Electra & AML: Christmas update

(See all posts related to Electra's ongoing treatment)

A minor, but very vital part of Electra's recent re-diagnosis was the question of New Years Eve. Specifically, the timing of the recommencement of the treatment. As her relapse only occurred (or at least was identified) in the middle of December, the doctor informed us that she would need to start treatment either early in the new year, or in-between Christmas and New Year. We dearly hoped for the first option, an early January start. This, however, would depend on her blood levels; if her white cell count stayed high, she could start in the new year. Were it to drop, she would have to check into the hospital shortly after Christmas and begin treatment. At the risk of giving away spoilers, we were thrilled to be told that we should be able to make it to New Years Eve (pending a final check this coming Wednesday to ensure all was OK).

To some, this may seem strange. Indeed, when describing it to one of my closest friends, he quite reasonably asked why we wouldn't start immediately, regardless of the results of the blood work. You see, the efficacy of the treatment is increased when it is administered earlier. As chemotherapy is targeted to attack cancerous cells (with the healthy ones taking a hit as collateral damage), the greater the concentration of "bad" cells, the greater the force standing in opposition to the treatment, and the less effective it is liable to be. As is the case with most cancers, early detection and treatment can often have a profound effect. So why not start the minute the diagnosis is reached?

The reason is life. Not surviving, not just getting through, but life. We want as much life as we can possibly ring out of whatever time is left. Although we are obviously trying to maximise the quantity of available time, more importantly perhaps is trying to maximise the quality. When things are at their very darkest and it becomes increasingly harder to see in front of you, even the dimmest, most flickering light becomes a beacon, something to strive for and dream of. A flame in the dark is the very essence of guidance and hope. So each victory, each bit of enjoyment, each "win"… they matter. More than they ever have before.

The terrifying, horrible reality is that there is now a very real chance we may not get to spend next Christmas and New Years together. Though we were together last New Years Eve, Electra was diagnosed at 2:00 PM and connected to chemotherapy at 7:00. We did not truly have a New Years Eve. So, dammit, we will do so this year.

Fighting cancer is a siege, not a lightning war. The process is long, draining, and demoralising and is won not through pitched battles and intense triumphs, but through inches. When full victories are won, they come on the back of a hard-fought slog, digging through the deepest trenches of human physiology to stand upon the pinnacle of health and well-being, glorious victories celebrated all the more for the exhaustive battle of wills required to achieve them.

And in a years-long battle of inches, every win matters. We celebrate when the blood counts go up, we celebrate when the need for antibiotics goes down. A bit more energy or a bit less of a cough. A reduced temperature or an increased stamina. Every victory counts. And every victory, no matter how small, is treasured. And that treasure keeps you going.

New Years Eve is often overblown in importance. Ultimately, it marks the passing of a single day as much as it does a full year. But our traditions and customs define-to a very large extent-our priorities and our core values. And New Years Eve is therefore more portentous than other days. It is a chance to reflect on the past year and prepare for the next, to right the wrongs and further improve the rights. So we celebrate. We celebrate with friends; we celebrate with family; we celebrate with loved ones, and with love itself. So New Years Eve matters.

December 31st, 2011 will very hopefully see Electra and I celebrating the coming of 2012 with a group of close friends in a small cottage in the south of England. We will drink, we will eat, we will sing and talk and hug and love and be merry. The new year will bring tougher battles and more brutal fights, but those are for another day. For one night, for one glorious, celebratory, joyous evening, we will be as we were before cancer and before chemotherapy: hopeful, uncomplicated and revelling in all that this wonderful, flawed, beautiful world has to offer. That matters, because that is living. And we will live.

Electra & AML: The Reality of What's To Come

(See all posts related to Electra's ongoing treatment)

Today was the meeting. The meeting I alluded to in my last post, where we'd meet with the consulting haematologist for an idea of what our options were and what the prognosis and next steps were to be. It was a meeting we approached with some trepidation, as our last meeting had left us rather bereft of optimism or straws at which to grasp. Electra's parents have flown over to attend this meeting with us, support which is both direly needed and greatly appreciated. It also gave us a chance to try and assemble as comprehensive a list of questions as we could come up with, a task we did Thursday night.

The meeting and discussion went as well as could be expected. Unfortunately in this instance, that implies that the results were dire, though not wholly hopeless. I will go into greater detail as desired in future posts, but in essence, there are four treatment options presented:

1. Do nothing
2. Palliative care
3. Azacitidine with DLI (donor leukocyte infusion)
4. FLAG treatment with DLI.

The latter two options are two very different courses of chemotherapy, and the only options really worth considering. Do nothing, the full-surrender approach would give a life expectancy measured in weeks; that time period would be largely defined by discomfort and possibly outright agony. Palliative care wouldn't be much better; though the suffering would be eased through routine blood transfusions and pain killers, the prognosis would be clear: a short period of unpleasantness followed by an untimely end.

So, that leaves the two types of chemotherapy. Azacitidine is a much more mild form of chemo than Electra has experienced thus far. It requires daily chemo injections for seven days followed by three weeks of rest, all of which can be done on an out-patient basis (i.e. she wouldn't have to stay in the hospital except for the first cycle as a precaution). This pattern is repeated six times over half a year. It is, however, the "stall" to which I alluded yesterday. There is no chance that it would cure the cancer; all we would hope for would be extending her life and in the best case, temporary remission. If luck were with us (a condition that has not historically been the case), the leukaemia would be in remission long enough for more drastic treatment-another bone marrow transplant or a more intense form of chemo. In either event, though the chemo itself would be mild (no hair loss, minimal nausea and pain, etc), successful results of any kind are far from guaranteed.

The fourth option is the so-called "FLAG" course of chemotherapy (I will leave the details of the medications involved to the reader). This form of chemo lies in-between the azacitidine and a bone marrow transplant in terms of intensity. It will potentially cause hair loss, nausea, weakness, and all the other nastiness that went with Electra's earlier rounds of chemo. It's a one-week course followed by three weeks of recovery (all as an in-patient, i.e. requiring a full-time stay in the hospital). Only a single cycle is prescribed. On completion-and return to home-Electra would be routinely monitored, but should ideally be able to recover in decent time and hopefully achieve remission. Again, this would then involve a reassessment to determine the future course of action. This treatment carries with it a slim (5-10%) change of a "cure", the possibility that the cancer might not return.

None of these options are good ones. Do-nothing and palliative care are outright death sentences. As initially described to us, AML is "universally fatal" without treatment. The two courses of chemo improve the odds, but are far from certain: either course could fail to push the leukaemia into remission and each introduces risks of opportunistic infections or overtaxing her system. But there's that chance that they might buy some time, or–in the case of FLAG + DLI–maybe even cure her condition.

Electra had made her decision by the time the conversation with the doctor was concluded. It was to be the FLAG treatment. She cannot face daily injections for a week, repeated six times over the course of a half-year. And the azacitidine is guaranteed to never cure her condition. FLAG is the only bet for a cure, and will hopefully give her a leg up on the disease long enough to seek a more comprehensive cure if it does not achieve that miracle itself. Depending on her blood levels next Friday, this treatment may have to begin between Christmas and New Years, or may be able to wait until the very start of 2012. We are dearly hoping for the latter; having missed last New Year's Eve, it would be truly rewarding to enjoy this year's.

Those are the facts. And that's where my comfort ends. I can understand facts. I can evaluate and compare and rationalise facts. What I cannot do, what I am struggling with now and simply cannot truly wrap my mind around, is the emotional implications. None of these choices are good ones and the doctor was kind enough to not engender false hope. So I know that the risks are everywhere and the chance of success far from a sure thing. I get that. But I can't get used to that. I have spoken previously about the very real possibility that this might be fatal. But that possibility is more real than it's ever been, and I don't know how to face that.

Throughout this whole process, and especially over the last few months of remission, it's been easy to internalise the idea of mortality because it's felt like an abstract idea. It's like accepting that I might die riding my bike through London (or riding in a car or flying on a plane). The possibility is always there (and having recently been hit a second time on my bike is often a clear and present threat). But it's not at the forefront of my consciousness, nor is it an omnipresent worry. It's just a distant possibility that with diligence and prudence can be minimised. That is no longer the case; near-future mortality is now a plausible and even likely outcome, and I don't know how to handle it. Maybe I never will and never can.

Right now, I'm more confused and more messed up than I can remember being. I'm neither autistic nor sociopathic, but I don't always deal with emotion well, or clearly. I know I'm angry, I know I'm sad and I know I'm confused and upset at the unfairness of the world. Beyond that, I just feel adrift and isolated, confused and powerless. Our relationship has never been 100% perfect (whose is?) but it's been the defining feature of the last three years of my life and the most important relationship I've ever had. I've had many ideas of what I wanted for the future; whatever comes over the next year was not amongst those ideas. And that is scary, sad and terrifying, all at the same time.

Electra & AML: Once more into the breach, my friends

(See all posts related to Electra's ongoing treatment)


It's been a hugely long time since I last posted, and for that I am sorry. I'm not sure if anyone is still checking this or will ever see this post, but if so please accept my apologies for being so lax over the last six months or so. You see, we'd rather settled into a bit of a lull. A good lull, it must be said.

Recovery from something like AML is not unlike a baseball game, a sport much maligned as boring, plodding and devoid of any real activity. But as a former baseball fan, I can tell you that's not entirely true. Instead, it is a sport which features long stretches of relative inactivity punctuated by intense bursts of motion, excitement and play.

Along these lines, Electra's recovery (and I assume the recovery of others going through similar circumstances) can be seen as brief periods of dramatic and intensive attention spread out across longer periods of rest, recovery and recuperation. For every week-long period of chemo, radiation or transplant, there was as much as a month of bed-rest, slow progress towards vitality and recovery and the daily routine of sleep, medication and healing. The past six months have been particularly illustrative of this pattern: after the most intense treatment thus far-chemo, followed by radiation treatment, followed by the bone marrow transplant-Electra has been trying to rest up, eat right, avoid infection and just let her body do its thing to try and get back to normal operation.

That's not to say there haven't been major events. In September, Electra moved into her new flat, the first she's ever owned. At the start of November, she returned to work; twelve hours per week, with the goal of slowly increasing that number until a full-time schedule was achieved early in 2012. She's seen her appetite and energy start to return, and has grappled with the all-too-common issue of trying to acclimatise to a normal existence in a world that ultimately is unchanged for all her personal journey. I will touch on some of these points (the flat, the work and the return to normalcy) in posts soon, because this entry has a specific purpose: to discuss the latest change.

You see, when a lull such as this occurs, it's easy to start relaxing. Things are still perilous, of course, and energy levels are not what they were before the cancer. But at this stage, the progress is gradual, predictable; almost mundane. Blood tests are routine, but with decreasing frequency. Fatigue is ever-present, but expected. The focus becomes "what now?" as it pertains to one's life. Overall the sense of battle and peril and fear begins to wane. Which makes it all the worse when things take a turn back towards the perilous and terrifying. And just such a turn is the latest development.

Two weeks ago (on a Friday), Electra's routine bloodwork showed an unusually low neutraphil (white cell) count. Her red cells and platelets were fine, but the neurtraphils were low. The doctors weren't terribly worried, as this could be the result of a viral infection, or just a blip on the radar of an otherwise exemplary recovery. So she was scheduled for a follow-up blood test a week later. When this test showed a neutraphil count that had dropped even further, the worry went up and a bone marrow biopsy was scheduled for the following Monday, three days later, the results of which came back a week after that and which we discussed with the doctors this past Tuesday.

The results weren't good. The cancer was back.

This is really the worst thing we could have discovered. It means that the treatment, which is generally a slam-dunk cure, has failed. It means she is once more at risk. And worst of all, the options are very limited. It's too soon to even contemplate another bone marrow transplant, given how recently she had her last one. Depending on the parameters of the transplant, it would either kill her outright or simply not work. There is a different type of chemo we can try, but it will not cure her; all it would ever be is a stall; a hope (and not even a good one) that we might be able to keep the cancer at bay for another six months and then maybe, if conditions are just right, try a more aggressive chemo, or another transplant. Success is far from guaranteed. The other option the doctor presented: palliative care (medical speak for "make you comfortable for your last few months").

Right now, our world is a mess. We will be meeting with the doctor tomorrow (Friday) after he's had a chance to discuss and evaluate the case with all the other doctors on the ward. At this time, they should have more details and might have other options. We are keeping our fingers crossed, and Electra's parents have come over again to be with us for that meeting.

I'm not sure I've ever felt less at ease with any discussion, event or evaluation. I wish I could find a way to be reassuring here. There is a chance that the team will have come up with something new, there is a chance that the chemo treatment will give her good odds. I'm doing my best to look at the positive and to keep hope burning. But like a damp chill, the spectre of what may be to come lingers over everything else and haunts my thoughts. As an engineer, I've been taught to plan for the worst, even if I hope for and expect the best. But I don't know if I have it in me to plan for this worst case. I don't know if anyone can. I only know I'm scared, I'm worried and there are some things I can never truly be ready for.

I honestly thought we were clear. That we were safe, at least for now, out of the woods and on the path to happiness and recovery. As we approach this breach once more, my friends, I cannot help but feel unprepared, unarmed and overwhelmed.

Electra & AML: Absence

(See all posts related to Electra's ongoing treatment)

I am writing this post from my friend's apartment in Toronto. You see, for some time, I've had a trip to Canada planned. This is specifically for my friend Howard's wedding (for which I'm best man) but more generally, I've orchestrated a vacation and series of visits around that one event. As a result, I've been back in Canada for nearly a week now, with another week and a half to go.

This is my first time being truly away from Electra since her diagnosis. I've been in London much of the time, of course, but not truly away to the degree I am now. Though we're in frequent contact by Skype, it is the longest we will have gone without in-person time (from the last time I was in Birmingham to the earliest time I'll be even able to get back will be roughly a month) and also by far the greatest distance between us. This is simultaneously very difficult and somewhat relieving.

It is difficult, because I know that a Skype call isn't the same as a visit or even a phone call, and it's difficult not to feel like I'm failing to provide adequate support during her recovery. One of my philosophies in life has been that you can't do everything, but you should that which you can. In this instance, I cannot do anything medically, but the support and comfort I can give allows me to contribute, and so I do what I can and provide that where possible. At the moment, I cannot do that. I still call daily, and try to call right before her bedtime, but the latter isn't always possible, and I cannot guarantee the former will be at all times. So it can feel like I'm unable to provide the one type of assistance I've been able to give thus far. It's also difficult to hear about progress, both good and bad, and not be acutely aware of the fact that I'm not there to witness it.

However, I do feel that it's providing me some much-needed respite for myself. Over the past few weeks I've started to see myself getting more and more tired, more and more stressed. This too makes me a poor carer, and is why everyone (including Electra) is careful to remind me to take care of myself. So getting away from the situation and responsibilities, if only for awhile (and while still being in contact) allows me to recharge my batteries a little bit. I've greatly enjoyed catching up with friends here, sleeping and eating and just generally being able to relax and reflect a little bit. With cancer, there is a tendency for it to dominate your thoughts to such an extent that it's difficult to avoid it weighing heavily on your mind. So to be able to have some time away is important to one's sanity and a welcome change.

But I think, despite these potentially conflicting emotions, that I can maximise this opportunity. I'm here for a total of two and a half weeks. In the grad scheme of things, not that long. But enough to reinvigorate myself rather dramatically and get some much-needed R&R. I am still in touch daily as I've said, so I don't feel negligent or too far removed. And I know that in the end, this will give me the strength to return twice as strong to the UK, and that I will be much better equipped to provide the necessary support if I let myself relax a little and truly enjoy my time here. And that's what I've been doing so far.

Status Update: Electra is currently out of hospital, and recuperating at home in the rental flat in Birmingham. She was released from the hospital far earlier than expected, and has been able to arrange a less-frequent visit schedule, due to her rapid recovery. She'd been expected to have to go to the hospital thrice weekly for six weeks, but that wasn't much  more than a week and a half, and she's now down to weekly visits. This is due to the doctor's confidence in her recovery. So all signs are pointing up.

However, the process itself is still quite unpleasant. This time around, the biggest problem has been a general sense of discomfort and being ill-at-ease. Electra cannot seem to find any position, sitting or laying, in which she is comfortable. As you can imagine, this makes sleeping difficult. She's also started to get hit by the acute boredom of one trapped at home for extended periods of time. However, her fatigue and trouble focusing (which we call "chemo brain") has made it such that any activity that would alleviate such boredom, including TV, reading or even listing to the radio, is taxing. So it's a bit of a paradox: bored by the lack of anything to do, but unable to do anything to alleviate the boredom.

Also, within the last few days, we've seen the first signs of what is potentially Graft Versus Host Disease, or GVHD. Acute GVHD is the big worry at this stage, as it is the body turning against the new bone marrow, with catastrophic results. However, the doctors have said that a small degree of GVHD is actually good, as it essentially kicks the new immune system into gear. She's had it looked at and the docs were confident enough that she wasn't required to stay in hospital. So while it's unfortunate that's she's experienced this (in the form of a rash on her arm), it appears that it's not too alarming, so I'm confident in her progress.

At this point, though the process is unpleasant and the days difficult, all the key metrics seem to point towards as speedy a recovery as possible, given the treatment she's undergone. Fingers crossed!

Electra & AML: My Work

(See all posts related to Electra's ongoing treatment)

There's been one aspect of this whole affair which has really made things a lot easier, and it's something to which I feel I should give proper credit: my work. I'm not sure what company policy is in discussing the company by name in a public forum, so I'll leave it out for now; suffice to say that if you know me in person, you either know for whom I work or can ask me.

Overall, my job is pretty good. The people I work with are great and the environment is very welcoming. Although it's not what I would do with my free time were I a billionaire, as jobs go it's pretty decent, albeit underpaying. However, in response to this particular crisis, my workplace, and my line manager in particular, have really gone beyond what one could reasonably expect.

I called my line manager on January 1st, the day after Electra was diagnosed, and he was kind enough to answer; had I been in his place I probably would've ignored a work call on New Years Day, so he's already earning some brownie points. In my discussion with him, I explained the situation and prognosis, and my hope to be able to spend more time than usual with Electra while she underwent treatment, especially during the gaps between her parents' visits. His response, in so many words was "Don't worry about it. Focus on getting her well and let us know how we can support you and we will do so".

And this has been the case in practice. I spent the first week working remotely from Worcester, and met with my manager when I got back to Guildford (the city in which my office is located). I sat down with him to discuss a plan and he was again very supportive, indicating that I could take time off with shorter notice than normal, work remotely when necessary, etc.

The plan I've come up with is to spend roughly every other week in Birmingham (previously in Worcester), and to work remotely from Electra's flat. I'm fortunate in that much of the job that I do can be accomplished remotely, and others in my organisation work remotely with varying degrees of regularity, so the action isn't unprecedented. I've brought up a monitor and keyboard, bought a desk and chair, and have thus setup a little office in Electra's place. I work during the day (connected to the company's VPN), and visit Electra at night. During the other weeks, I work from the office in Guildford.

Being able to do this has truly been a boon to my sanity and Electra's comfort. Dealing with this situation is never fun, but would be so much worse, were I required to see her only on weekends and evenings; the latter is especially inconvenient and was untenable while she was in Worcester. I've observed this with one of my closest friends, whose boyfriend at the time had to undergo cancer treatment. She was told by her firm that she was to be at her desk during standard business hours and could visit only on her off time. Needless to say, this made things much more difficult.

During an ongoing treatment like this one, it is often the little victories that matter, and carry the most weight. This particular victory isn't really little, but obviously pales in comparison to any pending wins on the health front. But because my employer has been so understanding and so flexible, it has permitted me to spend more time with Electra when she needs it most, and that's a win for both of us, and I respect and commend them for that. They have earned quite a bit of loyalty from me for their actions.

Electra & AML: Spring update-residence

(See all posts related to Electra's ongoing treatment)

As Kevin Smith would say, I'm not going to bury the lead here: Electra was kicked out of her house for having cancer. I'll just pause a second and let that sink in.

There is some more to the story of course, though not as much as one might hope to have it make any kind of sense. For the last year and a half or so, Electra has been living in Stourport, in the west Midlands. She was in a three-person house, renting a single room. Since her AML came to light, her parents have been renting one of the other rooms. This was a convenient arrangement, as it allowed her family to stay close to her; at any given point, there would usually be someone (Electra's mother, father or brother, generally) in their room, and I would be in Electra's (as would she when she was out of the hospital).

Then, in early April, Electra's landlord Keith sent her an email saying that he would "have to give notice" on Electra's room. He claimed to be very sorry, but his mortgage terms were changing, and he needed to rent the entire house out (i.e. all three rooms) starting in May in order to make payments. He further asserted that he was having trouble renting the third room (the master bedroom) because of Electra's "condition"; people would hear about the situation, and then back out.

Now, I understand that the house is a business, and Keith needs to protect his investment. That's fair enough. I can also understand why a potential tenant might be a little uneasy about moving into a house with one tenant who's rarely there, whose boyfriend is around half the time (and working from home all day during that time) and whose parents were sporadically there. But, there are a couple problems with this. First, Electra never told Keith she was OK with his divulging of her very personal medical info. Secondly, considered objectively, there were two rooms that were rented and for the majority of the time, two people there; sometimes myself and her mother, sometimes Electra and her father, etc. But both rooms were paid for fully and both were occupied.

In any event, what's strange is that Keith's claim that he'd ben unable to rent the third room out rather falls apart when it's revealed that the other tenant was informed that someone would move into that selfsame room on May 1st. The tenant was informed of this BEFORE Electra was asked to vacate. So it seems it wasn't that hard after all!

Finally, while I understand that such a decision has to be looked at from a business standpoint, asking someone to move out during the brief window between rounds of chemotherapy is-at best-cold or-at worst-downright heartless. Had Keith come to explain the situation and seek a resolution towards it, no harm would've been done. Instead, he simply stated that he'd have to give notice, but was really sorry. I'm not sure why he was so keen to empty the house by the end of April (the other housemate was also asked to vacate, though that had been planned for sometime and it was merely the date that was set as such). It really seems suspicious to me that he was pushing everyone out all at once.

I feel it necessary to point out, as well, that Electra paid her rent every month, promptly. She kept the house clean, didn't smoke (the only housemate who actually adhered to that rule!) and was basically an ideal tenant in every way. So there's no history of problems to justify such a drastic action. I should also point out that it's definitely illegal to kick someone out for having cancer, and certainly to do so without sufficient notice (though no move-out date was dictated, and end-of-the-month timeframe was certainly alluded to). I haven't decided exactly how i'm planning to respond yet, but I have a range of ideas from "ignore it" to "polite but diffident" to "ruinous". I'll update once we decide.

The upshot of this is that Electra has now moved to Birmingham. She's looked at a place fairly close to the city centre and had planned to buy it anyway, for a number of reasons. But now, instead of having a place in Stourport where she could stay until move-in date (her flat is still under construction), she was forced to move in the midst of her treatment. Luckily, her parents were able to rent a flat in the same development as her new place, but asking someone to do this during the most stressful time of their life is just wrong.

So, yeah. We're in Birmingham now. It's better in many ways-a more interesting city, close to the city centre, more accessible to the hospital, easier for me to come visit, easier for her family to fly into, etc. Birmingham is-in basically every way-a better choice. I just wish that it had been a choice, rather than being foisted upon us by someone else without the decency and compassion to allow a basic amount of leeway for extenuating circumstances.

Electra & AML: Spring update-medical

(See all posts related to Electra's ongoing treatment)


So, I've committed the archetypal blogging faux-pas: not blogging. It's been well over a month since my last post, despite my plans to post more frequently. Those plans still exist, and I do intend to develop a better rhythm and post more frequently, I've just drifted a little so far. Again.

Part of the reason for this is that Electra has been out of the hospital for most of the last month, so it's been a comparatively quiet time. However, that is a clearly relative term and there has been loads that's gone on, so let me first bring everyone up to speed. This post will mostly be an update, and I'll try to get (back) into a habit of posting more often and thus give some commentary, philosophising, etc. Because there is so much, I'm going to split it into a few different posts. This one is about the medical side of things.

Electra has now been out of the hospital for nearly two months, far-and-away the longest period of time since this whole thing began. On the surface this seems like a good thing, but the underlying reasons are unfortunately somewhat less rosy.

After each cycle of chemo, Electra's bone marrow is tested via biopsy (a very unpleasant procedure for her). This checks to see whether the cancer cells have gone into remission, and check other genetic markers to measure the progress of the treatment. After phase 1 of chemo, these tests came back positive, indicating that the cancer was in remission, which would portend a successful treatment. However, this turned out to be an incomplete picture. While the initial (and quicker) tests showed good progress, there is a subset of tests involving genetic analysis which take longer to come back. When these tests came back (shortly after cycle two) they showed a persistent genetic anomaly on chromosome eight known as trisomy-8.

The genetic abnormality is itself worrying and was identified earlier on in the treatment. The concern is that it might make her less treatable using chemotherapy alone. That it persisted through the first cycle of chemo was proof that this concern had come to pass. The chemo should still eradicate the leukaemia, but the trisomy-8 would still be there, meaning that the cancer would come back in time. Since chemo is traumatic on the body and each time builds up some resistance, it should never be repeated if it's possible to avoid doing so. So that means looking at a more severe course of treatment: full-body radiotherapy and a bone-marrow transplant, coupled with a more-intense dose of chemo (as if the previous rounds weren't bad enough!)

In essence, this is all about the bone-marrow transplant (BMT). The chemo and the radiotherapy are, at least in the case where a BMT is being performed, supporting steps. The bone marrow is the centre of the immune system. Stem cells, T-cells and blood cells are all produced here, and it's for this reason the leukaemia is dangerous: when the body's defence factory is compromised, every other system can fall prey to problems. In a BMT, one's bone marrow is killed off entirely and replaced with a new system. The radiotherapy and chemo destroy every trace of the patient's existing system and stem cell harvested from the donor are injected into the body where they are absorbed by the bone marrow and generate a new system. In some cases, an actual extraction of marrow from the donor may still be necessary, but in many instances, stem cells, filtered from a blood extraction are enough to generate new bone marrow in the recipient. It is this procedure that Electra is now set to go through.

Schedule of Events
The hospital where Electra was being treated (Worcester Royal) does not have the facilities to perform and monitor BMTs, so she has been transferred to Birmingham, who have been monitoring the case since the beginning. She will go into Birmingham Heartlands Hospital on May 6th (Friday). She will then undergo two days of intense chemotherapy and then be transferred to Coventry University Hospital for four days of full-body radiation therapy (in essence, one is put in front of an X-ray which is left on for 30 minutes; this is done twice a day for four days). Then it's back to Birmingham where she will receive the injection of stem cells. The stem cells will have been extracted from her brother (who is an excellent match, thankfully!) over the previous two days, using a special machine which filters blood so that the stem cells are removed and the remaining blood re-inserted into the donor's system.

So, basically, 7th/8th: chemo; 9th-12th: radiation therapy; 13th: BMT.

I'll do a post on the implications of a bone-marrow transplant soon. In short, it's not good. It's necessary, and far preferable to chemo only given her test results, but it will mean a longer and more intensive recovery period, greater restrictions on future activities for a longer period of time, and a raft of risks and side-effects. I don't want to scare anyone who reads this: it is still very much the right choice, and the overall prognosis is pretty good, but the road to recovery is much harder with a BMT than without.

I will post more in the coming days to discuss Electra's living situation (complicated), the implication of a bone-marrow transplant (complicated also) and more. But in the interests of keeping this from becoming a novel, let me just say that the outlook is good but scary. Please keep Electra in your thoughts as much as possible, the next bit may be very scary.

Electra & AML: The Big D

(See all posts related to Electra's ongoing treatment)

So, there's a certain topic I have thus far avoided delving into: death. You'll have to excuse me if this post is a little less structured than some of the others, but that is a reflection of my thoughts, which are themselves a little unclear.

The fact of the matter is that this affliction is very serious. I know that's obvious, but I try to focus on the positives as much as possible: the advances in treatment, the high rate of success, the progress that Electra has made so far. But left untreated, AML has a mortality rate of 100%, often within months. The treatments have come a long way (a colleague of mine told me of her aunt who was treated several decades ago at a time when all they could do was a full blood transfusion every week or so). But they are not perfect, and as we've seen with recent revelations, things do not always go as smoothly as one would hope.

At the end of the day, the odds are good in this case, but nothing is guaranteed. Electra and I had "the death talk" the last time I was up, and she has been pushing me to make sure that I truly accept the possibility; that I genuinely take to heart that the worst possible outcome is possible, no matter how unlikely. She asked me whether I truly accepted that, and to be honest… I just don't know.

In a philosophical sense of the word, of course, we're all dying. Death really is the only thing we can be sure of in life, trite though that might be. And I engage in activities on a regular basis that dramatically increase my chances of dying (I'm thinking specifically of cycling in London, though I have no doubt there are others). So to be in denial about mortality seems foolish. But there's acknowledging that in a logical, academic way, and then there's really taking it to heart. And I don't know if I've done the latter.

I know I don't like to think about it, and definitely don't like to talk about it. Writing this blog post is a way of forcing myself to discuss the topic, and perhaps that's what it'll take to make me really internalise the concept. I guess I'm somewhat in a form of intentional denial; like the proverbial ostrich, perhaps if I refuse to acknowledge the possibility, that chance will disappear. Or perhaps it's simpler than that: I know what's possible, and know how easy it can be to get hung up on that idea and the accompanying fear, and am trying to avoid that. Because I am scared; whether I truly accept it or not, I do know the possible outcomes and there are some I don't want to consider. It may not be the healthiest way of dealing with it, though.

I'm generally a pretty good guy to have around in a crisis. When things go very wrong, I keep my cool, I assess the situation and I tackle things rationally and calmly. I freak out and get stressed by small to medium issues, but when the shit really hits the fan, I tend to become very focused. The upshot of this is that I tend to tackle logistics: what needs to be done, by when, what is the best way to achieve it, etc. My concern, I suppose, is that this coping mechanism may allow me to gloss over the bigger issues, the greater fears and perpetuate my denial, intentional or otherwise. And I'm clever enough to know that's not the healthiest approach in the long run. So I will try to accept it, whatever that means.

I am confident that Electra will pull through this ordeal with flying colours. Two years from now, I expect we will be stronger, healthier and happier than before, and will deal with the long-term ramifications of her treatment as they come (regular checkups, possible long-term medication requirements, etc.) I really do feel this is the case. But the shadow of that grim spectre does loom, quietly and forebodingly in the corner of my awareness, and it's time for me to accept his presence. I am confident that we will stave off his advances, but I should not (nay, cannot) ignore his existence.

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.

Electra & AML: Healthy Person's Guilt

(See all posts related to Electra's ongoing treatment)


You'll have to pardon a bit of self-indulgence at this point, as this is a bit of a philosophical wander. If you wish to skip this borderline narcissistic self-analysis, please feel free to jump to the update, below.

There is a concept in trauma psychology called survivor's guilt. In short (largely because I don't 100% know what I'm talking about and have no psych qualifications whatsoever), survivor's guilt is guilt experienced by those who survive (counter-intuitive, I know!). In the event of a major tragedy, let's say a plane crash, those who survive are often wracked with guilt, doubly so if loved ones perished in the tragedy. Typical thoughts are along the lines of "Why did they die and I survived?". Even though that person had no control over their fate, nor the fate of others, they feel guilty at the thought that their loved ones did nothing wrong, and often nothing different, yet perished in the incident.

Sometimes, I think the same thing applies in a case like this one. Electra is a very healthy person. She eats better than I do, exercises more than I do, avoids alcohol more fastidiously than I do and just generally maintains a better lifestyle in many ways than I. In other areas, we're on par: we don't smoke, do drugs, work with hazardous chemicals, etc. So by any measure, she should be healthier than I. Yet I sit in her hospital room alert, fairly well-rested and healthy, while she struggles with fatigue, nausea and other ailments, all down to her cancer, or the treatment thereof. For no rhyme or reason, she is sick and I am not.

I know life isn't fair, and I certainly don't expect that it should be so. I don't believe in fate, or god. I don't think there is a grand plan for the universe, and so the concept of a cosmic balance is anathema to my view of life. Yet as much as I may know this to be the case, I can find it hard to believe, to really internalise. And so I do feel guilty sometimes, and I suspect many others who love her feel likewise. The main way in which this guilt manifests itself is the feeling that I'm not doing enough. I call this "healthy person's guilt".

Now, before I go further, let me be crystal clear: this is absolutely not a fishing-for-compliments attempt. I know logically that I am helping and am not looking for reassurances of that fact. Further, for reasons I'm not entirely clear on, I don't take compliments terribly well, so I sincerely am not looking for any kind of ego boost from this, so please do not construe it as such.

Instead, the point I'm trying to make is that this feeling is endemic to these types of situations. Part of it is my own tendency to set lofty goals and then follow-through poorly. When Electra's condition came to light, I had visions of doing reams of research into the condition, the treatment, case studies and support groups, and intended to work towards becoming an AML expert, insofar as is possible for someone untrained in human biology and medical science. Instead, I've done none of this. I still provide care and support, the research side has gone nowhere.

Secondly, it can be tough for me when I'm down south. Now, I hesitate to write this, because I will be reading it to Electra shortly and I don't want her to think for a minute that she's imposing on me in any way or that I'm resentful of the time I spend here. I'm not at all, but Electra isn't exactly immune to needless feelings of guilt. Instead, my point is that while I know (again, in the logical part of my brain) that I need to spend time away for my own well-being and mental health, it can be hard to internalise and I do sometimes feel guilty when I am absent. This visit was preceded by a two-and-a-half-week block in the south, due to work commitments and a doctor's appointment of my own which I couldn't easily reschedule. But 18 days is too long and I won't be away for such an extended period again. I have also been late in arriving the past two days, and have forgotten to bring certain items (books etc.) with me, something else for which I feel guilty.

In the end, this is something I need to work through, and I am. It is hard for me to be away, but it's also re-energising. And I do know that I'm helping, even if that is just to be here, cut her hair, hold her hand and sneak her some chips. A patient's mental well-being is vital to recovery and I know that I am aiding in this way, to some degree. So the important thing to scope out is where I am right and can/should be doing more (i.e. arriving on time for my visits) and where I'm being irrational and self-immolating. In the latter instance, I need to let my logical brain rule more and make peace with the fact that while I cannot wave a magic wand and cure Electra, that I am doing that which is in my power to do in order to help. I just wish I felt like I was doing enough.

UPDATE
So, a general update on progress. Electra is now well and truly in the neutrapenic phase of her second cycle. She finished the chemo a week ago (Saturday the 19th to be specific), and her neutrophils dropped to zero mid-week. She was allowed a brief respite out of the hospital from Monday through Thursday, and has been back in since Thursday morning.

This cycle has been a bit of a mixed bag. The treatment itself was more traumatic (in cycle one, she felt relatively few ill-effects during the first week of the actual application of the chemo, this time around she was weak and nauseous frequently). However, the neutrapenic recovery period has been more varied. In the first cycle, she was walloped pretty hard. I wasn't present but was in frequent touch and I know how tough it truly was for her. Fatigue was constant, nausea frequent and infections common. This time around has been much better. Her energy levels are often OK and her appetite has been pretty good overall. She's been able to be more alert and enthusiastic, both in person and on the phone. However, there are still some serious down points. She is frequented by bouts of discomfort and a general unwell feeling. Eating can often be draining, and she's still not sleeping perfectly. Though she's avoided major infections, she's spiked fevers from time-to-time and has been sweaty or clammy on occasion. But overall, it does give confidence that she can react well to the treatment. Whereas the last neutrapenic phase was an all-out thrashing, this one has played out more like an even-handed battle.

She should be coming out of the neautrapenic phase in a week or so and will hopefully get the following week out of the hospital. I'll be returning to London on Tuesday with the intent of coming up as soon as she's out so we can spend some time together in an environment that's more hospitable (and less hospital heh heh heh).

And I really will try to post more, I promise.

Electra & AML: Once More Into The Breach Dear Friends

(See all posts related to Electra's ongoing treatment)

So, I haven't really kept up my plan of "post more often, if shorter posts". So let me start with a bit of an update:

Electra is currently back in hospital for round two of treatment. It was a little bit of a rocky road getting in there. The original plan was to have her get her bone marrow treatment on Tuesday the 1st and go back in for round two on Thursday (the 3rd). However, as I mentioned previously, she pushed it back to Thursday. Ultimately, the choice between painful procedure versus less painful procedure and additional weekend of freedom with myself was an easy choice. So in the end, she was scheduled to go back in on Monday (the 7th).

However, best laid plans being as they are, even this was ultimately altered. The ward she's in had no available beds, so she was asked to try again on Tuesday. Evidently, even though the first cycle must be administered with the utmost urgency, once wiped out the malformed "blast" cells take some time to come back, so the push to recommence is lessened. So she came back on Tuesday, when a bed freed up. However, still things were not as required. In the intervening time, Electra managed to pick up a nasty infection (probably another iteration of her recurring throat infection). Since chemo decimates one's immune system, they are loathe to start it while the patient is already ill. So, intravenous and oral antibiotics were the course of choice. The idea was to tackle the infection first and foremost, then commence chemo.

And yesterday (Saturday the 12th) was the kickoff. The infection had raged a bit, and Electra had been kept in the hospital the entire time for the sake of monitoring and administration of the antiobiotics. But by Friday, things were calming down and she was pushing to get chemo started on Saturday (as weird as it is to request the injection of poison into your veins, an early start does of course correspond to an early cessation). And she was successful! So she is currently (as I write this) completing her second day of round two.

This time around, though, it's been harder. We knew it would be, of course, so were somewhat prepared. But because her system was already at less than 100% when the treatment started, all the effects have been worse than the first time around. Cycle one didn't start to get bad until at least half-way through; cycle two started to get bad about a half-hour into the treatment. The symptoms were as before: nausea, fatigue, chills, etc. But this time they seemed much worse. Fortunately, Electra is getting better at asking for help in these instances (though it still takes some prodding from yours truly), and the anti-nausea meds have done a reasonable job.


On my end, the push back on the start date of chemo affected my plans. I'd intended to go up today, but Electra and I decided that it was best to have me present for the week after the actual chemo application (which is generally the hardest week and the one where she really needs support). So I've bumped it back until Wednesday the 23rd (due to a doctor's appointment of my own and a work commitment, I can't leave until that Wednesday). This will be the longest stretch we've had apart since this whole shebang started, and it will be very tough for both of us I think. I miss Electra quite a lot and though I know it's dumb, can't help but feel that I'm not doing my duty and really should be up there. Electra for her part, misses the comfort and support that I can provide, though she's been very clear that it's good for me to spend time in the South and not be a martyr in this. Plus, this longer period of time allows me to get some things done that I've been putting off too long. When I'm only home for a week at a time, I tend to triage much more than during longer breaks: I only deal with the most pressing "to do" items, so the myriad of little things I want to work on tend to slip. This longer break will give me a chance to correct that. But that doesn't mean it's not hard.


So, the treatment continues. This cycle promises to be harder than the first, a daunting prospect no doubt. But as usual, I am cautiously optimistic. Electra's progress during the first cycle was incredibly promising, and although there were bumps in the road in terms of infections and side-effects, these are to be expected and the key signs (response to the chemo and bounce-back time of her immune system) all point to a course of treatment bound for success. Doesn't mean I'm not keeping my fingers crossed while knocking on wood and rubbing a rabbit's foot wrapped around a four-leaf clover, but hope is present.

Electra & AML: The Eye of the Storm

(See all posts related to Electra's ongoing treatment)

This week has been one of respite, a nice change from the tedium, monotony and frustration of the hospital life: since last Friday (January 28th), Electra has been home from the hospital. Her neutrophils are up (as I mentioned earlier, these are the most common type of white blood cell and the chief weapon in the body's immune system). The measured level was sufficiently high that the hospital decided they'd had enough of her and kicked her out for some much-needed R&R (I may be paraphrasing the reasoning a little).

Unfortunately, due to a series of prior commitments I'd made when we'd assumed she'd be in the hospital much longer, I was confined to London for the weekend and Monday (I had an immovable presentation on Monday morning). So to my chagrin, I would miss the first weekend that Electra was to spend in comparative freedom, a rare gift in these times. We had various things to look forward to in home time-pancakes, sleeping in and movie nights principle amongst them. But alas, it was not to be. The schedule, as dictated by the hospital, was a blood test Monday, followed by a bone marrow test Tuesday and readmission to the hospital Thursday.

Monday went comparatively as planned, save for a return of the sore throat which originally triggered the tests leading to Electra's diagnosis. However, an examination showed this as nothing to be terribly worried about, and indeed it has faded since then. The car ride to and from the hospital drained Electra a lot, and she cancelled her planned evening with friends on Monday. That same day, I left directly from work and drove back up to Worcestershire, not the safest drive I've ever made as a result of my fatigue (another rant for another day), but I made it.

On Tuesday, Electra's imagination got the better of her. See, the first bone marrow test was intensely unpleasant for her, hardly surprising since it involves a large-gauge needle poking a hole in the back of one's hip bones. The problem is that while the test really is unpleasant, the thought of that unpleasantness can be daunting, and Electra found it difficult to go through a second time and asked the doctor if it were possible to be sedated. It was, but it meant she'd have to come back Thursday. This in turn meant she wouldn't be readmitted until Monday. When faced with the choice of pain and fear or free sedatives and another weekend at home (with me this time!), the choice was pretty straightforward. Even when I'm being hardest on myself, I still generally believe I'm preferable to a giant hip needle.

Yesterday (Wednesday) was a lovely evening out with four of Electra's friends. I haven't asked them for permission to use their names so they'll stay anonymous for not, but it was two couples, Electra's father and Electra & I. We went to a lovely little pub up the road from Electra's place, and had a very nice evening. It was also Electra's first time wearing the wig she got on the NHS scheme. It's very similar to her natural colour, though perhaps a touch more red in the highlights. It's semi-wavy and just to the shoulder. She looks good in it, and you wouldn't know it was a wig except that she hasn't figured out how to scratch her head without shifting around dramatically.

Today, then, was the revised date for the bone marrow biopsy. It all went well except that the sedatives didn't really kick in until about half an hour after the procedure. So Electra was lucid and somewhat pained by the procedure then loopy and happy and fun after the fact. Electra after sedation is similar to Electra after a few G&T's: friendly, loving, excited to see everyone, waving to passersby, and with a tendency to ramble on a bit, specifically about people and things she loves. Very endearing across the board.

Weeks like this are vital to the healing process, in my feeling. When dealing with something like cancer, there is a tendency for it to overwhelm every aspect of one's life. As a carer, I find this tough to escape: I take time for myself and spend some time just living and not thinking about cancer to whatever extent I can. But my thoughts wander as thoughts so often do. And they often drift back. In some ways, it's like when I was working on my Ph.D.; even when I took a night off, the shadow of my thesis loomed large, forever in the periphery of whatever I did. Some of this comes from wanting to keep people updated, and people checking in. And I really love that people care enough to want updates and don't ever want anyone to stop asking, but of course it makes forgetting about cancer-even for a day-difficult. Again, this is like the inevitable question I got during my postgrad ("How's the research/thesis going?" followed by the more-inevitable answer: "Rubbish. More beer please!").

So that makes this limited calm-in-between-storms all the more important. Because the shadow looms as dark and large as ever, but for awhile, we get to turn on an extra light or two and banish the dusk to the very corners of our lives. We get to watch mediocre TV, eat real meals, fall asleep and wake up together. And that break, that evanescent suspension of disbelief that life is as it was two months ago, helps provide the fortitude to persevere through the bad times. It is the security blanket of hope and reassurance that this, too, will end and normalcy and health will be restored. I only wish we had longer before the next onslaught.

On a more "meta" note, I'm hoping to slightly shift the way I make these posts. The dilemma of the lengthier posts such as this one is that writing them takes sufficiently long that I tend to put it off. Which of course gives me more to report one. So my new plan is to post more frequently, but shorter. So please stay tuned, and I'll try to fulfil that promise.

Electra & AML: The road to recovery

(See all posts related to Electra's ongoing treatment)

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.

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 my hyperchondriac 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.

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.

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.

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.

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.