Thanks and giving.

I was ready to put cancer away for Thanksgiving (which also happens to be my 42nd birthday).   It’s just been a lot lately, but as I woke up this morning at our farm I realized first I needed to get out some feelings… and process the past couple weeks.  It’s quiet… the boys are sleeping, Jay is hunting.  So, it’s just you and me.

The MBC community lost two young, passionate advocates this week. (Actually, we lose 113 people each day… each and every day… according to statistics.  These are just two of them.)  Caitlin and Laura were constant voices in the conversation around living life to the fullest and demanding more money for MBC research.  For all the annoying aspects of social media (said by a mom of a 13-year-old) it is a powerful tool of connection for our community, especially young women facing MBC because you might not know someone in your own city.  In my case the women I was close with in Louisville have died so I keep up with friends living with this disease online.  Hundreds of them.  Many I haven’t met in person.  Caitlin was a friend to thousands with her candid storytelling and beautiful smile.  She was 34 years old when she died.

Caitlin’s dream was to get married – she did so against all odds.

Laura and I only met in person once, but it was significant.  As many of you know (a little backstory) …

I received a box of scarves from Kelly when I was first diagnosed.  I wore her scarves throughout my treatment.  Both as a practical resource and inspirational gesture, these scarves carried special meaning for me.  When I finished treatment, I asked for her address to send them back and she said “just find someone who can use them.” So, I took them to a YSC conference where I met Roberta.  I gave her several of the scarves.  I realized how much these scarves meant to me when I received them, but also how empowering it was to pass them on and share my story. (This was my inspiration to start Hope Scarves.) One of my favorite scarves was a brown scarf with rich merlot and gold flowers. Roberta wore these scarves and then passed them on to her friend Laura.  In 2015 Laura brought this scarf back to Hope Scarves and added her story.  You can watch our silly exchange in this short video.  I was so giddy.

All three of us progressed to metastatic breast cancer.  And, I tucked this scarf away feeling it was too special to send out without knowing if we’d get it back.  I also thought, I’d like to have it when I needed it…

This past week Laura died.  While we hadn’t seen each other for years we had a constant online conversation- commenting on each other’s activities, growing kiddos and travels.  I will miss checking in with her.  Her family was her life.  I know how much they are hurting and pray for peace and acceptance.

Laura and her beautiful family

Recently, Roberta got the news that she has to start toxic chemo treatments again after the cancer progressed on all the other options she tried.  This is devastating because many MBC patients were on chemo as early stage patients and know how hard it is… however, the reality is now the duration is more uncertain.  Having to attend her dear friend Laura’s funeral while carrying the burden of treatment changes is just too much.  Roberta has three children – a son about Bennett’s age and adorable little twin girls.  She has a witty humor and quick laugh.  I know her heart is heavy this holiday season with all she is carrying.

love you Berta!

All this as I carry my own uncertainty as to whether my October radiation treatments were enough to hold off my own cancer.   My next scan is December 20th…

I had to turn all this heartbreak into action.

I knew it was time for our favorite scarf to head back out.  I wrapped it up on Tuesday with four beautiful stories of the women who wore it-  Kelly, Lara, Roberta & Laura.  Now heading back to Roberta.  I hope reading our encouragement and her own words will bring her strength.

A very special Hope Scarf

But, that didn’t seem like enough.  Many of you know, when I developed metastatic breast cancer we started a MBC Research Fund recognizing that scarves and stories are practical and inspiring but they weren’t going to save anyone’s life.  It we truly wanted to live out our vision, Change the way people experience cancer, we had to invest in research.  100% of the money we raise for MBC research goes to research. 100%.  In addition, our board designates an additional amount raised in our general fund to research.  Our final amount for 2018 will be announced in December. We founded the MBC Collective with two other organizations and leveraged a 1:1 match so when donors give to Hope Scarves they know their research investment is matched dollar to dollar.

So, to truly honor Laura, Roberta and the shared story of our scarf, research had to be included in our actions.

Laura was an active supporter of Metavivor, another important nonprofit organization that raises money for MBC research.  So, in honor of Laura, Roberta and our shared story – we made a challenge- each dollar raised in memory of Laura will be matched by Hope Scarves up to $25,000.   So that together we can fund a $50,000 young investigator grant that scored excellent in Metavivor’s peer review process but fell outside their current funding capacity.  I am excited to work together with Metavivor to make this $25,000 donation to honor Laura and our shared story.

We are the authors of our lives.  We can’t change the fact that cancer invaded our bodies, or that it is killing our friends and tearing apart families.  While the tears are still fresh, we can choose what we do next.  We turn our heartbreak into action.

Seems there is a lot of heartbreak right now – in the horrifying wildfires, in victims of gun violence, hate crimes and addiction.   Perhaps more than ever we need to stoke the power of love.  Lend a hand, do your part to bring love to the world.   As you gather with friends and family, give thanks and turn this gratitude into action.  What can you give?

There is healing power in helping others.

Happy Thanksgiving.

I’m ready for our family to fill K bar M Farm with love and laughter!

 

Following this post – I received several inquires with how to donate to MBC research.  Thank you!  Click below:

Hope Scarves MBC Research Fund

Metavivor – please note Laura Williams memorial fund

 

 

11 years…

I’m 30 years old, 7 months pregnant, I dress up for Halloween wearing an orange shirt with a pumpkin drawn on my big round belly.  Our little two year old dinosaur trick or treats for the first time with his monkey and princess friends.

Three pregnant mamas – Halloween 2007

I am planning the McWane Science Center annual fundraiser,  Beaker Bash.  This year, in collaboration with our new dinosaur exhibit, the theme is “Bad to the Bone.” I connect with a local motorcycle gang who agrees to  line the red carpet/valet drop off with their Harleys to welcome guests.

We are living in a rental house while we renovate our historic little 2 bedroom/1 bath into a two story, 5 bedroom/3 bath home for our growing family.  I design our kitchen and pick out countertop.

I run the three mile loop on Wednesday night, a little winded at 7 months pregnant, but feeling great.

I go to my 7 month check up with Dr. Sharp.  Running through my list of pregnancy questions, the last one being the pain in my left breast… a little bit of blood.   The Dr. is immediately suspicious and sends me the same day for a biopsy.   Slightly annoyed to miss my Target run, I agree.

Two days later I am sitting in a salon with Wills teetering on my pregnant lap as he gets his blond curls trimmed.  My phone rings. I answer it.

The next I know I am looking into the mirror at a tear streaked face I barely recognize.  Wills puts his pudgy baby hands to my face and asks, “mama, you have a boo-boo?”

That was 11 years ago.  11 years today.

What an amazing rollercoaster of love, laughter, adventure and sadness these 11 years have been.  I’m grateful that there have been more smiles than tears. While cancer has taken a lot from me.  My breasts, my hair, my ovaries, my invincibility…  Cancer has given me an enhanced appreciation of the joy of being alive.

In 2014 – every cancer survivors worst fear… reoccurrence.  Metastatic, stage iv breast cancer.  I experience a deep, dark depression, anxiety, fear.

We came to understand that when the timeline is shortened – you savor moments even more.  We doubled down on hope.

Today, as I think back to that young mom terrified with the news of a cancer diagnosis and everything she endured… I am proud of her.

I could never have imagined the chapters that would follow in my story.  As I think back on the past eleven years I think the strongest theme is acceptance.  Accepting the heartache, the disease, the loss of what I expected for our life.  In each acceptance, a little light is sparked in the darkness.  A tiny prick at first.  But, then it grew stronger.

I read once that eternity is found in the moment of acceptance.

For a sentimental person, with a major case of FOMO (fear of missing out) this is everything.

It hasn’t been easy and I know there will be hard things to accept in the future.  But, I’m grateful I have come to this place. I’m grateful for today.

Turning heartbreak into love.  For 11 years and counting… My hopeful life.

Our family of 3. December 2007

 

In the thick of treatment. Spring 2008

 

Bennett’s baptism, 2008

 

My brother’s wedding, summer 2018

 

 

I am safe.

Thank you for the outpouring of love and support as we faced our first MBC progression diagnosis. It’s been a crazy couple of weeks – hosting 500+ friends for Hope Scarves annual event, Colors of Courage (a huge success… more on that below), soccer tournaments, scans, doctor appointments, phone calls, more scans, escaping to Maine for a family adventure in Acadia National Park and now today… sitting at the airport in Washington DC on my way to a speaking engagement… finally at a point where I can reflect and write.

I was hesitant to share an update until we had a conclusive plan.  Which we do now… here is a recap of the cancer rollercoaster of the past couple weeks and our plan:

  • Original diagnosis was of MBC progression in my right hip and left femur.
  • Additional scans ordered to measure the left femur and determine any structural issues that we needed to mindful of.
  • An x-ray and consequential MRI revealed that the “spot” in my femur wasn’t cancer after all.  woot- woot!  GOOD NEWS!!!
  • So, then we were “only” dealing with progression in my right hip – which is quite different because it is limited to just one spot. Similar to my original MBC diagnosis with one spot in my sacrum in 2014.  This is known as oligometastases and opens up the idea of a local treatment option.
  • Soooo, after three consultations we have decided to radiate the hip and stay on my current medication (Arimidex). Then, scan again in 3 months to see if there is more progression.
  • If not – we will stay on my current medication as long as we can… until there is progression.
  • I have a very high quality of life on my current medication and am thrilled to be able to hopefully get more time on it.

I have a radiation planning session on October 24th and will begin radiation on Halloween (spooky…). I will have three rounds, every other day.    The hope is the radiation kills all the cancer cells that have become active and I can get my body back into a state of No Evidence of active Disease.  (NED).   If at my three month scan we find more active cancer than we will look at a systemic change of treatment.

I am at peace with this decision and deeply grateful.

Team Mac together in Maine 10.14.18

This diagnosis awoke in me a fear that I had pushed deep into my soul for nearly 5 years.  It also revealed a deep hope and steadfast commitment to living life over cancer that helped me not lose my laugh or my smile this time around.

I believe people and experiences come into our life for a reason.  The week before my progression news I spent time with my friend Emily who was planning to be our featured storyteller for Hope Scarves’ annual event, Colors of Courage.  Her experience facing leukemia had taken a very discouraging turn and she wasn’t well enough to join us for the event.  So we recorded her message with a video crew.  Being in her presence was an enlightening experience.  She was facing devastating news, she had endured years of toxic treatments and months away from her family in inpatient care hundreds of miles away from home.  All to find out the cancer was still growing and treatments weren’t working.  Yet, here she sat – beaming hope and light.  I mean literally,  this beautiful woman radiates.

Together we talked about life, mortality, children and fashion.  You can read more about our connection in The Voice article published in advance of our event.

So, when news of my progression hit and the weeks of fear followed – I channeled Emily and her light.

At Colors of Courage we honored Emily.   Her story brought deeper meaning to the event and a greater purpose to our gathering.  Following Emily’s lead we laughed, hugged and celebrated life.  And, we passionately spoke about how hope shines brightest in the darkness.   Hope isn’t reserved for those who “beat cancer” or are “cancer free.”  Hope, love and light are there for all of us – no matter the circumstance… if we choose it.  Each day you have a choice to live and love and embrace the day.  Emily showed us this in her glitter hospital gowns and colorful headwraps.  She can’t control what cancer is doing to her body but she can control the way she lives her life – and she gives and receives love more deeply than anyone I know… even as she enters Hospice care.

We shared her video, three of her friends spoke about what it meant to send her a Hope Scarf and what she means to them… and then we turned out the lights in the event space.   In the pitch black darkness,  we asked our guests to donate to RESEARCH… and when they did we asked them to turn on the light on their phone.  We live streamed the program to Emily at home and together lit up the darkness in her honor – a hundred points of light shining in the darkness – representing over $70,000 in donations in under 10 minutes!

The event raised over $180,000 in total – our most successful event yet.  But, success wasn’t just measured in dollars. It is measured in the support we showed Emily, in our shared stories of living life over cancer and creating light in the darkness.

I will carry this light with me always.  And, I am certain I would have experienced this progression differently had Emily not been part of my life.

I spent time with Emily this week in an area she named “the cuddle huddle,” a spot in her living room where a comfy bed has been set up complete with twinkly lights and colorful pillows.   An hour away from a doctor appointment I hoped would confirm my treatment plan, I was nervous.   We talked and laughed and shared stories from the event.  She encouraged me repeatedly.  As we were getting ready to leave she took a small card off her bulletin board.  On it, a mantra she has carried with her since her diagnosis.  As she pressed it into my hand – she looked me in the eyes and said she didn’t need it anymore.  She knew the words by heart.  She was passing it on to me, knowing it would bring me the same strength it did her.

I am safe.  Emily is safe.

Hope, safety and joy are not reserved for those who are “cancer free” or “beating cancer.”  This was something I didn’t understand several years ago.  My happiness hinged on the success of treatments.  Of course we celebrate good news and stable scans.  We raise money for research to accelerate treatment options and help people live longer…  This is what we all hope and pray for…   but, hope isn’t reserved for those who have put cancer behind them.

It shines brightest in the darkness.

Thank you for your support and encouragement.  Thank you for loving us and following my story.   The best is yet to come!

With hope,

Hope begins in the dark

Well, this post isn’t what I hoped to be writing today.

After 4 ½ years of champagne celebrations following clear scans – today we got the news we knew would come eventually.  Progression.

I have a new spot in my left femur and growth on my right hip.  There it is.

In a way we have been preparing for this news for 4 ½ years.  So, it doesn’t knock me down as hard as one might expect.  First, because – the cancer is still limited to my bones (no organ involvement), these spots are not causing me pain and are small.  Second, there are treatment options to try.  There are drugs that were in clinical trials when I was diagnosed metastatic almost 5 years ago that have proven effective in hormone receptive cancer – so we have options.  Also, looking at possibility of radiation.  The fear is that the cancer becomes resistant to hormone therapy.   But, we aren’t jumping to that yet.

I learned this news sipping on green tea in Starbucks – preparing to board a plane to Michigan for the marriage of two high school friends.  I cried some ugly tears with Jay on the phone. I talked with the boys and boarded the plane.

Because, life. 

That’s the whole point.   Isn’t it?  To celebrate, love and live.  We aren’t letting this derail our life.  We are going to take the information as information, make a plan, and treat it. Sitting home and crying doesn’t help anything.  (Certainly not as much as a walk in the northern Michigan woods, laughing about 1993 hairstyles and celebrating love). I feel strong and healthy. This news doesn’t change that.

Talking to the boys was the hardest part.  As I spoke with Bennett I listened to my own words.  I told him this is a new chapter in our story.  It’s ok to cry and be scared.  There will be changes for our family in this chapter – this new medicine might make me tired or sick.  But, this chapter isn’t written yet so worrying about that now doesn’t help anything.  We get to write this chapter just like each chapter of our beautiful adventure leading us to today.  The story hasn’t been all happiness and joy.  But, the narrative is uniquely ours.  And in its entirety is a great story.

If you’d like to do something to support me – join me for Colors of Courage on October 5th.  More than ever, this gathering to support Hope Scarves will be about love, connection, storytelling and hope… These past couple hours as I processed this news I have repeatedly thought about Emily – our featured storyteller for Colors of Courage this year.  Her strength and steadfast grace in the face of debilitating treatments and devastating news lights my way.  Come to hear her story.   And stay to celebrate the power of connection, compassion and hope.  Even in the darkest days.

If you can’t be with us Friday– join us online – bid on the auction – we have a lot of great stuff (big green egg, beats headphones, week at a cottage in lake Michigan and much more).  Or, support or MBC Research Fund.  Our goal is to raise $50,000 for research Friday. Because research is what made this new drug possible for me.  I’ve always said, I am making my body as healthy as possible to hang on for science.   More than ever, I am dedicated to accelerating research and supporting scientists who work to extend patients’ lives.

I’m grateful for the support and encouragement I’ve received over the past 11 years.  And, specifically the past 4 ½ years with MBC.  And, today. One thing is certain, I have never felt alone.  I am carried by your prayers, hugs, light and love.   Thank you.

Loving life, living each day to the fullest.  Even today.

With hope,

Joyfully living

summertime freedom

Our family had the most amazing summer in Michigan.  We all agree, the best yet!  (which is pretty remarkable given some of our adventures.) Wide open days filled with swimming, fishing, boating, climbing sand dunes, spending time with dear family and friends.  10pm dinners.  Barely ever knowing what day it is and certainly not paying attention to what time it is… A summer sabbatical.  How blessed and lucky we are.

As we transition back to reality it’s agonizing to think this precious time is already behind us.  7 weeks seemed like 10 minutes.  Not because we didn’t treasure it… but because we were having so much fun.  You know… time flies.

I focus on gratitude for the moments we shared instead of  tearfully wishing I could be back on my paddle board listening to the laughter of our kids jumping the crashing waves.  I focus on the blessings here: My health is stable.  Our children are happy and healthy. My brother is getting married this weekend to an amazing woman (and we are on our way to Michigan- squeal!) We have a project to pour our hearts and time into in Kentucky, K bar M, a 125-acre farm with a 100+ year old farmhouse to renovate.   Big things are happening at Hope Scarves and I’m eager to spend time with the people involved in our sisterhood of the traveling scarves.

New partnerships – big potential

I’m excited to see what lies around the next corner…

The corner… I’ve lived in fear of looking around it for nearly 5 years. Since I got the metastatic breast cancer diagnosis I have lived terrified of the future.  Over time (and help from a counselor) I learned how to live more fully present instead of worrying about the perceived future.   That’s why transitions are hard. By its very nature, a transition is a time to look ahead, anticipate and plan.  So, I nervously sneak up to the corner and peek around it.   As I set goals and plan for the coming year I have a little less fear then I’ve had in the past. A little less anxiety, confident that we truly are living our best life.   But, I’m cautious not to let my guard down too much.  We never know…. None of us.  But, we peak and we hope.

As you make these transitions in your life – start of school, getting married, changing seasons, changing treatment plans… I hope you too find the balance between living fully present and peaking around the corner.  For some (like my brother and his soon to be wife) this is exhilarating.  Yet,  I know many are burdened by fear and face a scary darkness around the corner.  To you, especially, I am thinking of you. May you find light in your darkness… a treatment that works, a kind doctor, a loving embrace.

This time last year I was in a lot of pain as I trained for the Bourbon Chase 200-mile relay race.  Scared to find out if the pain was progression, I let a stress fracture worsened in my femur.  Eventually getting a diagnosis and hobbling around on crutches for 6 weeks.  Now, a year later, I am more aware of my body and cautious not to push it too hard.  I’ve transitioned to less impact exercise and am learning to accept my body for what it is.  Weaker, sorer & rounder (thank you surgically induced menopause).   But, here.   Here!

I face each day with a unique perspective – the precarious balance of a terminal optimist.  I’ve felt the life I love slipping away.  So, I treasure it more than I ever did before. While many don’t have this perspective,  we can all benefit from finding joy in each day of life. Our oasis in Michigan is life giving.  Truly.   I am working to bring a piece of this to the messy midst of carpool, laundry, doctor appointments and homework.  Here’s what I’m thinking:

  • Relationships – While our surroundings and daily activities are different – the opportunity for connection is the same.   Authentic relationship, laughter, lifting each other up, friendship… life giving even in the midst of chaos.   When everything else falls away – relationships are the heart of the joy.  How empowering it is to be loved and to love.
  • Presence -Take time to be fully present.   Observe little blessings all around us.
  • Gratitude – Acknowledge and appreciate how precious this life is. Even in the midst of deadlines and doctor appointments – this is our one beautiful life to live.

Live it to the fullest.  One day at a time.

cheers,

Founder, Hope Scarves

An angel soars above our farm.

 

We were late and forgot a project. They rolled their eyes for this picture. But, being their mom is my life’s greatest work. Each day is a gift. 

 

Working to bring this joy to every day.