I’ve been public about my criticisms of the Susan G. Komen Foundation for a few years. That criticism has not been easy; after all, I’m criticizing a huge organization which claims to be committed to finding a “cure” for the disease I have. Even my choice of words there is related to my criticism of Komen; I think they need to focus less on a “cure” and more on acknowledging and helping women deal with cancer after their initial treatment and/or those women like me who have metastatic breast cancer. Survivors, and there are more and more of them, have long term physical needs, psychological concerns, and medical issues that are unique.
I started out like many breast cancer women do, looking to give something back when I finished my surgeries and chemotherapy. I was energized, and wanted to help. Of course, the Race for the Cure in Central Park is one way to do that.
In 2008 I joined a family friend and her fellow Yale students for the Susan G. Komen Race for the Cure.
I believed I was a part of something big, meaningful, important.
The following year I asked my parents if they would join me at the Race for the Cure to mark my 40th birthday. At my birthday party I eschewed personal gifts and asked instead that guests donate to our family team. We raised almost $15,000 that year between the party and other donations. My mother (a stage III cancer survivor) and I walked in our pink t-shirts with my father and my daughter Paige.
I wrote a piece in 2009 (titled “A Walk in the Park) about the experience. I’m including the text here because I think it shows my commitment to the cause, to that day… at least what I thought that day meant.
“More than just a walk in the Park.”
That’s the catchphrase that the t-shirts sponsored by Duane Reade had on them at the Susan G. Komen Race for the Cure yesterday. Clever. You spend a lot of time reading people’s backs while you walk the 5k.
Some people just have their registration numbers.
Some have bright pink signs that read “In Celebration of” or “In Memory of.”
Sometimes it’s one name.
Or a list.
I didn’t wear a pink sign.
My list was too long.
You guys know who you are.
It would have been a long list.
And then it would have said:
Sometimes there is a photograph or drawing on walkers’ pink placards.
Or a drawing of some hearts.
Sometimes the writing is neat, businesslike, easy to read. Sometimes it’s in a child’s handwriting.
Sometimes it’s hard to read, in magic marker or crayon.
Sometimes there are stickers.
Sometimes it’s a full name,
Sometimes it’s more familiar,
“Aunt Cathy” or “Grandma Rainey.”
It might be “Mom,”
There was a man walking in front of me for almost a mile whose bright pink sign said “In Celebration of ME.” Male breast cancer is not common, but it’s real, and it can be very aggressive. How hard it must be to be a man with breast cancer, I pondered. It’s almost always talked about as a woman’s disease.
There was a t-shirt that said “Pink is the new purple” on the back. We followed it for a few minutes, unable to figure out its meaning. We kept hypothesizing what it meant. Finally my mother ran ahead a few steps and asked the young woman in her 20s what it meant. My mom returned with the explanation:
Her sister had breast cancer.
Her sister’s favorite color was purple.
Her sister had died of breast cancer.
She was walking in her sister’s honor;
Therefore, pink was the new purple.
There was the man we caught up to and quickly passed who did the whole route limping heavily, walking with a cane. “Wow,” Paige said, “that must be really hard.”
“Yes,” I said, “That’s what this day is all about.
It’s not about going the farthest distance.
It’s not a marathon.
It’s not about pushing your body to do the most it can do.
They make this race a distance that lots of people can do.
Even cancer patients who are in the middle of their treatment.
They want to include everyone:
Moms with strollers,
people in chemo,
that man with his cane.
It’s about raising money,
not about making the walk too hard that people can’t do it.
It’s about bringing people together.”
There were families. They forced me to struggle to keep composure. Dads with children. Usually they had matching t-shirts with pictures of a woman on them. They all said a woman’s name and then “Mommy, we miss you.” These were families grieving women who were taken from them. Families who had lost their queen to breast cancer.
Twenty-five thousand people were there yesterday.
We were only four of them.
Everybody had a story.
My mother and I were only two of those breast cancer stories.
We were united yesterday with a purpose: To keep our daughters, nieces, and friends from having to go through what we did.
The distance wasn’t far to walk.
The distance we have to go to find a cure is.
I don’t personally know that I believe a cure is possible.
I don’t think in those terms.
I do believe that the advances we have made/are making in improving treatment are real. They help in terms of lower recurrence rates (fewer women get cancer again after having it once), higher survival outcomes (fewer women die from their cancer), and better quality of life. Even if we can’t find a cure, I believe that the more money we can get into the hands of scientists and foundations to help get women the care they need for their bodies and their minds can only be good.
I wore pink and walked side-by-side my mother yesterday.
I felt lucky to have her with me.
I felt lucky that she was alive to be next to me after being diagnosed with stage III breast cancer.
I couldn’t treasure her more than I already do.
But this disease is one thing I don’t want Paige to have in common with us.
It was a great day yesterday.
Paige and I woke up tired this morning, but happy.
Last night when we pulled into the garage I gently shook her awake.
I told her how proud I was of her.
I told her how happy Nana and I were that she had been with us.
How great it was that we had made a memory like that together.
How proud she should be that she and I had raised about $7000 for Komen for the Cure.
It really was more than just a walk in the Park.
So much more.
In fact, the last time I spoke to my mother-in-law before she was killed in a car crash was a phone call she made to tell us how proud she was of us for raising so much money for Komen.
But after that event my feelings started to change. My health was still affected daily by the aftermath of my cancer. I started to be bothered by staplers with pink ribbons on them and football players decked out in pink sweatbands. I started to dread October’s ubiquitous pink ribbons in the name of Breast Cancer Awareness Month. Facebook status updates with women writing in silly code about where they leave their handbag as a veiled hat tip to breast cancer “awareness” started to bother me more and more. Soon friends and I started a contest; we would snap photos of the craziest products we could find with a pink ribbon on it. When Komen partnered with Kentucky Fried Chicken and Mike’s Hard Lemonade, people started wondering about some of the choices Komen was making; after all, fatty processed foods and frequent alcohol use are risk factors for breast cancer. I wondered, too.
As I’m feeling worse about all of this “pinkwashing,” I learned that Komen was getting litigious against everyone from kids to business owners trying to raise money for cancer charities. Why? Because Komen said that only they could use the phrase For the Cure (a brief overview here). I love what Stephen Colbert said:
Anybody who knows me knows I am a huge supporter of the Susan G. Komen for the Cure foundation, which raises millions of dollars a year in the fight against breast cancer . . . So I’m giving a big Tip of my Hat to the Komen foundation for spending almost a million dollars a year in donor funds to sue these other groups. If they don’t own the phrase “for the Cure,” then people might donate money thinking it’s going to an organization dedicated to curing cancer, when instead it’s wasted on organizations dedicated to curing cancer.
By this point I was getting more and more annoyed with Komen’s corporate actions that simultaneously limited the language others used to raise money for cancer research while expanding its own pink grasp seemingly without standards. I stopped raising money for them. I felt the Komen organization was putting a happy face on breast cancer, and not paying attention to the often-unpleasant realities of life as a survivor (including recurrence). Survivorship isn’t always always smiles and pink ribbons. I wrote one of my most popular posts “These things are not tied with a pink ribbon” to capture some of those feelings:
I wish I had the energy of my youth.
I wish I had the body.
I wish I had the fearlessness, the spunk, the drive.
I wish I could have a conversation with that young girl,
bright-eyed and full of wonder.
I wish I could tell her what lay ahead.
I wish I could tell her to gather strength, and wisdom, and patience like a squirrel gathering acorns for the winter.
“Save those things up,” I’d say, “you are going to need them… every last bit.”
I wish I could share the perspective I’ve gained along with all of the love.
But I can’t go back to that time,
I can’t go back to that place.
I can’t rewrite what’s happened,
I can’t do it all again.
I guess I must have done something right along the way for when it came time to fight I did,
and I did it well.
But that struggle took its toll on me and I am quite sure I will never, ever be the same.
You tell yourself “they’re only breasts.”
You say, “I don’t need ovaries, I’m done having children.”
But that obscures the truth.
The truth is that it does matter,
they do matter.
They say my uterus is atrophied.
It almost sounds funny when you say it.
“Who cares? What does that matter?”
It does. It does. It does.
To get rid of all hormones gives me a better chance at avoiding a recurrence, but there is a price to be paid.
No estrogen matters more than I ever thought it could.
It feels worse than taking injections to suppress my ovaries, worse than taking Tamoxifen. Those were easy. I had no clue what was ahead.
I wear the skirt, I put the makeup on, I walk the walk.
But I do not feel like a woman anymore.
I’m proud of what this body has done for me:
3 beautiful children,
healing the broken bones, the infections, the autoimmune diseases.
There is no week without migraines,
no cold winter day without icy implants.
Beneath the pretty lies ugly,
the ugly truth of cancer
and what it has taken from me.
While some may be able to go on,
My body will not let me.
These things are not tied with a pink ribbon.
These things last longer than a month.
This is part of awareness.
This is part of what breast cancer can do.
This is what it has done to me.
So this week I am grateful that I can look at my decision as the right one. When I saw Nancy Brinker (sister of Susan G Komen and the founder and CEO of Komen for the Cure) on MSNBC and how she engaged in what Barbara Boxer correctly termed “revisionist history” I was stunned (click here to either watch the video or read the transcript). This isn’t a woman who speaks for me. This isn’t a woman I want in charge of donations I make. This isn’t even, in my mind, a woman who is in touch with reality.
I’m allowed to vote with my pocketbook. I have dollars I opt to give to charity and Nancy Brinker, they don’t come to your address anymore.