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:
- Do nothing
- Palliative care
- Azacitidine with DLI (donor leukocyte infusion)
- 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.
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