Thursday, June 6, 2013

When What I Feared Most Came to Pass

What happens when the thing you feared the most comes to pass?  What happens when the words are spoken again, and they mean something about you?  Malignancy.  Tumor marker.  Cancer.  Pathology?  I have lived long enough now to know that what our minds invent out of the tendrils of our fears -- these mental inventions bear little resemblance to reality.  I imagined falling to my knees.  I imagined myself curled up in terror and defeat.  I imagined my heart galloping.  I imagined a sense, even, of failure.

What I feared the most these last three years has come to pass.  I have cancer.  The how and where and why and what kind is still a mystery.  First, it seemed that Craig and I had been ushered onto a tiny boat, maybe the size of a rice cake, and pushed off shore.  A current soon carried us far into the fog.  We clung to each other.  We stared for hours into the fog, not seeking anything, not trying to see.  We drifted.  Jags of crying came on like squalls, passed, leaving us empty, dripping.  When what I feared the most came to pass, I felt oddly calm.  Everything slowed down.

When what I feared the most came to pass, in the hospital last Friday, suddenly shuttled for a chest x-ray, then a CT scan, then a procedure to draw three liters of beer-colored fluid from my lung lining, my friend Jo held my hand, locked eyes with mine.  She watched what I could not watch.  I gave over my body to the caring hands of people who let me know it pained them to cause me pain.  I gave myself over.

When what I feared most came to pass, I walked into my love's arms.  We wept.  We looked around and into our lives.  I thought, I have been given a heaven on earth.  I have lived in paradise.  There is nothing I want, nothing I would change, nowhere I would go.  My bucket list is for more of what I have.  It runneth over.

When what I feared most came to pass, I knelt in the garden and planted French tarragon, a perennial.  I tended the flower beds.  They look better than they have in years.  I look at them and see the promise of creation, of beauty.   I went to the greenhouse.  I watered the tomatoes.  I stared endlessly at the spring green of the leaves.  I listened to birds.  I watched clouds passing.  I looked over at my love.  "This is it," I said.  "This is all we have, right now, right here."  I knew everything I'd read of Buddhism to be absolutely true.  There is no future.  There is only this salad he has made for me, and these legs which took me on a long bike ride today, and these lungs filling with breath.  This is all I have.  I will not waste it with worry over tomorrow or regret over the past.

When what I feared most came to pass, my sister-in-law knelt down in her shower and prayed for me.  My sister said "I am ready; come here."  Craig said, "You are the love of my life."  My friends said "Let's play Scrabble."  My doctor said "I love you."  Another friend came and looked deeply into my eyes, until I could peel the layers of protection away.  When what I feared most came to pass, my oncologist told me it was a time for courage and hope.  All of my blessings, they rained down upon me.  They are raining down upon me right now.   

Monday, June 3, 2013

A Creation Story

This is a hard post to write.

On Friday, I found myself in the hospital with a collapsed lung, a pleural effusion -- the lining around my lungs filled with a beer-colored fluid, which a surgeon drew out with a long needle, filling three liter-sized glass jugs.  So much fluid, my liver, heart, trachea, all were shifted out of place.  This morning, a sample of that fluid was on an airplane, heading for a pathology lab in Anchorage.

And I am here, my feet in sealskin slippers on the ground.  Today I am waiting, once again waiting.  Today I am both afraid and numb.  And open, also, strangely so.  How does one wait?  Out of reflex, one calls it "limbo," this waiting, this not-knowing.  Should I watch movies?  Should I clean the refrigerator?  Should I prepare for the workshop I'm teaching at a conference in a couple weeks, as if, as if?  Should I answer emails?  Should I make phone calls?  Should I think positively or prepare for the worst?

A friend from Cape Cod sent me a note a couple days ago, and I just reread it.  She told me that she was thinking of me as she pulled "pottery from our earth pit this morning and some of it broke as always."  I saw a photograph of this earth pit, of small vessels being raked out of the ashes.  She wrote:

ash and clay
wind and fire
heart and rattle
a dirt womb
a belly bowl
a place for prayers and dreams
a place for offerings

She said she "gave thanks for all that survives this kind of heat, this kind of living down deep in the heart of the matter."

She wrote:
i send an ocean wave
a meandering path
a poppy's bright orange face blessing
And I realized that there was another way to wait.  That the word "limbo" is a short-cut, a cliche.  That whatever comes next in this day, in this week, in this moment, in this life, requires an act of imagination, of re-imagination.  It requires more than medicine, distraction, analysis, pathology, diagnosis, procedure, to-do list, platitude.  When there is nothing I can do, nothing to speed along an answer.  When there is no one who can divine my future or fate.  Then an act of imagination is required.  To imagine what I have never imagined before.  To create what I have never created. 
I want to dig myself a dirt womb.  I want tunnel down to the place of prayers, dreams, and offerings.  I will rake something out of the ashes of whatever comes next.  I will rename whatever this experience is and will be.  Whatever this experience is and will be, whatever this place is where I am waiting, and where I will be no longer waiting, it will not be called "cancerland."  It will be newborn, never before imagined or realized, mine and mine alone.  

Thursday, May 23, 2013

In the Greenhouse

I am sitting in our greenhouse while a gentle rain falls outside.  I am sitting with the flowers I repotted today in the hanging baskets and window boxes that will decorate the deck, but which now are staying in here.  It’s been a cold spring.  It’s May 22, and there are no leaves yet on the birches.  The elderberry bushes at the edge of the forest and gooseberries in the orchard are the only things showing a little unfurling green.  But I am warm in this humid, light-filled, humus-smelling shelter, gravel beneath my feet, sitting in a canvas folding beach chair Craig just brought home for me from Ulmer’s Drug and Hardware.  I can hear birdsong.  It is all around, the birds really going at it, singing like there’s no tomorrow, building nests, chasing off intruders into their territories.  So much to do in the short sub-arctic summer, and they are doing it.  I’ve spent a lot of time here this last week.  It’s one of the places I’ve felt most at peace, besides the beach I walk to town sometimes, or the forest and swamp trails within a mile of my house.  I’m not what you’d call a meticulous gardener.  I’m more of a Latvian gardener in the style of some of my friends back in the old country.  My window boxes are made of scrap lumber, unvarnished.  The table holding the long boxes of nasturtiums is made of old gray plywood supported by three defunct tires. 


This afternoon, I picked up a book that I keep on the ledge of the greenhouse.  It’s a book by a poet who was a meticulous gardener, a New England gardener, and it’s his words that sent me back to the house to get my computer and to call Craig to ask him to pick me up a folding chair so I could write in the greenhouse.  The book is called The Wild Braid: A Poet Reflects on a Century in the Garden.  It’s by the poet Stanley Kunitz.  Yes, a century in the garden, for real.  He died at 101, and he wrote the book, with the help of a friend, at 100, at which point, he was still gardening (and writing poems).  The photos in the book show opulent gardens of his Provincetown, MA home, Victorian spill-over gardens of anemone, foxglove, bearded iris, things we can only dream of up here in the north.  And yet I do dream of them, and my plan this year is to consolidate my perennials into just a couple beds I can actually nurse along into exuberance.  Perhaps if I content myself with less, something opulent and lush will grow up in that more intimate space.  Nevertheless, I am comfortable in this rustic, non-opulent, funky greenhouse with its piles of pots, its rough-cut lumber beds of soil Craig and our friend David dug from under the elderberries.  They hauled the dirt from under the thicket in salvaged five-gallon pails I use for tomatoes, and I mixed that dirt with composted fish from a farm up the road and compost from our own heap and fish fertilizer.  Ragged old pieces of shade cloth keep the young plants warm at nights, as the temperature still dips down into the 30’s.  I’ve been calling this a recalcitrant spring, and in town you hear a lot of moaning.  When I consider the temperature in other parts of the country right now, I truly feel like I am orbiting some other, shyer sun.

Recalcitrant spring, recalcitrant body.  This has been a rough patch of life this last couple months.  I don’t want to belabor the physical body issues, but the short of it is that the malaise I wrote of in my last post was at last diagnosed as an Helicobacter pylori infection in my stomach, which has given me an ulcer and reflux and shortness of breath and other spooky symptoms.  I have felt, oddly, much like I did when undergoing chemotherapy nearly three years ago.  Then, as now, I could only eat certain foods, felt uncomfortable in my body much of the time, breathed hard after climbing a set of stairs.  My usual physical routines have been interrupted, and so I’ve had to slow down.  This has had its blessings, I admit.  Instead of running, I’ve been walking a lot with the dogs.  But the most calming, healing thing has been to come to the greenhouse, to tend to these plants.   It hasn’t been easy to keep my equilibrium, as the healing process is never linear, with its good days and bad days and frustrations and fears and hopes and let-downs.  And yet this morning, Craig reminded me to consider all that I do have, to be present with all that I can do, and so I have tried. 

I have avoided writing in this blog, as I’ve struggled to find the meaning in feeling so lousy for so long, and frankly, in not handling it with much aplomb or grace.  But something shifted in the greenhouse when I picked up the book by Stanley Kunitz and read this:  “There’s a conversation that keeps going on beyond the human level, in many ways, beyond language, extending into the atmosphere itself.  Weather is a form of communication.  There is an exchange between the self and the atmosphere that sets the tone for an entire day.  The changeability, its overwhelming range of possibilities, exercises a more defined influence on human moods than perhaps anything.”  In the greenhouse, that conversation is plain to me.  It is no longer the conversation with the body, and that is a relief right now.  The conversation manifests as the rhythm of the rain, which waxes and wanes, and as bird-spats, the robins, the fox sparrows, the varied thrushes, and humidity and the smell of damp, rich soil.  No matter what is happening in my body, I can be part of that conversation, an eavesdropper or a participant.  And more than that, I can listen for what it might mean, what I can learn.

This is the paragraph in the book that truly turned me back to this writing, to writing in this greenhouse where I am not only having a conversation with the page, with the imagined reader, but with everything going on outside me, even with the plane that just took off and headed to Anchorage.  Wise 100-year old Stanley wrote:  “The storm we had the other day was rather spectacular; I felt it was somehow a message.  It seemed so threatening at first, and then suddenly it was just a little downpour.  And then it dissolved into a quite peaceful late afternoon.  I interpret it positively.  I had felt a sense of foreboding, certainly for the last few months, and psychologically this seemed to say, ‘Stop thinking negatively about whatever’s happening now.  Find out what you can do, and do it.’”

What a relief to read those words, to know that another human being had felt “a sense of foreboding, certainly for the last few months,” and yet had continued to tend his garden and write his poems.  This is the (one of the) lesson(s) of illness and of healing.  No matter what ails, no matter how small the range of possibilities, you “find out what you can do, and do it.”  During chemo, on good days, I worked with my sister in her garden.  On bad days, I circumabulated her lawn.  On really bad days, I admit, I sat on the couch with my niece and watched Say Yes to the Dress, reality TV at its horrid best.  Now, as then, true solace isn’t found inside the house, and God knows it’s not found on the Internet, Googling symptoms, anti-biotic failure rates, and side-effects.  Right now, all of those things I’ve accumulated in this life, the furniture, the sentimental rocks, my mother’s tea cups, the rows and rows of books, the knowledge, the clothes, the telephone, they feel a world away, even though they are just up the driveway.  All I need is this cheap canvas chair, the songs of these birds, this shelter from the rain, the life of these plants I’ve tended from seeds, the dirt under my fingernails, and this one book open in my lap.  Soon I will walk out this door, and head for the kitchen to make dinner and to take my nightly medicine that is doing its good work to clear the nasty bug out of my gut.  But as I learned during cancer treatment, there are many kinds of medicine, and a pill can’t heal the whole person.  The path to healing is a labyrinth.  The medicine of the greenhouse can’t heal an H. pylori infection just as a garden can’t cure cancer, but it can heal the mind’s equally painful malaise.  It can suggest an alternative to self-pity, to despair for what’s been (temporarily) taken away.  “We have storms and stresses and positive indications and negative indications that affect us every day.  Each of us is a very sensitive keyboard.”  So sensitive that a molecule of compost scent can balm the spirit, or a harsh word can untune the soul.

I place the book back on the sill, take one last look at the cover image, Stanley Kunitz in a blue and black plaid flannel shirt and tan corduroy pants leaning over to inspect some ferns and petunias.  I take one last deep breath of earth-musk.  Tune in one last time to the conversation of birds, and fold up my chair for tomorrow. 


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.

Thursday, March 21, 2013

Alaskan in Asja Land

My last evening on Cape Cod.  I'm sitting in the window of the coffee shop, watching the wind trouble the bare branches of oak trees and flap the awning and drive the low-flying cumulus.  The sun is low, blaring through blue clouds.  The rest of the sky is that pale blue, yes, of a robin's egg.  It's cold, maybe in the low 40's, but walking across the parking lot, I heard my first robin songs.  Winter's not letting go of the East, but I am, for another six months.

This afternoon, as I have every day I've been on the Cape, I visited my mother, who lives in a nursing home in Chatham.  She's 85, and she can't walk.  A brain aneurysm fourteen years ago ruined her leg, shattered her life, changed so much about her, but not some deeply essential poignant Asja-ness.  I almost said sweetness, but my mother is not always sweet.  Most of the time, she is.  But she is also sometimes agitated, sometimes confused, sometimes angry, sometimes impatient, sometimes sad.  My mother can't or won't do many things she used to do.  She no longer reads, or knits, or writes letters, or answers the phone.  And though she can't access all the emotions she once knew, she can't fake or hide the ones she has.  She is 100% authentic, 100% real.  When you are in the presence of such rawness, it's hard not to be real, too.

This afternoon, I breezed into her room, switched off the TV, filled the teapot, heated water, and plopped down in her wheelchair.  She watched me intently from her recliner.  After notating a birthday card from her to my nephew, and one to my stepson, I read to her from my book, telling her the story of a woman who disliked me intensely when I was young.  She listened.  She took it all in.  Sometimes, when she's experiencing a complicated emotional reaction, she struggles for words.  How could this be, she asked.  That is one way this woman is still 100% my mother.  A mother is someone who can't fathom how her child could be disliked.  Often I read to my mother, as she has always loved stories.  Sometimes we call friends and relatives.  Always I update her on goings-on at my sister's house, or in my family's life.  Often we look at photographs.  But it's been a long time since I've talked to my mother like that, telling her the whole story of this woman who disliked me, puzzling it out with her, processing it.  She listened, was 100% there.  And then.

She looked up suddenly at the clock on the wall, and visibly startled:  "It's 5 o'clock!" she exclaimed.

I startled too.  I'd been looking at her bedside clock, which hadn't been advanced at daylight savings.  I'd lost track of time, and all at once, it was time for me to head to the next town to pick up my niece from her cello lesson.  Now my mother was agitated.  "Are you okay Mom?"  I asked.

"Yes," she said, though she clutched one hand with the other, kept turning to look at the clock, fidgeting.

"What time do you eat dinner?"

"Five o'clock," she said.

"Don't worry, the aide won't forget you.  Has the aide ever forgotten you?"


"Do you want me to keep reading?"

"Yes." But as I started up, she kept fidgeting.  "No," she said.

I put the book down.  "Are you hungry Mom?"

"Yes," she said, her voice higher than normal.  Something rushed up through my body, wrapped hard around my heart.  I looked at my mother.  She was anxious for supper, for this steady ritual in her day.  She wanted to be on time.  She didn't want to be left behind.  I hesitated just a second before I responded to emotional flash-flood.  I grabbed her hand. 

"Mom.  I love you so much."  In that moment, I loved her with my entire body, a visceral, animal love.

She grabbed my hand, locked her eyes with mine.

"I love you too."

And then the aide arrived to take her to supper.  "See you tomorrow, Mom," I said.

What does this have to do with Cancerland?  Nothing.  A brief conversation with my sister the other day, about "survival rates," about so-called "cure rates," about late recurrences of breast cancer, threw me back into that realm again.  It's like a seizure in my life now.  Rare, but serious.  Cancerland:  that place where I sit in the same room with the word "cancer," befuddled, uncomprehending.  That place where cancer casts its shadow on me.  When I fall into that place, I start browsing the web for cancer news.  I reread the same statistics. Why?  Sometimes I reread the pathology report from my surgery, nearly three years old.  I wake up scared.  I worry about the ache in my side.  Am I living a cancer-inducing life?  Stressing out too much?

The thing about being with my mother now, and the thing about being with her as I went through cancer treatment, is that she does not live in Cancerland or Aneurysmland.  She lives in Asja-land, and it is immediate.  It is supper time.  Or it is time to drink tea and read a book.  Or watch birds at the window feeder.  In the presence of my mother, I have only one job, and that is to be fully present with her, to be fully alive in that small room.  To not hesitate even a moment before responding to the over-riding impulse of my heart.  To grab her hand.  To grab that living hand and hold it tight while I can.