Just because you won't see it, doesn't mean it isn't there

Medical denial's dark power.

Events in this essay take place in May 2023

My husband, Jake, is upstairs in the ICU after having his neck flayed open and his cancerous tongue cut out, while I’m downstairs working a shift in the ER, evaluating a woman with a chief complaint of swelling on the right side of her neck. Per triage, my patient’s symptoms started yesterday and she’s worried that the swelling might be an infection or maybe a pulled muscle, but the moment I walk into the room I know that I’m going to ruin her life.

She looks like the kind of woman who’d be cast as “healthy, early retirement age female” in a TV ad for a 55+ active living community with an on-site country club. She’s wearing a tennis skirt and matching shirt, skin slightly bronzed, gray-blonde hair in a youthful pixie cut. I wouldn’t be surprised if she rides a Vespa.

“We’re going to play doubles after this,” she says, motioning to her husband, who’s wearing a similarly sporty outfit with matching blue stripes, as if this stop at the emergency room is a minor errand, like swinging by the drug store to pick up sunscreen. A patient dressed for her tennis game in an hour is delusionally convinced of her wellness, or has no idea how long an ER visit actually takes, or has steeped her teabag too long in the waters of positive thinking and is dressing for the outcome she wants, not the one she’s likely to get. I know these patients well; they’re the too-busy-to-die type, and whether it’s work, friends, or family, they come to the ER when they have somewhere else to be, soon, as if the weight of a room of people waiting for them will tip the scales against bad news.

“May I examine you?” I ask, before reaching out to touch her neck. I’m sensitive to “ask first” issues: Since Jake’s diagnosis of squamous cell cancer of the tongue, he’s been probed, palpated and squeezed so much that if he were fruit, the grocery store would deem him unsaleable. I thought myself a considerate doc before Jake’s diagnosis, but Jake has pointed out my propensity to idly jab my fingers into his neck under the guise of exploring something that “doesn’t look right,” so maybe I shouldn’t feel quite so superior to the grabbers and the fumblers in my specialty. Fair enough. Jake says it’s not my fault, though, because they must’ve taught a course on required manhandling in medical school, and I needed to pass for my degree. I try to be cognizant of at least getting consent before jamming my fingers into the soft and tender spots on the meat, I mean person, in front of me. 

Preceding my exam by saying, “this area is sensitive on everyone,” isn’t entirely true, but it sounds a lot better than “What in the world is that? Let me mash on it for a few minutes to see if I can find out. This won’t feel good.” Consent is important, but it’s also important that my nonchalance put the patient at ease, like chloroform: nothing, not even that giant lump on your neck and face, is so fascinating or so weird that I can’t control myself for the time it takes me to dispassionately ask if I may proceed. She smiles and nods. Her husband smiles and picks up his tennis racquet, which, for some unknown reason, he didn’t leave in the car. I guess the ball is in my court. The prop furthers the unspoken argument: See, doc? She’s fine. Why would I be carrying this around on the day we discover our lives as we know them are over?

My patient turns her head to the far left and points at the swollen area protruding from her jaw and lower face, though the mass was obvious the moment I walked into the room: a firm, oblong lump the size of a small lemon. The skin overlying the lump is the same well-tended, poreless skin as the rest of her face. I look at her matching outfit, her coiffure, her clean white tennis shoes. She isn’t a woman who doesn’t notice.

“How long has this been here?” I ask, continuing the theater of carefully palpating her face, although I’ve already felt enough. My fingers immediately know what the CT scan is likely to show; the tumor explains itself by feel. It’s fixed and firm. It doesn’t have the mobile spring of a benign fatty lipoma. It’s not tender or red or fluctuant, which would point to infection.

I’m careful not to call it a mass, not yet. A subset of patients, firm in their conviction that they’ve only come to the ER to verify they’re fine, will spook and either refuse confirmatory testing (which can take hours) or even elope from the ER against medical advice (“AMA”) if I too quickly bring up cancer or another devastating diagnosis. Cancer, don’t you know, can be outrun if you get out of the hospital fast enough. The same fear that kept them from coming through the door for an earlier evaluation propels them right back out. They’re a bit like skittish cats; don’t try to grab them by the scruff and force them into seeing the truth. They have to be willing to come to the truth. Often, these patients like to have the excuse of somewhere to be, like, say….a tennis match. Which she’s going to have to miss to get the CT scan.

The situation is delicate. Sometimes mentioning cancer-related words will bring forth a rush of anger and recrimination—This is ridiculous. I feel fine! I want another doctor! What kind of quack is this Dr. Stillman?—but delaying care might mean the difference between the option for a surgical resection or not, if the surgical resection is even still on the table. Not-yet-knowing is the hope she clings to, and I need to start the process of loosening her grip. 

“It’s been there few days?” She says.

I’d guess it’s been there at least a few months, if it’s aggressive, otherwise, could be six or more. I know that it’s been there long enough for her to have felt how strange it seemed under her fingers while putting on moisturizer. She probably knows that I know she knows how long it’s been there.

I reply with a non-committal grunt.

She wants the absolution that would come from my acceptance, or non-rejection, of her story.  When Jake got diagnosed with cancer, we wanted absolution too. Months before I saw the tumor on the surface of Jake’s tongue, we’d both written off the pain he’d been feeling as being from biting his tongue while eating too quickly. I’ve accused Jake of being Labrador-like and especially food motivated, so accidentally gnawing on himself while overenthusiastically enjoying a meal wasn’t out of character.  We didn’t think: “Maybe he’s biting his tongue because a tumor is causing bulk.” We explained away his slight slur as a propensity towards speech so fast that it becomes a mumble. Even when I first saw the plaque-like discoloration on his tongue, I simultaneously thought: that looks like cancer, and, also, that can’t be cancer, must be something else. Fungal? Weird chemical reaction? I’d seen tongue cancer images in med school textbooks, but I hardly believed that cancer was cancer when cancer was in front of me, somehow growing on my husband. He never smoked! Never chewed tobacco. Hardly drank. No risk factors. Why give something illogical attention? I only refused to let him “see if it improved,” because I knew what the correct answer on a medical licensing exam would be if he were a test question, even if the answer didn’t feel logical.[1] It would’ve been so easy—so pleasant!—to enjoy ignorance for a while longer. Humans are great at rationalizing. Look at our collective response to climate change.

Medical denial is powerful.

I’ve lost count of the number of patients who’ve come to the ER with toes so necrotic that they come off when I remove their shoe[2], so anemic their lips are white, or with fungating masses have broken through the skin—the last group being the products of months, maybe years, of the tumor eating away at the flesh that gave rise to them, like some cancerous Athena springing from the head of Zeus. And they say: “This just started yesterday.”

“It’s so strange,” the woman continues, “We played a strenuous game of doubles a few days ago and I thought, oh I must have pulled a muscle and it swelled up.” Her speech is quick and nervous. Head and neck cancer is particularly devastating, even by cancer standards. I try not to imagine her and her husband’s future as clearly as Jake and I are currently living it. “I whip my neck around so much during the games, we get very competitive!” she continues.

So many patients try to convince me, as if I’m the one who decides if they have cancer. I want to take her hands and sit on the bed and say: “It’s not up to me.” If it were up to me, my 39-year-old husband would still have a tongue, not a flap of skin and muscle created from the lateral part of his left thigh in lieu of a tongue. If it were up to me, he’d be able to speak, and eat, and breathe without a tracheostomy hole at the base of this throat. If it were up to me, the bottom lip that I kissed after saying “I do” five days before meeting the tennis patient wouldn’t have been split in two during his surgery, severing sensation. If it were up to me, I wouldn’t be commuting to work from the awful reclining chair beside his bed where I’ve been sleeping for the last week.

My sense of powerlessness, of impotence and limitation—the feeling that all the second, third, and fourth opinions I elicited from colleagues, all the research I did and medical knowledge I’d spent over a decade collecting, still couldn’t compete with the resistant biology of Jake’s tumor—the feeling of butting up against the borders of what medicine can do, both for Jake and for my own patients, has been amplified since Jake landed in that post-op recovery bed.

It’s not like I wasn’t aware of medicine’s limitations before the person I love became a daily reminder. Being an ER doctor is about working with limitations: I only have a short time with each patient, a few minutes in which to establish trust, and maybe a few hours total for the interaction, incomplete information, as well as 15 other patients who simultaneously need attention. The most important resources—time and attention—are finite. So are physical resources: there are only so many available beds, CT scanners, and machines to process blood tests. I’m working at a new ER that for some reason didn’t include a dedicated CT scanner, which is like getting a fancy new car with mismatched wheels, though rumors claim we’re getting one soon. That should improve patient satisfaction scores, too. Long waits for scans tank patient satisfaction for reasons that I understand, in that I’d also be angry about having to wait so long, but it’s not feasible for me to personally buy a CT scanner from Amazon and install it in the ER.

While there’s a God complex problem among some medical specialties—and here I’m looking at you, surgery[3]—most ER docs don’t suffer from it. Though the height of excitement in ER work comes from “great saves,” as if we work on Baywatch, great saves are so little of the job. Much of the time, the CPR doesn’t work, or, even when it does, it’s infrequent that the person returns to a normal life. Brain damage happens real fast in real life. Often a patient is already so infirm or ill that resuscitation seems less “great” than “inhumane.” Even when we succeed, there are limits on how much.

I often call my Dad when I drive home after a shift, and he always asks: “Save any lives today?” If I say no, he asks: “Well, kill anyone?” He never asks: “How many times did you starkly face the limitations of medical knowledge today?”, which would be a more accurate way to assess the bulk of my nine-hour shifts.

I’ve felt the shift from intellectually understanding these limitations—of feeling for my patients—to feeling the effects myself. Empathy is one thing, but experience is another. I can’t stop ruminating on the ways that, despite the best efforts of Jake’s doctors, his cancer keeps recurring. Which means I also can’t help but think of the ways that, despite my own best efforts, there’s so little I can ultimately do to get in between my patients and entropy. The way that Jake was being failed, was, inevitably, the way I was failing others. That doesn’t mean I should stop trying. Ask any patient whose throat is closing from anaphylaxis if they want to skip the shot of epinephrine because one day they’re going to die anyway, and the answer, if the patient still has enough airway to spit it out, will be both “Why are you waiting to give me the shot!” and “I want a different doctor.”[4]

When I finish the physical exam, I sit down beside the tennis patient and say, “I don’t think this is an infection. It doesn’t hurt, it’s not red, and there’s no warmth. It also doesn’t feel like a muscle injury, since you can move your head and it’s not tender.”

I want her to know I’ve considered her hoped-for diagnoses. Once I start saying the hard things, anxiety will likely cause a kind of deafness. I’m still worried I might scare her off when I tell her why I’m about to order a CT scan, but it’s more likely that she’ll stay if she feels heard, even if what I’m about to suggest doesn’t seem possible.

I finally call it what it is: “I’m concerned because the mass feels like a tumor. We have to look with a CT to see more, but I want you to know it might be cancer. The CT scan will tell us a lot. Will you stay for it?”

She stiffens in bed and looks over at her husband. He’s still holding the tennis racket. I’ve had patients’ family members throw chairs, punches, really whatever was nearby, at me in anger and disbelief over hearing the news their loved one has died, or is going to die. I guess they’ve never internalized the “don’t shoot (or punch, or kick, or throw scalpels at) the messenger” message. But her husband doesn’t move, gripping the racket as if clinging to the afternoon they’d planned instead of the one they’re getting. He looks back at her, she looks at her watch, the racquet, the door, then back at him. He puts the racquet down.

“Let’s wait until the scan comes back before holding onto assumptions,” he says. But I can see she’s already let go. She knows. She’s probably known for a while.

The CT report returns: Mass arising from the right salivary gland with irregular borders, highly suspicious for malignancy. My own memory of the moment Jake’s CT scan report revealed malignant destruction of his hyoid bone is still raw. I wanted to be wrong: about Jake, about her.

I call ENT and schedule a follow up appointment for her in three days, the soonest ENT has. Scheduling the appointment makes her more likely to go and frees her from the action paralysis this kind of news causes. “What do I do next?” is everyone’s inevitable, logical next question.

I get back to her room and put the kid with belly pain and the patient who confused his contact lens drops with his super glue out of my mind.[5] I speak the moment I walk through the door, because waiting is its own agony: “I’m sorry, but the CT scan shows a mass coming from your salivary gland that’s highly suspicious for cancer. Nothing’s certain until a biopsy, but cancer is the likely diagnosis.”

She doesn’t speak for a long time. Her right hand reaches up and gently probes the circumference of her tumor.

“Did I miss it?” she asks. “Do you think it’s been there longer?”

She doesn’t have to ask what she’s really asking; Jake and I have asked it, too. At every new piece of bad news, the useless, reflexive, “What-if we’d gone to a doctor sooner, would everything be fine?” questions natter on in our heads like a loud, annoying, socially insensate relative at a holiday dinner. Self-recrimination turns out to be a terrible replacement for fear.

I won’t be the surgeon who performs her resection, or the oncologist guiding treatment, or the PA who replies to her messages on the patient portal, or the social worker she cries in front of. There isn’t more I can do for her medically, but there’s one more thing I can do.

I may never see her again, but she’ll see me when she pictures this day, like I still see Dr. Ossoff, the ENT who broke the news of Jake’s cancer, confirming our suspicions and changing our lives irrevocably. Maybe when she recalls this moment, my answer will at least be as loud as her regrets: “I think you did the right thing coming in when you did,” I say. I don’t know whether coming in sooner would’ve made a difference. But if the choice is between now or even later, now’s right. I don’t want to lie to her, or to any patient. But I want her to recall my voice forgiving her for waiting, on those inevitable days to come when she can’t forgive herself. “People often wait much longer,” I tell her, which is true. “It’s easy to miss growths. They’re gradual. They’re sneaky. You did the right thing coming in today. You did everything you could.”

If you’ve gotten this far, consider the Go Fund Me that’s funding my husband Jake’s ongoing cancer treatment.

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[1] I’ve written before that, for any physician, the overwhelming urge to get the test question right often overrides all other impulses due to so many years of school and licensing exams.

[2] Back in NYC we called this “Bellevue foot,” because, especially after winters of inadequate shelter (fomented by NYC’s utter failure to allow sufficient housing to be built), frostbite, and the 24/7 wearing of shoes, patients would come to the ER—especially safety net hospitals like Bellevue, or Kings County—and when we removed their shoes, dead, mummified toes often came with.

[3] I’m not saying you’re not impressive! You’re very impressive. I promise. Maybe, though, chill a little?

[4] Towards the end of a shift in residency, after a particularly exhausting string of shifts, I saw a patient and asked the usual orientation questions like “Do you know what year it is?” and “Do you know what day it is?” The patient answered the last question something like, “It’s Thursday.” I said, “Sorry, no, it’s Tuesday.” When I walked away, one of the nurses grabbed me to say that it was in fact Thursday. I felt ethically compelled to tell the patient that it was Thursday. The patient asked for a new doctor. Can you blame him?

[5] I didn’t even have to consult ophthalmology: he was fine, though unhappy, and he saw the humor in the situation. Except he only saw it with one eye, because the other was glued shut. Look, this is the ER, you have patients with absurd problems right next to patients with existential ones.

All patients are fictional.

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