issue 33 > nonfiction > jolles
Terminalby Jen Jolles
It is a week before Christmas, and I find myself standing in the kitchen attempting to cook, fighting with her over text message about how much I hate chemotherapy. The return rate of messages is comparable to machine gun fire in hostile territory. Every time I return to my phone, the three elliptical dots on the left hand of the screen shoot round after round of strong language into wartime air. I jab a knife into the cutting block with force and watch the handle sway as I do after an encounter with an open bar. I have reached my wit's end – with her, with this disease, with myself. As I look out the window to see the city covered in snow, I exhale in exasperation. I fucking hate the winter.
When she shows up to my apartment the next morning for breakfast, she’s still fuming. I am, too, but I am much more subtle in my practice of this art. The smoke rises slowly and snakes around my organs, urging me to stoke it. She, on the other hand, is furious. Everything from the collarbone up shares the same crackling fireplace hue of her hair and she wastes no time getting right to her objective.
“Did it ever occur to you how selfish you're being?” She paces around my living room, shouting. This is the first time we’ve tried to talk about my decision to stop treatment.
“Did it ever occur to you that I could ask you the same question?” I sit, white-knuckled in my favorite easy chair, listening intently. The coffee table in the middle of the living room creates a demilitarized zone between us.
“You cannot just not do treatment, Jen. That’s not just an option you have.” She gesticulates with wild motions, her voice increasing in octaves as she goes.
“Well. Actually, Kate, it is. An intensely enticing one at that.” I pause, waiting for her inevitable retaliation, hoping for cease-fire.
“You can get better. I know you can get better. You know you can get better. This isn’t as bad as it gets, Jen. Jesus.”
I pause for a moment. “No, stage four is about as bad as it gets. It is as bad as it gets. Remission is kind of a far-off dream, but I can buy some time,” I am instantaneously defeated as I realize how much “time” costs, and at how easily I will bend to her will.
On some level, on a lot of levels, Kate and I love one another. For a variety of reasons far too complex (read: stupid) for either of us to understand or articulate, we are terrible at showing it. Kate reminds me of forest fires and hurricanes. She can only be admired from afar, and she reminds me of why natural disasters are named after people. Regardless, there’s still a sense of shared obligation between us. I know that being so nonchalant about my demise is going to hurt her more than I intend it to.
Three months ago, when I found out that I had lost the genetic lottery for the third time, I was beside myself. You gotta play to win, the Lotto slogan goes, and I do not remember ever picking any numbers. It's a unique experience: being told you have six to eighteen months to live when you are twenty years old. I am sure there’s a lot of significance that I do not understand embedded in those numbers, but I am not a math major for a reason.
On my first trip home after finding out, that I am yet again, living with a life-threatening disease, suddenly my mother is a lot less preoccupied with whether or not my GPA has risen between terms, or if I am looking for a job after graduation. This is the thing about cancer. Some people call it “perspective”. In reality it is this bizarre re-imagining of life as this vast landscape of opportunity in which everything is of the essence. I do not think that’s right. I do know that I no longer have the luxury of being Just-Jen. I have been afforded the opportunity to be red-lettered as Cancer-Jen.
I am sitting in the waiting area of the Lombardi Pediatric Cancer Center with my feet up on a Tonka Truck, mostly hung-over, waiting for my oncologist. This is not how I intend to spend my first day home over break after wrapping up an abysmal fall term. But…mothers do what mothers want, and, whenever I return home, my mother always loves to surprise me with doctor’s appointments.
I have watched the sun rise over the lacrosse field at Georgetown University more than I have watched it anywhere else. I have walked the halls of the fifth floor in the CCC building, IV pole in tow, comforted by the static hums and melancholy beeps of life-sustaining equipment. Strangely enough, every time I come back to “visit” my second home, panic washes over me.
“Jenny, it is so good to see you,” Dr. Shad wraps her slender arms around my shoulders, her endearing accent smoothing over my already blunted axons. Usually, I am not much for affection, but I will take this subtle act of executioner’s sympathy.
“I am going to be honest with you,” she motions toward my films, backlit by the viewer that hangs above her bookcase, “It isn’t good, but it's not terrible.”
I crack a half-hearted smile, the kind that strangers inevitably find reassuring despite its palpable disingenuity.
“What are you thinking?” My oncologist approaches the question head-on, familiar with the type of vague and evasive response that I always keep on the precipice when prodded.
I am much more committal than either of us expect, “I am kinda done with treatment, Aziza.” My hands shake as I say it, cognizant of what it means.
The thing that we both know about non-specified peripheral T-cell non-Hodgkin’s lymphoma (It is true: the more syllables your disease has, the worse the prognosis.) that we are not discussing is the fact that the disease will take residence wherever it wants. Have lymph tissue? It will follow. When it decides that the linings of my lungs and diaphragm no longer fit the bill as an ideal living situation, it’ll just probably move as it has before. From the lymph nodes behind my ears in the late-winter of 2011, to the lymph fluid that surrounds my brain in the early-spring of 2013, to my lungs in the winter of 2013. I guess the cells just needed to migrate somewhere warmer for the winter.
“No, I do not think so,” her response comes much quicker than I am anticipating.
“If you stop treatment now, I give you three to four months at best. Given the location of the disease,” she gestures with a paper clip at the dark masses that are supposedly my lungs, “it will be a very painful few months indeed.”
I am initially irritated with the fact that my oncologist does not “think” I want to stop treatment. She has spent an exorbitant amount of money on a prestigious education. She has spent more than half of her life studying oncological diseases and their ramifications. Yet, she is lacking, quite impressively in one specific area. “Coping With A Deadly Disease 101” was never a class she took. There was no such section on her boards. Better still, there was no such section in her life. I know for a fact that Dr. Shad has never experienced cancer personally. Lucky for her, she and her family have somehow managed to beat the statistical inevitability of the disease. Blessed are the blind for they know not to ask why.
Dr. Shad is a wonderful woman, and she knows a lot about science, but she has no idea what fifteen rounds of chemo in a year feels like. I can provide you a rough approximation, however. Think of your body as an envelope. Day in and day out you are consistently opened. Now, some handlers are gentler than others. Some individuals languidly manipulate their digits in such a way that the envelope can be opened in a graceful manner. Other individuals tear willy-nilly at the corners hoping to get to whatever is inside. Regardless of whatever way you’ve been handled by these individuals, there are still expectations of your abilities. You are supposed to transport, and contain. On rare occasion, someone will take a letter-opener to you. How kind of them – to use the device whose sole purpose is to interact with you. But, fuck, that hurts, too.
As the conversation darts from treatment plan to treatment plan, I focus on the photos scattered across her desk like playing cards. In the far left corner, Dr. Shad and her husband, Tahir, at a National Cancer Survivor’s Day banquet. In the far right, Dr. Shad and Ryan Anderson, a patient who should’ve died a decade ago, but just keeps fighting. And in the middle – a smattering of familial artifacts and one photo of me and her son Zeeshan just as we graduated high school.
Over the last fourteen years I have been afforded the opportunity to develop a deeply personal relationship with my oncologist. Dr. Shad has been present for as many of my surgeries as she has been present for my birthday parties, and for that I am incredibly grateful. To be a pediatric oncologist is an endeavor that incorporates loss, tremendous amounts of loss that occurs on an almost senseless scale. And thus I am quite lucky to know her in the capacity that I do. Her fervent desire for me to continue with treatment is as much for her as it is for me and my family, with whom she is very close. I know this wholeheartedly. I know that she believes in my ability to fight and her ability to treat. I also know that she has no idea what this experience does to me.
I suppose I should be grateful for her investment. I am grateful for her investment. I know that if it were not for her investment that I would have died years ago. It is an intensely powerful thing – to consistently have the love and support of someone who believes in you more than you believe in yourself. This does not, however, preclude my being tired. There is no reason to be dealt this hand at such a frequent and continual rate. Even though I am well aware that this disease is nothing more than a genetic mistake, I cannot help but think that I am being sent a message by the universe. A message that very simply says – yo dude, you fucked up.
Over the last four years, I have only spent 691 days without cancer cells in my body. I am in pain. On the days I do not have class, I pop a Percocet and spend all day reading, hoping that the pain between my ribs will subside. I am depressed, probably. Or at least that’s what everyone else tells me. It is intensely hard to have any long-term goals when you have spent the last four years of your life living it six months at a time. That’s probably why I have not had a serious or functional relationship in three years and I do not have any plans lined up for after graduation. I have, however, done countless rounds of radiation, dozens of doses of chemo, and even dabbled in a few experimental trials. I am certain that, after this particular re-diagnosis, that I want this to be it.
I am certain about my hatred for chemo and radiation. I always have been and I probably always will be. What I am considerably less certain about is the ending of life or the life after this one, if there is one. Though I suppose that in the ending of this life, therein precludes the possibility of one beyond it. Life is simple – the heart beats for as long as it can and then it stops. Death is considerably less simple and I suppose that’s what makes me a little less certain.
It is six in the morning during the first frigid week of January, and I am sitting in the chemo chair with one arm raised above my head. Roberta, my usual chemo nurse, flushes my port with saline, happy New Year. The metallic taste floods my mouth as the syringe empties out, and blood runs back into my line. Roberta takes the end-cap of my port with the tubing of the Methotrexate bag and links them together with a satisfying click. The sound snaps me into a memory of the Legos I played with in my youth.
Looking out the window, I scoff at the sleet coming down in thick sheets. Fuck winter. Fuck this city. Fuck this. I hate everything and everyone. Most notably, I hate chemo. I do not know why I still go to chemo. Except for the fact that everyone who has ever held stock in me believes that might even beat this. Whatever that means.
Roberta’s salmon scrubs are obscured by a gown that makes her look like a midget Smurf. She signals me to lower my arm and I rest as comfortably as I can in the pleather recliner. I cannot help but chuckle at the irony – the nurse wears two pairs of gloves, a gown, and a mask while putting these chemicals into ME. Roberta’s nice enough, yet she never offers me the opportunity to protect myself.
“Why do you always come here alone?” She asks, while staring at the sixteen inches of rubber tubing cascading out of the hole in my chest.
“Never alone,” I say, gesticulating at the curled newspapers in my hand.
It's true. I have not had a physical companion to chemo since the summer, my choice. I have a litany of friends who have offered. In fact, “Take Jen to Chemo” was a shared event on a Google calendar for a while.? I carry the obituaries of several local news sources to every appointment. It'sthe cancer equivalent of reading Lolita on a crowded train full of families with children. At the very least, it keeps people from daring to sit next to me. It probably serves as no surprise that I do not make friends in the chemo room.
Tom, the resident dad of my early-morning chemo cohort, shakes his baseball-capped head and chuckles at my interaction with Roberta. The promise of slow growing, stage one testicular cancer keeps him fresh. Once a week he comes in with his Land’s End catalog woman of a wife, they sit in the corner, and they eat breakfast while Roberta hooks him up to his Taxotere drip. He usually thinks better than to engage with me.
Cancer is funny. A disease that perpetuates its own life order to end yours probably deserves at least a little commendation. That’s gutsy. Two for you cancer, you go cancer. In Sisyphean replay, I strenuously roll myself to the top of a clean bill of health once a year only to clatter back down in relapse whence I begin the climb all over again. I have begun to wear a nice, Jen-sized indent into my beloved pleather chair five times a week since I was told that my previous chemo regiment wasn’t working. The scene is always the same. Roberta or some other poor nurse will come over, flush my port, hook me up, tell me to knockback some biochemistry and they’ll come back in an hour. The chemo room is always a revolving door. Folks come in, speed date with Death, and then they head out, back to their deceptively benign realities.
Mystifyingly, I make the four-block walk home in record speed. I collapse in a heap on my couch for a few hours. Melanie typically drives me to chemo and back, but it was a nice morning and I told her I could use the walk. I do not know that anyone with metastatic disease in their lungs can ever “use” a walk, but… sometimes I require solitude, or just the company of my iPod. It is worth noting that Melanie is the only person I have met in Cancerland that I do not hate.
I met Melanie over the summer, when the cancer cells replicating between my brain tissue and skull made me a significantly less enjoyable person to be around. The summer found me just as lonely as I was sweaty, living with a bunch of strangers with whom I had no mutual interests. A doctoral candidate in genetics and gene regulation at Penn, I have to chuckle at the irony. We spent the summer bonding over coconut milk and the musical styling of Bastille (before he got big). In August, we entered remission together, and then in November I relapsed. I commend Melanie. She successfully defeated the beast in the form of stage-three breast cancer. Her intoxicating optimism is nauseating at best, but she’s yet to grow tired of me. Yet.
Melanie is smart enough not to ask questions that I do not want to answer. She is the only one of my friends who does not consistently pester me with the proposition of seeing a shrink. As a result, I am required to answer the questions she does ask. I am mostly done with my second round of chemo when she decides that it is time to talk.
“How are you feeling, Jen? And don’t bullshit me.” Melanie is staring through her windshield as she asks.
Relying upon my abysmal hearing, I let her question linger like that awkward space in which you consciously question whether or not you want to “bless” the sneeze of a stranger. I am interrupted with her voice cutting OK GO on the radio with my name, “Jen. I'm serious.”
“I feel good, Mel.” I keep my eyes fixated on a fire hydrant out the window of her Nissan.
“I swear to God. Would it kill you to just say what’s on your mind, once? Just once?” Her frustration is palpable through the intense vibrations of her voice that hum in harmony with the chorus of “I Want You So Bad I Cannot Breathe”. I feel bad, for more than the presumably obvious.
“I'm tired all the time. Nothing tastes normal. And I have so much to do – both in terms of my personal obligations and everything beyond that. Work and school and people and I just cannot…” I trail off because I feel the tears filling behind my eyes, and I refuse to let her see me like this. It's a bitch to try and see through streaked and foggy glasses.
“Hey, it's okay. It's alright. You are okay.” Much to my chagrin, Melanie knows better than to just drop it. She extends her right arm across the armrest in an effort to console. And that’s when I become the worst person in the world.
“Don’t touch me,” I recoil in the front seat, pitching a temper tantrum as if I'm approximately twelve years old.
“You don’t get to fucking touch me and tell me I am okay. You are in remission, you are fine. You are happy. You’ve got your whole goddamn life. What the fuck do I…” I stop. I cannot believe everything that’s just come out of my mouth. In an avalanche of idiocy, I have buried her.
“I – I – I. I am sorry. I – you know I – I am sorry, Jen.” Forever a diplomat, Melanie trips over her own words like a stuck record.
“Mel. You know, I…I am happy for you. I am sorry. I just,” I attempt to adjust the needle with delicacy and let my mumbling fade into the backbeat of the radio.
I hate the disease, and thus I hate myself for having it. And at the same time, I hate everyone who does not have it. I do not want to die, at least not really. This is the absolute antithesis of being suicidal. The source of rage and shame is in the will to live itself. I desire only to annihilate my diseased-self in some kind of life-affirming self-immolation. My diseased self is just an extension of everything else. Cancer is my third arm, an eleventh digit. I couldn’t get rid of it if I tried. I have tried. Being sick requires sequestration, and even though this is the type of sick that isn’t contagious, I feel the need to sequester myself anyway.
I have never felt more alone. I have the best friends in the world, an incredible support system; I could pick up my phone at any time and tell someone I need help and they’d come. I do not call. I do not text. Most of the time I do not even know where my phone is. Sometimes I hate my friends. I cannot possibly tell the people who have decided to love me in spite of my mood swings, in spite of my roid rage, in spite of the fact that I am most of the time simply no fun to be around that I do not appreciate the fact that I am only keeping myself alive for them. And at the same time, it is for me, too. I enjoy their company as much as they enjoy mine, but some days I simply cannot bear to hear, “please Jen, don’t give up.” So we’ve stopped talking about it. Cancer is the malignant elephant in a room with clean margins.
I am rewriting my will at 4 in the morning after a steroid bender makes it impossible for me to fall asleep. I owe a lot to steroids – they are the only reason I have an appetite, the only way I am functional enough to go to class, and the only way I am even remotely capable of breathing. I am three weeks away from twenty-one, writing a will. Have you ever heard of something so absurd? It is in that moment that I realize that, not only have I not been anywhere, I also don’t own anything. I have too many books, too many feelings, too many coffeepots – nothing substantial, nothing worth passing on. The act, like much of my life, seems to be a pointless exercise in futility.
I cycle through a couple more hours of angst and frustration before it is, yet again, time to go to chemo. As I throw my books in my bag, I catch sight of the sticky note that hangs in my wardrobe: “don’t die wondering”. The phrase has always been important to me, but never as important as it became when I was told of my timeline.
“Best case scenario, with aggressive treatment, you are not looking at a generous timeline. But we all know that timelines and statistics are merely numbers. So many people beat the odds,” Dr. Shad cannot look at me as she talks about these “mere” numbers.
“What does “not generous” mean to you?” I prod her for a more solid answer, kicking the Tonka Truck like a soccer ball between my feet.
“Continuous treatment could extend it. But this advanced staging…” she interrupts herself with a noise that is neither a word nor a sound. A pointed little click that originates from the back of her throat. It is all I need to know that things are not good. “Six to eighteen months, if you are not aggressive. A year and a half to two years if you progress through treatment in stages. Obviously this is all contingent upon you staying healthy.”
Suddenly everything stops. Thoughts of death and dying pour into my brain like light through splintered blinds. They’ve rooted themselves in my psyche, timeless obelisks erected in the graveyard of my brain. Ironically enough, I cannot parse them into dendrites and synapses. They constitute the ceaseless Viewfinder that has become my mind’s eye. I can shuffle through the catalogue at a moment’s notice. Blink. Shift. Blink. Shift. Blink.
Fear will take you to the internet. Well, first to the liquor cabinet, then to the internet. I mean, where else do you find the marginalized, the struggling, the bereaved but between www. and .org? Googling. Endless Googling finds me stumbling upon forums. Ceaseless forums sporting first-person narratives and numbers. So many numbers. So many unfriendly, foreboding numbers.
Time only exists in its measurement – be it through birthdays and anniversaries, or firsts and lasts. I cannot help but measure it. Time isn’t a substance that flows. Despite how infinite we are conditioned to find it, the reality is quite confining. Have you ever done the math? 150-510 days, and those are just the calculations from January. So I guess I could lop off another few dozen days at this point (90-450 days, in the event that you were wondering). I am overwhelmed by how little calendar space we are availed as people. No amount of days could ever be enough.
Everyone finds the diagnosis of cancer equally intimidating and terrifying. This is a global statement I am willing to make with a high degree of certainty. No one is told those three words, “you have cancer” and possesses zero worries about that predicament. When you start to add words like “inoperable,” and include numbers, things get more complicated. Cancer is one of those few things that have the ability to change everything. I am certain that it has everything to do with my diagnosis that the various relations I have in my life experience a period of drastic variation.
Nothing feels okay. In fact, I do not remember the last time I would have endeavored to classify things as “okay”. Certainly things are functional, things are livable. I am considerably less certain about utilizing “okay” to describe the situation, however. Most days feel like a struggle – on the rare occasion that I am not at war with my body, I am at war with my brain.
My life has been an endless shifting, tessellating, and reconfiguration of various relationships. I break things up and shatter them only so I can eventually put them back together because I need something to do. Otherwise, what would I do? If I account for all the brain space that “living with a terminal disease” takes up, then it stands to reason that I wouldn’t do very much at all. So I break things. And of course, the pieces don’t quite fit back together. And if they do, it's never in the way I want them to. They tessellate and reconfigure and form something new and this is supposedly called growth. At the end of the day, it is always the status quo – it is merely the same furniture in a new apartment.
It is the Monday after Valentine’s Day and I am late to chemo for the first time since I began treatment. I rush as quickly as I can to get out of my apartment and to the hospital. People always have something to say when you are late to chemo.
This is how some patients try to exercise control over their situation.
Some people think that delaying treatment will make them feel better.
Are you having a rough day? When my (insert family member) had…
In much the same way that sometimes the curtains are just fucking blue in literature, sometimes I am just fucking late to chemo. I am resigned to the fact that I have zero control over this situation – I didn’t choose to do chemo. And at the same time, I did. I do. Every day. In this way, cancer creates a unique brand of Stockholm Syndrome. I have come to recognize that my captor is myself and some days, I am not so bad at all. And some days I am the worst.
I occupy this strange sympathetic medium that oscillates between absolute rage and absolute understanding. On the rare days I feel well enough, I haul myself to the gym and work until I can barely make it back home. Attempting to abuse your body in the absurd hope that it’ll recognize that you’re mad at it is just that, absurd. At the end of the day, my body still wins. At the end of the day, I still have cancer.
My experience is neither unique nor heroic. Most days, my experience, like my existence is simply pathetic. I do not go to chemo because someone forces my hand; I do not go because I am resolved and determined. I go because I am terrified. I go because I am paralyzed. I go because I am not ready to die. I go because if I keep going to chemo I can exert the tiniest iota of control I possess over these ceaseless tides of replication, and that is all I have. I am under no illusion that this disease and the experience that accompanies it has played a large part in creating the person that I am. I am also under no illusion that this experience very well could and most likely will cost me my life. Cancer cannot and will not be outwitted, outplayed, outrun, and in my case, outlasted. So what’s the shame in bargaining for just a little extra time?
That’s the line that’s missing from most cancer literature. Cancer lit (it is in fact a real genre) is full of protagonists who are just so determined and certain and “warriors”. And when you are told that you have cancer, that’s the expectation. That you will bend over backwards, and walk through fire, and all of those great idiomatic phrases that mean nothing other than the fact that you are prepared to die a martyr. Manuscripts, ceaseless manuscripts of how much the experience has somehow switched the contrast off on all the images one encounters in their day-to-day. Suddenly flowers are brighter, and food tastes better and water is…waterier. There are pages upon pages about how beautiful the world is and loving one’s fellow man.
I am skeptical of people who think this way. This is not to say that I do not believe that they very much feel this way. I just wonder if it ever comes without the fanatical appreciation for what is, at its very core, a very unfortunate situation. Personally, I have lost too many people and far too much to this disease to find its actions defensible in the slightest. It is true that very seldom will life provide you a gift-wrapped opportunity to improve yourself. Cancer does do this. , However, at what cost?
If there are some who require disease, this disease, to teach them such things, then fine. I am not and was not one of those people, thank you very much. I love life and find beauty and sources of pleasure in things on the outside and on the inside. Illness, this illness, is not an opportunity for existential awakenings. It is the very opposite of beauty or grace, it is harrowing. The principle emotions are terror, anxiety, and above all, rage. My life is not a Ke$ha song, I am not “gonna make the most of the nights like I am gonna die young”. This is probably because I have this sinking feeling that I am going to die young and there is nothing beautiful or heroic or enjoyable about that situation that a shitty backbeat could cover up.
I will grudgingly admit that there may be something about coming out on the other side. I say “grudgingly” perhaps because I do not really remember my life before cancer. Though it might sound sad to say it, I am certain that I know the person I am now way better than I ever knew the person I was before February of 2011. On the two separate times I have experienced remission, life after cancer looked significantly different than life with. I went back to running every day, I re-imagined my career goals, and I pursued things I really truly enjoyed. As I find myself back here time and time again, I have just stopped re-adjusting. I have normalized this absolutely absurd experience.
Reluctantly, I have begun to settle into this re-imagined way of living. No matter what I do, I feel like my desire to live is doing nothing for my actual ability to survive. All I am capable of doing is being a spectator. I watch someone else put chemicals into me that are supposed to do the job that my own body cannot be trusted to perform. What a tremendous act of betrayal. “Life” with a life-threatening disease is challenging. It is a chemical and physiological warMy body, hunched down in the trenches of survival mode will not allow for the direct experience of life. And thus I settle for a substitute – a little or a lot like running Windows in safe-mode.
Roberta comes around with a heart-shaped basket containing heart-shaped lollipops. I chuckle snidely to myself, caught somewhere between feeling that this being a bank where I have just completed an expensive transaction and feeling as if I am being rewarded with a consolation prize for an “ouchie,” I feel obligated to pass. I know it is a gesture of friendliness, a token between inmate and guard. Here’s a lollipop, hope this makes dying suck a little less. Or. I know that everything seems really bleak right now, but this lollipop is gonna help you get through this day. It just makes it worse.
I am often given this distinct impression that I will feel some form of happiness in the future, and this type of happiness will be profoundly unlike any happiness I have ever known. I am told that it might not be the exultant, radiant, manic joy that people often experience after a brush (or even their third…) with death. Yet I am assured that I will indeed have these moments again – if I make it out of all this alive. That would be exciting, exulting, radiating. I have this impression that what I will miss forever--and I think I may be right--are those sudden, un-cued moments of inexplicable, profound, unexcited contentment.
I have my reasons for going to chemo at dawn. I guess that’s the part where I exercise control. None of my friends is moved to get up at 5:45 every morning. That, and chemo is too great a disruption of my day to attempt to schedule it at any other time. It helps that I have seen some really beautiful sunrises on my walk to the galley, too. I guess I go to chemo with a patently absurd hope that some sense of the organic malleability of life could help me out. That it could extend these rendezvous that slice and dice my existence apart like television infomercials at three thirty in the morning – just twelve low monthly payments, but wait there’s more.
I am still waiting on the “there’s more”.
Lately, I have begun to panic. There’s a reason that I have only seen most of the people who come to chemo only once, and I am beginning to find this unsettling. In much the same way a child is filled with apprehension waiting to get picked anything but last on the playground, my sentiments are just as strong, just in the inverse. Please, please don’t pick me. There are far scrawnier, nerdier (actually, I am pretty nerdy…), more acne-prone people on this playground. There is so much I want to do. There are so many people I have yet to love. This cannot be all there is to this life.
Consistently toeing the line between existence and expiry is exhausting. Time after time I stand nose-to-nose with my opponent, and I begin to whale on it until I unsuccessfully attempt to beat it into submission (read: remission). I think about what kind of gall or what kind of stupidity must be required of an individual to spend their whole life sparring with a ceaseless opponent. And then I realize, is this not the work of life itself? We are forever running from the inevitability of death. We do everything we possibly can to stave off the potential for ourselves to turn within and destroy.
The only problem with this scenario is that the only opponent I have to face is myself. The person who sits with the cold, exhausted body on the shower floor, clothes it, and tucks it into bed at night and the person who is simultaneously killing it from the inside out are the same. Two sides of the same coin, the only thing determining which side you see is the magnitude of the spin.
These days, I spend equal amounts of time planning my funeral and doing my homework. I firmly believe that, if I graduate, I should be able to declare a double major: one in English, my field of study, and one in funeral planning. There are certain tasks you never want to leave up to your mother. Least of these tasks would be the types of things you want at your funeral. In an unfortunate turn of events, however, removing the burden from your family implicitly places it upon your friends. After all, they are the ones who have volunteered to put up with your shit; your family has that requirement.
I am having dinner with two of my best friends, Drew and Taylor, when I drop the Nagasaki of all cancer-bombs.
“If it is alright with you guys, I want you both to be pall-bearers.”
Drew chokes on his beer and Taylor drops his burger. I know this is a pretty unfair request. Drew’s forearms are the equivalent thickness of pencils and Taylor hasn’t done a complete push-up since high school. I am sympathetic to their discomfort. How does one soften the thought of carrying a coffin? As one of their best friends I am sitting across from them, instructing them on how I want things done at my funeral. In these moments I am so alive, only to have to subject them to seeing me wither and die.
“Would you just shut the fuck up? Just. Stop talking.” Taylor finishes his fries and polishes off his beer, “You are not going to die. And if you are, I am not going to carry your coffin, you selfish bitch. You can walk yourself into the underworld.”
Taylor’s assessment is fair. I feel as though I have put him--as though I have put everyone-- in an impossible position. We exist in this emotional purgatory in which every few months I do this will-she or will not-she with treatment as my body does this she-loves-me, she-loves-me not thing with itself. At the end of every cycle of treatment I have barely enough time to take a breath before everyone in my life finds it incumbent upon themselves to reassure me. They are always certain that some treatment plan, one of these days, will absolutely work. I never tell them to tell that to my twenty percent five-year survival rate.
This is how most people cope with cancer that belongs to a loved one, or with a loved one who is coping with cancer. To them, I will never die. To them, it will never be me. It is impossible to conceive of Jen’s death for everyone but Jen. Death only happens to the first character you meet in a war movie, the old guy down the street, and your brother’s college roomate’s girlfriend’s brother. And at the end of the day, I am none of those things. At the end of the day, the Titanic still sank. And at the end of the day, I am the one Googling various types of burial practices.
Did you know that if I were to opt for an air-tight coffin that it would take approximately one to two weeks for my entire body to liquefy into some grisly black putrefaction? Or, that if I opted for a wooden coffin, or something that allows for the passing of air, that within a couple of months various earth-dwelling animals will have picked my bones completely dry? Oh and wait, there’s more. Say I am into cremation, cremation is noble. The strongest of phoenixes are reborn from piles of ash, so why cannot I do the same? Well, despite the fact that I will not feel it, my body will ceaselessly expand until I explode. Isn’t dying beautiful?
I am sitting at the bar at Slainte when a stranger who strongly underestimates my potential for awkwardness decides that the stool next to mine is prime real estate. No matter that there are approximately five people at the bar, including the bartender. Location, location, location – she’s probably, no definitely, thinking to herself. Between the excessive amount of metal in her face and the ink that cascades down her arms, she has also strongly underestimated how vanilla I am. These encounters are my favorite.
“Hey, I'm Michelle,” she says breathily in my direction, yet to no one in particular. I could drop the cancer bomb now, or I could wait. The topography of my body has been so dramatically altered in the past three years that I wouldn’t trust the most adventurous explorer with that kind of challenging cartography. I also don’t pick up women in bars.
“Jen.” I offer my hand across my Yuengling. It is common knowledge that handshakes are business transactions. It is my earnest hope that she does not mistake it for interest. We make a moment of eye contact that is considerably more unsettling than it is exciting for me. I drop a five under my unfinished beer and grab my bag, “it was a pleasure, Michelle.”
When you have cancer, talking to your friends about how you would like them to carry your coffin, and talking to strange women at bars are often coalesced into the same kind of unintentional awkward. What am I supposed to say to her? What am I supposed to offer to the Michelles of various locales and weekends? Yeah girl, let’s go back to my place, or yours even, get a little tangled up in my self-loathing. I promise, when I am out of breath, itis because you took it away. I promise that there’s nothing wrong with my lungs – I am just really, really into you. There’s never a second date after you admit that you have cancer.
You would think I would be a lot more into meaningless sex since I found out that I was dying. That by this point I would have developed a strange desire to do all sorts of recreational drugs. Can’t you see it, snorting coke off my x-rays? I hear that coke makes you “feel alive”. I suppose that’d be nice, but what do words like “alive” mean to a corpse? You would think I would have dropped out of school and fled to Europe by now. You would think that I would be living out my sentence hiking and exploring and spending the equivalent amount of money that I spend to go to school.
Nope. It is nothing like that. It is not even anything close. On sleepless roads the painfully average go.
I remember being angry once. Anger is one of those incredibly underrated emotions because it can be so motivating. It is one of those things that stands you up and gets you out and gives you the audacity to say “nope, not today” to the cells over-replicating in your body. At some point, however, anger decided that it would be okay to stop paying rent. Shortly thereafter, fear and apathy moved in, cohabitating in domestic bliss.
It is 2:30 in the morning towards the end of February and I am standing in my kitchen in my boxers and a wife-beater, eating pasta from a coffee cup. Too lazy to cook, barely alert enough to stand, I recognize as I shovel Farfalle into my mouth that it is the first meal I have eaten in two days. It is in this moment of pathetic solitude that I realize that rock bottom has risen to meet me.
There are so many people who can recount their cancer stories with the mediated grace that soldiers have when they return home from war. They kiss the ground and run their hands over things incredibly slowly and savor every moment they thought they’d never have again. I used to be like that. Some days I guess I am like that. Some days I just fall in love with everything. And other days I wish I had the strength to be angry.
“How excited are you that after this dose you are done with this round of chemo?” Roberta snaps the tourniquet off my left bicep, my port blew last week and she’s a terrible stick. I am more excited to cease being a pin-cushion.
“I will be back in two weeks, Berta. You know that.” I clench my jaw as she digs for a vein with the butterfly needle just below my right bicep. Feeling sharp metal poking around the unexplored inner parts of your flesh is a bone-rattling experience. Roberta sighs, presumably frustrated with both her inability to find a vein and my propensity to be a “Debbie-downer”, she slides back on her stool and gets another Band-Aid.
“Maybe if you were a little bit more optimistic, this would become a little bit easier for you. You never know. Maybe your scans will be clean!” I do not have the heart to tell her that my journey to remission can be likened to her inability to get a vein.
The dot over a lower case “I” is called a tittle. The metal part on a pencil that the eraser sits in is referred to as a ferrule. The things that separate windows, they are called muntin. And profanities, when expressed like this: #%&*, those are referred to as a grawlix. There is no word to explain what this feels like. There is no word to explain what it feels like to be a ticking time bomb. There is no word to explain what it feels like to walk away from the one person who made you feel like you were something greater than your disease. There is no word to explain the pain and defeat that comes with feeling like you are never worth it. There is no word for this. There is no strand of words for this. I have pecked out over six thousand and none of them, not a single one of these sentences articulates what this experience is like. And I cannot breathe for it. I am overwhelmed and dissatisfied. Overworked and unmotivated. Wildly ambitious and marginally successful. My life is one long series of endless replications of contrary.
When you are in college, when you are navigating the rocky waters of young adulthood, everything you do is predicated on the presence of a future. The future. I do not know what that looks like. Life for me can be likened to that of an e-mail caught between linked accounts. I know I am going to move from one to the other – the only question is when, and how long will it take?
Last week I woke up to intense rib pain. No preamble, no trauma, just pain. After two weeks of consistent chemo I assume I am just a little worse for the wear, and I agree to yet another scan. At this point I am certain that I glow in the dark. I have become Casper: The Friendly Ghost’s far more radioactive (and attractive (just kidding)) sibling. Alerting both me and the technician to the fact that the last ten days of near-consistent chemo have done absolutely nothing, my lungs light up like well-adorned Christmas trees.
When you cease to respond to treatment, whatever next steps your medical team chooses to take are called “salvage treatment”. I do not have an adequate or appropriate response to this act or this term, simply because I am now embarking upon my third iteration of this type of treatment. Salvage, salvation, they sound so similar – relatively different implications, however. It is widely agreed upon that the salvage treatment is the last shot a patient has. Or, in my particular case, the last three shots I have had. At this point, I am attempting, with the obvious expertise of my medical team, to salvage the salvage treatment that was supposed to salvage the initial treatment. This treatment process, like this experience, is circuitous at best. It is agonizing at worst.
In music, there is a term known as deceptive resolution. This typically occurs when the sonic architecture of one chord is “supposed” to give way to another particular chord and instead is followed by a chord that is both unexpected and refreshing. Deceptive resolution is the exact inverse of what most people experience for much of life. When applied to music – you are expecting something and something else happens instead and it is marvelous. In real life – you are expecting something and something else happens instead and it is cataclysmic.
Coffee didn’t taste great today. And thus I have come to accept today as the beginning of the end. One could argue that, after fifteen rounds of chemotherapy in one year, nothing would taste very good. Or perhaps one could argue that the end is so kind as to choose to split the difference to me. Most days life does not have a very appealing effect on the palate, and I have not been as hungry lately. Life never awards you a token proportional to your effort. When I weigh all that I have against all that I have lost, I am forced to acknowledge that life has seized me.
I find myself suffering from this paralytic anxiety that I assume I derive not only from the trauma of my diagnosis but the fact that the chemo has not worked and is not working (and is probably continually exacerbated by the fact that I refuse to see a “professional”). I find myself inexplicably gripped by new phobias – a clenching sense of panic on the subway, for example, most notably when crossing a bridge. I am frequently encumbered by these sensations that time is about to stop, or that space is on the brink of bankruptcy, or that things actually cease to exist when they are obscured. And one night, when it is suddenly no longer three in the afternoon, but four in the morning, I am convinced that I am the only one awake in the world to realize this.
Meanwhile, I experience these absolutely terrifying bouts of blind rage. Directed at no one and nothing in particular; except of course – a malignant universe or myself at having sinned to deserve such a penalty. It is not because my friends and I are thoroughly occupied with our own private manias that I am unable to share my experiences with them. It is because, in the throes of them, I do not possess the faculties to recognize that they are even occurring. I am sitting in the break room at work when I am suddenly overcome with rage. In “I am really not as stubborn as I seem” fashion, my knuckles begin to assault the poorly painted concrete walls. When I feel Drew’s hands on my shoulders, it takes all of my strength to not pivot on my back foot and turn my aggression from the wall to his face. I throw my shoulder into the white board and give the wall a final kick before I crumple into myself on the floor at his feet, blood dripping from my swollen knuckles.
If I make it through this I will gain so much. And I know that I will leave something behind, something huge, a part of my humanity. In a way, through this experience, I care about myself so much more. I care about other people much more, so much more. The superb freedom that I have and I that I will continue to have, is that of a being who has already died. I suppose that it is kind of sad that I have died. I can see the sadness in my own face. When I look in the mirror these days, all I can focus on is how my body has betrayed me. There is no worship, no singing of the body electric. Most days I am certain that it would be a futile exercise. I am composed entirely of short circuits. I am dead. I am dead in a good way. Along with this sadness is this great freedom. It is exactly like a lucid dream, except I never wake up, except it feels so much like a nightmare.
I no longer have the luxury of feeling anything on a small scale. There is no such thing as a “crush”. There is no such thing as “just ONE beer.” There is no such thing as situational perspective. It is all enormous – ships vaster than the ocean, fire dwarfing the fuel. This is when I remind myself of the complex design of my momentary field of vision, forever bursting (well, not forever) with the immediate stimuli of the present and the recalled stimuli of the past. These two layers wrap around each other like two electric currents encircling some wobbly magnetic pole (and that’s the extent of my knowledge about science). Some of these stimuli will be remembered and some will be forgotten. In retrospect all of these moments will constitute some bastardization of personalized History. But you know what they say about history – it is written by the victors.
And this is where I find myself, day in and day out. Pinioned between the desires of the ones I love and my own (which are significantly less clear), I find myself teetering on the precipice. What individual sentenced to death by firing squad does not long to feel the exit wound? What twenty-year-old college student does not long to see the future in which they pretend that they don’t hold stock? And this is where I find myself, day in and day out – asking myself questions that I couldn’t find the answers to even if I tried. Cancer has cracked my spine like that of an old book – no matter what page I try to turn to, any chapter I try to begin – I will always fall in its direction.
Sisyphus was condemned to an eternity of rolling a boulder up a hill only to watch it roll back down. There is no denying that Sisyphus’ existence is sad. Life never awards you a token proportional to your effort. When I am running back down the hill I am so free. It is only during my ascent that I am forced to face the gravity of futility. When I am required to weigh all that I have against all that I have lost, I am forced to acknowledge that life still holds me. In the end, there is a one-hundred percent chance that one of my own organs will kill me. So, when I walk to chemo in the pre-dawn darkness, I have stopped looking over my shoulder. It is consistently replayed and reproduced – wake up, chemo, embrace the suck, rinse and repeat. Three months later and I have fallen into this habit like clockwork. It is a bit like checking the weather once I am already on my way to work. Huh, I think to myself, this hell is a bit warmer than I would’ve guessed.
It was Einstein who said that insanity was doing the same thing repeatedly and expecting different results. Like my good buddy Sisyphus, I suppose I’ve gone insane. I am certain that Sisyphus recognized the futility of his own efforts. Every day he was rollin’, and every day, Zeus was hatin’. Day in and day out, rolling that boulder to the top of the hill, only to realize that the motherfucker has slipped back down to the bottom. You will always find your burden, wherever it may roll.
NOTE: A shorter version of "Terminal" appeared in The 33rd, 7TH edition. Philadelphia, PA: Drexel Publishing Group, 2014.