Marathon Training

The Perpetual Race

By on October 14, 2016

Dancing for joy at the DTRF race in Philadelphia in September.

Time really flies. I cannot believe it’s been nearly three weeks since the Desmoid Tumor Research Foundation race. The feeling of euphoria is still tangible and propels me through my day. I have been walking like a maniac around our neighborhood, each step closer to my goal of… so many things. One of them being to sit still long enough to write down how I am feeling. When I finally settled in to write this post, I had a weird sense of déjà vu – and realized I had already written all about it. It was back in 2014, when I ran my first race in my blade.

Of course, so much has changed since then. My Dad died a month after that race. My mobility declined for two years, even though my cancer improved. My mind followed my body into a slump of depression. But that was then and this is now. And after all that my network of support and I have been through, the sense of gratitude for simply taking two steps on our own is enormous. Forget running. Forget walking. Let’s just be grateful we are here.


There are so many we have lost along the way that would give anything just to be present. Present to experience the euphoria we felt after last month’s Running for Answers 5K race. Honestly, we never want it to end. It’s like the best concert, wedding and family reunion all wrapped up in one. So during this past race, rather than being so focused on the finish line – and literally racing through the course – our team walked with a spring in our step and joy in our hearts. You see, it’s not a race after all. Once you realize – and I mean truly REALIZE how precious each moment in life is – you slow down. You can’t help yourself. You stop focusing on the finish line and start appreciating the present. I mean c’mon, why are we in such a rush to race to the finish?


Desmoid survivor photo 2016.

Today, I encourage you to step outside of the haggard pace that we all keep. Be in the moment. Read my post from two years ago about the Seas It race day in New Jersey, which I’ve pasted below. Tell someone you love them – because we’re all racing toward the finish line, whether we want to or not. Open the door for a stranger. Say hi to someone in an elevator. Appreciate any moment of gratitude you feel. It’s infectious to both you and those that are lucky enough to relish the experience with you. Keep practicing these small moments throughout the course of the day. Before you know it, you, too, will have slowed the pace of your race – whatever that may be – and joined me in the euphoric gratitude of today.


Seas It Race Day – July 19, 2014

For most people here, this race is all about charity and supporting the wonderful people who founded this organization. For me, it was only my third race in my lifetime – and my first in my running blade. I could not believe this day was actually happening.

Fifteen years ago, while training for my first marathon, I discovered a rare cancer in my leg. I fought like hell for nine years to hang onto my limb, but when given the choice between my life and my limb – well I am still here and my leg isn’t. It wasn’t that hard to choose once I put it in those terms. My mantra as I went through my amputation? Focus on what you will be able to do, NOT what you won’t be able to do.


Hold someone’s hand.

As funny as it sounds, I would regain more mobility once I had my leg amputated and the ability to resume my mission to run a marathon. I called it my LIBERATION surgery.

It took several years to recover from that surgery and then learn how to use my new leg. First, I had to master walking, then running. Seriously, I was like a toddler, except that the ground is a lot further away and as adults we are jaded with fear.

I fell more than a few times – and injured myself pretty severely along the way. When they came out with El Toro at Six Flags amusement park in New Jersey, I figured it was the best way to get my rush if I couldn’t run. And after riding the coaster several times, I realized what the medical term being “asymmetrical” means – I ended up breaking my back during the ride due to the G Forces. Have you ever seen an above the knee amputee in a Jewett Brace? Transformers in the flesh.


Be in the Moment.

It took about 6 months to get over that and then – finally! – I was ready to get fitted for my first running leg. But this is not something you just go buy from the store – and insurance generally does not cover additional prosthetic devices. As a matter of fact, it will only pay for your prosthetic leg or a wheelchair. (What would I use at night? Or to shower? Or when I am injured!?) IT WILL NOT PAY FOR BOTH. As if those are optional items.

Getting a running leg meant getting a donation, which required writing a grant AND getting the grant. But I got one. And the first day I tried it on… I tore my Achilles tendon. (Yes, the only one I have.) This landed me back in my wheelchair for several months to recover. I was feeling like maybe the universe was trying to tell me something.

So I took a break for while and kept working on strength training. But I kept injuring myself and falling.

It was as if I was sliding backwards and I could not understand why. I was having a lot of trouble with the fit of my prosthetic, and soon I’d developed excruciating pain in my back and stump. I thought it was from an ill-fitting prosthesis. Then I thought it was from an injury. So I went to have an MRI for a supposed torn hamstring tendon. That was on October 23, 2013, just two weeks shy of my five year anniversary of being cancer free. And that was when I discovered the reason why I had been struggling for more than two years. IT was back. And with a vengeance.


The simple joy of a balloon hat.

At first I thought, This is it. I will have to completely change my life again and mourn the loss of my mobility again. The tumor was in my hip and pelvis, exactly where I carry my weight on my amputated side. I thought for sure my dream of learning to run – let alone running a marathon – was over. Hell, at this point it’s about living and my quality of life, right?

But after the initial shock wore off – and several weeks of tears – I learned to surrender. And I mean really surrender. Maybe “running a marathon” was just a metaphor for my life. I didn’t need to physically run one as clearly my life was exactly like one. Then again, perhaps I could get a hand cycle and complete my 26.2 that way. In the back of my mind, I made a promise to myself that no matter what the playing field was, I was going to finish that marathon.

It’s July 19th. I can’t believe we made it. I can’t believe what has happened since I surrendered. My husband and I found a life-saving clinical trial that has reduced my tumor by 20 percent in 4 months. I’m feeling so much better – better than I have in years – that I have begun training again. I met an incredible team of prosthetists who have introduced me to an entire world of athletic possibilities – including the charity 50 Legs and its founder Steve Chamberland, who just donated my state of the art running leg. I only received this leg one month ago; I wasn’t even sure if I would feel well enough to use it, let alone learn how to use it and then participate in a race.


Go Giants!

But I surrendered. I didn’t care about the finish line or how long I could run or even if I could run at all. I am here. We are here. As I crossed the starting line in my shiny new blade, I had already won, looking around at the beautiful setting, the wonderful people, the inspiration behind it all. I felt so lucky to be a part of this incredible celebration of life.

I was not ready to run the whole race; I am working on my endurance. After all, I haven’t run in 15 years and running with one little stump on one side takes A LOT of work! So our plan was to run for 2 minutes and recover for 3 minutes throughout the race. Well, once I got to the portion where I could RUN along the boardwalk on the Jersey Shore, I could not resist and pushed myself beyond my 2 minute mark. I kept going… even though I could feel the fatigue… and then – CRASH! – I was on the ground. I sprang back up, a little bloodied, but mostly worried about wasting time – my personal record is always in the back of my head. Just get up and go. Never give up. So we did. And I started running again, but stayed within my limits for the rest of the race.

Funny, I didn’t fall anymore. Just that one time. It seems I needed a reminder that I am not in charge, this is not on my time schedule and I need to embrace the challenge and be patient. I want to get out of bed and strap on my running leg like it’s a shoe and run a marathon. Well. It doesn’t work like that.


Team Pounding the Pavement.

Life doesn’t work like that. I guess that’s why I love running so much: There is no finer metaphor for life than the drive, endurance, passion and sheer grit it takes to complete a marathon. A few months ago, when I was first learning to run, I was crippled with fear. But then someone told me, “Girl, you got a choice. You can either be afraid. Or you can run. You can’t do both.” It was in that moment that I began to let go of my fear, surrender to the process and embrace the journey.

That was less than a year ago and I truly cannot believe I just RAN across the finish line! For now, my cancer is responding to treatment and I am training for my next 5K on Sept 28 where I hope to RUN the entire race! Who knows? Maybe I will really run a marathon. If not, it really doesn’t matter anymore because I’ve already won.


Together we go further.

Road Tested

September 24, 2016