(See all posts related to Electra's ongoing treatment)
I am writing this post from my friend's apartment in Toronto. You see, for some time, I've had a trip to Canada planned. This is specifically for my friend Howard's wedding (for which I'm best man) but more generally, I've orchestrated a vacation and series of visits around that one event. As a result, I've been back in Canada for nearly a week now, with another week and a half to go.
This is my first time being truly away from Electra since her diagnosis. I've been in London much of the time, of course, but not truly away to the degree I am now. Though we're in frequent contact by Skype, it is the longest we will have gone without in-person time (from the last time I was in Birmingham to the earliest time I'll be even able to get back will be roughly a month) and also by far the greatest distance between us. This is simultaneously very difficult and somewhat relieving.
It is difficult, because I know that a Skype call isn't the same as a visit or even a phone call, and it's difficult not to feel like I'm failing to provide adequate support during her recovery. One of my philosophies in life has been that you can't do everything, but you should that which you can. In this instance, I cannot do anything medically, but the support and comfort I can give allows me to contribute, and so I do what I can and provide that where possible. At the moment, I cannot do that. I still call daily, and try to call right before her bedtime, but the latter isn't always possible, and I cannot guarantee the former will be at all times. So it can feel like I'm unable to provide the one type of assistance I've been able to give thus far. It's also difficult to hear about progress, both good and bad, and not be acutely aware of the fact that I'm not there to witness it.
However, I do feel that it's providing me some much-needed respite for myself. Over the past few weeks I've started to see myself getting more and more tired, more and more stressed. This too makes me a poor carer, and is why everyone (including Electra) is careful to remind me to take care of myself. So getting away from the situation and responsibilities, if only for awhile (and while still being in contact) allows me to recharge my batteries a little bit. I've greatly enjoyed catching up with friends here, sleeping and eating and just generally being able to relax and reflect a little bit. With cancer, there is a tendency for it to dominate your thoughts to such an extent that it's difficult to avoid it weighing heavily on your mind. So to be able to have some time away is important to one's sanity and a welcome change.
But I think, despite these potentially conflicting emotions, that I can maximise this opportunity. I'm here for a total of two and a half weeks. In the grad scheme of things, not that long. But enough to reinvigorate myself rather dramatically and get some much-needed R&R. I am still in touch daily as I've said, so I don't feel negligent or too far removed. And I know that in the end, this will give me the strength to return twice as strong to the UK, and that I will be much better equipped to provide the necessary support if I let myself relax a little and truly enjoy my time here. And that's what I've been doing so far.
Status Update: Electra is currently out of hospital, and recuperating at home in the rental flat in Birmingham. She was released from the hospital far earlier than expected, and has been able to arrange a less-frequent visit schedule, due to her rapid recovery. She'd been expected to have to go to the hospital thrice weekly for six weeks, but that wasn't much more than a week and a half, and she's now down to weekly visits. This is due to the doctor's confidence in her recovery. So all signs are pointing up.
However, the process itself is still quite unpleasant. This time around, the biggest problem has been a general sense of discomfort and being ill-at-ease. Electra cannot seem to find any position, sitting or laying, in which she is comfortable. As you can imagine, this makes sleeping difficult. She's also started to get hit by the acute boredom of one trapped at home for extended periods of time. However, her fatigue and trouble focusing (which we call "chemo brain") has made it such that any activity that would alleviate such boredom, including TV, reading or even listing to the radio, is taxing. So it's a bit of a paradox: bored by the lack of anything to do, but unable to do anything to alleviate the boredom.
Also, within the last few days, we've seen the first signs of what is potentially Graft Versus Host Disease, or GVHD. Acute GVHD is the big worry at this stage, as it is the body turning against the new bone marrow, with catastrophic results. However, the doctors have said that a small degree of GVHD is actually good, as it essentially kicks the new immune system into gear. She's had it looked at and the docs were confident enough that she wasn't required to stay in hospital. So while it's unfortunate that's she's experienced this (in the form of a rash on her arm), it appears that it's not too alarming, so I'm confident in her progress.
At this point, though the process is unpleasant and the days difficult, all the key metrics seem to point towards as speedy a recovery as possible, given the treatment she's undergone. Fingers crossed!
Monday, June 13, 2011
Wednesday, May 25, 2011
Electra & AML: My Work
(See all posts related to Electra's ongoing treatment)
There's been one aspect of this whole affair which has really made things a lot easier, and it's something to which I feel I should give proper credit: my work. I'm not sure what company policy is in discussing the company by name in a public forum, so I'll leave it out for now; suffice to say that if you know me in person, you either know for whom I work or can ask me.
Overall, my job is pretty good. The people I work with are great and the environment is very welcoming. Although it's not what I would do with my free time were I a billionaire, as jobs go it's pretty decent, albeit underpaying. However, in response to this particular crisis, my workplace, and my line manager in particular, have really gone beyond what one could reasonably expect.
I called my line manager on January 1st, the day after Electra was diagnosed, and he was kind enough to answer; had I been in his place I probably would've ignored a work call on New Years Day, so he's already earning some brownie points. In my discussion with him, I explained the situation and prognosis, and my hope to be able to spend more time than usual with Electra while she underwent treatment, especially during the gaps between her parents' visits. His response, in so many words was "Don't worry about it. Focus on getting her well and let us know how we can support you and we will do so".
And this has been the case in practice. I spent the first week working remotely from Worcester, and met with my manager when I got back to Guildford (the city in which my office is located). I sat down with him to discuss a plan and he was again very supportive, indicating that I could take time off with shorter notice than normal, work remotely when necessary, etc.
The plan I've come up with is to spend roughly every other week in Birmingham (previously in Worcester), and to work remotely from Electra's flat. I'm fortunate in that much of the job that I do can be accomplished remotely, and others in my organisation work remotely with varying degrees of regularity, so the action isn't unprecedented. I've brought up a monitor and keyboard, bought a desk and chair, and have thus setup a little office in Electra's place. I work during the day (connected to the company's VPN), and visit Electra at night. During the other weeks, I work from the office in Guildford.
Being able to do this has truly been a boon to my sanity and Electra's comfort. Dealing with this situation is never fun, but would be so much worse, were I required to see her only on weekends and evenings; the latter is especially inconvenient and was untenable while she was in Worcester. I've observed this with one of my closest friends, whose boyfriend at the time had to undergo cancer treatment. She was told by her firm that she was to be at her desk during standard business hours and could visit only on her off time. Needless to say, this made things much more difficult.
During an ongoing treatment like this one, it is often the little victories that matter, and carry the most weight. This particular victory isn't really little, but obviously pales in comparison to any pending wins on the health front. But because my employer has been so understanding and so flexible, it has permitted me to spend more time with Electra when she needs it most, and that's a win for both of us, and I respect and commend them for that. They have earned quite a bit of loyalty from me for their actions.
There's been one aspect of this whole affair which has really made things a lot easier, and it's something to which I feel I should give proper credit: my work. I'm not sure what company policy is in discussing the company by name in a public forum, so I'll leave it out for now; suffice to say that if you know me in person, you either know for whom I work or can ask me.
Overall, my job is pretty good. The people I work with are great and the environment is very welcoming. Although it's not what I would do with my free time were I a billionaire, as jobs go it's pretty decent, albeit underpaying. However, in response to this particular crisis, my workplace, and my line manager in particular, have really gone beyond what one could reasonably expect.
I called my line manager on January 1st, the day after Electra was diagnosed, and he was kind enough to answer; had I been in his place I probably would've ignored a work call on New Years Day, so he's already earning some brownie points. In my discussion with him, I explained the situation and prognosis, and my hope to be able to spend more time than usual with Electra while she underwent treatment, especially during the gaps between her parents' visits. His response, in so many words was "Don't worry about it. Focus on getting her well and let us know how we can support you and we will do so".
And this has been the case in practice. I spent the first week working remotely from Worcester, and met with my manager when I got back to Guildford (the city in which my office is located). I sat down with him to discuss a plan and he was again very supportive, indicating that I could take time off with shorter notice than normal, work remotely when necessary, etc.
The plan I've come up with is to spend roughly every other week in Birmingham (previously in Worcester), and to work remotely from Electra's flat. I'm fortunate in that much of the job that I do can be accomplished remotely, and others in my organisation work remotely with varying degrees of regularity, so the action isn't unprecedented. I've brought up a monitor and keyboard, bought a desk and chair, and have thus setup a little office in Electra's place. I work during the day (connected to the company's VPN), and visit Electra at night. During the other weeks, I work from the office in Guildford.
Being able to do this has truly been a boon to my sanity and Electra's comfort. Dealing with this situation is never fun, but would be so much worse, were I required to see her only on weekends and evenings; the latter is especially inconvenient and was untenable while she was in Worcester. I've observed this with one of my closest friends, whose boyfriend at the time had to undergo cancer treatment. She was told by her firm that she was to be at her desk during standard business hours and could visit only on her off time. Needless to say, this made things much more difficult.
During an ongoing treatment like this one, it is often the little victories that matter, and carry the most weight. This particular victory isn't really little, but obviously pales in comparison to any pending wins on the health front. But because my employer has been so understanding and so flexible, it has permitted me to spend more time with Electra when she needs it most, and that's a win for both of us, and I respect and commend them for that. They have earned quite a bit of loyalty from me for their actions.
Saturday, May 14, 2011
Electra & AML: Spring update-residence
(See all posts related to Electra's ongoing treatment)
As Kevin Smith would say, I'm not going to bury the lead here: Electra was kicked out of her house for having cancer. I'll just pause a second and let that sink in.
There is some more to the story of course, though not as much as one might hope to have it make any kind of sense. For the last year and a half or so, Electra has been living in Stourport, in the west Midlands. She was in a three-person house, renting a single room. Since her AML came to light, her parents have been renting one of the other rooms. This was a convenient arrangement, as it allowed her family to stay close to her; at any given point, there would usually be someone (Electra's mother, father or brother, generally) in their room, and I would be in Electra's (as would she when she was out of the hospital).
Then, in early April, Electra's landlord Keith sent her an email saying that he would "have to give notice" on Electra's room. He claimed to be very sorry, but his mortgage terms were changing, and he needed to rent the entire house out (i.e. all three rooms) starting in May in order to make payments. He further asserted that he was having trouble renting the third room (the master bedroom) because of Electra's "condition"; people would hear about the situation, and then back out.
Now, I understand that the house is a business, and Keith needs to protect his investment. That's fair enough. I can also understand why a potential tenant might be a little uneasy about moving into a house with one tenant who's rarely there, whose boyfriend is around half the time (and working from home all day during that time) and whose parents were sporadically there. But, there are a couple problems with this. First, Electra never told Keith she was OK with his divulging of her very personal medical info. Secondly, considered objectively, there were two rooms that were rented and for the majority of the time, two people there; sometimes myself and her mother, sometimes Electra and her father, etc. But both rooms were paid for fully and both were occupied.
In any event, what's strange is that Keith's claim that he'd ben unable to rent the third room out rather falls apart when it's revealed that the other tenant was informed that someone would move into that selfsame room on May 1st. The tenant was informed of this BEFORE Electra was asked to vacate. So it seems it wasn't that hard after all!
Finally, while I understand that such a decision has to be looked at from a business standpoint, asking someone to move out during the brief window between rounds of chemotherapy is-at best-cold or-at worst-downright heartless. Had Keith come to explain the situation and seek a resolution towards it, no harm would've been done. Instead, he simply stated that he'd have to give notice, but was really sorry. I'm not sure why he was so keen to empty the house by the end of April (the other housemate was also asked to vacate, though that had been planned for sometime and it was merely the date that was set as such). It really seems suspicious to me that he was pushing everyone out all at once.
I feel it necessary to point out, as well, that Electra paid her rent every month, promptly. She kept the house clean, didn't smoke (the only housemate who actually adhered to that rule!) and was basically an ideal tenant in every way. So there's no history of problems to justify such a drastic action. I should also point out that it's definitely illegal to kick someone out for having cancer, and certainly to do so without sufficient notice (though no move-out date was dictated, and end-of-the-month timeframe was certainly alluded to). I haven't decided exactly how i'm planning to respond yet, but I have a range of ideas from "ignore it" to "polite but diffident" to "ruinous". I'll update once we decide.
The upshot of this is that Electra has now moved to Birmingham. She's looked at a place fairly close to the city centre and had planned to buy it anyway, for a number of reasons. But now, instead of having a place in Stourport where she could stay until move-in date (her flat is still under construction), she was forced to move in the midst of her treatment. Luckily, her parents were able to rent a flat in the same development as her new place, but asking someone to do this during the most stressful time of their life is just wrong.
So, yeah. We're in Birmingham now. It's better in many ways-a more interesting city, close to the city centre, more accessible to the hospital, easier for me to come visit, easier for her family to fly into, etc. Birmingham is-in basically every way-a better choice. I just wish that it had been a choice, rather than being foisted upon us by someone else without the decency and compassion to allow a basic amount of leeway for extenuating circumstances.
As Kevin Smith would say, I'm not going to bury the lead here: Electra was kicked out of her house for having cancer. I'll just pause a second and let that sink in.
There is some more to the story of course, though not as much as one might hope to have it make any kind of sense. For the last year and a half or so, Electra has been living in Stourport, in the west Midlands. She was in a three-person house, renting a single room. Since her AML came to light, her parents have been renting one of the other rooms. This was a convenient arrangement, as it allowed her family to stay close to her; at any given point, there would usually be someone (Electra's mother, father or brother, generally) in their room, and I would be in Electra's (as would she when she was out of the hospital).
Then, in early April, Electra's landlord Keith sent her an email saying that he would "have to give notice" on Electra's room. He claimed to be very sorry, but his mortgage terms were changing, and he needed to rent the entire house out (i.e. all three rooms) starting in May in order to make payments. He further asserted that he was having trouble renting the third room (the master bedroom) because of Electra's "condition"; people would hear about the situation, and then back out.
Now, I understand that the house is a business, and Keith needs to protect his investment. That's fair enough. I can also understand why a potential tenant might be a little uneasy about moving into a house with one tenant who's rarely there, whose boyfriend is around half the time (and working from home all day during that time) and whose parents were sporadically there. But, there are a couple problems with this. First, Electra never told Keith she was OK with his divulging of her very personal medical info. Secondly, considered objectively, there were two rooms that were rented and for the majority of the time, two people there; sometimes myself and her mother, sometimes Electra and her father, etc. But both rooms were paid for fully and both were occupied.
In any event, what's strange is that Keith's claim that he'd ben unable to rent the third room out rather falls apart when it's revealed that the other tenant was informed that someone would move into that selfsame room on May 1st. The tenant was informed of this BEFORE Electra was asked to vacate. So it seems it wasn't that hard after all!
Finally, while I understand that such a decision has to be looked at from a business standpoint, asking someone to move out during the brief window between rounds of chemotherapy is-at best-cold or-at worst-downright heartless. Had Keith come to explain the situation and seek a resolution towards it, no harm would've been done. Instead, he simply stated that he'd have to give notice, but was really sorry. I'm not sure why he was so keen to empty the house by the end of April (the other housemate was also asked to vacate, though that had been planned for sometime and it was merely the date that was set as such). It really seems suspicious to me that he was pushing everyone out all at once.
I feel it necessary to point out, as well, that Electra paid her rent every month, promptly. She kept the house clean, didn't smoke (the only housemate who actually adhered to that rule!) and was basically an ideal tenant in every way. So there's no history of problems to justify such a drastic action. I should also point out that it's definitely illegal to kick someone out for having cancer, and certainly to do so without sufficient notice (though no move-out date was dictated, and end-of-the-month timeframe was certainly alluded to). I haven't decided exactly how i'm planning to respond yet, but I have a range of ideas from "ignore it" to "polite but diffident" to "ruinous". I'll update once we decide.
The upshot of this is that Electra has now moved to Birmingham. She's looked at a place fairly close to the city centre and had planned to buy it anyway, for a number of reasons. But now, instead of having a place in Stourport where she could stay until move-in date (her flat is still under construction), she was forced to move in the midst of her treatment. Luckily, her parents were able to rent a flat in the same development as her new place, but asking someone to do this during the most stressful time of their life is just wrong.
So, yeah. We're in Birmingham now. It's better in many ways-a more interesting city, close to the city centre, more accessible to the hospital, easier for me to come visit, easier for her family to fly into, etc. Birmingham is-in basically every way-a better choice. I just wish that it had been a choice, rather than being foisted upon us by someone else without the decency and compassion to allow a basic amount of leeway for extenuating circumstances.
Tuesday, May 03, 2011
Electra & AML: Spring update-medical
(See all posts related to Electra's ongoing treatment)
So, I've committed the archetypal blogging faux-pas: not blogging. It's been well over a month since my last post, despite my plans to post more frequently. Those plans still exist, and I do intend to develop a better rhythm and post more frequently, I've just drifted a little so far. Again.
Part of the reason for this is that Electra has been out of the hospital for most of the last month, so it's been a comparatively quiet time. However, that is a clearly relative term and there has been loads that's gone on, so let me first bring everyone up to speed. This post will mostly be an update, and I'll try to get (back) into a habit of posting more often and thus give some commentary, philosophising, etc. Because there is so much, I'm going to split it into a few different posts. This one is about the medical side of things.
Electra has now been out of the hospital for nearly two months, far-and-away the longest period of time since this whole thing began. On the surface this seems like a good thing, but the underlying reasons are unfortunately somewhat less rosy.
After each cycle of chemo, Electra's bone marrow is tested via biopsy (a very unpleasant procedure for her). This checks to see whether the cancer cells have gone into remission, and check other genetic markers to measure the progress of the treatment. After phase 1 of chemo, these tests came back positive, indicating that the cancer was in remission, which would portend a successful treatment. However, this turned out to be an incomplete picture. While the initial (and quicker) tests showed good progress, there is a subset of tests involving genetic analysis which take longer to come back. When these tests came back (shortly after cycle two) they showed a persistent genetic anomaly on chromosome eight known as trisomy-8.
The genetic abnormality is itself worrying and was identified earlier on in the treatment. The concern is that it might make her less treatable using chemotherapy alone. That it persisted through the first cycle of chemo was proof that this concern had come to pass. The chemo should still eradicate the leukaemia, but the trisomy-8 would still be there, meaning that the cancer would come back in time. Since chemo is traumatic on the body and each time builds up some resistance, it should never be repeated if it's possible to avoid doing so. So that means looking at a more severe course of treatment: full-body radiotherapy and a bone-marrow transplant, coupled with a more-intense dose of chemo (as if the previous rounds weren't bad enough!)
In essence, this is all about the bone-marrow transplant (BMT). The chemo and the radiotherapy are, at least in the case where a BMT is being performed, supporting steps. The bone marrow is the centre of the immune system. Stem cells, T-cells and blood cells are all produced here, and it's for this reason the leukaemia is dangerous: when the body's defence factory is compromised, every other system can fall prey to problems. In a BMT, one's bone marrow is killed off entirely and replaced with a new system. The radiotherapy and chemo destroy every trace of the patient's existing system and stem cell harvested from the donor are injected into the body where they are absorbed by the bone marrow and generate a new system. In some cases, an actual extraction of marrow from the donor may still be necessary, but in many instances, stem cells, filtered from a blood extraction are enough to generate new bone marrow in the recipient. It is this procedure that Electra is now set to go through.
Schedule of Events
The hospital where Electra was being treated (Worcester Royal) does not have the facilities to perform and monitor BMTs, so she has been transferred to Birmingham, who have been monitoring the case since the beginning. She will go into Birmingham Heartlands Hospital on May 6th (Friday). She will then undergo two days of intense chemotherapy and then be transferred to Coventry University Hospital for four days of full-body radiation therapy (in essence, one is put in front of an X-ray which is left on for 30 minutes; this is done twice a day for four days). Then it's back to Birmingham where she will receive the injection of stem cells. The stem cells will have been extracted from her brother (who is an excellent match, thankfully!) over the previous two days, using a special machine which filters blood so that the stem cells are removed and the remaining blood re-inserted into the donor's system.
So, basically, 7th/8th: chemo; 9th-12th: radiation therapy; 13th: BMT.
I'll do a post on the implications of a bone-marrow transplant soon. In short, it's not good. It's necessary, and far preferable to chemo only given her test results, but it will mean a longer and more intensive recovery period, greater restrictions on future activities for a longer period of time, and a raft of risks and side-effects. I don't want to scare anyone who reads this: it is still very much the right choice, and the overall prognosis is pretty good, but the road to recovery is much harder with a BMT than without.
I will post more in the coming days to discuss Electra's living situation (complicated), the implication of a bone-marrow transplant (complicated also) and more. But in the interests of keeping this from becoming a novel, let me just say that the outlook is good but scary. Please keep Electra in your thoughts as much as possible, the next bit may be very scary.
So, I've committed the archetypal blogging faux-pas: not blogging. It's been well over a month since my last post, despite my plans to post more frequently. Those plans still exist, and I do intend to develop a better rhythm and post more frequently, I've just drifted a little so far. Again.
Part of the reason for this is that Electra has been out of the hospital for most of the last month, so it's been a comparatively quiet time. However, that is a clearly relative term and there has been loads that's gone on, so let me first bring everyone up to speed. This post will mostly be an update, and I'll try to get (back) into a habit of posting more often and thus give some commentary, philosophising, etc. Because there is so much, I'm going to split it into a few different posts. This one is about the medical side of things.
Electra has now been out of the hospital for nearly two months, far-and-away the longest period of time since this whole thing began. On the surface this seems like a good thing, but the underlying reasons are unfortunately somewhat less rosy.
After each cycle of chemo, Electra's bone marrow is tested via biopsy (a very unpleasant procedure for her). This checks to see whether the cancer cells have gone into remission, and check other genetic markers to measure the progress of the treatment. After phase 1 of chemo, these tests came back positive, indicating that the cancer was in remission, which would portend a successful treatment. However, this turned out to be an incomplete picture. While the initial (and quicker) tests showed good progress, there is a subset of tests involving genetic analysis which take longer to come back. When these tests came back (shortly after cycle two) they showed a persistent genetic anomaly on chromosome eight known as trisomy-8.
The genetic abnormality is itself worrying and was identified earlier on in the treatment. The concern is that it might make her less treatable using chemotherapy alone. That it persisted through the first cycle of chemo was proof that this concern had come to pass. The chemo should still eradicate the leukaemia, but the trisomy-8 would still be there, meaning that the cancer would come back in time. Since chemo is traumatic on the body and each time builds up some resistance, it should never be repeated if it's possible to avoid doing so. So that means looking at a more severe course of treatment: full-body radiotherapy and a bone-marrow transplant, coupled with a more-intense dose of chemo (as if the previous rounds weren't bad enough!)
In essence, this is all about the bone-marrow transplant (BMT). The chemo and the radiotherapy are, at least in the case where a BMT is being performed, supporting steps. The bone marrow is the centre of the immune system. Stem cells, T-cells and blood cells are all produced here, and it's for this reason the leukaemia is dangerous: when the body's defence factory is compromised, every other system can fall prey to problems. In a BMT, one's bone marrow is killed off entirely and replaced with a new system. The radiotherapy and chemo destroy every trace of the patient's existing system and stem cell harvested from the donor are injected into the body where they are absorbed by the bone marrow and generate a new system. In some cases, an actual extraction of marrow from the donor may still be necessary, but in many instances, stem cells, filtered from a blood extraction are enough to generate new bone marrow in the recipient. It is this procedure that Electra is now set to go through.
Schedule of Events
The hospital where Electra was being treated (Worcester Royal) does not have the facilities to perform and monitor BMTs, so she has been transferred to Birmingham, who have been monitoring the case since the beginning. She will go into Birmingham Heartlands Hospital on May 6th (Friday). She will then undergo two days of intense chemotherapy and then be transferred to Coventry University Hospital for four days of full-body radiation therapy (in essence, one is put in front of an X-ray which is left on for 30 minutes; this is done twice a day for four days). Then it's back to Birmingham where she will receive the injection of stem cells. The stem cells will have been extracted from her brother (who is an excellent match, thankfully!) over the previous two days, using a special machine which filters blood so that the stem cells are removed and the remaining blood re-inserted into the donor's system.
So, basically, 7th/8th: chemo; 9th-12th: radiation therapy; 13th: BMT.
I'll do a post on the implications of a bone-marrow transplant soon. In short, it's not good. It's necessary, and far preferable to chemo only given her test results, but it will mean a longer and more intensive recovery period, greater restrictions on future activities for a longer period of time, and a raft of risks and side-effects. I don't want to scare anyone who reads this: it is still very much the right choice, and the overall prognosis is pretty good, but the road to recovery is much harder with a BMT than without.
I will post more in the coming days to discuss Electra's living situation (complicated), the implication of a bone-marrow transplant (complicated also) and more. But in the interests of keeping this from becoming a novel, let me just say that the outlook is good but scary. Please keep Electra in your thoughts as much as possible, the next bit may be very scary.
Sunday, March 20, 2011
Electra & AML: The Big D
(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.
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.
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