Electra & AML: The Decline

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

It's amazing how much of a difference two days can make. I left Birmingham on Sunday afternoon and came back Tuesday late at night. Things have been getting worse for some time in a slow slide towards the end, a trend I expected to continue. What I did not expect, or at least didn't fully appreciate, was how rapidly and dramatically the decline truly would be. We'd been warned that when the end started to approach and things were going form bad to worse, that a quick slide was to be expected. When things started to go really bad, they would do so quickly. So I should've known. But I guess I still felt that two days would show a fairly steady trend; I expected no real improvement, but neither did I expect a visible decline.

When I left, Electra was in pretty bad shape. She would sleep most of the days, and be pretty groggy while awake. Her energy levels, so heavily depleted already had dropped to minimal levels, meaning that the smallest of movements or exertions would drain her completely. Indeed, on a few occasions, the 10 metres between the bathroom and bedroom so thoroughly deprived her of vitality that she would collapse to the floor and need to rest there for 15 minutes before completing the journey. So she was very weary, very drained.

When I returned on Tuesday, the situation was markedly worse, as improbable as I felt that to be when I'd left. The short trip to the bathroom had become too strenuous in every occasion; she simply could not make it in one go even once. She was continuing to sleep more and more, and the night I arrived, she vomited three times, a frequency not seen for months. Furthermore, her sleep was more disturbed than I'd witnessed before; crying out, mumbling, twitching and trouble breathing dominated. She'd acquired a rattly, hollow sound to her breathing at times. The situation was as dire as I've witnessed, as bad as it was at the peak of treatment, but with no hope of a recovery this time.

Today was every bit as bad. Electra has not truly been awake all day. She had a few minutes of lucidity in the morning when the nurses visited (their visits are now daily rather than weekly). But other than that, she has slept fitfully, talking and crying out in nonsensical gibberish, sometimes trying to sit up or open her eyes, but much more often floating in a haze of medication, a failing body and eternal fatigue. Some of this may be due to the extra anti-anxiety pill she took this morning (to facilitate a procedure by the nurses). But more likely, it is yet another sign of her accelerating and inexorable decline. The end really is coming, and I think it's coming soon.

For my side of things, this has been a bit of a breaking point. Throughout these ordeals, I have continued to work, largely remotely (from Birmingham), though with frequent visits to my office. Lately, as Electra's condition has worsened, this has become harder and harder. My stress has gone up and my focus down. I lash out when I shouldn't and fail to stay on task when I should. As it is clear we are in the waning days of Electra's life, I have elected to take medical leave for the stress, and will likely continue to do so, through medical leave and vacation time-until the end of Electra's life and for some time after. I will spend my time here in Birmingham with her.

I should note again that my employer, Ericsson, truly has been exemplary throughout this 15-month trudge. From letting me work remotely, to allowing me to take annual leave with no notice, and always making sure that supporting me is their goal, they have made this whole thing much easier than it could have been. I discussed taking medical leave with my team lead on Monday, and he continued to reinforce the point that they would support whatever course of action I felt was best. At the time, I thought it would be to continue working for some time. This has turned out to be untenable and I don't want to claim to be working when I am in fact so far at the end of my tether that I am ultimately producing nothing; for this reason, I think stress-related medical leave is the right choice. It's great to have an employer who's got my back enough to support that choice.

Aside from the scariness and unpleasantness of Electra's current state, this sharp drop in quality of life further emphasises that rapidity with which the end is approaching. For the first time, I've managed to get a rough time estimate out of one of her medical care team. One of the hospice workers, visiting today, confirmed that my estimate of a week or two left is probably about right. A week or two. It's hard to see that written like that, and hard to imagine that in the next fortnight my world will become so much smaller.