Sunday, October 7, 2012

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.  
  • 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.

#   #   #

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. 


18 comments:

Katie Ford Hall said...

FABULOUS POST JODY! Why yes, as a matter of fact, I do live in a yurt. :) Ok, not really. But you look great with that short hair and your little Batman.

This should be plastered all over every internet page across the whole interwho. Comprehensive. Complete. Real.

Thank you,
Katie

a4bc said...

Wow Jody, this post is fantastic. You touched on every point in a clear and concise way explaining the issues involved with breast cancer and #redefiningpink. Thank you for this carefully constructed post expressing the truth about breast cancer especially during this month of October.-Susan Zager

The Accidental Amazon said...

This is it, my friend. All of it. The whole enchilada. And MY opinion is that you are dah bomb.

Beth L. Gainer said...

Jody,

This is a terrific post that says everything insightful about breast cancer issues and our culture. I totally agree. I can't believe someone on #BCSM said you guys had a political agenda. I miss #BCSM and plan to join up in early December when my quarter ends. I'm feeling horrible for Lisa Adams.

Annie said...

Thank you for so eloquently expressing my own feelings about Pinktober and breast cancer in general. Fabulous article!!!

AnneMarie Ciccarella said...

THIS ROCKS IN EVERY WAY POSSIBLE. YOU hit 'em all. And, you hit 'em HARD. Love it... Loveit..... LOVEIT...

(While I may have a big mouth in real life, I'm not a SHOUTING PERSON when I'm online... THIS REQUIRES SHOUTING because YES, it IS THAT GREAT!!!)

Hugs,
AnneMarie

ChemoBabe said...

Jody,

This is an excellent summary of why cause marketing has gone too far and why we need more true advocacy.

Thank you for the great, incisive summary.

Lani

blondeambition said...

You knocked this out of the park, Jody. We are nothing without collaboration and you've presented the issues in a most thoughtful and comprehensive way. So proud to be a part of #BCSM and the BC Consortium with you.

(For those who haven't yet visited, please take a look at Gayle Sulik's international partnership committed to energizing the scientific and public discourse about breast cancer: http://breastcancerconsortium.net/about/mission/)

lisa adams said...

Thank you for your love and for this information. It has been a hard month to be (re-) diagnosed in. I guess I will be poster child for Metastatic Awareness Day? :) Love to you each and every day and thank you for the work you do for so many.

Jody said...

Lisa,
Any time is horrible to go through what you're experience but this month, especially. It feels like insult on top of injury. We are behind you and your family, supporting you the best way we can. You are too kind to write.

Jen said...

My feelings exactly...http://dinoiafamily.typepad.com/the_dinoia_family/2012/10/i-walked-into-my-new-favorite-coffee-shop-today.html

Nancy's Point said...

"We need to ditch the machine, redefine and be realistic about pink." Fabulous post, Jody. You covered things superbly.

Jody said...

I agree, Nancy! Let's ditch the machine and get to work.

All of you are doing such fabulous advocacy. Each person who tells the story advances the cause.

Love to you all.
jms

itsthebunk said...

Jody! Thank you for articulating this so brilliantly and so thoroughly. This post is now my go-to resource when educating "civilians" about pink and the need to reclaim and redefine it.
Rock on!!
Love and hugs to you,
Liza

regrounding said...

Brilliant, my friend! This says it all...clearly, concisely, fairly and with a positive agenda. Now if we can harness all the pink energy in moving the work forward...

tahera said...

Glad to come across this post about cancer. Here I would also like to add about cancer centers in Georgia which could be of great help to treat cancer.

Lisa Flowers Ross said...

I just finished up my radiation treatments for breast cancer on Oct. 2 and then was bombarded with pink month.

It makes me angry because it seems so commercialized, also somewhat trivialized and out of control. Do football players really need to wear pink shoes and sweatbands?

You expressed all the great reasons for redefining pink.

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