I was treated for Plantis Fascitis by a podiatrist for 18 months. One day I went in to see my podiatrist on crutches, as the pain was pretty horrendous, and I said to him, "You need to chop this foot off," with a half-serious smile. He sent me for an MRI, and the very next day I was called to his practice. He told me he wanted to send me to an orthopedic oncologist in Gainesville. As soon as I heard the word "oncologist," my stomach went in knots and my mind started to race. The first thing that came to my mind was my two kids, but it was all surreal in many ways. I didn't feel ill, and I couldn't possibly have cancer, so I was convinced they would find that it was nothing serious. How very wrong were my thoughts back then. They did a biopsy on my foot, and when I came out of the anesthesia I was told I had cancer.
The tumor in my foot was 12cm x 5cm, which was a fair rotten beast in my size 8 foot. My wonderful doctor sat my husband and me down and told us the seriousness of it. He told me the cancer was synovial sarcoma, an extremely rare form of cancer. He told me me due to the size of the tumor and because it was entwined with all the sinews and arteries in there that removing the tumor may render my foot useless. I remember listening with a heavy heart and a deep fear. He said he wanted me to consider a below knee amputation and I would probably walk again. I couldn't believe what I was hearing, that I might not walk again. I would also have a course of chemotherapy just in case there were any stray monster cells lurking within me. After I left his office, I cried and cried and cried. I cried for my kids, Laura and Sean; I cried for my husband Mark; I cried for my beautiful Mum and I cried for the leg I was going to lose that had been with me all of my life. After I did all that crying, I decided I was going to do this. I was going to beat this monster and I was going to walk again.
Recovery and Life Now
I was in hospital 5 days for the amputation. I was terrified to look at my leg, but I got used to it. I was up the next day on one of those Zimmer frames, trawling the corridors of Shands with a determination like no other and with no more pain in my foot. I endured three courses of chemo; it was like acid flowing through my veins and it took me to depressing slumps of nothingness. I had my family with me, and they pulled me out of the slumps. During all of this, my family and I still had our sense of humor. In fact, we had never laughed so hard about the most silly things. The chemo was soon over and I could focus on walking again.
I had a prosthetic leg fitted so that I could learn to walk. In no time I was walking without a cane, without a cane and WITH hair. It was a whole new me. Life has never been the same since I lost my leg; we all take having two legs for granted. I do things a lot slower, but there is nothing I can't do with my new leg. When I was just finishing my third course of chemo, I went scuba diving. I swim in circles, but who cares (haha!). Just before I go for my six monthly CT scans I regress into darkness for fear of metastasis, but I am sure that is normal. My family gives me strength, and I have even acquired myself a beautiful little grandson, Oliver. Synovial Sarcoma changed my life completely and I have learned to never take anything for granted. I look at the sky more, I listen to the birds sing and feel the grass between my toes on my good foot. Life is grand and so is being alive!
Thoughts and Hints for New Patients
I wish I had an MRI of my foot earlier - then maybe they could have saved it. My advice to anyone out there is to use your instincts, research doctors and choose the options best for you. Never give up, there is too much living to do.
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Copyright © March 2013 Liddy Shriver Sarcoma Initiative.