The volunteer coordinator holds four slips of paper and offers them in our direction. “Who wants Cancer Diagnosis?” she asks mildly.
No takers.
“Ok, how about Suspicious Test Result?”
I pull my sweater tighter around me.
“I’ll take the diagnosis,” I say.
It’s not that I choose cancer so much as I choose certainty. Here, at the five-year mark from my own diagnosis, I still live with a daily low-level terror that my cancer will come back. I stew in uncertainty.
I am one of four volunteers helping medical students learn to deliver bad news by role-playing scenarios with them. It’s my first time here. What I know about the other volunteers is that, like me, they all have or had cancer. Right now, we are cancer patients pretending to be cancer patients for students pretending to be doctors.
The volunteer coordinator hands me a slip of paper with a description of the scenario I will role-play. My character has been diagnosed with non–small cell lung cancer (NSCLC), the most common type at 80 percent to 85 percent of all cases.
I let out my breath. Not breast cancer.
The others choose from what remains: Initial Suspicious Test Result, Suspicious Test Result Following Treatment, and Recurrence. We have been through variations on these conversations before, in real offices, with real doctors. We have felt real shock, real fear, real dread. I can tell by the way one volunteer picks at the fuzz on her sweater, and another stares intently at his slip of paper, that those feelings are rising in us again.
We settle into our stuffed chairs around a table covered with bagels, coffee, pamphlets. It’s March in Boston; the windows let in a weak gloom. There are probably dust motes. This is the kind of room with air that’s filled with dust motes. We sip coffee and wait. It’s almost cozy.
The hallway door bursts open, and the teacher and her students file in, crowding onto the couch and filling the empty chairs. One of the volunteers, Walter, balding but with bushy white eyebrows, tugs lightly on his suspenders. Nina, barely ninety pounds, grips the purse in her lap. Elizabeth smiles widely, but her hand holding the coffee trembles. I brush at imaginary crumbs on my lap.
One of the med students grabs a bagel and takes a large bite. He probably skipped breakfast.
I wonder: Why do we do this? The students have to be here. But why am I here?
“First, we will introduce ourselves,” says the teacher. “Then, we’ll get to the scenarios.”
Walter goes first. He is still in the telling phase of his recent blood cancer: He repeats his narrative obsessively and in great detail, as if to check whether or not he still comes out alive at the end. I half-expect him to produce X-rays and lab results from a pocket.
I like to think I’ve distilled my experience, so when my turn comes, I briefly describe my own treatment: sixteen months of chemo and targeted antibody; partial modified radical mastectomy; seven weeks of daily radiation, all to treat stage III inflammatory breast cancer (IBC). The students’ eyes glaze over. I omit the blood transfusions, hospitalization for neutropenic sepsis, C. diff infection, et cetera. I omit the letters I wrote my kids when I thought I was dying. As I said: distilled.
I soapbox it and explain that IBC is an aggressive cancer with sudden and subtle symptoms. “In most cases there’s no lump, and it’s always at least stage III by the time it’s detected,” I declare, indignant. As if diseases owe us a chance at early detection. IBC makes up only 2 percent to 5 percent of breast cancers. It is so rare that often it’s missed or misdiagnosed. It shows up as swelling, pinkness, skin thickening. “You should know about it, and how to identify it,” I say. Many doctors don’t. This, I tell myself, is why I’m here: to make sure they do.
As Nina talks about her brain cancer, then Elizabeth her breast cancer, the students listen nervously, similar to each other in their earnestness. How do they see us, I wonder. Maybe breast/breast/blood/brain.
“Before we begin role-playing,” their teacher says, “do we need to talk about the ghosts in the room? Has anyone lost a loved one to cancer?”
Lost. I picture Kristen, Cindy, Anne, Donna, Amber, and Ellen from my support groups, wandering some foggy afterlife corridor. But they aren’t lost. Cancer killed them.
It seems impossible, but these medical students don’t have much experience at all with the disease. An aunt here, a distant cousin there.
I’m a member of two IBC support groups. I am surrounded by ghosts.
A student I’ll call Lin and I role-play first. We move out of the circle to a pair of chairs facing each other at the front of the room. As we enact my Diagnosis, the group will observe us, then they’ll critique our interactions.
Lin wears a trim skirt and white blouse. Her dark hair falls down her back. I’m in a bulky long-necked sweater, jeans, hiking boots. My post-chemo hair is short and gray. Post-chemo, or just aging? Who knows.
I probably should let Lin speak first, but she seems unsure how to start. I can’t help myself. I want to put her at ease. Noticing the imaginary medical school diploma on her imaginary office wall, I point to it and venture: “My son went to the same school you did.”
“Oh,” she says, actually turning to look at the spot on the wall behind her, her glossy hair slipping over her shoulder. “The food was so good. I ate so much while I was there!” She smiles broadly, relieved to begin this way.
What she doesn’t realize is that I am checking on where she trained, whether she applied herself. I will need to trust her with my life, after all.
I’m telling her that I have a son. See how much I want to live? Not that people without children don’t want to live just as much. I know they do.
I am finding out what we have in common. Trying to create a connection. I need her to see me as a person, not a patient. Not an expendable gray-haired lady with her life behind her.
Maybe I’m already bargaining with her. Maybe I am trying to get more attention, better treatment. But how can she know this? She seems relieved just to delay mentioning cancer.
Your turn, I think. Ask me about my son. How old is he? Does he live nearby? Do I have other kids? A partner? She could glean a lot about her patient’s support system.
Instead, she pulls out two sheets of white paper and a black marker. Props! Where did they come from? She is prepared; she is on top of this; she delivers the news by drawing diagrams. Two sketches, two kinds of lung cancer. Small cell and non–small cell. One aggressive, one less so.
Mine is less aggressive, “not so bad,” she says. Then why is she telling me about the “bad” one? I get mixed up. This is genuine. Which cancer do I have, again? She explains patiently, but now I feel suspicious—I mean, my character does. I wonder if I might actually have the bad kind. Lin wraps up, still cheerful.
“You can keep these,” she says, handing me the diagrams with a flourish.
I’m surprised to feel like someone lobbed a soccer ball, hard, at my head.
“I want you to know,” I say, stepping out of character, “that I’m not going to do it now, but in real life I might be crying.”
Lin needs to know that she is not just delivering information. She is delivering existential threat. Terrifying news.
My doctor/student is silent.
The teacher breaks in. “What would you do if she were crying?” she asks Lin gently. Lin’s eyes dart around the room. Then she hands me an imaginary box of Kleenex. I accept an imaginary tissue and hold it over my eyes.
I need her to see me as a person, not a patient.
“How was that response?” the teacher asks me. “How did you feel about her handing you the box of tissues?”
“Okay,” I say. “I’m okay with it. I can cry and conduct a conversation at the same time.” Something I’ve learned from having cancer.
A beat.
“I see that you can ignore the tears,” the teacher says. “But should you?”
I don’t answer, because she’s not asking me. She’s looking at her student, who fidgets with her marker.
Four years earlier, an intern interviewed me prior to the start of my course of radiation. Repetitive and exhaustive interviews are the price of being treated at a teaching hospital. As we painstakingly went over my recent brief but busy medical history, I felt a familiar weepiness come on. I’d been doing this weeping thing since my diagnosis. A friend called it leaking. The intern was startled.
“What’s wrong?” she asked.
What’s wrong?
“I have inflammatory breast cancer,” I said, pointing to the sheaf of papers on her clipboard and wiping my cheeks with a wafty sleeve of my hospital johnny. I mean, have you read the statistics?
Her eyes roamed the room, then settled on a sheet of information on her clipboard. She seemed to locate a question on a list.
“What’s your deepest, darkest fear?” she asked.
Seriously? Was that on the questionnaire?
“That I’m going to die.”
Obviously.
A tiny squeak came from the back of her throat.
Surely I wasn’t the first person she’d seen like this?
She ran out of the room.
Maybe I was the first person she’d seen like this.
A full ten minutes later, during which time I’d memorized every poster in the office, she returned with the chief of radiology. He was a short man, impeccably dressed in a dark suit, white shirt, and tie. His business clothes were out of place in the examining room. If I hadn’t already met him, I would have wondered if she’d found someone and dragged him in off the street. As she stood behind him, he took my hands, looked me in the eyes, and said, “Frankly, I think you’d be a little crazy if you weren’t afraid you were going to die.”
In the church conference room, Lin and I return to our seats and are replaced by other pairs enacting their scenarios. The students find us difficult. In truth, we are. When Walter’s pretend-doctor asks him if he is free to come in the next day for follow-up tests, he answers, “Why, do I have a choice?” as if the student, and not the medical system, were doing this to him. Nina insists that her doctor find a way to treat her without resorting to needles for blood draws and infusions. This obsessive fear of needles is larger, more real to her than the cancer. Maybe it stands in for the cancer. Maybe it’s just a thing she can control. The poor student clearly thinks Nina is off her rocker. They probably have no idea how often Nina’s veins have been accessed and what it’s like to be opened and sealed, opened and sealed, again and again. Elizabeth, who got stuck with the Recurrence scenario, softly tells the student she has lost her job and her health insurance. Her boyfriend has left her. She is going through this alone.
Surely the students know that we are telling our own stories?
When the role-playing is over, we debrief. The teacher asks the quietest, most dejected-looking student: “Is this what you expected?”
There is no template.
No list of questions.
There are no correct answers.
“No,” she says, shoulders slumped. “I thought we’d be taught what to say. I thought we would get a template.”
What she expected is not what she learned. There is no template. No list of questions. There are no correct answers. Sometimes the best you can do is to stay in the room.
I sign up to come back the next week and role-play with more students.
When I was diagnosed with IBC, I didn’t expect to be alive in five years. I had consulted Google, read “dire prognosis” and “5 percent survival rate,” and closed my laptop. Yet here I am. Grateful. Uncertain. Treatment and survival odds have improved since then. Still, it’s like I packed for a trip and find myself living at the airport, waiting. What do people do here? How do they live? When can I leave?
During treatment, I said yes when my oncologist asked if I would donate blood and tissue for research. That was easy: an extra slice here, an extra vial there. My samples might offer researchers information that would keep alive someone who comes after me. Who would say no to that? I desperately wanted to put my experience to use.
But empathy training is different. For several days after meeting with the students, I have some trouble getting out of bed. That’s a slight exaggeration, but not really. Why am I doing this again? I consider canceling my participation in next week’s group. I tell myself I don’t have to do it. After all I’ve been through, why go back to the bagels and dust motes and pretend-cancer?
Doctors still need to know about IBC. I still want to be of use. I want to help. Patients develop an expertise in their cancer and their care, whether they mean to or not. Here is a way I can use mine.
A week later, I am back in the church conference room with different volunteers and a new batch of students. Again we choose cancer scenarios. Again we sit in a circle and introduce ourselves. I listen as the patients tell their stories, and of course each one is different. But this time my ear is tuned to what we have in common: the struggle to sort out the narrative, to shape it into something we can live with and possibly use. When my turn comes, I soapbox it again, tell more future doctors about IBC. And again we talk about the ghosts.
Every student in this group has been close to cancer and felt loss. Jon, tall, dark-skinned, has a soothing voice and presence. He was raised on the West Coast by an uncle who would die of cancer. A young man with a brush of red hair, Conor, has a mother whose breast cancer has come back. As a medical student, he understands exactly what that means. His mother may live a good long time with her disease, or she may not, but it is terminal. From across the circle, I feel the heat of his fear, despite his gentle voice and the concern he expresses for those of us gathered in this room.
Or maybe I’m the one who feels fear. Maybe it’s not fear, but grief. For him. For his mother. For myself.
Sania tells a different story, of her upbringing in a family that won’t allow the word cancer to be said aloud, let alone the disease to be acknowledged. She can’t be sure whether or not she has loved ones with cancer.
This time, my character has a Suspicious Test Result. Possibly cancer, but nothing definite. I am uneasy role-playing Suspicious Test Result. Outside this room, uncertainty is my constant companion. If I try on a dress for a wedding that is six months away, I wonder: Six months? Should I buy it?
Jon and I leave the circle and take our turn at the front of the room. He is West Coast mellow to my East Coast edge. He sits quietly. Again, I can’t help it. I speak first, and again, I start with my kids.
“I have a son a little older than you are,” I say to him, smiling. I feel myself trying to put him at ease, thinking of my own two sons.
“Oh,” he says. “How is your son? And the rest of your family? Are they doing well?” He speaks with such warmth that I am disarmed.
“Thank you for asking,” I say, and I mean it. “To my knowledge,” I say, because that’s how I always answer that question, “To my knowledge, they are well.”
“Good,” he says, “I’m glad to hear that. Now I’d like to go over your test results, if that’s okay.”
We discuss the tests, no props this time. Jon seems comfortable with pauses, leans forward and gives me his attention. He tells me that the tests may show lung cancer. He describes the types and subtypes, the treatment protocols. I think he’s showing off his knowledge for his instructor. I’ve noticed it’s a thing the students do. They give too much detail. But my character hasn’t even been diagnosed yet. I’ll give Jon feedback in the critique afterward to not get ahead of the diagnosis. Listen to your patient, I will say, and answer their questions honestly. But take it a step at a time. Pay attention to cues.
(When I saw my own primary care doctor about my symptoms of swelling and skin thickening, she examined me for about thirty seconds and said, “You have a mass in your breast.” I’m the one who said, “Cancer? I thought cancer was a lump. I don’t feel a lump.” “There are other kinds,” she said. “Are they better or worse than the lump kind?” I asked. She paused. “They’re not better.”)
I ask Jon if he might prescribe anti-anxiety medication, and this throws him for a moment. After all, his teacher is watching, and he may not have expected this question. For that matter, I didn’t expect to ask this question. He doesn’t pretend to write a prescription but recommends that I follow up with a therapist. He will help me find one.
Nicely done, I think. This has gone really well.
Then, in a voice that sounds suddenly false, clammy, as if he’s testing something he read in an essay for a class, Jon asks: “How does this make you feel?”
I fold my arms over my chest.
“How do I feel about being told I may have cancer?” I ask him.
Something in my voice and changed posture sparks panic in his eyes.
“How do I feel about needing tests? Then waiting for results?”
Waiting. Uncertainty.
“How do you think I feel?” I say. “How would you feel?”
I say this with too much emotion. I push myself back into my seat, on which I’ve edged forward.
“Don’t ask me that,” I say. “Don’t ask my character that.”
What I could have said: I feel how much I want to live.
Sania has been tapped to enact Diagnosis of Cancer. As she faces her patient—Richard, a pale, middle-aged man who blinks behind thick glasses—she stammers. She puts her hand to her mouth as if to stop the words that have to come out. She tries again but can’t find a way to deliver the diagnosis, to say the word cancer. She apologizes to Richard, glances at her teacher, hangs her head, and returns to her seat with the other students, where one of them embraces her. Her hair covers her face as she stares hard into her lap.
“I feel so embarrassed,” Sania tells the group when we debrief. “I didn’t know what to say. I’m sorry.”
Richard tells her it will get easier.
She smiles at him, grateful, comforted.
I say, “I hope it doesn’t.”
She looks at me in amazement. How can I be so heartless?
“Even when you learn the words to say, shouldn’t it be hard? If you’re a good doctor, shouldn’t it always be hard to give bad news?”
She grips her friend’s hand tight.
I am not suggesting, of course, that she feel all of her patients’ fears. Nor should she reflect them. That’s not good for anybody. And she can’t be torn apart by every diagnosis. She has to take care of herself.
But she should feel this. She should remember this.
And that’s the bad news I have to deliver.
When it’s time to go, we volunteers express honest appreciation for the students’ openness, compassion, and willingness to do this difficult work.
“I hope it doesn’t get beaten out of them,” one of the volunteers whispers to me.
It has been an honor to be with us, the students respond. They have learned a lot, they say.
But what have they learned?
Like last week’s students, they are learning there will be no template, much as they might wish for one. They are learning to sit with pauses. They will make mistakes. But they will learn to stay in the room. Even when there is terror in the room.
I learned something, too: The patient is not the only one who feels it.
The thing about empathy training is that it goes both ways.
I stand in the doorway with Richard as he repeats his cancer story. In every group there is someone whose cancer is recent, who is trying to figure out what just happened, and who can’t stop talking about it. They sound incredulous: how could this happen to them? I heard Richard’s story at check-in. He needs to tell it again. I want to leave, but I’m held here by his tale. I notice that he’s talking to the top of my head, not really to me. I want to be compassionate. But to be honest, I’m getting tired of listening to him.
I am still figuring out what happened to me.
How to make use of it
I’m not like Richard, I think. In five years, I’ve moved beyond the telling-everything-in-great-detail phase. I carry my story differently.
But I am still figuring out what happened to me, too. How to make use of it. Not meaning, but use. Because what meaning can there be in some people get sick, some don’t? Some people die from cancer and some don’t?
I’m still figuring out how to live with uncertainty and fear. I don’t know when I’ll get used to this, or if I should. I am figuring out not only how to shape and carry my story but also when to put it down. And like Walter, like Nina, like all of the volunteers, I have the feeling that when I tell it, I’m checking that I’m still alive at the end.
Richard and I linger at the threshold of the empty room. We may be back. But for now, we are both free to leave, and we do.