Prosthetic Fitting

Teetering on the Precipice

By on September 7, 2016

Dana pounds amputee leg fittingYou know the sense of anticipation you have when you sit in a roller coaster car as it slowly ticks toward the top? I don’t mean one of those baby coasters – I mean a real thriller, like the massive ones at Cedar Point. The ones where you can taste the fear. I’ve always found it ironic that people are willing to pay money and wait in incessant lines filled with way too much PDA and gum on the walls all for a rush that lasts just a few minutes. And sometimes we aren’t even sure if we’ll like it – we’re literally terrified. But once you’re belted in, and the not-so-cheerful teenager pushes that button that sends you on your way, there’s no turning back. No safety button. No emergency exit. Just the slow and steady climb to the Precipice.

Sometimes you don’t need a roller coaster to bring you that close to the edge. I am in Florida. Alone. I am teetering on the Precipice. And I cannot believe that I am still struggling with my mobility. While my cancer has improved over the past several years, my ability to move normally, and painlessly, has slipped backward. Particularly in this past year. As an above-the-knee amputee, I have tried multiple prosthetics created by various teams across the country, but we just cannot seem to match the device to my body.

The struggle is almost unbearable. The prosthetic teams give it everything they’ve got, trying new systems and new ideas, all to no avail. It seems like I have slipped backwards in my mobility. Maybe I’m just not meant to be the marathon runner I set out to be before – and then again after – cancer took my leg from me. There are times when I begin to slip into a deep valley of depression and apathy – the lowest point on this roller coaster. Perhaps cancer is my biggest cross to bear. Maybe I should be flipping grateful that I am simply still here. Why am I whining about not being able to run? Or walk for that matter?

Is it because I cannot have it that I want it more?

No. I began this quest 17 years ago. I was training for a marathon when I discovered my cancer, known as Desmoid Tumors. I am a Girl, Interrupted. But I am also that annoying person that absolutely must finish a book regardless of how boring it is just because I must finish what I start – or die trying.

But the marathon isn’t just about finishing something I started. My quest for 26.2 has turned into a metaphorical journey beyond my wildest dreams – and my most terrifying nightmares. I have Stage IV cancer, one leg, and some kind of crazed, dog-with-a-bone, possessed drive to run a marathon. The quest started at age 26. Now I’m 43, and I am still trying. And I will stop at nothing to make this happen.

This is why I am here in Florida. Alone. Again. It is September, and my sixth wedding anniversary is on Friday. Jim is more than 3,000 miles away. We are willing to make any sacrifice to make this dream come true. Except along the way, sometimes the dream to run morphs into a simple wish to walk again. I have struggled with prosthetic devices to the point that my pelvic girdle and spine are showing battle scars. I have lived in Oregon for a year and still have not gone hiking. Or to the beach. I cannot even walk around my neighborhood.

After another disappointing failed attempt at building an adequate prosthesis, I’ve made a final Hail Mary attempt. I reached out to a prosthetist and old friend all the way across the country. He happens to be the guy who makes Winter the dolphin’s tails. (Yes, those movies are true stories, with the part of Dan being played by Morgan Freeman.) Dan didn’t know that after having my leg amputated – which was supposed to rid me of this disease – my cancer had returned. He was shocked to hear how much I had been struggling.

I told Dan how devastated I was that I would not be able even to walk in The Desmoid Tumor Research Foundation race at the end of September. For the past two years, I had actually been able to run this race in my blade. Now, I was hoping to make it in a wheelchair. Dan wouldn’t listen to me talk about what I would be missing any longer. With some strong words of encouragement, a plan was hatched for me to return to Florida for one last try. ONE. LAST. TRY.

I have been terrified to travel on my own. My mobility has been so comprised; I am far from independent. But I made it. We started making my new leg on Tuesday; I’m writing this on Wednesday, and I’m going to get my new leg tomorrow. My last leg took six months to manufacture and this one has taken 48 hours. This is nothing short of a miracle for a thousand different reasons. So much so that it has allowed me to dream an even bigger dream: What if the fit and alignment work so well tomorrow that we are able to get me WALKING!! What if it fit well enough that we could begin work on my running blade? What if I could actually wear my running blade for the race? What if I could RUN in the race? Up I go again to the top of that roller coaster.

Tomorrow at 9 a.m. I go try on my new leg. I am so nervous, afraid, terrified, excited, thrilled, anxious, happy, and hopeful that I cannot sit still. But I must. Until tomorrow. I pray tomorrow I will regain my mobility and feel the glory of walking again. But until then, I am literally teetering on the Precipice.

dana-carbon-fiber-leg-and-crutch

You can also follow my journey on You TubeFacebook, and Instagram.

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6 Comments
  1. Reply

    Lisa Collins

    September 8, 2016

    Heartfelt, heartbreaking, and beautifully written. I’m so proud to know you – for many reasons, but high on the list is your willingness to share your journey. Praying for your 26.2!

  2. Reply

    Steve

    September 8, 2016

    Don’t generally pray for things, per se… But am making an exception in this case. Best of luck/all the best, Dana. ??????

  3. Reply

    Sue Stewart

    September 8, 2016

    I’m on the journey with you!

  4. Reply

    JC Stamler

    September 8, 2016

    Dana – You an amazing human being and an inspirational for all of us. I can’t wait for you to write about how you crossed that marathon’s finish line.

  5. Reply

    Amanda Hoffman

    September 9, 2016

    Your honesty throughout this journey has been so inspiring. Bad days are bad days, and good days are just that. No pretending either way. Sometimes you get knocked down for a while, but you always get back up. Your resilience has helped me shake things off when I’ve been on my own precipices with this disease. Just know that no matter which way you fall, we’re all here to catch you, love you and cheer you on. Thank you for sharing your story and wisdom.

  6. Reply

    Lisa

    September 14, 2016

    Dana:

    I love you! I’m so glad you’re so open about this journey. I am so proud of you and your parents are so with you. Watching you shine through the pain and hurdles. We are with you in Canada xo

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