Columns Health Not My Fight Song
The Script Characters with Cancer Are Told to Follow
Nora Feely on unrealistic storylines and tropes of characters with cancer, what it means to “survive,” gratitude and toxic positivity, and more.
This is Not My Fight Song , a column by Nora Feely on the misadventures of rebuilding her life after illness.
It starts with a premonition. Me, sitting in front of my supervisor, telling her: I can’t come back to work. I’m sick . Her office is a cramped, airless room in the last public hospital in Chicago, the one that inspired the series ER ; its walls are cracked with peeling paint, and the desks look like they were recovered from a 1950s office building slated for destruction.
The scene always ends before she responds. I never see what comes next. Just my refrain: I’m sick. It feels real, right down to the hard, ancient wooden chair beneath me.
But this is just in my imagination, a moment my brain won’t stop replaying, and I can’t figure out why it keeps creeping up on me.
*
I’m not sick. In real life, it is a freezing, blustery Chicago February in 2018, and I’ve just come from seeing patients at my job as a social work intern in the Cook County trauma unit. It’s been difficult, learning to somehow cope with daily devastation. I have witnessed three deaths in one day; I have also witnessed moments of love and support in the face of unimaginable challenges, many brought on by the inequities and racist policies of our city and country. Despite all this, I feel strangely at home in this chaotic place lately, swept up in the daily rhythm of the hospital.
“How’s the mange?” my work bestie, Madison, asks as I plop down at our desk. She always teases me for catching viruses and colds around the hospital, which she has affectionately given this blanket nickname. I am the team’s alley cat.
“Oh, just the shingles and this weird bump on my collarbone from that shit trainer. The usual.”
“That’s what you get for doing fancy things like having a trainer.” I’d tried out a training session as a sort of mange prevention, thinking it might help me bounce back faster, but the trainer had spent the session on her phone, ignored me when I told her things hurt, and pitched me a vitamin package from her GNC gig. The morning after, my whole body ached and I found a lump on my clavicle. I’d been complaining about that trainer all week.
I tell Madison about my doctor’s appointment from a few days ago. “She had no idea what it was, so I have an ultrasound this Friday. But I got these turtlenecks so I’m rocking this Diane Keaton look for a bit. I think it works, right?”
Madison rolls her eyes at my vanity. “Yes, Nora, you’re cute. We get it.”
“I went out after the appointment to a bachelorette party. You would’ve been proud of me—I did some Dolly at karaoke and made everyone touch the lump.” Madison is from Dolly Parton country, but she ignores my joke and shakes her head.
“Glad you’re getting an ultrasound. How’s your sister?”
My sister recently told her husband that she wants a divorce. We talk on the phone every day about how he waits for her to come out of her room at night, his 6’2” frame looming above her. She has become so thin that I worry she’ll disappear, but I worry more for her safety, wondering if he’ll finally crack and push her down the stairs. Each night, I wait for her text that she’s safe in bed and he’s on the floor above.
Our evening safety checks give us the illusion of control.
My supervisor cuts in. “Shingles again?” This is my second bout of angry red bumps across my chest, sparked, I assume, by last week’s midterms. “Shouldn’t you be home?”
I am tired of missing things because of my mange, but eventually go home. The fabric of my turtleneck scratches against the bumps, and they zing with pain.
On the drive home, I tell myself that in twelve more weeks, all of this will change. I’ll be done with school, and Nico and I will move to New York. He’s in the final round for a job there, closer to both of our families. Soon, I’ll have a shiny Master’s degree and only one job. The exhaustion will be gone. My life will follow the script of a 30-something on a TV show.
Everything will be fine.
*
“You sure you’re okay going to this thing alone?” It’s the morning of my ultrasound two days later. Nico is running a conference downtown, the product of months of work.
I roll my eyes and kiss him goodbye. “Yes. It’s no big deal, and you’ll be great today!” I call as he walks out the door.
I lay on a plastic table as the ultrasound tech brings a med student in with her. “You okay with someone observing?” Sure, I say, as she rubs the cool gel over the left side of my chest. I ignore the pain in my rib cage from training, though last night I had to lay with a heating pad on my side to breathe more comfortably.
What is the right way to embrace the fact that your body is trying to kill you? The tech is chipper and chatty, with shiny, tidy hair and groomed nails. She narrates everything to the student, and I listen to the gossip about my body.
“Okay, so this is the clavicle, and next the ribs?” I can tell the tech is pointing to something as she says, “see there?” Silence follows as the probe roams over my chest and around my rib cage, then back up to my clavicle again. “I’m going to just step out for a minute; I’ll be right back,” she says.
When she returns, she explains that she’d wanted the radiologist to take a look, but he’s busy. I ask if anything is wrong. Chipper once more, she says that I’ll hear from my doctor in the next few days. I wipe the ultrasound goo off, relieved that everything seems fine.
A few hours later, I’m getting my hair done when I get a garbled voicemail from my doctor. I need to go back for bloodwork. I catch the word “malignant,” and panic. But I can’t believe she’d say that in a voicemail. I’m sure this is a miscommunication. “Honestly, who does that?” I ask my sister indignantly on the phone as I drive back to the doctor’s office.
The exam room is small and warm, cocooned against the chilly day. The awkward doctor walks in, her muddy colored bob unmoving. I sit on the exam table, swing my legs and give a big smile. “Hi! Thanks so much for having me come back in. This rash is awful, I’m so glad I’m here.” I’m breathless, like I’m talking twice my normal speed.
I take in the blank look on her face. It’s familiar from the hospital. Doctors aren’t well trained to handle people’s emotions, and she looks like a trapped animal.
The doctor does not acknowledge what I’ve said. “Hi. I’m so sorry for my voicemail, I shouldn’t have said that on the phone. I just wanted you to know the bloodwork was urgent.”
I wave her off, benevolent. “No worries! I totally understand. Happy to do bloodwork. I have great veins, so it’ll be quick. Do you need me to take my whole shirt off to examine the rash?” I pull down the V-neck of my shirt, then start to take it off instead, one arm and half my chest bare. I’m such a good patient.
She looks at me like I’m speaking another language.
Has she never seen a rash? I start to lose patience.
“Did you…listen to the voicemail?”
“Yes, you told me you need a CT for more information so I need bloodwork today. That’s fine, I’m fine with it!” I reach for my shirt again.
Her tone gets a little steely, like she’s forcing the words out. “We’re not so worried about the rash. We are worried about the mass in your chest.” I sigh and point to my neck.
“Right. Are we calling it a mass now?”
A pause.
“Not that one. There is another mass. Further down in the chest, but we need a CT to know more.” Her tone is measured, cautious now.
“What do you mean a mass? What could they see on the ultrasound?”
“We just know that it is…significant.”
I do not take a beat to soak this in. I keep talking.
“What could it be?”
Her eyes widen. She seems startled by my matter-of-fact tone. I sound like I’m asking if it’s going to rain tomorrow.
“We need to see if it’s malignant.”
Here we are with that stupid word. I force her to define it. I am now cold, detached. “Do you just mean it’s generally bad, like maladaptive?” Maybe it’s some gross swelling of fluid, like when people get abscesses from strep throat.
“When we say malignant, we mean cancer.”
I feel a little door cracking open inside of me, but I shove it closed. If I keep talking, I can change the ending of this conversation, make it come to a more beneficial conclusion. I ask what else it could be.
She considers it. “Something like Lyme’s disease? Or…something that mimics lymphoma?”
This is an absurd reach, and I know she doesn’t have a real answer. She asks some follow-up questions about symptoms—night sweats, itching, weight loss, fatigue, frequent illness. Yes to all of the above. But I’d told various doctors about these and been dismissed following specialist’s visits and perfect bloodwork. I explain all the stressful factors in my life, how worried I am for my sister and how hard it’s been working through grad school. I have done everything right. I do not have time to be sick.
In the lab downstairs, they take vial after vial of blood.
Walking outside feels like coming out of a dark theater during daylight. Is the world just happening out here? It feels so unreal that I again imagine myself on one of those 30-something TV shows: woman receives bad news. Cue the world moving quickly around me while dramatic music plays.
In the quiet of the car, I can’t chatter or ask questions or rationalize. I let my brain revisit the scene it’s been imagining, the one I’ve tried to resist all week, maybe all year. I imagine myself in that little airless room in the hospital, my supervisor sitting across from me. I’m sick. I’m sick .
*
“Why’d you go to the appointment alone?”
I am in Brooklyn Heights, sitting in the fancy, maximalist apartment of a writing teacher, workshopping an essay for the first time. It’s just under two years after that day in March.
The teacher is quick to correct the student; she is strict about the workshop rule not to address the author, to act like the human you’re discussing isn’t sitting in the room. She points out that we should start with what the essay is about: “This is a story about denial. I felt a sense of dread about the narrator, who is ignoring all these symptoms about being sick.”
I’m startled by the teacher’s authoritative tone. I thought it was a story about me being a little bit psychic, the fact that I’d predicted this whole thing before it happened.
A classmate replies, “Yes, and why so much about the sister’s divorce? It’s distracting. I don’t see what it has to do with the story.”
Ah yes, “the story.” Because I’m not allowed to speak, I can’t explain that these events are inextricably linked for me. This is the story: The week I was diagnosed, Nico got a job in New York, and they gave him one year to work from the Chicago office while I did treatment. That year included a surgery, fertility treatments, nine weeks of immunotherapy, six months of scorched earth chemo, 90 days of recovery, then a move from Chicago, our home of eight years, to a terrible apartment in Brooklyn. In my hospital room, my sister and I planned her own move, and while I was in treatment, she made the leap. It was the first of many major life events that I’ve missed. Almost one year after the move, 16 months after treatment, I am fatigued every single day.
Gratitude and rage can live side by side. On TV shows like Parenthood , Jane the Virgin , or Sex and the City , though, the story proceeds like this: a secondary character (not the main character, as that would be a downer) gets cancer for one season. They quietly find out they’re sick in a fancy, book-lined office sitting in a nice leather chair (not sitting on an exam table with their shirt half off). Next, friends and family struggle to come to grips, then rally for the character’s “fight.” We all cry.
Another student, one of three younger white women I’ve nicknamed “the MFA girls” because they’re workshopping application essays, chimes in. “She is obviously not fine; it’s crazy to read about someone who is so obviously sick and refusing to see it.”
“Why did she talk so much about her work? And how she’s cute? It’s so self-important.” This student is the real writer in our group, who’s already published a book. I’m pretty sure she hates this class of novices.
I can’t explain that my work comprised an enormous part of my identity before I was sick. That the fiery person who worked 14-hour days for things she cares about is gone now. And that I was cute as Diane Keaton, that I was fun and lively in the before time.
“How did someone who works in a hospital not immediately think cancer? Doesn’t everyone know a lump means cancer?”
This time it’s another of the MFA girls, certainly a cancer muggle, and I wonder if she’s ever found a lump on her own willowy body. I laugh almost sheepishly as the teacher chimes in, “I thought the same thing!”
My favorite classmate, a sweet 22-year-old guy hoping an essay class will improve his standup comedy, turns to me. “This all sounds terrible. But you’re okay now, right?” Wide-eyed, he looks me up and down as if he might find an IV poking out of my arm. I’m glad that the port device in my chest is hidden beneath my sweater.
The teacher tries to cut us off, but I feel a need to comfort him, so I ignore her.
“Oh yeah, I’m fine, healthy now!”
He asks what kind of cancer. I tell him lymphoma (not to be confused with Lyme’s disease mimicking lymphoma), then smile and explain that we’re coming up on two years since my diagnosis. “And I’m here! It’s amazing. I’m so grateful.”
For just a second, I let myself listen to my body. I can feel the fatigue start to lap at me like a tide coming in. My brain is easily overwhelmed these days, and the walls crammed with art and animal heads are dizzying.
I try for something a little more honest. “It’s been hard to bounce back. It’s definitely been an adjustment and shifted my career prospects.”
They nod. Of course , someone adds, because the inevitable response of cancer muggles is to pretend this is normal. Like grief, illness and healing are nonlinear, and scary enough that people don’t want to get too close. They want to believe that in my place, they would be fine.
I fall silent and glance at the clock. Just 30 minutes to go.
The teacher looks relieved that I’ve stopped talking during the hallowed workshop process. The class returns to wondering how “the narrator” (me, the person sitting next to them) couldn’t see what was coming.
When I wrote that essay, I’d believed my reaction was the right one. I went to the doctor right away with every new symptom. I didn’t make a fuss, just did what needed to be done. Now, I’m being told that I didn’t react enough. But what is enough?
What is the right way to embrace the fact that your body is trying to kill you?
*
As my classmates continue their critique, I’m resentful that they’re blithely talking about this like it’s an elementary school lunchtime argument in the distant past. They think this is all over now, that the cancer is gone and I’m just like them again.
But this is not an accident. It is the consequence of the pervasive cancer character script, which has a clear sequence of before, during, and after-cancer seasons.
On TV, there are some key moments in this script: after the aforementioned classy diagnosis comes chemo, usually represented by losing their hair, throwing up, starting to smoke weed (bonus if it’s a mom who you think would never, lol!), and making a friend at chemo. All the characters struggle, but phrases like “the strongest person I know” are uttered a lot and things turn out okay. Unfortunately, it is narratively required that the chemo friend die to remind everyone that people die of cancer. Bonus points if they leave behind a note that tells the cancer character to go live their one wild and precious life.
Those are the options: you are either the dead chemo friend or the inspirational cancer character. After you finish treatment, you get a scan that says you’re okay. I have yet to see a show where treatment doesn’t work the first time, a frequent occurrence in cancer world. Magically, you move on unscathed by treatment, with no obvious lingering issues.
On Parenthood , Kristina’s cancer season ends with her in Hawaii, bounding toward the ocean holding her husband’s hand. We next see Kristina six months later in a bar, asking her husband to go to a motel and have sex with her while “Let’s Get It On” plays in the background. “Life is a gift, and last year we went through so much stuff…Carpe diem,” she says, arms wrapped around his shoulders. Her adorable curly hair shows none of the post-chemo color change or awkward peach fuzz that plagues real people. She hasn’t even lost her sex drive, like almost every cancer patient I know.
Kristina absolutely has her groove back, hammered home for the viewer when she runs for mayor of Berkeley later in the episode. Asked why she wants to run a stunningly brief six months after treatment, music swells and her eyes glisten as she replies, “I feel like I’ve been given a second chance, and I’m not going to take that lightly.” We see no lingering physical or cognitive symptoms from treatment for the rest of the series. Cancer season over (Until her chemo friend dies in a later season–Gwen never had a chance in that writer’s room).
On The Bold Type , a character has trouble coping after a preventative double mastectomy. Her dad tells her that she is brave but needs to overcome her malaise. “It’s not about muddling through. It’s about embracing and enjoying your life as much as you can, every moment of it. You got a second chance at life. Your mother never had that.” No pressure, though, just a casual invocation of all that your dead mother lost. Carpe diem, indeed.
The problem is that life, particularly life touched by illness, is full of muddling.
I wish I could tell my classmates that I’ve worked hard to follow the script: I went off on a new adventure to New York, despite being sick and exhausted from treatment. I found a part-time job, started working at a yoga studio for free classes, tried to stop eating meat because the earth is melting and something about carcinogens (only to become covered in bruises and left more exhausted). I resumed my previous relationships and roles, and tried to live a life that resembled my former one, convinced my old abilities would re-emerge stronger and better like on TV, and like my oncologist told me they should.
But the script hasn’t worked out for me. I have not moved on unscathed, or gotten anywhere near my old level of energy or mental ability.
My attempts at thriving have mostly resulted in me getting lost, crying alone in subway stations because my brain is too tired to understand the maps. I lose the threads of conversations. I’ve spent endless hours in bed with headaches and fatigue. My body hurts constantly. I went from planning political events to spending days in bed with nerve pain after just attending a protest.
I’ve watched everyone else’s lives move on—new jobs, babies, moves, promotions, the daily grinds of full-time careers. A few months ago, I went to the first birthday party for my cousin’s daughter, my goddaughter. I agonized over what to wear, worried my aunts would realize I’d gained 30 pounds, finally settling on something black and billowy to cover my still-unfamiliar body. “What do I tell them I’m doing ?” I rehearsed my answers on the phone with my sister as I swept mascara through my lashes.
But I wasn’t prepared for the cadre of new parents, people my age living a life utterly divorced from the one I’d wound up in. Strollers lined the hall and the floor was filled with babies, parents hovering over them and chatting with their fellow stylish parents. I smiled some more, drank all the Prosecco I could find, and pretended that I was relieved not to be them as I recited my lines about this second-chance life. In the car, I cried the full hour from Queens to our apartment in Brooklyn, heaving as I watched the lights flash by on the bridge.
Moments of sadness like these are quickly followed by shame. I am constantly reminded that I am lucky to even be alive, by speeches like the ones on TV and by random people constantly exclaiming my luck to have been spared, but also by the deaths of people I know: a friend’s beautiful sister and mother to a toddler; an incredible musician from my hometown; a friend from cancer camp who is infinitely more kind and patient than me. It shouldn’t have been them. Should it have been me?
To be sure, in many ways, I am lucky. I am grateful beyond expression for the fact that I am not dead, and also that I had every privilege someone in my situation could have: family support, friends, financial security, a Cadillac insurance plan.
Deep down, I know there’s no good reason that I am alive instead. This only fuels my determination to at the very least appear to thrive. Otherwise, how do I justify my survival, my own second chance?
But unadulterated gratitude is difficult when the realities of life as a cancer patient, even one in remission, are factored in: scans, bloodwork, chemo, anxiety, depression, body and brain changes, worry over finances and jobs. My life, and the life of my peers, does not have the tidiness of a one-season cancer arc. Our lives keep moving, and the cancer comes with us. Our sisters get divorced, our parents get old, and our bodies continue, without an end in sight, to struggle.
*
In class, my anger starts to build. I’m angry that anyone could ask why I mention so many “unnecessary” details in my story, as if the only thread in my life was illness. I’m angry that the MFA girls probably don’t go to bed wondering if an itch on their leg is the cancer carrying out its promise to come back and finish them off.
While I wish the story of my first ultrasound was clean and inspirational, I know that it’s just about me muddling through my body’s betrayal. And now I’m sitting in a room filled with relatively healthy people telling me I should’ve done it differently. That my story should be less complex.
My life does not have the tidiness of a one-season cancer arc. Would they react differently if we saw more nuanced cancer characters on TV and in movies? What would it be like to witness the day-to-day creativity and resourcefulness that it takes to manage possible recurrences, medical debt, and careers despite frequent doctor’s appointments and lingering effects; of ongoing treatment, of fertility issues or sex lives or dating? What if people could see the dark humor that brings together the young adult cancer community?
I want people to see the messy reality of growing a new self at age 32. That I can make the most of my second chance and also hate that I needed it in the first place. Gratitude and rage can live side by side, made stronger by their acknowledgement of life as it is instead of papered over with toxic positivity. I want to see Kristina in a scene like the one in Bridesmaids, when Kristen Wiig drunkenly tears apart a human-sized cookie. Show me the sometimes-hilarious, delirious rage that comes with cancer.
But right now, in the teacher’s apartment, my fatigue headache is prickling at my temples, the harbinger of a crash, and I don’t have the energy to discuss the false dichotomies of illness, wellness, and second chances. If I just wait another 45 minutes, I can collapse on my couch, my tiny dog settled on my chest while Nico, still stuck in his recurring role of caretaking husband (his agent is negotiating for a better contract, but we’ll see how next season goes), asks if I’ve hydrated enough today.
So, just like that day in the doctor’s office, I smile, nod, and go on my way. At home, I’ll say a little prayer of gratitude for my people and my beautiful, scarred life, and then rage at the world for the failure of the script. Maybe tomorrow, I’ll try to start to write a new one.
