What It's Like to Be a Mouse

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Dear Friends —

Thanks to many of you for checking in over recent weeks to hear how I’m faring now that I’m a mouse. The short story is that I’m in good shape. The slightly longer story is why you’re here, so let’s get to it.

I entered a new clinical trial at UCSF on January 10th; the drug is a form of immunotherapy that’s meant to teach my T cells to sniff out the cancer in my lungs, direct my immune system to do its magic, and ideally not hit unintended targets along the way. This is a Phase 1 trial, which means it’s equal parts exciting and harrowing. Will it work? We have no idea! I’m one of the first non-mice people to get it, and so naturally we’ve called our new drug Minnie.

Apologies to all of you who hold graduate degrees in medicine, chemistry, or consider yourself fluent in the language of science — we’re going to do some simplifying here. Minnie is meant to be dosed at 10 (10 what? Don’t worry about it). But getting to 10 required a stair step approach to acclimate my body to a cruising altitude of 10. First dose was an eyedropper’s amount, then three, then 10. Think of it like a plane taking off out of Denver during a blustery winter; the first four rounds getting to 10 were like flying through all kinds of turbulence. UCSF asked that I be hospitalized for those approaching doses so they could carefully monitor my mouse-ness — a fine idea except that the turbulence usually arrived about four hours after I left the hospital each week.

What you really need to know is that January was a drag. Lots fevers and nausea and a general feeling of “I think I have a weird drug in me.” One day I woke up and I couldn’t use my left hand. What on earth was that about (for those who love the director’s cut version of the story, wonderful Dr S from Scottsdale actually figured it out). Fortunately Minnie relented its clamp on my hand after about eight hours and I was back in the land of typing.

And then in February I found a way to fly at 10 without too much hassle. I pivoted to weekly outpatient visits to UCSF, each Tuesday staring at the magic of Minnie — a clear liquid that dripped into me over the course of an hour — wondering what all of us are wondering: is Minnie working?

This week we got our first looksy.

And now, dear readers, it’s time to talk about scans. Since July of 2019, I’ve had a scan roughly every 90 days. Every three months I enter a room that’s always a marvel to me: a massive CT scanner sits in the middle, and a small crew of technicians hovers about. I hop on a soft plank, say yes when offered a warm blanket, breathe deeply while a nurse accesses my port, stay still while a contrast dye moves through me, and then over about five minutes allow the plank to move me in and out of the scanner while a quiet whoosh of technological miracles takes images of my interior life.

How do you not pray when you’re inside that whoosh? It’s nearly impossible not to. You’d think I’d pray for all the itty bitties in my lung to have disappeared. I’ll admit I do try to do that. But mostly what happens is that I send up prayers of thanks for all of you. This chorus of prayers and supporters is why I’m still here, and privileged enough for another time wrapped up in a warm blanket, surrounded by a technology that just a generation ago was unimaginable.

And that’s it. Someone de-accesses my port, gives me a little bandaid, I hop off the little plank, grab my things, and head off to whatever my day takes me to next.

Then the real drama begins. The Wait. The holding of the impossible fragility that sometime in the next number of hours a new clue about my fate will be revealed. I’ve had scan results delivered in every manner you can imagine. One time I was in line checking out of Trader Joe’s, looked down at my phone, and saw the narrative report of a scan on a push alert. I multi-tasked paying for groceries while scrolling through the news (I don’t recommend this, by the way). Have I gotten results in the middle of a zoom? In fact I have. Have I read a scary result while still appearing to be listening closely to other faces on my computer? Yup.

Back in the day, I would arrange to have an appointment with either my oncologist or surgeon just hours after a scan so I could have a proper conversation in a medical exam room. That always seemed the most civilized way to receive big news, but you’d be surprised how rarely that kind of LET’S HAVE AN EYE TO EYE AND DEEPLY THOUGHTFUL CONVERSATION elegance lines up.

So when your phone rings with a UCSF number at 7:30p on a Monday night, just four hours after a scan, you know the voice on the other end will have some news. Dr K was on the line and she wanted to talk.

She started with the good news — my abdomen remains happily cancer free, and no new mets in my lung.

😀

Then she transitioned to the more complicated news. “Most of the existing mets have increased in size, but modestly.”

😕

“Ok when you say modestly, what are we talking about here,” I asked, using my bravest mouse voice.

“It’s slight. About 5%,” Dr K said.

😐

We then got into a little back and forth speculation dance about this news. I noted that I went about two solid months with no treatment before I got to my cruising altitude of 10, and maybe we should factor that in? Dr K agreed, sure, let’s factor that in.

She then reminded me that often on immunotherapy existing mets will swell up a bit before seeing encouraging results. Smarties call this pseudo-progression. “We could be seeing some pseudo-progression here,” Dr K said.

🤔

“There’s something else, though,” she continued. Dr K then went on to note that the narrative report showed a worrisome area of inflammation in my lung tissue that could be a sign of pneumonitis. “Pneumo-what?” I asked. I then got a little primer on what can only be understood as something possibly terrible — pneumonitis is ridiculously scary, hard to spot, and complicated to treat. If I had it, I would need to break up with Minnie, fast.

😧

What followed was a little back and forth about how I was feeling, which is basically ok. Dr K asked if I was short of breath, coughing, feeling miserable — no to all, I said. She sounded relieved. But we were still a little stumped about whether or not to continue on with Minnie. Were we actually seeing pseudo-progression and was the possible pneumonitis not all that problematic? Or maybe not?

I reached out to my Group of Smarties, one of whom happens to be an excellent lung scan reader. His take was that the worrisome inflammation didn’t look too terrifying, and that I had lots of healthy lung tissue in play. Reassuring.

Then Dr K wrote me and said that the biotech firm that engineered Minnie — Takeda — did a more technical read of the scan and declared it STABLE. Wait, what about the increases? Guess what — measuring a met is kind of like measuring a cloud. Based on the angle and who knows what else, someone’s 5% bigger is someone else’s STABLE.

😎

Hours later I got an updated CEA score, which faithful readers will remember is a test that measures the overall badness of the cancer. Lo and behold, I witnessed a 50% drop. Wow.

Yes it’s still high, but don’t freak out.

I messaged Dr K straight away — oh hey! This new CEA should be an encouragement to move forward with Minnie, yes? Not so fast, Dr K replied. She thinks this number is notoriously unreliable while on immunotherapy.

🥴

With all of that, we had to make a decision. Continue on with Minnie for another eight weeks, or exit and see if another approach might be a better course. This mouse decided to move forward, knowing it’s a bit of a gamble.

I’ve been thinking on this idea of gambling and big decisions in recent days. In all kinds of ways, each decision of our lives is a gamble. Is today the right day to take on a black diamond ski slope? A gamble. Is that new job offer worth the move? Another gamble. What about ordering dessert tonight? A baby gamble I guess.

We all move through our days and relationships gambling this way and that. We do so, a friend reminded me, because gambling inherently comes with some measure of mercy. The unknown about the ski run or a clinical trial invites us to a space of faith, a joyful liberty that frees us from having it all figured out.

We take stock. We make the best decisions we can. We trust. We live.

I’ve named this mysterious space the Brave In-Between. These next eight weeks will be ever more so. May we embrace each of our gambles. May we relish the joy that comes with the uncertainty. May we know that’s the most alive place of all.

😘

xoxo