Dana's Road to Recovery
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!
The pictures today are from wheelchair PT where I balanced for over 4 minutes on just two wheels! Wahoo! We had to stop a little early due to my back but we are making progress!
Have you noticed my t-shirt, bracelet and wheelchair colors are all teal? This month is DESMOID TUMOR AWARENESS MONTH! So much to celebrate. In just a few short weeks I am headed to Philadelphia for our annual patient meeting and 5K Fundraiser. My first two years, I ran in my blade. Last year I walked. This year... I AM ROLLING thanks to you!!!
Without the Desmoid Tumor Reasearch Foundation, I would not be here today. Theyhave advocated tirelessly for funding, research and support for desmoid patients. I would like to honor DTRF this month and pledge the first $2000 raised in September will be directly donated to DTRF! That's right, I'm going to just keep paying it forward!
So as we ready ourselves for a long weekend know how thankful we are for your support. I have the ability to roll outside and enjoy this last taste of summer. There's something simply magical about feeling the breeze through your hair!
Please share our story and help us to raise awareness and funds for my beloved DTRF this September! Thank You!! Rollin Out!
Can you tell I am excited? I can literally taste the liberation coming my way :) Keeping it real, it has been a long couple of months. I have not been ambulatory for 8 weeks and with my current wheelchair and crutches, my circle of existence is pretty darn small right now.
Currently, my outings from the house are limited to doctor's appointments - which are plentiful and sometimes across the country - and my daily coffee dates with my husband and dog. Like many that live in temperate climates, the summer months are like golden nuggets to be savored. At first, I felt like I was going to "miss out" on the entire season, gazing out the window and waiting for my wheelchair.
And then, one day, it struck me. I only needed to wheel out into my glorious backyard to soak in the summer bounty. Or go for a ride with my husband and dog. Sure, it's not the same as walking - but I am still outside! For some reason, I had associated my ability to enjoy the outdoors with being mobile - which honestly sounds silly as I type it. Funny how your perception of something can stand in the way of your success.
This is the portion of my journey I call Healing from the Inside Out. After 18 years of surviving and thriving cancer, I have begun to understand that everything I need to heal is right inside of me. The infinite source or peace, love, joy and hope resides within my true self.
Sounds cryptic - but really it is quite simple. Recently, I was asked to speak about this topic to my Desmoid Tumor family to provide them with some inspiration and hope. If you are in need of a pick me up, or would like to learn more about Healing from the Inside Out - please watch the video!
In the meantime..... AUGUST 17th is #fancywheelchair day!! Just a few more weeks until I regain my independence. I cannot thank you all enough for carrying us this far - your support means more than you will ever know! THANK YOU!
Crazy - this still does not cover the cost of my #fancywheelchair! I am confident that we will reach this goal together as I have literally been lifted and carried by strangers all day today!
Yesterday, I left my beloved home and family in Oregon for my quarterly trek to the National Institutes of Health in DC where I am fortunate enough to be a clinical trial patient. Let's not forget the real matter at hand - I have several desmoid tumors in my hip/pelvis and residual limb so it can't be all fun and games about mobility. We must monitor my cancer and the subsequent effects of the medication to ensure my vessel is ready to ride!
While I have made this trip alone several times before - I have always been mobile and in my prosthetic leg. Today, I am traveling with no leg, a pair of crutches, a pocket full of cash, one carry on, one checked bag and a huge smile - ready to meet the many folks who will help me reach my ultimate destination of cancer care.
When I first began to plan this trip I could not imagine making it on my own. How could I get there, who would help me and how in the world was I going to carry anything? I am on crutches, with one leg, and a very, very sore back and pelvic girdle. I am really in no shape to be traveling, let alone... ALONE! Of course Jim wanted to come, but after all of the years of cancer care, we simply cannot afford to send both of us across the country 4 times a year.
Shortly after launching the GoFundMe campaign, Jim and I were overwhelmed with the sheer number of folks who reached out to encourage and cheer us on. First, it was mostly people we knew, and then we began seeing notes and donations from strangers! WHAT? People who have never met me or my family are willing to part with their hard earned money to help us? And many leave the most lovely notes of encouragement thanking US for inspiring THEM! It is like one giant paying it forward machine :)
What I have discovered in this campaign thus far - the human spirit it stronger than anything else in the world. When that spirit connects through altruism it bridges the gap of all valleys and illuminates the HOPE road brightly ahead. I literally cannot articulate how high our spirits have been lifted through this process.
If it weren't for this campaign, I am not sure I would have had the courage to go it alone today. Would people really help me? Can I manage my luggage? My carry on? Myself? Let's not forget about the scans and news I will receive - is my cancer stable? Growing? Shrinking?
If people are willing to help me through GoFundMe without ever meeting me in person, then surely I could make it across the country solo. But am I really solo? Are we ever really SOLO? No, we aren't. We are all part of this thing called the human race. While we are vastly different in our appearances and backgrounds, there is one unifying factor across the board. We are connected by the human spirit. It is undeniably powerful and if you are willing to ask for help - and receive it - there are millions of spirits out there that want to help you.
My traveling experience today only underscores the significance to me of what this whole thing is all about. Being present, grateful and aware to recognize the power of the human spirit in each and every moment.
I think the universal response when someone discovers I have "lost" my leg and that I am still dancing with cancer is one of sympathy and remorse. I often hear - "I am so sorry." And yes, while I agree the road has been bumpy and quite difficult at times, it is MY road - whether I like it or not. When I was diagnosed with cancer 18 years ago, I never would have voluntarily gotten into the "cancer line." But nearly two decades later, with all of the wisdom and gratitude I have gained, I would never, ever get out of the" cancer line" now. How would I meet all of you beautiful people out there without my cancer?!
So... as we enjoy this Sunday - think of me at 35,000 ft in a #southwest plane, making my way to the nation's capital. I am no longer fearful about my trip today or my scans tomorrow. My anxiety about my return trip has vanished. When you literally have the nation helping you to get to your ultimate destination, you simply feel the power of the human spirit and know that anything is possible.
I will make it to DC safely. My scans will be GREAT! We will reach our funding goal! I know, because #togetherwecandoanything! THANK YOU!