Case: Do Not Discard
posted at: http://www.cancerguide.org/nparra_story.html
NonFiction - #21 - Rage and Reconciliation:Inspiring a Health Care
five and a half years ago with a barely noticed
mass on a routine chest x-ray. I'm in Target buying paper towels and
hooks when the nurse pages me. I leave my shopping cart near the check
stand and go outside to call her from a payphone.
"There's a mass
on your left lung," she says. " Can you come in for
a CT-scan this afternoon? Anytime before 5:30?" "Yes, yes," I tell her,
"of course." I don't really know what a mass on the lung means, exactly
how a CT-scan works or what it will show.
The first of my
many CT-scans takes place in a windowless room of
the hospital basement. I lie on the table while a doctor injects dye
the bulging vein in the crook of my arm. Above my head to the left the
word Siemens is inscribed in black on a silver metal plate attached to
the machine. I think of Judy Chicago's "Holocaust Project," and I see
gaunt shaved head slave laborers shuffle into the Siemens factory. The
thought occurs to me to jump up, to demand a different machine, a
of Siemens, but although at the time I don't realize it I'm entering a
parallel world now, one in which I will learn to be quiet. I will learn
to comply, to submit. I will learn to live outside the tumultuous world
as if watching a windstorm from the inside of a car. I haven't yet
the border into this new world, but I am definitely in the border
radiologist comes out from behind an enclosure. His
eyes are puffy and brown, his hair gunmetal gray. He speaks to me
his eyes trained on his shoe.
"What are you
here for?" he asks.
"I'm not sure,"
say, swinging my legs off the table. "Something
about something on my lung."
He nods. As I
leave he wishes me good luck. I smile and shrug. I
am thirty- eight years old. I still feel the invincibility of my youth.
I'm not yet too worried about this "mass" which I figure will be
up with some kind of pill.
The next time
nurse calls me I am at home after work, exhausted
after teaching five periods of high school English. I am sitting and
at last night's dirty dinner dishes and wondering why neither my son
daughter has managed too wash them after school. "Natalie," She says,
definitely a mass there. It looks pretty small, about 2x2 cm."
say. When she doesn't answer quickly enough I ask,
"Isn't it?" I want to know what it could be, the range of possibility.
"Is it cancer?"
"It could be,"
her voice is cautious, "but it could be something
else, some kind of infection. There are some enlarged lymph nodes in
area" My ignorance of cancer is so thorough that I think enlarged lymph
nodes in the area are a good thing. Don't you get enlarged lymph nodes
when you have a sore throat? A cold? In my new world, a whole other
of knowledge with its own vocabulary is necessary. The nurse makes me
appointment with the thoracic surgeon for Thursday.
waiting room, my mother sits under the window, her
black bag clutched to her chest, ankles crossed. She will be my
shadow now, she tells me. Whenever I go to an appointment, she will go
too. Despite her maternal posturing, she seems diminished, shrunken
that sea green wall.
resident, a tall young Russian wearing green scrubs and
black felt clogs introduces himself. He asks a lot of questions, jots
my answers. Then the door pushes open and silence descends on the room
as the surgeon enters; watery eyes, thin gray hair hangs over the
of his surgeon's coat. His gray beard could use a trim. Gold-rimmed
push down on his nose. He flips his calendar open to December. "How
the 12th be?" he asks.
"Wait, wait," I
hold up my hand. "Aren't we here to talk about options?
Tests? Biopsies? Or something? The nurse told me that you can take a
sample with a bronchoscope. How about that?" Dr. Glatleider shakes his
head, "Bronchoscopies are for people I don't want to operate on. You
a small mass; we'll remove it. Simple."
Doctor," my diffident polite mother speaks. "If this
were your daughter would you recommend going outside of Kaiser if we
get the operation done a month earlier? Would that give her a better
She twists the straps of her bag. For the first time my mother looks
a very old woman.
presses his lips together, shakes his head: "What are
you saying?" His gaze falls on my mother who shrinks deeper into her
"Are you suggesting that I would risk your daughter's life? If that's
you think, maybe you should try another surgeon. Here. I'll give you a
referral." He reaches for his pocket. I jump off the table sliding my
into backless shoes.
Go ahead; write it," I say. The resident jerks his
head up. Glatleider and I lock eyes for a moment. I glance at my mother
who is squeezing a wad of tissue in one hand.
"No, no, no,"
mother says, " Please, Natalie. Doctor, we want
you to do the operation. We've heard you were a good surgeon." I glare
at my mother then start to speak, but I can't, my mouth is filled with
satisfied smile crosses Glatleider's face. My mother wipes
her nose. "Good, Okay then," he says. "Would it make you feel better if
we move it up a week? Say, to December fifth?" He turns and leaves the
explains the surgery to me. Three weeks from now they
will perform a thoracotomy, where they open the thorax by cutting
the rib cage. Pneumonectomy is removal of the lung, but what will
once my chest is opened will depend on what the surgeon sees inside.
the residents says, "I'll get you set up for your pre-op blood work." I
can hear my ribs crack, dry twigs breaking.
supposed to last four or five hours, so when my
family - husband, mother, two oldest kids, sister, ex-husband - sees
step out of the elevator with a tie hanging down the inside of a clean
white coat, his hair wet and combed, they think I'm dead. It has only
two hours, maybe a little less. They think that with surgery, you
survive it or not. Glatleider motions for them to sit in an alcove in
corner of the waiting room. They leave their take-out Chinese food
on top of outdated copies of worn magazines, chow mein noodles dripping
down the sides of white cardboard cartons.
"It is cancer,"
Glatleider tells them, "and it's spread all over
her chest. I couldn't take out the lung. I immediately closed her back
up. I'll refer her to an oncologist, maybe there's some chemotherapy
her, but I doubt it. We just couldn't get it. It's much worse than we
He tells them he is going home; he'll be back to talk to me in the
but in the meantime he suggests that my family doesn't discuss the
My oldest son
Jonathon remembers watching the elevator come and go,
filled with medical staff, walk-in patients headed for their cars,
arms loaded with balloon bouquets, flowers, stuffed animals. "It wasn't
even a private thing," he said.
Later my mother
remembers, "Dr. Glatleider said 'I'm very sorry.'"
"He did?" I
"It doesn't sound like him."
She tilts her
head, wondering. "Well, yes, wouldn't he say something
like that after he tells you your daughter is going to die?"
I wake up in
recovery room, my bed the last in a row of seven
or eight. I look down the row and feel some relief that the stiff white
sheets are pulled only to the patients' chins so I know I'm not in the
morgue At first the lights are too bright for me to open my eyes. My
feels is a dry leaf, parched and I beg for water. A young nurse with
dark hair pulled back into a ponytail and clear skin feeds me ice chips
against Glatleider's orders. We talk about our kids. She has two. She
that without her union Glatleider would have had her fired. "He's an
she says, and I smile. "I know," I say, "I hate him."
My head is
and thick with morphine and my lips feel as if they've
been pulled around a rubber ball. My eyes strain to focus and finally
on the surgeon, Glatleider, sitting next to my mother on a hard chair
the wall. My mother's arms are crossed and her lips are pressed tight.
Her face betrays exhaustion. The doctor and my mother aren't talking.
is he here in the middle of the night, I want to know. But it's not
anymore. It's my first morning in the parallel world. On the hospital
next to a mustard colored pitcher of water lies a brochure about
care - a fifty-something woman with stylish salt and pepper hair smiles
and gazes up into a younger man's face, her son most likely. They are
happy with their decision about end-of-life care. When Dr. Glatleider
me trying to focus on the brochure, he ignores me and talks to my
"She could go to hospice for pain," he says. My mother's eyes meet
"I didn't have
any pain until this operation," I say. He lets out
a short laugh.
I draw my veil
denial tight around me. I won't accept his prognosis.
I can't. I have a four-year-old child to raise, eleventh grade students
to teach, a world to change. I am supposed to die an old woman, happy,
sitting in front of my window watching a revolution in the streets.
until after the holidays to start chemotherapy.
So I do.
cold and cheerless and gray, my mother, my sister
and I drive across town to an appointment with Dr. Valerie Israel at
Norris Cancer Center. She is their expert on lung cancer and cancers of
unknown origin. She will act as a second opinion in terms of which
Kaiser should be giving me and in which doses. Norris Cancer Hospital
free valet parking and an art deco interior with flagstone walkways;
television advertising is directed at an upscale clientele. But despite
the wreaths and Santa faces hanging on the walls and doors, the Norris
Cancer Center is a quiet and grim place on Christmas Eve.
In one of the
billing cubicles a polyester-pant-suited woman with
orange lipstick and a beehive hairdo clicks away at a computer. No
her mind is filled with all the things that need to be done: her
Christmas presents, the turkey waiting to be stuffed and roasted. She
with niceties. No merry Christmas, good afternoon, how are you feeling.
She cuts to the chase. "How will you be paying today?"
"Check," I say.
write the check for $500.00 and slide it across
the desk, letting my fingers rest on it for just a second, long enough
to make her look up, then I say, "Where do I go now?"
Someone will call you."
Across the big
desk from us Dr. Israel flips through my file, pauses
where something interests her and then flips some more.
My sister pulls
bouquet of tootsie pops, orange purple, yellow,
red, brown from her bag and offers one to the doctor.
thanks," Dr. Israel says, reaching across the desk. "Sugar
is my weakness." She chooses the red one, unwraps it and swirls it
inside her mouth as she talks.
She wields the
red tootsie pop like a pointer. "Well," she says aiming
it at me now. "Your cancer is Stage Three."
She catches my
eyes with her own. "B. Stage Three B," she says with
"I know," I
but I'm lying so I can get home and rest. The truth
is I have no idea that my cancer is Stage Three B, never operable,
of Three A, which often is. So far no one has bothered to explain it to
me. I am too tired and hopelessly uninformed to formulate the question
that seems so simple now: Why 3B instead of 3A?
Months later I
learn that Stage Three is divided into A and B. In
A the lymph nodes on the same side as the tumor are involved. This is
operable, depending, as I would soon learn on the skill level and
of the attending surgeon.
Stage Three B
inoperable. The cancer has spread to the contralateral
lymph nodes. The difference between Three A and Three B is determined
diagnosis by a mediastinoscopy, taking a sample of lymph node tissue on
both sides of the trachea, the test Glatleider didn't bother with,
sawing me open, taking a disgusted look inside and stapling me back
Dr. Israel now makes me a Stage Three B to fit me into the medical
that Glatleider has constructed. Stage Three B becomes an established
of my medical diagnosis, completely without scientific data.
recommends chemotherapy, taxol and carboplatin, and my
lawyer sister pops a chocolate sucker into her mouth. "Listen, I've
thinking," she says, and points her Tootsie Pop at the doctor. "I say
that's the recommended amount, we double it. The more the better the
I see it. Let's be aggressive here."
grow wide and her cheeks suck in to hold the red
tootsie pop in place. "I don't want to kill your sister," she says, and
smiles. But she never suggests any further tests or a need for further
The chemo nurse
rubs her thumb over the back of my hand. "You have
good veins," she says. Cathy, is short and chubby with a pinkish face
blond hair wisping around her neck. My mother stands at the door and
the nurse hang the first slick bag: taxol, made from the bark of the
Later in the
afternoon my mother browses the newspaper. I lean back
in my reclining chair, tethered to an IV pole by a plastic tube now
carbo- platin into the crook of my arm. I'm still drowsy and
from the benadryl they gave me with the taxol to prevent allergic
Outside it rains without stopping. The month since my diagnosis has
the coldest month ever. Some days the water comes down in ropes,
in cascading lead sheets. Rubber trashcans wash down Baxter and Fargo
in Echo Park. The sky stays dead and heavy and gray, the same gray as
ocean, the gray of the streets.
comes in wearing her white coat with the name patch
and the ink stains on the pocket. She presses my thick file chart to
with this disease have you cured?" I ask. The doctor
looks down, lets out breath. Her knuckles whiten on the edges of the
"No one," she says.
asked. I already know the answer. I've known it
for a month now, since I woke up in the greenish gray glow of hospital
weeks of chemotherapy I start radiation treatments.
You can receive up to 5,000 rads of radiation to the chest before
start to fall apart. Tissue doesn't hold together well and there is the
danger of bleeding to death during surgery, so halfway through my eight
week course of radiation I call Glatleider.
"How are you?"
"Alive," I say.
"I think the chemo is working. I'm feeling good and
I want an appointment with you to reassess my potential for surgery."
now I know more. I know that without an operation I have between a one
and five percent chance of living out the year.
I hear him let
out breath on the other end of the phone. He agrees
to see me. Call the receptionist to make an appointment, he says.
Glatleider is surprised by my good health. He barks
at the nurse to order an emergent CT scan and tells me to come back on
Monday afternoon to review the results with him. I go home full of
I even think that I may have it all wrong about Glatleider. Maybe I
"He didn't seem
so bad today," I tell my family. My mother and my
sister shoot each other a look that I pretend not to see. I call
I know and tell them the good news.
On Monday my
mother, sister and I cram into the tiny examining room.
I lie on the table anxious and excited. I breathe in, count the
breathe out, do it again, the way they showed me in the visualization
relaxation classes. We're waiting too long, I think. The news must be
otherwise wouldn't he rush in, all smiles? When he finally pushes
the door his expression is neutral.
"I have bad
news," he says. "There's been no change. An operation
is out of the question."
"But you said
be dead by now and I'm fine."
"I don't know
to explain that."
"What about the
chemo? Are you saying it's had no effect?"
"Has the cancer
spread? Is it any bigger?"
"No, no, I
can't say that it's any bigger." Later I find out
there's no way to determine whether tumor tissue is dead or alive
a biopsy. He should have ordered a biopsy but he didn't.
I leave the
examining room and start down the long hall toward the
exit. A rush of tears chokes me. A receptionist sees me and turns away.
"I'm sorry." I
hear Glatleider's voice and turn around. He is standing
in the hall flanked by my sister and mother.
"It's not your
fault," I whimper and for the first time since December
I think that maybe he has done all that he can.
"You can stay
my office if you want, until you feel better."
When will I
better? When my lungs fill quietly with fluid and
I die in my sleep as another doctor recently told me. Or maybe, if I
in his office, I'll feel better in just a few minutes about dying. I
smile. I shake my head. No, it's not necessary. I'm not worried about
embarrassment I might feel making my way through his crowded waiting
crying like a small child. I keep walking, threading my way around
filled with patients watching me with quizzical and sympathetic eyes.
sister and my mother follow a short distance behind me, stunned and
into the elevator and out of the cool of C Building into the bright
sun, the heat, the horns bleating, the fumes. All those people and me.
I feel as though a clear cylinder has been dropped over me, separating
me, finally and fully from the world I know.
This is what I
remember of the next three days: The two oldest of
my three children, Jon and Sara, are waiting when I get home. When they
realize what is happening they run out of the room in tears. I sit,
propped on the rough pine table reviewing insurance forms. I take a
and sleep. Death is certain now. A few months ago I had contacted
Veach the coordinator of the Ting Sha Institute, a retreat for cancer
Now she calls to see if I plan to attend. I wrap the black phone cord
my finger and tell her I can't decide right now. I don't know when I'll
be able to tell her. I take more ativan and sleep. I leave three
on Glatleider's voice mail before I finally catch him at his desk.
"I need to know
exactly why surgery can't work for me," I say.
"Has the cancer
spread too far or is it because of the tumor's proximity
to my aorta?"
"What do you
me to do?" His voice is barely restrained anger.
"Cut you open and staple you back up like I did before?
"No, no, I just
want to understand. I'm sorry. What do you think
my chances are now of surviving a year?" "Less than one percent. Is
what you wanted to hear?" he says.
calls again. I order my kids to tell her I'm not home.
Once I pick up the phone, not thinking and it's her.
says. "I don't want you to take that surgical opinion
as a death sentence."
"I have the
number of a very good lung surgeon at UCLA. Maybe
you should make an appointment."
I take more
ativan and go back to sleep. She calls the next morning
and I shake my head.
"Tell her I'm
here," I motion to my son.
tolerable position is stoned on ativan, curled into a fetal
position in a dark room with my face buried in a cool pillow. No sight,
no sound, no light. I'm like an infant that twists and twitches itself
into the birth position, readying itself for life, except that I am
Now that all
is gone I am not accepting death well. There is
nothing left to rage against, nothing to fight. My own body has
me and it will win. I feel none of the peace associated with the
other side. There is just me, then not me, the world without me in it.
I want to buy my four- year- old daughter a winter coat for every year
I won't be with her, but that won't do. She will need so much more.
calls again. I tell her I'm sick of doctors poking
me and looking at me like I'm already dead. I have run out of energy
Natalie," she implores. "What can one more appointment hurt?
I think about her question. I would have to uncurl myself, leave my
and go out into the light. I would have to make polite conversation
a receptionist and a nurse.
"No," I say. "I
appreciate your concern, but I don't think I can
The next day
calls three times before she reaches me.
My mother says,
"We might as well go. That way, if he says no too,
we'll know we did all we could.
At UCLA the
doctor finally orders my first mediastinoscopy. A week
after the procedure-a small incision above the breastbone and insertion
of a tiny scope enabling the surgeon to biopsy lymph nodes that line
trachea- I wait for results. If the nodes on the left are the only ones
positive I will be able to have surgery. My chances of surviving until
the end of the year will then jump from less than five percent to
around thirty five percent. It's my best hope, my last real chance. If
the cancer has spread to the contra lateral nodes, surgery is not an
A mediastinoscopy is the test Glatleider should have done first.
it has taken from early December until now, late July for me to know
Cameron, is unhappy with the CT films I've brought
from Kaiser. He clucks his tongue, " They didn't even use contrast." In
addition to a suitable CT scan, Cameron also has me have an MRI of the
brain, a bone scan and a pet scan to rule out distant metastasis. I
passed all the tests. The mediastinoscopy is the final obstacle to
I drive west on
Temple past Alvarado on the way to my youngest daughter
Sasha's swimming lesson. The amber light of summer casts shadows on
and the air begins to cool from another scorching day. In the distance
the sky glows gold and pink. I watch pigeons, puffs in shades of gray
white, burst from an abandoned brick building and fly in an perfect arc
toward the sunset. How could these birds that scrape flattened crumbs
bread off the asphalt of the school playground and bathe in the fetid
of Los Angeles gutters choreograph a flight so fragile, so perfect. For
an instant I believe anything is possible. I sit on a wood bench next
the pool at Los Angeles City College running my finger over its scarred
surface, the years of initials and proclamations of love and
scraped into the old wood. Sasha is the best swimmer in her class of
year olds. She is kicking up sparkling shards of water, oblivious to my
tortured waiting. I step outside the gate to check my messages. Dr.
voice is excited. He has good news. We can schedule the surgery. Tears
stream down my face as my fingers fumble to dial his number on the cell
"Oh good, It's
you," his secretary says, "He wants to talk to you."
report shows no evidence of disease in any of your
lymph nodes," he says, "not even on the left side. What Glatleider saw
on the films was totally dead tissue." As an afterthought Cameron says,
"Oh yea, and Kaiser has to pay for the operation. They already admitted
they were incapable of doing it."
Kaiser pays for
lots of procedures at other medical centers: bone
marrow and liver transplants, heart lung transplants.
though, is that the Kaiser surgeon must refer the patient
and authorize the payment. I leave messages with everyone I can think
Heads of departments, membership services, six or seven a day on
voicemail. My oncologist is out of town.
The day before
scheduled surgery at UCLA, an old friend, Terri,
who works as Kaiser's radiation oncology department's secretary, and I
meet outside her building on her lunch break and together we walk in
the few blocks to Building C. We pass the unmarked side entrance to the
basement where the CT scan machines are kept and stop for a moment in
of a vase of orange chrysanthemums on the stone steps of the main
building. Terri had introduced me to David Lu's mother who put the
there. She makes this pilgrimage with orange chrysanthemums everyday in
memory of her son who died in that building of leukemia at ten years
diagnosed finally after a year of various anti-biotic therapies failed
to cure his stomach pains and general malaise, too late for a
bone marrow transplant. I've seen her leaflet in front of Kaiser. In
leaflet she talks about the mistreatment her son received at Kaiser,
doctor who had tried to insert an adult-sized catheter in David's tiny
penis, then laughed at her when she complained about his pain. "You
get used to that. He has leukemia now," he said.
Stepping out of
the elevator we hear a distant voice and follow it
to Kim, a surgery department secretary speaking into a headset and
diet coke. Terri and Kim acknowledge each other with a nod.
"I need to see
Dr. Glatleider," I say.
confused. "Do you have an appointment?"
"No, but my
surgery's scheduled for tomorrow at UCLA and he should
have left me an authorization form."
"Well, he's not
here and he didn't leave anything with me." She raises
an eyebrow and slurps the rest of her Diet Coke.
"I don't know
to help you, ma'am." She turns away.
"Come on, Kim,"
Terri says, " Who's the chief of surgery here? Let's
locate him, okay?" The tone of Terri's voice goes from the easy banter
of co-workers to impatient, irritated.
for a couple of minutes, and then returns, "Dr. Dorazio's
on a phone conference. He says he'll come out to see you in a few
We sit in the orange plastic chairs and thumb through wrinkled copies
Business Week and Golf Digest.
We wait another
ten minutes for Dr. Dorazio, Chief of Surgery, to
finish his telephone conference but when he emerges from an office
in street clothes and carrying a briefcase he begins to hurry by us to
Terri says and motions to me. I step in front of
him and one more time plead my case. Dr. Dorazio looks away, checks his
watch and looks back. The skin under his eyes looks smudged "There's
I can do about that. It's a case I know nothing about."
"Can't you get
touch with Glatleider?" I ask " Can't you call
my doctor at UCLA? Can you even look in my chart so you will know
about my case?"
"I'm in a hurry
now. I'm on my way to a meeting." He glances at his
watch again and lifts his briefcase as proof. "Maybe if you call me
He tries to thread his way past us but we stay with him. He can't move
without pushing one of us out of the way.
Terri takes a
step closer to Dr. Dorazio, "You're the chief of surgery."
She points an accusing finger. "You didn't get that title for nothing
we're not leaving until you do something. What happened to all that
about patient care?"
"No, we're not
leaving," Terri says. "We'll stand here until you
give us the form or until security drags us away, and that won't look
good, will it? And even if that does happen, we'll be back, and we'll
friends, lots of friends."
and sets his briefcase on a counter. He pulls his
wallet from his back pocket and thumbs for a card. "Here," He hands it
to me. "Have your surgeon at UCLA page me and if the story makes sense,
I'll approve it."
the card and wipe at my tears with the back of my
says smiling, "I'd better get back to work so I'm not
late from lunch."
My surgery at
UCLA is scheduled for six a.m. At that early hour,
before the heat of this hot end of July begins to broil the city, Dr.
will open my chest and remove my whole left lung. Then he will gently
my pericardium, the thin membrane under which lies my beating heart,
scrape away any tumor that has attached itself to my aorta. I'm not a
nervous. I feel a vague anticipation, like I feel when I have to get to
When I arrive
UCLA the receptionist tells me that Kaiser hasn't
notified them of the approval to pay. Other patients look up and shake
their heads. A mother holds and rocks her small daughter, strokes her
kisses the top of her head. The girl will have a kidney transplant
An old couple holds hands. Infuriated, I punch Glatleider's number on
payphone hanging next to the waiting room door. Of course there is no
I call back several times leaving a series of messages. "I'm standing
waiting to go into the O.R.," I say. Now you're holding up the whole
schedule for UCLA. I hope you're happy." The receptionist smiles and
"Will you call
Dr. Cameron," I ask. "Maybe he's heard something."
A few minutes later she summons me to her desk. "He wants me to send
in," she says. She doesn't say whether Kaiser has approved the payment
or not. I have the operation without knowing.
Dr. Cameron pulls a chair to the side of my bed.
"The operation was a success," he says. We sit and smile at each other
for a few minutes both sort of shaking our heads in disbelief. He tells
me that he removed my left lung and that when he started to work on the
tumor around the aorta it was already hard and dead, like dry clay.
"I touched it
with a scalpel," he says, "and it fell right off. Dead
Glatleider tell me nothing had changed?" I ask
"He just looked
at the CT films which can show live or dead tissue.
That's why in cases like this you definitely need a biologic sample.
had an excellent if not complete response to the chemotherapy."
"It isn't a
cure," he reminds me. Cancer's tricky, but he's hopefully
optimistic. He will watch me closely for the next five years. Five
five years five years like an incantation. The words dance in my head.
You can Email
Natalie at email@example.com
CancerGuide Page By Natalie Smith Parra.
2002 Natalie Smith
Parra. Last Updated May 13, 2002