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I’m one of the people who is going to die

I’m one of the people who is going to die

Is it true that we don’t really believe we’re going to die? We know in our heads that we will, but do we entirely believe it? I think we don’t. I think there’s a part of us that somehow believes that we won’t ever die, if only because contemplating that reality is so unpleasant and counterproductive that it’s easier to put it out of your mind altogether. It’s that thing that will happen (presumably), but it’s best to create a life based on the presumption that it won’t. And then once in a while you have a brush with death, a reminder: a car nearly swerves into you, you stare down from the 44th floor at the street from a balcony, the turbulence on the plane gets a little too turbulent, and you think, I could die right now. It’s terrifying and disturbing.

I had cancer and recovered (so far). The kind of cancer I had is entirely curable 98% of the time, and deaths from it are extremely rare and involve decades without proper medical care or the detonation of nuclear bombs nearby. I was never in the position where my life was in serious danger. Of course the moment the words “cancer” or “carcinoma” get bandied about during your doctor visit, the fear kicks in and it’s like your life goes into constant turbulence on descent. You are convinced that you will die, and you are right. You will. Not of this, but you will. How is it such a surprise? A rude surprise. Extraordinarily unwelcome.

There’s an element of trust that’s part of it; when your computer crashes or makes a sick sound for the first time, you start to trust it less. Personally, I start to mourn it a little bit. I thought it was perfect, but now it’s demonstrated that its not, it’s on its way down. I’ve started on the path to replacing it. Every time it restarts you have a question in the back of your head about whether it will or won’t. It’s proven itself to be unsound (sometimes). I will start to see it that way.

This is the same process that happens with your body. It’s one thing if you don’t like to run, your feet get sore when you stand around for hours on end, you get tired after a couple pints of beer. But when something serious goes wrong, when your body proves to you that it’s capable of aiding and abetting carcinoma, you trust it less. It’s on the path to the grave, and you can see it now. Can I take a breath and get to the end of this sentence? Or will I run out of air? No longer able to know for sure the limits of your own body, there’s the mourning of that youthful exuberance, that certainty that you know precisely what you can do. As if that means you can do nothing at all.

As with a piece of technology, you get over these fears as your body demonstrates that its recovered. You learn to forgive it for allowing something deadly to grow. You put it in context, blame the environment, extraordinary stresses, consider the ways your body protected itself, closed off the deadliest stuff. You come to terms. If you’re like me, and you had a cancer no one ever took seriously as a threat to your life or lifestyle, you don’t even get an oncologist. You’re on the lowest rung of the cancer ladder, so low it’s a wonder they even use the same word. You don’t warrant special treatment ever after. You’re back in with the regular public for everything; care, percentage chance of getting (another) cancer, potential lifespan. With time, you even see yourself that way. Average. Ordinary. Invincible, just like everyone else.

But that’s not how others see me, I understand now. Tarred with the cancer brush, I see that for others I’m a person who’s going to die, unlike them. I’m in the category of people who will die. Not today, but one day. I’ve demonstrated my ability to foster and support death, like a computer with a history of kernel failures. We know that one is going to need to go to the e-waste trash pile, it will one day crash and not come back.

I suppose it’s evidence of a) the crucial place of optimism in our daily lives. I understand that we need to hope for the best, I guess it hadn’t occurred to me until I got sick just how critical that hope is. If you know you’re going to die in 5, 10, 40 years precisely, would you live your life differently? Would you throw caution to the wind, feel freed from the shackles of not knowing, or would you mourn the reality of it? I think mostly we fall into the second camp, mourning the bare fact. But the reality is, your computer is going to collapse eventually, and you’ll have to replace it. You will die someday. It might be this afternoon while walking across the street, next week on an international flight, in two months from now of a spontaneous aneurysm, or flesh-eating bacteria, or new strain of flu. The only difference in this regard between us (the currently healthy) and those in hospice is the knowledge of what is going to kill us. Not when, and certainly not if.

Cancerland at Relay for Life in Second Life

Cancerland at Relay for Life in Second Life

[youtube http://www.youtube.com/watch?v=FOyOQqjylmQ&hl=en&fs=1&]

I suspect this is the last iteration of Cancerland, since I don’t think the land its sitting on will be around too much longer. So I really went to town with it. Building it and sharing it has been a great experience.

Cancerland Video, version two

Cancerland Video, version two

[youtube http://www.youtube.com/watch?v=r2HQGxbNMNY&hl=en&fs=1]

Everyone I know has already seen the first video, but after watching it myself a few times, I realized what pieces were missing from the build itself. To start: why didn’t I put labels on the spaces? I had names for the pieces, like the hall of terror and the scar display room, so why don’t I put proper labels on things? I also stopped making good use of audio after a certain point in the build. I didn’t want to be a one-trick pony, but I think the audio is very effective. So I added some more. I added some more interactive pieces into my office recreation too.

It’s all a big learning process, that’s for sure. Building something like this isn’t exactly instinctual, that’s for sure, even though I think it’s hitting on some very basic communication methods.

On a tangiential note: I love youtube’s high res options. You can actually read the narrative text through it. Awesome.

Cancerland

Cancerland

I finally managed to get a video of Cancerland. This way you can get a sense of how the audio fits in with the visual. The text remains a mystery in this format, unfortunately. I’ll have to find some other way to get that information across. The narrative is really held together by the text.

[youtube http://www.youtube.com/watch?v=Y1LofBXx9PY&hl=en&fs=1]

Scar update

Scar update

Someone asked, so I took a picture of my thyroidectomy scar today. For reference, here’s a short history of my scar:

18-02-08_2231
one week post surgery (mid-February, 2008)

06-03-08_1155
two weeks post surgery (end of February, 2008)

Photo 12
about four weeks post surgery (early March, 2008)

Photo 50
about a week post radiation (mid-March, 2008)

Photo 67
today

For those who are curious, and for those facing this exact surgery. The body takes it’s time to heal. This is how one learns to be patient, I suppose. It heals at its own rate, and it probably takes a full year or more before you get to see what it will look like as a permanent scar. Even then, I wonder; there are lots of products you can put on scars these days. I put vitamin e on mine during the day, and zinc (diaper rash cream, yes indeed) on it during the night.

When do you become a Survivor?

When do you become a Survivor?

In the SL cancer survivors group meeting today, a friend raised the question of the definition of the term “survivor”. For most of us, we understood it as being a person who has gone into remission. But that’s not the definition they use. (And by “they” I think I mean the American Cancer Society.) To them, you become a survivor the moment you get your diagnosis.

We debated that. I understand wanting to use the term that way, to help people stay out of victimhood. (Though: sometimes you really are a victim. Do we use the world “survivor” to obscure this fact? Is it healthy to obscure it?) The leader of the group is a fan of this method, and I’m sympathetic to her motives. Who wants to tell someone that they’re a victim right now, but one day soon they’re going to move into the role of survivor? (Now that I think of it, that doesn’t sound all that bad at all.) We discussed the concept at some length. Many of us had moments where we felt we moved into survivorship; for some, you become a survivor the moment you decide to fight back. The youngest of us in the group (aged 26, stage 4 lymphoma, currently in remission) says he decided to fight back a second after he got the diagnosis.

I didn’t. For the first few weeks I felt that my incision belonged to my surgeon. I wasn’t a “survivor”. I was a battleground. I felt very passive. Now, even though I’m still struggling with some after effects and I probably have another 6 months before I start to get back to being my old self, I feel like a survivor. I think it might come when you decide to claim it.

I’m not even sure what that means.

At the beginning it was only fear, a fate I couldn’t bear to think about. It was too big for me to cope with. Once the surgery was over with, I felt certain that it didn’t matter to me anymore, the treatment was already done, right? The thing was out, it was over. I underestimated the importance of that final, confirmed diagnosis. It was cancer. I couldn’t say the word. I thought I had accepted it then, but I really hadn’t.

Through treatment I felt like I was going through the motions laid out by my doctor and the nuclear techs. I did what I was told, exactly the way I was told to do it. I clung to the lists of rules. I didn’t take shortcuts. It was like dance by numbers, follow the pattern of feet on the floor. Except in my case it was the outline of my body, and my job was to lay down and wait it out. I didn’t feel like a survivor then either. I felt pretty much like a puppet whose strings are pulled by someone more knowledgeable and more powerful. I was an avatar of cancer treatment.

I didn’t feel like a survivor when the depression sunk in, when I couldn’t stop crying. When my hips burned in pain. I didn’t feel like a survivor when I struggled just to walk from my bedroom to the bathroom. I definitely didn’t feel like a survivor the day after my wedding, when getting out of bed caused pain in every joint and all I wanted to do was lie down and cry.

I didn’t even feel like a survivor when my endocrinologist gave me the first all clear. (Hopefully I’ll get the second all clear in a couple of weeks when I see her again. Apparently this life is going to be a series of all-clears, or the opposite. If you never have cancer, you don’t get told that you still don’t have it. But once you’ve had it, I guess they’re always going to be checking, and giving me the all-clear, again and again and again. Unless I’m unlucky.) You’d think that would be the moment, when you’re finished and it’s gone. Nope.

I think I started to feel like a survivor when started building it and communicating about it. I blogged about it all the way along, that isn’t what I mean. There was something pretty magical about turning it into virtual-physical form that made a huge difference. It made me less afraid. No, not less afraid: less in denial. Once I turned the experience into something concrete, and other people started experiencing it with me in this way, telescoped out with lots of discussion and questions, it was then I started to feel like a survivor.

Maybe you become a survivor when you’re no longer in denial about what’s happening to you. You survive the denial, you move past it. It’s harder to move past cancer. Maybe we need more words for this. Words that pop into mind that are useful: victim (because let’s face it; this is one of the stages we go through), battleground, warrior, survivor.

If there’s one thing I’ve learned through all this it’s that there aren’t enough words in the English language. Not by a long shot.

Made the Front Page!

Made the Front Page!

Check it out! Hot off the presses: the latest edition of the Metaverse Messenger, with Dulcie Mills and Verde Otaared’s article, “Cancerland offers a close look at disease”, profiling my build in Second Life. I kind of sound like an airhead, since I couldn’t really claim to have built it for the good of cancer survivors, and I have no good sound bites for the how and why or what of it. Ah well. Poppy and Feeg, who I met through the American Cancer Society’s support group in world, had some great and very kind quotations in there too. There’s my rather crappy model of a tumour on the front cover! OMG my 15 minutes of fame have begun!

How to Dehumanize a Person in One Easy Step

How to Dehumanize a Person in One Easy Step

Today on the train downtown, I got to thinking about my sick leave. Before I had to take it, there was a big part of me that dreaded it, since I knew I would be very sick, but there was this other part of me, a smaller, quieter part, that longed for it. I just wanted the break. I was so incredibly tired and stressed out and panicked, the idea of a long time out seemed like a good idea.

And it was, for a while. There’s something about lying on an operating table and facing a cancer diagnosis that puts things like paperwork and job stress into perspective. My job basically faded away into the wallpaper while I focused on my health. My main priorities were sleeping and keeping warm.

These days, I’m back to work full time, and I love it. I love so much of what I do, I feel so lucky and blessed at every turn. I’m learning a lot of new skills that are sharpening my brain and organizing my life. My projects are interesting and challenging and fun. But some days aren’t as good as others for me, health-wise. I have bad days. I often have very groggy mornings that make it difficult for me to get myself moving at a normal speed. And some days I have pain management problems that make it impossible for me to do anything other than curl up and try to keep breathing. So I have to take those days off. Fortunately those days aren’t too common, but at this point there is nothing I hate more than taking more time off work.

I’ve been away long enough. I’m supposed to be all better by now. (Har har.) I want to be perfectly healthy and on all the time. I want to catch up somehow, make up for lost time. I love my job and the people I work for and with, and don’t want to be a losing proposition for them. While paid time off work sounds nice, there’s a serious downside.

I’ve come to realize how dehumanizing it is to have no working relationship with the world you inhabit. Does that make sense? When I’m not part of the human community as a functioning, productive member, I feel lesser. I feel embarrassed and cut off. I feel like a leech. I feel like my opinion is irrelevant, like I’m erased. I’m not participating, I’m not pulling my weight; that’s guilt talking. But I’m also not able to exert control/power/influence, either. That sounds more sinister. I’m not able to shape my world in the way I want it shaped, the way I think it aught to be shaped. I can’t argue my points and make my case. I can’t direct the flow of things. My presence recedes, the world doesn’t have my stamp on it like it feels like it does when I’m working. Work defines me in ways I wouldn’t have guessed. It’s linked into my self-esteem in a way that I find intriguing.

We are social animals. We build working communities and participate in them. The nature of our value comes from the ways in which we participate in our community and help improve it, or make it run, or provide some kind of service. I feel it most strongly when I have to miss work for unfun reasons, as if I’m being dragged out of my community; I’m being removed. My voice doesn’t matter as much, if at all. I’m dehumanized.

So then I started thinking about the numbers of people who are constantly marginalized in our culture, the people who don’t provide a service, who don’t improve the world or make it run. The people who are expected to be the recipients of our goodwill and charity. Those same people who get noses turned up at them because they are “lazily living off the public dime”. What a terrible place to be in this culture, where your input determines not only your community worth but your sense of self-worth. Am I overstating the point? I am certainly one of those people who want their actions to at least subtly alter someone else’s day/life in a positive way every day. When I feel I don’t have that ability or option, I feel shut out, on the outside, no longer part of the human community. It gets me down.

Everyone brings value to the human community in their own way. Perhaps this is the heart of why I felt I needed to build Cancerland in Second Life, so that at least my fallow period could be transformed into something useful. September is Thyroid Cancer awareness month. In my optimistic moments I can imagine that this blog and my Cancerland build are monuments to my attempt to raise awareness about thyroid cancer, to help others to cope with what they’re facing, to help those who love someone with thyroid cancer to understand what they’re going through, and how sick they are even when they don’t look as sick as you expect someone with cancer to look. I can spin it all that way. Maybe I need to spin it that way.

But it shouldn’t be that difficult to feel that you have value; on the flip side, everyone should have the opportunity to demonstrate their value in some way. Perhaps your disability doesn’t allow you to hold down a job; do you feel, as I did, dehumanized by that reality, unable to contribute to the all-mighty economy like everyone else? The bleakness of it jars me. My own guilt and formulation of “value” in that sense absolutely reeks of privilege. It makes me want to seek out and support alternative ways for people to contribute, regardless of their sickness or disability or personal struggles. There are so many wonderful things that can make our community a better one; they don’t all involve going to work every day. It reminds me of the power of play, the power of art, the power of voice. These things can have more impact on people’s lives than many workaday jobs. I want to have a personal revolution on the qualities that define that nebulous concept of an individual’s “worth”.

The Witching Hour

The Witching Hour

What I’ve learned lately is that there are many kinds of tired. More than people generally accept. Perhaps the language around tired in English is simply not rich enough; perhaps the creation of language and vocabulary is a young, healthy person’s game.

First, there is physical tiredness. This is the best kind by a long shot. After a long day of physical labour, sleep comes like a sweet breeze and is an uninterrupted rest. After that, there’s the tired you get when you’ve gone too long without sleeping; that dizzy kind of tired, the kind that sometimes doesn’t lead to sleep as fast as you’d think it would. Then there’s the kind of tired you feel when you’ve got a bad cold or flu or a fever; that bodily exhaustion, the stuffiness in the head, the grogginess. All generally relate to sleep very directly. You get tired, you struggle (or not) to fall asleep, you wake up and feel better.

That’s not what it’s like when you’ve got thyroid issues.

Walking through a world where air is thick like molasses; sleeping and not feeling rested; too tired to think, to parse words, to imagine things. To tired to remember; being startled by the same coat hanging by the door more than once (forgetting the simple explanation: you’re just keeping it for someone else, it’s not a dark shadow peering in at you).

Why is it that sleepiness seems to stem from the eyes? I’ve seen it in both of my nephews, who rub their eyes when they’re tired. I feel it myself when I feel groggy and slow; as if my sleepiness is stemming directly from my eyes.

This is what I have learned: being tired and sleeping are not necessarily connected. If your sleep is thrown off hormonally, you can get plenty of sleep and still feel tired, both mentally and bodily. What do you call it when you’re not so much tired (though it feels very close), but you feel as if your body missed a step along the way between sleep and wakefulness? There’s that witching hour in the middle of the night when you wake up for some reason (a voice in the hall, a car back-firing, an anxious dream), and the world seems different, dream-like, unreal. Your thought-process is on some other level where the rules of the world are different; walls move, the dean rides up to your office on a horse, you chew through your own broken teeth. And while you’re in that dream-space, the real world is confusing. A dripping tap is an enigma; the feel of a cat’s tail against your shin can make you jump three feet into the air in fear. Sometimes (not all the time, mind you, just once in a while) I don’t think my switch between that world and the normal one entirely materializes. So I can go for hours feeling like I’m about to fall back to sleep at any moment, where things will make more sense again. Phrases contain words but don’t make sense; there’s text on the screen in front of me but I can’t read it. Being unable to keep up with a conversation; asking people to repeat themselves more than once, even though a question was already answered moments before.

Somehow the word “groggy” just doesn’t quite cover it.

Though these days are few and far between. I’m doing pretty well, but I have my occasional rough days (like yesterday and today).

I got my test results back. No more cancer, by the looks of things. I’m in the clear for a while.