The Kahler Inn was threadbare but homey: a laundry for guests, an odd indoor swimming pool surrounded by a wooden fence with elliptical trainers nearby, a place near the swimming pool where guests could bring food to eat at round pool-area tables. After two days at Mayo, we had a routine. Get up, have breakfast, take the subway entrance to the clinic buildings.
Every day, after the doctors’ appointments or tests were completed, and after I had come back to the hotel and fallen onto the bed with appointment-going/waiting/talking-to-doctors fatigue, we went on an outing. Even though Mayo was the most sympathetic and organized of medical institutions, it was still a place where the energy required to negotiate the terrain was immense, like speaking French all day long. And where all you wanted to do was get out into “normalcy,” into the oblivious world, into something else. We feared being sucked into the whole world of Mayo, generous, courteous, and nice as it was. The Magic Mountain. Oz. We feared never leaving.
We drove to Mayowood, the family home of the Mayos, completed in 1911, where we joined a group of midwestern women and men dressed in bland knits and one mother and daughter, in sleek athletic suits, who were probably Mayo patients. The daughter’s body had a slight lack of symmetry (something was wrong), and her mother had a furrow between her eyes. It was a house with “no particular architecture,” as the Mayo Clinic says. Big veranda, lots of open rooms, spacious airy bedrooms upstairs. The house was built by Charles Mayo, who founded the Mayo Clinic with his brother, William Mayo, and other doctors. The Clinic grew out of a group medical practice their father, also William, established after he returned from the Civil War. William was a small man. His wife would ask soldiers returning from the front if they had seen a doctor, and if they replied that they had seen a short one, she knew he was still alive.
We visited a bank designed by the architect Louis Sullivan in Owatonna. (“Do you have a lotta money?” Vincent asked me as we drove across the flat prairie. “No, I owe-a-tonna.”)
We hiked along the Root River. We walked from our hotel to the lake in town.
Midweek we had a neurology appointment with Dr. Clarke Stevens, a gentle Canadian who walked in, washed his hands at a little sink, sat down, and then said, “Did I wash my hands?” I told him he had. He smiled. He too wore tweed.
Dr. Stevens was specific. He had read the MRI. The T-2 signals were much reduced. This meant, he said without condescension, that the nerve was better. Not completely back to “normal” but better. There was some “atrophy.” It’s smaller, he said, normal for a nerve that has been inflamed.
“What can we rule out?” I asked him.
“It’s probably not MS,” he said. “In MS usually the retinal vessels will go altogether. The white patches on the MRI were not distributed for MS.” Nevertheless he would send the results to the MS team at Mayo for a consult.
“An inflamed nerve,” he said, “is not usual with uveitis. It’s not lupus. It’s not Lymes.”
It was unlikely to be ischemic (Dr. Q’s “one-time event”) or related to circulation.
He told me I was always welcome to call him. Which to my astonishment, several months later, turned out to be true. He told me I was always welcome to come back to Mayo.
At our last visit with her, Dr. Leavitt said that 95 percent of the optic neuritis cases they saw at Mayo were MS.
“Ninety-five percent!” I said.
“Well,” she said, waving her hand in the air, “high nineties. Inflammation,” she said, “opens up the blood/brain barrier.”
Later I would read with some relief, “Prednisone seals it off.”
They would call it “optic neuritis.” Dr. Herman suggested a slow taper of 2.5 milligrams every three to four weeks down to 5 milligrams, then possibly an increase in the methotrexate. He suggested holding the taper of the prednisone at 5. “For some reason,” he mused, “patients flare at five.” I should have a visual field test every month.
I did not have Cogan’s syndrome (different type of inflammation; hearing loss would be profound) and had no evidence of toxins, temporal arteritis, or scleritis. The check for heavy metals (twenty-four-hour urine) was negative. The pelvic X-ray that checked for spondylarthritis was negative.
It was almost a year later.
In the end, even though they had not found the actual cause, I felt that Mayo had eliminated much of what could be eliminated. I felt comforted because I had been to Mayo, and they had told me I had optic neuritis, that I was on the right drug protocol. Vincent said, “I don’t think they care about the diagnosis. What they care about is things seem to be stable.”
Maybe we were out of the woods, I thought. Maybe we were on the home stretch.
Just after those final appointments, we were walking quickly through the great hall, skirting people, heading for the elevators, when my eye caught a man at the grand piano. Behind him was the wall of glass that framed the outdoor atrium. In the atrium people were reading or sitting with their faces turned upward toward the rapidly diminishing sun. The man was wearing green scrubs, as if he were either about to go into an operating room or had just left one. He had a small goatee. By sitting in scrubs at the piano, he had one foot in the medical world and the other, somehow, with us in Oz.
He had just started playing the Moonlight Sonata. I stopped. He played beautifully. His concentration was complete. The music filled the space. I saw that Vincent had caught the pianist’s eye and was nodding to him, a gratitude nod, and the man nodded solemnly back. Most of the people walking through the lobby just kept on going. We stood still. Then, in the atrium behind the pianist, I saw a small boy. He had the narrow shoulders and skinny legs that mark little boys, and he was running with his arms opened wide into the air. His head was bald.
The longer I resided in Oz, the more I understood how fragile life is. But in that moment, with the sonata floating in the air, the man in his scrubs working to play it well, and the boy, a piece of straw in the wind, I felt it altogether, completely.
Vincent turned, and we looked at each other, and what was transmitted between us was the shock and fear and grief and gratitude that had collected so far that year that could not be, or as yet had not been, put into words.
Chapter 15
AFTER WE HAD BEEN HOME from Mayo about a month, in late November, it was time for a follow-up CT scan for the spot in my lung. I did it without thinking. There had been so many negatives on tests, this would be just another. I was therefore unprepared for the phone call from Dr. Wright, who told me that the spot in my lung had “increased in size.” From 1.2 to 2 centimeters. I remembered the phrase in the medical literature regarding lung cancer: “larger than two centimeters.” Dr. Wright recommended a needle biopsy.
I asked Dr. Mesipam. “It’s not cancer,” he said, “but I don’t think a biopsy is a bad idea. We’ll find out what it is.”
Jodie put her life aside for that morning and took me to Pueblo Radiology. The doctor who sat us down to talk looked like a surfer, with wavy brown hair and firm shoulders. Jodie and I decided he was easy on the eyes. I got into the ubiquitous calico gown and lay down on the table in a sterile room. The entry point was in my upper left back. He would find the lesion or whatever it was with the use of a CT scan. He would numb the area going in, but there was a rib, he warned me, very near. He would use a smaller needle first and then a larger one, the one with the bore that would remove tissue. He began. He might, he said again, hit the rib. He did. The pain shot through me from my upper back straight down to my ankle. I screamed. He said, “That was the rib.” He used the smaller needle to inject more Xylocaine into the hole.
He spent quite a bit of time centering the CT scanner, then inserted the larger needle. It was quick.
In a recovery room the size of a closet, I thought all was well. Jodie sat on at the bottom of the little bed rubbing my feet. They X-rayed my chest—the lung was inflated. Jodie took me home.
In the morning I walked back to Pueblo Radiology to have my lung checked. It had col
lapsed. Air from the collapsed lung had collected in my chest. That air was now pressing on the lung, causing it to remain collapsed. A doctor named Wrench, a name I particularly found appropriate not because he wasn’t careful but because of what he had to do, told me they would have to put a tube through my chest wall. Lungs cannot be sutured; one must wait for the lung to heal on its own. “We never operate on a lung to close a puncture,” Dr. Wrench said. “Not even after a gunshot wound.”
“Putting a tube through my chest” does not convey the tiny operating room, the fact that I was unprepared, the lack of sedative, the nurse who held my hand. The tube allowed air to leak slowly out of the chest cavity so that the lung could expand.
Once that air escaped through the tube, the lung could expand and, Dr. Wrench hoped, remain that way. He showed me a valve on the tube; it would remain open, and if the lung expanded, he would close it and then wait four hours to see if it remained inflated. If it remained full, he would take the tube out.
After he was finished, I walked out the door. “Take the elevator,” one of the nurses called after me.
I walked down the street, the plastic tube hanging off my chest under my jacket. I looked like one of those women who had too much plastic surgery in the movie Brazil. The end of the tube wasn’t covered. I kept thinking that some kind of bacteria would get in.
I walked behind several medical buildings (The Eye Center, Physical Therapy Parking), along a sidewalk where there was a new wooden bench, passed a new parking “structure,” and then skirted a small broken-down garage in which someone had parked an ancient green VW. I always took this route to get to my appointments in order to see the garage and the VW, which, because they were not medical or new or impersonal, always cheered me up.
I felt more behind the glass wall than I had in many months. Farther into Oz. Over the last two days I had had a needle pushed through my back and into my lung, then an incision in my chest while I was awake, through which plastic had been pushed, leaving me with a piece of tubing resting on my chest.
When I got to our house and ran a glass of water, my hand shook. I felt deeply uncertain of who I was. With obliviousness, with the faith that my body would always be trustworthy, went part of my identity. I was alone in an empty house with a collapsed lung.
Much worse things had happened to others. I thought of the small bald boy at Mayo.
I thought of people who had been tortured. My mind knew the difference between someone deliberately inflicting pain and someone inflicting pain in order to help, but I wondered if my body knew it.
I remembered giving the novel to Dr. A and how I had thanked him for ten minutes of his time.
Giving the novel to Dr. A, I understood, had been my way of asking for recognition that I had a profession apart from that of patient. No, more than that. That I was a person.
Every day I walked over to Pueblo Radiology. Every day the lung had expanded, and they shut off the valve. And every day when I walked back at noon, the lung had collapsed again. The puncture wasn’t healing. A week later Dr. Burks would say that she thought it was the steroids. I was on 20 milligrams of prednisone. Her mentor, she said, had taught her that if someone was on 30 milligrams of prednisone, he would never do open lung surgery because the lung would not heal.
One day after the biopsy, the surfer doctor passed through the X-ray area where I was having my daily scan. He said, almost in passing, running his hands through his thick hair, “I don’t know. I certainly thought I got it.” I didn’t understand what he meant. I would understand later.
I opened an e-mail from Dr. Wright, and he told me that the pathology report had come back negative. I felt a wide expansion of feeling, a sudden expansion of air and light. I walked around my study with my arms folded around myself, holding my lung, my chest, my body.
“But,” Dr. Wright said, “we will have to follow this.”
Finally, on Monday at noon, eleven days after the biopsy, the lung remained expanded. I saw it in my mind’s eye as a miracle of tissue that took in and held air.
Just before I had the tube removed, I had an appointment with Dr. Wright. He showed me the pathology report. He drew a circle on a piece of paper.
“The lesion is here. We’ll follow up,” he said, “with a PET scan.”
“I don’t think I want to do a PET scan,” I said. “So much radiation.”
I did not understand, then, what he was saying. I was still involved with the tube. The tube was the thing on the front burner.
“What if the lung collapses again after they remove the tube?” I asked.
“It won’t,” he said.
“I think I should wait until tomorrow,” I said.
He looked at me carefully.
“I think you should walk over there and have it removed,” he said. “Every hour it remains in there, we increase the risk of infection.”
“All right,” I said.
Dr. Wrench was on call. He took me back to the small room where he had put the tube in. He told me he was not going to numb the area, that I really did not need it. I looked at him skeptically. I tried not to look at the coil of tubing on my chest. He kept up a patter about the weather, a helicopter pad the hospital was building.
“What is it that you do for a living?” he asked as he approached the table.
“I am a writer,” I said.
“Ah,” he said as pulled on plastic gloves. “I am now going to remove all the paraphernalia that goes with this, and then I’ll stop and we’ll talk about how to do the final removal.” He was uncoiling tubing, removing gauze.
“When I used to see a patient who had been admitted to the emergency room,” he said, “I would read an account of what the patient had said and done and what the doctor thought. Now what I get are the results of tests. I used to have a story, an understanding. Sometimes I can’t figure out what happened to the patient. I think medicine has lost the narrative.”
He said, “Now, we’re going to practice. You breathe in, and then breathe out, and when you breathe out, I’m going to remove the tube. But we’re going to practice first.”
“Got it,” I said.
I breathed in, and then I breathed out, and he made a motion toward the tubing but did not remove it.
“Okay?” he said.
“Okay,” I said.
“Now for the real deal,” he said. “Breathe in.”
I did.
“Now out,” he said. I did, and with a motion so quick I didn’t see it, he pulled the tube out. I felt exactly nothing. He covered the incision with gauze and taped it down.
“That was nothing,” I said, aware suddenly that I had tears running down my cheeks, from the anxiety, from his kindness and care, from the week.
He removed his glove, put out his hand, and covered mine.
“Good for you,” he said.
That night I watched a musical on TV. I felt light and buoyant. I called Jodie to tell her the tube was out, then mentioned that I had thought about leaving it in overnight, “in case,” I said, “the lung collapsed again.”
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 Moonlight Sonata at the Mayo Clinic Page 13