Last Thursday, another one of my inspirations, died.
She was 14.
When I was first diagnosed with Sarcoma in 2006, my first inclination, as it is with so many others, is to hit the internet and research and read. What I found were clinical journals, papers, research articles, and personal opinions written by Dr's in medicalese that quantified the disease, measured it and spit out a Mathematical analysis that was far from encouraging and far from inspirational. I found 100,000 articles on how to die of Cancer but what I was looking for was a human story about how to live with cancer, how to fight it, how to stare in the face of the unspeakable and live each day. I found the story of a then 11 year old girl who was diagnosed with Stage 4 Ewing's Sarcoma and dared to go to school, learn crafts, celebrate good scans in DisneyLand, play computer games, fight with her little sister and maintain a space on the web that celebrated the opportunity to Live Each Day. I was just a voyeur but this little girl became a part of my every day life and I thought, if she can, I can! I regret that the only contact I made with the family was to write a condolence on the loss of someone so young, their child for Chrissake and despite the fact that I never met her, I felt a profound loss at her passing, cried real tears and felt as if a member of my family died. But underneath the sorrow was also a profound GUILT. She was 14 and should be going to her 8th grade dance and chattering about graduation. She should be kabitzing on Facebook and shopping for clothes, comparing make up tips, and looking forward to High School and her FUTURE. I am 41, have done more sinning, had opportunities to cause pain and grief on my family and friends and right now, I'm OK. With every death, especially of one so young, I have so much trouble resolving this in my own mind. I know I can never understand WHY and so I look for some meaning in my own life and try to determine what good I am doing with my journey. Do my words offer hope? Is there someone out there recently diagnosed with Sarcoma looking for someone LIVING with this disease? I don't know. But I do know this, my presence in this clinical trial, might result in one more treatment option for a person with a nerve sheath tumor. By saving myself, I stand to save many others diagnosed with this subtype that is notoriously chemo insensitive. My success with this drug could potentially indicated success for 1000's of others. My blogging could give hope to the hopeless and with every patient I talk to, I have the opportunity to support many many others. Perhaps the meaning in my journey, is for such a time as this.