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When what I feared most came to pass

First of two parts

In 2010, at age 46, Homer author Eva Saulitis was diagnosed with an aggressive, less common subtype of Stage 2 hormone-positive breast cancer that had invaded lymph nodes under her right arm. After eight months of treatment in Boston and 2 1/2 years of health and recovery in Alaska, in 2013, "strange symptoms landed me in the ER," she wrote. "We were shocked to learn that breast cancer had re-appeared in the pleura of my lungs. My cancer was now Stage 4, incurable, with a mean life expectancy of two years. During the two unsettling months leading up to this diagnosis, my garden and greenhouse in Alaska were my refuge. I started thinking of it as 'Hope Farm.' Since then, as the cancer has progressed, through writing, which is the ultimate act of cultivation, of planting and tilling, of growing and dying, I've redefined my relationship to hope and to death. I've learned that there are Hope Farms everywhere, wherever we are planting seeds, and in this endeavor of reimagining hope, I am buoyed by a tremendous support group, and by the earth itself."

Saulitis is married to biologist Craig Matkin, and together they have studied the killer whales of Prince William Sound for nearly 30 years. She is the author of four books of poetry and non-fiction: "Prayer in Wind," "Into Great Silence: A Memoir of Discovery and Loss among Vanishing Orcas," "Many Ways to Say It" and "Leaving Resurrection." Saulitis' essay, "Wild Darkness", originally published in Orion magazine, was reprinted in the Oct. 25, 2014 issue of We Alaskans. Her most recently published essay appeared in the August 2015 issue of The Sun magazine.

The following is the first part in two-part exploration of mortality, hope, and nature, excerpted and adapted from Saulitis' journal posted on the Caring Bridge website.


The day I learned my breast cancer had metastasized, I wrote the seeds of the following on my blog, and I live by it still. Everyone diagnosed with cancer, no matter the stage or prognosis or success rate of treatment, carries a seed of fear that it will come back. In the case of breast cancer, for 70-80 percent of people treated for early-stage disease, it won't come back. That is the good news.

Yet living with uncertainty is one of the greatest challenges of the survivor. Fear is powerful. Like so many things in life, however, when the most-feared thing does happen, it is nothing like we imagined. We are nothing like we imagined ourselves to be. We are more. Our loved ones are more.

When the most-feared thing does happen, at least for me, what emerges is a strange and unexpected hope, which evolves as we learn to live with our new reality. Hope, like mortality, becomes specific rather than abstract. It becomes multiple. It becomes attainable.

As October, so-called Breast Cancer Awareness Month, approaches, many of us with metastatic (aka terminal) disease brace ourselves for the pink ribbons, reminding us that we live with an aspect of breast cancer no one wants to focus on. We are the 20-30 percent whose disease evaded current treatments, despite our best efforts (and our health care team's), our attitudes, our lifestyles, our hopes. Breast cancer, we now know, is not one disease but many. Some types are slow growing; some are aggressive. Research is moving in the direction of each person's cancer being treated as a unique entity, and hopefully, the next 10 years will bring more and more people into the ranks of long-term cancer survivors. But for now, for today, despite our terminal diagnoses, even while we are dying, we are alive, surviving, evolving, learning, grieving, and sometimes even thriving.

I share the following personal scouting report because a terminal diagnosis can set a person apart in a culture that turns its gaze away from death. And yet increasingly, our culture seems to be changing, which seems wise, considering death is an integral aspect of life. In Homer last week, a panel discussion on Atul Gawande's recent book "On Being Mortal" was well-attended. That book, in which a doctor squarely faces his own fears of death, and the consequences to his patients, is a national bestseller. "Death Cafes" are springing up in many cities. As a person with a terminal diagnosis, I have lived the pain of turning away from and rejecting the idea of my own death, and I have lived the surprising hope of turning toward my own death with curiosity, openness, sadness, wonder, and yes, fear. I have learned many things along the way, and it's in that spirit that I share this writing with other mortal beings.

May 2013: When what I feared most came to pass

Wherever there is spring on earth, it's associated with rebirth, with youth, with new life. When what I feared most came to pass, it was spring. Cancer was reborn in me as life was reborn in the earth. More likely, reborn is not the word, but reawakened. It had been dormant, like a crocus bulb, like a fern rootstock, for two and a half years. Life poses unanswerable question after question, and one of mine is, why in spring? What could it mean? The first time, and second, why did my death step forward in spring like the young moose that haunted our neighborhood that April, newly rejected by its mother, who was pregnant with the nervous yearling's sibling?

It was a cool May in 2013 in Homer, Alaska. Everything was late — the leaves, the flowers — and rain alternated with snow or hail, alternating with sun, sometimes all within a single hour. I took to writing in our greenhouse while weather happened outside. I wrote in the company of the flower starts I'd replanted in the hanging baskets and window boxes that would decorate our deck once it warmed up. No leaves yet on the birches surrounding our house, just a little unfurling green on the elderberry and gooseberry bushes, and on the moose-chewed May trees. In that humid, light-filled, earth-smelling shelter, it was warm and enclosed, but I could still hear bird song. It was all around, the birds really going at it despite the weather, building nests, chasing off intruders into their territories. So much to do in the short sub-arctic summer, and they were doing it.

The greenhouse was one of the places I felt most at peace in my growing physical unease, along with the quiet beach I walked to town sometimes, or the forest and swamp boardwalk trail down the road. The greenhouse reflected the Latvian peasant in me, the simple old summer dachas of my friends in Latvia, my father's style of patched-together workmanship. My window boxes were made of unvarnished, graying scrap lumber. The table holding the long boxes of nasturtiums was built out of sway-backed plywood supported by six defunct tires.

I started keeping a book in the greenhouse that spring, and I'd sit in a folding chair after planting seeds or weeding the window boxes and read at random from it, and then pick up my computer and write. By now, that book is swollen with moisture, a few of its pages stuck together. The book contains writings and thoughts and poems of Stanley Kunitz, a poet who was a meticulous New England gardener. It's called "The Wild Braid: A Poet Reflects on a Century in the Garden".

Kunitz died at 101, and when he wrote the book, with the help of a friend, at 100, he was still gardening (and still writing poems). Having come out of a nearly fatal illness, the 99-year-old told a friend, "Ahh, I feel I've gone through a whole transformation . . . it's a sense of being in control of your world, and going where you want to go . . . A feeling of power instead of feeling a victim." The photos in the book show opulent gardens of his Provincetown, Massachusetts, home, Victorian spillover gardens of anemone, foxglove, bearded iris, things we only dream of up here in the north, at least until climate change alters our winters sufficiently. And yet I did dream of them that spring, dreamed of a poet's flower gardens, and my mother's flower gardens, her primroses and tulips, her roses and lily of the valley, her wild trillium transplanted from the woods near our childhood house, her rock garden plants, her mums. See, while my father was a child of peasant farmers in rural Latvia, my mother was the child of upper middle class town dwellers, and I am made of both of them. The funky greenhouse is my father in me, while my desire for lush flower beds is my mother in me. My plan that spring was to consolidate my widely spread-out perennials, which bloomed in one mainly purple exuberance in spring and toppled into disarray, overtaken by chickweed and nettles by mid-summer, into just a couple beds I could actually nurse along into something like order. Perhaps if I contented myself with less, I thought, something opulent and lush would grow up in that more intimate space, would bloom on into fall.

At the same time I sought the comfort of the rustic, non-opulent, funky greenhouse with its piles of pots, its rough-cut lumber beds of soil my husband Craig dug from under the elderberries. He'd hauled the dirt from the thicket in salvaged five-gallon pails repurposed for tomatoes, and I'd 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 kept the young plants warm at night, as the temperature still dipped down into the 30s. I'd been calling it a recalcitrant spring, and in town you heard a lot of moaning. When I considered the temperature in the landscape of my youth, in western New York, where my mother had gardened, I truly felt like I was orbiting some other, shyer sun.

In the greenhouse, there was earth but also words. In the greenhouse I was not only having a conversation with my own blank pages, but with everything going on outside me, even with the planes that took off from the Homer airport and headed to Anchorage, and also with "The Wild Braid". At 100, Stanley Kunitz 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.'"

Totally present

It had been for me rough patch physically; I'd felt oddly in my body, much as I had during chemotherapy three years before. 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 had been interrupted. I'd stopped running, then stopped climbing hills on walks. I'd been misdiagnosed with various afflictions, as the doctors ruled out the simplest explanations, the not-cancer options falling and falling away, one by one.

All the while, that young moose snorted in the elderberry thickets, bolted at my car driving up our road, its hackles raised. When I'd roll down the window to speak reassuringly, it glared at me, flour-scoop ears laid back, eyes white-rimmed. I kept my gaze focused on the up-close. I held myself steady, focused on what my body could still do. I walked a 2-mile swamp trail, pausing at every bench to catch my breath. I watered plants in the greenhouse. On sunny days, planting seeds in the garden, I lay down to rest on the black dirt of the paths between beds. Something in me said be totally present, so I tried.

In my journal, I struggled to find the meaning in feeling so lousy for months. Since cancer treatment, writing had been so much about finding meaning, on telling a coherent rebirth story. But something shifted in the greenhouse when one afternoon I read a paragraph of "The Wild Braid": "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 was plain to me. It was bigger than the ongoing conversation I held with my body, with my fear. The conversation manifested as the rhythm of the rain, which waxed and waned, and as bird-spats among the robins, the fox sparrows, the varied thrushes, and humidity and the smell of damp, rich soil. No matter what was happening in my body, I could be part of that conversation, and that conversation included birth and death and desire. Especially desire.

"'Desire,'" wrote Kunitz, "is one of the strongest words in the language, which is why . . . as I look back on it, the very sound of that word is a cry." I heard that cry, though I couldn't decipher what my body was telling me or translate it into language. But the earth knew. The young, agitated moose knew. The rain knew, the birds knew, and so, when I look back on it, I knew too. It was what I had feared most, and it was happening, but the way I had imagined it was nothing like how it was happening, so I didn't recognize it. I was planting seeds. I was writing in the greenhouse. I was reading the words of a very old man and relating to what he was saying. All of the things I'd accumulated in my life, the furniture, the sentimental rocks, my mother's tea cups, the rows and rows of books, the knowledge, the clothes, the telephone, felt a world away, even though they filled our home, just up the driveway from the greenhouse. All I needed was a cheap canvas chair, the songs of birds, a shelter from the rain, the life of plants I'd tended from seeds, the dirt under my fingernails, one book open in my lap, and connection with the humans and creatures I loved.

A strange relief

And when the actual day came, the day I knew with my brain what the earth had been telling me, that what I feared most had come to pass, it came first as words. Though I'd long imagined and feared receiving those words — words like recurrence — when they came, it was nothing like I'd imagined—that is, after the delivery of the news, which came for the most part as expected, as foreign language, the lexicon of disease and medicine followed by the familiar language of sorrow. The news came by way of the telephone, the specific language of one particular disease delivered by my doctor, news of the specific breast cancer inside me, my cancer. Adenocarcinoma of the breast. Malignant pleural effusion. Metastasis. I am sorry. I'd lived long enough to know that what our minds invent out of the tendrils of our fears— those mental inventions bear little resemblance to the real. I had imagined falling to my knees. I had imagined myself curled up in terror. I had imagined my heart galloping out of my mouth. I had imagined a sensation of falling, even of failure. I had imagined hope flushing out of my body and running off, the way too-early rain on still-frozen earth rushes across the ground, leaving behind a dangerous ice sheen that can be mistaken for wetness.

After I hung up the phone, I sat for a moment at the kitchen table, staring out at the bare birch trees. I gave myself over to the rush of breath like rain that carried me past the doctor's words and into the next moment, and that moment was the Earth, where rain goes when it finds its way past an obstruction. It goes in. It finds that way. I felt a strange relief.

Then, I gathered my words, "Craig," I called to my husband, "Craig, come here."

"What's going on?" he said, walking downstairs, walking to where I sat at the kitchen table, my head now resting on my arms.

"It's the cancer," I said. "The cancer's back." And I broke down then. And he sat heavily down beside me as the words closed in.

When what I feared came to pass, for awhile that day, it seemed that Craig and I had been ushered onto a tiny boat, maybe the size of a rice cake, and pushed off shore by an indifferent stranger. A current soon carried us far into a fog. We clung to each other. We stared for hours into the fog, not seeking anything solid, 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 most came to pass, for hours, Craig and I sat in the living room, staring out the window. At one point I thought, and tried to say what I never imagined I'd say, after receiving such news: I've been given a heaven on earth. I've lived in paradise. I've had everything. There's nothing I want, nothing I'd change, nowhere I'd go. My desire was for more of what I'd been given, more forest garden stream melt poplar-bud crane thrush mud puddle nettle moss waterfall. It overran itself, my desire. My desire brimmed like water up against an ice dam. My desire felt dangerous.

When what I feared most came to pass, Craig and I dragged an old quilt and the comforter and pillows from our bed into the backyard. It was a warm afternoon by then. We lay the quilt on the ground near the garden and covered ourselves with the comforter and held each other and listened to the birds nattering on in the leafless forest canopy, listened to what would continue on with or without us.

In the evening, I knelt in the garden and planted tarragon. I looked at the spindly starts and thought, creation. I thought, faith. So blind, so foolish. I went to the greenhouse. I watered the tomatoes. I stared at the baby green of their hairy leaves.

"This is all we have, right now, right here," I said to Craig. I knew everything I'd read of Buddhism to be absolutely true. There is no future. There was only the salad Craig made for me; there were my lungs, freed of the malignant fluid that had been gradually choking me, drained by doctors a few days before, 3 liters of swamp-water-colored fluid that had filled three glass bottles. There were my lungs, now filling completely with breath. I experienced a grace-of-only-the-moment in the moment and then the moment passed into another. And what I feared came and kept coming, and its form kept changing.

Peddlers of hope

When what I feared most came to pass, I emailed my oncologist in Boston, where I'd been treated two years prior, with the news of my pathology results. Dr. Schnipper called me, told me it was a time for courage and hope. Oncologists are peddlers of hope, someone said, cynically. Yet I trusted Dr. Schnipper, who'd worked in the field for decades, whose own wife was a two-time breast cancer survivor. I bought what he peddled. And because I trusted it equally, I listened to the earth, to the voice of spring, and it spoke of a hopeless hope. The lives of birds are short and furious. They seemed to be singing of my impending losses, all the things mine only for the moment. I took a hike with my stepdaughters, one of them five months pregnant, and we headed up a trail through wet, brown meadows, and wherever I spotted a bracket fungus clamped to a tree within reach, I scratched the word "hope" or the word "faith" into its underside with my fingernail. I hoped for the moment I was living, that was all; that was enough.

On the cover of "The Wild Braid", Stanley Kunitz wears a blue and black plaid flannel shirt and tan corduroy pants. He leans over to inspect some ferns and petunias, yet one can see that his back, even when he's not leaning over, is bent forward. Like a peony heavy in its late flowering, gravity draws his head and heart toward the earth.

When breast cancer comes back, it is incurable; it is terminal. What is healing, what is spring, in that context? What is hope? Spring is not an end-point; neither is fall. They are part of a round. No two springs the same; different birds arrive to nest, different moose stalk the edges. Nature is contingency, not progress. Change is the only unchanging variable. Healing is a labyrinth, not a restoration project.

As I lived forward from the day when what I feared most came to pass, people would sometimes call me brave. A woman would say, "I'm so impressed with how you keep doing things, living life," and I felt my hackles rise. What alternative did I have? Start to dig my own grave in the deep soil of the woods behind my house? It seemed at times, a linear question I had to answer, for how to move forward: plan to live, or plan to die? It took two years of living with metastatic cancer to recognize there was no difference, to recognize that living is not separate from dying. It is not yet time to dig a grave, but time to wander the woods, seeking a good site. It is time to gather all I love most around me. It is a time, as always throughout my life, to write. A time to remake the flower beds into something I can tend. A time to redefine the word "hope."

"We have storms and stresses and positive indications and negative indications that affect us every day. Each of us is a very sensitive keyboard," wrote the 100 year-old gardener, the poet, stooped there among his flowers, standing between being here and not being here. So sensitive that a molecule of compost scent could spark a poem. He wasn't without fear. And when what he (we) feared most came to pass, in the absolute, mortal instant, I pray it was beyond anything he imagined.

Eva Saulitis is the Homer-based author of four books of nonfiction and poetry.