In November of 2002, I found out that statistically speaking, I had weeks to live. No one in the world had ever survived a relapse of my type of cancer following a stem cell transplant. Despite this, I have always said that, “Cancer is the best and worst thing that has ever happened to me.”
The year was 1998 and I was a 15-year-old school sophomore. On December 4 th my legs and chest had the sensation of feeling asleep.
An egg-sized tumor was strangling my spinal cord. My breathing was slowed and shutting down my body. We met Dr. Bob, and he became the first good thing in my whole experience. Then came the fact that I did not die that weekend.
After the surgery I regained all feeling and suffered no paralysis but was diagnosed with Askin’s Tumor, a very aggressive, rare and relatively unknown type of cancer found in only 3 to 30 people world wide each year.
Chemotherapy began immediately. My friends became excellent at skipping classes to visit me. I prefer to remember these instances. Nevertheless, the hard memories seem to have a way of haunting me.
A positive event included my baldhead. Being a natural artist, my baldhead became a challenging canvas for paining designs, airbrushing, and more. If people were going to stare I might as well give them something to see.
After a year, I was gladly done. It was hard to adjust because people assumed that I would go back to the way I was pre-cancer. I constantly struggled with feeling older and that was (and still is) challenging.
In December of 2000, stem cells were taken from me. While studying them, cancer cells were discovered. It was very discouraging but I was not ready to give up.
For the next 5 months I was more in than out of the hospital. During one of these stays, Randi, a fellow cancer patient, was in the ICU. She was fading quickly from a courageous fight with cancer. In her last hours, she looked at me over her oxygen mask and forcefully told me, “Rachel, I will keep fighting in heaven and you must promise me that you will never stop fighting for all of us here.” I have never broken my promise.
I missed the second half of my senior year. I graduated with my class, got into some colleges, had a serious boyfriend and kept up with friends during this crazy time.
For transplant, I started one of the most intense regimens of chemotherapy that exists. It successfully killed my entire immune system and brought me as close to death as possible. A few days later frozen stem cells were put into my IV to grow a healthy immune system.
Then it was discovered that I had 2 extremely serious infections.
Fall came soon enough and I started college. Once again my body was screaming at me that something was wrong. Struggling to keep everything together, I made the decision to stop.
We learned a new Askin’s Tumor was fighting my body between my heart, lung and spine. We had exhausted our medical options. I had weeks to live. But there is always hope and I decided to try for a miracle! I would live each day and be grateful for that.
Three months amazingly passed and I seemed all right. I got a job at an art materials store, started dating a fellow cancer survivor and got on with my life!
In the fall, a whole year having passed, I was still alive. My doctors had scoured the globe for options from clinical trials to radical surgeries and new radiations. Some of the ‘Experts’ said I should be on hospice or trying to remove the tumor would kill me. In any case, I definitely would not be cured in their eyes.
By May of 2004, an amazing thoracic and cardiovascular surgeon came to my hospital. He considered my case and wanted to take the tumor out. Surgery went very smoothly as he removed all of it, which by this time we athe size of a small Nerf football. The tumors biopsy results showed the tumor had completely died inside me with very little treatment. In medical terms, it is a complete miracle and very unexplainable.
It has been four years since that surgery and I am the only known case to survive a Relapse of Askin’s Tumor following a bone marrow transplant.
I try to balance all the cancer advocacy and events in the cancer world with all the non-cancer things like school. I have accepted that cancer will never leave me. It is embedded in me with what it has left behind – physically, mentally, emotionally and spiritually. Cancer is the absolute best and worst thing that has ever happened to me. Because of it, I am driven to become an art therapist and continue helping others through my speaking, my writing, my art and volunteering.
My medical expenses (even with amazing insurance) still total roughly $10,000 out of pocket per year because of long-term side effects of the cancer and it’s treatments.
I will be using the money for tuition so that I can pursue the last 2 years of my bachelor’s degree towards becoming an art therapist.