Sharon A. Bray, Ed.D.

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Cancer In Our Words
Writing from the Stanford Cancer Center Workshop




AFTER THE AFTERMATH                                   
By Ali Zidel Meyers
 
After the aftermath
there will be
you
and with luck
one or two
of those you love:
the smell of their breath
the touch of their skin
the sound of their voices
yellow as good news
ablaze with anger
purpled in hurt
periwinkle soft in their beds.
 
One morning
the yellow light will pierce
the shades
which slowly raise
a few millimeters,
and climb in time
if only first
in your mind
letting you lift
each limb,
fill flat lungs
with sweet, slow breath,
catch yourself in a blink--
pregnant with all that is left of you--
all that percolates
and waits
with patience by the door
to exit
and sound its raucous voice
in the world.


 

I REMEMBER
By Phyllis Freeman

I remember the songs of the birds singing
I remember the flowers blooming
I remember the weeds I pulled
I remember the dance I danced with you
I remember my twin and I laughing
I remember the breathe of the dog
I remember the cries of my babies
I remember their first steps
I remember their artwork
I remember my son Paul’s beautiful art work on his bedroom wall
I remember their weddings
I remember the grandchildren as babies
I remember the love I have for them
I remember the love


 

FAST FORWARD
By John Fiore

We played our last round of real golf today, a sad conclusion to 70 years of frustration on the links.  We don’t have a lottery chance for a tee time at a golf course for thirty more years, and the odds then will be much worse than this time, maybe 1 in a million.  It’s too damn bad, too, because my game had been coming around the last thirty years.  I still feel physically well, so I have to find something new to do.
That’s one of the many things that has changed since the Great Cure back in 2012, when stem cells were commercially ready for curing cancer, Alzheimer’s, and other aging problems and other diseases.  Everyone thought this was great, for a while, until things started getting crowded.  Really crowded.  Not only were people not dying, but they were much healthier than before.  Now there are way too many healthy people, jamming up the parks, malls, cities, everywhere.  And hardly any of them work since the food production wave of the twenties, and colonization of the moon and Mars for food production.
There really aren’t many reasons to leave your house anymore, when simulators can recreate any experience, from golfing to dating to high-risk adventure, right in your house.  All your services and supplies are robotically delivered, so there is no struggle or strife.  The Endless Optimism Act of 2025 created the structure that provided all citizens with Soma, to make them want to keep living, and with Exerall , to keep them in shape.  But now, with 28 billion humans covering the earth, things are getting out of control.
I am glad to have survived cancer back in the early 2000s, but I wonder if we haven’t pushed the equation too far the other way.  The Earth Coalition to Reduce Population has just been created, so we may have something like cancer come back to earth.  The prison population has surged more than would be expected just by healthier people.  There is less regard for life, since it seems endless and without repercussions.  Many years ago, we could count on dying to make most of us cherish our lives and the lives of others.     


FOLLOWING THE PROGNOSIS                                                                                                      By Ann Emerson

it is important that the world does not change
even when our hair is a memory and the food
we put in our mouths tastes of tin.  Even while
we grow thin in draped gowns, whether
we smile or are uncared for, the stars
rise over our homes of old wood where
the beloved cat, his eyes staring moons,
awaits our return.  When we are given five years,
let us tend those who have one, dress as if
for special occasions and meet at Japanese
gardens.  It is permissible to cry when we feel
the wind toss the flowering trees. Let us place
ourselves, twigs of white blossoms in
water so that we shall root, and thus each day
grow more and more into the world.


 

SEASONS OF CANCER
By Nancy Tune

Summer

Cancer broke the indolence,
sped up the pace, raised the stakes.
No hammock lazing bee drowsing time
this season. Get your marching orders.
Learn which building houses which
clanking, shrill machine.
Out of the sweet bright world into
dim chill cellars built by
science. Details pile up heavy,
so much awful information.
What summer novels this year?
No stories, no beloved words,
just nasty acronyms that say Too bad.

Fall

Exhausted tumble into autumn,
even now my favorite time.
I am reeling, make no plans.
More time to feel the light shift,
think about the planet’s tilt,
moving our face away from the light,
shaving the days short, cooling the air.
Time to harvest, bring in fuel,
make sure the doors are solid,
while all around us, the world
is sinking slowly, beautifully, into death.

Winter

Quiet, white, precious light
thin and rare. Time to hide
and dream of ghosts and
what will happen if the sun
is gone for good. Make peace
with the cold. Watch the chemistry
of yeast and sugar feed the young.
Eat light, dream deep, and wait
for the light to fatten and find you still here.

Spring

California blossoms early.
Quince comes up fast,
paperwhite and hyacinth,
fruit trees pop, roses sprout
green, straining to flower.
But I am running out of time.
I love the color, need to savor
every petal, every scent,
before I go. So slow, please
slow, stay and let me watch.


 

THE SCAR
By Karen Mann

There are so many scars.  Are there 9 or 10 now? I lost track after about the fifth major surgery amid a parade of surgeries, most of them orthopedic, most of them screamingly painful.  I suppose, though, if I had to choose,  that it is the last, most recent one of which I am now most conscious. This scar was supposed to be nothing at all-- “a couple of inches maybe, a bit tender for a few days” said the orthopedic oncologist. He lied.

This all started some weeks before when I first knew something was wrong. I had arrived back at my motel after an MRI and found 5 messages from my neurosurgeon.  A brilliant and caring man, he had always been prompt about reporting lab results but this was unusual even for him.  I had come back to Stanford for a re-evaluation because a new type of pain had started up in my spine (as if the old pain hadn't been enough).  This, coupled with decreased use of my arms and hands had made be decide that the trip back down to Palo Alto was  important; I expected the worst would be yet another spinal surgery, a not-infrequent occurrence since childhood, when the pain and weakness began and I first dreamed, fearfully, of being in a wheelchair. But the neurosurgeon didn't give me the usual news. In a voice full of compassion, fear, and a little evasion, he told me that there were tumors on the scan: thyroid, shoulder, spinal, and lymph.  My world shattered and I felt utterly naked and icily cold as I asked, “Larry, are you telling me I have cancer?”.  I could tell he wanted to say “ no”, but the answer was in the affirmative, along with talk about referrals to the Cancer Center and how he would be there for me throughout and so on.  Mostly I just heard the yes.

There were so many months of tests after that: 5 MRIs, biopsies, injections, prognoses and predictions but it is the scar that summarizes the aloneness and betrayal of those months. I learned, for example, that no one wants to tell you the truth about the “C” word.  Partners, family, friends and most doctors lapse quickly into words to placate, to hush one from speaking the awful truth that we are mortal; it is almost as if they are saying, with considerable desperation: “please, please, can't we talk about something else?”  No one wants to really believe that someday we all will die, even themselves.  I didn't want to believe it either but I did want to talk about it.  Except for one elderly Cistercian monk-friend, who is not afraid to die, it seemed everyone, in one way or another, sought to lie to me.  

Maybe that is why the orthopedic oncologist lied too.  I should, of course, have been instantly suspicious of his facile reassurances.  They needed to biopsy a tumor situated in the muscle beneath my shoulder blade as well as the lymph nodes in my left shoulder.  The tumor was large, and accessing it required drilling through my scapula.  That this process would have created just a tiny scar and be only a bit tender for a few days was, of course, ludicrous.  I should have also been suspicious when he indicated I would need to be in the hospital for a day or two.  But by this time I too was comforted by the lie.  I was not going to die and this was not going to hurt.  A simple in-and-out kind of thing (though none of my other biopsies had required surgery or hospitalizations), a simple thing and I was not going to die.

The wakeup call began when the orderly who was wheeling me into surgery, over my loud objections, disconnected my oxygen tube (on which I am dependent 24/7) saying “it will only be a few minutes.” But  24/7 does not leave many minutes allowed for no oxygen, of course, and by the time I reached the surgery I was gasping desperately for breath and the anesthesiologist was yelling equally desperately  to “breathe deeply, breathe deeply!.” as he put the oxygen mask over my face. When I recovered from my desaturated blood I then heard the puerile bantering of the medical students in the room and observed the saws and drills standing by which were about to do their work on my scapula.  Neither inspired confidence, nor in the least bit conveyed the feeling that this was a minor procedure guided by competent hands. Later, before the anesthesia took hold, I listened to the rudimentary instructions being given to the same students; I was very afraid.

My next crushing understanding of the doctor's understatement regarding the procedure I had just undergone occurred when I woke up in the Recovery Room in truly terrible pain, with a crusty nurse telling me, loudly, “we can't take away all your pain.”  What I felt bore no resemblance at all to the word “tender “that the doctor had used.  Rather, it had a lot to do with the word “violated”: drilled, cut, torn, burned, then sown back together in a 6” long, burning red slash.  It was not as long as some of my other scars, but it was certainly the most surprising.  And yes, I could no longer move my left arm without excruciating pain. The doctor suggested the next morning that I spend another day in the hospital but I saw nothing there but more pain and I had started to become very, very nauseated in part from pain not mediated by prompt medication.

Based on the doctor's predictions I had planned to return home with my partner to our beloved Mt. Shasta in 3-4 days; it turned out to be 9 days during which time I laid in the motel room with yet more pain, nausea and utter disability where my arm was concerned.

The pain did subside for the most part after about a month but I never got the previous use of my arm back; I do, of course, still have the long scar which was supposed to be so small and which periodically smarts and tugs to remind me of the vagaries of medical practice and the “C” word which no one wants to speak.


 

ON DAYLIGHT SAVINGS TIME
By Joan Moeller

It’s spring, but not.   The clocks have been turned ahead diligently, but the crisp wintry air still freezes my garden; the rebirth remains delicately balanced in the challenge of fragile green shoots fighting for ground within the lost hour.
It’s bedtime, but not. I reset every timepiece an hour ahead myself, in the house, in the dark, padding barefoot thru the halls and cupping a candle, like some ancient waif looking for the secret room and lost in the lost hour.
 
It’s Sunday, but not.  I’ll sleep under the hum of the new urban moon, planes will lose an hour and fly unheard overhead, the night-trains will rumble thru town so late I’ll never hear them till after the daylight sneaks in, after the lost hour.

It’s dawn, but not.  Instead of the slow bleed to daylight of fall’s dawning breezes teasing my curtains to waken me, a new sun bursts thru to me – the lazy sleepy kitten – I jolt awake grab everything and rush out frantic to catch the lost hour.

It’s nightfall, but not.  The daylight has been saved exhausted.  For hours spent day-dreaming my future it’s been a pleasant day; I arrive late to dinner and tea on the terrace, to see the quiet onyx blue of twilight linger longer for the lost hour.
  

It’s cancer, but not~


EDGINESS
By Jasan Zimmerman

I still get edgy when I go to a doctor’s appointment or visit a hospital for any reason, twelve years after my most recent bout with cancer.  It doesn’t matter if it’s a routine dermatologist checkup, a thyroid scan, or a writer’s group at the cancer center.  My degree of edginess depends on the nature of my business there, but it’s always present.  It gets worse if I have a worry or fear about the outcome of the appointment, which happens ninety-nine percent of the time.  I get road rage in the parking lot, annoyed or frustrated at the hospital labyrinth, and upset that I have to wait to be seen.  Usually I have something to read, so that sort of takes the edge off until I get to the examination room. 

If it’s a new doctor, I have to go over my history, followed by the inevitable, “You’ve really been through a lot,” or some version of that phrase.  I get even more annoyed and frustrated if they haven’t read my chart and just automatically assume that I’m healthy because I’m young.  I am, hopefully, but it’s taken a lot of work to get there. 

It’s easier for me to just say, “Read the chart,” instead of giving a soliloquy about my long and storied medical history.  Then I see how they react.  If they listen to me, everything is going to be cool.  If not, things might get ugly.  There’s one head and neck surgeon who is only allowed to see me and examine me if every other head and neck surgeon died in some worldwide head and neck surgeon catastrophe.  Even then, he’d probably face my wrath. 

I need a doctor to understand that and treat me with delicate caution until he or she proves their worth and earns my trust.  There’s a give-and-take that should be equal between the physician and patient, but most physicians don’t come down from their ivory towers long enough to realize that.  I need to start giving seminars on how to treat patients because I’m sure I’m not the only person who gets nervous or feels on edge when they enter the walls of the stark white hospital.


 

UNSAFE AREA:  DO NOT ENTER
By Nancy Bowker

When I see the sign I am already on the wrong side of it, the cancer side, and there is no going back. I feel a strong surge of irritation when my friend Linda writes “Breast Cancer 101” on the tab of a manila folder – no, this can’t be happening to me. It’s just not possible. After all, I have young children.
          But following the sign that said “Monday night 5 p.m. support group” was the smartest maneuver I made. There was the lawyer with the snapping icy blue eyes saying “I feel like crap” and “I’m so tired of feeling like crap.” Well, I had been hanging out with five-year-olds and church people, and it hadn’t really occurred to me someone could say that or even that I could say it. Then another woman in the support group so wanted it to be happening to someone else that she used her middle name – in my case I could have said – so this is happening to Kathleen, not really to Nancy, and so that’s ok, it is happening to the Kathleen part of me. Eventually we come to rest in our own skins and she told us her real first name. There was the young grandmother with grandchildren named “bubs.” There was a stay-at-home mom and a schoolteacher.
          In the support group they might have been holding “I will be your friend” and “Walk with me” placards. And so they are and so they did. Until my two dear friends came to the sign “Road Ends.”
 







Impossible to Escape

By Ann Emerson

I admit to being owned by you,
shaken as if by trees at night

that don't make a sound.
The membrane of my heart

is torn, admitting tatters
of light:  no one told me

love is your waking up each day:
for you the sun shines.

Yours are handfuls of tears
and medicine, but walk
because you can, barelegged
in the dark green grass.

There is no ruin of beauty,
the stars are not fish caught in a net
 
and you will never be alone.
I had not seen it coming, this poem,

my hand reaching for yours
and our blue long sky.

for Deborah



Cancer Stare Down                                

By Ali Zidel Meyers

 

 

We met in broad daylight,

not quite the dark back alley I imagined:

no garbage bins or scurrying

no wrought iron covered windows

cracked and gashed from thrown stones.

 

I stood at the corner of 4th and Duncan

feeling the sun’s warm gravy down my back

wind flowing along my skin like a symphony

a perfectly peaceful moment

 

when you caught my eye and stared me down

like the first time I realized

people lied

in 4th grade when Eliza and Amy

pulled one over on Ms. Yearling

and wove me in:

that grave look in her eyes

muffling my words in her holey blanket

charcoal gray

woolly

itchy

entrapment.

 

That’s how you caught me

that same kind of yarn

wound me up in seconds

before I could feel it

and took me along for the ride

that lasts still,

even though I won.

 

 


 

 

An Open Letter To My Life 

By Joan Moeller

 

Dear Life,    

     I first want to apologize to you for failing to value the determined resolve with which you show up for me day after day, kindly and calmly there like a mother with your arms outstretched and your eyes dancing with love beckoning me.  I want you to know I do embrace you with as much passion and trust I dare conjure from the confines of this twisted body I call Mine.  I realize, sometimes with the scratch of pen and ink on bound lined papers, that often I am arrogantly ignoring you, defying you, escaping you; and not from some terrible betrayal I feel you’ve levied against me – but more from some pathetic fear to love you that has twisted the vine of your lush abandon and hope sent growing perpetually evergreen and sun-bound out into this strange world of ours.

     I also need to acknowledge to you that I have made some terrible mistakes in my nurturing of you, often hiding you behind and beneath the clambering draw of other lives and loves, other reasons and other realities who challenge you with their perceptions and their hollering accusations that I have not been vigilant enough for them, not loved you well enough, that I have failed you, that I have been selfish, have needed too much, have asked too much or too little with disregard for you, am wasting the glory and talent of you.

 And I am beginning to understand that Cancer has served to force attention and routine and vigilant care from me so that you could never be denied again, never be discarded, abused, ignored or abandoned again. 

    So I am writing to announce to you that I am so sorry I lost track of you, and to assure you that I am out looking for you now: daily praying and calling and searching the landscape as you play this fateful teasing hide and seek with me now, daring me to blind myself to these other lives that pull on us in every direction, challenging me to deny the cries of Cancer instead of your own cries for salvation and meaning, imploring me to find you and reclaim you as my own. Quiet in the night, intrepid in the morning, playfully drenching me in poetry and art and the science of you, promised and steadfast you keep drawing me soft if already exhausted out into the day; balancing me with responsibility for you and dependence on your happiness as you teach me how to hold on to you in the midst of this swirling passion for you.  I promise here to gently if fearlessly embrace you, and not drown you in the mysteries of our nature instead.

    And I want you to understand that your “quality” was never in question for me. This body torn and damaged still shudders with your breath, with every thought of the myriad of raindrops and windstrokes and heated sunrays from you that have blessed my face. The quality of you in this body heaves and sighs to ignore the rattling scrape of rib against rib, of muscle against bone, of nerve against sheathe, your breath sustaining me as I kneel before you My Life and pray for you to keep me close, keep me breathing, keep me going.

     So with this letter I humbly beg you not to leave me just yet.  Not just yet~

 

 


On Living With Cancer

By Jasan Zimmerman

 

“It was a pleasure to meet you.  You’re such an inspiration.”

“Wow, your story is incredible.  I wouldn’t have been able to go through that.”

“How do you do it?  I’m amazed.”

Obviously, these are meant to be compliments.  All they really do is make me uncomfortable.  To me, it’s just my life.  I put one foot in front of the other and move on.  If I gave up, I wouldn’t be here anymore, and that wouldn’t be any fun.  When I am faced with adversity, I fight.  I don’t know if it was a choice early on in my life, but that’s all I know.  It’s like regular people waking up and reading the newspaper, drinking coffee, eating Cheerios, and then going to work.  It’s what I do.  Survival is a no-brainer.

I can speak casually of my battles with cancer, but that doesn’t mean I’ve learned to live with harmoniously with it.  Its specter has hung over my head my whole life.  I’ve only been “cancer free” for six months, the first six months of my life.  Those probably don’t even really count because the tumor was almost certainly growing then, but it just hadn’t been found.  Of course I have no memory of those six carefree months.  I wish I did.

Cancer is an unwanted parasite in my life, a leech that has been attached to my back almost since birth that will never unhook itself.  I can’t stand it but I’ve accepted that I will never get rid of it.  It may one day decide to again gorge itself on my life force, and I’ll deal with the consequences.  Having no control over the life cycle of the leech makes it even more difficult to live with.     

It’s even worse when I hear stories about other people who didn’t win their battle with the leech.  I did a Make-A-Wish interview with a three-year-old girl named Ava who had recurrent neuroblastoma.  I wasn’t really sure that I could handle doing it, since it hit so close to home, even though my neuroblastoma never recurred.  I felt compelled, though, to volunteer to be part of the interview team.  I didn’t really put it together when her wish was listed as “rush.”  This apparently meant that her social worker and doctors didn’t think she had much time left.  She was a sweet, beautiful, caring little girl.  She drew a picture of a smiling face for me and the other interviewer.  One of the things that stuck with me was when she said, out of the blue, “Mommy, I love you.”  Her wish was to go to Disneyland.  She loved Winnie the Pooh, Mickey Mouse, and all of the Disney princesses.  We set up the interview in only four days, when it usually takes a couple of weeks.  The wish was approved in three days, instead of the normal four to six week time frame.  Within two weeks of the interview, Ava and her family went to Disneyland.  A week after they got home she passed away. 

About ten minutes after I read Ava’s obituary in the newspaper, I watched a television show about a little girl with neuroblastoma named Alex.  She wanted to raise money for pediatric cancer research, so she set up a lemonade stand.  It took off, exponentially.  She even made it onto the Oprah Winfrey show.  In just a few years her lemonade stands, stationed all over the country, raised over twenty million dollars.  There wasn’t a complete happy ending, however, because Alex also died.  Her lemonade stands live on though, still raising money for pediatric cancer research.

The day after I found out about Ava and watched the show about Alex’s lemonade stand, I was forwarded an email from a friend who works for CURE magazine with the subject line “Some sad news.”  It was an email with news of the death of Allan Goldberg, a cancer survivor and activist.  He was most recently the leader of First Descents, a non-profit that focuses on young adult cancer survivorship by organizing kayaking and whitewater rafting trips for young adult patients and survivors.  I met him last September at the CURE Patient and Survivor Forum in Chicago.  He gave a talk as part of the Young Adult track, and he was funny, down-to-earth, and very honest.  He didn’t gloss over any of the negative aspects of the disease.  He told it like it was.  I spoke with him very briefly after his talk, and he gave me a brochure for First Descents.  I quickly read it over and said, “I’m there.  Sign me up!” 

I was able to attend First Descents ten months after I met Allan, and the experience was one of the greatest of my life.  I was looking forward to seeing him again and thanking him for the opportunity.  Too bad it didn’t happen.

I get angry and frustrated when I hear about deaths such as these.  Many tears have been shed.  Sometimes I yell at the television or the computer or the newspaper.  Sometimes I write in my journal.  Sometimes I eat pizza.  Sometimes I just curl up on the couch and watch TiVo.   

I question why I’m still here and so many people are not.  Those two little girls hadn’t even started their lives yet.  Allan made great strides in bringing awareness to the plight of cancer survivors and made a difference in the lives of countless people, but I’m sure he had even bigger plans.  None of that mattered.  They were all still brought down by the undiscriminating leech that is cancer. 

I don’t understand why the disease is so unfair.  What is my place in the world as a cancer survivor?  I can go back to not thinking, writing, or talking about it, but what good would that do?  It will still always be in my mind:  sometimes in the back, sometimes conspicuously in the front, but always there.  I can take the opposite route, and continue to share my story and work to increase awareness and research and give hope to those fighting the dreaded disease.  I feel driven to keep up the fight, empowered by the people who have struggled before me and who will struggle long after I’m gone.  If I can help one person feel less isolated or believe that they can survive, then I’ll be happy.  

Cancer is, and always will be, a part of my life.  That doesn’t mean I have to like it.  I wish I wasn’t cast this lot in life, but it would be a waste if I didn’t try to make some good come from it. 

 



"Cancer in Our Words" features writing from The Writers' Group at Stanford Cancer Center in Palo Alto, CA, men and women who write together and share their stories of cancer and of life.  New selections will be posted on a monthly basis.  To learn more about the writing program at Stanford Cancer Center,"Words That Heal:  Writing Together Through Cancer," click here:  http://cancer.stanfordhospital.com/forPatients/services/supportiveCareServices/actWordsThatHeal

Each writer has given his or her permission for the work that appears on this site.  All rights revert to the authors.


(If you are inspired by the words of these writers, let us know by sending an email to Sharon.  If you want to write out of your own experience of cancer, then go to  www.writingthroughcancer.com for a month's collection of weekly writing prompts).


For an archive of earlier writing by the Stanford Center Cancer Writers, click here.






Sharon A. Bray, Ed.D., copyright 2011,  all rights reserved.
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