Rachel’s Story

Rachel, Askin's Tumor SurvivorAskin’s Tumor at the spine
Age at Diagnosis: 15
Year of Diagnosis: 1998
Location: Midwest

Diagnosis: I was playing high school field hockey (fall 1998) and my back hurt more and more each day. The pediatrician thought it was from my backpack being too heavy. Then basketball season started and it was hurting even more. One morning I woke up and my feet felt strange. I didn’t think too much of it. The next day my legs and chest were numb. We called the orthopedic doctor (since I was so healthy and only broke my arm once). They said it sounded neurological and gave us names of neurologists. Well one could schedule me in a month, another on Monday (it was Friday). My mom was on the phone with my dad trying to decide what to do and the third neurologist broke into the phone line and said he was off that day but to come in anyways. He did some tests and when we returned from the MRI, he had an oncologist, surgeon, anesthesiologist, etc. lined up.

I had an egg-sized tumor pressing on my spinal cord at T3 and T4. It was already rapidly suppressing my breathing and emergency surgery was in order. I had the surgery early the next morning. Thankfully I regained all my feeling during surgery. I started chemotherapy within a few days when it was determined it was Askin’s Tumor (in the Ewing’s Sarcoma family) It all happened so fast but I recall comforting my mother and worrying about letting people know about what I was going to miss. From the first minute of this crazy journey, I accepted it and whatever I had to do to get through it, I just would do it.

Treatment: I had emergency surgery Dec. 5, 1998 for my first tumor. They removed as much as they could of the egg-sized tumor but it had spindles that went all over. I did a year of chemotherapy–I had a “lovely” time with VP16 and Ifosamide every 6 weeks. Then every 3rd week in between I’d have “fun” with juicy red Adriamycin (the word still makes me shudder) and Cytoxan. Vincristine was a weekly event until I had trouble walking in March of 1999 and it was stopped. In March and April, I had 6 weeks of radiation interlaced with the chemo.

I was in remission for 2000. December of 2000 stem cells were taken to store in case I ever needed them. While studying them, cancer cells were discovered. I was more IN than out of the hospital for the next 5 months. Cisplatin and Ironotecan were the enemies of choice this time. June 3rd, 2001 I was admitted for my autologous stem cell transplant. Days of fluids led to VP16, Cytoxan and thiotepa. I was in for a good 6 weeks and had many complications.

Another year and a half of remission followed. Then Nov. 2002, a new tumor was found between my heart, lung and spine. I had maxed out on a lot of chemo and had a lot of radiation already and a transplant. Everyone else who ever had Askin’s Tumor and relapsed after a transplant had died within weeks. My prognosis was nonexistent. Months passed and the tumor only grew slightly. I had a tiny bit of radiation and a tiny bit of chemo just to keep me comfortable and help with breathing. A year passed and it seemed stable and not growing. The PET scans showed little to no activity in the tumor region. In May of 2004, a cardiovascular and thoracic surgeon took the tumor out safely. It was the size of a small nerf football. When they biopsied it, it was completely dead. The doctors were baffled and it is a HUGE miracle. It is believed I am the only person ever to survive this long with my type after a relapse after a transplant. I have been in remission for 4 1/2 years now and just take it a day at a time–there’s no one to compare me to!

Recovery:I have come a long way but still deal with many long-term side effects and take various medications. I have a weak right lung from radiation, my knees have arthritis, my gall bladder was removed and my thyroid does not work so I take medicine for that. I also have hormone deficiencies and chronic pain in my back and legs along with chronic fatigue. My intestines are damaged from my transplant and give me some problems although with time, it has improved dramatically.  Despite all of these possible deterrents, I live a very active and full life . There have been lots of ups and downs physically, emotionally and psychologically in this journey.

Life Now: I received my Associate’s in Interior Design last year and am now finishing my bachelor’s in Studio Art and Art Therapy (to prepare for a Master’s in Art Therapy). I do art commissions (murals, furniture, t-shirts, logos, canvases, a little bit of everything). I travel quite a bit for cancer related events and speaking opportunities. I help out with cancer kids’ camps and do things for local and national charities having to do with various aspects of cancer and other causes. I am also a published writer, national inspirational speaker and maintain a blog- www.obsessedwithlife.com.  I was voted as Glamour magazine’s 2008 Woman of Your Year which was a very amazing honor. I am always up for helping people and meeting new people.

Thoughts and Hints for New Patients: Trust your instincts and speak up.  Ask lots of questions! Find a doctor that you feel comfortable with and is familiar with your disease. You can get through this. Take it a day at a time. Plan little things to look forward to: a trip, buying a new book, whatever it is. It’s key to have things to life for and work towards. Accept that some days are bad and some are good and that’s ok. Surround yourself with people who support you-not ones that bring you down.  And don’t ever underestimate hope!

Editor’s Note: Rachel’s poetry has been published here and here. She has also written an essay in Cure Magazine. Visit Rachel’s weblog to learn more about her and keep in touch.

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