Damn it.

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This week I reconnected with two friends I hadn’t spoken with in years. Friends who faced cancer around the same time as me in 2007, 2008. We had helped each other through chemo & reconstruction in our early 30’s. And celebrated milestones as we lived beyond cancer
 As our lives moved on and cancer was behind us we lost touch a bit.

Now, we reconnected. Because, cancer came back for each of them- stage iv metastatic breast cancer. Damn it.

As we spoke, they each had the same questions – How do you live life with such joy? How do you stay healthy in the face of this disease?

Deep breathe.

I encouraged them to take it one day at a time. To not live in the perceived future, but to focus on the day before them. With tears in my eyes, I quoted my dear friend Mary Ann,

“If you had 5 minutes to live, would you spend one second being sad?”

Mary Ann was a shining bright light of hope, an inspiration to me each day. She is an example of how to live life over cancer.   She died.    I told them that too. No reason to hide the facts.

The reality of this disease is you live each day with joy and gratitude
 and the knowledge that this disease kills 111 people every day. Every single day.

The reality is my friend Colleen who on October 27 posted “I had CT scans of my chest, abdomen, and pelvis and a bone scan. I am thrilled to report it all came back stable! I will stay on my current chemotherapy and resume tomorrow.”

Then, on November 3rd she wrote that she was entering Hospice. Because the 7 brain mets she was also in aggressive treatment for were not responding. There is nothing more the doctors can do. She has two young girls.

How do you help friends enter this reality
 it’s such a damn roller coaster. On one hand I tell them they can still live a full, joyful life. That treatments might not be that bad
 that they might have a long durable response, as I have. That we hold on for science.  Research is leading to new treatment options… lots of reasons to be hopeful.  But, the reality is we don’t know how to stop it.  I don’t know how long my good health will last
 I don’t know when cancer will progress and I will change treatments
 when the ground will fall out from under me. Because, the reality is, It will.5-minutes

I am so angry at cancer. It steals hopes and dreams and laughter. It robs children of moms and dads. It denies young people the chance to grow old


In my frustration I fall back on Mary Ann. She didn’t know how long she had to live well. How long she had with her three children on this earth. But she knew the time she had was going to be beautiful.

 

That’s what I know too. Damn it.

 

Living in the light… not the darkness,

Lara

 

Living life over metastatic breast cancer

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belize-itI was diagnosed with breast cancer in 2007 at the age of 30, seven months pregnant with our second son. Our world came crashing down–yet through it all, we were focused on hope. Our doctors, friends and family–everyone–believed we would “beat” cancer. And, we did.

I was the poster child for beating cancer. Literally–I was on a poster for a local cancer organization. I ran marathons, climbed mountains, raised our kids with joy and confidence that cancer was behind us. I turned this scary time in my life into something positive to help others by starting a nonprofit organization called Hope Scarves. We collect scarves and survivor stories and pass them on to others in treatment. Since our founding in 2012, we have sent more than 6,000 scarves to people facing over 90 types of cancer in every state and 12 countries. Our oldest recipient is 92 and our youngest, 5. By sharing our stories, we find common ground and process what has happened. We pass along our strength to others.

Yet, in those first years, Hope Scarves was just like so many other cancer organizations blindly telling the “happy side” of cancer. We were focused on survivorship. At a YSC conference in New Orleans, a mother donated a scarf and story in memory of her daughter who had died of breast cancer. I kindly took the story and hugged this shaking mom. But, I tucked that story away, thinking, “We are hope scarves. Not sorry-for-your-loss scarves.” I didn’t want to share sad stories.

How short sighted of me.

In 2014, I developed pain in my low back, which I assumed was from trail running. But, an MRI revealed every cancer survivor’s worst nightmare. Metastatic breast cancer. Cancer had spread to my bones. After seven glorious years, our family was thrust back into the world of cancer. Only this time it wasn’t hopeful. My husband and I have always been the type of people who make a plan and execute. We get things done. But, there wasn’t a clear path. We were devastated to learn my treatment plans would be to “wait and see.” “We will start with this drug and see how long it holds the cancer in check. But, it will progress and then we will try a different treatment. There are many drugs to try, but eventually we will run out of options
“

Confusion. Disbelief.

After all the pinkness–the races, the walks, the soup cans and our society doing just about every possible thing you can imagine “for a cure”
this is the best you’ve got? I was floored. Angry, depressed, numb. How could this be? I fell into a dark depression. I would be responsible for the single most devastating thing my young kids would experience–watching their mom get sick and die. How could this be happening? This diagnosis was nothing like my stage II diagnosis,when people came out of the woodwork to encourage me and share their success stories. This diagnosis was isolating. Terrifying.

Then, I met Mary Ann. She also had MBC, but her laughter and smile didn’t show it. Mary Ann grabbed both my hands, looked me in the eye and said, “If you had five minutes to live, would you spend a second being sad?” She helped me see hope isn’t just found in medical breakthroughs and good scans. It’s found in a hug, laughter and simple moments of living life over cancer. Mary Ann helped me live again.

Mary Ann died this year.

As I watched friend after friend progress with this disease, I found organizations and people who were working to change the landscape of metastatic breast cancer. I also learned that people in the metastatic community felt so disappointed and left behind by the “pink machine” that they created their own ribbon–it’s teal and purple with a little pink. They created new names like metavivor, forever fighter, lifer. They are defining what it means to live with stage IV cancer.

I am so thankful for their work and the growing movement to bring metastatic breast cancer to the forefront, but more than anything I am upset. The most sick, afraid and hurting of all breast cancer patients felt so alienated by the movement set out to help them that they created their own ribbon. They condemn the pink ribbon. How did an effort set out to “cure breast cancer” become so short sighted?

And, I was one of them. I was naively focused on survivorship and beating cancer at Hope Scarves–sharing happy stories of people who kicked cancer and went on to live happy, healthy lives.

So, starting with my own organization, I made changes. We stopped saying words like “beat cancer” and instead, we say, “face cancer.” We don’t collect survivor stories at some magical point when you move from a patient to a survivor. No, you can share your words of encouragement and hope at any point. From the moment cancer touches your life, you are surviving. You have a story to tell.

It’s not about living life after cancer. It’s about living life over cancer.

But, more than anything it comes down to research. We expanded Hope Scarves’ mission to invest in metastatic breast cancer research. And, to date, we have committed $150,000. Think of the impact we could make if EVERY breast cancer organization dedicated a portion to metastatic breast cancer research. How quickly the depressing 3% given to research would increase. Could we accelerate the pace of discovery to change treatment plans from waiting for the cancer to grow to stopping it? Could we extend lives? Could we save lives?

What if, instead of metastatic patients feeling alienated, they become the VERY CORE of the pink movement? The deepest,

Dianne is the face of breast cancer. Mother of two young boys. Daily whole brain radiation

 most vibrant pink of all. Early stage survivors would celebrate their health and then DEMAND more money for metastatic research. Because the reality is, once cancer impacts you, the chance of reoccurrence is 30%. It doesn’t matter what stage you were originally diagnosed or how long time passes. But, if research can find a way to make this a chronic disease instead of a DEADLY disease–every one of us in pink is better off.

We, as a breast cancer community, HAVE TO BE the driving force to make this happen. We can’t just celebrate the happy stories. We must tell the WHOLE STORY.

My goal is simple–I want metastatic patients to be the core of the breast cancer movement. For each of us to feel supported through more research dollars, encouraged by early stage survivors, understood and not forgotten.

Raise your voice. Demand more money for metastatic breast cancer research. Reach out to someone facing stage IV breast cancer.

Together, we can ALL live life over cancer.

Here are some ways you can help right now:

Here goes…

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I woke up early this morning to write.  My heart and head have been spinning… that’s when I know I need to get my feelings on paper (or computer, but that just didn’t sound as eloquent…)

We had an amazing, laughter & adventure filled summer.  A blessing not lost for one second on me.  Kicked off the fun boys jumpwith a camping trip in the Grand Tetons & Yellowstone – completely unplugged from work, cancer, technology.  Nothing but the great outdoors, team Mac, Jay’s gourmet campfire food, fishing, hiking, sleeping under the stars.  I can’t imagine how it could have been any better.  Then, we established our summer residence in Michigan – traveling to see family and friends from the UP to Detroit area. Our home for the month of July was a charming yellow cottage called “sunkist” tucked in the Lake Michigan dunes.  A place I find overwhelming peace and comfort.  It was in this place that I found myself 3 summers ago after the stage iv breast cancer diagnosis.  A place I regained my laughter, balance, strength and hope for the future.  I can’t quite explain in words how amazing it is to have a place like this.  Where you can wake up each day to the sun creeping in through the pines, hear birds chirp, waves crash and just let the day unfold.  No plans, no rush, no reason to worry (except when your car won’t start because pesky woodland creatures have eaten your wires… but even that didn’t ruffle me too much!) I savor the unplugging. For most of the year our lives are rushed.  Practices, homework, commitments, work travel, hurried meals, hustle, bustle… all good. Thankful for a demanding school that pushes our kids, thankful our boys are healthy and want to play on two soccer teams, thankful we have so many great friends and fun things to do.  Thankful this little idea called Hope Scarves has grown into a full time job… Balancing all this with the nagging stress of cancer is hard.  Exhausting.

lara sail

I need a time to just let it all go.   That is summer. I am so thankful to the Hope Scarves staff who “hold down the hope” in the office while I am away. Every week Hope Scarves are shipped around the country to encourage those facing cancer. With trusted staff and volunteers managing the day to day, I can work from Michigan on partnerships, fundraising, public relations- all from the comfort of a front porch or overlooking Lake Charlevoix. It’s such a blessing. We climb dunes, swim, sail, fish, eat pizza on the beach, build tree forts, kayak in the sunset, trail run, swim at midnight, hunt for crayfish, stargaze, pick blueberries, sit by candle light late into the night telling stories and laughing with friends and family. One of my favorite parts is simply tucking our sandy boys into their colorful twin beds in the room they share and reading together. Curtains flapping in the evening breeze, crickets chirping, recounting the fun of the day and our hopes for the next day.

The hardest part about the end of summer is acknowledging this time has passed. This chapter in our story is complete. I think this transition has been better than years past because I have had this long stretch of good health which has strengthen my mantra – one day at a time. But, it’s still rough. I focus on the day before me and live it to the fullest. Not wishfully looking back at a time I can’t get back, not living in fear of the perceived future. Yet, the reality is I don’t know if I will have another summer like this one. I don’t know how this year will unfold, what this next chapter holds for us. Not many with stage iv breast cancer have the luxury of such good health. This gnaws at me – especially upon my return home. How did I get so “lucky?” Why has my cancer not spread? How do I get to live an almost normal life while my friends are paralyzed with fatigue, nausea, sadness & so much more?

yellowstoneIt begs the bigger questions of how do we choose to spend our time. Right now I am running around like a crazy person, 2 steps behind – inventorying uniform shorts and 3 ring binders, uploading obligatory school forms, behind on returning about 100 emails and three overdue deadlines blinking at me on my calendar
. re-entry is hard. Yet, I am incredibly thankful that these are my worries. I have a friend in the hospital right now – after a summer of progression and heartache she is now facing an infection, so weak from chemo that her young teenage children could lift her. Once strong and stunningly beautiful – she would give anything to be running around to practices and organizing school supplies. The life she knew has been ripped away from her by cancer. Yet, she fights on. Strong and stunningly beautiful deep to her core. The reality of how fragile all this is, it’s breathtaking. Suffocating.

So, how do we find balance and peace in the face of disease? In the face of schedules & responsibilities? I look into our children’s eyes and say, I love you. I hug a friend I haven’t seen in months and laugh. I slow down and find comfort in the moment before me. I let go of worry and expectations and just lay it out there
 I carry the people I love with me each day. I keep those facing uncertainty and heartache especially close to my heart. The friends I lost this summer. The families I know starting school without their mom. The women so weak and scared that they can’t be the moms they want to be. For whom the school supply list would be a welcome read over pathology reports and scheduling car pools much preferred over MRI appointments and second opinions.   These people are the real inspirations.

Now, we start this new chapter, Fall 2016: 6th & 3rd grade, small business of the year, potential interview on the Today Show, Colors of Courage on October 7th, a possible office move, my 40th birthday


I balance these feelings – gratitude for the summer, sadness that its over, anxiety that this window of good health will end, anger that so many people are sick and dying from cancer, wishful that I was still a stage 2 cancer survivor, motivated to use my time as best I can to help others, determined to not get overwhelmed with stupid stuff like laundry. Hopeful. In the day, in the moment before me. Before us all.

 

Here goes


Lara

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Quick link –

Take 15 seconds and vote for Hope Scarves for Small Business of the Year – deadline Aug. 18th- http://www.greaterlouisville.com/peopleschoice/

Hold yourself, and others, sacred

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Sipping on green jScreen Shot 2016-07-15 at 11.40.33 AMuice after a yoga class and wanted to take a couple minutes to send a quick update.  In the midst of a lot of sadness around the world & friends facing cancer… I am pausing in a moment of gratitude.  It’s hard, when you know this peace and joy isn’t available to others.  It makes me appreciate peace, safety & health deeply.

Our family has been on an amazing summer adventure.  We camped beneath the magnificent Grand Tetons – rafting, kayaking, fishing, hiking.  We explored Yellowstone -taking in the beauty of the wild – animals, geysers, mountains, valleys and streams.  Day in and day out we laughed in shared excitement for the adventures before us.  Jay and I were just as excited about the way each day unfolded as our sons.  Giddy with happiness.  Tears of joy as we pulled out of our campsite the last time.
Then, we headed to Michigan – where we remain detached from the busy world.  Daily decisions hinge on choices such as climbing dunes or paddle boarding?  fishing or sailing?  No plans, no schedule – each day brings simple joys of just being together.   Tucking the boys into their colorful beds in our cottage, exhausted.  Reading together and listening to the waves.  This is what I want them to remember.   Us. Together.  happy.

Last Friday we had an exciting development with Hope Scarves when a national media outlet called interested in doing a story.   We flipped out with excitement.  But, I couldn’t believe it was going to steal away this precious time.  I would have to go to New York, back to Louisville and not only do the interview, but also prepare with our staff and volunteers for the exciting “aftermath” of a national story.  My goal – since starting Hope Scarves- has always been to be on the Today Show.  But, I couldn’t sacrifice this sacred time with our family.  As much as I wanted to tell the Hope Scarves story, it had to wait.  I kindly asked if they would hold off for a month… ( I still can’t believe that I did this!!!)  They said YES!!  So, stay tuned for an exciting announcement about this coming soon.

In the meantime, I am back to living life with full joy, intention and thanks.   Running in the trails around duck lake, sunset swimming, time with family & friends.  Three years ago, I found myself in Michigan.  After 9 months of fear, sadness and pain facing stage this iv diagnosis.  I found my laugh and peace on the shores of Lake Michigan.  And, I return each year to reflect, relax and soak up the sunshine and lake air. I swim in Lake Michigan every day (even when its frigid cold).  Diving into a crashing wave is one of the most freeing feelings on earth.

As you face today – think about your priorities.  What brings you peace?  How do find childlike joy?  We can’t all jump in waves or run down sand dunes… but we can simplify our days, ground ourselves in the moment right before us.  The hatred in the world is staggering.  Share love.  Be present – with your kids, your friends.  yourself.   This world is a crazy, scary place.  take pause in the peace you can make around you.  Extend a loving, compassionate hand to a friend.  Smile at a stranger.

hold yourself and others sacred.  life is beautiful.
Lara

Houston… We have a problem.

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virtuous circleLiving with metastatic breast cancer is overwhelming.  Watching friends suffer & die of this disease is heart wrenching.  Being a part of an effort that has the potential to change the way we approach metastatic breast cancer research
 finally, an overwhelming sense of purpose.

This week I had the extreme honor of joining forces with like-minded organizations in Houston to talk about how to accelerate research for metastatic breast cancer.   I sat in tears as I listened to Dr. Matthew Ellis of Baylor College of Medicine talk about his vision of a “Virtuous Cycle” of care that links together patients, clinicians and researchers to bring more options to those facing metastatic breast cancer.

“You want to know why we haven’t seen progress in metastatic breast cancer survival?” Dr. Ellis asked.   I leaned to the edge of my seat
. “I think we haven’t gotten a cure yet because we haven’t studied the patients enough. Something is wrong with the system.  The patients are over here.  The researchers are over here and I’m in the middle screaming for help.”

Tears started screaming down my face.   We have to reset the system.  Start with the study of the patients themselves.  How many are there?  What are their stories?

Super smart scientists are working behind closed doors – examining cells, proteins, genes.  They have theories and ideas.  Some work, some don’t
 But what does any of that matter if it doesn’t help a patient?  Why do scientific advances matter if we don’t know how to use them to help people?  We have to shake up the system by creating a shared cycle of cooperation.  Connect the genomic data to the lab, the lab to the clinic and record the story of the patient to understand how she or he is doing.

We need to put the patient at the very center of the effort. And doctors, researchers & patients have to share successes and failures to learn from each other.  Put egos aside.  Stop working in isolation of each other.

There is a reason we haven’t found a cure to breast cancer. The system is broken.  I’m excited to be a part of resetting it.  It is a huge, daunting task. But, lives are on the line. Mine included.  And, I just sat around a table in Houston with 8 people who believe it can be done.

In 1970 a group of people sat around a table in Houston. An explosion had occurred aboard the Apollo 13 spaceship and a mission of lunar exploration quickly became a mission of survival. Ground control in Houston scrambled to develop an emergency plan as millions around the world watched and the lives of three astronauts hung in the balance. Ground Control in Houston faced a formidable task. They had to create an entirely new plan to bring these three astronauts home safely.

They locked the door, determined to rethink the challenge until they brought these astronauts home.  They tore things apart and rebuilt a spaceship.  They saved these astronaut’s lives.

Approximately 40,000 people die each year of metastatic breast cancer. 110 a day.  We have been walking, running, purchasing pink stuff, raising millions of dollars to cure breast cancer.  But, it isn’t working.   Our mothers, sisters, wives, friends and men are dying.

It’s time for a radical change in how we face this disease.  Time to lock the door and tear things apart.

Fittingly, Vice President Joe Biden recently established the National Cancer Moonshot Initiative to support cutting-edge research.

Are the stars aligning for change?   Can we really change the way we face cancer?  Can we work together on innovations to accelerate the understanding and treatment of breast cancer? Bring people together, break down silos, share data & generate new ideas and breakthroughs?

In October, leaders in the areas of genomics, biological research, clinical trials & common data will gather in Houston for the Metastatic Breast Cancer Conference at Baylor College of Medicine. Hope Scarves is honored to work In partnership with MBC Alliance, Metastatic Breast Cancer Network, Baylor College of Medicine, Twisted Pink & Theresa’s Research Foundation to challenge these researchers to create fundable, impactful research collaborations with a focus on metastatic breast cancer patients. The projects must have national reach and international application.

Stay tuned for more information on this new approach to metastatic breast cancer research and how you can support me & Hope Scarves be a catalyst in this new frontier.  I’m honored to have a seat at the table and will do everything I can to be the change I wish to see in this world.

He who is not courageous enough to take risks will accomplish nothing in life. – Muhammed Ali