“If my baby’s meant to die, that’s what God would want.”
“I understand,” I told the young woman, the new mom, the little girl I’d known since the days the toys inside the treasure chest could make her smile. “But it’s not as simple as that.”
“I don’t want my baby sliced open. That’s about as simple as things get.”
“I understand,” I said again, my finger twisting circles within the phone cord’s spiral coil. It looked like a worm inside the plastic wires. All cozy inside its burrow. Frightened that it had ventured out of its hole, it seemed happy to be safely tucked back in.
“And who’s to say this will be the last one? More doctors. More surgeries. More phone calls like this one. For her entire life. With no end.”
“I understand,” I said again. My eyes fell to my prescription pad on the paper veneer that covered the exam table, my pen diagonal across its empty face. The sound of the clock on the walls tick-tick-ticking. Its circle sweeping like this phone cord that never ends. The bright lights. The open chart. The smell of iodine and idiocy and impotence. The guilt of my own violation against the role imbued by the white coat that felt stiff and wrong.
“You’re right,” I finally said, breaking the absurdity of my same words for three times on repeat. “This probably won’t be her last procedure, her last specialist, her last obstacle to overcome. She was born with a very serious heart condition. Without the surgery, she has little chance of surviving to her first birthday, let alone the next 30 days.”
“And if the surgery works… will she live a normal life after that?”
“Transposition is associated with other non-cardiac issues. Cognitive deficits. Speech delays. Hyperactivity issues. Maybe seizures.” I heard my own voice’s echo through the plastic receiver. Before it coiled its impulse through the wire, around my finger, across the telephone lines to the frightened girl on the other side who 10 days ago had become a mom. Sometimes it’s easier to hide behind the jargon. It keeps us separate, the ones who hurt and the ones who heal. “Her life may not be normal,” I tried, “but at least she’ll have one.”
“Well, there’s my answer. That’s no life worth living. And you can’t tell me I’m wrong.”
She was right. But I didn’t tell her. I had rotated through Children’s Hospital Oakland back in residency. I was trained in Family Practice but loved the E.R., and our rural community hospital up in wine country wasn’t big enough to draw the kids that were really sick. I feared for all I wouldn’t know after I graduated. And so I had built my own elective, drove the hour south to work the E.R. from 6 p.m. to 4 a.m. as many nights as I could.
I can still remember the faces of some of the parents, their masks of exhaustion like painted smiles on the faces of sad clowns. The cerebral palsy with developmental delay kids. The failing ventriculo-peritoneal shunt kids. The status asthmaticus kids. The ones in wheelchairs with twisted necks. Their strings of drool. Their empty eyes. Their parents bending down to wipe the spit, to kiss their cheeks, who loved them so much they wouldn’t imagine it any other way.
I couldn’t have done that.
I stared at my finger inside its wormhole. Heard the ticking. Smelled the rot of all that once allured me in the fetid world around.
There were no words left to say.
But there were.
Sometimes we are forced to play the role. Even when deep down it might not feel quite right.
“Unfortunately,” I started, feeling less like a doctor than a clown, “there are some laws called Baby Doe Rules that don’t really give you a choice…” I was referring to the rules that prevented doctors from withholding life-saving care. In essence, this new mom had no choice but to let the surgeons do exactly what she didn’t want. Within the day, her baby would be cut open.
That was twenty years ago. In the first Spring of my career. My beard is flecked with grey now. I would like to believe I’ve grown better, wiser. Sometimes I’m not so sure.
I first met Tiggy two years ago. She had a CEA that was slightly elevated. That’s a tumor marker, for those who don’t know. I’m not sure why I checked it. But the CT showed something suspicious. And the scope confirmed it, a cecal mass the size of a number 2 pencil’s eraser, the kind we doctors used fill out so many green bubbles on the Scantron sheets to earn the letters behind our names. I sent her to another surgeon for a second opinion. Tiggy wasn’t happy with what she’d said.
“Why would she want to take out half my colon for something the size of this nail?”
I narrowed my focus to examine her pinky finger, the one she now wagged in my face in the clinic’s bright, artificial lights. Nails polished and perfect. Fire-engine red like a Porsche’s skin. A zirconium or its better in its center. Flares of pink and white like starfire, but more sass. She was African-American. Somewhere in the neighborhood of her early 60’s. She had smooth skin and the kind of body that looked nice to hug. The kind with just enough cushion to wrap around you in a way that reminds you of your mom.
“That’s two surgeons now that both said the same thing,” I said.
“I’m going to try with diet. I found a clinic in California that uses a plant-based diet and lots of herbs.”
And then I told her what I thought. Not too much to steal her hope. But enough to let her know she mattered. That it would be a shame if it grew, if she needed chemo, if one day we looked back on today and wished we’d pulled the trigger. “With surgery,” I said, “you’d be cancer free. No time bomb ticking away inside.”
“I just can’t sign up to have half my colon removed just for one tiny spot,” Tiggy explained, her red fingernails poised on pointe atop the exam table’s paper like tiny ballerinas with way more sass.
I didn’t fight her. I’ve grown wiser with the whiskers. Half my pediatric kids aren’t vaccinated. Some folks prefer clay to Septra. “Cortisporin works better than garlic cloves,” I tell them. But what’s a country doc to do? You can lead a fish to water but you can’t make him drink. Or teach his horse to fish. Or however it goes. I can get it wrong, of course. We all can. But ultimately, I see the role of physician as more a teacher than an authoritarian. At least that’s the coat that seems to fit.
In this new world of polarities compounded, whose relative truths are cloaked in media feeds decided by algorithms, in which the greys and colors have been bled out and all that’s left is black or white, we doctors, we pillars, we elders must tread likely. It wasn’t always like this. But somehow the yins and yangs that once meant balance have spun their mirrored teardrops too fast and spun their centers out. In this universe of two extremes, perhaps it’s more important to nurture the relationship, keep the ties that bind, than push those away who don’t agree, who hold their own truths. No matter how true our truths might be.
Tiggy came back last week. After two years of CEA’s that slowly trended. After a handful of CT’s that never quite shrunk. After all that juicing. All those vitamins. After so much hope and denial and praying, she came back.
Tiggy was in pain. She couldn’t eat. She’d spent the whole night wretching. In just a week, she’d lost six pounds.
You all know how this ends.
I looked at her nails as I pressed into her belly, the mass of her that I had after every visit for two years loved to hug. I heard the crackling of the exam table’s paper as it crinkled. They were pink, her perfect nails. Like clouds of cotton candy all fluffy on their cardboard stick. A mass the size of a cantaloupe, the sweeping hand of time against the wall.
“Tiggy,” I said. “You have to go the hospital. You’re going to need to get surgery. This cancer is blocking your whole intestines up.”
I read the discharge summary a few days later. They’d taken her to surgery. Grafted some bypass tract form the large bowel to small to relieve the obstruction. But the cancer was too big to cut out.
And there, the cutting edge that bleeds through each day. The hundred decisions we make. The lives we touch. The ones we save. The ones we lose. And all the words that spill between. How hard do we lean? With how much weight do we push?
There are no Baby Doe laws for grown ups. If there were, Tiggy would still be here. There would have been a mandate. For her to take out the cancer while it still would have fit on the tip of her finger. I could hug her again. Her kids wouldn’t have had to say goodbye.
I’m so tired of the controversy. I’m so tired of the requests for exemptions. I’m so tired of explaining that ivermectin is for scabies, or maybe bird mites, and if it works, the science will prove it true. I’m so tired of talking about vaccines and all their ills, how they’re untested, how the numbers are all lies.
But I can’t push too hard. I can only speak my truth. I couldn’t push Tiggy any harder. Over the years, through the CEA’s that inched upward and the mass that grew and grew, I pushed only as hard as a man can push. The only life that’s mine fits in this suit of skin that follows me like a shadow. But your life? Theirs? There is only so much one man can do.
And that’s why I’m OK with how things turned out. I have to be. And maybe that’s my message to you, too: Push as much as you can until they hear and know your truth. Toss your truths like lifelines off the bow into the storm and thrashing sea. Convince them of how much you care. Allow them to see how sad you’ll be if they don’t grab on, if they let themselves drift away.
It’s not an easy fit, sometimes, these coats, this role, this life. Too starchy. Too hurried. Too white. But I’m pretty sure they still stand for something proud, something noble. And, besides, they’re the only coats we got.
This story was first published by the author on www.doximity.com in September of 2021