If we haven't been there ourselves, most of us know someone who has - being dropped into the world of cancer as results from tests come back positive - "You have cancer." The word itself is frightening: Cancer.
Research has come far in treating most cancers, including breast cancer. But what hasn't changed is the fear and the uncertainty that you are left with once you hear those words. After absorbing the information, you have to start acting on what needs to be done. And while much of what needs to be done is told to you - in terms of treatment options and when you need to start - there is a lot that is unknown.
How much did you know about breast cancer before you were diagnosed?
My mother and sister both had breast cancer (though none of us had the genetic markers) so I knew a little bit--but no matter how many people you know who've experienced it, including close relatives like in my case, you don't ever *really* know something like this until you go through it yourself.
There are many books already published on the topic of breast cancer but you said that you couldn't find what you were looking for. What exactly were you looking for?
When I was diagnosed, almost my first response was to head to the bookstore, to find the perfect book to get me through. Although I found literally hundreds of books on cancer, including dozens on breast cancer, the book I wanted just wasn't there. I wasn't looking for a 400-page tome on all the intricacies and details and possibilities, though there are many excellent books on the market that provide an exhaustive (and exhausting!) look at the subject. I didn't really care about their focus on how cancer spreads (that's too scary) or all the different types of breast cancer (many women only have one type). I didn't even particularly care about all the chapters on breast cancer prevention and the importance of mammograms--I had been getting regular mammograms, but anyway, since I had already been diagnosed with breast cancer, it was too late for me to worry about mammograms.
Instead, I wanted a book that would somehow, despite the scary overtones of a cancer diagnosis, give me a feeling of control, and the ability to structure a high quality of life during my year of dealing with cancer. I wanted a book that was quick, with checklists so that I wouldn't lose track of things. I wanted an all-in-one book that I could bring with me to doctor's appointments, the grocery store, the physical therapist.
I wanted a book that didn't address just my physical condition, but also my mental and emotional condition. I wanted a book that assumed I was a cancer *survivor* not a cancer victim, and one that didn't include the doom-and-gloom scenarios of cancer recurrence, which I wanted to avoid considering. I wanted a book that spoke not just to me, but also to my family, and maybe even my friends and community, so they would know how to support me.
I even hoped for a book that would keep track of all my personal information--medical and insurance details, kids' scheduling, shopping lists--so that I could stay organized and feel empowered.
This is the book I needed. It includes checklists for what to do before, during, and after breast cancer surgery, chemotherapy, and radiation. It covers lumpectomy, mastectomy, reconstruction, chemo, radiation, infusion ports, lymphedema management, prostheses, tamoxifen, herceptin, lupron, and clinical trials, as well as practical things like checklists for managing schedules and doctor appointments and work and family life during treatment. It even includes checklists for organizing clothing and equipment purchases.
Why is this book important?
Breast cancer treatment is difficult enough. At least with this book women can keep the pieces together and stay organized. I've been giving the advance galleys to friends who've been diagnosed, and people are finding it as helpful as I'd hoped, which is very gratifying. (I also just got a pretty incredible review at Scientific American)
Fighting breast cancer, going through treatment, is pretty intense - how were you able to go through the treatment and write at the same time?
I didn't write the book while in treatment, but I did keep notes all through treatment on what I wished I'd known before. It was just so frustrating: There are some medical things that nobody bothered to mention to me -- like, you should get your teeth checked and a flu shot before you start chemo, because your immune system will be compromised. There are some practical things--like, you're discharged from the hospital with drainage tubes dangling from your chest, and if you haven't purchased or figured out a system for keeping them suspended under your shirt comfortably, you can't really go out. There are nutritional tips--like ways to keep from being nauseated during chemotherapy; that becomes *really* important the minute you start chemo.
Then there are things that might affect your risk of recurrence--like, if you time your surgery for the latter half of your menstrual cycle, studies show that you'll have a much better chance than if you have the surgery earlier--but none of the doctors tell you that. And there are all these great freebies, like free restaurant meals, free housecleaning services, free spa vacations and retreats--which are open to breast cancer patients and survivors for free--but how are you supposed to find out about them?!
What were the obstacles you encountered while writing this book?
The lefty alternative people didn't like that the book covers how to deal with treatment such as chemotherapy; they thought I should advise people to treat breast cancer alternatively, and while that may work for some people, I don't think it's responsible advice for everyone. The medical community had exactly the opposite reaction: They didn't really believe that there should be a chapter on nutrition, and how you can try to prevent recurrence nutritionally, even though that part of the book is based on over 500 medical studies.
A lot of the organizations and communities that should have been *delighted* with this book are in bed with the drug companies--which means they have an interest in maintaining the status quo. And a lot of the publications that I had assumed would be ecstatic to run an article on the book--like Family Circle, which had expressed great interest in doing a story on it--instead ended up doing puff pieces on 'pink nailpolishes and lip glosses' you can buy, as if that sort of piece is going to help anyone in the throes of breast cancer treatment. There are a lot of politics in breast cancer, which makes it very hard to successfully promote this book--and very hard to get to a cure for breast cancer, as well.
You are taking a non-traditional route in getting your book out to the public, including using Crowdfunding. Why did you decide to get your book out this way?
Crowdfunding, for those who've never heard the time, is a more egalitarian modern-day form of Renaissance patronage, or a way to fund the arts.
In 'real life' I run PublishingGame.com, where I consult with people who want to publish and promote books. I keep being offered consulting jobs to crowdfund other people's books, because crowdfunding is similar to other kinds of book publicity things that I do, and I wanted to try it out on one of my own books first. Crowdfunding has been wildly successful with things like independent films and technology, and much less successful with book projects. But I suspected that part of that disparity is that authors aren't necessarily as savvy at publicity as independent filmmakers. I wanted to give crowdfunding a try for a book project. So this was a way to both try out crowdfunding to see if it has potential for book publicity, which has become increasingly difficult in recent years, and simultaneously spread the word about this book. (You can see my crowdfunding campaign on the book's website at http://www.BreastCancerChecklist.com)
This looks like a book that is about taking control in a situation where you may feel like you have little control. Is that the purpose - to help women get a bit of that back?
Absolutely. There's so little you can control about the whole breast cancer experience. This is a way to at least take control of what you can control.
If you could get just one message across to women who are thinking of buying your book, what would that be? What would you like to say?
I hope nobody needs this book, ever. But I hope women will share it with everyone they know--because with one in eight women getting breast cancer these days (and the numbers inching up steadily) *someone* you know will need it this year. Please help them find it.
More info at http://www.BreastCancerChecklist.com