Electra & AML: A Bad Week

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

NOTE: This blog post was written over the course of several days in which I've been both lazy and unfocused, so some things have changed slightly over the course of that time. I'll try to be coherent but make no guarantees.


I will endeavour to post more in (and more regularly) in the coming weeks, but I'm finding it hard to concentrate on much these days. Focus, often elusive for me seems to have left me entirely. I have several more thoughts that build off this post, though, so I will try.

I've spent most of last week and the start of this one in Birmingham, and while I'm glad to have been there to lend some comfort, it was not an easy week. To be blunt, things are not going very well. Electra had a few good days while I was there but many more very bad ones.

At this stage of treatment (and for the near future), the biggest risk to Electra is an infection. Though there are other things to worry about (recurrence of the cancer and GVHD), infection is the primary concern right now. With her immune system depleted by the chemo, her body lacks the ability to fight off disease, so even a simple cough or cold can be deadly. This is why she is in a solo/isolation room and why certain precautions are observed, specifically relating to food, visitors, etc. However, the possibility of infection can never be entirely eliminated, and that reality was one that has reared its ugly head.

Starting about ten days ago, Electra started spiking a fever. The normal temperature for a human being is 36.6˚C. The hospital considers it to be a fever worth worrying about at 38˚. Electra peaked at slightly over 40˚. She then had a fever every day until yesterday. On top of this, she was in constant discomfort, generally in and out of sleep (but mostly asleep, albeit fitfully), was nauseous and vomiting, weak and tired and not infrequently in pain. In short, she was unwell in almost every way possible.

There are several implications of this, none of them good. At this stage in recovery, an infection is the most dangerous thing (as I said above). So there is a very real risk that something small and benign (to an average, healthy person) can be hugely damaging or even fatal. But more than this, it indicates that her immune system isn't rebounding; this is backed up by her continuing low white cell count. To try and ameliorate the situation, she was put back on GCSF, the growth hormone which can spur the development of more white cells. This, however, will only work if there are a few already beginning to develop (i.e. her bone marrow is at least beginning to return). In the absence of any early white cells, the GCSF will do exactly nothing at all.

The good news is that this appears to be working. Over the last few days, her white count has started to slowly tick upwards and her overall sense of healthiness has very slightly improved. She is still miles from healthy, but at least she is apparently edging in the right direction, albeit hesitantly. On Monday, she will go in for another bone marrow biopsy, which will determine whether there's been any regrowth, and if so whether it is her DNA or her brother's and whether it is free of leukaemia. Unfortunately, the odds of purely healthy regrowth is slim, but we will hope for the best and I will post about that another day. One fight at a time.

The most poignant part of this for all me was that watching this unfold, sitting by her bed for hours at a time while she slept or struggled to rouse herself and keep even the smallest amount of food and water down, is the sense of reality it drives home. I'm a numbers guy; I know what the odds are here (not good) and I know what the probable outcome is. I understand what we do to try and improve those numbers. But numbers are dispassionate and clinical. This isn't. This is real.

Electra has obviously been visible in dire straights before, and I've written about that. But this is different. Because the outcome is so daunting now, the pain of seeing her in such a state is compounded by the terror that this is the first step on a dark and empty path. Put simply, this is the first time it seemed like she really might die. It's the first time that I've been this scared.

On Electra's side, this has also made it the worst hospital stay thus far, from an emotional viewpoint. By dint of her earlier remission, there was a real sense that she was somewhat in the clear (as much so as is ever possible with cancer). There were very real concerns of course-how to reintegrate with work, how to get her strength back, how to find meaning in a normal life after months of focusing only on recovery. But these were all overshadowed by having wrested her life back from the pincers of cancer. To then be trust back into the thick of it, and to undergo such horrible health is a soul-destroying and emotionally crippling slap in the face. More than this, however, is the intent of pursuing this tougher treatment. When Electra elected to go through the tougher FLAG chemo, it was with the intent of trying to achieve a cure, and failing that, be in passable-enough health to be able to travel and relax while recuperating. Now it felt like that was being taken away and she might be destined to finish her days in discomfort and pain, confined to a hospital bed in Birmingham, 6000km from "home". I don't imagine I need to explain that this is the type of thing that can break someone, and while Electra has remained stronger than I would have, it has taken its toll.

Still, with her white cell count slowly ticking upwards, it is possible that we may have the faintest of glimmers at the end of this obsidian tunnel. We're not popping the champagne corks just yet, but it's fair to say that the appropriate fingers have been crossed. Now for the biopsy and its eventual results…

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.