The Moonlight Sonata at the Mayo Clinic (18 page)

She said, alarmed, “Do you think you might be imagining the worst out of defensiveness or just because—”

“I don’t imagine the worst—” I began then thought better of it. I imagined the worst out of the realization that the worst, or some version of it, happens. The nerve is inflamed. The lung collapses. The doctors don’t know what the “narrative” is. By that time, I knew that doctors routinely bullshitted about what lay at the other side of “surgery,” “tests,” “procedures,” “discomfort.”

It was not in my nature to imagine the worst. My nature, I now realized, was to imagine the best-case scenario and to be stoic, like my mother and her Scottish forebears. I had watched her march right through a needle biopsy of her jaw without so much as a flinch. But I had learned in this last year that imagining the best case is naïve. The best-case scenario is a way for the medical world to deal with the human suffering caused by medical intervention, so that those who cause or watch the suffering—the doctors, the nurses—can escape feelings of inadequacy and guilt. To be stoic is to suffer in silence so you can be a popular patient, which will get you nowhere.

The thin veil of invulnerability that covers most of us without knowing it had been torn. I knew that things happen. The lesion grows; the lung collapses. If I had run across the street to save the dog two seconds later …

Jodie and I went on to other things. I hung up. I realized I was upset. I started to cry. I called her back.

“Oh God, I am sorry,” she said. She was crying, too. “But I want to say, I have to say, what are you doing to get your mind into another place besides worrying?”

I wasn’t doing very much, I had to admit. Not very much at all.

At night I made lists of what to say to the doctors and what they had said to me. I heard again what they had said. “The nerve is very white.” “I have never seen a nerve so white in which the patient wasn’t blind.”

After Jodie and I hung up, I thought again,
What is prayer? What is it for
? The various “prayers” I kept up in the middle of the night did not vanquish the constant worry. How could I find a place that was not “imagining the worst”? Or a place that was different from this, as my friend had said, “living nightmare”?

Three days later, thanks to Jodie’s concern, I dragged myself to the altar area at Trinity at seven in the morning and sat down in the dark with four other people and a candle. Mark Benson at Trinity had started this “sit,” this “centering prayer.” It was basically a meditation, in silence, begun and ended when Mark rolled a wooden paddle along the edge of a brass bowl and it rang out into the silence. I sat for thirty minutes. Mark Asman was sitting a few chairs down. An Episcopal monk I knew was across from me. A woman who had lupus. Her husband. I just about went out of my mind. I worried, I fretted. I thought about my bills, my to-do list, the cat box uncleaned at home. My symptoms, the doctor’s appointments, my mounting bills. Then I went over all of it again. Then Mark rubbed the side of the bowl for a second time, and the sound came out in waves, like ripples in a pool of water. The session was over.

The next week I went back.

In early January 2011 I finally got the pathology report, having asked for it in December, having not received it, and having had to ask for it again. I read it. I read it again. Then I called the pathologist.

“Is this saying what I think it’s saying?” I said. “That the
doctor at Pueblo Radiology missed the lesion in my lung?” I remembered the surfer doctor who had done the biopsy saying, “I thought I got it.”

“That about says it,” the pathologist said. “Yes, that says it.” A pause. “Happens often,” he continued. “Small, you know. Hard to get.”

I sat back in my chair. The words
all for naught
walked through my brain. Then I called Dr. Wright.

“I did not understand,” I said, “what you were trying to tell me. But now I think I do. The pathologist has told me. He missed the lesion.”

“Yes,” Dr. Wright said.

“And that’s why you want to follow up with a PET scan.”

“Yes,” he said.

“Okay,” I said.

Right before I did the PET scan, I consulted Dr. Mesipam.

“Don’t do it,” he said. “Don’t have a PET scan. It will back us into a corner.” I listened to him, but I had already scheduled it. I did not want to unschedule. I did not want to explain why to Dr. Wright. I wanted to do what I said I would do.

Between the time of knowing that they had missed the lesion, and the PET scan, Vincent and I went up to a valley in northern Washington to stay with my first cousin, Nan, and her husband, Craig, in their cabin in the snow. We flew on an airplane. I carried a suitcase. I did what I used to do without too much thought: I joined my beloved family in the mountains. I had not seen them since the whole thing began. When I saw Nan standing outside her door, I climbed out of the car and stood beside it, my hands reaching toward her. She stretched out her hands toward me.

We skied together on long groomed tracks. We watched the ice float on the river. I felt my lungs breathe in and breathe out.

One night Craig called me to the front porch.

“Look,” he said, “Orion.”

“Now,” he said, “come to the back porch.”

I followed him.

“Look,” he said, “the Big Dipper.”

I did the PET scan at seven forty-five in the morning at the same cancer center where I had once taken my mother. The same calico curtains on the windows, the same soft voice of the same receptionist. A woman sat in the room with me. We were both silent. An elderly man came in with a golden retriever. The dog wagged its way across the room. We both put our hands down. The man sat down next to the woman, introduced himself as a volunteer, and asked her why she was there. She told him she was waiting for her son to have his scan. He had, she said, testicular cancer.

Then he came over to me. He was like Mr. Dick in
David Copperfield
, someone vaguely loony, harmless, and kind, exactly the right attributes for a person to help here in the doomsday room.

I told him in the bravest voice I could find, “I am having a scan because they found a lesion in my lung.”

After he left, to set up a table outside, the woman and I talked to each other—his goal, I realized had been to break our particular ice. A nurse came out to get me. The woman wished me luck.

The nurse led me back to a small room with a large lounge chair. Her manner was abrupt. She said she would return. In her hands, when she came back, was a can, somewhat larger than a soup can, but made of tungsten.
Her hands were covered with heavy gloves. They would “administer” this. The hooked me up to an IV and the can. I would wait for half an hour. Then they would do the scan.

After it was done, I went home and felt sick all over. I lay down and tried to keep my mind from worrying. The next day, as I was driving home, I saw that I had a message on my cell phone. I pulled over. It was Dr. Wright. “The PET scan is abnormal,” he said. “We need to talk. Make an appointment with my office tomorrow morning. I want you to bring your husband with you.”

I had a brief image of surgery, chemotherapy, a bald head, but all of it fell apart. I thought:
I am not up for this
.

The next morning, having turned our lives upside down to get there, we sat across the table from Dr. Wright. He pulled up the scan on his computer. He showed us the glowing point on the upper left lung. He said, “It’s hot. Not hot hot but hot. I am obligated to tell you that the radiologist thinks it’s cancer. I do not.”

“Why?” I said.

“Forty years of practice,” he replied.

Then he said to Vincent, “If she were my wife, I’d take it out.”

W
E WALKED TOGETHER OUT
of Dr. Wright’s office. We had told him we wanted twenty-four hours to think about it. We drove to work. A wedge biopsy would mean open lung surgery. It would mean risking an incision that did not heal. I was still on steroids. I was on methotrexate, which reduces one’s ability to fight bacterial infections. A friend, without a compromised immune system, had an infection from back surgery in the same hospital go to his heart. I had an image of staying in that hospital for weeks while the chances of infection went up. Was I imagining the worst out of defensiveness?

I called Dr. Mesipam. When I walked in, I said to him, “Now I know why you didn’t want me to have a PET scan.” He nodded, sober.

He said, “A patient of mine, a woman your age, was found to have a lit area in her lung on a PET. They did a lobectomy, went through it thin section by section, and found nothing. Then another, an eighty-seven-year-old woman, smoked like a chimney, lost twenty pounds in two months. PET found a mass in her lung. I called her son and told him to take her home, make her comfortable, no surgery, she would never make it off the table. But she said no—she wanted to know what it was. So they stuck a
needle in it and found exactly nothing. She lived another ten years, smoking all the time.”

He paused. “So I don’t trust PETs. They light up when they’re not anything, but everyone reacts to them, of course, and it backs you into a corner.

“No one,” he added, “in his right mind is going to let you walk away from this scan.”

“What would you do,” I asked, “if you were me?”

“I would wait,” he replied. “Two months. It’s still below two centimeters. Have a CT scan then.”

I walked out relieved and terrified.

The next afternoon Ann Jaqua and I walked over to the place in the park where they had restored the creek. We picked our way across the new plants, trying not to step on them. I could hear the water falling into the biggest pool. We passed a man sitting in a lawn chair, reading. Tiny birds hopped about in the sycamore tree. We sat down on two large rocks, placed so they overhung the pool. This little place was a scrap of nothing. It had no large views, no magnificent settings. It was not famous. I glanced at the man reading. He seemed relaxed, at home.

Ann looked at me anxiously. The night before I had had two dreams. In one a Hispanic man was driving down the road with me, and there was a branch blocking it. He said, “We should get this out of there.”

In the second, a hippie medicine man said, “I would leave it alone.”

“Well,” Ann said, “at least your unconscious is working on it.”

Just before the PET scan, I had felt as if I were reclaiming parts of my living self and parts of the living world. Skiing in the mountains, going to meetings at work, even
having dinner with friends, I sometimes forgot my fear of losing my sight. The visual field test before I left for the mountains had been stable. Perhaps we could begin tapering the prednisone again. But when Dr. Wright said, “The PET scan isn’t normal,” I fell back into Oz. The other world—full of forward motion, plans made by the living, with certainty that this would last forever—was gone. The wall came back, heavy and thick. And with it, a new, peculiar silence.

I got out of bed. I went to work. I walked with Ann. I made love to Vincent. In short, I went on living. This was not because I was especially brave or a “trouper,” another word I had erased from my vocabulary. I went on living because living is a habit. In
War and Peace
, a young Russian facing a French firing squad reaches back to loosen his blindfold, minutes before it will not make a whit of difference whether it is tight or loose or falling off.

It was a pretense of living. Only part of me was there. The rest was in that other world that we pretend does not exist: the world inhabited by people who know not only that the body will give out but exactly how it will. I understood this was the essence of Oz.

Ann and I sat there, beside the running creek, and I slowly realized that the creek, now restored to close to its original self, felt more alive.

I once spent quite a lot of time interviewing an architect, Christopher Alexander, author of
A Pattern Language
. I watched him and his crew build a house. Alexander was a tall Englishman with a barrel chest; he wore a corset under his plain oxford shirts to keep a bad back in place. His background
was in chemistry and mathematics. The first day I spent with him, he was drawing leopards on a piece of plywood for tiles he planned to make for a young couple in Albany, California, near Berkeley, where Alexander taught at the university.

“You know gargoyles?” Alexander asked me. “The heads, the beasts, and the saints that stick out from walls? I think they represent things from the Bible. In any case, they are certainly not polite. In many cases, they are placed where no one can see them. On a vault’s upper side, for example, or on a piece of wall invisible to someone unless they’re standing two hundred feet off the ground, or in the valley between a roof and a wall so you couldn’t find them unless you’re mending the roof. I think the mason who made such a gargoyle made it as part of his consecration of his stonework, and it was irrelevant whether it was seen.” Alexander, an atheist, said, “I have a feeling he meant it to be seen only by God.”

The leopards he was drawing would decorate a floor of a long room that looked out into a garden. They would be made of some sort of clay, Alexander thought. Each one would be shorter than the hand of a medium-size person. Because the room was 250 feet square, the leopards might be lost in it, but Alexander didn’t think so. Like the gargoyles in the eaves, he thought the leopards might not be seen, but they would be felt.

On the walls of his own living room in the Berkeley hills, Alexander had hung a number of ancient rugs. Some of them were only fragments. The really old ones were made in mosques or under the direction of Sufis. These rugs, Alexander said, taught him about geometry and order.

They had, he said, “a degree of oneness … an inadequate
word for something we might call grace or coherence or wholeness.”

He was working on an idea that was elusive, difficult, what Huston Smith called “things that cannot be pinned down.”

“Since this is a sort of objectionable theory and not liked in contemporary thought, in order to understand it, I had to get very, very empirical,” Alexander said. “And somehow demonstrate this, what I claimed to be an objective set of difference of wholeness, would be detected and formed by different observers independent of personal idiosyncrasies and independent of culture. In doing these things, I found the idea that was most useful—well, two things actually, very similar. One of them is that relative amounts of wholeness in a given situation out there, you can access by whether you experience a certain level of wholeness in yourself. Let’s say you are talking about great works of art. When you see a thing, a very great work, a sublimely calm thing, you gaze at it, access it. And you say, ‘Well, what’s the difference between that thing and another thing which is lesser?’ The difference is that somehow you say, ‘Well, which is a better picture of myself? Of all of me, everything about me, all that I am.’ It’s an odd question, but the thing that is more whole will be precisely that one about which you say, ‘That’s a better picture of myself.’ When you make a thing, if you are successful, it begins to have attributes that make a picture of the self: myself, yourself, you recognize yourself in it.…