Type of Sarcoma: Leiomyosarcoma
Diagnosed: May, 2014
Before I was born, I almost lost my life when my mother had a fibroid tumor surgically removed while I was still in the womb. Later, as a 5-year-old, I was diagnosed with polio, paralyzed, and told I would never walk again. After years of therapy in and out Boston Children’s Hospital, I walked out and survived.
Every crisis, and every happy moment, taught me how to help myself. After college, I married and had two wonderful boys. I found ways to cope with life’s ups and downs when I found myself on my own, a single parent juggling life as a proud mom and career woman. As a recruiter in the computer field, I enjoyed helping people, and also learned to reach out for support, help myself, and create a “survival tool belt.” I realized the importance of being grateful for what I have – especially my two sons.
I took a break from my career for six years to care for my mother, who passed away after her battle with Alzheimer’s. I found this role meaningful, yet exhausting, but it strengthened my ability to find resources and navigate the medical system.
A year later, I was diagnosed with a benign meningioma brain tumor. I had hoped to return to work, but I felt lost with this new diagnosis. After retiring, I enjoyed a few years of babysitting and making memories as “Neena” to my five precious grandchildren.
But then I started having degenerating uterine fibroids and experienced dull pain for years. My gut instincts told me something was wrong, and I kept asking doctors whether it could be cancer. I felt ignored for years, but finally found someone to listen in Neil Horowitz, MD, at Dana-Farber.
I had surgery to remove what we thought were fibroid tumors, and that’s when Dr. Horowitz told me and my sons that I had stage IV uterine leiomyosarcoma, a terminal rare cancer with nodules in my right lung.
I was frozen in time and realized I had a huge battle ahead. I guess you could say I was fortunate to have had trials and tribulations earlier in life that taught me how to survive. I was losing my identity, and starting to have anxiety about the next scans and results. I felt scared and alone, and could no longer make the commitments to babysitting for my grandkids, which was such a loss. For me, the biggest question was: “Will I be there for my grandchildren?”
My doctor Suzanne George, MD, plus the top-notch sarcoma team at Dana-Farber and multiple other specialists, inspired me to do my research, empower myself, and improve my quality of life. I instinctively turned to my “survival tool belt” I’d cultivated throughout life’s trials. I checked out Dana-Farber’s Blum Resource Center, Zakim Center for Integrative Therapies, and Nutritional Services, and participated in expressive arts, meditation, reiki, reflexology, massage, and writing and spirituality groups, as well as a Cancer to Health group program.
I also found Dana-Farber’s sarcoma support group, led by the dedicated Larissa Hewitt, LICSW, my social worker and mentor. One day, four of us ladies from Larissa’s group went out to lunch. From a few hours of sharing stories, the idea to create a sarcoma Facebook support group was born. After brainstorming with a few friends, I founded the Sarcoma Sunflower Brigade for us to keep in touch. Now, from the original group of four, we have more than 100 members!
Although an online group, the Brigade can also be found “marching forward” at Dana-Farber, visiting each other in infusion or waiting areas, or meeting up in the café to make new sunflower relationships. I encourage members to celebrate life despite living with a cancer, like I do. For me, my best treatment plan is my grandchildren, and I love watching their excitement as we work together to illustrate personalized children’s books I’m writing for them. My relationship with my family is stronger than ever.
I have found a new purpose in life through the Sarcoma Sunflower Brigade, helping others and advocating for rare cancer research. The road is difficult with cancer, especially a rare cancer, and can be lonely, but with the Sarcoma Sunflower Brigade Group, we will survive.
If you, or a loved one, are being treated for sarcoma and are interested in joining the Sarcoma Sunflower Brigade Facebook Support Group, please email Mary Anne at email@example.com.