Hope Scarves donates $200,000 to research

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In 2012 we launched Hope Scarves in New Orleans at a Young Survival Coalition Conference. A tearful woman visited our booth and wanted to share the story of her young daughter Lauren who had died of breast cancer.  I respectfully took the story and hugged this weeping mom.  Then, I tucked her story away and mentioned to my friends, “whoa.  We can’t use that story – we are hope scarves.  Not sorry for your loss scarves…” And we went back to collecting happy stories.  Turning our back to the reality of breast cancer for the easier path of celebrating survivors and passing along scarves and happy stories.

Then, in 2014 I faced my worst fear when, nearly seven years after my stage 2 diagnosis, cancer metastasized to my bones.  And, I realized how incredibly short sighted we had been only finding hope in the happy stories.  I came to understand that hope comes in many forms – not just when you “beat” cancer and put it behind you.  But in living in the face of any kind of diagnosis.

I also realized scarves and stories are inspiring.  But, they aren’t going to save anyone’s life.   So, we expanded the mission of Hope Scarves to “Share scarves, stories and hope with people facing cancer.” We recognize hope comes in many forms – and for us this would now include research.

The children of Hope Scarves and our first check for research in 2015.

The Hope Scarves Metastatic Breast Cancer Research Fund was created in 2015.  Our first donation was to Brown Cancer Center at University of Louisville for $50,000 to help determine the effects of simultaneous suppression of estrogen signaling and a key metabolic enzyme known as PFKFB3 on sugar metabolism, growth and survival of metastatic breast cancer.

This year, with the help of hundreds of donors we donated $100,000.  Two $50,000 gifts went to:

  • Memorial Sloan Kettering – Looking specifically at a new class of MBC drugs called CDK 4/6 inhibitors with the tools of DNA and RNA sequencing to to understand and overcome resistance mechanisms.
  • Dana-Farber Cancer Center at Harvard – Researchers are working to create a “Resistance Atlas” for ER-positive metastatic breast cancer, which should help inform treatment decisions for individual patients and propel the development of new combination treatment strategies. The MBC Project, which Hope Scarves is an Advocate Partner, is a vital part of this ongoing work, providing access to an unprecedented database of genetic information from patients with MBC.

What’s even more exciting is each institution matched our donation 1:1.  Making our total donation $200,000.

AND, as if that wasn’t enough… this year we helped found the Metastatic Breast Cancer Research Collective (The MBC Research Collective).  Recognizing small donations here and there aren’t going to move the needle fast enough, we pooled our money together to make a bigger impact.  The founding partners in The Collective are Twisted Pink, The Cancer Couch and Hope Scarves.   Together, we donated $1.2 million to metastatic breast cancer research this year.  We are excited to welcome new partners to The MBC Research Collective to help grow our investment and get even more money into the hands of the most cutting edge researchers working to find more treatment options for those living and dying of metastatic breast cancer.

I am incredibly proud of our organization’s ability to expand our mission to include research.  I hope other cancer organizations (breast cancer in particular) will recognize they can dedicate a portion to research too.  Teaching us to fly fishing, practice yoga and meditate are helpful to live life over cancer – but, think how significant it would be if each of these organizations also made a commitment to MBC research.    If you work, volunteer or support an organization such as this – pass along this post and give them my email address, lara@hopescarves.org.  I’d love to share how we expanded our mission and became a more meaningful, thoughtful, significant organization as a result.

I am grateful for all the donors who made our $200,000 donation to research this year possible.  I am grateful for continued stability in my health. I had a PET scan in November that showed continued stable disease.  In the midst of our joy, I realize I am one of the lucky ones.  Research isn’t moving fast enough to extend the lives of many people.  I’m not sure if we can change that… but I’d like to try.

Smiles gone too soon.

You can give directly to our research fund – where 100% of donations go directly to scientists working to find more treatment options for people with MBC.  Most of all, thank you.  I’m grateful to share this update and look forward to sharing more information about how we are making a difference for people facing MBC.

Scarves, stories, research… hope.

Reflection on October and hope for the future…

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Welcome November. I love November… it’s my birthday month, a time of gratitude, cozy nights sipping tea, reading by the fire. It also marks the end of a very busy month in the breast cancer world.

I recently met this spunky survivor at a speaking engagement. She is a 30 year survivor, who lost her daughter in 6 months to metastatic breast cancer. Light in darkness.

As I reflect on “Breast Cancer Awareness month” I wonder if all the hoopla and pinkness made a difference. Millions of dollars raised, miles walked and pink things purchased. What difference does it make? How will it be used to save lives? (said in a hopeful way…)

While we celebrated and cheered across the country, thousands died of breast cancer. Several were my friends. I have a really hard time attending celebration events that raise money for awareness while I watch young moms enter Hospice care. As I wrap myself in a pink boa I think of the agony of treatments that render women so sick and weak that they can’t get out of bed for days on end. Where are these stories in the pink narrative? Where is the compassion? the outrage? How have we grown so blind to this that we only tell the happy stories?

I am invited to many cheerful events in October… however, when I speak I bridge the happy with reality. Sometimes to the audience’s confusion or disapproval. I talk about facing cancer, of hope and determination. I share smiling pictures of our family as we persevered… but then I tell the “rest of the story.” I talk about the reality of metastatic breast cancer and how many are dying every day… 110.

I share the stories of Janice, Mary Ann, Sandra, Wendie, Shayne and more. I have lost so many friends that I can see their beautiful faces, but sometimes not remember their names. I remember the men I have met facing this disease in the shadows – as we forget to acknowledge they are victims.

One of the most vivacious, beautiful friends I know entered Hospice care this week. Another, a beautiful woman I shared a stage with at a Twisted Pink gala two years ago died. And yet another, a figurehead in the MBC community who founded Met Up is coming in and out of consciousness as she faces her last days on earth*. This is just one week in the reality of breast cancer. This is the whole story.

November, 10 years ago…

Ten years ago, on November 9th. Our world changed forever when we heard the words, “you have breast cancer.” As most of you know, I was 30 years old and 7 months pregnant.  One day picking out fixtures for our new home and the next face to face with an oncologist. We have never been the same. That first year of treatment was impossibly hard. Chemo, welcoming a new baby, more chemo, surgeries, pain, fear, anger, disappointment, loss… but ultimately hope. We made it through- changed, stronger, resilient. Determined to take this awful experience and turn it into something beautiful. Bennett was born and the world became bright in the face of darkness. We created Hope Scarves and funneled our pain into something meaningful to help others. But, that isn’t where the story ends. We don’t stay in the bright, joyful light. Because that isn’t the whole story. Like 30% of those who are diagnosed with breast cancer, seven years after the first diagnosis, the cancer came back. It tried to sink us again. For a while we were drowning.

But, we found a little bit of light in the darkness. We clung to it. And realized that joy and sadness can exist at the same time. Hope and fear.

Five smiles, gone too soon.

That’s what I want for the breast cancer movement. A recognition that we can celebrate survivors without forgetting about those who are dying. We can talk about prevention & early detection while devoting MORE money to metastatic breast cancer research. It doesn’t have to be a separate campaign or organization.  We have been successful at awareness, not let’s kick it into high gear to support research –  metastatic breast cancer research. Just as there is light in the darkness, there is room in the celebration for the sadness. We just need to work at it. It isn’t easy. Believe me finding my way as a metastatic patient is work, every day. Some days are harder than others.  So, as a breast cancer community – can we work at combining the light and the darkness to create a more realistic approach to breast cancer advocacy? Can we broaden the conversation & talk about living and dying.  Shift our focus to supporting and finding more treatment options for those facing death.  Teaching us to fly fish, meditate and do yoga is wonderful.  Sharing scarves and stories of hope is inspiring.  But, none of this will save our lives.  We must discuss and support metastatic breast cancer research.   We can’t be afraid of the dark.

Don’t forget Jill, Kathryn, Lisa, Mary Eleanor or Nikki.  Please.  Celebrate your survivorship while also demanding money for metastatic breast cancer research. We can’t abandon the hundreds of thousands who will die of this disease, unless we find more treatment options. Tell the whole story of breast cancer- the pretty and the ugly. Don’t be afraid to let darkness shadow the pink – it might lead to the brightest light of all.

Only then will pink really matter. Let’s make it so.

Lara

*As I hit publish, I learned that Beth died.  The most dedicated, determined leader of the MBC community today.  Her words and passion inspired thousands. Me included. This post is in her honor. May I help continue to push the needle she shoved with all her might.  Rest in peace, Beth.

From joy to sadness and back again… and again.

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Seems there have been a lot of experiences lately that remind us how fragile life is.    And also, how beautiful.  Balancing between the pain and joy is the messy part… the living we are all blessed to experience.

Welcome to Colors of Courage!

Last week Hope Scarves hosted our signature fundraiser, Colors of Courage.  A small event that started in my friend Lauren’s backyard 6 years ago.  Now, it has grown to fill an entire airplane hangar.  525+ people joined us to celebrate hope and raise money for scarves, stories and research.  I was overwhelmed by the connections – friends re-uniting, survivors laughing and crying together as they found common ground in their shared experiences.   Riley, a 20 year old UK student and scarf recipient who faces brain cancer shared her story for the first time.  She spoke with confident, trembling hands about how much it meant to receive a Hope Scarf and the strength it brought her.  Kendall, also a UK grad-25 years Riley’s senior – shared her story facing metastatic breast cancer. Surrounded by 30+ college friends there to surprise her with their support. When Kendall finished speaking Riley was the first person to stand and  applaud.  Their following embrace brought all those around them to tears.  These connections and stories – so much bigger than me or Hope Scarves.  Yet, they are Hope Scarves.  This is what the sisterhood of the traveling scarves is.  Connection.  Hope.  Support.

We raised $54,000 in 10 minutes for metastatic breast cancer research.  Overall we raised over $165,000 to support Hope Scarves.  The most ever for this annual event.

Women who have been supported by Hope Scarves gathered by the stage.

 

Each scarf has a story – and we have a shared story together.

Then, on Monday we awoke to the news of the worst mass shooting in US history at a concert in Las Vegas.  Our joyful hearts, broken.

Joy turned to sorrow.

As I watched the news in tears… exhausted from a busy weekend.  I also allowed myself to give in to the pain in my right hip.  For the past month I had quietly been dealing with shooting pain, terrified the deep ache was a sign of progression in my bones  I was determined to push through it until after Colors of Courage.  But, I couldn’t deny it any longer and as I watched the horrible events unfold in Las Vegas I thought about how our happy world could also come crashing down with news of cancer progression.  I scheduled an MRI.

And I tried to put it out of my mind.  I busied myself with Hope Scarves. I worked with Friends of Hope Scarves to pack up event supplies, I started on a long list of thank you letters.  I went to a meeting with a potential partner to share Hope Scarves and discuss opportunities to work together. I was surprised to see an old friend there, now connected to the company.  I paused in my remembering of the time our path first crossed… before metastatic breast cancer.  I shared our program and my personal story.  All the time wondering if a new scary chapter was about to start.  Shifting uncomfortably in my chair to ease the throbbing, the kind hearted president and I talked about the goals for Hope Scarves and challenges we face.  Then he handed me a check for $100,000 and humbly said he hoped it would help.  I was so overcome with emotions.  Tears fell onto the board room table – tears of joy and gratitude.  Hope Scarves has never received a donation of this size.   After our meeting I slowly limped to my car in shock.  Hours later I was laying in an MRI tube.

Anxiety turned to gratitude… and back to anxiety

After careful examination by my doctors and ugly tears on my part over the weekend (in between soccer games and horse races) I found out this morning that my pain is a stress fracture in my femur.  Not cancer progression!  

Fear turned to relief.

Who would have thought a stress fracture in your femur was good news.  (People living with bone mets get it.) . Thankfully, the fracture isn’t caused by a metastatic tumor, but it is concerning that my bones are weak.  My lack of estrogen (due to not having ovaries) and the environment caused by my medication puts me at risk for fracture.   But, we can address this – I can step up my efforts to strengthen my bones.  And, I can lay off the running for a little while… (ugh.) Of course,  this weekend is the Bourbon Chase and I am supposed to run 13 of our 200 miles for team Outrunning Cancer… (Don’t worry mom & dad, I’m not going to run).  I’m hoping to walk 3 miles or so… outwalking cancer… UGH.  I hate it.   I hate that cancer has taken this experience from me and made my body weak.  My body has betrayed me. I have been advised to not put weight on my right leg for 4-6 weeks to allow it to heal.   I have to use crutches.  I’m no good at slowing down.  The idea of hobbling around on crutches infuriates me.

Relief turned to anger

But, I am aware of a much bigger picture.   I think about the 58 people who were enjoying a concert until their lives were violently ended.  I think about my friends who are facing horrific pain and debilitating weakness from cancer treatment.    And I realize how fragile it all is.   How the call from my doctor could have gone much differently.  How my relief could have been sorrow, pain or fear.  A stress fracture and crutches is an inconvenience.  I remind myself there is much to be grateful for.

Anger turned to grace

Make room for both anger and acceptance.  Joy and sadness.

Life is a wild ride… Embrace it one day at a time.  With gratitude and love.

And crutches.

 

My new look… for 4-6 weeks. Smile not always included.

 

 

 

I was there…

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I had the incredible opportunity to unplug from cancer and the demands of “real life” for 2 months this summer.  As I reflect on this time, which seemed to pass in the blink of an eye, I am filled with gratitude… with a thin lining of sadness.

As I drive south toward home, tears stream down my face.  Hidden from view behind my large orange sunglasses.  My tears: sadness that these fun times are behind us,  joy for the memories we made together, concern for the stress reality brings, pain for my friends who are too sick to have a summer like this.  Fear of when this will be our reality too.

During the summer I just let it all go… schedules, consistently healthy choices, bedtimes. I love that for our time in White Lake – we almost always have another little kiddo sleepily stumble out of the bedroom with our boys in the morning.  Sleepovers that last for days, ice cream for lunch, swimming, sailing, fishing. Running down the sand dunes with arms wildly flailing until you hit icy cold Lake Michigan. Sharing our little slice of heaven with visitors from Louisville and Alabama. Spending time with my parents and lifelong friends.  Each day unfolds with spontaneity.  My son Bennett lost his shoes for days (at least a week, not really sure – days blur together) And it didn’t matter. Literally barefoot and free….

Peace like a river

Then, we spent time at Brule Ridge, our family’s place in the upper peninsula of Michigan where the boys shoot bb guns, ride 4 wheelers, swim in ponds and catch crayfish.  From sun up to sun down, we are outdoors.  One afternoon I even sat and read a book in one of the gardens- surrounded by hummingbirds, swooping in and out of the orange flowers that surrounded me.  I closed my eyes and listened to the constant song of the river… until I was shot from the deck above with a water gun and the pleading of two little boys to take them four-wheeling.  So is life with boys! Then on to Petoskey, where we spent time with my mother in law and our 95 year old remarkable great grandmother.  As her body slows and her health falters we simply listen to her stories. To live that long… what a story she has. We missed pre- season soccer games for this.   Without a second thought.  Priorities.

Before this was our trip to Glacier National Park and K Bar L Ranch in Montana then our family reunion at Fish Lake.  So much packed into one summer…

Now we are headed home.  Thankfully our kids are eager to see friends and start the soccer season.. I mean school year.  They can’t wait to “see their bedrooms.”  Completely oblivious to my tears, in their minds- summer is just a part of life.   They love it, they embrace the freedom and then they roll back into town ready for whatever lies ahead.  Their excitement buoys my sinking optimism as I plug back into the news, current events around the world, cancer & obligations.

Hiking into Nordhouse Dunes.

I think about it each year, what if we just unplugged for good.  Found a place where we can just be free.  Free of the stress of professional obligations, devastating world events, over-scheduled craziness and cancer…  Especially when we know how fragile it all is?

I guess the reality is…. reality.  We have to be aware of world events because we live in this world.  We must teach our children to live in the real world, face adversity and seek love. Jobs are important because, well food is a necessity and I like to shop at Whole Foods. Medicine is keeping me healthy which we get at a low cost thanks to good insurance, which unfortunately is tied to employment (that’s a whole other topic). And, let’s face it, cancer is actually not something we can just escape forever.  Reality also has a lot of wonderful parts to it too – friends, school, soccer, Hope Scarves, backyard gardens, parks to trail run, ice cream shops. So, we plug back in.

But, we carry the carefree days of summer with us.   As memories that make us who we are.  Maybe our kids won’t remember all the details of the fun things we did together… but,  I know these experiences shape them into who they are.  They might not always remember the 3 mile hike to the dune campsite or the spectacular sunset where we splashed in the waves and body surfed until the beach fire roared into the night sky.  But, these experiences shape them. And, I was there.  I was there for all of it – laughing and smiling and soaking up the love. I wasn’t bogged down by the fear of the perceived future. Or counting the days until we left.  I lived fully and intentionally in each and every moment.

On this night – all is right in our world

I carry this with me.  Into whatever life holds for us.

Living life to the fullest – one sun kissed, wave splashing summer day… or laundry laden, weed pulling, bill paying day at a time.

life is beautiful.  live it. live it all!

Lara

The most spectacular sunset of the summer and words to live by.

 

 

summertime freedom

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We are deep into our summer vacation… from cancer.

All saddled up!

Our fun started with a family trip to Montana to explore this year’s National Park, Glacier. Then, 5 days “beyond all roads” at a remote ranch where the north and south fork of the Sun River meet. Literally 10 miles from the closest road, you only access this little slice of heaven by boat or horseback.  We fly fished, road horses, hiked, ate delicious food, sat by the fire and simply took in the majesty of the Bob Marshall wilderness.  It was the first time our family has truly unplugged- there was no cell phone or wifi service and we all took a big deep breath.  It was remarkable how much we needed to not look at a screen, check email or be “available.”  Instead of posting about our adventures – we simply experienced each day with those right around us.  And, like other adventures cancer wasn’t invited.  We could only bring one 50 pound duffel… and it takes up way more room than that. Unplugging from it all and connecting with each other.  What a special gift.  And, the trout.  Our children are ruined for fishing after this. Practically every cast of the fly was a sparkling rainbow.  I even landed a cut throat worthy of a painting.  Released it back into the mountain run off with a simple intention of freedom and thanked it for playing.  I watched my mother and father-in-law wade in the icy water to find the perfect trout hole and horseback ride for hours through fields of wildflowers. They put this trip together to take their children and grandchildren on an adventure to share what they love together – fishing and riding.  Watching them, I ached to my core to be able to do something as special with Jay and our boys one day.  Quickly shaking away this dream and wiping away the tears… for the mountain, stream and laughter before me right then.  Living in the moment.  Holding onto a little bit of hope for what might be…

Now we are settled in to our “summer home” in Michigan.  I have no idea what time or day it is.   My day is marked by my morning workout with friends and cocktail hour.   Daily choices… swimming or sailing?   Fishing or paddle boarding?  all of the above?! Jay and I celebrated our 17th wedding anniversary with a sail on the little sunfish I taught him to sail on when we were dating.  We went for a run and took the kids by the big red barn where we were married.  We celebrated my parents 70th birthday year with a surprise at our annual family gathering at my grandma’s home that has been a family cottage for 4 generations.  “Plewka-palooza” as it has come to be known.  I watched my grandma watching her children, grandchildren and great-grandchildren.  Over 45+ of us all there because of her.  What a blessing to be able to look upon all that love. Might I see a grandchild…?

We gathered with my mom’s extended family the following weekend for a day on the shores of Lake Michigan and released lanterns into the starry night to celebrate moments big and small for our family – two engagements, birthdays, anniversaries.   As I watched the light fade into the sky, I gave thanks for another year of stability and the gift of health.

The chance to travel, unplug, spend time with family and friends are not lost on me. When so much of this world seems consumed with hate- I wake each day to the sounds of waves and a prayer of gratitude.   Thankful my life allows me this time together with people I love.  Aware this could all change in an instant.  But, instead of focusing on the precariousness, I live each day.  Fully, gratefully, intentionally.

I know many people can’t do these kinds of things.  Cancer, commitments, complications.  There is a lot of pain and sadness in the world. Life isn’t all sunshine and lapping waves.   Find some joy and celebrate it.   Cherish the moment right before you. Jump in the ice cold water  – let it take your breath away-  feel how alive you truly are.  Love!

We are living happily ever after… one day at a time.

cheers that!

Lara