Oh, such a good story…

Everyone’s journey is an individual journey. It’s really important for patients not to try to fit into somebody else’s mold.  – Janet

Be thankful for every day that you get up. Take every day as a gift and don’t look back, only look forward.  Don’t hold things in, surround yourself with people who support you and let them support you! – Barbara

Buckle up bitch!!  It’s going to suck, but don’t give up. – Katie

A glimpse at the 127 stories we collected at our first STORY-thon Wednesday, April 18th.

As you know, Hope Scarves shares scarves & stories with people facing cancer.  Our program is growing quickly as we send about 50 Hope Scarves a week.  Which means we have to collect many, many scarves & stories to replenish our collection.  Survivor stories – the very heart of our work and what makes our program so special, have proven challenging to collect.  And, for good reason.  It’s hard to open up & remember a difficult time. Many women are worried their story won’t be “good enough” and find the idea of writing such personal words intimidating.

So, we are trying new ways to collect stories and make telling your story to Hope Scarves a meaningful, healing experience, as it is intended to be.  We hope that by sharing her story each woman feels a sense of release &  strength in knowing her words will lift someone else up.   The STORY-thon was our first step in that direction.   By creating this celebration of stories we set out to break down the barriers to storytelling and help women connect and share.

Our goal was to collect 100 survivor stories in one day through website, phone calls and walk-ins to our studio.  What happened was so much more.

We joined Louisville Mayor Greg Fischer’s Give a Day Week of Service.  Promoting that anyone who has faced cancer could volunteer their story as a way to get involved with his push for community service.   Mayor Greg Fischer stopped by to learn about our creative social entrepreneurship efforts.  We even put him to work with this week’s scarf mailing.  He picked out & wrapped the scarf we sent to Sue in Ohio.  Of course, camera crews followed and we were on three tv stations as a result!

Volunteers worked our “call center” from 10am-5pm.  4 phones were busy continuously as we called survivors and listened to their stories.  It was remarkable.  Survivors were appreciative to have the chance to tell their stories to caring volunteers.  For many it is just easier to have a conversation than to sit down and put it on paper.    Our volunteers were moved by the stories.  Some were filled with laughter.  Others, tears.  One volunteer, Melissa Swan, a beloved Louisville news anchor, spoke with a bubbly young woman facing breast cancer.  By all accounts you would think the conversation was going to follow the presumed path of diagnosis, treatment, fear, but then remission and relief, put it behind me, etc… However, this young woman shared that she is now in palliative care.  She has taken a break from treatment for brain metastasis because the side effects are debilitating.  And she just wants to live a little while without pain.  Melissa sat in shock as she listened to her story.  Smiling and asking caring questions with the poise of a news anchor… the conversation sounded like old friends.   They talked well beyond their scheduled “time slot.”  When Melissa hung up the tears flowed.   I have a feeling the same was true on the other end of the line.  Connection, storytelling, love.

Our Board Chair, Ben, called his wife, a breast cancer survivor and recorded her story.  Their story. To listed to his questions and see the compassion in the conversation was beautiful.  “I remember… that was hard…”  Another volunteer spoke with an 18 year old who has faced  cancer since she was 7.   12 surgeries, 9 chemotherapies, 6 radiation treatments. A childhood of on-going cancer treatment.  Nanette asked, “What encouragement do you have for someone else going through this?”  Anna’s response, “Always stay positive. look to friends and family for encouragement. Look for the positive side of everything.  That’s what I always try to do and keep a smile on your face!”

5 women stopped into our office together to share their stories.  They had all worn the same scarves that began when our board member Allison faced treatment.  Strangers to each other but connected through these scarves.  They remembered together where they had each worn the scarves and how much it meant to know someone else had worn them first.  “It’s a club no one wants to join” explained Allison.  “But, when you realize you aren’t alone and that there are other women who know what you are going through it makes it a little easier.”

Our stories connect us. Help us find common ground and bring us strength.

At the end of the day I sat down, exhausted, in our empty studio.   Overwhelmed with gratitude for all the people who made the day a success.   I sat quietly there, alone. I could feel the love and laughter hanging in the air.  I felt the experiences and wisdom of the storytellers. I felt the compassion of the volunteers who listened.  I felt the strength that comes with connection.   In the end, that’s what we all seek – isn’t it?  To feel loved and connected.

Cancer is isolating. Terrifying.  We aren’t able to take away the pain and fear.  But, if we create a bit of hope and connection by capturing stories and sharing them with others – we might possibly make one moment, one day, lighter.

I know we did today.

If you’d like to share your survivor story with Hope Scarves please click here!

 

Tell me a story.

We each have a story to tell.

Our experiences are worthy of being preserved.  The lessons we learn are valuable to others who walk a similar path.  And, in telling, we heal.

Hope Scarves has collected and shared nearly 1,000 STORIES with people facing cancer.  Each Hope Scarf we send comes with a survivor STORY, scarf tying instructions and information about our sisterhood of the traveling scarves.

We send about 50 Hope Scarves a week around the world- through personal requests, gift requests and our partnership program where Hope Scarves are shared through hospitals and cancer support organizations.   In order to keep up with our growth we have to collect hundreds of scarves & STORIES monthly.

To focus on the STORY side of the Hope Scarf, we are hosting our first STORY-thon on Wednesday, April 18th from 10am-4pm EST.  This creative event is in partnership with Louisville Mayor Greg Fischer’s Week of Service.    And, we need your help!

If you are a cancer survivor and haven’t shared your story with Hope Scarves yet, won’t you please consider taking 10-15 minutes to do so on Wednesday?  We know telling your cancer story is hard.  So we’ve taken thoughtful steps to make participating in the STORY-thon easier.

There are three ways to get involved:

  1. Sign up for a volunteer to call you for a 10-15 minute interview.
  2. Answer three questions on our webite using our online story form
  3. Stop by the Hope Scarves office at 141 N. Sherrin Ave in Louisville

If you have a scarf to donate please let us know when you share your story.

If you know someone who has faced cancer please spread the word about the STORY-thon and encourage them to share.

The STORY part of our mission is what makes each Hope Scarf so special.  Knowing someone else has faced cancer and is encouraging you creates a special connection between those who donate or receive a Hope Scarf.

For me, writing and telling stories is therapy.  I love to get my emotions out through words.  But, I realize this isn’t the case for everyone.  That’s why we created the STORY-thon… a comforting and convenient way to help you tell your cancer survivor story.

If cancer has rocked your world (as it has mine) please consider sharing your story with Hope Scarves on Wednesday.  A celebration of stories and those who tell them!

Please, tell me a story!

 

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,