Celebrating 10 years of hope & Bennett

February 8th is a day of hope and joy.

On this day we found happiness and laughter in the midst of a scary time in our life. This is the day we welcomed a healthy baby boy into the world- Bennett Arthur MacGregor. Ten years ago, today.

I was diagnosed with cancer at the age of 30, 7 months pregnant. The scariest experience of our life… up until that point. We were blindsided and overwhelmed. No family history, healthy, active, organic eating young mom. The disbelief was like a tidal wave. Hitting us repeatedly.

I walked in to my first chemo appointment and the receptionist smiled kindly telling me I was on the wrong floor. “Sweetie” (I lived in Alabama) “OB/GYN is on the third floor.” I looked at her, pen shaking in my hand. I signed in. Deep breath. “No. I’m in the right place.”

They hooked me up to the chemo, explaining the toxicity of the adriamycin and cytoxan regimen. The “red devil,” as it is known. I watched poison pump into my veins. I felt our unborn child kick. 3 times we repeated this routine. Each time hoping the chemo wasn’t making our unborn child feel as awful as it was me. My hair fell out. My belly grew.

The world as we knew it crumbled.

But, we believed in our doctors and the hope they had for both me and our child. We clung to stories of others who had faced cancer while pregnant.  And on February 9th – we breathed a collective sigh of relief as our baby was removed from my toxic, cancer producing body. Full term, healthy and… with bright red hair. Sometimes life throws you humor when you least expect it. We don’t have anyone with red hair in our family. Our older child is blonde. As I looked down at our son finally safe in my arms… I never imagined holding a red headed baby. Could it be the chemo??? No one could say for sure… but it certainly made us all laugh. And he has truly lived up to the joke around the hospital that day that he we had our very own “red devil.”

Our little chemo baby. A miracle of sorts.

Ten years later he is a spunky, creative, sporty, caring boy. His first word was ball. And we never had to teach him to throw or kick. Everything is a competition. He loves to solve problems. His memory is uncanny. “Remember that time we were skiing in Big Sky and that little snowboarder hit that jump when we were on the chair lift?” Ummm… we were in Big Sky when you were five… kind of… why? The person next to me said, “he has some balls” – that’s what that player just said about his teammate. “Steal trap” Jay and I often whisper to each other when he brings up minute details and connects them to things happening today. And each time, I can’t help but think… will he remember me with such clear detail?

Each year Bennett and I take a nose to nose picture just like the one we took on the day he was born. Of course, now he complains. “Mo-om. Do I have to?” Yes. You do. If only he knew how much his birth meant to our family. How that moment of stillness, nose to nose each year connects us to his precious birth day. A snap of a picture, my way of reinforcing the hope his life meant and continues to mean in the face of cancer. Each year we can take it is another year I am here, able to love him and be his mom.

 

Happy birthday sweet Bennett B. We love you. And your awesome red hair. A constant reminder of living and loving life over cancer. I am so excited you are 10. And I am your mom.

$25 on the 9

January 9th came and went and I never checked up. Didn’t even cross my mind that 4 years ago to the day our world was rocked with the news that breast cancer spread to my bones after nearly 7 years “cancer free.” I became a metastatic breast cancer (MBC) patient. A diagnosis with treatment options, but no cure. Life expectancy is 2-3 years. Terminal.

Jay and I traveled to a large, well respected cancer center to talk with “one of the best” doctors we could find to make a plan. Said “expert” doctor basically outlined my demise. As I understood it, I would be dead in 3 years. Devastated, we came home and I called one of my designer friends and asked her to be the Creative Director for my funeral.

My friend straight up refused the position. She and hundreds of others rallied around me to live. I found doctors who believed with me that I wasn’t a statistic. I decided instead of waiting to die, I would live. I would make my body as healthy as possible and hold on for science… The longer I live, the more time there is for breakthroughs and new treatments. I found people who lived with this disease for 5, 10, 15 years.

Four years later I didn’t even think to remember this devastating anniversary because I was busy LIVING a HEALTHY and HAPPY life. Take that “expert.”

This disease is awful. Brutal. Unpredictable. Devastating.

I am one of the lucky ones. Over the past four years friends have been diagnosed and passed away, while I sit here relatively healthy. The reality is 111 people die each day of MBC. It is the leading cancer killer in women under the age of 50. I am an Exceptional responder – not the norm.

Breast cancer is many cancers – influenced by genetics, hormones and other factors. I didn’t do anything in particular that made my trajectory different than those who died. Just damn lucky.

I share this post today because I wish I knew about people like me when I was first diagnosed. The simple fact that you can live well with this disease wasn’t presented to me as an option. I am a small percentage of patients. But, I am not alone. I am often hesitant to share my good health at the risk of sounding unsympathetic. But, I am reminded by friends who are facing devastating progression that each time we see someone doing well with MBC it brings us hope. My joy is their joy. Their pain is my pain.

So, January 9th, I am glad to have forgotten you.

Instead I am going to remember moments like the first ½ marathon I ran with MBC, the time I swam with sharks, climbed a mountain and chased my kids on a frozen pond… with MBC.

I know there will be another date that rocks our world. A day when I face progression or treatment changes. But, instead I am focused on meaningful experiences- learning something new, spending slowed-down quality time with people I love, helping Hope Scarves reach more people, moving my body, renovating an old farmhouse. And, celebrating!

Actually, I write this from the sky, flying to Las Vegas where we are celebrating a dear friend’s birthday. I’ve never been. This friend is worth it – sparkles, champs, dancing. Craziness. Living life to the fullest– celebrating aging as a blessing not a disappointment.

$25 on the 9.

*I forgot to publish this blog post – until now that we are back from our trip. Indeed 9 was a big winner for me on the craps table (I’ve never gambled before). Most of all – it was a chance to spend laughter filled time with people we love.  Grateful for the chance.  What’s next?

Live a great story

They met every Friday. The oldest is 90. Together they sewed over 200 headcovers for Hope Scarves. But the story starts well before that.

Their machines were donated to the church by a woman who no longer could manage her successful sewing business due to illness. Hartz to Hearts sewing group emerged from Mrs. Hartz thoughtful donation.

Kenny and his family presenting their kickball donations to Lara

A young man started a security company. He had faced adversity in his life and once on a path to success made it a priority to support others facing hard times. Each year he hosts a kickball tournament to support a local charity. He saw Hope Scarves on the news.

The kickball tournament raised $1,500, which in turn allowed for the purchase of hundreds of yards of fabric delivered to the ladies at Simpsonville Methodist church on a sunny Sunday afternoon.

Wilda got the machines humming and the fabric became scarves.

One morning she visited her favorite consignment shop and chatted with the owner about the scarves for sale. Wondering what she did with scarves that didn’t sell Wilda told the owner about an organization she was helping called Hope Scarves. The owner herself was a cancer survivor and was quick to ask how she could donate scarves to support the mission.

“I didn’t mean to eavesdrop” a woman shopping mentioned as she approached Wilda. “But, I have a Hope Scarf.” She told Wilda and others gathered in the small shop how much her Hope Scarf meant to her. “They sent me love when I needed it most,” sharing that her scarf still hangs on her bedroom mirror, a daily reminder of the support that surrounds her as she faces cancer. She dug into her purse and gave Wilda all the cash in her wallet. “Use this to purchase your thread.”

Sewing machines, fabric, thread.

Legacy, resilience, understanding.

Before these scarves even entered our office – they had a story.

Erica so excited to see Wilda’s scarves

Wilda delivered the bags of handmade scarves on Thursday when our office is bustling with volunteers for our weekly scarf mailing day. As we “ooed and aahed” over the handiwork one of our regular volunteers looked up at Wilda. They laughed as they simultaneously recognized each other. Robin had been Wilda’s physical therapist.

Robin and Wilda reconnected

 

 

Unable to work full time right now, Robin volunteers regularly for Hope Scarves. She will help package and mail the scarves to others facing cancer.

And so, the story continues.

This holiday take time to appreciate the unique moments in your life. People and experiences weave together to influence your tale. Far more than things. Look around you.  Cherish the connections that create your own personal story. Our story helps us understand where we came from and where we are going…

Our stories connect us, help us find common ground and bring us strength.

May the light and love of the holidays warm your heart and bring you peace.

Live a great story,

Hope Scarves donates $200,000 to research

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…

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.