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.
Monday, January 10, 2011
Electra & AML: End of Chemo Cycle 1
(See all posts related to Electra's ongoing treatment)
So today marks a fairly key milestone in this chapter of our lives: Electra's last day of chemotherapy in her first cycle. As I mentioned in the first post, she will be going through four cycles in total; each one is ten days of chemo followed by 4-6 weeks of recovery, depending on how her body reacts.
So, how's it been since I last posted? Well, frankly, not quite so great. Although the chills that she felt previously which worried me so much seem to have passed, she's been getting more and more tired. Some of this is due to disrupted schedules (on Friday, her second round of chemo didn't finish until 3AM and with a 6AM wakeup call for blood pressure checks, fatigue is inevitable). But much of it is due to the chemo itself. As I said before, chemotherapy is poison deliberately injected into your veins. Do that for ten days, and the energy levels will tend to drop. So Saturday was really the lowest point: she slept much of the day, and had no energy to speak of while awake.
This is where being a carer is a bit strange. Because the best thing I can do is... be there. It can be tough to feel that sitting in a chair playing Civilization IV for 6 hours is helping someone beat cancer (though if that's all it took, I could be a real doctor!). But that's what she needs. Someone to help her know she's not fighting alone, that's she's loved and watched over, but who will let her get the rest she needs.
One of the hardest impulses to overcome when caring for someone with a disease like this is the impulse to constantly be "doing" something. There's a profound sense of powerlessness that accompanies cancer, especially for those on the sidelines watching a loved one go through it. There's a feeling that should be more active, able to help in a more tangible, profound way. But you can't; the chemotherapy does all the heavy lifting (or radiation treatment, bone marrow or organ donations, etc. depending on the cancer). And in many cases, you can make things worse by trying to meddle or micromanage. Pushing too hard adds stress and fatigue, fiddling with minutae can wear the patient out, and trying to push someone beyond their limits can set someone back, medically. So as hard as it can be to accept (especially for someone like myself, who is a "fixer" by nature), the reality is that sometimes the best thing you can do is provide love and care quietly while the patient sleeps and heals.
A corollary to this is the need to take care of myself. Because of the desire to be doing something at all times and to try and fix things, it's easy to disappear into the world of the carer, to give up your life for it. And that's dangerous because this is not a three-week sprint; it's a six-month marathon. As much as I'd feel better about how much I was helping if I were to be in there every day, that simply isn't tenable for half a year. So to that end, I'm currently back in London for a week or two, sorting out work and having a bit of a life. I don't know what our eventual schedule will be in terms of hospital vs. home, Worcester vs. London. But I know it can't be 100% hospital, as guilty as that sometimes makes me feel (I know it shouldn't but it does at times). Electra's mother is visiting for two weeks and her brother will be here for the second of those; he father is planning to come shortly after that. So she's got carers still, and I will be up at some point during that time; until then I need to try and enjoy myself a little so I can recharge and better help out when I do go back. I just need to learn to fight the urge to be constantly fixing.
So today marks a fairly key milestone in this chapter of our lives: Electra's last day of chemotherapy in her first cycle. As I mentioned in the first post, she will be going through four cycles in total; each one is ten days of chemo followed by 4-6 weeks of recovery, depending on how her body reacts.
So, how's it been since I last posted? Well, frankly, not quite so great. Although the chills that she felt previously which worried me so much seem to have passed, she's been getting more and more tired. Some of this is due to disrupted schedules (on Friday, her second round of chemo didn't finish until 3AM and with a 6AM wakeup call for blood pressure checks, fatigue is inevitable). But much of it is due to the chemo itself. As I said before, chemotherapy is poison deliberately injected into your veins. Do that for ten days, and the energy levels will tend to drop. So Saturday was really the lowest point: she slept much of the day, and had no energy to speak of while awake.
This is where being a carer is a bit strange. Because the best thing I can do is... be there. It can be tough to feel that sitting in a chair playing Civilization IV for 6 hours is helping someone beat cancer (though if that's all it took, I could be a real doctor!). But that's what she needs. Someone to help her know she's not fighting alone, that's she's loved and watched over, but who will let her get the rest she needs.
One of the hardest impulses to overcome when caring for someone with a disease like this is the impulse to constantly be "doing" something. There's a profound sense of powerlessness that accompanies cancer, especially for those on the sidelines watching a loved one go through it. There's a feeling that should be more active, able to help in a more tangible, profound way. But you can't; the chemotherapy does all the heavy lifting (or radiation treatment, bone marrow or organ donations, etc. depending on the cancer). And in many cases, you can make things worse by trying to meddle or micromanage. Pushing too hard adds stress and fatigue, fiddling with minutae can wear the patient out, and trying to push someone beyond their limits can set someone back, medically. So as hard as it can be to accept (especially for someone like myself, who is a "fixer" by nature), the reality is that sometimes the best thing you can do is provide love and care quietly while the patient sleeps and heals.
A corollary to this is the need to take care of myself. Because of the desire to be doing something at all times and to try and fix things, it's easy to disappear into the world of the carer, to give up your life for it. And that's dangerous because this is not a three-week sprint; it's a six-month marathon. As much as I'd feel better about how much I was helping if I were to be in there every day, that simply isn't tenable for half a year. So to that end, I'm currently back in London for a week or two, sorting out work and having a bit of a life. I don't know what our eventual schedule will be in terms of hospital vs. home, Worcester vs. London. But I know it can't be 100% hospital, as guilty as that sometimes makes me feel (I know it shouldn't but it does at times). Electra's mother is visiting for two weeks and her brother will be here for the second of those; he father is planning to come shortly after that. So she's got carers still, and I will be up at some point during that time; until then I need to try and enjoy myself a little so I can recharge and better help out when I do go back. I just need to learn to fight the urge to be constantly fixing.
Thursday, January 06, 2011
Electra & AML: The fear factor
(See all posts related to Electra's ongoing treatment)
So, one of the biggest things with cancer of any kind is the fear. And I've been thinking about this a lot since we got the diagnosis. Am I scared? Should I be scared? What about Electra? Should she be? And in the end, I don't know. As weird as it sounds, I can't tell if I'm scared or not.
On the one hand, I'm a numbers guy, bound by logic and science. And the numbers, so far as I can gather, are promising. Electra has a lot in her favour: she's young and generally healthy. She's got good support (including yours truly) and the hospital seems really on top of their game. Her parents have sought some outside advice from a friend-of-a-cousin who happens to be a bone marrow specialist at the Mayo clinic who says the treatment she's on is good and generally pretty effective. So overall, I am confident that she'll get through this.
But there are times when it can be hard to see. Electra seems to react quite poorly to one of the chemotherapy drugs, called atopside. This is administered once per day for the first five days of her treatment, and every time she's gotten it (she's just completed day six now), she gets dizzy and nauseous, sometimes even weak and cold (like yesterday). When this happens, it can be scary. Because it's one thing to know that the numbers are on your side, it's quite another to see the one you love shaking from the cold in a very warm room as the walls spin around her.
It's like any other semi-irrational fear. For example, there are a great many people living in Canada or the UK who are afraid of snakes. Now, there are no poisonous snakes in either country, but that fear is imprinted on our brains and it can take hold, logic be damned. But the thing to do is accept that your body feels the fear but you control your reactions. I saw a World War Two show on TV once where a soldier who'd fought in D-Day said that courage isn't not being afraid, it's being afraid but doing what you have to do anyway.
So am I scared? Maybe a little. But the doctors aren't and that gives me hope. The trends back up my confidence-AML is beatable and she has a lot working for her. So when the bad times hit and she seems frail and weakened… well, that's just when it's time to steel my nerves and remember the reality: things are OK. There will be good days and bad, high energy and low. This is part of the process and she will get through it. We will get through it. Scared or not, we will push once more into that breech dear friends.
So, one of the biggest things with cancer of any kind is the fear. And I've been thinking about this a lot since we got the diagnosis. Am I scared? Should I be scared? What about Electra? Should she be? And in the end, I don't know. As weird as it sounds, I can't tell if I'm scared or not.
On the one hand, I'm a numbers guy, bound by logic and science. And the numbers, so far as I can gather, are promising. Electra has a lot in her favour: she's young and generally healthy. She's got good support (including yours truly) and the hospital seems really on top of their game. Her parents have sought some outside advice from a friend-of-a-cousin who happens to be a bone marrow specialist at the Mayo clinic who says the treatment she's on is good and generally pretty effective. So overall, I am confident that she'll get through this.
But there are times when it can be hard to see. Electra seems to react quite poorly to one of the chemotherapy drugs, called atopside. This is administered once per day for the first five days of her treatment, and every time she's gotten it (she's just completed day six now), she gets dizzy and nauseous, sometimes even weak and cold (like yesterday). When this happens, it can be scary. Because it's one thing to know that the numbers are on your side, it's quite another to see the one you love shaking from the cold in a very warm room as the walls spin around her.
It's like any other semi-irrational fear. For example, there are a great many people living in Canada or the UK who are afraid of snakes. Now, there are no poisonous snakes in either country, but that fear is imprinted on our brains and it can take hold, logic be damned. But the thing to do is accept that your body feels the fear but you control your reactions. I saw a World War Two show on TV once where a soldier who'd fought in D-Day said that courage isn't not being afraid, it's being afraid but doing what you have to do anyway.
So am I scared? Maybe a little. But the doctors aren't and that gives me hope. The trends back up my confidence-AML is beatable and she has a lot working for her. So when the bad times hit and she seems frail and weakened… well, that's just when it's time to steel my nerves and remember the reality: things are OK. There will be good days and bad, high energy and low. This is part of the process and she will get through it. We will get through it. Scared or not, we will push once more into that breech dear friends.
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.
Saturday, January 01, 2011
Electra & AML: Index
This is an index of all the posts related to Electra's AML treatment. Each post has to be manually linked in, so I can't guarantee I won't miss one at some point, but I'll do my best to put them all here in chronological order:
- Diagnosis and the Start of Treatment (05/01/2011)
- The Fear Factor (06/01/2011)
- End of Chemo Cycle 1 (10/01/2011)
- To Be or Not To Be (A Raging Hypochondriac) (17/10/2011)
- The Road To Recovery (23/01/2011)
- The Eye Of The Storm (03/02/2011)
- Once More Into Breach Dear Friends (13/02/2011)
- Healthy Person's Guilt (27/02/2011)
- The Other Shoe (07/03/2011)
- The Big D (20/03/2011)
- Spring update; Medical (03/05/2011)
- Spring update: Residence (13/05/2011)
- My Work (25/05/2011)
- Absence (13/06/2011)
- Once More Into That Breach, My Friends (15/12/2011)
- The Reality of What's To Come (16/12/2011)
- Christmas Update (24/12/2011)
- Our New Eve Years Tradition (01/01/2012)
- Last Chemo Ever, For Better or Worse (05/01/2012)
- The Hard Truth (16/01/2012)
- A Bad Week (28/01/2012)
- The Result We Dreaded (02/02/2012)
- The Ups And Downs (19/02/2012)
- The Shells of Dreams (26/02/2012)
- The End Approaches (08/03/2012)
- The Decline (14/03/2012)
- The Asymptote (15/02/2012)
- Farewell My Sweetness (16/03/2012)
- Memorial and Eulogy (05/04/2012)
- My Phantom (16/04/2012)
- The Return To Normalcy (10/05/2012)
- One Year On (16/03/2013)
Also, for specific topics, see the following keywords:
- Electra + AML (all posts about the treatment are tagged with this one)
- Electra
- AML
- Cancer
- Leukaemia
- Chemotherapy
- Bone Marrow
- Radiotherapy
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