Did you know that until First Lady Betty Ford insisted that it be called breast cancer and not woman's cancer when talking about her diagnosis in 1974 it was considered almost taboo to say breast cancer? It wasn't until the 1970's that hormone markers on breast cancer were identified. And that Susan G Koman for the Cure was founded in 1982 after Nancy's sister Susan G Koman lost her battle to cancer at age of 36. The details of Susan's death are cancer battle are detailed out in the book. They are heartbreaking and familiar. Knowing that she dies when you are reading the book and the first detail of her only having a mastectomy and no chemo or radiation and no follow up for a hacking cough makes you thankful to have the screening and treatment that exist now.
I knew my chemo was relatively new (Taxotere) but didn't realize that FDA approval only came in 1996. That seems to so soon. Until I see that Avastin, the treatment for metastatic breast cancer and being trialed in Stage III patients, only got FDA approval in 2008. However, while reading the book Nancy Brinker does a good job of describing the importance of fundraising and funding trials. It's only been since 2000 that health insurance covers clinical trials. I can't imagine what it would cost to be in the PRESENT trial. The shots, plus the follow up appointments, blood work, urinalysis, MUGA scans, CT scans and bone scans. Organizations like SGK and American Cancer society help make these research opportunities happen and continue to identify and fund up and coming research. This book along with The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee make you so grateful for all the work and all the many woman who came before me and my cancer diagnosis. It is the main driver why I felt so compelled to enroll in the PRESENT trial.
Also part of Promise Me were other survivor stories intertwined, including Nancy Brinker's. I found many experiences that have mirrored my own breast cancer journey and many experiences that inspired me and make you grateful to be alive. I enjoyed how Brinker defended pink and defended it being everywhere. She looks at the extent of the pink and they way it is now universally acknowledged that pink and breast cancer go together as a win for awareness. Getting the full history of how little coverage and support breast cancer once had, how you couldn't even call it "breast", to now makes me grateful that the world has Nancy Brinker's to fight for breast cancer.
In Promise Me the idea of co-survivors. These are your support group who have been with you throughout your journey. You are the survivor at the center and co-survivors surrounding you. When I stop to think of the many, many co-surivors in my circle, it's pretty overwhelming. And a fantastic way to describe your support system.
My favorite quote from the book however is as follows:
It speaks to the tandem goals of survival and survivorship: You fight for your life. Then you live your life, regardless of what others think of your particular mode of self expression.
How unbelievable true that quote is. It is totally how I live my life now and I don't care if you think I own too much pink. I'm a survivor and it's my right. And it's fun.
Overall, I think the book is a great read in terms of the history of breast cancer, breast cancer treatment, cultural acceptance and fundraising. The details of Brinker's cancer treatment she doesn't like to detail but the history of her life and marriages are detailed out. As well as her rise to Ambassador under the Bush administration. These are parts that are sort of interesting, but I read through more quickly. I would have liked to hear more of her personal cancer experience, but understand that she doesn't detail it out because she feels it unfair to those who don't have access to the treatment she did. Fair enough.
Very grateful that I live now when having breast cancer in the title of my blog is no big deal.
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