| home | workshops | writings | publications| novel excerpts| biographical | resources | links | contact|
The writers you will encounter here have all participated in
the journey of illness in various and often multiple ways. We have learned
that distinctions often blur between the sick and the well, and that caretakers,
nurses and others involved with cancer patients benefit from the healing that
comes from expressing themselves as much as the patients do.
.jpg)
This moving account of working on an oncology floor was written by a young nursing student as she struggled to relate to her patients with her full humanity.
I spent three months working on 5South at MCG Hospital in Augusta, GA as part of my senior spring semester clinical requirement. This particular unit specialized in Oncology, with a Bone Marrow Transplant Unit attached. The exposure I had during this time was significant, and I still suffer many of the hardships that are associated with the nature of these patients. Many of these people who suffer various forms of cancer all have one thing in common: a fight for life. I learned a great deal from these patients, they taught me the fragility of life, and the gifts apparent even in the midst of despair. I still at certain times battle disassociating my life from theirs, and find it very easy to become preoccupied. However, there are two particular instances that stick out in my mind where I was called to patients to guide them through troubled times. I still to this day am trying to uncover exactly why these two memories stay with me, but I do know for a fact that they taught me important lessons.
The first is a story of a 19 year old African American woman who was diagnosed with a yolk sack tumor and happened to be 7 months pregnant. This tumor was pressing against the baby’s head, and when it was detected, an emergency C-section was ordered. Her tumor was removed; her baby was delivered and rushed to the Neonatal Intensive Care Unit, where he was put on strict monitoring. Meanwhile, the woman was transferred to 5South, where she was to receive chemotherapy. This woman was a particularly interesting case because she had been transferred to various hospitals in the area prior to this time because she had been refusing treatments. When she came onto our floor, the nurses informed her of the course of action that needed to be taken, and she promptly left the hospital. Standard protocol allows 1 day’s time for the patient to decide what they would like and then return if they wished. However, time exceeding 1 day prohibited the patient from returning without being reprocessed. We had basically expected that the patient would refuse treatment because she had refused it for the past couple of months. She was extremely cold and distant to the health care providers, and made it clear that she was not interested in seeking help. However, she did return about 10 or so hours after leaving, and was agreeable to staying. However, that first few hours or so she refused any IV access, and was not allowing anybody to draw labs on her. I was assigned to this patient when she was in the throws of noncompliance, and was intimidated at first by the task at hand. When I walked into her room that morning, she was being aggressive with the nurses, not allowing them to invade her space, and refusing everything. However, with time and convincing, IV access was attained, and she was amenable to having blood drawn for labs.
I was sitting in there for this, and throughout the entire volatile interaction she was having with the nurses, I kept my eyes on her to watch her every movement and facial expression. I wanted to try and figure out without talking to her what she was feeling and what her reasons were for being chilly. I attributed the chilliness to her cultural background, and didn’t question why she was being difficult. However, when I was about to start my assessment, first I sat down on the side of the bed and told her a couple of things. I said, “I can’t say honestly that I know from experience what you’re going through, and I can’t tell you what you should do to handle the situation. I can encourage you, and tell you that everyone working here today has your best interest at heart, and wants to see you get well. We want you to be there for your son. Now, tell me what you are afraid of.” She looked at me with a tear running down her cheek and simply stated, “I want to be a good mother, I don’t want to be sick, I want to be healthy and want to be there for my son. I can’t even see him now, and I’ve barely seen him since he’s been born.” I looked at her and could see the fear in her eyes; I could see the sadness and was eager to change this around. I had thought that a visit to see her son would relieve a lot of anxiety for her, and within a very short amount of time, the doctor agreed to this but was eager to start the chemotherapy process. However, at this point she was reluctant to initiate the medication regimen. I asked her that if we went down to the Neonatal Intensive Care Unit and saw her baby, would she be agreeable to receiving chemotherapy. After hearing this option, she calmly said yes. I felt a sense of accomplishment in my role as a nurse.
After walking down to the Neonatal Intensive Care Unit, we entered the room and were confronted with tens of babies hooked up to various monitors, struggling to live. We found her baby, and the interaction between the two of them truly blew me away. Her icy demeanor melted away, and she transformed into a nurturing and loving woman. She rocked her son and talked to him, and loved him. It was an amazing moment for me, and I saw that he was her world. Two hours later, she started chemo.
This second story involves a 30 year old man who is suffering from Leukemia. He is an incredible person, with a great spirit and quick wit. He has a positive outlook on his situation and sees his circumstance with optimism. Unfortunately, his prognosis is not as favorable as his attitude, which makes his circumstance much harder to witness. He was recently told that there was one last attempt to save him which relatively is his only chance. There are new chemotherapy drugs that are used on patients that have not even undergone clinical trials. Unfortunately, these patients do not have time on their side, and so they are willing to take a chance and a leap of faith.
Well, one day the doctor walks into my patient’s room, delivers the bad news that this is the last chance he will have at life, leaves, and gives the family time to process the information. I had the chance to sit in there with the patient and assist them in coping with the reality of it all. I look over and see this grown man silently weeping in his bed. The patient was lying on his left side, his eyes glazed over. I immediately walked over to the wall and grabbed one of the many pictures of his one year old son. And I said to him, “every single time you have the feeling that life is hopeless and there is nothing left to live for, I want you to look at this picture and think of your son. I want you to fight for him, and you give it every single ounce of strength that you’ve got because no matter what happens, he will carry you with him always through his own life. So you use your might and look to him for guidance, for he is your world.” And he said, “You are absolutely right. He makes it worth fighting for.”
And isn’t it the truth? Once again, I felt like I had gotten on the level of the patient, treated them as a person instead of treating them as a disease, and was able to see their situation for what it really was. I was able to see their struggles, identify them, and use my nursing skills to help ease their pain and anxiety.
I learned an incredible amount during this three month period while working on the Oncology floor. I was able to not only see life and death in a whole new manner, but I was able to embrace it. Still to this day I struggle with disassociating myself from their conditions, but I feel like as time passes, it becomes more of my past, and less of my present. However, I take what I’ve learned from those patients and use it in my everyday life.
Two Hairs was written by Diane Ehlers during her husband, Harland's struggle with Hodgkin's Lymphoma.
Two
Hairs
Just
two hairs
On
the back of the chair
Where
he sits.
I
touch them, the symbols of what is
And
what will be.
Two
hairs now. There will
Be
more.
It
will all fall out,
The
nurse said.
For
now,
It's
just two hairs. They
Won't
be missed.
Everything
still looks the same.
Nothing
is the same. .jpg)
Diane Ehlers
April 9, 2004
Finches was written during Jane's treatment for breast cancer, which was diagnosed shortly after her sister died of breast cancer.
Finches
Jane Okrasinski
Betsy Gallant was in Stage IV breast cancer when she joined the group in 2003. She fought valiantly, offering her love and support to all who knew her. This poem was written the spring before she died. There is no expressing how much we miss her.
Pathology
101
Reluctantly I trudge down the endless halls of the hospital
on an errand to pick up my “slides”—
pieces of glass with tiny fragments of my tissues on them,
proof that all is not well inside my body.
The pathology lab trusts me to transport these slides from one hospital to another
so another doctor can confirm tht my body is sabotaging itself.
The young girl in pathology hands me a fat envelope,
the sticky closure barely holding it together.
I’m dubious about how well the slides will survive
And, seeming to read my mind, she says:
“I’ve got them so well packed in there that you could throw them on the floor and
they wouldn’t break.”
Throw them on the floor, throw them on the floor….
who would want to do such a thing?
But the thought bounces around in my brain
and gradually gains a foothold
like a fertilized ovum finding a home in the lining of the uterus.
At home I study the envelope that is almost unglued.
It’s so easy to release the closure, tilt the envelope
and watch the slides and a wad of reports
tumble out onto the dining room table.
The reports are grim reminders
of the seriousness of my physical condition
and I throw them aside.
The slides are….beautiful.
Like something my lab partner and I struggled to assemble—
wasn’t it just yesterday that we hunched over the black slate counters
in the lab that always smelled of gas from the jets
as we tried to follow the “recipe” for a successful slide
and timidly lit the Bunsen burner.
We often stole glances out the tall windows
to see the wind blow the last leaves off the trees
as the first flakes of snow began to blanket the foothills.
Are you having company for Thanksgiving?
What do your kids want for Christmas?
Our musings caused many a slide to fail the scrutiny of the professor
and we threw them in a large red, plastic container,
listening to them smash against each other.
We’ll try again,
And the next one will be perfect.
The pathology reports say my slides are not perfect,
not the kind of perfect I will accept.
As if I’m the professor now,
I think these slides need to be destroyed,
But there’s no big red plastic box in my house.
I gaze out the big window of my dining room
and see the cars go by on the rough asphalt of the
country road in front of my house.
Perhaps if I could throw the slides with great force on the road,
they would smash into a million pieces
and gradually wear down to sand.
People with dogs and kids in their cars
would drive over the sand,
their minds on a million different things
like soccer games and birthday parties.
They would never know
they were making my disease disapppear
so I can start over
and make the perfect slide.
May, 2005
Betsy Gallant
Stephanie Paladino works as a translator for the local hospital. She often writes with great empathy and beauty about the people she encounters in her work.
PHYSICS
It defies physics.
Out of the loins of
such a thin, diminutive being,
how could four strapping, strident, near-adults spring?
But this woman is no shrinking violet.
Her legs may be sticks, her arms twigs;
a grayish down blurs the border
between chemo-smoothed pate and sky.
With this last admission, her legs
wouldn't listen,
folded under her,
were indifferent to
the flood of red loosed
from between them, and
mopped up by nurses.
For a while, we lost contact
with her.
Like the shoot of a forest floor plant,
she dwelled for a time in the humusy dark,
still and silent to us
but in constant exchange of whispers with
the dark, fertile muck,
discussing timing, and options.
She chose this time
to be mother again
to those strapping children, rather than
return now to her own mother.
And pushed up and out through the
layers of debris,
till she found the light of the hospital room,
and demanded that, in the future,
she be resuscitated,
though the doctor clearly thinks it foolish.
As soon as she knows up from down,
she is on the task of looking after her daughter,
teenager who has born the brunt of
too much knowledge, things she
shouldn't have to know and feel
so young, running
in the street with a violent crowd,
staying out all hours.
But who phones the hospital room
of her mother incessantly,
about sibling rivalry,
about why the new bag of IV medicine.
That same daughter also knows
a secret about
her mother's illness,
that must scald her young heart.
Mom can't walk, but
she is right behind her daughter,
worried about her safety.
They tell her she hasn't long,
that she is increasingly defenseless,
deteriorating.
But she won't retreat,
won't hoard her precious life force
against the day there is no more
to draw from.
From her pillow,
she beats the bushes.
She will even put aside the shame
of asking strangers
to nab her daughter from the streets,
confine her,
will even risk
a vengeful child's spilling of a hard-kept secret,
in order to defend that daughter's life.
She may be tiny, thin,
like sticks and twigs,
but she isn't small.
They continue to tell her
what bad shape
she's in.
She continues to not fall apart.
They think she's in denial.
I think she's in full possession.
S. Paladino
4-14-04
This piece was written by Diane about a year after her husband, Harland, died. We have learned through Diane that grieving is an ongoing, non-linear process, which requires time and energy and support.
To Channel the Unvoiced Scream
.jpg)
I know it’s there. It tries to come out when I remember.
Actually, it’s not remembering at all. It’s bringing my thoughts to what is
always there. And when that happens, whether by a small sound, a familiar sight
or maybe a glimpse at a picture of him, the scream comes. And stops. And goes
back in.
What would it sound like if it ever came out? Maybe it would be a long, drawn-out whyyyyyy? slicing through the air all the way to heaven. Or perhaps there would be no word at all, just an animal sound of the worst pain. I heard a rabbit scream once. Rabbits don’t usually make any noise, but this one had been attacked by a cat and much of its skin was pulled off. It screamed the most awful scream I had ever heard. Maybe it would be like that, coming up from the deepest place and gaining speed and volume as it rose, finally to escape and send its wave into all the open spaces and the closed spaces too. Maybe it would be like that.
All I know for sure is that the pitiful little sound that I manage to produce is not the real scream. The real scream is waiting, strangling itself inside.
Diane Ehlers, September, 2006
This was written by Jeannine Collins who is a cancer survivor as well as a hospice volunteer. In her painterly prose, she demonstrates "witnessing with love."
A Communion of Sort
Seated on the tattered gray sofa, her back straight like a soldier at attention, she faces the t.v. Voices-- loud, harsh and angry--fill the darkening room. It is after five this winter day. Neither the overhead living room light nor the street lamps are lit yet. The room is warm, holding the heavy odor of cooking. A green army blanket embraces her bony shoulders, opening to expose the protruding collarbone, which caves into the flat brown chest without breasts. Above the frayed and faded blue nightgown, a heart of rhinestones dangles where a cleavage once was. Large brown eyes stare through the t.v. screen. Figures move, letting her eyes follow, blinking only as a reflex to a loud sound. Over the high unfurrowed brown brow, a blue cotton cap snuggly covers a bald head, resting above perfectly sized and shaped ears as ever sculptured on a human being. Each ear is punctuated on the lower lobe with a child sized rhinestone earring. Her nose is fine and long, flared slightly at the nostrils where her warm uneven breathing enters and exits. Bones high and proud stand out over hollowed and sunken cheeks. Not one wrinkle reveales her 62 years. The square chin, though, holds the beginnings of two deep creases easing down either side of the long silken neck. Like a splendid elegant swan with the coloring of antique walnut, she holds herself without wavering. Her profile is akin to an Egyptian Queen..
Following the drape of the blanket down over her shoulder, the right arm emerges, swollen and puffy, three times its normal size, and lies lifeless and obedient by her side. The left arm pushes out a bony elbow allowed to rest on a worn red velvet pillow by her thigh. The folds of the blanket in her lap uncover the hands, hapeless and crossed at wrists as though tied by invisible cords. These hands, large yet delicate, accustomed to cleaning and soothing, now motionless, span long fingers with joints untouched by the rages of arthritis, tapered to neglected fingernails the color of bone china. There are no rings or even the markings of rings to adorn the grace of the hands. The final folds of the blanket hangs below her knees, where like an afterthought, two squared legs protrude from the creases of the gown. A pair of black woolen socks hug the ankles and feet that rest on a small tapestry covered footstool..
The t.v. screen flashes an image of a blonde Shirley Temple-like child who dances and twirls to the music of some familiar tune played softly on a piano. The woman startles as though awakened from sleep and her eyes focus. Like a rising sun, a smile opens her lips, than widens to let out a deep throaty laugh. The open mouth reveals a darkened space, the absence of upper front teeth. As the child disappears from the screen ,the woman pulls her attention, like an antenna , back into her inner self. Her eyes remain open, staring ahead into another world. The mouth, closes once more, the full lower lip quiveres. The hands, still crossed at the wrists, flap slightly like a wounded dove.
“Mama, Mama”, the son calls softly as he steps into the room. A short, husky, handsome darked skinned man with a pencil mustache on a round, somewhat anxious face, he smiles into her eyes. He holds a styrefoam cup brimming with grapes. Gently he eases into the space next to her. “Mama, I have some of the grapes you like.” Slowly, gracefully with effort she turns only her head, looks into his eyes and returns his smile. “Yes,”, she breathes into a whisper.
One grape at a time, he carefully places the fruit into her open mouth. A perfectly round purple sphere placed on her tongue, his large brown fingers, shaking, delicately touching her soft pink lips as he feeds her, allowing her time to chew, savor and swallow until she is ready for the next grape.
“Remember Mama,” almost in a whisper, “when I was a baby, you fed me and you said I was your baby bird? Now you are my baby bird, Mama”.
This poem was written, as Cathy said, in "chemo fog." It is is her cry of the heart about her recurrence, and how she wants others to respond to her in this situation. The poem shows how she doesn't want to be defined by her illness nor treated as an invalid.
DON’T BE SAD FOR ME
YES, I HAVE CANCER. . . .
YES, I AM IN CHEMOTHERAPY FOR THE 50+ TREATMENT
BUT, PLEASE, WHEN YOU LOOK AT ME. . .
DON’T LET ME SEE YOUR FEAR OR YOUR WORRY AND CERTAINLY NOT YOUR PITY.
AS FOR ME---I AM GOING TO BE OK.
I AM GOING TO SURVIVE FOR AS LONG AS GOD ALLOWS ME,
PERHAPS LONGER THAN YOU.
AND IF I DIGRESS---IF MY PHYSICAL CONDITION DETERIORATES,
PLEASE DO NOT SAY TO OTHERS,
‘HOW SAD’, ‘HOW AWFUL’,
‘HOW HORRIBLE MY CONDITION HAS BECOME,
OR ‘HOW MUCH TIME I HAVE LEFT’.
YOU CAN SAY I AM COURAGEOUS, FUNNY AND FUN, INDUSTRIOUS, BUT
DON’T TALK ABOUT ME LIKE I AM DYING.
I WELL MAY BE---BUT
JUST KNOW THAT I BELIEVE I AM ON MY WAY TO A BETTER PLACE…
A PAINFREE PLACE WHERE I WILL SEE OTHERS I HAVE LOVED AND LOST
AND I WILL WAIT FOR THOSE I LOVE WHOM I LEAVE BEHIND.
JUST REMEMBER---YOU CANNOT SAY THE “D” WORD (DYING, IF YOU WILL)
BECAUSE I AM NOT DYING TO LIFE, I AM OPENING THE NEXT CHAPTER.
I WILL SPEND MY TIME CONTINUING TO RUN RACES FOR MY HEAVENLY FATHER.
THAT’S WHAT I ENJOY. . .RACES. AND WATCHING FOR THOSE I LOVE TO JOIN ME.
BUT MOST ESPECIALLY REMEMBER WHAT I SAID- “DON’T BE SAD”,
CWL
This is the door of a simple person. One with no flair or need for attention. The person who lives behind this door is satisfied with life and has all of her simple needs met. When you open this door, you enter the world of a clean, orderly, precise person. The worn steps and old frame of the door are maintained well. The glass is clean. The woman likes to keep her world orderly because she is afraid of all the chaos that waits for her out in the world--the world beyond the door. Inside the door, her home for thirty-seven years, she has some semblance of control. This, of course is an illusion, but one she firmly believes.
One time right on the street near the door she was beaten and robbed. She was so frightened and looked longingly at her door--so near to safety, yet lying bleeding on the street for all to see. Once the police arived and took her information she hobbled back to the opening of the building that represented the world that was known.
She doesn't venture out much anymore. She has her grocieries and liquor deliverd. If someone knocks, she never answers unless they have called to say they are coming. She is safe.
Sally Hitchock, September 2007
These are just a few selections from participants' writings. To see more, follow this link.
| home
| workshops |
writings |
publications|
novel excerpts| biographical
| resources | links |
contact|