Survival lessons
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 and those who don’t. I would get extremely angry at survivors who disagreed 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 designate 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?
Lisa Quintana says:
I think that perhaps part of it Tami might be that there has been a shift in the medical field and attitude toward Stage IV as well…and I sometimes think it is a little odd.
The concept now is that being on chemo for the rest of your life might not be a bad thing–and that “no progression” not NED is OK.
I’m not worn down….but I sometimes think I have to re-wrap my head around things. As someone who was NED for a very long time, I am realistic in thinking that since I now have it in multiple locations that having a second long period of NED is unrealistic…BUT (!) I am able for the most part to do the things I love and enjoy.
Does this mean I don’t hope and pray for some drug or method to work on us that won’t be at such a high cost both monetarily and physically? No. I sure as heck hope that part hurries along….but I do look at it a little differently. Worn down? I don’t think so. At peace with what our reality is at the moment might be another way of looking at it.
Debby says:
Great disclaimer. Just the right tone. I have always been uncomfortable with the idea that being positive affects outcomes. Too many wonderful positive people have succumbed – Nevine? Anyway, I do think a positive attitude DOES influence how we handle the disease. And to me that’s the important part. Tomorrow is promised to no one – disease or not. It’s how we choose to live, whatever time we have, that’s important. Also, until we find that elusive cure let’s make mets a chronic disease.
Sam Elliston says:
I admire your journey and your honesty in describing it for us. I think the disclaimer is a nice way to say it
thanks
Sam
Heidi Bright Parales MDiv says:
Tami, I think your disclaimer is perfect. I have struggled with those concepts–if I “do all the right things” I “shud” be able to survive, yet that might not be the case. It leads to blame and shame if we don’t survive, or potentially to pride and self-aggrandizement if we do.
On the other hand is the idea that when our numbers are up, they’re up, and it’s up to us to manage how we get there–making life more enjoyable and healthy, or letting ourselves go and not trying anymore.
Which is right? Ah, that’s the mystery of life. So I think your disclaimer is right-on. I think your book offers a way to work with hope, which is what people need, no matter the outcome.
Best wishes on finding a traditional publisher! You have shown your book is worth getting traditionally published and you have worked so hard for this. I pray for you daily.
Terri da Silva says:
Love the disclaimer. I think it’s perfectly worded. It’s really hard to find the balance between hope and reality. I still hope I will remain cancer free for the rest of my life (and I refuse to give up that dream)… But I know the reality is that most of us will not.
And I agree that it is important to speak more about those who are doing well and living for a long time with active disease. When I was first diagnosed that’s all I hoped for – just to live a long life. I imagined i would always be dancing with disease but if I could just manage the symptoms well enough to stick around for a while and enjoy the time I do have here then I would be ok with that.
So happy to hear about the agent. Keeping my fingers crossed for a great book deal! And looking forward to reading the new book. Hugs, – Terri
tamilb says:
Thanks everyone for your comments! I really appreciate your feedback as you know too well about what it’s like to live with chronic disease. I’ve been away from my desktop and for some reason my email alerts aren’t coming up on my mobile. So sorry your comments haven’t been approved until now. I have it set up that I have to approve comments before they are posted.