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.

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!

Diagnosis: I first went to the doctor in 1986 complaining of numbness and soreness in my left elbow. They took an x-ray of that arm, and happen to catch the left side of my spinal cord in the film. The doctor was able to see that there was missing and degraded bone centering around my T1-C7 spinal column.

Treatment: I was referred to KUMED for diagnosis and treatment. They did a biopsy which confirmed Ewing’s Sarcoma. For treatment at the time I was on alternating rounds of Cytoxin, Actiniomyacin, Adriomyacin, and Vincristine. I also did Radiation for 9 months concurrent to the chemotherapy. By the time my high school graduation came around in May of 1988 I was free and clear. At least for the next 15 years.

Recurrence: In September of 2001 my back started hurting in the same area. It soon developed into excruciating pain. I went to the emergency room at KUMED, told them of my previous condition, and they did a chest x-ray, gave me a couple of vicodin said I was fine, and sent me on my way. Two days later, I walked, or rather hobbled myself to the cancer center there, where they confirmed through an MRI that there was a problem again. This time I had a biopsy, which confirmed it, and five other surgeries to relieve pressure and remove scar tissue from my spinal cord.

The first time had me maxed out on radiation and most of the chemotherapies that I had previously been on, so this round I was on Ifosfamide and Mezna. I have had countless MRI’s bone scans, gallium scans, Ct’s and X-rays over the years. To be quite honest the thing that got me through this last time was the narcotics they had me on. I was in excruciating pain so the dilauded certainly helped with that, but it also made my feeling numb as well, and let’s just say, I didn’t get really emotional during that time.

Because of all the surgeries this time I lost my ability to walk, and I had to teach myself to do that over a period of nine months.

Everything slowly got back to normal, and I took a really long vacation after everything was said and done. After that I got back to working full time again, and just went on with day to day life.

Life now: Everything was going fine until about six months ago. I started having some minor pain in my back which was determined to be a compression fracture by an MRI scan. I got help with the pain, but it quite never went away. Over the last five days, the pain has become excruciating, and last night I finally went to the emergency room. This time, they sent word to the Oncology team and one of the oncologists, Dr. Flemming came down and ordered an immediate MRI. I found out this morning that there is a mass outside my spinal cord on the left side causing pressure on the surrounding nerve clusters. The oncology team is coordination with my orthopedic surgeon, Dr. Burton. Looks like round three is coming up.

Thoughts and Hints for Patients: I really don’t have any helpful hints, or lessons learned or inspirational thoughts. For me this has been a lifelong battle, and it doesn’t seem like it’s going to end any time soon.

Diagnosis: I was diagnosed with Ewing’s sarcoma at age 29, six months after my marriage to my partner Elizabeth.

I have to know things for myself before I can really hear it from others and this is how it was with cancer too. I was working with various healers on my growing pain for months and there were many times where people in the medical field had a chance to catch my illness but didn’t. I had a significant dream and some intuitions but I didn’t know how to trust them. Finally we noticed that my eyes were dilating differently from each other (nerve damage from the tumor that went unnoticed for months), and I went into action.

I believe that it was hard for other people to see what was happening because I wasn’t ready to show them, let alone show myself. I have directed the shape of this journey the whole way, taking in the information available to me as soon as I was ready and then responding with my best.

Once I had my first chest x-ray it was clear I was in trouble and everyone sprang into action. I wasn’t expecting so much help in finding doctors and lining things up. Once I knew it was Ewing’s I also immediately started lining up a second opinion. Turns out the specialist in town was a horrible fit for me, so we went with the Mayo Clinic and were very happy there. The first weeks, still in pain, enduring fatiguing tests, and not knowing what will happen were definitely the worst.

Treatment: I fought cancer with everything that I had. I am an artist and spiritual seeker and these were my most important guides and healing therapies. I made art about my cancer, about mortality, and about healing. These projects gave me little bursts of energy and helped me share my journey with others.

I invited my friends and family to walk closely with me throughout my treatment. I sent emails out with each round of treatment and these were super-important for all of us and deepened many of my friendships. People brought us meals, went grocery shopping for us, sent oodles of cards, sat with me during treatments and this was really helpful and meaningful for both them and us.

I had chemotherapy and radiation. After my first round of chemo my pain disappeared and the bulge in my neck disappeared. Because of the location, surgery was very risky so we chose radiation. With such a large mass they explained that I’ll always have some lingering scar mass.

My chemo alternated between Doxorubicin/Vincristine/Cyclophosphamide and Etopocide/Ifosphamide. The protocol was for 14 rounds but my body could only take 10. Radiation was concurrent to chemo. I had one surreal experience where I was in the hospital getting my chemo during the end of my course of radiation and the head doctor came in and explained she thought the chemo/radiation combination was too dangerous for me. So she unplugged me and sent me home. It was a reminder that doctors don’t agree and as much as we all want to do the right thing so we get well, the right thing is not always clear.

Guided imagery played a huge role in helping me accept the chemotherapy and radiation treatments rather than fight against them. I found meditation a good alternative to napping (even though I was super-fatigued, my mind was always too busy for sleep). I had several blood transfusions.

Towards the end of treatment I was getting exhausted from the constant fight songs in my head. I had this intense week where I felt like I was falling apart inside and couldn’t keep up the fight. But now I see it as a huge turning point in my treatment and healing, in fact the place where my real healing began. I let go and trust a lot more now.

Recovery: My recovery was slow, with improvements and plateaus. I went back to work quarter-time after three months and increased my hours very, very gradually. Twelve months after treatment I finally had distance enough to grieve all that had happened. At 15 months from treatment I started feeling free of fatigue. Eighteen months later I was in weight-lifting classes and staying out late dancing, feeling like an ordinary person.

At about 2 years since radiation the sense of dense cloudy energy I felt around the radiated area is finally dissolving. I am more tense and tender on that side still and am careful about my sun exposure. I am bringing the sun parasol back into fashion.

I spent a long time writing and illustrating a semi-formal journal/scrapbook about my cancer experience. For example, I took the time to research the source of all my drugs and how they worked, stuff I couldn’t think about while I was enduring it all. I’ve also put together my beliefs about healing and wellness, and thoughts about how my world view has shifted. This project has been a really important part of my recovery.

Life now: When people ask me how I am now I say “better than ever.” Not only do I have my strength back, but I also feel so much more happy and free in myself. The future is always uncertain but I take refuge in knowing that my inner work, my happiness, my deeper relationships are real and cannot be taken away from me. I say “I love you” much, much more often now than before I got sick. Believe it or not, I trust life more now and my ability to deal with whatever comes my way. I have a much stronger sense of purpose in life.

I still work for the same organization. About six-months after my return I applied for a more responsible position there and it feels good to use more of my strengths. There’s less room for holding back in life now! I’m also really excited about my study of traditional dances from Eastern Europe and am developing my sideshow as a dance teacher.

My partner Elizabeth and I feel like we came out of cancer stronger together. Compared with (or perhaps because of) some of the healing work I’ve done around trauma, cancer was in some ways easier for us. We are in the process of starting a family through adoption.

Thoughts and Hints for Patients: Assemble a healing team for yourself. This not only includes excellent doctors but also people who can help you in the other aspects of your healing that are important to you: pastors, listening friends, therapists, etc.

People are often eager to support you. Asking for help is a gift to them.

Trust your inner wisdom. You know the most about yourself and what you need. You are in charge of your own journey.

While with cancer there is danger, there is also opportunity.

Diagnosis: I first saw a doctor for pain in my neck. An MRI revealed a tumor. I only waited two weeks for treatment. It was a time of very high anxiety. I did a lot of reading about having cancer and dealing with a new diagnosis of cancer. I also spoke with cancer survivors to learn from them.

Treatment: My surgeon was not able to remove the tumor in one piece with margins so I went for proton radiation. My tumor came back after 5 years. At that time I sought treatment from someone who had experience with chondrosarcoma. I did not know the diagnosis at the time of my first surgery. I had more surgery (2 years ago). That surgery has left me with some ongoing problems but so far the tumor has not come back.

Recovery: I had my spine fused five levels in the neck. My neck has very limited motion and I have chronic neck pain and nerve damage. However, my life is very active and I feel I am able to cope well with these issues.

Life Now: I work part time and care for my family (I have help with housework but do the laundry and cooking). I walk 2-3 miles at least three times per week. I stay connected to friends. I used to ski and skate. Now I read and knit. My life has changed but I am grateful to still have a life. This has helped me to accept the changes. I am still able to drive. I count my blessings every day.

Thoughts and Hints for Patients: Stay positive. Remember to be grateful for the good things in your life. It is so easy to be sad and depressed but it doesn’t help you in any way. You will need people to help you get through this. Staying positive and grateful will make it easier for others to be around you. Learn everything you can about the disease. Realize that everyone has a different experience and a different course. Try not to compare. Try to accept your situation, make the best of it and get the best medical care you can find.