Electra & AML: The End Slowly Approaches

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

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.