Connection Fuels the Soul

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I had the honor of being named Citizen Laureate 2017 by the Younger Women’s Club of Louisville earlier this week. I’m incredibly touched to be recognized in this way.  But what struck me more than anything during this fun night of bubbles and laughter – was the tireless dedication of Louisville’s non-profit community.

During the program Younger Women’s Club awarded 16 grants totaling $54,000 to community organizations doing incredible work.  As each one accepted their grant and shared specifically how the money would be used I was moved by the common thread of connection and compassion.

From two children connecting over their shared love of oranges at summer camp for kids with cancer to encouraging young refugee women to pursue their entrepreneurial dreams with business support and training.  Making houses more efficient for the elderly or offering compassionate end of life care to people who have no where to live. Realizing you aren’t the only kid with an incarcerated parent, providing a safe haven for victims of domestic violence or delivering meals to elderly. Each of these organizations provides very different services to a wide range of people. The common thread… connection.  Building bridges, showing support and love, finding common ground and just lending a hand to help people face the challenge before them.  No judgement. Just love.

I was both impressed by the hard work of these organizations and saddened that so many problems persist in our community. Reminded that as our family enjoys popsicles by the pool or a dinner out on a whim… not far away is a family who would have lost their home because of an outstanding $123 bill.  Thankfully there is a nonprofit organization in town that came along side them and got them back on their feet.

Connection is what fuels Hope Scarves too.   A scarf is practical.  It makes women feel more beautiful and confident as they face treatments that tear this away.  But, most of all it connects each recipient to another woman who “gets it.” When I connect 1:1 with a newly diagnosed metastatic patient she is simply looking to hear from someone else who is facing this disease and living well.  A connection of hope. Each story in our collection reflect a common theme of people coming alongside a person during treatment.  How they couldn’t have done it alone. Through our shared stories, we find common ground.  And in each connection is strength.

I am grateful for this award.  But, more so, I am grateful for the reminder that connections are fuel for the soul.   So much in the world right now seems to focus on violence, terror and hate.  It’s beautiful to spend an evening celebrating good work and selfless acts of KINDNESS.  May we continue to build bridges and connect. Thank you Louisville Younger Women’s Club and all the grant recipients for being a catalyst to make this so.

How can you make a connection today?

peace & hope,

Lara

Loved connecting with YWC members, including these two- a Hope Scarf recipient and young woman who sent a Hope Scarf to her mom during treatment.

Love our tribe – Hope Scarves volunteers and staff

Michelle, Community Service Chair – my new friend who called me “warm and cuddly” in her remarks.

 

Balancing

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Here I am…

Might seem like a simple enough statement. But, it’s something I’ve been thinking a lot about recently.   Today, our sons finished up 3rd and 6th grade. It was an… amazingly normal school year. No health concerns apart from regular maintenance treatments and the anxiety that accompanies scans. Feelings we’ve come to accept as part of our “normal.” Annoying side effects that cause me a roller coaster of anxiety and discomfort… but I can totally live with. Mostly, we just had experiences like other families not in crisis – soccer games, travels, school projects, first girlfriends, broken glasses, arguing over screen time… It was amazing(ly normal).

And, here I am.   Living life to the fullest… on a plane traveling to Florida for an annual girls trip with my Alabama besties. A trip we’ve taken for over 10 years. One of which I attended with a buzz cut after my hair just started to grow back from chemo. Others I’ve spent crying myself to sleep feeling isolated and alone, with a room full of dear friends just a closed door away. A door I couldn’t open.

Here I am, this year – feeling pretty much “normal.”   I’m grateful. Daily I think about the reality other friends face with this disease. I pause in prayer and send my love to them. Today thinking about a family mourning this weekend as they say goodbye to their daughter taken from them by MBC much too soon. Tears never far behind my gratitude. I think about how I cried behind that closed door never imagining that just a couple years later I would walk with a light skip in my step. Giddy to play and laugh and simply be with friends on the shore of the ocean. What a crazy ride this is.

I was invited to spend this weekend at ASCO in Chicago (the worlds largest oncology conference). A great chance to network with national partners and share Hope Scarves. I considered it, for about 5 minutes. But, decided the beach was where I needed to be.   Often I don’t feel like I am doing enough in the advocacy world. As I try to balance my passion with my life. I want to scream from the rooftops about the injustices in the funding and understanding of metastatic breast cancer research. I tell everyone I know about Hope Scarves and how it can be a resource for someone facing cancer. (Seriously, I told my uber driver on the way to the airport.)   I have so much I want to write about. I want to tell my story and that of so many of my friends to anyone who will listen. My to do list is never ending.

But, today, here I am on a plane to see my friends. Letting it all go…

No matter what you are facing in life, we are all challenged with this pull to do more or different. I spend a good deal of time reading or looking at doing more for my health and wellness. To the extent that sometimes it adds more stress to my life. I should be drinking lemon water each morning when I get up. I shouldn’t eat grilled meat. I should try XYZ supplement or use oils, etc… So many “shoulds.” So many “shouldn’ts.”

Here I am. I try things that bring me joy and let go of things I can’t manage. One day this might be the same thing. (HA!)   I am giving myself a break. And, I am encouraging you to do the same.

Teo Drank, An HIV/AIDS Activist & Yoga teacher explained to me, “remember that one is never balanced, one is always balancing. Balance is not achieved, it’s momentarily held; the losing and regaining balance is the essence of the pose. For children, the joy is in the inevitability of losing their balance, of falling and getting back up. Where adults strive for perfection, children delight in imperfection.”

In this crazy life of living well with metastatic breast cancer – I fall in and out of balance constantly.   I’m sure you can relate in your daily life as well.

Here I am… balancing… learning to delight in my imperfections.

Peace & hope,

Lara

outrunning cancer 2017!

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92 team members

565 donors

37 volunteers

$57,372 dollars raised of our $60,000 goal

Team Captain – Robin!

We kicked off the Outrunning Cancer weekend with our annual team pasta dinner Friday night. In a surprise ceremony we presented the title of Honorary Outrunning Cancer Captain to Robin McNeill.   Robin is a dedicated volunteer who helps in our office each week.  She rarely comes empty handed and always has a with funny story to share. She has run over 20 marathons and is now facing the toughest race of her life – metastatic breast cancer. Even though she can’t currently run – we were able to present her with the very first medal of the 2017 Kentucky Derby Festival marathon.  We honored our dear friend with stories from one of her long-time running friends, Hope Scarves and touching words from her parents. Tears all around. Together we promised each step would be for her and the thousands of others facing cancer. It brought this whole effort into perspective.

And, when I was struggling at mile 7… I thought of Robin. I heard her laughing and telling me a silly story. I thought how lucky I was to be running and feeling the pain and fatigue of running… instead of cancer treatment. Today, I was outrunning cancer.

My run wasn’t easy. After a 1½ hour rain delay we were so eager to start that our first 6 miles were much faster than my training pace. So, as runners say, I “blew up” around mile 7. I just didn’t have any energy. I couldn’t keep up with my running buddies and I slowly slipped behind the other neon shirts.

We did it! Laura, Gretchen and I… see how they are still literally holding me up. 

My friend Gretchen looked back with encouraging eyes as she nearly floated down the course. Like me, Gretchen also has metastatic breast cancer. I know the race carried the same significance for her as it does for me. A day when we are stronger than cancer. A day we push our bodies as we did when we were “healthy.”  A day we win.  Three days later Gretchen would have a scan to see how the cancer in her lungs is responding to treatment. But, on this day – her lungs were pounding with determination and strength.   She amazes me.

As we ran through Churchill Downs and made our way back towards the city I could feel my legs getting heavier. My energy was zapped.   My high school best friend Laura, who travels from Michigan each year, slowed her pace to stay with me. I was dragging.

I needed energy. I started high-fiving the spectators on the side of the road. I thanked a police officer directing traffic. I laughed at the goofy signs. “You’re running better than our federal government” “Run? I thought you said Rum” “Dig deeper than a kid looking for boogers…” I went out of my way to high five kids sitting on the curb. With each connection I felt a little pep in my step.  It wasn’t that the miles became shorter but each step was a little easier after I made these connections. I could feel the energy from these interactions and their encouragement. Had I not slowed down I would have ran right past all these people.

Connections.

This is really what it’s all about. This is what we are about at Hope Scarves. When you connect and share in a common experience you share your burden. The smile and cheers I received with each high five lightened my load– it was positive energy that I felt right down to my aching quads.   This is the same for cancer patients. When we send a scarf and story we share our strength and encouragement. It doesn’t change the chemo side effects but this connection brings a little extra energy as they face the day. Each time they put their Hope Scarf on I hope they feel us cheering from the sidelines – encouraging them to take it one step at a time. We’d hold up signs like, “bald is beautiful” “you can do it” and “@#$% cancer” several of that last one.

I’m so thankful to have completed the 13.1 mile run, but more than that I am grateful for the connections that exist because of Hope Scarves. I’m honored Robin spends her Tuesdays with us and that we could honor her as our team captain. I love that Gretchen kicked my butt on the course and that she could feel this victory over cancer. I’m grateful that week after week people reach out to Hope Scarves for connection and support.

These personal connections are the true victory in the race of outrunning cancer. 

Thank you to each of you who ran this race with us. I hope you felt this same sense of inspiration and connection. Thank you if you are one of our 565 donors who believe in our work and support us through your donation.

We are 95.6% toward our goal of $60,000. If you’d like to help us cross the finish line – please click here to make a donation.

Each donation supports our efforts to create connection by sharing scarves, stories and hope with people facing cancer and invest in metastatic breast cancer research.

Our connections are deeply rooted in our shared story.  

Sometimes we just need to slow down to realize how much each connection brings to our life.

We are outrunning cancer!

celebrating but not satisfied…

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Thumbs up for my pal, NED.

Monday I had a PET scan that showed stable disease. No evidence of disease (NED)!   Which means the current treatments I am on are working and we will stay the course. 3½ years since my MBC diagnosis. Nearly 10 years after cancer first invaded our family as stage 2 breast cancer. This is the best possible news for someone with metastatic breast cancer (MBC) and I am relieved.   Grateful beyond words.

Yet, as I wait for the wave of relief to wash away my anxiety… it doesn’t come. Hundreds of likes and messages from friends and family exploding with joy and my heart still feels like it is breaking. Why???

Because this disease is so unfair. I have lost more friends than I can count on my hands in the past couple weeks. Many diagnosed after me and for which this time of stability didn’t exist.

The stress of the past couple days leading up to this scan sticks with me. The fear of bad news crushing the happiness of our family, striking another blow in the joy we have cautiously come to accept. The harsh reality that I have watched too many friends die of cancer recently. As I celebrate I can’t stop thinking of all the friends facing this same disease with devastating side effects, endless doctor appointments and how hard they are still trying to parent and create normal, happy lives for their children. How at any moment this could be me… My realization of how fragile my health is… And, there is the simple fact that my back and joints hurt. I was pretty certain this pain was a sign of new cancer. Knowing it isn’t is a huge relief but it doesn’t actually make the pain go away.

I want to be doing everything I can to help people, like me, with MBC.  Right now it just seems like we aren’t making much progress and I’m not doing enough.  My good news is reassuring – but until more people can get this same news I am not satisfied.

We had a wonderful spring break last week – enjoying time together in the Florida keys- lots of fishing, swimming, snorkeling, boating and simple family fun.   It doesn’t get a whole lot better than having your almost 12 year old quietly grab for your hand as you walk along the water or your 9 year old wanting you to put on a mask and snorkel and play together in the pool. These are precious moments I am grateful for. I took hundreds of pictures and videos as my kids nagged me to stop… if only they knew how each snap of my camera is my way of preserving time.  Capturing this moment of joy and health.  Holding it in my hand, proof that it happened.

Life is beautiful – and we are living it! Fully, completely, gratefully.

So, why am I not more joyful for the good news of my scan? Why is the anxiety hanging on? Is it guilt that so many I love are struggling with harder treatments and devastating news? The fear of the perceived future when I too will be sick… The recent deaths of friends whose lives were stolen by cancer… Is it the frustration that I’m not doing enough to accelerate research.  I want a national stage – I want to speak to 1,000s.  I want to be on the Today Show and tell everyone about Hope Scarves and why we need more emphasis on MBC Research.  Am I holding on tightly to the laughter of this past week, sad that these experiences are so quickly memories? Is it the anger I feel that millions of dollars are spent on breast cancer awareness instead of research to save peoples lives… like mine? Is it the fact that my hormones are that of an 80-year-old woman and I’m a nut case? A little bit of all of this…

My reality with MBC is a constant roller coaster on a ride I didn’t realize existed. Before my MBC diagnosis I was lead to believe everyone “beat breast cancer.” I celebrated survivors just like the rest of the world – not giving much thought that there were 113 people every day not celebrating… but DYING. Now that I’m on this ride these are my friends. I know their faces, their names and their stories and I’m mad as hell that we can’t save their lives.  That’s why we started the MBC Research fund at Hope Scarves and why I am working tirelessly to create a national collaborative effort of other like minded organizations to invest in meaningful research… more on this soon and my quest to move the needle on research.

All of Bennett’s life we’ve faced cancer. It brings me joy to celebrate together! And, yes, he knows how to pop champagne…

So, we popped champagne with echoing laughter and I quietly cried. On the same day – filled with joy and gratitude, fear and worry. The delicate balance I have come to accept in the real world of breast cancer.

Writing helps me process my feelings. In a way, it is a prayer. Its how I share my worries with God and the universe.  It helps me understand myself and reflect on our story. It allows me reach out to others with these struggles and by sharing, hopefully others can relate and reflect on their experiences too. Perhaps our shared experiences will help us find common ground and connect. May my friends in really hard places know how much I care for them. How much I admire their perseverance and determination. I hope my words will also one-day help our children understand the journey we are on. Our words live on forever. Thank you for reading and caring about me.  It brings me comfort to know I am surrounded by so many who love and celebrate and cry together as we face cancer.

A combination of love and fear. Both whole and broken – living my hopeful life.

 

 

 

 

Sisterhood of the traveling scarves

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Our scarves are all gone!

We regularly host days at area hospitals where we share Hope Scarves directly with patients there for treatment. Yesterday was one of those days. Amy, Director of Hope Scarves, and I spent the morning at Norton Cancer Institute. It was exhilarating and exhausting, sad and happy, frustrating and encouraging. We met 25 women – each with their own unique story. We laughed and cried together as we shared our common bond – the audacity of hope.

Let me share a couple with you… (names changed to protect their privacy).

Sara is 78 years old, wheeling herself in on her own in a wheelchair. Didn’t even want my help opening the door. As we spoke, she tugged on her green scarf and told me “this is one of those Hope Scarves. It’s my favorite.” I gave her another and a big hug.

A beautifully classy woman sat nervously strumming her bracelets as her family and grown children waited for her name to be called. I asked if I could sit with them and introduced myself and Hope Scarves. She told me that after 12 years she had just been diagnosed with metastatic breast cancer. In her 70’s she has a very high quality of life and was struggling with the idea of toxic treatments. We talked about living life over cancer one day at a time and doing things that bring you joy. I shared a Hope Scarf with her and hoped it would live up to her clearly high fashion taste. We hugged and I gave her and her family my email address to keep in touch if she had questions as they make treatment decisions. They gave me a $40 donation and asked what they could do to share the program in their community.   When I saw her an hour later – she was beaming after a positive conversation with the doctor on treatment options and side effects. We hugged as she stepped into the elevator and I said a silent prayer that she may hold onto that joy.

I talked with a cancer survivor who is BRCA+ (the gene that triggers breast cancer) about sharing her story. As she sat nervously in the waiting room she explained that her 20-year-old daughter was with the doctor and had just found out she too is BRCA+. We talked for ½ an hour about living life one day at a time and grounding yourself in hope.

A nurse excitedly called me up to the desk to tell me one of their patients was there today to return her Hope Scarf. When I met Myrna she hugged me and thanked me for the scarf.   Through her pancreatic cancer treatments one of the hardest parts was loosing her hair. She told me how much the Hope Scarf helped ease this sadness. In her story she writes, “I wore this scarf as a symbol of hope and my defiance against cancer.” I can’t wait to send it on to someone else who needs to hear Myrna’s story. This is Myrna – she was glad to share her name and this great picture when we met.

Denise’s body was weak from countless rounds of chemo for incurable kidney cancer, but her spirit shined in her smile. She told be she had two things yet to do: be a grandma and see her daughter get married. She showed me a picture of her new grandson and then shared the exciting news that her daughter just got engaged. We talked about the wedding and made plans for her to come in to Hope Scarves to pick out a wedding scarf once she had her mother of the bride dress.   As her weary body rested in her wheelchair she and her husband talked about how strong their love has become through this experience. His eyes filled with tears. She held his hand.

I sat with Melissa for nearly an hour as she rested in the infusion chair. She told me about her diagnosis, a mis-diagnosis & her family. The sound of The Price is Right in the background. The last time I watched that show was in my own infusion chair in 2008.  I closed my eyes and remembered what it was like to lay in that chair. And pushed back the fear of when I will be back there. I gave her a Hope Scarf. She didn’t really like it – too dull. So we tried again and found a bright yellow scarf that brought her to tears. She read its story, written by a woman from Grand Haven, MI out loud to me.  I thought about all that has happened to bring me to this point. We hugged and I slipped out the door…

in tears.

I don’t really want to spend one more minute in a doctor office than I have to. But, the people we meet through Hope Scarves are worth it.   I am humbled by how much it means to each person when we give her a scarf. When she opens up her package and reads the story, magic happens. And I hope that they each feel the same love and support I did way back when as I wore Kelly’s scarves.

This is the audacity of hope. Each of these women are facing different challenges. A whole room full of patients on a beautiful spring day. Struggles, tears, fears seeping from the stuffy waiting room.  So much sadness, so much joy.

And the sisterhood of the traveling scarves binding us together – lifting each other up, finding common ground and strength in our stories and our shared scarves.

always hope.