Life — The Adventure

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Jamie skiing in Europe days before his diagnosis
Jamie skiing in Europe days before his diagnosis

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.  

Jamie riding mountain bike this summer after completing both Doxorubicin treatments
Jamie mountain bike riding this summer after completing both Doxorubicin treatments

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).  

Jamie hiking and skiing Mt Lassen the week after first Doxorubicin treatment - Memorial Day 2013
Jamie hiking and skiing Mt. Lassen the week after first Doxorubicin treatment – Memorial Day 2013

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.  

Jamie Schou hiking and skiing Mt Lassen week after 1st Doxorubicin treatment - Mem Day 2013 (2)
Jamie hiking and skiing Mt. Lassen week after first Doxorubicin treatment – Memorial Day 2013

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 on the bay after first Yondelis treatment
Jamie on the bay after first Yondelis treatment

 Jamie was age 33 at the time of diagnosis.  You can read more about Jamie on his blog at http://betweenthechemos.blogspot.com/.

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