Let the Whole Thundering World Come Home

by Natalie Goldberg

  I had made phone calls to the Mayo Clinic in Minnesota; to a different branch in Phoenix; to a blood expert in Seattle; to a student’s brother-in-law, who was a cancer researcher in Detroit; to a connection at the NIH in Washington, DC; and to the University of New Mexico Cancer Center in Albuquerque. All of my life I had fastidiously stayed away from the medical profession. Now my life depended on it.

  I trusted acupuncture, homeopathy, naturopathy. These made sense to me, but cancer made no sense. I was out of my league. I had to drop all of my opinions, my likes and dislikes, and fiercely go into the belly of the beast, the white-coated medical world.

  As Yu-kwan concentrated on driving, I was deep in thought. I’ll end this life. I don’t want to go on. I don’t care about these autumn leaves.

  We arrived at Aspen Vista, enchanted people weaving among parked cars and motorcycles, heads tilted back, looking at the leaves against the blue, blue sky. We parked. I didn’t move.

  “Aren’t you getting out?”

  I shook my head. “I want to go home.”

  Yu-kwan’s face jerked toward me. Without a word she turned the car around.

  The whole drive back, I considered how to kill myself. I’d never been suicidal before. But the task of ending my life was practical and urgent.

  An hour later, at home in the embrace of my sofa, I snapped out of that desire. I can’t say how, but in the release of that hunger I remembered what a friend told me as we traveled by bus in Japan. He said, “One of the forms of craving the Buddha identifies is the craving for nonexistence.” I had just been slammed into the truth of that teaching.

  12.

  I WOKE AT 6:30 a.m. with a need to get out of the house. I put on clothes and walked out the door. I had no energy. I walked the pace of a snail, the sun still behind a mountain, the light bleak. One foot after the other down the Cerro Gordo dirt road.

  After twenty minutes I passed Upaya Zen Center, normally less than a five-minute walk away. I heard the wooden han calling students for zazen.

  I went a little farther to a farmhouse. I knew the German owners were away. A little bit more and then I couldn’t go farther. I stopped, sat down right there on the side of the dirt road.

  A white car slowed. “Hey, Natalie. I saw you earlier, always practicing. Doing slow walking?” He was so cheerful.

  I looked up, could barely raise the corners of my lips. “Yeah.”

  The white car rolled away and accelerated. Dust rose from its wheels.

  Zen practice is for people with energy. Not for the soon-to-be corpses, I thought.

  I glanced at the road. Was I seeing right? A bull snake, six feet long, fat in the middle, pale yellow with large spots, was making its way across. I knew these snakes. Once, when I lived up on the mesa in Taos, I found one curled on my zafu in midafternoon when I opened the zendo door adjacent to my studio. In a panic I called my friend Sean, who drove his rickety van over the potholed road to my place. Like a snake charmer, he let it wind itself over his extended arms. Then he carried it out into the sage. From Sean I learned that bull snakes were big but harmless.

  Cerro Gordo was not a busy road, and at that hour few cars passed, but it would take only one to bounce over that snake to kill it. I was too tired to get up. I crawled into the road and lay parallel to the snake, six inches away. They’d have to kill me first.

  Up close, I could see the snake had whiskers on either side of its nose. “C’mon baby,” I whispered into the desolate air, the desolate day, this desolate life. “Move, keep going.” Its face crawled past me into the dried, prickly ragweed at the edge of the road. Its long gracious body followed. I wound my way up to standing and walked home.

  * * *

  —

  I scheduled the biopsy of the abdominal lymph node ring for Wednesday and the stent surgery for Friday. Every day that week I was stabbed for blood samples, until my veins gave out and it became harder and harder to find one. I’d never been so black-and-blue.

  I showed up for the biopsy naive to how involved it was. The interventional radiologist had to put a needle deep in my abdomen, bypassing and not piercing any organ or intestine, and remove a sample of that swollen ring of lymph system.

  A jolly nurse prepped me, and I was rolled from one waiting area to another. The surgical room was in use and not available. She kept assuring me everything would be fine.

  I’d like to say all of those years of meditation kicked in and I was tranquil. That didn’t happen. But I wasn’t nervous either. I moved into a dead state of quiet and calm. I surrendered my animal body, like a prey animal when it knows it’s caught. No escape. My body was no longer mine. I’d given up. Take me.

  Only the area where the doctor was going in was anesthetized; otherwise, I was awake. He had decided his best shot was through my back. I lay on my side, facing away. I could not move. He had told me I had to stay stone still. No problem. I was already frozen.

  Only when it was over and I turned around did I realize how dangerous a procedure it was. The doctor, using the back of his hand to wipe away the sweat running down his face, said, “That was tough. I didn’t know if we could do it.” Relieved and elated, he held up the sample in a jar.

  The next day, Thursday, waiting for Friday’s stent surgery, I was back at the Cancer Center with another needle in my arm. I was being hydrated. High calcium in the blood dries a person out. This drip was a quick Band-Aid. This time I was only in the infusion room for an hour.

  We had to figure out something soon. I needed some kind of prednisone fix until we could decide how to stop the cancer.

  Friday morning, when I showed up for surgery, my blood pressure had not gone up at all. My numbness had its advantage. I would get through. Sometimes that by itself is a victory. To get through. To continue to live.

  I was wheeled into the freezing surgical theater with eight people in attendance. I saw the urologist, in a corner breathing deeply, bending at the knees, raising his arms over his head. He was warming up, getting ready. That stent had to go through my urethra up into my left kidney. As with an athlete, it took concentration and presence. I smiled under the ten thousand fluorescent lights. A needle was jabbed into a narrow vein. I went out.

  I woke in recovery. Dr. Kind, touching my leg, “It went well. Your urethra was very narrow. I had to push hard.”

  But having the stent inside was miserable. Sometimes it hurt so much I could barely walk. But the alternative was to take it out and chance losing a kidney.

  I kept it in. It would come out when we figured out how to get rid of the cancer. And so far no cures were in sight.

  The following week I began a protocol of five tablets of dexamethasone, four milligrams each, per day. This would bring the calcium down to normal — and me to abnormal. The plan was that I would do this for four days, take a four-day break, and begin again. This was the compromise my oncologist devised, instead of the blast that the MD Anderson expert suggested.

  In the days after I stopped taking the first round of the drug, all of my physical and emotional ailments were exaggerated, amped to forty times worse than they already were. Past hurts stepped forward as though no time had passed. Bitterness poured into every part of me. Twisted old defenses and armor reappeared. I thought I was going mad, with no place to land.

  I managed to articulate my despair to a friend. “Maybe,” she said, “it’s about coming down from the drugs?” That had never dawned on me; I had been so lost in the pain. I grabbed that thread of reality — and slowly, as three more days passed, I lowered myself back down to the ground.

  * * *

  —

  My last visit to the Cancer Center was oddly bittersweet. I knew I would be leaving — I needed a radical change to save myself. My oncologist in Santa Fe was a cancer generalist; I needed a specialist in blood diseases — a hematologist. I would miss this strange place and community I was thrust into. I knew the woman who m
ade appointments, knew where the bathrooms were, knew the temp nurse who seemed to be playing a nurse in a sitcom but had no real idea what to do. I’d bark orders to her: The bag is empty; time for the real stuff; the pillow for my arm is over there. She’d smile, ignore me, and pop off on her way.

  I’d miss the attendant who weighed me, took my temperature and blood pressure, and cheerily asked, “Having a good day?” I’d say things like, “This is a cancer center. I have cancer. Do me a favor, don’t ask again.” And each week she’d ask anyway and I’d roll my eyes.

  I was there for another hydrating session; she saw my desperation and asked, “Stress level? One to ten?”

  “Do you have an eleven?”

  She took things into her own hands. She surreptitiously closed the door of the windowless room and as the pressure machine pumped my arm, under the brightest fluorescent lights in America, she commanded, “Let’s pray.”

  Sure, what the hell.

  We squinched our eyes shut and called on Yahweh, Vishnu, Buddha, Zeus, Aphrodite, Allah, the Holy Ghost, and whatever god trees came from in a thick one-minute vigil that rocked the calendar with the photo of a waterfall off the wall.

  I would miss them all.

  13.

  ALBUQUERQUE, the biggest city in New Mexico, is like entering another America to people who live in Taos and Santa Fe. To get there, you drive south through the Rio Grande Gorge and down through dry pueblo land on I-25 at seventy-five miles an hour. From Santa Fe it’s a straight sixty-minute shot to the airport. That’s pretty much our relationship with Albuquerque.

  When it rains in Albuquerque, it snows in Santa Fe, the mountain town that makes its living on art and tourism. Albuquerque has industry, jobs, and a new top-of-the-line cancer center. Now I had another reason to go south, to drop two thousand feet in elevation.

  My first impression of the place: too slick, too institutional, too shiny and organized.

  I felt claustrophobic, defiant. But the oncologist I met with was efficient, quirky, and smart. Clearly, she knew her stuff. She suggested bendamustine and rituximab to treat the CLL.

  I knew about bendamustine. It had been used in East Germany for thirty years but had only come to the States recently. It had very good results. I knew of an eighty-year-old in Santa Cruz who went into remission taking it.

  But I also knew about the dark side of the drug. “Do you know Mark Keltz?” I asked her. Mark was an old hippie friend from Taos. A year ago he had a single treatment of bendamustine in this very place — for CLL, the same cancer I had. His bone marrow production was wiped out. Normally with chemo drugs, the entire immune system gets knocked back, but it returns within a day or two, or at least in time for another treatment. His didn’t come back; for the past year he’d needed weekly transfusions.

  “Everyone at the center knows Mark. It was a very unusual case.”

  “Well, if that happens to me on this stuff, it’s over. I can’t handle a year of transfusions.”

  “Then it’s clear you should take ibrutinib instead.”

  Bingo. That was the drug I’d wanted from the beginning, back when I’d first heard about it in Houston. But it had just come out, and the FDA allowed its use only after something else — for me it was the fearsome monoclonal antibody — had been tried and failed. I wasn’t eligible then because I hadn’t yet tried Oh Fat Tuna Man, but I was now.

  You took three capsules every day, and it didn’t mess with your DNA or wipe out your immune system. It targeted B-cell malignancies, stopped the enzyme Bruton’s tyrosine kinase, which is essential for cancer survival. The catch: you have to keep taking it as maintenance after the cancer is gone. I would never be drug-free. And ibrutinib had been out only a year, so no one knew how long it would work.

  Cancer was insidious. I’d heard that sometimes, when a certain type of cancer is being destroyed by a drug, the cancer will morph into another kind that the cure doesn’t treat. I think: Only cockroaches and cancer will survive the atom bomb.

  “Ibrutinib is probably a better choice for an elderly person,” the oncologist added after my long silence.

  “Are you calling me old?” I’d already had a similar discussion in Houston.

  This oncologist was knowledgeable and alert — but I could tell that if I became emotional in any way, she’d respond with statistics, facts.

  I liked her, but she wasn’t quite right. At the same time, I knew I couldn’t be too picky. I had to begin some protocol soon. Back to square one: How do I find a doctor that’s right?

  I’d given up on going all over the country to find the right doctor. I was too weak, and the stent was killing me. I needed treatment here in New Mexico.

  The University of New Mexico Cancer Center had a growing reputation, and a family physician I knew in Santa Fe almost whispered to me, as though it were sinful ever to try to challenge the mighty empire of cancer in Houston, “It’s as good as MD Anderson.”

  I called my former girlfriend Michele, who was a lawyer for the university. “Can you get me the name of a good blood doctor at the university?” I knew they were called hematologists, but there was pleasure in making them sound like Dracula — or curanderos.

  She called me the next day. “I’ve got the name of a hemotologist who had to appear for a hearing. Everyone gave up on her patient as good as dead, but this doctor persevered and saved his life. My colleague said she knew her stuff.” Michele hesitated. “He said she was a saint. Brought up in Albuquerque, only went to New Mexico schools.”

  “What’s her name?”

  “Dulcinea Aragon.”

  I called Dr. Aragon’s office, but she was impossible to get an appointment with. I got off the phone and paced. Who do you know? Who do you know? I was back at zero. I didn’t know anyone. Think, Nat, think outside the box.

  A light came on. Rob Strell, an old boyfriend from when we were in our early twenties. We moved to New Mexico together. Now he was a prominent designer and architect in Albuquerque.

  I called him and left a message explaining my situation. “Do you know anyone who can get me an appointment with Dr. Aragon?”

  Twenty minutes later the phone rang. It was Rob. “I know a child oncologist at the university who’s best friends with her. His boyfriend has worked for me. He’s sending you his e-mail and the information he needs. He’ll give it to her tonight. She lives nearby.”

  Even then it took ten days to get an appointment with Dr. Aragon.

  This oncologist had to be the right one. I couldn’t mess around anymore. The cancer was gaining momentum, and the calcium wouldn’t stay down long. So far that kick of drugs had squelched it, but I simply wouldn’t take the second four-day round. It was only a matter of time before the cancer would gnaw at my bones again and dump calcium into my blood.

  14.

  ALMOST EVERY EVENING, Upaya Zen Center dropped off food for me. Joan Halifax either called or visited every day. Whenever Rob Wilder cooked chicken, beans, and rice, he made enough for me and Yu-kwan. A woman I never met named Jane left elaborate macrobiotic food in paper containers at the front door. Susan Voorhees, my yoga teacher, cooked dinner for me every Tuesday. David and Mark down the road came around 8:00 p.m. on Thursdays with more chicken, chips, guacamole. The first time, they delivered brownies that David had just baked, still warm. I didn’t tell him we had stopped eating sugar. I danced around the brownies for half an hour, then plunged in. One friend, who is not a good cook, hired a caterer to bring twelve frozen packages of chicken soup to be popped in a pot whenever we were hungry. I asked Susana to make her wonderful meatballs, and I ate them for days. Ann brought over a roasted chicken she cooked on a Saturday; Annie, gazpacho; Onde, chicken soup, nongluten breads. Yu-kwan came over almost every night for dinner.

  The food was endless. Sometimes I wasn’t well enough to eat anything, but something was always left at my front door — a woven basket full of fresh apricots, tulips, a mum b
ush, presents from my students.

  Visitors I hadn’t seen in the last six months were nervous when I opened the door. What would she look like? A Holocaust survivor? I’d lost twelve pounds, but I could afford it. In fact, the weight loss — and even more, all the rest, the not traveling, the being home all the time — was good for me. People’s faces relaxed when they first looked at me. “You look good.”

  “It’s the cancer, the secret beauty cure.” What else could I say? I may look okay, but I’m in hell.

  One friend, when I told her I’d canceled my June travel plans, said, “Oh, you’ll get to see your roses.”

  I’d planted rosebushes helter-skelter when I first moved in and figured I’d made a mess of my garden. With the dry, hot weather we had in June, I was certain the roses would look terrible, but my friend was right. I was finally home enough to behold the pinks and yellows and reds. I had a real rose garden. It was gorgeous.

  Some days I was way too tired to do anything, but I’d still walk outside and put my fingers in the soil. The flowers lived and died; the sour cherries, peaches, pears, came after white blossoms. The fruits not picked fell to the ground. No fuss. No complaints. They lived out their lives.

  Each day the sun came over the mountains. Each night the coyotes shrieked. I loved this life. All of it.

  * * *

  —

  The man who escorted me, Yu-kwan, and Annie to a small room to await Dr. Aragon told me, “She could work anywhere, but she has committed herself to twelve years here.” His eyes filled with tears. He was proud of the homegirl.

  Yu-kwan was still in the middle of chemo treatments. She wore the red woolen hat my friend Ann had knitted for her. This was the only time during her cancer that she came with me. She wanted to meet this doctor.

  After a twenty-five-minute wait, which is short for these institutions, Dr. Aragon sauntered in. She wore a snappy black-and-white dress with nylons and heels. Young, probably in her thirties, pretty, with a big smile. She shook hands with each of us and sat on a stool opposite me. She asked us to call her Dulcinea, not Dr. Aragon. She explained that she had already consulted with the other oncologist. “We both agree — ibrutinib seems the best course.”