What was your first reaction when you were told that you had a desmoid tumor?
I didn't know I had a desmoid for sure, until my post surgery pathology came in. During surgery the rapid pathology indicated I had a full on sarcoma. So at the time, a desmoid diagnosis seemed like a "relief."... But then in six short months post surgery,
my desmoid had recurred with a vengeance and grew back nearly double the size from the time it was removed. The news came during Christmastime 2013 and with so little known about desmoids and no known cure, it
was a paralyzing fear of the unknown and fear of how we were going to stop its aggressive growth.
Is there anything that you would have done differently since being diagnosed?
...I have faith and we have prayed for the wisdom to make the best decisions we can at each step in my treatment and I continue to believe in those decisions.
What are the 3 things that sustained you most through this journey?
My husband, daughter, family, friends and my faith that there will one day be a cure for all of us desmoidians. And knowing that I am not alone in this journey. The support from the DTRF via patient meetings and the Facebook group have been essential for
support and strength.
When we were talking earlier, you mentioned that you are one of the "lucky ones". What did you mean by that?
I feel lucky that my desmoid is in a location that is causing only minimal pain (compared to some others that have severe pain). For now Nexavar slowed its growth for long enough to allow me some time on the "watchful waiting" approach (while others are enduring endless chemo treatments with little or no success).
If you are one of the "lucky ones", why are you so committed to funding desmoid tumor research?
I try to be HOPEFUL and maintain a forward looking approach. Life indeed does not have to be perfect to be wonderful. But I cannot deny that my desmoid hasn't significantly impacted my life and family. In addition, every other desmoid patient out there has their own story to tell. Having a rare disease, we the patients and caregivers must push for our own research to find our own cures. There is no one else out there that will do it for us! With an uncontrollable little known disease, it is the one thing we can help take control of!
