Monthly Archives: February 2008

How can I keep from Singing?

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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.

Exhibitionist

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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

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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.

Two Pills, Three Days, Four Nights

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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

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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.