Seeing as a doctor, seeing as a wife

Both good medicine and beauty are in the eye of the beholder.

This essay was written in August 2023 and is part of a series previously unpublished on Substack.

It’s 11 p.m. and I’m shaving my dying husband’s head.

We’re in the bathroom, lit only by a curlicue of nightlight. I’m wielding a heavy pair of metal clippers in my right hand, like a deranged, crying barber, as tufts of dark brown hair collect on the broad, smooth expanse of Jake’s upper back. He’s kneeling in front of me, watching intently in the mirror, assessing progress, maybe. What’s he thinking about this literal and symbolic loss? I reach down to collect the soft piles of hair at his feet and toss them into a plastic grocery bag we’re using as a trash can. I used to love playing with these curls just behind his ear: a tickling call for his attention.

Then chemo caused his hair to start coming out. The tipping point happened moments before bed.

“Now,” Jake had decided, looking at a clump of hair in his fingers, “let’s do it now.”

I slide the clippers across Jake’s scalp. Separated from his head, his hair goes from the basis of my favorite diminutive— I call him curly-fry— to something inert. Just hair. It’s no longer his, and thus devoid of most sentimentality.

The buzz of the large metal clippers is insistent, making my ears ring. Lifting the clippers is hard; my limbs feel sore and exhausted—a side effect from crying much of the day (much of every day), as if carrying heavy emotion is akin to lifting heavy weights at the gym. My body seems reluctant to perform this task, even though, when Jake asked me to shave his head I said yes: I want to do it for you.

I’m not crying over the loss of his hair, though I know as well as you do that hair loss has become a boringly cliché cancer trope. No, what discomfits me is that, until Jake observed it, I hadn’t noticed his hair falling out. I didn’t see the obvious hair scattered throughout our apartment, as if I was living with a six-foot-tall, literary, shedding dog: hair on the pillows, hair on the blankets, hair on the couch, hair on our clothes—hair even on and in books on the bookshelves. How did hair get in the books? It was everywhere. And I didn’t see it.

What else wasn’t I seeing?

I’m an ER doctor, and, when I was in residency training, learning to become a good doctor meant learning how to see: the way a patient bites their tongue too frequently during a conversation, the way their speech sounds slightly slurred, the vague discoloration on the edge of their tongue. Other organ systems need to be observed, too, of course, but tongues are top of mind, since Jake has Squamous Cell Carcinoma of the tongue.

In theory, one key to being a good clinician is being able to observe (although I know a reasonable number of dense physicians). We study how the body works, primarily so we can understand the infinite ways that it can fail, and how to intervene to stop failure and improve health. But knowing what to do with a problem isn’t enough if you can’t identify that there is one in time. “In time” is key: if you can’t work fast, by the moment you realize the problem, the patient will be dead, or debilitated, or have suffered needlessly.

Much of the skill in being an ER doctor simply comes from practice: identifying who’s sick and who’s probably okay to nurse themselves at home is really the risk stratification of patients. Assessing patients is a skill honed from seeing vast numbers of them, and, like all probabilistic measures, I sometimes go by the probability’s dictates and am later proven wrong. Medicine is humbling like that. Bayesian inference isn’t perfect.

I can’t explain all the subconscious calculations that cause me to hear alarm bells when I see a brief, transitory tremor in one patient, but to know that, in another, it’s a sign they’re cold because we keep the ER temperature low, like a comedy club. And sometimes—because this is the nature of being a human being doing a job in a messy, chaotic world—I notice a symptom, and I misunderstand what it means.

Early on, I didn’t notice enough about what turned out to be Jake’s cancer. So I’m left wondering: if I’d asked him to let me examine his tongue, instead of suggesting he not chew so quickly when he bit it for what seemed like the third time in a week, would the outcome be different? Was there a window of opportunity in August 2022, before the tumor invaded local nerves, when his first surgery might have been curative?

Not acting sooner and pressing Jake to act sooner is the biggest error of my life. And though I’ve been told repeatedly that I need to focus on being Jake’s wife, not his doctor—as if I could separate the two, as if monitoring his physical changes isn’t a sign of love—there’s no other physician as motivated as I am to observe the minutiae of Jake’s body. For all that I miss, no other doctor will see as much as me.

Some of my observations likely have bought us more time: I pushed for the CT scans that diagnosed his recurrence a month earlier than would have happened otherwise, because Jake developed slightly more pronounced snoring at night and wasn’t gaining weight despite ferociously consuming calories through his peg tube. I caught a tracheostomy infection early because of a change in odor I noticed when I curled up to him and rested my head on his chest.

Excessive studying can become pathologic—I can’t start believing that every time I close my eyes something will go unnoticed and therefore go wrong, yet, on the other hand, I also can’t be sure that it won’t.

What if slipping the pulse oximeter on Jake’s finger while he sleeps, when his breathing is irregular, allows me to intervene the moment he becomes apneic? It’s possible, and maybe even probable, that my hypervigilance makes no true difference, and that I want to believe I have some agency that I don’t. It’s the paranoia that comes from lack of control—or maybe it’s merely good emergency medicine. It’s also who I am: I can’t give up being a doctor, any more than I can give up being a wife.

Until the night of the great shave, I hadn’t thought about what chemo would do to his hair. We were focused tightly on two big chemo questions: will it stabilize his aggressively recurrent squamous cell carcinoma of the tongue long enough to find a clinical trial that might act a life-saving Hail Mary? Or were the tumors growing so quickly that he wouldn’t survive the week?

In a month and change, Jake had gone from clean surgical margins and barely detectable circulating tumor DNA (tumor DNA can circulate in the blood and be monitored via tests like Signatera’s), to four large, new tumors around the tongue flap and in the neck, along with probable metastases in the lungs. That occurred while Jake was on an immunotherapy drug called Keytruda, which, if he’d responded to it, was supposed to be a miracle drug that would save him, as it has saved many others. But he’s not a Keytruda responder. Chemo, for what Jake has, is only palliative. We were playing for time.

For the week after the first, desperate chemo infusion, all I could see were signs that Jake was going to die quickly. I’ve seen a lot of people die in my line of work.¹ I know how to recognize the harbingers of a final decline: Jake’s mouth rested in a wide “O” shape as he slept. I saw the irregular rise and fall of Jake’s chest, and he was occasionally apneic. I sat in bed with him all day, frequently holding my hand in front of his mouth to make sure he was still breathing.

Jake’s heart was erratic and quick, as I held my fingers against his radial pulse and surreptitiously checked his Apple watch. I slid a pulse-oximeter on his finger to check his oxygen blood saturation. I held him and I told him I loved him and—this was entirely unlike him—sometimes he didn’t say anything back. I’d speak and I’d touch him, and he’d not seem to hear me or feel me. I sat beside him and watched him breathe. Because watching him breathe meant he’d continue breathing, right?

It was as if both his body and mind were lost to me in a distant fog. All I could do was wait to see if he’d emerge.

It didn’t occur to me that Jake might simply be over-sedated; his response to the medication looked too much like the slide into the void.

Before this moment, Jake might have been a cancer patient, but he’d never looked like a cancer patient to me. That’s a difference between looking at him as a doctor and looking at him as a wife: As his wife, I look at him and I see all the things still going right. I see his body as a conduit for pleasure, joy, connection. The peg tube, the thirty-pound weight loss, even the missing tongue—all clinical signifiers of “cancer patient”—don’t register for me when I see without my clinical eye. When I’m not careful to watch out for new signs and symptoms, I look at him, and without trying to, see just Jake.

Although I wonder what I’m missing when I don’t look at him clinically, I also wonder what I’m missing out on when I do.

In thinking about the ways I look at Jake, I’ve also become acutely aware of the ways he looks at me. And I’ve come to understand that no one will ever see me the way he can, again. Jake and I are both almost forty. That’s hard for a woman. There are a lot of assumptions being made about my body and my relevance that are difficult to ignore.

I’ve started noticing some grey in my hair, some slackness around the jawline, and the recent circles under my eyes. Entropy doesn’t care that I eat a mostly plant-based diet, or get mistaken for a 30-year-old with some frequency (or at least, I used to, before Jake’s illness aged us both 500 years). Ultimately, we’re all victims of physics and biology, until anti-aging science starts producing blockbuster products.

But when Jake looks at me, he sees me at 25, showing up to our first date in a grey mini-dress, black boots and red lipstick. He sees me at 29 in a striped bra and panty set in our 35th story Seattle hotel room, pressing me against the cold glass. And he also sees me as I am now. I’m all these ages at once, as he is to me. Love isn’t blind only to ugliness, but to decay.

Look at two 80-year-olds gazing at each other like teenagers and you’ll know what I mean.

When I lose Jake, I’ll lose someone ever seeing me throughout all my ages again. I’ve said that parts of me will die with him, and mean more than the parts of my heart and the parts of my personality that act in relation to his. I mean entire eras of my life, all the views he was privy to, and therefore, much of my youth, goes as well.

No one—even if I find love again one day, as Jake has urged me to do—will ever look at me at see me at 32, skinny dipping on a trip to Gunnison nude beach in New Jersey with a group of friends, laughing at how cold the water is under the sun of a hot summer day.

Jake’s Dad brought the point home to me unintentionally when he came to visit Jake in the infusion center during chemotherapy. Jake was sedated from the meds and his Dad sat beside me, talking nervously, and got onto the topic of soul mates: “The closest I got was to my high school girlfriend,” he said. “I don’t know her last name now, or when she got married, or where she lives. I wouldn’t be able to find her. She’s a 75-year-old woman now.” He looked towards the door of the infusion center, as if anticipating her sudden, miraculous arrival. “But if she walked in here right now, I’d recognize her. I’d see her as she was at 16 at prom, in a white empire dress, blue eye shadow and a bouffant hairdo.”

Jake has said that in the end, I’ll never be able to look back and say I didn’t do everything I could for him. I’ve found ways to keep him alive that are based in clinical treatment, and, more so, I’ve kept him alive by making life seem more appealing than the alternative. Knowing he feels that way is a small, inadequate comfort if I can’t keep him alive as long as he can and should be alive. But it is a comfort.

Making sure he has a good haircut doesn’t rank as highly as finding the right clinical trial or ensuring that the right CT scans and medications are ordered. It’s less than blending a cookie with milk or some lentil soup for him to drink (and taste—an ability he’s recently reacquired). But in this moment, making life seem better than death matters. Cancer makes your world small, focusing it down to how you approach even the simplest tasks. Good medicine and love are both in the details.

There’s a pretty Regina Spektor song called “Sampson” going through my head as I finish shaving Jake’s head— the kind of music he accurately labels an “emotional lady song.”

I cut his hair myself one night

With a pair of dull scissors in the yellow light

And he told me that I’d done all right

And kissed me till the morning light

I wish Jake could kiss me for hours, like he used to. But the split mandibulotomy during his total glossectomy spliced through his lower lip, and the nerves with it, leaving his lip mostly insensate. Instead, I hold his hands, I rub his back, I curl up beside him while we sleep, and I will soon run my hands over the soft stubble of his newly-shorn head.

He reaches up and folds down the top half of his ears so I can buzz off the tiny hairs around his hairline, and then we’re done shaving. I feel a sudden rush of giddiness. Jake still looks like himself. He’s lucky not to have a potato-shaped head and beady little eyes. He pulls off bald strikingly. He looks handsome. Of course he does. I love him, so of course he does. He looks handsome to me even when he’s looked cadaverous to others.

It’s disorienting to hold two truths in my mind at the same time: one truth, Jake is sick, terminally so. Seeing his frailty those first few days after chemotherapy, when I was sure he was about to die, was seeing things as they are. But so is the other truth: seeing him as vital, quick-witted, deeply connected to the world of ideas, and, as it turns out, very sexy bald.

I tell him so: “You’re very sexy bald.”

Jake fixes me with one of his dubious looks, that I know so well.

“You are!” I say.

He squints at me, this time with more skepticism.

“That’s my diagnosis,” I say, both doctor and wife.

He accepts this with a smirk and examines his new haircut. When he lets go of his ears, I kiss the tops of them. I kiss the top of his head. I kiss his upper lip, that still has some feeling. Then he tells me that I’ve done all right.²

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1. Something serial killers and ER doctors have in common.

2. This essay first appeared on The Story’s Story in August 2023