A Kick-Ass Fairy: A Memoir (9 page)

In November Jacqui informed me that she wanted me to replace the current controller of the bank’s retail broker-dealer. She asked me to accompany her to a business conference in New York City at the end of the month for a few days. I jumped at the chance to escape bedlam. I fantasized about the ability to sleep or just to be able to read on the plane. Four days of no whining, complaining, or driving was very appealing. We were going to stay at the Marriott Marquis in Midtown. On the night we arrived, I was elated to be back on my own turf. The real-time experience of the noise, the people, the garbage—all were exhilarating.

At bedtime I noticed that my right arm and armpit were tingling and really bothering me. I thought that maybe the cause of this discomfort was the fact that I had just schlepped through the airport carrying my heavy garment bag packed for every uncertainty. Naturally, Jacqui had a small two-wheeled suitcase. I started massaging my arm, feeling around my armpit and landed on my right breast, where right below my nipple was a big lump.

The date was December 2. I thought to myself, you have got to be kidding. I waited a bit but the lump was still there after rechecking several times. I had a horrible sinking feeling, and then a sense of dread. Then panic crept into my mind. I knew something bad was going on. I called Doug. He told me it was probably nothing and to stop worrying. He told me that if it was still there and I was still worried, I could see a doctor when I returned to California. I didn’t know if he wasn’t concerned or if this was his way of comforting me. What I did know was that he really didn’t help at all. I could never tell what he was thinking. It had truly never entered my mind that I might be a hypochondriac.

The next day Nancy came to the city, and I met her for cocktails in the hotel lobby and shared my discovery. We were both worried. We even cried in between sips of wine. A few more glasses was all it took to assure each other that since I was only thirty-six, maybe it was only a cyst. Besides which, we rationalized, hadn’t I just had a perfectly normal mammogram one year before? I remembered reading somewhere that approximately 80 percent of all lumps found in the breast are benign. After seeing Nancy, I felt a little better, and I was off to see Kiss of the Spider Woman on Broadway.

That night, while I tossed and turned, I recalled that I had felt this lump about six months earlier, before we had moved, but I could not remember if that was real or if I’d dreamt it. After all, I thought, it had been such a crazy time. How scary to think about the implications of whether you can’t remember what is real and what’s not. Aren’t most working mothers this busy? As it turned out, in New York, I escaped bedlam only to be volleying between feelings of horror and trying to assure myself that everything was fine. It’s funny how ordinary bedlam can suddenly become appealing, even preferable.

Chapter 9

December 1993–March 1994

W
hen I wasn’t working, all I could think about was the lump. I felt like I was becoming the lump. Within a few days of returning home I saw a doctor, and he immediately scheduled me for a mammography appointment. On December 8 I went by myself to radiology. They put a metal bead on the lump with adhesive, did the mammogram, and told me to wait in the dressing room. I waited for what seemed like forever in that little curtained cubicle. When the technician returned, she said that the radiologist wanted to take magnified views, which she explained were more detailed.

I knew deep inside that the inevitable was just around the corner. I wasn’t a negative person—I just knew. After they were done with the magnified view, they wanted to do an ultrasound. I am sure I appeared calm and reasonable on the outside. Inside, I was terrified and started praying harder for this to be OK, a fluke, and for strength no matter what.

I was brought into the doctor’s office/reading room where the radiologist, the MD, met with me and told me it was not a cyst. He pointed out on the films where it showed microcalcifications (translated to little points of light, like stars in the night sky) in the area of the lump, a galaxy contained within my breast, the Milky Way without the milk. He suggested that I should follow up immediately with my doctor to schedule a biopsy. I called Doug from the radiologist’s office. He sounded very upset. I could tell this time.

Doug and I met with the surgeon, and two days later I was scheduled for a breast biopsy. I hoped that I would have enough time to recover and be back at work by Monday. The surgeon explained that she would do a peri-alveolar incision for the biopsy and possible lumpectomy so that there would be no visible scar. The whole process seemed like driving fast in a well-cushioned bus around hairpin turns with no idea where you were going to end up or if you would just crash. I just had to believe I was going to be all right.

By this point, I had told my boss, a few of my friends, and my two sisters. Talking about possibly having cancer wasn’t that prevalent in 1993, certainly not at all in my mid-30s age group. I was afraid to tell my parents. I knew they’d be upset. And for some strange reason I was embarrassed, thinking on some level that I was letting them down, giving them something to worry about. They were not usually the ones who did the comforting. I was.

I went to bed the night before the biopsy thinking that the next day we would either celebrate or my life would never be the same, and I didn’t have any idea what that would mean. I didn’t sleep. What allowed me to face the fear of that day was a leap of faith. I just had to trust in God and believe that I’d be all right. Even though I was a control freak, I still had faith.

I woke up in the recovery room still drugged and fading in and out of consciousness. Doug was there, leaning over the bedrails holding my hand, the look of helpless love in his eyes. I smiled inside, thinking that at last we were a team. Then the surgeon came in wearing her scrubs and hair-covering cap. I was still a little groggy. After asking how I was doing, she told us that the final pathology was not back yet but she was certain that it was cancer, possibly ductal carcinoma in situ, or DCIS, a noninvasive cancer. She’d done the lumpectomy but doubted she’d removed it all because all the tissue of my right breast felt “gritty.” She said the tissue she removed was gray and had tentacles.

It sounded ugly.

She said I would probably need a mastectomy but we would know more later in the week when the final pathology came back. I thought, then hoped, and then prayed that I was having a horrible nightmare from the anesthesia. I wasn’t. I was crying, sobbing even. But then, I noticed, so was Doug. I had never seen him this upset. This scared me as well.

I stopped crying. In fact, after that I wouldn’t let myself cry again for a long time. I figured both of us couldn’t lose it; I needed to be strong. What were we going to do? Months later, the surgeon told us that the anesthesiologist had said putting me under for this procedure was like trying to put down a racehorse. I even talked while I was knocked out. I couldn’t let go of control even during anesthesia.

That night I was emotionally numb. I had a tight, white elastic dressing on my right breast and was having horrible pain—so much so that I called the doctor (she had given me her home number). She said to make sure to take more painkillers; she would be away on vacation and Dr. So-and-So could follow up.

We didn’t tell Kim anything at that time, although I think she knew something was going on. She was very self-absorbed during this period and quite nasty. Brad was too young to understand. I was scared and sad but well-practiced in putting up the “I’m just fine” front. I told my parents and siblings what was going on, but at that point, I still didn’t know what any of it meant going forward.

The next week I went with Doug to the on-call surgeon and she removed the dressing. Not only did we find out that I was allergic to the adhesive of the bandage so my skin was all blistered, but also that my incision was split open from the pressure of a large “liver” clot that had formed under the incision. It was visible in the hole like a purple alien eye and was bleeding, slowly weeping clear, deep red tears. A new dressing was applied with different tape and I was given wound care instructions and a box of supplies. We went home to await the pathology results that would start the ball rolling on how to deal with the liver clot and the rest of the breast.

In the meantime, I returned to work at my new location, in my new position, though I wasn’t that excited about it anymore. I couldn’t focus and didn’t feel on top of my game. My boss knew what was going on in my personal life, but work was still work. I didn’t want this setback to affect my career. So I became an actor, going to work and putting on my game face. I was still glad to be working since it gave me a break from obsessing about everything else.

Doug was also back at work at his demanding job and somewhat emotionally absent, as usual. The stress with Anki, the Swedish nanny, was escalating. She didn’t understand or agree with my firmness with my daughter, which she demonstrated with eye rolling and tsking sounds. Then we found out that she was locking Brad in his room. There were dried puddles of urine on the carpet just inside his bedroom door. I kept praying to God for the strength to deal with all of this. Meanwhile, I just wanted to run away, scream until I had no voice, hide just to be let alone.

I soon learned that the final pathology report indicated that the tissue they removed was the noninvasive form of breast cancer, DCIS. Unfortunately, there weren’t clear margins on the specimen. This meant that they would have to go back in and surgically remove more tissue. It was now the time to meet with all the specialists to determine how to treat the remaining breast.

Doug accompanied me to meet with the radiation oncologist. When an older man in a lab coat entered the examination room, we rose. He extended his hand and introduced himself to my husband but not to me, the patient. He said the bottom line was that I could have “breast-sparing” surgery to remove the rest of the affected tissue and then radiation therapy. But since I would have what was referred to in medical parlance as an “acquired breast defect” from the missing tissue and the blood clot, he suggested that I might want to consider a mastectomy, with or without reconstruction. Then he continued on with a spate of scenarios and statistics that seemed to me like a canned presentation. He lost me at hello. I was depressed. I felt like I became the woman with the acquired breast defect, or was now just plain defective.

Doug and I next met with the recommended oncologist. He told us that breast cancer was a relatively slow-growing cancer and that this tumor had probably started ten years earlier. I remember thinking that ten years ago was exactly how long it had been since Dave died. Interesting, I thought, vacillating between horror and detached objectivity. He recommended a mastectomy but said I would not require chemotherapy.

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.”