Category Archives: Health care

Plan C

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C is for Cookie. And catastrophic failure. And Calgary.

Following on from the drama in my last post I feel somewhat obliged to keep the blogosphere in the loop. I started thinking of this next piece right after hitting ‘post’ on “Limb and Life”. Its title was going to be something like ‘What a Difference a Leg Makes’. I do not yet have the material for said piece.

So. Picking up where we left off: My current prosthetist cobbled a temporary leg together, to get me through while we built and tested the next big thing. This short term leg causes less swelling than any other prosthetic has in the last three years, though I wouldn’t call that a sought-after award. But it is enough to get me by, for a while.

After a long wait, the final solution leg I tried two Fridays previous was the culmination of two previous appointments: a casting, followed by a check socket and a second casting. This prosthetic was built with input from a prosthetist in the USA (I had reached out) who has quite a number of LF-toting clients. This prosthetic was to have been ‘The One’. It was not. Not even close – I took it off five hours after leaving the clinic, knowing full well it didn’t fit. Poor LF had ballooned even in those five hours. I had a look, took a deep breath, and went to bed.

After a fitful sleep I got up early in the morning and had a ‘spiritual awakening’. Which reads far better than ‘had a breakdown’. I called a long-time friend in BC and awakened in his general direction. Another friend was due to pick me up to go climbing. He stopped by and we agreed to meet at the crag. I didn’t say anything about my mood and was tasked with grabbing lunch while he made a quick stop for bolt glue. On my way I called him from the car and asked to meet him at the hardware store. I arrived just in time for another ‘awakening’ and told him I wouldn’t be able to join him that day.

I sat in the car. Since my last post I’ve started to actually talk to friends about my struggle with getting a leg that fits. But I didn’t want a friend. I didn’t want empathy. I was interested in someone who might actually be able to help in a meaningful way. So I called up Jon, my last prosthetist in Canada.

Here’s the thing about my prosthetists. There have only been a few of them, but I have spent days with all of them. And days and days and days with the most recent three – Jon, and then with the two in Australia. They become friends, and the good ones become incredibly invested.

So I call Jon, and he picks up after the third ring. He’s read my blog post and hears the strain in my voice immediately. He tells me to come to Calgary and he’ll have a go. He tells me to not worry, we’ll get it sorted.

A few hours later, I call my current prosthetist to let him know my plan. It’s not an easy conversation. I explain that it is not about him, that I have to go to someone who’s been able to make it all work before. I explain that if Jon fails, then I’ll know that it’s me and nothing a prosthetist can fix by tinkering with the fit. I explain that if Jon can’t make things work then I’m on to the next phase – a serious life reorganisation that will require a long period of time without the need to wear a prosthetic, necessarily combined with a different source of income. I try not to think about what that might look like. Another opportunity for awakening.

I drove home and spent the evening scheming, plotting, articulating, and attempting to keep my anxiety at bay. The current iteration of the plan sees me heading to Calgary in mid-September, with the hope of writing ‘What a Difference a Leg Makes’ in a month’s time. Cross your fingers for me.

Limb and life

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It has been over two years since I last added to this narrative. My silence has not been for lack of things to write about, but rather the topic I felt it most necessary to tackle has seemed impossible to share.

Around three years ago, having thoroughly worn out the legs I’d brought from Canada, I started seeing a prosthetist in Australia. My challenge in finding a suitably experienced prosthetist has always been that the rotationplasty procedure (what I chose in the wake of my cancer treatment to give me the foot/knee articulation I have as an adult) is not performed in this country. In fact, they are performed infrequently enough in other parts of the world that the pool of people with rotationplasties in Australia is miniscule. I know of one other. There are probably a handful of people with a little foot (LF) across Australia. The prosthetist I chose to consult with was based at a clinic in Sydney that had a great reputation, and I knew they had fitted one rotationplasty previously.

My interaction with the clinic in Sydney did not go well. A repair to my existing Canadian-built prosthetic damaged its joints, causing hyperextension to LF, which led to swelling. Up to that point, I had never had any problem with LF in the more than 20 years since the initial surgery. And the new prosthetics they built never fit right – the swelling reoccurred. A reoccurred – despite numerous tear downs and rebuilds the prosthesis’ socket was never adequate. The swelling persisted, both in my toes and on the side of my ankle.

The clinic and I ultimately spent a year tinkering and I spent the same time period getting by. When the prosthetist finally said, “I don’t know what else to do”, I went to see a rehab specialist. After some months of waiting for an appointment, the specialist and his team (that consisted of an intern, resident, physiotherapist, prosthetist, and probably others) considered my case and… shrugged their collective shoulders.

That was when I first lost it, saying, “You’ve got to have something more to offer than that!” The specialist sent me for an MRI.

After five months of waiting on an MRI appointment, the scanned showed swelling of Little Foot’s ankle and over the toes (No sh*t… ? Sigh). No obvious structural damage was evident in the images, although apparently the quality of the image was ‘really poor’. It would have been nice to know that at the time – that’s two and a half hours spent in a whirring tube playing Jumble® with the word ‘Siemens’ that I’ll never get back.

I started seeing a different prosthetist last January. I met him climbing, as one might expect. His professional training was trained in Germany, where rotationplasties are at least performed. He had actually seen a couple of examples of the procedure before mine. And. He is extremely committed.

However, the challenge I present to a prosthetist of course has grown. Poor LF has now been swollen for close to three years. Every time the new prosthetist and I try a different socket the fluid shifts. It’s a bit like chasing a moving target where the difference between a bull’s eye and abject failure is millimetres.

I have tried everything I can think of to reduce the swelling – cold therapy, massage, lotions and potions of all sorts, elevation, compression, inversion postures… the cold and compression seem to shift the swelling temporarily, but it quickly returns when I’m wearing my prosthetic. I’m about to embark on a trial of a diuretic, which I will take while attempting to avoid wearing my prosthetic as much as possible. That’s sure to be a treat – I’ll be producing more pee and need to hop to get around. The final alternative, I suppose, will be to not wear my prosthetic at all until the swelling resolves.

Needless to say, I’m worn pretty thin. When I’m at my best I am grateful –  grateful for the medical resources to which I have access, grateful for my understanding of pathophysiology, grateful that I’m still very mobile, grateful that I can still climb with some ability, grateful that I can still get up and do my yoga practice.

But when I’m not at my best my mind drifts to a future that may or may not come to be. A future in which I need to find another job. One in which my financial security is compromised. One where my independence is under threat. One filled with physical regression as opposed to progression. A future where I cannot walk.

So yeah, when I’m not at my best, I worry this part of the journey is only beginning.

Member Benefits

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Inspiring people in this world – they get pushed at me, or else I tend to get introduced to them. Over the past few years I’ve had the pleasure of meeting more than a few. Which is why I write about inspiration. Same as you, I talk about inspiration because I’ve been inspired.

Recently though, I happened to meet a guy with a humble kind of fortitude that is worth actually introducing.

I met John through a prosthetist in Australia that I visited for an emergency joint repair. The long-term fix required the welding of little bits of metal into the joints. The prosthetist turned to me and said “I could do this for you, but the thing is there’s a guy who lives not far from you who could probably do it better”, as he passed along the guy’s phone number.

I rang up John totally out of the blue, and he invited me out to his home-based industrial workshop. From what I gather, John is a jack-of-all industrial trades and design kinda guy, but without the engineering degree. His workshop is massive and full of all kinds of cool-looking stuff I can’t identify. From my perspective all that matters is that he’s got a TIG welder and he knows how to use it. The shop also contains a number of high-end racing motorcycles and the trailer to haul them around in.

John was in a motorcycle accident involving a car 12 years ago. He broke his back, hips, pelvis, and legs. His right leg was fractured in six places. As he recounted, “they told me I would never walk again, when all they really needed to do was take me right leg off” [under-the-breath chuckle]. They did take his right leg off, quite high above where his right knee would have been.

For the record, he walks. He also works in industry. He asked me if my leg ever hurt, and then went on to explain “…me leg only really bothers me when I’ve had a 12 hour day on a ladder”. He took a pay out after his accident. As a result all of his prosthetic expenses today come out of his own pocket. The obvious solution to this little challenge was to make his own legs. For real. Apparently John shapes his sockets by heating them up, putting them on, and bearing down on them while riding a stationary bike. Or something like that.

Some time ago, he got on a motorcycle again. He now races against ‘normals’ without wearing a prosthetic, rather attaching a platform to the right side of his motorbike to put his stump on. The brakes he moves up to the left side of the handlebars. He swims and bikes as part of his training. He was a bit under the weather the day I first met him: “You know, I’ve been celebrating the past few days because I won me last race. I’ll tell you something, it makes guys sit up and pay attention when they get beaten by a guy with one leg.” [that under-the-breath chuckle again]. His season just recently finished. John ranked second…Nationally.

One of the best things about having 1.5 legs is that I have an excuse to call up people like John. I’ve found that most people with artificial limbs are pretty forthcoming about how they manage to do what they do, I suspect because of all the often solidary trial and error one must undertake to figure out the technical stuff. It’s a cool little unofficial club. I mean, let’s be real, the cost of membership can be pretty high. But if you happen to find yourself standing in line, waiting to enter, I would suggest seeking out the members like John.

A Primer On Prosthetics

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A long-time friend who has been following this blog asked me: ‘Do you have the same walking prosthetic that you did back in Guelph? Or did you upgrade?’

His question made me think that perhaps I should write something about the nuts and bolts, if you will, of wearing a prosthetic.

I started patronizing Alberta Artificial Limb when I moved to Calgary in 2007. The process whereby I chose a supplier consisted of poking around on the Internet and making a few phone calls. When I spoke to Jon on the phone, he told me his company had a number of young people as clients, as well as a few people who were really active. Importantly, they had fitted a couple of rotationplasties. (It’s not unheard of to talk to a prosthetist that has never heard of a rotationplasty.)

I have no handy analogy to describe the process of changing prosthetists. Imagine that every shoe in the world, including yours, had to be custom made. Then imagine that there are maybe five dudes in every city of a million who can make them or repair them. That’s right – they can take as long as they want and they can charge what they want for their time and materials, and if it’s not working right…

No, wait. Think of it this way – imagine that you had to have your car measured and custom fitted by some local guy. The price is about the same. But then you find that the steering wheel always pulls you toward the gutter. And your passengers tell you that the seats are too stiff. Or, maybe it’s like getting married (I wouldn’t know, and no, please don’t email about that).

Anyway, it’s impossible to know until someone makes you a limb if it’s going to work out. You can talk to the prosthetist’ other clients (after you’ve practiced pronouncing it first) and look at some other limbs they’ve built, but each client is unique and I am very VERY hard on my prosthetics.

If I’m really honest with myself, this need to dedicate time and money to getting my prosthetics ‘right’ is what I find most difficult about having an artificial leg. The process of having new prosthetics built and current ones repaired is hugely time consuming. I keep two legs going at one time (you know what I mean) to ensure they’ll each last as long as possible. Which comes to around three years. The last time I had a new set built I was spending much of my time in Victoria, BC. I was still Jon’s client. I was making trips back and forth between Victoria and Calgary at my own expense. Each trip lasted at least a week, and we always ran out of time. It took a year to get our last set right. Jon had to do at least three teardowns and rebuilds.

Then there’s the expense. Bills for those last two came to somewhere in the neighborhood of $30,000. Prosthetics are an ongoing expense for me, and prosthetics coverage strongly influences where a starving post-doc is willing to live and work. Right now, though I’m currently in Australia, I’m still a Canadian resident and taxpayer and therefore most of my costs are still covered by Canadian assistance. However, these services and benefits must be delivered in Canada, which means I’ve become better at doing my own repairs and Jon has gotten real good at checking my alignment over Skype.

As in most war zones and locales suffering from civil unrest, prosthetic devices are not considered medically necessary in Canada. Which means that coverage is incomplete and not inclusive and varies by province. I’m fortunate to have ongoing help from CHAMPS, because otherwise I could be on the hook for thousands of dollars, or forced to accept prosthetics that won’t allow me to function to full capability.

Look at it this way – if I’m going to be your veterinarian, and an international animal health researcher to boot – give me a leg up – or I’ll let the old lady up your street poison your dog, and McDs feed your kids’ tainted McNuggets.

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.

Seminal Moments

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We all have them – those points in our lives that we consider in hindsight and go ‘wow, my life would have been completely different had I not…’

One from my recent past that comes to mind is the day I walked into my first Ashtanga Yoga Mysore class taught by Jeff and Harmony Lichty.

Hindsight, as they say, is 20/20. To be clear, I had no idea what I was getting into.

What led me to yoga was years of hip pain. Years of experience clouding, constant, hip pain. I had tried everything – chiropractic, massage therapy, active release, acupuncture. All modalities alleviated my discomfort to some degree but the relief was always transient. There had been times when I was having something done to my hips two or three days a week just to keep the discomfort manageable.

When I moved to Calgary in 2007 I had limited health insurance through the university and therefore I knew that any treatment I pursued was going to be paid for mostly out of pocket.  And I was tired of spending my time going back and forth to appointments. I had begun to think about what was going to happen to my hips as I got older and figured it was time to try something else.

At the time I had barely dabbled in any kind of yoga. I had followed a couple of DVDs, been to maybe a couple of led classes, but that had been it. I did what everyone does in this day and age when I moved to Calgary – I consulted the Internet and found Yoga Shala Calgary. I read a little bit about Mysore style yoga, looked at the schedule and thought ‘Oh, that will work. Classes are in the morning so I can go to the gym and study in the afternoon.’

So one morning in September 2007 I walked into Yoga Shala Calgary and met Jeff and Harmony. At that point they were teaching in Calgary having returned from another stint in India and both had been authorized by Shri K Pattabhi Jois.

My earliest impression of them was that they did not see my prosthetic as something to overcome, they just saw what was possible. That first day they asked for a show and tell and were enthusiastic and excited about the fact that I had come in. I did not get a whiff of uncertainty or hesitation from either of them, and that is an approach to teaching and learning that I think many would say they try to adopt but few really achieve. And so I started going.

It took some time, as I think it probably does for most, to incorporate my yoga practice into my routine but after a few months I was pretty regular. And I can remember when the hip pain really started to change. Toward the end of 2008 I spent a month in Goa practicing with Jeff and Harmony. Before travelling to Goa I had been in Sri Lanka for two months conducting research as part of my PhD. Prior to that time, a three-month stretch with no treatment on my hips would have left me in agony. But for the first time in years I wasn’t. I practiced close-to-daily on my own in Sri Lanka and then six days a week in Goa and I was hip-pain free.

I still have flair ups from time to time, but they are very seldom and nothing like they used to be. And while the lack of hip pain has been life changing and truly a blessing, yoga has also brought many wonderful experiences and connections to my life.

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”