Electra & AML: Ups and Downs

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

Apologies for the gap in posting. As you can no doubt imagine, the news of the recurrence and the prognosis was a bit of shock, even though we knew Electra's odds weren't great going into this round of chemo. Although I think we're handling it well overall, I know that I've found it very hard to concentrate on much of anything of any substance and blogging falls into that domain and has thus been neglected. Allow me to bring everyone up to date.

We are now more than three weeks post-diagnosis. It's been a tumultuous and emotional ride. Hearing you are going to die (or that a loved one is) is one of those things you're never really prepared for and to which the reaction is anything but predictable. From Electra's initial re-diagnosis in December, we knew the odds against success were pretty grim (5-10%). But it is something for which one really cannot prepare oneself, as much as we tried. When there is even a glimmer of hope, that hope is a raft in an icy storm and a light on the horizon and you hold onto it with everything you've got. So while we were realistic about the odds, we also clung to the dream that she would beat them. Beyond that, we'd hoped for more time. The chance to travel a bit, the chance to enjoy a little more life. It's clear now that this won't happen and that was more shocking than anything else.

In the intervening time, we have kept busy. Aside from the hospital, hospice and GP visits to ensure that Electra's care is handled as well as possible and that she's kept comfortable and pain-free, there has been a steady stream of well-wishers and visitors. When the diagnosis was given, Electra decided to host a small gathering to celebrate her life and say farewell to a few close friends and family. It was small and intimate, but an excellent idea. By framing it as a celebration of life, Electra was able to ensure that the mood was as upbeat as possible, that people could say goodbye without feeling overwhelmed and that what will be the final farewell for many brought with it some positive thoughts and memories.

In addition to this party, Electra's cousin and aunt have been visiting for ten days or so, and my parents for the last week. This was ultimately a bit of a mixed bag. While the visits were low-key and often involved a lot of sitting and chatting, it dramatically increased the number of people who were present on a daily basis, and this brought a degree of stress into Electra's days that should possibly have been avoided. She was a trooper for all of it though, so even when the stress was high, she persevered. We got her a wheelchair, which has allowed her to get out of the house sometimes, as she would often have the energy to be out but not to walk there and back. Through dinners out and days in, she always did her best to engage with all of us. This was tough at times, however, especially so later in this past week.

Which brings me to the question at the fore of everyone's mind: how is she doing. Unfortunately, the answer is "not great at the moment". Electra got a platelet transfusion on Monday and three units of blood on Tuesday, and the effect was immense. Her colour got better, bumps and bruises and cuts healed and her energy and spirits jumped dramatically. Though she would still tire readily, she really didn't look terribly sick. As the week progressed, however, that got steadily worse in pretty much every metric. When I left on Sunday, she had been asleep most of the day, had little to no energy when awake, was pale and sallow, was getting spots and bruises as a result of her dwindling platelet count, and was bleeding from her gums (again because of the platelets). In short, she seemed as sick as she really is.

This is scary to me and really drives home the reality of the situation in a way that a logical and cogent understanding cannot. Even for someone as bound to scientific fact as myself, this felt more surreal than real at times and seeing Electra moderately hale and hearty made it easy to put aside the reality of the situation. But this weekend changed that. Although the spots on her skin are minor, they herald the somber reality of what to come. Though seemingly innocuous on their own, they are the harbingers of her inevitable future.

I don't know whether Electra's deteriorated condition is a result of an intense week of friends, family, food and chat, or whether this is the first major step on the inevitable path to the end. She will receive platelets on Monday and will have her blood tested, possibly (likely in my view) triggering a transfusion of blood to boost her haemoglobin count, and thus her energy. And this will be very telling, I think. With a couple good days of rest and a transfusion of blood and platelets, hopefully she will pick up and show us that the past week was one of over-exertion. But I'm worried that the end of days is approaching; I worry that the energy loss and other symptoms are all that is left to expect and that the efficacy of these measures will ever dwindle going forward.

I worry I am losing my love. And I've never been more powerless.