Electra & AML: The News We Dreaded

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

I am afraid I must be the bearer of bad news in this post. Although the risks and potential outcomes of this disease have always been scary, and the recent prognosis has been especially dire, we always held out hope that we could beat the odds. Sadly, this is no longer the case.

Electra had a bone marrow biopsy this past Monday. This was to check on progress and while this would have occurred anyway in the course of treatment, it was especially important in this instance because Electra wasn't seeing the recovery speed that would be hoped for. At three weeks post-chemo, one would hope to see her immune system coming back in force, an end to the daily nausea and fatigue and her blood levels returning to normal. While the growth hormone (GCSF) had boosted her levels, they had fallen again. So the biopsy was ordered and was performed on Monday.

In a bone marrow biopsy, there are two types of samples: the aspirate and the trephine samples. The aspirate is the liquid goop inside the pelvic bone; the trephine is an actual cross-section of bone. Getting enough aspirate for a definitive sample is often difficult for patients who recently undertook chemotherapy, which is why the trephine is taken as well; however, the trephine sample takes a week to analyse, compared to a day or so for the aspirate. In Electra's case, they were able to get enough aspirate and a long section extracted from the bone which was smeared on a slide for further analysis. Between this smear and the aspirate, a definitive diagnosis was reached in a day, so we knew by Tuesday afternoon.

The diagnosis wasn't good. The sample was full of leukaemia cells; the cancer was very much still present. The FLAG chemo and DLI, for all its intensity, had failed to eradicate the disease. Although we haven't gotten the cytogenetics back, this indicates that the bone marrow tissue is Electra's, and that it would ultimately dominate the cellular growth. The chemo hadn't worked.

Those who have been reading my blog over the past weeks and months know what this truly means. This was our last chance. This was the only remaining option; our hail mary pass to try and beat this thing for once and for all. So now, there's nothing left to try. All the options are exhausted, all the hope dissolved. All that is left to Electra now is palliative care. This is the medical term for "waiting to die". We don't know how long this will be: it could be a few weeks or a few months, but the outcome is no longer uncertain.

At least, though, Electra has been able to leave the hospital. Although she is still neutrapenic and thus at risk of infection, there is no longer really much to be gained by maintaining a hospital residence. She has little enough time left that anything they could do would make only a small difference and would guarantee she didn't enjoy the time. Instead, we will try to live as much as we can for however long we have left. We will eat, live, love and try to enjoy everything we can until the inevitable end arrives (not only Electra and I, but her parents as well, both of whom are here in Birmingham). The other small victory is that the end will arrive largely pain-free and in relative comfort and what pain there is can be treated with pain killers. Electra will simply become more and more sleepy until one day she will painlessly slip into a coma. From there, we will have only a couple of days to say our last goodbyes and make our last peace.

I have to be honest: I don't know what to write here. I've been asked countless times over the course of this ordeal how I felt, and this hasn't exactly abated with the realisation that Electra, the girl I love so deeply, the most important part of my life for over three years, is going to die. And if I am at all honest in response, I have to admit that I don't know how I feel. How can I? I mean, I can spin it out for people, talk about how unfair it all is, how gutted and shocked I am, etc. But the reality? There is so much bouncing around in my head right now that I can't really nail down my feelings, and if I could, I don't know that I could put it into words.

To start with, this isn't really unexpected, but neither was it predicted. Leukaemia isn't as unbeatable as it was a few years ago, but neither is it a walk in the park; moreover, we've known since December that her odds this time around were highly unfavourable. So we've had time to prepare, both practically and emotionally. But whenever there is any hope, any chance that a cure might be attained, you hold onto that hope, at least to some extent. You have to, because to give up is suicide. But now that ever-faint glimmer has finally flickered to gloom. So I do feel defeated.

But of course, there's more than that. Some of it obvious. I regret where I didn't treat Electra as well as I should have. I regret the time we spent apart and that we never managed to live together. I regret that we never travelled to the places we dreamed of, that we never got to adopt our puppies (Gaius and Caprica) nor our kittens (Shockley and Bardeen). I regret that I never saw her parents' summer home that provided so many great memories for Electra and that she never got to introduce me to her favourite Montreal haunts and restaurants.

And I guess that's what strikes me the most of this. The empty spot in my future, the blind patch in my dreams. I lament what we never did, more than what we did wrong, for it is missed and unfulfilled potential.

But beyond that, I don't know how to feel. It may be that I'm avoiding my emotions or that I lack the facilities to really grasp them. It may be that this is just too big to take in all at once. I bury myself in the facts and numbers, in the prognostications and planning. And I've realised that this is my way of avoidance. Paradoxically, by focusing on the reality of the situation and accepting what is to come, it may be that I'm avoiding actually internalising it. All I know is that a huge part of my life is about to go missing and I can't honestly say how I will feel when that happens. And that's a little scary.