Think of the worst thing that has ever happened to you in your life.  Then have the rest of the world give it a color…. say pink.   Watch people wear pink wigs, tutus, tiaras and boas as they celebrate beating it or “bring awareness” to it.    Watch as companies use this deadly disease to sell products like soup, carpet cleaning, candy & make-up.  Listen to people profess how if you are strong and determined you can “beat it.”

Keep seeing this joyful, pink celebration over and over and over.

And, over.

And know it is killing you.  Think about how it has killed hundreds of your friends.

Welcome to October for a metastatic breast cancer patient.

Now, let me clarify… I am grateful for the hard work and years of dedication to bring awareness to breast cancer.  I understand 30 years ago people faced this disease in isolation and disgrace.   The hard work to bring breast cancer into the mainstream has lead to open dialog around the disease, early detection, access to care and a beautiful community of support.  I proudly own a pair of pink boxing gloves signed by friends and family during my first diagnosis.

My family raised over $20,000 in my honor in the 2008 Komen 3 Day in Detroit, Michigan.

However, over the past 12 years of living with breast cancer my perception of the pink movement has evolved. I think it’s time the movement and your opinion does too.

Three things I’d like you to think about:

Celebrate survivors AND honor MBC survivors

At breast cancer celebrations around the country there is an acknowledgement of how long people have survived.  Often organized in groups of newly diagnosed, 1 year, 5 years, 10 years, etc… I recently attended an event where the longest survivor was 41 years past her original diagnosis.  The room erupted in cheer.   I filmed this video:

While I acknowledge this accomplishment and am happy for this lovely person’s good fortune.  This is all wrong.   She survived 40+ years because she was damn lucky.  The cancer never came back.   The people who need the support and encouragement most from the pink movement are those for which breast cancer spread to other parts of their body.  Those who are DYING of breast cancer.  No one dies from breast cancer in their breast.  It is when it spreads or becomes metastatic (stage iv) that it becomes a terminal diagnosis.

In the foreground of the video is a woman named Robin.  She has a mohawk.  Not because she is a badass (which she is). But, because she has had three rounds of full brain radiation to shrink the metastatic breast cancer tumors in her brain.   She is swollen and fatigued from steroids. Her hair doesn’t grow on the sides of her head.  In the video you see her respectfully applauding the 40+ year “winner.”

As I filmed this video tears streamed down my face.  We have created a movement where survivors are celebrated.  Living life the longest is the prize.  Pink rhinestones, sparkles and celebration. A Party in Pink. It all minimizes the brutal reality of a deadly disease.  No one sees Robin.

The way I see it, we should celebrate the number of years people have survived.  Absolutely.

But, then we should turn all the love & support of the pink movement to embrace those for whom the cancer returned… those who will never be done with treatment, facing never ending toxic treatments, living scan to scan, clinging to hope. Those who are dying.  They are the ones who need the standing ovation.   Acknowledge the reality of the disease.   Call us thrivers, metavivors, forever fighters, metastatic survivors, lifers, whatever…  But- say the words.  Make those who are dying of breast cancer the heart of the pink ribbon.   Rally around them.  Celebrate how they are living life over cancer.

See Robin.

Then, back up the applause with action.

We can all agree that pinkwashing (exploiting breast cancer to sell products) stinks. But, I am an optimist and a collaborator.  I still believe we can harness the good intent of humanity & direct enthusiasm for “fighting breast cancer ” toward efforts that will truly save lives. And it will start with people demanding money go to efforts that matter.  You can make choices in what you purchase and who you support that will start this shift.  Ask questions.  Support organizations and causes that fund research.  MBC research in particular.

Do you know that the people dying of breast cancer have felt so isolated and forgotten in the pink movement that they created another ribbon?  And, in an entire month they only feel recognized on one day – October 13th.

How is it that those who are dying of the very disease the pink ribbon claims to be “curing” don’t feel it represents them?  Well, because in a room full of 500 people they are forgotten.   The billions of dollars raised are focused on early detection (which doesn’t save lives – it detects cancer…), prevention and survivorship. Early stage survivors are afraid to talk about stage iv.  I get it.  When I was a stage 2 survivor I didn’t want to think about cancer coming back… about the fact that breast cancer can be terminal.  It’s a lot easier to celebrate survivors and the happy stories.  But, we have to be stronger.  If the hundreds of thousands of early stage survivors and their families became an ALLY for MBC  we could shift the focus of the pink ribbon.

We’re aware… how about Breast Cancer RESEARCH Month?

I have a dream that things will change.  That through advocacy, patient stories and donor direction we will start to tell the whole story of breast cancer.  Women who are DYING will become the very heart of the pink movement.  Early stage breast cancer survivors won’t be afraid of metastatic survivors but instead become their ally demanding more money for MBC research.  Outraged that 116 people die every day of breast cancer there will be a call to action to change the way money is spent on breast cancer.  While fly-fishing, pink convertibles and yoga retreats are wonderful – they aren’t going to save anyone’s life.   If we invest MORE money in understanding why cancer spreads and find more treatment options for MBC perhaps we can make breast cancer a chronic disease you can live with similar to success in AIDS treatment.

I will gladly put on my pink boxing gloves again, if we make them mean something that will save my life.

Who’s with me?

Examples of organizations I applaud for making a difference for MBC patients: