by Vicki Strong (Leiomyosarcoma Survivor)
“You have leiomyosarcoma. It is very rare and very serious,” my oral surgeon told me. “You need an oncologist immediately.”
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.”
I have had the pleasure for six years now of administrating a Facebook group for those with leiomyosarcoma. This group has become what many of those around the world with LMS call “a lifeline.” As with all Facebook cancer support groups, it allows people to learn what treatments are available, to share information on clinical trials, to get referrals to doctors specific to their needs, and to ask questions about side-effects and emotional issues. Most of all, it is a community of people across the globe who care very deeply about each other and who offer hope to those who are new on the journey and need to engage with someone who understands.
The sarcoma community has become both my life’s work and my lifeline, and with good reason.
Research conducted at the Cancer Support Community (which sponsors Gilda’s Club) has shown that “people who participate in support groups, either face-to-face or online, report significant decreases in depression, increased zest for life, and a new attitude toward their illness.” Community may not just energize, but according to a study published by the National Institute of health, “support groups may even have a positive effect on survival.”
Every opportunity to participate in community is an invitation to be empowered, educated and energized. And maybe, just maybe, to live longer.
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.
In these days of Covid-19, the Rein in Sarcoma community looks different, but we are still here.
What could have become a pandemic pause has become a new opportunity as our Second Tuesday morning Talk and Time Together group moved to video calls. It enables those who can’t leave home, or live far away from the Twin Cities, to participate. We plan to merge technology and touch as we return to face-to-face meetings (when it is safe to do so) by including a call-in option for remote participation. Contact the Rein in Sarcoma office at (763) 205-1467 for more information on these chats or indicate your interest on the RIS Support Network form.
Facebook groups have become stronger, and more interactive for many organizations. Rein in Sarcoma will launch a new group later this month, and we are eager to meet many of you as we share our stories of hope and learn from each other. Stay tuned for more information.