Forever is such a short, long time

Jake and I get married the night before a surgery he might not survive. When our lives are so short, what does a promise of "forever" really mean?

Jake and I look at each other and say, “I will love you forever.” But Jake is dying of a squamous cell carcinoma, so while “forever” is supposed to be a very long time, our actual time horizon is so very short.  

We married on May 24, 2023, the night before a huge surgery that was supposed to cure his recurrent squamous cell carcinoma of the tongue. Our impromptu wedding was in the courtyard of our apartment building, beside the empty pool, and underneath a second-floor stranger’s patio; we’d chosen the spot because those neighbors had fairy lights strung up for ambience. In the background, in lieu of a string quartet, were jokes and distorted laughter from a drag queen hosting bingo across the street at an open-air bar called The Hot Chick. Our friend-slash-quickly-ordained-online-officiant Smetana had to raise her voice to recite the ChatGPT-composed ceremony (she did a beautiful job).

We didn’t have rings to exchange because we hadn’t yet bought any: Jake’s surgery had been scheduled for June 8 but was moved up, probably because his surgeon, Dr. Michael Hinni, thought Jake might not make it to June 8. I worried about the same issue, because Jake was getting visibly, alarmingly worse day by day. I’d been watching him, as a doctor and wife, and I didn’t know whether he’d make it through the surgery (or the night).

I’m an emergency medicine physician, so I recognize too well the signs of being dangerously ill: 30 pounds had melted off Jake’s six-foot-one frame, leaving him weighing an emaciated 135. At night he had apneic episodes, his breath stopping so long that I couldn’t catch my own until his chest heaved, and he gasped loudly, his mouth opening and closing in a silent “O”, like a fish thrown onto land. The more tenuous his grip on corporeality became, the more I stayed within arm’s reach, as if the only limiting factors to successful medical intervention were speed and proximity. If I could just get to Jake quickly enough when something went wrong, maybe I could keep him alive. But I’d seen too many patients die while I did everything I could to know, logically, that I could save Jake through proximity. Knowledge didn’t stop me from needing to superstitiously believe I somehow could.

Ours was a shotgun wedding, but the gun was inside Jake’s head, and we weren’t sure how long we had until it fired. Although the tumor was at the base of his tongue, it was somehow causing crushing headaches that worsened throughout May. I couldn’t figure out the anatomic reason for the headaches, and so my catastrophist’s mind (a side-effect of being an ER doctor, trained to rule out badness first and ask follow up questions later) went to the worst case scenarios:: were cancer cells that we somehow didn’t see on MRI growing in the meninges of his brain? Were the tumors growing exponentially, doubling or tripling in size since we got the imaging, pressing on the blood vessels supplying his brain, or cutting off the normal flow of cerebrospinal fluid such that the pressure in Jake’s head mounted noticeably each day? When the headaches advanced Jake became shaky, his usually sharp thought process lost the thread, and he’d turn inwards, as if internal pain was replacing external reality.

In my line of work, I was more used to delivering than receiving bad news: the CPR didn’t work (it almost never does), that limb needs to be amputated, the CT scan shows a suspicious new mass. The morning of our semi-spontaneous wedding day, I’d worked a full and busy ER shift, during which I’d diagnosed a woman with a new, malignant salivary gland tumor. I had to tell another patient that his bladder cancer, in remission for years, had spread to his bones. As I described next clinical steps, my eyes lingered on the patients’ spouses, seeing my now-familiar grief reflected back. I asked if they had questions, knowing that the questions they really wanted answered—why is this happening? how do we live in the time left?—were the same ones I asked myself and for which I had no answers. The husband of the man with bladder cancer wept and smiled apologetically. “You can’t possibly know what this is like,” he said. “We’ve been together for so long.” I took his hand and nodded. Having recently sat where he sat, I knew what he said was true: grief might be universal, but that doesn’t mean that we don’t cling to the isolating uniqueness of our own loss.

At our improvised altar, I wore the in-case-of-emergency-elopement dress that I’d been saving since college (a knee-length vintage lace). While I’d never been sure how or when I’d need it—I had certainly never fantasized about this exact scenario—it felt perfect and right, despite everything going wrong, standing there before Jake, holding his hands, in love with a man who I wasn’t sure was going to be alive the same time tomorrow. Though we’re both writers, the only other words we said were “I do.”  There wasn’t time to write vows. Besides, what promises could we make to one another that we weren’t already living? 

Esther Perel once said in a New Yorker interview that

“[Love is] a verb…. It’s an active engagement with all kinds of feelings – positive ones and primitive ones and loathsome ones. But it’s a very active verb…. It’s not a permanent state of enthusiasm…. I practice [it].”

Long before the wedding that gave legal standing to our long-established state, we’d made love a constant practice. Since finding out that Jake’s cancer returned, he’d been spending his days trying to prepare, should he not survive: hard drives with 15-years-worth of the photos he’s taken (he’s our life photographer), emails, passwords, writing, letters, videos. I spent every hour I had searching the medical literature, finding second opinions, scheduling appointments, and trying to unleash as much clinical expertise (mine, others’) at the problem as I could, in the search for the right answer to the question of how to get more time. Jake prepared for his death as I prepared to keep him alive. This is how we acted on our promise to love. Our love as a verb. Now, in marriage, we were promising each other time that wasn’t ours to promise.

“I’ll love you forever,” we said.

What exactly were we promising?

I flung myself at Jake even before our officiant could pronounce us husband and wife. We kissed in the soft pink glow of the portable video light Jake had brought outside for the occasion. I didn’t know it at the time, but that kiss would be one of our last that he could feel normally; his surgery would split his lower lip, travel down, and then break left, severing nerves along the way. Love, in action, also meant throwing my body at him. Holding him. Trying to memorize the way his soft curls felt under my hand that night as I stroked his head gently while he slept an opioid sleep.

In the following months, love consisted of actions I’d never previously considered: Holding Jake’s hand after surgery when he was told that not half, but his entire tongue had to be removed to get all the cancer out. Then telling him again, and then again, because anesthetics and pain medications shredded his short-term memory; that he didn’t and doesn’t remember much of the time in the hospital seems like a blessing. Sleeping on a semi-reclinable chair in his hospital room and commuting downstairs to the Mayo emergency department for shifts, even though my heart remained on the surgical recovery floor. Learning to suction a tracheostomy and care for a peg tube. Trying to make Jake feel more love than he felt despair—something I could only do in the hopes that it was enough, because I didn’t know what, if anything could be enough—so that his urge to remain in the world outweighed his desire to abandon it. He told me later that, in those first post-surgical days, he felt like he should be dead, not technically alive. It seems possible that some people can will themselves to die, or abandon the desire to live sufficiently that they enter the void.

Our friend and speech pathologist Jessica Gregor assured us that there could be a future when Jake could speak again, swallow, maybe even taste. “It won’t be like this forever,” she said, “these are skills he can learn again.” But skill reacquisition takes time. While Jake might “get there,” as she put it, Jake could die of a recurrence before getting there, wherever precisely “there” was. If that happened, then Jake’s deficits would endure for the rest of Jake’s life. After, I suppose, they’d no longer be deficits.

Despite knowing the risk of recurrence was high after the May 25 surgery, we’d been living with a focus on a future measured in decades. This wasn’t entirely delusional: we had based our long-term orientation on the good news of clean surgical margins, the 20 – 30% odds that he would be a responder to the immunotherapy drug pembrolizumab (“Keytruda”—in some patients, it can provide a durable response measured in years), the promise of four to six rounds of chemotherapy to sterilize the post-operative field of any errant cancer cells, and an estimated 50% chance of being alive in five years, per Dr. Hinni. This was the timeline we’d inhabit, and, if there was a multiverse, well, best of luck to our doppelgängers, who would have to take the other road.

The morning of July 21, 2023 we looked at a house we might buy, since the cost of rent was not so far off from the cost of a mortgage. After, we stopped off at the Mayo clinic for a CT scan of Jake’s jaw, neck and chest to evaluate his post-operative bone healing and see if he was cleared to use a jaw-stretching device called the Ora-Stretch. Then I had an appointment at the fertility clinic for an IUI procedure, to increase our odds of conceiving. Few actions underscore the expectation of more years together than being artificially inseminated.

“Forever” needed a place to live. It also needed a couple of babies to properly fill the space and the time. If love is a verb, then its ultimate action is making more of itself. A major purpose of consciousness, if not the purpose of consciousness, is to spread the light of consciousness across the globe and universe. Love begets love, in so many ways. Given everything that was happening, “forever” felt urgent in a way that seemed at odds with a concept meaning eternal or infinite. How can you rush infinity when there’s nothing to rush towards but more infinity? How, unless the timeline of forever is measured on a human scale, really just meaning the entire length of our tiny lives?

The late afternoon of July 21, a message alerted us to CT scan results. Jake’s jaw had healed! But, more importantly, his cancer had also already recurred in four new places in the neck, and likely metastasized to the lungs. Two months: that’s what the debilitating surgery and the immunotherapy had given us. Two months. The odds of long-term survival in the setting of a metastatic recurrence after salvage surgery in the literature is, currently, near 0%, unless the patient is a statistical outlier who responds to pembrolizumab. But Jake had started pembrolizumab in May, right before his surgery. He’d gotten a couple of rounds between then and July, and it seemed to do nothing. If anything, I wondered if it had spurred on hyperprogression. The KEYNOTE-048 study, considered a recent landmark that changed the standard of care from a platinum chemo regimen plus an EGFR inhibitor called cetuximab, to a platinum chemo regimen plus Keytruda for squamous cell carcinomas of the head and neck (HNSCC), improved the overall time of survival by just four months on average. Four Months. That was groundbreaking and a huge deal in the HNSCC world.

After the news of recurrence and metastases, we measured our probable time together in weeks to months. I felt like the promise I made on that small patch of grass, with a scraggly snaggle-toothed poodle mix acting as flower-dog, to love Jake forever couldn’t possibly be a promise made on the time scale of a single human life. I’m not ready to give that love up, not so quickly, not ever. “Till death do us part,” hadn’t even been part of our wedding ceremony, because Jake and I have shaped each other so deeply, become so entangled, that the influence we’ve had on each others’ minds would be impossible to sever without doing deep, lasting damage. Parting, at this point, feels a little like trying to separate conjoined twins. If they share a vital organ, separating them is too high-risk for surgeons because both are likely to be destroyed. Jake and I don’t think at each other, we think with each other. The thought of losing that—of losing my mind—terrifies me. Yet it is almost certain to happen soon. Chemotherapy is at best palliative for recurrent and metastatic HNSCC. As of this writing, it looks like Jake is going to start a promising clinical trial, but most promising clinical trials for HNSCC buy a few months. It could be that we’re on the verge of a revolution in the HNSCC field, but more likely than not, Jake will die before that day arrives, andour hopes won’t be fulfilled.

The human brain is gelatinous and animal, architecturally unable to understand the concept of “forever.” Forever. It’s nice poetry. But the closer I get to meditating on the idea (and I’ve tried a lot recently), the closer I get to a cold, alien panic. I don’t have the hardware to understand that scale. I don’t wholly know what our promise to love each other forever really means, only that I mean it. I still think we’re good for it, like signing a legally binding document in a foreign language.

Forever is a cultural obsession. Fairy tales end with “happily ever after.” Rom-coms end with the wedding (and the assumption that it lasts, which is bold, given divorce rates). The Lord of the Rings may have a better take on the word: when Aragorn tells Treebeard regarding one of the Ents’ deeds that “never shall it be forgotten in Minas Tirith or in Edoras,” Treebeard replies: “Never is too long a word even for me…. Not while your kingdoms last, you mean; but they will have to last long indeed to seem long to Ents.”

The generally agreed upon litmus test of a couple’s success, really, is longevity. Even if an experience was good for personal growth and overwhelmingly positive while it lasted, if it ends, it’s a failure. Never mind if a marriage is happy for fifteen years before one party decides to join a nunnery, or if a business thrives for a decade before it loses market share, or if the marathon runner makes it 24 miles. The marriage failed, the business failed, the marathoner failed to make it. There’s little room to celebrate change, or even celebrate recognizing sunk costs and giving up. One party’s death in the setting of a happy marriage is the only acceptable end that isn’t considered a failure. Although, doctors have said Jake has failed surgery, and failed treatment, as if it was a personal shortcoming, so maybe simply being human is a setup for failure.

A Facebook friend recently posted, mourning the break-up of a year-long relationship. The relationship had failed, she wrote, and she didn’t fully understand why. Things had been happy for a while, and then, they weren’t. She was grieving. In a lot of ways, a sudden break up—the loss of someone with whom you spent much of your time and planned a future with—is a bit like a death. Granted, I say “a bit,” because they’re still breathing, and so it’s possible, however unlikely or unrecommended, for a reconciliation to occur. It’s not considered complicated grief to expect that one day, the person you miss might walk into a room and walk right up to you (though they might do it with their new girlfriend on their arm, which causes a different set of unhappiness). Still, it’s a huge loss of the life you thought you would have, and I’ve been sensitive to that feeling lately for obvious reasons. So when, at the bottom of her post she asked her coupled friends, “how do you form a love that lasts with one person?” I answered. 

You don’t. You form many.

I’m not speaking of polyamory; I’m speaking of the changes that occur in everyone with time. Although there are some consistencies with my personality, I’m not the same person I was 15 years-ago, and neither is Jake. Love changes all the time because we change. We’ve chosen—we have practiced—loving each other through all the people we have been: I’ve loved Jake at 25, when he was uncomfortable with intimacy (a childhood hangover), and at 30, when his thirst for novelty blossomed, and at 39, when he is mature. Today he is emotionally open and aware, with a patience I wouldn’t have thought possible a decade ago.

No one single love lasts, but many love stories with the same person can. Heloise and Abelard are still with us. With a long enough time span, “forever” really means a constant cycle of endings and beginnings. A promise of forever isn’t a promise of immutability and stability. It’s instability with a death grip on the other person, holding on through all the stupid and thoughtless things we do to each other, and all the horrible ways that external forces—like cancer—ruin our really lovely plans.

Jake and I have been together almost forty percent of our lives, and most of our adult lives. We’ve practiced the loss and rediscovery of each other so many times (we’ve gotten really good at it), yet nothing in our previous metamorphoses prepares us for the final loss. I’ll lose Jake again, and he’ll lose me. I won’t have him here to help me connect to who I’ll become, or reconnect with him in new ways after I become that person. I’ll have to rediscover myself, not in relation to Jake, but in some new, presently inconceivable way. I’ll evolve as he remains static, death rending it impossible to add to the panoply of Jakes I’ve known. Without new Jakes, will I outgrow our love and break my promise to love him forever? Will I hold on too tightly and not move forward at all? If I don’t evolve, then I fail to move forward, but if I move forward too quickly, will I fail to keep hold of Jake? Sometimes both outcomes feel inevitable, and neither do, and then I wonder what kind of a person isn’t sure. Jake tells me to keep growing and evolving. He says I won’t be lonely. He tells me to find love again. It’s probably futile to worry that I could walk into the future without knowing what Jake would think of it, say about it, and write about it, even if I tried, whether he’s here or not.  

Maybe I’ll find ways to rediscover Jake by seeing our many relationships through my own changed eyes, finding each other again as we always have. And if I can keep loving him for all the people he has been, I hope I will be able to feel him loving all the people that I will still become.

The answer could be: a love that lasts forever is a love that’s constantly evolving in ways we can’t anticipate, define, or even understand until it happens. Maybe, I think it my darker moments, it doesn’t happen that way at all. Maybe it’s not for us to understand. Which is just such a raw deal.

“Being corporeal is terrible,” I say to Jake as I lie in bed, clinging to him to keep from being knocked over by one of the sudden, cresting waves of anticipatory grief that threaten to drown me at irregular intervals.

“I don’t know,” he says, petting my head gently, “The long walks were great. The last dinner at Atria in November was great. The sex was great.”

I smile.

“You can’t enjoy any of those things without a body.”

“You’re right,” I say, cuddling up to his body, warm and comforting. “But I wish the conditions were different.”

The problem with being temporal is that, inevitably, you’re temporary.

Despite us being temporary, we’re so lucky to have each other here and now. Living, with the foreknowledge that we’ll never make it out alive, isn’t the ultimate human definition of failure, but a testament to resilience. When people tell Jake his attitude in the face of dying is astounding, he recommends Stoic philosophy and says “I could choose to disconnect and be angry and spend every day miserable and then be dead. Or, I can try to do the best with the time that is given to me, and then be dead. The only thing I can control is my attitude.” He’s fond of reading The Daily Stoic. Because this is Jake, and because, in our home, The Lord of the Rings acts as our quotable, secular Bible, it sounds to me like he’s riffing less on Marcus Aurelius and more on a passage where Frodo says to Gandalf:

“I wish it need not have happened in my time.”

“So do I,” said Gandalf, “and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.”

Gandalf is a stoic philosopher.

I’m not a biochemist working on radical life expansion to help solve the problem of death. As things are now, loss and grief are the inevitable outcome of love, the very thing which makes life worth living. One cannot exist without the other. Even if my own time continues, the time that was given to Jake and I as a couple will end soon, at the age of 39, and not at 80 after a long life together.

A few weeks ago, I finally bought wedding rings. They’re simple, beautiful gold bands. Jake asks what they symbolize, and when I tell him they represent our promise of forever, he says (and this is a very Jake thing to say): “But there’s a hole in it.”

“Yes,” I say, and then counter, “But the ring is a continuous, infinite circle.”

“With a hole in it. Can’t the love just slip out through the hole?”

“And go where?”

“Somewhere? Everywhere?” he says.

Does love somehow slip out and away? I don’t think so, but Jake’s mischievous comment makes me think about how a ring can, from one perspective, go on forever, and from another, be quite small. Measured against the length of our tiny lives, forever is such a short, long time.

Soon, Jake will be dead, and I’ll still love him. Even so, we aren’t experts at loving. Who is? Every day we’re choosing to practice love with the time we have left: we read side by side on the couch, write in the same office, take short walks, leave nothing unsaid, and plan together a future he won’t be in. Right now. Forever has to be right now.

If you’ve gotten this far, consider the Go Fund Me that’s funding Jake’s ongoing care. You can also read Jake’s perspective (and I highly recommend that you do!) at JakeSeliger.com

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