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.

Electra & AML: Ups and Downs

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

Apologies for the gap in posting. As you can no doubt imagine, the news of the recurrence and the prognosis was a bit of shock, even though we knew Electra's odds weren't great going into this round of chemo. Although I think we're handling it well overall, I know that I've found it very hard to concentrate on much of anything of any substance and blogging falls into that domain and has thus been neglected. Allow me to bring everyone up to date.

We are now more than three weeks post-diagnosis. It's been a tumultuous and emotional ride. Hearing you are going to die (or that a loved one is) is one of those things you're never really prepared for and to which the reaction is anything but predictable. From Electra's initial re-diagnosis in December, we knew the odds against success were pretty grim (5-10%). But it is something for which one really cannot prepare oneself, as much as we tried. When there is even a glimmer of hope, that hope is a raft in an icy storm and a light on the horizon and you hold onto it with everything you've got. So while we were realistic about the odds, we also clung to the dream that she would beat them. Beyond that, we'd hoped for more time. The chance to travel a bit, the chance to enjoy a little more life. It's clear now that this won't happen and that was more shocking than anything else.

In the intervening time, we have kept busy. Aside from the hospital, hospice and GP visits to ensure that Electra's care is handled as well as possible and that she's kept comfortable and pain-free, there has been a steady stream of well-wishers and visitors. When the diagnosis was given, Electra decided to host a small gathering to celebrate her life and say farewell to a few close friends and family. It was small and intimate, but an excellent idea. By framing it as a celebration of life, Electra was able to ensure that the mood was as upbeat as possible, that people could say goodbye without feeling overwhelmed and that what will be the final farewell for many brought with it some positive thoughts and memories.

In addition to this party, Electra's cousin and aunt have been visiting for ten days or so, and my parents for the last week. This was ultimately a bit of a mixed bag. While the visits were low-key and often involved a lot of sitting and chatting, it dramatically increased the number of people who were present on a daily basis, and this brought a degree of stress into Electra's days that should possibly have been avoided. She was a trooper for all of it though, so even when the stress was high, she persevered. We got her a wheelchair, which has allowed her to get out of the house sometimes, as she would often have the energy to be out but not to walk there and back. Through dinners out and days in, she always did her best to engage with all of us. This was tough at times, however, especially so later in this past week.

Which brings me to the question at the fore of everyone's mind: how is she doing. Unfortunately, the answer is "not great at the moment". Electra got a platelet transfusion on Monday and three units of blood on Tuesday, and the effect was immense. Her colour got better, bumps and bruises and cuts healed and her energy and spirits jumped dramatically. Though she would still tire readily, she really didn't look terribly sick. As the week progressed, however, that got steadily worse in pretty much every metric. When I left on Sunday, she had been asleep most of the day, had little to no energy when awake, was pale and sallow, was getting spots and bruises as a result of her dwindling platelet count, and was bleeding from her gums (again because of the platelets). In short, she seemed as sick as she really is.

This is scary to me and really drives home the reality of the situation in a way that a logical and cogent understanding cannot. Even for someone as bound to scientific fact as myself, this felt more surreal than real at times and seeing Electra moderately hale and hearty made it easy to put aside the reality of the situation. But this weekend changed that. Although the spots on her skin are minor, they herald the somber reality of what to come. Though seemingly innocuous on their own, they are the harbingers of her inevitable future.

I don't know whether Electra's deteriorated condition is a result of an intense week of friends, family, food and chat, or whether this is the first major step on the inevitable path to the end. She will receive platelets on Monday and will have her blood tested, possibly (likely in my view) triggering a transfusion of blood to boost her haemoglobin count, and thus her energy. And this will be very telling, I think. With a couple good days of rest and a transfusion of blood and platelets, hopefully she will pick up and show us that the past week was one of over-exertion. But I'm worried that the end of days is approaching; I worry that the energy loss and other symptoms are all that is left to expect and that the efficacy of these measures will ever dwindle going forward.

I worry I am losing my love. And I've never been more powerless.

Electra & AML: The News We Dreaded

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

I am afraid I must be the bearer of bad news in this post. Although the risks and potential outcomes of this disease have always been scary, and the recent prognosis has been especially dire, we always held out hope that we could beat the odds. Sadly, this is no longer the case.

Electra had a bone marrow biopsy this past Monday. This was to check on progress and while this would have occurred anyway in the course of treatment, it was especially important in this instance because Electra wasn't seeing the recovery speed that would be hoped for. At three weeks post-chemo, one would hope to see her immune system coming back in force, an end to the daily nausea and fatigue and her blood levels returning to normal. While the growth hormone (GCSF) had boosted her levels, they had fallen again. So the biopsy was ordered and was performed on Monday.

In a bone marrow biopsy, there are two types of samples: the aspirate and the trephine samples. The aspirate is the liquid goop inside the pelvic bone; the trephine is an actual cross-section of bone. Getting enough aspirate for a definitive sample is often difficult for patients who recently undertook chemotherapy, which is why the trephine is taken as well; however, the trephine sample takes a week to analyse, compared to a day or so for the aspirate. In Electra's case, they were able to get enough aspirate and a long section extracted from the bone which was smeared on a slide for further analysis. Between this smear and the aspirate, a definitive diagnosis was reached in a day, so we knew by Tuesday afternoon.

The diagnosis wasn't good. The sample was full of leukaemia cells; the cancer was very much still present. The FLAG chemo and DLI, for all its intensity, had failed to eradicate the disease. Although we haven't gotten the cytogenetics back, this indicates that the bone marrow tissue is Electra's, and that it would ultimately dominate the cellular growth. The chemo hadn't worked.

Those who have been reading my blog over the past weeks and months know what this truly means. This was our last chance. This was the only remaining option; our hail mary pass to try and beat this thing for once and for all. So now, there's nothing left to try. All the options are exhausted, all the hope dissolved. All that is left to Electra now is palliative care. This is the medical term for "waiting to die". We don't know how long this will be: it could be a few weeks or a few months, but the outcome is no longer uncertain.

At least, though, Electra has been able to leave the hospital. Although she is still neutrapenic and thus at risk of infection, there is no longer really much to be gained by maintaining a hospital residence. She has little enough time left that anything they could do would make only a small difference and would guarantee she didn't enjoy the time. Instead, we will try to live as much as we can for however long we have left. We will eat, live, love and try to enjoy everything we can until the inevitable end arrives (not only Electra and I, but her parents as well, both of whom are here in Birmingham). The other small victory is that the end will arrive largely pain-free and in relative comfort and what pain there is can be treated with pain killers. Electra will simply become more and more sleepy until one day she will painlessly slip into a coma. From there, we will have only a couple of days to say our last goodbyes and make our last peace.

I have to be honest: I don't know what to write here. I've been asked countless times over the course of this ordeal how I felt, and this hasn't exactly abated with the realisation that Electra, the girl I love so deeply, the most important part of my life for over three years, is going to die. And if I am at all honest in response, I have to admit that I don't know how I feel. How can I? I mean, I can spin it out for people, talk about how unfair it all is, how gutted and shocked I am, etc. But the reality? There is so much bouncing around in my head right now that I can't really nail down my feelings, and if I could, I don't know that I could put it into words.

To start with, this isn't really unexpected, but neither was it predicted. Leukaemia isn't as unbeatable as it was a few years ago, but neither is it a walk in the park; moreover, we've known since December that her odds this time around were highly unfavourable. So we've had time to prepare, both practically and emotionally. But whenever there is any hope, any chance that a cure might be attained, you hold onto that hope, at least to some extent. You have to, because to give up is suicide. But now that ever-faint glimmer has finally flickered to gloom. So I do feel defeated.

But of course, there's more than that. Some of it obvious. I regret where I didn't treat Electra as well as I should have. I regret the time we spent apart and that we never managed to live together. I regret that we never travelled to the places we dreamed of, that we never got to adopt our puppies (Gaius and Caprica) nor our kittens (Shockley and Bardeen). I regret that I never saw her parents' summer home that provided so many great memories for Electra and that she never got to introduce me to her favourite Montreal haunts and restaurants.

And I guess that's what strikes me the most of this. The empty spot in my future, the blind patch in my dreams. I lament what we never did, more than what we did wrong, for it is missed and unfulfilled potential.

But beyond that, I don't know how to feel. It may be that I'm avoiding my emotions or that I lack the facilities to really grasp them. It may be that this is just too big to take in all at once. I bury myself in the facts and numbers, in the prognostications and planning. And I've realised that this is my way of avoidance. Paradoxically, by focusing on the reality of the situation and accepting what is to come, it may be that I'm avoiding actually internalising it. All I know is that a huge part of my life is about to go missing and I can't honestly say how I will feel when that happens. And that's a little scary.