Ewing’s sarcoma next to the spine
Age at Diagnosis: 29
Date of Diagnosis: 2006
Hospital: Mayo Clinic
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.