“Attachment is suffering, attachment is love: After he dies, my husband wants me to not just survive, but thrive” is Bess’s latest essay, and it’s hosted at her new Substack. You should subscribe!
Attachment is suffering, attachment is love:
Author Archives: Bess Stillman
Seeing as a doctor, seeing as a wife
My wife, Bess, wrote this.
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 I 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.* 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. It was as if both his body and mind were lost to me in a distant fog. All I could do was sit there and wait to see if he’d emerge.
While this was happening, our friend Fiona was visiting, both to see Jake before the end and to help with any chemo-related emergencies (she’s an oncology nurse and thus uncommonly equipped for such things). Throughout the long days, she’d pop her head into the door frame of the bedroom and ask: “Are you going to stay in there all day?
“Yes.”
“Are you just watching him breathe?”
Also yes.
“Do you think that watching him breathe means he’ll continue breathing?”
“Oh, absolutely.”
Fiona nodded. My logic seemed reasonable, considering. Five years ago, she’d been sitting where I now was, when she lost her own husband to a drawn-out illness.
“I did the same thing,” she said.
And I felt understood. Slightly vindicated, even.
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 over 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 are 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.
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* Something serial killers and ER doctors have in common.
How much suffering is too much?
This is by my wife, Bess. You can find her new writing on her substack.
For the second time in a two weeks, Jake tells me he’s ready to die. The first time he says it, he’s frustrated: red-faced and retching, trying to hack out a thick glob of the mucus of the sort that’s incessantly collecting in the back of his throat. Jake has squamous cell carcinoma of the tongue, and each new attempt to burn, poison or cut out the cancer has added to a list of losses that aren’t adequately balanced by gaining time on this planet.
The first surgery used a CO2 laser to cut out a cancerous portion of the left side of Jake’s tongue, and as soon as Jake recovered adequately from the surgery he got hit with radiation, which scorched away mucous membranes and skin. Radiation caused dry mouth and thick, ropy secretions—but the surgery and radiation didn’t prevent the cancer from recurring. As bad as the original treatments were, the new surgery entailed a “total glossectomy” and “partial laryngectomy,” which is medical terminology for “his whole tongue and part of his larynx were removed and replaced by a flap of tissue from his thigh.” The new treatments cost Jake the ability to speak and swallow normally, or to feel saliva pooling in the back of his throat and clear it. The thick secretions and abnormal swallow mean he’s constantly battling to expel phlegm, only to have it immediately return. The “goo,” as he calls it, is relentless. He is constantly spitting, hacking and choking.
“It never fucking stops!” he wheezes between attempts to hack that mucus up and out. He gets some out, but it’s obvious that he’s not getting all of it.
The blue, v-shaped vein in his forehead is popping. He’s clutching the edge of the sink, trying to expel a thick glob that I can hear rattling as he tries to speak through it. His fingers are turning white. He attempts a sip of water—a skill he has just recently started to re-learn—which gets caught in the mucous, so he aspirates some in his lungs. He gasps stridulously but no air is moving into his lungs. For thirty terrifying seconds he’s not getting air. The muscles around his ribs retract, straining. I’m an ER doctor, but a Heimlich maneuver for a small amount of water isn’t going to do much. Anyway, in this moment I’m not thinking like an ER doctor, I’m a panicked wife. I need him to breathe again. I need this spasm to pass before he passes out. I’m hopelessly planning out how to get a man nine inches taller than me to the ground safely, when he turns red and gasps. Finally, he spits out a huge lump of goo. It’s quickly followed by another. He strikes the counter with his hand.
“Enough!” he says. “All day, every day. It’s disgusting. I’m disgusting. I try to sleep and there’s goo, I wake up and there’s goo. I spit it out and there’s more goo. I’m ready for this to just be over. The only way it’s ever going to stop is when I finally fucking die.”
I stop reaching towards him and keep my mouth shut. I just squint at him like I’m staring directly into the truth. He’s right. I don’t want him to be right.
How does a person decide how much suffering is too much? I’ve spent nearly every day of my career faced with that question. Each emergency room shift brings patients with their tenth bowel obstruction after their fifth surgery for recurrent colon cancer, patients on their second transplant (with more organs failing) coming in twice a week to have fluid drained from their abdomens, their lungs, from around their hearts. Autoimmune patients and diabetics losing limbs piecemeal. All these people, trying to stay alive in a state of perpetual falling apart. Entropy is so clearly winning. I can see why they’d want to say “enough,” and let go of the gift.
Before we knew for sure that Jake’s cancer had returned, we were walking hand-in-hand around downtown Phoenix after grabbing tacos for dinner (back when we could just grab food, put it in our mouths, chew, and swallow, like it was nothing at all). We knew Jake’s PET scan was abnormal, and that the CT scan was too. But Jake had just completed radiation, which frequently causes inflammation, leading to false-positive early PET scans. There was a good chance the abnormal CT showed destruction of the hyoid bone in his neck—a potential side effect of radiation—which, while not optimal, isn’t a tumor and thus wouldn’t kill him.
We’d met with his ENT surgeon, a Dr. Michael Hinni, earlier in the day, and we’d scheduled a biopsy to settle the “is it cancer?” debate. That night, we had the luxury of speculation. It was Schrodinger’s tumor: both present and not present, with us heavily leaning on the side of “not present” as a comfort. Dr. Hinni had told us that a recurrence meant “salvage surgery”, which would cost Jake half his tongue and part of his larynx, and could leave him unable to eat, swallow or speak. Dr. Hinni and the surgery team would have to replace half of his tongue with a flap of tissue harvested from his thigh. The other option was immunotherapy, which was estimated to have a 30% cure rate—a number which we now know is so overly optimistic as to be laughable.
“If it’s cancer, I’d rather not have surgery and take the 30% chance at a normal life,” Jake says as we walk. I grip his hand as if he were a balloon about to float away. “I know that isn’t what you want to hear.”
I nodded. It wasn’t. But I could be magnanimous. It was still a thought experiment at this point. So I say, “I understand,” because I do. But also because I could still say, “I just hope that isn’t a decision you have to make.”
It was cancer. When faced with the certainty of a diagnosis, Jake moved forward with the surgery. “It’s surgery or death,” he said, and he wanted to have a shot at living. For me, he said. He’d still get the immunotherapy, to increase the odds of a long-term cure. I felt as much relief in his decision as I did fear about what that meant for the rest of the life he might or might not get.
The second, “salvage” surgery occurred on May 25 and lasted twelve hours. Around hour ten, I started to wonder if Jake wasn’t ever getting off the table. When Dr. Hinni finally called me in to tell me they were able to remove all the cancer, I was elated. He got what surgeons call “clean margins.” Then Dr. Hinni explained that, because the cancer had grown in the short time between the April scans and May surgery, he’d had to remove Jake’s entire tongue, not just half—and with it, Jake’s ability to speak, to swallow, to taste—and the relief was replaced by horror. I blacked out for a moment. Jake wouldn’t want this. I walked into the hot night air and hyperventilated in the parking lot. We hadn’t even considered the possibility that Jake might lose his entire tongue. I wondered what I would have done if Dr. Hinni had called me with an update and asked me if they should move forward with the removal? I threw up in the parking lot and felt sick relief that they hadn’t.
In a panic, I called the one person I could think of: our speech pathologist, a woman named Jessica Gregor. She reassured me that, if the surgery hadn’t removed Jake’s entire voice box, he’d likely be able to speak after a fashion again. And swallow some liquids. She told me not to give up hope, and that the road would be long, but that not everything I feared and expected would come to pass. The surgical margins were free of disease. The cancer was gone. I needed to focus on that.
I spent the first night in the hospital sitting awake at Jake’s bedside, certain that he’d decide to die after learning the news. He didn’t want to live like this. It seemed entirely possible to me that he would just decide not to.
It’s amazing what people learn to live with: Paralysis, dialysis, blindness, deafness, pain, the loss of a limb, impotence, incontinence, the loss of a tongue. For some patients, the losses accrue by degrees. I’ll see them dwindling across years of emergency room visits. Their suffering slowly compounds, each gradual change requiring a small adjustment, yet adding up to tremendous deficits. But for others, like Jake, the door to the person they were before shuts so suddenly and so loudly that it shakes the whole foundation of the building. There’s no getting used to the idea of a new life, slowly. There is just a new life. I’m not sure one way is better.
But there’s a lot we think we can’t live with that, once faced with having to live with it, we do. I’m constantly amazed by patients, like Jake, who are incredibly resilient, finding reasons to live in a landscape they expect to be desolate of motivation. Maybe we don’t even need the motivation. Maybe it’s just what we’re programmed to do. Survive.
Still, I try to give Jake something to live for.
The big things: love, affection, and (hopefully) a kid—if he can make it that long and science is on our side. And I try to remind him of the things he loves to do that he has always lived for: writing, thinking, learning. Me.
But there’s also the unexpected gift of rediscovery. Eventually, Jake gets his tracheostomy breathing tube capped, and we can speak to each other. It takes time for me to get used to his new speaking patterns, but I now understand him without great difficulty, although I need to clarify what he’s saying to people who aren’t around him frequently. Incredibly, just a week ago, he swallowed water for the first time, with the support and instruction of Jessica Gregor.
The ability to swallow escalated quickly—what time was there to lose?—and he discovered that when he swallows, he can taste, probably using the taste buds left in his esophagus and on his hard palate. So now I’m blending brownies and cookies and melted ice cream as many times a day as I can, stuffing him with sugar like a foie gras goose, hoping it’ll be pleasurable, but also in the hope that it’s one more thing—and no small thing—to live for. A way to feel reconnected to himself. Victories that distract him from ruminating on the question: how much suffering is too much? How much mucus and hacking and struggles breathing can a man tolerate? How much pain? How many things taken away? Without the victories, I’m scared that the more Jake thinks about the questions, the more he’ll settle on an answer that is: less than the suffering he’s experiencing now.
Just two months after the horrific surgery that was supposed to buy us years together, the cancer has reappeared in four new places along the margins of his tongue flap, neck, floor of the mouth, and larynx. It’s metastasized to the lungs. Suffering, it seems, just begets more suffering. It’s hard to see the person you love suffer. But even when Jake suffers, I’m glad he’s here. Here to lie next to me at night, to edit this essay when I’m done with a draft, here to just exist in the same piece of spacetime. I’m glad he’s here, because he’s still trying so hard to be. But I think I’ll probably also be glad he’s here when he no longer wants to be. I won’t be able to help myself. I want him to stay through the pain, the mucus, the feelings of drowning. And I wonder if that makes me a monster. I’m so greedy for him—for time with him for his body next to mine—that I wonder, if it hasn’t yet, will it turn me into one eventually?
I’ve seen it happen. Finally faced with the actual end, families have begged me for medical violence in the ER. As if only more technology, procedures or sheer force will solve the problem of every human’s inevitable decline. “How Doctors Die” describes the way doctors understand that medical violence at the end of life isn’t a good answer, and that compassion often means declining the last possible bits of care, which resemble torture more than medicine. I’ve felt the ribs of a desiccated 95 year old break under my hands while doing CPR. I’ve seen a heart failure patient’s family refuse comfort care in the hopes that more meds and devices will convince the heart to squeeze harder. I’ve heard the words “do everything,” so much that my relationship to futility has changed.
It would be easy to say that families’ desires for more medicine, more effort, is a product of medical ignorance—too many TV shows convincing people that CPR has more than a 10% survival rate. But that’s not the whole story. I realize now how easy it is to forget that something doesn’t work when you want it to work so badly. Sometimes, we justify these requests by hoping for a miracle. We ask ourselves: can I live with myself if we won’t try everything?
So I have been trying to ask myself: can I live with myself if we do?
I ask our friend Fiona, who was Jake’s charge nurse when he first had cancer in 2005, and who lost her own husband after caring for him through a prolonged illness just five years ago: “What if Jake is going through surgery and chemotherapy and suffering just to stay with me because he knows how badly I don’t want to lose him?”
“What if he is?” she says “If that’s the gift he wants to give you, let him. If he wants to stay for you, he wants to stay. Let him.”
“I’ve told him he doesn’t have to,” I add, hoping for absolution.
“He’ll tell you when he’s had enough.”
The second time Jake tells me he wants to die was just a few hours ago. We’re sitting in the chemo cubby, as I’ve come to call it: the semi-private, three-sided cubicles in the Mayo infusion center, where you can hear the other cancer patients—the coughs, the chatter, the pumps beeping—but not see them until you get up to find a bathroom. We’re walled off by windows on one side, and while it’s bright and a little hot, the light is nice. From here, we can see the 101 freeway, which we agree is admittedly less exciting than watching First Avenue from our folding dining room table back in our old Manhattan apartment. Both of us would love to go back and visit our old life, to walk down 14th Street together, hand in hand. But cancer makes your world small, so much smaller than your old life, and the prospect of a transcontinental flight for a pleasure trip in the face of so much exhaustion feels impossible. The place I most want to be these days, is just wherever Jake is. Even if it’s the hospital. We’re adjusting our expectations.
The nurse comes into the infusion cubicle with the pre-treatment medications. She pushes six different meds, including Ativan and Benadryl, which cause sudden psychomotor slowing. It’s like watching the batteries running down on a wind-up toy. Jake fights the wave of somnolence, and he starts to mutter. He asks the nurse about the coordinate tattoo on her arm. He closes his eyes and says he sees visions, patterns, but can’t clarify more. Are they psychedelic or dream like? Both? He’s not sure. He’s making some sense but is clearly affected by the meds. Suddenly, he opens his eyes, looks out the window, and says, “at least I have a good view from here.”
Then he starts to cry.
We’ve been doing a lot of crying. But the suddenness of it, the way it feels like the reality of the situation is spreading through his veins along with the sedative, breaks my heart. There’s not a moment when we aren’t aware of the sand running so rapidly out of his hourglass, but there are moments when we feel time slipping away more acutely. Did he cry during the first infusion? I think so. I could go back into my journal and look, tell myself that this is a medication reaction and not a sign of worsening despair (of course it is, his, and mine, as I’m crying along with him now), but I’m almost positive it is despair—how could it not be?
Chemo is so brutal, and for squamous cell carcinoma patients it is only “palliative,” in that it may extend his life but won’t extinguish the cancer. He’ll have more time to say goodbye but will trade the suffering from chemo for some months more. I hold Jake’s hand and kiss his face and look at his color in the bright daylight—which is sallow, but brighter than it’s been the last few days. He just stares out the window, glassy-eyed, and weeps. I squeeze my body against his to hold him firmly in the chair beside me. His Dad, who is visiting during the infusion gets up to hold his other hand, which is limp.
“You can give me a squeeze back,” his Dad says, because he needs reassurance, too. I’m not the only one. Jake squeezes. His Dad seems relieved, but not reassured. For a few moments, we both cling to Jake, as if we could grip hard enough to keep him here as long as we need him. When his Dad sits back down, Jake drops my hand and picks up his phone, holding it so only I can see. He can’t really speak any more, but he types:
“I’m ready to die, but not wanting to. Key difference.”
I don’t know if he’ll remember telling me after the Benadryl and Ativan wear off. That this declaration came after being disinhibited from the drugs, though, makes it likely that this is what he really feels. Strangely, it feels like a terrible, heartbreaking reassurance. Not yet, he’s telling me. But one day. Once again, I say nothing, but this time I do reach for him, and I hold him.
I think gently about all the people who have asked me to try futile, frustrating things to try to save the person they love; doctors may “know enough about modern medicine to know its limits,” but most people want to burst past those limits, though they can’t. I think about the way people look at me when I explain that there’s nothing more I can do to help, and anything I do will only to make a bad situation worse. I think about their anger and their fear. And for the first time, I think about the relief they must feel when I, not they, am the one who tells them that enough is enough. No more. They don’t have to be the ones to decide.
It doesn’t make them monsters to want to cling to hope past the point of sense, it just makes them human. It makes me human, too.
I’m both not ready for him to die, and I don’t want him to. But I don’t get to decide, either. All I can do is try to tip the balance in favor of the life he has, until Jake, or his disease, decides that it’s too much. Because the only moment when you can answer the question of how much suffering is enough, is the moment that it stops.
If you’ve gotten this far, consider the Go Fund Me that’s funding ongoing care. This essay is part of a series; click here and then scroll down for the others. See especially “On being ready to die, and yet also now being able to swallow slurries—including ice cream.”
Are you taking care of yourself?
This essay is by my wife, Bess.
“Are you taking care of yourself?” Francesca asks. It’s a fair question: my husband, Jake, is dying of a metastasizing squamous cell carcinoma. I say I don’t know whether I’m taking care of myself, and Francesca asks if I’ve gotten enough “me time.”
I think Francesca means: Am I sleeping? Eating? Bathing? I sniff an armpit, and peek down at my waistline. I’m down to 116 pounds, a weight I haven’t seen since senior year of high school, but my hair isn’t harboring small critters and I smell nice, like Dr. Bronner’s peppermint body wash.
I’ve heard the questions about taking care of myself before, but when well-meaning friends ask if I’m taking some time for myself—an analogue of asking if I’m taking care of myself—I laugh. My big concern is that I’m about to get way too much time to myself.
“I bet you look killer in a swimsuit,” Francesca says, to make me smile, not because she means it. She’s Italian, so what she really means is that if she weren’t 2,500 miles away, she’d force feed me pasta until I felt the full force of her calories and affection (which are the same). Only a select few people have asked “Are you taking care of yourself?” and meant it. Some know that my new figure is secondary to the stress and starvation diet I’d accidentally adopted when Jake’s tongue was surgically removed due to a recurrence of that squamous cell carcinoma, and they still say I look good from having lost weight.
Like it’s a consolation prize.
I defend myself to Francesca, saying, “Listen, not a single tooth has fallen out in the last three months, and it appears that I still have most – but realistically, not all – of my hair. Which has a white patch now.”
She makes a clucking sort of tut-tut sound, like I’m a simple child, and asks, “How can you take care of him if you don’t take care of yourself?”
Easily. I like spending time with him. I worry that, soon, he’ll either be killed by cancer or suffer so much that he justifiably chooses to exit. So many people have equated self-care with me taking some time away from the apartment, the hospital, the appointments—time away from Jake—that I get the impression a surprisingly large number of people don’t much like their spouses or long-term significant others. Being away from him, especially right now, isn’t a relief, it’s punitive. Francesca and I chat some more and she admonishes me to make sure that someone takes care of the “caregiver.” And then Francesca goes back to her life and I go back to reading, researching, trying to find some magical combination of medications or the perfect clinical trial that might save Jake. I want to fix. I want to find the right thing to do.
And, I believe, so do the people asking me the dreaded self-care questions. They are nice people who care about me. They want to figure out the right thing to do and to say. They also want to fix it. A clinical trial might help, but barring that, the best most of us can do is sit with the situation and be present. Sometimes, most of the time, there is no right thing to say. And that’s fine. Some situations suck and there are no words to make them not suck and there is nothing people can do to make them not suck. American culture infuses us with the desire to help and fix and suggest (things I’ve done too), but some situations can’t be helped or fixed or suggested away, and the hardest thing to do is to sit in discomfort with the truth.
On a recent evening walk with one of our closest friends, the day before that friend left to go home to New York, Jake said to him, “I’m sorry if I’m not very good at saying goodbye, but it’s my first time dying, I’m learning as I go.” It’s my first time doing this, too. At first I’m not sure what to say to friends who want to know if I’m taking care of myself.
Lately, I’ve been thinking a lot about what “care” means. When (numerous) hospital people call, they usually ask if I’m Jake’s “caregiver.” This translates, I guess, into wanting to know if I’m the person who makes sure he doesn’t pass out when he gets up to go to the bathroom after chemo, grinds his meds for his peg tube, and worries about keeping the areas around various post-op wires and tubes clean. They confirm that they can call my number to schedule appointments, review test results, and schedule delivery of medical supplies.
They’ve never asked me if I am the person who takes his hand in the dark while he’s sleeping and whispers to him that we’re connected forever by an eternal golden braid. He doesn’t have a tongue any more, having had a “total glossectomy”—which is medical terminology for “cut out the whole tongue”—meaning he can’t chew at all, or swallow normally. They never ask if I’m the person who burst into tears with joy when he learned to swallow again, a little bit, and managed to get down a pureed cookie a few days ago; he actually tasted the cookie with just the tastebuds left on his hard palate and esophagus. They’ve certainly never asked if I am the person who tells him that not only is he loved, but who gives him a solid grope and reminds him that he’s still very, very sexy.
You can hire “caregivers” online. It’s a job description consisting mostly of a hospital’s definition. I don’t think—though I could be wrong—that they provide a few of the services I render, but not the best ones, not the loving ones.
If caregiving is officially about physical and administrative upkeep—what do people think I, a person who doesn’t pass out when she goes to the bathroom, can swallow pills, and has no tubes to clean—need to do to care of myself?
What secret things do I need to whisper to myself in the dead of night to keep from falling apart?
Because that’s really what the question about taking care of myself is: What am I doing to make sure that I make it through this experience in one piece? For him, and for myself.
If the internet and well-meaning friends are to be believed, the well from which I give is running dry, but I’ll have more energy after a massage, a glass of wine with a girlfriend, a dinner out, a few hours a week in the gym to get some endorphins going, and a therapist. A therapist who’ll charge me $250 and hour to tell me I should sleep, get a massage, a glass of wine with a girlfriend, and exercise to get some endorphins going.
“No, you’re wrong, the therapist will help you figure out what it is you need,” one of my other well-meaning friends says. Well, what I need is for Jake to not die. And that is probably outside of the therapist’s scope of practice. But because I love this well-meaning friend, I say, “I’ll think about it.”
I think I find the question of “self-care” so absurd because no amount of meditation or yoga can or will change the fundamental truth: watching the person you love die means accepting that parts of you die with them. You can’t save them. You can’t save yourself. I will never be the same. I suspect accepting that truth is the most caring thing I can do for myself.
The night before Jake went into the hospital to have a massive surgery to remove his cancerous tongue (a surgery that involved splitting his lip and jaw in two, flaying his face and neck open, and replacing his tongue with a “flap” of tissue from his thigh), we got married. He was having debilitating headaches and I wasn’t convinced he was going to make it through the night, or through surgery; I’ve never been so relieved to see another human being as I was when I saw his swollen, anesthetic-addled face in the post-anesthesia care unit (PACU). Alive.
All I wanted to do was sit sentinel in the hospital to make sure he stayed that way. Not just as a physician (though being one certainly helps), but as his new wife.
For the first few nights in the hospital, a nurse came every hour to check the flaps’ blood supply. Nurses responded to call lights. Nurses made sure he had his meds. You couldn’t have asked for more attentive care, or a better nurse-to-patient ratio—especially with today’s hospital staffing. The point is, despite the platinum-level care, I couldn’t relax unless I was in the room—watching, waiting to see if he needed anything, and quickly.
For the two weeks after his total glossectomy, the nurses would tell me I should go home to get some sleep. His Ear Nose and Throat doctor, Michael Hinni, who is probably the most considerate surgeon I’ve ever met, told me that I wasn’t allowed to stay in the hospital 24/7, because I needed to get some rest. I needed take care of myself. There were those words again.
And yet, I inflated my Exped MegaMat camping pad and wedged it across the reclining chair the hospital provides for family to sleep on.* There, during the day, I could make sure Jake knew he had company. I could monitor meds and orders, I could talk to the doctors, I could double-check what was happening—even though the doctors and nurses were already keeping track of everything. At night, I could press a button to call the nurses if he had a mucous plug in his the tracheostomy tube (“trache”) and felt like he was suffocating. If I could only rest when I knew he was within reach, I wasn’t going to get any sleep at home. How could I, when I’d be wondering: what was happening at the hospital? Was Jake okay? What if he wasn’t? How does anyone think that the simple act of being physically distant from the situation makes the mental load better, not worse? Being there was taking care of myself.
Of course, the one night I was convinced to go home and sleep, Jake almost passed out alone in the bathroom, while he was attempting a stool “self-disimpaction,” due to constipation caused by the opiates he needed for pain control. The nurses apparently wouldn’t help with that, and didn’t stay in the bathroom with him; although it sounds like the butt of jokes, for someone just after surgery, self-disimpaction is a dangerous act. Knowing I could have helped was the end to further nights in my own bed. We want so badly to have control, and, while I didn’t think I could stop bad things from happening, I wanted to be there to stop them from being worse. It was for me as much as for him. Really, it was more for me.
I’m an ER doctor. ER docs are routinely expected to care for patients when they themselves are in labor. Or have appendicitis. Or have a fever of 102. Or are emotionally distraught from worrying that their husband is going to die. As long as you show up to take care of others, that’s all that counts in emergency rooms. Some colleagues asked how Jake was doing, and if I was okay—often in the kind of tone that assumed I’d respond in the affirmative. Because that’s an implied part of the job: being okay, even when you’re not.
I spent over a decade being expected to separate my personal needs from my ability to address the needs of others. That never appeared in employee handbooks but it was everywhere, a cultural miasma that seemed bizarrely opposed to what medicine is supposed to be about. I wasn’t used to the type of concern I was getting once I crossed the threshold from doctor to patient’s spouse upstairs. It was strange. Didn’t you just do what you had to do, and then push through the moment when you thought you couldn’t? Didn’t you dissociate? Isn’t that how you survive?
Near the end of the hospital stay, Jake and I watched videos describing how to take care of the various new medical devices Jake would need to breathe and to eat and to take pills. There was a video for caring for the trache. Another video for how to care for the peg tube, the peg tube being the tube that connects the outside with the inside of his stomach. For the rest of his life, he’ll ingest most calories through the peg tube. There was even a video describing how to carefully crush a pill using the plastic crusher (spoiler alert: twist to the right and don’t use your teeth, both of which also apply to beer bottles).
Jake survived the surgery and the hospital recovery, and I survived too. I’m writing this in August 2023, and we’re both at home, but the cancer has returned: at least four locally recurrent tumors in his neck, and possibly two metastases in his lungs. I don’t know how long Jake has, and part of the answer depends on finding a good clinical trial. Trying to find one of the better clinical trials is my self-care right now; almost no one survives long with what Jake has. Recurrent head and neck squamous cell carcinoma (HNSCC) kills. Chemo may give him more time, measured in months, but it isn’t curative. Nothing we have is. Barring a miracle that seems increasingly out of reach, he’s going to die.
So I find myself missing those simple, clearly digestible videos about trache care and peg tube cleaning and pill cutting. I wonder, where’s the video that tells you how to find the clinical trial that will put your terminal husband into magical remission? Where’s the video that tells you how hard it is to hold your husband’s hand when he says goodbye to his closest friends, one after another, for the last time? How do you to plan to have a baby he’ll probably never meet? How do you deal with the tears when you talk about cremation, because it’s relatively eco friendly, and getting a plaque on a park bench in New York City, so people have somewhere to go when they want to be with him? Why isn’t there a primer on how to say goodbye to him yourself?
The truth is, right now caring for Jake is mostly a matter of the heart and of logistics. In the month after surgery, and during the first week of his first round of chemotherapy, a lot of my attention was spent monitoring physical practicalities. Then, he improved. Before the cancer circus started, Jake was an energetic person—in the gym, riding bikes, taking long walks, extolling the virtues of the standing desk, working, learning, doing. For a dying man, he’s still surprisingly lively, and very much himself. The other day, for example, he moved a bike that had been living in our common room into his office, and when I asked what had happened to the bike, he innocently asked: “What bike?” And he continued to obstinately pretend not to have known about the bike in our apartment until I finally thought to check the office. He looked extremely entertained. This is normal Jake behavior, and I was equal parts infuriated and relieved by it. I should’ve known better by now and checked the office right away.
He makes me dinner in the Instant Pot, most often using the slow cooker setting. After peg tube feeds, we go on walks. We still have moments when we talk about ideas and books, and where we read together. We’re a book club hiding in a marriage. I cry a lot—I am what I am—and mostly, I spend the bulk of my day on the Sisyphean task of searching for clinical trials.
It’s good to have a project. Without something to focus on, I’m like one of those domesticated African Grey parrots who pluck their own feathers out for want of something to do. I try to do as many of these things within reaching distance of Jake. Even better if I can have a hand or an entire limb draped over him.
We are trying to carry things out the way we always have—together. Jake says he’ll make me dinner until he can’t. Both of us fear that the moment he can’t is coming, soon. I puree him pastries and call about clinical trials. I cannot feel more loved than when Jake hands me a bowl of lentil soup, and the act of eating becomes a comfort to me. I’ll be 117 pounds in no time. And, hopefully, he feels something similar when I get his name added to another trial waitlist and oversee appointment scheduling. Finding ways to take care of him is taking care of myself. And vice-versa. Being asked if we’re taking care of ourselves, is, in itself, a form of being cared for by others, from afar. I’ll try to hear less of the actual question and more the intent: We’re worried about you both. We hope you’re doing as well as you can, day-by-day, until the darkness takes him.
So now, when I’m asked: Are you taking care of yourself? I’ll answer, honestly, “no.” This isn’t the time for self-care; I have decades of that in front of me. We’re caring for each other.
If you’ve gotten this far, consider the Go Fund Me that’s funding ongoing care.
*If you’re never slept on one of these chairs, know that they’re terrible, and they’re also ubiquitous. Eventually in your life, you you’ll probably sleep on one, for tragic reasons similar to mine, and, when you do, realize that the one un-padded area is the one where you hip will land if you try to sleep on your side. But the camping pad, along with a blanket wedged underneath the parts that dip, turn those chairs into a passable sleeping surface. Try to remember this information, because the most important thing is that this sleeping surface will be five feet from the person you love most.
What it’s like to be married to a dying man
My wife, Bess, wrote this. For more context, see “I am dying of squamous cell carcinoma, and the treatments that might save me are just out of reach.”
Jake is sitting on the couch beside me when he asks, “What’s it like being married to a dying man?” At first, I think I’ll be able to answer easily. I’ve been answering it implicitly for the last seven months, although I didn’t really know he was going to die, soon, until Friday, July 21—three days ago. I’ve been keeping a journal, so I’ve had a place to record the difficult, confusing, and sometimes banal details, like the pitch of the feeding tube beep, the smell of the hospital rooms, the myriad of administrative frustrations. But when Jake asks me what it’s like being married to a man who won’t be here in six months, for his 40th birthday, I’m speechless. I open and close my mouth a few times, because “what’s it like?” isn’t just about loss, although it partially concerns that, and it isn’t about regret, although that’s part of it too—and many other intrusive thoughts find their way unbidden into my stream of consciousness.
“What it’s like” is: it’s like gaining enormous, terrifying clarity. The moment when you realize the right path, the yes or no answer, the end of the debate. Clarity might sound great— don’t we all want clarity? But clarity is cruel, too. We’re fond of illusions, and we’re fond of fictions, which are themselves a sort of illusion. We lie to ourselves about how attractive, capable, intelligent we are. Staring into the face of what matters means reconciling with all the time you spent focusing on what didn’t. And it turns out, that was a lot of time. Why was I watching TV? Browsing Instagram? Holding my phone instead of a person? Fighting the silly fights? Prosecuting pointless arguments? Clarity shows that love matters, as does recognizing love, so that you can nurture it and appreciate it. Romantic love matters, but also friendship love. And yet so many of our daily behaviors and practices are antithetical to these clear, high-level principles.
With clarity came the realization that I’d done a lot wrong—time spent, for example, not recognizing love because I was nursing my own wounds and chasing some kind of made-up ideal, would be the great regret of my life, if I chose to carry it.
I’m an ER doctor, so I’m used to delivering existentially bad news, but no one I’ve given a life-threatening diagnosis to has turned to me and said: “I wish I’d held onto my grudges. Maybe one will come visit me in the hospital.” I’ve seen a lot of people die, or learn how close they are to death. The things they say and regret tend to be similar: not being kinder or more loving, not mending broken friendships and family ties, spending so much time at work (where I am, when they tell me these things). No one says: “Doc, I should’ve spent more time pursuing petty grievances.”
Clarity removes the opaqueness that leads to misunderstandings. How do we ever know another person? How can we? One woman in a Facebook group reported that, after a five-year cancer bout, her husband was dying and she’d never really loved him and he didn’t know (she didn’t think he knew). What do you do with that? What was her life like? How did it take her so long to reach that conclusion?
My perspective is the opposite of that woman on Facebook: I really really love Jake, and now he’s being taken from me. For 15 years he’s been the greater part of my world. I used to think we couldn’t know another person. But in the last few days, I realized that much of what I have come to believe about both Jake and myself are true. We are human. So we’re petty and small and easily irritated. We too often resemble gerbils or hamsters in too small or too befouled a cage. We too often choose the wheel instead of the larger universe.
But we are also capable of profound intimacy and love and awe at another person. And I realize that, when I look at the measure of our almost 15 years together, it’s the angels of our better nature that’ve won. It’s a gift to sit with your regrets, and realize that they are not important. You can put them down. The future I’m walking into will be heavy enough without the extra baggage. And anyway, I don’t believe in checking bags.
Clarity after someone dies isn’t, I think, all that uncommon. Innumerable TV shows and novels explore what people do when faced with an unexpected loss that causes them to take stock, usually as it applies to their own life moving forward. Posthumous clarity focused only on yourself is like holding a bag you can never truly unpack, and the person motivating your change is gone, and only half the contents really belong to you. It’s a story with only one real hero, the person left behind.
But clarity when someone is still alive, when you have the gift of some time, is the most difficulty and incredible gift I have ever received. You’re not looking at yourself. You’re looking into the eyes of the other person, and seeing them, as well as yourself. And if you’re really lucky, you find that there isn’t much of a difference anymore.
So when Jake says to me “I don’t want to leave you,” I tell him, “You can never leave me, because I have parts of you that I will never give up, and that is what fills the spaces left by the parts of me you have taken.”
I don’t want those parts back, because they don’t belong to me anyway. Those, he takes.
I’m not the hero of my own story. He is. So are my parents, my friends, and the people who are going to make sure that I am carried forward into a future I cannot actually imagine and don’t yet know how to navigate. It’s not about me, it’s about the network I’m embedded in. Trying to look into that future feels like looking into a haboob—a dust storm that we get here in Arizona, that turns everything from earth to sky into one solid, brown, inviolable wall. I don’t know how to find a path through that storm in a world where Jake isn’t here. Mostly because I can’t find my way out of a paper bag, having no sense of direction or geography, and still rely on Jake to guide me when we walk to the same corner drug store we have been going to for the last three years.
He is still sitting next to me while I type this, typing on his own computer, and we are reading over each others’ shoulders the way we have done for the last 15 years. The present is hard, but the path is clear: wake up, spend time with Jake, sleep, repeat. Past that? In the future? Who knows.
Being married to a dying man inevitably, cruelly, means that one day soon he will be dead. I don’t really believe it, but he won’t be here beside me to edit another essay and run ideas by, go on walks at night and try to catch the lizards that hang out on the stucco walls of our apartment building, read to me before bed, pet my head when I’m anxious, and smack me on the ass when I’m climbing stairs in front of him, and yet, somehow, impossibly, I’ll still be here. Jake won’t be. The world will keep moving whether or not I feel like screaming for everything to stop. When that time comes, I will have help. My friends, my family, my network, my people: I’ve learned to quit being stubbornly independent and let people help me. But mostly, I will look inside myself, and find Jake still there, and once again he will help guide me to find my way.
If you’ve gotten this far, consider the Go Fund Me that’s funding Jake’s ongoing care. We’ve also written a number of other essays, including “Turning two lives into one, or, things that worry me about Bess, after I’m gone” and “Attachment is suffering, attachment is love.”
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