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CancerLynx - we prowl the net
August 14, 2000

Why First Aid Yourself
Robin Lind

What do you do when someone you love is diagnosed with cancer? What can you do? Where do you turn?

This year more than 175,000 Americans will face breast cancer diagnosis and treatment. Tens of millions will be left wondering how they can help their loved ones through this terrifying time.

Our awareness of this basic need led us to publish our newest title in a series of books about information available on the Internet, "First Aid Yourself, Essential Breast Cancer Websites" - a book written for people who want to help.

Some books are born out of committee, the creatures of marketing research and demonstrable sales potential. They are launched amid fanfare and rise up on a foaming sea of promotion and advertising. The publishing establishment blesses these new tomes with reviews, endorsements and complimentary dust jacket blurbs. They spring full-grown onto the best-seller lists and it is said they have "have legs" on which they walk into the consumer consciousness and profitable backlists.

Not so with First Aid Yourself, an entirely unanticipated book which has struggled into being under our disbelieving eyes. So much about its creation, growth and development has been beyond our original expectations that we have learned to watch with wonderment at where it will take us next.

First, I should explain that this is not just a collection of Websites, although when it appeared in June as an eBook it was said to be the most comprehensive collection of Websites about breast cancer that had yet been assembled. And because it is published in electronic form we have been able to add additional resources to our Appendix in subsequent months as they have become available.

More importantly however, this is a powerful narrative by the extraordinarily gifted writer, Betsy Dance, a narrative that is by turns, moving, gripping, touching, inspiring and sometimes laughing-out-loud funny.

It is her story of how she helped her lifelong friend Ellen Grayson after she received the dreaded news "You have breast cancer;" how Betsy responded by going onto the Web time after time, seeking out information, as disease and treatment progressed. It is a story of our times - fighting disease, fighting ignorance, fighting the effects of treatment, going into the steep learning curve that is required of all cancer patients, separating out the useful from useless in the wildly expanding world of information that has mushroomed online.

When I say First Aid Yourself was unanticipated I mean literally that. The morning that Ellen called Betsy in late January 1999 to tell her of her diagnosis, we had no plans to publish a book about breast cancer. We had never met Ellen Grayson. We had been out of touch with Betsy for several years.

Yet, within two weeks the idea had come to us to locate Betsy Dance and ask her if would be willing to write one of the books in our Essential Website series; she had suggested breast cancer as the topic; we had agreed; a book was conceived. None of us knew where it would go.

For several months the book didn't even have a name. Then suddenly "First Aid Yourself" materialized. There was no agreement but the name stuck, for want of anything better. Its acronym - FAY - became the working title before we realized it was the old French and late Latin for a fate, a goddess of destiny.

The book grew, demanding constant attention like an insistent child, but growing and shifting and precociously taking on its own life.

The cover designed itself: the necessity of having some illustration -- any illustration -- led to the temporary placement of the illustration from the breast cancer research stamp. That in turn led to research about the stamp, and contact with designer Whitney Sherman. She, in turn, directed us to Dr. Ernie Bodai who had developed the concept of the semi-postal stamp (which has raised more than $14 million for breast cancer research) and he was the one who encouraged us to seek permission from the Post Office to use the design.

It was a frustrating period of dealing with federal bureaucracy but a time of discernment as we came into contact with more and more people who had been changed by the whole concept behind the voluntary contribution of 7 to breast cancer research for every 40 stamp sold.

So was born First Aid Yourself's unique premium pricing program - what we have dubbed, in honor of Ernie Bodai, Bodacious Premium Pricing" -- that generates a $3 contribution to breast cancer prevention research for anyone who will pay $1 extra for the book.

By the time we had fully developed the premium pricing plan, and arranged with the Cancer Research Foundation of America to accept the donations, we had received permission to use the illustration. Incredibly, it had taken only two weeks. There was something about FAY that set it apart from other books we'd ever worked on.

Because the book was to be published both electronically (as an eBook with active hyperlinks to all sites discussed) and as a printed book, we needed to find someone who could handle the eBook encoding and distribution. Not only that, we needed someone who was willing to market it not with a discount price but with a premium price in addition to the regular price.

Computer programs aren't set up for premium pricing. No one wanted the hassle. It couldn't be done. Then we appealed to, the company that had handled Stephen King's wildly popular "Riding the Bullet" eBook.

They said No, then Well, then Okay, Yes. It took only a few days.

What was it about FAY?

At the eBook's debut at Book Expo America in Chicago on June 2, it was one of Softlock's chief titles. It was the lead title at online bookseller In the first month, not a single copy was sold at the regular price: every order came in at the premium level.

Call it a resonance, a convergence, something in the harmonics of this book we called FAY. Something was at work beyond our control.

Two weeks after its debut with, First Aid Yourself was considered by, the web's largest eBook distributor. The entire management team was enthusiastic about it but their computers couldn't handle the premium pricing. It was just too complicated.

Then CEO Chris MacAskill heard about it and said some way out to be found to carry it. His solution? Contribute 100% of MightyWords' commission to breast cancer research.

In a single stroke he had taken a computer problem and converted it to "Mighty" Bodacious Premium Pricing: for every copy sold at a $1 premium over the regular price, MightyWords would contribute $10 to breast cancer prevention research.

A week later,, the largest distributor of eBook Reader software, protested that First Aid Yourself was "the only book on the planet with both a regular price and a premium price;" said it would undoubtedly create havoc with their bookkeeping, would cause untold consternation with their programmers, would be impossible to sell to consumers ? but then they took FAY into their bookstore and featured it as a lead title. Yes, it offered Bodacious Premium Pricing.

Two weeks after that, following some serious soul-searching, Glassbook increased their participation and First Aid Yourself now has a second major eBook distributor contributing $10 to cancer research whenever a consumer volunteers to pay that one extra dollar. Bodacious? You bet!

Throughout the composition process (when a book is designed and pages are put together) four pages had remained blank in the space reserved for Additional Resources at the back of the book. Time and again we had moved to delete them and then held back, looking for the best possible Web-based instruction on breast self examination. Nothing seemed satisfactory.

In late July, checking the Web one more time for new links we suddenly discovered Dr. Deborah Axelrod's and its superb section on breast self examination. This was what we had been looking for but could we use it?

Dr. Axelrod, we discovered, was chief of the Breast Center at St. Vincent's Comprehensive Cancer Center in New York City; she was also co-author with Tracy Chutorian Semler and Rosie O'Donnell of the Book "Bosom Buddies, Lessons and Laughter on Breast Health and Cancer."

It seemed a daunting task. It was a matter of finding out who, what and where, using email and telephone to establish contact and ask permission.

It was on the last day of July, a deadline looming, that we called Dr. Axelrod's office one final time. To our amazement, she took the call. No, she had never given permission before. Yes, she had been asked by many others. No, she didn't think it would be possible ? And yet there was hesitation in her voice. She wanted to know more about this book. What was it all about? What was Bodacious Premium Pricing? How did it generate funds for breast cancer research?

She would have to think about it.

Two hours later she called back. There was something about this book. ? We would grant us permission to include her breast self examination, yes.


As one of First Aid Yourself's early advisors says, whenever these things happen, "This book doesn't have legs - it has wings!"

First Aid Yourself, Essential Breast Cancer Websites, by Betsy Dance, ISBN 09639531-8-4, 2000 Hope Springs Press;

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