Portland presents and cancer

natural VSCO fade +1 aka fog IRLIn case I haven’t made it abundantly obvious, I love San Francisco. I’ve parallel parked on a 30% grade hill (and only hit one school bus), I’ve been to every cafe within a five mile radius of my house, and I own an It’s It t-shirt (best 2016 purchase by far aside from the hundred actual it’s its). I can even do that finger thing to make my hand look like the Giants SF logo (but i live in chicago now so go cubs fly the w 108 years omg so crazy). I’m a west coast/best coast subscriber and I bleed 415, so when I visited Portland, Maine in late September with the tallest man on earth (my friend sam, not the other guy), I was fully prepared to keep my opinions to myself and put on a polite smile for a small coastal city that was trying its best. Red velvet cupcakes? That sounds delicious. Self-service froyo? What an idea.

Unfortunately, halfway into my fourth Holy Donut, I had to do some major rethinking. Because it turns out that Portland is pretty amazing: mom and pop cafes, bookshops you can walk to in light zip-up hoodies, lobsters that you literally disassemble and eat (what an idea!). They even have their own version of @karlthefog and lighthouses, which apparently are a thing in Portland. And while we didn’t hang out with Anna Kendrick (something that i was promised and am v bitter didn’t happen), I was able to wander around a local yarn store and get myself a healthy dose of fiber (wool. but also granola). img_7257it's called stylizing your photosThough I already have people that I need to be knitting for (tiffany, josh, alice, jessie ware, jessica chastain), this particular Portland purchase is for my good friends Lars and Judy, who housed/fed me during my time there and pretended not to notice when I ate their entire candy dish of peanut m&m’s. Twice.img_7302For him: a no-nonsense, charcoal grey ribbed watchman cap. The one on the right was my way of using up some leftover grey yarn that I had, but it was only enough for a child’s (tanner stage ii or iii) cap. Also note the photogenic backdrop of leaves that I’m sure multiple dogs/drunk humans have pissed in. Happy fall, people._dsc0026_3And for her: a slightly more-nonsense, infinity scarf that’s red enough to sink your teeth into. Inspired from a pattern that I saw at a local Portland goods/clothing store where a pair of sweatpants cost $200 (that kind of extravagance is unheard of sf). I would have had pictures of actual people wearing these things, but I’m a medical student on my pediatrics rotation, so half the people I see everyday are evaluating me (will knit for honors #fiberybribery) and the other half are too busy figuring out this whole head control business.

As a quick aside, I have a friend named Kirstie, and she talks like she’s on speed. Kirstie started her own small business a few years ago designing punny cards for all occasions (allmark cards?), and I used to make fun of her so much for it. I even sent her a list of ridiculous puns/portmanteaus as a joke. And then she took one, Illustrator-ed it onto a card, slapped on a few figs, and now they’re selling like crazy. So I guess the joke’s on me._dsc0075_2Anyway, go check out her shop for more grocery store appropriate gourdplay and support her, and by extension me, because it was my figgin’ idea.

After twenty minutes of writing and deleting and rewriting this sentence, I have come to the conclusion that there is no good segue from figs to cancer. Oh well. Fair warning, this one’s long, but hopefully you’ll find it worth while.

***The last time the Chicago Cubs won the world series, Albert Einstein was alive.

Oh yeah. Also, in case there’s any doubt: as irreverent as I am towards the personal space and privacy of others (i went through a phase in high school where i tried breaking into people’s lockers with shims cut from coke cans), there are some things, like HIPAA (and the episode of this american life that made me cry), that you just don’t mess with.

I first met Paul on a Thursday. It was morning and he was in the middle of eating breakfast, talking to his wife between bites of French toast. He gave a wet cough into a napkin and shook my hand when I approached. His grip was impressive. His hand felt warm. I had never met a dying man before (one of those things you don’t realize until after you’ve actually done it, it turns out) but he wasn’t who I was expecting. A part of me—the carnivorous part, I admit—thought he’d be more dramatic, more tragic. Not to sound unfeeling, but I was a little underwhelmed by him. He was just a man eating breakfast on a Thursday morning, unequivocally and unremarkably alive.

We talked for quite some time as I teased apart his story. It started when he was thirty, he told me, in his jaw, which he found odd. He didn’t even know that was a place it could happen. I mean, who’s ever heard of jaw cancer? He was prepped for surgery within a week of his diagnosis. The expediency both terrified and reassured him. The surgeon, a broad chested man in his late fifties, was a stranger, having only met Paul once, but he seemed kind and capable. He tried to spare as much native bone as possible, but—Paul paused and subconsciously brought a hand to his chin. I looked at him, trying not to stare, and noted his chipmunkish features: a small mouth between sunken cheeks, with just a touch of underbite. I searched for a scar but found none.

For the next ten years, he went on as if it had all been a bad dream. He got married, moved out to western Illinois, took up a job in customer service and had a couple of kids. And then one Sunday afternoon, he sat down on his couch to watch some television and vomited all over the living room carpet. Cancer was in his stomach. And like déjà vu he found himself shaking hands with a surgeon—this one seemed awfully young, though—much sooner than he would’ve thought possible. He hoped for another decade. Unfortunately, he only got eight months. That’s when the coughing started. Cancer was in his lungs. At this point, Paul was through with surgeons and tired of losing body parts, so he tried a variety of chemotherapy drugs, radiation, and clinical trials. But nothing worked. It was still there. It was still everywhere.

I thanked him for his time and asked if he had any questions for me.

“Nope, no questions.”

He rounded his o’s the way they do in the Midwest. Clean and precise. Not like how I was used to in California, where vowels tend to fall out of people’s mouths like bits of half chewed food. He said the exact same thing every time I asked, too. Nope, no questions. Just like that. We both looked over at his wife, who pulled out a well-worn spiral bound notebook from her purse.

“So the first question I have is about his cough. It’s been going on for weeks, now, and he hasn’t…”

Jane was on the larger side. Not overly so, but compared to him—it was hard not to notice. He took up barely half the bed and seemed to be swallowed by his sheets, while she had a full belly and a chin to spare. As I got to know them better, I realized they were one of those “opposites attract’ kind of couple. He was quiet and polite, agreeable to all the poking and prodding by the house staff everday. She was emotional and outspoken and quite obviously the decision-maker of the two, noticeably frustrated whenever his coughing fits didn’t cause as much alarm among the nurses as she believed they deserved. Often, when I was with them, they would slip into their own conversations, which would invariably escalate into arguments. They spoke heatedly, doing little to cover up the multitude of subtext. And between, their silences, eternal and excruciating. The tension between them was obvious, but it felt age old and perfected. I imagined it taking shape while they were dating, when his diagnosis was made, when their children were born. It seemed mature, over the years evolving to accommodate the body of his cancer, much like how a tree absorbs a bullet or a tomato grows between the links of a wire fence, distorted and awkward, but undoubtedly whole.

Paul had been admitted to the hospital because he was losing weight. Fast. Ten pounds in just the past month. His appetite was nonexistent, and what food he did try to eat very quickly came back up and inflamed his lungs. The problem was that no one wanted to touch him. His organs were so altered from years of treatment that his anatomy was practically unrecognizable. Almost alien. Too risky, they all said, passing him off to the next person. His chart was filled with notes like these, everyone denying him various procedures to treat his wasting away. I thought the word ‘risky’ was an interesting choice, since it was essentially meaningless. Compared to what, I wanted to ask them all. That word belongs to people who still have something left to lose. It no longer applied to him. Many words no longer did.

“I need to take him back home,” Jane told me sternly one day, “They’ve done nothing for him here, and he needs his medication.”

This was a Thursday again. A week from when he was admitted and longer than any of us had expected him to be here. Paul was enrolled in a clinical trial at the time—his fourth so far—taking an experimental drug called GW-45L, an orange pill the size of an aspirin designed to treat his particular brand of cancer. But while he was with us, he was prevented from going to any of his appointments, which threw off his dosing schedule. So each day he was in the hospital was another day without treatment. Another day that they had to call Jean, the trial coordinator, with effusive apologies and beg to be kept on the trial. By this point, he had already missed three doses.

I did my best to explain his situation, which was admittedly a hot mess, but we were making progress and things were finally happening. I told them what a J-tube was and about the surgeon who had agreed to implant one into his belly so he could feed himself without actually eating anything. I told them about the bags of nutrients he’d receive each day that would hang from his IV pole and drain directly into his intestines.

“Kind of like a second belly button,” Paul noted, not without a hint of disgust.

“When do you think this will happen,” Jane asked skeptically. She looked at me intently, ready to pounce at the slightest inconvenience.

“He’s on the schedule for tomorrow,” I said. “And then after that’s done, you can hopefully get back to your trial.”

Medical school taught me to speak vaguely, but there was a half-truth floating in there that stung. Jane threw her arms in the air triumphantly—she was that happy. Paul broke out into a smile. He would be married to bags of tube feeds for the rest of his life, but they didn’t care. They were going home.

Out of habit, I examined him before I left. His heart was loud and racing, which didn’t fit with how calm he looked, laying in bed. I pressed my stethoscope to his back and he reflexively took great gulps of air. He had complained of trouble breathing earlier, so a clear plastic mask was strapped over his mouth and nose, connected to a plastic reservoir of water behind him that bubbled out oxygen with a gentle gurgle. I squinted to hear breath sounds. My insides twisted and my heart steeped in guilt. I repositioned my stethoscope, and with my right hand resting on his shoulder, I felt the seven pounds he had lost since when we first met a week ago, bones thinly wrapped in sagging flesh. He was evaporating before my eyes. This man isn’t going anywhere, I thought to myself. This man is dying, I realized. His back gave slow and steady heaves. I closed my eyes to focus, but it made no difference. It was like listening to a cement wall.

Absolute silence.

Friday morning, he spiked a fever. Friday evening, he started having diarrhea.

His fever set off an entire chain of events involving blood cultures, antibiotics, and a meticulous account of his urine. Because of his diarrhea, nurses hung brightly colored signs over his door, large pictographs encouraging caution, suggesting the possible pathogens within. His surgeon was the first to speak up. I can’t do a procedure if he has an infection, she wrote in her note. Too risky, I added. And at the bottom: Thank you for letting me participate in the care of Mr. Evans. I clicked a button and ‘Mr. Evans’ lit up in a dim pink, indicating that it had been deliberately typed. Everything else had been copy and pasted.

On Saturday, the curtain walling off his bed from the door was drawn, and it reminded me of the Wizard of Oz, the shadow of his bald head amplified ominously on the neutral plaid. One foot in and I could tell the diarrhea was bad. It must have seeped into the furnishing somehow. The scent was thick and stale. I drew back the curtain and saw Jane wrapping a toy truck on the bedside table, careful not to knock over the assortment of get well soon cards. Paul was in bed tearing off pieces of scotch tape, hanging the extras off the guard rail. It was their grandson’s birthday, they explained. I talked to Paul about his symptoms. His fever had broken, but he was still having diarrhea. He tried eating lunch earlier but coughed most of it back up. I nodded sympathetically, which at this point felt automatic. We were trying. It was all we could do.

“Do you have any questions for me?”

“Nope, no questions.”

I turned to Jane, and for the first time, she didn’t have any questions either. The notebook that she usually kept sat idle in her purse beneath the sofa bed. She just looked at me, exhausted, and shook her head. In her hands, a piece of red tailgate stuck out between sheets of tissue paper, so she unwrapped it with a sigh and tried again.

I lingered in the room for a bit, questioning if I should keep talking, if I should tell them about all the things we were still trying to do, all the specialists we were asking to come in over the weekend—a concept not even hospitals are immune to—our efforts to put him back on the OR schedule for a J-tube, the number of times I had called Jean myself only to get her voicemail. It didn’t matter what, but I felt like I had to fill the space with something, anything.

They lingered too. They were waiting, but not necessarily waiting for me to leave. And for a moment—as if it’d caught the light just so—we could see it, the thin layer separating what we could and could not talk about. In that instant I wanted to tear it down, to claw at it with my bare hands. I wanted to take off my gloves and mask and everything that kept us apart and grab them by the shoulders. What are you even doing here, I wanted to scream at them. What do you think we’re doing for you. I wanted to say so much, to stomp on every last eggshell we’d been tip-toeing on. I wanted to fill the space with everything. But after a few more moments of silence, I thanked them and left.

When I stopped by their room later, they were quiet, a stuffy quiet that felt like the brooding aftermath of a particularly messy fight. I felt like I had interrupted them, but they weren’t doing anything. Maybe their thinking, their waiting.

“I think,” Jane started. I was surprised at how soft she spoke. “I think we want to go home.”

They had complained of going home for days, but this felt different. I looked at Paul, who kept his gaze on the blank television screen in front of him. He gave me a small nod. I put away the notes that I had instinctively taken out when I walked into their room. Hotdog folded sheets of printed out JAMA articles and day-old sign outs, covered in notes and numbers and black spirals testing the ink of my pen. Jean had finally called me back, and I’d written down what she’d said. It wasn’t good news, but it didn’t matter anymore.

The trash bin outside his room overflowed with disposable gowns that night. His doctors came, telling them what medications they were discharging him with, which ones were going to treat his infection and, more importantly, control his symptoms. His social worker and case manager dropped by to collect insurance information and signatures for discharge forms, setting him up with an oxygen tank at home—because he’d need that now. Later, an older woman with a clipboard showed up at his door, looking lost. Her glasses hung from a chain around her neck. She was the hospice nurse assigned to take care of him at home. Her name was Lara. A second year resident removed his central line and the nurses filed in soon after to take away the bags of IV fluids adorning his bed. At eight, food service came. Dinner was lasagna. A nursing extern on his first night shift took away Paul’s tray when he saw him asleep with the television on, and he had a hushed conversation with Jane in the dark about the ambulance ride back to Galena. Nine o’ clock, after breakfast, because it would take four hours, probably longer since they were doing construction on the I-90. They spoke purely logistics but Jane had tears in her eyes. The extern did too.

The next morning they went home.

I didn’t leave until late that night. Abandoned university lecture halls had already melted into black paper cutouts by the time I walked through campus. Street lamps towered from above, drowning the world in a dirty orange. It was summer, and heat hung thick in the air, humidity begging for a breeze. I loosened my tie and wiped the sweat from beneath my collar.

I couldn’t help but feel guilty. For part of it, for all of it. He had received his death sentence twenty-five years ago, but I swear I was the one with a foot to his throat, pressing his face against the gravel. It was me and it was us, all of us against him. And like a curtain call, we gathered to breath a sigh of relief as the elevator doors closed behind him for the last time. A sigh of accomplishment. Of what, I’m not entirely sure.

Off campus, street lamps worked sporadically, so I walked a few blocks in total darkness, guessing where the missing pieces of pavement were. Red brick walk-ups repeated on my left. A shuttle bus took its time passing me on my right. I turned west onto 52nd Street.

I considered everything that filled his room, up there on the tenth floor. All the things they had saved for after I had left, the fights over living and dying and if you truly loved me you would do this or that. The hard questions that we all avoid but had found a home in the backs of their minds, bits and pieces falling into place until words like funeral or widow or goodbye rolled smoothly off the tongue. Fluent in cancer. I imagined the entirety of their journey, every single thing that had brought them to that hospital room, spanning the four feet between their beds, the harsh silences between their words, joining them together each night. It was remarkable.

And then what about everything that was lost. Ten days, five kilograms, a jaw, a stomach. All the hopes we had eliminated, scrubbed away with chlorhexidine and alcohol wipes. We’re very good at that, I realized. Getting rid of things. We do it with a passion, like overzealous dishwashers, as if there’s some inherent value in the absences we create. But then we walk away without looking back, our fingers crossed that something better comes in to fill the void.

I took the back gate up to my apartment. I haven’t used the front door in ages. I climbed the winding wooden stairs to the second floor landing. A bead of light, set in the door like a drop of gold. Jon was home.

Paul stood at his front door the way I imagine most of us do after a long vacation, hesitating, momentarily forgetting that all of this was his. Jane walked in without pause, carrying bags of medicine and toiletries and dirty laundry, pages of printed out discharge summary haphazardly thrown in there somewhere. There was a lot to do. A lot to unpack. She got to work, moving quickly and muttering to herself, almost forgetting that Paul was still outside. He still had his hand in the doorway. From where he stood, he looked into the living room at the oriental rug they had gotten as a wedding gift. Intricate motifs of grey and green and blue atop a brilliant red. An abstract brown stain, faded but permanent.

He felt lonely, all of a sudden, just she and him. He had gotten used to the cycling of doctors and nurses and the eerie timelessness of hospital living. The sparse furnishings, the view of the city at night, the passable meals. He realized that he would likely never be there again, which saddened him, which angered him. How could he miss a place like that, he thought. What a thing to do to a dying man.

He coughed, which caused him to cough some more, which caused him to cough some more. It seemed to last forever, but the warm August air finally settled in his lungs. His eyes stung, and he heard Jane call his name. One more cautious breath—in and out—and he stepped inside, closing the door behind him.


2 thoughts on “Portland presents and cancer

  1. No words have I to express my feelings reading this story, except to humbly say I am so impressed by your humanity and thoughtful considerations of such situations. You are a remarkable person I think.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s