Brittney – Anchorage, AK

Brittany was diagnosed with Hodgkin’s Lymphoma at 31, just a few days after the arrival of her newborn son. Facing motherhood and cancer simultaneously can be the reality of many women in treatment, and she handles it with strength and grace. Thank you for finding us, Brittany!

Katie – Portland, MI

For the month of October, we continue to honor our community of Metastatic Breast Cancer survivors. Katie shows her spark and sass every day, LEANING IN to life, and saying YES (and NO) more. She has shared her story with Hope Scarves, and returned her scarf. We love you Katie!

“Gentle hugs and Courage” to honor Roberta

 

In 2007 when I was diagnosed with breast cancer I received a box of scarves from a friend of a friend named Kelly.  Each time I wore those scarves I felt her love and support.  When I finished treatment she told me to pass them on.  So, I took them to a conference in 2009 where I met this spunky young mom named Roberta.  She and her best friend Jen were there together. I was drawn to their genuine friendship and laughter.  Roberta was just starting treatment and scratching at her annoying wig.  So, I gave her the scarves in the lobby of the hotel.  We laughed through out tears about facing cancer as a young mom.  I showed her how to wear the brown scarf with maroon flowers and gave her a couple others too.   We hugged each other tightly.

Those scarves helped me when I was first diagnosed.  A practical resource to wear, inspiration from another person who had faced cancer reminding me I could too.   And, it moved me deeply to pass them on.  To share MY new found strength with someone else.  When I reflected on my trauma I started to heal.   I saw Roberta’s face light up as I gave her the scarves.  I passed along the same message that I clung to when I received them, you can do this.  We hugged, perched on the wall beside the hotel plants – clinging to each other for love and support.

This exchange and new friendship was the inspiration for Hope Scarves.  From this personal experience of both receiving the scarves and passing them on – I created this non-profit organization to help other people experience this same connection and support.

Today, over 12,000 Hope Scarves circle the globe.  Each Hope Scarf contains a scarf, survivor story & scarf tying instructions – traveling to people facing all types of cancer in every state & 24 countries.  The oldest recipient is 97 and the youngest, 2.

When Roberta finished treatment she sent these 2 scarves back to me and wrote her story to pass along with the scarves for the next recipient.   The closing line of her story is:

I am sending gentle hugs and courage to you in this journey. You are not alone!

Roberta and I would cross paths annually at the Young Survival Conference – each time connecting with a loud squeal and hug.  She and Jen worked the Hope Scarves booth – sharing the story of Hope Scarves and collecting scarves and stories from conference attendees.  We went out on the town, sharing stories of our families and and celebrating our grateful lives together.   Especially following the birth of her twin girls – she couldn’t stop smiling when telling me about how her family was complete with these two miracle babes.

Roberta spoke at our signature event, Colors of Courage in 2013 along with Kelly & Brooke, the first three Hope Scarf recipients.  It was so fun to all be together – connected by this brown scarf with maroon flowers and shared hope to live life over cancer.

In 2014 cancer returned to my world when I was diagnosed with stage iv metastatic breast cancer.  Roberta was one of the first people to reach out and support me thanks to the connection of social media.  She sent me cards and reminded me how strong I was.

Then, in 2016 Roberta also experienced the dreaded diagnosis of stage iv metastatic breast cancer.  I was one of the first people she called to talk through treatment options and cry.   She said, watching me live with the disease made her less scared.  Once again, our stories connected us.  I told her, “You can do this.”

Unfortunately, her disease progressed much quicker than mine.  Running through treatment after treatment with no response.  She endured toxic chemotherapy, radiation, scans, broken bones, fatigue & the agonizing reality that she was running out of options… and time. She marched on Washington, raised money and pleaded for more focus on MBC research. 

On September 22, 2019 she died.  Leaving a loving husband, 12 year old son and twin 6 year old daughters without their dynamic, funny, driven mom.  Their world would never be the same.

As tears stream down my face thinking about how agonizing it is that there weren’t more treatment options to keep Berta with her sweet family – I am driven to action.  Driven to turn this heartbreak into hope because that’s what she would do.

In honor of Roberta and the influence she had in the creation of Hope Scarves we are starting a Hope Scarves Partnership Program at Hillman Cancer Center, where she was treated.  It is our goal to raise $3,000 to sponsor 100 scarves ($30/scarf).   We will launch the program in early December with her friends and family.

AND, because Hope Scarves recognizes scarves & stories are practical and inspiring but not going to save anyone’s life.  We promise to match every dollar raised to start this program at Hillman Cancer Center with a donation to our MBC Research Fund in Roberta’s honor.

If you would like to help us celebrate Roberta & the friendship that lead to the Sisterhood of the Traveling Scarves – please sponsor a scarf.   (Or, 2.  Or, 50.)  Every donation helps another person facing cancer remember they are not alone.

Go to www.hopescarves.org/donate.  Please note in the tribute section that your gift is in honor of Roberta.

Our stories connect us.  Roberta’s story is intricately intertwined with the Hope Scarves story.  Encouraging us, rallying with us to bring more funding to MBC research, finding peace in the brutal and beautiful reality of advanced disease.   It is our honor to continue to share her words of support with other’s newly diagnosed.  In doing so her words of love and perseverance live on forever.

 

“I am sending gentle hugs and courage.”

With peace & hope,

 

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: