The Moonlight Sonata at the Mayo Clinic (20 page)

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.

T
HE 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.

Sarcoidosis was discovered and named in 1899, when the Norwegian dermatologist Caesar Boeck found skin nodules characterized by “compact, sharply defined foci of epithelioid cells with large pale nuclei and also a few giant cells.” Thinking this resembled sarcoma, he called the condition “multiple benign sarcoid of the skin.”

Sarcoid’s marker is microscopic clumps of inflammatory cells, granulomas (found in my lymph nodes), that clump together and leave deep, grainy scars. Think of them, one specialist said, as a football huddle around the elusive cause.

Sarcoid can affect almost any organ in the body. “An enigmatic multisystem disease,” said
The New England Journal of Medicine
. When too many of these clumps form in an organ, they can virtually destroy it.

Among autoimmune disorders, it is considered rare, but some specialists think it’s far more common than the medical world imagines because it often has no symptoms. One doctor told me that if he took cuts across my body every millimeter, he would find granulomas in every organ.

Researchers think that something in the environment may cause sarcoid. It may be bacteria. Pine smoke or pine resin was a suspect: hence the doctors’ interest in the fire I was lighting when I first saw the blur. Mold. Whatever the cause, it is found all over the world, everywhere and in every place.

Those of us who have sarcoid continue to fight its cause with our immune systems, a ghost in our bodies. I, obviously, because of my mother, have a genetic predisposition to it.

Sarcoid can kill. The lungs stiffen, the heart is scarred, the kidneys fail. The entries on sarcoid support group sites are full of pain and sorrow: sarcoid in the throat, in the esophagus, in the lungs. His breathing gets harder and harder, one man wrote, “Please help me keep the will to live.”

Because the disease affects so many different parts of the body, a patient can end up with lots of doctors. I have, as of this writing, seven. All of us have a lung specialist, as sarcoid always affects the lungs. It often affects the eyes and kidneys. I am lucky to have such excellent medical insurance, to be able to travel to find the right doctor. To have had the support of my local doctors to persist. (One of my doctors, searching for just the right word to describe me, said, “Oh, Ms. Gallagher, you have been—you have been—a most thorough patient!” I burst out laughing.)

Having a diagnosis changed everything. The long loop in which I had spent my nights—What could I have? Am I on the wrong drugs? What if I have something that requires other drugs? And what if I have lung cancer? What if it was cancer all along that caused this?—that loop was gone.

It changed my doctors’ attitudes. I found them to be more focused and, I saw later, less anxious. They knew what they were dealing with. It had a name.

When I was a child, a friend and I played a game: Fortunately and Unfortunately.

“Fortunately,” Fred would say, “Pete escaped the shark by climbing into a boat. Unfortunately, the boat had a hole in it.”

“Fortunately,” I would reply, “a man plugged it up. Unfortunately, the shark bit another hole in the boat.”

Fortunately, I had a diagnosis. Unfortunately, very few doctors know very much about sarcoidosis, and almost none of them are on the West Coast. It is not uncommon for a definitive diagnosis of sarcoid to take as long as mine did. (In a comic, “Brief History of Sarcoidosis,” posted on a sarcoidosis support site, a fellow patient wrote, “1958: Scientists and doctors from all over the world meet at Brompton Hospital in London for the first ever conference about Sarcoidosis. Since nobody knows anything about the disorder, they shortly retire to brandy and cigars.”)