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By Alyssa Kitt Hanley, with photography by Ash Marinaccio
Case Study
A 34-year-old woman presented to a neurologist in Sydney, Australia, in April 2021 after experiencing a first occurrence of severe facial paralysis overnight. The neurologist (mis)diagnosed the patient with Bell’s palsy following an “unremarkable” computed tomography (CT, or CAT) scan of her cranial nerve, and suggested that the patient “meditate to reduce stress.” The neurologist reassured the patient that her paralysis will be alleviated without further intervention.
A few months later, in August 2021, the patient relocated to New York City for a PhD in theatre and performance at CUNY. She did not seek further medical advice at that time. In January 2023, after noting that her facial droop was steadily becoming more pronounced—unusual for people with Bell’s palsy—and experiencing a whole host of other symptoms, including her eye “bugging” out of the socket (globe luxation), blurred vision due to her eyelid not closing completely (paralytic lagophthalmos), rapid muscle spasms in her upper and lower eyelid, facial numbness and stabbing pains, the patient consulted another neurologist and a facial plastic surgeon in New York.
The patient noted that fear and uncertainty about the US medical system, combined with fear about the source of her symptoms and what a diagnosis would mean, were the underlying factors in the delay between her initial evaluation and the secondary one. However, she said she was aware that nerves can atrophy after one year of muscular stasis, which prompted her to seek additional treatment.
While additional magnetic resonance imaging (MRI) of her cranial nerve was also “unremarkable,” an MRI of her face with and without contrast showed “abnormal thickening enhancement” on the left ascending segment of the temporal facial nerve extending to the extra-cranial trunk. In April 2023, the patient had a surgical biopsy of the area and was diagnosed with “high-grade adenoid cystic carcinoma”—a parotid gland malignancy with a high propensity for invading nerves.
I’m the patient.
I’m Alyssa Kitt Hanley, a burlesque dancer whose choreographic ability relies on “face dancing”—perfectly timed winks, smiles, and cheeky expressions. On June 14, 2023, my surgical oncologist, Dr. Adam Jacobson, and a team of specialists performed a radical nerve parotidectomy to remove the cancer from my entire facial nerve, parotid gland, portions of my ear, and 34 lymph nodes. During this 15-hour operation, surgeons also transplanted muscle and tissue harvested from my upper thigh to my face (a procedure called a gracilis free flap) and extracted a long nerve from my calf that was used to weave a cross-facial nerve graft. The goal of this procedure was “facial reanimation”; once the nerve regrows, movement will return, and I will smile again. To ensure there were no lingering malignant cells, my oncologists recommended I undertake radiation and chemotherapy. The dual treatment decision was easy—I wanted the fastest fix with no possibility for cancer to return.
Here, in photographic collaboration with Ash Marinaccio, I’d like to share an excerpt about the second part of my treatment—the heat of radiation—which is part of a larger project that documents my journey to facial reanimation following cancer treatment.
The Radiation Dungeon: Week One, August 1, 2023
Radiation is delivered in the basement-floor bunker of the Perlmutter Cancer Center at NYU Langone Health, an academic medical center. I call it “The Dungeon,” this crypt to crisp cancer cells. The machine (a medical linear accelerator, or linac) takes up the bulk of this 32-square-foot open-floor-plan room. It’s essentially a giant vault, equipped with high-density concrete walls and lead-plated ceilings that work to contain the high-energy gamma radiation and thermal neutrons from the linac. The room is cold, and I feel an expectant sort of danger as I enter it, like I am walking to the gallows, where my sentence is read by two large LED screens displaying my treatment information. I lie on a slab and am screwed in place in my Kevlar mask (think Anthony Hopkins in The Silence of the Lambs), which is designed to both buffer my face and guide the beams. I can’t move more than a few millimeters. Once the lead-lined, neutron-shielding doors close, the linac operators are protected from exposure to the rays designed quixotically to both destroy and heal. They view me, and the behemoth machine, through cameras as they deliver treatment to obliterate my cancer cells. My Mum is allowed in as the operators prepared me, but is ushered out along with them when the doors shut.
I get a sense of how many other patients are receiving treatment in this room by the numerous rows of racks behind the machine; suspended in solemn silence are hundreds of disembodied radiation masks and torso protectors that hang eerily in wait for their hosts to arrive. For all the cutting-edge technology, each individual’s radiation armor is merely marked with a handwritten name on a piece of tape. I am isolated in here, but also strangely connected to the other slab-bound souls. I experience a sense of foreboding as the machine begins its work, but I also realize that all of us, we patients, are meant to have hope that once our time in The Dungeon is over, we will be cured.
Alone in the darkened chamber, I’m terrified. Stacked vertically above me are the “brains” of the beast, an electric gun, the electron beam transport, the x-ray target, and the gantry axis. As the arms of the accelerator orbit my head, my imagination twists the word “radiation.” I expect radioactive lasers to burn my flesh like James Bond in an evil villain’s torture lair. I stare into the “eye of the machine,” where a game of Tetris is being played by a “multileaf collimator” that causes Lego-like logs to fall—shaping and varying the intensity of the beam that will project atomic particles into my cancer zone. Parallel planks form zigzag patterns that manipulate this external beam by bouncing neon-green lasers onto mirrors that perform hypnotic choreography across my face. The arms of the machine move up and down, left and right, tilting its angle to be as precise as possible. The beams move in an arc, delivering small, squirted doses of radiation to the tumor and nerve pathways while sparing important structures like my cochlea, brain stem, salivary glands, swallowing muscles, mouth, and jawbone. Waiting in the wings to go on stage, I’ve hidden from the lights that illuminated my sparkling burlesque costumes, but in the linear accelerator, I cannot hide as I stare into my own eyes in the mirror that frames my Kevlar mask. I have no cheeky expressions left. The machine’s grinding sounds like the World War II Enigma code cracker. Despite the dramatic build of the movement and noise, the treatment itself sounds like nothing; it’s eerily anticlimactic. After the first session, I ask The Dungeonmaster, “Is . . . that . . . it? Is it over?”
My radiation oncologist, Dr. Kenneth Hu, warns that radiation accumulates. By the second half of my seven-week treatment, the side effects will truly kick in: my skin will redden, raise, peel, and open. I will develop mouth sores. My ear will become congested. My hearing could be permanently damaged. Because I’m young, fit, and healthy, in Dr. Hu’s words, “radiation should be well tolerated.” But that doesn’t prepare me for the heat that’s coming. And his cautionary comment, “You might notice a bit of fatigue,” doesn’t quite capture the smackdown of desperate tiredness.
Hair Loss: Week Two, August 13, 2023
I am also warned that my hair will get “patchy” in the region receiving treatment. So, to retain a sense of control, I shave off a quarter of my long red locks. With the bulk of hair off my surgical site, I gain a sense of freedom. I feel like an edgy punk-rocker as I proudly show off my prominent neck scar for my first sessions of treatment. To anyone that is bold or rude enough to ask what happened, I jokingly respond that I got into a back-alley knife fight or had an altercation with a crocodile back home in Australia.
Firestarter, Here Comes the Sun: Week Three
At the beginning of each radiation session, the linac machine in The Dungeon does a CAT scan that repositions my setup. Typically, radiation is only delivered for five-minute spurts, but I am in the machine for at least 20 minutes. Five days a week, for over seven weeks, I perform the latitudinal lines of a new kind of choreography: step up, sit on the bench, lie back into the hands of The Dungeonmasters. Shuffle down, set the shoulder guards to five, grasp the pegs at rung 11. Kevlar mask, scootch down, thread braid atop mask, wriggle chin, open mouth, insert bite chomp, dribble. “One warm blanket or two? Your hands are ice! Music suggestions?” The Prodigy’s “Firestarter,” or “Here Comes the Sun” from The Beatles. Lie still. Breathe.
By week three, I’ve started to feel heat differently, like I’ve been in an air fryer. As my cells incinerate, I detach from my fighting body. I become a half-ghost.
The side effects are extreme, baffling, and opposing.
Blistering bubbles buoy atop my lips.
Tastebuds are lost.
Food homogenizes into a sudsy milieu.
Sweets become tin-flavored.
Water tastes “off.” My arid mouth is unquenchable.
I gargle with aloe vera gel (AKA, slug-goop).
Nausea waves crash hot inside my tummy.
Endless exhaustion plus steroids means I sleep 15 hours a night or not at all.
My cheek tightens like a tarp trapping full-to-bursting balloons underneath. Bubbling headaches rise out of my baked brain.
I cannot think. My head is an egg, cracked during rapid boil.
I am now just a “patient.”
I am now just a health insurance code.
I am now just “Name, date of birth, what treatment today?”
I wait in freezing rooms.
I pump veins. Get zapped. Hydrate. Meditate.
I swallow 12 pills to tame the daily bodily melodrama and stabilize my crashing pain waves—opposing tsunamis of Arctic ice and molten magma.
I ice my cheek and erect icy emotional walls.
I cry constantly. Tiny tasks are insurmountable.
My Mum still waits outside every day.
Polar Expeditions in the Desert: Week Five
Being outside is an elemental attack, an environmental onslaught. Because I must prevent further harm to my skin, leaving the house is like packing for two polar opposite expeditions: I’m arctic trekking in the Sahara dunes, with layers of linen scarfs, cashmere wraps, medications, and tolerable snacks. The avenues of Manhattan are hostile; wind whips off the fabrics I swaddle myself in to bar the sun’s rays. Outings are a maximum of four hours, and then it’s a logistical battle back to bed in Brooklyn. I’m so energetically drained that I barely make it three city blocks at a time.
Chemo Freeze: Weeks One through Seven
I begin chemotherapy the same week as radiation, a brutal double sentence. I receive chemo on Tuesdays. On “needle day,” I sit in a chair for eight hours attached to an IV stand—to me, “my mate, Stan.” Nurses prep my veins by heating my arms with heat packs—the kind you crack to deliver near-instant warmth. I also receive two hours of hydration and steroids before the chemo IV eventually runs. The second those hydration bags begin, I feel a freezing flow into my veins.
Undergoing chemotherapy is willingly opting into a poisonous concoction of chemical annihilation. My sinister chilling agent is called Cisplatin. The gruesome chemical mix of anti-nausea medication (palonosetron) and Cisplatin burns my tongue. As the gloopy drugs are pushed through the IV, I taste what I imagine slugs would if they have been lurching around a forest in Chernobyl. I’m wrapped with numerous heated blankets, but continue to feel ice-chills mixed with hot nausea.
With chemo, there is no “Goldilocks period.” The nausea hits so hard after my first infusion that I barely eat for three days. By week four of chemo, my arms are dappled with splotchy bruises. I am damaged by the effects of the previous week’s beatings. By week five, it can take four to five attempts before the nurses find a usable vein.
I cry hot tears after every cold session.
The Bell Rings: Week Seven
A mix of mania and abject enthusiasm gets me through my last day of treatment. I couldn’t physically do another round of treatment, but I high kick off the radiation slab and “drop it like it’s hot” to a round of applause from The Dungeonmasters.
I sign my radiation release papers while I’m still receiving the last dose of chemotherapy.
Nurses give me my Kevlar mask to take home as a memento, noting that numerous people make art from them. They even prompt me to use it for a burlesque costume. I have zero interest in glamorizing my uncanny cranial doppelgänger or undertaking any further character development with it.
For seven weeks, this helmet protected me, but now it is just an empty shell. I experience something akin to Stockholm syndrome because the mask was both my captor and guardian. With its purpose fulfilled, I feel strangely alone, left to walk through the rest of the fire without a guide.
I cradle it tenderly in my arms as I walk out of the hospital, feeling as though the “V” on the side—the one that marked my cancer zones—now stands for “victory.”
After the Bell: Posttreatment
After my 33rd and final session, after the bell rings, I truly come asunder.
Wired and strung out, I succumb to broken sleep.
I wake parched, seeking an oasis of ice water in a glass.
A viscous film of sweat covers my skin and soaks my sheets.
I’m a broiled carcass in a vat of oil.
My pillow is sodden with gunk from my infected, congested ear. My fingertips tremor toward my blistering, scorched scar—it is itchy, dry, yet somehow simultaneously a weeping wound.
Coagulated clumps cake up. I’m petrified to cleanse the ooze-crust.
My limbs are frozen, but my stomach is hot.
I’m a towel of tepid nausea, thrown into in a seven-week washing machine that cycled hot, blasted cold, then lost its ability to drain.
My neck solidifies into volcanic rock.
I feel like my face has been peeled off burning bitumen.
I need ice, but barely make 10 steps to my freezer.
Return from the Burn: November 2023
Relieved of the onslaught from treatment, my body seeks equilibrium, but I am mentally broken by sorrow and survivor’s guilt. I bask in the natural sunlight I am now allowed, but remain somehow in a dissociative grayscale, without the pretty palette of pleasure. The cancer is gone . . . but so is my sense of self. The heat of radiation has receded, but it took with it other warmth: my own emotional warmth, my passion. The pain, of course, continues: cold hydration bags, the icy IV of chemo, the accumulated radioactive seeds, and the hot waves of nausea from my dance with the linac.
My body remembers the burn. The bruises. The battering.
Cancer Free: December 14, 2023
Six months after my surgery and three months after my last day of treatment, I go in for the PET scans that will determine whether there are any lingering cancer cells in my body. I lie painfully still for several hours with yet another radioactive material coursing its way through my system. The nurses couldn’t get a vein, everything was flat—but that’s no surprise, since I remain exhausted from the months of being prodded, torn open, pumped full of painkillers; processing chemotherapy; and being zapped within an inch of functional existence by the linac.
A day later, I get the call from Dr. Jacobson: “The PET scans came back clear. You’ve got nothing to worry about.”
I have a new face. I’m starting to see the beginnings of my smile—my cheek moving and the corner of my lips turning. It’s magical, beautiful. I am a work of surgical art.
And I can proudly say that I am cancer-free. The moment I got the call from Dr Jacobson to tell me, I felt the thick weight of worry lift, it was as though my jaw loosened, I stopped clenching, my breath deepened, and I felt confident to bask in the natural sunlight (albeit with a little extra sunscreen). I returned to Australia for Christmas with the best present, happy news for my family. While the hottest heat of our concern might have cooled with the latest scan results, I remain aware that my trickster-type cancer will be in the back of my mind for some time: while most cancers are considered “cured” after three years, my official cured status will take ten.