Type of Sarcoma: Leiomyosarcoma
Date of Diagnosis: 2010
Location: Jaw
“You have leiomyosarcoma. It is very rare and very serious,” my oral surgeon told me. “You need an oncologist immediately.”
I was referred to the University of Minnesota and Dr. Keith Skubitz. After a free flap fibular transplant of my jaw, my prognosis came back as poor; Stage 4 high grade. I had several recurrences and eight surgeries. I also had radiation for neck and SBRT on ribs.
From 2012 to 2014, nearly every scan found a new tumor and I lived with the worry of a poor prognosis. Inexplicably, my tumors stopped in October 2014 and I have been NED ever since. Dr. Randy Hurley, who took me on as his patient not long after my adrenalectomy, has always known me as a NED patient. I will let him take credit as my lucky charm if he wishes!
I had a slightly different experience than many first diagnosed with sarcoma — I had actually heard of the disease. A friend of the family had leiomyosarcoma, but we were not able to connect.
Instead, I sought out other people I knew well who had “cancer experience.” Friends whose family members had cancer. Several friends who had survived breast cancer. I even started a Christian Cancer Support Group in my church and had some very intimate conversations with others. But their experiences seemed to be only very loosely related to mine. Where were “my people?”
Then I read in our local paper about a fundraiser held in honor of the family friend with leiomyosarcoma. The proceeds were donated to an organization called Rein in Sarcoma.
That year, I rode the carousel at my first ever Party in the Park. I engaged in conversation with many sarcoma survivors, finding the community of cancer misfits I was seeking. I was almost giddy when I got home that night.
Since then, I have found many new ways to be strengthened by the community of those with sarcoma. I crave the relationships in this community. We learn from each other. Even more than that, we hold each other up. We are in many ways like family. Connected by some really crummy cells. We are a community of the rare.
As I have heard said many times:
“It’s like meeting a whole pack of unicorns when I was afraid I was the only one.”
If you are new to the Rein in Sarcoma community, welcome! You are no longer alone. If you, like me, have been here a long time, thank you for being a friend.
