Outrunning Cancer

I’ve come to refer to our life as a rollercoaster. Because we live such drastic ups and downs determined to have fun and laugh along the way.  A quick recap:

December 2018 Fluid suspected in CT scan around my lungs – couldn’t be found when attempted to drain it… a miraculous holiday followed filled with love and laughter following this “Christmas miracle.”

February 2019 Fluid showed up again in scans – this time drained 1 liter, but came back with no evidence of cancer… another happy dance.

March 2019 Fluid back – drained over a liter again, Tests this time confirmed malignancy. Started an oral chemo. Hoping it will take care of fluid… and hold me stable for a good long while.  Traveled to Costa Rica and lived in the jungle for a week – no room for cancer in our luggage.

Then, just days back to reality from our amazing adventure a scan in April showed the fluid around my lung is still there, but we are hopeful the chemo will start to knock out the cancer cells and eventually the fluid will absorb back into my body… This waiting is hard. The wondering is agonizing… running is exhausting.

But, I am determined to not let this sideline me from participating in our annual OUTRUNNING CANCER race this Saturday, April 27th.

Each year Hope Scarves teams up with Kentucky Derby Festival marathon to host OUTRUNNING CANCER –  a chance for runners from around the country to raise money and pound the pavement for Hope Scarves and MBC Research. I ran each of the last 5 years.  And, I am not sitting this one out!

Our goal is 100 runners and $55,000 to support Hope Scarves and our metastatic breast cancer research fund. As of today – with 5 days to go – we have 105 runners and have raised $41,293.

My goal is to raise $100 for each mile I run/walk. That’s $1310. Please consider making a donation to support me in this race.

No donation too big or too small!

I know each step I take is bigger than just me. I run/walk for friends facing cancer and those we’ve lost. I plan to wear names on my shirt and  carry their story with me each step. If you’d like me to run for you or someone you love please donate and send me a message to hello@hopescarvs.org and I will add them.

Running has always been therapy to me. An escape into the woods, the beating of my heart a reminder of how alive and strong I am. A midnight race through bourbon country when all I hear is the pounding of my feet on a country road. When I run I feel free. This race is about proving to ourselves and each other we are stronger together. As a team we are a powerful force in the fight against cancer. And, this year it’s about giving myself grace. To accept where I am in life – the fluid around my lung doesn’t allow me to run like I used to.  So this year I will be walking most of the race… But no less determined. Slow but still moving forward. However you get to the finish line… it begins with one step.  And, then another.  A lot like facing metastatic breast cancer.  You just put one foot in front of the other…

I would be honored to have your help to reach my goal of $1,310 by April 27th. Every donation – no matter how big or small – is greatly appreciated.

We have miles to go… but closer with each step. We are Outrunning Cancer.

Thank you for your support!

A breath without cancer…

In the latest twist and turn on the MBC roller coaster, the fluid drained from my lung came back with NO SIGN OF CANCER.  (that’s right, no sign of cancer).

I shared an emotional update on social media the afternoon we received this information.  And again, the next day I reflected on my feelings at my favorite stop on my trail run.  I hadn’t yet processed it in writing… until today.

While we still don’t know what caused the fluid we breathe a collective sigh of relief to know it wasn’t filled with cancer cells.   And, now we wait to see if it fills up again.  At which point we will drain it again and test for a variety of other causes such as infection, pulmonary disease, immune disease, etc… and of course, cancer. Again.

The emotional toil this kind of waiting, wondering and worrying brings is hard to put into words.  Almost every breath I take is a twinge of fear.  Because, we still don’t know exactly what is going on… and that’s hard.

Over the past 5 years I have worked hard to not live in the perceived future or let the unknown control me. I work hard to let this disease steal moments or days – I gratefully accept this good news, tuck it away and get back to living.   I have to ride this MBC roller coaster – there isn’t any getting off. It’s not a fun ride.  But, this is the only life I get.  So, I need to savor the good news and make the most of each twist and turn –  Living each day as fully and gratefully as possible.

That doesn’t mean denying my sadness or fear.  I leave space for these feelings, but I work each day to not stay in this dark place. Instead, I seek joy.  A smoothie with a friend, a sleepover at our farm, taking the cutest red head I know on a mother/son date in a limo and just being grateful for the every day moments too.

Each day is a gift. Each breath is a gift.

Live it! Breathe.

 

 

hope is true.

As many of you know, my cancer ride has been particularly bumpy these past couple months. In October I experienced progression in my hip – which we treated with radiation.  Then, in December a scan showed progression in the lining of my lung.  But when we went in to draw out a diagnostic sample of the fluid… it was gone.  (The reaction to which I shared in this emotional live facebook post.) Oh my, what a day that was! I left the hospital high-fiving everyone I passed. Hundreds of you celebrated with us. (thank you!) We were enveloped with peace and had a glorious holiday.  Spending 10 days at our farm (our first Christmas there) welcoming family & friends from Michigan, traveling to Chicago to celebrate my parents 50th wedding anniversary.  Each toast and hug made more special in the context of our shared gratitude. Often, I just looked around and silently breathed, “thank you.”

The plan was to give it 6 weeks and scan again to see if the fluid was truly gone . Wednesday was scan day … UGH…  Over the past 5 years living with metastatic breast cancer I learned to ride these waves of paranoia.  Some days not giving it a second thought – others, more recently, each inhale a worrisome wonder.  For someone who uses breathing as a healing act of grounding myself … the idea of cancer in my breath was unsettling.

As a result, I was pretty down and I couldn’t quite articulate it.  Until one day on a trail run it hit me.  Literally stopped me in my muddy tracks. I had fallen victim to the “possiblity of progression.”   I was living in the hope that… The hope that the cancer was stable.  The hope that I didn’t have cancer in my lungs.  The hope that my medicine was working… Somehow hope had become contingent.

We have to live in hope.  Not in the hope that

On Tuesday I emailed myself this reminder.  So that if I got bad news I would remember:

Hope is true.  It isn’t contingent on something happening.  It is believing in something bigger than ourselves, when we can’t see it and trusting.  Believing we are safe even when we feel threatened.  Arriving at a place of trust and surrender.

I needed the reminder.

The CT scan showed more fluid than in December.  So, yesterday I went back to the hospital for a thoracentesis to drain a diagnostic sample from my left lung.  As I clutched the pillow and leaned over the table I closed my eyes and remembered the joy of the last time I was there.  I buried my head in the pillow and cried.  This time they found fluid. A lot.

They drained 3/4 liter of fluid from my lung.  I was floored as I watched the yellow liquid squirt into the jar.  How did I not feel this?  I had run 3 miles the day before… The docs said this was probably due to the fact that I am healthy and my body just made up for it.

After a long day and some ugly tears, I was finally home around 6pm and took it easy on the couch studying the Civil War with Wills.   The boys were great putting themselves to bed and didn’t seem phased by the fact I didn’t get off the couch (maybe I should try that more often).

When I was getting ready for bed I passed out in the bathroom.  Luckily I felt it coming on and laid down.  I yelled for the boys to wake up and had them call our friend Charlotte, a doctor who lives nearby.  I was dehydrated from not eating or drinking all day while I waited for the procedure.  And,  I was in a good bit of pain.   A little gatorade and TLC and I was feeling better before long.  I hated having to call the kids to help me – but they were champs.   Charlotte stayed with me until Jay’s flight landed from Minneapolis around 1am.  I was sound asleep.

It has been an overwhelming couple days. Grateful for a community of friends who drove me to the hospital, sat with me, made me laugh, drove our kids where they needed to be, brought dinner and helped me up off the bathroom floor.  You can’t face cancer alone.

I am in much less pain today as I take it easy at home. The fluid was sent for diagnosis. We’ll know more in a couple days.  And, we’ll make a plan.

I have been incredibly fortunate to have five years of stability on my first line drug (Arimidex).  When I was first diagnosed I sank into a dark depression.  I’m grateful I climbed out of the darkness and embraced these past 5 years.   When I was first diagnosed I would never have imagined there could be so much joy – the strength of my body running marathons & all night relay races, mountains climbed, waterfalls to swim in, cheering our boys to victories, new friendships, marriages, cliff side champagne toasts, swimming with sharks and dancing all night.

Hope is true.  It isn’t contingent on something happening.  It is believing in something bigger than ourselves, when we can’t see it and trusting.  Believing we are safe even when we feel threatened.  Arriving at a place of trust and surrender.

Thank you for loving us and your prayers.  I will update when we have more details.

hope & peace-

The MBC cloak

Take a deep breath.  Breath in and out.  Close your eyes. Repeat.

This is a simple exercise I do often each day to ground myself.  Right now, it’s hard…   I am fearful that the lining of my lungs is filling with cancerous fluid (as suspected in a recent scan) and as a result – I can’t take a deep breath.  My back hurts terribly.  When I went in for an acupuncture treatment I pointed to the spot that hurts.  “Oh, the stress highway…” was the immediate comment from my practitioner.   And, he went to work. The relief was almost immediate… but then the pain returned.  My oncologist listened to my lungs- they are clear.  I ran three miles last weekend with ease.  I don’t think my lungs are “actually” filling with fluid.  I think I’m paranoid.  I hate it.

Meanwhile, women I love face crushing difficulty and death as they try to live life over cancer.

In 2016 I had the incredible honor of attending a yoga & horseback riding retreat in Montana.  Our group of 9 included two women with metastatic breast cancer, Jennie and I (bottom left).  The rest were surviving an early stage diagnosis.  Since these 4 magical days in the mountains two more of our small group progressed to metastatic breast cancer.   Last week Kristen died (She is in the center, wearing a white dress).  For her, this disease was cruel and fast.  This was our last message from her:

Hi, Cowgirls! I just wanted to let you all know that I have been transferred to hospice care. I am okay. My family and I are ready. I’ve had a pretty quick decline since September and carboplatin and taxotere did not work at all. My body is also not tolerating treatment. I’ve had a good life and it is time. I love you all! Yeehaw and Namaste!

Kristen

Erin, whose active lifestyle and deep faith radiated hope and kindness was also diagnosed with MBC.  After our retreat, she and her husband took off in a jeep on an adventure together before returning home to her family. I remember thinking she had her priorities straight. She had limitless energy and compassion for others.  Today, she has endured endless chemos, scans, radiation and fatigue as her cancer torments her strong body.  Through it she continues to exercise, produce youth theater and share her steadfast faith with others.   It crushes me to watch her go through all this.  I find constant inspiration from her joy, faith and determination.

Erin and her family.

Though not with us in Montana I am also closely following the health of another Erin – who, like me, calls Michigan home.  She can’t take a deep breath right now either.  But, not because she is paranoid like me…. She found out last week that her cancer has conclusively spread to her lungs (in addition to her liver and bones).  They drained a liter of fluid while in the hospital this past week, which came back almost immediately.  After days in the hospital she is finally home with a catheter in place to maintain drainage from her lungs, breathing with the help of the oxygen tank she is now hooked up to.  She is 37 years old.  She has three sons under 9 years old.

Erin and her family

So, when my caring friends lean in for a hug and ask how I am doing… I say “I’m doing ok.” Because, my goodness – I am still riding the grateful train after my Christmas miracle.  Because I’m not in a hospital or hooked up to oxygen or fatigued to the point of exhaustion from chemo.   I am living.

But, my heart is breaking for my friends.  And, the angst in my heart is more than I can bare at times.  We do all the regular things – soccer & basketball games, laundry, new year’s resolutions to eat better, Christmas gift returns.  We laugh and make spring break plans and monitor our kids screen time (in vain).

Through it all – I feel like a wear an invisible cloak.  The MBC cloak. Sometimes it is heavy and burdensome.  Other times – it is lighter. Sometimes our whole family is under it like a grungy tarp that sections us off from the rest of the world.   And, at times I bundle it up and stuff it in my backpack, taking off on a glorious adventure.

It is always there.

Today, it is heavy and wet with tears.

I am destroyed by the endless list of friends I have lost to MBC with no apparent end in sight.  I am worried for my friends who aren’t doing well.

As I sit here writing, sipping my green tea on a rainy, dreary day I feel the pain in my back lessoning a little.  I had to get this out.  I had to honor these beautiful friends and name the anger, fear, sadness in my heart.

And, I have to counter the worries –  this awful disease, the government shutdown, the homeless man I drove by on my way to this cozy coffee shop.  I have to turn heartbreak into hope.  So, I’ll pack up my computer and head over to the Hope Scarves studio where volunteers will greet me with hugs and cheerful good mornings and we’ll send hundreds of scarves and stories to people facing cancer.  For a moment these scarf recipients will feel lifted out of their sadness.  We’ll help carry their cloak.

And, we will raise money for metastatic breast cancer RESEARCH.  While only a drop in a huge ocean needed to accelerate treatments to extend lives and save lives, I can’t sit by and watch friends suffer or die and not do SOMETHING.

My MBC cloak is made of all the stories of those who have faced cancer before me.  It is made of my fears and anxiety.  My hopes and dreams.   It is dark and dirty, bright and colorful – all at the same time.  There are words woven through the fabric and the words are my story.

Thank you for helping lighten the burden of this cloak by reading these words today.

 

Just breathe.

Founder, Hope Scarves

 

Ways you too can help –

Donate to Hope Scarves Research Fund

Share your story facing cancer

Donate scarves

Coming soon… join the Outrunning Cancer team to run the KY Derby Festival marathon.

 

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