No room for cancer in my carry-on
“There isn’t room for cancer in my carry-on,” I like to say as I rely on travel and adventures with my family and friends to escape the reality of metastatic breast cancer. Over the years, I found a way to literally leave cancer behind and step into the laughter, shared experiences and beautiful sights of far-off places: Hawaii, Belize, Costa Rica, Grand Tetons and many more adventures. Travel became a sacred time for me to connect and make memories with people I love. I hope that the extreme experiences burn a lasting memory into the minds of our children – swimming with sharks, hiking to giant waterfalls, climbing down cliffs to secret beaches, late night star gazing.
The year after my MBC diagnosis, when the boys were 6 and 8, we created the Team Mac Adventure Manifesto, a list of places we would see together. Over the past 7 years we checked off a lot on the list, more than many of my MBC friends have the opportunity to experience. I am grounded in gratitude as I acknowledge my good fortune. First that we have the financial flexibility to continue to travel despite the medical bills. Secondly, the cancer has been stable enough to allow me such amazing experiences. Two important particulars not lost on me for a moment.
The pandemic put a halt to our 2020 plans in the Adventure Manifesto. I felt trapped. To make matters worse, progressing cancer pummeled our family in the midst of an already difficult year. Scans, appointments and procedures to address the fluid around my lungs made it increasingly difficult to breath, both physiologically and emotionally. I found myself out of breath walking up a flight of stairs and unable to exercise in ways that had always been easy.
In March I had surgery to insert a tube into my lungs to drain the fluid. A catheter is tucked under a bandage on my side where I drain fluid every other day. Surgery was harder than I expected, spending 3 days in the hospital, and a slow recovery at home, trying me, emotionally and physically. The tube is painful, uncomfortable and annoying. And, worst of all– my breathing only minimally improved. We hope healing will continue to progress. But, at this point I feel like the tube isn’t worth the pain… or decreased quality of life. I feel weak, broken & compromised. And then there is the bigger issue - the fact that my current treatment isn’t working and we have to find another treatment to slow the growth of this cancer.
So, for this spring break we planned a much less extreme adventure – not knowing what my health or the state of the world would be. Like years past, I tried to convince myself there wasn’t room for cancer in my carry-on. However, I had to make room for the 8 drainage bottles and medical supplies needed to maintain the catheter & pain meds. I cried as I packed… big, ugly sobs.
Then, I reminded myself how lucky we were to be traveling together again. This was still sacred family time. A chance to make memories, talk, try new things, see new places and just be together. As we embarked on our road trip, we did our traditional family cheer – all putting our hands in and saying, “Teeeaaaaam Mac,” heading for the South Carolina coast.
While my heart has been heavy and my abilities compromised I was determined to cherish this time together. On two separate occasions, I found a chance to slip my hand into my boys as we walked. They didn’t pull away. I held back tears as we casually walked hand in hand.
Lots of new experiences were shared: We biked on the beach. We caught redfish in the marsh. We ate dinner on the deck of one of the most beautiful restaurants as the sun set and the golden light shined on our “ordinary, happy family.” We biked for miles under live oak, Spanish moss & palmetto trees. We spotted lots of alligators. We surf fished under a full moon, pulling in whiting after whiting.
We continued family traditions that have shaped Team Mac for years; a long running Eurche game, Jay’s delicious meals including fresh seviche and fish tacos, lots of march madness basketball, big breakfasts, my constant photography and sappy stories of remembering adventures of years gone by.
As I watched young families running around with their eager little kiddos, I couldn’t help remembering all the fun we had with our excited little boys. I’m so glad I mommed so passionately. Building sandcastles, swimming in the ocean, hiking to the top of the mountain, climbing trees, listening to their never-ending stories. I remember how tiring – AND how filled with love each moment we shared was. There still is so much love. It’s just different at 13 and almost 16. But, I am here!
What I cherish is the four of us, together. All of us here. How perfectly we fit together - even as they grow taller than me. Jay and I each have a boy - once in our arms, now towering over us. Team Mac - the four of us. It terrifies me to think of the time when it’s just Jay with a boy on each arm. I think about it every day. What it will be like when I am gone. Gratefully, I know Jay will continue to be a rock for our boys and they will all move forward. It just makes me so, so sad to know how precarious our Team Mac x4 reality it is. They wonder why I am a fierce defender of family time and trips together… I can’t share the deep dark fear that one day it will never be the same.
Today, as we drive north – toward home and the unknown next step with cancer treatment, I keep crying looking out over the smokey mountains. I don’t want this fleeting time together to already be over. We hit traffic and everyone groans in agony… I breath a sigh of relief. Anything to slow down the inevitable end to this trip. Please, more traffic. I will sit in this (stinky) car forever, if it means we all just stay together and I don’t have to talk about my next cancer treatment. I can’t believe this time together is already ending and the scary future is inevitably barreling down on us.
Here’s the thing I remind myself… after you ride a rollercoaster do you talk about how sad you are not to be on the ride? No, you talk about the thrills & excitement. You remember the exhilarating experience. You don’t lament the fact that you aren’t on the ride anymore. You just remember how great it was. That’s how I want to approach this evening, tomorrow and the next day. I don’t want to be sad that this time together is over. I just want to cherish the ride.
And, hold on tight for the next twist and turn of the metastatic breast cancer rollercoaster.
If you too are lucky enough to snag some family time over spring break - I hope you cherish the sacred time.
Carry on - Live life to the fullest!
