I asked for the name of a good oncologist from my primary care doctor and made an appointment.
For the second time I pulled open a door next to the word CANCER on the wall. Yu-kwan was beside me. She was living in Santa Fe now, in my old art studio, two miles from me. The flying back and forth became too much, and I think New Mexico, after thirty years in Manhattan, was an adventure for her. I often thought of the dust accumulating on her dark furniture in New York. The plan was for her to live half-time in Santa Fe, but she rarely returned to the city. She had no time — I had to show her the red hills of Abiquiú, the Jemez hot springs, the cows, the deer in fields. She had to taste green chiles rellenos, burritos, tacos — all New Mexican style — and how could she miss a sunset, the green of cottonwoods, or how the snow fell on piñons and junipers in the Sangre de Cristos.
The oncologist this time was lovely, warm, cheerful, and willing to answer any question. She told us that immune boosters can actually feed the cancer, which uses the booster to grow. You name it — echinacea, Ester-C, goldenseal, osha root, olive leaf, zinc, oregano, Chinese herbs, homeopathics. I had taken every one of them when I had the flu, the way my friends did, but had never understood why they didn’t help me like they helped them. I only managed to spend a lot of money.
The doctor felt my neck, underarms, groin. No enlarged lymph nodes. I didn’t have night sweats. This was good: no outward manifestation. The white blood cells were high, as usual, but nothing else too alarming. The oncologist said I must still be at zero. I mentioned I had irritable bowel syndrome.
“Maybe we should do a CAT scan,” she said. “Find out if anything is inside that we can’t see.”
A week later I met with her alone. I felt sure nothing would show up on the scan results.
The oncologist, Dr. Rudolf, said, “The scan shows you have a ring of enlarged lymph nodes surrounding your abdominal aorta.”
My cancer was lymphatic, and the lymph system spreads throughout the body. My cancer had a huge territory in which to manifest and park itself — in addition to traveling around in my blood.
“Why is the cancer there?” I asked.
“This is just a theory, but we think it attacks where it first began, the weakest point.” I pictured all of those cookies in the café years ago. “I’m concerned that if the lymph nodes keep enlarging, they can cut off the blood flow to your legs.”
“Am I still at zero?” I asked, holding tight to a past glory.
“I’d have to say you’re now at one.”
That’s all I had to hear. “Who is the best oncologist in the country for CLL?” I asked.
She told me. “Dr. Irving Buckingham at MD Anderson.” She added, “It’s impossible to get an appointment.”
“I’ll get one.” Alert, focused action was something I knew well.
The next morning I called everyone who had a remote connection to Houston, or to Texas, or to anyone in the medical world. Think, Nat. Who do you know? No one I contacted had a clear conduit to what I needed, but everyone said they would do what they could.
At three that afternoon the phone rang. It was Dr. Buckingham’s receptionist. “Buckingham wants to see you at the end of next week.”
“I’ll be there.” I still have no idea who got through.
* * *
—
Yu-kwan and I flew out. It was February, but in Texas it was warm, with soft air and small buds hinting on branches. A shuttle drove us from the hotel at 6:30 a.m. We wanted to walk, but MD Anderson was a city unto itself, and we would have gotten lost on our own.
Three other couples boarded the bus. They were veterans, old hands at this early travel. I looked at them. It was clear with the Kansas couple who had cancer. The man had a thin, drawn face, a right hand that shook, downcast eyes. His head leaned back against the window. His wife attempted cheerfulness. “It’s snowing now where we live,” she said, meaning, It’s better here. No, it isn’t. She knew that. We all did.
The lights were stark in the hallways. Even the rickety elevator in the old part of the building was glaringly lit. I looked at Yu-kwan. She looked green in the light.
We entered the sprawling new section. It wasn’t clear where to go.
Eventually we found the right desk. I was handed an iPad to fill out forms. I didn’t own an iPad or an iPhone. I struggled to use the strange keyboard to answer simple questions such as name, address, and birth date. I punched two letters in, had to delete one. This pattern continued until Yu-kwan grabbed it from me. “I’ll do it.”
Yu-kwan was dressed up. She had done research on this number one doctor, Dr. Buckingham. She had watched videos of lectures by him and told me that we should be respectful around him. But I had not dressed up.
A gray-headed man around seventy walked through the lobby. Yu-kwan jumped up like she had just recognized Mick Jagger, “Dr. Buckingham!”
He was so startled by her enthusiasm that he grabbed her, and they locked in a big hug.
“Wait a minute. I’m the patient.” I leaped up and also hugged him.
Then he backed away. “I’ll see you soon,” he said, and he disappeared behind one of ten thousand beige doors.
A few minutes later we were in his small office. He had a medical fellow working with him — a young doctor with an English accent who was there for advanced postgraduate training. Clearly, he also wanted to be connected with this star doctor. I mentally referred to this fellow as the pipsqueak. I had cancer; I had traveled all the way to Houston. I didn’t want to meet with a nervous, inexperienced physician who clearly worshipped Buckingham and danced for his praise. But I allowed him to examine my body in front of his mentor to show off his knowledge, which seemed thin.
It was a fast exam. Then both doctors quickly pushed me to begin treatment with a new monoclonal antibody — a target therapy that aimed at the cancer cells directly, rather than taking down the entire immune system.
This involved twelve treatments — eight once a week in a row, then one treatment once a month for four months. “You’ll go into remission for two years,” they said, “and then you’ll be ready for ibrutinib. It’s our standard regime for the elderly.”
“Wait a minute. I’m not vintage. I’m only sixty-six.”
They explained that in the cancer world, anyone sixty-five or over is considered old and must be treated more tenderly. They said it’s important to avoid chemo, if possible, because it knocks out the whole immune system. Then Dr. Buckingham said, “We want you to begin treatment immediately.”
I shook my head. “I came here for a consultation, not to begin anything.”
Dr. Buckingham looked stern. “We’re afraid the ring of enlarged lymph nodes will close off your lower aorta.”
The two of them played off each other. Pressure, fear, act quickly. No time to think.
Pipsqueak gave me a prescription for twenty prednisone tablets. “Begin tonight and you’ll be ready for treatment tomorrow.”
“I want to see what my blood results are first,” I said. I was scheduled to go to a lab down the hall right after our meeting and get twenty tubes of blood drawn from my narrow veins.
Dr. Buckingham nodded. “Fair enough. But my recommendation stands. Let my office know what you decide.”
After the blood work, I had to meet with five different social workers, clerks, and administrative assistants. We left the bowels of commotion and chaos in late afternoon.
That night in the hotel room, Yu-kwan researched this new treatment, the name of which was impossible to pronounce. It had a long list of possible serious side effects.
I was calm, talking intermittently to my Minnesota friend Carol, who was a physician, and who was also doing massive research into my cancer and Dr. Buckingham’s proposed treatments.
The question was: Should I start tomorrow? In a month I had paperback editions of two books coming out. I also had a plan to meet with longtime s
tudents in Atlanta to sit at Martin Luther King’s grave, and then go on an idiosyncratic tour of bookstore signings in North Carolina. A month after that I was going to France.
I gazed out the big hotel window, then flopped on the bed, staring at the ceiling, while the wheels of research at the nearby table and in the snows of the Midwest churned out information.
Dr. Buckingham had assured me I could quickly do four treatments, if I started right away, then wait until later, after all of my trips, to do the next four.
“Uh, Nat, I don’t think you’ll be robust after even one,” Carol warned.
The next morning the pipsqueak met us in the office. “Where’s Buckingham?” I growled. He scurried out like a squirrel and rejoined us when Buckingham made his entry.
They raised the pressure on us. Better to begin here at Anderson, where we’re experienced with this new treatment. The first time, you might have some complications that we can easily take care of.
I called my oncologist in Santa Fe, “You’ll be very tired. It will be difficult for you to travel home right away.” That made sense, but I finally gave in. I didn’t want to be completely stupid. The fact of my cancer was now evident even to me.
I rushed upstairs to the pharmacy to fill the prednisone prescription. It was a Friday, the worst time to begin. If anything went wrong, only doctors on call for the weekend would be there.
Each treatment, if all went well, would take eight hours. It involved dripping a solution into a vein in my arm. I was going to begin in early afternoon. I could possibly be there until late in the evening.
Thirty people’s prescriptions were ahead of mine. I sat in the waiting room, paging through Woman’s Day and reading about nutritious quick-to-make meals for families. I called my friend Wendy in California, told her I was going ahead with the treatment. She offered encouraging words, but I could tell she was astonished by my sudden decision.
Yu-kwan joined me at the pharmacy. “Look at this flier the nurse just gave me. They should have given us this last night.” She thrust a colored pamphlet in my face. The side effects were so much more blaring in this pamphlet than anything we’d seen on the Internet. Even possible death. Of course, the pharmaceutical companies had to cover themselves, mentioning every possibility, though the chances of their happening were minute.
“Let’s get out of here,” I said. Yu-kwan nodded agreement. We grabbed our coats and ran down the back stairway.
I called Wendy from the stairwell. “I’m not doing it. We’re heading for the Rothko Chapel and Cy Twombly’s exhibit. It’s too beautiful a day.”
“Do not separate a woman from her art,” Wendy howled.
I had cancer; I had to meet it, but the threat of closing off the lower blood supply to my legs wasn’t convincing enough right then. I also knew that cancer was counterintuitive. Cancer cells lived outside human intuition. They barreled through the body and began to multiply, spread, and grow. Yes, in the future I would have to trust what the doctors said. But not this time.
Yu-kwan and I hit the streets like two escaping convicts. The natural light outside was calming. The last winter patches of gray and yellow grasses, the concrete curb, the changing red and green traffic lights, were a vision from heaven. I touched the bare branches. It felt as though they were about to break into blossom, though the buds were still hard stones.
I had visited the Rothko Chapel four years earlier. When I first saw the gray hollow of the chapel that Mark Rothko had designed right before he committed suicide, I could not relate to it. This time it resonated. It gave no consolation, no hope, no place to turn. This now felt honest, true.
The cancer would not leave me. What I had was a chronic condition. What I had was a human body that would die.
* * *
—
When I arrived home, I opened my computer to an e-mail from Nancy Conyers, a student who had studied with me intensely years ago. I’d heard she had breast cancer. She included a link to her essay “This Is What Cancer Does,” which was published on The Manifest-Station. I opened and read the first paragraph:
This is what cancer does: it makes your body unknown to you, an alien presence dragging 50lb weights on each ankle and around your neck. You are exhausted, so exhausted physically and mentally your brain can’t send proper signals to get your unresponsive limbs moving. One time, for three days, you couldn’t even wash your face because it was too much effort to lift your arms. When you couldn’t stand your own smell anymore you tried to take a shower. It wasn’t your own body odor you were smelling, it was the drugs you’d been infused with: TCHP, Taxotere, Carboplatin, Herceptin, Perjeta. They were seeping through your skin, through every orifice and the metallic medicinal smell was making you as nauseous as the drugs were. You turned on the shower but the weight of the water pushed you against the shower wall and you struggled to turn the water off. You sat soaking wet on the side of the bathtub until your spouse came to check on you.
My first thought: My, she has become a good writer. She expresses herself well.
My second thought: No thought. Blank. My heart screamed, All this is not possible.
5.
THREE MONTHS AFTER visiting Houston, in the middle of May, I met with the Santa Fe oncologist just before I was to leave to lead a writing retreat in central France. A lymph node on the right side of my neck stuck out. It was the first outward physical sign of my illness. She felt another swollen node lower on my neck. I ran my fingers over them both.
“I don’t think I can let you go to Europe for a whole month,” she told me.
After months of grinding avoidance and resistance, I surrendered. Just like that — I gave up. “Can we start tomorrow? If I wait over the weekend, I’ll chicken out. I have to act right away.”
I knew this meant canceling everything for the rest of the summer — not just the French retreat but the film conference, the Taos party, the weekend travel to Colorado to meet an old friend.
I went home and composed a letter to my students. They had all bought their overseas plane tickets months ago. I engaged two of my longtime students to take my place.
With deepest regret, I won’t be able to travel in June. But I want you to go anyway. I want you to swim and float in the lake for me, to see the sun rise over the green pastures, be in the old stone barn converted into our zendo, and sit in the circle, breathe with each other, hear the bell ring, share your writing, study even harder the assigned books, walk in the afternoon the trails and country roads to small farm hamlets past wildflowers and brown Limousin cow herds. Eat those French fries, baguettes, local cheese, that amazing butter, salade verte, everything from scratch that chef Thierry makes for us from food in a ten-mile radius and serves in that white stone dining room. Let nothing get in the way of your coming. This is about practice. You signed up. Be there to Sit, Walk, and Write. I will be there with you.
The students had to read Madame Bovary — it came alive in that rural setting — The Belly of Paris by Emile Zola, and Paris France by Gertrude Stein. On the last day, Dorotea, during formal tea, would surprise everyone by reading aloud the madeleine section of Proust while they all sipped local herbal tea and nibbled at those supreme cookies made in a local oven. My students would not go uncultured. But now they would go unteachered.
I was miserable. I’d looked forward to this for months. Everyone would be there but me.
After writing my sweet letter, I burst out crying.
Each day, after two infusions, shot up with that monoclonal antibody, the pharmaceutical name of which I still failed to pronounce correctly, I talked to the retreat, as promised, for an hour on Skype. What could I say to them, tanned and happy in another reality? I quoted Basho, the great Japanese writer, and asked them more about themselves.
It was June in my garden. The grama grass was growing long out the window as I talked across continents and the large ocean.
Buson, a l
esser-known haiku writer, leaped into my mind and I recited:
I go,
you stay;
two autumns.
That haiku quivered through me. Death felt so close in that moment it broke down any defense. Here I was. This was my life.
Unplanned, I looked straight at that Skype screen, at my darling ragtag students on creaky chairs and zafus a million miles away and recited another haiku:
On a single blade of grass
a cool breeze
lingers
I pronounced the haiku writer: Issa.
I put my hands together in a bow and snapped off the computer.
I turned my attention to what was in front of me. To what was in me: cancer. I finally met it.
* * *
—
Cancer doesn’t hurt by itself; instead, it moves in on organs — the lymph system, the lungs, kidneys, intestines, even the tongue, and the brain — and cuts off vital functions. I liken it to mistletoe, suffocating and strangling the branches of the piñon in the mountains around my home. Nothing personal. The mistletoe wants to live — everything wants to live. Working in my garden, I watch this imperative to survive — the roses, the poppies, the raspberry plants, even the young cottonwood, twist over each other and over the fence to get sun.
Cancer cells come from the body. That’s hard to contemplate. We think of cancer as a monster from another planet, but it’s our planet, only slightly twisted, turned, reeling. In my case it was the white cells. They begin in the bone marrow, but the cancer cells don’t fully develop, so they can’t fight disease. They either fill the bloodstream or park in the lymph nodes.
We all have cancer cells, but usually our immune systems recognize those cells and destroy them — or, as one oncologist explained, they are recycled through the spleen and are used again. Nothing wasted.
But with cancer, the body stops defending itself, can’t recognize the cancer cells to stop them.
Let the Whole Thundering World Come Home Page 3