Dear Friends —
The Summer of Slow is inching across its finish line. I know this because I logged some lazy hours this weekend savoring the US Open, especially this match. Four sets of tennis, yes, but also a reminder that a moment of triumph usually comes with a breathtaking backstory: this time the story began with a baby boy born in Maryland to refugee parents who had fled Sierra Leon. Their boy would grow up playing with borrowed rackets at the tennis club where his dad was a maintenance worker, and who would — today — slay a Giant from Spain.
I also know summer is approaching her final bow because a few days back I had a scan, an every 90 day ritual that now tracks along with the seasons of the year. It was time check in on my lazy itty bitties in my lung, and to see if my appendix needed any additional handling after receiving a Niagara Fall’s worth of antibiotics last month.
Overall there’s encouraging news to report. My appendix (I’m still not speaking with her, by the way), managed to heal up quite beautifully. There’s nothing more to do here than chalk up that bizarre twist in this story as simply bonkers. Every good story needs a bonkers tangent, I suppose. I’ve now had mine.
My abdomen continues to be in terrific shape, a miracle for the ages when we all stop and pause — which we absolutely should do — when you consider that this lady came in hot back in July 2019.
So now the lingering mets in my lung. Faithful readers will know we’ve been carefully watching these little guys since February, studying not just their size, but also their pace. Oftentimes, a tumor that begins in the gut will become lazy if it meanders to the lung. And I think we all know that we love lazy.
But lazy doesn’t mean inactive, which means every scan comes with a good amount of back and forth with my terrific oncology team, weighing the pros and cons for when to dust off Foxy from the chemo shelf to show the mets who’s boss. When we weigh all the data, we also pay special attention to how I’m actually feeling. And over the past year, I’ve felt terrific.
A word here on feeling well. Feeling well means waking up refreshed, without a nagging ache of some sort. It means moving through a day with sustained energy. It means saying yes to hikes, and snorkeling off the Kona coast in Hawaii, and climbing hundreds of steps to the top of a medieval chapel to take in the views of Cambridge. It means listening carefully in meetings to colleagues who have a new vantage point to share. It means going to Lucy’s back to school night, racing from class to class for the chance to hear 10 minutes each from some of the most important adults who will shape her year. It means staying after to talk to her AP literature teacher to tell her that she’s marvelous and why on earth aren’t we all reading King Lear this fall.
If you’re part of the Feeling Well club today, take a moment to savor it. Smile, even. Say thank you. There are millions of backstory miracle makers who have made your Feeling Well club membership possible — from engineers who figured out how to make cars safer, to farmers who found a way to harvest healthy food at scale, to chemists who sorted out the magic of antibiotics.
These days, my backstory miracle workers include remarkable oncologists who are helping me manage this mountain trek as a long — and for the most part, healthful — journey. Dr. C and Dr. K are experts in the datasets that make up my patient population, and they’ve also become an expert in me.
This is what we know today. My itty bitties are still lazy, but a smidge less lazy than we’d like. If back in February they were on the couch eating gallons of ice cream and asking their mom to answer the door for the Door Dasher, today they are padding around the house a bit. Folding laundry, even. Are they training for a marathon or something else frightfully scary in my lung? No. But they seem to be getting bored on the couch, and maybe even growing more curious about my lovely respiratory bronchioles and other wonders in my lung.
I’ve known from day one that my adventure here is about managing this trek, rather than crossing a finish line with arms raised in wonder like some patients out there. Some seasons will include mornings waking up feeling delightfully well. And some seasons will require harder work to keep the itty bitties small, and bored once again.
So in recent days I’ve pressed Drs. C and K for their best counsel — get after the itty bitties now with Foxy, or hang tight for another three months? If there were a 1-10 scale here — one being “enjoy your fall, nothing to see here!” and 10 being “yeah, it’s time to hit it, like now,” they were both solid fives. Which is to say, they agreed I could wait if I wanted to, and I’m also in a smart window here to resume some rounds of chemo. “Ultimately this is your decision,” Dr. C said. “There’s not really a ‘right’ answer. There’s only how you would like to proceed. You can start now or in early December.”
I left that exchange with Dr. C actually nostalgic for the doctor who discharged me from Tangent Bonkers and the silly appendicitis adventure. He looked me in the eye and explained exactly how the oral antibiotic would work, down to the fine print of dosing. Twice a day for seven days and that would be that.
Oh the elegance of clarity. All the burden of a hard judgment call is lifted, a liberation to soar inside of the thrill of detailed instructions.
But here on my mountain, at this juncture I get to — have to, really — choose which way next. Oh and did I mention I feel fabulous and really don’t want to let that sweetness go?
So I did what any of us would do in this situation: I summoned all the smartest smarties in my world to help me puzzle through the dilemma of what to do when the oncologists declare a five.
My dear friend Jacquelline listened patiently as I unspooled it all over eggs and a hike this weekend. She asked the best questions, from what we know from the data to wanting to hear more about Dr. K’s body language when he described the slight uptick in itty bitty pace.
“I’m in the middle here,” I said. “Right in between go and pause. There doesn’t seem to be any rush, but I also don’t want to make a reckless decision by waiting another 90 days.”
“Well how about playing to the middle?” Jacquelline offered. “Can you start in October?”
And there it was. Over the world’s best latte, Jacquelline managed to find elegance in the murky middle. I can spend September galloping along on a strong pace, aiming for October for the good work that comes with stepping into the steeper parts of the climb. I messaged Dr. C and she agreed this was a perfectly fine option.
It’s that easy, you might think! You might also be thinking, actually I had the same idea as Jacquelline and maybe I should be an oncologist …
And you’d be right(ish). But still I’ve been torn about it all. I’ve come to discover that cancer includes hundreds of these judgment calls; it’s a quiet duality where privilege and burden each put a hand on the small of your back, whispering thoughts of informed hope and doubtful despair in each ear.
“There’s not really a ‘right’ answer. There’s only how you would like to proceed.” I repeated these Dr. C words to another dear friend, Shirley, imploring her for more discernment.
Through a long and beautifully nuanced phone call, Shirley reminded me that I’m moving through some holy ground here. I’ve been given the gift to co-direct my care, which means my calling is to bring both wisdom and trust, in equal measure.
“Gather the facts, listen well, consider all the elements,” she said. “This is wisdom.” And then we talked about trust.
“We all trust in something,” Shirley said. “Whether your language here is providence, the fates, or God. You’re trusting something higher than yourself with these choices.”
“Yes,” I said. “Let’s use God for my ‘something higher’.”
“Ok then. With wisdom as a guide, trust God with this decision. You do this by not asking for it back.”
For the first time since my scan, Shirley put a new hand on the small of my back — joy. The kind of joy that comes with peace.
Feeling well means waking up physically refreshed, yes. But it also means waking up fully present in the day, with a deep confidence that this day isn’t a mistake, or a decision to be second guessed. Rather this day is the culmination of all the small and big decisions that came before — our breathtaking backstories — that give us imaginations for all that’s to come. Imaginations big enough to slay giants.
And now the middle path awaits. Until then, let’s all relish the sweetness of sharpened pencils, quarterfinals, and Shakespeare that come with these September days.
Savor each one.
xoxo
So good to see you at Back to School Night! Thank you for these updates! You continue to minister to us with your journey. It’s a blessing to be part of your story. Big hugs and bold prayers!
Lyrical and full of inspiration. Thanks, Amy. Love you.