My name is Elyssa and I’m a born and bred St. Louisan. I became familiar with cancer at a very young age when two of my grandparents passed away from cancer. I remember seeing my grandmother struggle through chemotherapy and eventually lose her fight. In 2011, I lost an uncle to stage IV lung cancer. Those are my cancer memories. So when I thought about my own health and the challenges I might face, let’s just say it was too soon to be told at 28 that I, myself, had been diagnosed with cancer.
For several years, I’d had annoying, uncomfortable nerve pain in my right arm. I’d been told by a doctor that it was probably just a pinched nerve from playing tennis and to just keep an eye on it in case it changed. The symptoms basically remained the same as years passed until around my birthday a couple years ago. I started to notice that anytime I straightened my right arm above my head, I was feeling tingling and numbness all through my arm, and if I even tried to lay down and prop my head up on my right hand, forget it – my entire arm would be pins and needles.
It wasn’t long after then that I noticed a pretty sizable mass right where the nerve pain stemmed from, and that was when I decided it was time to do something. My primary care doctor ruled out a swollen lymph node and referred me on to a surgeon. A CT scan, MRI, and several weeks and appointments later, I was finally having surgery in June of 2012 to remove whatever the mass was. Multiple surgeons had weighed in with mine and they all assumed it was a schwannoma, a nerve sheath tumor that 90% of the time turns out to be benign. None of the doctors seemed overly concerned that this may be something bad, and none of them bothered to do a biopsy. But then on June 29, a day I will now never forget, the surgeon himself called to tell me that I was being diagnosed with a synovial sarcoma, and that he had already called a sarcoma specialist at Siteman Cancer Center to schedule me an appointment. My entire world fell apart around me in an instant. That’s not what I was expecting to hear, and I immediately felt like I was in my own personal nightmare that I couldn’t escape.
My first appointment at Siteman was terrifying, but I was lucky to find out that there was no evidence of any remaining disease at the original site, and there was no evidence of metastasis. However, due to the aggressive nature of my rare cancer, my oncologist directed me to start 6.5 weeks of radiation, and then 15 weeks of chemotherapy would follow.
Radiation flew by. Then chemotherapy started in December, and was laced with problems. Among them, I was admitted to the hospital with neutropenic fever, I had to receive several blood transfusions, I pulled a muscle in my back that hurt so bad I could barely breathe. It was a rough time physically, mentally, emotionally, you name it.
Finally in March of this year, I finished all of my treatment and was declared “NED” or No Evidence of Disease, as they say in the cancer world. I’ve been NED on each recurring scan since then, and I literally am grateful for every single day that I’m alive. I actually feel happier than I’ve ever been because I have a second chance at life.
I was lucky enough to meet Cara, the founder of this great organization, through a friend and co-worker of mine before I started any of my treatment. She and Lauren checked in with me regularly and definitely gave me the hope and encouragement that I needed to get through everything. I don’t know where I would’ve been without their support. Now I get to pay it forward as a board member with Hope. On one hand, I wish the need for this organization didn’t exist, but I’m at least glad that I have the opportunity to make a difference and help others.