My Sarcoma Story – Robert

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robertI was 29 years old. In good shape and making big moves in my life. I was transitioning into a new career after leaving a business I co-founded. I had met the woman I wanted to spend the rest of my life with and was finally starting to grow up after a decade of really living up to my millennial generalizations. I felt really excited about where my life was headed.

Then I went in for an MRI to check out what was going on with my shoulder. I thought I had torn something working out. After a three week diagnosis, it turned out I had a Ewing Sarcoma of substantial size. I was told, “This is a rare pediatric cancer and adults over the age of 25 just don’t get it.” Well I did. I went through all the confusion, anger and fear that comes with a cancer diagnosis, but mostly I stayed positive through it all. After a year of chemo and a six hour surgery, I decided to stop chemo before my protocol ended.

I wish I had stopped even earlier. Ten months later, after asking that perfect woman to marry me and writing all the checks and receiving all our RSVP’s for the wedding we had been planning, I went in for a routine blood test. Within two days I was living in the hospital, receiving more chemo and waiting to find a donor for a bone marrow transplant that might save me from treatment-related, acute myeloid leukemia, (AML).

We got married in the hospital where I lived for 6 months. I was fortunate enough to find a donor for my BMT and here I am nearly four years later with a 2-year-old son born from IVF. I am truly lucky!

Words of Wisdom: 

1. Stay positive! I live by that mantra because I believe I would not be here today if I had not been able to keep my positivity throughout my entire fight. Even in the most dire of circumstances, positivity can be the catalyst to keep moving forward.

2. Question everything. Trust in your doctors is important but equally important is challenging them and making sure they see you as more than just another number. Remember they are human and they sometimes need to be reminded that you are too. They need to sometimes think outside of the box and reconsider your situation. Respectfully questioning everything will require them to think twice about your specifics before their appointments with you.

3. Don’t forget. Once you are cured or have progressed into remission, don’t forget the perspective you have gained. Survivors are given an enormous gift with the difficulties they face. The perspective that this life is finite. The knowledge that tomorrow is not a given is incredibly powerful and mostly taken advantage of until someone enters the later years of life. We are acutely aware of this fact which gives us a gratitude and ability to enjoy our time here that others do not get to experience. Hold on to that because it can be easy to forget.

Role of the Sarcoma Foundation of America: Awareness about the impact of sarcomas is still unacceptably low, unless of course, you have been affected by one. With 20% of all childhood cancers being sarcomas, we need awareness and research to stop this disease NOW! Sarcoma Foundation of America is making gigantic strides towards that goal and we need to support their efforts. Research is the only way to create the weapons we need to fight this disease. Research only comes from awareness. Sarcoma Foundation of America is fighting for all of us on both fronts.


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