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Hope & Progress at the 2nd Annual Komen Blogger Summit

Two weeks ago, I attended my second, all-expense paid trip to Washington, DC, to attend the Annual Susan G. Komen Blogger Summit. I've been mulling over what I want to say about the experience and settled on the following:

  • The pinkification of breast cancer is still a major issue for Komen;
  • Komen still has a long way to go when it comes to reaching out to the metastatic breast cancer community, but a dialogue is hopefully starting; and
  • I sincerely appreciate Komen's attempts to meet the challenge of disparity within the breast cancer community.

On the second day of the summit, I walked the three mile Komen Global Race for the Cure at the National Mall. Of course, pink was ablaze everywhere. Although the ribbon (and its many pink mutations) has never been my thing, it was amazing to see thousands coming together like sports fans decked out in the team color.

If identifying with a team helps another patient/survivor/caregiver feel supported and part of something bigger than herself, I'm all for it.

That being said, Komen's latest blunder, acceptance of $100,000 from a company which proceeded to paint their fracking drills pink in "support" of breast cancer, most definitely came up during the summit. Marketing officer Norm Bowling admitted that the partnership with Baker Hughes, Inc., was a mistake and assured us Komen now has guidelines in place to make sure that future partnerships mesh with Komen's mission.

As to the mission, it was presented in three parts:

  1. closing disparities in the health care system for underserved communities;
  2. funding and encouraging the work of young researchers; and
  3. advancing research in the area of metastatic breast cancer.

It's about time the disparity issue got the attention it deserves. A few years ago, I volunteered as a grant reviewer for a local Komen chapter. Before that, I had no idea Komen made grants to agencies working with underserved populations to provide basic needs, such as child care, transportation, wigs and prothesis, education sessions, free mammograms, and navigation services.

Teena Francois-Blue, of the Chicago Breast Cancer Task Force (a Komen grantee), spoke at the summit and shared a picture of a mammography center in Chicago with an open sewer in the middle of the floor! The sad truth is that these communities don't have the same access to quality healthcare that many of us take for granted. It's also true that minority women are less likely to be diagnosed early and more likely to die of breast cancer.

Many of us have said that Komen should spend less on "awareness" and more on research because we're aware enough. What I haven't been aware of until recently are the very real disparities of care between the haves and the have-nots in our communities. 

I was beyond thrilled to see metastatic breast cancer research equally included in Komen's mission statement. That development and the inclusion of two stage IV bloggers at the summit shows real progress. I learned a lot about their concerns (their voices were sorely missed last year) and I'm hopeful the dialogue they started will continue and expand.

For a thoughtful report on the summit from the perspective of one of these bloggers, be sure to read Tami  Boehmer's Putting on my advocate hat for the Komen VIP Blogger Summit. 

Continuing with the focus on metastatic breast cancer research, we also heard from Dr.Daniel G. Stover, a Komen grant recipient conducting research in the area of triple negative breast cancer. He was joined by Komen scholar Dr. Antonio Wolff of the Translational Breast Cancer Research Consortium, a collaborative group founded to conduct innovative and high-impact clinical trials for breast cancer. 

At dinner the night before the race, we met with founder Nancy Brinker and Dr. Judy Salerno, Komen's CEO and President, who both spoke about their commitment to the metastatic community. Singer Matt Goss made a special appearance at the race and performed his song "Strong," inspired by his mother's strength as she battled and eventually succumbed to breast cancer. One of my fellow bloggers made a video of his performance, which you can see here.

Last year, I returned from the first Blogger Summit hopeful that Komen's new management team, headed by Dr. Salerno, would turn it in a new direction. I'm glad to report that I am seeing progress. Komen is a big tent, with the resources and heft to represent many different interests. I'm hopeful that its mission statement will continue to take it in a direction that satisfies the needs of all those afflicted by breast cancer.

Survival > Existence,

Related Posts:

My Secret Weekend with Susan G. Komen

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It's My Cancer & I'll Cry If I Want To

"[W]e need never be ashamed of our tears ..." - Charles Dickens

One of the things I've come to accept about myself is that I cry easily.

What hasn’t come easily is crying in front of other people.

During the diagnostic and treatment phases of cancer, I usually clamped down my tears. As a mother, I felt I had to be strong for my children. As a wife, I saw my husband's pain and, feeling guilty for causing it, didn't want to cause more. As a daughter, sister and friend, I didn't want to worry anyone and tried to keep things positive.

Although I felt no such obligations to my doctors, I hid tears from them too. When my breast surgeon told me I needed a mastectomy, I didn’t let myself lose it until I made it out of her office and onto the elevator. When my plastic surgeon needed before photographs, requiring me to stand there practically naked . . .

Read more here.

Tears are a normal part of the cancer struggle. Is hiding them isolating you and making it harder to get the support you deserve?

Survival > Existence,

Image courtesy of CDSessums

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Monday Morning Motivation

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Letting Go Of Certainty

In these matters the only certainty is that nothing is certain. Pliny the Elder

The first casualty of cancer is certainty.

Of course, I’m only speaking for myself. And, as someone who had gone through five years of miscarriages and infertility before cancer, I should have already known that life doesn’t always go the way you expect.  

Still, I walked into the breast center 15 years later without a doubt I knew the drill: remove everything above the waist, put on a robe, let the technician flatten a breast between panes of glass, hold my breath, repeat, get dressed, leave and, a few days