(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.
Showing posts with label leukaemia. Show all posts
Showing posts with label leukaemia. Show all posts
Tuesday, May 03, 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, January 23, 2011
Electra & AML: The road to recovery
So, a little update and some general housekeeping/response to a few bits of criticism.
First, the update, and the update is predominantly good news. In short, today was a day that brought some very welcome positive news. As I described in my first posting on the subject, in each cycle of chemotherapy, one's immune system is decimated along with the the cancerous cell (in this case in Electra's bone marrow). The hope, of course, is that the immune system starts to rebound more quickly than the cancer, and the body heals itself and also wipes out the cancer. Electra will go through four of these cycles.
Well, today marked a milestone in that Electra's platelet count has stabilised. The platelets, which are responsible for blood clotting, fixing bruises and so forth in the body, are one of the three types of blood cells which Electra was low on (the others being white and red blood cells). She's been receiving platelet transfusions during her treatment to keep these levels up-transfusions to which she's had several significant adverse reactions. However, over the past two days, her platelet levels have remained essentially stable (dropping from 47 on Friday, to 45 yesterday and 44 today). This is a clear and unambiguous sign that her body has started to recover, as normally they would've dropped to the mid-20s in this time period. So, her body has clearly begun to manufacture its own platelets, a very important step indicative of a recovering system.
The next key marker is to see her neutrophils recover. Neutrophils are the most abundant type of white blood cell and the body's primary defense mechanism against disease and infection-basically the Royal Marines of the body. It is the lack of these cells that puts her at the most risk of infection while at the hospital, requiring greater isolation, careful attention to diet and related precautions. If these start to rebound in significant numbers (likely to happen within the next week or so), so should be able to get out of the hospital for awhile and do some recovery at home. This will be an obvious boon for her spirits. Of course, it's also the harbinger of the second cycle of chemo; it's important to attack the cancer before it has a chance to regroup, so it's done while the body is at its healthiest and the cancer only starting to rebound. So the double-edged sword is that when you feel at your best, you get hit with round two of chemo. But that's for another week; for now, she has a home visit to look forward to.
On a potentially more pragmatic note, Electra's mother (who'd been visiting for two weeks) and brother (who'd been visiting for the last week or so) both left today, and she was sad to see them go, as were they at having to leave. Sadly, the is is the reality of Electra's situation; her geographic separation from her family makes visits hard and though the time is precious, real life insists they must eventually come to an end. I am here for her now and can hopefully pick up some of that slack, but when you're sick, I'm not sure that anyone or anything can replace your parents and siblings.
So, now onto some constructive criticism I've received about these posts. Electra feels that I've been sugarcoating the news for all of you, trying to soften blows and edit reality. And I suppose that's true to an extent; I don't relish the thought of being the bringer of doom and/or gloom, so perhaps I do try to put a positive spin on things; alternately maybe I'm just a glass-half-full type of guy (I'm not; I personally feel that in that allegory the glass is merely twice as large as is required). So, let me be blunt: things are looking up, but they were very hard for a time. Electra lost most of her appetite, she was nauseous and in pain for much of the day, her hair has started to fall out and she repeatedly spiked a fever. The doctors assured us that everything she experienced was to be expected and that we needn't fret, but it's hard not to. Every single day was a struggle for her for more than a week, specifically the week after chemo ended. Her body had been hit by ten days of intense and horrific treatment and responded by essentially shutting down. Fatigue was constant, dizziness frequent and she ached and felt like she'd been run over by a train.
This was hard for me to hear, and I know it was hard for her mother to witness. I don't know whether to feel relieved to have missed it, or guilty to have done so, but I expect to be here for much of the week after her 2nd cycle of chemo, which we're told will be even worse, so perhaps that will be my penitence for missing the first one. All I know is that while I am confident things will turn out well, and the doctors felt she was reacting as well as can be expected, that the end-of-tunnel light was tough to spot at times. It should be noted in my defense that I wasn't wholly coddling you all; Electra was in fact coddling me and not filling me in on all these details. Further, I don't want to alarm you, so perhaps I was softening a little-this aspect of the treatment is expected, she is very well monitored by very competent people. Were there anything to be alarmed about, we would be informed. But I don't want to seem like I'm sugar-coating: she will emerge victorious, but only after four very intense battles. This is Iwo Jima in 1945: an all-out battle with great cost and sacrifice but one I know we can win.
Monday, January 17, 2011
Electra & AML: To Be Or Not To Be (A Raging Hypochondriac)
(See all posts related to Electra's ongoing treatment)
I have a well-established policy when it comes to health issues: ignore them long enough and they'll generally go away on their own. By and large, this has served me well: I'm almost always fairly healthy and bumps in the road tend to just be that. That's (a small) part of why this experience with Electra has been particularly scary.
We saw symptoms of leukaemia in Electra for months. But the terrifying and frustrating thing is that-as simple as it is to look back now and connect the dots-there was nothing to really cause any alarm. She'd been pretty fatigued and low energy for months. OK, well it's autumn in England, which will depress anyone (I've been lead to believe the sun does in fact still exist, but I'm not buying that story!). And beyond that, her work is intense. That, combined with a fairly repetitive daily routine and a feeling of inertia in terms of living arrangements and such made it easy to explain away as just a case of the "blahs", perhaps with a vitamin or mineral deficiency thrown in for good measure.
She'd had a sore throat, very painful and accompanied by a dry cough, that kept coming back. Well, OK, she works with kids; I'm by no means a germophobe, but the only reason that kids weren't the root cause of the plague was because we had the good sense to keep them locked away from the general public back then. You just kind of expect to get sick if you work with kids, especially in your first year or two. So the handful of other sicknesses she seemed to pick up (congestion, flulike symptoms, nausea etc) were easily chalked up to the same thing, with a run of bad luck assumed as the primary cause. She also bruised easily and once or twice had odd red dots appear on her skin, but the former could simply be a case of "just because" and the latter perhaps some slight allergic reaction.
And that's what's really scary. You can look back and attribute every aspect of what I've just described to the AML. Lowered white blood cell counts result in an immune system susceptible to everything. Low platelets lead to easy bruising and the red dots. And low red blood cell counts sap your energy. In retrospect it's obvious; at the time, of course not. The irony is that we'd wondered why she was seeming to have such a run of bad health luck and even postulated something serious, but never believed it to be the case.
Under these circumstances, it's thus hard to maintain myhyperchondriac mega-chondriac reckless anti-hypochondriac tendencies. I'm not now running to the doctor for every sniffle, but in the back of my mind is a little more fear than once resided there. This is of course compounded by the realities of the modern age: as useful a tool as WebMD's symptom checker can be, self-diagnosis is never a good idea, even if I were a real doctor, much less as a borderline-competent Ph.D. engineer. Pretty much any symptom plugged into a symptom checker can be a symptom of some type of cancer (or AIDS, or Ebola or Kuru or god knows what).
I will, of course, return to a wanton disregard for my own health, but I suspect I may have a lasting worry about others beyond what I've got now. I've always excelled at giving others advice that I myself refuse to follow and "go to the doctor" has always been high up that list anyway. I just hope I can refrain from call an ambulance every time Electra sneezes from now on.
This is compounded by her central line (aka Hickman line), which was put in on Thursday. The backstory is that she initially had a PICC line put in until she could have the Hickman installed, which is only done on Thursdays. Both lines have the same purpose: a permanent in/out catheter to allow for injection of chemotherapy and other IV medications, and taking blood for sampling. In long-term patients this is done to avoid having to stick them with needles five times a day for six months. The PICC line goes into the crook of the elbow, up past the shoulder and stops above the atria of the heart; it is shorter-term than the Hickman, which is inserted into the right breast area and goes directly into the jugular. In any event, on Tuesday, the nurses and doctors became concerned that the PICC line might have gotten infected, so it had to be removed and a temporary line was put into her hand, which hurt like hell. On Thursday, that came out and the Hickman went in. While this will be much better in the long run, it is a minor surgery and has resulted in bruising (which of course takes longer to heal with no platelets). So she's quite sore and tender much of the time, which further decreases sleep.
So physically, things aren't great. Fatigue, discomfort, pain and chills (from the fever) don't make for a happy camper. But I think what's worse is the frustration. At more than two weeks in the hospital now, Electra is starting to feel the profound sense of impotence that comes with an extended illness (I swear, I'm not making a dick joke here, I do mean impotence in the more traditional sense i.e. powerlessness). As a patient, you have no real control over... anything. You eat when they bring you food, you are confined to your room, you lack the energy to do much of anything you'd do in your normal life. You have people who love you that are watching out for you and taking care of the minutae of life-paying car tax, working out details with the landlord, etc. But it's easy to feel helpless and patronised under these circumstances. It's the way it has to be, but that doesn't mean it's appealing. And I think Electra is starting to feel that way much more, which is frustrating.
I want to be clear: it's not a horrible, grey, dire situation. She's responding to the treatment about as well as you could expect and in a week or so should start to get her immune system back, which will help with the sleeping and the energy and all the rest, and should bring some relief. But the past week has been the most challenging so far.
I have a well-established policy when it comes to health issues: ignore them long enough and they'll generally go away on their own. By and large, this has served me well: I'm almost always fairly healthy and bumps in the road tend to just be that. That's (a small) part of why this experience with Electra has been particularly scary.
We saw symptoms of leukaemia in Electra for months. But the terrifying and frustrating thing is that-as simple as it is to look back now and connect the dots-there was nothing to really cause any alarm. She'd been pretty fatigued and low energy for months. OK, well it's autumn in England, which will depress anyone (I've been lead to believe the sun does in fact still exist, but I'm not buying that story!). And beyond that, her work is intense. That, combined with a fairly repetitive daily routine and a feeling of inertia in terms of living arrangements and such made it easy to explain away as just a case of the "blahs", perhaps with a vitamin or mineral deficiency thrown in for good measure.
She'd had a sore throat, very painful and accompanied by a dry cough, that kept coming back. Well, OK, she works with kids; I'm by no means a germophobe, but the only reason that kids weren't the root cause of the plague was because we had the good sense to keep them locked away from the general public back then. You just kind of expect to get sick if you work with kids, especially in your first year or two. So the handful of other sicknesses she seemed to pick up (congestion, flulike symptoms, nausea etc) were easily chalked up to the same thing, with a run of bad luck assumed as the primary cause. She also bruised easily and once or twice had odd red dots appear on her skin, but the former could simply be a case of "just because" and the latter perhaps some slight allergic reaction.
And that's what's really scary. You can look back and attribute every aspect of what I've just described to the AML. Lowered white blood cell counts result in an immune system susceptible to everything. Low platelets lead to easy bruising and the red dots. And low red blood cell counts sap your energy. In retrospect it's obvious; at the time, of course not. The irony is that we'd wondered why she was seeming to have such a run of bad health luck and even postulated something serious, but never believed it to be the case.
Under these circumstances, it's thus hard to maintain my
I will, of course, return to a wanton disregard for my own health, but I suspect I may have a lasting worry about others beyond what I've got now. I've always excelled at giving others advice that I myself refuse to follow and "go to the doctor" has always been high up that list anyway. I just hope I can refrain from call an ambulance every time Electra sneezes from now on.
STATUS UPDATE:
So, just to provide a long-overdue and much-needed update: the last week has been really really difficult for Electra. Where she was doing well with a few rough spots, she is now almost constantly tired and uncomfortable. She continues to spike fevers from time to time (rarely about 38.5C or so, but still a cause for concern), so she's on 4 or 5 antibiotics as well as an anti-fungal for good measure. These have to be administered at specific times which means she's often up until 12:30AM and then awoken once more at 6:00AM for the next round. So a good night's sleep is as yet elusive.This is compounded by her central line (aka Hickman line), which was put in on Thursday. The backstory is that she initially had a PICC line put in until she could have the Hickman installed, which is only done on Thursdays. Both lines have the same purpose: a permanent in/out catheter to allow for injection of chemotherapy and other IV medications, and taking blood for sampling. In long-term patients this is done to avoid having to stick them with needles five times a day for six months. The PICC line goes into the crook of the elbow, up past the shoulder and stops above the atria of the heart; it is shorter-term than the Hickman, which is inserted into the right breast area and goes directly into the jugular. In any event, on Tuesday, the nurses and doctors became concerned that the PICC line might have gotten infected, so it had to be removed and a temporary line was put into her hand, which hurt like hell. On Thursday, that came out and the Hickman went in. While this will be much better in the long run, it is a minor surgery and has resulted in bruising (which of course takes longer to heal with no platelets). So she's quite sore and tender much of the time, which further decreases sleep.
So physically, things aren't great. Fatigue, discomfort, pain and chills (from the fever) don't make for a happy camper. But I think what's worse is the frustration. At more than two weeks in the hospital now, Electra is starting to feel the profound sense of impotence that comes with an extended illness (I swear, I'm not making a dick joke here, I do mean impotence in the more traditional sense i.e. powerlessness). As a patient, you have no real control over... anything. You eat when they bring you food, you are confined to your room, you lack the energy to do much of anything you'd do in your normal life. You have people who love you that are watching out for you and taking care of the minutae of life-paying car tax, working out details with the landlord, etc. But it's easy to feel helpless and patronised under these circumstances. It's the way it has to be, but that doesn't mean it's appealing. And I think Electra is starting to feel that way much more, which is frustrating.
I want to be clear: it's not a horrible, grey, dire situation. She's responding to the treatment about as well as you could expect and in a week or so should start to get her immune system back, which will help with the sleeping and the energy and all the rest, and should bring some relief. But the past week has been the most challenging so far.
Thursday, January 06, 2011
Electra & AML: Diagnosis and the start of treatment
(See all posts related to Electra's ongoing treatment)
So, since most people likely to be reading this know me in the real world, most of you probably know my girlfriend Electra as well. We've been together for about two and a quarter years thus far and though we've had our fair share of bumps and issues, things are good. However, the end of last year saw a significant piece of bad news come our way. On December 31, 2010, Electra was diagnosed with Acute Myeloid Leukaemia (AML), a rare and aggressive-though generally treatable-form of bone marrow cancer. She is currently undergoing chemotherapy treatment at an oncology and haematology ward near where she lives.
This posting is the first in what will undoubtedly become a series of posts as treatment progress. I'm doing this for a few reasons. One is to document the process as it happens. I have faith that we will emerge happy and healthy at the other end of treatment (I'll explain why in a minute), and I'd like to have a record of the ups and downs as this obviously represents a significant and life-changing event for her, and to a lesser extent myself. Secondly, I'd like to be able to keep everyone who loves and cares for Electra informed of her status and progress. I will be in touch with many of you over emails, phone calls, facebook and the like, but this is an easy way to broadcast to everyone who wants to stay informed, without inundating everyone with countless emails and calls. Finally, I feel there are things I need to get down. call it self-indulgence, catharsis or venting, I just feel I have things I need to get off my chest.
This entry will be a little haphazard, but I'll try to keep things organised as best as possible. You'll have to excuse me if I ramble a bit, my thoughts are somewhat discombobulated at the moment.
Timeline: diagnosis and treatment
Once the process of diagnosis started, things moved quickly. Very quickly. But in reality, this has probably been building for quite some time. Electra has, for several months, felt a general sense of ill-health. Sometimes, this was a non-specific sentiment of "I just feel off", but there were some specifics. She had a throat infection which was wiped out by antibiotics, but kept coming back. She'd have long periods of low energy and lethargy. She bruised easily and they took quite some time to heal. Symptoms like this are frustrating, because the picture is so clear in hindsight, but impossible to pin down at the time. We just assumed she was having a run of bad luck and catching every bud that went around; the fact that she worked with children (a demographic not know for its strict adherence to WHO/CDC biohazard regulations) merely served to reinforce the idea that she was merely unfortunate enough to catch every little germ that floated by. We figured she'd get past each infection and slowly build up an immunity to working with kids (something I might point out never has to be done when one works with computers!)
But it all came to a head this December. We'd travelled to Vietnam and Malaysia at the end of November, returning early in December. Right before the trip, Electra had come down with a sore throat, which her doctor believed to be tonsillitis. It had lingered but eventually she seemed to get past it on her own. But while in Vietnam, it came back with a vengeance. We were able to take advantage of a glaring public policy oversight in Vietnam which allows for the purchase of antibiotics without a prescription. While a terrible idea from a public health standpoint, it was convenient for us, and the antibiotics wiped out the tonsillitis again. However, on returning to the UK, the sore throat came back a third time. This time her doc took some blood to check for Mono (aka Glandular Fever). And that's when it started to get real.
The initial scan showed some odd results and a diminished blood cell count. Enough so to warrant another test; this latter test was performed on Dec. 24th-blood taken in the morning and tests done by the afternoon. This speed worried us as such expedited service can often indicate a high level of concern. Unfortunately, Electra had left her phone in the car, not understanding that mobile phones are actually mobile and should be all but surgically implanted into oneself at all times. Her GP told her there were some anomalous results and to schedule an appointment for Wednesday the 29th, the first day the practice would be open after Christmas. We went in first thing on the 29th and were informed that there were some strange results including "blast cells", malformed blood cells that can indicate leukaemia, though they can also be indicative of many other less-scary conditions. But this was our first indication that something serious might be amiss.
The GP referred us to a haematologist (blood specialist) for the morning of the 30th. He told us that for someone of Electra's age, leukaemia was the most likely concern, and scheduled a bone marrow biopsy for that afternoon. A strange and unpleasant procedure, this was completed as scheduled and we went home to worry. Results were to be ready by the next morning (New Years Eve). At 10AM on the 31st, our fears were confirmed. Electra was diagnosed with Acute Myeloid Leukaemia (AML), an aggressive form of bone marrow cancer. She was to start treatment that night, an equally aggressive schedule of chemotherapy.
Say what you will about the NHS. But in two days we went from an unusual blood test to a diagnosis and commencement of treatment. When there's something big, the system works. But it doesn't give one much time to contemplate.
What is AML?
Acute Myeloid Leukaemia is one of four major types of leukaemia (which can be any combination of acute or chronic and myeloid or lymphoblastic). It is relatively rare, especially in people under the age of 60 or so, but isn't entirely unheard-of. It is fast-acting and without treatment "universally fatal" (in the words of the consulting haematologist/oncologist).
Instead of the creation of normal blood cells (red and white blood cells and platelets), bone marrow in an AML patient produces malformed cells called blast cells. These are harmful to the body because they can reside in the bone marrow and inhibit cell production, as well as circulating through the body. Mostly though, the damage comes because normal cells are not produced in sufficient quantities.
The positive side is that AML is-from what I understand-fairly treatable. My father, a GP in Canada described leukaemia as one of the "big wins" in the cancer research community. 10-15 years ago success stories were few, but now, with the right chemotherapy, barring any complications, remission is often achieved and
What is chemotherapy? What specific therapy is Electra undergoing?
Chemotherapy is basically like poisoning yourself to save your life. It looks harmless, just like any other bag of clear fluid, but in essence, chemotherapy is some of the most advanced poisons we've ever devised. I should be clear that what I'm going to describe is based on my understanding from the haematologist; I am by no means an expert in the field.
In essence, chemotherapy destroys the cancer cells throughout the body but with major collateral damage: it also wipes out the body's immune system. Neither is 100% wiped out by the treatment, there are always some residual cells. The hope is that the immune system bounces back faster, and can go to work on the remaining cancerous cells.
With each successive course of chemotherapy, more cancer cells are destroyed, but there will always be some remaining cancer in the body. The goal of the therapy is to decimate the cancer population enough that the body can naturally eliminate all the remaining malformed cells through its natural processes. In fact, we all have malformed cells in our body; but for those of us without cancer, there are few enough that our body's defences eliminate them.
To use an analogy, a normally-functioning body is like a society: there are a few bad seeds, but a well-trained police force can ferret them out and keep their influence from spreading too far. On the other hand, in a cancer sufferer, it's more like Detroit, or Moss Side (in Manchester): the malcontents have taken over and the only remaining solution is to nuke the entire area from space and hope that the good seeds repopulate more quickly and establish order.
Electra's treatment involves four cycles of high-dose chemotherapy. Each is 10 days long, and involves three standard drugs and one highly-targeted experimental drug as part of a clinical trial. After the administration of the chemotherapy she has a 4-6 week recovery period. The start of this period (and the latter half or so of the chemotherapy application) is the dangerous time. This is what's known as the nutrapenic phase, during which her immune system will be largely suppressed. She is therefore susceptible to all sorts of nasties including bacteria, viruses and fungi. Therefore, antibiotics, antivirals and antifungals agents (plus antihistamines and god knows what else) will be applied as needed, her vitals monitored very closely and her food and surroundings carefully controlled. As her immune system starts to rebuild, some of these precautions may be relaxed, and she may even be allowed to leave the hospital for a few days (fingers crossed!).
How's she doing?
Overall, pretty well. Chemotherapy is obviously very taxing on the body and we are as yet in early days, so things can change. Electra is a stronger than she's normally able to admit to herself and I know she'll fight this, but it's not going to be an easy struggle. At the moment, she's very tired, not only from the medication, but also from adjusting to life in a hospital-it's hard to get a good night's sleep with an IV in your arm and a whirring machine 30 centimetres from your head. Not to mention the pokes, prods and checks from the nurses. But she's adjusting.
Otherwise, there are some time when things seem more dire. She'll get cold, nauseous, dizzy or all of the above. These times are scary, but the nurses and doctors are well-prepared for this and their confidence is reassuring. The arsenal of medications at their disposal have so far been successful in getting her back to feeling alright and I think they will continue to do so.
The biggest challenge is to overcome her natural sense of "I don't want to cause any trouble". This means that I have to browbeat her into reporting everything to the nurses-every bout of nausea, chill and shiver, every pain or dizzy spell. It means that she has to be open with visitors when she gets tired. Although visiting is great and cheers her immensely, it can also be quite tiring and there may well be a point where she needs to rest but is too polite to say so. Fortunately, her adaptability shines through here and she's become good and doing both of these things. It's hard to get someone so giving to think of themselves, but she's learning.
How am I doing?
Also pretty well. My work has been excellent; I've spoken with my line manager about this and he's been amazingly supported, something for which I'm very indebted to him. I'm currently working remotely from Electra's house and visiting her in the evenings; when her mother comes next week I'll return to the office and devise a strategy for this. I know that I have to balance my caring for Electra and supporting her with my work and my life. Six months is a long time and I cannot spend every single day there. Fortunately, with her parents, her friends and her colleagues, she will be well tended.
I characterise my outlook as cautiously optimistic. I'm not naïve enough to think that we're out of the woods (hell, we're just on the inbound edge at this point). Infection is a real risk and complications do arise. But Electra is young, healthy (you know, aside from the whole cancer thing) and has a good support system. We also seem to have caught this early. So with all that being as it is and the progress being made on the research front, I am very confident she will beat this and I will help her in any way I can.
What I need to do, though, is the same thing I've asked of her: to take some care of myself. So far, I'm not sleeping a lot. And it's really starting to catch up with me. I cannot give her the care she deserves under those circumstances, so I need to stay on the right track (and maybe not write blog posts until 1:30AM for that matter). I also put myself at risk of infection which would mean I couldn't see her at all, which helps nobody.
But again, I'm optimistic. I'm ultimately a creature of pattern and adaptation and I simply need to find the right balance. Also get back into the gym and get rid of this Christmas spare tire, but that's neither here nor there.
What's the plan?
So what do we expect going forward? What's the plan, what's the hope, what's the fear? Well, as I say, I am confident that we can beat this, but make no mistake: it will be a slog. This is our Stalingrad: a slow battle of attrition, won by inches and at great cost. It will be hard for Electra and hard for her friends, family and other loved ones. But we will break the back of this cancer and come out all the better for it.
This blog will be a good forum for tracking progress; I intend to update it as often as I can as more information arises. Use the keyword "Electra+AML" to locate all related posts, or subscribe to the RSS feed. These posts should also be imported automatically into facebook.
But I will also be trying to live a somewhat normal life much of the time: back at work in Guildford and at play in London. I may be leaning on some or all of you for my own support and will also likely try to organise some visits and support for Electra. In the meantime, if you wish to send something, please email/call/text/facebook message me and I'll give you the appropriate address. Cards, balloons, chocolates, etc. are all good; flowers are not due to infection risks. There is of course no obligation whatsoever. She has phone signal in her room and will shortly have internet access we think, so love and thoughts are always appreciated. But please remember the fatigue: calls are more draining than texts, for example. Visits are welcome, but there will be good and bad times depending on her energy, fatigue and immunosuppression levels. Please feel free to contact me at any time and I'll advise.
Thanks to everyone who's read this far; this is a long crappy road but the destination is worth it and I know you will all help us get there.
So, since most people likely to be reading this know me in the real world, most of you probably know my girlfriend Electra as well. We've been together for about two and a quarter years thus far and though we've had our fair share of bumps and issues, things are good. However, the end of last year saw a significant piece of bad news come our way. On December 31, 2010, Electra was diagnosed with Acute Myeloid Leukaemia (AML), a rare and aggressive-though generally treatable-form of bone marrow cancer. She is currently undergoing chemotherapy treatment at an oncology and haematology ward near where she lives.
This posting is the first in what will undoubtedly become a series of posts as treatment progress. I'm doing this for a few reasons. One is to document the process as it happens. I have faith that we will emerge happy and healthy at the other end of treatment (I'll explain why in a minute), and I'd like to have a record of the ups and downs as this obviously represents a significant and life-changing event for her, and to a lesser extent myself. Secondly, I'd like to be able to keep everyone who loves and cares for Electra informed of her status and progress. I will be in touch with many of you over emails, phone calls, facebook and the like, but this is an easy way to broadcast to everyone who wants to stay informed, without inundating everyone with countless emails and calls. Finally, I feel there are things I need to get down. call it self-indulgence, catharsis or venting, I just feel I have things I need to get off my chest.
This entry will be a little haphazard, but I'll try to keep things organised as best as possible. You'll have to excuse me if I ramble a bit, my thoughts are somewhat discombobulated at the moment.
Timeline: diagnosis and treatment
Once the process of diagnosis started, things moved quickly. Very quickly. But in reality, this has probably been building for quite some time. Electra has, for several months, felt a general sense of ill-health. Sometimes, this was a non-specific sentiment of "I just feel off", but there were some specifics. She had a throat infection which was wiped out by antibiotics, but kept coming back. She'd have long periods of low energy and lethargy. She bruised easily and they took quite some time to heal. Symptoms like this are frustrating, because the picture is so clear in hindsight, but impossible to pin down at the time. We just assumed she was having a run of bad luck and catching every bud that went around; the fact that she worked with children (a demographic not know for its strict adherence to WHO/CDC biohazard regulations) merely served to reinforce the idea that she was merely unfortunate enough to catch every little germ that floated by. We figured she'd get past each infection and slowly build up an immunity to working with kids (something I might point out never has to be done when one works with computers!)
But it all came to a head this December. We'd travelled to Vietnam and Malaysia at the end of November, returning early in December. Right before the trip, Electra had come down with a sore throat, which her doctor believed to be tonsillitis. It had lingered but eventually she seemed to get past it on her own. But while in Vietnam, it came back with a vengeance. We were able to take advantage of a glaring public policy oversight in Vietnam which allows for the purchase of antibiotics without a prescription. While a terrible idea from a public health standpoint, it was convenient for us, and the antibiotics wiped out the tonsillitis again. However, on returning to the UK, the sore throat came back a third time. This time her doc took some blood to check for Mono (aka Glandular Fever). And that's when it started to get real.
The initial scan showed some odd results and a diminished blood cell count. Enough so to warrant another test; this latter test was performed on Dec. 24th-blood taken in the morning and tests done by the afternoon. This speed worried us as such expedited service can often indicate a high level of concern. Unfortunately, Electra had left her phone in the car, not understanding that mobile phones are actually mobile and should be all but surgically implanted into oneself at all times. Her GP told her there were some anomalous results and to schedule an appointment for Wednesday the 29th, the first day the practice would be open after Christmas. We went in first thing on the 29th and were informed that there were some strange results including "blast cells", malformed blood cells that can indicate leukaemia, though they can also be indicative of many other less-scary conditions. But this was our first indication that something serious might be amiss.
The GP referred us to a haematologist (blood specialist) for the morning of the 30th. He told us that for someone of Electra's age, leukaemia was the most likely concern, and scheduled a bone marrow biopsy for that afternoon. A strange and unpleasant procedure, this was completed as scheduled and we went home to worry. Results were to be ready by the next morning (New Years Eve). At 10AM on the 31st, our fears were confirmed. Electra was diagnosed with Acute Myeloid Leukaemia (AML), an aggressive form of bone marrow cancer. She was to start treatment that night, an equally aggressive schedule of chemotherapy.
Say what you will about the NHS. But in two days we went from an unusual blood test to a diagnosis and commencement of treatment. When there's something big, the system works. But it doesn't give one much time to contemplate.
What is AML?
Acute Myeloid Leukaemia is one of four major types of leukaemia (which can be any combination of acute or chronic and myeloid or lymphoblastic). It is relatively rare, especially in people under the age of 60 or so, but isn't entirely unheard-of. It is fast-acting and without treatment "universally fatal" (in the words of the consulting haematologist/oncologist).
Instead of the creation of normal blood cells (red and white blood cells and platelets), bone marrow in an AML patient produces malformed cells called blast cells. These are harmful to the body because they can reside in the bone marrow and inhibit cell production, as well as circulating through the body. Mostly though, the damage comes because normal cells are not produced in sufficient quantities.
The positive side is that AML is-from what I understand-fairly treatable. My father, a GP in Canada described leukaemia as one of the "big wins" in the cancer research community. 10-15 years ago success stories were few, but now, with the right chemotherapy, barring any complications, remission is often achieved and
What is chemotherapy? What specific therapy is Electra undergoing?
Chemotherapy is basically like poisoning yourself to save your life. It looks harmless, just like any other bag of clear fluid, but in essence, chemotherapy is some of the most advanced poisons we've ever devised. I should be clear that what I'm going to describe is based on my understanding from the haematologist; I am by no means an expert in the field.
In essence, chemotherapy destroys the cancer cells throughout the body but with major collateral damage: it also wipes out the body's immune system. Neither is 100% wiped out by the treatment, there are always some residual cells. The hope is that the immune system bounces back faster, and can go to work on the remaining cancerous cells.
With each successive course of chemotherapy, more cancer cells are destroyed, but there will always be some remaining cancer in the body. The goal of the therapy is to decimate the cancer population enough that the body can naturally eliminate all the remaining malformed cells through its natural processes. In fact, we all have malformed cells in our body; but for those of us without cancer, there are few enough that our body's defences eliminate them.
To use an analogy, a normally-functioning body is like a society: there are a few bad seeds, but a well-trained police force can ferret them out and keep their influence from spreading too far. On the other hand, in a cancer sufferer, it's more like Detroit, or Moss Side (in Manchester): the malcontents have taken over and the only remaining solution is to nuke the entire area from space and hope that the good seeds repopulate more quickly and establish order.
Electra's treatment involves four cycles of high-dose chemotherapy. Each is 10 days long, and involves three standard drugs and one highly-targeted experimental drug as part of a clinical trial. After the administration of the chemotherapy she has a 4-6 week recovery period. The start of this period (and the latter half or so of the chemotherapy application) is the dangerous time. This is what's known as the nutrapenic phase, during which her immune system will be largely suppressed. She is therefore susceptible to all sorts of nasties including bacteria, viruses and fungi. Therefore, antibiotics, antivirals and antifungals agents (plus antihistamines and god knows what else) will be applied as needed, her vitals monitored very closely and her food and surroundings carefully controlled. As her immune system starts to rebuild, some of these precautions may be relaxed, and she may even be allowed to leave the hospital for a few days (fingers crossed!).
How's she doing?
Overall, pretty well. Chemotherapy is obviously very taxing on the body and we are as yet in early days, so things can change. Electra is a stronger than she's normally able to admit to herself and I know she'll fight this, but it's not going to be an easy struggle. At the moment, she's very tired, not only from the medication, but also from adjusting to life in a hospital-it's hard to get a good night's sleep with an IV in your arm and a whirring machine 30 centimetres from your head. Not to mention the pokes, prods and checks from the nurses. But she's adjusting.
Otherwise, there are some time when things seem more dire. She'll get cold, nauseous, dizzy or all of the above. These times are scary, but the nurses and doctors are well-prepared for this and their confidence is reassuring. The arsenal of medications at their disposal have so far been successful in getting her back to feeling alright and I think they will continue to do so.
The biggest challenge is to overcome her natural sense of "I don't want to cause any trouble". This means that I have to browbeat her into reporting everything to the nurses-every bout of nausea, chill and shiver, every pain or dizzy spell. It means that she has to be open with visitors when she gets tired. Although visiting is great and cheers her immensely, it can also be quite tiring and there may well be a point where she needs to rest but is too polite to say so. Fortunately, her adaptability shines through here and she's become good and doing both of these things. It's hard to get someone so giving to think of themselves, but she's learning.
How am I doing?
Also pretty well. My work has been excellent; I've spoken with my line manager about this and he's been amazingly supported, something for which I'm very indebted to him. I'm currently working remotely from Electra's house and visiting her in the evenings; when her mother comes next week I'll return to the office and devise a strategy for this. I know that I have to balance my caring for Electra and supporting her with my work and my life. Six months is a long time and I cannot spend every single day there. Fortunately, with her parents, her friends and her colleagues, she will be well tended.
I characterise my outlook as cautiously optimistic. I'm not naïve enough to think that we're out of the woods (hell, we're just on the inbound edge at this point). Infection is a real risk and complications do arise. But Electra is young, healthy (you know, aside from the whole cancer thing) and has a good support system. We also seem to have caught this early. So with all that being as it is and the progress being made on the research front, I am very confident she will beat this and I will help her in any way I can.
What I need to do, though, is the same thing I've asked of her: to take some care of myself. So far, I'm not sleeping a lot. And it's really starting to catch up with me. I cannot give her the care she deserves under those circumstances, so I need to stay on the right track (and maybe not write blog posts until 1:30AM for that matter). I also put myself at risk of infection which would mean I couldn't see her at all, which helps nobody.
But again, I'm optimistic. I'm ultimately a creature of pattern and adaptation and I simply need to find the right balance. Also get back into the gym and get rid of this Christmas spare tire, but that's neither here nor there.
What's the plan?
So what do we expect going forward? What's the plan, what's the hope, what's the fear? Well, as I say, I am confident that we can beat this, but make no mistake: it will be a slog. This is our Stalingrad: a slow battle of attrition, won by inches and at great cost. It will be hard for Electra and hard for her friends, family and other loved ones. But we will break the back of this cancer and come out all the better for it.
This blog will be a good forum for tracking progress; I intend to update it as often as I can as more information arises. Use the keyword "Electra+AML" to locate all related posts, or subscribe to the RSS feed. These posts should also be imported automatically into facebook.
But I will also be trying to live a somewhat normal life much of the time: back at work in Guildford and at play in London. I may be leaning on some or all of you for my own support and will also likely try to organise some visits and support for Electra. In the meantime, if you wish to send something, please email/call/text/facebook message me and I'll give you the appropriate address. Cards, balloons, chocolates, etc. are all good; flowers are not due to infection risks. There is of course no obligation whatsoever. She has phone signal in her room and will shortly have internet access we think, so love and thoughts are always appreciated. But please remember the fatigue: calls are more draining than texts, for example. Visits are welcome, but there will be good and bad times depending on her energy, fatigue and immunosuppression levels. Please feel free to contact me at any time and I'll advise.
Thanks to everyone who's read this far; this is a long crappy road but the destination is worth it and I know you will all help us get there.
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