Electra & AML: The Hard Truth

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

I'm currently up in Birmingham again, having spent the last ten days or so down in London (facilitated by the arrival of Electra's mother, who has been able to keep her company in  my absence). I'm going up in a rather anxious state, as yesterday and today have been somewhat tumultuous days in Electra's progress. Hit by an infection, Electra spent most of the day with a fever of 39 degrees and up, periodic low blood pressure and erratic pulse rates. Basically all the signs of a nasty infection; the exact type of thing you fear in an immune-depleted patient recovering from chemotherapy. The hard truth of the current situation is that, even when things seem good and stable, danger and fear are constant companions. And I think that I have perhaps skirted the hardest realities of the situation for too long.

WARNING: In this post, I am going to try and give the unvarnished truth. While things are by no means hopeless, some of the things I will discuss are pretty grim. This may be hard to read; it's certainly been hard to experience.

The biggest and harshest reality is the overall prognosis. I've said in past posts that leukaemia has been one of the big research wins in medical science over the past decades, and this is certainly true; the mortality rate is nowhere near as high as it used to be. However, Electra's case is now one of fairly early relapse. That changes things quite a bit. The relapse itself indicates that the cancer is quite tenacious and pernicious; while it was all but destroyed, it has come roaring back, obviously indicating a very tough instance of the cancer. This is further seen in her biopsy results, which showed a drop in the amount of donor DNA in her bone marrow: from a peak of 98% donor DNA, she dropped to about 58% by the middle of December when she was diagnosed. Her own bone marrow cells are fighting back and multiplying quickly, but multiplying the cancerous cells. In addition, the trisomy-8 genetic anomaly that was previously wiped out has returned, and has come with two new genetic anomalies involving transposed genes. The details of what this implies are beyond me, but the takeaway is this: her disease has mutated. If these conditions had existed initially, she would have been in a higher risk group. So the cancer is mutating into an even tougher form than it was initially.

The prognosis, therefore, is much, much less certain. The consultant with whom we spoke pegged it at a 5-10% chance of a cure, as I've discussed previously. What I'd not realised at the time (or perhaps blocked out) was that this is the last chance. If the cancer comes back again, there is nothing that can be done-no more chemo, no more transplants, nothing. 5-10% is her overall odds, and the time frames, though much less certain, aren't great either (12-24 months if we're being optimistic, which is tough to do given the recurrence happened after 6.5 months of remission last time). So, miracles can happen and 5-10% isn't nothing, but it's not exactly encouraging. Further, I've noticed that there's been a marked change in the way the doctors discuss longer outcomes. The focus is, in medical parlance, "extending life". We are trying to stay hopeful, but the deck is much more heavily stacked against Electra this time around.

On top of this, this stint in the hospital has proven much tougher for Electra, both emotionally and physically. Emotionally, I think it's made harder by the feeling that she was done with this. She was in remission, she was out of the hospital save for routine blood work as a day patient, etc. To be pulled back in is heart-rending, and not improved by the grim prognosis. So spirits have waned rather dramatically, escape attempts pondered, tears shed and depression has made a few appearances. Physically, the single biggest recurring phenomenon here has been one of utter discomfort. Electra simply cannot find any position-lying or sitting-that is comfortable. This obviously impedes sleep, makes it even more depressing, and just generally makes the experience more horrible that it would otherwise be. On top of this, she has struggled with a day of unexplained lower-back agony, sudden and severe nausea and vomiting, a loss of appetite and more. Plus, a nearly constant fever often lasting for days.

Today was especially bad. As I said earlier, Electra seems to have acquired a rather nasty infection and spent most of the day spiking a temperature in the low 40s. With antibiotics and paracetamol, they were able to bring it down to 39˚, and even as low as 38.2˚, but never out of the range they worry about. She's been put on the critical care nursing list, so has greater supervision and checks, but this is obviously yet another worrying development. And, of course, fevers of that range are often accompanied by delirium (not the good kind), fatigue, more nausea/vomiting and further discomfort. Between infections and the side effects of the chemo, she is being battered from every direction with massive intensity.

I don't want this post to scare people too much. Some of what Electra has been going through is expected, and some of it doesn't even indicate a particular problem per se. But the topic of mortality, especially of someone I love so deeply, is a difficult subject for me to broach, yet one I need to force myself to do, as it is a likely outcome based on what they know. And because it is hard for me to discuss, or even to think about, I fear I often soften or skirt around such issues, both internally and in this forum. And anyone reading this deserves the truth of the situation, no matter how scary it is. 

We are not giving up hope, nor are we foregoing planning and dreaming for the future. It is important we do neither of these things. But it is equally important that we also accept, understand and prepare for the reality of the situation. And right now, that reality is full of ominous portent and very reasonable fear.

UPDATE: I wrote-but didn't post this-yesterday. I've just got back from the hospital now and although Electra is still struggling with periodic fevers and nausea, when I left her, her temperature seemed good, blood pressure was OK and her colour had come back (she was very pale and almost jaundiced looking when I arrived). We still don't know what infection she's got, but it's either healing, or least in a temporary respite.