Collecting bottles, tossing leftovers, taking out the garbage
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I’m writing this next to a stream in Hawaii, where my husband and I spend a few months each winter to escape Alaska’s darkness and cold. The stream originates on the slopes of Kohala Mountain, an extinct volcano, the oldest of five volcanoes that form this island. Less than a mile from here, the stream pours from a lava tube and plunges fifty feet into a pool before heading seaward.
The sound of water has always comforted me, especially fresh, shallow water rushing over stones. I grew up in western New York, in a small town bordered on two sides by creeks that cut deep gorges into the landscape before emptying into Lake Erie. I waded in and skated upon and hiked up and down those creeks all through my childhood. After college I took a job at a remote salmon hatchery on an island in Prince William Sound, Alaska. There I met my husband, Craig, a commercial fisherman and orca biologist. I volunteered on his research boat and, once I’d earned my master’s in biology, became his colleague. We lived on his boat for several months out of the year, counting orcas and humpback whales. Finally we became lovers. I helped him raise his three kids, and every winter he brought us all here to Hawaii, to this piece of land on the wet, windy north coast of the Big Island.
I was reluctant to come here at first. I have a northern soul and prefer a snowbound landscape. The harsh sun, the insects, and the barren fields of lava rock initially felt hostile. But this place drew me in. Now, after fifteen years, the kids are grown, and I’ve come to love this island. Hawaii has mostly been subdued by human habitation, but there are still pockets of wilderness, like this one. A trail from our land leads to where I’m sitting on a tablecloth beside the stream with my laptop. When I look at my computer screen, I see my reflection, in which my bald head is hidden by a scarf. I’ve had no hair for six months now, a constant reminder that I have breast cancer.
It started in 2010 with a dull ache in my right breast that I blamed on strenuous yoga. I found the lump one morning, lying in bed with Craig. The moment my fingers touched that hardness where softness should have been, I knew, but I pushed that knowing back under. There is no history of breast cancer in my family. I have none of the risk factors. I’ve always been healthy — so much so that, though I was in my mid-forties, I didn’t have health insurance or even a primary-care doctor.
I shook Craig awake and asked him to feel my breast. When he couldn’t find the lump, I repressed my fear for a month longer, until I saw swelling above my nipple. I was on Cape Cod visiting my sister, who’s a doctor, and I asked her to check the spot. I lifted my shirt, unhooked my bra, lay back on her couch, and watched her expression change as she pressed and circled.
The standard treatment for cancer that’s invaded the lymph nodes, as mine had, is brutal: mastectomy, chemotherapy, radiation, hormone therapy. It’s an attempt to eradicate all traces of the disease, every possible errant cell. Craig and I decided that the best place for me to be treated was Boston. In Massachusetts I could get health insurance despite having a preexisting condition, and I could live with my sister and be under her care. I stayed on Cape Cod for eight months, through a hot and humid summer and a stormy fall. I had my breast removed. I sat in a recliner while toxic drugs dripped into my vein. I lost every hair on my body. I was zapped with radiation. After my final appointment Craig and I boarded a plane for Hawaii. There, my radiation burn faded, my body regained strength, and my brown hair began to grow back as pure-white fluff. Before I flew home to Alaska, I dyed it red. My friends there hadn’t seen me in a while, and I didn’t want to look as if cancer had aged me three decades in twelve months.
In the years that followed, Craig and I tried to heal, each in our own way. I worried the cancer would come back; he insisted I was cured and doggedly believed that we could resume the lives cancer had interrupted. All that summer, while I’d been living with my sister, he had flown back and forth between Boston and Alaska, planting our garden, filling our freezer with fish for the winter, and carrying on our whale research. He’d kept our life intact as though it were a painting and I could, once treatment had ended, slip back into the picture.
When my cancer returned after two and a half years, it was not in the usual way. It made itself known as water: a fluid that wept from tiny lesions and filled the lining of my right lung, collapsing it, as if to drown me. For months my oncologist tried the least-debilitating treatments available to get the cancer under control, but it was only the barely tolerable cocktail of Taxol and Carboplatin that finally stopped the fluid accumulation. After my first dose my hair began to thin, then fell out in clumps. When I bent over and rubbed my head, it rained down on the floor. Craig wrapped a towel around my shoulders and shaved off what was left with his razor.
The cancer this time is metastatic, stage IV. There is no stage V. According to the literature, the median life expectancy for someone with my diagnosis is three years. This is no longer an interruption in our lives; cancer is a defining feature. I’ll stay on the severe treatment as long as it works, or as long as I can stand it. (Eventually metastatic breast cancer outwits every drug or else outlasts the patient’s tolerance for the therapy.) A bald head is seen as a mark of cancer, but really it’s the mark of the harsh drugs that kill all fast-growing cells, including those of the hair, skin, membranes, and nerves, which together form our bodies’ defenses. A bald head is a sign of vulnerability. And it is proof of the lengths to which many of us will go to survive.
Now, after four months of Taxol and Carboplatin, I have lost my eyelashes and eyebrows, too. This gives my face a vulnerable yet craggy look, emphasizing the ridge where my brows used to be. I admit to studying myself daily in the mirror, wondering: Do I look older? (The last time I lost my hair, people mistook me for my sister’s mother.) Does the absence of hair unsex me, or does it make me look chic, like singer-songwriter Sinéad O’Connor? No. A bald woman without eyebrows or eyelashes does not look like Sinéad O’Connor. She looks like she has cancer.
But it’s only hair, right? Hair is worth giving up to save (or prolong) your life. It’s the least of what’s at stake. So why is it one of cancer’s most profound losses? According to one study, hair loss has a greater psychological impact on women with breast cancer than the loss of a breast. The authors of another study call chemo baldness “a form of disfigurement that can affect a person’s sense of self and identity.” It’s impossible for me not to absorb the phrase a form of disfigurement, though everyone in my life would argue against it.
The first time around, before the cancer had spread, the nurses were quick to tell me that my hair would grow back. They didn’t say it would grow back unrecognizably white, curly when it used to be straight, and finer than before. They didn’t say that if my cancer recurred, and I lost my hair again, it might grow back thin and patchy. They did advise me to shave my head preemptively, to save myself the trauma of those clumps clogging the shower drain.
Though no one spoke to me of ritual, in the waiting area of the oncology unit a glass case displayed a bird’s nest woven from a patient’s hair. The accompanying text told the story of how the woman had collected her fallen hair from the drain and sprinkled it around her yard, and the next year her husband had found the nest.
What is it about hair and our sense of self? Hair is only dead matter. But it’s part of the body, along with flesh, bone, and blood. We meet the world via the body, and the world responds to what it sees. When I was a teenager, a teacher fixed his gaze on my breasts, which caused me to curl my shoulders inward, something I still do. One friend, when she sees me in that pose, tells me I look like a cormorant. On Cape Cod I’d often spy those slump-shouldered water birds roosting on a dead tree, and I’d instinctively straighten my posture. Another friend once told me I looked like Helga, the strong-bodied woman who had posed for Andrew Wyeth’s paintings. We were skinny-dipping in a pond when she said it, and I saw myself differently after that. Since my cancer returned, I have lost so much weight that my curves are gone and the bones of my face are prominent. The last time I visited my sister, who is very thin herself, she said, “Now you have chicken legs like me.”
A long time ago I cut my hair short, and several male friends expressed dismay. A long time ago a man asked if he could bury his face in my hair. Not so long ago Craig came up behind me as I sat at my writing desk and nuzzled my bare neck and head. My self-consciousness around him, at least, eased up after that.
It’s suddenly cloudy. I look up the slope to where, legend has it, there’s a buried locomotive from Hawaii’s sugar-cane-plantation days. I imagine I’m not the only woman who’s sat on this bank, listening to this stream, hoping for some sort of solace or relief. During the last century Chinese, Japanese, Portuguese, Korean, and Filipino immigrants came to this place to work in the cane fields. Perhaps one of them brought a body stricken by illness to this stream.
The other day a friend and I were sitting beside the stream, and she told me she was leaving her husband. She used to visit this spot with him on hot days to lie in the water. She also told me there are places on the island where groves of trees survive in the midst of lava flows. Hawaiians call these stands of green trees kīpuka. They say a kīpuka is an “oasis saved from Pele’s embrace.” Pele is the volcano goddess, the goddess of fire.
I’ve come to this stream alone today to find a kīpuka — a refuge — after a distressing incident. Yesterday I panicked because I thought I might need another blood transfusion. My every-three-weeks chemo sessions shut down my bone marrow so that, at some point between treatments, it stops producing blood cells entirely for a few days — a period called the “nadir.” That’s when my body is most vulnerable to anemia or infection. The longer I’m on the treatment, the more difficult it is for my bone marrow to recover, and the faster I become anemic. By now I need blood after every other chemo session. I’ve learned to recognize anemia’s signs: I’ll feel more winded on my walks, hear the telltale rhythmic shushing of blood in my ears at night, and wake with a headache in the morning.
Receiving bags of a stranger’s red blood cells through a port implanted in my chest has become a routine necessity. I love to watch the blood glide down the tubing — so dense it resembles not so much a fluid as a liquefied vital organ. After a transfusion my head clears; my muscles stop aching; I can hike for miles and miles.
So when I felt anemic yesterday, I barged into Craig’s home office, where he was working at his computer, and said, “We have to go. To the hospital. Now.”
Craig asked if I could wait. He had a grant proposal to review, and later our friend Karl was coming down with his wood chipper; if Craig canceled, the mess of trimmed branches in our driveway would have to sit there for another day. He sounded annoyed.
I’ll admit I want Craig to live up to the myth of Noble Caregiver, even though I know this myth, along with others that tell cancer patients how everything should be, is destructive. In my version Craig jumps up from his desk and asks, “What can I do?” He’s gung-ho. He’s superpositive. He rises — briskly, cheerfully — to every cancer occasion, or else he stands at the ready with a cool washcloth, a bottle of antinausea meds, and an empathic expression.
That’s not my husband. Craig does rise to every cancer occasion, but he doesn’t always do it briskly or cheerfully. He keeps one foot in the caregiver world and the other in regular life. He sees his role, in part, as maintaining normalcy, especially in regard to our work in Prince William Sound. He schedules our research trips around my chemo infusions so that I can still go. Last year he brought me to the sound even though cancer had begun growing in my abdominal lining, and my abdomen was slowly filling with fluid. When we got back to town two weeks later, I looked like I was pregnant, and I had to head straight to the hospital to be drained. Craig is there beside me for hours when I receive chemo, his laptop perched on his knees, his cellphone pressed to his ear. But when the bag of Taxol or Carboplatin arrives, I have to interrupt him and ask him to place his hands on the plastic pouch with me and burn our desire into that poisonous, life-giving fluid: Kill those motherfuckers.
In my clearer moments I remember that Craig needs time to adjust to changes in plans — and in our lives. He always has. I remember how he initially refused to believe I had breast cancer. When the biopsy results came back, and the pathologist told me I would lose my breast, I called Craig. By that point I had been through a week of scans, exams, and procedures. I had left our precancer life far behind, and I asked Craig if he was ready to leave it behind, too. “Shit,” he said, and then he said yes. That night Craig, an agnostic Buddhist, lit candles and prayed.
After my first treatment ended, Craig was often frustrated with me for not trusting that I was cured, for living in fear. But when, two and a half years later, my doctor called to tell me the cancer was back, Craig put his arms around me and wept. Then he helped me drag quilts and pillows outside. It was early June, but it had been a cold spring in coastal Alaska, and we hadn’t even planted our garden yet. The leaves were just unfurling in the birch forest surrounding our house. Craig lay down with me on the cold ground. We covered ourselves with the quilts, wrapped our arms around each other, and stayed there until we fell asleep.
Cancer has made no saint of Craig, or of me. We fight; we nag; we irritate each other. Once, in a rage, I flung a broom across the kitchen table, barely missing his head, and then we both laughed. Our disagreements are passionate but brief. Yesterday was no exception. Angry at Craig for being annoyed, I reminded him that he knew we’d be driving to the hospital sometime this week for a blood test; he’d just forgotten. He began stomping around, suddenly needing to fry himself an egg. I left in a huff and drove to the hospital alone.
Twenty minutes into my drive, Craig called and apologized (as he always does) for reacting badly (as he sometimes does). I forgave him and said that I was sorry, too. But then I noticed a big truck tailgating me, unable to pass on the narrow mountain road, and the anger I’d felt toward Craig flooded back. I refused to pull over and let the truck go by. My rage had nothing to do with Craig, nothing to do with the tailgater, and everything to do with cancer.
© Jon Kral
To me cancer has always been red, like fire. The day before my mastectomy, I went walking on a remote Cape Cod beach with my new friend Lauren. She’d been through breast cancer nine years earlier and had lost a breast. At times that summer I felt as if I were being initiated into a secret society, with Lauren as my guide. As we made our way over a dune, I almost stepped on a pocketknife half buried in the sand. It had a red plastic handle. Lauren laughed. “How perfect,” she said. “You should keep it.” I packed the red-handled knife in my overnight bag when I went into the hospital for surgery, as though that blade could fend off my cancer, as though it could protect me.
Lauren was diagnosed with a second breast cancer a year after I finished my treatment in Boston. When I told her how scared I sometimes got, she asked me if my fear was covering up anger. Rage, if held in, feeds cancer, she said. She advised me to go deep into the woods and scream. I tried but was too self-conscious, afraid someone would hear — or perhaps afraid I would hear myself.
My acupuncturist in Hawaii says cancer is fire, and so is chemo. So having chemotherapy is fighting fire with fire. Kīlauea Volcano erupted recently, driving people on the other side of the island from their homes, burning up acres of forest, and making roads impassable. This winter the creeping lava has caused the evacuation of an entire town.
The volcano goddess, Pele, is known for her rage. Tourists are told that the price for removing even one tiny chunk of her body from the island is bad luck, but they take lava rocks home anyway. Then, when they suffer some ill fortune, they mail the rocks back.
When I look around me, everything seems fragile: This stream, threatened by the diversion of water for agriculture. The native vegetation, threatened by invasive weeds. My relationship with Craig, my identity, my hold on this body, on this earth — all threatened by cancer.
For two years I’ve thought almost daily about dying. I have imagined my death. I’ve talked about it with Craig, my sister, my stepkids, a therapist, and a palliative-care nurse. I have read books about dying. I have written a description of how I want and do not want to die. I have watched salmon die in the creeks in Prince William Sound and have been reminded that death is not always a tragedy and can be natural and right and even beautiful. I have done all this, but the vulnerability of my body, the tenuousness of my life, still sometimes overwhelms me. On my better days I think about all I’ve been given during my fifty-two years on this earth, and I tell myself it’s enough, but on days like today I’m not ready for my life to end.
In the hospital yesterday, as I sat in the blue chemo recliner waiting for my blood-test results, a lab tech said to me, “Good afternoon, sir.” I looked at him, startled, and he realized his mistake. “Sorry,” he said. “I meant ‘ma’am.’ ”
Writer Susan Sontag noted that humanity seems to inhabit two separate kingdoms: the kingdom of the well and the kingdom of the sick. There are moments when I feel especially aware of this divide: When I’m pushing an IV stand. When I’m tethered to a pump. When I’m clad in a hospital gown. When someone reminds me of my baldness, and I realize that my private travail is impossible to hide. In a coffee shop recently a woman spotted me, swooped in, and whispered in my ear, “Are you a survivor?” I’ve had casual acquaintances ask if I’ve had a mastectomy; a woman fitting me for glasses inquire about my prognosis; a stranger at the beach say, “You must be living each day to the fullest.” Another stranger asked me if I was bald “on purpose,” and when I said no, she told me about a machine that could cure my cancer. In each encounter the illusion that I have a private identity is shattered.
Until I lost my hair, the self I presented to the world seemed malleable. With my laptop or journal in a cafe, I was a writer. With my black motorcycle boots and skinny jeans, I was a hipster. With my Carhartt work pants and rubber boots, I was a mariner. With my athletic shoes and sweaty T-shirt, I was a runner. With my briefcase and piles of books and papers, I was a professor. Now, above all else, I am a woman without hair, a woman with cancer.
Still waiting for my test results, I sent a text message to my sister joking about how the lab tech had called me “sir.” I included a photograph of myself with the text. When I studied the photo later, I saw that I looked neither masculine nor feminine. Lit by hospital fluorescents, with no bangs to soften the angles of my face, no lashes to decorate my eyes, and no eyebrows to raise ironically, I looked tired, depleted of color and vitality. Some mornings I can rub a layer of skin off my face in the shower. Chemo is extending my life but at the same time draining it.
I learned from the blood test that I wasn’t yet anemic enough to need a transfusion. I should have been relieved, but instead I felt unmoored, unable to shake a sense of exposure. In the health-food store afterward, I was excruciatingly aware of being seen as a person with cancer. I avoided eye contact in the narrow aisles. In the checkout line I imagined the woman behind me was scrutinizing my purchases: I should have been buying something nutritious, like kale, instead of coffee and cookies.
On the way home I listened to a BBC story about discrimination against Muslims in France. A mother described how she was not allowed to chaperone her daughter’s school trips because she, the mother, wore a hijab. (In her culture it is hair, not baldness, that women must conceal.) When she dropped her daughter off at school, the mother had to remove the child’s head scarf and send her into the world with her hair exposed, shorn of her Muslim identity.
I was making too much of the lab tech’s misperception, I knew, but I kept telling the story — to Craig, to our friends. I kept texting wisecracks to my sister about it. I put on Craig’s baseball cap and his button-down shirt (which makes me appear utterly flat-chested) and posed for the camera and sent the picture to her. I wanted to be the kind of woman who could laugh off such an incident. I didn’t want to be the oversensitive type who grieves something as superficial as her looks. But that’s part of who I am.
This morning someone posted a video on Facebook of two young women salsa dancing. They were sexy and completely at home in their bodies. Before I saw those dancers, I’d thought I was over being called “sir,” had added it to my collection of peculiar cancer anecdotes. But the video unsettled me. I’m a self-conscious dancer. I’ve never inhabited my body in that fashion. I wouldn’t say I’m nostalgic for my twenties — I like being fifty-two — but I was envious of those women’s relationships to their bodies, of the easy way they moved together, of the way their dance communicated a message people want to hear: life, not death.
I’ve decided to move from the stream to a spot along the rocky beach. I find a patch of shade under some overhanging shrubs and look over my shoulder to make sure I’m alone. (Why? No one ever comes here but me.) Only then do I pull off my head scarf and sit cross-legged and feel the cool wind on my bare scalp.
I write for a time, but the heat drives me down to a tide pool to cool off. Crouching on a boulder, I cup my hand, scoop up water, and pour it over my head. At the pool’s bottom, zebra blennies camouflage themselves in the sand. Two whelk shells slide along, inhabited by tiny orange hermit crabs with iridescent bands of blue. Sea urchins that look like purple pincushions slip down the rocks inch by inch. I lose myself in all this underwater activity until the hot sun drives me to pour another palmful of water over my head.
Am I baptizing myself? If so, into what faith? Not one involving miracle cures. I’ve known too many good people who’ve died of cancer despite a chorus of prayers. Still, I often indulge my childhood impulse to pray. And though I’m no longer the devout Catholic I was in high school, our house is filled with altars. A shelf affixed to a wall in our kitchen holds a stone Buddha, a bronze cross, a Virgin of Guadalupe candle, a one-breasted clay figure, and an incense holder. A kitchen windowsill displays an ever-changing arrangement of bones, feathers, rocks, and shells. A low table in our meditation loft is crowded with crystals, Russian Orthodox icons, and objects given to me by friends and family since my diagnosis. On a windowsill in my writing studio are a pair of white ptarmigan wings framing a photograph of my mother. Perhaps because I’m a biologist, my deepest spiritual impulses feel biological to me: bodily, earthly. They arise not in a church nor on my meditation cushion but when I’m alone in a wild place like this.
The wind plays across the sensitive skin covering my skull. The loss of my hair is a reminder not only to others but also to me that I’m mortal, a temporary inhabitant of this earth. It’s a reminder that the cancer that has taken so much — my breast, my lymph nodes, my hair, my femininity — will take more.
I came here to be alone, but really I’m surrounded by living creatures: scaly, feathered, two- or four- or six- or eight-legged, or with no legs at all, like the pair of humpback whales diving just off the headland. I have spent my thirty-year career observing both humpbacks and orcas. The most satisfying moments have come after Craig and I have put away our cameras and hydrophones, shut down the boat’s engine, and let ourselves drift. We watch the whales pass us by and disappear. They are a mystery, unknowable, despite all the tools of science we bring to bear on studying them.
Why do I wear my head scarf? What am I ashamed of? The breeze on my head at this moment is sensuous. Here, where no one’s watching — where, most important, I’m not watching — I am simply a being among other beings, each of us strange in our own way.