Electra & AML: Our New Years Eve Tradition

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

So, remember my last post? Where I discussed why it was so important to us to celebrate New Years Eve in style and the plans we had to do so? Well, turns out that was optimistic thinking and our continuing streak of bad luck had other plans in mind. For the second year in a row, Electra started chemotherapy on New Years Eve. Evidently this is now our traditional celebration.

Basically, we'd been given the conditional all-clear to celebrate NYE as we'd planned, as Electra's counts were high enough. The condition, however, was the she come in for one final blood test on Wednesday, December 28th and that this test would be the final decision-maker as to whether she was healthy enough to stay out of the hospital until the new year. And sadly, she was not; specifically, her white cell count had dropped further, which put her at an increased risk of infection. If she were to contract an infection, the course of chemo she'd selected would be impossible: since the chemo would decimate her immune system, any contracted infection would potentially be fatal, and would definitely be a horrible experience. So they would be unable to start the chemo if she were to pick up so much as a nasty cold, and the risk of doing so was too high. So New Years Eve as planned was off, and it was into the hospital the next day.

Of course, that didn't happen either. The hospital was short on beds, so her admission date got bumped back to the 30th (despite the fact that I'd treated us to a nice "last night out" dinner on the 28th, harrumph).  On the 30th, she was admitted back into the haematology ward, and the treatment began. First step was the insert a new Hickman (aka central) line, as hers had been removed when she'd been in remission. Then came the application of GCSF, a growth hormone which in patients such as herself spurs the production of more white cells, better enabling the body to handle the coming onslaught of the chemotherapy. This had the added benefit of taking her out of a neutrapenic state, meaning she felt healthier (for awhile) and the precautions for visiting are lessened.

On the 31st, the chemotherapy began. The course she's now on is called FLAG and has two chemotherapy drug: fludarabine and cytarabine. The latter is given over four hours, the longest single-drug duration she's had to deal with.

The upshot of all this, of course, was another New Years Eve in the hospital. As you can imagine, we were gutted to hear the news, as we'd really been looking forward to a nice, fun, relaxing cottage weekend with close friends, games, drink and sleep. Instead it was sterile environments, crappy hospital food, pain and intense medication.

Still, these sorts of things are, to a certain degree, what you make of them. So we did our best. I brought in a bottle of sparkling wine and a black forest cake and we rang in the new year (two hours early due to fatigue) with bubbly, cake, music and even a little in-room dancing. It might not be what we'd planned, but it was the best we were able to make of it.

And here's to 2012 being a better year, with a proper end-of-year celebration!

Electra & AML: Christmas update

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

A minor, but very vital part of Electra's recent re-diagnosis was the question of New Years Eve. Specifically, the timing of the recommencement of the treatment. As her relapse only occurred (or at least was identified) in the middle of December, the doctor informed us that she would need to start treatment either early in the new year, or in-between Christmas and New Year. We dearly hoped for the first option, an early January start. This, however, would depend on her blood levels; if her white cell count stayed high, she could start in the new year. Were it to drop, she would have to check into the hospital shortly after Christmas and begin treatment. At the risk of giving away spoilers, we were thrilled to be told that we should be able to make it to New Years Eve (pending a final check this coming Wednesday to ensure all was OK).

To some, this may seem strange. Indeed, when describing it to one of my closest friends, he quite reasonably asked why we wouldn't start immediately, regardless of the results of the blood work. You see, the efficacy of the treatment is increased when it is administered earlier. As chemotherapy is targeted to attack cancerous cells (with the healthy ones taking a hit as collateral damage), the greater the concentration of "bad" cells, the greater the force standing in opposition to the treatment, and the less effective it is liable to be. As is the case with most cancers, early detection and treatment can often have a profound effect. So why not start the minute the diagnosis is reached?

The reason is life. Not surviving, not just getting through, but life. We want as much life as we can possibly ring out of whatever time is left. Although we are obviously trying to maximise the quantity of available time, more importantly perhaps is trying to maximise the quality. When things are at their very darkest and it becomes increasingly harder to see in front of you, even the dimmest, most flickering light becomes a beacon, something to strive for and dream of. A flame in the dark is the very essence of guidance and hope. So each victory, each bit of enjoyment, each "win"… they matter. More than they ever have before.

The terrifying, horrible reality is that there is now a very real chance we may not get to spend next Christmas and New Years together. Though we were together last New Years Eve, Electra was diagnosed at 2:00 PM and connected to chemotherapy at 7:00. We did not truly have a New Years Eve. So, dammit, we will do so this year.

Fighting cancer is a siege, not a lightning war. The process is long, draining, and demoralising and is won not through pitched battles and intense triumphs, but through inches. When full victories are won, they come on the back of a hard-fought slog, digging through the deepest trenches of human physiology to stand upon the pinnacle of health and well-being, glorious victories celebrated all the more for the exhaustive battle of wills required to achieve them.

And in a years-long battle of inches, every win matters. We celebrate when the blood counts go up, we celebrate when the need for antibiotics goes down. A bit more energy or a bit less of a cough. A reduced temperature or an increased stamina. Every victory counts. And every victory, no matter how small, is treasured. And that treasure keeps you going.

New Years Eve is often overblown in importance. Ultimately, it marks the passing of a single day as much as it does a full year. But our traditions and customs define-to a very large extent-our priorities and our core values. And New Years Eve is therefore more portentous than other days. It is a chance to reflect on the past year and prepare for the next, to right the wrongs and further improve the rights. So we celebrate. We celebrate with friends; we celebrate with family; we celebrate with loved ones, and with love itself. So New Years Eve matters.

December 31st, 2011 will very hopefully see Electra and I celebrating the coming of 2012 with a group of close friends in a small cottage in the south of England. We will drink, we will eat, we will sing and talk and hug and love and be merry. The new year will bring tougher battles and more brutal fights, but those are for another day. For one night, for one glorious, celebratory, joyous evening, we will be as we were before cancer and before chemotherapy: hopeful, uncomplicated and revelling in all that this wonderful, flawed, beautiful world has to offer. That matters, because that is living. And we will live.

My first Christmas away from home

Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice.

- Dave Barry

This year has presented many firsts for me, but one quite recently-my first Christmas away from home. It was an interesting experience, and lead to some realizations about myself, and about tradition, and about home.

As many of you reading this blog might remember, I was home in November for about ten days. In addition, I'm contemplating going home for an entire month in late spring (I have one friend getting married at the end of May and a pair of friends getting married at the end of June). Given both these things, it simply made no sense for me to go home for Christmas-I lacked both the time and the money.

I should stop for a moment here and clarify what Christmas means to me. You see, I grew up in a non-religious household, so Christmas doesn't have that "birth of our Lord" feeling that it does for many. But the lack of religious/spiritual significance is not meant to underscore a lack of importance. For me, Christmas was a time of tradition, a time of family. It was the time when-as clichéd as I know this will sound-the rest of life just slowed down so I could be with those people who matter the most. So, it's quite a strange feeling to miss out on that togetherness.

In the end, I spent the time in-between Christmas and New Years with three of my friends' families. Jon offered to take me in for Christmas itself, something I gratefully accepted. So, I went down to his from the 24th-26th. His parents own a pub, which was open Christmas Eve day and Boxing Day, plus Christmas day until dinner time. I had a lovely Christmas dinner with his family and friends, played some quiz games and got far drunker than I'd intended to on Christmas Day. Partly Jon's fault-drinking games should never be invented and implemented on days when I'd intended to stay sober. Still, it was a great time, and I'm eminently grateful to his family for making me feel so welcome on Christmas. My parents also called me on the day, so I was able to at least speak with them on Christmas, which was nice.

On the 26th, Jon and I drove up to Richard's parents' new place, where we met up with Siv and Christian. This new place is absolutely stunning. Though located in the exact geographic middle of nowhere, it is a truly expansive, opulent estate situated on lovely rolling hills and very picturesque forests. The house itself has wonderful high ceilings, many bed and bathrooms, and is just all-around a wonderful stately home. We five friends, along with Richard's parents, had a lovely dinner and then Christian departed. Siv, Jon, and I spent the night then we, plus Richard played with his dog and ran around the huge yard, generally acting like silly children. It was great.

I was back in Manchester for the evening of the 27th, then off to Jim's on the 28th. I was able to get some long-overdue boxing-week shopping done on the morning of the 28th, which is nice because I now own clothes that fit properly (as a result of losing some weight, many of my clothes were ridiculously large). At Jim's, we basically just chilled. Played some Mario Kart, pool and Darts, he taught me some of the basics of poker, which I then implemented in a mini-tournament with him and some of his friends (coming second out of the six of us and won £10), and we played his Star Trek 3D chess set, which was deliciously nerdy. I lost.

I was back in Manchester on the 30th, and went to Fairfield Hall, where I lived last year, for New Years. They do a free party every year, with an open bar. It was fun and sloppy, but otherwise unremarkable. I'm glad I did that, though-I've never understood the point of clubbing on New Years-you pay 5 times as much as a normal night for a night of clubbing that's largely undifferentiable from any other club night. Why bother? House party with friends, or small party with a free open bar is the way to go.

So now, as is my wont, let me delve briefly into the philosophical. Because, being away from my family this Christmas brought an interesting issue to the surface for me: the idea of "home". Because you see, something strange happened to me while I was in undergrad: I lost the concept of feeling "at home". I'd grown up in the thriving metropolis of Dundas, and archetypal small-town North American suburb if ever there was one, and it always felt like home when I was growing up. I knew people, I knew the area, I felt... comfortable. But after a few years in Guelph for uni, Dundas wasn't really home any more. I'd be there for the odd weekend, but it felt more and more like I was visiting. And while Guelph was where I lived, and felt like it was my place, it never captured that essence of "home" that Dundas had had. This is partly because I moved a lot-in my five years in uni, I lived in no less than nine different houses, and while I was comfortable in many of them, they never captured that quintessential feeling of being home.

George Carlin, the preeminent American comic, draws the distinction between a house and a home when he speaks of the homeless. He says, quite rightly, that the problem such people have isn't their lack of a home; it's the lack of a house. They need a roof over their heads more than anything. But this is the bare minimum. This distinction belies the importance we place on our sense of belonging, and it is this sense that ultimately makes a home. If, as the cliché says, home is where the heart is, it is because our sense of who we are relies partly on our being at peace with ourselves, and with our surroundings. And no set of surroundings is more intimate than that which we call our home. Our home is an extension of who we are-it reflects our values; our strengths and failings; our desires and realities.

Nowhere is the absence of home more self-evident than student halls. I lived in halls again last year, simply because it was much easier to arrange a hall of residence from Canada, than a private house. But I hate living in halls. Aside from the mess, the noise and the condescending housing office, halls scream "temporary". You can never really call a hall a home, because it will always be crystal clear that you're just staying there. It's one rung above a hotel room in its ephemeralness-it will never be "your" place, it's just where you stay for awhile. Where I live now is a great flat (muggings and break-ins aside), but it still doesn't feel like my home. It is on par with anywhere I've lived since I started uni, but no better.

I miss the feeling of being home. Manchester feels to me like "my city" now, in the way that Dundas did, and then Guelph. By this I mean, I feel comfortable in the city, I know my way around the main areas, I know people (and have random bump-ins with people I know). But that ethereal concept of "home" is still missing. I don't know what is missing that would complete the picture and provide that elusive feeling, but I hope I find it.

Don't get me wrong-I love where I live, both the city and my flat itself. I love Manchester, I love my friends, and I'm having a great time. I just look forward, with eager anticipation, to the day that I can truly feel that I'm home again.

Home is not where you live but where they understand you.

- Christian Morgenstern