TELL YOUR STORY
We invite you to tell us your
sarcoma story, as a patient,
survivor, or as someone who has lost
a loved one to sarcoma.
Type of Sarcoma: Malignant Fibrous Histiocytoma (MFH)
aka Undifferentiated Pleomorphic Sarcoma (UPS)
Diagnosis: February 2003
Location: Hand, Arm
A cancer diagnosis takes us on a journey. Each cancer journey is a unique one. There is no one right way to face cancer. My comments are only from my perspective - informed by my experience with Malignant Fibrous Histiocytoma, the most common form of soft tissue Sarcoma.
I am a right-handed woman, wife, mother, grandmother - and a cancer-free, left trans-radial amputee. In February 2003, I was a left-handed woman, wife, and mother in apparent good health. I ate reasonably well, was physically active, had annual check-ups, did yoga, attended church regularly, volunteered in the community, and even read to four-year-olds weekly! But as Rabbi Mordechai Kaplan put it, “Expecting bad things not to happen to you just because you are good is like not expecting the bull to charge just because you are a vegetarian!”
I had a soft, non-painful lump on my left wrist that I ignored for about seven weeks – hoping that it would go away. An MRI revealed a six-inch long mass, beginning in my hand, filling my wrist and extending into my forearm. Dr. Denis Clohisy, an orthopedic surgeon at the Masonic Cancer Center University of Minnesota, performed a biopsy March 14, 2003, and gave me a diagnosis of a very high grade, non-metastatic Sarcoma – CANCER. My prognosis was good (40- to 65-percent survival rate) with a treatment package that included three rounds of chemotherapy, radical surgery, and possible chemo post-surgery. I told Dr. Clohisy that I would not accept amputation: he encouraged me to accept – to choose life - without my left hand.
I looked at my treatment package as a Pandora’s box. If I accepted it, I would receive something life altering, disfiguring, yet potentially life saving, but with no lifetime guarantee. Dr. Clohisy assured me that the goal of my treatment was to be cancer free. I made my choice and became very proactive in pursuit of that goal.
Cancer is a very powerful and proficient teacher. The fear that the cancer will return is always there, but that is a gift – to remind me everyday to live, authentically. I feel fortunate to be alive and am strong, fiercely independent, and determined. Everyday I am confronted with something that is two-handed. And everyday I am given the opportunity to learn to do that thing a new way, to ask for help, or to decide gracefully never to do that thing again! I now know the difference between things that I do and don’t do as opposed to the things that I can and won’t do. In his book "The Beethoven Factorb" Paul Pearsall, Ph.D., describes “thrivers” as those who “know when to hold ‘em and know when to fold ‘em.” According to that description, I am a thriver.
I enjoy sharing my story and the lessons I have learned from my cancer journey with a broader audience. Please contact me if you are interested in engaging an inspirational/motivational speaker.