My sarcoma story begins in 2005. What I thought was a charley horse in my left calf for about nine months turned out to be a Synovial Sarcoma inside my Soleus muscle. Quite by luck, my first doctor sent me to the University of Minnesota Masonic Cancer Center rather than “cut it out first and then biopsy” – which is not good for sarcomas! During my first visit to the Masonic Cancer Center, I was afraid but confident it was the right place. I had expected a long drawn out assessment, but Dr. Clohisy had me on the table taking needle a biopsy first thing. He said that Sarcoma tumors are relatively rare, but they are the only thing he and his specialized team treat.
After nine months of chemo, surgery and radiation, the team was able to “salvage” my leg. They had been telling me it would most likely require amputation. In fact, they said 10 years earlier, amputation would have been automatic but newer therapies allowed limb salvage.
Early in my treatments, Dr. Clohisy recommended I attend the Rein in Sarcoma picnic for sarcoma patients, survivors, and families. My wife and I attended and met Pete and Sue who had lost their daughter, as well as several sarcoma survivors. They have all welcomed us and shown a great amount of support. We have tried to volunteer and donate over the years to show our appreciation for the great job RIS does.
So, 15 years after the removal of my soleus muscle and seven weeks of radiation, I have walked with a limp and have almost daily aches and pains. I am grateful to be alive and have a leg. I accept the pain as part of the deal. In 2019, my wife and I attended a University of Minnesota Survivorship. We were happy to see Janelle and others from RIS exhibiting there. One of the seminars had to do with nutrition and exercise correlating to secondary cancers in survivors. By chance, we ran into family friends who told us the speaker for that session was their daughter’s breast cancer oncologist and she was fantastic. Dr. Blaes made quite an impression on us and we went to see her afterwards to enroll in the long-term survivor program at the University of Minnesota.
One of the things Dr. Blaes suggested was attending physical therapy to help my damaged leg function. The progress in using my leg and being able to walk better with less pain far exceeded my expectations. The staff at Stepping Stone Physical Therapy were a godsend.
In summary, getting involved with Rein in Sarcoma and the UMN Masonic Cancer Center has brought us much healing and support. I strongly recommend both organizations to sarcoma patients and survivors!
Check out the University of Minnesota 2021 Virtual Survivorship Conference scheduled for April 17, 2021.