Amy is a scarf recipient living in Wisconsin. Learn what four words her family would use to describe her and who’s kept her going through Lymphoma treatment.
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 with 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.
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?
It 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.
Quick link –
Take 15 seconds and vote for Hope Scarves for Small Business of the Year – deadline Aug. 18th- http://www.greaterlouisville.com/peopleschoice/
Robin is a Metastatic Breast Cancer patient who heard about Hope Scarves from friends and is now a regular weekly volunteer and one of the most positive and cheerful people you’ll meet. She always has a big bright smile on her face! Read about her fun fact and why “We are the champions!” is her favorite song.
Sipping on green juice 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.