We flew into Minneapolis and were driven down the next day in a shuttle in a sweeping snowstorm that rose and fell with the hills between the two cities. We did not want to rent a car this time, figuring in March in Rochester we might not want to go on excursions. We had to save money.
March at Mayo was quite different from October. The two ladies on the scooters and the woman with the cat were nowhere to be seen. In fact, there was almost no one on the street. The streets, as I watched them through the window of the Kahler Inn, looked like frozen iron. Vincent jauntily went out for a walk after we arrived and came back in a matter of minutes, his face red. He put his hands under the blanket on the bed. “Cold,” he said.
Staying in the hotel on our floor was a girls’ basketball team, and so in the elevators, whenever we went up or down, there was usually some tall girl in sweats, her hair lank and loose and her body in a feverish excitement. Every time I saw one of them, she cheered me up.
The next day, Wednesday, our first appointment was with Dr. Stevens. The receptionist, in Mayo style, told me that he was in the lab, but she would text him to tell him we were early and ask him to come over. I sat in his waiting area, watching a young woman manage to walk from her wheelchair to the reception desk with a smile of triumph on her face.
A nurse led us to an examining room. Dr. Stevens arrived in his customary tweed, blue this time. His brow was furrowed. He washed his hands at the sink and shook hands with both of us. He told me that I would get the schedule at his front desk and then return to see him when I was finished. When I told him that I had tested positive for antiretinal antibodies, he picked up the phone and said, “A lot of that research was done here, so I think I’ll call the retinal people.” He waited. He pressed down a button and dialed another number. “Hum,” he said. “I wonder where they are?” He tried another extension. “All in a meeting?” And then another. He hung up and said, “I wonder if they’ve gone to the moon.
“Talk to Dr. Leavitt about this,” he said, “and if she isn’t able to help, talk to me again before you leave.” He wished us well, his brow still creased, and I couldn’t tell whether the lab was preoccupying him or he was worried about me.
We picked up the schedule at his front desk. The next day, Thursday, I was to have a chest X-ray, a “pulmonary function test,” and a blood test.
On Friday I was to report to St. Mary’s Hospital for the needle biopsy.
We moved from the Kahler Inn that afternoon to the Kahler Grand, just around the corner. Despite the basketball players, the old Kahler had felt more depressing than in the fall. We needed a change of scene, Vincent said. Our new hotel was pretty spiffy by comparison, not much more expensive, and it had a swimming pool on the top, under a big glass dome, where I could swim, then lie beside it in steamy warm air, looking out on the cold sky.
In a cozy restaurant downstairs with a Dickensian name, Vincent ordered a glass of scotch, and I declined a drink. The waitress gently said, “The bartender has figured out a nonalcoholic drink, a sort of juice thing I call a prom fling.” She hesitated. “For those people on meds.”
“I’m on meds,” I said, “and I’ll take one.”
On Thursday, during my breathing test, the nurse asked me who I was seeing in pulmonary. Looking at my sheet, I said, “Mr. Holland,” registering for the first time that he was a Mister, not a Doctor.
“He is very good,” she said. “Excellent.”
I Googled Mr. Holland when I returned to the hotel and found that he was a physician’s assistant. I felt cheated.
At some point in the early afternoon, I either became anxious about the needle biopsy or I had a moment of clarity. I called the pulmonary desk and asked them if they could check with the doctors—would a bronchoscopy work as well? They said they would call me back. When they did, they told me, “The needle biopsy is canceled for now. Cart before the horse. They have rescheduled a CT scan for the morning. You can pick up the new schedule at the pulmonary desk.”
I was surprised and relieved and also disappointed. I had been gathering my energy for the biopsy, and now, I told myself, it was just going to happen later, and I’d have to gather up my courage again. But for now, it made more sense to talk to pulmonary before the biopsy.
After I picked up my new schedule, I was walking past the Center for the Spirit on my way to the subway to the hotel when I turned around and went back. The etched-glass door slid open. The prayer wall had many pieces of the cream paper on it, slipped in here and there. I stood in front of them and tried to think of writing a prayer for others, but all that came out was “Help me.” I pushed it into a slot, then wondered who cleaned the prayers out and whether the person read them. The prayer cleaner. I hoped that person had been one of us, a resident of Oz. I wanted the someone who removed my prayer from its place on the wall to be a person who knew what it was like to be afraid of leaving this world. To know the meaning of the word befallen. I wanted the prayer cleaner to have had a spot on his or her lung. To have sat across from a doctor who said, “If she were my wife, I’d take it out.” To have heard a radiologist intoning on a tape, “The area appears to be malignant.” To have heard a doctor say, “Our radiologist is alarmed.” I wondered if Jesus had not only crossed over into the land of suffering, when he took the blind beggar by the hand, but had stayed there. Maybe Jesus was a prayer cleaner.
That night after dinner, on our way back to the hotel, we walked past a small city park. Hundreds of crows were gathered in the trees. They covered every tree, muttering to each other, and occasionally one or two would fly from one tree to another. They must have been trying to keep warm by some combination of gathering and flight. Neither one of us had ever seen so many crows in one place, and we stood watching them even though we were cold. The fear that had been sitting farther out on the fringes of my mind (in a warm restaurant with a friendly waitress) moved into the center. I was just a small thing in a bleak landscape of cold and gray. I stood there while the birds fluttered and cawed, and a few of them moved from tree to tree, and through my coat, the cold seeped in.
In the morning, I took the subway into the main clinic building, then into the lobby of another building that had a strange funeral fountain in it and a pool that people had turned into a wishing well, with coins on the bottom. A vase with flowers only made it worse.
I took the elevator to the second floor where, hanging on the wall, was the beautiful rug with horses dancing across it. The patients waiting were watching the tsunami in Japan on TV, waves flooding into houses, over and over again.
The nurse asked me if I was wearing any metal, and when I assured her I was not, she believed me. I did not have to change into the awful nightie. When I walked into the room with the scan, the technician looked doubtful.
“Any—” he began.
The nurse held up her hand. “She’s home free.”
“Great,” he said. “We’ll have you out of here in no time.”
It took three minutes.
Vincent was surprised to see me back at the hotel. “Did you do the CT scan?”
“Yes, I think I did,” I said.
Our appointment with Mr. Holland was at one o’clock, so we had an early lunch in the hotel, which was directly across the street, and then walked over. I carried my bag with tests, scans, and reports that went with me everywhere like the packs on a horse. And my small black notebook with the lists of questions. In this case, I really had only one.
In the clinic lobby, a man with a long beard and an angry red face crossed and almost stumbled with what looked like a new prosthesis. Two men were sitting at the piano, one playing and the other wearing that open expression that meant he was about to sing. They were both in their late sixties, I guessed, and as I watched them, I saw a family resemblance. They might be brothers. As we passed them on the way to the elevators, I happened to look down and saw that the man playing had only one leg.
I girded myself as we rose in the elevator. A young man dressed in black lea
ther, with light, floating tattoos of birds on his arms, got in on the second floor and moved to the back. I heard a mechanical, fuzzy voice say, “I think it’s floor ten.” I turned, and the young man was holding a microphone to his throat to speak.
We sat in the large waiting area for pulmonary, a place I had never been. It was not far from the windows that had the same view as my swimming pool. The sky was the color of steel. It was twenty-two degrees at one o’clock. In California, March meant spring. A jigsaw puzzle sitting on a low table lacked one piece.
I was jumpy. I could not sit still. Vincent sat patiently and methodically working. I was irritated at him: he could work, and I could not.
A nurse called us, from double doors that opened automatically, and led us down a hall where, she said, Mr. Holland would soon join us. An old loden coat hung from a hook on the inside of the door. I felt as if I were entering a cage, a dark cell.
A man in his forties walked in, dark short hair, and a brisk manner. We had a moment of awkwardness where we both stuck our hands out at the same time, and he tried to shake my hand first, missed, and shook Vincent’s hand, and then we all sat down. I felt my heart in my throat.
“One thing,” he said, looking right at me. “I have looked at all your scans, including the one done this morning, and I am ninety percent sure you do not have cancer.”
It was almost imperceptible, the way the living world came back. The room felt suddenly ordinary: a couch, chairs, the high examining table. The silence that had walked beside me since I pulled over to hear Dr. Wright’s message was replaced by a soft background hum.
“May I hug you?” I said, and Mr. Holland looked down at his shoes and said yes.
“I am going to lead you through the scans,” he said, “but first tell me your story.” I started with the blur at the edge of my eye and began to walk through the months: the arterial biopsy, the lumbar puncture, the CT scan in February, the CT scan in May, the CT scan in November. The needle biopsy. The collapsed lung. Mr. Holland interrupted me often. He was clearly waiting, like a cat with a bird in its mouth.
Finally he said, “Anyone mention sarcoidosis to you?”
A word. Sarcoidosis. I told him that Dr. Wright had mentioned it early on, as a possibility, and the rheumatoid specialist at UCLA had wondered about it, but nothing had come of it. I told him I had read about neuro-sarcoidosis, on the Mayo Web site, and had mentioned it to a fellow in ophthalmology, who had dismissed it. I realized, as I talked to him, that it had been floating in the air, without traction, for at least a year.
I said, “My mother had it.”
“Really!” he said. “When was she diagnosed? Where was it found? How did it manifest?”
“I was a teenager. My mother had a spot on her lung. They thought it was cancer. My father took her to Houston.” I remembered them packing.
“Ah,” he said. “Let me show you the scans.”
He centered himself in front of the screen at his desk and walked us through each one.
“Slices of the body,” he said, and brought up a grainy image of something that looked like a creature from Alien, with sockets for eyes and a dome with cavities in it. I made out a band of ribs around two spaces with pieces of things in them, like wisps of string and one weird spiral-shaped thing. Upper left. My eyes fixed on it.
“We’re looking down from the head to the toes, in one-millimeter slices,” Mr. Holland said, typing at the keyboard. “This is the left side. Here’s the spot in February. And now in May.” He turned toward me. “Same size, right?”
“Right,” I said.
“And now in November,” he said, bringing up the image. The spiral was now a largish blob.
I shrank from it.
“It’s grown,” he said.
“Yikes,” I said, trying to sound nonchalant.
“Yep,” he said, “but not to get concerned, because here we have today’s scan.”
On the screen was the same image, the same lung, but the blob had become a small oblong.
“It’s smaller,” Mr. Holland said, turning back toward me. “Cancer doesn’t get smaller.” Then he continued, “I am ninety-nine percent sure. I read scans all day. I canceled the biopsy when I saw your scans. Even before I saw today’s scan.”
He turned back to the screen, then hesitated and said, “By the way, at Mayo, we never do PET scans unless we have a confirmed case of cancer. To see if it’s metastasized. To see if the tumors have grown.”
“Never?”
“Never. We do not use PET scans as a diagnostic tool.”
I went blank for a moment. Then a rage that I first misinterpreted as confusion filled my brain, up to the sockets, right up to the corpus callosum. The Mayo Clinic, surely an authoritative place that a doctor might consult, doesn’t use PET scans to diagnose disease.
Mr. Holland left us, and briefly, a doctor came in and confirmed what Mr. Holland had said.
He and Mr. Holland ordered a bronchoscopy, explaining that they would look in the lymph nodes for noncaseating granulomas, the standard test for “sarcoid,” as well as “sweep” the lung for cells and get as close to the lesion, or whatever it was, as they could. He gave me a brochure with a pale pink and lavender cover with “Sarcoidosis” written on it. I keep it now as if it were holy scripture.
We had spent a total of forty-five minutes with Mr. Holland and another twenty minutes with the doctor. We walked out of the examining room area through the double doors. As we passed through the hall, I saw Mr. Holland sitting at a computer screen with another doctor looking over his shoulder.
“Thank God,” Vincent said, as we walked out the double doors, “we came to this place.”
It must have been about four in the afternoon. They had talked to us as if we were their only patient. I walked across the waiting area toward the floor-to-ceiling windows.
I stood there in the sunlight looking out at the bluffs. A light snow was falling. I called Dr. Mesipam and left a message on his machine. I told him that Mayo had all but ruled out lung cancer. That they thought I had something called sarcoidosis. And what they said about PET scans. How right he had been.
I haven’t yet forgotten how I felt that weekend, when I was recalled to life. By the hard work and grace of Mr. Holland, not a doctor, not a priest. For twenty-five years, he had contemplated and become expert at scans. Vincent and I rejoiced, as far as one can in Rochester in March: we feasted at different restaurants for breakfast, lunch, and dinner. We followed the crowds in the subways and the over-the-street walkways to the stadium where our girls played in a basketball tournament. We walked, very briefly, along the icy river. I did not care what we did. The life around me was not mine, not yet. I might never regain the oblivious, but I could walk close to the healthy people near me, and rather than hate them, as I had in the train station in Los Angeles, I could love what they were, living bodies, enfolded, like me, in the world.
On Monday morning a Mayo nurse called me to say they could do the bronchoscopy earlier. I would not have to fast as long.
Back in the pulmonary section, I sat in a lounge chair, and Vincent sat beside me. A nurse stayed with us the whole time. A bronchoscopy is done by sending a flexible tube through the throat and windpipe, into the lungs. It has on it a tiny viewing device. The doctors would also take tissue samples with the same apparatus. Two people came in with a little cart to put in the IV line. Two people, Vincent noted, are more efficient than one, because one is unwrapping the needle while the other is talking and then inserting the needle. Then they were gone.
The nurse said, “They are washing down the room now and drying it. Then you. Very soon. Ready?”
She covered me with two warm blankets and wheeled the chair down the hall. I didn’t have to get up. She would be beside me, she said, the whole time. I was to signal with my hand if I was uncomfortable at any time.
We entered a dim room where I saw a male doctor and a female doctor. He shook my hand, introduced himself, introduced the woman,
a resident, and then they both gloved up. They put a light gauze over my eyes and sprayed what tasted like cough syrup down my throat. They started Versed, the erase-the-memory drug, and Ativan, the I-don’t-care drug. I was aware, at some point, of the male doctor saying, “A lot of calcification in there,” and I signaled the nurse. They gave me more Ativan. And then they were pulling tubes out of my throat, and we were finished, and the nurse was pushing the chair down the hall to the other room.
She tucked me into a wheelchair. She said to me and to Vincent that she was sorry I had to be in the wheelchair. She asked Vincent where we were parked, and he said we were at the Kahler Grand across the street, and she said, “Oh, just take the chair to your room and leave it somewhere over there, and we’ll come get it.”
Suddenly we were in the elevator. I felt a mix of relief and self-consciousness: I was in a public place in a wheelchair. We came out of the elevator, and Vincent was wheeling me up the ramp to the street, when I saw a kid in a wheelchair to my left, and we came up beside her. Before this moment I had often looked at people in wheelchairs with a slightly condescending sympathy. Never having figured out what to say, I had often nodded or said hello and then looked away. They were in another country, a place I would never be. And I had always received in return a thank-you-but-no-thank-you look in reply. But this time, as we pulled alongside her, I said, “Hi.” And she looked at me with a full open smile, as if we were companions. On the road together.
Chapter 17
THE BRONCHOSCOPY FOUND noncaseating granulomas in my lymph nodes, the definitive test for sarcoidosis. My blood tests found heightened calcium levels, another sign. Mr. Holland did not make a final judgment until after all the cultures of the tissues they had taken inside my lungs had come back negative for everything else. He called me with the news. Indeed, as he had suspected, from the pattern of the scars on the scans, from the lesion that grew and shrank, from the granuloma in my lymph nodes, I had sarcoidosis.
The Moonlight Sonata at the Mayo Clinic Page 15
