A Ticket to the Circus (55 page)

   
IT WAS OUR BIRTHDAY
, January 31, 2003. It would be Norman’s eightieth, my fifty-fourth, so we decided to go to New York and have a party to liven things up a little, but a couple of days before it was to take place, I had a checkup and discovered the cancer had returned. We canceled the party, and on my birthday I was once again getting surgery in Boston.

This time was harder. This time I knew there were no treatments that were going to make this go away. It would in all likelihood come back again, even though they would put me through one of the worst chemo regimes I think exists, intraperitoneal cisplatin, which involved dripping a strong chemo drug directly into my abdominal cavity through a port and then making me roll around on the bed so it could wash over my intestines. The nurse administering it had to wear thick rubber gloves in case a drop got on her skin, it was that toxic.

John drove me home after the surgery and the first treatment. I was climbing gingerly up the stairs to my bedroom when my mother announced that she was going to go back home to Arkansas. She was going to take the bus and I couldn’t stop her. It was all I could do to get to my room and into bed. Norman, I think, was happy to have me back, but he was not at his best when I was sick, and until I was able to come back downstairs and function, he pretty much left me to myself. Cancer had always been Norman’s metaphor for evil, and now here was his wife, suffused with it. Was it his fault? Had he given it to me? It weighed on him, tormented him, and caused him to stay away from me. He moved into the bedroom down the hall, which hurt me at first, but the luxury of having my own bathroom and my own TV compensated. John and Matt were my mainstays during that time, and then Christina Pabst, my friend from the Actors Studio (we had once done
A Streetcar Named Desire
together and forever would call each other Stella and Blanche), came from Wisconsin and cooked and looked after me for a couple of weeks. She played poker with Norman and talked to my mother while I stayed in my room and recovered. She was a godsend.

After a few months of the brutal chemo treatments, I wasn’t getting better. Then I stopped having bowel movements and had to be rushed to the hospital. In June, another surgery ensued. Before I went in, Arlan told the family there was a 99 percent chance that I wouldn’t survive it. He said afterward that when he cut in, it was so bad he almost just sewed me back up, but he felt like he had to try, and in the end, after an eight-hour surgery, when I woke up, there was a note on my pillow from John that said, “Mom, you’re the 1 percent!”

My intestines had become glued together by scar tissue from the radiation and the fiery cisplatin, and only by the grace of God and Arlan Fuller am I here. Arlan worked on me, cutting away the scar tissue and pieces of ruined intestine like he was untangling a fine gold chain, and it worked. I also woke up with a colostomy bag on my belly, which would come off in three months with another surgery to reattach the ends of the small intestine. Living with the bag was not the easiest thing I have ever done—for those of you who have had one, you know—but I knew it was only for a short time, so I tried to take it with a bit of humor. I told my friends I was going to design a “Bag Bag,” in all different colors and fabrics, so people could wear them outside their clothing instead of having to find ways to disguise them and stuff them inside. But I was getting scared. Everything I ate went almost immediately into the bag, and not much was being absorbed by my truncated intestines.

It was during this time that I lost a lot of weight, going from a high of 173 down to 103. Suddenly I was a different person. None of my clothes fit. I bought a few smaller-size clothes and they soon became baggy. I decided to wait and just wear what I had, belted. My skin became baggy, and I had wrinkles I had never had before on my arms and body, my face and neck. I watched myself age, day to day, as in time-lapse photography. I had no breasts or hips at all, and my legs were long sticks. Christina came back and stayed another couple of weeks, as did a friend named Elke Rosthal, and Aurora came and spent a week
with me, but they eventually had to go back to their lives. Norman tried to help by making his own breakfast and lunch, but he was not in good health himself. He was having chest pains, and of course he wouldn’t go to the doctor in Boston. He kept popping nitroglycerine tablets like they were candy, which upset me no end. My mother, who was at least out of the wheelchair and walking with a walker by this time, was more depressed than ever and just continually wanted to go home.

I got to the point where I couldn’t cope. The kids all had their lives. They came and helped as much as they could, especially John and Matt, but I couldn’t expect them to drop everything and come and take care of us, so we began to talk about getting an assistant in Provincetown. Judith was in New York. She was not about to move to the Cape, and Norman needed someone intelligent who could help him on-site. He had begun writing
The Castle in the Forest
, and there was a tremendous amount of research involved.

Norman and I thought of everyone we knew who might be a possibility as an assistant, and we remembered a waiter at one of the restaurants we went to a lot named Dwayne Raymond, who was an aspiring writer. We always liked having him as our waiter; there was something congenial about him. He was good-looking, personable, smart, and obviously overqualified as a waiter, but then, that is the case with most waiters in Provincetown, and New York, too. Probably most waiters everywhere.

We were trying to remember his last name and get his phone number when Norman decided to go to the grocery store to get a few things, and while he was picking over the bananas, there was Dwayne. They had a little chat, and Norman asked him if he had any interest in working as his assistant, which he did, and then somehow the conversation turned to me and how I had been having so much trouble with the surgeries and couldn’t shop and cook like I used to, and Dwayne offered that he was a good cook and could do both jobs. Our lives immediately got easier and more interesting, and I think he could say the same—at least the more interesting part. He was good at both cooking and researching, and gradually he took on more and more of the Mailer duties. He also became my friend and confidant.

Every morning when he came in, he would come upstairs to my
studio and we would talk about what was going on with me and Norman and my mother, and his relationship with Thomas, his partner, who also became a member of the household. Thomas was a carpenter, and we always needed someone to fix something in the house. To my delight, Dwayne got along with my mother and she became somewhat happier. She must have been bored out of her skull with only me for stimulation. She was terribly fond of both Dwayne and Thomas, who was also a good-looking man, with long shiny black hair, and she was enmeshed in their relationship, getting upset when they fought, happy when they were getting along. They both loved to confide in her (to a point), which pleased her.

I had been working on a novel, the sequel to
Windchill Summer
, off and on for years, that I called
Cheap Diamonds
, but circumstances had kept me from finishing it. Now I started it again. It was summer in Ptown, I was alive, and we had someone to help us. Things could have definitely been worse.

I was scheduled for another surgery to remove the bag in October, and Matt and John both came up to help. Then, the day before my surgery, Norman had severe chest pains, and Brian O’malley, our local doctor, told him to go without delay to Hyannis to the hospital. They did an angiogram, which turned out unspeakably bad because they couldn’t get the wound in his groin to stop bleeding. They put a twenty-pound weight on it for hours until Norman was in agony, and it damaged his sciatic nerve, which caused him real pain for quite some time afterward. Then they told him they were going to have to operate immediately. The doctor called the kind of blockage he had a “widow maker,” and he didn’t want to let it go even one more day. Of course we were all up in the trees, not knowing what to do. I had my bags packed out in the car to continue on to the hospital in Boston for my own surgery, and I wanted Norman to go to MGH as well and have the surgery with the best surgeons there were. Norman decided he wasn’t going to let the doctors in Hyannis operate right on the spot, so against their strong advice, John took him home, Matt took me on to Boston to get my surgery, and once again chaos reigned in the house.

My third surgery of the year was the worst of the three, but the bag was gone, thank the Lord. As far as the cancer went, Arlan had heard of a new experimental drug at Dana-Farber, and they got me into that
program. The drug worked, the tumors were kept in check for the next four years, and my life slowly got back on track.

Norman did go to Boston, found a good surgeon, and arranged to get the bypass. Unfortunately, they made him get all his teeth pulled beforehand as a precaution against infection. That was the beginning of his decline. An oral surgeon was going to pull the teeth and put in implants at the same time, a relatively new procedure. Stephen took him, and right from the beginning Norman was upset because every ten minutes, each time a bit of work was done, the doctor photographed it using a flash camera. Norman hated flash cameras because he had macular degeneration and the flash was painful to his eyes. He asked the doctor why he was taking so many pictures, and the answer was that he was making a record of it for his students, that it was such a new procedure they didn’t have any photos. Norman was enraged. He felt betrayed, and I don’t blame him. He may have signed a permission slip, but when you are in a situation like that and the doctor or dentist hands you a paper, you normally just sign it without reading the fine print because it’s either sign or go home. The doctor agreed to take fewer pictures, and on they went, for hours, through the hideously painful procedure. They were never able to completely deaden his gums. Then, afterward, the implants got infected and had to be removed. He was left with false teeth that he never got used to. They never fit right, and it was so difficult to eat that he began to lose weight.

The family once again rallied around in the early hours of the morning. This time it was Norman on the gurney and me sitting in the waiting room with them, and again it was a long, brutal surgery. The doctors brought him to the recovery room, then had to rush him back to the OR because he began to bleed through a stitch. He was opened up again, problem fixed, and finally, some hours later, we were able to see him. We were all wrung out, especially me. He was just coming out of anesthesia, and was in one of his crazy-head moods.

“While I was out,” he told all twenty-something of us ganged around his bed, “I discovered the plan for the family. We will buy a ranch someplace out west, someplace where land is cheap, and build the Mailer compound. Every family will have their own house. We have enough talent in the family to do anything we want to. We’ll make movies, we’ll paint, we’ll put on plays, we’ll write, it will be
great. We’ll all live together and have dinner together every night, and the beauty of it all is that it will be totally financed by the GFY card.” The what? “The GFY card. It will make us millions of dollars. We’ll copyright the letters, and print up cards. Can you imagine? It’ll sell like hotcakes. If you are in an elevator and someone shoves you, all you have to do is reach into your pocket and hand them a GFY card. You can give them out to anybody, anywhere, rude people in restaurants, people who have barking dogs, book reviewers and reporters.” What is GFY? “Go Fuck Yourself! Isn’t it a brilliant idea?” We all looked at one another, trying to keep from howling. He was dead serious. He had clearly had an epiphany while he was out, and this was going to be the family’s fortune. It was almost as good as the elevator that went to Miami.

John’s girlfriend at the time, Gena, made up some cards with a beautiful sunset behind a ship in full sail and the letters GFY in white. She brought a box of them to the hospital, and Norman never had so much fun. He gave them to the nurses, to the doctors, to the cleaning ladies, to everyone he could give one to. People loved it and thought he was the most charming man who ever lived. However, he decided sadly, it was probably not going to work. Copyrighting the letters might be impossible, and it was too easy for someone to rip off the idea, but he got a million dollars’ worth of fun out of them.

   
WITH THE NEW
experimental drug, I slowly got better. I got interested in clothes again and spent a lot of time ordering things online in my new size, 2. I tried to take my mother out shopping and for lunch, or for rides, or find anything at all that would interest her, but she preferred to stay in her chair and read. It was getting harder and harder to live with. Norman had completely given up trying to talk to her. After he recovered from his surgery, he spent most of his time up in his studio, working, or in front of the TV.

Finally, it was Mother’s Day 2004. John and Matt were there, and Danielle and her husband, Peter, had come up for a few days. I decided to make one giant effort to cheer Mother up. I bought her a new outfit, the boys got her gifts, we all took her out for lunch at a nice restaurant, and I arranged for a pedicurist to come to the house and give us girls all
pedicures. She dutifully got through the day, and at the end of it, we were sitting in the living room and she started to cry and said, “I hate it here. I want to go home.” Something in me just snapped. I had been through too much, done too much for her when I was too sick to do it. I’d learned my patience quota, and I couldn’t learn one more lesson. I had my reading glasses in my hand, and I snapped them in two. “Okay,” I said. “You can go back. I’ll send you down there, and I don’t care how you make it. You are on your own.”

Then I went upstairs and started making calls, trying to find someone who would live with her in Atkins, someone who would take care of her. There was no one. I called Susan and said, “I’ll give you a thousand dollars if you’ll come and take her home and find someone to stay with her. She’s going to kill me.” Susan, who was usually so understanding said, “You better pull yourself together. I’m not going to take care of your mother. Nobody is going to take care of her. What if she falls and breaks something, like the last time? Who is going to be responsible? You can’t hire somebody to be you. You’re going to have to figure out something else.” And that was that. It was hard to hear, but she was right.