This moment… summer!

For those of you who have been reading the blog for a while know summer really starts for me when we head to Michigan.

Jay and I grew up in Michigan. I was never more than a couple miles from Lake Michigan my entire life until careers took us on adventures in Europe, Alabama and Kentucky.  We made a promise to each other when we moved that we’d have summers in Michigan.  And, we have.  Each year our children experience the same joys of Michigan that we did growing up – fishing, sailing, body surfing, dune climbing and much more.  We treasure time with family and friends who are like family.  It feeds my soul. It has come to feed all our souls.   My blog posts reflecting on summers of 2017, I was there and 2016, Here Goes are examples of this.

After my metastatic diagnosis in 2014 it was time in Michigan that brought me back to life. Where I found my laugh and wrote “We’ll always have this summer.”  What a blessing that we’ve had 4 summers together in spite of this disease… experiences many families don’t get.

So now, as we drive north, five summers since my MBC diagnosis, I am eager to see what this summer holds.  It’s moments like this that cause me to pause and reflect.  A friend of mine was recently wearing a workout shirt that said “Don’t look back” on the front and “You’re not going there” on the back.  “Huh,” I said as I read it.  I couldn’t help but think how important “looking back” is to me. Memories are sacred.  Not knowing what the future holds – I work hard to “create memories” for our children. To teach them lessons that will plant a seed of compassion, confidence, adventure.  Reflection makes me smile.  It also reminds me how strong I am and how much we have endured.   I know I can’t go back…  but, I don’t want to forget. This blog is a perfect place for me to capture these feelings.   (And, I’m grateful others enjoy it too!)

Speaking of time, I’ve been getting after my health lately – working out with a trainer, running and yoga.  While I’ve loved the feeling of getting back to the active lifestyle that nourishes me… my femur isn’t so sure.  So, I’m starting this summer with the reminder that I need to take it easy. It was last summer when I developed this stress fracture… so my morning runs to the pier might be more like walk/runs.  I’ll take it easy with my work out group (I’ll cheer you on in the hill repeats…)  I’m thinking swimming is going to be my go to – luckily I know where to find a lake.  In perspective, I am MOST of all GRATEFUL for this chance for our family to unplug and be together in a place we love, with people we love.   When we left Michigan last summer I didn’t know if we’d be back the following summer or how I would feel.  Here i am! A little broken… but here.

My first step into Lake Michigan

For all of us, the world is a different place than it was last year. None of us are the same. As a nation we appear more caught up in division than unity, sadness seems to permeate our country.  Families torn apart, senseless shootings, uncontrolled drug addiction and extreme weather.   And, what’s up with Fortnite? My kids are obsessed.

Through it all – I am reminded how fortunate we are for time. Time to laugh, connect with people we love, to breath deeply and live.  While we look ahead and we look back – what we really have, fully and completely is this time right here.  May we find a way to be content, grateful and live as fully as possible in this moment.

Here we go… Bring on summer!

My first morning run/walk. Slow and steady.

 

 

A guide to Metastatic Cancer… ?

Since my cancer diagnosis in 2007 I have continually sought opportunities to share my story. In doing so it helped me process my feelings and experiences. I started Hope Scarves as a way to help others do the same. When the cancer spread to my bones and became metastatic breast cancer (MBC) in 2014 the first thing I did was seek connection to people who shared this experience. Our common story was empowering. I was not alone in my fear, anxiety, devastation. Or in my hope, joy and celebration.

As I made my way through 4 years of life with MBC I realized how very different our stories are as MBC patients. While my treatments are able to keep cancer from growing in my body (for now) many are not this fortunate.

Balancing my hope and joyful life with the reality of this disease is difficult.

So, when asked to be featured in the national Metastatic Cancer magazine I struggled with the opportunity. Of course, I was honored to share my story so that my experience might bring another person hope. I was eager to spread the word about Hope Scarves and our work to share scarves, stories and hope with people facing cancer. I wanted to fill the pages about the need for funding in the area of MBC research and our work to raise money for research.

Most of all I didn’t want to sugar coat the experience or add to the endless stream of happy, laughing cancer images. MBC is ugly. It rips families apart, kills young vibrant women, steals motherly kisses from children and is most likely going to kill me.

How do we tell the whole story? How do we show the joy of living life over cancer while not forsaking the despair of the disease and the imminent need to increase funding for MBC research?

I’m not sure… When the magazine arrived at our office I was both excited and frustrated. My article doesn’t include a lot of the “ugly” I talked about in my interview. Does my smiling face on the cover hurt my desperate plea to increase funding for people dying of MBC? Especially knowing two of my friends whose beautiful smiles once graced the cover have since died of MBC. “It needs to be more raw…” I think to myself.  Or, perhaps not.  Maybe this article will be read by a young woman who is drowning in her fear and needs to know she might have 4 incredibly healthy years ahead of her as I did… maybe my story could bring her light. This balance of hope and desperation is arduous.

This week my friend Dianne was killed by MBC. She leaves behind two young sons and a heartbroken husband. Since I met her in 2013 she has endured full brain radiation, gamma knife surgeries, toxic chemotherapies with side effects of fatigue, constant vomiting, debilitating pain and more. She never experienced a long stretch of wellness. At the end she was incoherent, incontinent and ravaged by the disease. This is MBC.

Her death adds to the list of more friends than I can count who died since I became aware of the devastating world of MBC in 2014. Today the pain outweighs the joy. My anxiety is in full effect. I have a twinge in my side that has been nagging me for a couple weeks… is it MBC? Is my number finally up? Is it my time to join my friends in the endless, toxic treatment carousel of MBC that eventually ends in death?

As these feeling weigh on my heart I am traveling to Florida for a girls weekend. We will laugh, talk about our kids and just celebrate life. I am grateful for this time of healthy and stability… to lead a “normal” healthy life.  Gratitude overflowing.

But, see what I mean… My see-saw life.

A day doesn’t go by that I don’t worry about my health and the future. And, quite frankly, a day doesn’t go by that I don’t laugh spontaneously, worry about normal life things like carpool and scheduling my dog’s (very overdue) grooming appointment.

Life is tricky. Complicated. For all of us… I know there are others who balance wide swinging emotions too – Grief, addiction, depression. I’ve learned to allow my emotions to swing – to not get frustrated when I’m anxious, but to let the feelings come. To acknowledge and accept them.

This is my story. A story I never imagined owning.  But, since I do, one I am trying to use to support others.  Whether in finding connection through Hope Scarves, raising money for MBC research or trying to tell the whole story of cancer.

And, always, always grounding myself in hope.

My hopeful life.

I am proud to be a founding partner in the MBC Research Collective with Twisted Pink and The Cancer Couch. Together in 2017 we raised $600,000 that was matched 1:1 by an anonymous donor for a total donation of $1.2 million for MBC research. Our goal for 2018 is even bigger. Learn more about our MBC research efforts.

Photo credit to my talented friend Amy Barber of Bluegrass Bebe Photography

 

 

Hope, for the win!

Every year outrunning cancer is a powerful display of love, teamwork and support at the Kentucky Derby Marathon.  Every year, I love it.  But, somehow this year broke all records!

84 runners took to the streets of Louisville on Saturday, April 28th in hot pink race shirts that literally glowed in the sunshine. After three years of rain, the weather was perfect.  At the start of the race we had already hit our $50,000 goal with $68,000 in donations.

Today, as donations still come in, our total is $70,838.

The most ever raised for this event!

This money will send Hope Scarves to people facing cancer around the world and help us reach our goal of $100,000 for metastatic breast cancer research in 2018. This race is so much bigger than the fundraising.   Here are some of the highlights:

  • 15 men ran the marathon together carrying a United States flag and a HopeScarves flag.  They are part of a work out group called F3, which stands for Fitness, Fellowship and Faith.  Together they raised $13,006.  Their team Captain Dan Bayer’s wife is a Hope Scarf recipient and storyteller.   He knows first hand the power of hope and connection. Each time they handed off there were high-fives, fist bumps and an amazing energy of camaraderie.   I am proud to have these rockstar guys on our team.
      
  • The Louisville Collegiate Women – made up of 5 teachers from my sons’ school were equally impressive.  Their dedication shined as they powered through the course with fierce determination – all the way to winning the women’s relay division and coming in 3rd overall for the marathon relay.  Never doubt what a group of strong women can accomplish.    

3. Our 2018 honorary Team Captains lead team Leggin it for Lara.  In their 70th year, both Art and Sue Plewka ran (yes, ran!) their 5k legs and radiated love with Anne, Eric and Lindsay for the 5th year in a row.  We are all grateful for team mom, Anne Sanders for the snacks, water, phone chargers and precision driving skills to get us to all the transition points!

 

  1. The Go Hope team took the grand prize for top fundraising team with $14,050 in donations- bringing Michigan love to the bluegrass.  And they took on the 26.2 miles with the same commitment to fun.  Running with their own speaker for on demand inspiration & making each other and runners around them laugh.
  2. The Michigangster team brought our furthest traveled runners with Sara coming from North Carolina and Ally & Juliane traveling for two days from Minnesota to be on the team. Together they raised $12,742 & showed the grit of the snowy north!
  3. My team, RitchieMac, faced an early complication when the three 13 year olds set off to run their 3 mile leg… and never arrived at the exchange zone.  Missing the turn for the marathon, they ended up on the mini marathon course and instead ran 8 miles to the finish.  With crowds of spectators cheered them down the final stretch, the three crossed the finish line together.  Meanwhile, the parents were freaking out… until they borrowed a cell phone to call and tell us how awesome it was!  We completed the marathon relay without our baton – and a good story to tell.  Big thanks to Robin and Doug who manned the Hope Scarves tent in charity village and kept track of the exhausted stinkers until the rest of us finished…
  4. Many more ran on teams of friends and family.  And 25 ran the “whole mini”as individuals – 13.1 miles of sunshine and just about perfect running conditions!  Everywhere you looked you saw bright pink and high fives!

And, I ran/walked 7.8 miles as the anchor leg for our team with my friends Laura Ritchie & Chris DeYoung.  I got the hand off from Bennett – who ran 3 miles, leaving his adult chaperone, Ally, in the dust.   The weeks leading up the race I was bummed to not be at full strength to run 13.1 miles as I have in past years.  But, all that quickly faded as I absorbed the energy and excitement of being on a relay team.  There is something special about moving the baton 26.2 miles together.  The passing on, with a hug and words of encouragement struck me deeply.  This is exactly what we do each week at Hope Scarves.   Our very work is a relay.  Hello!!

How appropriate that this is how we support Hope Scarves – in a relay.  It took injury for me to see the joy that comes from completing this race together.  That when you simply can’t do it on your own- you lean on others.  You do it together.

I felt empowered as I ran/walked those final miles.  Careful to go slowly and grateful to simply be out there.  One step at a time, my heart pounding, my legs, strong.   At mile 26 a sea of bright pink was waiting for us.  20+ people jumped onto the course to run to the finish line together.  As we made that final turn my eye filled with tears and I pulled out my phone.  I just had to capture it. I had to preserve this feeling of love and hope. Click here to watch our facebook live finish. I’m grateful to share it with our 544 donors and all the people we support at Hope Scarves.  Because you were all there,  Outrunning cancer!

On Saturday, Hope won.

  

 

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!