It's Always Something (24 page)

On May 10 Grace and Gene came with me down to the oncology office where I was to get my carboplatin chemo. It would take about four hours to drip the chemo into my veins. I knew there was cancer growing inside me and I had to do something about it, so I wanted the chemo. But I was haunted by the fact that there was only a ten- to fifteen-percent chance it would work.

Until this point, I had been so sure that cancer was behind me. I’d been through a year of treatment. I had beaten it. I’d been on the cover of
Life
magazine. I had become a symbol of conquering cancer. Right from the beginning, I believed that I would get well. I always saw myself surviving and going back into the world with all my Jesus symbolism, my badge of courage. But it was in these days in May that I suddenly realized I had a life-threatening cancer. Somehow my story of cancer began for real at this point. Through Joanna and The Wellness Community, I had become such an active participant that there was no escaping reality. Now reality was this horrendous nightmare. There was no rationalizing it away.

When my girlfriends would call up, they didn’t know what to do. They were just as petrified as I was. Here I’d spent a year telling everyone I would be all right, making everyone else confident and trying to dispel their fears of cancer. Now I was too scared to reassure anyone. When I was first diagnosed, Gene knew what a life-and-death struggle I was in, but I didn’t know. Now it was all laid out, no escaping. I was the one who talked to all the doctors. I was awake, I was conscious, and it was all bad news.

My life became crowded with ironies. Weeks before I had been invited into New York by Jane Curtin and Marilyn Suzanne Miller, a writer from the original “Saturday Night Live,” for a luncheon in my honor. Neither of them had seen me in seven or eight years and they wanted to celebrate the
Life
magazine article and just have lunch. The carboplatin side effects were minimal—no nausea at all—so ten days later I made the trip to New York for my luncheon. It was all the female staff from “Saturday Night Live” when I’d been there: my costume lady, Margaret, and her sister Elizabeth and my makeup woman, Bobbie, and all the script girls and the secretaries. Everyone was so glad to see me—hugging me and yelling at me because I was too thin and they wanted me to gain weight. They even accepted my dorky haircut. I felt like a fraud. They were all celebrating my recovery, and I was caught in a recurrence. I just couldn’t tell them. They took Polaroid pictures and in every one of them I looked like a ghost. Laraine Newman had a cake sent in even though she couldn’t be there. All this wonderful food, and I couldn’t eat any of it because it was all healthy salads that my radiated intestines couldn’t handle.

It was a very bittersweet event, and Jane looked so beautiful. I’d never seen her look more beautiful in all the years that I’d known her. Her personal life was so good—her husband manages her, her child is beautiful—a little replica of her, healthy and bright—and her work is good. I was proud of her—not envious, just proud of her, most of all because she was still Jane. But the luncheon left me feeling like I was a Martian, some outer-space creature who just happened to be there.

When I came home, I had a breakdown. Then Gene and I had a huge fight because I said that I wanted to go to Mexico and have laetrile treatments from apricot pits or something like that. Joanna had sent me a book called
Cancer Survivors
about alternative therapies outside of standard medical treatment. There are about ten treatments described in the book, and of course, after each one I read, I thought,
Well I’m going to do that!
So there was Gene, hoping we’d have a normal evening, eat dinner and watch a little TV. I turned to him and said, “Will you go to Mexico with me if I have this laetrile?” (I’d just read that chapter in
Cancer Survivors.)

He flipped out. He had just had it. He said, “No. Absolutely not!”

He said, “I’m not going. No peach pits!” He smashed his dinner plate on the floor. “I’m not going and have you do peach pits!”

I yelled, “Well, what if I’m dying and that was the last resort?”

He yelled back, “I don’t care if you’re dying, you’re not going to have peach pits!” He just got settled on that and because he was saying the wrong fruit—it was apricot pits—that was really driving me crazy. He was going on and on saying the wrong fruit.

“Peach pits, it’s crazy!”

I thought,
He’s abandoning me.
It was a huge fight. Judy called in the middle of it to see how I was, and I yelled at her. Then I said, “Would you like to go with me to Mexico to have laetrile?” and she said, “Sure.”

I turned to Gene and said, “Judy will go with me.”

He said, “Well, good, then go with her.”

The truth was, I was mad at everyone. When I had called Joanna to tell her about the recurrence, she had been just as sad as me. I hadn’t even been able to listen to her talking. I didn’t believe in anybody, I didn’t believe in anything. It all seemed like bullshit now, everything. I spoke to Harold Benjamin on the phone. He and all my friends at The Wellness Community were all devastated, they were just as devastated as me. I had become a spokeswoman for The Wellness Community, and a symbol of getting well. I had been a model cancer patient completely active in my own therapy. Now I felt like a living example that it didn’t work.

I’m just a fraud,
I thought. All these people had told me they had taken the
Life
magazine cover and hung it up in their bedrooms to help them get through their treatment, and now I was standing up there with my hands on my hips wearing my suspenders that didn’t do any good. I continued to have long talks with Joanna on the phone, but part of me was closed off. Things ran through my mind like the gynecological oncologist saying, “Your tumor must be very aggressive.” After all that treatment, it came back. The radiologist had told me that radiation was ninety-percent effective for getting rid of microscopic cancer—ninety-percent effective. Ha!

During the first four weeks after the recurrence, I spent a lot of time lying on the floor and staring at the ceiling. I would come down for breakfast and not be able to eat because I was so frightened. I’d end up just getting off the chair and lying on the floor in the kitchen staring at the ceiling. I didn’t know what else to do. It was so hard on the people around me. I’d wake up in the night screaming.

“I’m going to die, I’m going to die! I’m petrified, I’m going to die!”

Gene would say, “You’re not, you’re not.” He kept saying, “This will work, this treatment will work. You’ve done it before, you’ll do it again. I believe in you.”

He was continually coaching me, building me up. But when other people called on the phone, I grew to hate their calls. They only reminded me that nothing was happening. I felt they were calling only to find out whether I’d died. I decided they were calling only to make themselves feel better, not me. So I stopped taking phone calls. I didn’t want to talk to anyone.

When I went in for the second carboplatin treatment, my CA-125 had gone up from 90 to 135. The cancer was still growing. The Connecticut oncologist said that it would take three treatments to have any effect. But my CA-125 count was so shocking that I couldn’t even accept it. Even worse, the carboplatin began to affect my bone marrow. I became very tired and short of breath. I was out of breath when I climbed the stairs in my house. I was so tired that I didn’t even have the energy to walk in the yard. I wasn’t manufacturing enough blood to carry oxygen throughout my body. The Connecticut oncologist said I’d have to have a blood transfusion. Gene gave blood and so did my neighbor’s husband.

What I mourned most was my lost joy, my happiness, my exhilaration with life. I would say to Gene, “I want my joy back, I want my love of life. It’s robbed from me. I have to go through treatments, I have to think about this thing growing inside me.” I began to have pain around my liver. Then I thought of my life degenerating into pain, then eventually being on a morphine drip, and then dying. The image of my friend Linda dying repeated in my head. I would lie in bed and think I was her.

Then Harold Benjamin did something wonderful. He sent me his World War II bomber wings in an envelope. He had been in the Air Force in the war and these were his real flying wings. He wrote, “I’ve had these with me since 1944. You keep them for the next forty-four years. They have done the job for me—they will for you. Love, Harold.” They were beautiful and I knew they were something precious to him. In his wisdom, he was telling me, “Just remember you’re in a war.” When he was flying, he didn’t know whether he’d get hit or what would happen to him, but he flew with bravery. I was touched by what he did. I put the wings up near the phone on my desk where I could look at them all the time. They gave me a focus. Harold was reminding me, “You’re still in the war. You have to fight more but you can still win.”

Then I remembered what The Wellness Community was about. I remembered what Joanna and I had worked on for over a year. There are no guarantees. There are no promises, but there is
you,
and strength inside to fight for recovery. And always there is hope.

So on a day when I felt brave like a soldier, I called a man I’d met in Connecticut who had just been diagnosed with lung cancer. I had called him a few weeks earlier to give him a pep talk. Now, I poured my heart out to him and I said, “I’ve had a recurrence.”

He was so sympathetic, he said, “Gilda, why don’t we get together? Why don’t we talk? I know a couple of women going through breast cancer who maybe would like to get together, too.”

He and his wife had gone on a macrobiotic diet, a carefully balanced diet, more than half of which was composed of whole grains like brown rice. His wife suggested to me that I call this one girl in the area who had cancer but had been on a macrobiotic diet for years, and her cancer had stayed under control. So I called her, too, and I invited everyone to come to my house on a Wednesday night.

I said to Gene, “I’m going to have a Wellness Community meeting.”

It was the first time I’d felt happy since the recurrence. I fixed up the living room in a congenial seating arrangement. I had told everybody to come around seven o’clock and that we would meet for two hours. Twelve people showed up. My friend with lung cancer was the only man. I ran the evening just like a Wellness Community sharing group. I explained what The Wellness Community was and what goes on there. Then I said, “Why don’t we each go around and tell our story.” I said that we should keep what we spoke about in confidence among ourselves and that the purpose was to simply share our experiences with cancer. Like The Wellness Community, it was wonderful—each person told about themselves and where they were at that point and what they’d been through. There were three or four people there who were on macrobiotics and who were very active in the macrobiotic community in New York. They each had different types of cancer. Their experience with macrobiotics was interesting to learn about. I was able to spill my heart to these people, who understood in the deepest way. We decided that we would do this every week. I said, “My house will be open every week on Wednesday from seven to nine o’clock so we can come and talk about what we’re going through.” I said, “You don’t have to call to say whether you’re coming. I’ll be open.”

I felt a great deal of comfort in this group. I didn’t feel the need to be funny, but I was. One Wednesday, before the meeting, it was raining. I put on a raincoat and I went out walking on my street. A car went by and splashed this huge amount of mud on me. I was sopping wet, walking down the street. I started talking out loud to myself.

“That’s me, ‘Cancer Woman’! You can do anything to me. I can walk through storms. I can get splashed by cars. I can have millions of treatments. You can radiate me, you can give me poisons, but you can’t destroy me because I’m Cancer Woman!”

The next thing you know, I’m kind of running down the street with my arms spread out in this raincoat yelling in a Captain Midnight voice, “Cancer Woman, look at her go!”

I turned back and more cars went by and splashed me, and I said, “Ha, ha, ha, ha! It’s Cancer Woman!”

I came back to my own backyard and went running around. No one else was home. I was running around the backyard being Cancer Woman, making music for myself, “Da, da, da! Da, da, da! She can take it, she can have more cancer and more cancer and the cancer never goes away and the years go by!”

I went on and on. Of course, when I had an audience later I did the whole thing for them, the whole Cancer Woman routine. They laughed because I’m sure they had all felt that way at times.

Grace and Gene were especially relieved to see me happy for the first time in weeks. There was one lady at the meeting who had resigned herself to dying, and I just gave her a huge talking-to, which was the talking-to I needed myself. Of course, three days later I’d lie in bed pretending I was at my own funeral, that I was in a coffin. I would sink back into pits of despair. I was so unpredictable that Grace and Gene had to be like a bomb squad, never knowing what would set me off.

At that first meeting, I was fascinated by the people who talked about the macrobiotic diet. They seemed the least nervous and most in control of their lives. That interested me. I was still having bowel problems and difficulty eating, but I started to talk to them. They were so peaceful and they looked good, and I thought,
Gee, food has always been a problem with me, maybe food is the answer to getting well. Maybe that’s the variable that has been destructive in my life.
I remembered that the
Cancer Survivors
book talked about nutrition as an alternative therapy. One of the women said, “You know, I’ll be glad to cook some stuff for you to try.” She had a book in her purse. “Why don’t you read it? It’s about macrobiotics and how it’s helped a lot of cancer patients and it’s cured a lot of people.” She was persistent and wonderful.

The next morning she showed up with some foods for me to taste, some macrobiotic cooking. She was a beautiful woman who has lymphoma but has had it under control for quite a few years on a total macrobiotic diet without chemotherapy. She does a lot of cooking, has dinners at her house and is active at the Macrobiotic Center of New York. She just started dropping food off every day, things like rice cream, which is strained brown rice with the husks off. She knew certain cooked vegetables I could have and fish, and I think she talked to some of the counselors at the Macrobiotic Center about me. She told them about the bowel problem, and they told her what I could have and what to stay away from because it would be hard to digest. I started reading a lot, so instead of being frightened and worrying about cancer, I became obsessed with reading the macrobiotic books, going to the store and buying more books. I threw myself into it. It wasn’t peach pits, so Gene started listening to me talk about it, and he thought,
Well, this isn’t too bad. I’ll support this.