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: 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.