Electra & AML: The Shells of Dreams

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

In one of my favourite movies of all time, the protagonist states that "Fear can keep you prisoner; hope can set you free". Throughout this ordeal, this basic precept is one to which I've tried desperately to adhere. We knew from the outset that this battle would be a protracted one, and without hope, it would be difficult to persevere. Cancer outcomes seem particularly affected by the patient's willingness to fight and their overall spirit, and the support structure surrounding the patient; to give up would be death and defeat and hope was the life raft to which we all clung. Even in the darkest days, we would cling to our hopes and dreams in an attempt to keep strong. But one of the worst aspects of this disease is the way it has, one by one, knocked down each dream we had.

First, it was the hope that the chemo would work on its own. Leukaemia was obviously serious, but we were assured time and again that the research had been excellent and the odds were much better than they'd been even five years ago. So we hoped chemo would kick this pernicious disease to the curb. That dream was dashed when Electra's genetic anomalies persisted. So, the total body irradiation and bone marrow transplant were scheduled, and our hopes were pinned on those. These were the nuclear option, and our dream was of complete remission and as speedy a recovery as possible. And for over six months, that's exactly what we had.

Then, the recurrence. Our dreams dashed again, we refocused, this time on the slim hope that the new chemo regime would cure her. Failing that, we wanted a period of calm, a window of health and well-being so that, if nothing else, we could at least travel one more time. See Rome or Bali, visit Montreal or New York State. We dreamed of a few good months together and the hope of a true cure. The cancer took that from us when the leukaemia came back almost immediately and Electra was officially terminal.

So the dream moves yet again. With the end now determined, we focused on the time leading up to it. Having been so miserable in the hospital, we wanted an easy couple of months for Electra. Peace, calm, a lack of pain and a comfortable transition at home. That's all we wanted. An easy an enjoyable end of days. But those hopes have been dashed.

Electra is largely pain-free, and that is a blessing. Although she experienced some pain early on as a result of a swollen vein in her leg, the pain management regimen they've got her on has that generally under control. But comfort and a general sense of well-being have proven much more elusive. Her nausea has come back in force, this time in response to any strong smells or tastes, or any sudden movements. Her energy levels have dropped dramatically, and she sleeps the majority of the day, either in short naps or full-blown sleeps. When awake, she has little energy and though the wheelchair we've gotten to get her around town helps immensely, she's often too drained to do much.

More frighteningly, she's started to haemorrhage. Though the full extent isn't really known, her lack of platelets has meant that she bleeds and bruises easily. This started with bleeding gums and nosebleeds that wouldn't stop. It has since expanded to a bleed behind her left eye rendering that eye mostly blind. It also leaves small red dots on her skin and darker patches in random locations. Whereas the plan was for her to receive a platelet transfusion of one unit each week, she has had to go into the hospital three times in the past week, and has received two units each time. The dream of an at-home convalescence has become a reality of three or more hospital trips per week, sometimes lasting more than six hours.

I said in my last post that some of these symptoms-though not huge on their own-are harbingers of what to come. I'm more convinced of that than ever. Though we've never been able to predict how much time is left, I'm less confident now than I've ever been before. Electra has had time to recover from the busy week I discussed in my last post and yet remains weak and tired. She is bleeding and nauseous and often uncomfortable. Our final hope, the dream we so desperately grasped for seems as futile as all the rest. All we wanted in the end was a little more time and to see Electra comfortable and at ease. It seems cancer could not even grant us that. Fuck cancer.