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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


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


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.



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.


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:

one week post surgery (mid-February, 2008)

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

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.

Synthroid Cyborg

Synthroid Cyborg

I haven’t been saying much about all this yet, mostly because I’m horribly disappointed in my progress, and embarrassed, and also guilty and ashamed that I’m not better yet. This is what happened: my first day back to work I felt pretty fantastic; the next day I was tired, the day after that my joints started to swell a little. But I recovered alright, and aside from being increasingly tired, I was doing sort of okay. There are some things I didn’t want to admit to: while I used to be multi-task a lot, now I can’t seem to. I forget about other windows too easily. I’m easily distracted and forgetful. I’m having trouble concentrating at all. I feel sort of blank. Things went rapidly downhill after that, until within a few days I had excruciating, nearly immobilizing pain in my hips (for reasons as yet unknown), I burst into violent sobs with no provocation or apparent reason whatsoever, and I was entirely, completely exhausted. I hoisted the white flag. I know when I’m beat. My GP took one look at me and said, “Okay, that’s enough. Rest.”

He also told me the thing I hadn’t known yet: my first post-radiation nuclear scan showed something unexpected. That’s why I got called back to the hospital to do it again a week later. It wasn’t a technical problem, or bad pictures. My thyroid bed was lit up like a christmas tree on the scan, indicating more remaining thyroid tissue than expected. My GP told me this because I wanted to know and no one would tell me. He isn’t sure what they’ll do about it. He mentioned “a second surgery”, but that doesn’t seem likely to me, and my GP admits that he has no idea. My surgeon is good. If he didn’t get it out the first time, it’s not coming out. Possibly it means another round of RAI (radioactive iodine), which is not a great scenario either. Going hypo is hard (and takes up to 5 weeks), and recovery from hypo is hard (takes anywhere from 2-3 months). My current recovery has been difficult and I don’t relish the idea of doing it again. But I won’t find out more until the end of the month. So this is why I didn’t get a cake with writing on it in pink icing saying YOU’RE CANCER FREE!!!! They don’t quite know yet. Not for sure.

Everyone told me this was a simple deal; surgery, lounge for a while, sit under a machine for a while, take pill. Easy. I can’t overstate how much this was a poor description of what was to come. And at each stage I thought I was over the very worst of it, only to discover that there was another, taller hurdle to leap over. There is all at once too much information about thyroid cancer around and also not enough. I guess no one is ever ready to hear the whole truth.

I’m reminded of the terror that shook my whole self prior to that surgery; I was terrified of what lay beyond that point when I walked into the operating room, and not just because I was scared to have surgery (which I definitely was). I was scared of the whole thing: being cut, being bandaged up, being in pain; going hypo, the possibility (certainty) of having cancer. Having to incorporate all that into me. Having to be strong enough through that. And now I understand why that terror was justified. It’s not that it’s horribly painful (though the hips, as I say, were really something else, but that has now subsided). It’s that it alters absolutely everything about who you think you are. It’s hard to pick up and move on; you’re just not the person you think you are.

The chief librarian at my place of work likened it to having your central control panel ripped out, and that’s a good comparison. My own metaphors are much darker.

My whole life I didn’t feel all that much of a mind/body split. I am what I am, and all of me is me. It was a very simple equation. Right now I feel like a wine topper stuck on top of a bottle, a disembodied personality; I’m attached to this body, but I have no idea how it works, and half the time there appears to be no relationship at all between what’s going on in my mind and how my body is behaving. I am a terrible judge at what will make me feel good or bad, what will make me cry, what will exhaust me. I can’t determine how much I can do before I hit a wall, I seem to be deaf to any hints my body tries to give me. Today I actually hit a wall in the middle of a sentence. Normally you know how much oxygen and energy you have left to say what you were about to say, but not me. Not right now. All my dials are flailing. Nothing tastes or smells the same, on the banal edge of it. While I never got car sick before, now I’m noticing it, a little, when I take the bus. Where did that come from? Twice now I’ve carried gifts onto buses and left them there, just sitting there, on the seat next to me. Didn’t even notice they were missing until days later. It’s as if I’m not really here at all.

So my realization is this: synthroid (artificial thyroid hormone, to replace my absent thyroid gland) makes me different. Of course it does; given how much it controls, it’s like my new landlord, my new roommate. I’m still me, but my body is now fundamentally different. I’m a pharmaceutical cyborg, with a crucial bit of my physical functioning turned over to carefully calibrated technology in the shape of a tiny purple pill. It’s not as if there was a choice or any other alternative, so there isn’t much room for regrets. If I stop taking it, I get sick and die. Until that looks like a valid option, there’s only one way into this town.

I live in a fundamentally and permanently changed my body, and I need to accept that and begin to learn its rules and cues. There must be a time, when we’re very small, when we don’t know our bodies very well. I can’t imagine that we know from birth how our bodies are going to react in certain circumstances, how we need to protect them. (I can’t help but split mind/body even in my sentence construction; it’s so old school but so completely my reality right now.) Somewhere along the way we must learn to make friends with our bodies, to listen to them and just know, as if instinctively, when something’s wrong, or when they need something, or when we can step it up or need to step back. My slate is wiped clean and I have to take it slowly, learn what I can and can’t do.

It’s not something they’re likely to tell you when they diagnose you, though I’m sure I wouldn’t have wanted to hear it.

You’re not going to be just you anymore. You’re you + synthroid. It will be different.

I suppose I’ll get used to it with time.

Everyone’s a Billionaire

Everyone’s a Billionaire

I’ve been thinking about this lately, because I’ve had a serious downturn in my recovery this week. I can speculate about why, but to be honest I’m not entirely certain. My body is rebelling, and it goes from vaguely achey to gobsmackingly, agonizingly painful. It’s incredibly frustrating. I’m supposed to be getting better, not worse. I have work to do! This is getting seriously old; I’m so over the whole illness thing. I want a normal, reliable body back.

This state has brought me some insight into things I should be more grateful for when I’m not sick. Sadly, the best way I can think of to communicate it is with a money metaphor.

When it comes to energy, most people are billionaires. They have so much energy that they occupy most of the day spending it frivolously and furiously. Jetting up and down the stairs, dancing, talking long walks, fidgeting. Some people make a point of trying blowing their entire savings account as often as possible by running or doing aerobics or other expensive activities. Obviously this practice is very good for their local energy economies, because by the time they wake up every morning they have earned all their energy back in interest. Their savings accounts are constantly replenished by a good night’s sleep. Billionaires never have to count their cash; even when their wallets appear empty, their savings are merely on temporary hold.

And then there are the energy poor. They only have a few dollars in their pockets from the start, so they have to decide what they need to spend it on over span of the day. Each purchase needs to be carefully thought out and considered. Need to walk up the stairs a few times? In order to do it, a few other things need to be crossed off the list, like the ability to focus and concentrate, or being able to communicate with others for the duration of the day. The energy poor conserve so carefully that stray body movements are controlled; do you need to fidget while on the bus? Once you’ve sat down, do you really need to shift your limbs? The original action is enough to get you there. Sitting still until the next necessary action seems like a good move. This isn’t an endless cup of riches, it’s only a handful of change. While billionaires get their money back every morning, the energy poor have to wait much longer than that. Sleep doesn’t give them the energy interest boost; they need a few days to earn that energy back. Billionaires rarely need to pull out a credit card, but if they do, they can rest assured that balance can be repaid very quickly; the poor draw their line of credit from their joints, muscles, bones, and heart; slapping that card down at the till means sacrificing some bodily well-being for a few more hours of activity, a few more flights of stairs, an hour or two of conversation. At the end of the day the poor have an empty bank account and the stinging pain of physical debt, waiting for a pay packet.

Guelph Pictures

Guelph Pictures

I was going to post about how utterly lousy I feel today (in particular, the WIDE RANGE of associated symptoms that come along with hypothyroidism, and how HELLISHLY LONG it takes before they go away and how NO ONE really tells you about any of them), but instead I will post a picture my dad posted today on his new photo blog:

He’s posting all kinds of fun pictures of Guelph lately, I’m delighted. Guelph is a very pretty town. I miss it.

The Good Cancer

The Good Cancer

I’m up WAY too late (remind me not to make myself a nice huge mug of caffeinated tea right before bedtime) reading the blogs of other people who’ve been through what I’ve been going through for the last few months, and I came across this:

People, even doctor-people, tell you that thyroid cancer is “the easy, one, the one you want to get”. That’s their preference, because it has its own protocol, its own special weakness, its kryptonite is iodine. What they don’t tell you, and should, is that it’s easy for them. For the patient, it’s not easy. The body still rebels. Innocent cells still get hurt. Don’t get me wrong…I am damn grateful that I don’t have one of the other cancers. I’m just annoyed at how trivial they all made this seem, how light and easy they said this would be. If you’re in my situation now, I’m sorry. I know you want all kinds of reassurance that it’s not going to be so bad. Trust me, it’s not so bad! Only sometimes! I’ve got friends battling 6 months of hell right now, just to stay alive. You wouldn’t want to ever trade places with them, your cancer for theirs. But, you don’t have the “good cancer”…there’s no such animal. So, any fear, any panic you’ve got…it’s okay. You are entitled to it.

This paragraph could not resonate with me more. They don’t really warn you about the weird path on the way to treatment, how very sick they make you in order to treat you. Severe hypothyroidism is significantly more than just feeling “tired”. At least my endocrinologist had the decency to frame like this: “You’re going to be feeling pretty low.”

Also, I found a link to Barbara Ehrenreich’s excellent essay, Welcome To Cancerland: A Mammogram Leads to a Cult of Pink Kitsch, an excellent rebuttal to both the joyous optimism cancer patients are supposed to feel and the cult of consumerism that has enveloped breast cancer, and hinting that the culture of ultra-feminine cancer care and support is actually turned into a form of busywork that prevents feminists from rising up and taking action that might help prevent this disease.

Like everyone else in the breast-cancer world, the feminists want a cure, but they even more ardently demand to know the cause or causes of the disease without which we will never have any means of prevention. “Bad” genes of the inherited variety are thought to account for fewer than 10 percent of breast cancers, and only 30 percent of women diagnosed with breast cancer have any known risk factor (such as delaying childbearing or the late onset of menopause) at all. Bad lifestyle choices like a fatty diet have, after brief popularity with the medical profession, been largely ruled out. Hence suspicion should focus on environmental carcinogens, the feminists argue, such as plastics, pesticides (DDT and PCBs, for example, though banned in this country, are still used in many Third World sources of the produce we eat), and the industrial runoff in our ground water. No carcinogen has been linked definitely to human breast cancer yet, but many have been found to cause the disease in mice, and the inexorable increase of the disease in industrialized nations-about one percent a year between the 1950s and the 1990s-further hints at environmental factors, as does the fact that women migrants to industrialized countries quickly develop the same breast-cancer rates as those who are native born. Their emphasis on possible ecological factors, which is not shared by groups such as Komen and the American Cancer Society, puts the feminist breast-cancer activists in league with other, frequently rambunctious, social movements-environmental and anticorporate.

But today theirs are discordant voices in a general chorus of sentimentality and good cheer; after all, breast cancer would hardly be the darling of corporate America if its complexion changed from pink to green.

In the mainstream of breast-cancer culture, one finds very little anger, no mention of possible environmental causes, few complaints about the fact that, in all but the more advanced, metastasized cases, it is the “treatments,” not the disease, that cause illness and pain.

Even the heavy traffic in personal narratives and practical tips, which I found so useful, bears an implicit acceptance of the disease and the current barbarous approaches to its treatment: you can get so busy comparing attractive head scarves that you forget to question a form of treatment that temporarily renders you both bald and immuno-incompetent.

Fascinating stuff. That last line reminded me instantly of one of the major points of the graphic novel Persepolis, which I’ve recently finished; in distracting the population with head scarves and the length of women’s shirts, radicals and dissidents can be distracted away from the cause of revolutionary action. For the record: thyroid cancer is increasing in frequency more rapidly than any other malignancy. It is now the 8th most common form of new cancer among young adult females. And in case you didn’t know the cause: at high risk of thyroid cancer are people who have been exposed to radioactive particles from atomic weapons tests and nuclear power plant accidents such as the 1986 Chernobyl disaster in the former Soviet Union. I’m told the Toronto region has one of the highest rates of thyroid cancer. But I guess the best thing I can do is go shop for scarves to hide my scar and keep on being brave, right? The idea of making room for anger in cancer care absolutely fascinates me.

The Progress of the Scar

The Progress of the Scar

As you can see, it’s starting to fade out in spots. I’m taking these pictures with my laptop’s built-in camera (and Photo Booth), and I think it takes a bit of red out of it, but that’s roughly what it looks like. The faded out spots have no ropey scar tissue (or stitches?) underneath it, while the redder parts still do. At first it was one solid ropey line under the skin, with the thinnest possible little sharp scab across it on the surface. (The scab came off after the first day sans dressing.) Since then, bits of the ropey line have been falling back and feeling normal, making it bumpy to the touch. It’s like a line that’s being erased in random places. Very strange.

It seems to me, given the way it’s healing, that you can sort of guess at how the incision was made. You see the red dot in the direct middle of it…it’s healed down to nothing on either side of the direct middle, but there’s a half-inch bump in the very centre of the incision. So I imagine that he started with the scalpel in the middle, and then dragged it outwards, first on one side and then on the other, with the least amount of pressure at that point directly after the puncture, but a bit more on the ends. It’s like he was doing some geometry homework on me, and that’s the only comparison I’m qualified to make.

It still doesn’t hurt, in case you’re wondering. But I think I’m starting to get a bit of feeling back around it. I don’t even notice it feeling tight anymore. The skin is (mostly) back to its stretchable self. Surgery is really not the hardest thing about thyroid cancer, not by a long shot. The human body is an amazing thing, and I’m frankly shocked at how well it bounces back from being sliced open and sewn back up. Our ability to heal ourselves is amazing. Another thing to be grateful for.

The New Day

The New Day

I had my second, unplanned nuclear scan nearly a week and a half ago now. I didn’t want to say too much about my current status, because it feels so very uncertain. The second scan wasn’t as complete as the first; it was about 25 minutes of lying extraordinarily still while the machine took its pictures rather than a full hour it took the first time. When I asked the technician why I was doing this again, he said, “It’s technical. It’s not you.” So perhaps it was just an unreadable scan? I’m not sure. I haven’t heard anything from the hospital since. I got the call to come back for the second scan 9 days after the first one; it’s now been 11 days since the second one.

I wish someone would call me and say, “It’s over! You’re cured! You no longer have cancer!” but I guess no one gets calls like that. Ends with a whimper, not a bang.

As my endocrinologist told me to, I took my first thyroxine pill after the first scan. And the way I interpreted after was in the bathroom of the nuclear imaging department at the hospital directly after they finished. Perspective: I had been severely hypothyroid for weeks at that point. I had a horribly hoarse voice, I was irritable and anxious, I spent most of the time groggy and tired, my body movements were slowed down dramatically (meaning I got in a lot of people’s way on sidewalks because I walked so slowly), my body temperature was dipping under 35 degrees, and I was getting married in three days. I was very pleased to take that first pill.

How long would it take? I have to admit, while getting rid of hypothyroidism does not happen overnight, the following morning my voice was slightly less rough, and I felt very slightly less groggy. (Defining “groggy”: every morning with my parents, my mother got out of bed around 9:30 and made coffee (tea for me) and breakfast. Directly after surgery, I got up about 2 hours before that and read books or checked my email. Toward the end of this experience, I woke up hearing her in the kitchen and wished I could go back to sleep. At my worst, I got up, went into the kitchen to say good morning to my mom, and while I understood the words she was saying back to me, I couldn’t make sense of the sentences. I was so groggy I couldn’t parse what she was saying to me until a good 20 minutes or so after I started drinking my tea.) The next morning, my voice was definitely getting better. I felt very positive.

What I didn’t realize is that the body picks and choses which parts it wants to heal first. I guess that makes sense; when you’re out in the cold for a long time, your body decides to give up on your limbs and focuses on your core functions, so why should it be any different in this case? My voice got better fast, my grogginess receded, my body temperature started going up pretty dramatically, but suddenly I had swollen and achey wrists, ankles, knees, and hips. I had no idea that was part of the deal, even though I’d been staring at a list of symptoms for weeks at that point. I was getting puffy around the eyes. It’s as if parts of me got better and other parts got worse. I started to read about theories about fibromyalgia/chronic fatigue syndrome being actually just a manifestation of hypothyroidism (tired, sore joints, muscular pain). I also started to notice horrifically dry skin; I could sand my walls down with my elbows. I wasn’t really in an ideal physical state for my “honeymoon”. While I was pleased to see Jeremy again (finally!), there I was: tired, irritable, achey, slow, and not much fun.

Today, it’s been two weeks since I started taking thyroxine. It’s also the beginning of projected double-digit temperatures in Southern Ontario (they’re projecting 11 C degrees today, 14 C degrees tomorrow), so it’s the first week that’s really felt like spring. Coming out of a hypothyroid daze is very much like coming out of a kind of hybernation, so this all feels very well timed. Today, I feel a bit clearer in the head. I have a bit more energy than I’ve had in a while. I can’t quite remember what “normal” feels like, so it’s hard to compare, but I think I’m getting there.

All I have Left

All I have Left

I thought it was finished, but it’s not. And I don’t know why. I have another scan tomorrow morning, first thing. The hospital called this afternoon. They tell me it’s not uncommon for doctors to request a second scan, but it’s clearly not routine, since we didn’t book it last week or the week before.

In spite of all the adjectives people have used in reference to my posts on this subject, which I felt were ill-suited at the best of times, I’m not feeling particularly calm, brave, strong, or positive. I’m just bewildered and scared. Once again, I’m caught in the space between panic, denial, and hope: it could be something terrible, another cancer somewhere, another surgery looming, another round of radiation. More nausea, more headaches, more fear. Or it could be nothing. Until now, they’ve told me there are no signs, no indication of any spread, lymph nodes negative, all that. My surgeon said: “you’re probably cured.” My endocrinologist cut my radiation dose in half because of my low-risk of any additional tumours. So could be nothing at all. And yet: a surprise call, another repeat test required. The doctor isn’t in until tomorrow afternoon, no one can tell me why.

I want to know why. I’m scared to know why now.

This is the point where you remind yourself that when you have your health back, when your feet are steadier under you again, you will be grateful for it every waking moment. Every damn waking moment.

The League of Extraordinary Patients

The League of Extraordinary Patients

Radioactive isolation wasn’t exactly boring. It was sterile and stark, with absorbent squares of paper taped to the floor in places I might walk, chairs covered over with them, tables draped in them. We had a terrible storm while I was in there, which may (or may not) be the reason for the terrible headache I got that just would not go away.

I arrived Thursday evening, earlier than they expected. Technically you don’t have to be in before 9, but I was exhausted and my parents had an hour drive back home to contend with, so I arrived at about 6:30. The room was a little frightening in it’s utilitarianness. Somehow this seemed less like a spa and more like…I’m not sure. Like entering a leper house, perhaps? Something where your contagiousness dominates so completely that anything else is constantly secondary. My parents must have felt it too, because they both hugged me before they left. They only do that when they don’t expect to see me for months at a time. I got a little weepy. I felt very scared and very sad and very alone. That first night I slept very fitfully, and some man from the ward kept wandering into my room. Three times between 11pm and 2:30am. That was a bit off-putting.

Things I needed to do: bathe at least twice daily, change the sheets and my hospital gown each time I did; never ever touch the floor barefoot; flush the toilet 3 times every time I used it; wash my hands religiously; rince out all food containers and put them in a garbage container that would stay in the room with me the entire time, just so that I didn’t have rotty food smells drifting over me while I was there.

Bleary-eyed but in a more positive frame of mind, I got the dose on Friday morning, and they opted to give me only one pill rather than the anticipated two; only 105 millicuries of radiation. (I found it strangely comforting that they measure in Curies; I had a lovely book about Marie Curie as a child, and the doseage reminded me of it.) This reminded me that I am one of the lucky ones whose cancer is not expected to have spread, so that greatly reassured me. The pill itself was kept in a little radioactive-safe container, like something out of James Bond. They watched me take it, I suppose in case I changed my mind, and then left me for a few hours. I felt nothing at all, no nausea, no pain, nothing. Then a nuclear medicine technician came back with a geiger counter to see how I was doing. “Perfect,” she said, and then she left. She was the last person to enter the room before Monday morning. I was in a pretty good frame of mind by then. Everyone had been extremely friendly and helpful, and I was told that because I’m on such a low dose, those rules pasted on the wall (the YOU MUSTs and the PLEASE DOs) only really applied if I felt like it. She told me I could change the sheets “if you need something to do.” I felt bathed in grace and thankfulness that I was in the optional camp and not the “we are genuinely scared of you” camp. I guess that’s what so put me off, I felt like I was becoming some kind of biological weapon, and everyone knew it.

The first day was good. Mostly I just read a book, but I watched some tv in the evening. I felt absolutely fine and very positive about the experience. My earlier fear abated. Nurses knocked on the door and left things on a table for me, and I would open the door and pick it up. Once, a nurse actually poked her head in to see me, but mostly I didn’t see anyone. They would call a few times a day to see how I was doing and if I needed anything, and without fail they called me “sweetie” or “honey”. Given that I had no direct contact with other people, I actually quite liked this.

The second day, the storm started, and my head and eyes started to ache. I slept well but woke up feeling exhausted and uncomfortable. I ate the little breakfast they gave me and went right back to sleep until noon. I felt a little better in the afternoon and read for a while, but by evening I had put in two calls for tylenol and felt a little rough. I was awake for no more than 10 hours that day.

I had an important realization at this time. The ward where I was staying was not, as I thought, a generic “place where sick people are”. I don’t know why I even thought such a place existed. I was on the oncology ward. Well of course I was, right? Where else would I be? But somehow, this just struck me like nothing else had. No wonder everyone was calling me “honey” and “sweetie”. I came in with braids in my hair flanked by my parents. I was clearly the youngest person in the ward by about 20 or 30 years. And it put my room into perspective pretty damn fast: this wasn’t just a room for people undergoing radioiodine treatment. You can get radioiodine treatment for a few different things, including hyperthyroidism. This was a room for people 4 weeks out of a total thyroidectomy aurgery whose pathology had come back “carcinoma”. Everyone in this room spends 4 nights and 3 days, pacing in the same way, flushing the toilet the requisite three times a zillion times a day, drinking tons of water to keep the radiation moving quickly out of their kidneys and bladders. How similar we all are, how rigidly similar our experiences would be. I felt like a piece on an assembly line; I felt kinship. It made the process both easier (I’m one of the lucky ones, remember) and harder (my membership in the league all the more defined and definite).

The third day started much as the second one did, with a desire to go right back to sleep, which I did. But this time, when lunch rolled around, I felt a wave of nausea. Nausea is a common symptom of radiation, but it’s usually after you take the pill. I didn’t actually throw up, but when lunch arrived (pasta) the smell of it threatened to push me into the absorbent-sheet coated bathroom for fear of bringing up all over my sterile room. I wished I hadn’t brought it in; now that it was in the room, I had to deal with it myself. I left it sealed up in its microwaveable glory and pushed it into the farthest corner of the room. My legs ached, my head was pounding, my eyes were sore, and my stomach was…touchy. I made an early call for more tylenol and tried to take it easy. The nausea passed, but I still never entirely trusted my stomach. I ate the dinner they gave me (shepard’s pie with green beans), but I didn’t entirely feel confident in my belly again.

I bathed fairly regularly through out this. I would split up bathing chores; once, just wash self; another time, wash hair. I brought in a salt scrub and took my time scrubbing my elbows, my feet, my legs, my knees. My hands were getting dry with all the constant washing, so I spent some time scrubbing them too. It was soothing, and made me feel somewhat less plague-ridden.

And I woke up on the fourth day, ready to push back the stone in front of the tomb and walk away with the story of my time in this unique and quiet little hell. I didn’t get bored, no, not as such. It was neither as easy nor as difficult as I expected.

Irradiate Me

Irradiate Me

Contrary to (seemingly) popular belief, I haven’t actually had any radiation yet, and at no time was my radiation postponed or rescheduled. I cannot have radiation until 4 weeks after surgery, which is officially today. Radiation requires me to be in a state of rather severe hypothyroidism, which I’m most definitely in right now. The last few days have been, I must admit, particularly challenging. I’m officially checked in to the hospital now, and out on a day pass. I spent most of the afternoon finding a parking spot and failing, trying to work out where to register at the hospital, registering, waiting for the nurse, getting debriefed, and finally making some decisions about what is and is not coming in with me. I will be incommunicado after dinner tonight when I go back into the hospital and stay there until it’s all over. Which is probably for the best, because I’m pretty irritable and headachy, not to mention utterly exhausted.

I have no idea why there are these rumours floating around about my treatment, and it’s a bit disconcerting to hear about them. I know I posted about radiation and my plan for the experience; I suppose I can just take it as a compliment that my post considering my options was so vivid that people imagine I’ve had the experience. I’ll post a (too) long treatise on it once I’ve passed through it and am on the other side, never you fear.

I’m definitely trying to stay positive, but I’m not out of the woods on this one yet. There’s a fair bit of treatment and recovery left to go.

Thinking with Demons

Thinking with Demons

After I got home from the hospital, my mother said, “There! That wasn’t so bad after all, was it! You were all scared over nothing!”

It hadn’t really hurt. I had had no complications, and I had been released early. I had been in a terrible panic leading up to the surgery, and a terrible panic as they put me under the general anesthetic, but in spite of the lack of pain, I can’t say I was scared over nothing. Knowing what I know now, I can’t even project myself backward as any less scared than I was.

I was scared from the first biopsy last June, though I clung to the mild confusion of the attending doctor who couldn’t work out why we were even doing the biopsy. A long-standing goitre, probably the result of Hashimoto’s thyroiditis; why were we making this fuss? I was reassured by his unconcern. But when they asked for a second biopsy, I felt a quiver in the pit of my stomach. I didn’t entirely believe it, I thought I would be vindicated, but I had this sinking suspicision, this strange clawing that reminded me that I had reason to be worried.

My family doctor told me the results by accident; I went to see him for completely other reasons. “They’ll probably want to remove the nodule,” he said. “You won’t even need to take pills.”

Surgery. That was in October. I knew even then that it was coming, and I wasn’t scared of the surgery per se, but it was something more. Something radical was changing. Someone was going to change my self-perception, me. Someone, something, some diagnosis. There was a constantly shifting diagnosis, lots of caginess, lots of reassurances.

When I finally saw my endocrinologist a month later, she had very little to say. “Two questionable test results,” she said. “That will have to come out. Are you ready to have surgery?” She booked me an appointment with a well-trusted surgeon, and I got into a cab and went straight to the bar.

I’m not sure I can describe what’s so scary about it. Your own body turning on you, hiding secrets from you. I’ve never felt the mind/body divide so much as in those moments, as if my body is a stranger to me. She never said the word, she never said I think this is cancer, but she barely needed to. I felt the words as if she had.

And I felt angry. I’ve had this weird thyroid for 17 years. Has it been sitting there festering, slowly preparing to turn its claws on me, all that time? What if they open me up and discover that I’m a lost cause, incurable, a sad morality tale about not following up properly on medical issues?

That might have gotten to the root of my fear, and the greatest lesson I’ve gotten from this. You cannot trust that someone else is going to look after your best interests. I knew I had a strange thyroid. I clung to the story I wanted to hear, that it was just weird, funny-looking, but otherwise okay. I told every doctor I’d ever had the whole story of how it was found, the tests each doctor performed and its results. “It’s not cancer,” I’d say. “It just looks like cancer.” My certainty seemed to convince a legion of doctors, all the way along. If you want them to leave you alone in your delusions, they will do so. I was angry that that legion of doctors, who should have known better than to trust a 20-something or 30-something when she says that something in her body looks like but is not cancer, allowed me this hall pass into happy, quiet denial. But I was even more angry that I requested it. This was primarily my fault.

When I met with the surgeon in December, he talked to me as if I already knew, as if the words were already on the table. “This is cancer,” he said. So simple. He gave voice to my worst possible fear; not so much that it would be cancer (though that was certainly part of it) but that someone in his position would believe that it was with so much certainty. In his certainty I had no refuge in denial. I wasn’t ready to face it. It was a dark shadow of a possibility that I had been dodging for most of my life.

I was (and still am) scared of cancer. It’s that weird insider who goes wrong, the member of the family who stabs you in the back, the part of your own brain that throws obstacles in your way or distracts you with terrifying ideas. It’s your dark twin, hiding always a few steps behind you, your anti-self, reaching out to trip you up. It’s you; the part you don’t like to acknowledge. Your demon self. The part that runs of to worship the devil and dance with the witches in your absent twilight memory. It’s a nebulous enemy that you have to embrace, because you can’t distinguish it from your friends. But I’m not sure if it’s that that scared me so much, or, not just that.

As my fear drifts away (for the most part), it’s hard to fully capture the motives and logic behind it. I closed up my office on my last day at work and trembled; it was one of the hardest things to do. I would not come back there until it was all over, and that was not reassuring. I would come back with some kind of dark, sad knowledge, I would be inalterably changed. It’s not the scar. It might be the knowledge of my own mortality, as if, on the operating table, I would see the date and cause of my own death written above me on the ceiling. It might be that on my return I would be, without any more reassuring doubts, a person with cancer. I am honoured to be among the many others that bear the title, but was terrified to join their ranks. Talking about how curable it is (which it is!) was less reassuring and more coldly definitive; no matter the outcome, I have now passed by that particular guillotine. It’s shallow and nonsensical, but I think it was at least partly at the base of that fear.

When my friend Jason came to pick up my cat, who would be his houseguest until I returned to health, I collapsed in fear. With him gone, I have more undeniable proof that I would really endure this, it was real. Real, and soon. Denial is a beautiful mask, so easy to put on and hide behind. Each little thing that pushed the mask askew caused me to fall to pieces.

People have often told me that I am awfully calm and controlled about all this. I have no idea where that impression comes from. This has certainly been one of the most uncontrolled and least calm period of my life. My hindbrain has been constantly making me leap and twitch, prompting me to fight or flight and uncontrollable tears and hyperventilation. But fight against whom? Flight from what? The answer is me in both cases.

When I walked into the operating room, I can’t tell you why I broke down, except to say that I was inexplicably terrified. Inexplicable because I trusted the people in the room. I trusted the surgeon, I had no doubt that the surgery would go without a hitch and they would take the best possible care of me. I wasn’t even that worried about pain, because I knew there would be morphine, I knew they would give my any pain killers I needed to make it through. I knew I would be monitored. I can try to rationalize it and say that it had to do with mortality, and facing this evil version of myself that could, in time, kill me. I could say that that moment took me from normal, 33 year old woman on the verge of getting married, with a fantastic job working with fantastic people, to 33 year old woman with cancer. But I’m not even sure that’s at the heart of it. That hindbrain response is powerful. A sort of psychological fight or flight took over, and I just reacted to the fear outside of all logic. There is a point where you just can’t endure another bit of stress, where you just can’t bite it back. There on the operating table I was struck once again by the mind/body split; my body was reacting on its own to the stress, the idea of the tools of the surgical trade which would shortly slice me open. You can only talk yourself out of so much.

A week later when my surgeon told me the truth about what was inside me, it was, on some level, my worst fear. There wasn’t time for me to respond; we had other things to talk about. It was, for the most part, over. It was there, and now it’s gone, and there’s no evidence that there’s anything remaining. I’m not a morality play, I’m evidence of good diagnostics and the value of early detection. But walking out of that office and telling my mother, my father, that their youngest daughter had…I couldn’t even say it at first. I got teary. “It’s over,” I could say. “It’s okay, but…it was. It was.” I’ve already had the panic and fear. That reaction was a quiet little shadow of what fear was there before. I can’t deny it anymore; the reality of this situation is carved into the base of my neck. I suppose I’ve forced my demon self out into the light now. Painful, but less difficult, perhaps, than constantly searching for her.

It may be easier to face truth than possibilities. But I’m still not so sure. The truth is very stark. But maybe the constant dip into denial calls out the demon in us.

Write what you Know

Write what you Know

Eventually I will get back to interesting posts, the ones about information and educational technology and fun internet things, but I’m currently working on my dad’s 10 year old win98 machine, as my ibook is in the shop, and he’s got dial up. So I’m not using the fun internet things to their fullest. (He at least upped his “one hour per day” plan to “unlimited”, so now I can wait an indefinite amount of time for things to load.) My world is largely dominated by health-related matters at the moment, and since I don’t plan to experience this cancer business again (and, for the record, there’s no reason why I should fear I might; there’s no direct correlation between thyroid cancer and any other kind), so I’m being self-indulgent and recording my experiences and reflections here.

There was a kerfuffle some time ago when a more serious librarian blogger looked down his nose at those of us who don’t post exclusively about librarianship on our blogs within the “biblioblogosphere”, and as I recall a few of us rallied around the idea that our lives are not exclusively about librarianship, and we are healthier people for having multiple interests and experiences to share and ponder. And I will stand by my contention that I primarily keep this blog for me, and I will post as I feel compelled to. In the end, I think it makes me a better professional to see fodder to ponder in all aspects of my life rather than confining it to a tiny strip of “acceptable” material. I don’t get paid to keep a blog. I blog because writing is how I process information, and I like to share.

I’ll get back to the info tech soon enough.

How can I keep from Singing?

How can I keep from Singing?

Things that were difficult or seriously uncomfortable in the week or so after surgery: turning my head right or left, bending down to pick something up off the floor, laughing, coughing, sneezing, yawning, lifting things with any weight, sitting up while lying on my back, swallowing, and speaking loudly.

Things that are difficult or seriously uncomfortable today: any tasks that require somewhat significant amounts of energy, mornings (I wake up very tired even after 11 hours of sleep), temperatures below 22 degrees C, keeping warm, shouting, and singing.

Yes, singing.

I hadn’t tried to sing before the last couple of days, but I can’t do it. I can barely hum. It feels like I don’t have enough voice to cover it, as J.R.R. Tolkien put it when trying to describe the effect of a lifetime guarding the great ring: he felt like butter scraped over too much toast.

Perhaps I just need to practice. If you happen to hear a thin warbling sound in your travels, kindly just look the other way.



The part I didn’t anticipate was coping with the scar.

I knew there would be a scar. I knew it would be fairly large, and I knew it would sit just above my collarbone. Prior to surgery I didn’t waste any time worrying about having a scar, as I have never been a particularly beautiful woman who traded on appearances, and have never been especially vain, so worrying about such a thing seemed too trivial and silly. I was more worried about the cancer side of the equation rather than the scar side. But the scar is there, and it needs to be coped with just the same.

While in the hospital, I didn’t want to look at it at all. It was covered in a huge (and largely useless) dressing overnight, which came off the following day. I had no idea what my throat looked like. I felt no pain, but something told me I wasn’t ready to know exactly how bad it was. Better to just concentrate on not ripping anything open. While in the bathroom at the hospital, I didn’t bother looking in mirrors.

Just before I left the hospital I discovered that I had a large oval sticker over the whole thing, with surgi strips neatly covering the wound. I learned this because they took the sticker off. Some friends had come to visit with me and they were in awe how good it looked. So I went into the bathroom and looked. It was a bit bloody, but not much. Just strips of adhesive with a bit of blood on the inside, stuck across my throat like an ultra-modern necklace. I didn’t think it looked that hot, but I was glad my friends were so positive about it.

At first, I didn’t think of it as a scar. I called it the incision. It seemed too soon to call it a scar, and in my mind it still belonged to my surgeon. He made it, after all. It was his handiwork. If this is a grand battle against cancer, I’m hardly the fighter; I’m just the battle ground, he’s the one wielding the mighty sword of clean surgical steel. He made the incision, conducted the battle, and tidied up the theatre of war with some dissolving thread and surgi strips, and called it a day. So at first it was the incision. Distant, belonging to others, a third party location.

Once the surgi strips came off a week later, and I got my first real glimpse of the thing. I was uncomfortable looking at it at first. In fact, I didn’t look at it. The strips came off, my surgeon didn’t offer me a mirror (thank god), I put a scarf over it and left to meet my parents in the waiting room. The first person to actually see it was my friend Mindy, whom I ran into while dropping off some paperwork at work. She said it looked “great”, though of course a little red and swollen. “Great.” I wasn’t sure I was ready to face it at that point, let alone follow my surgeon’s orders of washing it and putting cream on it twice a day. When I finally got home that evening, about three hours later, I did finally look at it. It didn’t look so bad. It had healed far faster than I had expected. It was a long, relatively even red line. There was a very very thin long scab running all the way across it, making it feel slightly sharp. There’s a tiny dimple on one side, possibly a stray stitch, but otherwise it only gives you the slightest feeling that I was pulled back together again by human hands, that slight unevenness that indicates something a bit unnatural. Nothing you can exactly put your finger on. It was then I started thinking of it as the scar.

But it wasn’t my scar. It was this new body part, this extra thing my surgeon gave me. It was external…thing.

It wasn’t easy for me to look at at first. Though once I saw it it was easier. It’s not gory. It’s not bloody. It’s just a red seam.

Some people cannot cope with it at all. They shield their eyes from it, put their hands over their eyes, they would prefer me to keep it hidden from view. As if I’m exposing myself in some obscene way. On one level I understand this, since it took some courage on my part to take the scarf off the first time and really look at it myself. I’m looking at my new normal, my new reality, I’m looking at what is new and what has been lost. I don’t entirely understand why people are so ooked out by looking at someone else’s new normal, however. I’m not dripping blood, I have no gaping wound. There are no visible stitches or jagged edges. It’s very slightly swollen, but not visibly. Is it horrific that I’d rather not keep it swathed in cloth? Is this akin to standing naked in the grass while the commuter train whizzes by? Am I being a medical exhibitionist?

This kind of reaction hurts in ways the incision never hurt. It makes new words pop into my head: disfigured, disgusting, freakish. I seem to have become an untouchable in some circles. I want to ask: do you understand that this scar is permanent? Are you going to avert your eyes every time I come into the room? Or do you expect that I will be a good girl and I will make sure my disfigurement discreetly covered over for the rest of my life? Is that what’s expected of me? Is that the right way to proceed? Do I need to be polite and keep my red line covered up? Forever, or is there a point when I can stop? When it’s no longer red? After a set number of months? I don’t recall reading any etiquette notes on this.

I’m moving toward calling it my scar. Slowly, I’m learning how to claim it.

This is my scar. This picture was taken last week with my cell phone after I put vitamin e on it; it’s actually less red now. And yes, my skin was still a little disturbed by the adhesive. But there it is: there are many like it, but this one is mine.

High Anxiety

High Anxiety

The classic anxiety dream is the one where you go to work and discover that you’re naked, but my classic anxiety dream is the one where you wake up and discover that you’re a full time student with five courses and you haven’t attended any of them, even though it’s halfway through term already.


In general I feel fine, but I get tired very easily.

Two Pills, Three Days, Four Nights

Two Pills, Three Days, Four Nights

The next step in my cancer journey is radiation. For many, this involves a machine and doesn’t sound like a terribly pleasant experience. For me, it will (they tell me) involve two pills, three days, and four nights in isolation. The two pills are radioactive iodine, which is absorbed by thyroid tissue. If you have a healthy thyroid, this would be very bad news, which is why they put me behind the lead walls for a time. For me, radioactive iodine should attack and kill whatever remains of thyroid in my body, including the tissue that remains in the wake of the surgery and any potential seedlings the original tumour planted in other parts of my body (most vulnerable being lungs and bones).

I imagine it like those flesh-eating fish, little tiny ones, who are only interested in a particular kind of flesh (dead stuff). And somewhere in the world (I can’t remember where), it’s de rigeur to put your feet in this special little ponds and these flesh-eating fish surround you, pulling off dead flesh and leaving the living stuff. They clean you off, let you start fresh. They say it tickles, having flesh-eating fish clean off your feet. This is exactly what I imagine when I think of the radioactive iodine treatment. They tell me it won’t hurt at all.

But I will be in isolation for three days, four nights. Once I have that dose, they leave me in a room of my own, with a bathroom of my own, and no one, not even nurses or doctors, come in or out. They will call me to check on me, and my dad is convinced they will have me on closed-circuit tv, but for all intents and purposes I will be alone.

I don’t think they have an internet connection in there. (If ever an internet connection was needed, I would think it would be there.) Apparently people find the isolation the hardest part. My endocrinologist’s office recommends getting the tv hook up. Strongly.

I’ve decided to think of it like a spa retreat. Three days, four nights of mud masks and salt scrubs. The paperwork recommends bathing daily while in isolation, because the radioactivity is excreted through your pores throughout the day. Some patients, they say, bathe several times a day. So I’ve decided this three days, four nights will be a celebration of body washes and exfoliants and smelly shampoos.

I’ll get the tv hook up. But I also need books. Right now the only thing I can really wrap my brain around is young adult fantasy fiction. I’ve read pretty much all of Brian Jacques Redwall books, I read Cornelia Funke’s Inkheart and Inkspell (so relentless! So German!), and I’m just finishing Angie Sage’s Septimus Heap series (Magik, Flyte and Physik), which I absolutely loved. Sure it’s a bit Harry Potter, but it’s sweet and funny and the people are inherently good. Any recommendations? I was considering A Series of Unfortunate Events, but it might not have that general feelgoodness that I’m somehow searching for. I want to love the main characters desperately. I want to admire them while still feeling that they’re human. I hate it when I hate most of the characters in a book. I find it disheartening. I should take Spiderwick, that’s a given; I spent one sickly new year’s eve at Holly Black’s house, and I’ve been meaning to read all the chronicles for ages. Any others? There must be a million Harry Potter spinoffs, right? Please feel free to recommend something. I’m going to need to purchase enough to last me three days, four nights, because somehow I can’t imagine any public library would be too pleased about me taking their books with me into radioactive isolation.

The Angry 1.5cm

The Angry 1.5cm

A week ago last Thursday, I stepped rather gingerly into Mississauga’s Trillium hospital, not entirely free from the denial of what was going to go on once I got there. I took off my own clothes and put on their little gown-smock and little robe; I even put their puffy “slippers” on. I gave the last of my belongings to my mother, with only the elastics tying up my braids to my name. And I waited until they came to get me. A person undergoing this procedure does not get wheeled into the operating room. One simply walks in, surely a very empowering process.

As my surgeon says, “you were fine until we closed the door.”

I sat down on the thin little bed, with a pillow under my back to expose my throat, and hyperventilated. The last thing I remember was the IV going into my hand, the smell of rubber from the mask over my face, and wonderful, sympathetic surgical team telling me they would take good care of me.

The next thing I knew, I was lying in a darkened recovery room (at least, it seemed darkened at the time), feeling like I was sitting by the pool in the sun at a 5 star resort with a margarita in my hand. I had no idea how much time had passed. I went in at 2pm, and by the time I was fully conscious again it was 8pm. Surgery lasted 2.5 hours, and I was in recovery for 4. They kept asking me if I wanted painkillers, and I couldn’t imagine why I would. I knew what they’d done, my throat felt a little rough, but when asked, I told them my pain was a .2 on a scale of 1 to 10. I felt fine. I was told talking would be a strain (and, if mistakes had been made, impossible), but I could talk pretty well. I didn’t want to be shouting or singing, but the voice made it through okay.

I asked the recovery room nurse if we had been formally introduced, and she said no, we had not, and her name is Mary. I introduced myself and thanked her. She was very kind to me. There was someone else in the recovery room crying and asking for help. Mary told me that some surgeries take a bigger toll than others. I spent most of my time in recovery feeling extraordinarily grateful and blessed.

They transferred me to my room that evening, and I met the night nurse, who helped me move from the very comfortable 5-star bed I was in to the even MORE comfortable bed I would spend the night in. She told me I wouldn’t sleep too well that night, because she needed to check my vitals every couple of hours. I didn’t sleep more than 30 or 40 minutes at a time anyway; I was starting to feel anxious about the thing they had done to me. There was a thick dressing over my throat. It didn’t hurt, but I kept waiting for it to. I kept my head as still as possible to avoid hurting myself.

Checking my vitals included: tapping my cheekbones and cheeks, checking my blood pressure, starting at my open palm, and asking if my lips or fingertips felt tingly. Along they way I learned that these are ways to determine whether my calcium levels have dropped radically. The regulation of calcium in your body is control by glands that sit behind a healthy thyroid (called parathyroid glands), and in fear that they had been damaged somehow in surgery, they were monitoring me carefully. At each of these visits my neck was measured; I had a measuring tape draped around my shoulders for just this purpose. The numbers seemed to be going progressively down. Again there were frequent questions about whether I wanted any pain killers. The night nurse, Carolyn, was also extraordinarily kind to me, and finally, at about 2am, brought me codeine and told me, “it’s okay, it’s FREE!”

By about 11am the next morning I was getting pretty bored. They took the top dressing off the incision because it was useless and totally dry. Underneath was a large, oval sticker covering seri-strips (surgical adhesives) underneath. My drain was emptied and apparently there was very little fluid removed by it. The IV was stuck into my wrist, icily reminding me of its presence each time I moved my (left) hand. (Did I mention that I’m left-handed?) I was starving but I hadn’t been cleared for food yet.

At 2:30 the surgeon dropped by and said, “you’re fine, go home.” Though he told me in pre-op that he would know instantly if my thyroid was cancerous or not as soon as he took it out, he was much more circumspect. He wouldn’t say what he thought, except that my lymph nodes were fine. “Call my office on Monday,” he said, “and make an appointment for Friday.”

The nurses, fantastic people that they are, supported me in my terror of having another panic attack by recruiting a team of three to tell me stories and jokes while a fourth took off the oval sticker on my incision, removed the drain tubes, and finally rid me of the much-hated IV. They all deserve medals of valour.

I went home and slept, and discovered that, while I was in no pain from the incision, I had strained every muscle in the back of my neck/upper back in fear of causing myself pain. For the first time, I gave myself permission to roll over on to my side.

On Friday I went to see the surgeon again. He took the seri-strips off and told me to wash the incision twice a day, and put cream on it. “Any kind of cream. Polysporin, vitamin E, whatever you want.” The idea of looking at the incision gave me the creeps, let alone touching it.

The word: they found a 1.5cm malignant tumour, deep inside a larger calcified nodule on my thryoid gland. No indication that it had spread itself around, and as he had indicated, my lymph nodes (removed at the same time) had all come back negative.

“You’re probably cured,” he said, apologetically. “But we like to do the radiation anyway.”

“Sure,” I said. “Why wouldn’t you.” I’ve looked it up. They call that radiation “the magic bullet”. Because thyroid tissue is unique, they can tie the poison to iodine and destroy only remaining thyroid tissue, leaving the rest of you unharmed. Even if, by some miracle, some cancerous material had moved through my lymph nodes undetected and found new home in my lungs, this radiation would cure me.

It was hard news to hear, though it’s good news, all in all. You don’t get better cancer news than this. But of all these months, it was only the possibility of having cancer that I was contending with. Then suddenly I had the certainty.

When I went home I finally looked at the incision. It’s huge. I knew it would be, but my mother didn’t. She couldn’t get over the size of it. 6, maybe 7 inches across. My father calls me “Nearly-Headless Nick”. It looks like evidence of violence. But it’s healing remarkably well; it’s sealed and unbloody, just a long unforgiving new smile across the bottom of my neck. It feels weird and foreign and I don’t like to touch it; it’s as if I’ve just gained a new body part, when in reality I just lost one.

They had no actual evidence of that 1.5cm. They had a well-educated hunch, and some very deft fingers on the part of the surgeon. This incision will heal into a barely noticeable line, and I will have escaped without having experienced and serious physical discomfort at all. For now I’m waiting, a little chilly and a lot sleepy, for the thyroid hormone to seep out of me in preparation for the radiation. Most of the time, I feel pretty lucky.



I suppose the more information you have the more power you have, but at points I feel like the more I know the weaker I feel. This isn’t something I remember learning about when we talked about information gathering and health informatics in library school, though admitedly these were not areas I pursued. I don’t remember anything about people trying to avoid getting more information about themselves; only about alternative routes toward more of it. It might be what they call “information overload”, but I’ve always sworn up and down that I don’t believe in that. It’s not quite that.

It’s as if I have constructed this very careful house of cards, where each card is a piece of information I would like to believe about myself and my own body. I suppose we all have one, more or less; we accept some failings of our bodies, and rely on other non-failings as part of our self-image. We couldn’t walk if we didn’t believe our feet would hold our weight, of that our joints would cease to swing in mid-motion. Each time a health professional comes at me with something that pulls out one of my supports in this house of cards, my careful construction collapses on one side. But I regroup, I rationalize, I see the bright side. He didn’t really mean that, or that’s just a worse case scenario. She doesn’t really know, or she’s just blinded by her specialty and sees what she wants to see. And people help me in my disinformation reconstruction too: It’s the money, they want to see it this way so that they can get more money from your case, or doctors always overreact in fear of getting sued. So then this phantom card sets up where the old one was. The phantom card that I need so desperately to be real. (It might be real, who knows?) And my house of cards stays up, as long as I don’t think about it too much.

So I luxuriate in my disinformation, or my not-quite-what-she-said information, my hopeful information. Google is a wonderful thing; it can go either way, support what anyone, everyone says.

And then I go back to see the people with the charts and the certainties, and they take another swipe at my house of cards. You’d think the farther along you get the less likely these little offhand comments (things like make her an urgent appointment with the surgeon and you’re lucky, this is one of the curable ones or if you have to pick, this is the one to choose!) completely destroy me. I want to be surrounded by my disinformation. Is that so much to ask? I’m not fighting the recommendations, I’m being a good girl and I’m following all the instructions to the letter. I suppose there’s only so far you can go down that path, pretending to humour your doctors. It’s hard to be that pompous. What do I know? There comes a point where you have to believe them. They’re the experts. They sound ever so certain about what it is, and they’re so reassuring about how everything will be okay.

My surgeon says: You’re going to die of old age.

He points out the part of me with the alien cells in it, the little terrorists, and from that point on I can feel it all the time. A constant, dull ache in my throat. Lying in wait. I’d tear it out with my own hands if I could.

But I still suspect that they’re wrong about it. Or, I suspect they’re wrong a great deal of the time, and a portion of the time I feel the utter terror in the belief that they are entirely right. But they have no real proof. Only an educated hunch. Hunches are wrong all the time. In a matter of days they will slice me open, take it out, and know for sure. And then we’ll see who gets the last laugh.