(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.
Wednesday, May 25, 2011
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.
Monday, March 07, 2011
Electra & AML: The Other Shoe
(See all posts related to Electra's ongoing treatment)
This past week has not been easy. Throughout the course of Electra's treatment, there have been many hard times; when she's felt so sick she can't move, so tired she can barely speak or has been in such pain that she can do neither. But throughout all of this, we've had the positive outlook provided by the knowledge that all the key signs were pointing in the right direction. Electra had gone into remission after the first cycle, she was reacting well to the chemo and recovering quickly and generally her system was behaving the way one would hope. This made the tough times easier to deal with: you expect there to be some setbacks along the way (infections, fatigue, pain). But we were comforted to know that the key metrics, those that give the best indication of how she will react to the treatment, all showed positive. This past week, that all changed. I should note here that I haven't done much research into this yet, so it's quite possible I'll misunderstand some of this and so much of what I say here might be inaccurate, but I'll do my best from what I do understand.
Last Wednesday, Electra got test results back from her last bone marrow biopsy, which were taken after she completed her first round of chemo, several weeks ago. These results take longer to process because they involve genetic analysis. And the results showed the presence of a chromosome abnormality called Trisomy 8, meaning an extra set of genes on chromosome 8. This was detected initially, but the expectation was that the chemotherapy would eradicate this abnormality. It has failed to do so.
The upshot of this is that the chemo is likely to wipe out Electra's cancer, but it will return; maybe in a few months, maybe in a few years, but it will come back. Since chemo is by no means a silver bullet, and in fact should be avoided as much as possible, one cannot simply sit back and wait for a recurrence and hit it again with chemo (and why would you want to given the effects of the treatment?) So they are going to need to go with a more extreme type of treatment. Specifically, it looks like Electra will now almost certainly need a bone marrow transplant and possibly full-body radiotherapy.
The good news is that her brother Phillip is an excellent match for bone marrow donation (and apparently he doesn't even have to get a giant needle in the back to do it, they can now extract stem cells from his blood and grow the marrow, which is quite frankly awesome). And further, this treatment should have a positive outcome in the end, as the success rate is very high.
The downside is that the treatment is even harder to deal with than chemo alone. I don't want to overstate it, so I will write another post once I've done my research, but from what I know so far, it means that the recovery time is much longer, being measured in years not months. It means strict limits on interactions with children (obviously very limiting for Electra's career as a paediatric speech and language therapist), and strict limits on travel, especially foreign travel. It means she will be unable to make it to the wedding in June for which I'm best man, it means our travel plans to Rome, Munich and more are gone; it changes quite a lot. It also means that she will have to leave the Royal Worcester Hospital behind as they are simply not equipped to treat someone with this particular aberration. She will likely be moved to Birmingham, though we need to meet with a specialist to discuss where she would receive the best care and environment, and where she would be the happiest. But it makes everything much more complicated with visiting, and housing and all the rest.
On top of all that, Electra's neutrapenic phase has hit her like a ton of bricks. Apparently, my assessment of it as not-quite-as-bad-as-last-time was premature. It's now gotten much, much worse. She's picked up an infection again, so is running periodic fevers. She's tired a lot. But more than anything else, she's in pain. Almost constantly now. It seems she has picked up a potential fistula or fissure and will likely require surgery to correct it. That, however, has to wait until her immune system is back and her infection cleared. So in the meantime, she must endure agony and an increased risk of infection from that very fistula. It's a delicate balancing act between the risks of the surgery and the risks of infection that the surgery would help reduce. The end result is days or weeks of pain.
Electra has dealt with this well overall, though it's been the first real blow to her confidence and stoicism. Having to shift from "hard to deal with but ultimately good progress" to "actually much worse than we'd thought" has been tough. I admire her ability to stick with it, even if it takes some prodding from yours truly to get her there. But this whole discovery has been truly off-putting and has really hit her quite hard. Physically, it's been difficult and the painkillers (now at a much high dose) only just barely take the edge of some of the time. But emotionally, I think it has taken some of the wind from her sails. That being said, Electra will always regroup and come back even stronger and more determined, and I know that she will tackle this head-on and with tenacity.
As for myself, I don't know how well I'm handling it. I know it'll be OK in the end, but it's hit me pretty hard as well. I guess I hadn't realised exactly how much emphasis I'd put on the so-far positive results we'd seen from the tests. I'm still getting through the day, but have found myself angrier, run-down and less focused than before. I've had a few drinks, perhaps more than I should've, though I've pushed myself now to hold back on that, for fear that I could self-medicate too much. And of course, I stress eat, as I always do. Between that and my lack of gym motivation, the trousers and shirts are starting to feel a wee bit more snug than before. But I guess that's my normal arc: depression, followed by anger and frustration, followed by nose-to-the-grindstone and determination. And I think I'm moving into that phase now, so I will get back on that horse. But I'm not exactly cheered up by it all.
All is of course not lost. As I said, the long-term outcome of this treatment is good, and all our travel plans and the rest are not cancelled; merely delayed. But I would say that this has probably been the worst, most demoralising week we've had thus far.
This past week has not been easy. Throughout the course of Electra's treatment, there have been many hard times; when she's felt so sick she can't move, so tired she can barely speak or has been in such pain that she can do neither. But throughout all of this, we've had the positive outlook provided by the knowledge that all the key signs were pointing in the right direction. Electra had gone into remission after the first cycle, she was reacting well to the chemo and recovering quickly and generally her system was behaving the way one would hope. This made the tough times easier to deal with: you expect there to be some setbacks along the way (infections, fatigue, pain). But we were comforted to know that the key metrics, those that give the best indication of how she will react to the treatment, all showed positive. This past week, that all changed. I should note here that I haven't done much research into this yet, so it's quite possible I'll misunderstand some of this and so much of what I say here might be inaccurate, but I'll do my best from what I do understand.
Last Wednesday, Electra got test results back from her last bone marrow biopsy, which were taken after she completed her first round of chemo, several weeks ago. These results take longer to process because they involve genetic analysis. And the results showed the presence of a chromosome abnormality called Trisomy 8, meaning an extra set of genes on chromosome 8. This was detected initially, but the expectation was that the chemotherapy would eradicate this abnormality. It has failed to do so.
The upshot of this is that the chemo is likely to wipe out Electra's cancer, but it will return; maybe in a few months, maybe in a few years, but it will come back. Since chemo is by no means a silver bullet, and in fact should be avoided as much as possible, one cannot simply sit back and wait for a recurrence and hit it again with chemo (and why would you want to given the effects of the treatment?) So they are going to need to go with a more extreme type of treatment. Specifically, it looks like Electra will now almost certainly need a bone marrow transplant and possibly full-body radiotherapy.
The good news is that her brother Phillip is an excellent match for bone marrow donation (and apparently he doesn't even have to get a giant needle in the back to do it, they can now extract stem cells from his blood and grow the marrow, which is quite frankly awesome). And further, this treatment should have a positive outcome in the end, as the success rate is very high.
The downside is that the treatment is even harder to deal with than chemo alone. I don't want to overstate it, so I will write another post once I've done my research, but from what I know so far, it means that the recovery time is much longer, being measured in years not months. It means strict limits on interactions with children (obviously very limiting for Electra's career as a paediatric speech and language therapist), and strict limits on travel, especially foreign travel. It means she will be unable to make it to the wedding in June for which I'm best man, it means our travel plans to Rome, Munich and more are gone; it changes quite a lot. It also means that she will have to leave the Royal Worcester Hospital behind as they are simply not equipped to treat someone with this particular aberration. She will likely be moved to Birmingham, though we need to meet with a specialist to discuss where she would receive the best care and environment, and where she would be the happiest. But it makes everything much more complicated with visiting, and housing and all the rest.
On top of all that, Electra's neutrapenic phase has hit her like a ton of bricks. Apparently, my assessment of it as not-quite-as-bad-as-last-time was premature. It's now gotten much, much worse. She's picked up an infection again, so is running periodic fevers. She's tired a lot. But more than anything else, she's in pain. Almost constantly now. It seems she has picked up a potential fistula or fissure and will likely require surgery to correct it. That, however, has to wait until her immune system is back and her infection cleared. So in the meantime, she must endure agony and an increased risk of infection from that very fistula. It's a delicate balancing act between the risks of the surgery and the risks of infection that the surgery would help reduce. The end result is days or weeks of pain.
Electra has dealt with this well overall, though it's been the first real blow to her confidence and stoicism. Having to shift from "hard to deal with but ultimately good progress" to "actually much worse than we'd thought" has been tough. I admire her ability to stick with it, even if it takes some prodding from yours truly to get her there. But this whole discovery has been truly off-putting and has really hit her quite hard. Physically, it's been difficult and the painkillers (now at a much high dose) only just barely take the edge of some of the time. But emotionally, I think it has taken some of the wind from her sails. That being said, Electra will always regroup and come back even stronger and more determined, and I know that she will tackle this head-on and with tenacity.
As for myself, I don't know how well I'm handling it. I know it'll be OK in the end, but it's hit me pretty hard as well. I guess I hadn't realised exactly how much emphasis I'd put on the so-far positive results we'd seen from the tests. I'm still getting through the day, but have found myself angrier, run-down and less focused than before. I've had a few drinks, perhaps more than I should've, though I've pushed myself now to hold back on that, for fear that I could self-medicate too much. And of course, I stress eat, as I always do. Between that and my lack of gym motivation, the trousers and shirts are starting to feel a wee bit more snug than before. But I guess that's my normal arc: depression, followed by anger and frustration, followed by nose-to-the-grindstone and determination. And I think I'm moving into that phase now, so I will get back on that horse. But I'm not exactly cheered up by it all.
All is of course not lost. As I said, the long-term outcome of this treatment is good, and all our travel plans and the rest are not cancelled; merely delayed. But I would say that this has probably been the worst, most demoralising week we've had thus far.
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