June 23, 2014–the day that changed my life forever. Exhausted by six months of increasing back pain and no answers from doctors, surgeons, chiropractors or physical therapists, I went to the ER determined not to leave until I knew the cause of all this discomfort. As many of you know, I was told I had a tumor in my spine that had caused a burst fracture in my T-10 vertebrae. I was rushed to a neurosurgeon at AGH who operated on my spine less than 12 hours later. After one month’s time I was told that there was no genetic marker for my tumor. The best guess was round or spindle, non-specific sarcoma. Treatment would consist of radiation and four months of chemotherapy. Not satisfied with that diagnosis, I sought out Dr. Hussein Tawbi at the Hillman Cancer Center for a second opinion. Dr. Tawbi, though not able to get a genetic marker, did, however, believe my tumor to be small, blue cell, Ewing’s Sarcoma. He recommended a much more vigorous treatment plan. Dr. Tawbi has been saving my life ever since.
Having endured double fusion spinal surgery, 16 cycles of radiation and intensive chemotherapy that began on the 21st of September, I remain in treatment and am doing well.
Why tell you this? Those of you who know my story have heard it before. Those who do not, please ask me and I will tell–I have no secrets. I’ve formed this team—NEVER MIND THE BOLLOCKS…LET’S CURE SARCOMA– to raise money for sarcoma research, “the forgotten cancer.” The monies raised will be jointly shared with Dr. Tawbi and his research team at Hillman along with the Sarcoma Foundation of America.
Sarcomas are rare—very rare—comprising only one percent of all diagnosed cancers in adults each year. For children it is 15 percent. Ewing’s Sarcoma in adults is diagnosed up to 20 times a year! Why me? Sarcomas follow no rhyme or reason. They don’t discriminate as to age, sex, race, nor how healthy your lifestyle. They just exist and they are all horrible.
Because of their rarity, attracting researchers and raising funds continue to be major issues.
Laura Bulmer (whose photo my children and I hold in the above picture of us) and I found each other on instagram about six months ago. She was the first adult I found who shared the Ewing’s diagnosis. I followed her account and found inspiration from her postings. We texted a few words of support and encouragement back and forth a few times. Sadly,we never really got to know each other. Laura lost her battle with Ewing’s after fighting like hell for over four years. She was 28 years old. When we walk on July 11, we will also be walking for Laura Bulmer. Please check out her blog, http://laurakbulmer.blogspot.com/ which is more than worth reading. It tells the story of a strong, passionate, young woman with hopes and dreams. A fighter with great spirit and positivity, she now looks down on all of us, watching out for us.
We will walk for all of those who senselessly lost their battles against sarcoma, an insidious disease. When we walk on July 11, we walk for Dr. Tawbi and his research team. We walk to support his work to prevent any more senseless loss of life from sarcomas. We walk on July 11 to celebrate those fortunate enough to withstand all that sarcoma can throw at us–those of us not stronger, not more determined, just very lucky. It is our responsibility to carry the torch for those who, undoubtedly, would have carried it for us, to spread the word that sarcoma research/funding must be increased to ensure that wonderful oncologists like Dr. Hussein Tawbi continue working each day for all of us who have been touched in the past, are touched now and will be touched in the future by sarcoma.
Yesterday, June 23, is exactly one year since I was told that I had cancer. It’s kind of surreal all the changes that have taken place in my life since then. I have endured much, grown in many ways, re-examined who I am and what is important in life.
I have much to share but right now, exactly one year removed from a day of hell, I want to again urge all of you out there to help me fund research for sarcoma. The least funded of all cancers! I need your help! Please do what you can to help all who suffer with sarcomas! Make sure that lives like Laura Bulmer are not thrown away because medical science was unable to save her. She mattered!! We all matter!! Visit my page and donate what you can!! Thank you!!
If you or a loved one has been impacted by sarcoma cancer, we encourage you to share your story. Sharing your story can be such an inspiration to others who are dealing with sarcoma in their own life and remind us all of the urgency to find better treatments in order to make an impact on the devastation that sarcoma cancer brings. Let your experiences help others become involved with raising awareness!