My Sarcoma Story – Bill
I am 49 years old. I was diagnosed with Synovial Sarcoma when I was 23. It was a dark time that I just wanted to forget. I have not been good about disclosing my story or being an advocate for awareness. That changes right now.
I was very fortunate. My brother was a young doctor at the time. We had a chance encounter that brought us back to my Mom’s apartment in Waterloo, Iowa. He noticed me rubbing my thigh, my back, and I was tired. I probably would have blown it off. My brother was concerned and checked me out. One thing led to another. It was rare. I was referred to Mayo Clinic in Minnesota. Another great blessing for me.
The chemo, radiation, and surgery were harsh. I met much younger kids who were so incredibly brave. I don’t remember any of us getting down. A couple I learned did not survive. I can’t imagine the pain for their families. In their memory, I do my best to accept whatever challenges come my way.
Due to great healthcare, a good strategy, love and support from friends and family – I was able to survive and move forward. They were able to save my life and my leg.
I have had a number of secondary health issues, but I have lived a very full life since my recovery. I used to run half marathons and do all kinds of adrenaline inducing crazy stuff. Today, it’s more about my golf game and I exercise at least 5 x per week. I’ve been able to travel all over the country and world. I own a business and that brother and I are starting a new business as well. Life is good.
Words of Wisdom: Some advice for myself and other survivors:
1. Advocate for Awareness – Sarcomas are rare and not well known to the public. Also, they hide in our body undetected. We probably have an obligation to tell our stories. Parents need to be aware that if their child mentions anything about a lump or bump – get to a doctor immediately.
2. Lymphedema (LE) Awareness – Be aware that lymphedema is a serious secondary condition you could develop. About 30% of sarcoma survivors end up with LE. If you’ve had lymph nodes removed or damaged, LE is a possiblity. Like sarcoma, it can sneak up on you. I was not aware LE was a possiblity. Many years after cancer remission – I ended up in the ICU with an infection, sepsis, and septic shock (organs shutting down). That’s how I was introduced. I now manage the swelling in my leg with special compression garments, a pump, and Manual Lymph Drainage. I think if I had been more aware, I would have been able to manage it earlier and avoid the life threatening episode.
3. Reach Out for Help – We are all warriors, but I have finally realized you can’t keep this stuff tied up inside forever. Not “being real” has caused me to be distant and it has impacted my relationships. It’s not easy to talk about being scared or a little disappointed, but you aren’t doing yourself or anyone around you a favor by keeping it to yourself.
My advice to those fighting sarcomas today – you got this!!!! NEVER ever give up hope. Better times are around the corner.
Role of the Sarcoma Foundation of America: I’ve read the current statistics. I guess they may have been worse when I was diagnosed, but they are still very haunting. About 50% of sarcomas are resistant to chemotherapy, radiation, and surgery. For the most part, we are talking about kids! Its just unacceptable. Funding for new therapies and trials are so critical with sarcomas. It’s not a well known disease. The Sarcoma Foundation of America is our home for resources, awareness, and advances in medicine.