What was your experience with treatment and follow up?

I was too little to remember much about treatment. Mom said I was so mad at being put in the hospital that I was starving myself, so they sent me home early. All I remember of follow up is the hospital routine of putting on the gown that never fit, sitting in various colored chairs, getting X-rayed in that cold room, getting my finger stuck for blood, sitting on a table in an auditorium in front of lots of people in white coats, and talking with Dr. Fetterman, the pediatric pathologist and his secretary, Mrs. Cooksey. (I saw them so often they became good friends and even came to my wedding!) I only remember the nice parts. My body remembers other things because I recoil at small spaces and being held down or feeling trapped.

How soon did you experience late effects?

Other than backache, most symptoms came on quite rapidly in early 1990's (almost 40 years post-treatment) after my fifth pregnancy. Some are constant, some occasional or sporadic.

What kind of late effects have you experienced?

My right side is affected by radiation degeneration pulling my ribs, shoulder blades, vertebrae and hips out of place. It's played havoc with my structural balance. This has caused scoliosis, kyphosis and lordosis; shrunken ribs; spasms in various muscles. The whole area looks caved-in. I also suffer from sporadic digestive disturbances; and various odd physical experiences not explained other ways. I have a scar at my waist, running from naval to spine, with radiation rash which has gotten dry and itchy over the years (eased with use of beta carotene).

How have you coped with the late effects?

Over the years I have developed a health-care strategy consisting of a well-rounded combination of faith, whole-food vitamin supplements, gentle exercises in a warm pool 2-3 times a week, and specialized health practitioners. A chiropractor, manual-only physical therapist, and massage therapist have been particularly helpful with my spinal problems. They keep me functioning on a normal basis and my body in some sort of balance. I have also seen a spinal specialist, who at first only offered surgery or drugs, and hasn't offered much help.

What keeps you going?

My strong faith in God and my love for my extended family and friends. The victories I have experienced in my life prove that the impossible is possible. I am firmly convinced that my life was spared for a reason and that I have lived these almost-50 years post-treatment in order to affect the lives of others.

Have your friends and family been understanding and supportive, or bewildered?

All of these! I have been loved and supported by my parents and siblings, by my husband's extensive family, and many friends. Many offer prayer and encouragement while yet not clearly knowing or fully understanding what has happened to me. At the same time, there are aspects of my late effects which I do not readily share because the dread and well-meaning pressure that arise can change relationships. I want to be cared for gently due to my physical needs, and yet I want to be known for other facets of my life besides those related to my cancer and late effects.

What sparked you to get involved with the Cancer Survivors Project?

I consider myself an advocate for getting the mainstream medical community to "think outside the box" in caring for their patients and give more than thoughtless cookie-cutter care. I believe that complementary and alternative medicine may be effective in situations that are not diseases and would benefit from treatments other than drugs and surgeries. I wanted the Cancer Survivors Project to include my voice.

What thoughts would you like to share with people who are just discovering this website?

There is hope! Here you will find those who will listen with understanding and compassion, and show you that there are many ways of dealing with your pain and suffering.