Electra & AML: The Reality of What's To Come

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

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:

1. Do nothing
2. Palliative care
3. Azacitidine with DLI (donor leukocyte infusion)
4. 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.

Electra & AML: The fear factor

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


So, one of the biggest things with cancer of any kind is the fear. And I've been thinking about this a lot since we got the diagnosis. Am I scared? Should I be scared? What about Electra? Should she be? And in the end, I don't know. As weird as it sounds, I can't tell if I'm scared or not.

On the one hand, I'm a numbers guy, bound by logic and science. And the numbers, so far as I can gather, are promising. Electra has a lot in her favour: she's young and generally healthy. She's got good support (including yours truly) and the hospital seems really on top of their game. Her parents have sought some outside advice from a friend-of-a-cousin who happens to be a bone marrow specialist at the Mayo clinic who says the treatment she's on is good and generally pretty effective. So overall, I am confident that she'll get through this.

But there are times when it can be hard to see. Electra seems to react quite poorly to one of the chemotherapy drugs, called atopside. This is administered once per day for the first five days of her treatment, and every time she's gotten it (she's just completed day six now), she gets dizzy and nauseous, sometimes even weak and cold (like yesterday). When this happens, it can be scary. Because it's one thing to know that the numbers are on your side, it's quite another to see the one you love shaking from the cold in a very warm room as the walls spin around her.

It's like any other semi-irrational fear. For example, there are a great many people living in Canada or the UK who are afraid of snakes. Now, there are no poisonous snakes in either country, but that fear is imprinted on our brains and it can take hold, logic be damned. But the thing to do is accept that your body feels the fear but you control your reactions. I saw a World War Two show on TV once where a soldier who'd fought in D-Day said that courage isn't not being afraid, it's being afraid but doing what you have to do anyway.

So am I scared? Maybe a little. But the doctors aren't and that gives me hope. The trends back up my confidence-AML is beatable and she has a lot working for her. So when the bad times hit and she seems frail and weakened… well, that's just when it's time to steel my nerves and remember the reality: things are OK. There will be good days and bad, high energy and low. This is part of the process and she will get through it. We will get through it. Scared or not, we will push once more into that breech dear friends.

Why we take risks

"I haven't failed; I've found 10,000 ways that don't work."

-Thomas Edison

Growth. It's a hard thing to pin down, how we change, adapt, and grow. It's a process that happens organically; one over which we have no direct control. We develop in ways we never would have predicted and could never have directed. It is a combination of who we are, and the experiences we encounter that change us; while we cannot change how those experiences will alter who we are, we do have some control over which experiences we encounter.

Every day we are presented with choices; every day we are presented with risks. And with every risk comes a gut reaction. Our instincts leads us in one direction. But just as we no longer rely on a purely "fight or flight" instinct to decide on the best course of action in every scenario, neither can we delegate to our gut reactions every daily decision, every risk-taking.

Just like fear, risk is good, but often scary. A lot of the time, we let our fear make our decisions for us; we avoid risk, because we're too scared of the outcome to take chances. But, as with fear, it would often be to our advantage to take more risks. Because we learn from each experience, whether or not it achieves the goals we'd hoped for. To paraphrase Robert Frost, when we take the road less traveled, we are all the better for it. Because we have a width and depth of experiences unparalleled by those who choose safety by default.

Our experiences are a map from who we were to who we are and will be; we are the people that our experiences have made us into. And with a richer mosaic of experiences, we become more-developed, more-diverse people. We cannot learn about ourselves and our world without experiencing many things; more specifically, we cannot grow without experiencing some failure, some disappointment.

We will often shy away from risk for fear of being hurt. This is doubly true with emotional risk, as it is those cuts which go deepest. But the irony is that it is those experiences that most augment ourselves, making us into better, stronger people. It is all too easy to shut out everything new, everything we "think" we don't like; it's much harder to try something we have convinced ourselves we won't like and see what happens. It seems counterintuitive that getting hurt can make you stronger, that failing can make you more likely to succeed in the future; but this is the very nature of personal growth.

I should clarify by saying that not every risk should be taken. Jumping out of an airplane without a parachute, while undoubtedly an eye-opening experience, is a risk with very significant downsides and little benefit. But when an opportunity presents itself that we find ourselves greeting with apprehension, it is important to consider that this might just be one of those risks that we need to lead us down the path of enlightenment and improvement. And those are the risks we should always take. Because without it, we will never grow, and will forever live in the shadow of what might have been, had we merely had the force of will to try. When we try new things, we never wonder "what if", because we already know the answer.

"Twenty years from now you will be more disappointed by the things you didn't do than by the ones you did. So throw off the bowlines, sail away from the safe harbour. Catch the trade winds in your sails. Explore. Dream."

-Mark Twain

Fear

"The only thing we have to fear, is fear itself"

-Franklin D. Roosevelt (1st Inaugural Address)

I'm still jumpy. I jump at shadows, I'm nervous of people walking behind me. Two days ago, I almost took a swing at a jogger who came up behind me suddenly. Twice a day I walk through the park near my house, and it puts me on edge every time. But I do it, and I'm going to keep doing it.

Almost everyone knows the Roosevelt quotation at the top of this post, though it's often paraphrased as "There is nothing to fear but fear itself". Roosevelt was saying that we must not let our fears dominate us; that what we fear is often invented, exaggerated or simply not deserving of such fear. In the context of his first inauguration in 1933, it was meant to be a rallying cry-to encourage Americans, and indeed the world, to be strong in the face of depression, the rise in European fascism, and the unflinchingly bleak times that seemed to face the nation and the world. But I think it alludes to something even deeper than that. I think it means that you only fear what you choose to let yourself fear.

This is counterintuitive. Fear is a strong emotion, and it grips us at unexpected times, and seems to wrest control from our rationality. But we can control it, and we must control it. If you are afraid of heights, you should go to the observation level of the tallest building and peer out over the city below. Because we allow ourselves to fear things we shouldn't. And fear is strong-if we don't actively choose to not be scared, we will be forever mired in that fear. And it will rule us.

Even more counterintuitive: fear is good. Fear tells us when we're about to do something stupid. Ultimately it was our ancestors who were scared of sabretooth tigers who lived long enough to produce offspring, leading to ourselves. So, we need fear. But we need to allow fear to do its job, without it keeping us from doing ours. Some things we should be scared of (sabretooth tigers, for example). But some fears are merely the by-product of an irrational response to that which we feel we are unable to control, or that which is unknown, or poorly understood. A healthy respect for heights is good-it keeps you from jumping off roofs like Keanu Reeves in The Matrix. But there is no reason to be scared of the height when you are safely ensconced in the interior of a skyscraper-you are not going to fall and that fear will limit what you can do. Similarly, a fear of snakes and spiders is quite rational in the Amazon, where poisonous varieties of both abound. In Britain or Canada, the fear is irrational, and simply a result of the "fight or flight" mechanism hard-coded into our brains.

Fight or flight, as alluded to above, allowed our ancestors to survive. It was instinctual-you just react. When you're confronted with a sabretooth tiger or a cobra, you don't have time to think-just flee. That's how you survived. But we're better than that now. We have moved past the need to be controlled on instincts; every day we forego what our animal brain tells us in favour of doing the right thing, the logical thing; we make rational choices based on the available information, beyond what our subconscious instructs us to do. Yet, too often, we yield to fear.

I'll say it again: we only fear those things we choose to let ourselves fear. You can confront your fears, and you should-it is this process that lets us live our lives devoid of irrational panic and fear. Because we've all seen what crippling fear can do to a society. We see it every day in the guise of the "War On Terror". The War on Terror is an excellent tool for control, by both sides. Those that employ tactics of terror do so because a society living in abject fear cannot function, and there is little that is more disruptive to our lives. So, attacks are made in just the right way-public places, hidden weapons, something that could "get" you, rather than attacking soldiers, who know and accept the risk. And the government is complicit in this. Whether it's a colour-coded "How scared should I be?" system, or constant talk of poorly-defined, nebulous "evil-doers", the fear that is perpetuated ensures that the government is relieved of their greatest responsibility-the stewardship of the countries they lead. When people fear for their lives at the hands of a bearded spook, taxes, scandals and corruption seem less important. Nothing is more revelatory than the phrase "If we ......., the terrorists win" (whatever the ..... represents). Because every time that phrase is uttered, the terrorists have won; because we're talking about them, we're thinking about them, and we're scared of them. The only way to truly "win" is to continue on as if nothing has changed-to choose to not fear.

More often, though, the fear is more subtle. It's a fear of being hurt, physically, emotionally or spiritually. We've been hurt in the past, and rather than confront that pain, we just avoid the situation that put us there. But nothing worth doing ever came easily. You don't learn to ride a bike without falling and hurting yourself. But when you fall, you get back up, dust yourself off, and try again. And you learn. Learn what you did wrong, correct those errors, and try again.

I have learned that I can't listen to my iPod while alone, at night, in dangerous areas. It was an expensive lesson, but one which will make me better equipped for my continued life in a big city like Manchester. But I will not change where I walk-I could avoid the park, I could avoid the subway under the highway that's so often full of undesirable elements of society-it wouldn't even add that much time to my trip home. But I won't. Because I will not let them win. I will choose to not be scared-the jumpiness will pass. You cannot live without risk-to do so is to obviate everything that makes us human; it is suicide. Fear is good, but only when you're in control. Take risks, learn from your mistakes, but above and beyond anything else, get up, dust yourself off, and try again. Own your fear.

Security is mostly a superstition. It does not exist in nature, nor do the children of men as a whole experience it. Avoiding danger is not safer in the long run than outright exposure. Life is either a daring adventure, or nothing.

-Helen Keller