About a year ago, on the night before my birthday party — the first in three decades — I received a call confirming the tumor in my right lung was indeed cancer. “This is great news” said the voice on the other end, “it is the best kind”. And after a couple of weeks of holding my breath and blissful denial, even this kind of certainty was perversely comforting. Still my brain was relentlessly running in circles, trying to make sense of the words, trying to find something to hold on to or even just begin to understand the enormity of what this meant. But it couldn’t. It is one of those instances where the only clear thought is that life was amazing up until 3 seconds ago but there is no going back. Ever. Again. And so you freeze while your inexhaustible mind is trying to find a way out of the unfamiliar maze it has been thrown in, knowing there is no easy way out, you have to schedule yet another appointment, avoid the internet rabbit hole and hold your breath again until someone can start translating it all. You are about to have a car crash, without any control over speed or direction, just waiting for the moment of impact.
I decided to take the subway back to work, more out of reflex than anything else, and distinctly remember sitting right across from a couple, maybe in their 50s, her knitting, him reading a paper, his hand on her knee, affectionately close. And then it struck me that this lightness of everyday nothingness, these moment of simple perfection — i had lost access to them in a split second, earlier, on the phone. The face off of the two extreme human conditions seemed brutal yet strangely soothing, for in a way it was proof that life could indeed be beautiful, sometimes you just had to be on the far end to see it.
I hardly remember anything from the birthday party — old friends, a new crush, the sheer desire to dance and have fun, all of these things were in harsh contradiction with the unspeakable verdict on my mind (thank god for whisky). And while I started sharing the news the next day in the numbness of the hangover, it still felt strangely abstract, like you’re watching a play while simultaneously being the actor, naked and alone on stage, without a script or title.
Here’s the thing: you don’t just find out you have a tumor caused by the abnormal, uncontrolled growth of a single cell, you find out you have cancer. They might be one and the same thing, but the mythical and popular dimensions of cancer have more seducing power than the seemingly impenetrable anatomy. One of my doctors was reluctant himself to call it when I asked if it was cancer “well, it is a tumor…” — and there still are many places in the world were such a diagnostic is rather given to the family in lieu of the patient.
Susan Sontag, having survived cancer twice herself only to succumb to it the third time around, noted that “any important disease whose causality is murky, and for which treatment is ineffectual, tends to be awash with significance” 1. We are involuntary looking for a moral meaning, reason and blame, for cause and effect. Medicine made enormous leaps in the almost 40 years since Sontag’s book — when cancer was still largely seen as one single illness to being understood as over 200 different diseases, furthermore with unique manifestations (“every patient’s cancer is unique because every cancer genome is unique”2) — yet in spite of this huge progress in the understanding of the disease, advances in treatments and decline in mortality, some of the myths and metaphors are still surprisingly stubborn to leave our imagination. Since cancer is an illness coming from within, with invisible symptoms, reflecting a sick interiority, its very name associated with pure evil (to this day pretty much everyone except for my doctors avoid saying the word cancer), upon delivering such news you are immediately being interrogated about your diet, smoking, sleep, stress, any other possibly blame — and shameful aspect of your life. One is playing detective and looking for clues and assurances that, after all, they are making the right choices. But when you hear “you got to be careful what you eat, what you think”, you are being handed not just a judgment but a most direct incrimination. For some reason it seems impossibly hard to accept the still unknown nature of many such mutations (among the random, baseless theories thrown around in my family were jogging in the city, the NATO bombing of Serbia and last but not least, my dog), and even if we do understand them (smoking, sun), we have yet to confront our own ways of life because, after all “the cancer personality is regarded more simply, and with condescension, as one of life’s losers” 5 and no one thinks of themselves as a loser. Why else are we smoking or avoiding sunscreen if not because we think we will beat the odds?! The odds however are heavily stacked against us, as it is estimated that at 1 in 2 men and 1 in 3 women will develop cancer during their lifetime6.
We now know that cancer is in essence a genetic disease, ignited by changes in DNA that affect genes which trigger the uncontrolled growth of cells. Siddhartha Mukherjee describes the illness as in essence emulating our own organism, only better: cancer cells can grow faster, adapt better and are technically immortal. In other words “they are more perfect versions of ourselves” 3 and in that sense, Sontag’s metaphor of cancer being “a demonic pregnancy” 4 is more literal than anticipated (and thank you for that very vivid visualization Ellen Ripley). Unexpectedly though, with all the fear and stigma, cancer also brings out the best in people: small talk isn’t necessary (or possible) anymore, the pleasantries and superficial etiquettes are finally cast aside, making room for meaningful conversations. When the worst shows up instead, which it inevitable will, you can’t but empathize as such reactions are unequivocally tied to one’s own fears and limitations. It is in such moments that we get to know each other best, that a little gesture is at its loudest and absence at its clearest, that some things survive and other break. Vulnerability can be terrifying and after all, nobody is really ready to face their own mortality, you only do so when you can’t look away.
It took another while for the idea of cancer to really sink in. There were small things in between that were bringing me closer to accepting the diagnostic — such as strolling in for another scan just to be told that I will be radioactive for the next 12 hours (“just stay away from pregnant women and kids” can I take the subway? “sure, just stay away from pregnant ladies” can I be at home with my dog? “is she pregnant?” no “then yes”), but it isn’t really until you understand what is to happen to your body that everything becomes real. My surgeon drew a diagram of the lungs and a second one explaining the range and types of lung cancers and the associated malignancies — “it really is the best case scenario”. Apparently good news in medicine depend on which side you are on.
Turns out lungs are as fragile as they are essential. As the primary organs of the respiratory system they are tasked with extracting oxygen from the atmosphere and transferring it into the bloodstream, helping it find its way to every cell (ironically only cancer cells are able to survive hypoxic, without oxygen) while simultaneously exhaling carbon dioxide, a waste product of metabolism. We start breathing through the lungs at birth and our first breath is if not the hardest, certainly the most complex: in the womb the fetus receives placental oxygen through the umbilical cord and only during the first seconds of birth does the baby take its first breath through the newly functional lungs: our first cry, besides expressing dissatisfaction with the cold, harsh, bright outside world, is also our way of learning to breathe.
Lung cancer, with a 5-year survival rate of only 18%7 happens to be the most commonly diagnosed cancer worldwide, and the leading cause of cancer deaths in the United States, which is killing more people each year then breast, colon and prostate cancer combined8. The biggest cause for its “popularity” is smoking (it is mystifying how tobacco companies are still around when knowingly responsible for 6 millions deaths/ year worldwide9), yet some lung cancers occur without a known cause which also means their prevention is not possible. Most cases are not curable. As every 3.3 minutes someone in the U.S. dies of lung cancer, every 2 ½ minutes someone is diagnosed with it, but only 16% of people will have caught it in the earliest stage10, when the disease is most treatable. The effort to fight these numbers is huge, there is a even a Lung Cancer Dream Team and numerous organizations that help ease the suffering and fight the stigma associated with the disease (if you doubt the stigma have a look at thelungcancerproject.org).
Turns out my carcincoid tumor (subtly baptized Lil Fucker), a rare occurrence showing up in only 1- 2% of all lung cancers, was hanging out in the airway of the lower and middle lobes in the right lung, the latter of which had already collapsed, it’s bronchus completely blocked by this shrimp like organism my body birthed. The tumor’s growth was so slow that even as a runner I couldn’t notice the gradual decline of my lung capacity, and I would have never found it was it not for the occasional cold that kept lingering on for longer than necessary. Before you ask, its cause is unknown and the 5-year survival rate is 50–70% to 85% — 90% (depending on the type, you only find out which kind you are blessed with after the pathology report) which is great when it comes to lung cancer yet as a patient I couldn’t help but wonder where the remaining % had gone. So considering I was half the average age of patients with this already super rare tumor, which was to be removed through surgery — albeit with a big chunk of my lung but without follow-up treatment or chemo, it was indeed “great news”.
The science of things was crucial in demystifying the diagnostic but it was then when it finally hit me. It had been about a month of holding my breath, and the certainty of the surgery, detailed in its violence and scheduled for a spring day, broke the damn. The world was being pulverized into a million pieces, nothing recognizable left around, with nobody else noticing it. You are deeply alone, in spite of the people around you. And then I thought for a little bit and realized that actually, i was … happy, that if that was all there was to be, well, than I did pretty good. And also, if there was more to be, than it’d better be good too. In times where we seem programmed to always want more and strive for the next superlative, you are sometimes unable to see what is in front of you. Sure, there were many things I still wanted to experience, dues to pay and things to live, yet I also couldn’t help but feeling deeply aware of the things I already did get to see, to hear, to touch, to feel, to be. Every single breath is full of awe once you understand that, after all, none is granted and certainly none is deserved. And so I booked a flight to do a few more things that were important to me but hadn’t found the time for in a while. It turns out cancer has that ability, to really put the notion of time in perspective.
I remember the days in the hospital as being quite meaningful. Friends would stream in and out, the room was covered in flowers and a FDNY calendar was an informal barometer for the nurses’ mood (also, the hospital might be the only place where a woman in her mid thirties is being told she is young and in great shape). A “happy button” was keeping any source of pain and panic at bay, needles and tubes perforating the skin, tying you down through a maze, annihilating any idea of mobility. The even rhythm of machines and rituals gave the days a soothing pace, as did watching the lungs’ suddenly precious movement.
Respiration is one of the four vital signs of life but there is much more to breathing than just keeping us alive. Sontag wrote that, beyond the pure physicality, or maybe because of it, a disease of the lung is metaphorically seen as “a disease of the soul” 16. Across cultures the spiritual concept of breath is related to the vital force and incorporeal essence of a living being or the spirit and soul. You can find it in the Ancient Greek pneuma, the Hindu term prana, the Hebrew ruach, the Chinese Qi, as well as the psyche in psychology.
Beyond the spiritual, our breathing patterns are also intimately tied to the simple expression of all physical and emotional changes — laughing, crying, screaming, sneezing, sighing (sighs are also a life-sustaining reflex that helps preserve lung function13), even suffering. This happens through the respiratory control center at the base of the brain which manages our breathing and adjusts it to changing needs according to sensors in the brain, blood vessels, muscles, and lungs. It is being described as being made up of neurons, each functioning “like a button that turns on a different type of breath, one button for regular breaths, another sighs, yawns, sniffs, coughs and maybe even laughs and cries”14. Being one of the few automatic bodily functions that we can also override, albeit only to a limited extend, we do control breathing consciously or not, in order to perfect physical exercise (swimming, running, yoga), speech, singing, meditation or even moods. Think of something terrifying and you will sense your breath slowing down, almost coming to a halt, take a deep breath and feel your body and mind relaxing, or try yoga to understand how every single expiration can push your body deeper into a stretch. But all these are secondary functions, and if the breathing doesn’t work properly, it will cause a chain reaction of both physical and psychological unexpected side effects(that is why for example drowning people are physiologically unable to call out for help 15 ). Dr. Paul Kalathi sums it all up in a way in the title of his powerful and humbling account of succumbing to terminal lung cancer at only 37 years of age: named “When Breath Becomes Air”, it beautifully draws the line where one stops breathing and thus stops being.
Visiting the cancer ward for the first check up, sometime later, I was surprised by a strange feeling: it felt familiar, comforting, easier to be there than anywhere else. The outside world didn’t have room or time for illness, for recovery, for pause, and here, here everyone had to leave a part of themselves at the door, everyone had to confront, at one level or another, their own vulnerability. The mood was sober. Time had once again a different rhythm and everything you saw out the window, people rushing, cars honking, seemed ridiculously abstract and un-relatable, like a dance you were once great at but could never imagine being able to dance it again. How does one go back? Do you get to go back? There is no roadmap, not for the suffering and not to recovery, and one has yet again to improvise a script from scratch. Eventually, the body healed. With time both lungs and heart learned to function according to a new normal and I had a newfound respect for our amazing ability to recover: I went on a hike a month after surgery, and a first run another month later. Mentally on the other hand I felt like an animal coming out of thanatosis, having escaped an extreme threat yet only just getting a taste of the unthawing emotions.
As I write this my dog is asleep next to me. Every now and then, he takes a deep breath, letting the air out in a loud sigh. I can’t help but wonder what he is sighing about: the inaccessible jar of food, so close yet so far, the squirrel he almost caught, the cats that don’t want to play? I am jealous. My left lung, healthy and intact fills itself with air and extends deep into the belly. The right one, down to a single lobe, is short and depthless and the asymmetry is driving my architectural brain mad. Yet it also doesn’t let me forget that I am lucky. Not only because it was “the best kind” of cancer, but also because I had access to great medical care, my career did not depend on my lung capacity (as an athlete’s or singer’s does) and thus survived relatively unscathed, and I was also fortunate to be surrounded by friends, family, strangers and fellow sufferers that showed boundless generosity. Still, no single part of me was left unturned, no moment unaffected, no aspect unquestioned, no bone unbroken. And while everyone around me is trying to forget about it, I cannot remember what anything tasted like before: cancer did give life a deeper meaning, or as a friend perfectly described his own experience thereof, you feel “reborn as the AD version of a BC self” 17. Because life is intensely beautiful when everything becomes sharp and clear, when the essence of things is immutable and there’s no room for hesitation, no bandwidth for bullshit, when feelings are raw and being is unbearably simple.
In “The Afternoon Conversation”, when asked how he spends his time since quitting art Marcel Duchamp answered “Oh, I’m a breather, I’m a respirateur, isn’t that enough?” and in a way that is what I had learned the hard way too. Respirateurs we shall all be, just remember to breathe.
1 Sontag, Susan. “Illness as Metaphor and AIDS and Its Metaphors.” Picador
2 Bert Vogelstein in Mukherjee, Siddhartha’s “The Emperor of All Maladies: A Biography of Cancer” Scribner
3 Mukherjee, Siddhartha’s “The Emperor of All Maladies: A Biography of Cancer” Scribner
4 Sontag, Susan. “Illness as Metaphor and AIDS and Its Metaphors.” Picador
5 Sontag, Susan. “Illness as Metaphor and AIDS and Its Metaphors.” Picador
6 American Cancer Society, 2017 Facts and Figures, Page 14 Table 6 https://www.cancer.org/research/cancer-facts-statistics/all-cancer-facts-figures/cancer-facts-figures-2017.html
7 seer.cancer.gov/csr/1975_2013/results_single/sect_01_table.01.pdf Table 1.1 (alternatively www.lungcancerfoundation.org/about-us/lung-cancer-facts/)
8 seer.cancer.gov/csr/1975_2013/results_single/sect_01_table.01.pdf Table 1.1(alternatively www.lungcancerfoundation.org/about-us/lung-cancer-facts/)
9 American Cancer Society, 2017 Facts and Figures
10 seer.cancer.gov/csr/1975_2013/results_single/sect_01_table.01.pdf Table 1.1 (alternatively www.lungcancerfoundation.org/about-us/lung-cancer-facts/)
11–12 American Cancer Society https://www.cancer.org/cancer/lung-carcinoid-tumor/about.html
16 Sontag, Susan. “Illness as Metaphor and AIDS and Its Metaphors.” Picador
17 Daly, Ian “You Can’t Come Halfway Home From the Bar“ https://www.poetryfoundation.org/articles/69173/you-cant-come-halfway-home-from-the-bar