i. Enough
The first time Jake said he was ready to die, we were sitting in the chemo infusion center at the Mayo clinic. It was July 2023, just two months after the barbaric total glossectomy that was supposed to cure his cancer by brute force in the form of cutting it out. He couldn’t speak or swallow. He’d never eat normally again. The tumors, aggressive and multiplying, had already returned, forming the noose that would gradually tighten around his neck. He was ready to die, he said, but didn’t yet want to. I sat beside him, watching warm light from the large windows illuminate the oily chemo running into his arm, the chemo that was making him ill while simultaneously creating a path to more time, and I wrote an essay: “How much suffering is too much?”
Almost a year to the day later, I have my answer: The amount of suffering Jake has experienced in the last two months. This much suffering is too much.
For the last two months, the life that Jake and I have fought so hard for, that had finally started to resemble something physically endurable, even sustainable, has crumbled. On June 10 and 12, Jake got doses of spot radiation, meant to ideally finish off the tumors in his neck. His most recent clinical trial drug, PDL1V, in conjunction with two earlier doses of spot radiation in April, had astonishing effects—literally liquifying the tumors in his neck. Jake recently wrote about our fool’s hope that if two doses was good, four would be better. We were tantalized by the possibility of a complete response, by the possibility of a future together measured not in months, but years.
Instead, Jake passed some invisible non-linear threshold during those last two doses of spot radiation. It was as if a switch flipped, causing a cascade of side-effects that led to the wholesale destruction of Jake’s quality of life: his throat became an endless factory of sticky mucous that blocked his airway, his neck swelled and the skin became woody and rigid, stealing the last of his already paltry range of motion, so that he can’t tip his head back. Eating by mouth, something he was able to do so well that we’d removed his feeding tube in January, once again became impossible. Every time he tried to eat he’d aspirate. He’d choke for minutes, accidentally taking food slurry into his lungs, and then would try again, and then again, futilely and frustratingly repeating the impossible process. His weight plummeted over twenty additional pounds. Sometime in June Jake acquired a serious pseudomonas pneumonia infection, which remains uncured as I write and which he’ll die with.
On July 1, the feeding tube whose removal marked a return to semi-normalcy had to be replaced. The hope we’d so doggedly clung to for this past year also started to be destroyed.
Now, whenever Jake tries to drink a little melted ice cream and aspirates, he says he wants to die. When he looks at the scale and sees it tip downwards to 117, even with the feeding tube, he says he wants to die. Except he can’t exactly say it, because the lymphedema in his throat has taken his voice, so he types it using voice to text and the dispassionate computerized voice tells me that he wants to die. He texts me at work that he wants to die, and I slip into the ER staff bathroom, allowing myself thirty seconds to cry before splashing water on my face and going to take care of people who aren’t the love of my life. I awaken with him five, six, seven times a night, when gobs of mucous seal off his airway. He stands, eyes wide, mouth open, chest rising and falling without the transit of air, I slam my hand against his back, again and again, not making any progress, helplessness washing over me as I wonder if this is it, until his face pinks and he makes a motion with his hands that means enough. He’s had enough.
Jake wants to die.
I don’t want him to.
ii. The borderland
“Not dying” is not the same as living. And Jake’s been existing in a liminal state between the two since June 12.
I’ve done everything I can think of to tip the balance towards living. I’ve read medical papers, gotten specialist consults, begged for support in trying to find solutions and ameliorations. It’s not overstating to say that we’ve tried almost everything: Various inhaled mucolytics to break down the mucous plugs, chest physiotherapy, variations on variations of different nebulized medications, high-dose steroids, antibiotics (he’s on his fifth) for the pseudomonal infection, esophageal dilation, ENT scopes, Botox to the muscles of the neck and head, trigger point injections, physical therapy, massage, fascial release, antifungals, morphine, gabapentin, muscle relaxants. I’ve come up with on-label and off-label treatment plans, enlisting the prescribing powers of colleagues willing to assist.
We’ve made small gains, but not enough, or at least, not fast enough. After so much trial and error, it’s cruel that we can finally see the glimpse of a way forward, now that it’s too late and he’s too weak.
Despite how dire things seem, I’m stuck on the thought that since Jake has been brought back from the brink so many times, maybe more research and more effort will do it again. Can’t I help him get stronger? Help him feel better? Coordinate a deus-ex machina? But my impulse to solve the unsolvable, an impulse that has served us so well, won’t solve the human condition. My hope is a desperate, clinging hope.
My job as an ER physician has made me uniquely familiar with the border between life and death, but always as a doctor, never as a wife. I’ve managed the emotional burden that comes from being present for so much death by reminding myself that the grief belongs to the patient’s family, not to me. Except now, the grief is very much mine. Even while Jake is still here, the anticipatory grief claws at me like a scared, feral animal. Nothing feels familiar anymore. Everything is disorienting. Jake will die, and how long will it take to find some new normal? Years?
I’ve seen the way existing in this borderland blurs the fine line between healing and futility for patients and families, until it’s unclear what treatments lead to improvement, or only further fuel suffering. Sometimes it’s obvious, like when adult children request CPR and intubation for elderly, demented parents who “live” all day motionless in a bed, kept nominally alive by interventions that won’t allow them the dignity of death. But, especially for younger patients like Jake, who have the possibility of a generative future before them, medical futility isn’t always obvious. Not until it’s too late. Jake agrees it’s so hard to identify the line between stopping just barely too soon, and continuing on too long. Still, when my guidance misses the target, I feel guilty at not being able to see the future. In these moments, which accumulate as Jake’s condition worsens, I think I should have been a better doctor. I think I should have been a better wife. Intellectually, I know there are no villains in our saga except for the cancer.
iii. Doctors and wives
The problem with being both a doctor and a wife is that I can’t turn either identity off, despite frequent exhortations that I should release my medical role and focus only on being a source of support and love. My love for Jake and my ability to manage and oversee his care have kept him alive. Even recently, my vigilance and understanding of the system helped to discover that Jake was placed on antibiotics which his lung infection was resistant to. Love alone wouldn’t have done that. Medical knowledge alone, without the motivation of love to double and triple check things, either. Together, they helped us get this bonus year that has given us so many gifts: of time together, of making art together, of not leaving things unsaid.
Focusing on the clinical hasn’t just helped Jake, it’s helped me as well. It’s prevented helplessness. I could focus forward, generating momentum and problem-solving instead of just wallowing in fear and uncertainty. But Jake’s tired. We’ve tried what we’ve tried and now there are no more calls to make or trials to attempt. There are medications to mix, but with comfort, not cure, in mind. There’s no doctoring to buffer me from just sitting with the truth: I wanted to solve his problems, to keep him going, to convince him that he is well enough to enroll in HonorHealth’s TScan clinical trial, despite the infection he’s had for six weeks that has laid waste to him. And I couldn’t do it. Neither could his medical team, but that’s no comfort. The last year of research and coordinating care were comparatively easy. Now is the hard part: to just be the woman who loves him, to hold his hand, and then let him go.
iv. The end is the only option
There’s a keening noise that Jake makes when he’s in pain, or struggling, or struggling and in pain, which is now almost all the time. It’s a thin, high sound like a tired, wounded animal. I feel the sound reverberate in my body when he makes it, as if I’m an echo chamber of his misery and his grief and yet still I want him here. I want miracles. I can’t perform miracles.
I’ve spent a year thinking about, and writing about, what it’s like being married to a dying man. I’ve spent most of that time vaguely imagining a future without him, while doggedly focusing on trying to prevent that fate. Though the time is here to let go, I’m no closer to understanding how.
v. Grace
It’s the night of August 3 and Jake and I are sitting together on the gray couch in our living room, clinging to each other. Or, rather, I’m clinging to him, hard, and weeping while he holds me much more gently. I imagined I’d face the end with more grace. That I’d let go out of love. That I’d give the hard decisions, finally, some ease. Also, that I’d weep less, or less volubly, or less openly. I imagined, I guess, that I wouldn’t be myself. Jake knew better all along, and even now he comforts me.
“I’m trying,” I tell him.
“You know I’ve tried, too.”
More than anyone could have been expected to.
“But I’m pain,” Jake continues, “I’m nothing but pain and will be until I don’t have to be anymore.”
“Am I the reason you have to?” I ask. He waves his hand, “no.”
“I wanted to try,” he reassures me. “But even with some improvements, the problems have compounded. I don’t see a way back to a meaningful life.”
“I want to be a peaceful presence,” I say, sobbing very unpeacefully. “I don’t want to make the time you have left worse.”
“You’re not,” he says, smirking a little. “Being a peaceful presence, or making the time I have left worse.”
You can’t escape death, or who you are. I’m emotional and stubborn. I’m prone to panic and perseveration. I’m definitely prone to tears. “You’re good,” Jake types on the computer screen, meaning it in so many different ways, “There’s no one else I’d rather spend this time with.” He loves and accepts me for exactly who I am, even when I don’t accept myself. The best opinions of myself live in Jake. I take a photo of his computer screen, so jake’s best opinions of me can live in my phone, too.
I keep crying. I cry over losing the man I love. I cry over losing almost everything we’ve built. We’ve created so much together: a home, essays, ideas, and most importantly, a new life. I’m seven months pregnant with our daughter, Athena.
I can’t wrap my head around the idea that Jake won’t meet her. I can’t imagine why I ever thought my internal war between wanting him to have peace, and wanting to have more time would ever be resolved quietly. When has love, messy and desperate and deep, ever been quiet?
vi. Letting go
There’s a bottle of Ativan and another of liquid morphine, sent over by hospice, on the bedside table. Earlier this week, Jake emailed the primary investigatorss for the two trials that were holding spots for him, and told them that there would be no trial. That, even more than enrolling in hospice, felt like the final, inviolable act.
“It’s really over,” Jake asserts.
“I know,” I say, finally meaning it.
“I’m too broken.”
Though I say yes, I see it, too, when I look at Jake I still just see Jake. I still see the man I love, no less than he has ever been. But I’m also not blind to his suffering and the way it leads to nowhere: I can count his ribs, his vertebrae, the tumors that are breaking outwards through his skin, asserting their presence. I touch them gingerly, feeling the swell of them, reminding myself they’re real. Between us, my belly swells outwards, Athena asserts her presence, too. Somehow, I always thought we’d squeeze out more time.
“I wouldn’t still be here if it wasn’t for you,” Jake tells me. He means that he wouldn’t have lived this long without my efforts, but also, that he wouldn’t have chosen to continue living this long if it wasn’t for me as well.
Whether I am ready to let go or not, I am going to.
Jake has written that he has the easy part: all he has to do is die. I have to go on living, filling the future stretching out before me with something else—with someone else.
Jake puts down the computer he’s using to speak with me and rests his forehead against mine. He closes his eyes and splays his fingers across my belly, pressing gently. Our future kicks back beneath the broad, warm expanse of his beautiful hands.
If you’ve gotten this far, consider the Go Fund Me that was supporting Jake’s cancer care, and which is now supporting our daughter Athena.
