Electra & AML: Farewell My Sweetness

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I'm afraid that I have to announce this, but Electra Elizabeth Risacher passed on this morning. At approximately 5:04AM GMT, after a short time in coma, she drew her last breath. She was surrounded by her mother, father and myself and died with us holding her hands and stroking her hair. She finished her life as she wanted to: in her own bed, at home, surrounded by love and family, largely pain-free and calm. Her last truly coherent thoughts were to express her love for her family. She will be missed beyond all measure and the world is truly a darker place today for her absence, but we are glad that her passing was without excess trauma or pain and that she didn't linger long in her coma. Funeral details will follow; for now, we thank you all for your love and compassion in these difficult times.

I'm not going to go into a great amount of detail on this at the moment. My mind isn't in the right place, and I need to gather my thoughts before I can write anything of substance. But more will follow soon. I just wanted to make this announcement.

Electra Elizabeth Risacher
October 20, 1979 - March 16, 2012

Farewell my wonderful, beautiful sweetness. You are loved and you are missed.

Electra & AML: The Asymptote

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There is a concept in math that-though seemingly obvious-actually took millennia to invent: the concept of zero. The reason is that the difference between one and zero is unlike the difference between any other two numbers. The concept of a vacuum is so disconcerting to our minds that it actually inspired a debate amongst Greek philosophers as to whether such a concept even had merit. So, zero is kind of a big deal. The difference between something and nothing is monumental.

One of the many ways in which this comes into play is the idea of an asymptote. Without getting too math-nerdy, an asymptote is a curve which forever approaches a number (often, but not necessarily zero), but never touches it. For example, think of starting with a pile of money and cutting it in half every day. On day one, you have $100. Then $50, $25, $12.50, $6.25, etc. With each step, you get closer and closer to zero, but you will never really get there. An asymptote is a mathematical concept for a progression that always seems to be very very close to something, but never actually arrives.

Why am I talking about this? Because our asymptote is approaching zero. But ours will hit zero, unlike the math's. And I've only just realised, I was treating this illness like a true asymptote. I knew our ordeal would be long and that a decline was inevitable. I knew that we would approach death, getting closer and closer with each passing day, and near the end coming so close that the difference was barely observable. But in a very real way, I'm only just now realising that Electra is going to hit zero, and she's going to hit it soon. And I've not really realised what that means until now. Because I thought I was ready for what was to come; but really, I was only ready for the asymptote.

You see, we knew from the outset that this was going to be a long haul struggle, and it has been. Even when the outcome was certain, the hope finally dissipated, the prognosis was a slow slide into oblivion. So, you get used to the slide, you adjust to the asymptote. Things get worse, but you expect them to, and you realign your expectations accordingly. We got a wheelchair when Electra found walking tiring. We changed her meds as she reacted better or worse to her regimen. We added in meal replacements, adjusted furniture and got medical aids to accomodate her declining state. We've been carers of a sick person for over a year now and that simply became the norm. And when it got worse, that was simply another adjustment. As she got more and more tired, our norm shifted, but stayed in the same ballpark.

Now it's different. Electra is almost completely gone at this point. I don't know exactly what constitutes a coma as opposed to an ongoing and deep sleep, so I don't know if she's technically in a coma or not, but she might as well be if she isn't. She hasn't been awake in any meaningful way in the past day. She stirred at times, even spoke periodically as recently as this morning (asking for water and taking her medications). But today was the end of any responsiveness. As I write this, Electra is beside me. Her breathing is ragged and shallow, her eyes open a slit and unfocused. She is fully immobile, her limbs and extremities flaccid and motionless. She hasn't responded to being spoken to in hours. She is breathing and has a pulse, but everything that made her who she is, everything that defines the woman I fell in love with, is gone.

It turns out, the difference between something and nothing is bigger than I was ready for.

Objectively, I know that you can never be truly ready for something like this. You can prepare. You can make plans and discuss outcomes and intents. You can say "death" out loud to force yourself to accept that this is the reality. You can talk about what to do before and what to do after. You can-and I did-feel like you're ready. You're not. You can't be. Because you're only truly preparing for a further slide closer to zero and not for the drop to nothing.

We haven't yet hit zero, but it feels like we have. Electra is gone in every sense but the most fundamental biological functioning and she's not coming back. There is no hope of a last-minute turn-around, no chance that this is just another step along the decline. This is the beginning of the truest end, the end that awaits all of us. And it turns out I'm not ready for that.

I want another day, another week, another month or another year. I want to bounce up on the bed and blow a raspberry on her tummy until she convulses in laughter. I want to plan our next vacation. I want to adopt the puppies we longed for and even named (Gaius and Caprica, FYI). I want to see her giggle and clap her hands in glee like a child when she's excited about something. I want to rant to her about the latest Apple vs Microsoft development. I want to complain about the train fare and show her the new lights I affixed to my bike. I want to collect the keys to the first house we share. I want to take her for the first ride in the first car I'll buy. I want to cook her another batch of pancakes. I want our life together to truly begin. But that will never happen.

Let me use another, arguably even nerdier analogy. One of the fundamental concepts in quantum theory is the idea of the superposition. The idea says that for very small objects, we can never truly tell where they are at the same time as we can tell their momentum. The location of (for example) an electron orbiting a nucleus is defined by a 3D probability functions called a wavefunction. There is a certain chance it is in any given location, but nothing guaranteed. One of the weirder sides to this is that at any given time, the electron actually exists in all locations simultaneously. Only when its location is measured in some way does the wavefunction "collapse" and the actual location is set. The most famous thought experiment that stems from this is Shrödinger's Cat. I'll leave the details of the thought experiment to the reader, but the upshot is this: at one point, the cat is simultaneously dead and alive; only when the box is opened does the wavefunction collapse and the cat's nature become measurable.

Electra's wavefunction is collapsing. Even when her diagnosis was confirmed, I guess I instinctively felt there was a tiny sliver of hope. Technically, there is a chance, infinitesimal though it is, that an electron bound to a carbon atom in your thumb is actually located on the surface of the moon. It's unlikely but the possibility exists. Similarly, although I knew Electra's fate, a part of me clung to that most minute of hopes. That some twist would yet emerge. That as long as she was awake and conscious that it could still turn around. A zero-day cure could be found, or a dramatic reversal of fortune caused by a resurgent immune system. But moreover, just the vague, undirected hope that this wasn't it. That we'd have more time. And now, before my eyes, I can see that wavefunction collapse. There is nothing left but waiting for her breath to stop and her heart to be still. The essence of who she is has gone.

Many of the people who have written me to express support and condolences, (and I thank you all for doing so), have stated how they cannot even beging to understand how I feel. The reality is this: I can't either. I am empty and lonely and hopeless in a way I've never experienced. I feel broken and desolate. But beyond that, I just don't know. I don't think I can put a label on it beyond feeling wrong. The notion of a world without Electra in it is inconceivable, like waking up one day to find out that one plus one equals three. And yet here we are; for the first time, that world truly is upon us. I don't know how to react to a world so familiar, yet so completely alien. I'm not ready for this. I thought the asymptote would stretch on forever.

Electra & AML: The Decline

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It's amazing how much of a difference two days can make. I left Birmingham on Sunday afternoon and came back Tuesday late at night. Things have been getting worse for some time in a slow slide towards the end, a trend I expected to continue. What I did not expect, or at least didn't fully appreciate, was how rapidly and dramatically the decline truly would be. We'd been warned that when the end started to approach and things were going form bad to worse, that a quick slide was to be expected. When things started to go really bad, they would do so quickly. So I should've known. But I guess I still felt that two days would show a fairly steady trend; I expected no real improvement, but neither did I expect a visible decline.

When I left, Electra was in pretty bad shape. She would sleep most of the days, and be pretty groggy while awake. Her energy levels, so heavily depleted already had dropped to minimal levels, meaning that the smallest of movements or exertions would drain her completely. Indeed, on a few occasions, the 10 metres between the bathroom and bedroom so thoroughly deprived her of vitality that she would collapse to the floor and need to rest there for 15 minutes before completing the journey. So she was very weary, very drained.

When I returned on Tuesday, the situation was markedly worse, as improbable as I felt that to be when I'd left. The short trip to the bathroom had become too strenuous in every occasion; she simply could not make it in one go even once. She was continuing to sleep more and more, and the night I arrived, she vomited three times, a frequency not seen for months. Furthermore, her sleep was more disturbed than I'd witnessed before; crying out, mumbling, twitching and trouble breathing dominated. She'd acquired a rattly, hollow sound to her breathing at times. The situation was as dire as I've witnessed, as bad as it was at the peak of treatment, but with no hope of a recovery this time.

Today was every bit as bad. Electra has not truly been awake all day. She had a few minutes of lucidity in the morning when the nurses visited (their visits are now daily rather than weekly). But other than that, she has slept fitfully, talking and crying out in nonsensical gibberish, sometimes trying to sit up or open her eyes, but much more often floating in a haze of medication, a failing body and eternal fatigue. Some of this may be due to the extra anti-anxiety pill she took this morning (to facilitate a procedure by the nurses). But more likely, it is yet another sign of her accelerating and inexorable decline. The end really is coming, and I think it's coming soon.

For my side of things, this has been a bit of a breaking point. Throughout these ordeals, I have continued to work, largely remotely (from Birmingham), though with frequent visits to my office. Lately, as Electra's condition has worsened, this has become harder and harder. My stress has gone up and my focus down. I lash out when I shouldn't and fail to stay on task when I should. As it is clear we are in the waning days of Electra's life, I have elected to take medical leave for the stress, and will likely continue to do so, through medical leave and vacation time-until the end of Electra's life and for some time after. I will spend my time here in Birmingham with her.

I should note again that my employer, Ericsson, truly has been exemplary throughout this 15-month trudge. From letting me work remotely, to allowing me to take annual leave with no notice, and always making sure that supporting me is their goal, they have made this whole thing much easier than it could have been. I discussed taking medical leave with my team lead on Monday, and he continued to reinforce the point that they would support whatever course of action I felt was best. At the time, I thought it would be to continue working for some time. This has turned out to be untenable and I don't want to claim to be working when I am in fact so far at the end of my tether that I am ultimately producing nothing; for this reason, I think stress-related medical leave is the right choice. It's great to have an employer who's got my back enough to support that choice.

Aside from the scariness and unpleasantness of Electra's current state, this sharp drop in quality of life further emphasises that rapidity with which the end is approaching. For the first time, I've managed to get a rough time estimate out of one of her medical care team. One of the hospice workers, visiting today, confirmed that my estimate of a week or two left is probably about right. A week or two. It's hard to see that written like that, and hard to imagine that in the next fortnight my world will become so much smaller.

Electra & AML: The End Slowly Approaches

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I think we are in the final days. This is weird to think, a scary and horrible realisation, and in many ways made worse by the fact that I've thought so before. When you know the end is coming, when fates have been sealed and results determined, there is a tendency to interpret signs as significant and portentous, whether they are or not. In this instance, though, it's hard to see any other conclusion beyond the idea that we are in the final days of this journey.

Even though the timeframe of Electra's decine couldn't be accurately forecast, the overall pattern was better understood. From when she was released from the hospital, we were to expect a gradual but consistent slide into greater and greater fatigue and lethargy. Eventually, sleep would overtake waking hours completely and Electra-though still alive-would be wandering in the purgatory of a coma, forever travelling outside the borders of the land of the living, but not yet crossed over to death. After a few days, possibly a week, the true end would arrive. We were also told to expect an acceleration of this slide in the waning days of consciousness; when things took a turn for the worse, it was likely they would get worse quite quickly.

Over the past few weeks, there has been more of a roller coaster ride than I would have expected given the prognosis described above. There have been good days, and lengthy periods of time when Electra's state has markedly and noticeably improved. Specifically, about a week ago, she visited the hospital and insisted on an audit of the medications she was prescribed. These medications numbered a dozen or so, many taken several times a day. The upshot was that Electra was constantly taking pills-approximately 30-40 tablets per day, which-given that taking fluids made her queasy and required a break-meant she would finish her morning meds just in time to start taking the lunch-time ones. Coupled with the side effects of this many meds, her medical regime alone caused her nausea and fatigue and brought her quality of life down. So a simplification of the medication regime to four key meds was a serious boon.

Adding to this was the prescription of a meal-replacement shake. Electra had been surviving for weeks on a daily diet of a half-cup of skimmed milk and, if she was really hungry, a few small slices of apple. This is not a combination conducive to high energy levels. But the prescription of Complan, a meal replacement shake, meant she perked up and even managed to eat some real food as her appetitive was ever-so-slightly piqued.

The final piece to her re-energising puzzle was the visit of her brother Philip, probably the final person on her "must see" list. I think Philip (her bone marrow donor) has taken this harder than almost anyone else, and he and Electra are very close; the absence was causing them both strife. But Philip's second child was born a scant few weeks ago and he was almost immediately hit with severe tonsillitis, so a visit had to be postponed. But being able to spend a week together and say goodbye properly, really brought some colour back to Electra's life.

So for some time, Electra's condition, which had been characterised by constant fatigue and sickness, seemed to perk up a little bit. The last few days, however, feel to me like the start (or resumption perhaps) of the downward trend we all knew was coming.

Electra has slept quite a lot since being discharged from the hospital. Cancer is draining, the medications can exacerbate this and the result is the classic picture of someone unable to truly rouse themselves. Naps have been a constant feature for weeks. But over the past week, Electra's sleeping has become the dominant feature of her day. She would previously stir by 10AM or so; the past days have seen a 1PM wakeup and a 5PM one. Even the smallest tasks take effort almost beyond her reach. She has very little left.

Part of this is by choice. Electra has made the choice to forego future blood transfusions. She will continue to receive platelets (at the hospice rather than the hospital) to attempt to stem the tide of the haemorraging. But the blood transfusions, which provide red blood cells (the key factor in one's energy level) will no longer be administered, at her request. This was an informed choice; the benefits of the blood would decrease over time, giving less of a boost with each transfusion, without realising a corresponding drop in the time, hassle or stress associated with the process-each unit of blood takes at least two hours of hospital/hospice time on top of the waiting, admin, paperwork and so forth. It is a trying procedure and the effect it provided was declining. So she has elected to stop future blood transfusions. This will of course hasten the inevitable.

I have long been an advocate of choosing when and how to die. I think that modern medical science is one of our greatest and most admirable triumphs. But the focus has always been on extending life, giving more time at all costs. We strive for-and often achieve-quantity time while forgetting about quality time. Electra has chosen the latter. She would rather we have a small amount of good time rather than a lengthy, trying and painful ordeal. I support her choice and I think she's doing exactly the right thing. I ache to see her in agony, discomfort or so utterly devoid of energy and enthusiasm. She's said her goodbyes and seen those she loves. She's ready and when the inevitable comes, she will have lived a great life and lived on her terms and by her choices.

I just wish we could've pulled off the miraculous and garnered both quality and quantity. I don't want her to suffer as she has been, but seeing her death approaching is almost immeasurably draining. The selfish part of me just wants to carve out another week or two. I'm not ready to start missing her yet.