The Seasons Change...
written by Robin Yoder
Snow sure is beautiful and it brings back so many happy memories from my past of unique fun of sledding and time with friends sharing tales around big bonfires. I don’t suppose I will be replaying my childhood memories by sledding as snow creates a different set of challenges for me these days. Walking in snow is difficult for me at best now. However, I am not opposed to changing the way I play in it now by making snowballs and tossing them across the yard or catching snowflakes on my tongue and cheeks or perhaps, even making a snow angel! Cancer did change the physical form of my body forever but NOT my spirit or my hope for a better me. Though I often face many challenges, the one constant in my long journey remains my humility. I try very hard not to dwell on “what was” or “what could have been” but rather, “what IS”. There is always a grand elegance in however way I now choose to experience each day, as its dawn births a new “Grace”.
I haven’t always felt this way. In July of 2010, I was diagnosed with a rare bone cancer called a Pleomorphic Undifferentiated Soft Tissue Sarcoma in the thigh of my right leg. I had 3 weeks to wrap my head around the only option for a chance to live….an amputation of my right leg at the mid-thigh level. As scary as it was for me to anticipate and cope with the unknowns, I had to come to a place of peace that I wanted the chance to live more than I needed my leg. On August 5, 2010, that is exactly what happened, my leg was amputated in an aggressive attempt for local control of my disease and the hope for long term survival. I was 48 years old, married and mom to my 14- year old son, Isaac. I had a career and I lived a healthy active life. Six months prior to this diagnosis, I completed a Half Ironman Triathlon in Augusta, Georgia. Initially I felt so much anguish. As a mom, telling my sweet young son, was singularly the most difficult moment of my life yet the most profound act of parenting. I clung to the hope that these feelings of anguish would someday be manageable but never forgotten.
To give you some brief background, the irony of this whole story is the fact that in 1980 when I was an 18- year old senior in high school, I was diagnosed with an Osteogenic Sarcoma (bone cancer) in my right leg. I was aggressively treated at Shands Teaching Hospital at The University of Florida in Gainesville. I was in a “Limb Sparing” surgical clinical trial followed with 72 radiation therapy treatments under the care of two renowned physicians and leaders in their respective fields, Orthopedic Oncologist, the late William F. Enneking, MD and Radiation Oncologist, Rodney Million, MD. This was a very difficult and scary time in my young healthy life. With love, support and faith from my family, friends and a medical team who not only saved my leg from amputation but also in time, considered me cured!
In July of 2010 while riding a bicycle, I noticed a bulge on the side of my right leg. I also noticed that my right toe skipped the surface of the road every 7th or so stride when I ran and my leg felt heavy. That bulge and heaviness was alarming as it was in the exact location of my original disease 30 years prior. That tissue was biopsied and the result was positive for a histologically new and different cancer from my original diagnosis that I was treated and cured from as a teenager. To further the irony, this new diagnosis, a Pleomorphic Undifferentiated Soft Tissue Sarcoma seems to have been caused by the very treatment that cured me. In other words, a radiation induced sarcoma. A collision of ironies to wrap my head around the fact that the treatment that cured me may very well now kill me. It was a lot to handle and to process but I did with the help of many. (That is another story all together.)
For those who handle my leg today, please do so with respect.
It means something to me.
A decision of unimaginable anguish, giving someone permission to amputate my leg. But again, I wanted a chance to live more than I needed my leg. My leg was sick. Hours before surgery, I struggled with the thought of giving up control. I wrote a note on my leg knowing at the very second my leg is separated from my body, it immediately becomes medical waste and will be placed in a red bag and eventually incinerated. It was important for me to let anybody and everybody who would be handling my leg that day know in some small way as they just did their job, to be respectful of such a profound and personal, forever, life changing moment for me, someone they would never know or probably would never meet.
I awoke from surgery with a fighting mentality to commit 100% to my recovery. I decided to put the worry of cancer in the hands of God and to focus on the things that I could control. Learning to walk. Learning to run. And piecing my life back together again. Enter my Earth Angels, Joe Sullivan, Prosthetist, Chris Runkle, Physical Therapist and Scotty Poindexter, Prosthetic Technician. I had the blessing of meeting these guys and to begin assembling my rehab team a week prior to my amputation. It was extremely important to me to know my team prior to my surgery. It was more important to me for them to meet me and for them to physically see me and to hear my goals. I am an athlete and I did not want them to judge me as just another middle- aged female amputee with unrealistic expectations. My husband Wayne and son Isaac were able to be present and ask their own questions and to meet my team. This simply calmed our emotions and began to build trust and confidence in the next step, rather than having our imagination to run wild during the healing time waiting for rehab to begin. I told them that I wanted to run again and to compete. I told them that my son Isaac played football and that I had every intention of walking at his football games. Not one of them flinched or set a limit on me in that conversation. (In all honesty, they probably didn’t have a clue what to think of me but it was the start of a wonderful trusting respectful relationship.) They handled me and us perfectly!
The weeks and months to follow were filled with sweat, frustration and more sweat as the learning curve to walk was so steep. I had big expectations of what I thought rehab and gait training would look like. I had thoughts of big physical gross motor movements. And in some way, because I am strong and athletic, I could manhandle my prosthesis. But, I was dangerous and reckless and I was setting myself up for a fall and a potentially big injury. Enter David Lawrence, Earth Angel #4. David, the “Guru of Gait”, the Owner, CEO of The Gait Center, whoo hoo!, (sarcastic thought in my head) very authoritatively and directly reeled me in and gave me a temporary perch inside the parallel bars. It was at this point an old yet new term was introduced to me, “proprioception”. Does this guy think I am dumb? I know what proprioception means…knowing where your body, arms and legs are in space. When David asked me, “Robin where is your foot?” I thought who is this guy and why is he asking me such a stupid question and making me do these ridiculous exercises? But when I looked down, my foot was not even close to where my perception had it. And my lips started to quiver and tears began to stream down my cheeks. David gently put his hands on my shoulders and looked directly in my eyes and said to me in his very calming yet authoritative tone, “Robin you do not have a foot or a knee. It is gone forever. I need you to understand the purpose of these focused drills so that I can teach you and train your brain to accept your new normal. This is what proprioception “is” in the amputee world. It is the key to successful gait and higher level activity.” Bingo!! This dose of reality resonated with me as harsh as it felt. It is what I needed. I got myself composed and went to work. This was my turning point as David was learning how to “coach” me in a sense and I began accepting his coaching. I needed clear understandings and he was figuring me out. My team was complete. I had my Earth Angel Mechanic in Joe and I had my driving coach in David. And together, we set goals and worked deliberately and methodically with drills and drills and more drills.
As we move forward in time and I became more confident in my skills, the power shifted from them to me and I was thriving! 8 months post amputation I walked the Monument Ave 10K along with 150 of my closest supporters. I was flanked by my husband and son and of course my Earth Angels. I learned to run, bike and swim and 18 months post amputation, I completed a sprint distance triathlon and ran most of the 6.2 miles of the Monument Ave 10K. Physically I was improving and I was gaining more and more confidence but emotionally I felt sad. At some point, I knew I would have to begin to confront my grief. It was a strange time because grief and joy seemed to collide with each success. There was no point in recovering my skills just to overlook the emotional pain I was feeling. I took my own best advice and sought out help in the form of counseling. Acknowledging my grief, my painful struggles, my courage while accepting the joys of my hard won victories was an exhausting process but a necessary one to come to a place of peace.
It has been 8 years since my amputation and I do feel more and more at peace with my life. Those early feelings of anguish have mostly faded but the memories and details of the twists and turns and challenges of this long journey, remain forever etched in my mind and heart. In some small way though, the steepness of my learning curve was another irony in this story, as it became a big distraction from the worry of the cancer. I make NO apologies for my success. I have worked hard, very hard. I have kept myself fit physically and emotionally. I do not see myself as a victim nor do I feel entitled to anything. When I am told that I am inspiring, I take it as the compliment. And, with gratitude, I will always allow strangers to hold open a door for me. I do occasionally experience frustrations but I don’t quit. I keep myself involved with the things that are important to me. I serve on the Board of Mission Gait where I use my voice and experience to represent and advocate for the amputee community. I also serve on the Sportable Athlete Advisory Council, helping to improve the outreach efforts to new participants and helping to build a stronger adaptive sports and recreational community. I am a Certified Peer Mentor through the Amputee Coalition. Nothing gives me more satisfaction than meeting a new amputee and encouraging them with a hopeful reality.
To summarize where I am today, I have to say that NONE of my success would have been possible without the resources that have been available to me. I am humbled because I absolutely know that many people have not been as fortunate. I owe my sincerest gratitude to my team of Earth Angels at Powell Orthotics and Prosthetics, Lawrence Rehab, The Gait Center and Mission Gait. Each of you in your own special way have nurtured and coached me. You have given me a new voice and a platform simply to live in this world with confidence, curiosity and joy and to inspire others OUTSIDE the therapeutic area. When it was time to push me out of the nest, you did in the most caring and reassuring way. You have cheered on all my victories big and small. What I am the most grateful for is how each of you handled my then, 14 year old son Isaac. He observed with an open heart your caring, hopeful and skillful ways. You recognized the impact and scariness on him what I (his mom) was enduring. You brought him into the equation in such a positive way and made him part of the Team. He observed all of your goodness and skill over these years. Your influences and my experience set him on a career path, as he will be starting Graduate school in the fall at the University of Pittsburgh School of Prosthetics and Orthotics… a future Earth Angel to someone like me. I am eternally grateful.
With gratitude and much caring,