Wednesday, September 02, 2020

Memento mori

Christina Shenvi recounts her husband Neil Shenvi's seizure, which led to the discovery of his brain tumor, which led to surgery, which led to timely reflection:

"Is daddy going to die?" My 10-year-old son looks up at me. Tears well up in his eyes. He looks anxiously back and forth from me to my husband. He's the spit and image of his dad, with dark brown hair, tan, quarter-Indian skin, and hazel eyes. We've just broken the news that the brain tumor, which has lain dormant for 8 years, is starting to grow again. The younger three kids look to their big brother and to us for their cues.

I don't want to lie. I don't know. He could need surgery again, which carries risks. Or the tumor could keep recurring despite treatment, like an unwelcome guest that pauses their knocking on the door, only to begin again a few moments later.

Nine years before, we had been in bed. I remember the exact time. I opened my eyes when I felt him kick me. It was 11:53 pm on a Friday, June 4th. "Stop kicking me." The bed shook. Immediately wide awake, I sat up and found him seizing next to me. I had a quick conversation with myself:

You should scream. This is an emergency.

Don't be ridiculous screaming won't help.

You're a doctor; do something!

I was barely a doctor. The ink on my diploma was still wet. It was in a folder in one of the boxes that still needed unpacking.

Should I call an ambulance?

Is this an emergency?

Is that a rhetorical question?

I'm not sure.

I was about to be an emergency medicine resident, but didn't know if his seizure constituted a true emergency. I thought back to the patients I'd seen in the ED with seizures during my rotations. In their typical course they got a CT scan, it was normal, and they were discharged home. So maybe we didn't really need to go to the ED.

We're uninsured, after all.

That shouldn't matter.

But it does.

More accurately, we will have been insured, in the future perfect progressive tense. We will have had COBRA, but we couldn't apply for it until two weeks after his prior job had officially ended. Our new jobs, his as a theoretical chemist at Duke, and mine as a resident at UNC, wouldn't start for another week.

Finally, he stopped seizing. I knew logically that people tend to overestimate the length of time a seizure takes, so I looked at the clock. Its glowing dial read 11:55 pm. He was now still and unresponsive. I looked at his eyes. His pupils dilated and constricted without any change in the ambient light.

Must be the catecholamines.

That's not helpful right now.

Two minutes after that he woke up, sort of. 11:57 pm.

"Neil, tell me your name!" Desperate and frightened, I looked straight into his eyes. He cocked his head like a curious puppy. I tried several times more insistently, until giving up. My husband of 8 years, who had a PhD in quantum physics, couldn't tell me his name or what year it was. "It's OK, it's going to be OK, just sleep now." I tucked him in bed like a child, and he went back to sleep.

I heaved my 6-months-pregnant frame out of bed and checked on our sleeping 14-month-old. His chest moved in a comfortable rhythm. His arm lay over the sock monkey his grandmother had made for him just a few months before she had died. His brown curls were soft underneath my fingertips.

I called the nurse help line at the Yale campus health number. That was where our care had been for several years. Ironically, he had seen his doctor just a month before for headaches. Go figure. The night nurse apologized. She could not give me any guidance. She could not even say whether I should call an ambulance. She was contractually obligated not to give advice to anyone who was not an actively insured patient. "But we were considered active patients there just a week ago! We haven't had the option to sign up for COBRA insurance yet. We just moved here. We haven't had time to establish care." But she was contractually obligated not to give advice to anyone who was not an actively insured patient. "Thank you very much for your time."

He was waking up. "Neil"—I held both his shoulders, speaking slowly and loudly—"tell me your name. What year is it?"

"Wha-what? What's wrong?"

"Tell—me—your name." I almost yelled at him.

"My name's Neil. What's wrong? Why are you crying?"

Of course, he had no idea he had just seized and that I had spent 20 minutes on a call line trying to find out what to do. 12:18 am. When he stood up, he almost fainted. I finally did a doctory thing and checked his pulse. It was in the low 30s. I called an ambulance.

I scooped up our groggy toddler and followed his ambulance. He says I tailgated, but I didn't know where the hospital was and those were the days before we had a GPS or smart phone. The night unfolded with a sleepless 14-month-old curly-headed boy entertaining himself by opening and closing the drawers of the bedside cart in the ED where I am now an attending physician. I remember which bed we were in. It was a curtained hallway space marked 35. I think about the night we were there every time I see that space. A CT was followed by an MRI and then a neurosurgery consult, and surgery within the next 48 hours.

"Aunt M——, can you drive in and watch A——? Neil needs brain surgery."

One day later, at 3:32 pm. We were in a room that was part storeroom. There were no other spaces to have the family meeting. There was another family in the actual family meeting room who was hearing their own bad news. "We couldn't get it all. There was a lot of swelling. We couldn't close up the dura." The neurosurgeon watched me cry in the way that people accustomed to breaking bad news do, with grace and distance. I went to tell Neil. His hair was shaved, his scalp yellow with betadine, and the 6-inch incision on his occiput had tight Prolene sutures. His prognosis didn't look good.

Weeks later, though, we found out that he is one in 100 million based on the best-known prevalence data. Despite all initial evidence of an invasive tumor type, it turned out to be an exceedingly rare benign tumor. I always knew he was special. They shot it with radiation and chemo a year later when it had started regrowing. But then it was silent for 8 years; the serial MRIs were always read as unchanged.

Now, nine years from the initial diagnosis, the news of recurrence has a new dimension: it has to be delivered to our kids. They are 4, 6, 8, and 10, old enough to understand. Daddy's brain tumor is getting bigger again.

"Is daddy going to die?" he asks again, looking up at us.

I want to reassure him and brush it off: Of course not. Daddy will be fine.

Instead, to my initial shock and horror, my husband sits down so he is at eye level and says: "We're all going to die." I glare at him. Let's talk about this later. And we did. Avoiding thoughts of death amount to living in a delusion. We should teach our kids young that they are mortal, and not let them live under the false assumption that they are not until their first experience with death. Living in light of our own mortality is a life more aligned with reality.

In the era of COVID-19, when the kids now hear us talking about hospital capacity, vents, and mortality rates, it does not come as a shock to them. They already know life is ephemeral. The 6-inch craniotomy scar on the back of their father's head is our family's momento mori, an ever-present symbol that reminds us we are mortal.

Yes, Daddy is going to die.

1 comment: