Articles by Nicki Serquinia
Choosing Life: The Pacific Northwest Inlander 2006
Hair Apparent: The Spokesman Review 2001
A memoir by Nicki Serquinia
I don’t know why I lived. For a long time I believed it was because I drank organic carrot juice every day and did everything “right.” That is, I had a positive attitude and never believed for a moment that I would die. As the years pass, I realize that I clung to that belief because it gave me the illusion that I was in control, that I had cured my cancer out of sheer will.
It began as a weird feeling in my right side when I ran down the steps to do a load of laundry—a sloshing like when you were a kid and drank too much water.
I wasn’t particularly worried. I had gone in for a complete physical in March, for my 35th birthday. I didn’t have health insurance, so I hadn’t had a physical in years. But that was what I wanted for my birthday: a clean bill of health. I was adamant about it. I had my first mammogram, a pap smear, all the blood work. Everything came back perfect.
Looking back, there were other signs: sitting in our small aluminum fishing boat in a swimsuit and shorts, my belly seemed fat, in a strange way—flat at the bottom and bulging just below my navel. It didn’t make sense. I hadn’t been doing anything to gain weight. It hurt to take a deep breath. When my boyfriend and I tried to make love one afternoon, his belly pushed into mine like a beach ball. I couldn’t breathe. I felt as if I were suffocating. I pushed him off and told him he needed to lose weight. He said, somewhat cautiously, that it felt like my belly was big. He was 6’, 220 pounds and built like a grizzly bear. I weighed 125 pounds and my stomach was fairly flat. “I don’t think so,” I said. We laughed it off, and again, I ignored it.
My breathing got worse. It felt like my lungs were full of razor blades, but it never occurred to me that it was related to the feeling in my side. On a Thursday afternoon in mid-July, I ran down the steps and the weird feeling hurt.
I came upstairs, lay on the bed, and felt my belly. Right above the pubic bone was a hard mass about the size of a grapefruit. Everything stopped but my heart.
It was foreign and fascinating. When you touch your arm or your ankle or your ear, you feel it in your fingers as well as whatever you’re touching. It’s not like that with a tumor. A tumor is dead weight. It so obviously does not belong in your body. The fear is visceral, not intellectual. Those first few seconds stretch out like taffy as you wrack your brain for a reference or context, trying to figure out what it is and how it got there without your knowledge or consent.
I thought I must be pregnant. It was the only explanation in my frame of reference, and the last thing I wanted.
My boyfriend was a charismatic alcoholic with a penchant for violence. When he moved into my house he had brought, as his dowry, 17 pot plants and the promise of good times and easy money. But he had greatly exaggerated his horticultural prowess. There was very little money and the good times were always one drink, gesture or ill-timed laugh away from a night in hell.
He told me several times a day that I was beautiful. We fished and played cribbage. We had a shared sense of humor and played off each other like Burns and Allen. He could make me laugh until my belly hurt. And he could turn on a dime.
The first hit came six months after he moved in—a blow to the head with a stoneware vase that resulted in nine stitches in my head and a loss of self that would take more than a decade to recover.
By the time I was diagnosed with cancer, three years later, I had put a stop to the physical violence, but the fear never left me. His rages came out of nowhere, and I never knew what would set him off. I lived in constant fear of being busted or busted up. Whenever I told him I wanted him to move out, he’d laugh and say, “What are you going to do, call the cops?”
My doctor said I was either 14-16 weeks pregnant or I had a tumor, and he wouldn’t know which until we did an ultrasound. “I have to tell you,” he said. “If you are pregnant, you are way past abortion. There’s not a doctor in this town who will touch you.” I sobbed all the way home at the thought of being pregnant. I was trying to break away from Ken and he knew it. He would use this child to control me for the rest of my life. It felt like a death sentence.
When my doctor walked into the ultrasound room the next morning, I was ecstatic. “Hey Doc,” I said. “Good news. No baby!”
He stared at the screen, with his hand on his chin. “Nicki,” he said, “this is not good news.” I thought he was being a little dramatic. After all, we were looking at best case scenario.
An x-ray revealed an inch of fluid in the bottom of each lung. I saw a gynecologist that afternoon and was scheduled for surgery eight days later to remove what he believed was just an ovarian cyst.
During that week, my abdomen grew an inch a day, my lungs filled with fluid, and I could not get my temperature below 103. At surgery, my tumor was the size of a soccer ball. I also had a spattering of pea-sized growths throughout the peritoneal cavity, but the large tumor had not attached itself to the bowel, liver or other organs. I had 3.5 liters of acidic fluid in my abdomen and 1 liter of fluid in my lungs, for a total weight of 25 pounds. The abdominal fluid was clear of cancer cells, but the lung fluid had one cluster of suspicious cells. My post-surgery CA-125, the tumor marker test for ovarian cancer, was 1,335. Normal is below 35.
When I looked at the clock in the recovery room, I saw that four and a half hours had gone by, rather than the one hour Dr. Hiss had anticipated. I was returned to my room where Ken and my mother were waiting. They spoke in hushed voices as I drifted in and out of sleep. It was several hours before I could focus enough to form the words that were floating in my head. “Kenny,” I asked, “what’d he have to do?”
“He’s going to talk to you about that, Nick,” he said. And I was completely satisfied with his answer.
When Dr. Hiss came to my room that evening, he stood by my bed and said, “You have ovarian cancer. I had to do a complete hysterectomy.”
I stared at him through my morphine fog, waiting for the punch line. Finally, I said, “I was really hoping you have a dry sense of humor, but you’re not joking, are you?”
“No,” he said. “I wouldn’t do that.”
“Okay, what happens next?”
My mother told me later that she had been watching my face, expecting me to wail and scream or at least burst into tears. Though my response may seem unrealistically stoic, that was how I lived. I had trained myself not to react. My life, literally, depended on my ability to not respond until I had assessed the danger level. I lived in a mine field in which the location of the mines changed minute to minute. I had learned to analyze a situation within seconds, evaluate my options and possible responses, then respond in a way that would hopefully defuse the situation as quickly as possible. I had learned to keep it light, joke, be funny in order to be safe.
I had never even heard of ovarian cancer. I remembered seeing Gilda Radner on the cover of Life magazine a few months before. I knew she’d had cancer but I didn’t know until now that it was ovarian. She looked pretty good to me.
We didn’t have the Internet in 1988. We had 1-800-4-CANCER. I never called. The thing is, you can’t unhear something. And I didn’t want to hear one negative thing about ovarian cancer. I did not want to know how many women got ovarian cancer each year, and I sure as hell didn’t want to know how many died. I had no preconceived ideas about ovarian cancer, and I wanted to keep it that way, which is funny. That’s not like me. I’m usually the type of person who wants all the details. But something in my doctors’ and nurses’ eyes told me I didn’t want to know the odds.
I decided to put my highly refined skill of denial to use. I knew that my lifestyle—living on a roller coaster of fear and high drama, contributed to my cancer. But I also knew that to blame myself for getting sick was the most unhealing thing I could do. I made a conscious decision to take the position “Some Things Just Happen.” When I was done with cancer, I would look at my life and make some changes, but I couldn’t do both, and right now, cancer had the floor.
I thought of the scene from The Empire Strikes Back, where Han Solo purposely flies into an asteroid field to escape the Imperial Starship. Asteroids are coming at them from all directions. C3PO exclaims, “But Sir. The odds of successfully navigating an asteroid field are approximately 370 million to—”
“Shut him off!” Han yells. He grabs the steering wheel, stares straight ahead and focuses, not on the incoming asteroids, but on the dark spaces in between, and says, “Never tell me the odds.”
I held that image as I began a year of pretty heavy chemotherapy, in which I had to be hospitalized for all my treatments. It began with six treatments a month apart of Cisplatin, Adriamycin and Cytoxin.
I wasn’t happy about losing my hair, but in the week before my surgery, as my belly swelled and my temperature soared, I realized that in the olden days, I would have simply died—probably within the week. I also realized that not too many years ago there was no chemotherapy and no treatment for my cancer. I felt immensely grateful to have chemotherapy available to me and accepted the hair loss as part of the process that would help get me well.
Still, I was shocked to find how little help there was. I was not told when or how my hair would fall out, only that it would. I didn’t know anyone who had gone through chemotherapy and had no one to guide me.
Though I was a hairdresser, I didn’t have any more access to wigs than anyone else. I had worked with wigs back in the ‘70s, so I had some experience with cutting and styling them. On the last possible day I could have gone with my head uncovered, I went to a local wig salon and bought two wigs.
I dug an old Styrofoam head out of the closet and held it between my knees while I thinned each wig, pausing to run to the bathroom and throw up, then repeating the process until I had thinned each one by half. The long curly one made me look like a Halloween hooker and the short one looked like a fur hat.
I decided to try a scarf. I splurged on a beautiful Anne Klein silk scarf with deep blue flowers and black trim over an ivory background. Even the sale price was a stretch for my budget, but I decided I’d rather have one scarf that I loved than two or three that were okay. I sat in front of the mirror at home and practiced different ways of folding and tying it. Then, driving down the street on my way to an appointment, I looked in the rear view mirror to find it hanging off my right ear, and discovered too late that silk will not stay on a bald head.
Those were the days before the miracle anti-nausea drugs, so I was quite sick and easily fatigued. Going to the mall was a chore, but I finally found one scarf, a large rayon square, that became my constant companion for the duration of my treatment.
Cisplatin actually has platinum in it, so I felt as if I had heavy metal poisoning. Everything had a metallic taste, and I had a hard time keeping food down. Instant oatmeal, (apples and cinnamon), toast and peanut butter, chicken and potatoes became my friends. For the first time in my life, I had to fight to keep my weight up. By the time I finished the first six treatments, I was down to 110 pounds and beginning to look like a cancer patient.
I had a second-look surgery, in which Dr. Glen Hiss of Northwest OB/GYN and his partner, Dr. Peter Fern, worked more than four hours to straighten out my intestines, take 40 biopsies, install a port-a-cath in my ribcage and run a catheter into my peritoneal cavity.
My oncologist, Dr. Robert Laugen of Cancer Care Northwest, had read about an innovative new treatment for ovarian cancer: direct contact Cisplatin. He decided to try it on me.
I then had four treatments of intraperitoneal Cisplatin—two quarts of Cisplatin delivered directly into my peritoneal cavity through the port in my ribcage.
Though it worked for me, the overall results weren’t very promising. I recently spoke with Anna Quincy of Providence Cancer Center, who had administered my treatment. She told me 12 or 13 Spokane area women had received intraperitoneal Cisplatin over the next three years, and as far as she knew, I was the only one who survived. Clinical trials continued, though. Recently, in January 2006, the New England Journal of Medicine announced intraperitoneal Cisplatin as a breakthrough in treating ovarian cancer.
Ken was great during my year of chemotherapy. He made my carrot juice, cooked, cleaned and did the laundry. He still drank every day, but not as much, and most of all, except for a couple of incidents, he didn’t yell at me.
But six weeks after my last chemo, I went out to dinner with some girlfriends to celebrate the end of chemo and the return of my hair. When I came home he started raging on me, spewing his old jealous insults, and I knew that nothing had changed after all. I said, “I’m not going to get cancer again just so you will love me.” And I knew if I stayed with him, that’s exactly what would happen.
When I got cancer, my self esteem was at an all time low. But something happened during my year of treatment. Though getting chemo felt like stepping in front of a Mac truck once a month, the nurses and doctors liked me. I felt honored, seen and valued.
Cancer gave me clout. It allowed my to say what I needed and be heard. To put myself first and not worry that someone might be mad at me for doing so. It was the first time I felt I had the right to tell people, including Ken, they could not smoke in my house.
Cancer empowered me. At the end of that year, I thought, “If I can do that, I can do anything.”
I went into therapy with the explicit goal to recover enough of my self that I could look him in the eye and tell him to get out of my house. It took a couple of years, but he moved out peacefully and I got my life back.
During one of my checkups, Dr. Hiss looked at me, with tears in his eyes, and said, “Kid, now that you’ve beat this thing, I can tell you that the five year survival rate for stage 3 ovarian cancer is less than five percent.”
I was planting bulbs one afternoon, enjoying the peacefulness of my life, when the full impact hit me. I had been gifted with not one, but three second chances. I survived Ken, I did not get arrested for allowing pot plants in my house, and I survived ovarian cancer.
I was happy to put cancer behind me and get on with my life. Then my dear friend, the poet and English teacher Mary Ann Waters, was diagnosed with breast cancer. She called me up and asked, “Who’s your oncologist and what do we do next?”
We made a date to go wig shopping together, but she got anxious and went without me. The salesperson talked her into a black, curly wig that looked nothing like her. I took her back to the wig shop and helped her find a more suitable style and color. We proceeded to my house where I trimmed her wig and cut her rapidly thinning hair down to about two inches.
I remembered when my hair was coming out—how alone and unsure I felt. How I had learned, through trial and error, what worked and what didn’t. I looked at her reflection in the mirror and said, “Isn’t it nice to know that the person cutting off all your hair knows what this feels like?”
“You have no idea,” she said.
I got out my scarves and showed her how to tie them, and decided to combine my hairdressing experience and my cancer experience to help women with this process. That was 13 years ago. Since then, I’ve seen hundreds of women in various stages of devastation and acceptance when facing cancer and hair loss.
Being diagnosed with cancer is a loss in itself. In five minutes, your life is turned upside down. The world as you know it is gone forever. In its place is a new one, filled with one unknown after another. Each day there is another test, another lab report. Usually, there is surgery and the loss of a precious body part. But the biggest loss of all is the loss of innocence and safety. Tess Taft, a psychotherapist with Cancer Care Northwest, describes cancer as, “A terrorist holding a gun to your head. It says, ‘I might kill you. And I might not.’”
Beneath the most obvious question—”Am I going to die?” runs a spring of smaller questions: How will I feel? Will I be able to work, play with my children or grandchildren? How good is my insurance? Do I have the best doctor, the best treatment plan?
And, if that isn’t enough, you’re going to lose your hair.
For some women, losing their hair is just another bump in the road. For others it’s the hardest part of their treatment. And for some, it’s the hardest time of their life.
“Losing a breast was nothing compared to this,” my first client said, through her tears, as her long, rust-colored hair came away in my hands. I was shocked, but in the many years that have followed, dozens of women have echoed her sentiments. That’s a pretty powerful statement, especially given our culture’s obsession with breasts, and speaks volumes to the importance of hair to our sense of identity, self esteem and expression.
I’ve known at least two clients who did not allow even their husbands to see them bald, and one who never once looked at herself in the mirror until she had put on her wig or a turban.
On the other side of the spectrum, didn’t we love Melissa Etheridge for coming out on stage bald at the Grammys as she belted out Janis Joplin’s “Piece of My Heart?” The image and the song have become an anthem for cancer survivors, reminding us of what a “heartbreaker” cancer is.
Most of my clients come to see me before they begin treatment. They’re nervous, not knowing what to expect. It’s the hardest place of all, standing on the edge of a thousand unknowns. They usually have an image of Aunt Winnie’s Really Awful Wig firmly imprinted in their mind. They are visibly relieved when they see that wigs have come a long way, with transparent mesh tops and individually tied hairs that look just like a natural scalp.
Since I wore scarves when I was in treatment, I had always been frustrated that I had not found a good scarf distributor. So, about a year ago, I started looking on the Internet for scarf wholesalers. I searched several hours a day for weeks until I finally found the most exquisite cotton scarves I’ve ever seen. They’re as light and elegant as silk but will stay on a bald head.
In the process, I discovered a few sites for cancer patients. Most of them had dumb little turbans on sad-looking mannequins and I thought, “If I was newly diagnosed with cancer and I thought this was all that was available, I’d be in tears.”
I decided to start a Website for cancer patients that would take head coverings for hair loss to a new level—out of the mindset of trying to hide or cover up, to the truly attractive and fashionable. I went on the hunt for hats and scarves from top designers and artisans from around the world. I want my clients to look as if they’re wearing a hat or scarf because they want to, not because they have to.
People often ask me if it’s depressing, seeing women who are newly diagnosed with cancer. It’s not depressing at all. They remind me everyday of the beauty and tenacity of the human spirit. And I believe I offer them something they can’t get anywhere else.
While modern medicine’s ability to treat cancer grows more promising every year, the challenge of hair loss due to chemotherapy remains. My goal is to help women keep their dignity and self esteem in the process. I had a client recently who stood up, looked at herself in the mirror and said, “Oh, I can do this for the next nine months.” It made my whole year.
I continue to wonder why I lived, and my answer continues to change and evolve. Today, 17 years later, I believe I had an Angelic Intervention, not unlike an intervention when family and friends gather around the addict in their life, confront them and demand they make a choice. I was an addict. I was as addicted to Ken as he was his alcohol.
I remember sitting on the edge of my bed when I came home from the hospital after my surgery and diagnosis. I was white-faced sober, still dazed by those four little words that grabbed my life and shook it like a dish rag. I thought, “I don’t mind dying, but I don’t want to die unhappy.” And I thought of how sad it would be if I had lived the last year of my life the way that I had been living.
I imagine my angels and guides standing there, perhaps with their arms folded, tapping a foot, asking, “So now what are you going to do? Do you want to stay here and take responsibility for your life and stop acting like a victim, or do you want to leave?” I believe it could have gone either way.
I do not believe that people who die of cancer, like my friend Mary Ann Waters, did not “get their act together,” or did something wrong, or did not choose life. It’s not that simple. I am humbled by the women I’ve known, like Dr. Marilyn Ream, who wanted to live more than I did, who fought much harder, and did not make it.
I have no idea why I lived, but I’m beginning to suspect it had nothing to do with drinking carrot juice. The truth is, there is a larger picture at work in our lives and we are simply not privy to the details.
I believe our purpose in life is the development of our souls. If what my soul needed was to experience dying of cancer, then that’s what would have happened. But what I needed was to develop the strength to stand eye-to-eye with a bully, whom I once loved dearly, and take my spirit back. It was ten times harder than a year of chemo, but chemo gave me the strength to do it.
Cancer saved my life. And for that, I’m incredibly grateful.
In the News
As printed in The Spokesman Review, April 29th, 2001
By Nicki Serquinia, Special to In Life
“Losing a breast was nothing compared to this,” she says.
I pick up a strand of the young woman’s hair, slide my fingers down the length of it, past her shoulders, through the thick, neatly trimmed ends. A third of it comes away in my hand, like threads unraveling.
She is my first client since deciding to “specialize in cancer patients,” but it isn’t the first time I’ve felt the sensation of hair falling away like dandelion fluff. Four years earlier, in 1988, I also lost my hair due to chemotherapy.
It wasn’t until my friend, the late Mary Ann Waters, was diagnosed with breast cancer in 1992 that I decided to start seeing cancer patients as part of my hairdressing practice.
When Mary Ann called to tell me of her diagnosis, we made a date to go wig shopping together. But when I came to pick her up, she confessed that she had gotten nervous and gone without me. “What do you think?” she asked, as she pulled her new wig from a brown paper bag. I stopped in midbreath, trying to decide if I should be honest or upbeat and supportive.
Mary Ann was 52 years old, an English teacher at West Valley High School and an accomplished poet. I had been cutting her chestnut hair in a classic short bob. The wig was off-black, curly, and would have been better suited on one of the Marx Brothers. With much diplomacy, I said, “I think we can do better on the wig.”
We went back to the store, exchanged the wig for a short layered style in her color, then proceeded back to my house. As I cut her rapidly thinning hair down to about two inches, I looked at her reflection in the mirror and said, “Isn’t it nice to know that the person cutting off all your hair knows what this feels like?”
“You have no idea,” she said. I got out my scarves, showed her how to tie them, and I knew I wanted combine my hairdressing experience with my cancer experience to assist women with this process.
When my first client sees her hair in my hand and bursts into tears, I question my decision. Unsure of what to do next, I turn the chair away from the mirror and sit down facing her.
“I’m sorry,” she says, wiping her eyes with a Kleenex. “I’ve been told I have cancer. I’ve lost a breast. And I haven’t cried through any of it—until now. The breast is easy to cover up, you know? But this… how am I supposed to deal with this?”
She has luscious hair, a blend of at least 15 colors, all natural, ranging from pale blond to rust, cinnamon, gold, copper, and even a few strands of mahogany.
It’s thick and straight, so shiny that in full sunlight on a summer day, you’d have to squint to look at it. She doesn’t need to tell me that she has always been know as “the woman with beautiful hair,” that a major part of her identity, what has set her apart since childhood, is her hair.
Even so, I find it shocking that she considers temporary hair loss more devastating than having her breast amputated.
In 30 years of hairdressing, I have seen all kinds of people with all kinds of attitudes about their hair. Since I began seeing cancer patients, my biggest surprise has been how many women echo my first client’s sentiments.
Hair evokes tremendous emotion in our culture, and baldness even more. I once had a call from a man who was going to decide whether his wife would have chemotherapy “based on how the wigs looked.” Some women have refused chemo, choosing to die rather than lose their hair.
And some women shave their head before they begin treatment as a way to feel in control when so much of their life is out of control.
I’ll never forget the woman who, after coming in and picking out a wig to match her natural blond hair, went home and cut her hair about 2 inches long and dyed it bright fuchsia. Both the cut and the color were patchy and uneven, giving her a “caught in the eggbeater” look.
“Everybody hates it,” she told me, “but this way, I figure nobody will feel sorry for me when it falls out.”
A young woman, not yet 21 with metastasized cancer of unknown origin, comes to see me after 3 weeks in the hospital. I watch from my kitchen window as a car drops her off and pulls away.
Standing alone at the end of my driveway, she’s pallid and gaunt, teetering slightly. She is wearing a fanny-pack that dispenses medication every few minutes. I walk out to meet her and see foot-long waves of hair hanging off her shoulders. A nest of matted hair the size of a football rests between her shoulder blades.
She tells me that she has not washed or combed her hair for 3 weeks, hoping if she didn’t put any stress on it, it wouldn’t come out. I run a pick through a strand of hair, and more than half of it ends up in my hand. She winces, though it doesn’t hurt physically.
“My boyfriend is coming up from California this weekend, and I’d like to have some hair left,” she says, as if I can arrange that for her. And seeing how badly she wants it, I convince myself that I can.
I describe a cute, wispy haircut about 2 and a half inches long. She reluctantly agrees to let me wash her hair. “Just be really careful, okay?”
I lay her back in the shampoo sink, run warm water over her hair, then gently massage her scalp with sweet orange shampoo. My heart starts to pound as most of her hair slips from her follicles and mats about 4 inches from her head. The only thing I can do is cut out the mats, then even it up as she cries.
I wasn’t happy about losing my hair, but in the week before my surgery, my abdomen went from normal size to looking as if I were six months pregnant. My lungs filled with fluid and my temperature hovered around 103.
I was acutely aware that in the olden days, or if I lived on the proverbial desert island, I would have just plain died, probably within the week. Then, when I found out I had ovarian cancer, I realized that not too many years ago, there was no chemotherapy and no treatment for my cancer. I felt immensely grateful to have chemotherapy available to me and accepted the hair loss as part of the process that would make me well.
But often with breast cancer, the symptoms are less dramatic. The tumor may appear only on a gray film over a lighted screen in the doctor’s office. The patient feels fine and sees chemotherapy as an invasive poison rather than a gift. She may feel betrayed by her body for secretly growing cells that could kill her. And betrayed again when her hair gets caught in the crossfire of the treatment that can save her.
With recent advancements in nausea medications, lumpectomies and reconstructive surgery, some of the trauma can be minimized, but the hair loss makes it undeniably real, dramatic and public.
I didn’t mind being bald in front of my friends, but I didn’t go bareheaded in public. It takes a lot of energy to be stared at and I didn’t have any to spare.
Three and a half months after my hair started growing back, my hair barely covered my head and I retired my favorite scarf. My girlfriends wanted to take me out to celebrate. We went to a busy downtown lounge on a Friday night. I was self conscious at first, with my head uncovered in public for the first time in 9 months.
We found a table and within minutes a woman rushed over and told me how cute my hair was and asked where I had it done. I thanked her, more grateful than she would ever know, and gave her my business card.
My friends and I chuckled, then got down to the business of catching up on each others’ lives. Before long, a couple of men gravitated toward our table, beer bottles in hand. After several unsuccessful attempts at small talk, one of them tried one more time to be clever by asking, “So what else do you do besides hang out at Hayden Lake with the Aryans?”
Luckily, I was on my second margarita at the time. I grabbed his collar, pulled him close and said, “I just got done having cancer. My hair’s coming back and I think I look damn good.”
He stammered an apology, then soon left the bar. Though I was proud of myself, it could just as easily have crushed me on a different day.
After completing chemotherapy and radiation, my friend Mary Ann underwent high-dose chemotherapy at the University of Washington Medical Center. With high-dose treatment, the patient receives chemotherapy every day for five days, then stays in the hospital for four weeks while her blood builds back up.
All the patients on the unit are bald. People with hair—visitors and staff—become the minority.
What I discovered as a visitor was the incredible beauty of bald women. It was like visiting the set of a science fiction movie, “Planet of the Bald.” A planet of beautiful, doe-eyed warrior women in loose fitting cotton gowns, hairless heads, and a beauty in their faces that could only come from a blend of courage, fear, vulnerability and hope.
I was dumbstruck to think that perhaps I too, had looked so beautiful and powerful.
Over the next few years, as I saw 3-10 new cancer patients a month, I realized something far more complex than vanity is at the heart of the trauma of hair loss.
Often, women feel guilty for getting sick in the first place and putting their family through such stress. They feel as though they must protect them from the sight of their bare head, the constant reminder that they have a life-threatening illness.
Women are often afraid that their small children or grandchildren will be frightened by them. Or that their husband and older children would be embarrassed if anyone at the soccer game were to suspect they were wearing a wig.
One patient brought her adult daughter along to cast a vote in the wig selection but made her leave the room each time I removed one wig and replaced it with another. Several mothers have told me their teenaged sons “couldn’t take it”, if they were to see their mother bald.
So they keep their head covered at all times, lest they make someone else uncomfortable. And heaven forbid someone might think they were looking for sympathy.
For years I struggled to find the just-right word to define this experience that is, for some women, more emotionally painful than losing a breast. As I listened to and observed women in various stages of acceptance and devastation, one word finally emerged: shame.
And isn’t baldness the ultimate nakedness? In the movies, isn’t it always the buffoon or evil one who loses his or her wig at the climatic moment, revealing their true, hairless, impotent self?
If it’s a comedy, we laugh on cue. In a drama, it’s the moment of truth. We feel compassion for the character and relief that our own false faces and vulnerabilities are safely hidden away.
It has been 12 years since I had cancer and nine years since I began including cancer patients in my practice. Things have changed in that time.
A couple of years ago, I saw a bald woman in the mall, and one in a restaurant. Most recently, I was waited on by a bright and beautiful young woman at a beauty supply house who hadn’t a hair, or anything else, on her head.
Though they undoubtedly felt empowered by their decision, and I applaud them for their courage, most of us don’t want to make a bold statement while having dinner or buying a sweater.
“Fighting for your life,” has become synonymous with having cancer. That can feel pretty overwhelming on days when driving to the grocery store is a triumph, and the last thing you want is to be stared at, or even congratulated for your courage.
Most of us want to blend in, and we feel better with the softness and comfort that a wig, hat or scarf provides. Mary Ann said she preferred a wig “for negotiating a crowd.” And there is the practical consideration of staying warm.
So, to all my sisters who have or will experience cancer and hair loss: It doesn’t matter why you got sick, so don’t waste an ounce of energy trying to figure it out. Focus instead on getting well, and on all the things that are going right in your life.
It’s an amazing paradox that we often find our strength when we are most vulnerable, our greatest gifts in what looks like a tragedy.
And whether or not you choose to wear a wig, know that your beauty and strength lie not in your hair, but in your spirit.