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CancerLynx - we prowl the net
September 17, 2000

First Aid Yourself - Essential Websites
Betsy Dance

First Aid Yourself-Essential Websites for Breast Cancer is a labor of love. It is a tribute to Ellen Lea Hickey Grayson and to her journey, and it is a gift-from Ellen and from me-to Ellen's daughter, Stafford. Its origins, however, were much more practical.

Ellen was diagnosed with inflammatory breast cancer in January, 1999. She asked me to do internet research, which I gladly did for my own peace of mind and for her. When my mother had lung cancer almost ten years ago, the internet was not a viable research tool-at least not for me. Instead, I trudged to many-a-library with high hopes and always left with little in hand. Living in Washington, D.C., I even had the Library of Congress and the National Institutes of Health library available to me. They were all too much. In my grief stricken scattered frame of mind, I couldn't manage to translate card catalogues into help for my mother.

Being able to study Ellen's situation, while upsetting, equipped me to walk with her. By the end of February, my involvement in her life had gone beyond merely researching. I was completely enmeshed with Ellen and with her cancer.

One day that month, out of the blue, my old friend Robin Lind called me. I had been lucky enough to work for Robin as a reporter in the late eighties when he edited a newspaper in Virginia called The Goochland Free Press. Back then, Robin took me on, tucked me under his wing, and gave me invaluable lessons about writing and reporting. At that time, he gave me a job that turned out to be a major hinge upon which the rest of my life swung. His call to me when Ellen was sick served the same purpose.

"What is your passion?" Robin asked. He and his wife, Kitty Williams, had started a series of books about internet sites. They had two books already published, Essential Business Websites and Essential Net Novice Websites, and were each working on more books and thought I might like to help. Although I needed a job and was completely honored, I couldn't imagine they would want a book about the subject that really was my true passion: cancer. But they did. I started writing.

Plunging in helped me help Ellen better. People told me about Websites I wouldn't have otherwise found and my own research turned up a lot of news for us both. In the book, I say, "Researching this book has been like writing letters to Ellen. It has kept her foremost in my mind. Reading, thinking, and writing about cancer has given me a way-even a small way-to help. Providing these services is how I have expressed my grief and offered my prayers to her."

That is true. I can't say it again in a better way. In the beginning, however, I was not writing the finished product.

In the beginning, I wrote cold little chapters describing Websites dealing with cancer. I wasn't writing about Ellen and didn't have any hook at all-even I wasn't interested in what I was putting on paper. During all of this, I moved from Washington, D.C. to Montana, via all the states in-between.

By the time I settled in Montana, I had something of a body of work to look at and it was unremarkable. I needed to personalize the information in some way. Cancer is a depressing subject and the way the book was coming along, I couldn't figure out why anyone would read it.

Ellen, however, was a different matter. She wasn't depressing in the least. She was full of life, determined, scared, focused and raising her first child. So I started writing about the reason I was writing at all: Ellen, not cancer. Ellen approved. Finding the book's heart and soul was a huge relief. It not only gave me a way to personalize the book, it gave me a way to stay close to her as I wrote, way out there in Montana.

We started working on the text together. I'd send her what I'd written; she'd make changes; I'd rework what we had and would send it to Robin and Kitty. Even though the book is about useful Websites and about Ellen's experiences with cancer, it would not be what it is without Robin and Kitty's editing. Honestly.

Ellen grew more and more involved with the project as it progressed. What was unspoken between us, but also understood, was that the book would be serve as one explanation for Stafford should anything happen to Ellen.

Earlyish in Ellen's run with inflammatory breast cancer, she told me she worried that she was keeping me in Washington. She knew I'd planned to leave so I could try my hand at fiction, which I'd just finished practicing in graduate school. To a large degree she was keeping me in Washington, but in fact that's not quite right. Other things were actually keeping me in Washington-my house wouldn't rent; I was in physical therapy for a bad knee injury. . .-, those things kept me there. I wanted to stay with Ellen. And I needed to. She was my dear friend and she was sick with what some considered a terminal illness. I could not leave that. And, clear as a bell, I knew I had something to learn from her. So did she.

She let me witness (her word) what was happening to her on the deepest levels. She taught me. She gave to me. And she also turned me into a bank of information about all the things and events and concerns and sorrows and joys that happened to her-that I will one day share with Stafford.

Although we never said it, Ellen and I both knew that if something happened to Ellen, I could tell Stafford everything her mother had told me. We both also knew, full well, that she would live to do the telling of it herself. This proximity gave me a way to write the book-serendipity at its greatest.

As I worked on the book, I realized there were two points of my own that I wanted to make clear. First, complementary treatments have some things to offer. Second, a person not diagnosed with an illness ought not be scared of a person diagnosed with an illness. You, the "healthy" one, will not catch their illness if you hug them or if you love in whatever way you can. You will help in small ways while you, the "healthy" one, will be helped in unimaginable ways.

The book for and about Ellen is a labor of love. It is a tribute. It is a memory. It is a blueprint. It was written as a service and to be of service. Help-information-is in short supply when cancer is diagnosed. Someone will pick this book up and will read it and will use it and will find something that makes her journey or her friend's journey a very little bit softer.

And when that happens, what Ellen and I did together, with the help of Robin and Kitty's editing, will have purpose as well as meaning.

Ellen died on May 26, 2000

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