Ewing ’s sarcoma wrapped around the spine
Age at Diagnosis: 29
Date of Diagnosis: January 1996
Location: Southern California
Hospital: City of Hope
Hello, I am a 10 year Cancer Survivor. The medical term for my cancer is Ewing Sarcoma: peripheral primitive neuroectodermal tumor.
My journey begins with a layer of denial. The year of 1995 involved hours with orthopedic doctors. My lower back pained me but they said it was all in my head; stress was the diagnosis. I’d exercise more, take 8 vicoden a day, and be back in the doctor’s office for a shot of cortisone. January 26, 1996 I called my parents. My dad answered, I wished him happy birthday and asked to speak to my mom. Mom got on the phone, I told her I refused to take anymore pain killers. The pain had reached such agony I needed their help to get me to an emergency room. The pain was so great I couldn’t walk on my own.
Mom and dad drove me to a nearby emergency clinic where I was swept right past others to the back. My vital signs were a concern to the intake nurse. What are the odds that the ER doctor that day was the same doctor I’ve been seeing for the last year, the cortisone, and vicodin man. He actually acted upset and asked me what I wanted? Turning to my mom, I asked her to get me back home now, keep me alive for the weekend while I searched for a better reputable doctor. By Monday the insurance company allowed me to be seen by a neurosurgeon, that evening, at 5 pm.
Surgery and Recovery: Dr. Sanford observed the MRI along with the agony of pain I presented and scheduled surgery the next day. The original surgery was for a lumbar laminectomy for a herniated L5-S1 disc performed Tuesday, January 31st. During the operation he surmised this was bigger then just a herniated disc. The doctor closed the surgery. He had me transferred to another hospital where on February 2nd I was re-operated for a sacral tumor to be excised.
When the second surgery was over, the doctor walked to the waiting room to speak to my fiancé, mother, and father. He told them he was sure the tumor was malignant but slides of the tumor will be sent for a more definitive diagnosis.
I awoke in the ICU, where I finally learned why I had so much pain. A 2.4 X 2.6 X 2.8 cm tumor mass had wrapped itself around the S1 vertebra and included the left S1 nerve root. During the excision of the tumor they had to cut the nerve, leaving my left foot paralyzed. My energy went into finding another route to get that foot to move. The next 3 months, with physical therapy and family support it was all about getting back to a “normal life”. Which I did. By mid April I returned to work as an 8th grade science teacher. By then I walked with the aide of a cane.
Diagnosis: April 1996, a Thursday night, I was watching ER when the phone rang. The neurosurgeon called me, after 9 p.m. He apologized for calling so late but the results of the tumor indicated a possible brain cancer. He wanted me in tomorrow morning for a CT of the head. I immediately called my parents.
The CT of my head came back normal, but by then the tumor results had been revised. This time the pathology report came from the University of San Francisco. They concurred with an extradural small cell malignant tumor, possibly extraosseous Ewing ’s Sarcoma. I was to report to the local hospital to receive my treatment.
Treatment: The protocol was a 56 week treatment. 5 days in the hospital given Ifosfamide and Etoposide, 3 weeks later back in for Vincristine, Cyclophosphamide, and Adriamycin. At week 9, radiation began with chemotherapy. They called this the sandwich effect; I called it the zombie stage. A total dose of 6660 cobalt cGy equivalent was delivered to the S1 vertebral body in 37 fractions over 37 treatment days and 52 calendar days. Subsequently a 2700 cobalt cGy equivalent proton boost was delivered to the S1 vertebral body.
In medical terms this often reduced my blood cell counts to .8. I want to thank everyone who has ever donated blood and I send a hug to those who have donated platelets. I felt like a new woman whenever I received those transfusions.
It was time for the denial to melt away. I had no time for anger. My journey fluctuated between depression and acceptance. My fiancé accepted me the way I was, he still wanted to marry me. We did not marry on our intended date of June but the weekend before chemotherapy started. That way I had wedding photos with my original hair. He and I only called our parents that Friday night to invite them to the ceremony on April 28, 1996. We imagined 5 of our close family in attendance. When I walked down the aisle of the church it was filled with over 100 loved ones. They had called our friends and other family members and even coordinated food back at the house with a DJ.
My 3 earth angels continued to support me through that incredible protocol. My mom and dad would stay with me during the day in the hospital; my husband would relieve them and stay with me through the night. He would then go to work and my parents would come back to cover the next day. My mom lost her job because the time she took off to be with me. Dad was “downsized”; he had to deal with his emotions of loosing a job and a real possibility of loosing his oldest daughter.
Life now: It is amazing now how some of my fondness memories have come from this nightmare of Ewing Sarcoma. Today I am considered a 10 year survivor. So is my husband, my mom and dad, my siblings, and those who choose to be apart of this journey. I have worked hard to attend numerous 5K walks raising money for cancer research. While in the hospital I created a bucket list – the list of adventures I want to accomplish before I, well, you know. This last month I reached one of those goals, I participated in a 60 mile, 3-day, cancer walk-a-thon. Once again, at the end of those grueling miles were my husband who gave me a rose, my parents with tears in their eyes hugged me, and my sister who walked with me over the finish line. I choose to live life to its fullest!
We have all chosen to be better as a result of Ewing Sarcoma.
We are better at loving each other without judgment.
We are better at appreciating the precious moment.
We choose to recognize the gift we have in life.
Thoughts and Hints for Patients: I am amazed at the amount of emotions I went through! At first the anger kept me thinking about the strawberry shakes I avoided to keep healthy; I never smoked; I didn’t like to drink alcohol…I worked out 5 times a week. Suddenly I felt like smoking, getting drunk, and drinking strawberry shakes. I was even surprised at how much I did not want to die. I played the bargain game, hey God let me live and I will never complain about a bad hair day again. Little did I know that bargain was going to haunt me in the coming weeks of being bald. You know I never really drank or started smoking…however I do have strawberry shakes whenever I want to!