Monday, February 23, 2015


I was sent a link which is on Komen's website. Seeking donations, the banner shouts:


Here's a quote from the profiled patient, who happens to have metastatic breast cancer:

"Hold steady. You will get your answers. You will get through this."

And here's the problem. The narrative is wrong. The messaging is skewed to make a point. Early detection is it. Five years is the magic hurdle. Mammograms save lives.

I do not wish to be divisive. I am not attempting to start a Komen bash or a war between supporters and dissenters. Apparently, that is already taking place on Lori's blog where she wrote a rebuttal of sorts. For Lori, it's offensive. Her fingers flew across the keyboard. I know when she received the email with the aforementioned link. I know when she put the post on her blog. I know the title of Lori's blog upset many.

Too bad. Lori has metastatic disease, too. She gets to make her own rules. Write her own narrative and is entitled to her own reaction which is something we've shared in many of our private conversations. She is the first to acknowledge: to each their own. And so she wrote:

Provocative? Absolutely and deliberately. It's compare and contrast. Words matter. Don't let breast cancer win is offensive. Even more offensive? "You will get through this." No.She.Didn't. But alas, she did say those words. And for the most part, that's a damn lie. A FEW will get through this, very few at that. The science is black and white on the survival issue.

I'm going to take this two steps further.

Step One: In December, a story appeared in Science Daily on the use of war metaphors. It was about a study done at the University of Michigan. Among the findings.... the use of words like battle and fight may have unintended negative effects when used to motivate cancer patients. Surprised to hear that those two words are in the list of Top Ten Verbs Used to Describe Cancer. I don't know if research is on that list of verbs but it damn well belongs in the Number One spot. Many of us dislike the war metaphors and now there may be some science to back the dislike. Score one for the grumblers.

Step Two: Someone who was known to many of my dearest friends in the metastatic breast cancer community died on February 8th. Laurie Becklund was also a renowned journalist, a Fulbright scholar. Her death was reported on February 9th but it was a posthumously posted Op Ed that is required reading for all. As I Lay Dying appeared in the LA Times on February 20th, just three days ago. Every sentence, every word resonates.

Her message is clear. The present narrative must change. The big guns, those who seem to control the narrative, have to cut the nonsense. Stop spending so much money on fighting and hope and awareness and early detection and start spending more on research. Life saving research is what we need most. This is not a new rant for me and it's not a new rant for those who read this blog. Read what Lori and Laurie have said far more eloquently and with far more intelligence than I can muster.

If this is what we are waiting for to change the narrative, well... I guess it's time.......

Thanks to my cousin, Midnite Mike for taking this photo as proof that hell has indeed, FROZEN over. It's Time.

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  1. AnneMarie
    I read Laurie's OpEd piece the other day. It was so well written and just resonated with me. Thankfully I don't have to deal with mets, but the fear of recurrence is always going to hang over my head, because I know there's nothing I can do to prevent it, even though i'm more than 20 years out. The more I read, the more I'm totally disillusioned with Komen. When are these people going to get it?

  2. Hell has indeed frozen over. It is way past time to put our money into research for better treatments for all breast cancer stages and if we can't get a cure yet, then some treatment that will keep those with stage 4 alive longer, with a high quality of life. Awareness is no longer the issue. Keeping women alive longer is the issue.


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