There's no textbook for when your father is dying

On my first day of medical school, my father, a dentist, told me he’d just been diagnosed with stage four pancreatic cancer. Cancer had crept back into my life — except this time not into my body.

At age 12, I was diagnosed with brain cancer. After an aggressive surgery, I was tumor-free for 10 years. Then, at 23, I received the news of an inoperable recurrence.

While going through radiation and chemotherapy, I struggled with how to move forward in the face of endless uncertainty — until I realized that, with or without cancer, everyone lives with uncertainty. Since I never knew what the next day would bring, I decided that the most important thing wasn’t where I wanted to be in 10, 15 or 20 years but how I wanted to live now, in the present. So I applied to medical school.

Given how long it takes to become a doctor, this decision may seem absurd. For me, however, living in the present meant fostering human connection, and I felt I could do that best as a physician.

A year after finishing treatment, I was accepted into the UC Berkeley-UCSF Joint Medical Program, and a few months later, I moved from my hometown, Boston, to Berkeley, drawn both by the program’s unique qualities and by the chance to live in a place where I could put down roots free from the history of my illness.

At the end of day one of orientation, while my new classmates ordered ice cream at a shop close to campus, I stood just outside, talking on the phone with my father.

“How are you, Dad?”

“They want me to get a liver panel to check my bilirubin, AST and ALT to make sure my liver and bile duct are all right,” he said. “Then we’ll see what chemotherapy I’ll start on.”

It would be months before I learned what all those words and acronyms meant, and I didn’t want to know about the tests anyway. My mind roiled with flashbacks to my own diagnoses — the sinking feeling in the pit of my stomach as my future suddenly became hazy. I just wanted to hear how he was holding up and how he felt about his illness — the feelings so seldom talked about in medical training.

“How are you, Dad?” I repeated.

“It is what it is,” he replied. I wanted to press for more, but perhaps, having dedicated his life to the practice and teaching of dentistry, he found clinical language more comfortable than that of the emotions.

That same week, my class had our first anatomy lab. Before entering, we sat in a circle and shared our thoughts and feelings regarding what we were about to experience.

My thoughts swirled uncontrollably. I tried to forget that, when talking with my dad earlier, he’d said, “Maybe I’ll donate my own body.” I wondered if I would, or could, do the same when the time came.

I recognized the magnitude of this moment — how privileged I am, as a medical student, to learn about the human body in such an intimate way from someone I’ll never know. At the same time, I felt a rising uncertainty.

Who am I right now? I thought. Am I a patient, a son whose father has a terminal illness, or a medical student? Do I need to choose? I didn’t know.

As my classmates and I followed the teaching assistant to the cadaver at the far end of the room, my heart felt like it would jump out of my chest. We stood by the cadaver, and the teaching assistant showed us how to properly unwrap the body and gave us each a different organ to inspect.

Ironically, I was handed the brain.

The last time I’d been this close to one was on a tour of the Cushing Center at Yale Medical School. As the other applicants marveled at the displays of Dr. Cushing’s neurosurgical accomplishments, I stared at a brain in a jar whose faded label read: “Oligodendroglioma.”

My tumor, I thought.

Next to the jar, several others held brains with various tumor types: glioblastoma, astrocytoma … the list went on. But all I could think about were my friends — the ones I’ve met on my journey, fellow brain-tumor survivors, some of whom are still around, but many of whom, sadly, have passed.

Can I handle medical school if, rather than seeing medical breakthroughs, all I can see is the people they remind me of? I wondered.

Now, holding the brain, I braced for the same visceral reaction, but it never came. Instead, I felt awe and fascination that the organ I was holding governs every movement I make, every sense I experience, every thought or memory I piece together. I wondered if my lack of emotion meant that I was detaching from my identity as a patient. Was it okay to just be a medical student?

As the months passed, I often felt disoriented by my shifting sense of identity. In our clinical classes’ mock interviews, I’d opt to play the patient before being the clinician. During class discussions, I’d wonder at different moments whether it would be appropriate to share my thoughts as a medical student or my experiences as a patient. When talking through cases or listening to patients speak, was it acceptable to acknowledge my feeling of emotional connection to them?

This inner conflict didn’t arise out of an excessive emphasis on “professionalism” within my medical school, which is humanistic and encourages self-reflection. Perhaps it was a response to the larger medical culture — one in which medical practitioners with white coats and the learned behaviors we call professional are separated from their patients by an invisible boundary. Even this early, I’ve seen enough to know that it’s a culture of burnout, in which practicing doctors tell you to hold on to your idealistic naiveté as long as you can.

After two-and-a-half months of anatomy, my classmates and I finally reached a much-needed break. I flew back to Boston to visit my father for the first time since his diagnosis. We’d planned to grab lunch, but we ended up in the emergency room instead.

Although we’d spoken by phone regularly, I soon discovered that he hadn’t told me everything. In order to keep me at school, he’d concealed how fast his condition was declining.

Now we found ourselves in an inpatient room. His oncologist said the cancer had invaded his liver to such an extent that further chemotherapy would be useless. This was news to both of us. My father had known it was inevitable, but hadn’t expected it to happen this soon. It was already time to plan for hospice.

I sat across from my father’s bed as he slept. Nurses streamed in and out, the monitors beeped rhythmically, and the pads around my father’s swollen legs inflated and deflated every minute. At times, I’d glance at my father and see the man who raised me. At other times, I’d see where I might be at some point. And in a terrifying way, at times I’d glance at him and see only a patient with pancreatic cancer and liver failure.

On the day when he’d shared his diagnosis, I hadn’t wanted to think about his liver — but now, seeing him in the hospital after 10 weeks of classes, I saw in my father what I was learning in medical school.

As so often in the past, I found myself wondering, Is that normal? Is that OK?

But there was no textbook I could consult to find out how a patient-turned-medical student-turned-son of a dying father should act in a situation like this.