Electra & AML: Christmas update

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

A minor, but very vital part of Electra's recent re-diagnosis was the question of New Years Eve. Specifically, the timing of the recommencement of the treatment. As her relapse only occurred (or at least was identified) in the middle of December, the doctor informed us that she would need to start treatment either early in the new year, or in-between Christmas and New Year. We dearly hoped for the first option, an early January start. This, however, would depend on her blood levels; if her white cell count stayed high, she could start in the new year. Were it to drop, she would have to check into the hospital shortly after Christmas and begin treatment. At the risk of giving away spoilers, we were thrilled to be told that we should be able to make it to New Years Eve (pending a final check this coming Wednesday to ensure all was OK).

To some, this may seem strange. Indeed, when describing it to one of my closest friends, he quite reasonably asked why we wouldn't start immediately, regardless of the results of the blood work. You see, the efficacy of the treatment is increased when it is administered earlier. As chemotherapy is targeted to attack cancerous cells (with the healthy ones taking a hit as collateral damage), the greater the concentration of "bad" cells, the greater the force standing in opposition to the treatment, and the less effective it is liable to be. As is the case with most cancers, early detection and treatment can often have a profound effect. So why not start the minute the diagnosis is reached?

The reason is life. Not surviving, not just getting through, but life. We want as much life as we can possibly ring out of whatever time is left. Although we are obviously trying to maximise the quantity of available time, more importantly perhaps is trying to maximise the quality. When things are at their very darkest and it becomes increasingly harder to see in front of you, even the dimmest, most flickering light becomes a beacon, something to strive for and dream of. A flame in the dark is the very essence of guidance and hope. So each victory, each bit of enjoyment, each "win"… they matter. More than they ever have before.

The terrifying, horrible reality is that there is now a very real chance we may not get to spend next Christmas and New Years together. Though we were together last New Years Eve, Electra was diagnosed at 2:00 PM and connected to chemotherapy at 7:00. We did not truly have a New Years Eve. So, dammit, we will do so this year.

Fighting cancer is a siege, not a lightning war. The process is long, draining, and demoralising and is won not through pitched battles and intense triumphs, but through inches. When full victories are won, they come on the back of a hard-fought slog, digging through the deepest trenches of human physiology to stand upon the pinnacle of health and well-being, glorious victories celebrated all the more for the exhaustive battle of wills required to achieve them.

And in a years-long battle of inches, every win matters. We celebrate when the blood counts go up, we celebrate when the need for antibiotics goes down. A bit more energy or a bit less of a cough. A reduced temperature or an increased stamina. Every victory counts. And every victory, no matter how small, is treasured. And that treasure keeps you going.

New Years Eve is often overblown in importance. Ultimately, it marks the passing of a single day as much as it does a full year. But our traditions and customs define-to a very large extent-our priorities and our core values. And New Years Eve is therefore more portentous than other days. It is a chance to reflect on the past year and prepare for the next, to right the wrongs and further improve the rights. So we celebrate. We celebrate with friends; we celebrate with family; we celebrate with loved ones, and with love itself. So New Years Eve matters.

December 31st, 2011 will very hopefully see Electra and I celebrating the coming of 2012 with a group of close friends in a small cottage in the south of England. We will drink, we will eat, we will sing and talk and hug and love and be merry. The new year will bring tougher battles and more brutal fights, but those are for another day. For one night, for one glorious, celebratory, joyous evening, we will be as we were before cancer and before chemotherapy: hopeful, uncomplicated and revelling in all that this wonderful, flawed, beautiful world has to offer. That matters, because that is living. And we will live.

Electra & AML: The Reality of What's To Come

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

Today was the meeting. The meeting I alluded to in my last post, where we'd meet with the consulting haematologist for an idea of what our options were and what the prognosis and next steps were to be. It was a meeting we approached with some trepidation, as our last meeting had left us rather bereft of optimism or straws at which to grasp. Electra's parents have flown over to attend this meeting with us, support which is both direly needed and greatly appreciated. It also gave us a chance to try and assemble as comprehensive a list of questions as we could come up with, a task we did Thursday night.

The meeting and discussion went as well as could be expected. Unfortunately in this instance, that implies that the results were dire, though not wholly hopeless. I will go into greater detail as desired in future posts, but in essence, there are four treatment options presented:

1. Do nothing
2. Palliative care
3. Azacitidine with DLI (donor leukocyte infusion)
4. FLAG treatment with DLI.

The latter two options are two very different courses of chemotherapy, and the only options really worth considering. Do nothing, the full-surrender approach would give a life expectancy measured in weeks; that time period would be largely defined by discomfort and possibly outright agony. Palliative care wouldn't be much better; though the suffering would be eased through routine blood transfusions and pain killers, the prognosis would be clear: a short period of unpleasantness followed by an untimely end.

So, that leaves the two types of chemotherapy. Azacitidine is a much more mild form of chemo than Electra has experienced thus far. It requires daily chemo injections for seven days followed by three weeks of rest, all of which can be done on an out-patient basis (i.e. she wouldn't have to stay in the hospital except for the first cycle as a precaution). This pattern is repeated six times over half a year. It is, however, the "stall" to which I alluded yesterday. There is no chance that it would cure the cancer; all we would hope for would be extending her life and in the best case, temporary remission. If luck were with us (a condition that has not historically been the case), the leukaemia would be in remission long enough for more drastic treatment-another bone marrow transplant or a more intense form of chemo. In either event, though the chemo itself would be mild (no hair loss, minimal nausea and pain, etc), successful results of any kind are far from guaranteed.

The fourth option is the so-called "FLAG" course of chemotherapy (I will leave the details of the medications involved to the reader). This form of chemo lies in-between the azacitidine and a bone marrow transplant in terms of intensity. It will potentially cause hair loss, nausea, weakness, and all the other nastiness that went with Electra's earlier rounds of chemo. It's a one-week course followed by three weeks of recovery (all as an in-patient, i.e. requiring a full-time stay in the hospital). Only a single cycle is prescribed. On completion-and return to home-Electra would be routinely monitored, but should ideally be able to recover in decent time and hopefully achieve remission. Again, this would then involve a reassessment to determine the future course of action. This treatment carries with it a slim (5-10%) change of a "cure", the possibility that the cancer might not return.

None of these options are good ones. Do-nothing and palliative care are outright death sentences. As initially described to us, AML is "universally fatal" without treatment. The two courses of chemo improve the odds, but are far from certain: either course could fail to push the leukaemia into remission and each introduces risks of opportunistic infections or overtaxing her system. But there's that chance that they might buy some time, or–in the case of FLAG + DLI–maybe even cure her condition.

Electra had made her decision by the time the conversation with the doctor was concluded. It was to be the FLAG treatment. She cannot face daily injections for a week, repeated six times over the course of a half-year. And the azacitidine is guaranteed to never cure her condition. FLAG is the only bet for a cure, and will hopefully give her a leg up on the disease long enough to seek a more comprehensive cure if it does not achieve that miracle itself. Depending on her blood levels next Friday, this treatment may have to begin between Christmas and New Years, or may be able to wait until the very start of 2012. We are dearly hoping for the latter; having missed last New Year's Eve, it would be truly rewarding to enjoy this year's.

Those are the facts. And that's where my comfort ends. I can understand facts. I can evaluate and compare and rationalise facts. What I cannot do, what I am struggling with now and simply cannot truly wrap my mind around, is the emotional implications. None of these choices are good ones and the doctor was kind enough to not engender false hope. So I know that the risks are everywhere and the chance of success far from a sure thing. I get that. But I can't get used to that. I have spoken previously about the very real possibility that this might be fatal. But that possibility is more real than it's ever been, and I don't know how to face that.

Throughout this whole process, and especially over the last few months of remission, it's been easy to internalise the idea of mortality because it's felt like an abstract idea. It's like accepting that I might die riding my bike through London (or riding in a car or flying on a plane). The possibility is always there (and having recently been hit a second time on my bike is often a clear and present threat). But it's not at the forefront of my consciousness, nor is it an omnipresent worry. It's just a distant possibility that with diligence and prudence can be minimised. That is no longer the case; near-future mortality is now a plausible and even likely outcome, and I don't know how to handle it. Maybe I never will and never can.

Right now, I'm more confused and more messed up than I can remember being. I'm neither autistic nor sociopathic, but I don't always deal with emotion well, or clearly. I know I'm angry, I know I'm sad and I know I'm confused and upset at the unfairness of the world. Beyond that, I just feel adrift and isolated, confused and powerless. Our relationship has never been 100% perfect (whose is?) but it's been the defining feature of the last three years of my life and the most important relationship I've ever had. I've had many ideas of what I wanted for the future; whatever comes over the next year was not amongst those ideas. And that is scary, sad and terrifying, all at the same time.

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.