Hello and welcome to The Sarcoma Alliance. My name is Suzanne Leider. I am the founder and president of the Alliance and an 8-year sarcoma survivor. My life with cancer began in 1992 when I was diagnosed with a synovial sarcoma in my right thigh.
When I was 25 I was a frequent jogger and one day noticed some tenderness in my right thigh. Not believing it was anything more than muscle strain, I dealt with the discomfort by cutting back on my running, stretching and taking an occasional Advil. The pain did not subside and a lump began to appear at the site of the pain. At the time I had just finished nursing school and was working my first job as a Registered Nurse. I knew in the back of my mind that I needed to have this lump checked, so after a month of procrastination I found an orthopedic surgeon and underwent some tests and procedures to find out what this mass could be. After many x-rays, aspiration attempts and a MRI I had the lump surgically biopsied. After agonizing days of waiting for my biopsy results I received a phone call from my surgeon urging me to make an appointment with a nearby Orthopedic Oncologist who would tell me about my “malignant” biopsy results.
Two weeks after my diagnosis I underwent surgery on my right thigh. I followed this up with a full course of radiation therapy, which I managed to do on my lunch break at work. I maintained a busy work and social schedule and physically I recovered quickly. Emotionally I was in uncharted territory and wrestled with strange and terrifying thoughts. My youthful visions of having my whole life ahead of me vanished forever. My views on life and a long future had been shattered and I needed to pick up the pieces and make sense of my new reality. With the support of family and friends I began the painful process of coping with life with cancer.
Since my primary diagnosis I have had four metastatic recurrences. After four years of living cancer-free, a lesion was found in my right lung on a routine follow-up x-ray. After much deliberation, research and soul searching I had a thoracotomy (surgery on my lung) to remove the lesion and followed that with four cycles of chemotherapy (2 Ifosfamide cycles and 2 Adriamycin cycles). Once again I was faced with the mental work of cancer and for the first time I really faced my own mortality.
Nine short months later I was experiencing terrifying and intense pain in my chest that woke me up in the night and was again diagnosed with metastatic disease. This time there were two tumors in the right pleura (the lining of my lung). I was told that due to the location and size of the tumors they were inoperable and my prognosis was grim. My physician and the hospital staff reassured me that they would keep me as comfortable as possible. However, I was not yet ready to give up the fight. Once again I delved into the research and actively sorted through my medical opinions. I chose high dose chemotherapy (Ifosfamide) and with much trepidation began four brutal months of treatment. The chemotherapy shrunk my tumors to an operable size and I underwent another thoracotomy to remove the residual tumor along with a rib, some lung tissue and some of my chest wall. The surgery was intensely painful but worth it…the cancer was 99% killed by the chemotherapy. I followed the surgery with 5 weeks of radiation therapy. After almost 6 months of debilitating fatigue and pain I felt stronger and returned to work part-time and began fulfilling a life dream of attending graduate school to become a nurse practitioner.
In December of 1998 and February of 1999 I had two more metastatic occurrences in my right chest and pleura. I underwent two more difficult surgeries, more chemotherapy and radiation. As I write I am disease free and enjoying a relatively calm period in my life. I have made the decision to seek complementary/integrative therapies to boost my immune system. I am using Chinese medicine, yoga and meditation to help quiet my mind, center myself, and live each day in a conscious purposeful way. In addition, my commitment to helping others with Sarcoma has brought new meaning and vigor into my life. I have made many valuable discoveries through my experiences with cancer. My life and relationships have taken on new meaning.
I tell my story not because I am the only one who struggles against cancer but because we need to share our experiences of living with cancer. Far too many people have similar and even more intense struggles with illness. I believe we can learn so much from one another. Through sharing we heal.
In closing, I would like to share two simple messages that can profoundly impact the life of a cancer patient. First, for those who have a diagnosis of cancer, maintain your follow-up appointments and tests. Until there is a cure, I believe that early detection is essential in the fight against cancer. Do not become complacent about follow-up testing and bring this up with your physician if nothing has been recommended for you. Secondly, never succumb to the belief that your life is on hold because you have cancer or that cancer defines who you are. Strive to live, experience and thrive in the midst of cancer!
After a 10 year struggle, Suzanne passed away in August 2002. She entered into a hospice program earlier that year and chose to “Strive to live, experience and thrive in the midst of cancer!” Her days were spent enjoying her favorite things: her garden, reading, listening to music, watching classic movies and spending time with beloved family and friends. Throughout her struggles with cancer, she also worked hard to build the foundation of this organization. Her dream was that the Sarcoma Alliance would continue to survive and grow for years to come. Suzanne’s positive spirit and deep desire to help others with sarcoma continues to live on in the work of the Sarcoma Alliance.
You are not alone. Thank you for your support.