Selfless, sacrificial, deep and full. It has been a week filled with events that have made me see the human side of selfless; where others have gone out of their way to help. My week started on Monday when I found myself in a church in Rock Island. In honor of one of my patients, who took an initiative that amazed me, writing, editing, and publishing a book in less than a month about her fight with sarcoma. She did not stop there; she dedicated the book to sarcoma research and all the proceeds. I was honored to be amongst the people who supported her, and I was met with an enthusiasm that surpassed logic. When I stood at the podium to give a few words, I completely missed why I was there. She had poured her heart out to the world in words that she materialized into a book that she selflessly donated to sarcoma research. But that is not all that struck me.
She had been diagnosed with a rare tumor that does not grab media attention. Do you know what I mean about cancers that get attention, those that get chased by the paparazzi? One person today in the clinic boldly said to me “Pink, it’s all about pink, what about the other cancers Mo?” I thought of yellow for sarcoma. She asked “who are their advocates?” Well, that is a hard one. Over the years while I have been building my sarcoma program, I have watched as individuals stood up, each person a unique representation of a very diverse disease that is exceedingly rare. Today I share a story that is a stone on the journey that helped me reach a book signing that open my eyes to the community that really wants to help.
I share the story of a young woman who was faced with a fast growing sarcoma that made time and her sarcoma stand still. She had one motto in life that resonated with many; it was “live it”. She talked a patient into an amputation and he realized his dream by going to the Galapagos Islands where he shot darts with the pygmy people and played with seals on a beach. She told people to dream and never give up, to never quit asking and to find the best treatment that could give them a life. She told them that living was in the heart, and despite being afflicted with a rare cancer, she found her calling to help others. Truly selfless in her fight, she made me see beyond what one person could do to effect change in a community around her. I met her husband today and with his simple words, and amazing gesture, he said thank you.
Who are the advocates of the rare tumors? In my eyes, they are the special individuals who traverse reason, fight beyond any doubts spreading awareness and bringing camaraderie to a lonely fight because they were the pioneers that got there first and learned something. They battled ignorance, loneliness, hopelessness and mustered the courage to say: we shall prevail! I bow to them all tonight as I reflect on the courage and bravery of their hearts, in finding a voice that is loud enough to penetrate the people around them.
A bike ride, a motorcycle ride, a golfing event and a book………….
Thank you my friends. You have achieved the ultimate love.
For information on Laura Koppenhoefer’s book, Notes on the Journey: Living with Sarcoma and Hope, visit the Living in Hope Foundation.