Sixty Days of Summer

When I was a kid, summer meant freedom. No more criticism, no more academic tasks, no more trying to fit in. When summer arrived, shoes came off and the adventures began—exploring the small town nooks and crannies on my bike, rolling around in the grass, playing semi-organized games with the neighborhood pack, reading as much as I wanted to. I just loved summer. Still do.

As the days grow warmer and longer, I feel lighter and happier. A longing for adventure and exploration arises. I want to chase it.

But that’s not how this summer is starting.

My summer began with three days of chemo, followed by a weekend of "rest,” a word that felt deeply ironic, more like end of days, if I’m honest. I tried to do my usual routine: yoga, errands and calls with friends. But I felt depleted and really sad.

On Sunday, I gave in to the sadness. It was hard to rally. I got in my car, one last time, and drove. Where, you might ask? To the car wash! Yup. The car wash. Not sure why I thought I needed a shiny, clean car before giving it up for sixty days, but that’s what I did. And it felt good. It was really satisfying. Like fresh, crisp sheets on a bed just before you head off on vacay knowing you’ll return to the warm embrace of your sweet smelling bed at the end.

My sadness sprung from the realization that I'm losing what I've always thought of as my freedom, the grown-up version of those barefoot summers. From the moment I got my learner's permit, that's what driving meant. No matter what was going on in the house—conflict, pressure, sadness—driving allowed me to escape. It was motion, it was music, it was magic.

In high school, driving—and riding around on my mint green moped—let me exist in a world of fun parties, drive-in movies, kissing boys, throwing frisbees, sunning on the beach, and working shifts at Mickie Ds. I just loved to drive.

The first car I bought, a light blue AMC Gremlin (possibly the worst car ever made) was the source of endless ribbing from my fancy Duke friends. But I didn’t care. It was mine.

After college, I drove that car west, all the way to California. Three thousand long miles, mostly alone, always exhilarated. A trip that felt like flying - through millions of bugs and butterflies, but flying!

And now I can't drive for sixty days.

Instead of chasing summer freedom, June started with a central catheter placed in my cephalic vein followed by an infusion of a tiny bag of supercharged T-cells. My precious T-cells, manipulated by scientists to target and kill myeloma. My nurse tucked us into a private room, away from the infusion clinic commotion. There was a kind of quiet reverence in the space. My T-cells were coming. The moment felt, well, sacred.

Here’s how it works: first, they harvested my lymphocytes through a process called leukapheresis—filtering my blood to pull out the cells that matter. Then they genetically reprogrammed the T-cells to recognize and destroy anything wearing the molecular badge of a myeloma cell. They grew the engineered cells into an colony and froze them. On Monday, they were thawed and concentrated, and my babies came home.

The lab scientist who served them up said I was getting a tiny (50cc) bag because my T-cells were so “robust.” Apparently, not everyone’s cells expand that well in the lab. Some need a bigger volume to reach the right therapeutic dose. Mine? They were efficient, potent, so concentrated they barely filled the bag. I felt a little puffed up. I take compliments where I can get them.

It’s a very promising therapy, but of course, no therapy is risk free. CAR-T risks are real.

Once infused, my reprogrammed T-cells don’t just clock in, do their job, and head home. They explode into action, multiplying, flooding my system, searching for their cancerous targets. Yes, that’s the point, but big-time immune activation can cause serious side effects. High fevers, low blood pressure, brain fog, seizures. The neurotoxicity of CAR-T is rare (8 -10% of patients) but it’s a biggie. It can range from confusion and tremors to more severe symptoms, like Parkinsonism, Bell’s Palsy, even loss of consciousness. Yikes.

So, for sixty days there will be no driving, because my freedom could very suddenly become dangerous. That’s the unsettling part, the unpredictability. My body is responding to something powerful, and even with meticulous planning and oversight, there’s no guarantee it will follow the script.

I went to the barn Sunday evening and walked Reba out to the big arena where she rolled in the sand-based footing, grunting with the pleasure of a back scratch. She reached over the fence to graze a bit on the few remaining green grasses, and generally hung close, like an old friend. I sat down and she gently laid her huge head on my shoulder while I wept, while I gave over to sadness, loss, and fear. And then we were done. I looked into her huge brown eyes and whispered “thank you.” We walked back to her stall and said our goodbyes.

I’m finding my footing. I’m being asked—no, required—to submit. Monday was a bustle of procedures and a bag of IV benadryl, so I didn’t process much. But on Tuesday, I spent the afternoon at ease. I scrolled Substack feed and read this delicious invitation from Jenn Collins. She got me thinking about choice, intentionality. A way I might approach these early summer months—for the joy of it. Or, maybe, as a Gen Z friend might say, “for the plot.”

It occurred to me that living for the joy of it, or for the plot, is the whole point of this life. My obsession with productivity is just a distraction from the real work of living. If I want to live more joyfully, I have to start now, and categorizing this moment as prison is not the way. Living for the joy of it takes courage. And practice.

I want to embrace these sixty days as an invitation I can’t refuse. An invitation to recline, like the women Renoir so loved to paint. To luxuriate in sloth. To read, to write, to putter. I want to play in, not tend, my scruffy little garden, drink lemonade on the deck watching the hummies, speak slowly about inconsequential things with people I love.

Stop pushing. Stop chasing. Let go. Submit to every precious moment.

I’m in. Care to join me?

What’s inviting you this summer?