In defense of boring.

An exciting story.

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Boring doesn’t spew acid out of a hole in its stomach, or randomly cough up blood one otherwise average morning, or announce that it’s considering suicide. Boring doesn’t need a trip to the ER at 3 a.m. or a tube coming out of its trachea to breathe. Boring doesn’t pass out in the bathroom, or wake itself up six times a night gasping for air, or wake you up before dawn with the ominous words “Can you come look at something?”

“You’re boring,” declares Dr. Sacco, Jake’s oncologist. It’s Wednesday and she’s palpating Jake’s neck during his routine appointment before he’s infused with petosemtamab, the clinical-trial drug that’s keeping him alive. By “boring,” Dr. Sacco means that Jake appears unchanged from his last visit, his labs are okay, his tumors haven’t grown, and he’s not likely to have to immediately switch clinical trials.¹ He’s suffered so many random maladies, from feeding tubes popping out, to a surprise indolent infection, to fungal infections, to skin problems.

Dr. Sacco’s hand movements are practiced and perfunctory (most of the scene can be, it appears, described with “p” words). She sounds pleased—she uses the same tone of moderate excitement you’d use to declare someone the winner of $15, or maybe the recipient of a B+ on a term paper; it’s the voice a person receiving the “most improved” ribbon hears. Subdued and happy, but not thrilled. Boring is a gift, but things could be better than boring, couldn’t they? Like if Jake were one of the rare cases of “complete response” from petosemtamab monotherapy. He’s not, so Dr. Sacco has to maintain some composure. “Boring” isn’t a miraculous remission. Also, boring shouldn’t know how exciting it really is, so that you don’t scare it off.

After all “boring” is the cousin of “quiet” and so, according to medical superstition, easily scared off. I work in the ER, where quiet—a mostly empty waiting room, or an extended period when no one’s bleeding or screaming or cursing—is a precarious state, threatened by simply remarking on the quiet. You never say “quiet,” just like you don’t say “Macbeth” in a theater² or “it’s probably fine” when you’re missing the final screw for a piece of IKEA furniture.

Don’t whisper “quiet”. Don’t call it the q-word. Try not to think it. Every ER doc knows what happens when you do, as surely as we know that we’re going to be calling psych consults on a full moon.³ Mentioning quiet, in ER lore, means that the critical patients arrive all at once—some physically critical, some merely socially critical: unhappy and judgmental and sucking all the air from the room so even the patients requiring supplemental oxygen get short of breath—and, as the hordes descend, half the nursing staff gets food poisoning and goes home. Every ER doctor is a scientist first, but, after a decade on the job, we develop amulets and rituals for the full moons and snowstorms, and the … not-loud nights … I shouldn’t even write it, I’ll destroy the shift of every ER doc in a five-mile radius. They’ll know it was me. We can be vindictive.

Cancer does something similar, making you do all sorts of crazy things you don’t really believe, but you do them anyway. I think that’s why so many people have unsupported beliefs about cancer and nutrition. Eat fruit! No, eat protein! Avoid wheat and sugar! Try these berries! Be careful of cell phone signals! Simply writing about cancer on the internet has invited an enormous amount of dubious advice into the comments section.

Cancer also makes you bring the same purple Yeti water bottle to the infusion center, and tap the sparkly vinyl sticker next to the nursing station that says “You Can Totally Do This!” three times like a greeting whenever you walk past, behind Jake, on the way to the room where he gets petosemtamab, and maybe you’ve even decided on a lucky hoodie, the soft blue one with the deep pockets, because it’s the one you wore the last time Jake got good news.⁴ These little tics aren’t yet obsessive, but they feel compulsory and soothing. Here’s the water bottle, the sticker, the hoodie. Here are the familiar, reliable things when nothing feels familiar or reliable.

On a night when you can’t keep up with the onslaught of patients, or when the person you love is dying, you cling to the little rituals because, otherwise, you cling to your dying patient or your dying husband so hard you accidentally leave nail marks on their arms—as if you could hold on to their bodies tightly enough to keep them here, as if people don’t slip out of their skin like a snake shedding, every day. There’s no holding tightly enough. Not for doctors. Not for wives. So what, then, if we hold onto a few superstitions instead?

“What do you think?” Dr. Sacco asks me, pointing to the tumor on the left side of Jake’s neck. Jake doesn’t seem to mind being a medical curio. He’s patient with residents and med students. He also tolerates these collegial, often jargon-heavy huddles between myself and his doctors. I go through my last two weeks of mental images like a flipbook animation. That particular tumor is my barometer. It blooms just beneath the surface of Jake’s skin, so its progress can be monitored in a way the deeper tumors resist, despite attempts using a portable ultrasound machine I bought off eBay.

The tumor erupted a few months after the total glossectomy that took his entire tongue. We thought the total glossectomy took the whole cancer with. It did not. Cancer cells had probably already hitched a ride on the nerves in Jake’s neck, evading detection at the surgical margins.⁵

I watch the tumor protruding from the left side of Jake’s neck in the same way I watch Jake breathing while he sleeps. Watching it won’t prevent growth, like I know, intellectually, watching Jake won’t keep him breathing. But if he stops breathing, I want to do something. There are things I can do. If his tumor grows, I can’t cure it, but I can at least recognize that he needs to switch clinical trials before we wait for scans to tell us, because by then, it might be too late; it might already have been too late by the time I saw the first strange spot on Jake’s tongue, the spot that turned out to be his cancer. I missed something once before. I won’t—I can’t—let that happen again.

Every two months, Jake gets CT scans to closely monitor his response to the petosemtamab. They’re more accurate than my gestalt. But two months is all it took from the time he had his total glossectomy with cancer-free margins on May 25, 2023 to having six to eight new tumors by July 21, 2023, so you can understand why two months feels insufficiently watchful. Two months for a tumor this aggressive is plenty of time to kill a man.

At some point, perhaps soon, the petosemtamab will stop working, and Jake will have to switch trials, or die. Switching to a new trial means a “washout period” of at least a month—a month without treatment. Which means that waiting too long to notice a change means giving the tumors extra time to grow unchecked.

So I watch. After an initial worsening, between July and September, the left-neck tumor slowly receded and started to flatten out. CT scans in January showed a 16% reduction in overall tumor burden. During the summer we’d been preparing for Jake’s imminent death, and now, thanks to petosemtamab, there’s the teaser of a little more life, like a carrot dangling on a stick.

I’ve let myself relax a little into the interregnum period. I did something dangerous and began to imagine what a future might look like where Jake is alive to meet our child, to maybe raise it with me, for a time. I can’t imagine that future separate from the constant threat of it all being suddenly destroyed, but I still imagine it. The cancer would be there, but we could live a life with it, if it just quiesced. Ever present, but not encroaching on Jake’s jugular vein, or our time together.

I fantasized about years of seeing Jake when I come home from the ER, taking a walk, reading beside him on the couch, eating a curry he’s made, getting into bed beside him and resting my head against him for a cuddle before we fall asleep. All the things we have now, sometimes in degraded form, and which seemed impossible six months ago. Things I want more of, more than anything. But the median duration of petosemtamab in the phase 1b study is six months, and Jake’s been on it for four. Petosemtamab is working, though, so maybe the next trial will work too, and the next.

Maybe he’ll skip from trial to trial until the Moderna mRNA cancer vaccine is approved for melanoma, which looks possible as early as 2025, and we could get it off-label, perhaps giving us two years or five years, or—I don’t dare say this aloud either—ten. Jake’s written about what he calls “tentative, fluttering optimism,” as well as some of the potential trials that could come after petosemtamab: NT219, SGN-PDL1V. To you those are random letters and numbers, but to me they’re now hope.⁶ Hope is a slippery slope towards irrationality, and yet I embrace it.

Then, four weeks ago, I thought I saw the tumor start to grow. First there was a pea sized, flesh colored nub of tissue. Then, a new fullness. I touched it gently, tentatively, hoping that it was fluid. It felt firm. I watched it throughout the day as if it would suddenly stretch and multiply. I feared bad news.

On Jan. 16, Jake got routine monitoring CT scans. We waited for the results in the same way we’d lived the week before. Our usual rhythm of walking, reading, writing, cooking, and sleep. I eyed the tumor suspiciously, questioning my own observations. I compared it to old pictures. I tried to idly touch it, to see if it felt different. I watched.  

“Relax, nothing changes until we get results,” Jake said, “Today’s the same as yesterday and the day before in terms of what we do.”

Sure, technically.

“We have a plan if the drug has stopped working” he said, which was also true.

“We have a plan,” I agreed.

We’d done as much as we reasonably could, had researched potential next trials and established care at every plausible hospital. Still, my internal panic mounted. The familiar ache felt like a fresh wound. I had too clearly seen the image of an unlikely future. I’d let myself believe, however briefly, that a real future was possible. I wanted so badly for tomorrow to be the same as yesterday and the day before. I wanted the tomorrow after that, and after that, and after that. I want boring. Lots of boring.

Recently, my parents found an old journal of mine from when I was 14 on their bookshelf, and gave it to me. In it is an entry that, in the extravagantly pretentious way of rural, isolated teenagers who have discovered the philosophy section of the school library, quotes Kirkegaard:

“How dreadful boredom is – how dreadfully boring; I know no stronger expression, no truer one, for like is recognized only by like…I lie prostrate, inert; the only thing I see is emptiness, the only thing I live on is emptiness, the only thing I move in is emptiness…I am dying death. And what could divert me?”

Beneath it I wrote: “Boredom is worse than death. It is death. Doing the same thing, eternally unchanging, would be hell.”

I didn’t know then that the same thing day after day sounds like peace. Who in a war zone doesn’t want to wake up in the morning and see that everything is as you left it and not destroyed?

When I lie beside Jake at night, I don’t really think about all the diversions and distractions—the excitement—that we’ve enjoyed in our life together. And we’ve enjoyed a lot. Our confection of a decade in New York City. Hikes in the snowy Northern Arizona woods. Getting lost in the Redwoods. Our trip to Belize last February, when we thought cancer was behind us. Fish, the warm water, a spotted stingray, bicycles around the Caye, a dip in the warm dark ocean after midnight. The things I thought made life not boring.

Instead, what I think about today are fifteen years of what I most love now: waking up in the same bed, going on walks, reading, writing, and making dinner together before going to sleep. If I’m repeating these activities throughout the essay like a mantra, that’s because it is my mantra, and these are the raw material that both focus my concentration on our life together and make our life together. I didn’t know that these familiar activities would become exciting, simply by still having them, and by having Jake. That similar days, day after day, when they’re with the person most important to you, come with so many textures and details that they’re not really the same. How are we all just living our lives not realizing that until it’s too late?

When the CT scans returned, they did so with a soft chime—an alert notification from the MyChart app on Jake’s phone. We got the chest CT scan early, and it appeared to show stable disease—but we had to wait a long week for the neck CT scan. I had relaxed my constant refreshing of the app after three days with no results, and replaced it with a constant anxiety that felt similar to waiting for the jump cut in a horror movie. The notification still surprised me when it came. It made my heart beat so hard I could feel the twitch of my jugular. I was dizzy as Jake clicked on the results and saw the answer: stable disease. The radiologist noted some more fullness on the left side of his neck, but more tumor shrinkage in other areas.

My relief was violent. I didn’t know relief could feel so violent. It was as if someone had punched me in the solar plexus. I doubled over, the wind knocked out of me.

“This is good news!” Jake said, laughing. “We don’t have to think about this again for another two months! Were you really convinced the news was going to be bad?”

I nodded.

“I’m happy,” I said.

“This is happy?” he asked, looking alarmed as I sunk to the floor.

I shook like a gazelle that had been pursued by a lion and barely escaped. I gave Jake a thumbs up. I didn’t have to see him to know his skepticism. I gave him a second thumbs up while I caught my breath.

“Women are strange,” he said.

So when Dr. Sacco asks me what I think, I say that I think that the tumors on the left side of Jake’s neck look the same as they did two weeks ago. I think when we get home we’ll go on a walk, and read and make dinner together, then sleep, like we did yesterday, and like we’ll do tomorrow. If we could keep living the same, simple rhythms for the next twenty years, nothing would be more exciting than being boring. I think, for a short time, maybe a week or two, I’ll let myself breathe. Dr. Sacco looks at me, awaiting an answer.

I say, “I think boring is very exciting news.”

If you’ve gotten this far, consider the Go Fund Me that’s funding my husband Jake’s ongoing cancer treatment. Essays and Archives are not paywalled, but your support gives us more time to focus on both writing and each other, which we appreciate!

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1. For Jake, “boring” also means stable, and that he’s not going to have to say his final goodbyes just yet.

2. For those of you who weren’t theater kids, saying Macbeth in a theater is right up there with saying “good luck” instead of “break a leg.” It’s a curse. You’ve just cursed the production, or the actor, respectively. Instead of Macbeth, you call it “The Scottish Play.”

3. Someone published a paper called “Lunar phase cycle and psychiatric hospital emergency visits, inpatient admissions and aggressive behavior” to clap back at the haters who rolled their eyes at us. Reproducible? Probably not. Proof of my biases? Absolutely.

4. Jake is excited to be getting an “effective accelerationism” sweatshirt.

5. One of the early, concerning features of Jake’s initial diagnosis was this “perineural invasion,” so when a paper in Nature on “How cancer hijacks the nervous system to grow and spread: A new wave of research is unpicking the relationship between cancer and neurons — and looking for ways to stop the crosstalk” came out, I read it carefully. The research is too late for Jake, and yet I want to understand as much about what’s happening to him as I can.

6. The longer Jake lives, the more likely he is to see new trials appear, and to see phase 1a trials move to 1b or 2. To take one example, Strand Therapeutics just got its investigational new drug (IND) application approved by the FDA, which will allow it to launch phase 1 trials of its self-replicating mRNA vaccine in solid tumors. That trial is an intratumoral injection, which probably makes it not ideal for Jake, since some of his tumors are in his lungs, but maybe he’ll live long enough for it, or for a systemic delivery system, to become relevant.