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.
Cancer doesn’t discriminate by age, race, sex or religion. It doesn’t matter how good of a person you are, if you exercise five times a week or zero, or if you eat all the daily recommendations of fruits and vegetables or a pizza for lunch every day. A cancer diagnosis can happen to anyone, out of the blue, and out of the blue you’ve met one of life’s greatest teachers.
My story with cancer begins, honestly before I can even clearly remember, at four years old with night pains and aches early in the summer of 1999. For a while, these aches and complaints were thought to be from growing pains. Months later during the holiday season I was “dancing,” really just aimlessly spinning in lots of circles, to my great grandma’s piano playing when I fell and hit my hip on the piano bench.
After the seemingly benign incident, I continued to limp for six weeks during which time my family took a trip to El Salvador to visit my mom’s side of the family. I vividly remember going to the beach and sitting at the edge of the ocean where the waves crash along the sand, just staring at my right leg moving back and forth with the ocean’s rhythm, completely out of my control. Unfortunately, the trip had to be cut short because at this point my parents had a feeling it was not just growing pains.
Upon our return home to Montevideo, we went to the local hospital for x-rays. The physician there referred my case to an orthopedic specialist in Watertown, who then referred me to Dr. Clohisy at the University of Minnesota. An MRI was inconclusive, so a biopsy of my hip was performed in order to diagnose and stage my cancer. In January of 2000 I was diagnosed with Stage IV Ewings sarcoma of the right hip with metastasis to the lungs. My parents were told that this diagnosis accompanied an estimated 30% survival rate to five years. My parents made the decision to fight, and chemo started in February of 2000.
My chemotherapy regiment included Vincristine, Etoposide, Cytoxan, Ifosfamide, Adriamycin, and at the time experimental amifostine which was used with the intent of protecting internal organs from high doses of chemo. The lung metastasis cleared up within the first two rounds of chemo, and six weeks of radiation followed. The tumor/hip resection was done in June of 2000, and the primary tumor was found to be completely dead. My wonderful medical team, and my mom’s many Dairy Queen runs for foot-long hot dogs since that is all I would eat, paved the way to a win against cancer. Chemotherapy was concluded in July of 2001.
Never in my life did I feel the excitement of advancing from JV to varsity in a sport, nor feel the pain/motivation of being cut from a team, as I was just not allowed to play sports that would put my leg at risk for injury. I have never felt the natural muscle memory of taking my bike out for a joy ride; I don’t own one because my hip is fused. I have never run a 5k or signed up for a community race because my hip doesn’t allow me to run far and, to be honest, my lungs would probably feel like exploding.
But, I have felt the joy of feeling my lungs grow stronger with consistent elliptical use. I have watched the muscles on my arms and back be sculpted with proper weight exercises. And I have been overjoyed by the ability to jog (pretty slowly) a mile after strengthening my leg muscles with consistent exercise. My life is different because of cancer, but it is not worse than anyone else’s. Cancer has forced me to be adaptable, to not compare myself to others but to aim for the best version of myself.
I obviously did not learn all of this at once, or on my own, I had cancer as my teacher and my parents as my biggest supporters. My parents have helped me to see that my inabilities will only impact me as much as I let them, and there is more to life than the physical bodies we are given. They have fought for me to embody and appreciate my individual experiences and differences, while attempting to allow me as “normal” of a life as possible. Cancer has taught me to love and appreciate every day and feel motivated to live a life full of love and happiness. This might sound a bit cliché, but when you spend so much time afraid, afraid of not having “enough” time or even “more” time, each day gains so much more meaning. The feeling of being loved, seeing a beautiful scenery, seeing my loved ones succeed as well as the negatives like fear for a recurring illness or loss of someone I care about so easily bring me to tears.
Cancer taught me to embrace all feelings. I believe it is life’s way of reminding me that we only have one, and because of so many people willing to fight for me I am here today. My cancer diagnosis has taught me to appreciate and value my body, it has allowed me to explore and embrace my emotions, and it also introduced me to the world of medicine. Since the original diagnosis I have had too many surgeries to count, and have had amazing healthcare professionals become a part of my life.
Cancer, although pretty forcefully, introduced me to my life’s passion. I am now a happy, healthy, and currently a little stressed 23-year-old medical student at the University of Minnesota Medical School Duluth. Since the time I was diagnosed, I have wanted to be able to give back to other families what my physicians have given to mine. Aside of course from my momentary fallout with the medical profession at seven years old when I wanted to become a pop star, I have always known in my heart that life has provided me these experiences for a reason. I look forward to the day when I can embody my experiences and knowledge to help patients and families just like mine.