“You didn't tell them yet?”
I gripped my full coffee mug more tightly. The intern gazed down at her shiny clogs.
“So you knew the results by 7 o'clock last night, but Jake's parents are still waiting to hear them?” My frustrated voice rose above the usual morning chatter as the day team greeted the night team in the residents' conference room.
“Well, we got really busy with admissions. It was 3 in the morning when I finally had time to talk to the parents, I didn't want to wake them,” the intern said quietly, fiddling with the candy wrappers in her white coat pocket.
Jake, a scrawny but energetic red-headed 16-month-old, had been admitted to our general pediatrics service the day before. He'd been vomiting daily for several weeks; his parents were anxious for answers. The first day's round of testing—an abdominal X-ray, an endoscopy, and several blood tests—were unrevealing. However, his growth chart raised concern. Instead of a graceful arc, the plot of his head circumference jolted upward exponentially. Measuring squirmy toddler heads is difficult, and the margin between normal and abnormal is narrow—a single centimeter off can produce a false picture. But perhaps the appearance of an unusually growing head and frequent vomiting meant something more nefarious: hydrocephalus, hemorrhage, tumor. We needed to scan his head to be sure.
We discussed the need for the computed tomography (CT) scan with his parents gently, trying to strike a delicate balance, mentioning the rare and scary conditions we were looking for while avoiding an unnecessary fright.
“So there's a chance it might be cancer?” Jake's mom whispered, her eyes red and glassy with exhaustion.
“It would be very unusual,” I said, trying to lessen her fears. “But even though the chance is small, it's not something we would want to miss. That's why the scan is important.”
“Well, do what you need to do. We'll hope for the best,” his father said curtly, an arm around his wife's shoulders.
Around dinnertime, Jake, swaddled in a large starched sheet, went through the donut-shaped CT scanner. The radiologist reviewed the images nearly instantaneously, dictating a report promptly. We had asked the night team to prioritize giving Jake's parents the results; they didn't deserve to have to speculate any longer than necessary. But the morning arrived with our request unfulfilled.
“I thought we had made it clear how important this was,” I scolded. “Those parents just endured hours of unnecessary stress because you didn't follow through.”
The intern's weary eyes welled up. I realized my tone was harsh and unhelpful.
“I'm sorry, I know you were trying to do your best—these nights can be rough,” I said. “It's just that waiting for such important results can be agonizing. It's important for us to remember that.”
She murmured a “sorry, um, thanks” and shuffled her papers into a semblance of order before beginning our signout of the dozen overnight admissions.
My exasperation came from a deeply personal place. Just before starting rounds with Jake's family, I thought about the many moments I have spent waiting myself, my own life suspended on a diagnostic edge. Every 3 to 6 months for the last decade, I have been scanned from chest to pelvis, looking for the return of the cancer first found when I was 25. Once cancer interrupted it, my life became marked by periodic scans searching for my cancer's return. This brought a nervous wait—what many cancer patients term “scanxiety.”
The time between scans can feel deliciously long—months of forgetting, of pretending, of dreaming, even a bit of planning. It is time is to be cherished. Yet too soon I am back in the hospital gown. The IV is placed, the contrast courses coolly through my veins, the scanner whirs; I return rapidly to patienthood. I am now at the mercy of my doctors, left with my worst thoughts and fragile patience as I bide my time until my verdict is read. Time becomes remarkably elastic—long, then very short, then long again—as I wait. I imagine both the devastating and the uplifting, suspended between two very different versions of my life.
At first I had my scans on Fridays. My doctor told me the results on Mondays. Those were strangely dichotomous weekends, with time spent in either fervent hope or resentful acceptance. It felt sweeter to just forget it all, to defer either option and indulge in a few days of denial.
Years after my initial diagnosis, the hospital found a way to scan patients within hours of their appointments, which brought a welcome compression to the waiting. My scanxiety then became contained to the clinic waiting room, where I sought the banal and trance inducing, swiftly paging through celebrity gossip magazines or playing solitaire on my phone. I would occasionally look up at the other patients and their entourages, each with his or her own waiting rituals—laughing or crying, silently sitting or incessantly talking, staring at the ceiling or floor. My husband became my partner in waiting. He would try distracting me with bad jokes and Styrofoam cups of weak Lipton tea.
Suddenly the nurse would call my name, her voice breaking my wait. It was a false alarm—just a summons for the measurement of my heart rate and blood pressure. They were always too high, and seemed higher still when I was sent back to the waiting room. Later—sometimes 30 minutes, sometimes 2 hours (one could never be predict it)—my name was called again, this time to enter an exam room, where I yearned for a prompt knock on the door. It never seemed to come soon enough. My husband plied me with silly YouTube videos. My tea went cold.
It's during the three dozen times I've sat like this, restless in pleather chairs, anticipating once again potentially life-altering news, that I've thought about the waiting—how to make it less agonizing, more palatable; how to make it feel less lengthy, more productive.
There may be the rare patient who has reached a certain level of Zen, for whom waiting is no longer stressful. But for me, the waiting has been the most stressful part of my illness. Was there perhaps a way to reduce the time between my scan and the appointment when the results were revealed? Or would it be possible to post estimated wait times in the clinic? I wish someone had asked me how I preferred to hear my results—alone or with family, over the phone or in person, on a Friday afternoon or a Monday morning. I could have asked for more help coping with uncertainty. A few simple measures may have shrunk my scanxiety, the size of my fear.
The rap on the door always startled me. Thankfully, my doctor knew that this was never the time for small talk, or even a brief greeting; the usual pleasantries of “hello, how are you?” were obstructive and unwelcome. He knew to stop the waiting straightaway, declaring the news of a clean scan as he opened the exam room door. I was so grateful. He entered, greeting me with a wide smile.
I channeled my own oncologist as we headed toward Jake's room at the end of the hall, the first stop for rounds. On the way, I pondered the waiting rituals his parents could have practiced that night. Had they slept much? Or had imagination and Google and the dark of night heightened their unease?
The door was ajar. I knocked, while simultaneously and loudly exclaiming, “His scan is totally normal. No cancer, no blood, no fluid. Nothing there but a normal, healthy brain.”
His mom turned her gaze to the ceiling, clasping her hands together silently. Jake popped up from the sheets, rubbing his sleepy eyes and staring toward us. His father tousled Jake's bed head, exclaiming, “See, buddy, we knew you had a fine brain!”
The wait was over.
Published online: May 13, 2017
Julia Michie Bruckner is an instructor of pediatrics at University of Colorado School of Medicine and a staff physician at Colorado Children's Hospital. She writes online about life as a cancer patient and pediatrician (http://www.juliamd.com/) and contributes to Discover magazine's Vital Signs column. This is her first “In the Moment” submission.
Published by Elsevier Inc. on behalf of Academic Pediatric Association