When I first learned from my surgeon that I had Synovial Sarcoma, I was truly stunned. I was in the prime of my career working at Yahoo as a project manager for the kids division. I was traveling to exotic places for business meetings and finally feeling like I had made a leap in my career. Then a small, painful bump on my hamstring, a short operation I was told not to worry about, and an emotionless meeting with a group of doctors changed my life forever.
A malignant tumor, Synovial Sarcoma was the name of it, "it’s rare... You have to leave work, you need radiation, you need chemo, and you need a port". It was truly a blur...
I remember going home and surfing the web for two days straight. I hardly slept. My mother pleaded with me to rest, but I was relentless. My leg hurt. I needed to find someone that survived this cancer. I wanted to know if I had a chance. At some point, I recall wishing I had HIV as it would have been so much easier to find others to talk to. This was not the case though. I have some weird cancer that the doctors told me was still very mysterious to even them.
Finally in the darkest hour of this two day internet marathon, I stumbled upon a bio of a man that was a synovial survivor. Not only that, but he was successful and having a good life! I wrote him immediately. The next morning I was in his kitchen in Topanga Canyon, having a cup of coffee, and then I finally cried. It had been the first time...
Kirk helped me in so many ways from then on. He became the only one that truly understood what it felt like to feel alone on the planet. Once I started chemo, I was surrounded by sarcoma patients and felt less alone, but Kirk and I would have coffee every week to talk about how things were going. He was such a positive and great listener. He was a game changer for me, and I felt him with me through every scary radiation treatment, to chemo session when sometimes I was the only one in a long row of empty chairs just waiting for that last bag to finish...
Fast forward five years now, and I now live in Portland, Oregon. I have had no reoccurrences since my initial treatment and no metastasis of the cancer to any other parts of my body. There are many others that have had this same experience. Sometimes they choose to try and forget it all and put the cancer world behind them. This is an individual choice. As for sarcoma patients, most understand that emotionally, this isn’t something that really "goes away". Even five years out, I still tense up before every MRI and CT. I imagine I always will.
There are a myriad of stories that a sarcoma patient will hear through treatment. I have lost dear friends I have met along the way and have known others that are thriving and have great families. Please remember that everyone is truly biologically different and will have a unique outcome. There are no absolutes with sarcoma besides that it’s scary. For me it really helped knowing some that had made it through some of the darker tunnels of treatment and are alive and happy.
Now I can say I’m one of them. :-)