A Kick-Ass Fairy: A Memoir (13 page)

Between the second and third week after the first chemo, my hair fell out in handfuls one morning while I was taking a shower. I was filled with sorrow. All of my curly brown hair was on the floor of the shower. It looked like a dead poodle. I was home by myself when this happened. I called and left a voicemail message for Jacqui that I was not going to be in that day. She called me. I really resented her intrusion and thought that my trials were becoming fodder for interoffice gossip. It never occurred to me until many years later that she really cared about me, plain and simple.

When Doug came home from work, he helped me to shave off what hair was left on my head. We were both terribly sad, but we reminded each other that it would grow back. I didn’t realize how cold your head could feel without hair. Even the pillow was cold. Doug had male pattern baldness, so now I knew what his head felt like.

I had purchased some of those stretchy terrycloth cancer caps, which were actually very comfortable. I had always been told as an adult that I looked like Sigourney Weaver. Now, I just looked like her in Alien 3. How appropriate, I thought.

The loss of my hair became the outward manifestation of this disease, symbolizing to my children that Mom was sick. It was around this time that Brad, just barely 5, asked me, “Are you going to die, Mom?” I was surprised that he was thinking in these terms. I told both the children that I was doing everything I could do so that I wouldn’t, but that God decides when it is time for each person to die. I told them that they could ask me any question, at any time, and that I would answer their questions as openly and honestly as I could.

I can’t imagine what they might have been thinking or how scared they were. But I decided that I’d try to be as normal as possible and not ignore their fears. I explained that the drugs must have been working since they were strong enough for me to lose my hair, even if only temporarily. I think that explanation helped Brad in a concrete way. I was trying to be a good mother, but I was not sure that I was.

In October, I had chemo number two. I had to argue with my oncologist about getting a better antinausea medication—I was not going to repeat the retching of the first time. He told me that he could prescribe Zofran, but that it was very expensive, about $150 per pill at the time. “So what,” I said. I was insulted that he had made assumptions and not even offered it to me the first time. As it turned out, our prescription plan paid for most of it. I was starting to realize that I didn’t like this doctor. The Zofran really helped. I scheduled the remaining treatments for Fridays to minimize my downtime at work.

Doug came with me to the second treatment. I decided that I needed to have some sort of ritual around the process of chemo. So, Doug started bringing a “picnic” lunch from a great deli near the oncologist’s office—my last big meal before the drugs kicked in and my appetite left for a couple of days. I also decided that I wanted some sort of memento to remember the experience, like a trophy for getting through it, no big deal. I started collecting a whimsical Mary Engelbreit teapot ornament after each treatment.

Later that month Paul, a friend from our days working in New York, came to visit us. A few years earlier Paul had been diagnosed and treated for a brain tumor and subsequent metastasis to his spine. He’d had quite a harrowing experience but was doing just fine now. He wanted to come and be with me and accompany me to my chemo. I really loved this guy. We used to have so much fun working together. We laughed all the time. He and his wife married one month before Doug and I had. We were all friends.

Paul and his wife arrived in time to accompany me to my third chemo. It was great being with a good friend who had been through all of this himself. We compared cancer stories. While I was receiving my chemo treatment, I told him how hard it was juggling marriage, the kids, my career, and being sick. He asked me if I ever thought about what I would do if I had one month left to live. What if I had only one week left to live? For the rest of the treatment time we spent coming up with Linda’s Life Priorities. We finally came up with the following list (priorities are not necessarily in order):

Linda’s Life Priorities

To live, to have health

Spend time with children

Spend time enjoying marriage

Self-time: Baths, reading, listening to music, doing nothing, time to create, playing piano

Time with family and friends

Grow in faith

Find inner peace

Have more fun

Travel

Independence

Well lo and behold, we immediately noticed that working was nowhere on the list. I knew this was going to be a huge personal struggle for me. I had worked very hard for my career. I was afraid to let it go, since I vowed to myself after Dave had died that I was never again going to be totally dependent on another person for my income and identity. I was also worried about the financial implications of leaving my career, even if it was only temporarily. But I knew that as long as I continued to work there was no time for my real priorities. I decided to discuss this realization with Doug after our guests had left.

When we finally talked about it, Doug was not exactly supportive. He told me that if I stopped working we would immediately have to move to a smaller home, fire the nanny, etc. I thought how all these changes, let alone all the work involved, could possibly be good for my health or my children’s welfare. I felt like he valued money more than my life and me. I was starting to sound like my therapist.

Once again, I was hurt and disappointed. I decided to not rock the boat, but I was uncertain about what I should do. I discussed it with Lyn, and she suggested that we should pray that God would make it abundantly clear what it was that I should do. In hindsight I think it is interesting that I gave Doug and the universe the power to make my decisions for me. Was it because I was too beat up?

I had been told that the effects of the chemotherapy were cumulative. Soon after the third treatment, I felt I was becoming exhausted. Doug was managing everything. I went to work, came home, and collapsed. Doug came with me to the doctor and chemo appointments, went to work, came home, fixed dinner, cleaned up, gave Brad a bath, helped with homework, and then had to deal with me. He was trying his best to be supportive and juggle all the balls.

But then he raised the question again. “What about me?” He began to voice his unhappiness with the situation. He told me, knowing what he knew now, if he had it to do over again, he would never have married. In other words, in my words, he wouldn’t have married me. I felt bad for him. He never signed up for this either. I know I was too self-absorbed to thank him enough for everything he was doing. He felt bad too, and had only me to complain to. This was not a good situation, when my life was the problem. I must have sinned a great deal.

Chapter 12

November 1995–February 1996

I
t was November. I was depressed as usual, hairless to the point that I had lost my eyelashes; my eyebrows were soon to follow. I would look in the mirror and could not even recognize myself anymore. I was fading away. I felt unloved by my husband even though he was doing everything he was capable of to help me—albeit like a detached servant. My sister Alane was scheduled to spend Christmas with us, but that was more than a month away. I needed connection.

The good news was that after the next treatment, the most toxic of the chemo treatments would be over. Then I would have only eight more to go. The radiation oncologist didn’t want to start treatments until the Adriamycin cleared my system, since it magnifies the effects of radiation. I was scheduled to start those treatments in December.

In the middle of the month, I had the last chemo injection of the “red devil,” rested over the weekend, and then flew to New York on Monday with my boss and a co-worker for an industry conference. On the plane I thought, What more could I possibly have to despair about? Before one dinner in New York, Jacqui and my co-worker came to my hotel room and were startled to see me without my wig on. They were actually stuttering. What I thought I saw in their eyes was Who do you think you are kidding? Suddenly I felt like a fool. What the hell was I doing here? I should be home taking care of myself. When we flew home at the end of the week, I was so sick and feverish that the flight attendant took pity on me, put me in a first class seat, and kept me well supplied with tea. I was delirious the whole trip.

After arriving back at home, I visited the oncologist for the fever and had some blood tests. My regular oncologist, Dr. L., was on vacation so I saw his partner, Dr. S., instead. I liked him better. He sent me for a chest X-ray and I was diagnosed with acute bronchitis/borderline pneumonia. The doctor scheduled four days of IV antibiotics, which I could do as an outpatient. Taking some sick time from work to recover, I soon started to improve.

When I went back to work, I met with my boss, who was surprisingly very receptive and generous about the idea of my spending more time working from home. Maybe it was having seen me bald. Even though I felt conflicted about continuing to work, I thought the worst was over. In the spring I would be on the other side of this. For the time being, I just needed to hang in there.

A new person joined my support group at the Wellness Community. Her name was Terry. She was younger than I was, full of hope and beaming about her recent engagement and marriage plans. Unfortunately, she had been recently diagnosed with metastasized cervical cancer, had had a hysterectomy, and was about to start chemotherapy and radiation. Weekly, we sat rapt as her journey unfolded—a botched surgery, the subsequent diagnosis of a cantaloupe-sized tumor of the pelvis, more surgeries, the side effects of her radiation, the seesaw relationship with her fiancé.

Meanwhile Barbara, who had been in my first group a couple of years before and was now the veteran in this second group, had just been told she had a significant recurrence of ovarian cancer. At this time, everyone in the group was female and no one had hair except Terry. Everyone’s stories were so dramatic. I rarely talked, other than to support others. I felt as if I needed to go to this group every week just to remember that I had cancer. I had come to see chemotherapy as just something I did. I never allowed the thought that I was battling for my life to sit for more than a second in my consciousness. After all, my treatment was termed “adjuvant” therapy. Its purpose, I was told, was to “buy insurance” against the risk of recurrence.

Within a couple of months, Terry with the cantaloupe tumor lost her hair, was married, and died.

Terry’s death really shook all of us in the group, including me. It felt as if the grim reaper had come for a visit and was still lurking. Most of us started expressing more fear and less optimism. Her death made cancer real, very intimate. I had never felt sick from the cancer. I was sore from the surgery, yes; rotten from the chemo, yes. The cancer was a lump, a bump, words on a pathology report or something discussed abstractly. It was not advanced enough in my case to cause any symptoms. The rapid escalation of my new, now dead, friend’s disease forced me more than anything up to this point to face the reality of cancer—that cancer is a killer. It could kill you, duh. It could kill me. But even still, I just couldn’t believe that it could be true for me. The idea was not something I could embrace. I was not surrendering. I refused to become defined by cancer. I didn’t know then how lucky I was to be able to think this way.

Thanksgiving came and went. My illness was taking a toll on Kim. She retreated into the drama of high school and boyfriends, who were still mostly telephone relationships. She was always angry and nasty to us—and therefore was always grounded as punishment. We didn’t know whether this was “normal” adolescent behavior or a way of dealing with my illness. One time Doug had to remove the door from her room when she wouldn’t stop slamming it in a rage. We had a temporary respite from the hostility when she met with the priest at her religion class and asked if her mother could receive the Sacrament of the Sick. She and the priest made all the arrangements.

We all went to the church. The service was beautiful and we each received the sacraments. The experience felt holy and peaceful. I found out that you didn’t need to be dying or taking your last breath to receive this sacrament, formerly called “extreme unction.” Apparently, sometime in my life between catechism class and actually getting cancer, the rules had changed.

The service bound our family in a new and healthy way. I began to see my teenager a little differently after that. She was crying out for help and had found her faith. She joined the church choir and, of course, there she met another boyfriend. But at least she was turning to a positive place for solace. I felt hope.

On weekends, I began to focus on working on my dollhouse project. Brad spent time helping me with it, though Kim wanted no part of it. Brad and I ran the electricity for the lighting. We carefully painted ceiling reliefs, laid parquet floors, pasted and hung wallpaper. I started needlepointing a rug and began buying the furniture. Within the year the dollhouse was becoming a real haven, a peaceful refuge from my life. To my surprise, I realized that the whole house was decorated in shades of pink. I never really cared for pink; I liked red. This was all done before I was aware of the pink ribbon for breast cancer.

In early December, I met with the radiation oncologist, was tattooed with four little blue dots around my left breast, and began radiation. The radiation treatments were scheduled for 2 p.m. Monday through Friday for the next six weeks. As horrible as it sounds, I thought, at least I won’t have any choice but will be forced to leave work early every day.

The first four days of radiation went off without a hitch. The fifth day I had an appointment with the oncologist, blood work, and was to start the first dose of the other chemo drug cocktail, CMF. When I met with the oncologist—my regular one, this time—even though I felt better after my recent bout of bronchitis, he told me my lungs were still congested and he wanted to schedule another X-ray. While he examined me he made conversation, telling me that he had just returned home from a trip to the Himalayas.

“Did you read or hear about the people that were killed in the avalanche?” he asked.

“I think so.”

“That was the day after I was in that same area!” he exclaimed.

He just went on and on about what a pivotal experience this was for him.

He concluded, “I could have been the one that was killed in that avalanche, just one day before.”

I could not believe I was hearing this. He was an oncologist, a specialist in cancer and in the sunset of his career. What did he think his patients’ ordeals were all about? Didn’t he connect that they were dealing with life-threatening illness? Was he that detached and cold hearted? I suddenly realized that, as far as I was concerned, he was clueless. I’d never really liked him to begin with, so I decided that I was going to fire him on the spot.

“Dr. L., I’m feeling uncomfortable. I think we have a personality conflict, and I want to switch to one of your partners for the remainder of my therapy.”

He seemed stunned. I explained it was not a reflection of his technical skills. Quite frankly, I did not care if I hurt his feelings or what he thought. I finally laid claim to the fact that I was what was important, probably for the first time in my life. And I was more important than being perceived as being nice. Nonetheless, I was still feeling a little shook up when I went off to my radiation treatment. Within the week I made arrangements to be seen by Dr. S. for my next appointment and the foreseeable future.

The following week my breast felt tingly during the radiation treatment. The morning of the next day my breast was a little swollen, and during that day’s radiation treatment I had a new sensation—my breast felt like it was frying, like an egg, burning and sizzling.

Frightened after the treatment, imagining water boiling in a microwave, I asked the radiation oncologist, “Could this have anything to do with the saline implant?” (This was my enhanced breast with the implant, still intact after the breast-sparing surgery of the lumpectomy.)

He tried to reassure me. “We have radiated hundreds of breasts with implants, and other than the possibility of an increased risk of capsular contraction, there is nothing to worry about.”

By the next day, the swelling of my breast had increased dramatically. It was hot and extremely tender.

After I changed into the gown before the treatment I told the radiation oncologist, “I am very concerned that the radiation is causing this swelling and pain. I want to defer any more treatments until this feels better. Besides,” I continued, “I have a fever of 102º.”

After examining me he agreed—as if it were his idea—and told me I should see my oncologist and be evaluated for antibiotics, then reevaluate continuing radiation at the end of the week. That day I was started on another four-day course of 1 gram of IV Rocephin, an antibiotic. Since I still had a bad cough, they threw in another chest X-ray as a bonus.

By the end of the week, my breast had swelled up to what seemed like football size. I did not think the pain could get any worse, but it did. It felt like it was being torn apart by a knife. I didn’t know what to do to escape it. The antibiotics didn’t seem to have any effect. That Friday night, the second day of antibiotics, I couldn’t stand it anymore. I was writhing. Nothing could distract me. Taking two Vicodin pills every four hours didn’t help. At my insistence, Doug called the plastic surgeon that night and got his service on the phone.

When the plastic surgeon called back, Doug asked him, “Do you think this pain could possibly be caused by the implant?”

“I doubt it, but come in and see me early next week,” he replied.

That night I passed out from the pain.

I awoke the next morning, Saturday, in so much pain I could have jumped out of a skyscraper just to escape it. I called my surgeon at her home. She came over to our house right away, examined me, and told me to meet her at the hospital for a needle aspiration of the breast to figure out what was going on.

When we got there, Doug and the surgeon stayed with me, each holding one of my hands, while the hospital radiologist used an ultrasound to examine my flaming breast. This was torture, hell, up close and personal. I said the Rosary silently while this was going on. They told me they saw a collection of fluid behind the implant and wanted to do a guided needle aspiration of the fluid. There was a risk that the implant could be hit, causing leakage or deflation, in which case another surgery would be needed to replace it. At this point, I didn’t care. Under the guidance of ultrasound, with a steady hand and a very long needle, the radiologist collected 80 cc of cloudy yellowish fluid which was then hand delivered to the lab. They were going to test it for bacteria and do cytology tests to determine if I had a cancer recurrence.

I was deeply grateful for the personal attention of my surgeon that day. Unfortunately, she was leaving the next day for a two-week vacation for the Christmas holiday. The radiation oncologist left me to the medical oncologist. The plastic surgeon didn’t think it was the implant. I didn’t know how I would get through the day with no answers and no relief. I guessed I was in charge of my medical care. And since no one else was, I felt adrift without a paddle.

Sunday I had the fourth and final infusion of the IV antibiotic. I still had a fever of 101º, and my breast was still extremely painful, but maybe less so, and still hot, but maybe less so. The swelling was unchanged. Maybe I was just getting used to the pain, but since I didn’t want to jump out of the skyscraper anymore, I thought maybe that it was getting better.

That night we were supposed to go to a holiday party near our home that was hosted by Beth, another woman I really liked from my Wellness Community support group, who just happened to have recurrent multiple myeloma. I wanted to go for just a little while—to see my fellow group members would give me inspiration and strength. Wearing clothes hurt though, and we didn’t stay long.

The next day, Monday, the pain was coming in waves, like labor pains. My chest wall and sternum hurt. I called in sick for the next few days, in advance. I was due to start two-plus weeks of vacation on Thursday, anyway, and besides that, I could barely manage to talk. That same day, I had appointments with the oncologist, radiation oncologist, and the plastic surgeon. With daily multiple doctor visits, it seemed as though my new career was being a cancer patient.

I was switched to IV vancomycin (the superantibiotic at the time) 1 gram IV for the next four days, since I was still running a fever. The radiation oncologist wanted to continue to “hold” the radiation treatments. He thought that I had radiation mastitis, an inflammation of the breast caused by radiation. The plastic surgeon, who for business reasons was now doing cash-only vanity surgeries, examined me and repeated that he didn’t think it was the implant causing the problem. He thought it was possibly radiation mastitis as well, and was going to confer with an expert colleague of his at Emory University.