What kinds of late effects have you experienced?

The first inkling of what I now know was a "late effect" came when I was eleven. I was piled in the car with my family for a road trip and my back began to hurt more and more. I kept asking for the pillow. My sister and brother teased me about being an old lady. My dad, however, knew that there might be some damage to my back from the radiation. A few doctor's visits and X-rays later, I was diagnosed with kyphosis (an "exaggeration or angulation of the normal posterior curve of the spine") caused by radiation. It became quite severe with my pre-adolescent growth spurts. In the summer of 1982, I had six of my mid to lower vertebrae fused together and a Harrington rod inserted.

Later, at seventeen years old, I went home from school with a stomachache. Within 24 hours I was having surgery. In the space of two years, I had a total of five surgeries primarily to resolve bowel obstructions related to radiation damage and/or scar tissue from past surgeries. These two years were the scariest time I can remember as my body seemed unable to recover from one surgery to the next. Eventually I did heal and managed to finish my undergraduate degree, then go on to get a Master's degree.

Since that time I have had surgery to remove my gallbladder and my thyroid and one of four parathyroid glands. In fact, I have had a total of 11 surgeries from age 2 to 33. Chronic problems include Gastroesophogeal Reflux Disease (GERD) and fairly frequent back pain. I am able to manage both of these things pretty well, thankfully.

How is your current doctor?

I do have a good primary care physician who, though she knew little about late effects before I became her patient, is open to learning. When I brought her the book Childhood Cancer Survivors by Nancy Keene, she was happy to have a guide to use in my care and ordered all of the tests that were recommended for my situation. We are now working with the Children's Oncology Group guidelines to make sure I am having all appropriate tests given my past history.

Have your friends and family been supportive or bewildered?

Friends and family have been both supportive and bewildered in varying degrees. Even my parents, who have been unwavering in their support, have felt completely bewildered at times. In fact, I have been bewildered. For a short time at least, my family bought into the belief that surviving childhood cancer offered a long and healthy future. Little did we know to expect so many bumps in the road.

I came to the conclusion many years ago that little good comes of talking too much about my health issues to friends. The average young person has a hard time relating to major health issues. Of course, some things always come up (my spinal curvature is very noticeable), but I tend to stick to basic facts about the matter at hand. I am talking more now and working to help people in my life understand my health issues and how to support me. At this point in my life I have a wonderful husband, a group of understanding friends, and my family is always supportive.

What thoughts would you like to share with others about the Cancer Survivors Project?

Not all childhood cancer survivors or other long term survivors will have health problems related to their cancer, but as many as two-thirds will. With that in mind, I encourage people to find out as much as they can about their own health and to become their own best advocates. I also want to encourage long term survivors to join the LTS e-mail group, as there is strength in numbers. Together we can increase our own knowledge base as well as the knowledge of health care providers.

What keeps you going?

A long time ago, my Dad was driving me home from the hospital after one of my back surgeries. I was making jokes and in good spirits. He asked me how it was that I was in such a good mood after what I'd been through. I told him that it seemed to me there were two kinds of people in the world, people who were happy and people who were sad. I wanted to be one of the happy people.

As an adult, I know that the world isn't nearly so black and white. However, I also know that I don't want the fact that I had some pretty dark times and serious health problems to suck all the joy from my life. For obvious reasons, I know life is short. I am not interested in wasting any of it.

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

Though I have been having serious problems with 'late effects' since 1981, it took until 2002 when I joined the long-term survivors e-mail list to learn that I wasn't a very bad-luck, freak-of-nature case. When I first found the group it was mind-boggling to me that I could meet so many people with similar stories to my own. This community represents only a fraction of the long-term cancer survivors in the world. Many survivors have no idea of the proper care and treatment that they need throughout their lives -whether or not they are actively experiencing any late effects.

I feel a lot of frustration about the lack of knowledge on the part of medical professionals regarding the impact of cancer treatments and the grim state of affairs for many long-term survivors trying to get appropriate health care. I felt I had to do something to turn the energy I spend lamenting this situation to something positive.

UPDATE

In late 2004, I was diagnosed with “subacute mesenteric ischemia post radiation.” All three of my mesenteric arteries were severely blocked due to calcification, which according to all physicians involved was the result of my past radiation. I had bypass surgery in January 2005: “Aortic superior mesenteric artery bypass with extensive lysis of adhesions.” Because I was so ill going into the surgery, I had numerous complications following the surgery. At the time of writing this (Fall ’06), I am considerably stronger and healthier but the multiple illnesses have caused many chronic problems. Most notably I am been unable to ingest enough calories and nutrition and am on home TPN (intervenous feeding). While this is a relatively rare late effect of cancer treatment, I share this information to help add to the knowledge of other cancer survivors who may have a similar issue. I hope that this will increase the body of knowledge among other survivors and medical professionals about the particular damage that radiation does to the arteries and gastrointestinal tract.