Wednesday, April 17, 2013

Fear is a Smokescreen

I think I am struggling with fear, but I am not.  I am struggling with something else.  Fear is a smokescreen.  These last three weeks, worried about an ache in my side, I’ve been dragged down by the feet into a vaporous place. Unfocused. Numb. Yet scared.  All the logic, self-talk, and advice can’t bump me up and out of this place.  It’s not that simple.  It takes more work, digging, clawing my way, not out, but deeper in.  I am trying to see beyond the smoke.  My brother-in-law last night said, “When you are afraid, go into your fear, go deeper, and it will dissipate.”    

Today I am on another airplane.  I’m on my way home after five days in Encinitas.  Craig and I flew down for a poetry reading in LA, and to visit family.  Every day, I ran or walked, sometimes in sun, sometimes under low clouds.  I was drawn to the beach, a stretch of flat sand tracked by gulls, whimbrels, sanderlings and their kin.  A low-sloping beach sheened by the vitreous leavings of waves.  A flat horizon, next landfall, Hawaii.  Surfers in black wetsuits floating like seals, waiting for swells, which crested Coke-bottle green, shadows of kelp backlit for a moment before breakage.  On the beach, displaced bull kelp lay in heaps, coils, spirals, snakes.  Human beings walked, ran, biked, or sat with eyes closed, meditating.  I like to be alone among humans. It is private and soothing to be a stranger, taking off my shoes, running along the waterline, waves sloshing against my ankles and pulling back, dizzying me, no one saying hello.   The way back to my family’s house took me up a steep hill, alongside a small park with trees and benches.  There I’d pause, winded from the climb.  I’d sit under a flowering tree, alone there with my fear.  The fear which had run with me like a companion, keeping up its end of a conversation in my head, my mind scrolling through the possibilities:  Muscle pull?  Pleurisy?  Cancer recurrence?  Yesterday, sitting there, I tried to brush the smokescreen away.  If cancer has come back, so what?  What good will my fear have done?  I wanted to cry for every unappreciated moment of feeling completely strong and healthy in my body these last three years.  Had I wasted time?  Was my body speaking to me, warning me, asking something of me?  Or simply uttering a cry to itself?  What if the voice of my body, this ache, that pain, is not meant to be heeded at all?  What if it’s not telling me anything?  And if cancer comes back, so what?  That’s the question that circled back, again and again.  In that question, there seems to be some secret, some key to my sense of being lost, isolated, these last three weeks.  Or some key to this whole dilemma of life – After? With? – breast cancer.  I don’t know my fate.     

On the plane, over the serrated, snow-striated mountains of British Columbia, I finish reading Terry Tempest Williams’ When Women Were Birds:  Fifty-Four Variations on Voice.  At the end of this book-length essay, she writes of her diagnosis of a cavernous hemangioma, a tangle of vessels in the part of her brain called Wernicke’s, “the home of language comprehensions, where metaphor and the patterned mind live.”  She had a bleed there, with transient symptoms.  It could bleed again, but likely not.  She was offered two choices:  surgery or “wait and watch.”  A doctor asked her “How well do you live with uncertainty?”

I have written recently that I do no live well with uncertainty.  Or, more accurately, lately, I have not been living well with uncertainty.  My fears and untamed thoughts have been living my life for me.  Williams quotes from Loren Eiseley’s essay “The Judgment of Birds” near the end of her book.  He describes once waking in the woods to terrible cries.  A raven has grabbed a nestling, and the parent birds were circling and shrieking. “The sleek black monster was indifferent to them.  He gulped, whetted his beak on the dead branch a moment and sat still.”  And then other birds arrived and began to sing.  “And he, the murderer, sat on there, unmoving, unperturbed, untouchable.”  What a perfect description of cancer this is.  Or the grim, feathered reaper in general.  Eiseley writes, of the other birds singing, that it was a judgment:  “It was the judgment of life against death.”  Song sparrows arrived one by one and began to sing.  “They sang because life is sweet and sunlight beautiful.  They sang under the brooding shadow of the raven.  In simple truth they had forgotten the raven, for they were the singers of life, and not of death.”

How can one not think of the deaths and maimings in Boston, reading these sentences?  The monster, and the singers – all those who offered comfort.

“To be numb to the world is another form of suicide,” Williams writes.  I have been numb.  This smokescreen is a manifestation of numbness, of sleep-walking through my life.  Fear hides this truth from me.  Fear is a distraction from more important questions, like another one Williams asks: “How do we move beyond our own diagnosis?”  I have not moved beyond my diagnosis.  I don’t know how to move beyond it, but I know I must try harder.  I am being hard on myself, I know.  My writing has been a process to trying to plow forward, to feel my way, with my eyes closed.  I am feeling my way into uncertainty.

Williams writes “This vascular malformation could bleed and burst.  Or I can simply go on living, appreciating my condition as a vulnerable human being in a vulnerable world . . . “  A vulnerable world.  That is our birthright.  But, Williams writes, “there are so many ways to change the sentences we have been given.”

How do I change the sentences I have been given?  The sentences of breast cancer?  And all of my other sentences, the ones I drag behind me, from nearly fifty years of living?  In a month I’ll be fifty.  How shall I live?  That is the question behind fear’s smokescreen.  Not “Will I die?”  Not “What is wrong with me?”  Not “What is my prognosis?”  Not “What are my chances?”  Not “How much time?”

The answer to the question “Have I wasted time?” is yes.  I have woken morning after morning failing to ask the most important question.  Not “How do I feel?”  But “How shall I live?  How shall I live today?”  What will I do with it, this ribald ruby sunrise, or this subtle dove-gray one, handed to me on a platter called Kachemak Bay, or the Pacific, hidden by a snow squall, or gleaming under moonlight, or shattering in sun?  What will I do with it?  Don’t let me waste it.

Terry Tempest Williams’ mother wrote this:  “There are two important days in a woman’s life: the day she is born and the day she finds out why.”

I want to find out why.  Why and why and why, or die trying.  Today, I know why I am writing this blog.  It is not to chart anything.  It is not to instruct or to impart.  It is to say to some stranger, like those humans I passed on my beach runs,  “You are not alone.”  But more importantly, it is to ask myself, when fear comes, and when it doesn’t, the question “How shall I live?”  And to hold myself accountable to the answer.   

Sunday, April 14, 2013

Loathing Fear and Loving Fried Turnip Cakes

I just learned something truly weird.  The day I wrote my last post, according to Facebook, was World Cancer Day.  No wonder the weather sucked.  No wonder the woman fitting me for new glasses that morning asked me if I was "in remission."  (She had access to my medical questionnaire).  No wonder I read an essay in the LA Times about the wrong things to say to people with serious illnesses.  "Are you in remission?" was not on that list, but having been asked the question numerous times, I'd say it's on my list of questions not to ask people who've gone through cancer treatment.  First off, what motivates a person asking this question?  And what if the answer is "No?"  How would a stranger or casual acquaintance react?  "No, it's not in remission.  As a matter of fact, I'm dying of cancer.  Now can I please try on these cool frames?"

My oncologist never uttered the word "remission" in all of our conversations.  The only time he uttered a variant of the word "cure," (as in, "when we use chemotherapy with curative intent") I asked him to repeat what he'd said.  He looked at me, surprised.  "Of course that's what we're doing," he said.  I burst into tears.  Going through treatment I barely looked ahead more than a day.  "Just tell me what to do and I'll do it" was my unarticulated motto as I put my head down and bore my way forward, like a Clydesdale yoked to a massive pile of logs.  Because most oncologists don't use the word "cure."  I never heard the word "prognosis" used by a doctor either, but near-strangers have asked asked me for mine.  What do I tell them?  What happens to breast cancer's tiniest traces after treatment has had its way is anyone's guess.  Perhaps (and how we pray) the onslaught destroyed every last mutant cell.  Perhaps dormant cells remain, asleep, never to awaken (a second best outcome).  Perhaps they lodge in the lung, in a bone, and incubate.  There's no test to tell you either way.  The oncologist says, "If you feel healthy, then likely you are."  The numbers you read, the survival statistics, lump every type of breast cancer together, and reflect the data for five years post-diagnosis.  "You have to learn to live with uncertainty," the doctors and social workers tell you.

So when a person asks about prognosis, or remission, what happens to the person who's had breast cancer is a drop.  The way a raft drops down a lip into a big rapid.  You find yourself in a recirculating hole, which roils with all you don't know about "your" cancer.  When a person asks those things, uncertainty rears up like a standing wave.  You have choices.  Is it an opportunity to educate the person about breast cancer biology?  To draw a boundary?  To ask the questioner to question her own intentions?  My counselor suggested I respond this way:  "Why are you asking me that?"

When I sat down in front of the counter with the round mirror in its silver frame, the glasses frames I'd picked out arranged front of me, and a woman I'd just met asked, suddenly:  "Are you in remission?" the ordinary act of picking out new glasses pretty much shattered in my lap.  I was back in Cancerland.      

The intentions behind World Cancer Day and the question "Are you in remission" are caring, not ill-willed.  Still, both things rub me the wrong way.  But it's kind of fun to imagine a World Cancer Day parade.  With bagpipes.  And baton-twirlers.  And ginger candies and wigs flung from various cancer floats, the pancreatic, the lung, the blood, the breast.

When I told Craig about the woman at the eye doctor's, he suggested this rejoinder:  "Do you know how much time you've got left?"  Sometimes, I feel terribly isolated with my fears.  Today, in a car with five others, I thought to myself:  "I'm the only one here who's had cancer."  I allowed myself to indulge in a little "why me"-ing.  This morning too, taking a run, I stopped in a little park, sat down, and had myself a self-pity party.  I struggle mightily with fear, and it comes in spasms.  Long respites -- months even -- of calm are interrupted my a few weeks of devil possession.  "Cancer wrecked my life," I thought, sitting there, hunched on the park bench.  "I'm not cut out to be a cancer survivor.  I can't do it."  I thought of what a guy at the Homer airport said to Craig when he was about to fly out to Boston three years ago to help me get through surgery.  The guy's wife had had cancer.  He told Craig the key was positive attitude.  "I suck at positive thinking," I snuffled.  And then I jogged back home and took a shower.  Later, I ate dim sum with those five people who'd been in the car with me, those five non-cancer survivors.   But it's a fact that none of us sitting around that round table in the Chinese restaurant, stabbing fried turnip cakes and jellyfish with our chopsticks -- and none of you -- knows how much time we have left.  If we're born into this life, the prognosis is not good.

There are other ways to look at the word remission.  In physics, it is the scattering of light by a material.  The Latin remissionem is "relaxation, a sending back."  Remittere is to "slacken, let go, abate." How I want, in those moments of intense fear, to slacken, relax, to send it back.  When a person has had cancer, a stranger meeting her eye is perhaps is in the path of scattering light.  Are you in remission?  Because I, too, am alive here on earth, and thus, afraid.  None of us is alone in this.  We are all light, scattering, as we reach our chopsticks for another curl of squid.       

Tuesday, April 9, 2013

To Limbo and Back: A Gratitude

A wintry April day, mean north wind sledding down the bluff, hurling tiny snow grains sideways at my face as I walk from the eye doctor’s to the coffee shop.  Now, ensconced at a corner table with a warm cup of chai, I vow to finally write a blog post, long overdue.  I’m cozy here, in wool pants, a sweater, until one of the baristas strides over and opens the window beside me.   The kitchen must be hot.  A potted tree now sways and shudders its leafy branches in the breeze.  A newspaper flutters to the floor; the wind turns the pages of a magazine, and now, delicate clouds of snow stream in, like talcum from a powder puff (that’s been stored in a freezer).

Today is the two-year anniversary of my friend Lauren’s second cancer diagnosis.  Two years ago, we were both getting mammograms on the same day, mine “routine,” hers because she’d found a lump above her remaining breast.  (You can look back to my post around two years ago to see what “routine” was like for me).    Last week was the three-year anniversary of my diagnosis.  When Lauren and I  talked on the phone the other day, she told me that she intended to mark this anniversary consciously, to celebrate her recovery.  When I asked if she’d decided on a plan, she said she hadn’t yet.  This morning, when I opened up my email, I saw that she’d settled, in part, on marking the day with gratitude.  I was one of many recipients of Lauren’s email message, thanking her posse of friends and healers for supporting her through the ordeal of treatment, and the recovery after.  Does recovery ever stop?  As my own posse can attest, it doesn’t, at least after three years.  Another concurrent anniversary, March 24, suggests recovery takes way longer.  Twenty-four years ago, the Exxon Valdez ran aground, poisoning Prince William Sound and the coast all the way to the end of the Alaska Peninsula, where the Aleutian Islands begin.  Anyone who lived through the spill can attest that recovery occurs on its own time schedule, not budged by our human wishes.  Ask the orcas.  Ask the sea otters and marbled murrelets.  Ask the herring.  Ask the fisher-folk and the beach gravel.  Whenever I see one of those laden crude oil tankers skulking its slow way down Hinchinbrook Entrance, flanked by glaring yellow tug escorts, the shadow the spill falls on me.  Perhaps I expect too much of myself, in terms of recovery.

Lauren and I had one of our long talks the other day on the phone.  I don’t have a cancer survivor support group here in this small town.  I have Lauren.  She has me.  And yet, when we go through what I can only describe as spasms of fear, which pass through from time to time like earthquake aftershocks, we don’t call each other.  We think about calling.  But we don’t pick up the phone.  We hold our fear close.  We don’t want to scare each other.  If I told her about my side-pain, told her I feared it was cancer in my liver or lung or ovary, would I trigger worry in her?  Add to her own cancer recurrence paranoia?  But I also don’t tell Craig about these fears.  I don’t tell a single friend.  The first person I tell, after working myself up into near-panic, is my sister.

So this is what’s been happening since my last blog post.  Not a respite, not a hiatus, not, no reason to post a blog because cancer’s not on my mind, but the opposite.  And it’s strange to admit that my own cancer anniversary did not register in my conscious mind until it was too late.  Too late to prepare, to anticipate trouble, much less celebrate or make a ritual.  That’s the rub.  When you prevent awareness from stirring up trouble, the subconscious steps in to stir up its own insidious, devilish brand.

Back east last month, after a plane flight, I woke one morning with a pain in my waist, under my right ribs.  When I took a deep breath, I felt a stab.  My doctor-sister felt the spot, said it was muscular, take Advil.  Being me, I didn’t.  I ran, did power yoga, thinking the pain would fade on its own.  But it didn’t.  By the time I got back to Alaska, it was waking me up at night.  And so, before I called my sister, I let cancer-terror take charge.  Jet-lagged from my travels, ungrounded from having been so far from home for three weeks, alone in the house without Craig (he was still in Hawii), I turned to the Internet, which for someone like me, should be nicknamed to Fast Road to Hell.  They call it searching.  And indeed it is, though it’s metaphysical.  Am I going to be okay?  Death, is that you?  It is not rational.  Searching may bring you to get in the car, but fear is what drives this road.  The verb for the road to hell is not “search,” but “google”.  I googled liver metastases.  Lung metastases.  I googled kidney cancer.  Pancreatic.  Ovarian.  And then the lesser cousins, taking side-roads, directed there by links and discussion boards.  Kidney stone.   Gall bladder disease.  Gastritis.  On the breast cancer chat rooms I recognized fellow travelers on the Road to Hell.  Women fearful of similar aches and pains.  The responding stories of speculating others.  Perhaps these places are a kind of limbo, where we, existing for the moment between life and death, between the land of the well and the land of the sick, wander, searching for reassurance, often getting the opposite.  With my Catholic upbringing, limbo always called up images of mist, like fogs creeping across the moors where King Lear raved in his final days.  In Cancerland’s online limbo, the mist is composed of fear.  And when you go there, you breathe it.  When you wander there, the mist obscures your vision.

Finally, I called my sister.  And she told me that I had to email my oncologist.  “Only he can reassure you,” she said.  And she was right.  He did.  And the pain faded away (with the help of a lot of Advil and no yoga or running).  But the night before I finally did call him, the night I realized it was the anniversary of my cancer diagnosis, I broke down completely.  I woke up at 2 am, my side zinging.  I cried, then spasmed through one more google nightmare ride until 4 am.  In the morning, I sobbed in my friend Margaret’s kitchen.  I emailed my oncologist, and then I drove to a radio station to be interviewed about whales and the Exxon Valdez oil spill.  After the interview, when I read my oncologist’s reply email (what you describe does not sound like cancer to me; most symptoms like yours turn out to be benign, and resolve on their own; treat the symptoms and wait it out), I cried again with relief.  And not just any relief.  With the big relief of every mammogram that is clear.  With every check-up in which I’m pronounced “the picture of health.”  A relief as deep as the plunge into hell had been.  I spent that afternoon at my friend Marybeth’s house.  Marybeth wrote a book about the oil spill.  The Heart of the Sound, it’s called.  In it, she grapples with the oil spill and the ending of her marriage.  Like me, like the Sound, she has never fully recovered from that spill.  And she never will.  But Marybeth knows something about healing.  About balming a wound.  She made me a sandwich, gave me Advil, brewed me a cup of tea, talked with me for hours, took me for a walk to a half-frozen stream where she’d seen a wolf.  She handed me a towel and opened the lid on her hot tub.  She and her husband took me to dinner.  And the next morning, I picked up Craig at the airport, and the pain in my side was a mere figment.

I’d like to be more poetic in this blog post, but it’s not a poetic day.  The sky is a dingy blank, the wind’s still damn cold, spring won’t come, and I can still feel a tiny twinge in my side if I sit too long in this chair.  The coffee shop is frenetic with conversation.  The Rasta-flag colored walls are too bright.  My cup of chai is empty.  But it’s a day for gratitude, so I’ll follow Lauren’s lead.  I’ll honor her anniversary, and my own, with this litany of names, those friends and family who got me through this latest spasm of fear, who got me out of hell and back into the land of the living.

Mara, Lauren, Margaret, Greta, Jo, Steve, Asia, Michael, Marybeth, Rick, Lowell, Craig, Erin, Judy.

Thank you.