Rethink Pink

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:

 

 

Life is for Celebrating!

Life is for Celebrating.

There is something magical about making a toast. Pausing for a moment to share gratitude, honor an accomplishment, lift someone up. I love the tradition of looking each person in the eye as your glasses clink. Create connection, a moment to simply say, I see you.

It’s not about the glass being filled with alcohol. I remember when our oldest learned to drink from his own cup – we quickly also taught him to say, “cheers” before he sucked it down. I can still see him running around the kitchen, sippy cup extended to tap each person’s glass.

Since my metastatic breast cancer diagnosis in 2014 experiences became more precious. I love an excuse to celebrate big and small and spend time together. It’s this same sense of connection that led to our event Bites and Bubbles this Thursday, September 19th at The Champagnery. Gathering together to support each other, pause in reflection, celebrate and connect.

We’re celebrating living life over cancer. Living life over whatever obstacle you face. We’re celebrating our shared vulnerability and resiliency. It’s not about living a perfect or happy life. It’s about giving ourselves grace, falling down and getting back up. And especially finding hope in the midst of the fall.

If you are in Louisville,  we would be honored for you to  join us Thursday, September 19th from 7-9pm at The Champagnery (1764Frankfort Ave). We’ll gather for a short program and toast around 8pm. There is no cover charge or RSVP. You will have a chance to sponsor a scarf for $30 if you wish. Let’s connect, hug, celebrate and toast living a hopeful life!  If you can’t join us –  make a point to pause, propose a toast, look someone in the eye and create connection.  Toast your own unique and beautiful story.  Life is for celebrating!

 

Cheers –

Live a life well loved.

Writing usually brings me immense joy, but the past couple months – I found it hard to sit down and just do it.  I think that’s because I put the idea of “writing a book” into the universe and suddenly writing became intimidating.  (Isn’t it crazy how that happens?) I look at it as I […]

Outrunning Cancer

I’ve come to refer to our life as a rollercoaster. Because we live such drastic ups and downs determined to have fun and laugh along the way.  A quick recap:

December 2018 Fluid suspected in CT scan around my lungs – couldn’t be found when attempted to drain it… a miraculous holiday followed filled with love and laughter following this “Christmas miracle.”

February 2019 Fluid showed up again in scans – this time drained 1 liter, but came back with no evidence of cancer… another happy dance.

March 2019 Fluid back – drained over a liter again, Tests this time confirmed malignancy. Started an oral chemo. Hoping it will take care of fluid… and hold me stable for a good long while.  Traveled to Costa Rica and lived in the jungle for a week – no room for cancer in our luggage.

Then, just days back to reality from our amazing adventure a scan in April showed the fluid around my lung is still there, but we are hopeful the chemo will start to knock out the cancer cells and eventually the fluid will absorb back into my body… This waiting is hard. The wondering is agonizing… running is exhausting.

But, I am determined to not let this sideline me from participating in our annual OUTRUNNING CANCER race this Saturday, April 27th.

Each year Hope Scarves teams up with Kentucky Derby Festival marathon to host OUTRUNNING CANCER –  a chance for runners from around the country to raise money and pound the pavement for Hope Scarves and MBC Research. I ran each of the last 5 years.  And, I am not sitting this one out!

Our goal is 100 runners and $55,000 to support Hope Scarves and our metastatic breast cancer research fund. As of today – with 5 days to go – we have 105 runners and have raised $41,293.

My goal is to raise $100 for each mile I run/walk. That’s $1310. Please consider making a donation to support me in this race.

No donation too big or too small!

I know each step I take is bigger than just me. I run/walk for friends facing cancer and those we’ve lost. I plan to wear names on my shirt and  carry their story with me each step. If you’d like me to run for you or someone you love please donate and send me a message to hello@hopescarvs.org and I will add them.

Running has always been therapy to me. An escape into the woods, the beating of my heart a reminder of how alive and strong I am. A midnight race through bourbon country when all I hear is the pounding of my feet on a country road. When I run I feel free. This race is about proving to ourselves and each other we are stronger together. As a team we are a powerful force in the fight against cancer. And, this year it’s about giving myself grace. To accept where I am in life – the fluid around my lung doesn’t allow me to run like I used to.  So this year I will be walking most of the race… But no less determined. Slow but still moving forward. However you get to the finish line… it begins with one step.  And, then another.  A lot like facing metastatic breast cancer.  You just put one foot in front of the other…

I would be honored to have your help to reach my goal of $1,310 by April 27th. Every donation – no matter how big or small – is greatly appreciated.

We have miles to go… but closer with each step. We are Outrunning Cancer.

Thank you for your support!