The Transformation From Doctor to Patient
Learning to cope, starting from scratch
Posted Sep 09, 2012
On Wednesday, June 28, 2006, I go from being someone who doesn't constantly wonder about when I am going to die to someone who does. As a psychologist who has specialized in counseling people with cancer, I always thought I'd be prepared for this kind of bad news. I was wrong.
I lie on a cold table in the ultrasound room and point out the newly dense area on my left breast. I'd had an appointment with my gynecologist a few weeks earlier and a mammogram a few months before that and had gotten a clean bill of health. But when I later found the spot during a self-exam, my gynecologist sent me here. After scanning the area, the technician calls in the radiologist, who hardly talks or looks at me as she stares at the screen.
Maybe I'm being paranoid, I think, when the radiologist tells me I need a diagnostic mammogram. Immediately. When she looks at those results, she says I need a biopsy—the next day.
I'm a naturally anxious person, so at first, I try to ignore the sick feeling in my gut. But once the doctor leaves, I realize she hasn't told me what she has seen. I chase her down, and she uses the word suspicious. Suspicious in what way I don't think to ask. But I wonder why she seems so uncomfortable.
I decided to become a psycho-oncologist during the memorial service for my friend Laura. When Laura got breast cancer at 33, I insisted she'd outlive us all, even after her bone marrow transplant failed and she joked about picking the best woman to be her husband's next wife. I regret that I never gave her the chance to talk openly. I want to be braver with others, to let them say what they need to say.
I call my gynecologist when I get home. "She already knows, honey," the receptionist tells me. "The radiologist just called." This woman has never called me honey. Suddenly, I imagine myself in a thin blue hospital gown rather than my stiff white hospital coat. Unlike most patients in blue gowns, though, I know what's ahead. My knowledge chills me.
When I'd worked as a psychiatry fellow at Memorial Sloan-Kettering Cancer Center five years earlier, my patients were already past this amorphous prediagnosis stage and well into dealing with the disease. Ironically, I'd been planning to return to work in a few months. My plans were about to be delayed.
In the morning, my husband, Rob, and I go to see the breast surgeon. His first words are a dictionary of cancer terms: ductal, infiltrating. "Does this guy already think I have cancer?" asks the unsteady voice in my head. If he were a resident and I were still a psychiatric fellow, I'd teach him to always start by asking the patient what she knows before giving information. But I don't say anything or I might cry. I've worked with too many of these guys—once you cry, they patronize and euphemize, hoping you'll read between the lines. So I hold my questions—like, Am I going to die soon?—until I get my emotions under control.
There are cancer specialists who will order a psychiatric consult when a patient shows the slightest sign of distress. When I read the list of mental health referrals from these oncologists to my psychiatric team one day, they laugh. "So, which patient cried today?" someone wants to know. These oncologists have learned many things, but apparently, comforting a cancer patient isn't one of them. They leave that to us.
The surgeon looks at the forms I filled out beforehand in the waiting room. "You're a psycho-oncologist? You counsel cancer patients?" he asks. I nod but otherwise keep mum, missing a golden opportunity to tell him that I was the chief clinical fellow in the psychiatry service of a major hospital. But I am fast losing my identity as a doctor and on my way to becoming something else.
As the surgeon examines me, I recall the relaxation exercises I taught a patient I'll call R. during her lymphoma treatments. Breathe in deeply, through your nose, into your belly. Then I stop myself. Denial usually doesn't come easily to me, but no one has given me a diagnosis. As long as no one says cancer, I can feel safe.
On my first day of work at the hospital, our supervisors taught us a surprising mantra: "Until it interferes with treatment, denial is a patient's best friend." It lets J., for instance, sing silly songs with his grandkids as they walk down the street. "Look!" he said once, irritated with my insistence on talking about reality. "I don't have cancer, I'm not in chemo, and I'm not sitting here talking to you!" But denial isn't a steady state; we all waver between knowing something we'd rather not and actively trying to unknow it. When I brought up J.'s continued smoking and drinking during treatment, he broke out of his denial and said, "I'm dying, and you want to take away my candy?!"
At the end of my exam, the surgeon says something that stops me cold. "I feel so bad for you…and you work with cancer patients, too." Oh, no! I think. My case must be one of the worst he's seen. I think of another lesson for residents: Don't say you feel bad to a patient without explaining what you feel bad about.
Sometimes, we psychiatry fellows played a game called Guess My Cancer. We'd throw out our symptoms—bone stiffness? Sarcoma. Depression? Pancreatic. Or a bad day at the office. When everything is a sign, nothing is, and it's easier to believe you are healthy.
"You realize," the surgeon continues, "that if your biopsy comes back benign, it will be a discordant finding with the ultrasound." In other words, my ultrasound looked bad. That's why the radiologist was uncomfortable; she must have thought I had cancer. So had the receptionist who'd called me honey. All those nice folks being nice to the Cancer Patient, my new identity.
Often, a cancer patient sees life as divided into before, which she recalls almost nostalgically, and after, which overwhelms everything before. I try to help her maintain some continuity: If she is a mother, I remind her that she still has kids to care for. If she loves renovating houses, there will eventually be cabinets to replace again.
At home, I'm greeted by my obliviously happy boys, Max, 10, and Isaac, 5. Isaac immediately demonstrates his newest trick—arm farts. For a moment, I forget my terror and just giggle. Then I start to calculate: How long do I need to live to be sure Isaac remembers me? As I think of all I stand to lose, the terror wells up.
When the surgeon calls later to say we might not get the results for a few days, I feel tearful, then pretend I'm describing a patient's state of mind to her doctor: "I tend to have a lot of free-floating anxiety," I say. "It helps to have information, even if it's upsetting." He promises to tell me everything. Now that my inner psychologist has told the doctor how to treat my inner patient, I feel more in control. My before is meshing with my after.
While waiting for the biopsy results, we take a family bike ride in Central Park and see a movie, and I even manage to laugh a few times. A patient's support network is key to how well she copes. My own support network is kicking in.
On Friday, I get the call: It's definitely cancer, although it's not until weeks later that I learn the full diagnosis: stage II invasive lobular carcinoma plus stage 0 ductal carcinoma in situ (breast cancer cells that haven't yet broken out into surrounding tissue).
When I met new patients, I always asked the story of their diagnosis. Often, they'd begin with a symptom—for E., a lingering cold, for J., a dry cough. Next, I'd hear about a trip to the doctor, the tests and waiting, the jolt of the diagnosis, and then the entrance into a world with a shocking new set of rules. By the time I saw these mothers, fathers and teachers, they'd all learned to become cancer patients.
My prognosis is very good, but I sometimes cry over the next few weeks as I get a second and third opinion. The third surgeon begins by asking gently what I know before outlining my options. For that reason, she is the doctor I choose, although there are no gentle ways to describe the treatments—cutting, burning, poisoning.
But first comes the double mastectomy. My MRI has shown a potential hot spot in my right breast, and I'm not taking any chances. Besides, it's tough to match a perky implant to the droopy D-cup of a 43-year-old. I decide that having lopsided breasts would bother me more than a smaller matched set.
Many of my patients can't replace their lost parts—sections of J.'s lung; chunks of pancreas for S. G. even had parts of her mouth removed, making it hard for her to talk when she needed to most.
I thought my training would make me feel less helpless against things like cancer. Now I know there's no preparing. But when I recall what others have dealt with, it's hard to feel sorry for myself, even as I start chemo the week Isaac starts kindergarten.
I discover, this time from the inside, that cancer sucks, but my boys still crack me up with potty humor that only having this disease could have taught me to appreciate. I learn that you can spend the hours before chemo in dread or enjoying the music your husband puts on, like the night he plays songs with the word lucky in the title. And I think of Laura, how she kept teaching with a beret covering her bald head, doing what she cared about for as long as she could. As the Yiddish saying goes, You can't control the wind. But you can adjust your sails.
Nearly five years later, I no longer wonder when I'm going to die. But I'm more aware of my fears, which makes them less intimidating. Maybe that's because I'm also focusing on what I care about most: my family, writing and, once again, my work helping cancer patients. Except now I'm armed with the knowledge that many things happen, some good, some terrible. Meanwhile, we do what we are born to do—adjust our sails—and live.
(an earlier version of this essay appeared in SELF Magazine in April 2011)
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