A Kick-Ass Fairy: A Memoir

by Linda Zercoe

  I didn’t have large breasts to begin with. What would be left if I had breast-sparing surgery? According to him, I also had the most virulent form of DCIS, which meant that it had the greatest chance of becoming invasive. I spent countless hours at home using Prodigy and a dial-up modem to do research on the “Worldwide Web,” which was then a relatively new thing. I learned that DCIS is a type of breast cancer that is confined to the milk ducts. It had not yet invaded the wall of the duct, so it was not invasive, a criterion for cancer. Did I have cancer or not? This question really bothered me for a while. I wondered what I should tell people. How many times would I have to explain what all this meant? Should I say I have precancer, cancer but not invasive, early cancer?

  I arranged to have my case presented at the hospital’s tumor board. Taking these steps and doing my due diligence helped me to think that I was in control. Unfortunately, I found the entire experience to be dehumanizing. I was a case, a specimen to be examined and prodded, as well as a statistical oddity, since there was no known history of breast cancer in my family. That’s not to say that a relative couldn’t have died an early death before it manifested itself. But I was only 36! Now I had entered this population of mostly unfortunate old people and the occasional young ones for whom you feel great empathy. They recommended a mastectomy.

  I determined from my research that since so much of what should happen was based on the pathology, I should get another opinion from a pathology expert, and I arranged to send my tissue slides. I made an appointment with another surgeon outside of my HMO provider group to get his opinion on whether to have a mastectomy. I already felt that my medical team in the HMO was incestuous—none of them would ever disagree with a colleague. But the second surgical opinion was the same. All roads were leading to having a mastectomy.

  How did this happen to me? Why me? I didn’t want to be one of them. According to the medical specialist’s consultation reports, I was the “lovely 36-year-old accountant and former nurse, mother of two, recently moved from New Jersey, with the bleeding breast defect.”

  I wasn’t really sleeping anymore. My mind wouldn’t stop. If there was any good news in all of this, I learned that since the cancer was not invasive, after a mastectomy I would have a 98 percent chance of survival. I wasn’t sure how this was meaningful information. Everything was happening too fast. All I could think about was that I was going to lose my breast. Part of me would be gone forever. Fear turned into grieving.

  There was such an enormous learning curve to climb. Decisions needed to be made about reconstruction—yes or no, and if yes, then what type and who should do it? When I tried to discuss this with Doug at the end of the day, he would glaze over. He couldn’t handle it. I felt very alone.

  Christmas was coming. I told the surgeon who did the original biopsy that I’d be able to schedule the mastectomy in March when financial reporting at the broker-dealer was finished. She looked at me like I was crazy.

  “This is something you don’t want to mess around with. The sooner you have the surgery, the better.”

  We told Kim. She was scared and noticeably upset. The only answer we had to most of her questions was “We don’t know.” We tried to be as comforting as we could be under the circumstances. It was hard to give assurances when you had no idea yourself.

  Christmas came and went complete with a hovering black cloud and homemade traditional Swedish glug prepared by Anki. She also came into our bedroom in the middle of the night, singing and dressed up as Santa Lucia with her head lit up by a crown of burning candles. This too was a Swedish tradition, apparently. I knew she wasn’t the angel of death—or any other angel for that matter. I wasn’t asleep, of course, but Doug was. I didn’t like her, and I still had to deal with her. One thing at a time, I thought.

  The rest of 1993 and early January was spent meeting with plastic surgeons, having more tests, and working. I was overwhelmed and depressed. I wanted to quit my job, but then how could we afford our mortgage?

  I finally selected a plastic surgeon and opted for the type of breast reconstruction known as a transverse abdominal flap to be done immediately after the mastectomy. It sounded pretty radical and had a long recovery time, but I was assured it would be the most natural feeling. For whom? I thought. The bonus in this surgery was that in addition to using part of the abdominus rectus muscle, they would use most of my abdominal fat. I really didn’t have all that much, even though Doug was fond of what he called my “Buddha belly.” I decided to add another positive to this scenario—why not have my other breast enlarged at the same time? Since I had ruthlessly been teased growing up about being flat-chested, I thought, Why not have a C cup?

  Surgery was scheduled for January 14. I discussed it with Jacqui, and she agreed to let me work from home on a project during my recovery so that I wouldn’t lose pay. I was worried about money, the surgery, Kim, my life, my career. I was also worried that Doug was not going to be able to be supportive, so I found for both of us a psychologist that dealt with cancer.

  Doug was acting like Dr. Jekyll and Mr. Hyde. He was astrologically and not coincidentally a Gemini, the twins, or more simplistically, a split personality. When Doug was Dr. Jekyll, he agreed to come with me to an appointment with a psychologist where we (I) could discuss our (my) concerns, since I thought what we were facing was enormous. When Doug was Mr. Hyde, he seemed to feel that, since I wasn’t dying anymore, what was the big deal—it was only a breast. I interpreted this as the usual response to my expressing a need—Get over it and Don’t bother me. And as usual, I felt hurt and angry.

  The psychologist was very macho, short and snappy. After hearing my list of concerns and hearing from Doug that he was “just fine,” he immediately determined that things had escalated to the point where the nanny had to go.

  “Doug, you are the person that has to fire the nanny. Your wife does not need to be more taxed or stressed at this time,” he said. “Rest and a peaceful environment is what are necessary before the surgery and the recovery afterwards.”

  He convinced Doug to come on his own for a few more visits after the surgery. I liked macho man. Meanwhile, I arranged for my parents to come to California during my surgery to take care of the children, and Doug fired the nanny, just like that. We would search for another nanny while I was recovering. I assumed Doug would take care of me.

  The six-plus-hour surgery went as expected. What I was not prepared for is what I woke up to. Oh my God—the pain, the multiple drains, the air stockings, the cycle of the pump, the tubes and oxygen. I had never experienced an extensive surgery. Cut in so many places, covered from neck to pubis in dressings, burning with pain. My bed was fully upright since my abdomen was so tight. I couldn’t figure out in the morphine haze how they’d flapped this muscle from my abdomen into my breast. Later I realized that they must have tunneled their arm up my abdomen under the skin.

  Doug stayed with me at the hospital for the most part, and was very loving and caring, even pressing the button for the morphine pump when I couldn’t. I remember many bouquets of flowers, cards, and well wishes from the friends and family who knew what I was going through. I felt really loved and really lousy. I also remember Jacqui calling the hospital room all the time, at any hour, with questions about work. For many days my stomach muscles were so tight from the reconstruction that I was stuck in a cashew shape—I couldn’t straighten out.

  When I could tolerate oral painkillers, I was discharged, though hardly ready to return to my world. And, since I was well enough to go home, naturally that meant Doug could go back to work. My mother would help me. I was instructed not to drive for six weeks, which didn’t matter since I could barely stand. The bandages and all the drains would be removed in a week. I could take a shower if I covered everything with plastic. I wouldn’t need any further treatments other than a follow-up mammogram of the left breast every six months. Case closed, and that’s that.

  My parents did their best. My mother was very attentive. She wou
ld help me safety pin the drains onto a clothes hanger and cover me in plastic wrap so I could shower. With me in my wounded nakedness, she finally seemed maternally bonded. My parents were not only caring for me but doing the nanny’s job as well, for which I was as grateful as I could be. Between the pain and the blur of Vicodin, I didn’t care about anything very much.

  In a few days, my drains were removed, and so were my dressings. Things looked pretty ugly at first. The muscle that was flapped over into my reconstructed breast created a large lemon-sized lump where I used to have cleavage. Everything was still swollen. They had created a new nipple on my reconstructed breast using skin from my belly. Did they have to use the hairy part? I thought. They said I could have electrolysis and have the whole thing tattooed to look more natural. For whom? I wondered again. By the way, they’d also needed to use a small implant for the reconstructed breast since I didn’t have enough abdominal fat. I felt slightly vindicated—imagine that! Doug seemed positive about how I looked and did nothing to make me feel bad or worse in any way.

  After my parents left, my sister Alane, who was a business owner and recently divorced, left her son in the care of friends and came to help me. With her visiting, I would finally have someone to really talk with. Being with Alane was wonderful, as usual. When she wasn’t doing everything to care for my family and me—we spent the time trying to understand how I could have gotten cancer. We even laughed, while splinting my abdomen of course. Then, unfortunately, she had to go home.

  After a month, I still wasn’t able to stand up straight and was disheartened when my friend and neighbor Lyn told me of a friend of hers who’d had the same surgery and was shopping at the mall two weeks later. Meanwhile, Jacqui was always calling for her daily pound of flesh. And by the way, when was I coming back?

  Then Lyn was diagnosed with breast cancer. I was horrified for her. I tried to forget about myself for a while to be there for her. We could walk this journey together, I thought.

  There were some differences in our walk, however. She needed chemotherapy and radiation. She didn’t work. She told everyone about her condition and as a result was showered with care. In contrast, I, true to form, didn’t “need” help. Most people still didn’t know about my cancer or surgery—or at least they didn’t admit to me they knew.

  I returned to work in March. I’d lost the opportunity at the broker-dealer; my boss gave it to someone else. But she had another opportunity for me. I got the job of the person who was given my broker-dealer post. Well, I thought, what are you going to do? As promised when I was hired, I was officially promoted to vice president (not as big a deal in banking as you might think). I went through the motions at work but was still very focused on my health crisis, or my new lack of health.

  At some point Doug expressed that moving to California wasn’t turning out to be what he expected. I understood. He had left behind his family, friends, the familiarity of his New York associates. He had all he could do to manage adjusting to the new environment, the people, the new office, proving himself to a new client. In addition, the months of November through March being the busiest time of year for his profession, let’s heap on a mega-mortgage, a wife of five years with cancer who is grieving and juggling a career, and a family that includes an angry teenager and a preschooler. He tried so hard to be positive.

  “We’ll get through this,” he would say.

  Chapter 10

  Looking for Normal

  April–December 1994

  Doug was so busy at work, he was even working some weekends. We hired a new nanny named Suzanne, who soon became a hit with everyone. She was cheerful and full of energy. She was also young, blonde, and athletic. She was just what we needed, a real Mary Poppins who blew in with an umbrella on the wind of a rainy day. Yes, it was still raining. The winter in California was not that cold compared to the East Coast but was bone-chillingly damp nonetheless. Our plywood ranch was drafty and I always felt cold.

  Doug was continuing to sporadically see the macho psychologist. I also contacted a therapist, whom I saw for maybe three visits. It was a waste of time. I wanted and needed specific skills and constructive techniques to live and think differently, and I got nothing. So I began reading voraciously about physical and mental health, living in the moment, about meditation and doing anything that I thought might be relevant. I started going to the spa for massages. I joined a gym.

  Meanwhile, things were busier than ever at work. I was selected for a team that was involved in the merger and integration of a newly acquired bank in Chicago. It was exciting work, but now I was also traveling back and forth to the Midwest on a regular basis.

  Suzanne was creative and planned loads of great activities for Brad. Kim also seemed to bond with her and was finally making friends. For her thirteenth birthday, she had a group of girls over for a mystery party and a sleepover. Many of her new friends shared choir and dance as a passion both in and outside of school.

  Kim had also discovered boys. She had a series of boyfriends and typically spent excessive amounts of time on the telephone. She was just holding her own at school as a C student but was not interested in changing to a private school. We’d have to revisit that again the next year.

  Having a great nanny eased my sense of guilt about working and traveling. But something huge had just happened to me and I didn’t think I should just forget about it. My friend Lyn was progressing with her chemotherapy and radiation. She had become a vegetarian and was tapping into all sorts of avenues to assist with her healing. And then it struck me. All of this had happened to my body, but I hadn’t really healed.

  I had no feeling in my reconstructed breast, my abdomen, or my newly enhanced remaining breast. I did not even get goose bumps in these areas. No one had told me to expect this. I remembered that the plastic surgeon, though skilled and knowledgeable, was male, and with him everything had been about the aesthetics. He was an artist. He’d created a new breast that would look and feel as close to a real one as possible—but only to others, not to me. The implant on the left side certainly did look good, but I had no feeling anymore in the unaffected breast. I’d completely lost sensation on both sides. I felt betrayed and very angry. No one said there’d be a loss of feeling when we were discussing the left breast augmentation. If they had, I would have evaluated the pros and cons quickly and opted not to do it.

  I beat myself up for my vanity and realized I had no one to blame but myself for this irreparable mistake. Since my breasts played an important role for Doug and me when making love, I had another loss to mourn.

  Years before, when I was in nursing school, we had learned about the stages of grief as promulgated by Dr. Elisabeth Kübler-Ross in her book On Death and Dying. Her theory was that with any significant loss, a fatal diagnosis, or the death of a loved one, most people go through five stages of grief. The first stage is shock, denial, and isolation; the second stage is anger; the third and fourth are depression and bargaining, respectively; followed finally by the fifth stage, acceptance. But it’s not a simple progression. People who are grieving can go back and forth between the stages until they finally reach acceptance—and even then, they can backslide.

  I realized that of course I had experienced shock when I first found out about the cancer. Then, when I wanted to delay the surgery until I had finished the financial reporting quarter at work, I was in denial. Denial also played a part in not wanting to tell anyone. Now that I was back to work and acting as if nothing happened, I was still in denial. But something had happened, and every time I saw my scarred body or was reminded that I had no sensation, I was angry—stage three.

  I was also at the beginning of the bargaining stage of my grief, since I was trying to ensure that this wouldn’t happen to me again. So I started to mobilize. I went to a talk given by Dr. Susan Love, who had written the quintessential bible of breast cancer at the time, Dr. Susan Love’s Breast Book, to learn more about the latest news on the disease. I wanted to know as much as possi
ble.

  I ordered the videotapes of Bill Moyers’s series Healing and the Mind to find out more about new theories of the mind-body connection (America’s version anyway). There was a segment of the program that discussed how your thoughts and emotions create chemicals that affect every cell of your body. There was also a segment about Chinese medicine and one on living in the moment. The program also discussed scientific studies that showed that breast cancer patients survived longer if they were involved in a support group. It included a segment of a live support group. Because of their common diagnosis, they could be real with one another. They didn’t need to wear a mask for the world and could discuss their fears and grief in a safe environment. The last segment introduced a place called Commonweal in Bolinas, California, which was a retreat for healing when dealing with cancer. I sent away for the paperwork and applied.

  A few years before this, I had read Gilda Radner’s book It’s Always Something, a candid account of her struggle with ovarian cancer and her remarkable ability to stay upbeat, which she finished writing only a month before her death. I had always been a big fan of hers, having watched her often on Saturday Night Live. The book also recounted her and her husband Gene Wilder’s journey of being diagnosed and then joining an organization started by Dr. Harold Benjamin called the Wellness Community. This organization provided support to people dealing with cancer and the significant person providing care and support to the cancer patient.

  As luck would have it, there was a branch of the Wellness Community not far from our home. Soon after watching the Moyers program, Doug and I joined the Wellness Community for a weekly immersion into the world of cancer. I was assigned to a participants’ group and he to a support persons’ group. We became members of the village called Cancer.