I.
Lying in a sterile hospital bed, complete with wheels on the bottom and metal bars on the sides, I could no longer disregard the pressing demands of my relentlessly contracting and expanding bowels. The term “evacuation” once conjured images of large masses fleeing fires or hurricanes or nuclear disasters, blocking exits and major roadways. No longer. Now, images of the most messy and unavoidable consequences of human life have come to replace them. Images of excretion, humiliation and death.
The doctors explained pancreatitis to me as a condition in which the pancreas decides to eat
itself with its own enzymes and becomes inflamed as a result. They told me that it occurred
mostly in overweight middle-aged alcoholic women and that I was lucky that I was neither
overweight nor middle-aged nor an alcoholic. After my first attack of acute pancreatitis, x-rays
revealed a mass growing in the middle of my pancreas which the doctors presumed to be a
cyst. The cyst was blocking my digestive enzymes from entering my intestines and causing
them to collect in my blood, rendering them useless in performing their normal digestive
functions. As a result, to my great dismay, I was no longer allowed to eat ice cream or peanut
butter or anything too fatty for my pitifully deficient digestive enzymes to process. Doing so
would easily trigger another attack, and after three separate attacks, I was warned that another one could wipe out my pancreas, cause organ failure and kill me. Thus, after over two years of these attacks and the cardboard diet they imposed, the doctors finally agreed that the cyst should be removed surgically, despite the risks of the decidedly complicated operation.
Writhing in this whitewashed bed awaiting this surgery, I was intensely aware of the pathetic
nature of my new existence, marked by a constant preoccupation with what were previously
“normal” life functions. They took place in a bathroom, a kitchen, a living room, a bedroom.
Now, they all took place in a single transportable bed courtesy of bedpans, nurses and
intravenous feeding mechanisms.
In this particular instance, however, my visceral needs had overcome silence, my choice
response to humiliation. I had already proclaimed that a bedpan would not be necessary and to my disgrace, my proclamation had been taken seriously and observed. Having consumed three bottles of cherry-flavored magnesium hydroxide the night before in order to achieve the
thoroughly barren gastrointestinal tract the surgeons insisted was essential for my “intimate”
surgery, I had been “evacuating” all night, and the intestinal acrobatics continued into the
morning. I was bracing myself for a final emergency landing, but I couldn’t get out of that
godforsaken bed.
I sat up, pulling harder and harder on the metal bars, which the nurse had so easily pulled up
and clicked into place after transporting me here just a short while before. My palms grew
sweaty, and my heart began to race. My dreaded fate was rapidly approaching, and panic was
the only rational resort. The four other patients in the room were so serene they looked
catatonic by comparison.
I took my first real look around in desperation. What kind of room was this? Did it have some
official name? For some reason, I felt that if I found out, if there were some sign above it
reading “Pre-op Prep Room” or “Gastro-Intestinal Care Unit,” I would somehow feel better.
Maybe then I could get out of this goddamn bed; maybe then I could take a shit without asking
for help; maybe then I could swallow my pride and ask for a stinking bedpan. Maybe then one
of these white coats would hold still long enough to notice me.
Was I in hell? No one seemed to notice how badly I wanted, needed out of this bed. Even if
my IV weren’t caught under the bars making it impossible to climb over, I was still far too weak
from the evening’s adventures to climb out. Defeated, I called for help: “Um, hello.” Nothing.
Everyone was flying around this room. It seemed all they were capable of doing was pulling out charts from the bottoms of beds, running with them and replacing them. I had decided to catch the attention of the next person to pull out or replace mine. A tall, skinny resident with gold wire framed glasses, curly raven hair and transparent skin. “Um, hi. I really need—”
“The anesthesiologist should be here any minute,” she told the chart.
When people think you might die and they don’t know you in the first place and they don’t
absolutely need to look at you, they do their best to look elsewhere. And if they have to look
at you, they generally focus on the part of you that is presumably the most damaged.
In my case—that is, a 20-year-old, 5’6,” 120-pound, non-smoking, non-drinking, otherwise
healthy female with a badly situated pancreatic mass case—the majority of my beloved
healthcare providers choose to look at my pancreas, directly below the ribs, some three inches
above the belly button, when addressing me. I used to move my head down to my stomach to
catch their eyes, but now I just talk to their pancreas too, as though it were a conversation
between organs and not individual human beings. They don’t seem to notice.
The hopeless resident replaced my chart and ran away before I could try again. I resumed
pulling at the bars until I was finally shaking the bed itself. I was pulling so hard in alternating
directions that the bed had started rolling back and forth on the gleaming white linoleum floor
when a nurse passing by managed to notice me. She looked around and asked me what I
wanted. My angel in lilac hospital scrubs. I wanted to hug her, but there was no time. “I have
to go to the bathroom, and I can’t get this thing down,” I conceded. “Can you help me?” She
had pulled the bars down before I had even asked. I thanked her and hobbled toward the
bathroom, dragging my IV behind.
This was the first time in my life sitting on a public toilet without having my skin and the seat
separated by at least three layers of toilet paper. I threw down one measly layer and collapsed,
not even noticing until it was too late that I had missed the seat entirely and the toilet paper
was on the floor. I figured the breach in hygiene was acceptable though, as I was facing much
more serious risks upon returning to my caged bed. I used my IV to anchor myself up and
make my way back to the cage, where a handsome young man was waiting for me. He was
tall and his white coat contrasted beautifully with his dark skin.
I imagined for a moment that he was my devoted lover and had come to steal me away from
the sterility. We would go to some small Mediterranean coastal town and he would take care of
me, and we would both accept and wait for my death. He would paint and sing to me. He
would copy down my every word. My each expression or movement or utterance would drip
with remarkable insight, and he would listen and find me terribly brilliant and radiant. I would
die in his arms, and within a year he would publish my memoir, complete with photographs and
direct quotations. I would become outrageously famous in death thanks to him.
“Hi, I’m Dr. Slorion,* and I’m going to put you to sleep for your surgery. Have they explained
the surgery to you?”
The fantasy was shattered. I realized that his nose was inordinately large and that he was in
fact a bit overweight and not at all attractive.
“Yes, several times,” I responded.
When my condition was initially explained to me, the doctor couldn’t stop himself from grinning like a child discovering his first long-awaited bicycle under the tree on Christmas morning. “One in a million,” he kept repeating, referring to the odds of this happening to me. In effect, he and others in his position made it quite clear that my case was special, and accordingly, I felt anything but. Still, I seemed to intrigue every doctor who met my recalcitrant pancreas. That is, except for my immediate family: my mother the pathologist, my father the
obstetrician/gynecologist, and my sister the internist. Understandably, they were a little less
excited, and refrained from oohing and aahing at the baffling statistics.
“So if you could just start counting backwards from one-hundred now. Carrie is injecting the
Verset,” Dr. Slorion directed.
“One-hundred, ninety-nine, ninety-eight, ninety-seven, ninety-six, ninety—,” I stopped
counting. What if I fell asleep for good? Did I really want my last words to be “eighty-two” or
“seventy-seven”?
“Melody?”
“Oh, I’m awake. I just don’t like counting much. If you want, I’ll just talk to you, and you’ll
know when I’m out when I stop, or what—”
“Let’s just count, Melody. OK?”
“Fine. Where was I?”
“Oh, it doesn’t matter. Just count.”
“If it doesn’t matter, I can talk. If it doesn’t matter, you can bear to . . .”
Those were the last words I remember speaking before passing out.
II.
When I began regaining consciousness, my sister was standing above me. She was rubbing
endless gobs of Vaseline on my lips, and the taste and consistency of the petroleum jelly was
beginning to thoroughly nauseate me. But, I simply couldn’t tell her to stop. No matter how
hard I tried, the words only came out in my mind. Still, I don’t think I would have told her to
stop even if I could get the words out. My lips must have looked grossly chapped for anyone
to have even considered putting that much Vaseline on them. I knew something more than my
lips had to be wrong, but I couldn’t maintain consciousness long enough to find out.
In the two days it took me to recognize my sister standing above my bed with her gigantic vat
of Vaseline, my family was informed that I would not die now, but in all likelihood, within the
year. During surgery, the doctors discovered that I sheltered an even more extraordinary and
exceptional growth than they had predicted: a malignant pancreatic tumor, about the size of a
small plum with radiating cancerous growths orbiting it like little moons.
I imagine the surgeon got a little excited. Maybe his heart danced with secret delight at my
newly discovered metastasis. Or, maybe he felt bad. Maybe his heart didn’t dance; maybe it
sank at the prospect of having mistaken my mass for a cyst in the first place, or at the prospect
of telling my parents, or at the prospect of a life cut short. But, even so, I still suspect that
part of him had to have been just a little bit excited, and I know that when he had to reveal the
final mistake, he must have been just a little bit let down.
On the day of my surgery, my family was joined by about ten of our closest friends,
mostly doctors as well. For over eight hours, they all sat in a large waiting room, as I
underwent a partial mid-pancreatectomy with a repositioning of the remnants of the pancreatic duct into the small intestine, which by itself, before any mention of cancer, had a good tenpercent chance of killing me. Finally, Dr. Prence came in and informed everyone that the surgery had gone well; but that my cyst had turned out to be a tumor and that my tumor was, according to the pathologist, “highly suspicious for malignancy.” After further examination, the pathologist reported to my family that my tumor was indeed malignant.
While my mother refused to accept the diagnosis and used her every last bit of medical
knowledge to disprove the report, my father seemed to forget that he ever went to medical
school. He seemed to forget that his daughter and not he had just received the death
sentence. This was completely in character for him. I had tried my best to hide my pain from
him during the last few years because he couldn’t help but mimic me. When I stopped eating,
he stopped eating; when I lost weight, he lost weight; when I was put on antidepressants, he
was put on a higher dose. And so, understandably, when my cancerous growth was first
discovered, his was already in its final stages. He told me later that he walked for hours after
the doctors told him. While my mom stayed and fought with them, studying slides and
statistics, ignoring the doctors, who kept telling her that her emotions were tainting her medical evaluations, he bought a pack of cigarettes and, in a daze, took a late-night stroll through the less than glamorous streets of the south side of Chicago which ran alongside the hospital. Thus, as I lay unconscious, my family began to cope with the prospect of my impending death: my mother with her slides, my sister with her Vaseline and my father with his Marlboro Lights. I, however, was not nearly so distraught. My distress would come later, when the narcotics had worn off and my mother had won her case. I was not present when my family was informed about my terminal cancer, nor was I told personally until it was no longer a reality. Thus, reality was playing tricks on me, and I was becoming highly skeptical. It was at this point in time, when my veins were being routinely injected with narcotics, when my mind was still unable to fully distinguish dream from reality, and when my family had not yet chosen to share my terminal status with me, that the faithful medical staff working on my case had some elementary revisions to make on my original diagnosis.
The phone rang, and my mother answered. Within five seconds, the room was singing: “It’s
benign, it’s benign . . .” This, I thought, was real. Do phones ever ring that loudly in dreams?
Apparently, some dye on a slide had not picked up where it should have, and I’d been
accordingly diagnosed with terminal cancer for 72 hours. “A fluke, so sorry, never happens, one
in a million,” the pathologist explained to my mother. “It isn’t cancer after all. A mistake: it’s
benign.”
But, how could I be sure there wasn’t some other mistake that I wouldn’t discover in a week or
a month or even a year? How could I be sure there wasn’t something else they weren’t telling
me? How could I know for certain that I wasn’t still in surgery dreaming this?
III.
All too soon, I found out, as my experiences recovering made me almost wish I’d had cancer
after all, just so everyone would leave me alone. There’s a certain amount of relief that comes
with being a lost cause. It’s not so important to get someone to do the routine blood
pressure/blood sugar/temperature/heart rate/breathing tests so often, and it’s not the end of
the world if you don’t go for walks. Everyone forced me to move and try to function once they
found out I wasn’t dying, and all I wanted to do was sleep so I couldn’t feel the pain. My sister
would drag me through the halls daily, making sure I didn’t trip over any of my numerous
tubes.
You can die with grace in a hospital, but as long as there’s a chance you’ll make it, elegance is
out of the question. Friday mornings were my constant reminders of this. That was when Dr.
Prence and anywhere from eight to fifteen residents, nurses and med students would drop by
and visit for “grand rounds.” Dr. Prence was a world-renowned surgeon, and as a result, his
entourage looked scared as hell of him. In fact, they were always so busy being scared of him
and answering his questions that not a single one ever addressed me.
My first visit of this kind took place less than a week after surgery when I was still a weak and
wasted collection of tubes--one in my nose to stop me from gagging, one in my urethra to stop
me from wetting the bed, and two coming out of small holes they’d cut in my sides directly
above my hips to stop blood and fluid from accumulating in my abdomen. I wore only a loose
green hospital gown; the tubes and my swollen belly made it impossible to wear anything else.
“Good morning, Melody. How are you feeling?” Dr. Prence asked my belly.
“Um, ok. When do you think I can eat?”
“I’ll have the nurse bring you some ice chips,” he answered, and started explaining my case to
his companions. They proceeded to shake their heads and focus in on my stomach. One of
them then pulled the sheet off of me at Dr. Prence’s request and I almost fell off the bed in an
attempt to get it back. My short gown had ridden up, exposing my entirely naked lower half. I
would have said something, but I was too anesthetized to protest.
The spectators had turned their attention to the large throbbing scar directly below my ribs.
“Wow! You did a great job with the patient’s stitches here,” one of the students noted, poking
me. I felt like a rare parasite under a microscope, my observer calling everyone over to see
me, the others getting all excited over the extraordinary specimen and wishing they had been
the ones to first discover me. Friday afternoons were always filled with the relief of knowing it
would be one whole week until the next major humiliation.
Still, disgrace came in many guises, and shortly before I was released, it came in the form of a
Tuesday night visit from a first-year resident, Eric Taylor. He came into my room and at once
recognized my sister and her husband as old classmates from Duke. Apparently, he and my
sister were both Art History majors. She remembered him after about five minutes of his
gratuitous efforts to refresh her memory, and following some more empty banter, he finally
looked at me and proclaimed his intent: “I came to take out Melody’s drainage tubes.” Everyone else was glad this was finally being done, but I had grown somewhat attached to the twin tubes coming out of my sides, and was a little worried about what would happen to the small holes constructed solely for their inhabitance. They were too big and deep to just heal, and they looked like they might bleed once the tubes emerging from them were removed. Before the boy attended to them, however, he made it a point to closely examine my scar and then talk about it with my sister and brother-in-law as though it were a rare painting or sculpture on display in a gallery. “Great work, really, great work,” he affirmed.
“Let’s see if we can’t set you free of these drainage tubes, shall we?” he asked, as if I had any
say in the matter.
“Do I get any pain meds?” I inquired.
“Oh, no, this shouldn’t hurt at all,” he told me, and my sister and brother-in-law agreed. “You
see, you have no nerve endings to sense pain inside the intestines, and it shouldn’t pull the skin
too much. It should be just a little bit uncomfortable, OK?”
“Whatever you say,” I conceded.
Three years later, I still remember that he began with my right side. He tried to pull the tube
out quickly and entirely. He failed. I was screaming.
“Oh, I’m sorry. I wasn’t at the surgery. I really didn’t know the tube was so long,” he
frantically tried to explain himself.
Not only were the tubes longer than he’d expected, but the part of the tube inside my body was twice the width of the part of the tube visible outside my body. As a result, the pulling of the tube caused a considerable amount of stretching in my skin. Furthermore, although Eric insisted that I had no nerve endings inside my stomach and would not feel anything other than slight discomfort, I can be quite certain he never experienced this procedure himself. It felt something like I would imagine a live power wire would feel whipping through my entrails. But it was difficult to decipher which was worse—the pain of this serpent flailing about my viscera or the agony of the stretching skin of the open wound at my waist.
“What the hell are you doing? Are you trying to kill me? Do you have any idea what this feels
like?” I cried. He was out the door and reappeared within seconds with a nurse and some
morphine. He injected the morphine and pulled the rest of the tube out as I bawled and
screamed, and by the time he got to the second one, I had passed out. This was my first time
actually screaming in the hospital, and I fully believe that my wails were warranted, although I
admit I felt a little embarrassed when I saw the boy at the next grand rounds. Dr. Prence’s
entire entourage seemed to be fighting back laughter; he’d probably told them all that I was
some sort of pathetic drama queen. He winked at me, the fucking prick.
Four days later, I was discharged. Initially, they insisted they wouldn’t release me until I had a
bowel movement, but as the Demerol I was taking to control my pain had left me unduly
constipated, they settled for a fart and sent me home. I had lost a good deal of weight but
couldn’t leave the hospital in my own clothes because my stomach was still very swollen. That,
they told me, would take a year or two to return completely back to normal. I looked like a
starving child. All skinny arms and legs, with a big bulbous belly, but I was allowed to eat now,
and they told me I was completely healed. No excessive scaring, no bleeding, no diabetes, no
leaks, no tumors, no cancer, they said. They were very proud of the cancer part, which
surprised me, as I had never really had cancer in the first place.
My tumor still consumes the time and toil of more than a few highly regarded physicians and
researchers. They continue working on compiling my full history (Perhaps, waiting for me to
relapse?), comparing it to other cases, and plan on eventually publishing what they hope will be an award-winning article in one of the country’s several preeminent medical journals. My health alone wins them no awards. My recovery relied heavily on my perpetual degradation, but to all the doctors who documented it, it still qualifies as a categorical success.
I give them that. I’ll admit I’m still breathing. I’ll admit I’m now leading a “normal” life. I’ll
even admit I am happy about this. Still, sometimes I experience a sharp pain at my scar, and I
am reminded. I am no longer an unidentifiable specimen writhing in a petri dish. I need not be
examined. I’ve taken up enough of the medical community’s precious time in exchange for life,
and they’ve taken enough of my precious dignity in exchange for progress.
* This name and all other names of medical professionals in this essay have been changed in
order to preserve the confidentiality of the staff at Rush-Presbyterian-St. Luke’s Medical Center.