Category Archives: Cancer

In The Beginning

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I started climbing about the middle of 2007. I was working in the interior of British Columbia for a brief stint, and started going to a local climbing gym. I then took a two-day ‘Introduction to Outdoor Climbing’ course in Penticton at the end of that summer. After that I moved to Calgary and started hanging around one of the several local climbing gyms there. Same sort of deal as learning any individual sport as an adult – It could as easily have been tennis or golf lessons.

During these beginning phases, I was cramming my walking foot (the plastic one) into a climbing shoe. I know now that a foot designed for climbing is a different thing than a foot designed for walking, but at the time it was the available option. I’d never met anyone without a leg who climbed – I hadn’t met that many climbers, even and I simply assumed I was one of very few… (we prostheletizers can do the ‘assumption thing’ as easily as anyone).

I spent about a year and a half thrashing away, not being able to do much with my leg foot apart from employing it as counter balance and taking small steps onto bookshelf-sized holds. After one particularly frustrating day, I came home and Googled ‘prosthetic climbing foot’, or something similar. One of the top hits I received was a link to a thing called The Eldorado Z-Axis Climbing Foot. Its description mentioned Malcolm Daly and Paradox Sports. I decided to drop Malcolm an enquiring email and his response was to invite me to Ouray, Colorado to go ice climbing. In six weeks. So much for calculated career planning.

Meeting up with the Paradox crew in Ouray in the spring of 2009 was one of those eye-opening encounters. I think one of the consequences of limb loss due to cancer is that you end up in the ‘cancer crowd’, as opposed to the trauma-leading-to-missing-body-parts-or-loss-of-function crowd. They’re really quite different scenes. The majority of childhood cancer survivors reach the other side with limbs intact, and once you’re over the chemotherapy, I think there’s a tendency to move away from the community, as part of your own recovery process. As a result, I knew very few children without limbs during my cancer treatment days, and none afterwards. I attended one Champs seminar (think weekend health retreat only replace the meditation sessions with artificial limb show and tell), but I think I was too young and wrapped up in the whole treatment process to keep up the connections. By 2009, I was feeling pretty alone with my whole one-legged process.

When I went to Ouray I was all of a sudden immersed in this community of people who climbed, skied, cycled, ice climbed, snow boarded, paddled… They were getting out there. And while some ‘normals’ were invited along for the ride, most Paradoxians were missing something, whether it was a limb, a few fingers, or use of part of their body. Together we climbed frozen waterfalls. We ate. We drank beer out of somebody’s leg. All the usual climbing trip shenanigans.

They’re an inspiring crew. If you ever have the opportunity to go to one of their events I would suggest jumping on it – You’re likely missing more than they are.

The Cat Killer

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Years with a prosthetic leg have provided me with some interesting encounters with curiosity.

During the end of high school I was a lifeguard and instructor at the local swimming pool. The first day of class was always an experience. From that vantage point, curiosity seemed to win out over the indoctrinated social politeness until about the age of 5 or 6. Frequently, the first class with five-year-olds would involve a brief circle of question and answer that went something like this:

Kid: “What happened to your leg?”

Me: “I was very sick when I was a little girl and the doctors had to take it off. They gave me a robot leg instead.”

Kid: “Oh, okay.”

And that was it. No further explanation required, and afterward the kids never seemed to take much notice. Sometimes there would be no words, and then one or two kids would slide across the circle to touch it, looking to me for permission that I always gave. I vividly remember this one class when the kids sat down in a circle and the little boy to my left slid right up next to me so that his right leg was touching my left leg, looked me in the eyes, and rested his hand on my leg without saying a word. He stayed there until I got the class into the pool.

I wrote about the curiosity of children in the post ‘One Leg, Two Eyes’, and how the response of others can shape that curiosity. One of the consequences of having a visible history of trauma is you see, on a social level, what we do to shape, and restrict, curiosity.

Curiosity has a cultural element. In places I’ve worked in Southeast Asia, including Sri Lanka, India, and Indonesia, curiosity seems to be something that is embraced, or at least not discouraged. I go for massages from local women because it gives me an opportunity to talk to them, and put money back into the local economy in exchange for a service (as opposed to stuff, see the post First World Problems). Without exception, all of these women have asked me what happened to my leg. The last time I was in Indonesia the masseuse put her hands on my leg while saying, “I’m sorry, I’m sorry, I’m sorry.” She ran her hands the length of my leg, and it was clear she had never seen anything like it before. Her curiosity was palpable, and I sensed there were many questions she wanted to ask. It seemed that only her English held her back.

Compare this to a recent encounter I had with a woman from work, here in Australia. We’ve known each other for months, and I’ve been to her house a number of times. She came to drop something off at my house, and I answered the door in shorts and a T-shirt. We had a conversation standing on the front porch, while she clearly made an effort not to even glance at my prosthetic leg. There’s no way she didn’t notice. She drove away without saying a word, and we’ve never discussed it since.

Humans are naturally curious beasts. Friendship and intimacy develop from mutual exploration into the human experience of others. I believe some of our ability to connect with one another has been lost in Western culture, and that this is, in part, because of the way in which curiosity gets smothered in favour of politeness, or social correctness, or our fear of asking too much.

Don’t Buy the Big Bag of Dog Food

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When I was in Vet School, I had this professor who would occasionally drop the phrase “Don’t buy the big bag of dog food”. He didn’t intend his comment to be insensitive, or EVER used with clients. Instead he employed it as a tool to link specific disease conditions with a prognosis. For the record, his expression had the intended impact.

This came to mind when I was having a conversation with Cathie Coward, the woman who took the photographs of me you might have seen in my posts ‘Function / Form’ and ‘Our Cancer Lexicon’.

Cathie and I recently got together while I was in Hamilton visiting my family. We hadn’t been in touch for many years, until I emailed her about this SGL blog project. She and I agreed that perhaps some ‘twenty years later’ pictures would be an interesting undertaking, so we spent a day out together, during which I got on a climbing route or two and put myself into a few yoga postures. Cathie also recorded a bunch of audio for an article that was to be published in the Hamilton Spectator.

As a starting point to our conversation Cathie had me flip through Kate’s Story – something I hadn’t done in a very long time. She mentioned a picture I couldn’t recall, from a bone scan that was done around the time I was diagnosed. She recounted showing this image to a physician friend of hers while telling him about the Kate’s Story concept. She told me that when this man saw the image he advised her “don’t get too attached to this little girl…” the human medicine equivalent to “Don’t buy the big bag of dog food”.

I was taken aback when she told me about this conversation, and even more so when I looked again at the image that I hadn’t seen in so long – it clearly shows just how extensive the bone cancer was in my left femur. As a veterinarian today, my interpretation would have been similar to that of the physician back then.

If I think back I can get a handle on the idea that I walked a tenuous line during that period. There were times when I was really sick from the chemotherapy, and I suspect now that the situation was quite precarious.

Unexplainably, back then, the end of my life at a young age never really occurred to me. Though the experience left a lasting impression. Today, I feel acutely aware that, while life is not short, time is indeed quite precious. It makes me tap my one foot when someone is late for a date.

Alright, until next time… For the truly rabid fan-folk, here’s a link to the article I’m talking about and a few recent pictures that didn’t make the cut to the newspaper page.

 © Cathie Coward

 © Cathie Coward

 © Cathie Coward

  © Cathie Coward

AWKWARD Moments

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So yeah, I’ve gotten pretty good at keeping my artificial leg under wraps. I don’t feel nearly as compelled to hide it as I used to be, but there are still those in my daily life, particularly at work, who I’ve never raised the subject with. When they haven’t made any comment, I can only assume that they don’t know about ‘it’*.

One of the consequences of this charade – if you will – is that either the situation arises, or I develop a close enough relationship with someone, that I feel it’s necessary to tell them. Almost always, I feel apprehensive when this time comes.

It is rare that I get a good lead-in. I mean really, how often do any of us think to drop the question ‘any major childhood illnesses or artificial body parts we have yet to discuss?’ Since the topic is something that doesn’t naturally come up, I always feel like I’m raising it out of the blue. My default opening is ‘there’s something I want to tell you…’ Yeah, I know – I’m setting myself up for awkward out of the gate. I’m open to suggestions.

Then there’s the looming discomfort about what reaction my revelation is going to receive. Generally, these fall into one of three categories; The first is the “I know”. The second being the “oh…”, followed by a look of confusion, followed by awkward silence. I still don’t know how I’m supposed to dispel the tension.

The third category is the “…Really?” My favorite variation on this theme coming in the form of “you’re joking!”…which I can’t help but find entertaining. Who makes that joke?

(I have contemplated making that joke: “No shit. After I lost the limb in a freak shark accident, I put myself through grad school by contracting my leg to mule contraband. No border guard wants to touch it.”).

Sometimes what follows is a bit of Q & A. Other times the conversation moves on to a different topic. Generally, I don’t volunteer many details. I believe if someone is interested, they’ll ask.

I struggle. I am by nature quite introverted. Decades on, telling someone about my artificial leg still feels like I’m opening up a part of my life that I’m very private about… or was private about, until I began this blog.

*Do I say ‘it’ or ‘them’ as I’ve got more than one leg to wear?

I’ll Be One In A Million If You Will Too

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For some reason, one in 50,000 is a number that has stuck in my head over the years. When I was diagnosed with Ewing’s sarcoma this was what my family were told was my chance of getting the disease. (What can I say, other than, “Thanks, medical profession, for quantifying the rarity of bone cancer in children”?)

I don’t remember in which context I was told the number, just the number itself. My mom actually remembers the number as being much, much larger. In reality the precise value of the number is irrelevant, and it’s only the magnitude that means much. Today, as someone who studies disease in populations, the idea of telling an individual or family such a figure seems strange. But maybe someone asked a doctor, and this number was the answer given.

The thing about chance, or more accurately risk, is that it is only really meaningful if you haven’t yet developed the outcome. Maybe you can change the risk of an outcome by avoiding certain known ‘risky’ behaviours such as driving or smoking, but it is only in very rare cases that the risk of an outcome can be eliminated. Or the risk factors may be things you can’t change, like sex or age. But, the thing is, quantification of risk becomes somewhat meaningless once you’ve developed the outcome. You’re ‘The Chosen One*’, whether you like it or not.

I tend to think about the chance moments in life as a series of decks of playing cards. We have a measure of control when we’re drawing the card, but there’s always a large element of chance to the whole process. And when it comes to the risk of uncommon things happening, in the vast majority of draws from the deck the uncommon doesn’t happen. Irrationally, it’s this same fact that serves as reassurance when a person goes swimming in the ocean in which somewhere there are sharks.

But sometimes what is very uncommon does happen. To be uncommon, but still occur, it has to happen to someone. It’s this fact that keeps the lottery tickets selling, though it contradicts the logic employed above.

At some point in life, something uncommon happens to just about everyone. And when thinking about that possibility, in conjunction with contemplating how we will respond to it, well, the possible futures are both endless and enriching.

 
*I’m always reminded of a quote from the original Buffy the Vampire Slayer movie. ‘Right. I’m the chosen one. And I choose to be shopping’.

The Black And Whites

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The pictures I’ve been posting from the time when I had cancer have a story behind them, namely Kate’s Story.

When I was at the beginning of chemotherapy treatment I appeared in a feature series of photos in the local newspaper, the Hamilton Spectator. A publisher noticed that initial piece and they approached the photographer, Cathie Coward, and my family about turning my experience with childhood cancer into a photo essay and book. This decision was one I made a long time ago, but I remember agreeing without too much deliberation. I think the idea was to create a resource for families with children diagnosed with childhood cancer. At the time it seemed like a good idea.

Over the course of the year I underwent chemotherapy and surgery Cathie Coward photographed me at all stages of the process. She was there during the times in hospital when I was being loaded up with chemotherapy drugs; she was there for my last morning on two legs; she even came to school with me on my first day back after surgery.

  © Cathie Coward

I very seldom look at the pictures – finding the ones to include in this blog has meant flipping through the images for the first time in years. And I have never read the text of the book.

There is a quote from an essay by George Steiner titled ‘In Bluebeard’s Castle’ that reads ‘It is not the literal past that rules us, save, possibly, in a biological sense. It is images of the past.’ My memories of that time are faint, and when the event I remember has been captured in one of the photos I’m not sure if my memories are of the event itself, or of that image, carried to the present.

When I look at the pictures I have a hard time seeing the girl in the photos as me. And really, she’s not me; the photos show the image of the girl who grew up to be me.

I initially chose not to read the book because it seemed unnecessary – I knew the arch of the narrative, and by the end of the chemotherapy I was done thinking about hospitals and childhood illness, and its impact on families. I will never read it now because of the fragility of memory – I don’t want my reading of the book to muddle for me what I remember of that time.

Function / Form

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Kate changes dressing_1 © Cathie Coward

As you can see in the picture above, I do not have what you might call a ‘normal’ amputation.

I was diagnosed with Ewing’s sarcoma at the age of 11, when a tumour was found at the end of my left femur – the long bone of my thigh – in the growth plate closest to my knee. Soon after diagnosis I started chemotherapy, and was given the ‘choice’ between a joint replacement and an amputation. Specifically, a rotationplasty.

A rotationplasty is a salvage procedure that is done to save two joints, and leave the patient with a functional knee. Essentially, two incisions are made, in my case one high on the thigh and one just below the knee. The middle bit gets discarded, and the calf and ankle are rotated 180 degrees and reattached so that the ankle becomes a functioning knee.

Even now, I look at this picture and go ‘Man, that does look weird’. And it does – it still looks weird even to me, and I’ve had 20 years to adjust.

But, I’ll tell you what: It is functional. Because the foot is a naturally weight-bearing part of the body, I can wear my leg for 20 hours without issue. I’ve hiked up mountains. I’ve biked up mountains. I can stand for as long as I need to. I can surf and climb and practice yoga. And work as I need to.

When I had to make the choice between knee replacement and rotationplasty – at the ripe, old age of 11 years* – it was surprisingly easy. Shortly after I was diagnosed, I happened to share a hospital room with a girl who’d had a bone tumour in her knee. Following joint replacement, she was back in for yet another surgery. When you undergo this kind of intervention at a young age, by necessity they remove the growth plates around your knee. As a result, the affected limb grows much more slowly. This young woman was back in hospital to have her long leg shortened and her short leg lengthened… again. I could see she had difficulty walking, and that her shoes had to be markedly different heights to accommodate her leg length difference.  Around the same time, I met a young man with a rotationplasty whose family my mom had contacted through a local charitable organization. He had needed no additional surgeries, and was cycling and playing baseball regularly. Though I was only a couple of months into chemotherapy I’d had my fill of hospitals. The choice seemed obvious – I wanted function over form.

But, it’s not that simple for everyone. I recently met a mother whose daughter has a congenital condition that might best be treated with a rotationplasty. Her alternative is to leave the limb as it is. When I met this mother – I did not meet the daughter who was not yet three – I was quick to tell her how able I was, how functional I was, how happy I was with the outcome, and how I wouldn’t change a thing. Her questions focused around skirts and boys.

 
*The G. Gordon Liddy offering of “I’ll break your legs or steal your girlfriend – your choice, Mister”

Our Cancer Lexicon

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I believe that the language we use to describe the human experience shapes our perceptions of that experience as much as we shape the language itself. One of the areas in which I find the use of language quite disturbing is when we talk about cancer.

As an example, Jack Layton’s death from cancer was much talked about in Canadian media. The CBC ran an obituary entitled ‘Jack Layton’s legacy as a fighter’.

When he announced his diagnosis to the media Jack Layton himself said ‘I’m going to fight this cancer now so I can be back to fight for families when Parliament resumes.’

Now granted, my first-person experience with cancer was a long time ago. I had a total of 10 months of aggressive chemotherapy with surgery falling somewhere in the middle. Despite the passage time, one thing I am certain of is that the experience never felt like a battle, a fight, a war, a slugfest…. You get the idea. What I do remember is that when you get a diagnosis of cancer you are immediately swept into this torrent of events over which you have no sense of control, particularly as a child. In my case, the pathologists needed to argue over what type of bone cancer I had which meant there was a brief interlude between diagnosis and onset of treatment. During this time I can remember thinking about how my hair would fall out: one of the ironies of having cancer as a child is that you have no frame of reference for how bad the treatment is really going to be.

I do not remember anyone asking me if I wanted to pursue treatment. As a child, it was not my decision to make. Perhaps my parents were asked but it is one of those decisions around which you have little choice if you hope for your child to survive the illness.

In the case of a battle or fight or war at least one player has a choice about whether or not to pursue conflict. In the case of cancer, it is not like the cancer is making some sort of decision. And as the person it affects you are at the mercy of the disease in terms of the choices you have available.

Also, in the case of conflict I imagine there is an adrenaline rush, the sense that you are taking up some significant challenge or meeting a foe head on. I can tell you, I never felt like that. There was no rush. There was a sense of powerlessness. There were the tears on the days that I had to go to the hospital to be injected up with chemotherapeutics. I remember the nurses coming into my room in full isolation garb with the next bag of chemotherapy to be hooked up to the IV pump. Does that sound like a battle, or a fight, or a war, to anyone?

 © Cathie Coward

I think one of the major repercussions of the way we talk about cancer being a fight is that it implies that there are winners and losers. It suggests that on some level, if you die from cancer somehow the cancer has ‘won’ and you have ‘lost’ the battle. It ignores the fact that when you die the cancer also dies. It also implies that those who die of cancer do not fight as hard or as bravely or as fearlessly as those who survive.

If the experience of having cancer is to be viewed as a battle then the person with it is merely the landscape – that’s the best analogy that I have been able to come up with. On one side you’ve got the doctors, and their arsenal of drugs and treatments and symptom relievers and other modalities, while on the other side is the cancer. And the person with the disease is the landscape on which the battle goes down. The best you can hope for is that the landscape comes out the other side reasonably unscathed. And that after time to heal and rest it starts to look like what it used to. Regardless, the remnants of the battle remain and in many instances the repercussions of the fight that was waged become part of the landscape. And then there are the unfortunate instances where the landscape never recovers. But really the landscape has very little to say in the outcome and can only hope to see the other side of the fight.

The “D” Word

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At the age of eleven I was diagnosed with bone cancer. Treatment required a surgeon cut off part of my left leg. I’ve grown up wearing prosthetics, and today, at 31, they’ve become part of my normal. Yet in spite of this lengthy period of adjustment, I still choke on the word ‘disability’.

I avoid uttering the phrase ‘I am disabled’. I do not like attaching the “D” Word to myself. If necessary, I try to be careful to say that ‘I have a disability’. I’m prepared to to acknowledge that I have a disability, but I am very resistant to the idea that it is central to my person.

The Oxford English Dictionary defines the prefix ‘dis-‘ as ‘denoting reversal or absence of an action or state’. It defines ability as ‘possession of the means or skill to do something’. The World Health Organization’s definition almost makes me gag: ‘Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.’ I’m left with this sense of being discredited and dehumanized as a result of a physical trait that I cannot change.

My problem with the “D” word is the emphasis – it creates identity through that which is not. This conflicts directly with the way I approach living. I look around and see endless possibilities.

Yes, many things require persistence and a bit of brainstorming, but usually I feel more limited by perceptions of my prosthetic, and my fear that it will be perceived as a weakness or a fault, than by the prosthetic itself.

None of the accepted synonyms are any better. My good friend Malcolm Daly likes the word ‘gimp’. In fact, he often refers to ‘gimps’ and ‘normals’. I must admit, I was initially uncomfortable with the idea of being a ‘gimp’ but I have come to prefer the word to ‘disabled’. However, I think it is unlikely that ‘gimp’ will enter into common usage in the English language.

Let’s face it, saying ‘there is a physical part of me that deviates from what society defines narrowly as normal’ is a bit of a mouthful, and I have not been able to come up with a decent alternative to the word ‘disability’.

The “D” word, and to whom it applies, needs to be reconsidered. Let’s start that process now.