By guest blogger, Jamie Schou
In January 2012, after experiencing some soreness in my ribs, I went to my chiropractor for an adjustment. He was working on my back when he noticed a large mass. After an unsuccessful surgery at a local hospital – the surgeon thought the mass was a Lipoma – and lots of searching, in March of 2012 we found an orthopedic surgeon who determined the mass was a Synovial Sarcoma.
I went down the usual path – chemo, radiation and surgery. The sugery was a 16 hour ordeal. The tumor was deep in my muscle, ribs and spine. As such, they removed a lot of that – my trapezius muscle, portions of four ribs, and portions of vertebrae. The doctors placed rods in my spine from T2 – T9 to support the area where they removed vertebrae.
They also removed my latisimus muscle and placed it in the void made by the resection. After 4 doses of high does Ifosfomide post surgery I was deemed clear of disease.
In April 2013 my scans showed mets on my lungs. A wedge resection of some of the tumors and a biopsy confirmed the disease had spread. I have since received two doses of Doxorubicin (unsuccessful), two doses or Gemzar + Taxotere + Morab antibody (unsuccessful), and I am now on Yondelis (one treatment so far).
I am not sure what my future holds. The doctors said I could be on Yondelis for years to come if it proves to work. If it doesn’t, we move to the next option. I was hit hard at the prospect of indefinite chemo, but I quickly decided to adapt to my new situation and make the best of the time when I feel good.
I told myself that with every couple of weeks that I feel good, I will get outside on an adventure that I have always wanted to do.
Hike half dome, paddle board around Lake Tahoe, hike and ski great peaks. I promised myself that I would hold on to my happiness and live my life to the fullest – all while continuing to fight and NEVER giving up!
So, I still mountain bike, hike, ski, paddle board, and push myself to go on the adventures that I’ve always wanted to do. This week a friend and I will paddle board around Lake Tahoe. I will continue to live a life of joy and adventure while I fight like hell.
Jamie was age 33 at the time of diagnosis. You can read more about Jamie on his blog at http://betweenthechemos.blogspot.com/.