Today the White House released more information about the Moonshot to Cure Cancer. A fact sheet with some explanation (though no details because, too new, right?) was released and the Task Force is requesting stories about how cancer touches each of us. I submitted my story to the Vice President and his Task Force:
 
Last year, I was diagnosed with a pediatric cancer generally found in bones. There are many things wrong with that statement. Most notable is that I am neither of pediatric age, I am 46, nor was the mass was found in my bones. Instead it was in soft tissue in my neck. Ewings Sarcoma is rare. It’s rarer, still, for someone my age and with the type of occurrence.
After diagnosis, when your mind clears away all the distractions that are unanswered questions, there are two big things on your mind: How did it happen? How will we fix it? Neither of those can be addressed without meaningful research for cancer.
You may focus on fixing it. But how do you treat a rare, pediatric cancer in an adult? What does the research show? Well, the research does NOT show. The research is done on kids, so adults with the diagnosis are left to simply try a kids’ treatment and hope it works – like putting Snoopy Bandaid on your c-section incision. Once you get past that and into the active mode of treatment, your mind wanders. How did this happen to me? What did I do that caused this? What could I have done to prevent it? In this case, there are no answers. We can identify the cancer, but there’s no known cause or prevention. You simply accept that either (a) this is something that just happens, or (b) any previous decision in life could have brought this on. Suddenly a youth involving Pop Rocks candy looks entirely different.
Something like the Moonshot push for cancer research provides hope, direction, and a purpose for those of us who are living with this disease. Yes, this is personal. But it’s equally about future patients. Thorough research could make a difference in many ways. It could mean that someone else in my city diagnosed with Ewings won’t have to know they are the ONLY person with it. They won’t have to put all their faith in a physician that has never seen it before. It could mean healthcare providers applying data – real data, not just anecdotes – to the treatment plan for a 46-year-old body instead of hoping the 12-year-old’s plan will work.
I’m 15 months into a nightmare that began sitting around the kitchen table with family playing cards. My hands were cold, I put them on my neck, and something was wrong. Chemotherapy continues. We don’t know if it’s working, we only know that it’s the best method known…for kids. My career is on hold. Yes, I am still able to work thanks to a flexible employer, but I can’t put the time or effort in to grow, to continue to learn, or to improve my programs due to the necessity of being out of the office for treatment and recovery from treatments. My worries are not just for my health, but how do I recover my life after I regain health?
Cancer impacts everything. It’s not just treatments and hair loss. It’s your job. The basic human need to feel like a productive member of our society through work and volunteer efforts and community building. It’s the things no one talks about and we hope others never have to worry about: What will I eat for breakfast and will it taste like food or metal? If I go to the store, will my muscles be able to carry me through the aisles? If I go out with friends, will there be a reasonably clean public bathroom… just in case? If I touch the handrail by those stairs, will I end up with an infectious disease because my immune system is so worn? If I pick up my baby godson, will I be able to hold him safely because my hands are numb from chemo-related neuropathy? Will I outlive my parents?
I suspect there are those who aren’t sure how a dedicated drive for cancer research will provide answers to these questions, but it will. The more we know about cancer – the more we can learn about rare forms of cancer – the better we can help individuals prevent it and the better we can help healthcare teams treat it and the better we can help everyone who is faced with it deal with the absurd challenges that arise in the path to cure.
I am 46 years old with a pediatric bone cancer that was found in a salivary gland. That statement is wrong on so many levels. I look forward to the results of the research that will correct it.