Survival Is a Matter of Instinct
You know your body better than anyone else. If you think you have cancer or you dream you have cancer or you have a nagging, persistent belief that the cancer you conquered has recurred, then keep pushing for answers until you're sure, one way or the other. Even if you have a long history of being a hysterical hypochondriac, trust your instincts. Finding cancer early saves lives, and it's just about the only really sure thing that does.
I imagined I had cancer before I knew I had it. The idea of it crept into my consciousness like a song that I couldn't stop singing -- a melody I couldn't remember ever learning, but whose particular sound was stuck in my head all the same, insisting on being heard.
The first faint notes came from a local news report in my hometown of Santa Barbara, California, and though I now live a hundred miles to the south, the flurry of phone calls that followed -- "Did you hear?" "Have you talked to her?" -- obliterated the barriers of distance: Lisa, a dear friend from high school, had been diagnosed with advanced metastatic lung cancer. This was news in that town because Lisa was the daughter of the city's congresswoman who had won her husband's seat after his sudden, midterm death from a heart attack two years before. It was both awful and amazing, like learning that lightning had struck in the same place twice. I immediately picked up the phone and called Lisa, hoping that the reports were wrong, hoping that it was a terrible rumor, hoping -- uncharitably -- that maybe they'd gotten the name wrong and it was Lisa's little sister or brother who was ill.
Nathan, Lisa's husband, answered the phone -- and I pictured him stationed there in the living room of their Berkeley home, stoic and generous, rising to the occasion of a phone ringing off the hook. I didn't know Nathan well, but I recalled how he had pursued Lisa in college, convinced that she was the woman he was destined to marry, and how Lisa had hemmed and hawed, concerned with the philosophical questions of how you could decide on one person to share your life, and how you could know when you'd found him. It seemed a laughable debate, when Lisa finally brought Nathan home: she was a very tall, very blond, very blue-eyed woman with a happy, open face, and Nathan looked like a carbon copy who had been designed for the express purpose of being her life's mate.
He told me the same thing he told all the other stunned callers who dialed their house in Berkeley that night: "It's true. We just found out. She'll call when we know more."
At Santa Barbara High School in the mid-1980s, Lisa was a homecoming princess, a nationally competitive long-distance swimmer, valedictorian of our class, my neighbor, and the first person I had ever met who recognized, understood, applauded, and shared my ambitious nature. She was a smart girl who prided herself on her smartness and for that alone I would have loved her because it gave me the confidence to feel proud, too. We took the exact same schedule of advanced placement courses and pushed and prodded each other to achieve the grand ambitions we both nurtured like pearls. At the time, we weren't sure exactly what those ambitions were or where they might take us; we only felt the fierceness of the desire to do something or be someone, and that desire brought us together -- sometimes in unexpected ways and places.
The summer after our junior year, I went to England for an immersion course in Shakespeare's plays. I was thrilled about the adventure but homesick from the moment I stepped on the plane in Los Angeles. I was the youngest student on the trip by five years -- the only high school student -- and I not only felt scared of the intellectual challenge, I felt scared of the reality of being in a foreign country with a group of strangers. We had two days in London before going out to Stratford, where we would be studying. On one of those days, we went to visit St. Paul's Cathedral. I was sitting in one of the pews, staring up at the dome and listening to the hushed sounds of a throng of people trying to be silent, when I heard someone say my name -- too loudly. I snapped around to see Lisa, standing there in the aisle, towering above the crowd.
I sprang up to hug her. "What are you doing here?" I demanded, thinking she had somehow come to give me a message or bring me something I'd forgotten to pack.
"My dad just decided to come," she explained. I looked over her shoulder at her dad, as if his presence would confirm the fact of her being there.
"But how did you know I would be here?" I pressed, thinking that somehow my mother -- a travel agent -- had passed along some inside information.
"I had no idea you'd be here," Lisa explained, laughing. "I pictured you watching A Winter's Tale in some dark old theater in Stratford."
"That's Wednesday," I said, feeling excited again about doing what I'd come to England to do.
During the winter months of our last year in high school, Lisa and I would race off campus at lunchtime in her red convertible VW Bug to search our mailboxes for college acceptance letters. Lisa got more than I did, but we both eventually settled on colleges we were sure would help us shape and launch our dreams. She ended up at Stanford and I went east to Wellesley, three thousand miles away.
After college, we each married and we each had two children -- boys for Lisa, girls for me. We lived near each other for short periods of time in New York and then in Los Angeles, but our friendship didn't become a relationship about our kids and husbands. It remained a private encouragement society. Lisa encouraged me to keep writing what I wanted to write rather than what other people wanted me to write, and I encouraged her to stay true to herself and her own ideas as she made her way through the maze of academia. She was working toward a degree in narrative psychology and quietly doing innovative and award-winning work that brought together elements of linguistics and psychology. She was interested in the way that people with various mental disorders tell stories about themselves, why they tell them, and what they mean.
During her third winter as an assistant professor of psychology at Berkeley, Lisa caught a cough that wouldn't go away. Instead of being told she had strep throat or bronchitis or pneumonia like so many other people going into the cold season, she was told she had lung cancer and that it had already invaded the bones in her spine. No one ever talked about how long she had to live, or even whether she would live, but no one had to. Metastatic lung cancer, even in an otherwise healthy thirty-five-year-old woman, is a staggeringly virulent disease.
I wanted to fly to Berkeley immediately to do something to help -- but everyone wanted to fly to Berkeley to do something to help and there wasn't room for us all, either at the house or in Lisa's illness. Lisa's mom would be there as Lisa started her chemo, her sister would follow, and Lisa and Nathan had a network of devoted and generous friends who knew their two boys, knew the routines of their days, and knew what was needed to help. "Don't come," Lisa said. "It's too overwhelming right now." I was just an out-of-town high school friend who wasn't needed at the center of the crisis. I felt helpless and stung, and I did the only things I felt I could: I worried; I talked constantly with everyone I knew who knew her; I mailed her cards and letters, quotes, and stories; and I bought her a hat.
Lisa expected to lose her hair immediately from the chemo and she'd decided not to wear a wig. She'd gone out with her mother to look at them but couldn't bring herself to buy one or wear one. I imagined I would have done the same. I scoured the stores for hats that looked soft and wearable, and found a cotton hat in a watery blue batik print that looked exactly like the kind of thing Lisa would wear. Blue, to match her eyes. Bright, to match her spirit. Not too fussy or prissy. I felt pleased with myself as I wrapped the hat in tissue paper and sealed it in a padded envelope, but as soon as I mailed the package, I realized how small my efforts were. They didn't do anything meaningful to help Lisa heal, and they didn't do anything to alleviate my fear for my friend.
I bolted awake in the middle of the night with my brain spinning, imagining what it must be like to have lung cancer. I pictured Lisa's breath moving slowly in and out of her lungs as she lay awake at night picturing the mutant cells that wouldn't accept the message to stop reproducing. I could hear David, her five-year-old son, coming up to her and saying something innocent -- "I can get you a Band-Aid for your cancer, Mom" -- and the tears that would spring to her eyes as she had to either lie and thank him or tell the truth and shatter him. I pictured her husband looking at her with an expression that couldn't possibly hide how scared he was that she would die and leave him alone with a house, two boys, and a life that was meant to be shared.
I got so good at imagining the dread of the disease that after only a few nights I decided that it must not be my imagination at all. I decided that I, too, must have cancer. I'd had a small tightness in a vague place on the left side of my chest, and for months I'd thought of it as a pulled muscle or mild recurrent heartburn. I was now convinced that it was a mass of insatiable cancer cells marching through my breast.
Cancer works well as an imagined illness because it generally has no discernible cause. Unless you work in an asbestos plant or smoke two packs of cigarettes a day, you can't ever really say why cancer turns up in your body. It could be the hormones in the milk, the pesticides on the fruit, the smog in the air, the stress in our lives, or that nitrate-filled bologna sandwich you had for lunch every single day from kindergarten through sixth grade. It might have to do with how early you got your period, how late you had your children, how little you nursed them, how much you depended on birth control pills -- or all of the above. Anyone could get cancer, for any of those reasons or for none of them, so why not me? What if me?
I'm not a hypochondriac in the usual sense of the word. I don't imagine myself actually plagued with horrible disease, complete with real or even imaginary symptoms. I come, in fact, from unusually healthy stock: in my family, no one gets sick and they live so long, they don't so much die as wither and decay. My feared diseases are always hypothetical, things that might happen sometime out there in the void of the future. They're the mental exercises of someone who's read hundreds of books about things that fall apart, of someone who was a child of divorce and learned early that nothing stays whole forever. Other than visits related to pregnancy and childbirth, I'd been to the doctor exactly three times in the last ten years.
Still, as I stepped into my family practitioner's office, I was aware that my story sounded paranoid: I had a sore spot on my breast that got more pronounced when my friend found out she had lung cancer and I realized there was nothing I could do to help. I put on the paper gown, sat on the table, and entertained thoughts of slipping back into my clothes and sneaking out the door. The only thing that kept me in place was a poster on the wall next to the examining table. It was an illustration of the lungs, showing one red healthy lung and one gray cancerous lung. It was a detailed, four-color blowup of Lisa's exact disease.
When the doctor showed up with my chart in her hand and asked what the trouble was, I explained about the sore spot and quickly added that there was also this thing about my friend who was just my age, with two kids just like mine, who'd gone in with a cough and come out with cancer. My doctor listened, nodded, and did a breast exam. "There's nothing here," she said, creasing her forehead and shaking her head. "I think it's just a sore rib, but to make yourself feel better, why don't you go get a mammogram?"
I could have gone home and forgotten about it, convinced that I'd followed my paranoia to its furthest practical end. Most women don't get their first mammogram until they're forty. Many HMOs would prefer that we not get into the habit until we're fifty, when our breasts aren't as dense and our odds of getting a clean bill of health aren't as good. But Lisa had already proven to me that cancer knows no age limits, and I was eager to clean the slate of my imagination. A week later I stood half naked in a cold room and had a technician with cold hands squeeze my breasts between the cold plates of a cold machine and tell me not to breathe. She stepped behind a shield, produced a sound similar to the one made by Darth Vader's light saber, then told me to tie up my gown and wait while she showed my films to the radiologist.
I waited in the examining room, thinking of Lisa. She had sat in a room just like this, waiting to hear the results of a test just like mine, and someone had walked in and said the word cancer. What would it be like to hear news like that? How had she felt? How would I feel? I decided that it would be easy to be shocked but hard to be surprised; after all, I was sitting in a medical facility whose entire purpose for being was to find cancer in women's breasts. It wasn't as if they were going to come back and tell me there was something wrong with my big toe. They were either going to find cancer or they weren't. I was either going to continue to be a witness to my friend's struggle to live -- a worried outsider with my nose pressed against the glass -- or I was going to join her struggle in the most personal and perilous way possible. I thought these thoughts, but I didn't for one second believe that anyone was actually going to walk back into the room and announce that there was something wrong.
When the radiologist came back, she confirmed what my doctor had determined: that there was nothing but healthy breast tissue in the place I was complaining about. I nodded, easily convinced. She went on to point out, however, that there were tiny calcifications in my other breast that she wanted to keep an eye on. "Lots of women have them," she explained, as if we were talking about oily skin or cellulite, "and ninety percent of the time they don't mean a thing, especially in someone your age. Come back in six months and we'll check them again."
Sure, no problem, we'll check them again, I thought. As far as I was concerned, what I had feared had not occurred. I hadn't imagined anything wrong anywhere else in my body besides my left breast, and since there was nothing there, I relaxed the grip of my imagination. No more dreams of disease woke me in the middle of the night.
For the next six months, Lisa continued to battle cancer. She didn't like to talk about her treatments or their side effects or her future; whenever we talked, she always wanted to know how my kids were doing or how my work was going, so I told self-conscious anecdotes about Emily's swimming lessons, Carlyn's spelling tests, and the mysterious error messages I was getting from my hard drive. I pieced together the story of her illness from conversations with friends in New York, San Francisco, Washington, and Santa Barbara. We pooled our knowledge -- she told me this, she told me that, so-and-so's mother ran into Lisa's mother who said such-and-such about her prognosis. Lisa's cancer was inoperable. She had two courses of high-dose chemotherapy to try to halt the tumor in her lungs and spine. She used yoga, meditation, visualization, and acupuncture to try to turn the considerable power of her brain against her disease.
Although I continued to offer and to ask, Lisa still didn't want me to make the short trip from L.A. to Berkeley to visit her because she was never sure which days were going to be good and which days were going to be bad. I didn't care about being there on a bad day, but that was because I wanted to visit for my own comfort -- not hers. It was maddening to have to respect her wishes and stay in L.A. I wanted to be near her, to do something to help her, to see with my own eyes the truth of what she was going through. Instead, I continued to send her cards -- quotes from Annie Dillard's Pilgrim at Tinker Creek and drafts of a story I was writing about my irrational desire for Carlyn to love playing the piano even though I never had. She'd write me back when she was able to -- cheerful e-mail messages and quick notes in her distinctive, loopy scrawl:
I LOVE the Annie Dillard quote. I couldn't make it through the book on my first try, but now I'm inspired. I DO remember when we went to hear her speak in New York. I remember being pleased about something she said about God. I'm hanging in there. I go back to Stanford for more chemo tomorrow, which I'm trying hard not to dread. I think I feel the positive effects already.
P.S. Did I thank you for the hat? I LOVE it. It fits perfectly and it's a great color and it's comfortable...and I am bald.
I posted Lisa's cards on the bulletin board in my office like prayer flags and continued to feel that there must be something more I could do.
When I got a reminder letter from my radiologist that it was time for the six-month follow-up, I grudgingly made the appointment, showed up at the doctor's office, and went through the whole cold-fingered routine one more time. After the mammogram, the technician said the same thing she'd said before -- to tie up my gown and wait until she showed the film to the radiologist -- but this time she came back and said she was going to do a magnification view, just to make sure they got the picture they wanted. Good idea, I thought. I stood in front of the machine again, held my breath, then sat down and flipped through House Beautiful while I waited. The technician came back a second time and announced that the doctor wanted to do an ultrasound in the room at the end of the hall. It began to register that something unusual was going on. Why did they want to do an ultrasound? Hadn't the radiologist said that 90 percent of women have these calcifications that turned out to be nothing? I asked the technician what was going on, but all she was allowed to say was that the doctor would answer my questions.
The doctor -- the radiologist -- soon came into the ultrasound room and spread a cold gel on my breast with cold hands. "What are you looking at?" I squeaked.
"It looks like the shape of these calcifications has changed," she told me. "I want to confirm it." This didn't sound so bad, but then she went on: "Calcifications that are naturally occurring are shaped like teacups. They don't change. Calcifications that come from tumors have a different shape."
I stared at the ceiling. Tumors?
She started to work the machine, peering at the black-and-white image on the little screen. After only a few seconds, she said, "We're definitely looking at a biopsy here."
"A biopsy?" I said. For a millisecond I wondered if she was joking.
"We do it right in the office," she explained. "It's a simple procedure. Doesn't hurt a bit." She handed me a brochure that was supposed to answer all my questions and I took it, even though I couldn't think of a thing to ask.
I was in such complete denial that cancer could be found that I spent the next week planning for Carlyn's birthday party and preparing material for a writers' workshop I was scheduled to attend the following weekend. When I thought about the upcoming biopsy, I thought only about the procedure itself. I was scheduled to have what's called a stereotactic core biopsy. I looked up the term on the Web and learned that it was a relatively new procedure, which allows the doctor to pinpoint tissue on a computerized image of the breast and take a core sample all the way around it. It reminded me of a geology class I took in college. When a friend told me that a friend of hers had recently had a core biopsy and that it had hurt, I called the radiologist and asked her questions about anesthesia and whether she thought there was any problem with my driving to the writers' workshop after the biopsy was over. I never even formulated the question "What if...?" When my mother insisted on driving two hours to be with me for the biopsy on Friday, I thought it was unnecessary and arbitrary. I wondered why she suddenly felt so maternal.
I was enormously grateful, in the end, that my mother had had the foresight to make the trip because the biopsy did, in fact, hurt -- a lot -- and it was a comfort to know someone was sitting in the waiting room waiting for me.
First, the radiologist made me lie down on a rigid, wavy table, then made me place my breast in a cutout where she could reach it. Once I was in position, she told me not to move. She gave me a local anesthetic in my breast that was supposed to halt the pain the way Novocain does at the dentist's. It didn't. She tried five separate times to numb my breast, but it never completely worked. "You're setting the record for anesthesia," she cheerfully explained. Each time she turned the needle to get a sample of more tissue, I felt as if someone was plunging a knife into the soft underbelly of my body and spinning it in circles. I sobbed, recalling -- too late -- my body's unwillingness to respond to the best medications on the maternity floor and feeling sorry for myself to be in this position yet again. The nurse brought me a Kleenex and reminded me not to move. When the forty-five-minute biopsy procedure was over, I sat up on the table, held a cotton ball over the pencil-size hole in my breast, and wept -- both because it was over and because it had hurt so badly. The radiologist felt so sorry for me, she allowed my mother to come back and sit with me in the patients' waiting area while I held an ice pack to my breast.
I spent the next few days at the writers' workshop and, though my chest was wrapped up like a mummy's, I got so involved in the people and the work that I was able to keep any thoughts of results at bay. On Monday, however, I hung around the house all day waiting to hear from the doctor, and by the time the kids got home from school, I couldn't stand it anymore. I figured my fate was already sealed. It was either going to be cancer or it wasn't and I couldn't do a thing to change it.
"Let's go to the pumpkin patch," I said, and began to round up shoes and jackets. I hated the pumpkin patch. It was an old corner car wash that had been turned into a dirty, money-grubbing petting zoo -- amusement park -- pumpkin patch and would, a few weeks later, be turned into a dirty, money-grubbing Santa's lap -- amusement park -- Christmas tree lot, and it smelled of sadness and ruin to me. It was a good place to wait for news that had a 50 percent chance of causing sadness and ruin. I called to invite one of Carlyn's friends from down the street because Carlyn begged me to and I didn't have the will to resist. We piled in the car and went to pick out picked-over pumpkins.
The call came while we were gone. It was a vague and foreboding message from my family practitioner: "I need to see you tomorrow. Call my secretary and make an appointment." While the kids drew faces on their pumpkins with permanent markers they usually aren't allowed to touch, I dialed the doctor's number, desperate to catch her before she left for the day. I shook from the inside out -- my heart and my stomach fluttering while my fingers steadily dialed. My doctor came to the phone almost instantly and told me that I did, in fact, have breast cancer. It was an early, as-yet-unfeelable cancer snaking through the milk ducts in my right breast, where my imagination had never strayed.
I called Rob at work and uttered three words: "I have cancer."
I put the emphasis on the word cancer, with a slight questioning intonation, as if I was calling to say that I had some rare disease that you only get from horned purple ticks deep in the Amazon rain forest and I wondered how such a thing had possibly come to pass. He uttered four words back in a flat and stunned tone: "I'll be right home."
I immediately dialed the radiologist's office, praying she was still there. She came instantly to the phone, but her voice was far less comforting than my family doctor's had been. She spoke in a cool and competent voice that was just the tiniest bit rushed. She explained that my cancer had yet to invade beyond the breast, but described the cell type as being aggressive. When I asked her what I should do next, she told me I would have to find an oncologist and a surgeon. Hearing those words -- oncologist, surgeon -- was more of a jolt than hearing the word cancer.
Rob arrived home in the middle of this phone call, dropped his briefcase in the front hallway, walked directly back to where I was still talking on the phone, and kneeled next to my chair. It wasn't until I saw him that I started to cry. I covered my face with my hands and sobbed. I hated that he had to be part of this. His mother had died of breast cancer only six years before and he didn't deserve to have to face it all over again. He didn't deserve anything besides a healthy wife, and I was now and forever after going to be someone who was at risk of forcing him to make good on his promise to love in sickness as well as in health. That wasn't the picture I had painted for our life together. I had always envisioned Rob being the one to die first.
When they heard me crying, the girls came running. "Don't worry," I said, waving them back to their pumpkins, "I just got some bad news from the doctor."
"Do you have to get a shot?" Emily asked.
"Something like that," I lied.
I felt fragile, as if moving too quickly or too suddenly would cause the cancer to spread through my body like wildfire. I felt physically diminished, as if my body displaced less air than it had only a few moments before. But I also felt immensely alert, as if I'd stepped out from the darkness into the clear light of day. I hadn't been able to see my cancer and I hadn't been able to feel it, but I had heard it calling. There was pride in that, and there was power, and I knew exactly what I had to do: get it out of my body.
Copyright © 2001 by Jennie Nash
And Other Lessons I Learned From Breast Cancer
The Victoria's Secret Catalog Never Stops Coming
And Other Lessons I Learned From Breast Cancer
Some five years younger than the AMA-recommended age for mammograms, Jennie Nash insisted she be tested, not because of a lump but because of a hunch brought on by a friend's battle with lung cancer. Jennie was as shocked to discover as her friend had been that cancer knows no age limits.
From detection and surgery to reconstruction and recovery, Jennie gives readers a road map for a journey no one chooses to take. She details both the large and small lessons learned along the way: the importance of a child's birthday cake; the pleasure of wearing a beautiful, provocative red dress; how to be grateful rather than guilty when someone brings lasagne to the door; and that sometimes the only difference between getting to live and having to die is luck.
A celebration of survival, Jennie Nash's account transforms one of life's most harrowing experiences into a story of reassurance and enlightenment.