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.

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