Live a life well loved.

Writing usually brings me immense joy, but the past couple months – I found it hard to sit down and just do it.  I think that’s because I put the idea of “writing a book” into the universe and suddenly writing became intimidating.  (Isn’t it crazy how that happens?)

I look at it as I do most things in my (hopeful) life.  Does this bring me joy?  If so, yes!  If not, no thank you.   Though some things like laundry and paying bills sneak through.   Today – however, I made myself just sit down and write.  And, it feels good!

Our family spent the last 5 weeks on our summer hiatus in Michigan.  Each year since the boys were babes we have escaped the southern heat to return “home” to Michigan.  This is where I found myself after my MBC diagnosis in 2014 and where I return each year to rejuvenate in body, mind and spirit.  This summer was amazing – every day an adventure of wave jumping, swimming, boating, fishing, running, laughing, & simply being free!!  Usually with 2-5 boys and dear friends & family who share my love of this special place and wild escapades.

On this perfect evening on Lake Michigan, 11 – 71 years of age – all up on skis.

In years past I kept a gratitude journal – writing down the activities of each day so as not to forget the awesomeness (and to help the boys remember how fun I am).   This year, however, I just lived.  I took thousands of pictures to capture the summer – but I didn’t worry about the written documentation.  Though I can barely remember the details of all our fun – it was freeing.

That’s where I am in life, too.  Living fully and intentionally in each day.  Not worrying as much about the documentation – or capturing it for future remembering… just living!   Hoping the moments sink deep into our children’s souls so that these experiences shape them. They shape me.

I am a sunset chaser.  I simply can’t stand not seeing a sunset when we are in Michigan.  I plan each day around the “golden hour” and taking in the magic of the sun sinking into Lake Michigan.  If you haven’t seen a Lake Michigan sunset – you must!  One night I had to swim in the setting sun.  The water was freezing, but the rush of diving into the chilling water is one of my favorite feelings.   I feel so alive as I tingle from head to toe and burst through the surface with a huge gasp… and usually scream.

I also rallied daring women and a couple fearless children to swim with me at midnight as a storm brewed out in the lake.  Though maybe not the safest idea… it was invigorating to dive into the pitch black as the sky lit up with distant lightning.  The white foam of the waves crashing against our pounding hearts.  I held my son’s hand and said “Feel it?  We are so alive!”

I am reminded that loving life is what it’s all about.   Instead of being sad that this chapter is already behind us – I am grateful it happened.  I don’t know what the next chapter holds, but I lived fully in this one.  I am one of the lucky ones.  Daily, I hold friends in my heart who are spending summer getting rods in their legs to strengthen breaking bones, starting new chemo and enduring full brain radiation.   I don’t know when this will be my reality. I don’t know if the cancer is lessoning in my lungs or spreading to other parts of my body. This I know:

There is no greater story than a life well loved. 

However you can – love each moment, love your people, love the opportunities for connection, for learning and to feel alive.

Live a great story-

Go jump in the lake!

outrunning cancer – oh yes we did.

There are moments in an organizations year when it truly lives out its mission.  Outrunning Cancer is one of those weekends for Hope Scarves.

This effort grew from my own personal love of running and wellness.  The idea of gathering people together to take on a marathon while also raising money and awareness for Hope Scarves was a dream come true for this social entrepreneur.  What started with a lofty goal of $10,000 has grown in our 7th year to 107 runners raising over $72,000.  But, the numbers aren’t the story.

There were hundreds of stories running the streets of Louisville.  One of them is of four strong women facing metastatic breast cancer and, how they took on the 1/2 marathon, 13.1 miles of pure determination.

For Carol, outrunning cancer was her 51st 1/2 marathon! Just noodle on that for a moment.  She is also the founder of a group called MET Athletes creating community and support for athletes facing advanced cancer.   When she was diagnosed she looked for others like her who were living well with stage 4 cancer.  They were hard to find… but when she did,  she created a group to help us find each other … over 2 years it has grown to over 20 people.  Members include women with stage 4 breast cancer who completed the 2018 and 2019 Boston Marathons, one who is swimming across lakes to raise awareness and funds, and triathletes. When Carol learned about outrunning cancer she knew it had to be added to her list of 2019 races. She traveled from Cleveland to participate and proudly wore a purple Derby hat to match this year’s outrunning cancer shirt.  I was honored to meet her and thanked her for creating a group that has brought me connection and hope as I too seek to live well with stage 4 breast cancer.

Gretchen, 2.5 years into her MBC diagnosis, destroyed the course with a personal record of 1:53. That’s a smokin’ fast 8:30 minute mile pace.  Talk about outrunning cancer!  Gretchen is a periodontist and loves to travel and spend time with her husband and her sweet fur child, Winnie. When asked why she is outrunning cancer Gretchen shares, “I feel like I am truly OUTrunning the cancer.  It’s not outrunning me! I feel empowered. It also makes me incredibly grateful that my body is able to run. I am proud to be part of the team to support Hope Scarves an amazing organization that raises money for metastatic breast cancer research. It is also a wonderful way to support others that are navigating through their cancer journey.”

The third metastatic breast cancer survivor on the team is Robin.  Robin has run many marathons and long distance endurance races over the years.  She was the honorary team captain for the 2017 Outrunning Cancer team.  A physical therapist by training her body was a machine, churning out the miles.  Until it couldn’t.  Robin’s treatments have weakened her body.  But, her spirit is fierce.   She was out on the course at mile 6 with a harmonica cheering on the runners – knowing exactly what they needed to hear.  When I saw her my legs felt lighter. I know how badly she would love to be out there kicking my slow bootie on the course.  But, instead her dad and sister walked the 13.1 miles in her honor.  She made her way around the course cheering them on and was at the finish line to celebrate their accomplishment.  I have never heard a cross word from Robin.  As she endures harsh chemo, full brain radiation, steroids & pain… her light shines. Always quick with a joke, when her family joined us for the Kick off Open House she introduced me to her sister and her new wig, Paula.   To know Robin is to adore her.  I’m grateful she is part of our team and we’ll cheer each other on – always.

And there was me- the 4th MBC patient.  With about 1 liter of fluid surrounding my left lung I set out to run as much as I could.  Giving myself grace to not worry about the time or the pace. I had no idea how that was going to go… but, it went amazingly well!  I found a slow, comfortable pace and settled in with the steady rhythm of my feet on the pavement and the pounding of my heart.  More than any other year, each step filled me with gratitude.  And, I ran!  Almost all of the 13.1 miles!  Taking breaks to walk at the water stops and when my breathing became too labored, but for the most part… I ran!  Surrounded by my friends- Laura, Angie and Kay.  When we hit mile 11 (the hardest mile in a 1/2 marathon in my opinion) I ran for those who couldn’t – I ran for Emily and Erin, Sandra, Kristen and Mary Ann.  I turned on “It’s always darkest before the dawn” by Florence and the Machine and I ran for all the people living in darkness and fear.  I ran to bring light to my own darkness.

As I made that final left turn to the finish – I felt like I was flying. I put may arms out to each side and soared.  Tears streaming down my face, a felt the strength in my legs, the beating of my heart, the joy in my life.  The gratitude for this moment overcame me and I just starting sprinting… I didn’t want this moment to end. I felt so strong.  So alive.  As I crossed the finish line,  I knew this was just one finish line in a much longer race.

Each of our 107 runners has a story.  We ran for friends, mothers, brothers, sisters, grandmas and friends.  We ran to raise money for metastatic breast cancer research.

And, we laughed and celebrated life!  On Friday, the Hope Scarves studio was bursting with love as we hosted nearly 100 runners and their families for a kickoff Open House.  On Saturday after the race a sea of purple spread out over the charity village as runners reunited at our tent and shared stories.  Hugs and laughter between old and new friends reinforcing our shared commitment to the simple message on each of our shirts “outrunning cancer.”

Outrunning Cancer has become a cornerstone to our year for good reason. This weekend reflects the feeling of our organization – togetherness, love, wellness, laughter and determination.  We carry the energy of this weekend into everything we do, motivated by the 760 donors from 38 states who helped us reach our goal. (thank you if you were one of them!) Inspired by the runners who faced the miles and the stories that drove their determination.

There are miles to go… but on April 27th we outran cancer.

Today, May 7th,  I’m aiming for a different finish line. I can barely get off the couch.  I have a terrible head cold and complete exhaustion driven by the new chemo I’m on.  I haven’t felt this tired in years.   Today’s finish line is making dinner (who am I kidding… ordering dinner) and getting the kids to bed.   Every day we are outliving – outhustling- outloving – outsleeping cancer.  The race just looks a little different.

Thank you to all of our runners, donors, supporters and friends for making outrunning cancer possible.

Keep going!

2019 Honorary Team Captains – Go Hope!

The five F3 teams proudly carried the Hope Scarves flag and an American Flag for 26.2 miles

Churchill Down selfie – See the twin spires?

Our top fundraising team – Leggin it for Lara. Also known as the Plewkas + Anne.

A small portion of our 107 runners!

 

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-