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Survival lessons

Posted Jan 25 2013 11:58am
January 25, 2013 - Posted by tamilb

Getting ready to start my second book and a change of perspective!

I’ve been finishing up my proposal for my new and improved version of From Incurable to Incredible. As I announced before, I found a wonderful book agent, who suggested I update and add some features to my book, such as a section called “Survival Lessons” from each person’s story. I’m also adding nine new stories, which I’m really excited about. As soon as my proposal is finished, she’s going to sell it to prospective publishers. It’s a chance to take the book to a larger audience, and I couldn’t be happier.

As I updated my own story, I realized my focus and purpose have shifted since I started writing the book about four years ago. I was newly diagnosed with stage IV breast cancer, and I only wanted to share stories of people who had “no evidence of disease (NED).” After living with metastatic cancer for five years now, I have a different view. I have only experienced NED once since then and that was less than a year. Many of my friends and contacts, like me, have been living with active disease for years. They are incredible to me, and they will be represented in my book.

I feel like I’m perhaps starting to mellow as I go through this experience or perhaps the words, “worn down,” better describes it. I have complained here in the past that there seems to be a divide, at least in the breast cancer community, between people like me who suggest that positive attitude, lifestyle changes, and faith have a positive impact on survival. I would get extremely angry at survivors who suggested this wasn’t the case and seem to focus on death and dying. I still hold strong to my beliefs, but I’m beginning to understand their position and realizing we’re all in this together.

I had a really nice talk the other day with the past president of Metavivor , an organization that supports, advocates and raises research dollars for metastatic breast cancer survivors, or as they call them, “metavivors.” In the past, I decided not to support their organization because of what I perceived as their negative tone, focusing on death and dying. Over the years, I have seen what they are doing to put metastatic breast cancer and its lack of research funding at the forefront, so I decided to designated the $1,000 I received for being a Pink Power Mom nominee to Metavivor’s research fund.

During our chat, she was very willing to listen to my feedback that they put more hopeful messages out there for those of us living with the disease. She acknowledged that their messages were geared to the “outside world” to gain funding and awareness; and needed to temper that with some hopeful messages.  I offered to share some stories and quotes for her for their site. And I was able to understand her question, which irked me during our conversation long ago. Could some people who are dying or have had loved ones die of cancer feel as if they didn’t do enough or somehow failed?

That has never been my intention, and I felt really awful if I gave anyone that impression. So I came up with this “disclaimer” I’m adding to my story:

“As we know, there are no guarantees in life. With this book and these lessons, I am no way implying that if someone emulates the people featured, they will absolutely live longer and perhaps beat cancer. And I’m certainly not saying that people who are dying or lose their life to this disease did not do something ‘right.’ My goal is to provide hope that overcoming the odds is a possibility. Most people like me were never given that hope. And I believe this spark of possibility can be life-changing.”

What do you think?

 

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