Redefining Pink

haze verb (used with object), hazed, haz·ing.

1.

to subject (freshmen, newcomers, etc.) to abusive or humiliating tricks and ridicule.

October has started to feel like a new form of hazing. Since the end of September everything you see  -- from buses to billboards to Monday Night football to the grocery store -- shimmers in pink. You can "support breast cancer research" (so it is said) by purchasing everything imaginable and then a multitude of unimaginable things as well.  Every year it gets worse.

There are 37,000,000 listings for breast cancer
 awareness products. Don't buy it.

Just Google Breast Cancer 'Awareness Products. You could spend the rest of your life reading the lisings, about 37,000,000 results to be exact.

The year I was diagnosed I spent the first day of October beginning my second course of chemotherapy. I was celebrating. Why? Because Taxotere was so much easier than FAC. Instead of a three-day infusion on a pump it was only an hour-long drip. That felt like vacation. I was celebrating because after six months I was half way through chemo, celebrating because after four surgeries and a life-threatening infection, I finally had enough energy to drive myself to MD Anderson.  I no longer looked like a walking skeleton.  I was celebrating because my hair had grown out and it looked cool, even though it was about to fall out again.

Aunt Jody and Tyler McCready, who turned 18 October 5.

My celebration was not about pink. My celebration was about getting through cancer treatment one day at a time.  I was celebrating because that's the way I roll.

But that does not mean I am dishonest about cancer in general and breast cancer in particular.  That doesn't mean I'm not deeply critical of consumerism masquerading as research, of flawed studies, of misinformation about breast cancer when and where and I find it.

Plus as a patient among many the pink hoopla was embarrassing. There were thousands with cancer at MD Anderson who were NOT having parades in their honor.  Those with blood and lymph cancers, colon, ovarian, uterine or lung carcinomas. Myelomas, sarcomas, glioblastomas. Women with those cancers had treatments as grueling and some with significantly more mortality. But they did not have a pink machine.

Are you buying something you don't need?

We need to ditch the machine, redefine and be realistic about pink. A few thoughts:

• Relating to the Ribbon.  Each woman's perception of the pink ribbon is part of her story. There are 2.3 million breast cancer survivors and 2.3 million stories. Listen to them.

• Awareness vs. Education: Have you been living in a yurt? People are aware of and affected by breast cancer, from cab drivers to elementary school children. What they understand about the disease itself may be something else entirely. That's our job as breast cancer advocates, to know the facts and pass them on. In the week following my diagnosis I thought I was getting a handle on what I needed to do and why. Then my oncologist presented a full-page treatment outline that ended with "five years of tamoxifen." Oh. For the archives the National Breast Cancer Coalition has an excellent series on the fact and myths of breast cancer. 

• It's not just about white, educated professional women.  Sistas, both African American and Hispanic women get everything you do, plus. Both are characterized by late diagnosis.  African Americana women often have more aggressive disease and cancer itself has now overtaken heart disease as the leading cause of death in the Hispanic population. If you do anything this month find out what is happening in underserved communities where basic outreach still is essential.  This point is missing in pink discussions. There are cases where lives actually DO depend on getting women in for mammograms. That doesn't mean we stop working for better detection.  Breast cancer advocacy must move forward in a coordinated way: targeted outreach, targeted research, targeted education built on a foundation of mutual support and respect.

• Early detection isn't everything.  Biology is.  Some 30 percent of all breast cancer cases will metastasize.  Initial staging is one factor of many impacting breast cancer survivorship.  Genomic science must continue to burrow into cancer biology -- triple negative and inflammatory breast cancer, reasons why some cancers are aggressive and others aren't.  As a survivor this means I have a plan that I review yearly in MD Anderson's Survivorship Clinic and with my internist.  My health and life depend on this.  Intellectually I grasp that cancer can outwit our best efforts and adherence to recommended guidelienes. Instead of living like there's no tomorrow I live as if today is the best thing that's ever happened.  Because it is.

• Stop racing for a cure.  Let's start thinking about them, instead.  There isn't a cure.  Eventually there will be genomic analysis of your particular tumor and an individualized plan developed to eradicate it.  While the oncologist's toolkit is expanding today's kit will look rudimentary within another generation. The biology of breast cancer, and the mutations giving rise to cancer, is in some ways in its infancy. Every layer of science explained reveals yet another layer of complexity underneath. So we can not, must not, fritter away research dollars.  Make your voice heard in your congressional representative's office and make it known repeatedly that you support the current level of funding at the National Cancer Institute.  Keep in mind that one in two men, and one in three women will be diagnosed with cancer over the course of their lifetime.  

• The power of mutual respect.  My cup of tea might be your cup of coffee.  You might support an organization I do not, but that doesn't mean we don't share a mutual goal and support each other's experience. Because I am with you on your journey, in supporting your hopes and understanding your fears. My feelings about pink are just that: feelings. Opinions.  Many writers take on pink - look at the writers of the Breast Cancer Consortium and the work of my #BCSM co-moderator Alicia Staley.  Join us on one of our Monday chats for the input of Deanna J. Attai, MD, FACS and the other medical oncologists, radiologiss and surgeons who routinely join our chat.  

• Pretty in Pink?  Not always.  Some 30 percent of all breast cancers will metastasize. On October 13, Metastatic Awareness Day, we will recognize women affected with Stage IV cancer. This is where attention is needed.  If you haven't, check out these organizations:  Metavivor,  Metastatic Breast Cancer Network, Triple Negative Breast Cancer Foundation and the Inflammatory Breast Cancer Foundation. Take a look at how these groups are approaching metastatic disease. The days that these women feel isolated and cut off from the mainstream breast cancer culture - are over. We all know too many women with disease recurrence. We are not leaving them behind.

• Global Awareness.  We need to expand our global breast cancer conversation.  In 2010 more than 50% of the world's deaths from breast cancer occurred in developing, not high-income nations, according to Benjamin O. Anderson, MD, discussing The World Health Organization's Initiative for Noncommunicable Diseases last month at ASCO Breast in San Francisco.  For many countries pink isn't about mammography, which may not be practical, but what kind of intervention will make the greatest impact in decreasing mortality immediately. 

The first week of Breast Cancer Awareness has ended. Sometimes it reminds me of how Christmas has been commercialized - it starts early, is in your face, and makes myth of the experience itself.  It can trivialize a serious disease, divert discussion and dollars. I happen to think if we continue to act fearlessly - as friends, as survivors, advocates and activists -  in bringing our intellectural collective to bear on the issue we can change the landscape for your daughters.   Last week I was stunned to hear someone on our weekly #BCSM chat express the thought that we - co moderators Alicia Staley and Deanna Attai, MD and I -- had a political agenda.  If having an anti-cancer, evidence-based, pro-survivorship, community-based agenda is political then yes, I'll be the first to print campaign buttons and banners.  On my dollar.  Not from pimping cancer.

Here's looking at you, kids.

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This past week we were shocked and saddened to hear of the recurrence of Lisa Adam's cancer.  If you are not familiar with her or her story please read: "What to Do When You Are Diagnosed with Stage IV Cancer." Lisa, her husband Clark, their children and friends are in my thoughts and prayers.