Everyday Amazing

the 100Jay and I spent the last couple days in Boston to accept an award called The one hundred.   It was an amazing whirlwind of a trip.

First of all, Jay travels every week for his job, so when he is home we intensely focus on family time. Having this time together was great.  He always jokes that I bring him along to take pictures and hold my phone. The truth is I couldn’t do any of this without him.

When we first arrived in Boston we walked to a little deli grocery and picked out delicious items for a picnic.  Sitting in the Public Garden, a young woman wearing a scarf sat down beside us with friends.  I looked at Jay with a smile.  I had to go give her a hug.  After introducing myself I learned she had just come from her last radiation appointment and had several more rounds of chemo for Ewing Sarcoma.  The look in her young eyes was so familiar to me.  We talked about what it’s like to live in this alternative reality of cancer treatment in your 30s.  We hugged as I encouraged her to take it one day at a time. I hope she will request a Hope Scarf. I know exactly which scarf and story to send to her. Jessica’s.

On Wednesday Jay and I started the day with a run through The Public Garden and along Charles River, dodging raindrops.   We recalled some of our favorite runs: exploring Brisbane, Australia, getting lost in Seattle, trail running inAustria and our first visit to Boston when Jay ran the Boston Marathon.  Thankful to be running strong together after all we’ve endured.

We stayed at a great little boutique hotel, The Nine Zero.Who treated us to champagne in our room after learning about the award we were there to receive!  They also had bikes for guests to borrow.  So we decided to bike to MIT for our meeting with the Broad Institute.  Not every day you just bike over to Harvard for a meeting! This visit will have a blog post all it’s own.  But, in a nutshell Corrie, Elana and everyone working on the MBC Project are awesome. It was unbelievable to sit down with them face to face and learn about the Metastatic Breast Cancer Project.  A dynamic new initiative to gather tumor samples, DNA and medical records on metastatic breast cancer patients to speed the development of future therapies.  I wanted to personally thank Corrie for her work and talk specifics about how I can help. I have already shared my DNA and I am excited to play at active role in this meaningful work.  Selfless science – with the potential to transform our understanding of metastatic breast cancer… Hope.

Jay and I topped off our bike ride with a stop at Faneuil Hall for a lobster roll and chowda.    I left The Broad Institute excited and encouraged, but also incredibly overwhelmed with the way we as a species are addressing cancer.  We need more people who think like The Broad Institute– sharing information & working in collaboration with the end goal of helping patients.  Not publishing a paper.    Needless to say, Jay and I had lots to talk about over our pint at the pub.

And, as if THAT wasn’t enough – our day culminated with The one hundred Gala. Celebrating 100 everyday amazing lara & estherpeople changing the way we experience cancer.  This event, put on by Mass General Cancer Center is a celebration like none I have seen.  Cancer is an ugly, awful disease.  But, the one hundred brought together 100 of the most dedicated creative caregivers, researchers, advocates,philanthropists, survivors and more for a beautiful evening celebrating the power of the human spirit to shine brighter than this awful disease.   I was touched to be one of the honorees.  But, even more so, I was honored to have been nominated by one of our scarf recipients from New York.  Esther received a Hope Scarf as a gift from her son’s Spanish teacher two years ago.  This simple gift was a big inspiration to her and she has since shared her story and passed along several scarves to other women through HopeScarves.  She is an Ambassador spreading Hope Scarves in her community and I am thankful to also call her a friend.  We hadn’t met in person until last night at the one hundred!  She drove 7 hours to join us for the gala and it wouldn’t have been the same without her.   We also had the chance to connect with other people doing amazing things – such as Holly and Bree of The Magic Yarn Program in Alaska and a karate program from Southfield Michigan that helps kids find power, peace & purpose through Kids Kicking Cancer.  Dr. Jill Biden opened up the evening with her personal story of cancer and her big dreams for the Moonshot project lead by her husband Vice President Joe Biden.  Each of the stories shared were inspirational.  Tears flowed freely.  I am hopeful new partnerships will emerge for Hope Scarves through connections made at the event.   We are all facing the same beast –with our own creative way of helping.  The human spirit will prevail in the midst of darkness.

Everyday of this trip was amazing.   I feel like it cracked open a new door of possibility for me and for Hope Scarves. I’m excited to continue our efforts to support translational, collaborative research.  Those at the one hundred who got the attention of Dr. Biden or had their projects go viral on social media inspired me.  I want to learn from them to see how Hope Scarves can do the same. We are knocking at the door of possibility.   I’m ready to step out into the world in a big way to share my story, the hope scarves story and support research.  I want to do this in every possible way I can while I am feeling strong.

Moments in life when you take a deep breathe and give thanks.  That’s where I am right now.  Nostalgic this experience is over so quickly.  Excited to see where we go next.

Celebrate hope. Inspire action.  Change how we fight cancer.

Lara

Outrunning Cancer!

Every spring Hope Scarves has a team in the Kentucky Derby miniMarathon & Marathon.  This year we partnered with Twisted Pink to raise even more money and engage runners supporting both organizations!  136 brave souls took to the streets on Saturday in sloppy wet conditions, burun1t that didn’t stop us! We raised $67,279 to support people facing cancer and stage iv breast cancer research!  A quick recap of some of my favorite memories.

  • Dan Bayer’s team was neck and neck with my college friends on the “Go Hope” team for top fundraiser. A highly anticipated bet from last year was renegotiated to bragging rights (thank goodness!) as the two teams agreed- one team. one goal. We announced at the Pasta Dinner that Dan’s team clenched the prize with a grand total of $15,900.  However, the Go Hope! team pushed hard to raise money throughout the run ending up with a grand total of $17,036 as they crossed the finish line. We love this competitive spirit and dedication to supporting Hope Scarves. The support from these friends to raise so much money blows me away.
  • My parents surprised me at the Pasta Dinner by presenting 600 handmade scarves from volunteers in my hometown and the potential of a $12,000 grant to Hope Scarves!   Plus, their team, made up of my mom & dad, Eric, Kristin and Anne Sanders aka “Leggin’ it for Lara” raised $11,150!
  • Race day started with clouds, but soon progressed to a steady downpour.   Yet, runner after runner crossed the finish line with a huge smile.  Despite our soaked clothes, and chattering teeth… our spirits could not be dampened!
  • Our green shirts were everywhere!  Big thanks to Trak Shak and Brooks running for our awesome bright green shirts – we stood out and could spot each other to cheer encouragement!  I heard spectators yell, “Go outrunning cancer!” It was great!
  • Our scream team cheered on the runners with great enthusiasm – rain schmain!  They were just the boost I needed at mile 11!

I completed the 13.1 mile course in just over 2 hours. I always shot to finish “under 2.” But, 2+ was my new goal to allow myself to relax, slow down and enjoy the race… achieved all of the above!  We started the race with about 10 outrunning cancer team mates- which was amazing. Click here to watch a short video of the start. Running this race and feeling the strength in my legs and the determination in my heart is a feeling I can’t quite explain.  I guess when you’ve had health stripped away – you realize how amazing it is to be healthy.  When you teeter precariously between wellness and sickness, you treasure health. Each breath. Each step. Each mile… I am fully aware that many people with stage iv breast cancer are not able to take on a challenge like this.  As mu
ch as they try they can’t live as full of a life as they wish.  The joy in my heart is always tempered by this reality.   I wasn’t just running for just me on Sat.  I was running for all of us.

Asgroup at tent I neared the final turn of the course “Ain’t no mountain high enough” started playing on the loud speaker.  The rain was a total downpour – pelting our faces as we ran.  I slowed down – not out of fatigue, but just to take it all in. Just to mak
e this moment last.   To feel the strength in my body and joy in my heart. The moment when I turned the final corner lined with cheering
fans and saw the finish line I wished so badly I could run up and down that stretch over and over again (but my knees were glad to stop). If those spectators knew how much those final steps meant for me and all women facing metastatic breast cancer.   If they knew how badly I just wanted to be a healthy cancer free survivor who beat cancer… not someone who was due back for an injection the following week and had just had a PET scan days before.

I did it.  I outran cancer.  It didn’t win.  I won.   Today – I outran cancer.  WE outran cancer.

I ran for those who can’t.  For my friends I have lost to this awful disease. I ran so that one day someone with metastatic breast cancer will have better odds at survival. 137 team mates completed this race for sisters, moms, wives, friends, strangers.  We ran to raise money for metastatic breast cancer research and support those facing cancer. 607 people donated to support our efforts!  If you’d like to support outrunning cancer you still can by clicking HERE.

Miles to go… but closer with each step.

We ARE outrunning cancer!

Lara

#outrunningcancer

#runningismymedicine

run2 run3

Stable!

outrunning cancerThe word stable never carried much weight before.  But, today the word stable is a lightning rod of hope.   My PET scan showed stable disease!

Which means the drugs I am on are still working!   HUGE, SIGH OF RELIEF.  This is really great news because the current endocrine therapy I receive has minimal side effects and a very high quality of life.  The fear is eventually their impact will lesson, but we don’t live in the perceived future.  Today – they are working!  Halleluia!

Yet, in my joy and relief I am pained with sadness.  Sadness for a dear friend who died this week- one of the most beautiful, vibrant souls I have had the chance to meet along this journey.   Sadness for several friends whose tests this week revealed progression and now face the scary process of changing treatments…  Sadness for friends whose treatments are working, but cause them so much pain and fatigue that the treatment itself is destroying them.

It’s hard to celebrate when you know the reality. It’s hard to celebrate when friends are crying… and others, dying. But, I know that those friends would encourage me to live in this moment of health and joy.  Live in it fully and embrace it with gratitude.   Because we have seen the sadness and felt the pain, I think we feel the health more deeply.  And, we see the joy more clearly… even in the littlest things.

I’m grateful beyond words for this continued time of health and strength visit homepage.  Next Saturday I will run the Kentucky Derby 1/2 marathon as part of the Hope Scarves Outrunning Cancer team.  Two years ago I wouldn’t have thought this possible.  I’m not sure my hips think it’s possible this year…but I am doing it.  One foot in front of the other for 13.1 miles.  Each mile for a friend battling advanced cancer.  If you would like to show your support please make a donation at www.runsignup.com/lara  Money raised supports the nonprofit I am honored to lead (Hope Scarves) and metastatic breast cancer research.

I am outrunning cancer for:
1- Tia
2- Dawn
3- Brandi
4- Roberta
5- Mary Eleanor
6- Jennie
7- Dianne Marie
8- Catalina
9- Jamie
10- Sherry
11- Marissa
12- Heidi
13 – me & our family

With gratitude and a full heart I will put one foot in front of the other, rain or shine on April 30th thankful for this time of health and stable disease. I will laugh, cry, love and help others.  This time will NOT be wasted.  Each day is a gift.

Time to do something big…
Lara

Facing Life

IMG_8223Before me- the ocean and crashing waves, palm trees, our long dock leading to our picturesque palapa with its thatched roof.   Before me- the unknown of cancer,progression, sickness, fear, loss. Sadness.

This is vacation with stage iv breast cancer.  I say cancer doesn’t come on vacation because in the midst of the snorkeling, fishing and cave tubing – it doesn’t cross my mind.  But in the still of the morning asI watch our kids digging for hermit crabs in the sand in sneaks in.  It clenches my heart.

Yet, it doesn’t have hold. Happiness and hope run deep.  Being with our family and facing days of adventure fuel this hope.  Stoke it like a fire inside me.

Yesterday we kayaked out the reef in front of our villa where we found a shipwreck full of fish and brilliant coral.  The hallowed out hulls of a catamaran arched toward the sunlight as yellow tail and blue tangs darted in and out of the shadows.  Nervous at first our kids clung to the kayaks peering down at the shipwreck. Bennett hugged my neck, his snorkel dangling beside his face and asked if there were skeletons down there.  With a little laugh I assured him there were not. I pictured what was going through his mind, a  skeleton with an orange life vest wedged in the cabin, a  full table setting before him…. He’s seen Goonies about 10 times.  Once we had that settled – the boys were all about it.  Diving down, gazing at the world of life that came from this disaster.  After about 10minutes I told Jay, “I have to swim through it.”  The arch of the hull was about 15 feet down and about 4 feet high.  I tested my breath and my speed and was sure I could do it. This is how I live now – I long to push myself.  To risk. To feel exhilarated.  To show our kids how “adventurous” their mom is!

Diving down and swimming through the dark tunnel I felt strong and daring. I felt alive!  Coming up, gasping for air, full of a sense of accomplishment – this is living!  I encouraged everyone to try it and we did –one by one diving down and racing through as the fish scattered in different directions.  My dad was the last to go through.  Calm and observant he dove down slowly to take in all the fish and coral (unlike the rest of us – who were much quicker in our attempts).  When he came up he looked at us and said, “Did anyone see the shark?” We all laughed at one of Grandpa’s many jokes…. “No, really. There is a shark in the crack of the hull right before the arch.”  Immediately the boys hightailed it back to the kayaks.   We each dove down again to get a better look.  In the dark crack of the hull you could make out the outline of a giant nurse shark – resting inches from the opening to the arch.   I looked directly into his beady eyes.  Laying there in the shadows- a good 6-7 feet.   It wouldn’t hurt us,nurse shark are docile – but it was terrifying to discover.

There it is- life, joy, accomplishment.  And- lurking in the shadows…fear. But, you have to dive down.  Take the risk, live the life, have the adventure.

Because if you don’t all that’s left is fear.

A life wrecked in fear is a life only half lived.

Dive down!

We Dance

Here I am – flying off to a tropical island with a mimosa beside my laptop eager to embark on another family adventure.  (One of the perks of jays frequent travel is the bump to first class and his generosity to give the seat to me!). As with all our travel, there isn’t room for cancer in my carry on.  Cancer is left at home.  On vacation, I am just me. We are just we – a happy family on vacation!

But, last night as I was whipping off a couple quick emails before I unplugged for vacation.  I received an email from the mom of a scarf recipient.  I had sent Jessica a follow up email about our hospital program introducing our new Partnership Coordinator and inquiring if she was still trying to get a program started in her home town.   Her mom informed me Jessica died.

That morning I had rolled up a banner we use for events with bright hopeful faces of scarf recipients. Jessica’s beaming smile at the center of the banner reminded me to drop her a quick email.  I had no idea she had become so sick.  I didn’t know. She died.

Tears streamed down my face as I jammed snorkels, sunscreen and a deflated soccer ball into a bag – writing myself a note not to forget the pump to blow it back up when we landed in the islands.   How can life be so unfair?  Why is it that we can’t stop this awful disease from robbing families of loved ones? How precious and fragile and fleeting is this life?  Damn it cancer.  Damn you! Jessica was a dancer.

Teetering between health and sickness.  I had treatment yesterday… as I waited for my lab results for my xgeva injections the nurses and I talked about spring break.  I quickly changed the subject from my tropical adventure, as I looked around the lab at the tired, sick,worried patients surrounding me. Clearly not going on vacation the next day.   It’s like an entirely separate existence – cancerland.  Where people live treatment to treatment.  Where the side effects and fears dwarf any normal worry like a broken iPhone or flat tire.  Wobbling between these two worlds is bizarre.   I left the cancer center to rush to lunch with friends where the conversation happily swirled from vacations to summer plans and our silly children.  Such simple, happy topics easily taken for granted unless you balance them in comparison to the conversations of minutes before about blood counts, calcium levels and tumor markers….

I’m grateful beyond words for this time of health. Yet, even though cancer doesn’t fit in my carry on, it clings to me. The nagging fear of when it will return threatens my hope.  I run from it through travel. I know.  I feel so alive when doing new things and unplugging from reality.  To just be with our family- making memories I hope beyond hope our kids remember.  But, Jessica, and so many others we’ve lost to cancer, aren’t far from my heart.  Her pain is my pain.  Her hope, my hope.  Anyone who has faces cancer knows this feeling.

Yet, we carry on.  We stumble, get back up and stumble again. And with any luck we dance.