The Gauntlet

And Graduates

Dear Friends —

Four years ago this week many of you received an email from me with some terrible news: I had been diagnosed with Stage IV colon cancer. At the time I was too young to be screened (this has changed — please, all you spry 45 year olds out there book an appointment to get screened, and if you need some delightful encouragement enjoy this message made just for you by Ryan Reynolds and Rob McElhenney).

I barely had any symptoms, so the news arrived with a mix of shock and fear and unbearable grief. A quick Google revealed that five-year survival rates for Stage IV folks was a mere 14%.

That first night in the hospital I understood that I would join millions of others — lovely souls who also received terrible news on July 1, 2019 — to climb a hard and mighty mountain of adversity. And like all others summoned, it was an invitation I loathed, but one I had no choice to decline. The mountain was now part of my story, so it was time to lace up my boots. It was also time to find as many trail maps, experts, and hands to hold as I made my ascent, step by step.

Within hours of my diagnosis a battalion of skilled angels arrived to bring their unique gifts for the climb: oncologists, surgeons, and nurses appeared within minutes. Family and friends were only a few seconds behind them. And then this broader chorus of love — friends from decades ago, professional colleagues, neighbors, new acquaintances, fellow patients, and a tapestry of new voices who had important and timely wisdom — emerged, and stayed. Prayer and generous well-wishes have been constants.

At the time Connor was 16 and Lucy was 14. I remember that first night in the hospital praying hot tears of lament that I might live to see Lucy graduate from high school. Not quite five years, but close. I’d defy the odds, and anything after that would be pure bonus.

Since then, many of you have kept track of my story through these postcard blog posts: nine rounds of chemo, a successful abdominal surgery to remove all the cancer in my colon and liver, the setback which revealed itty bitty mets in my lung, radiation rounds, and another 25 cycles of chemo spread out over four years.

In all the drudgery, the story of my mountain has revealed a mysterious mix of wonder, awe, lousy stretches, heartbreak, and breathtaking beauty. Remarkably, the good days — and by good, I mean “today I actually feel quite fine” — have far outnumbered the awful.

And still, the uncertainty about the mets in my lung has been a persistent reminder there is no elegant gondola I can climb on to say my farewells to this mountain. I was cautioned from the first day I set out from base camp that mine is not a cancer that can be “cured,” rather the goal is to live as long, and as well, as possible. My invitation is to simply keep climbing, pause to gaze out the view, beckon others to come and see, live fully in the peaceful respites, and summon as much courage for the steep switchbacks as possible.

For the past four years, this has been my story.

Then in March, many will remember the story turned. A distressing scan revealed the itty bitty mets in my lung were increasing in size, despite the chemo I was receiving. I quickly moved into a clinical trial, one centered on immunotherapy rather than chemotherapy. Results from Phase I indicated some intriguing promise.

When I entered the trial (my location is in Scottsdale), I was warned that when the immunotherapy drugs became active in my system the first patients on the trial reported two common hardships: the thyroid gland more or less goes haywire, and prepare for fireworks in the gut.

Ok good to know, I remember thinking. “Any idea on when to expect potential unpleasantness?”

“Hard to say,” my trial team said. “This isn’t like chemo. Some patients don’t experience much, some are hit hard within hours of receiving treatment. Some don’t experience any hardships until weeks later. But remember only a few hundred patients have received these drugs so we’re still learning. You’ll be one who teaches us.”

I do remember the trial coordinator noting — lightly — that these kinds of side effects can be hints that the drug would be doing its job in my lung. So I left my appointments strangely wanting to experience some adverse effects, but maybe just enough to not interrupt my life.

It was a busy spring — trips to Vancouver, LA, Tucson, Washington, and frequent swoops to Scottsdale. And as we rounded into May, Lucy’s high school graduation and final dance recital season arrived, a sweet answer to prayer I savored each morning I woke up, feeling, well, just fine.

This all changed on May 17. I was flying from DC to Phoenix when a wave of fatigue and chills more or less paralyzed me in my seat. I vaguely remember it was hard to open my eyes when we landed, and had to ask for help getting my bag out of the overhead compartment. I walked like a zombie through the terminal, freezing. I made it outside to wait for my sister-in-law, Julie, to pick me up bundled up in a blanket when all around around me I noticed how odd I must have looked to the good people of Arizona wearing shorts and t-shirts.

“Ok I think this is my thyroid,” I remember telling Julie. “Either that or some kind of space alien has invaded me.”

The next morning my trial physicians confirmed that my thyroid was massively out of whack — easily treatable but it would take a few weeks to get back to equilibrium.

Cost of doing business, I thought. All good.

Later that night, a new horror show arrived. The “fireworks” I was warned about that could happen in my gut ignited.

This is a family blog, so I’m going to spare us all the grim details. But that space alien I wondered about in the car from the airport to my brother’s house decided to move into my intestinal lining and wreaked a kind of havoc I didn’t even know was biologically possible.

Over the following days, I was treated with multiple infusions to calm things down. I flew home with the assurance that soon enough life would return to some semblance of normal, just in time for Lucy’s graduation.

Unfortunately, normal didn’t arrive. Instead, whatever was happening in my gut was growing increasingly worse. It became harder to eat, much less retain anything I was eating.

As we celebrated Lucy’s graduation alongside thousands of other families, I beamed with pride, all the while growing increasingly aware that whatever was happening to me was rapidly moving from incredibly distressing to incredibly scary.

Who knew just 48 hours later I’d be in an ER? Buy yay to Lucy!

I had gone four days without eating, and walking became difficult. A visit to the ER at Stanford confirmed what I already knew: get back to Scottsdale where they can sort out a way to treat you that’s in line with your trial.

Within hours of graduation goodness I was admitted to Shea Hospital in Scottsdale where my labs revealed an alarming set of findings: I was down to near zero in the nutrient department, skating far too close to the edge on most measures.

Over the next nine days, my trial team worked closely with the hospital team to find something — anything — that would calm my now enraged gut. All the while, I was continuously hooked up to a bag of nutrients to replenish all that had vanished in the days before.

I more or less went underground. If you reached out with a friendly hello in June and you didn’t get a prompt reply, know that I was “running the gauntlet,” as one of my physicians remarked.

People, this mountain has at times been a dumpster fire of awful. But nothing — not chemo or surgeries or any of it — could come close to the physical and emotional horror of recent weeks. Who knew the steepest part of the mountain might arrive without much warning?

I’m now home, and on the mend. Progress is incremental, and not always linear. My gut was so inflamed that I’ve been warned that most of this summer I’m going to feel more or less like a fragile flower, slowly getting my footing back. I’ve become reacquainted with my favorite foods from when I was a toddler, sleeping like a boss, and surrendering to truth that mountains require all kinds of courage — especially the sections that summon you to unmarked trails.

But here’s something I’m discovering. That courage comes with a magical gift — with each tenuous step I take on unfamiliar or unmarked terrain, I know I’m leaving the earliest contours of a new trail for patients to come after me. This trial is keeping track of everything, and all of it will be scrutinized so that future patients may not have to run a gauntlet as arduous as mine. Maybe in just a few years, patients will have less gauntlet and more predictable pathways, or at least be better prepared for the harder switchbacks.

In the weeks ahead I’ll have scan to show us how the drugs are faring with the itty bitties. A new chapter of the story may emerge.

Until then, please know how grateful I am for the outpouring of support from those of you who knew I was in the thick of it. Also know that I’m all set in the “have you tried eating this or that?” department. Each day is its own mini adventure of inching back toward health, and I’m slowly finding my way.

We’re all finding our way. No matter if we’re on the mend, celebrating the sweetness of summer, carrying maps forged by brave souls before us, or creating new ones for those who are just now lacing up their boots.

Celebrate each step. Stay hydrated. Savor the view. And don’t forget to give thanks for all the graduates in your life. They’ve done something remarkable, and you were there to tell them how proud you are of their accomplishments.

xoxo