rochelle.mazar.ca

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Phew.

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

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.

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.