It's Always Something (25 page)

The more research I did, the more I found out I had to change. You had to have a gas stove to cook macrobiotics and we had an electric stove. So I had Grace have gas put in outside and I bought a new gas stove and put the electric stove in the garage. I decided to eat the macrobiotic way. Grace was filling shelves with foods she’d never seen in her life—whole grains, seaweeds and tofu. I met other people on macrobiotics and they were very encouraging. Nobody said to me, “Don’t have your chemo.” What they said was, “Do this too. Clean your body out. It’s going to take time.” Gene was happy because I was no longer a bomb about to explode. I was able to sleep better at night. I’d get up in the morning and make miso soup and study cookbooks. I had been in such desperate straits that this became the panacea. I could get up in the morning. I could live.

A week later I went into New York and I had a meeting with one of the very best macrobiotic counselors. You go in and fill out forms about your condition and pay quite a lump of money to see a counselor for an hour. He assesses you through looking at your face and feeling your hands. He uses diagnostic procedures based just on looking at and touching your body. Then he gives you food recommendations for what you’re going through. The counselor knew about my radiated bowel so he prescribed a food program that took that into account. He also knew I was going through chemo. After he examined me and read what I’d written about my case, he looked at me and said, “You have a chance to recover.” That was the best news I’d heard in forever. All I could see in the Connecticut oncologist’s face was that he didn’t believe I would recover. He seemed to have no hope for me, and I had no faith in him. But this macrobiotic counselor said I had a chance to recover and all I had to do was cook miso soup a certain way on my gas stove and eat rice cream five or six times a day and eat certain root vegetables and carp soup four days on and three days off—very specific, very balanced, which is important in the macrobiotics philosophy. The macrobiotic diet consists mostly of whole grains like brown rice, supplemented by certain vegetables and beans, but I couldn’t have the beans or the vegetables because of my intestines—too much fiber. The counselor told me to have patience.

I had dinner that night at the Macrobiotic Center and heard a lecture by a woman doctor who was very inspiring. I drove back with the woman who had been helping me. I began to see her as “the Angel of Life” because she had golden red curly hair, and when light shone through it she glowed. She was cooking for me. She was saying I could get well—if I ate this food, I could get well. “Think of the food as medicine,” she said.

I knew that more chemotherapies were coming up and I wasn’t going to be able to cook for myself. The Angel of Life had a family and wouldn’t always be able to make me food. So I called the Macrobiotic Center in New York and told them that I would like to hire someone to come and cook for me. They sent a young man, an Italian named Anthony. He came and lived with us and our new gas stove. Anthony was cooking just for me; all the others had to fend for themselves.

There was always the smell of fish in the kitchen and there were always bowls of mysterious beans and seeds and grains. Anthony was a very healing cook, a very bright man. He had owned a vegetarian restaurant in Europe and was about a year older than me. He was very much into macrobiotics, a very controlled, balanced person. He would do t’ai chi outside every day and swim and walk peacefully through the garden.

As only I can, I went bonko, completely nutty. I did everything macrobiotically. They said wear only cotton clothes, so I threw out all my clothes that were blends. No jewelry, they said, so I took off all my jewelry—my rings, my earrings, everything. No nail polish. I changed all my cosmetics to natural products, because they also recommended that. I had loofah sponges and body scrubbers and herbal soaps and seaweed toothpaste. I went to health-food stores and bought everything in the macrobiotic section. Anthony was my personal and private cook, but he also spoke to me all the time about healing. He would take me outside and have me walk in my stocking feet on the stones in the driveway to help my intestines. He would run me through t’ai chi. He would tell me that I was too nervous, that I spoke on the phone too much, so I decided I would never speak on the phone again. Grace and Gene were instructed just to tell people I didn’t speak on the phone. I wouldn’t even talk to Judy. She would call all the time but I wouldn’t speak to anyone—the phone was a drain on my energy. I decided I was not going to answer any more of my mail, either, that it was also draining me. I had my own fight to fight now. I continued having my Wednesday meetings, although people didn’t come so often—sometimes only one person would show up. There really was no one to run the group, no therapist or anybody with an overview. I was focused only on myself now that I’d become macrobiotic.

Anthony said it would be better for my intestines if I took my meals by myself and chewed them thoroughly. Everything was pureed for my intestines. He would make me certain kinds of fish and pureed vegetables. He was always cooking wonderful things and grinding them down to something I could digest. I always ate by myself. No one was allowed to come near me when I was eating. I’d get to chewing so much that I’d go into little reveries of chewing. I’d look at the trees and appreciate my life and be humble. That’s the attitude of macrobiotics, to be humble and to appreciate. Breakfast was almost always miso soup or rice cream, but before breakfast I’d be walking barefoot on the dew in the flowing cotton clothes. Anthony said, “Before breakfast you must walk in bare feet in the fresh dew on the grass.” Whatever Anthony said, I did.

Anthony would give me lectures during the day about the macrobiotic philosophy of life. He said that
macrobiotic
means “great life” or “long life.” He would say my trouble was that I would go all the way to the extreme of happiness, then I would go all the way to the extreme of despair. If I lived a life more balanced, more in the middle, emotionally, then I would be more likely to get well. He wanted me not to get so happy that I wouldn’t get so sad, to stay calm above everything else—to go to bed earlier and get up earlier. He thought I should plant a garden and be in balance with nature.

In the meantime, I was losing about a pound a day because there was no fat in my diet. When I went to see the Connecticut oncologist that first time I weighed about 116 pounds. During my macrobiotic stage, I went down to 93 pounds. I just got thinner every day. Gene was happy I was getting out of bed in the morning, working on my book and less fearful. But Grace didn’t know what to do—every time she opened the fridge, there’d be some weird-smelling thing in there. Grace has lived a lot of years and seen a lot of things but not one of these foods had she seen before. Ours used to be this happy house where we’d have tuna and coleslaw and lettuce and tomatoes every day for lunch and the house would be brimming with tastes and flavors. Now there were only bean curd and little packages of miso paste in the fridge. In fact, there was one thing that smelled so bad I couldn’t believe it—some kind of fermented soybeans. Anthony said, “Oh, you’ll develop a taste for it.” I never did.

The two carboplatin treatments had taken their toll on my energy. And I felt a noticeable increase in the numbness in my hands and feet. When I went to see the Connecticut oncologist, I had this conversation:

“I notice that I’m having more numbness in my hands and feet. I hope I don’t have to go to a neurologist again.”

He said, “Well, what would be the point?”

“What do you mean?”

“You have no choice.”

I said, “Oh.”

He said, “You have to have these treatments anyway, and I want to tell you you’re very brave to face what could happen.”

I wanted to strangle him. What kind of talk was that? Telling me I had no choice. I don’t know why he was so hostile to me.

The last straw came a week later when I went to his office to have a blood transfusion. The chemo nurse hooked me up so a pint of my donor’s blood would go through my Port-A-Cath. After about an hour she realized the blood wasn’t going through very quickly. She thought she’d better test my Port-A-Cath so she tried to wash it through with saline.

“Oh, this is clogged. Your Port-A-Cath is clogged.”

I said, “No, it can’t be.”

She said, “Well, sometimes the vein gets clogged up or something. Listen, we’ll give you an IV in your arm to get the blood.”

I said, “No, I don’t want to be stuck. It’s more painful.”

She said, “Well, we’ll just have to. Don’t worry, we’ll just stick you once.”

I agreed.

So I got a transfusion in my arm while she kept testing the Port-A-Cath. She injected a special solution to try to unclog any blood in it. Nothing happened. Then the Connecticut oncologist came in, and she said, “Her Port-A-Cath is clogged.” They started talking about me as though I wasn’t even in the room.

He said, “Well,
she’ll
have to have a new Port-A-Cath put in. Let’s put
her
in the hospital now and we’ll have them run a dye study to see if it’s clogged or not.”

Then the nurse said, “No, let’s give
her
the weekend.”

I’m sitting right there through all this while they’re deciding on my life.

“All right, we’ll give
her
the weekend.”

They finished giving me the blood and I came home. Gene was playing tennis; Anthony was watching soccer on TV. I was only home an hour when I started to run a fever from the stuff that had been put through the Port-A-Cath.

I said to Gene, “I will never go back there again. I will not see that doctor again. He is death to me. He looks at me and he sees me dying. He’s just doing what’s necessary until I die. I’m going to stay on my macrobiotics. I believe in it. I don’t want to deal with the medical community anymore. I don’t like the way they’re handling me. I don’t care if my Port-A-Cath works. I’m not having any more chemotherapy anyway. I’m finished. I don’t want to call him. You can help me out by calling him and telling him that I’m no longer his patient.”

Gene said, “Well, I’d like you to have an oncologist, Gilda. I understand what you’re saying, but I feel you should still be seeing someone.”

I said, “I don’t want to and I don’t need to. This is fine with me.”

Gene was wonderful. He called the Connecticut oncologist, and he said exactly what I had said: “Gilda says she no longer wishes to be your patient because she doesn’t feel you see her as recovering.”

They had their conversation and then Gene came back and reported to me.

I asked Gene, “Did he say he
did
see me as recovering?”

Gene said, “Well, no, but he did say ‘I understand’ and got off the phone.”

Then I was upset because I thought,
He
really
thinks I’m going to die!
Within ten minutes, the phone rang, and it was the Connecticut oncologist calling back. He said to Gene, “I want you to know that I do feel she can get well. I feel that she has to be patient, and there are a lot of treatments and different things we can do, but I feel she can get well.”

Gene said, “Well, thank you, but Gilda would prefer not to be with your practice.”

That was that. I was glad that he had at least had the sensitivity to call back.

I settled into my new life without oncologists. I had Anthony. He was my closest companion. He was the only one I made laugh. I didn’t talk to anybody else, and Gene went out to dinner at the neighbors’ house to be with people. I didn’t want my neighbors to come over because they asked too many questions about macrobiotics. They kept saying, “Well, if macrobiotics can cure cancer, how come we haven’t heard more about it? How come there isn’t more documentation?” My girlfriend Judy was going out of her mind in Toronto waiting for me to call her. She couldn’t believe I would disconnect from her totally. She decided she’d just come at the end of June for my birthday. So she made reservations for herself and her husband and her baby and my girlfriend Pam at a hotel twenty minutes from my house. She thought,
We’ll just go to the hotel and let Gilda know we’re twenty minutes away if she wants to see us. If she doesn’t want to see us, that’s okay.

Gene didn’t like the idea of my not being seen by a doctor. He proceeded to search for another oncologist. He said he had to do it for himself. He just wasn’t at peace with my decision. He still believed in the medical community. Gene’s sister had been through cancer, and her New York oncologist helped Gene track down someone I called the “All-New, Improved Connecticut Oncologist.” But I wasn’t interested.

Instead, I added another layer to the macrobiotics. The Angel of Life had given me another book called
You Can Fight for Your Life
by a psychologist named Lawrence LeShan. Joanna had talked about him at The Wellness Community as one of the forerunners of the theory of psychoneuroimmunology, using the mind to help the body heal or stay well. He had worked with hundreds of terminal cancer patients and he said that the ones who got well were the ones who were willing to change. He had had many successes with people who were psychologically willing to make great changes and would end up surviving what was considered a terminal illness. He lived in New York and I was lucky enough to get an appointment to see him. I saw him every week or ten days when he was in New York. We had deep and wonderful talks and he encouraged me to fight for my creativity and to love my own uniqueness. He was also interested in psychic healing, and I attended two healing sessions in upstate New York. Larry said that going to the sessions was like eating chicken soup—it might not help, but it couldn’t hurt.

Every day I got thinner and thinner, but I was tremendously calm. I wore the cleanest, fresh cotton clothes in which I was wasting away. I didn’t look too bad in my face and I still had my hair. Gene meanwhile was talking with this All-New, Improved Connecticut Oncologist he had found. I was in outer space—feeling pure, chewing my food, blessed by God, sure that I had cancer under control and that it was disappearing from my body. I was not aware that according to my last blood test, my CA-125 had risen to 245.