It's Always Something (11 page)

The night before my first chemotherapy, I was lying in bed and Gene walked in the doorway of my hospital room. He was carrying a little pink umbrella with shoes tied to it.

W
hen I finally came home from the hospital I felt like the inside of a radio. A head of a Hollywood studio once gave me a radio that you could see the inside of because it was clear plastic and lit with pink neon inside. You could see every intricate wiring detail, hot and exposed. That’s how I felt. The toxicity in my body from the chemotherapy made me feel like those swirling geometric patterns and designs of the 1950s—you know, the red vinyl furniture with black pianos on it, and neon lights and chrome watches with geeky things sticking out of them. It felt kind of like a mixture of everything that has come back as nostalgia now—leopard skin and black patent leather with red lightning jags on it, Jimi Hendrix guitars and felt skirts with musical notes and poodles on them, fins and wings on fuchsia Cadillacs, pink and black shoes that are too pointy, Melmac bowls and Max Headroom, neon yellow toreador pants and gold lamé bar stools. That’s what chemotherapy felt like in my body when I came home—like there were constant electrical currents from the 1950s running through me.

In the hospital I was told that I was to have nine sessions of chemotherapy spaced approximately three weeks apart and involving two major chemicals, called cisplatin and Cytoxan. The number of treatments had been determined through experimentation that is constantly being revised. With only six sessions there was recurrence of cancer, and with twelve the side effects became too severe. I had my first treatment before I left the hospital. So not only was I coming home as someone recovering from major surgery, but I had just been zapped with chemicals to kill any cancer that was left in my body. That’s all the dreaded “chemo” treatment really is: doses of chemicals—drugs, medications—administered intravenously or in shots or in pills that have been found to kill cancer cells. Of course, a lot of healthy cells get knocked around in the process, causing side effects like hair loss, nausea, fatigue and lowered blood counts, but the healthy cells regenerate. The hope is that the cancer cells won’t.

There are many different types of cancer—and many different types of cancer cells. Different chemicals are used in various combinations depending on the cells to be attacked. Cancer cells are actually regular cells that are dividing too quickly. These chemicals are toxic to those quickly dividing cells. My electrical feeling was a response to all the medications I had been on since my surgery. Besides the chemotherapy, I was taking painkillers and on top of that my hysterectomy had created hormonal changes.

I came home with the intensive care nurse who had been assigned to give me all my treatments. She would administer my chemo in the hospital for each of the nine sessions. My internist had asked for her to do this and to oversee my case. Her name was Jodi. She was tiny, just about five feet tall, with dark black hair and glasses. She is a skilled and committed nurse and she took on my case with a vigor and devotion that were amazing. She made herself available by phone for Gene and me to talk to at any time. She arranged and coordinated all my doctors’ appointments and hospital visits and kept complete records on my progress. The day I came home from the hospital, she leaned down beside my bed and gave me a little program to follow. She told me to try to get out of bed every day—to get dressed and try to write something in a journal. She encouraged me to make plans to accomplish a small task. Each day home, I’d feel a little better. The electrical feeling began to leave my body and the nausea I’d had subsided. I would try not to look in the mirror, but even so I would lie in bed and get flashes of what I looked like. I thought,
This can’t be. It can’t be happening to me. How could this nightmare be happening?
But every day I would get up and try to go into our pool, even if I could hardly move. Once I got in the water I felt looser, better. Gene paid to keep the backyard pool heated through the winter months. I didn’t go in if it was too cold, but we had it so hot that most days it was like a bathtub. I would go from there right into a warm bath. This could take me about three hours because of how frail I was. I’d be dragging myself in and dragging myself out. Then I would sit and write in that journal—sometimes just saying, “I swam, I took a bath, I got dressed today.” Then I’d crawl back into bed, breathless and exhausted.

Our friend Grace came from Connecticut to live with us in California, to take care of me and the house so that Gene could keep working on his writing projects. The studio had told him they’d postpone the movie in France until he was available, but after a short time, they went ahead and made it without him. Grace made our bedroom into the most beautiful fantasy place. Gene had bought a new mattress for the bed and she bought new sheets with ruffles on the pillows. She bought a fresh red-and-blue quilt she had found in Connecticut. Grace and Gene bought new curtains and there were always fresh flowers and a sweet breeze. Then Grace got me wonderful books to read—like
Cold Sassy Tree,
about a family in a place called Cold Sassy Tree, Georgia, at the turn of the century. The characters were wonderful, and I loved that book. I lost myself in the novel. The minute I finished that book Grace was there with another. She used to be a librarian. She brought me Betty Rollins’s book about her fight with breast cancer. Grace herself had had uterine cancer eight years before so she was my support group. With Gene and Grace and Jodi, I had wonderful love and comfort around me, not to mention Sparkle, chief personal watchdog.

Months later Grace told me that the day I came home from the hospital, she was frightened. When she put me in my bed, she had to help me undress like a baby. I felt so tiny. Afterward Grace went to her room and cried for a half hour. She thought I was going to die. She had never seen me so weak and hollow-looking.

In the meantime, Gene was giving the performance of his life. It was always very important to Gene that he get his sleep, and I was careful not to wake him up in the middle of the night. But when I came home from the hospital, he said. “Anytime you want to get up in the night or you are scared, or afraid about something, just wake me up and we’ll have a cheese party.” Whenever his dad was in a good mood, he would say, “Let’s have a cheese party.” It didn’t have to be cheese, it could be anything, but Gene’s father would call it a cheese party. This should have been a clue. I should have known then that Gene thought I was going to die because he would never have said, “Wake me up in the middle of the night.” His performance convinced me. And it happened that I did wake Gene almost every night. I would wake up sweating and out of breath, running from a nightmare that didn’t end when I woke up. I would cry in deep moans, wailing like a wounded animal—getting louder and louder to try to drown out what had happened, what I looked like, what could be. Gene held me, rocked me, but he couldn’t protect me from the cancer. The night was the scariest time.

In the daytime, lying in bed, I was glad I was in California because there was still green outside the window in November. Sometimes I would just lie in bed, looking out and thinking what a beautiful scene it was, and how much I wanted to be alive. I listened to music. I watched television. I read. And one day, lo and behold, my little ninety-five-pound body started to get hungry. I hadn’t really eaten in over a month.

I started to want things from my childhood that I hadn’t thought of in years. I wanted French toast. Grace was so happy I was hungry that she made it right away. Suddenly food was all I could think about. I wanted oatmeal and brown sugar. I wanted pancakes with bacon and syrup. I wanted bagels with cream cheese. Somehow as my taste buds came back, they came back for foods of my childhood, things that were in the fridge and the cupboards when I was little—Cameo cookies, Muenster cheese, sour cream. Gene and Grace were always going to the supermarket—I kept coming up with new cravings. It got so Gene and Grace wouldn’t mention food around me. Hot dogs—I wanted hot dogs with mustard and relish and everything . . . doughnuts and crispy French fries . . . horrible foods, stuff that you would never eat because it would give you cancer. Everything I wanted was stuff that the American Cancer Society said, “Don’t eat this—it will give you cancer.” But now the doctors said it was more important that I eat and put on weight than anything. I ate whatever I wanted. It seemed like I couldn’t put on a pound. I was just skin and bones on my five-foot-six frame. My first night out, we went to Gene’s lawyer’s house for Thanksgiving dinner. There was a big crowd and I ate everyone under the table. The next day, they sent me a basket of food delicacies as a joke.

Joanna Bull came to the house once or twice a week and guided me through my relaxation and visualization exercises. My psychiatrist made house calls as well.

Three weeks went by and then it was time for chemo number two. I would have to go into the hospital for two nights. The drugs would be administered intravenously through my Port-A-Cath in the hospital. The Alchemist checked my blood work to determine the amount of the chemicals that he could give me. Cytoxan is given to increase the effectiveness of cisplatin, which is relatively new and a very toxic drug. It can make the patient violently ill so doctors have learned that it is helpful to calm the patient with sleeping medications and steroids to avoid violent reactions. Also, cisplatin can be hard on the kidneys and I had to be hydrated with liquids for eight hours before the actual chemo. The Alchemist wanted the chemo given early in the morning because of some study that shows the cancer cells to be more sluggish at that time. Usually chemotherapy is administered as an outpatient procedure, but cisplatin treatment requires hospitalization.

Gene, Sparkle and I checked into the hospital on a Monday evening at 6:00
P.M
., right back into the same burgundy and pink room that I’d left three weeks before. I was scared, but my hospital buddies were glad to see me and distracted me with hugs and gossip. I brought a small bag with a change of underwear, my cosmetics, my glasses and the pink umbrella with the shoes attached. The night nurse hooked me up to bottles of water and minerals that flushed through my system. Gene ate dinner in the room. The gynecologist, who had been at my surgery, came in and did a pelvic exam and answered my list of questions. He is a doctor who treats cancers of the female organs. Gene and doggie went home about 10:30
P.M
. I took a sleeping pill and the nurse attached a catheter so I wouldn’t have to get up to pee. I tried to do my relaxation exercises, but the catheter was so uncomfortable and I felt irritable. The air conditioner whirled in the vent above the bed and my eyes would not close.

At 6:00
A.M
. Tuesday morning, Jodi, my nurse, arrived all fresh and perky on her mission to save my life. She handed me three sleeping pills and antinausea medication. I remember I swallowed them, gave her a hug and then I hugged the night nurse goodbye. I don’t remember anything after that except getting the shot of steroids, feeling them hit me like hot, prickly lights going on in my whole body. Then I was sound asleep for the next twelve hours. Jodi dripped the chemo into my Port-A-Cath and kept a close watch on all my vital signs, making sure my kidneys were working and flushing the chemicals through my body. From time to time she flicked my legs around in the air to make sure I urinated. I found out all this later. I didn’t remember a thing until 6:00
P.M.
when Gene and Sparkle arrived.

Gene put Sparkle on my chest and she gave me a little kiss. Someone brought me some food. I have hardly any memory of those moments. I could barely keep my eyes open but I remember Gene’s face and one bite of food. The sleeping pills that I took alter short-term memory. Even if I’d gotten sick from the chemo, I wouldn’t remember.

Now, for a person like me who wants to be in control of her life, to give up a whole day and to take pills that made me forget was one of my hardest psychological struggles. I was losing a day on earth. When I came out of it I found people had died, stores had gotten robbed, movies had opened, there was weather—a whole lot had happened that I had missed. That really bothered me. A few minutes after six, I went back to sleep and I slept all the way through till the next morning, Wednesday morning. When I woke up, Jodi was there. I thought about this later—she had gone home and been with her husband and watched TV and read books, taken a bath, brushed her teeth and everything. She had had her life and I had just been asleep—like Sleeping Beauty or Rip van Winkle. I slept thirty-six hours from Monday night till Wednesday morning. All the world was going on and I was asleep. One day while I was sleeping Jackie Gleason died. I didn’t know until a month after it happened.

In order to avoid nausea, I was on heavy-duty steroids. I was so wired when I woke on Wednesday morning that I could’ve come to your house and washed your car, cleaned your yard and cooked dinner. My brain was flicking around, my eyes were darting around, my hands were shaking. I don’t know what to call it except wired, as though I’d had a million cups of coffee. It was like I didn’t even know who I was—I was somebody like me, some weird person who looked like me and dressed like me. My face was puffy from the steroids, as though somebody had just blown me up like a balloon. But I got up, I had some cereal, I got dressed, I brushed my teeth. I packed my stuff and Jodi took me home in the car. The whole rest of the day, everything was altered: I felt like one of those animated books where you just flip through the pages with your thumb—like the early moving pictures. That is what my life was like. My taste buds were weird. Things tasted weird. I watched a movie on television to make the day go by. I played Scrabble and I won, so something was working in my brain. Somehow that day went by, thanks to Grace, Jodi and Gene. They kept me busy.

By the time evening came around, I wasn’t nauseous, I was just tired. I was taking steroids at home. I was to go off them slowly, four Wednesday, three Thursday, two Friday, one Saturday. When I got in bed with Gene Wednesday night, I was glad to be home.