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…Do you note that the world has changed since you began

Your tatoo beneath my chest bone?  I would guess that, if

you do, you don’t care.

“Life is pretty simple,” you say, “and besides, I have my

work to do.”

 

(“To My Heart As I Go Along,” by Kenneth Koch, Poetry Magazine, 2000)

Wednesday is Valentine’s Day, and the retail world has reminded us of the date for weeks.  As a child, it was the anticipation of choosing a packet of 36 valentines to be addressed to my classmates and placed in the decorated cardboard box at the back of my classroom.  There was chocolate, of course, and those little decorated sugar candy hearts with messages stamped on them and, thanks to our mothers, a party with red and pink cupcakes.  We didn’t understand much beyond those exchanged valentines then, nor did we know much about anatomy and physiology when it came to our hearts.  The history of the symbolic significance of the heart was completely lost on us.  We didn’t know then that the heart, in religious texts, is a metaphor or attributed with the spiritual or divine, or that early philosophers and scientists believed the heart to be the seat of thought, reason or emotion.  Despite today’s scientific and medical knowledge, the heart continues to symbolize what we humans feel.

Take a look at http://www.poets.org, the website for the Academy of American Poets, enter “heart” in the advanced search, and you’ll get 734+ poems about the heart, whether filled with the joy of love or ache from love lost.  If you Google “heartache,” you’ll find a reference to the top 100 heartache songs,   like “Unbreak my Heart,” “How do You Mend a Broken Heart”, “Heartbreak Hotel”, “Total Eclipse of the Heart”, or “Don’t Go Breaking My Heart,” all confirming the heart is where we feel not only love, but our pain, whether  love gone awry or sorrow for others in our lives.  In fact, the definition for “heartache” is “anguish of mind,” or “sorrow.”

It turns out that a broken heart is more than imagined and more than emotion.  In a June 5, 2010 post on his former blog, All Heart Matters, journalist and heart patient, James Borton, cited a number of research articles on “Broken Heart Syndrome,” a left ventricular dysfunction brought on by acute emotional or physical stress.  “Hearts actually can break,” he wrote, quoting an article in a recent edition of The Wall Street Journal, suggesting there is some emotional connection to our hearts.

Our hearts can break; they also ache.  As she thought about the death of a friend, the constant onslaught of bad news in the world, and challenges being faced by others in her life:  cancer, a brain tumor,  life and health challenges, former Kansas poet laureate, Caryn Mirriam Goldberg wrote,  “When I still myself and just feel what there is to feel, my heart hurts…” (Blog post, February 9, 2011).  One of Caryn’s poems came to mind, written after breast cancer and a double mastectomy, begins with the words:

I am still a woman

even if my heart hurts–

my whole chest aches with emptiness…

(“Reading the Body,” in Reading the Body, Mammoth Publications)

The heart–it knows love, and it knows heartache and so much more.  Our hearts.  The amazing organ pumping life-giving blood throughout our bodies.  I’ve certainly suffered from periods heartache and loss as many of you have, but I hadn’t thought about my physical heart much until a December afternoon in 2008, when I collapsed while walking my dog and ended up in the emergency room a short time later, dazed and confused.  It turned out I was experiencing a very different spin on “heartache.”  A day or two later, my family doctor appeared at my bedside.  “We think you’ve had a heart attack,” she said.  WHAT?  How could that be? I asked.  I’d just had an annual physical two weeks earlier.  She shook her head; she had no answers for me, saying “we don’t really know; it could be any number of things…”  My doctor held my hand as I wept, and told me nothing had been confirmed; a cardiologist was reviewing the battery of tests I’d had when I arrived and would shortly confirm or deny the diagnosis.  Two days later, I had officially become  a heart failure patient, with left ventricular dysfunction and atrial arrhythmia, and I had an ICD (implanted cardiac device) implanted, leaving a rounded lump on the left side of my chest, a constant reminder of how suddenly my life changed.

“It’s always something… “I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next.

(It’s Always Something, by Gilda Radner, 1989)

After the shock and heightened fears of mortality settled down, I continued to read and research, looking for answers.  It wasn’t until five years later, when I stumbled on a 2013 study in the New England Journal of Medicine that found exposure of the heart to radiation during radiation therapy could increase the risk of heart disease among breast cancer patients later in life, particularly in women who were irradiated for cancer of the left breast.  I’d been treated aggressively for DCIS (ductal carcinoma in situ) in my left breast in 2000, and seven weeks of daily radiation therapy was a significant part of the prescribed treatment.  Eighteen years later, DCIS is treated somewhat differently; radiation doses have also been reduced and become more precise. Yet I wondered if the radiation I’d received was a possible explanation for why I now suffered from heart failure.

Ironically, it was only late in December 2017 that my new cardiologist raised and discussed the likely probability with me.  Her candor and knowledge of the research was gratifying; I felt as if I was getting some confirmation of all I had come to suspect.  Then, several weeks later, on February 1st, NBC evening news reported that the American Heart Association had just issued a warning about potential harmful effects of certain breast cancer treatments–including radiation.

“Any patient who is going to undergo breast cancer treatment…should be aware of the potential effects of the treatments on their heart,” Dr. Laxmi Mehta stated, director of the Women’s Cardiovascular Health Program at Ohio State University.  “This should not deter or scare patients from …treatment, but should allow them to make informed decisions with their doctor on the best cancer treatment for them.”

...allow them to make informed decisions with their doctor...” And there you have it, the importance of asking questions about treatment.   I wish I’d known and asked more questions eighteen years ago, but I didn’t.  The word “cancer” had paralyzed me–I operated in a fog for weeks after the diagnosis and numbly accepted the treatment regimen as “normal.”  Now I live with heart failure, and I am very aware that more older women die of heart disease than of breast cancer.  Thankfully, medicine and treatments continue to advance for both cancer and for heart disease treatments.  And for the continuing research, development, and new treatment available to any of us, whether cancer, heart disease, or other life-threatening illnesses, I am forever grateful.

Gratitude is, as it turns out, what Valentine’s Day has come to symbolize for me–not just for my loved ones and dear friends, but for all those healthcare professionals who have made a difference in my life–the gifted neurosurgeon who saved my life as a teenager, caring family physicians who showed compassion and concern in times of illness or crisis, my cardiologist, who literally breathes life into the examination room when she enters and discusses my condition in clear, direct terms.  Medicine is science, yes, but there’s art in the way in which it’s administered by those men and women who become our physicians and surgeons.

And Wednesday is Valentine’s Day, but I’m well beyond scribbling out “To Jane, From Sharon” on the paper envelopes into which those little dime store valentines were stuffed.  The excitement of exchanging valentines as we did as children disappeared a long time ago, but Valentine’s Day is an opportunity to celebrate with my husband the years of marriage, family and companionship over a dinner out.  We’ll toast together the ever-present matters of our hearts–gratitude for the romance, family, friendship, and life we have.   Happy Valentine’s Day!.

Carefully placed upon the future

it tips from the breeze and skims away,

frail thing of words, this valentine,

so far to sail.  And if you find it

caught in the reeds, its message blurred,

the thought that you are holding it

a moment is enough for me.

(“This Paper Boat,” by Ted Kooser, in Valentines, 2008)

Writing Suggestions:

Expressions of sentiment, captured in small verses or lace-trimmed cards, in letters or postcards, are a way to say “I appreciate you” or “I’m thinking of you,” or “I love you.”  1.  Write a valentine.  In a world full of suffering, war and economic downturns, taking the time to express your sentiments for family, friends, or others whose presence in your life you appreciate is a great gift.  In fact, you can do it anytime.  You don’t have to wait for February 14th!  The simple act of pausing to remember those we care about and those who have cared for us in times of struggle, hardship or illness, reminds us of what matters most in our lives:  people, friendship, love.

  • Write a valentine.  In a world full of suffering, war and economic downturns, taking the time to express your sentiments for family, friends, or others whose presence in your life you appreciate is a great gift.  In fact, you can do it anytime.  You don’t have to wait for February 14th!  The simple act of pausing to remember those we care about and those who have cared for us in times of struggle, hardship or illness, reminds us of what matters most in our lives:  people, friendship, love.
  • Perhaps there’s a poem, song or ode to your heart or some other body part you’d like to write. Why not try, whether serious or humorous, to send a valentine to some part of your body that does all the physical work of keeping you going?
  • “I carry your heart/ I carry it in my heart,” e.e. cummings wrote in his famous love poem. What do you carry in your heart?

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I’ve been thinking about how, in the weeks of our Toronto winter, my mood, dampened by a bad case of bronchitis and nearly three weeks of coughing, doctor’s visits and antibiotics, my writing has mirrored my mood, floundering along with my physical discomfort, state, repetitive themes and forced prose that seems leaden and glum, just as surely as the coughing and overcast skies I’ve suffered through for days on end.  Not only was I bored, whatever I managed to put on the page was uninspired and dull.  Did I need some new life crisis in my life ignite my daily writing practice?  Somehow, that didn’t seem like anything I needed or wanted, lackluster writing or not.

Nevertheless, writing out of crisis, pain or suffering, has provided the inspiration for many works of great literature.  Novelists and poets alike have described their writing as a form of therapy, helping them heal from traumatic events in their lives in face, and  Louise DeSalvo states in her book, Writing as a Way of Healing, those traumatic events have inspired many of our greatest cultural creations.  Writer Paul Theroux once described writing like digging a deep hole and not knowing what you will find.  He admitted to feeling a sense of initial shock when reading authors like F. Scott Fitzgerald, Graham Greene or William Styron, discovering powerful—and personal—themes of alienation or suffering in their work.  Fitzgerald described his battle with alcohol in The Crack-Up, Greene wrote of his manic-depression in A Sort of Life, and Styron examined his suicidal depression in Darkness Visible. Creativity, as so many writers have shown us, not infrequently is fueled by life crises, trauma or suffering.  Search for on Amazon’s book listings, and you’ll find dozens and dozens of books written out of personal suffering, illness, loss or other trauma.

Cancer is one of those personal crises that triggers intense and abundant writing and has, for many authors, resulted in books of poetry or memoir.  Writing Out the Storm, the title of Barbara Abercrombie’s memoir of her breast cancer experience,  is a great metaphor for writing out of a personal crisis.   A cancer diagnosis–or many other traumatic life experiences, can make you feel as if you’re in the midst of a storm.  You rage; you weep; you pour your emotions onto the page.  Writing becomes the calm, the eye of a hurricane, a kind of refuge while the storm continues to howl around you.  You may write desperately and furiously, revealing all your anguish on the pages of your notebooks.  The refuge I found in writing during an extended period of personal crisis and loss, and the solace I discovered in it ultimately led me to leading my first workshop for cancer survivors nearly 18 years ago.

Yet the cancer journey changes, just as the weather and seasons across the country.  As you move from the shock and pain of diagnosis, surgeries and chemotherapy toward recovery, winter–although it may not feel like it now–makes its retreat, and Spring arrives.  Your spirits are buoyed by  the promise of calmer and sunnier days emerging from the wreckage left by wild weather.  The first crocus poking through the last of the snow and the buds appearing on the trees, ignite a new sense of hope.  But what happens to your writing as the storm passes and life becomes more bearable?  Does your writing change, or do you stop writing?  Are you predominantly a “crisis writer,” preferring the intensity of a life crisis to fuel your writing or do you discover new inspiration as the sky clears and nature begins to blossom?

For a long time in the aftermath of my loss and grief, I was a crisis writer.  But gradually, I realized I’d begun to ruminate, replaying old questions and sorrow over and over on the pages of my notebook.  Instead of feeling better, I felt worse.  I was mired in the blues.  The monotony of my constant replays on the page weren’t helping me get on with life or writing.  While it’s true that to write, you must be willing to step into your shadows and confront your own darkness, but to remain there defeats the healing benefits writing can have.  It’s why, in my cancer writing workshops, the prompts and exercises I offer to the groups gradually move from the predominant theme of cancer to a person’s whole life.  Cancer isn’t anyone’s complete life story–only a part of it.

A few years ago, I was stuck in a winter’s funk–erroneously called “writer’s block,” something I have since banned from my vocabulary.  Billy Collins, former poet laureate of the U.S. and a favorite of mine, was speaking at a local university; I was determined to hear him speak.  I was glad I did.  Collins’ poetry and wry humor were good medicine for my sagging spirits.  After the reading, he took a few questions from the audience, and one person asked where he found his inspiration.  His answer was brief and to the point.  Collins replied that he finds his inspiration in noticing, by looking out the window.  Read his poetry, and you’ll quickly discover that even the most ordinary thing can contain the seed of a poem or a story.

The following morning, still inspired by Collins’ reading, I opened my notebook, gazed out the windows in our front room and began with a first sentence, “I wish I could write a poem like Billy Collins…”  It was enough.  The words began flowing freely, something to do with being present and paying attention I realized.  I thought of Naomi Shihab Nye’s delightful poem, “Valentine for Ernest Mann,” inspired by a request from a young man to write him a poem and send it to him.  “You can’t order a poem like you order a taco,” Nye began, ” Walk up to the counter, say, “I’ll take two…”  She continued:

…I’ll tell a secret instead:

poems hide. In the bottoms of our shoes,

they are sleeping. They are the shadows

drifting across our ceilings the moment 

before we wake up. What we have to do

is live in a way that lets us find them.

(In:  Red Suitcase, 1994).

What we have to do is live in a way that lets us find them.  In Rita Dove’s wonderful poem, “Dawn Revisited,” she offers an invitation to awaken ourselves to the world around us to inspire the way we live and express our lives.

Imagine you wake up 

with a second chance: The blue jay 

hawks his pretty wares 

and the oak still stands, spreading 

glorious shade. If you don’t look back, 

 

the future never happens. 

How good to rise in sunlight…

The whole sky is yours 

 

to write on, blown open 

to a blank page…

 (In:  On the Bus With Rosa Parks, 1999)


The whole sky is yours to write on, blown open to a blank page…  It’s a great image, and it reminds us that the real work of writing is to write under any sky, whether stormy or clear.  It’s is how we capture the intricacy, the poetry, and stories our lives encompass.  It’s the work for every writer—and, perhaps, for healing: to move beyond the crisis, storms, and see the world with new eyes, to awaken, notice and explore.  Perhaps you’ve been writing out of the storm called cancer, but ask yourself this:  as the sky clears, where will you find the inspiration and the motivation to keep writing?

 

Writing Suggestions:

  • Why not take a look out the window or go outside? Open your eyes and notice how alive the world is with new possibility.
  • Begin with a blank page and write about the sky above you, whether it’s stormy or sunny, gray or blue.
  • Start with the first thing that grabs your attention as you look out the window. Start with a single line, pay attention to what you notice and describe it. Then keep writing for 20 minutes and see where it takes you.
  • Write out of storm, or write about calm.  It doesn’t matter.  The whole sky is yours, the blank page is yours, a space for whatever you want to write. What matters most, is that you write.

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There is a country to cross you will
find in the corner of your eye, in
the quick slip of your foot–air far
down, a snap that might have caught.
And maybe for you, for me, a high, passing
voice that finds its way by being
afraid.

(William Stafford,  “For My Young Friends Who are Afraid”)

Fear.  We all feel it; it’s both the body and the mind’s reaction to a perceived threat.  Fear is the emotion that kick starts the body’s metabolism, useful in times of real fear, but, as the research suggests, not as useful to us when fear becomes our way of life.  Not only does prolonged fear have the potential to suppress our immune system, but it hinders our ability to be fully present to the here and now of our lives.

What are you afraid of?   In the poem, “Fear,” Carson Ciaran illustrates the sometimes irrational aspect of fear:

…I fear the gap between the platform and the train

I fear the onset of a murderous campaign…

 

I fear books will not survive the acid rain

I fear the ruler and the blackboard and the cane…

 

I fear the gremlins that have colonized my brain…

What else do I fear?  Let me begin again.

 

(From Selected Poems, 2001)

Fear inhabits all of our minds at different times in a person’s life I’ve battled fear and anxiety more than once in mine, whether fear of jumping in the deep in of the pool as a child learning to swim, laying awake listening to my infant child’s cough as a young mother, fearing sudden mortality when I was first diagnosed with heart failure several years ago.  And in a world where so many people suffer from war and violence, fear is a constant companion.

Fear is also something ignited by serious illness, and more than many diseases, cancer ignites fear.  Quoted  The Boston Globe in 2008, Dr. Donna Greenberg, director of psychiatric oncology at Massachusetts General Hospital said, “The word cancer still carries with it the specter of death and suffering.  It’s like a monster coming into your house.”  A cancer diagnosis sparks anxieties and turns them into flame.  “The glass may be 99 percent full,” Dr. Ann Partridge, cancer specialist at Dana-Farber, remarked, “but they [patients] grab onto the 1 per cent risk.”

Having cancer affects your emotional health, according to the American Cancer Society.  A cancer diagnosis often has a huge impact on patients, families, and even caregivers. Feelings of depression, anxiety, and fear are common and normal.  The fear that cancer might progress or recur is one of the most common and devastating concerns of those living with cancer.  You live with the concerns of mortality–a life shortened by a cancer diagnosis.  In his well-known poem, “Fear,” Raymond Carver, poet and short story writer, who died of lung cancer at age 50, expresses the mix of irrational and real fear that can inhabit the mind.  Notice how the tension increases as the poem moves to its final lines.

Fear of seeing a police car pull into the drive.
Fear of falling asleep at night.
Fear of not falling asleep.
Fear of the past rising up.
Fear of the present taking flight.
Fear of the telephone that rings in the dead of night.
Fear of electrical storms.
Fear of the cleaning woman who has a spot on her cheek!
Fear of dogs I’ve been told won’t bite.
Fear of anxiety!
Fear of having to identify the body of a dead friend.
Fear of running out of money.
Fear of having too much, though people will not believe this.
Fear of psychological profiles.
Fear of being late and fear of arriving before anyone else.
Fear of my children’s handwriting on envelopes.
Fear they’ll die before I do, and I’ll feel guilty.
Fear of having to live with my mother in her old age, and mine.
Fear of confusion.
Fear this day will end on an unhappy note.
Fear of waking up to find you gone.
Fear of not loving and fear of not loving enough.
Fear that what I love will prove lethal to those I love.
Fear of death.
Fear of living too long.
Fear of death.
I’ve said that.

(From:  All of Us, 2000)

Fear can linger too, even after treatment is completed and recovery begins.   “The Routine Fear for Cancer Patients,” an earlier article from The Philadelphia Inquirer, refers to “scan anxiety,” the psychic distress engendered by tests.  “In the back of your mind,” colon cancer survivor, Judith Rothman states, “it’s always there that the other shoe is going to drop, and that becomes more active in the days before that CAT scan until I hear what happened…I always think the worst.”

Fear.  We all feel it; it’s  the body and the mind’s reaction to a perceived threat.  It’s the emotion that kick starts the body’s metabolism, useful in times of real fear, but, as the research suggests, not as useful  when fear dominates our daily life.  Not only does prolonged fear have the potential to suppress your immune system, but it hinders your ability to be present to the here and now of your life.

How do you learn to live with the fear that cancer induces?  How do you name it and yet, let it go, accepting what you cannot control?

In “I Give You Back,” poet Joy Harjo describes releasing her fear:

Oh, you have choked me, but I gave you the leash.
You have gutted me but I gave you the knife.
You have devoured me, but I laid myself across the fire.

I take myself back, fear.
You are not my shadow any longer.
I won’t hold you in my hands.
You can’t live in my eyes, my ears, my voice
my belly, or in my heart my heart
my heart my heart.

But come here, fear
I am alive and you are so afraid
of dying.

(From:  She Had Some Horses, 1983)

Fear is something we all live with, some of us, perhaps, more willing to admit it than others at times, but the challenge for anyone is to not let it prevent us from truly living.  As William Stafford reminds us,

What you fear
will not go away: it will take you into
yourself and bless you and keep you.
That’s the world, and we all live there

(In:   The Way It Is:  New & Selected Poems, 1999)

Writing Suggestions:

  • What do you fear? Try making a list in the style of Carver’s list poem.  Don’t stop to judge.  When you finish, read it over.  Highlight the fears that are most “real” for you.  Choose one or more and explore the fear.  Set the timer for 20 minutes and writing without stopping.
  • Look fear in the face this week. Create a character named “Fear.”  Talk back to it as Harjo did.
  • How or when does fear visit you?  What do you do to manage your fears?
  • Write about a time when you were truly fearful. What was the event?  What happened?  What did you do?  Write the story of the experience.

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In the first session of my writing groups, members introduce themselves by name and if they wish, the kind of cancer they are living with.  In every group, some happily declare their treatment is behind them.  They are “in remission” or “cancer-free”–words everyone longs to be able to say as their treatment regimens conclude.  “In remission” signals a reprieve from the relentless routine of doctor’s appointments, scans, tests, surgeries and weeks, even months of treatment.  It declares one’s return to a so-called “normal” life, yet more often than not, “normal” does not have the same meaning it did before cancer.  Treatment provided structure, routine, and defined the days before them.  Now “in remission” is also readjustment.  Returning to life as it was before cancer is not easy–it may not even be possible.

“In remission.”  You‘re one of the lucky ones.  Cancer not only alters our bodies, it changes the way we experience the world.  Despite the wish you may have to do so, you realize it’s nearly impossible to return to your former life–you’re not the person you were before cancer.  You experience life differently than before.

Your treatment has been successful, at least for now, but you live with the knowledge that as a survivor, you may not be guaranteed a permanent state of grace.  You may have many years left to live; perhaps less.  One thing is certain: you never take anything for granted.

I will never be the same

knowing how effortlessly death

rests in the cells of my body,

yet with each step I am willing

to say yes to the chances I take,

to the hope no one can take from me

here in the midst of my recovery…

(“Hiking in the Anza-Borrego Desert After Surgery,” by Francine Sterle, in The Cancer Poetry Project, V. 1, 2001)

There’s something else.  You may even feel a little guilty, especially when, in your cancer support groups, you know many whose prognoses are less favorable and who may well lose their lives to cancer.  You’re relieved, yes, but it can seem unfair.  Why have you survived while others may not?

You may question your life, how you can make it matter, live in a way that “makes a difference.” And yet, what about learning, or re-learning, what it means to live in the present, to cultivate gratitude, to even give yourself time and space to re-discover the simple pleasures of living?

“I’ve gone from thinking, ‘Why me?’ to thinking, ‘Why not me,” a former writing group member said.  “In the beginning, it was comforting to think of fighting to survive…   I believe that I should have a powerful drive to accomplish something…a goal for which I need to continue to survive.  But,” she confessed “I don’t find that drive in me.”

Her words resonated with me.  I recalled the self who was so goal-driven before cancer, eyes always on what lay ahead, stressed and always racing from one thing to the next. Cancer was my “whack” on the side of my head.  I became aware of how I had been missing out on the joy of the present—the ordinary moments that are so much of what living is about.  If I was to learn anything from my experience, it was about slowing down and learning to be present in ways I’d all but forgotten how to do.  It was about learning to live again, but differently.

What is living about for those lucky enough to be “in remission?”  N., a former group member wrote, “I love the things I do day by day.  I hike with one beloved friend.  I spend time in the wonderful garden of another.  I meet others for coffee and conversation. I meet these friends with pleasure and leave them with a joy and benefit to my mind and spirit…”

Like so many of us, N. rediscovered comfort and meaning in the ebb and flow of everyday life, small pleasures of love, companionship or nature.  “It frees me from having to make every moment count,” she wrote.  “It takes off pressure that would exist if I had to accomplish something in particular before I die…”

This is a spring he never thought to see.

Lean dusky Alaskan geese nibbling grass

seed in his field, early daffodils, three

fawns moving across his lawn in the last

of afternoon light…

He smells the hyacinth

and can feel hope with the terrible crack

of a thawing river loosen in his heart…

(“In Remission,” by Floyd Skloot, in The Cancer Poetry Project, V. 1, 2001)

I recall the wisdom of so many of the writing group members more than a few times each year, because, despite my resolve, it’s much too easy to slip into old habits of being, putting my daily life on fast forward or being consumed by a list of daily “to dos.”  It’s easy to forget the real task of being alive is to be present, pay attention, and re-discover the gratitude for my everyday life.

A., a member of one of my former writing groups for several years who subsequently died from rare form of leukemia in 2012, chose to spend her final years in the quiet beauty of the California redwoods, living and working in a small cabin in the Santa Cruz mountains, a source of inspiration and peace for her. She inspired in all who knew her a reverence for life, the beauty she saw in and expressed in how she experienced the  ordinary ebb and flow of each day.  Her poetry and words linger in my mind, luminous and alive.   In her poem, “Directive,” she reminds us how abundant the gifts of what we consider the ordinary are, of the joys found in those small moments of daily life.

Remember the commonplace, the wooden chair on the white planked deck,
trees kneeling in the rain and deer prints
leading into elegant rushes. A kinder place
cannot be found: where you sit at the top
of shadowy stairs, the window lifted…

Let me speak for you: there’s comfort
to be found in fatigue, in letting principles
fall like stones from your pockets…

Fall into the ordinary,
the rushes, the deer looking up into your heart,
risen, full in the silver hammered sky.

(From “Directive,” by A.E., 2010, personal communication)

Writing Suggestions:

  • “In Remission.”  Explore the term, what it means–or meant–to you.  What were the lessons of cancer?  Did you live your daily life differently than before cancer?
  • “Remember the commonplace…”  Re-read the excerpt of A.’s poem.  What in the ordinary aspects of daily life have you come to appreciate?
  • Practice gratitude.   Take notice; find gratitude for the simple joys of living.   Choose one small moment from any day, whether from nature, loved ones, your daily routine—a simple pleasure that sustains, inspires or offers you joy.  Describe it in as much detail as you can; perhaps you’ll find a poem or a story lurking there.

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Life changes fast. Life changes in an instant. You sit down to dinner and life as you know it ends.” —  Joan Didion, in The Year of Magical Thinking, 2005

In two days, I’m beginning a new “Writing Through Cancer” workshop series at Gilda’s Club here in Toronto, the expressive writing program I’ve been leading for over 17 years.  As often as I’ve led these groups, one would think that I’d have it down pat now, you know, like an dancer who knows every step of a dance by heart, or the actor, on stage as the lead character in a play that’s run on Broadway for years.  The choreography is as natural as walking; the lines of the play as fluid as a conversation with a friend.  In some ways, yes, the flow of the sessions are as familiar to me as old friends, but always, despite the emotions and stages common to the cancer experience, every single workshop series is different, the product of the mix of participants and their uniqueness as individuals and as a group.

It’s no surprise that I spent the better part of yesterday thinking about the session, wondering what the mix of participants will be, how I’ll introduce the workshop to them, and how I’ll frame the first writing prompt.  Where does one begin?  In my writing groups, it’s most often in those moments before the realization that their lives had changed, the instant they embarked on the cancer journey.  It’s the moment when, as Barbara Abercrombie describes in Writing Out the Storm (2002), “something happens, and then the world spins on a new axis.”

He opens the door

                and walks in,

his face and white coat

stiff with starch,

 

holds my hand, and

he says,

“I’m afraid.

 

I am afraid

you have cancer…”

(From: “Diagnosis,” by Majid Mohiuddin, in The Cancer Poetry Project, v. 1, 2001)

“You have cancer.”  The words sound like a cosmic bad joke or a death sentence.  Sometimes, like in the moment my father was told he had Stage 4 lung cancer, it is one.  Emotions rush in, competing for attention:  disbelief, sorrow, anger, fear, guilt.  You rail against the diagnosis in one moment and break down in tears the next.  You’re in the middle of a personal disaster.  Why is this happening?  What can I expect?  Will I die?

It’s those vivid memories and emotions that are important to describe in writing for healing.  To be healing, it doesn’t mean you write  in generalities about a traumatic or stressful event. Healing writing has particular characteristics, as psychologist James Pennebaker and his colleagues noted in their substantive research on writing’s health benefits.  Healing writing is concrete, vivid, and contains detailed descriptions of trauma, distress and emotion.

Whenever I ask people in our beginning session to recall the moment they first heard the word, “cancer,” no one ever responds with generalities.  Even if it’s several months or more since they were first diagnosed, the memory is vivid; emotions rise to the surface as they write and when they share what they’ve written.   The remembrance of that single moment evokes strong feelings among everyone as they each describe what it was like to be told, “you have cancer.”

Those words “you have cancer,” are ones you hear for the first time and yet, for the physician, these are words delivered to a patient many times over one’s medical career.  What goes through a physician’s mind in the moment before a patient is given the diagnosis?   Jennifer Frank, MD, describes the moment before she delivers a cancer diagnosis to a patient:

I want to be straightforward but not blunt.  I want to be compassionate but remain professional.  I slow myself down, remind myself that the words I’m about to say are ones that I’ve said before, many times, but that the words I’m about to say are also ones you’ve never heard before[underlining is mine]   (From:  “A Piece of My Mind,”  JAMA, March 7, 2012, v.307. no.9).

The words “you’ve never heard before…”  Writing in the New York Times in 2000, novelist Alice Hoffman described what it was like to hear those words when her doctor telephoned her with the results of her biopsy:

I was certain my doctor was phoning me to tell me the biopsy had come back negative…but then she said, “Alice, I’m so sorry.” …In a single moment the world as I knew it dropped away from me, leaving me on a far and distant planet, where…nothing made sense anymore. (From: “Sustained by Fiction While Facing Life’s Facts,” August 2000.)

This first moment, the moment life began to spin on a different axis, when nothing seems to make sense, is the beginning of each person’s stories of the cancer experience.  It’s an important one to begin with, because once described, it opens the door to all that begs to be written and expressed about living with cancer.  It’s an invitation to examine and make sense of, your stories of illness, but in doing so, we remember  these are also the stories of being human, of life, because cancer can happen to anyone, and, as Alice Hoffman wrote in her NYTimes article, it does not have to be your whole book, only a chapter.

It’s part of the reason I love leading these groups, why I am always inspired and humbled by the power and beauty of what the men and women write and share in the workshop sessions.  We remember; we cry; we laugh; we share our stories around the table and honor, together, what it means to be human.

Writing Suggestion:

  • Start at the beginning.  Whether cancer or any other unexpected or traumatic moment in your life, go back to the day, the setting, the people, the moment that your world began to spin on a different axis, the moment something happened that changed the world as you knew it.
  • You can begin with phrases like, “I remember…,” or “The day that ____ happened, I…”  It doesn’t matter.
  • Do try writing without pause.  What’s important is that you write freely, without your internal critic whispering in your ear.
  • Set the timer for 20 minutes and begin.  Keep the pen moving.
  • When time is up, read over what you’ve written, first simply writing the piece all the way through without stopping.  Then read it a second time, underlining phrases and words that stand out, “glow” from the page.
  • Now, write again for 20 minutes, but this time, begin with one of the phrases you’ve underlined.  Chances are the writing will intensify, become more specific and descriptive.

 

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You tell me to live each day

as if it were my last.  This is in the kitchen

where before coffee, I complain

of the day ahead–that obstacle race

of minutes and hours,

grocery stores and doctors…

 (“Imaginary Conversation” by Linda Pastan, in Insomnia, 2015)

Next week I’ll begin the first session of an eight week expressive writing group for people living with cancer, something I’ve been doing since 2001, but this one is new.  It’s the first time I’ve offered a workshop in Toronto, and as I’ve thought about the potential participants, I’ve been thinking about cancer, its terminology, and reading Canadian articles as well as poets and writers who are–or were–living with cancer.  One well-known author, Carol Shields, who wrote the Pulitzer Prize winning novel, The Stone Diaries (1993), died from breast cancer in 2003, five years after her diagnosis.  Three years earlier, she discussed what it was to live with cancer in a CBC radio interview.  “I don’t know the future,” she said.  “I can’t plan very finely for the future as I did once.  I can plan one month ahead.”

Shields’ candor got me thinking about what it means to “live” with cancer.  Years ago, when I first began my workshops, it was common to refer to those diagnosed and treated for cancer as a “survivor,” defined by the National Coalition for Cancer Survivorship (NCCS) as “anyone touched by cancer .”  At the time, I was embarrassed to refer to myself as a survivor; my diagnosis was very early stage and immensely treatable.  My groups were made up of individuals–“survivors”– whose cancer diagnoses were far more serious, even terminal.  Gradually, however, as more and more people were living longer after a cancer diagnosis, “survivor” was broadened to include for “living with cancer for the balance of one’s life.” Since a cancer cure has yet to be discovered, the broader definition makes sense.  Cancer may disappear in response to treatment, but it can also reappear, a possibility anyone who’s been diagnosed with cancer understands well.

More often now, the literature about cancer more often uses use the term “living with cancer” than “survivor” to describe those who have experienced the disease and its treatment.  With continuous research and work of dedicated oncologists, some cancers can be kept in abeyance for many years, becoming more like a chronic disease–one in which a person can cope for an unforeseen amount of time.  Their cancers are treatable, but ultimately, ones that will be the cause of death.  Yet thanks to advances in cancer treatment, more people are twice as likely today of living ten years or more after a cancer diagnosis than they were decades ago.

Yet a cancer cure remains out of reach. Although new treatments like immunotherapy give us hope, “cancer-free” more often mean “for now” vs. forever.  When a friend of mine recently called to say that, after a year of immunotherapy clinical trials, he was “cancer-free,” I celebrated the news with him.  Yet I was thinking of another, more precise, term for the eradication of the tumors in his liver:  “no evidence of disease at this time.”  His results were still a cause for celebration, but I remembered a line from a poem, “It Seems We Can Live with Cancer Now,” by Bonnie Maurer.  She describes a family of three women, all of whom have had cancer.  Even though they are “clear,” or in remission, the possibility of recurrence is never far from their minds:

During quiet conversation, when the lamp shorts out,

We will show no surprise, really…

What cancer is farming us?

(In:  The Cancer Poetry Project, (Vol.1, 2001)
“What cancer is farming us?”  Whether we call ourselves patients, survivors, recovered or in remission, we live with cancer.  Nearly 18 years ago, I recall how my oncologist pronounced me “cured,” after a regimen of lumpectomies, radiation and tamoxifen.  I admit that I didn’t want to consider the alternative, but the fear of recurrence is the question that many cancer survivors live with.  It’s the shadow lurking in the wings, the moments of anxiety in follow-up appointments or the  routine medical procedures—mammogram, colonoscopy, CT scan or MRI–that threaten to ignite fear of a recurrence.  I admit that just three weeks ago, when I was called back for an additional mammogram and ultrasound, I felt a little uneasy.  I hadn’t been called back since 2000, when a constellation of calcifications first appeared on the radiologist’s screen.  What if?  Thankfully the additional scans showed there was nothing of concern.

“Even though I’m being treated with the most cutting-edge medicine, my disease can’t be contained forever…there’s not a schedule or formula for when it will leap onto the next organ, or start to grow where it’s already ensconsed.  If a treatment works…it could work for weeks, months or years.”–Teva Harrison, In-Between Days:  A Memoir About Living with Cancer.

What it means to “live with cancer” is vividly captured in a combination of graphic cartoons and words in Teva Harrison’s memoir.  She lives with incurable and advanced metastatic breast cancer.  She describes her illness, her life, in honest and frank terms; the reader cannot help but be touched by her story.  Despite everything, she expresses gratitude for her medical team, because, as she says, “they are doing everything they can to turn it into a chronic illness…As science advances, she writes, “more will carry a stable, or managed, cancer to an unrelated end.”

Despite living each day with a terminal disease, Harrison has hope.  “Living with cancer requires hope,” she says.  “I have to balance the hope I need to get up every day with the pragmatism I need to deal with bad news.”  Her hopes, she tells her readers, arewrapped up in three month increments, which is when I have the scans that tell me I’m still stable.”

Every day I am seeking the sweet spot, the place where I can live my life more fully, forgetting, for a moment, that I’m always living with cancer.–Teva Harrison

I read her words thinking of Ann, a beloved group member who defied the odds for metastatic breast cancer, continued to live with smiles, energy, concern for others, and the determination to welcome her first grandchild into the world.  She lived fully, making every single day she had left count, and describing how, each morning she awakened, she’d utter with a joyful “thank you, God,” for another day of life.  She was there to witness her grandson’s birth, and for several days, shared the joy of her family’s newest member before she passed away.

Is that what it means to live with cancer?  We may live with the shadow, the possibility of a cancer recurrence, but we also live with hope. Hope that cures will be found; hope for our friends facing surgery, radiation or chemotherapy, hope that our lives will not be cut short; hope that we’ll live to see another day.   Hope is what keeps us going and what keeps us living for as long as we can.

 “As scientists listen for signals from alien worlds,
we tune our keen ears to stories of others who have lived
clear for twenty years.”

(Bonnie Maurer, “It Seems We Can Live with Cancer Now.”)

Writing Suggestions:

  • Explore what it means to you to be someone who is “living with cancer.” Describe the ups and downs of this reality.
  • If you had wisdom or advice to offer to the newly diagnosed, what would you say about how to live with cancer?
  • What has “living with cancer” taught you about your life?

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We don’t receive wisdom we must discover it for ourselves.― Marcel Proust

It’s become a ritual of sorts, a practice begun several years ago together with my writing buddies, one I dutifully begin as the old year nears its end and a new year beckons.  There are no lists of New Year’s resolutions constructed, ones that, however unintentionally, are abandoned within a month or two.  Rather it’s the choice of a single word, one that signifies what I hope and intend my new year to be, one that serves as a reminder of what I hope to achieve, and one that sits, framed, on my desk where daily, I am reminded to take the actions this word implies.

I was nudged into the annual process of finding my guiding word after a post-Christmas visit with a dear friend, who is recovering from several months of cancer treatment.  “I think this will be my year of healing,” she said.  Yes, I thought, healing is such a powerful word, one that holds so much meaning and implied action for anyone who’s experienced the months of surgeries and treatment for cancer.  I was inspired by her comment and after my husband and I returned home, I began thinking about what word I would choose to set the tone and define the actions I want to take as the New Year begins.

There’s something elegant and honest about finding a single, meaningful word, but the process of choosing it is not easy, no matter how many words have preceded this New Year’s selection.  I began, as I always do,  making lists of potential contenders, consulting the dictionary, my thesaurus, and words of wisdom from poets and philosophers–all in the hope something written or described might jump off the page and announce, “I’m it!  I’m your word!”  Of course, it never happens that way.  I reviewed my word choices of years past, hoping inspiration might be hidden among them.  Instead, I discovered I had a distinct tendency to choose words beginning with the prefix, “re,” such as “renew,” “revise” or “rewrite,” each suggesting a “do-over,” an intention named but failed from an earlier year.  I looked at my list-in-process for 2018.  Yep, I had a definite majority of “re” words written down.  I started a new list, obviously needing more effort to come up with something new.

The seeker embarks on a journey to find what he wants and discovers, along the way, what he needs. ―Wally Lamb, The Hour I First Believed 

I returned to last year’s “word,” a phrase of “step-by-step.”  I’d framed it together with an image of stepping stones in a pool of water.  It was a choice that became a mantra, because in 2017 we decided to move back to Toronto from San Diego, and at times, the entire process was nearly overwhelming.  My 2017 “step by step” helped me breathe, realizing that achieving our dream was a process of many steps. On June 29th, we boarded the plane, our belongings following later, and turned that dream into reality.  Yet there were many more steps to take before we were finally settled.  How, I wondered as I looked to 2018, could I equal last year’s choice of a guiding set of words?  My mind was sluggish and everything I tried seemed unoriginal.  Still, I wrote every morning, searching for that one shining word, one that would symbolize how I want to live and what I hopeto accomplish this new year.

A writer is not so much someone who has something to say as he is someone who has found a process that will bring about new things he would not have thought of if he had not started to say them. –William Stafford

Despite feeling I was coming up empty-handed, the beauty of the creative process is that one’s mind keeps working on a solution to the problem.  Three days ago, I put my notebook aside in disgust and walked to the kitchen to pour myself a second cup of coffee.  It was as I filled my cup that the word–my 2018 word–suddenly announced itself:  “discover.”  I raced back to my desk, opened the dictionary and checked the meaning:   “find unexpectedly or during a search,”  “become aware of,” “show interest in,” or “be the first to recognize potential” in something or someone.  I opened my notebook to a new page and began writing again, pen racing across the page, exploring all the ways in which “discover” could be the roadmap for a new year.

The real voyage of discovery consists not in seeking new landscapes, but in having new eyes.

Marcel Proust

I’ve referred to Proust’s quote  many times over the years, but it seemed particularly relevant to this year’s guiding word choice.  My husband and I have recently returned to a city we once called home many years ago, and while much of it feels familiar, there is a great deal that is new and different.  Toronto a vibrant city, filled with places, activities, culture and people to be discovered.  I have changed from the younger and more ambitious person I was when we first lived here, but that is no deterrent to discovery.   We are older, mostly retired, and the implications of the aging process signals a new chapter of life–one we can merely endure or choose to discover new adventures and possibilities.   We have joyfully embraced being physically closer to one daughter and a granddaughter who has now become a regular part of our daily lives.  We’re discovering new friends and old ones too.  While I will begin a new writing workshop at Gilda’s Club later this month here in Toronto,  in the process, I am discovering Canadian writers who have experienced cancer, learning more about the resources for cancer patients and survivors here in Toronto, and without a doubt, my workshops will be informed by the uniqueness of what I am discovering here, just as they have been with each new series, each new sponsoring institution in the past.  What I didn’t realize is that I’d already begun taking actions implied by my 2018 guiding word!  Discovery is happening, and it’s only January 1st.

I didn’t know I liked rain

whether it falls like a fine net or splatters against the glass my

   heart leaves me tangled up in a net or trapped inside a drop

   and takes off for uncharted countries I didn’t know I loved

   rain but why did I suddenly discover all these passions…

 

the train plunges on through the pitch-black night

I never knew I liked the night pitch-black

sparks fly from the engine

I didn’t know I loved sparks

I didn’t know I loved so many things and I had to wait until sixty

   to find it out sitting by the window on the Prague-Berlin train.

–Nazim Hikmet (From:  Selected Poetry by Nazim Hikmet, translation copyright 1986)

Writing Suggestion:

This week, why not try choosing one word that reflects your intentions or goals for this new year?

  • Begin by writing the word at the top of a blank page.
  • Set the timer for twenty minutes.
  • Continue writing, exploring its meaning, memories or images it evokes in you.
  • Once you have done that, write a paragraph stating your word, what it means to you and why you’ve chosen it for 2018.

I invite you to share your word choice by replying to this post or perhaps with a friend or family member.  You might even frame or post your word where you can see it on a daily basis to be reminded of what actions you want to take during 2018.

I hope you will enjoy the process and find it as meaningful as I have over the past few years.

My good wishes to all of you who read and follow this blog for a year of healing, love, peace and new discoveries.

Happy New Year, 2018!

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