When I first heard the word that would give me rage palpitations, I was sitting in a chair in a doctor’s office, quietly tearing off the label on my water bottle. When I’m nervous, I rip things to shreds.
The occasion was truly nerve-wracking: I was about to find out whether my boyfriend had cancer. But even before we had the diagnosis, before we even considered the word “chemo,” I knew that my life was about to change in irreversible and terrifying ways. Then I heard the word and it washed all thoughts of death and illness from my mind, replacing those huge fears with one shallow thought: Don’t fucking call me that.
The nurse had asked a simple question, one I don’t remember now, but I do remember how it began: “As the caregiver…” Caregiver. Caregiver. In the span of two weeks, I had been transformed from girlfriend—a term that bounces off the tongue with frivolity and fun—into a “caregiver.” The new title stuck hard and fast, like a pill swallowed down a dry throat. It lit a blaze of anger inside me, a defiant flame that still hasn’t quite burnt out.
The road to cancer was as swift as it was cruel. It all started with a strange lump near Garrett’s left collarbone. He noticed it when we were canoeing and thought it was a problem with his muscle, one that would go away with a little yoga and rest. Two months later, he finally saw a doctor, a bone-and-muscle guy. He took one poke at the strange lump and told Garrett to book an MRI. “It’s a lymph node, not a muscle,” the doctor said, as though it were obvious. Two weeks later, after the test had been completed, the doctor called him with the results. “Are you at home?” he asked. “Are you sitting down?”
Garrett’s tumor was larger than a quarter and semi-hard. It rolled around under his skin when I touched it; its mobility and strange texture made me nauseous. (Much later we learned that the mass was marbled gray and yellow, sickly colors fitting for the tumor’s calamitous nature.) The MRI showed several other growths in his chest, but we didn’t know whether they were malignant. We wouldn’t know until after he had gone through surgery to biopsy the “growth,” as they were calling it then. We wouldn’t find out the name of his disease for weeks, though I had familiarized myself with the possibilities. Hodgkin’s Lymphoma. Stage II. Unfavorable.
In a few short weeks, I went from being the girlfriend of a man while a slightly painful shoulder to the caretaker of a man with blood cancer. Trust me when I tell you: that’s the kind of transformation that makes your head spin ferociously. It’s the kind of shock that makes your stomach hurt constantly, tied in anxious knots. It makes you feel dizzy with anger and exhausted with grief. You manage to forget it for a moment, and then it hits you again, a sucker punch to the gut. Cancer. Cancer. Cancer.
But of course, life goes on, as it does. You make a treatment plan. You drive down to Boston to talk to a specialist at Dana Farber, where you hope to find more hope. He wears a dark and somber suit and his impeccably trimmed beard lends him an air of confidence and precision that you find comforting. You become accustomed to hospitals and their strange smells and their terrible color palates, all gray-tinged mauves and weak-willed turquoises. You spend some time crying, sure, but you also spend time drinking on your porch as an unseasonably warm May brings beads of sweat to your chest and a tan to your shoulders. You fight with your sick boyfriend, because sometimes even sick people are assholes. You laugh and you have sex, familiar and joyful, limbs twisting happily around each other. He’s not dead yet. Neither are you.
In Illness as Metaphor, Susan Sontag wrote:
Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.
But what this brilliant quote doesn’t tell you is that when you fall ill, the people who love you are forced to use their passports, too. We may feel like expats in a country not our own, but we’re there. Interlopers in the land of suffering. As soon as Garrett was diagnosed, I received a stamp of my own. I proceeded to the waiting area, which is where you hang out when someone is sick. The entire process of cancer involves a lot of waiting and waiting and waiting. We waited to talk to doctors; we waited to see nurses. We waited to get the results of each new test—one for his blood, one for his lungs, and one for his heart.
The test for his heart was probably the easiest for him, and selfishly, the hardest for me. As I watched a nurse squeeze jelly onto his back, I started feeling anxious. By the time the images of his heart were broadcast on the screen, tears were prickling in my eyes. This was my first ultrasound. I’m 28. I wanted the nurse to be squeezing cold jelly onto me. I wanted Garrett to be holding my hand as she searched for a smaller heartbeat, a fluttering in my stomach. I never wanted to see his heart on the screen.
Once the initial shock and pain began to dull and fade into an awful new routine, I realized something: I am not the protagonist in this story. It’s hard for me, but it’s true. In the story of Garrett’s cancer, I am a supporting player, even in my own mind. Maybe to some people, this seems obvious, but as a writer I’m used to constructing a narrative out of everything. I sometimes pretend, in my head, that I’m being interviewed. That I’m telling my story, over and over, in various voices and various words, all of them charming and devastatingly brilliant. But those silent interviews went away. The story shifted, the camera zooming from my character arc over to his. It felt strange. It felt right.
A month after his diagnosis, just before he started chemotherapy, Garrett got down on one knee in our driveway. He pulled out a small box made of wood. A piece of moss was inside, and on the moss, a ring. He asked me to marry him. I said yes. And just like that, I got another label.
But you know what? “Fiancée” doesn’t feel any better. It feels silly and strange on my tongue. We can’t say it to each other without putting on voices. “Where’s my intended?” he calls upstairs after getting home from work. Or another time: “We’re en-fee-ahhhn-ced,” I yell from the bedroom when he asks me to put away the groceries. “I don’t have to follow your orders yet.” (I did put away the groceries, just for the record.)
And then, of course, I have to deal with the comments of well-meaning friends. “I knew when he got cancer he was going to propose soon,” said one, as though the two things were somehow tied together. Other people asked the typical questions. “Have you set a date?” “Where are you going to tie the knot?”
How do you tell someone, gracefully and without making her feel guilty for asking, that you’re going to wait until his white blood cell count is no longer decimated before you start planning a party? How do you explain that you’d like your husband to be able to eat his own wedding cake without barfing it up? How do you tell someone that you’re figuring out how much medical debt you’ll be facing before you reserve a location? How do you respond to these questions that get under your skin like fishing barbs, though you know they’re asked in kindness?
Here’s what I do: I make jokes. I ask the well-meaning inquisitors which veil goes with chemo, which dress pairs with a hospital gown. I tell them we’re getting married in the New England Medical Center and the whole contingent of old men who hang out there—dubbed the Chemo Club by its surprisingly loud and boisterous and fittingly bald members—will sing a cappella at the reception. I tell them the color scheme is puke green and Adriamycin-orange. For the most part, people who know me laugh. They’ve heard my dark humor before; they know this is how I deal.
And for the most part, the doctors laugh, too. Nurses stop by as Garrett is getting chemo to tell him that he’s their favorite patient. “I’ll be back in a minute,” says one, smiling. “I’ll be waiting for you. I’m not going anywhere,” Garrett says as he shakes his IV bag at her. This is typical of his humor—he speaks in dad jokes and bad puns. He thrives on the sympathy laugh. “I take the shotgun approach to humor,” he says. “Throw ‘em all out there. Something will hit.” (It usually does; I always laugh.)
One day, before he heads into surgery, a doctor stops by and asks whether the patient would like some drugs to “help him wait.” “Oh man, I could use some serious help waiting,” I tell him. “What have you got? Muscle relaxers? Give me some of the good stuff.” The doctor chuckles and comes back a few minutes later to shoot the shit with us. (He doesn’t, unfortunately, bring me any drugs. I am forced to wait, without chemical assistance.)
Just last week, Garrett saw Mad Max for the third time in theaters. He came home and suggested that I shave my head, you know, out of solidarity. I asked whether it had anything to do with Furiosa. He said, “No, of course not—and while were at it, what’s that hairstyle where you shave part of your head and leave a bunch long? I think that would be really, really supportive.” I pointed out that that seems more like an aesthetic fantasy than a cancer-related thing. “But,” he said, putting on his best Tiny Tim voice and coughing feebly. “I’m sick.”
Cancer is a serious thing. Being a caregiver is a serious thing. Getting married is a serious thing. But it turns out, we’re just not serious people. We’ll do this serious stuff and we’ll do it together, because we’re partners and that’s what partners do. But we will also make jokes, because we’re best friends, and that’s what best friends do. And after all this stress over labels, I’ve realized that’s the one I identify with the most. He’s my bestie. And I’m his.
Illustration by Tara Jacoby.
Katy Kelleher is a writer and teacher who lives in a small house in Portland, Maine with two dogs, one man, and lots of plants.