Writing Through Cancer

I watched the comedy “50/50”  last night, a film about cancer and survival.  The protagonist, 27 year-old Adam, learns he has a rare spinal cancer and struggles to comes to terms with his diagnosis and while finding humor in unlikely places.  My husband and I shared some laughter as we watched, but the film didn’t let us forget about the fear, upheaval, damage or losses that cancer introduced into Adam’s life.

When Adam is told the pain in his back is the result of a rare and possibly fatal spinal cancer, his physician is portrayed as impersonal, brusque and to the point.  He points to Adam’s tumor in the illuminated images of his spine and delivers the news in a rat-a-tat-tat salvo of facts and medical terminology while Adam succumbs to shock and disbelief.  I thought about my experiences with physicians and surgeons at critical times in my life and the relationships we have with doctors during life-threatening illness.

Until recently, the topic of doctor and patient communication was traditionally the domain of physicians , often reflecting on medical school training.  But a growing number of patients have written about doctor-patient relationships, exploring who their doctors are, why they choose the ones they do, and the intricacy of the relationships they have with them.  Alice Trillin, educator and film producer, who died of lung cancer in 2001, reflected on doctors and patients in a March 1981 issue of the New England Journal of Medicine.

First of all, we believe in the magic of doctors and medicine.  The purpose of a talisman is to give us control over the things we are afraid of.  Doctors and patients are accomplices in staging a kind of drama in which we pretend that doctors have the power to keep us well.  

–“Of Dragons & Garden Peas:  A Cancer Patient Talks to Doctors”

As Trillin pointed out, our relationships with doctors are complex and often profound.  We’re asked, implicitly, to entrust our very lives with them. We get poked, prodded and examined by our doctors, but how often do we have the chance to examine them?  To ask ourselves, “What do I want in a doctor?”  In the wake of his diagnosis of metastasized prostate cancer, literary critic, Anatole Broyard, examined his relationship with his doctor:

Choosing a doctor is difficult because it is our first explicit confrontation of our illness…

The knowledge that you’re ill is one of the momentous experiences in life.  You expect that you’re going to go on forever, that you’re immortal…When the doctor told me I was ill it was like an immense electric shock.  I felt galvanized…and I was reduced to essence.  I began to look around me with new eyes, and the first thing I looked at was my doctor.

I had no reason to believe that he was not good.  He was in a good hospital…what turned me against him was what I saw as a lack of style or magic.  I realized I wanted my doctor to have magic as well as medical ability.  It was like having a “lucky” doctor.  (From: Intoxicated by My Illness and Other Writings of Life and Death).

Broyard asked, “Now that I know I have cancer of the prostate, the lymph nodes and part of my skeleton, what do I want in a doctor?”  He detailed several characteristic he would like to have in a physician; among them, he wished for someone who:

• understands that beneath my surface cheerfulness, I feel…panic,
• was a close reader of illness and a good critic of medicine,
• would be bonded with me for a brief space, survey my soul as well as my flesh to get at my   illness,
• knows that he is my patient too, and I have my diagnosis of him… 

Broyard gives us much to consider. When I read his book, I felt I’d been very lucky with several of  my doctors in those critical times—a gifted neurosurgeon, extraordinary family physician, a cardiologist—all who had the capacity to understand the person I am as well as the illnesses that ultimately forced me to put my life in their hands.  But I might have been less fortunate, just as the film “50/50” reminded me last night.

This week, why not examine your own doctor-patient relationship?  What  characteristics have been most important in your choice of a doctor in the past?  Which doctors made you feel “lucky,” as if they possessed that bit of magic?  Why?  What do you want in your doctor?

I awakened in pain this morning, the result of an incision made in my chest this past Friday, the second since 2008.  My surgery was relatively minor—a “pocket revision” for my ICD, an implantable cardioverter-defibrillator acquired after a terrifying and unexpected episode of heart failure. The device is programmed to detect  cardiac arrhythmia and correct it by delivering a jolt of electricity, something, fortunately, I’ve never experienced since its placement in my chest in 2008.  Nevertheless, I was more anxious than I admitted.  As I was escorted into the cardio-vascular unit at Scripps Memorial Hospital to prepare for the surgery, I experienced a wave of emotion.  My eyes teared up, and I remembered, all too vividly, the fear and disorientation I’d felt that December barely three years ago.

My anxiety was lessened, in part, by the presence of my husband, the warm and gentle manner of the nurses who managed the pre-op, and, as it turned out, some shared laughter.  Yes, laughter. Whether the result of nervousness or the simple fact that I like to laugh—a lot—it helped to alleviate my tension. I relaxed.  The procedure seemed less onerous and overwhelming.  Before I knew it, it was over, and I was wheeled into the recovery room.

Come to any of my writing groups for cancer patients and survivors, and you might be surprised how often you’ll hear laughter.  Of course, there are many other feelings expressed–sorrow, frustration, and anguish—all strong emotions that accompany the experience of cancer, but in every session, laughter invariably bubbles up as we write and share our stories with one another.  Everyone leaves the group feeling lighter, happier, and more able to cope with the demands of treatment and recovery.

Humor or laughter therapy is a complementary method used throughout history to reduce stress, promote health and help individuals cope with illness. During the 13^th century, humor was used to distract patients from surgical pain.  In 1928, Dr. James Walsh wrote Laughter and Health and observed that laughter appeared to reduce patients’ pain levels after surgery. In more recent times, the benefits of humor have been studied by the medical community and routinely incorporated in healthcare.

One of the most memorable accounts of the health benefits of laughter came from Norman Cousins, former editor of the Saturday Review, diagnosed with an illness called “ankylosing spondylitis,” a degenerative disease that causes the breakdown of collagen.  Cousins may be one of the most famous of patients who found benefit from laughter therapy.  Given up to die and nearly completely paralyzed, Cousins did something radical.  With his doctors’ blessings, he checked out of the hospital, moved to a hotel room, took massive doses of Vitamin C and began watching Marx Brothers movies, enjoying plenty of hearty belly laughs each day.  He discovered that after laughing for a couple of minutes, he experienced relief from pain.  His condition began to improve; he regained the use of his limbs and returned to his position at the Saturday Review.  He also served as Adjunct Professor of Medical Humanities for the School of Medicine at the University of California, Los Angeles.

“Is it possible,” Cousins wrote in his 1979 book, Anatomy of An Illness, “that love, hope, faith, laughter, confidence and the will to live have therapeutic value?”  All these are important factors in improving patients’ quality of life and in helping us cope with cancer and other debilitating illnesses. Medical research demonstrates that laughter is beneficial for those dealing with cancer, heart disease, and other debilitating illnesses.  It boosts levels of endorphins, the body’s natural painkillers and suppresses epinephrine, the stress hormone, which improves the activity of natural killer cells.

“A clown is like an aspirin,” Groucho Marx said, “only he works twice as fast.”  Remember Patch Adams, the physician who dressed as a clown to cheer up his patients? He believed in the importance of developing compassionate connections with his patients, and his approach to patient care relied on humor and play, which he saw as essential to physical and emotional health.

Humor won’t deny the reality of cancer or heart disease, but it can help us cope more effectively.  Think of Gilda Radner of Saturday Night Live, Michael Landon, former star of Bonanza, or Jennie Nash, who wrote The Victoria’s Secret Catalogue Never Stops Coming.  Each has been a model for the rest of us in demonstrating how the power of humor and laughter can boost the quality of our lives during any life-threatening illness.

As I heal from my surgery this week, I won’t be able to participate in the activities I enjoy most; those that make me laugh and smile.  Since that time I came face to face with my own mortality in 2008, I’ve made deliberate attempts, to have many opportunities to laugh during the work week.  I’ve been taking beginning drumming lessons for the djembe and cajon, where, as one of the oldest in the classes, I must laugh at myself routinely.  I always return home with a smile on my face.  In a joint effort to create more opportunities for laughter in our lives, my writing buddy and friend, Sue, and I have joined the growing numbers of aspiring ukulele players, intent on reviving our sixties folk song heritage and having a good giggle while we do it.

So come on.  Have a laugh this week. What makes you laugh out loud? A film?  A grandchild’s antics?  A memory of a humorous episode in your life, something that made you laugh so hard tears ran down your face?  My mind is already spitting out funny memories even as I write this prompt:   the time I fell into the orchestra pit in front of several dozen onlookers, or when, just weeks after neuro-surgery, my teenage heart throb twirled me under his arm at a school dance and brushed the wig from my bald head, or the look on a fellow recorder quintet member’s face as I rose to play a solo in front of an audience of two hundred, and my fingers began shaking so violently, that the notes from my recorder resembled nothing written by J. S. Bach.

Gee, I just noticed that my incision isn’t as painful as it was an hour ago; my mood has already improved just from thinking about those humorous disasters.   So go ahead, lighten your day.  Have a laugh; jest for the fun of it.  It’s good for you.

A dozen women, all living with cancer, were seated around the table with their notebooks open.  I had given them a short “warm-up” writing exercise, something I do at the beginning of a workshop.

“What’s on your mind this morning?  What thoughts or concerns have accompanied you to our group?” Write for five minutes; just keep the pen moving.  Don’t worry about what gets written.”  Notebooks were opened and within seconds, only the sound of pens, moving across the pages, could be heard. “Who wants to read first?” I asked.  One woman, her head covered with a brightly colored scarf, raised her hand.

“I’m angry about losing my hair,” she said as she began to read what she’d written.  “My hair has been my signature, long and full…”  She looked up from her notebook and reached for a tissue.  Her eyes were red and teary.  Several of the women nodded sympathetically.  Two of them also wore headscarves or wigs, two others had removed theirs in favor of short, newly grown heads of hair, grateful chemotherapy was behind them.  I recalled my own embarrassment when twice, as a teenager, I sported a bald head after neurosurgery, covering it with scarves when I returned to school and praying no one would laugh at me.  I felt unattractive and vulnerable to taunts or teasing, all from losing my hair.

Hair loss is one of the unfortunate side effects of chemotherapy that the majority of cancer patients experience.  While some of the newer, more targeted chemotherapy drugs don’t result in hair loss, the majority do.   Thankfully, the loss is temporary, and there’s solace in knowing that the drugs are helping you fight your illness, hair loss can have a powerful effect on our emotions.

Hair, whether male or female, losing it or not, affects the vast majority of us.    Consider how much time and money is spent in support of your hair, whether cut, colored, shampooed or styled, or waxed, tweezed and shaved.  Remember the rock musical “Hair?”  The styles of the sixties?  Long, full, permed, and wild, our hair was evidence of youthful freedom and rebellion.

Gimme’ a head with hair
Long beautiful hair
Shining, gleaming,
Streaming, flaxen, waxen

(Lyrics from Hair, Hair: The American Tribal Love-Rock Musical, by James Rado & Gerome Ragni)

Hair and hair styles are a distinctive feature of history.  Think of the powdered wigs from Mozart’s day, or the fashionable pony tails the men of Jefferson’s era wore.  Our stories of hair existed long before that sixties musical.  Remember the biblical story of Samson?  His power lay in his hair, giving him the strength to rip apart a lion or destroy temples with his bare hands.  He vowed never to never to have it cut.   His downfall came, of course, when he fell in love with Delilah.  Her powers of seduction gradually wore him down, and he revealed his secret:  if a razor were used on his head, he would lose his strength.  Delilah waited until Samson slept and ordered the servants to cut his hair.  When he awakened, his magnificent locks were gone, and with them, his strength, and he could no longer resist his captors.

Hair loss, whether the result of chemotherapy or genetic inheritance, affects men and women alike.  My husband’s hair has been thinning for years, and for a long time, he obsessed over his widening bald spot, yet resisting Rogaine treatments or comb-overs.  More than once, however, he returned from his hairdresser with a “new look,” an effort to mask the relentless disappearance of his hair.  Those attempts didn’t last—the fits of laughter induced by his new “do” from our daughters and me were enough to send him back to the barber for a less “hip” cut.  Thankfully, the bare head has become fashionable for men, and he’s embraced his shorn head with relief.

Gregory Corso, a Beat poet in the era of Jack Kerouac and Allen Ginsberg, creates a kaleidoscope of images about how we treat and worry about our hair in his poem, simply entitled, “Hair.”

Come back, hair, come back!
I want to grow sideburns!
I want to wash you, comb you, sun you, love you!
As I ran from you wild before —
I thought surely this nineteen hundred and fifty nine of now
that I need no longer bite my fingernails
but have handsome gray hair
to show how profoundly nervous I am.

(From Minefield:  New and Selected Poems)

The young woman from my writing group who mourned the loss of her hair that one morning has since recovered from her treatments.  Her hair has grown back, long and full.  She’s grateful, not just for her hair, but for enjoying a life without cancer.  In thinking about her, I remember a beautiful poem, “Farewell to Hair,”  by Terradon.  She watches as her hair floats away in the breeze, but she finds solace—even gratitude—as she imagines how it might comfort other living creatures:

I stood outside on a windy day,
and ran my fingers through my hair.
Long strands of silky threads,
blew across the lawn…

Now on the wintry nights,
when my head is cold,
I pull my wool cap over my ears and smile.
As I dream of baby birds,
sleeping in my hair.

(In The Cancer Poetry Project, Karin Miller, Ed.)

Hair.  It’s a topic that invites an unending supply of opinions, discussion, stories or poems.  This week, why not write about hair:  having it, losing it, styling it, coloring, cutting or even a time you experienced a hair style disaster.  Open up your old high school yearbook and take a look at that young person whose face in framed in a hair style that was popular at the time.  Chances are, if you’re like most of us, you have a story or two to tell about hair.

I’m a news junkie.  My day begins with NPR and ends with the nightly national television news broadcasts.   It seems like our news reporting is increasingly dominated by crisis, violence, crime, threats of war, conflict or disaster.   This past week, I saw the images of the horrible devastation in the wake of the deadly tornadoes that pounded America’s heartland, tearful parents and children after the shootings at an Ohio school, riots in Afghanistan, heard reports of the continuing massacres in Syria and the increasing tensions between Israel and Iran.  Then there were the inflammatory remarks by a well-known radio announcer which only served to highlight the loss of civility in our culture.

Is it healthy to be bombarded such a constant diet of negative news?  I struggle, many evenings, to feel hopeful about the world or the country I call home.  My heart aches as I watch the shocked faces of people gazing at the rubble that was once their home or listen to the voices of civilians captive in a war zone.  I am sometimes sickened by some of the opinions I hear or the trivial stories that get the news spotlight while so many in the world experience such enormous suffering.  I talk back to the political pundits and, by the time the broadcast has ended, I’ve become irritable.  Even the “feel good” stories that end the broadcast do little to offset the negativity.

I’m not the only person in the United States who feels worse after watching the news.  According to a 2007 study reported in the International Journal of Behavioral Medicine,  people’s positive feelings diminished and their anxiety worsened after watching the news on the major commercial channels.  And yet, we tune in, wondering aloud if things can get any worse.

Can it get any worse?  Afraid so, the news anchor seems to say.  In a poem entitled “Afraid So,” by Jeanne Marie Beaumont,  the litany of bad news questions we’ve all asked at some point in our lives defines the poem.

…Is this going to hurt?

Could you lose your job?

Did the glass break?

Was the baggage misrouted?

Will this go on my record?

…Could this cause side effects?

Is the wound infected?

Are we lost?

Will it get any worse?

By the time we reach the line, “will it get any worse?” we realize Beaumont has already answered the question in the poem’s title, “afraid so.”

Will it get any worse?  You’ve probably asked yourself this question from time to time.  Bad news happens to all of us. Job loss, foreclosure, a vicious series of tornadoes, death of a loved one, cancer.  “I have bad news for you,” the doctor begins.  “You have cancer.”

When the unexpected losses or tragedies happen to you, it can feel like some cosmic bad joke, even a kind of death sentence. Whatever you knew or took for granted is torn asunder.  Emotions rush in, competing for attention:  disbelief, sorrow, anger, fear, guilt.  You’re in the middle of your own personal disaster.  Why is this happening to you?  What can I do?  Will it get any worse?

We have all been challenged by unexpected tragedies, natural disasters, economics or serious illness at different times in our lives.  In those first moments of shock, we can’t imagine our lives will get any worse.  We’re not even able to imagine they can get any better.

Life changes fast.

Life changes in the instant.

You sit down to dinner and life as you know it ends.

The question of self-pity.

(From:  The Year of Magical Thinking, by Joan Didion, 2005)

Didion wrote those words just after her husband’s unexpected death, reminding us, as the news does each evening, how capricious life is, how anyone’s life can change for the worse in an instant.  …life as you know it ends.  “Good grief,” I mutter as I watch the television, “how much worse can it get?”  With so much bad news in the world, it’s hard not to have fear or worry seep into our lives.  How do we manage it?

Turning off the television might help, but in this world of instant communication, the bad news seeps in, making life seem much more fearful and disturbing than it actually is.  How do you keep your spirits up in a world seemingly dominated by conflict, suffering, or tragedy? Offsetting negativity requires we take action.

In the 2007 study mentioned earlier, participants who underwent  progressive relaxation exercises after watching the news reported improved moods. I’ve discovered that turning off the television and instead, practicing T’ai Chi,  listening to music or taking my dog for a walk has immediate positive impact on my mood.  When I’m besieged by negativity or worry that doesn’t seem to abate, I  write gratitude lists, reminding myself of those things and people I cherish.  Reaching out to others in pain or need pulls me out of my own doldrums and reminds me that I am, by most standards,  fortunate. Volunteering, supporting aid relief efforts,  or simply being a friend in a time of need—these actions help restore my belief in humanity and the possibility for good, healing and recovery.

Can things get any worse?  Yes, sometimes, but even if it does, we have to find the strength and resilience to cope with what life hands us.  It’s about more than survival.  It’s about hope too.  Perhaps there’s been a time you felt overwhelmed with bad news.  What helped you navigate  those unexpected and difficult life chapters? When things in your life got worse, how did you rekindle  the strength and determination to overcome the odds, to rediscover hope?  Write about it.

I’ve been spending a lot of time in movie theaters this past month, trying to view as many of the Oscar nominated films as I can before tonight’s annual Academy Awards ceremony.  Despite my frequently expressed annoyance at the quality of entertainment coming out of Hollywood, I’m just as eager as any other film devotee to sit in front of the television for hours on end one night each year, my paper ballot in hand, and root for my favorite films or actors.  Sometimes they win.  Other times, I tear up my ballot in disgust, and vow that I won’t watch the awards next year.  But I do, because I love film, good acting, and good stories, and there is still the flicker of that old enchantment that was Hollywood.

It was a fascination I  once shared with other wide-eyed pre-teen girls.  At our grade school slumber parties we ate popcorn, pored over movie star magazines, sent one dollar bills in stamped envelopes to buy our autographed black and white glossy of a favorite Hollywood heart-throb.  Some of us even dreamed of being on the big screen  one day.  We had no idea what it meant to be an actor, much less the combined effort and talent necessary behind the scenes to produce the films we loved (even if we preferred those movies starring Elvis Presley, Bill Haley or Sal Mineo, our idols at the time!).

Oscars: Not who will win, but who should win is today’s headline of the featured article in Sacramento Bee’s online “Wire Lifestyle.”  There’s reason for cynicism.  Many regard The Academy Awards as little more than a popularity contest, dominated by publicity and backroom campaigns.  Who should win?  I’d vote for Uggie, the adorable canine co-star The Artist, but he doesn’t qualify.  I’m fairly certain that several of my choices for the prestigious award of best actor or supporting actor may not be shared by the Academy this evening.  Does it matter?  Not so much.  It ‘s Hollywood, after all.

Now imagine that the stage is set a little differently–a film adaptation of a difficult period in your life, the story of pain, suffering or disaster,  and the strength that the actor, you, portray in overcoming the odds, all the obstacles thrown in your way.  And the Oscar for the best actor goes to…?  You, of course, but who were the players in your supporting cast?  The ones who made your victory possible?  This list is long, difficult to name, as we’ve seen when the Oscar winners pull those folded papers from their pockets and read off a list of names, people without whom your performance might have gone unnoticed.  It’s not always the obvious ones who make the list either.  Actress Michelle Williams, receiving a Golden Globe for her portrayal of Marilyn Monroe in My Week with Marilyn, paid tribute to her six-year-old daughter, Mathilda:  I consider myself a mother first and an actress second, and so the person I most want to thank is my daughter, my little girl, whose bravery and exuberance is the example that I take with me in my work and in my life.

Think about it.  Our lives always involve a supporting cast, even if their roles are small, their presence temporary.   In the poem, “Finding God at Montefiore Hospital,” Lorraine Ryan describes one such person important to her cancer recovery.  During her hospitalization from a bone marrow transplant, Ryan noted that  doctors stopped by only momentarily, but “this sweet man, Juan, was one of the few people…genuinely interested, who showed he really cared,” she said.

…Pine and ammonia rose like incense.

With every move he looked up:

“How’s it really going?”…

Sometimes when I couldn’t lift my head

Off the pillow—

When vomiting and mouth sores

Wouldn’t let me speak—

The swish of his mop

Bestowed the final blessing

Of the night.

(In The Cancer Poetry Project, Karin Miller, Ed., p. 20)

None of us can make it through the dark times life hands us without the support of others, even, as Ryan shows us, an unassuming janitorial staff member.  Think about your life.  You’ve come this far in your life, surmounted obstacles, weathered life-threatening or debilitating illness, losses, or other trauma.  Your life story is as poignant and inspirational as any of the stories  rendered on the big screen.  Surely you surely deserve an Oscar for your performance—finding courage, determination and resilience in yourself at a time when so much seemed insurmountable.   But who helped or was at your side?  Who would you honor as your best supporting actor?  Or, if you wrote an acceptance speech for your Oscar, who are the people you would name with gratitude for their supporting role in your achievement?     How have they made a difference in your life?  What would you say to show your gratitude or appreciation for their role as  a “best supporting” cast member?