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center for writing | minnesota writing project

Sharon Cormany Ornelas

© 2005

Unkilling Me Softly

“Hat,” I croaked dryly.

I swam through the anesthesia like molasses, finally catching a glimpse of sunlight after 13 hours of submersion. In my last moments of lucidity early that morning, I was informed that my hat would not be allowed on the surgical table. The soft cotton knit cap was my favorite of several I’d picked up at the Cancer Center—grey with a white pattern that resembled the suits in a deck of cards, with a flat top and long sides that turned up to create a sort of skull cap. I’d started wearing the hat to bed a few months earlier to prevent having to pick handfuls of hair off my pillow each morning. Even after my hair loss slowed and I could go back to washing it without sitting in a tubful of floating strands, I continued to wear the hat to bed each night, as well as throughout my frequent hospitalizations. The hat had kept my head warm in the frigid hospital rooms and ensured that no one ever saw how pathetic my head looked with the few remaining locks covering it like a twin blanket on a king-sized bed. With the hat on and a few wispy bangs, I could pretend I still had a full head of hair. I could pretend that everything was normal.

“Hat.” My throat felt rusted shut.

The surface got closer as I strained to emerge from the sticky fluid of anesthesia. I rubbed my eyes and slowly pried them open. Indistinct figures hovered over the bed. I tried harder to push myself into lucidity.

“Pain.”

I slowly became aware of a sharp ache splitting across my middle. By now, in my ninth hospitalization in four months, I was used to being asked to rate my pain on a scale from one to ten. Four had become my standard answer since I had figured out that it was the cut-off to get more Percocet without causing serious alarm. But this was no level four pain.

“Pain,” I cried, and suddenly the figures around my bed began to move and take shape as everyone rushed to be the one to help. I think mainly they were just relieved to have something to do after what must have seemed like interminable waiting. Before the surgery, I had felt vaguely guilty about my mother, my sister, four aunts and uncles, my father and his wife, and a few other friends and supporters being held captive in the hospital for that long, waiting like expectant fathers for news of the surgery’s success. I worried that my mother and my father’s wife would feel uncomfortable together, that my sister would have no one to roll her eyes at when the rest of the family began to drive her crazy. At this point, however, I was incapable of empathy. All I cared about was ending the searing pain that filled the expanse where my organs had been that morning.

During my presurgical appointment a few days earlier, I had bombarded the surgeon with questions: 

“Is it possible to remove the spleen and fix the fistula without removing the stomach?”

“No. The tumor has fused everything together, so we’ll have to take out the spleen, part of the pancreas and colon, and part or all of the stomach.”

“Would two more rounds of chemo make a significant difference in the extent or difficulty of the surgery?”

“It might, because the tumor keeps getting smaller after every round. But it’s important to do the surgery while your white blood cell count is normal, and the chemo wipes it out every time. Your body is developing an immunity to most antibiotics, and your organs are badly damaged, so we need to act now.”

“What are the biggest risks of the surgery?”

“Blood loss, infection, leakage, especially from the pancreas, pneumonia. The chance for some sort of infection is about forty percent.”

“What are the chances for success?”

“Good. The risk of death is only about five or ten percent.”

“How long will the surgery take?”

“About twelve hours…maybe up to eighteen.”

“How long will I have to stay in the hospital?”

“About two weeks—maybe less if we don’t have to take the whole stomach.”

“What are the chances that you will take my whole stomach?”

“It depends on how high the tumor is. We can take part of the stomach if the tumor is attached to the bottom, but if it’s attached to the top of the stomach, we’ll have to take out the whole thing.”

I found his matter-of-fact answers calming, given the fact that only two months prior, the same man had called the tumor inoperable—it was wrapped around a major artery and removing it would have been fatal. But there was still one question weighing heavily on my mind that had yet to be answered: “How can you possibly perform life-threatening surgery for eighteen hours straight? Aren’t you going to get tired? Are you going to take a lunch break or something?” Dr. Hixton told me that another surgical oncologist would rotate in and work on my colon, while he dined on Diet Coke and peanut M & M’s. He referred to this other doctor as “the Butt Man.” I asked Dr. Hixton, whose specialty was mastectomies, “So, does that make you ‘the Boob Man’?” Later, I found out that while “the Butt Man” removed an 8-inch length of my colon and connected my esophagus directly to my small intestine, Dr. Hixton called down to tell my family that the tumor was out, but they had not, as hoped, been able to save my stomach.

“Pain.” I overheard the ICU nurses telling my mother that I had already reached the limit of painkillers I was allowed for the next several hours. My mother, distraught over my moaning, implored them to find something they could give me. She had still not fully recovered from my initial misdiagnosis of gastric adenocarcinoma back in May, which would have been terminal if inoperable. One doctor told my mother that, with luck and round-the-clock chemo, I might make it to the end of the summer. By the time my diagnosis was changed just three days later to gastric lymphoma, a more treatable cancer, my mother’s faith in life had been permanently shaken. She also never forgot Dr. Hixton’s initial reluctance to perform the surgery. In her worst-case scenario approach to analyzing problems, the worst possible outcome was not reassuring. Neither was my moaning. 

When Dr. Hixton was contacted about my pain medication, my mother was called to the phone. “Tell him to stop drinking Diet Coke and eating peanut M & M’s and give me something for this pain!” I groaned after her. 

I was dimly aware that everyone was relieved by my awakening, yet horrified by my appearance. I had tubes coming out of just about every orifice, plus a few randomly placed on limbs and appendages for good measure. My legs were wrapped in air compression hose, blue plastic inflatable devices that whirred on and off at startling intervals. A catheter bag was hooked to the side of my bed, so anyone could see exactly how much water I was producing. In a horizontal line across my abdomen, three drains protruded, each attached to a plastic bulb filling with a murky discharge. In the same line, between two of the drains, was a little orange rubber tube with a white spherical stopper in it—soon to be used as a feeding tube, when my intestines were ready to start taking over the work of my former stomach. 

Until then, I’d be back on a diet of TPN, the nutrient-packed intravenous fluid that had been both my savior and my captor during my chemo treatments earlier that summer. TPN had literally kept me alive when I was unable to eat enough to support my body’s needs, especially with a grapefruit-sized tumor siphoning off most of the little nutrition I could choke down. The problem was that it took 12 hours each night to run through the needle stuck in my chest—12 hours during which I had to be home, wheeling an IV pole around behind me, or sleeping fitfully while trying not to roll over the wrong way in my sleep. Even during my 12 hours of freedom each day, the needle jutted out of my port—a disc about the size of a quarter implanted semi-permanently just below the skin in my chest that allowed easy access to my veins. The access tube, looped and taped to my skin, peeked out from the neck of my shirts.

Throughout most of my hospitalizations, I had been able to use my port for just about anything requiring intravenous access: TPN, antibiotics, painkillers, chemo, blood draws, even transfusions. Its usefulness made the indignity of walking around with a needle sticking out of my chest for over a month a little easier to bear—at least I wasn’t getting stuck over and over in my rapidly disappearing arm veins. Before being knocked out that morning, I had charged my sister with the task of reminding the nurses to make sure they used my port for everything possible so I didn’t end up with a bunch of superfluous IV’s and junkie-like bruises. But, unfortunately, my sister couldn’t follow me inside the operating room, and apparently they like to put in a couple of extra IV’s just in case. So in addition to some IV’s in my port, I had the standard IV hookup in my forearm, plus an epidural in my back to deliver pain medication more directly to the nervous system, albeit with questionable effectiveness. Most shocking to the unprepared visitor, though, was the IV protruding in Frankensteinish fashion from the side of my neck. To top it off, I also had an oxygen tube taped into my nose and a nasal-gastric tube running out of one nostril, suctioning fluids from my small intestine into a jar next to the bed. And I was worried about what I looked like without my hat.

A few nights after my surgery, I dreamt I was lying on a table in the middle of what appeared to be a combination laboratory and dorm room, strapped down and hooked up to various machines. When my captors left the room, I knew time was of the essence; I had to flee as soon as possible. I hurriedly began freeing myself from the labyrinth of tubes and wires. I awoke having ripped the air hose and compression socks off my legs, and the oxygen tube out of my nose. I was working on the neck IV; thank god I hadn’t gotten to the catheter yet.

But the morphine dreams didn’t stop when I woke up. When my friends Stacey and Jim stopped by a few days after the surgery, I told them, “Now I understand why William S. Burroughs was so obsessed with giant bugs. I keep seeing them all over the place. I mean, I know this is a hospital and there aren’t really 8-inch cockroaches running all over, so it must be the morphine.” While Stacey and Jim laughed, a rainforest-sized insect scurried up the wall behind them. “There goes one now!” I exclaimed. Instinctively Stacey and Jim whipped around to look, but saw nothing more than a clean, white hospital wall.

“We should probably let you get some rest now,” they apologized, backing slowly out the door.

When the morphine wore off enough for the bugs to leave, the pain came screaming back. The amount of morphine needed to control the pain caused my vital signs to drop to the point of concern. The nurses tried to get me to sit up so my lungs could fully expand, preventing pneumonia. Between the morphine haze and my physical frailty, I could barely respond. My wound formed an upside-down V stretching all the way across my upper abdomen, cutting through most of my abdominal muscles. I never realized how much I took these muscles for granted until mine were rendered temporarily useless; almost every move requires some help from the abdominals. For days, I had to call for help to turn over onto my side. When the nurses did get me to sit up, I flopped over like a rag doll. One nurse said I had the muscle tone of someone who’d been bedridden for quite awhile. In fact, I had spent 40 days in the hospital over the past four months.

The nurses insisted that I blow into a breathing apparatus several times a day. The point was to levitate a little plastic ball inside a tube up to a certain line by exhaling as hard as I could. It reminded me of a toy I had as a child. The only difference was that the toy was filled with water; a push of the button sent the balls inside rocketing to the top of the chamber. This new breathing game looked easy enough, but when I tried it, it was like blowing out trick candles. I blew until I was cross-eyed. The ball barely wobbled before I slouched back, exhausted. I had the same feeling I’d had in nightmares, running furiously away from an axe-wielding maniac but getting nowhere. Maybe the thing was broken. But they still kept making me do it, over and over.

While the nurses feared I might get pneumonia, I feared the day when my bowels would recover from the anesthesia and start functioning again. How would I possibly be able to get to the bathroom in a hurry if I had to wait for someone to come pick me up, unhook me from half my medical contraptions and try to keep those that couldn’t be unhooked from getting tangled or caught, then lift me into a wheelchair, push both my chair and my IV pole across to the bathroom, and lift me onto the toilet without yanking out any needles? In my anxiety over this scenario, I inadvertently created a few test drills that turned out to be false alarms. When the big moment finally came, I was sound asleep. I awoke knowing that the time had come, but I didn’t have a prayer of doing anything about it. By the time the nurse arrived, the nature of my call for help had changed dramatically.

I felt a mixture of horror and relief that the nurse on duty that night was Steve. Tall and good-looking with a goatee and an earring, Steve and I had begun to develop what I imagined, in my morphine-addled state, to be a flirtation. Although I was about as attractive as road kill, trading sarcastic comments and clever remarks with Steve made me feel more like a human being and less like a case. Now suddenly I saw the disadvantage of our friendship. It would have been much less humiliating at this moment to have been just a case.

“This will be a lot easier if you quit squirming around,” Steve chided. I lay there, trying to think of a witty comeback, while Steve rolled me onto my side to clean me and change the bed linens out from under me. A few embarrassed apologies were the best I could come up with. Steve promised me that it was all okay. 

“It’s part of the job,” he reassured. That was exactly what I was afraid he’d say. 

The movement of my bowels was a bittersweet moment. It meant that my digestive system had begun to function again, so I no longer needed the nasal-gastric tube to suck every drop of secretions from my small intestine up out my nose. It also meant I could progress from TPN to tube feeding, and from ice chips to sips of clear liquids. After a week with no liquids, my throat felt like it was lined in burlap. I was dreaming about a flavor other than Chloraseptic. I savored each cool, sweet spoonful of lemon ice sliding down my raw throat.

A physical therapist showed up in my room soon after the surgery. At first I thought she had just stopped in to introduce herself, but she had bigger plans for me. She wanted me to sit up. By myself. I patiently explained to her that I had just had major abdominal surgery in which all or part of four organs, along with a ten-centimeter tumor, had been removed from my belly in a giant viscous ball. Had she not been told? Was she led to believe it was laproscopic surgery? Should I show her my incision?

This woman was adamant. She made it clear that she was not on a social visit, and she wasn’t leaving until I at least made a respectable effort to sit up. I made sure she saw just how many tubes and wires I had to contend with to comply with her demands. I painstakingly disentangled the IV’s coming out of my arm and port and shifted my drains, which were pinned to the inside of my gown, so they were all on my right side. I adjusted my hat and felt my neck IV to make sure it was securely taped in place. My face screwed up in pain as I slowly and deliberately shifted onto my right side. I flinched as I felt something tugging…my catheter bag was still attached to the opposite side of the bed. Pushing off with my head and clutching the bed rail like a crib, I painstakingly rolled myself up. It felt like 300 sit-ups condensed into 30 seconds. Upright for the first time in days, I felt a rush of pain, nausea, and dizziness. I wasn’t strong enough to straighten my spine or even hold myself upright. I gave myself a bump of morphine and slumped back down on my side. 

Before she left for the night, my mother reminded me of the sheer will that had kept me alive all through chemo; the will that had sent me to the beach or out dancing each time I was discharged from the hospital; the will that had made me so angry with her for even tiptoeing around the idea that I might not survive the surgery. She told me to find that will again—it was time to start fighting. As much as I wanted to lie there, resenting the taskmaster therapist for the pain I was feeling, I was grateful that night when I discovered I no longer had to call for help to turn over in bed. The movement broke the epidural line, forcing a change in my pain medication.

Freed from morphine’s grasp, I was able to sit up and dangle my feet over the side of the bed several times the next day. The day after that, I stood up. The room spun like a 50-cent carnival ride, but my reward for standing was that when I sat down again, it was in a chair. Oh, sweet blue vinyl reclining chair. Suddenly a whole new realm of possible activities was opened—I had somewhere to go! I embraced my new destination with gusto, making three separate trips to the chair that day.

Of course, sitting in a chair was not quite what the physical therapists had in mind for my goal. They wanted me to walk. Walking meant I no longer had to endure the constant inflation and deflation of the air compression hoses on my legs. I still had to wear the white knee socks, but now I advanced to layering on fuzzy grey hospital socks with treads on the bottom for traction.

The Advanced Care Unit, known in hospital parlance as “Four South,” had only about ten patient rooms, clustered around a central nurses’ station. Taking laps around this station became my new training regimen. To prevent me from losing my balance and tumbling over, I had to wear a large black belt around my waist, the other end of which was held by the therapist like a leash. Resembling an aged show dog, I hunched over my walker, shuffling forward at a glacial pace. The therapist walked behind me with my leash in one hand, pushing my IV pole with the other. The nurses’ were appropriately impressed with our little promenade. “Wow! Look at you!” they applauded. I kept waiting for someone to throw me a treat, although unless it was an ice chip, I wouldn’t have been able to eat it.

One day, at the time I was scheduled to be walked by the physical therapist, a woman with a guitar showed up in my room. At first, I was confused—I tried to imagine how this new piece of equipment might replace the leash. This confusion was compounded by the appearance of the regular physical therapist in the doorway, belt in hand. The guitar-wielding woman introduced herself as a music therapist, in search of patients who needed soothing. I guess someone told her that the residents of Four South were a captive audience, because she was a little disappointed when I told her I had a prior engagement. She offered to accompany us on our walk around the nurses’ station. It was the first time since my surgery that I had felt sorry for someone other than myself, so I agreed.

If before I had felt like a show dog, now I felt like a dancing bear. I led our little parade, followed by the physical therapist, loosely clutching my leash. The poor underutilized music therapist trailed a few steps behind like a troubadour, struggling to inspire my recovery by strumming a march at a dirgelike pace suited to my walking speed.

As our motley procession rounded the nurses’ station a second time, I felt a sudden conflict between my new tube feeding formula and my new digestive system. The tempo of the march became slightly more urgent as I futilely tried to quicken my pace. Both therapists looked slightly bewildered when we got back to my room and I slammed the bathroom door in their faces, barely getting the IV pole inside with me. I was close, but not close enough.

I hadn’t eaten solid food since the surgery, and the outcome was disastrous. It must have taken at least ten minutes for the nurse to arrive and help me peel off the soiled knee socks and pile them in the corner on top of my robe, then gingerly unpin each of my three drains and snap off my hospital gown. When the nurse came back with a fresh gown, I was astonished to see the music therapist still waiting in my room, picking at her guitar, killing me softly with her song. “What are you still doing here…waiting for a tip?” I wanted to scream, “Will you please find someone else to soothe?”

The combination of tube feeding and liquid diet was not agreeing with my new system. For most of the second week, I felt crappy. Literally. My diet was upgraded to full liquids—but the creamy soups and ice cream were even worse. I barely touched my meals; even a few bites or sips made me nauseous. I found out the answer to the question of whether or not I could throw up without a stomach: I could heave and convulse like a cat with a hairball, but nothing much came back up. At least that mystery was solved.

Ironically, my digestive problems helped me recover faster. Getting up seven or eight times a day to go to the bathroom built my strength. I started walking around the nurses’ station two or three times a day, adding more laps each time. My distinctive hunchback shuffle became a familiar sight to nurses and patients alike. After watching me hobble past her door innumerable times, one of my fellow wards asked the nurse to bring me a token of her well wishes. I had always wondered what she was doing with the giant tin of markers on her tray table as I peeked in on each lap, trying to be unobtrusive. Yet another mystery was solved when I received her gift—a velvet-flocked picture of kittens colored in brilliant fluorescent hues. It was a cross between a coloring book page and a velvet Elvis painting. I hung it in a place of honor on the wall, next to the whiteboard used by the hospital staff to communicate my status. Defacing this board was a favorite activity of visitors. Under the heading “Activity”, someone had written “Pilates” and “spinning.”

After several weeks, my room began to resemble a flea market. I was lucky to have quite a few visitors, and none of them came empty-handed. Since I couldn’t have food or real flowers, most of the gifts were more durable. The windowsill displayed two silk flower arrangements, several stuffed animals, and a menagerie of toys, including a device resembling a lava lamp filled with smiley faces that floated down when it was flipped over. It was like a very easy, very happy version of the breathing device the nurses made me use. The surfaces around my bed were piled with books, supermarket tabloids, magazines, smelly lotions, nail polish, and leftovers of various beverages my mother brought me each time she visited, which was twice a day. Accordingly, she had staked out the larger table in the room with her latest jigsaw puzzle in progress and a few Oprah magazines lifted from different lounges. Underneath that table were two grocery bags full of old magazines brought in one visit by a friend who seemed to be cleaning out her apartment. I envisioned renting a moving van for my discharge. 

As much as I loved the company, sometimes I felt overwhelmed by the visitors. Most days I would wake up to the rustle of my mother’s newspaper at 6:30 am, reassuring yet slightly irritating. The doctors came soon after on rounds, followed by orderlies with breakfast, nurses’ aides taking vitals, and nurses giving meds. Soon after I was whisked away by transport aides to get tests or physical therapy. By the time lunch was served, I was ready for a nap. Then the visitors started coming, my sister and mother like clockwork each day, others dropping in randomly throughout the afternoon and evening. Some nights all I wanted to do was watch “Paradise Hotel,” a dreadful reality show I’d gotten sucked into over the course of my summer of hospitalizations. Watching a bunch of tanned, beautiful gossips sip cocktails by the pool was about as far away from Four South as I could get. Who would stab each other in the back this week? What vitriolic comments would Zach hurl over his lobster dinner? I couldn’t tell anyone I watched it, but I didn’t want to miss it. 

The second weekend after the surgery, I longed to be insulted over fruity blender drinks, or at least to be interrupted while watching others do so, when my stream of visitors ran dry. Now approaching 50 total days in the hospital that summer, my novelty factor had worn off. Most of my friends had gone up north to a cabin together. I had insisted that they go, and that my sister join them, as I felt guilty for monopolizing so much of their summer with my medical dramas. But once they were gone, it was very, very quiet in my room. I was nauseous, feverish, and uncomfortable, but any serious danger seemed to have passed. For months, I’d been shelving any significant processing of emotions, holding up a positive front for myself and others while I focused all my energy on not dying. Now that there was no one there to hold up a front for, it collapsed in a teary heap around me. “I don’t know what’s wrong with me,” I sniffled to Darla, my favorite nurse. She suggested I consider antidepressants; I decided it was time to get out of there. But first, I had a few hurdles to pass.

A few weeks earlier, not long after the surgery, my head started to itch like crazy. I pawed at it like a dog with fleas. Was this another morphine hallucination? I noticed that my pillow was covered in wisps of hair each morning, and my hat started to fill with loose strands. When I started taking showers, the few pieces that had clung tenaciously to my head all summer, through four chemo treatments, filled the drain. Could it be a side effect of all the antibiotics?

One day, when scratching and clawing at my head brought no satisfaction, I took off my hat for more direct contact. As I rubbed my fingers maniacally over my skull, I realized something felt unusual, yet familiar. My head felt a little…fuzzy. Scratchy. Stubbly. I shuffled to the mirror for a better look. Instead of the pasty scalp that I had grown accustomed to over the summer, a dark shadow filled in the space between the few last strings. I counted backward to figure out how much time had passed since my last chemo treatment. Six weeks. Could my hair be growing back already?

By the end of the third week, my fever had broken. I was tolerating my tube feeding formula better, making only two bathroom trips a day. Having tired with incessant laps of Four South, I had begun venturing out into other wings of the Fourth floor, and even took a few trips outside to the courtyard with visitors. At one point I got so frustrated waiting for a transport aide who abandoned me outside the physical therapy gym that I decided to come back on my own. Thank god some kindly man rescued me from the elevator doors and returned me safely to my room, but I was tired of relying on others. One morning when I asked Dr. Hixton, as I did every morning, “Any idea when I’ll be getting out of here?” he finally answered, “Today.”

I left the velvet kittens for the next patient to enjoy, but we needed several carts to carry out everything else. Unlike the other times when I had left Four South, it occurred to me with a prick of sadness that this time I probably wouldn’t be back. I had practiced connecting and flushing my feeding tube, emptying my drains, and climbing enough stairs to get into my house, but I hadn’t practiced for the mixture of melancholy, elation, and terror that passed through me as I sat in the wheelchair, waiting to be pushed back into normal life. While my mother brought the car around, I took off my grey cotton hat and shoved it in the bag on my lap. I fished around for a minute until a found a blue and tan striped beach hat, which shielded my eyes from the late August sun. I stepped from the wheelchair onto the sidewalk, and got into the car.