Collecting bottles, tossing leftovers, taking out the garbage
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I’m convinced the most accurate way to gauge your survival odds when you have cancer is not by the size, type, or grade of the tumor but by the size and splendor of the tropical-fish tank in your doctor’s waiting room. If it’s over thirty gallons and stocked with anything neon, you’d better start wondering why they want you so calm.
When I went in for a mammogram to investigate a lump, a fish tank as big as a coffin stood gurgling in the middle of the waiting room. In it, lemon-yellow and cobalt-blue fish darted around spiky faux coral. Near the tank sat women who, like me, had changed into front-tying hospital gowns. Two older women chatted about winters in Florida. A young mother called home with instructions for dinner. In one corner a flat-screen TV looped a show about home makeovers.
I was forty-nine years old. A few months prior I’d felt something in my left breast, a squishy mass like an overripe grape sloshing in its skin. But when I searched for it again, I couldn’t find it. This went on for several weeks. Each time I couldn’t locate the mass, it seemed excuse enough for me to thrust fear out of my mind. My strategy was the same one I used with my neighbor’s obnoxious dog: no eye contact, no sudden movements, and if it ran up barking, just ignore it.
After two rounds of X-rays the technician told me the doctor wanted to do an ultrasound and led me to an exam room. I leaned back on the table and told myself not to worry. Dr. Z. came in, confident and calm, like the airline pilot who drawls about “a bit of turbulence” as soda cans rattle on the beverage cart. She smeared a cool gel on my left breast and ran the ultrasound wand over it. A grainy black-and-white image moved on the monitor in time with the wand crossing my chest. Then Dr. Z. held steady over what appeared to be a black clump. It looked hairy, like something you’d pull out of a bathtub drain. The exam-table paper crinkled under me as I shifted to get a better view.
I knew it was cancer.
Dr. Z. all but confirmed my fear, saying she was 95 percent sure as she pressed the pads of her fingers into the side of my left breast. “It’s odd,” she said. “I feel something for a moment, and then it slips away. We’ll need a biopsy to confirm.”
She told me she could do the biopsy right away, or I could make an appointment for another day.
“Now,” I said. Why delay?
Dr. Z. injected an anesthetic into my breast, then used a handheld device to punch out five tissue samples. Anesthetic or no, I could feel each bite. After she’d finished, the assistant walked me to a consultation room.
Against one wall stood a table covered with pamphlets and books about cancer. This is the room most people don’t see, I thought. Dr. Z. entered and showed me the X-rays. It scared me to look at the tumor, as if seeing it made it more real.
“You’ll get through this,” Dr. Z. said.
Her eyes filled with tears. This could probably be considered unprofessional of her, but I was grateful for the human response. Dr. Z. talked about surgery, chemotherapy, and radiation while I noticed that the pamphlets on the table were of the same trifold design as the takeout menus at my local pizza joint.
After leaving the clinic, I went to my local bookstore and purchased Dr. Susan Love’s Breast Book, marketed as “the bible for the newly diagnosed.” Then I went home, where everything was oddly unchanged: The same house sat on top of the same hill in upstate New York. The flower bed still needed mulching.
In those days I lived with Don. We’d bought a house together on land where red foxes ran across the yard and wild turkeys strutted up to peer through the sliding glass doors. The day of my diagnosis I came home toting Susan Love’s book and found Don on the bed, dressed in his usual black jeans and T-shirt, reading a computer-programming manual.
“I have cancer,” I told him. “The doctor was 95 percent sure. They did a biopsy. I’ll know in a few days.”
I was sorry to deliver such alarming news, but I was also glad for Don’s steadfast presence.
“We’ll deal with it,” he said.
When we’d first met twenty years earlier, I’d been attracted to Don’s lean hiker’s body, his curly hair, and his nerdy love of math. He was a software engineer from Ohio. Coming as I did from an emotionally expressive Armenian family — when I sneezed in New York, my mother in California reached for a tissue — I’d found Don’s Midwestern reserve refreshing. But lately I’d wanted more excitement, and he’d wanted less drama. That’s where the relationship stood when I got cancer.
Still, throughout the year, Don would go with me to every doctor visit, every chemotherapy infusion, every surgery. Before each appointment we’d prepare lists of questions. During each visit he’d take notes and ask follow-up questions. Afterward he’d type up the notes.
The letter read: “Dear Ms. Salibian, I am very sorry to inform you that your biopsy result confirmed that the abnormality in your breast is a cancer. As we discussed, please contact your referring physician for the name of a surgeon.”
The pathology report indicated I had invasive ductal carcinoma, meaning the cancer had spread out of the milk ducts and into the breast tissue. It was moderately aggressive. The tumor was also estrogen- and progesterone-positive, meaning it fed on those hormones.
Why did I get cancer? Was it environmental toxins, unhealthy living, bad genes, bad luck? I decided not to drive myself crazy with such questions. The useful question at this point was: What next?
I’d need a surgeon and a medical oncologist. For my surgeon I chose Dr. H. She was big and bosomy with short, thick red hair. When I asked her what she would do in my position, she said she would have a double mastectomy with no reconstruction.
For my medical oncologist I picked Dr. Y. Arriving at his clinic for my first visit, I walked past a closed office door and heard an insistent voice saying, “She needs the treatment!” It was Dr. Y. on the phone with an insurance company. This was my guy: a medical practitioner who took a stand at the intersection of cancer and bureaucracy.
In the exam room I sat cross-legged on the table while Don took a seat in a chair. Dr. Y. knocked and entered, all rangy height and bones. He introduced himself, then flipped though my chart, tapped his pen on the paper, and sighed. Poor Dr. Y. He seemed to need a stiff drink even more than I did.
Though it was impossible to get Dr. Y. to offer a firm opinion, his thought process was usefully transparent as he reviewed the pros and cons of dose-dense chemotherapy, lumpectomy versus mastectomy, and timing of surgery. He eventually agreed that it would be “not unreasonable” to do my first round of chemo before surgery, to try to shrink the tumor and get by with a lumpectomy. So that was the plan: chemo, then surgery, then more chemo.
“It would be not unreasonable to go out for lunch now,” Don deadpanned after we left the office.
The oncology nurses advised me to get a Mediport for the chemo treatments. A Mediport is a disk about the size of a bottle cap but thicker that’s surgically implanted under the skin and connected by a catheter to a large vein. If I didn’t get a Mediport, the nurses would have to start an IV line for every chemo treatment, and my veins were deep and small enough to make that difficult. I didn’t want to risk having a vein burn out and chemo leak into my tissues like acid.
Dr. H. inserted the Mediport at a local hospital. Remarkably I woke up in the middle of the surgery and felt a tug near my right collarbone, as if somebody were pushing a needle through my skin. Wait! Somebody was pushing a needle through my skin! I opened my eyes, but a cloth hung above my face. As if the experience wasn’t already enough like an alien abduction, I heard voices talking about a space shuttle.
As I lay there, I wondered: were the stitches being sewn into my skin the dissolving kind, or would I have to have them taken out later?
“Will the stitches have to come out?” I asked. “Do I need another appointment?”
The voices fell silent. Dr. H. pulled the cloth away and shot an astonished look at me, then an annoyed one at someone behind me — the anesthesiologist, I’m guessing. She asked me in a pretend-calm voice, “Do you think that question can wait until later?”
The next time I woke up was in recovery. The Mediport poked from my chest like a cyborg implant.
Before the lumpectomy I’d be getting four rounds of the breast-cancer drugs Adriamycin and Cytoxan, each three weeks apart. These medications attack malignant cells by interrupting their ability to divide, but they also kill white and red blood cells, making you tired and vulnerable to infection. The trick is not to get sick; even a cold would delay the next treatment and reduce its efficacy. Other side effects include hair loss, mouth sores, nausea, and vomiting. The cancer center gave me a “Chemo and You” brochure with color pictures of smiling patients not vomiting.
The chemo drugs were administered at the cancer center in an outpatient infusion room, a big space with windows overlooking a parking lot and landscaped area. The room smelled of alcohol, latex, and cookies. Shelves held an eight-year-old’s idea of food: Oreos, Chips Ahoy!, Reese’s Peanut Butter Cups. Given that some cancer doctors would have you banish white flour and sugar from your diet forever, this abundance of junk food surprised me.
Two dozen padded leatherette chairs lined the walls, each a cross between a Barcalounger and a lethal-injection gurney. At any given time about half the chairs were filled with patients: young, old, male, female, black, white, brown — my comrades in chemo. I made my way to a chair at the farthest corner of the room, by the window with the greatest number of green plants outside. This would be my spot for the next six months.
On my first day an oncology nurse pumped the red Adriamycin by syringe into my port and had me chew ice to reduce the chance that the drug would eat away the lining of my mouth. Then she hung the Cytoxan from my IV pole and moved on to another patient.
Across the room from me, a middle-aged man with the build of an old football player was getting a new type of chemo.
“Ever do this before?” he asked his nurse.
“It’ll be fine,” she said, breaking open an IV kit. “Just hold up the manual so I can follow along.”
The man laughed. The staff was jokey and never talked to us in that high-pitched voice of institutional condescension. They called everybody “darling” and acted as if seeing us was the best part of their day. Their kindness and devotion turned that terrible room into a sacred space.
We patients sat with friends, read magazines, and bantered with the nurses — all of us except Walter, who was in his seventies, with white hair and plum-dark skin. One day a nurse asked Walter who the woman was who dropped him off every day. “My wife,” he said. “She has to go to work.” After the nurse had moved on to another patient, I heard Walter say to no one in particular, “She’s loved me for forty years.” I think I was the only person who heard him. It was like seeing a shy forest creature briefly reveal itself.
Some of us patients got better. Some of us died. I don’t know what happened to Walter.
My chemo treatments took five hours each. The night after the first one, I woke up and puked repeatedly into a soup pot while Don held my forehead. A few weeks later I was taking a shower when clumps of hair started falling out in my hands — a dizzying shock, even though I’d known it would happen. I had the remaining hair shaved off.
Baldness bothered me less than I’d thought it would — you get great service from uncomfortable waiters — but then my eyebrows fell out, too. Dark circles appeared under my eyes. Friends gave me head scarves, baseball caps, floppy hats — all of which felt like neon signs saying, Person with cancer.
I tried to keep working but was too exhausted. My income as a freelance writer plummeted. (Don started paying all our bills.) The chemo spurred the growth of cataracts in both my eyes. The world looked as if I were viewing it through dirtier and dirtier windows.
Two years earlier I’d sat with my brother, Ara, as he lay dying of lung cancer at Massachusetts General Hospital. One time a chaplain came and asked if he could pray at my brother’s bedside.
“I don’t share your beliefs,” Ara said, “but I’m glad to accept your goodwill.”
The chaplain murmured something about life everlasting. I took my cue from Ara and did not stare daggers at him, but I didn’t buy into the notion of an afterlife. As a child I’d been astonished when my mother had told me she expected to see her parents again in heaven. It had seemed preposterous. Apparently Ara wasn’t much of a believer either, though we’d never talked about it.
The day after the chaplain’s visit, Ara, high on morphine and close to the end, started writhing around and repeating, “I’m afraid of the dark, I’m afraid of the dark.” I wondered if he had regressed to some childhood memory, because he also kept saying our sister’s old nickname. But then Ara said, “I’m afraid of the darkness that’s to come.”
His words startled me. I thought, Whatever I say now, it can’t be a lie. So I said the truest thing I could. I leaned over and whispered into my brother’s ear, “I hear you.” Then: “We’re afraid because we don’t know what it is.”
Ara seemed to relax. Two days later he died.
Now I was the one afraid of the dark. But I was also curious. What was I afraid of, exactly? The prospect of ceasing to exist, of course. But I was also frightened at the prospect of not making the most of what remained of my life. So often I’d felt half asleep, lonely for a richer relationship with other people, with my own vital energy, with the spinning world.
My experience with Ara in the hospital, however, had shifted my perspective. I’d stood with him at the threshold of mystery.
Lying on the blue couch in my living room, I paged through books that advised me to visualize myself fighting cancer cells like a superhero; books that discussed cancer as a gift for appreciating the preciousness of life; books that extolled the healing power of love, of prayer, of broccoli. I tried to pray — here’s where a belief in God might have come in handy — but I couldn’t decide what to pray for. A cure, obviously, but I didn’t want to set myself up for further disappointment. I wanted to pray for the strength to accept reality as it is. I tried “Thy will be done” — but then provided helpful suggestions.
In some ways I could imagine dying more easily than I could imagine really living. I still couldn’t talk on the phone with my mother without feeling defensive. I couldn’t let Don be himself without also wanting him to be both more and less than he was. I couldn’t sit quietly without craving distraction. Was it in me to do better?
After dark I’d try to relax in a deck chair outside and gaze at the ridge beyond our backyard. Sometimes Don would join me, noticing, as I never did, which trees needed pest treatments. And every night, even through my cataracts, I could see here and there the glint of predators’ eyes. All around the house raccoons, foxes, and coyotes went about their business, sniffing, touching, and tasting their surroundings. My cat, Kaya, would lie on my lap and prick her ears at sounds I could not hear. Sometimes, late at night, creatures let out wild and frenzied sounds, whether of fighting or fucking I could not tell. It was thrilling. If you put us all together — the raccoons, the locust trees, me, my cat, this eerie wailing — did we add up to something bigger, the way drops of water form an ocean? After I died, would I dissolve into that?
One day I was sitting around indulging a favorite hobby: second-guessing every decision I had ever made. All roads not taken seemed to lead to health and success: If I hadn’t used the birth-control patch, I wouldn’t have gotten cancer. If I’d gone to Columbia University instead of Syracuse, I would have studied international relations as well as journalism and become a foreign correspondent in a safari jacket.
But then I had a sudden insight, a momentary sense of unity with all that is — animal, vegetable, mineral. I imagined that we are all one life exploring its infinite possibilities. I was the strand that went to Syracuse University, loved dark chocolate, and cheated on my journalism typing test. Other strands went to Columbia and had a byline in The New York Times, or could lay eggs in the sand, or photosynthesize, or catch mice. Each strand was an equally important part of the whole.
For a while I felt free of regret. Still, I wished I could have had that Times byline.
Somebody told me that if you take twenty peppercorns, boil them in two cups of water for twenty minutes, then drink the liquid as a tea, it wards off colds. Since getting a cold would delay my next chemo treatment — which could bring about an undesirably rapid encounter with nonbeing — I tried the tea every time I started to feel symptoms. It worked, and I managed to stay on schedule.
That fall Dr. H. performed a lumpectomy and a biopsy on the sentinel node, the lymph node closest to the tumor. I woke up in the recovery room with Dr. H. standing by my bed. The sentinel node, she said, had tested positive; the cancer had spread. Therefore she had taken out the entire cluster of lymph nodes under my arm. These and the lumpectomy tissue were at a pathology lab for further testing.
Several days later Dr. H. called me at home with the pathology results. The removed tissue had bad margins, she said. She hadn’t gotten all the cancer cells.
Next step: mastectomy.
The same month I was diagnosed with cancer, my cat was, too. Kaya was an orange-and-white tabby I’d adopted from the local shelter. I’d had pets before, but never one that trusted and adored me as completely as Kaya. She had been a happy indoor cat when I’d lived downtown, where she’d hidden behind doorways and playfully jumped at me as I walked by. When we moved to the country, she’d become an even happier indoor/outdoor cat. The first time she went outside, Kaya immediately climbed a tree. On subsequent outings she’d venture from my side in widening arcs, racing back to me occasionally for reassurance until she no longer needed it.
At the age of eighteen Kaya started losing weight. Instead of stalking the fields, she’d wander the deck briefly, then retreat back into the house. The vet said she had cancer and would die within two months without chemo, or within eight months with it.
Don and I decided not to give Kaya the recommended treatment. The idea of extending her life for a painful six months seemed to be more about our resistance to loss than about what was best for her. We resolved to pay attention to whether Kaya seemed to be in pain and to have her euthanized when the time seemed right.
Now I was facing these same decisions for myself. We’ve all seen those nature shows where the lion sits chewing on the antelope as it thrashes and tries unsuccessfully to rise. I didn’t want cancer doing that to me. So I purchased the book Final Exit: The Practicalities of Self-Deliverance and Assisted Suicide for the Dying, by Derek Humphry. I found chapter titles like “Self-Starvation” and “Self-Deliverance Using a Plastic Bag” unnerving. Surely there was something easier, some magic pill? See chapter 19: “How Do You Get the ‘Magic Pills’?”
I broached the topic with one of my many doctors. (Not my oncologist. I wanted him focused on curing me.) I told the physician I wasn’t depressed and wasn’t planning anything. I just wanted assurance that I’d be able to find adequate help if I ever needed it. He named a palliative-care specialist who focused on end-of-life decisions and told me that he would speak to him on my behalf if I wanted. Knowing there was someone I could talk to who wouldn’t evade the hard conversations lessened my anxiety.
Kaya didn’t die in two months or even eight. She lived for two more years. During this time she’d jump onto my bed, wrap her belly around my bald head, and purr. I wondered sometimes if she stayed alive because I needed her.
At Dr. H.’s suggestion I asked for a meeting in which a group of doctors from various specialties — medical oncologists, radiation oncologists, plastic surgeons — would review my records and recommend a course of treatment.
I’m a goner, I thought upon walking into the hospital oncology wing. There stood the most splendid fish tank, a hundred gallons filled with sparkling gold, aqua, and chartreuse specimens.
Based on the biology of my cancer cells and how far they’d spread, the doctors recommended not only a mastectomy but radiation and another round of chemo. My oncologist approved of this aggressive approach as well. Rather than feel forever lopsided with a breast on one side and a flat scar on the other, I decided to have reconstructive surgery. The surgeon would form a new breast from skin, fat, muscle, and connective tissue transplanted from my belly.
The morning of the surgery I lay in the pre-op area afraid, then bored, then fearful again. An assisting surgeon entered, lifted my gown, and started drawing on my skin with a felt-tip pen. He marked lines and circles on each breast and an astonishing eighteen-inch slash across my belly. I looked like a diagram for beef cuts: brisket, sirloin, and flank. An urge to flee — ass bare, rolling my IV pole — gripped me, and I almost called off the procedure.
I woke up in intensive care feeling like wet cement. Bandages covered my torso, and four tubes jutted out of my groin and left side, each ending in a lemon-sized plastic bulb that was filling with pink liquid.
Don came in looking as if he hadn’t slept, his eyes red behind his wire-rimmed glasses. He stroked my head and glanced at the drainage bulbs, which would go home with us. He offered to look under the bandages with me, but I wasn’t ready for that yet. I knew it was bad, because every time a nurse or doctor checked my wounds, they’d exclaim over them as though looking at the Venus de Milo.
I was in the ICU for five days. At night a thin, young nurse with long black hair would come in as swift and quiet as a cat to check monitors and straighten my sheets. I watched her through half-closed eyes.
“It’s beautiful, the way you work,” I told her once, in my drugged stupor. “No wasted movements.”
She turned around, surprised.
“We like coming in your room,” she said, “because you are getting better.” Many people in the ICU weren’t.
Fortunately the transplant held and the breast healed fast enough that I could stay on schedule with radiation. I was also able to have cataract surgery so I could drive myself to daily treatments. I had another round of chemo and started taking a drug that inhibits hormone-receptive tumors by wiping out the last vestiges of estrogen from the body. For me that led to bone loss, memory decline, and a certain lack of interest in the opposite sex — even movie star Antonio Banderas in leather pants.
Here’s some advice: if you want the romance in your relationship to last, think twice about having your lover drain your wound-seepage bulbs. After I came home from the hospital, Don performed this service several times a day. He’d pick up each bulb, careful not to tug on its tube, and empty it. Of all I had suffered, this bothered me the most.
The radiation treatments were relatively easy. My skin reddened like a sunburn but never blistered. (I didn’t dwell on how radiation itself increases cancer risk.)
Several months after the last treatment I saw the plastic surgeon again in his office. “You’re killing me!” he said with no apparent irony when he saw the starburst pattern of scars around my navel. Apparently I scar excessively, and it ruined his artistry. After removing the tissue, the plastic surgeon had repositioned my bellybutton, and now, if I close my eyes to touch my navel, my finger lands one inch low and to the left. I can think of no better metaphor for losing one’s center.
After a year I hardly recognized myself. A knotty scar streaked across my belly. My right breast sagged, while the reconstructed left one sat high and appeared lumpy. A tattoo artist had inked a faux areola on it. If my body was a work of art, it was a Picasso — a woman with harsh angles and distorted proportions.
Ten years after the diagnosis, my status is NED: No Evidence of Disease. Every cancer-free year improves my odds of surviving to the next.
I’ve talked to women whose partners were insensitive jerks while they were going through cancer. Don was more thoughtful, reliable, and supportive than I could have wished for. Afterward, though, he was exhausted. He wondered when I would start paying my way again and maybe vacuum a few dust balls around the house. But I was bone tired and disoriented. I found a job but not the strength to give much to our relationship. So I moved to an apartment in downtown Rochester, where I now live within walking distance of three movie theaters, the Philharmonic Orchestra, and a Mexican restaurant. Don moved to the red-rock country of Arizona.
Before he left, he and I buried Kaya together in the backyard of our old house, in her favorite chipmunk-hunting spot. I wrapped her body in a blue flannel pillowcase and placed her in the ground, along with one of her toys and photos of the three of us.
My hair grew back white. After five catless years I adopted two kittens. At night, when I’m in bed, they pounce on each other and growl happily. If I stir, they look up in unison at me, their eyes gleaming. They are alive. They are curious. They are a mystery.