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  • 2011 October 26
    From the daily archives: Wednesday, October 26, 2011

    This last weekend was amazing, not just for what I learned but who I learned it with. There is really so much to be done to change public policy and perception about breast cancer!
    Like so many newly diagnosed, when I first learned I had breast cancer I thought that all I had to do was take a deep breath, face my fear and get on with it. I had been affected by awareness blitz of the last decade that has inadvertently convinced a generation of women that mammograms and education had gotten the upper hand over breast cancer. To be told at diagnosis that my disease was serious (and read between the lines that it could very well kill me) was not what I expected.
    This weekend I learned why breast cancer is such a ferocious, still underestimated foe. I learned how breast cancer outsmarts treatment, and what is being done to outsmart breast cancer. I am heartened by how much we have learned, and frustrated by how far we still have to go.
    The biggest takeaway of all is that the divisions that exist between breast cancer survivors and advocates really don’t need to be there and are counterproductive. Breast cancer is a sneaky beast. It puts out little migrating cells very early in the process, which means even early stages of disease are at risk for recurrence. In my mind, it doesn’t matter if we are NED, metastatic, or haven been treated for “just” DCIS. It’s all breast cancer, and regardless of the diagnosis we join the prevalence statistics. That’s right. In evaluating the prevalence of disease in the U.S., I count as someone with breast cancer, even though at the moment I am NED. “Cure” is actually a misnomer when it comes to us. No one knows if we’re really cured once we’ve been diagnosed.
    So what about Deadline 2020? What does “cure” mean?
    It means that:

    1. We stop being diagnosed, as in we prevent it from ever happening in the first place.
    2. Women whose cancer has metastasized have weapons in the arsenal that will not only prolong their lives, but eradicate their disease for good and go on to live normal lives.

    We are a long, long way from these. I believe that if we focus, we can apply this focus in the same way other major milestones have been achieved, we will achieve this one, but not without a lot of people working together.

    My buddy Donna (what a thrill it was to finally meet my cyberbuddy!) and I were noticing that it was an extraordinary sort of woman who attends these things, who wants to be an advocate. Are all people who get this stinky disease amazing people? Is the disease that smart?

    No. It is that some of us respond by wanting to do something about it. The rabble rousers, action takers, loudmouths, women who have had enough…it’s the “uppity” ones who come to join the fight for the deadline. We are the NED, the Metastatic, the DCIS, the supporters, the educators, the researchers, all represented in that micro community this weekend. We can do it if we work together.

    Contrary to what we may think divides us, we are all in the same boat. We have all been affected by breast cancer and we’ve all had enough.

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