a course of treatment bound for success. Doesn't mean I'm not keeping my fingers crossed while knocking on wood and rubbing a rabbit's foot wrapped around a four-leaf clover, but hope is present.
Thursday, February 03, 2011
Electra & AML: The Eye of the Storm
(See all posts related to Electra's ongoing treatment)
This week has been one of respite, a nice change from the tedium, monotony and frustration of the hospital life: since last Friday (January 28th), Electra has been home from the hospital. Her neutrophils are up (as I mentioned earlier, these are the most common type of white blood cell and the chief weapon in the body's immune system). The measured level was sufficiently high that the hospital decided they'd had enough of her and kicked her out for some much-needed R&R (I may be paraphrasing the reasoning a little).
Unfortunately, due to a series of prior commitments I'd made when we'd assumed she'd be in the hospital much longer, I was confined to London for the weekend and Monday (I had an immovable presentation on Monday morning). So to my chagrin, I would miss the first weekend that Electra was to spend in comparative freedom, a rare gift in these times. We had various things to look forward to in home time-pancakes, sleeping in and movie nights principle amongst them. But alas, it was not to be. The schedule, as dictated by the hospital, was a blood test Monday, followed by a bone marrow test Tuesday and readmission to the hospital Thursday.
Monday went comparatively as planned, save for a return of the sore throat which originally triggered the tests leading to Electra's diagnosis. However, an examination showed this as nothing to be terribly worried about, and indeed it has faded since then. The car ride to and from the hospital drained Electra a lot, and she cancelled her planned evening with friends on Monday. That same day, I left directly from work and drove back up to Worcestershire, not the safest drive I've ever made as a result of my fatigue (another rant for another day), but I made it.
On Tuesday, Electra's imagination got the better of her. See, the first bone marrow test was intensely unpleasant for her, hardly surprising since it involves a large-gauge needle poking a hole in the back of one's hip bones. The problem is that while the test really is unpleasant, the thought of that unpleasantness can be daunting, and Electra found it difficult to go through a second time and asked the doctor if it were possible to be sedated. It was, but it meant she'd have to come back Thursday. This in turn meant she wouldn't be readmitted until Monday. When faced with the choice of pain and fear or free sedatives and another weekend at home (with me this time!), the choice was pretty straightforward. Even when I'm being hardest on myself, I still generally believe I'm preferable to a giant hip needle.
Yesterday (Wednesday) was a lovely evening out with four of Electra's friends. I haven't asked them for permission to use their names so they'll stay anonymous for not, but it was two couples, Electra's father and Electra & I. We went to a lovely little pub up the road from Electra's place, and had a very nice evening. It was also Electra's first time wearing the wig she got on the NHS scheme. It's very similar to her natural colour, though perhaps a touch more red in the highlights. It's semi-wavy and just to the shoulder. She looks good in it, and you wouldn't know it was a wig except that she hasn't figured out how to scratch her head without shifting around dramatically.
Today, then, was the revised date for the bone marrow biopsy. It all went well except that the sedatives didn't really kick in until about half an hour after the procedure. So Electra was lucid and somewhat pained by the procedure then loopy and happy and fun after the fact. Electra after sedation is similar to Electra after a few G&T's: friendly, loving, excited to see everyone, waving to passersby, and with a tendency to ramble on a bit, specifically about people and things she loves. Very endearing across the board.
Weeks like this are vital to the healing process, in my feeling. When dealing with something like cancer, there is a tendency for it to overwhelm every aspect of one's life. As a carer, I find this tough to escape: I take time for myself and spend some time just living and not thinking about cancer to whatever extent I can. But my thoughts wander as thoughts so often do. And they often drift back. In some ways, it's like when I was working on my Ph.D.; even when I took a night off, the shadow of my thesis loomed large, forever in the periphery of whatever I did. Some of this comes from wanting to keep people updated, and people checking in. And I really love that people care enough to want updates and don't ever want anyone to stop asking, but of course it makes forgetting about cancer-even for a day-difficult. Again, this is like the inevitable question I got during my postgrad ("How's the research/thesis going?" followed by the more-inevitable answer: "Rubbish. More beer please!").
So that makes this limited calm-in-between-storms all the more important. Because the shadow looms as dark and large as ever, but for awhile, we get to turn on an extra light or two and banish the dusk to the very corners of our lives. We get to watch mediocre TV, eat real meals, fall asleep and wake up together. And that break, that evanescent suspension of disbelief that life is as it was two months ago, helps provide the fortitude to persevere through the bad times. It is the security blanket of hope and reassurance that this, too, will end and normalcy and health will be restored. I only wish we had longer before the next onslaught.
On a more "meta" note, I'm hoping to slightly shift the way I make these posts. The dilemma of the lengthier posts such as this one is that writing them takes sufficiently long that I tend to put it off. Which of course gives me more to report one. So my new plan is to post more frequently, but shorter. So please stay tuned, and I'll try to fulfil that promise.
This week has been one of respite, a nice change from the tedium, monotony and frustration of the hospital life: since last Friday (January 28th), Electra has been home from the hospital. Her neutrophils are up (as I mentioned earlier, these are the most common type of white blood cell and the chief weapon in the body's immune system). The measured level was sufficiently high that the hospital decided they'd had enough of her and kicked her out for some much-needed R&R (I may be paraphrasing the reasoning a little).
Unfortunately, due to a series of prior commitments I'd made when we'd assumed she'd be in the hospital much longer, I was confined to London for the weekend and Monday (I had an immovable presentation on Monday morning). So to my chagrin, I would miss the first weekend that Electra was to spend in comparative freedom, a rare gift in these times. We had various things to look forward to in home time-pancakes, sleeping in and movie nights principle amongst them. But alas, it was not to be. The schedule, as dictated by the hospital, was a blood test Monday, followed by a bone marrow test Tuesday and readmission to the hospital Thursday.
Monday went comparatively as planned, save for a return of the sore throat which originally triggered the tests leading to Electra's diagnosis. However, an examination showed this as nothing to be terribly worried about, and indeed it has faded since then. The car ride to and from the hospital drained Electra a lot, and she cancelled her planned evening with friends on Monday. That same day, I left directly from work and drove back up to Worcestershire, not the safest drive I've ever made as a result of my fatigue (another rant for another day), but I made it.
On Tuesday, Electra's imagination got the better of her. See, the first bone marrow test was intensely unpleasant for her, hardly surprising since it involves a large-gauge needle poking a hole in the back of one's hip bones. The problem is that while the test really is unpleasant, the thought of that unpleasantness can be daunting, and Electra found it difficult to go through a second time and asked the doctor if it were possible to be sedated. It was, but it meant she'd have to come back Thursday. This in turn meant she wouldn't be readmitted until Monday. When faced with the choice of pain and fear or free sedatives and another weekend at home (with me this time!), the choice was pretty straightforward. Even when I'm being hardest on myself, I still generally believe I'm preferable to a giant hip needle.
Yesterday (Wednesday) was a lovely evening out with four of Electra's friends. I haven't asked them for permission to use their names so they'll stay anonymous for not, but it was two couples, Electra's father and Electra & I. We went to a lovely little pub up the road from Electra's place, and had a very nice evening. It was also Electra's first time wearing the wig she got on the NHS scheme. It's very similar to her natural colour, though perhaps a touch more red in the highlights. It's semi-wavy and just to the shoulder. She looks good in it, and you wouldn't know it was a wig except that she hasn't figured out how to scratch her head without shifting around dramatically.
Today, then, was the revised date for the bone marrow biopsy. It all went well except that the sedatives didn't really kick in until about half an hour after the procedure. So Electra was lucid and somewhat pained by the procedure then loopy and happy and fun after the fact. Electra after sedation is similar to Electra after a few G&T's: friendly, loving, excited to see everyone, waving to passersby, and with a tendency to ramble on a bit, specifically about people and things she loves. Very endearing across the board.
Weeks like this are vital to the healing process, in my feeling. When dealing with something like cancer, there is a tendency for it to overwhelm every aspect of one's life. As a carer, I find this tough to escape: I take time for myself and spend some time just living and not thinking about cancer to whatever extent I can. But my thoughts wander as thoughts so often do. And they often drift back. In some ways, it's like when I was working on my Ph.D.; even when I took a night off, the shadow of my thesis loomed large, forever in the periphery of whatever I did. Some of this comes from wanting to keep people updated, and people checking in. And I really love that people care enough to want updates and don't ever want anyone to stop asking, but of course it makes forgetting about cancer-even for a day-difficult. Again, this is like the inevitable question I got during my postgrad ("How's the research/thesis going?" followed by the more-inevitable answer: "Rubbish. More beer please!").
So that makes this limited calm-in-between-storms all the more important. Because the shadow looms as dark and large as ever, but for awhile, we get to turn on an extra light or two and banish the dusk to the very corners of our lives. We get to watch mediocre TV, eat real meals, fall asleep and wake up together. And that break, that evanescent suspension of disbelief that life is as it was two months ago, helps provide the fortitude to persevere through the bad times. It is the security blanket of hope and reassurance that this, too, will end and normalcy and health will be restored. I only wish we had longer before the next onslaught.
On a more "meta" note, I'm hoping to slightly shift the way I make these posts. The dilemma of the lengthier posts such as this one is that writing them takes sufficiently long that I tend to put it off. Which of course gives me more to report one. So my new plan is to post more frequently, but shorter. So please stay tuned, and I'll try to fulfil that promise.
Subscribe to:
Comments (Atom)
