Sep 02, 2006
I don't know why I lived. For a long time I believed it was because I drank organic orange 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 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 to16 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, weren't we?
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 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, or if I lived on the proverbial desert island, 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 I didn’t much care for.
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. 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 me 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. She had that vulnerable, “caught in the headlights” look. I 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. That's when the light bulb went off and I decided to combine my hairdressing experience and my cancer experience to help women through this process. That was 1991. In the next 25 years I saw 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 don't care about you. 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 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 became an anthem for cancer survivors, reminding us of what a “heartbreaker” cancer is.
Most of my clients came to see me before they began treatment. They were nervous, not knowing what to expect. It’s the hardest place of all, standing on the edge of a thousand unknowns. They usually had an image of Aunt Winnie’s Really Awful Wig firmly imprinted in their mind. They were visibly relieved when they saw 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 in 2005 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 tied 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 wanted 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 was depressing, seeing so many women who are newly diagnosed with cancer. It wasn't depressing at all. They reminded me every day of the beauty and tenacity of the human spirit. And I believe I offered them something they couldn'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 day!
I continue to wonder why I lived, and my answer continues to change and evolve. I came to believe that 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 to 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.