The calculus of connection and the PEG tube struggle.

Jake's illness brought us emotionally closer, while the tubes and port he needs to stay alive push us physically apart. Can we close that space and regain the easiness our bodies once had together?

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Jake is spewing acid from a hole in his stomach, which would be a pretty badass adaptive defense mechanism if the cause wasn’t a PEG tube malfunction. The PEG tube is a plastic device through which Jake infuses liquid nutrition directly into his stomach—a necessity to get enough calories since his tongue was surgically removed. The tube is inserted through a tract in Jake’s abdominal wall, and held in place by an internal balloon. Externally, a six-inch plastic tube with two ports that attach to specialized ENFit syringes is supported by a “Grip-Lok”—that is, a large adhesive sticker with a Velcro loop through which the tubing is fed.

Somehow, the cap has popped off one of the external ports. Consequently, nothing is impeding what’s inside Jake’s stomach from coming out of Jake’s stomach, though the intent of the PEG tube is to insert, not eject material.  Stomach contents spray out and across the kitchen counter, into the sink and skim the freshly chopped cilantro in its pretty green pile. Jake’s startled and tries to point the projectile liquid away from things, which only results in him moving his body back and forth in a sweeping motion, arcing acid through the air, while he fumbles to replace the cap.

“Shit! Shit! Shit!” he yells, and his audience—me, and his friends Genie and Katie who are visiting from Vermont—echo like a Greek Chorus: “Shit! Shit! Shit!”

Although, technically, this is too high up in the digestive tract for such a comment and we should be chanting, “Acid! Acid! Acid!”

Jake manages to get the cap back on. Pushing down the cap, however, causes the second cap to pop open. Where’s the pressure coming from? Surprise turns to fury, which refocuses Jake, because he kinks the tube, stops the flow, and replaces the second cap—which stays shut this time. Very slowly, he releases the tube, where it dangles limply against his wet abdomen like a malfunctioning vestigial organ, or some kind of alien parasite that was too puny to punch its way fully into the world.

Jake screws his face at the smell. “It’s fucking everywhere,” he says, in a calm, deadpan tone that sounds dispassionately resigned but gives me gooseflesh. I know the tone. It’s the tone that was so persistent in those first months after the surgery; the tone that asked if eking out more life was really worth it, if it meant living within the confines of the damaged body he’d been left with; the tone that asked, as a truly non-hypothetical, if the alternative to living was more appealing; a tone whose answer, until recently, was often—and is still sometimes—yes. He’s asked seriously: “How much suffering is too much?”, and I’ve always known that one day the answer will be “this much suffering is too much.” He’s promised that he won’t choose the end without telling me first, but, as attuned as I am to Jake, I think I’ll catch the answer in his voice before he tells me in so many words, so, I can’t help but strain to hear the meaning beneath his language.

Jake stands still. He tries to control his breathing, but his face is a red welt of frustration and despair as he surveys the ineluctable facts of his permanent illness, displayed as a sodden kitchen mess. I get a roll of paper towels and soak up the fluid on the ground and countertop. I don’t say it’s okay, because, while it is technically okay—as in, we don’t need an ER visit, the tube isn’t broken, nothing is bleeding, discorporation isn’t imminent—the unexpected tube opening is also one of the daily reminders that the needle on “okay” has been significantly recalibrated from where it was before the massive May 25 surgery that took his tongue and left him with the cursed PEG tube.

“Everything’s fucked,” he says as I hand him paper towels, which he blots across his stomach, picking up the tube cautiously, skeptically, as if it could be startled into reopening. It’s not a small animal, but its unpredictability makes us treat it like something that could strike if not handled with slow, steady movements.

“Except for the soup,” I say, pointing to the untouched pot, lidded and out of the splash zone. I speak not from a place of obnoxiously false cheer, but because he put effort into a dinner that we could all eat together; one that he can blend to drink by mouth and enjoy while the rest of us eat from bowls.

A ruined meal doesn’t mean the same things it did a year ago, when we could oversalt the stew and order Chinese instead. Today, a meal we can share is one that was made considering texture, blendability, spice levels, and flavor profile optimized for tasting with the tastebuds remaining in Jake’s esophagus and hard palate. There’s no easy or quick oral replacement except for melted ice cream or a cookie blended into a slurry with milk. Sweets were Jake’s first entre into “eating” slurries by mouth, but they’re a limited and fundamentally unsatisfying repertoire. And they’re not what the rest of us are having. That matters.

The partial, tentative return to self that I’ve seen in Jake has occurred in concert with reestablishing a connection to food, especially the kind of vegetable-heavy, global flavors of pre-glossectomy diet we referred to as “Jake food,” even if that food is blended and liquified. Defaulting to Liquid Hope™ injections through the PEG tube technically solves the problem of inserting calories, but it doesn’t address the literal and existential disconnection that kind of feeding creates. There’s no taste, no sharing in the meal consumed by others; nothing but the calories themselves, which, while important, highlight what’s lost. Jake’s always forged bonds through food: he cooked for me on our first dates, invites people to dinner as a means of making friends, and shows love and care through food. Tonight’s meal isn’t just a meal, it’s a confluence of so many miraculous things; Jake is still alive; Jake can swallow; Jake can cook; Jake can taste. The point of this evening is to have the first shared meal with friends since his surgery, one in which we all—including Jake—consume the same thing.

Cleaning up the leak takes little time and effort: I spray some dilute bleach on the interface of what everyday life has become and rearrange the scene to its prior condition while Jake showers. There wasn’t as much volume as there was surprise and panic, despite its explosive, dramatic presentation.

Next to losing a tongue and facing what, without the clinical trial medicine, would’ve been a swift and terrible death, dealing with a brief PEG tube malfunction is minor. Weigh it against the litany of bodily insults that Jake has endured. But it’s not this one particular indignity so much as the constant, persistent problems that act as reminders that even a new normal can’t reach a satisfying homeostasis.

Since finding out that Jake’s tumors are stable on the clinical trial drug petosemtamab, a new normal has been difficult to define. Until November, we assumed Jake would die with his deficits, not live with them. But he may live for many months—years, even. In the seven months since surgery, the so-called minor problems have become a major part of everyday life, demanding attention, upkeep, and interfering with the way we want to spend our time —reading together, writing together—and overwhelming Jake’s and my ability to focus on moving forward.

At least for tonight, the soup’s still on.

Everything might not be fucked, but so much has irrevocably changed. I’ve written before about the ways that cancer makes your world smaller, limiting how far we can travel, how quickly Jake’s energy is depleted, and the way it steals our ability to plan for a future as long as we’d like. But cancer isn’t solely about what’s taken away. There’s been a whole new lexicon of stuff added into our lives: the PEG tube and ENFit syringe attachments, the wedge pillows that Jake depends on to prop him up at night so that saliva doesn’t pool in the back of his throat and make him feel like he’s drowning, Vitamix blenders so we can make slurries, pouches of the hydrologized food Liquid Hope, the subclavian port and its specialized connectors, the steroids and antibiotic creams to treat the pain in Jake’s fingers and toes where the petosemtamab attacks his nailbeds. Forget any one of these things while traveling, which we have to do twice a month for Jake’s clinical trial treatments at UCSD (or remember them but lose a piece of luggage) and it’s a crisis.

When Jake and I imagined our transhumanist future, we pictured sleek partial exoskeletons or augmented neurology powered by chips and perhaps some cool adjustable LEDs, along with seeing in infrared or ultraviolet. But the things that keep Jake alive are barely optimized for their intended purposes, let alone being exemplars of scientific progress building up towards that glorious future living in Dyson Spheres. The PEG tube has been a constant struggle because it’s the one thing that demands constant attention: it has popped out, cracked, leaked, clogged, snagged, irritated, opened. Sudden PEG tube failures led to three separate trips to the emergency room to have it replaced, a process that’s relatively simple now that the tract has healed, but also painful and a huge waste of time for someone who doesn’t have time to waste.

The PEG tube is also a constant source of discomfort: the Grip-Lok that keeps the external tube from becoming a pendulum, or being violently ripped out by catching on Jake’s pants, doesn’t prevent the tube from rubbing against Jake’s shirt. Because there’s a necessary inch between the internal balloon and the external bumper, the tube slides in and out along the abdominal tract whenever it catches on his shirt, or he moves his arms, or anything presses against it, leading to the formation of painful granulation tissue.

The shower, once a form of relaxation and a place to think, has been transformed into a challenge: how does Jake get the necessary parts under a quick stream of water so that the Grip-Lok doesn’t lose its stick, soap doesn’t get into the area around the tube opening, and water pressure doesn’t cause pain from pushing against the tube? It’s not worth the effort. Jake uses a mobile shower head to wash his lower body, but he uses washcloths in the sink for his upper body. He doesn’t complain, but it’s not hard to see that the system is unsatisfying. So many satisfactions have been taken from him that I want to give him back whatever I can, but the PEG tube gets in the way of even that.

Every interaction with the PEG tube is a reminder of what’s been lost, and yet there’s no way to not interact with it, not if Jake wants to live and intake adequate calories, so Jake has to accept this constant, irritating, external reminder of what’s been cut out of his life, for as long as he remains corporeal. We didn’t know that the loss of Jake’s tongue also meant the loss of comfortable clothes and warm showers. We didn’t know that I wouldn’t be able to simply walk up and hug him. The PEG tube is a physical barrier marking the border between before cancer, and after. But it’s also a barrier between us.

Jake and I have both mourned the ways his body has changed, because it has changed the way our bodies relate to one another. Couples develop a kind of choreography—a thousand small ways to interact with the person you love throughout the day, and give them physical reassurances of that love—that plays out like a subconscious program. I, especially, tend to be more koala than woman in the way I show affection, wrapping my arms around Jake’s middle whenever I have the chance, straddling him when he sits on the couch and wrapping my arms and legs around him while I bury my face in his neck, or reaching out to touch him at the waist when I walk by. At least, I used to. Now, the PEG tube’s in the way. I’ve accidently yanked it too many times, eliciting yelps. Jake knows I don’t mean to hurt him, but it feels like stepping on a puppies’ tail.

While I’ve said that I don’t see Jake as a cancer patient when I look at him—I just see Jake—it’s also true that Jake’s been augmented in ways that make his body more fraught to interact with. There’s a new calculus to affection now.

If I try hug Jake from the front, then I push the PEG tube in, causing him pain. If, in passing, I idly touch him in a way that tugs even gently on his shirt, it pulls against the PEG tube, causing him pain. If I lay my head against the left side of his chest, I’ll put pressure on the port, causing him pain. I am now something that can cause Jake pain, a fact that, even when it’s accidental, is painful to accept.

Medical treatment robs a patient of bodily autonomy, and Jake’s body has already been violently poked, prodded, examined and acted upon. The parts of Jake’s body that he’s lost has made it hard for him to connect with the rest of the world, especially through speech. But these private changes, the reminders that are for us alone, assert themselves against the oasis of comfort I aim to be. I’ve seen the way patients who return frequently to the ER seem to lose themselves as they lose parts of, and control over, their body. I want to hold Jake together, so he sees himself as I see him, but I have to take a moment to figure out how to do that without hurting him. I worry: what if he senses my brief hesitation before reaching out to him and misunderstands it as a momentary lack of recognition? Does he think I paused because I didn’t see him in who he’s become?

I want my touch to be gentle, reassuring, but I can’t quite get it right. He’ll jiu-jitsu me out of the way when I come in for a hug, blocking my body from pressing against the PEG tube by deftly moving to put me at a safe ninety degree angle to his right, while he reaches out for my right arm to make sure it doesn’t accidentally knock into the PEG or the port. Reaching for his hips is usually safe but depends on the shirt and the velocity. I’m always aware of these potential complications, and try to foreground them, but I still get it wrong, fumbling like a high school boy trying to figure out his first back-hook bra.

Jake’s illness has, in many ways, brought us together emotionally, but the stuff of his illness has interrupted the natural flow of affection, complicating our closeness. I’ve said I want to comfort him, yet, selfishly, I need the comfort of bodies coming together too. How do we settle into the routine animal comforts of physically being together while both of us are constantly running the cognitive sub-program calculating the safe geometries of that comfort?

Recently, at a follow-up visit with his oncologist Dr. Sacco, we mentioned that the PEG tubing had, once again, ruptured, this time requiring an emergency room visit on Thanksgiving day to have it exchanged.

“Why not get a low-profile tube?” she asked.

I’m sorry, a what?

As an ER doc, my experience with PEG tubes is exchanging them when people have the same class of problems that Jake has experienced. In over a decade of practice, I’ve only exchanged tubes like Jake’s, with a long, finicky external component. Wouldn’t I have seen patients with a less-cumbersome design if one existed?

Turns out that, although I’ve seen a lot—everything from a teenager’s aorta disintegrating in my hand to a man claiming the Hot Wheels up his rectum was the result of a poorly positioned slip and fall, to patients with obviously protruding tumors that they furiously claimed had sprung up the day before—I hadn’t seen a MIC-KEY gastrostomy. The MIC-KEY is a low-profile tube that sits flush with the skin, making it easier to conceal, less prone to dislodgement and less likely to form blockages. The external component is about a half an inch wide, with small plastic cap emerging maybe a quarter inch from the body. If that cap accidentally comes open, nothing happens, since an internal valve prevents acid from spraying outwards through the tube. To use the MIC-KEY, an external length of removable tubing is clicked into the tiny port covered by the cap, whatever medication or nutrient is flushed through it, and then the tubing is removed. The MIC-KEY doesn’t snag easily or require a Grip-Lok. It doesn’t tunnel back and forth through the hole in the abdomen, irritating the skin. It waits to be used, requesting less attention or consideration when it’s not time for food or water.

My first reaction to hearing about this other tube was confusion. Wouldn’t something that’s such an obvious improvement been offered to Jake if he was a candidate? 

I sent a message to Jake’s gastroenterologist, who was aware that he’d required three tube replacements in less than six months (tubes are supposed to last for six), asking whether Jake could be reconsidered for a MIC-KEY. She hadn’t even considered the possibility. “That’s a great idea, let’s do it,” she said—a commonly repeated phrase among Jake’s medical teams. We’ve heard that phrase when we’ve brought up genetic testing to search for targetable tumor markers prior to initiating treatment; we’ve heard it after being responsible for finding and evaluating clinical trials; we’ve heard it when creating our own detailed and comprehensive anti-nausea regimen for chemo; we’ve heard it when requesting Liquid Hope™ instead of the vile Boost™ or Nutren 2.0; we’ve heard it in response to any other number of adjustments to both keep Jake alive and improve his quality of life. While it’s nice to be told your ideas are good, it feels especially callous and dehumanizing that we’re discovering them. We’re tongue cancer amateurs. Aren’t the experts supposed to tell us?  

My second reaction was anger.

Building a future on the foundation of uncertainty and loss is hard. It’s hard on Jake, it’s hard on me. It’s hard, because when Jake woke up from the May 25 surgery that took his tongue, he woke up no less of a man. He still deserves to be able to move, and touch and function without constant frustration. Jake’s body is how he relates to the world, but it’s also how I relate to Jake. The PEG tube and other accoutrements of illness form a layer of caution that cling like a film over the surface of our interactions, an obstacle, however thin, to the easy physical connection we once had. While, as I mentioned, I don’t see Jake as an illness, I have to keep a close eye on all that illness demands. 

No one will look as closely as we do. No one will care about Jake being alive—Jake’s life—as much as we do. If we’d relied on Jake’s initial oncologist, he’d likely have gotten some Keytruda (ineffective for Jake), then some palliative chemo, then died. Instead, as I wrote in the epic guide “Please be dying, but not too quickly,” my caring led to Jake getting into the clinical trial that’s keeping him alive. Yet it’s impossible for us to keep track of all details and to know what we don’t know. My first impulse around learning about the MIC-KEY was self-blame: I’m a doctor, so how could I not have known this was an option? But I’m not an oncologist or a gastroenterologist or someone who makes decisions for patient’s long-term infusion and feeding plans. Still, I chided myself for not figuring out the better tube solution. If not me, then who? Which tells you something about how much we’ve come to expect  the doctors and healthcare providers taking care of Jake to guide him towards optimal care.

In medicine, we make a lot of noise about informed consent, but then lack imagination to ask ourselves if the things keeping a patient alive might also keep them from living? If we focus on the body, but not the experience of the person within it, we’ve failed as healers.

A few days ago, Jake had the PEG tube switched out to a MIC-KEY. The procedure took 30 minutes. Interventional radiology did it. No new incisions were needed, no anesthesia, merely a small wire measuring device to determine the depth of his abdominal wall. Jake watched the ultrasound his IR doc used to guide the tube insertion, as a new MIC-KEY was popped in and inflated in place. The site was a little sore, but demanded no attention until it was time to infuse food or medication. After the procedure, Jake stepped shirtless onto our balcony for a brief dip in the afternoon sun. You had to really look to even notice the MIC-KEY was there.

Tonight, as I approach from a right angle to hug him, Jake instead turns his body towards mine and wraps his arms around me. He presses the length of his body against me and I slot into the long, lanky curve of his torso where I fit so exactly, my head beneath his chin, my arms reflexively curling around him so that both my hands splay along the broad expanse of his back. I rest my cheek against the right side of his chest, away from his port, and he pulls me in. I feel a spasm, not from Jake’s body, but from my own—maybe the start of a sob, or maybe laughter—at the normalcy, the intense and familiar feeling of clinging to each other without impediment. It’s a feeling I haven’t had since Jake’s surgery, and one I thought I might never feel again; the tremendous relief of being caught in safe arms, just in time, after a long fall.

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

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Readers: What’re your experiences with the physical limitations caused by illness? Have you ever found out that a better, safer, less painful, or simply less annoying treatment was available and wasn’t offered to you? Share your story in the comments section.