“Positive margins,” they say. We are in the room with doctors now, and I am listening but not hearing. But it’s a local recurrence. It only spread to the groin. It didn’t move very far. I am blowing spires off of dandelions one by one, sending them out to grow miracles.
Anthony’s cancer was in one place, and Dr. Coit took it out. We hold on to that until it isn’t true anymore. Then we just adjust the markers. Okay, now it has metastasized but only right near where the original tumor was—not far away like other people’s, not like the people who are dying. These are the games we learn to play in our heads.
“Do you understand what this means?” A man in a white lab coat is talking; his mouth is moving, but I can’t hear him. He points to an X-ray, and now I can’t see him in the glare of the light box. There are suspicious areas on his lung. They don’t call the suspicious areas tumors—“pulmonary nodules,” they say. Now is when we begin lowering the bar.
We sit through weeks of meetings, shuffle in and out of exam rooms with X-rays—white coats on one side, Lee and Anthony and I on the other. The heads of the oncology departments at Sloan-Kettering: surgical, radiation, chemotherapy. We learn the vocabulary of treatment: MAID chemotherapy, stereotactic radiation therapy, spiral CT scans, antiangiogenesis. We go to Columbia Presbyterian in search of better news, but it’s the same.
If you were my brother meetings, I call them.
“If you were my brother, I would tell you to do chemo,” one doctor says. “If you were my brother, I’d sign you up for five rounds.” We go to New York Hospital, and the doctors say, “It’s up to you, but if you were my brother…”
This is how it happens. I have been studying it. It recurs close to the primary site, and then it metastasizes farther away, sometimes to the groin, then on to the lungs or the liver. And there it is, as though his cancer has read the instruction manual and is following the directions.
It steals in the moment we feel invincible. It depended on our denial, our disbelief. Cancer is nothing if not discreet. Look at me, it whispers. I dare you, say my name on this sunny day with your future spread wide. You won’t, of course. Cancer counts on it.
It happened so quickly. He had cancer in February, then they cut it out and he was declared “cancer-free.” He was “cancer-free” at our wedding, “cancer-free” in September. But now it’s October, and we are squeezed into exam rooms deciding just how we will fix this thing. Lee takes down the private phone numbers of the doctors. I have my reporter’s notebook and write “wide excision” and underline it. I scribble down “positive margins.”
When it comes back, everything changes. We are married now. It becomes something I speak of using we, the way men will announce we are pregnant, or we are having twins; this is now ours. We have cancer. We need a biopsy. We are researching treatment options.
I become a specialist. I can tell you anything you want to know. Sarcoma is a death sentence but very rare, though that’s little comfort once you’ve got it. I learn that recurrence is influenced by the histologic type, size, and grade. I learn that low-grade is better than high-grade; that it metastasizes first to the nearby lymph nodes, then settles into the lungs; and that there are three treatments: radiation, chemotherapy, and surgery. I learn that they all have uncertain outcomes, but that surgery has the best survival rates. I bury myself in details—my own desperate religion, and I cling to it.
I produce Anthony’s cancer story, line up interviews with doctors, book appointments, assemble the team. I make phone calls and take notes and research different treatments—experimental clinical trials, new drugs, surgeries with pig valves. I study his pathology reports, his CT scans, his MRIs. I handle it all brilliantly. Anthony believes this, and I believe it, too.
His family trusts me. I can save his life, I think, and they will gather around me and bestow their seal of approval. His mother will never say to Carolyn, “I just don’t understand what it is they have in common. ABC can’t be all that interesting.” Instead she will tell her how proud she is of me.
I realize that I am being charged with this mission. I will have to take control, because I am his wife now. It’s my job. This is when we begin our endless dance of compromises—of small lies, deceptions, and secrets. A complicated and intricate set of rules created on the fly that moves us forward. Anthony wants nothing to do with any of it—the doctors, the hospitals. It’s all a nuisance. He doesn’t ask the doctors questions. His illness doesn’t interest him. We silently agree that he will have the cancer and I will take care of it. We begin a delicate waltz with denial.
2
National Institutes of Health, Bethesda, MD
November 1994 (Inpatient Record)
Admitted: 11/11/94
Discharged: 11/18/94
CLINICAL DIAGNOSIS: High-grade fibrosarcoma, metastatic, to right inguinal area.
REASON FOR HOSPITALIZATION: This is a thirty-four-year-old white male, otherwise healthy, with recurrent high-grade fibrosarcoma. A 1 cm subcutaneous nodule in right groin was involved with tumor with positive margins. The patient is admitted now for wide local excision. The patient will also undergo spiral CT scan for possible pulmonary nodules.
It is looking very grim, because the doctors are all pushing chemotherapy. Anthony listens silently. He knows that in chemo he’ll lose his hair. This is all he needs to know.
Then John calls and says, “It’s done. You meet with Dr. Rosenberg next week. He’s at the National Cancer Institute. He’s the best there is.”
John has a gift for big moments, and this is a very big one. He gets us a ticket to the National Cancer Institute, a branch of the National Institutes of Health, the place we come to know as the NIH, or simply “Washington.” This is a government-funded research hospital, Memorial Sloan-Kettering’s academic older sister, the Mayo Clinic’s wise uncle. If there is a breakthrough in cancer it will likely happen here first, but you can’t just go to the NIH. You have to have the right type of cancer, or be at a stage in the disease that will benefit a study, and there is an application form and nervous waiting for all of that. Or you have to be able to do what John did: pick up the phone and call a senator, your uncle, who is at the time sitting on the Health and Human Services Committee.
NIH doesn’t look like a hospital or feel like one. From the outside it is an office building in a nameless industrial park set back on a wooded landscape in Bethesda, Maryland. The buildings are nestled in a leafy, oak-tree neighborhood, a half-hour drive from Washington. And it’s away from New York, from home, away from people who know us, who might see us going into and out of hospitals. To have our cancer in Washington is a luxury. The NIH with its empty halls, lingering doctors, sports chats in the halls, is a dramatic departure from New York.
We are invited to tastefully subtle offices to meet a smiling, unremarkable-looking man with wire-rimmed glasses, Dr. Steven A. Rosenberg, the chief of the Cancer Institute’s surgery branch. Aside from his responsibilities managing a research staff of seventy and the expectation that he will save people’s lives, he is a straightforward, unassuming man who takes pride in his job. He has a soft voice and is careful to finish pronouncing a word before starting a new one. He gives his patients time to think between sentences padded with medical terms.
“I’ve had our top radiologist take a look at your scans. There are a few spots on the lung that appear suspicious,” Dr. Rosenberg says, pointing to the scan clipped into the light box. “Here, here, and here. I suggest we follow you closely and see if we notice any changes in size or shape.” He tells us about a new CT scan called a spiral CT scan. It’s the prototype, and the NIH has the only one in the country. The picture it takes is more detailed—a hundred times more powerful than the existing technology.
“So what do we do now?” I ask. I need the next step.
“Well, we can’t even be certain it’s cancer,” he says. “It could be scar tissue. If it turns out these are tumors, your best chance is to remove them surgically, because the succe
ss rate of patients who have chemotherapy for high-grade fibrosarcoma is very low.”
No chemotherapy. This is all Anthony hears. I hear something slightly different: chemo doesn’t work. But I file that away. We schedule an operation for a wide groin excision to take care of the positive margins, and we head back to New York.
On the plane I daydream about this man. The one who is saving our life. I make a lazy list in my notebook. All the ways Dr. Rosenberg is just like everyone else: family photos on his desk, baseball games, drives a Buick. I picture him unpacking Saran-wrapped sandwiches and eating them at his desk, listening to the Orioles on the radio. I’m both comforted and disappointed by this. What you find out too quickly about doctors if you see them on a regular basis is that they are human and that you’d prefer they weren’t. I need someone who does magic.
We return to the NIH a week later. Dr. Rosenberg greets us with a smile that I will get used to seeing.
The NIH is our altered existence—our ordinary. It is a place, initially, of success, hope, love conquering all. Anthony is the star of the cancer ward, performing remarkable feats of recovery. Getting an A on all of their tests—the athlete, the honor student, ambulatory by the second day after surgery. It is a place of playful giggles, shared secrets, stealing out after curfew. The doctors indulge our stunts: Leaving the grounds without approval. Sneaking in hamburgers and beer. It is a place, in the beginning, of winks and pet names and knowing smiles. See, it’s not so bad, is it, Nut? We are newlyweds here. These empty halls are our private getaway. Anthony is in command, has everyone charmed. We sneak off campus and he is smooth talking his way out when we get caught in the parking lot. And I, giddy with his invincibility, run along after him, ready to do whatever he asks. The NIH makes the afternoon in his mother’s apartment—the day the phone rang and it was spindle cells instead of hematoma—seem so far away.
John comes down this first trip after Anthony is out of surgery. “Hey, Tonypro,” he says, strolling in casually. Anthony is happy to see him. They make jokes about nurses and sponge baths. We get some food and watch the news, and then Anthony needs to sleep, so John and I take a blanket outside. We throw it down on the lush lawn in front of Clinical Building 10, and he starts questioning me about marriage. “What’s it like, being married? I mean, what’s it really like?” We talk about gardeners and flowers. A close friend of ours is famous for his flower-gardener theory. The very best relationship has one of each. The gardener nurtures, and the flower blooms. We decide that two gardeners might work together, but never two flowers.
“I think I’m a gardener,” John says thoughtfully.
“I don’t think so.” I laugh. “You’re definitely more flower. You and Anthony both. You two need gardeners.”
“Are you comparing me with the principe?” he says, laughing.
I am drunk with the warm sun, the autumn smells. And I think that we are talking about this because of Carolyn; there are whisperings that she is back. We lie on the warm grass, and he talks about her without ever saying her name.
“Is it what you thought it would be?” he asks.
I shake my head. “I don’t know yet. My husband is in the hospital; I’m not a good one to ask.”
“So, what do you think is going to happen?” he asks, and now we are talking about Anthony. I am optimistic with what the NIH promises, and I tell him that. But I can see he’s not. He doesn’t respond, and we see the sun is going down, so we get up and head back inside.
The groin operation is uneventful. Dr. Rosenberg removes the remaining tumor, and pathology shows negative margins.
A week later we are back in New York and at Caroline’s apartment for her birthday. John makes an entrance with Carolyn. This is her official coming out. There have been rumors and sightings and John puts them all to rest here. Relaxed and dressed in black, she walks casually into the apartment beside him, holding his hand. They have been back together for a few months. Caroline hugs her brother warmly and hesitates for a brief moment before greeting his date, So nice to meet you. Her friends smile politely and then shift their focus to John.
I am sitting in the library, and the room, as it always does, shifts when she walks in, even if nobody notices it but me.
It’s an impenetrable circle, this room, it sometimes seems. I know what she’s walking into. There is a shared past here that is too intricate to explain. The kind of shared past that is communicated by winks, by facial expressions, by half-sentences—the short-cuts of intimacy. It is as if they stop talking when you walk in, and they do, in a way, because they speak to most outsiders in a different manner.
I met Caroline my first summer at Sea Song, rollerblading to her house bruised and out of breath, and fifteen minutes behind. Nice, Anthony, she teased him for racing ahead, and we were conspirators for a moment—two women who knew what men were like, who knew what Anthony was like, rolling our eyes together. We’ll be friends, I thought. But our relationship stayed superficial in a way I never quite understood. But Anthony adored her. They had fun together, laughing at a long-running joke between the two of them that I was never going to get.
I am an outsider here but a quiet one. I watch and adapt, but not Carolyn, I can see. She walks into this guarded room radiant and stubbornly original. Impulsively affectionate.
She sees me immediately and smiles big. It’s been two years, but we pick up as though our conversation had just been momentarily interrupted. Oh, now where were we? We skip all the formalities and plunge right back in.
We have been out of the hospital for six days, and though Anthony limps, no one mentions it. So the party is happy. Thanksgiving is the following week, and “Mummy,” he says, “has invited us for the weekend. I said we’d go.” She and Herbert are at their house in East Hampton and I wince. To me Long Island, even, is too far to go now, so soon. It is subtle, this struggle of ours. Anthony always pushing, me pulling back. Me wanting to stay home, to recuperate, to be close to doctors, and him on to the next trip.
“Pack a good outfit,” he says, distracted. “There’s a dinner one night with one of her friends.” A clue that I miss. We are strictly casual at his mother’s in winter—jeans and sneakers. Then a car service shows up at the apartment, and it’s the second clue I miss. I’m pouting a little and feeling bullied. I fall asleep in the car, and when it stops, we’re at Kennedy Airport. “We’re going to Paris, Nut,” Anthony says and hands me my passport. He climbs out of the car with his cane, wearing a sly grin. I got you.
He can’t walk well, but he’s defying the doctors, the ones who said, No travel for six weeks and keep your leg elevated as much as possible. We are on our way to Paris just ten days later. Our good friends Glenn and Eva live there, and Anthony plans this scheme to spend the holiday with them.
We stay in an apartment owned by Anthony’s aunt, Countess Isabelle D’ornano, on the Seine. She has two apartments in Paris and keeps this one for guests. When we arrive, we find on the bed an invitation to dinner addressed to Prince and Princess Radziwill. Europeans use royal titles the way Americans use Mr. or Ms. I saved the invitation and framed it for the bathroom.
It is cold in Paris, but we march on, lighting candles at Notre Dame, standing in line to see the Mona Lisa, shopping along the Avenue Montaigne. We wander along narrow cobblestoned streets, stopping for espresso and chocolate croissants. We sightsee until Anthony’s leg becomes so swollen he can no longer walk, and then we take a taxi to the American hospital. The doctors drain the fluid from his leg to relieve the pressure. When they are finished, we take another cab to Eva and Glenn’s for an expat Thanksgiving dinner—turkey and foie gras.
When we’re back in New York, Anthony still needs the cane, though he refuses to take it to work. It is painful for him to walk, and he cannot hide a limp, but he makes up an elaborate story about tripping on a Jetway getting off a plane. He feigns embarrassment at his clumsiness and comes home delighted with himself for fooling his coworkers. He is determined to keep his illness a sec
ret. Only a few of our very close friends know he’s had cancer at all. The next week he is back in the gym.
We spend Christmas in Mexico and celebrate the new year in New York. We go to Caroline and Ed’s for dinner to usher it in. It’s just the four of us. There is no trace of a surgery, except for the scar on Anthony’s leg. He is healthy and strong and running five miles in the park every night. There is light banter back and forth. We trade resolutions and plans. We toast to a better year, and after dinner each of us makes a prediction. “I’ll try to stay out of the hospital,” jokes Anthony. At my turn I say, “I think John and Carolyn will get married.” And suddenly the room is quiet.
“No, he won’t,” says Ed. “Caroline doesn’t even know her.”
I’m caught off guard by this—his tone, the quiet.
There is a neat change of subject; the three of them move on.
3
Anyone who knows cancer knows the checkup cycle, the rhythm—the three-month ebb and flow. The prelude to the checkups, the weeks or days before, can be worse than the surgeries. The news feels worse than the treatment. Our checkups are a day-trip to Washington. We take an early shuttle to Reagan National, rent a car, and make the thirty-minute drive to the NIH. Our checkup takes a couple of hours, more or less. Enough time to draw blood, X-ray Anthony’s chest, drink the orange contrast solution for the CT scan, meet with the radiologist, and then we fly back.
At our January checkup, the suspicious areas on Anthony’s lung can still be clearly seen on the CT scan. Dr. Rosenberg isn’t convinced the shadows are tumors and decides we can go one checkup longer. We are still hoping that it is scar tissue.
Carolyn calls late one day in February and invites me to one of her fashion shows at Calvin Klein. “Sure, I’ll go,” I say. I am sure I sound much too eager, but she is genuinely happy, as if I am doing her a favor. “I’ll leave your name at the door. Just tell them who you are and they’ll let you in. Can’t wait to see you!”
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