First, I wanted to say a huge THANK YOU for even stopping to read this story. I know there are thousands of us out there asking for your help. It is a humbling experience having to ask for help in such a public fashion, but cancer doesn't discriminate. Cancer doesn't care about humility. Cancer is one challenge I don't think any of us can really prepare for.
Eighteen years ago I was diagnosed with a very rare form of sarcoma called aggressive fibromatosis or desmoid tumors . We first discovered them in my right leg and did everything we could for nine years before I finally had my liberation surgery, freed myself from cancer and subsequently, my right leg above my knee. Following that surgery in 2008, I was confident I would be CANCER FREE and my largest challenge moving forward would be learning how to live without a leg. I even went so far as to set a goal of running a marathon as an above the knee amputee!
In 2013, just two weeks shy of my "5 year cancer free party" (hats and horns already purchased to celebrate), I discovered my old friend was back and with a vengeance. This time, in my hip and pelvis. Traditional treatments were exhausted, so I hopped onto a clinical trial that has had great success in shrinking my tumors by nearly 50% in 3 years.
Regardless of the shrinkage, those dang tumors in my hip/pelvis create a lot of inflammation and pain. So I guess I wasn't too surprised this past March when my team told me that the tumors had resumed their growth.
For the past several years, regardless of my pain and discomfort, I have pushed through, bound and determined to run that marathon. I thought if I could run, and fast enough, I could stay a few steps ahead of the cancer. I felt like if I stopped trying to walk, it translated into me giving up. And then, the cancer would win. And I would be gone.
A few months ago, my pain reached a whole new level and it was time to take a seat, literally. My whole time as an amputee, I have adapted to life in a two legged world. I drive with my left foot (when I used to drive!), I walk up/down stairs one step at a time, I hop when I am not wearing my leg to get in and out of the shower - the list goes on and on. I was so sure I would be "OK" that I just never wanted to make my life and our home ADA accessible. Similar to my desperate attempts to stay mobile, I envisioned getting a wheelchair and making our home accessible as a sign of declination. A beginning of the end so to speak.
Well, I don't have a crystal ball so I am unsure of what my future holds. I do know that I am not going to be walking anytime soon, and my leg is not going to grow back. It is time for me to assemble the resources I need to support me at this stage of my life. Regardless of how immobile I am, I am still living and I want to LIVE, get outside and enjoy LIFE. I want to roll with my husband and dog outdoors in our lovely neighborhood. Currently, I feel like I am going through my amputation all over again.
So, here I am asking for your help. Medical insurance will only pay for one thing - a leg or a wheelchair - not both. So, we are on our own for the wheelchair, which has to be custom and will take sometime to build and acquire. Along with the wheelchair, it is time we widen some doorways, make our bathroom less hazardous, put in some ramps so I can go outside on my own... and breathe in that sweet fresh air.
Can you help? If you can't make a donation then please share my story. Just think, if 3,000 people make a $25 donation we will meet our goal. We can do this. None of us are guaranteed an infinite amount of time on this Earth. I know mine may be limited and I would love to be comfortable and mobile. I promise to post updates, videos and posts all about my journey. I even started a blog - please check it out where you can read even more about our story.
Life is truly a gift and I am so grateful for each and every day. Jim, my husband and I, thank you for taking the time to read this and share the story - and maybe even donate!
- Evan Brown
- Kim Rhodes
- Brittany Meier
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