In October 2010, as I was walking into a restaurant, my head turned to my husband so I didn’t see a curb and tripped on it, kicking my left foot really hard. I immediately had a ripping, searing pain in my left belly and into my groin. The pain persisted for days, then weeks, then months. Other strange symptoms developed. I started noticing a heavy, weak feeling in my left leg, like it would ‘give out’ after climbing up stairs, or biking uphill (I’m an avid cyclist), and twitching in my leg all night after cycling. I would wake up some mornings after sleeping on my stomach with my entire left leg completely asleep–and the excruciating pain of it reawakening! I went from doctor to doctor, had all kinds of tests, ultrasounds of the abdomen, blood work, x-rays, MRI of my back, pelvis–all normal. This went on for two years. So then of course, they started telling me maybe I should see a psychiatrist. A gynecologist at least gave me the benefit of thinking the tender spot deep in my left side was a torn muscle and sent me for physical therapy with a pelvic floor physical therapist. After six weeks of no improvement, she thought I might have torn the rim of my left hip socket and called my sports medicine doc to order a special MRI of the left hip joint. She was right, I did have a little tear, but the MRI also showed a “large, cystic mass.” It lit up like a Christmas tree on a CT scan with the classic appearance of a nerve sheath tumor that is highly unlikely to be cancerous. It was deep in the belly sandwiched between two thick muscles and against the colon and appeared to be next to or growing from a major nerve and next to major blood vessels so it was too risky to do a scope or needle biopsy, it would just have to be taken out. On August 3, 2012, it was taken out just how I wanted it to be — meticulously in little pieces by a skilled neurosurgeon to save the nerve so I could still bike and run. Unfortunately, it ended up to be sarcoma, a highly malignant type, unclassified high grade retroperitoneal. So far, following a nutrient dense diet, acupuncture, yoga, and some herbal remedies, my scans every 3-4 months have been clean. Three weeks ago I had arthroscopic surgery to repair the hip tear, so I’m looking forward to a great biking season this Spring.
If you or a loved one has been impacted by sarcoma cancer, we encourage you to share your story. Sharing your story can be such an inspiration to others who are dealing with sarcoma in their own life and remind us all of the urgency to find better treatments in order to make an impact on the devastation that sarcoma cancer brings. Let your experiences help others become involved with raising awareness!