Cancer Speaks Its Own Language

How we spend our words is how we spend our life. What happens when you find yourself speaking a language the people you're closest to don't understand? Is it possible to bridge the unbridgeable gap?

If you find this piece worthwhile, consider the Go Fund Me that’s funding Jake’s ongoing cancer care.

I recently wrote about being silent for an entire week after having a cyst removed from my right vocal cord—a fascinating bit of microsurgery that involved intubating and paralyzing me, so I could be oxygenated without moving any part of my larynx, while a rigid scope allowed the ENT surgeon to dissect layers of my vocal cord away from a fluid-filled cyst; if the cyst had ruptured, the surgery would’ve likely been a failure.¹ During the surgery, my surgeon, Dr. Sugamaran, had his assistant shoot photos through the scope, because Dr. Sugamaran knew I’d want to see my own insides. The cyst, yellow and dense in comparison to the pearlescent pink tissue around it, looked like a small golden egg that’d been incubating in my voice box—like a secret I hadn’t been able to tell, made flesh.

Unfortunately, the cyst wasn’t actual gold,² though I can’t be 100% sure since no one would give it to me. I asked, because I’m a doctor and a scientist, and also because I thought it’d be neat; doctors and scientists are gross about keeping fleshy things in little jars on display, but the powers that be said no. Something about medical waste, biohazard, blah, blah, blah, a lot of bad arguments. I countered that I grew the cyst, so it rightfully belongs to me—if you make it yourself, you own it, barring other contractual agreements—but apparently medical purview subscribes to the doctrine of “finders keepers.” I’m going to complain on a Press-Ganey survey, if I get a chance. It’ll have to go under “other comments,” since there isn’t (yet) a section specifically related to the confiscation of one’s organic bits.

The cyst now belongs to the St. Joseph’s hospital pathology lab. This thing that had changed the tenor and timbre of my voice, and of my life, is no longer mine. The outcome and subsequent quality of my voice belongs to the skills of Dr. Sugamaran.   

My cyst isn’t my own anymore and my voice isn’t my own anymore. Most of the sounds I make aren’t for me, anymore. For the last six months, my voice has really belonged to my husband, Jake. I mean it both existentially, as in “the things I say come from thoughts Jake and I have together, melding in the way of long partnerships and marriages, so that at least half of what I say probably started out as one of Jake’s thoughts,” as well as practically. While Jake can speak, he’s often not heard until I speak for him.   

Since Jake’s tongue was surgically removed due to recurrent/metastatic head and neck squamous cell carcinoma(R/M HNSCC), Jake relies on my ability to speak, to make phone calls, and to translate for him when people don’t understand.³ He unfairly compares himself to a honking goose, a duck being strangled, a chicken that’s about to wind up on a dinner place, a broken windmill, a noisy piston and a slurring parrot⁴. To me, he sounds like new Jake, kind of like Darth Vader is the successor to Anakin Skywalker, and I’m well-practiced at understanding Jake, but I admit, for others, it’s harder. Phone calls work particularly poorly.

In “Seven days of silence: A chatterbox’s lament,” I described how hard the week of required post-op silence was, but I didn’t describe one of my chief worries: not that something would go wrong during the surgery that would permanently disable my voice, though I did fear that, but that Jake would urgently need something requiring a phone call or a conversation during the time I couldn’t speak. He’d need to schedule essential appointments if his clinical trial drug stopped working, or fight insurance to cover a necessary treatment, or speak to 911 if something went horribly sideways—and I wouldn’t be able to help. Not being able to help Jake has been the defining, and rational, fear since he was diagnosed with cancer. There’ll come a day, possibly soon, when I can’t help. He’ll be going somewhere I can’t follow. That’s a fact of fatal illness I’ve had to grapple with as a physician, but it’s hard to approach that truth gracefully when I’m thinking as a wife.

Illness constantly reminds you of your impotence.⁵ So many things can go wrong, the magnitude of which aren’t always obvious in the moment, and then realized too late. Jake needs so much to be monitored, adjusted and organized, and no one will care as much as Jake or me. As a physician, I’m in a unique position to advocate, and yet, the list of regrets and missed opportunities keeps growing. New oncological opportunities and clinical trials, in areas I’ve never seen and don’t understand, keep cropping up. Jake suffers for our ignorance, and, while someone could argue that his treatment is the responsibility of his actual doctors, who have six plus years of training in a field very different from my own, our experience has been that doctors vary widely in quality, tenacity, and knowledge, and it’s been our vigilance⁶ and research, along with my voice—my voice that asks the questions and makes the arrangements—that’s kept Jake alive. Some of the oncologists we’ve run into have a shockingly cavalier attitude towards preserving Jake’s life. Jake and I do not.  

Even though I tried to schedule my vocal surgery during a time when, for once, we didn’t anticipate any changes to the current “keep Jake alive” treatment plan, planning doesn’t preclude deviations. In a horrible way, that’s ER-doc job security. I’m reminded of a juggling video a friend of mine once made when he was auditioning for Cirque de Soleil. He’d worked out every detail from the location, his outfit, the type of juggling ball, the background music. In the video, the sun finishes setting on a snowy clearing as my friend, clad in black, puts on fireproof gloves. He lights four black juggling balls on fire. All four balls of fire begin dancing through the air. He’s managing brilliantly, as expected, and viewers can only see the fire. Then I notice another area of light that isn’t moving. What is it? It’s an impressive trick. I study the video, like, I imagine, most viewers. As the area of light grows and begins to move erratically, I see. I see that he’s lit his hair on fire.⁷ If Jake’s proverbial hair lit on fire during my post-operative period of enforced mutism, how would I quickly call for help?

During my pre-op speech therapy appointment, Sarah, my speech therapist, brought up the concept of “vocal spending.” She meant that, when I start speaking again, if I use 10 hours of vocal reserve at work, I need to make sure that, in the evening, I don’t overdraw by going to karaoke. I’d need a quiet environment instead, or be—shudder—silent again. Her point concerned vocal stamina but also reaffirmed that where you spend your voice is where you spend your life. Where I spend my words changed when Jake began to die at an accelerated rate.

Upon news of Jake’s recurrence, we turned inwards towards each other. I’ve noticed this turning inwards among many couples I’ve cared for in the hospital. An intimacy exists, an existence for the two of them that’s apart from the rest of society, especially healthy society, even when the room is full of other people (many of whom have seen your partner naked and rooted around in his insides—there’s little privacy in the hospital). R/M HNSCC is almost always terminal, and Jake has now had a double recurrence, plus metastases. Jake’s tumors are aggressive. When we learned in May that his cancer had recurred the first time, we didn’t know if the surgery would be effective or if Jake would survive. Though his surgeon, Dr. Hinni, got clean margins, the cancer was back in less than two months and reached Jake’s lungs. We didn’t know if we had months or even weeks in which to condense the 40 additional years of partnership we anticipated. I’d always been a promiscuous talker, but that’s when I started speaking almost exclusively with Jake.

Jake might be hard to understand because of his tongue, but I’ve become hard to understand, too. What I mean isn’t that the cyst made my voice hard to hear, but that who I am and how I am in the world has changed drastically. Parts of me have become unknowable to the people with whom I was closest. Illness causes chasms between friends—some people vanish because they’re repelled by discomfort and awkwardness and the fear inherent to sickness. Others step up, sometimes surprisingly; in my life, they know who they are. I’m grateful for the people who reach out and show me that love and care transcend shared experience and understanding, but sometimes I still find myself at a loss for words. Few people my age are watching their spouse and partner die; few friends get it without extensive explanations I don’t have energy for.

There’s a concept called “linguistic relativity,” or the “Sapir-Whorf hypothesis” that theorizes that the language you speak determines how you think. Consider a great example from a speech by linguist Lear Borodistky at UCSD:

Languages have all kinds of structural quirks. This is one of my favorites. Lots of languages have grammatical gender; every noun gets assigned a gender, often masculine or feminine. And these genders differ across languages. So, for example, the sun is feminine in German but masculine in Spanish, and the moon, the reverse. Could this actually have any consequence for how people think? Do German speakers think of the sun as somehow more female-like, and the moon somehow more male-like? Actually, it turns out that's the case. So if you ask German and Spanish speakers to, say, describe a bridge, like the one here -- "bridge" happens to be grammatically feminine in German, grammatically masculine in Spanish -- German speakers are more likely to say bridges are "beautiful," "elegant" and stereotypically feminine words. Whereas Spanish speakers will be more likely to say they're "strong" or "long," these masculine words.

James McElvenny, a linguist at the University of Siegen, Germany, in writing about Sapir-Whorf wonders: Could there be unbridgeable gaps between groups of people speaking different languages?

Since Jake’s diagnosis, we’ve been speaking a new language, a different language than the one we used to share so easily with friends. Yes, I learned the language of medicine from 15 years in the field, but the language of practicing medicine differs from the language of being a patient, and the wife of a patient, even if there’s some overlap. Familiar words are applied in unfamiliar ways and given new, emotional heft. In 1791, Wilhelm von Humboldt ran with the idea of linguistic relativity and went so far as to suppose linguistic determinism:

That is, that language not only reflects a particular worldview but is actively involved in shaping it: ‘Language,’ he wrote, ‘is the forming organ of thought.’ The relationship he envisaged, however, was not one-way but dialectic. Between language and thought there inheres an endless feedback loop: our thoughts shape our words, and our words shape our thoughts.

The language of illness has changed the shape of both our thoughts and words. Words like “sick,” “tired,” “later,” and “forever,” that were once familiar, now have different subtext. Being out of linguistic sync furthers the gap between friends and family, and neuroscience, however primitive it is, backs up this feeling:

“Neural coupling, or synchrony between speakers and listeners, predicts the success of a conversation. A study from Princeton University, using fMRI to record brain activity from both speakers and listeners during natural verbal communication, shows how a speaker’s brain activity is coupled with the listener’s during successful communication (Stephens 2010). This coupling of brains, or synchrony, disappears when we fail to communicate. As an example, when speakers communicate with a listener who does not understand the language of the speaker, they fail to sync (Stephens 2010). When we connect at a deeper level with others, our brain patterns mimic each other’s—we actually start to see the world through their eyes.”

My writing here on Substack is for you, yes, but it’s also for the people I know, and these essays are a way to explain myself in a way that I can’t via oral speech. Too much is going on to be able to try to explain it using my voice. I’m attempting to bridge the unbridgeable gap, to explain my feelings and experiences, our new words and the new shapes of my thoughts to the people I miss but can’t seem to call. It’s the best way for others to see the world Jake and I inhabit. Once I’ve built the bridge out of written words, what’s left?⁸

Small talk is out. Shortly after Jake’s recurrence, he proclaimed a “moratorium on banalities.” Both of us dislike small talk to start with—why not say or hear something real?—and, with so little time remaining, we want to get out and hear whatever’s most vital. What is left to say, in the small amount of time we can devote to saying it, can’t be about the weather, or dogs (unless you have a dog here and we can pet it—can we pet your dog?), or hot new gossip about the hot new thing. We’re not much for gossip, anyway, apart from the gossip that illuminates the human condition. Jake says he wants to hear about science, effective accelerationism, progress, art, love, the technological sublime, and the purpose of life. I want to talk about meaning, because we have to make it ourselves, or there isn’t any; and meaning feels both so necessary and so fragile now. I get that it makes me a little intense, wanting to do away with small talk, and drop right into the deep end. But how can I not sound like a crazed street corner prophet screaming that the end is nigh? The end is nigh.

At the end of my week of mandated post-op silence, I surprised myself:

I expected not talking for a week would be a bigger identity crisis than it’s turned out to be—enough that I’ve started to wonder if I’ve gotten myself wrong. So, maybe it’s an identity crisis after all. Or at least, an identity re-evaluation.

I hadn’t realized that I felt like a different person because I’d spent much of the last year rewiring my brain. It took a forced, prolonged silence to notice the physiologic, cortical plasticity that occurred:

Our ability to speak, and speak well, says Pesaran [associate professor in NYU’s Center for Neural Science], is not unlike a well-developed skill. Using those parts of the brain dedicated to speech will make them stronger. Underusing them will make them weaker…If you are unable to use a bodily function, or choose not to use it, says Pesaran, you’re liable to experience shrinking of the areas of the brain associated with it. If you stop speaking, the number of neurons that are active, or could be active, for that process will get smaller, and the neurons that were once active for speech will become co-opted to do other things.

I’ve been developing the areas responsible for language acquisition as I learn this new cancer lexicon. I paid closer attention and listened more. I co-opted the parts of my brain that felt the need to speak to assert my own existence and used them to support new ways of thinking and being. It wasn’t the week of forced silence that changed me; I’d spent the last year changing myself and my relationship to my voice and my words. In my silence, I finally knew it.

Last week, I was allowed to speak again. When I did, I sounded like a stranger: softer, higher pitched, and more tentative. I couldn’t find any research to suggest that, just as the language we speak affects the way we see the world, so too might the timbre and tone.

In March, I’ll be healed enough to use my voice full time, and my vocal spending will come with a new, higher cost, as I’ll need to return to work. I’ll spend my vocal energy on people who aren’t Jake, which means I’ll be spending a good chunk of time on people who aren’t Jake, but who themselves need help. I like my job, and I like being able to solve or at least name someone’s malady. Let’s say I’ll be particularly sensitive to possible cancer diagnoses. Despite liking my job, I’m afraid of losing so much time together that Jake and I don’t have, and of what being apart from him after six months of being constantly together will feel like to a brain that’s shrunk the desire for individuation. It feels too much like a trial run for being without him forever.

“You’ll only be gone for ten hours,” he says, laughing. “I’ll be here when you get home.” Like it’s an inevitability. I let myself believe him, even though I lack object permanence when it comes to Jake. January CT scans show that Jake’s tumors are the same size or maybe slightly smaller than they were in November. We’re likely to get some warning before the end—brain or bone metastases herald doom. I don’t know if I can go through another period of talks as intense as the ones when Jake was in the hospital, and immediately after the hospital, but I think that intensity will naturally climax again when the end nears. We’ve promised each other that we’ll leave nothing that needs to be said unsaid, and, though, I think we’ve already fulfilled that promise, I don’t know what might come up. Jake is linguistically tricky and surprising, which is part of what’s fun about him.

I can’t help but think about the stroke patients I’ve cared for, who’re wheeled into the ER with clots blocking blood flow to their language centers. Broca’s-area strokes can’t express themselves, Wernicke’s-area strokes can’t comprehend. Until we build ways to merge man and machine, humans are our hardware; mess up the hardware enough, and the software breaks down, no matter how verbal or articulate a person might once have been. By now, Jake and I have done so much writing together, editing together, thinking together, and speaking together that I don’t need a stroke to lose half of my vocabulary, and half the way I think about and talk about the world, or remember my own past. Losing Jake will be its own brain injury, a mixed aphasia in which I can’t find or express all the words I once accessed easily, where I can’t understand or be understood. Jake has made me promise that I will try to love again after he’s gone, and it’s hard to imagine closing the unbridgeable gap with anyone who hasn’t also experienced a similar loss.   

Recovery, from grief or brain injury, is non-linear. Neural networks are more dynamic than previously thought, and my brain, plastic and expanding, might face the spaces left empty and fill them with a new language, new words on which to build a life. Right now, that gap feels unbridgeable, but I’ll still have to cross it. Who will my voice belong to then?

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

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1. Because retained tissue increases the odds of a cyst recurring.

2. Or a pearl, or a method of nuclear cold fusion suitable for power plants, but it is cool to see man’s medical technology conquer nature’s cruelty.

3. Or a pearl, or a method of nuclear cold fusion suitable for power plants, but it is cool to see man’s medical technology conquer nature’s cruelty.

4. Jake provided this comparison list. I disagree, although I admit that, when frustrated, he does sound a little like a waterfowl fighting off a predator.

5. Jake wishes me to point out that he, fortunately, does not have literal impotence, and petosemtamab, his clinical trial drug, has left some of his best parts in good working order. That’s all I’ll say; it’s not that kind of essay.

6. In the “The Council of Elrond” chapter in The Lord of the Rings, Gandalf says he “was lulled by the words of Saruman the Wise; but I should have sought for the truth sooner, and our peril would now be less.” Elrond replies: “We were all at fault […] and but for your vigilance the Darkness, maybe, would already be upon us.” I wish Jake and I had been even more vigilant, and paranoid, than they were.

7. I dearly love my friend, who is the kind of guy you expect to have a problem like this. If he’s reading this, his support and friendship has been invaluable. He somehow always speaks my language, which is rare, as you’ll see in later paragraphs.

8. Right now, some of the best conversations may be the shortest. A friend calls, they say they miss me, we talk for a few moments, and they tell me a little about their life. I love hearing about what others are up to, although I get the feeling that, despite my insistence that I want to hear, people are reticent to talk about their own lives and problems. “You have enough on your plate,” is something I’ve heard a lot. But my plate is large, and it has sloped sides—it’s actually a bowl—and I need reminders that there is a larger world that still has a place for me, even if I’m not looking to take it, yet. To the friends who are keeping my seat warm, know that I love you and I appreciate the support.