I nodded. “Let’s get it started.” I already liked her, and I couldn’t waste time.
“I have to write a prescription, and the pharmacist downstairs will order it. They’ll send it to your house. It shouldn’t be long.”
“And I just start taking it? That’s it?” Like an antibiotic for an infection? All my effort, machinations, now reduced to a dose a day popped in my mouth?
“Yes.”
* * *
—
Days passed and the drug didn’t arrive. I called the pharmacist. She discovered that more paperwork needed to be completed first. “Where does your income come from now? You only get social security?”
I was desperate to start. “I have some savings. Please, maybe I could pay for the first month?”
“No, it doesn’t work like that. And you don’t have drug insurance?”
“I will, beginning in January. I got bad insurance advice last year. I might have a royalty check in November for a book I wrote.” I knew it wouldn’t be much, but I was embarrassed at this point to have no income.
“A what?” She negated that. It was too out of the ordinary for her. “I’ll see what we can work out.”
* * *
—
The phone rang three days before my next oncology appointment. “Hi, Natalie.” I could hear it was Dulcinea.
“The ibrutinib hasn’t come yet,” I said.
“It’s good you didn’t start it. Dr. Smith and I presented your case to the hematology panel that meets once a month. They’re so smart. We’re so lucky to have them here. They are not convinced that you have CLL. Yes, the biopsy you got in Santa Fe says it is, but how do we know about other places in your body? They suggest you get a PET scan. That will tell us exactly where the cancer is and to what extent. From that map we can take several biopsies.”
I blanched. “Several?”
“I agree, it’s too much. How about if, after the scan, we decide then? They are concerned you also have lymphoma.”
What kind of lymphoma? A PET scan? The appointment for the scan couldn’t even be made in the radiation department, but in the nuclear department.
The test would be on November 4, a Tuesday. All of this digging around was postponing treatment.
* * *
—
Susana picked me up on the fourth at 6:30 a.m. She was not a morning person, but a tenderness I’d never seen in her before came tumbling out. It was still dark as we barreled down the highway. The sun peeked over the wide horizon as we hit Santo Domingo Pueblo, then San Felipe and its big casino sign. The Sandia Mountains appeared as we got closer to the city. I asked Susana to relay the international news she had read in the Times over her morning toast and cheese. None of it was good.
The receptionist at the scanning center was peppy, but I couldn’t get her to fax the results to my doctor Erica in Santa Fe. Instead, I would have to fill out forms and take them to another department.
She told us the scan would take two hours. She said to Susana, “Go have coffee across the way.” She pointed out the door.
The room where I sat in a cotton gown was cold. The nurse couldn’t find a vein to inject an intravenous contrast. Too much blood had been taken in the last weeks. My veins had collapsed. After three stabs I asked, “Please, can someone else try?”
She went to the emergency techs. A new person appeared. After two stabs, the needle went in. After a half hour of the contrast filling my veins, I was ready for the big white tubular machine.
The tech asked, “What kind of music do you want?”
“Classical, please.”
She placed big earphones over my ears.
Intermittently, when she wasn’t giving instructions, I could hear music, but over the kick, bolt, crank of the machinery, Mozart sounded like a cracked plate dropped over and over.
Eventually the scan was finished. I exploded into the waiting room.
Susana greeted me. “I was getting worried. It’s been three hours.”
“Let’s get out of here.” By now we’d become good at bolting.
Neither of us had eaten for hours. We got a restaurant suggestion downstairs from a clerk near the exit. “Down Twelfth Street, in a residential area.”
The corner café was already phasing over to the midday meal, but they let us order huevos rancheros, the special that morning. The frijoles were pale and bland, but it was enjoyable to try a new place in the foreign territory of this sprawling city.
I had noticed a sign at the front door: TWENTY PERCENT OFF ALL SPECIALS. I reminded the waitress when she gave us the bill, and she reduced the amount.
I smiled, knowing Susana, who was shy and proper, was aghast. They let us have breakfast when lunch was being served; that should have been enough. But I was a New Yorker and loved to flaunt my chutzpah in front of her.
* * *
—
The very next day, Wednesday, November 5, I was heading down to Albuquerque again at a more decent hour: 9:30 a.m. Annie was a cautious driver, and we putted along in what felt like slow motion. I was in no rush to hear the PET scan results.
Dulcinea walked in and handed me the report. Annie was poised with her notebook and pen to jot down comments. “…Hypermetabolic activity is present throughout thoracolumbar spine, ribs, sternum, scapulae, and pelvis, suspicious for high-grade involvemen….Lymph nodes: markedly hypermetabolic…”
At this point I was retreating down some barren highway in Nebraska, a long time ago, in another life.
I came back for a moment to hear that my marrow was rocking out with cancer. “Activity throughout, markedly avid nodes above and below the diaphragm…”
Now I was back on the highway. I think I’ll stop at the next Conoco, get me a Clark bar. Do they still sell them?
“We need to get a bone marrow sample. See here.” Dulcinea showed us the lit areas in moving pictures on her computer. No way around it — the cancer was ablaze, “Most of these areas are technically difficult to biopsy, especially adjacent to vascular structures.” She paused and shifted over to a diagram. “But here, where we normally take marrow samples through the hip bone, it’s also lit up, so we can do this safely.”
They were going to drill through my hip bone. I finally spoke up. “Okay, we have to do it right now. Not tomorrow, not late afternoon. I can’t think about it. Right now.”
She got it. “There is a lot of cancer,” she said again, and then ran out of the room to set up the biopsy.
Twenty minutes later I was lying on my right hip. A very competent nurse was numbing the left hip, where she would go in with a needle. Her words were reassuring. I relaxed and made conversation with the assistant, a homeboy, as the needle plunged through my skin, my muscle, my bone. “Tell me some good places to eat here in your hood.”
He named some, all Mexican.
“Any other kind?”
“Nope, never go to anything else.”
“Indian? Italian? Chinese?”
He shook his head.
The nurse said, “We’re almost there,” meaning the needle was reaching down through the bone into the marrow.
A minute later I felt the needle withdraw. “I’ve got it. You can turn your head and look.”
I saw a jar of liquid. Floating on the bottom was what looked like a mushroom section with gills exposed.
“Some people are sore after. Some aren’t. The results will be here on Friday or Monday. Dr. Aragon will call you,” The nurse said.
Ten minutes later, patched up, I met Annie in the lobby.
I didn’t want to drive home right away, so we went to Bookworks on Rio Grande Boulevard. A few stores down was a dress shop. I limped over to it, my hip very sore. I bought a gray cashmere sweater for myself and a bright cardigan for Yu-kwan’s birthday the next week.
Annie and I hardly talked on the drive home. It was dark out and I’d dawdled
as long as I could before returning to Santa Fe.
Yu-kwan swung the door open. “You’re so late. Where were you? What are the results?”
We were standing in the hallway. Annie hesitated, then started to tell her, withdrawing the results from the folder.
I listened for about a minute, then exploded in a small tantrum. “I’m going to bed.” I dropped my purse and coat on the floor, ran into the bedroom, and slammed the door.
As I lay in bed, I heard their voices through the wall, intense and undecipherable.
I had been battered for the last six weeks — needles, tests, biopsies, drips, machines, sterile waiting rooms, stiff chairs, long waits on the phone filled with Muzak. It had been nonstop. Think, Nat, think. What can you do?
Once before — more than a decade ago — I was on a weeklong Zen retreat in Saint Paul. On the sixth evening, when I went home to my small third-floor apartment, vulnerable and open, I made the mistake of picking up my mail in the lobby on the way upstairs and opening a letter from an old acquaintance. I read something that set me off in waves of anger.
That night in bed, I tossed and turned, infuriated. Nat, all of this sitting and look at you. Stop. But I couldn’t.
Then, right in the middle of this struggle with anger, I fell below all the turmoil into a place of complete peace and open space. All of my muscles relaxed.
This state continued through the night, and the whole last day of practice, until we bowed out in late evening.
During that afternoon I had a formal one-to-one meeting with the teacher and told him what happened. “That peace is available all the time,” he said.
“But how did I get there? It was like I fell through a hole.” I felt buoyant, underwater.
He shrugged his shoulders. “Sometimes when you struggle like that, something comes up to meet you.”
Something similar happened to me that night in bed in Santa Fe, but this time I understood it. Underneath everything, I was struggling to survive, to stay alive. I simply let go, simply stopped struggling. Whatever was in the bone marrow, it was already there in my body. Nothing I could do but let the drama unfold.
* * *
—
On Friday, when the call did not come, I was relieved. I could relax through the weekend. Enjoy this time, I repeated to myself. The song we learned in high school French class, which turned out to be an American song written for Doris Day, “Que Sera Sera,” whatever will be, will be, whirled in my head.
On Monday morning at ten, Dulcinea called. To my great surprise — I’d already let the worst happen — the marrow showed it was still CLL. “Start the ibrutinib pills.”
“They still haven’t come,” I said.
The next day they arrived via Fed Ex. I signed for them, and the red-haired woman standing at my front door handed over a small white box. Inside was a square white plastic bottle with a white label and black typed letters: NATALIE GOLDBERG. This was my drug, my medicine. 140 mg. Take three capsules orally once a day. Prescriber: D. Aragon.
I kept reading. Caution: Federal law prohibits the transfer of this drug to any person other than the person for whom it was prescribed. I liked the for whom. Someone knew their grammar. But who else would want this? It meant you had cancer. I couldn’t give the pills away if I wanted to. And, oh, how badly I wanted to give away the whole catastrophe.
You’d think I’d tear the silver seal off under the cap and pop three in my mouth. I didn’t. Instead I peered in. White, big capsules with ibr in lowercase printed on each one.
I felt as though I were handling dynamite. Would they work?
I replaced the cap and put the bottle in a kitchen drawer alongside a measuring tape, two candles, a bunch of cards held in a rubber band, three keys, a pile of paper receipts, paper clips, and three unsharpened pencils.
And then I shut the drawer.
Two hours later Yu-kwan came over. “Let me see them.” I pointed across the room. “Come with me.” She took my hand. I opened the drawer and we peered in together. “Why don’t you take the three now?”
I shook my head no. I just couldn’t. At least, not yet.
15.
WENDY ARRIVED from California for the second time during my illness. The next day, November 12, she accompanied me to Dulcinea’s office in Albuquerque.
I brought a gift for Dulcinea’s two-year-old — orange paper butterflies that a student in Ann Arbor had sent me. They were so beautiful that I was never able to bring myself to open them before. Across the chasm of new patient and her doctor, from aging New York Jew to Catholic Albuquerque homegirl thirty years younger, I was trying to make a connection.
I imagined Dulcinea’s life: sunk in studies for years, living close to her parents and then, after marriage, also close to her husband’s family. She’d shown me photos of her daughter. I leaned over the pictures and admired the small girl wearing glasses, standing tall, her two feet almost together.
I envisioned the pull and delight of being with a young daughter versus the dedication and difficulty of her hard-won profession. The impossibility and hope of saving lives, the victories and defeats. The raw meeting of a patient’s fear and need in those small rooms — and, often, the inability to help.
I told Dulcinea all of my reservations about taking ibrutinib. The worst was that, if it didn’t work, we wouldn’t know for at least three months — and during that time the cancer would keep growing undercover. We discussed the possible side effects: nausea, constipation, diarrhea, muscle aches, and more. In addition, rather than being administered directly into my blood, ibrutinib would run through my digestive system. Mine wasn’t so great to begin with. Would it burn out my liver, stomach, intestines?
She heard me out and in the end encouraged me to try the drug anyway. She told me about a patient of hers — a large man, bulked out with tumors. After three months of this drug the results were miraculous, the tumors all gone. “No guarantees, but let’s give it a try. Do you have the capsules with you?”
“Yes. In the car.” I promised to take them as soon as we left.
With something you want badly, right before you are about to experience it, there is hesitation, resistance. That’s what I felt. The vast unknown offered itself to me — and I was afraid.
Wendy and I dropped in the elevator like a dash in a forgotten sentence, down from the third floor to the ground level. Out the automatic sliding doors into the immense parking lot. It was six minutes till noon. I needed to take the capsules the same time each day. Noon seemed possible. If there was a reaction, it wouldn’t keep me up all night, and I wouldn’t have to face it first thing in the morning.
Get those things in me and get them working.
But I had to have some ceremony. We walked to my car. At the parking divide was a patch of grass and a spindly tree with no leaves. This spot would have to do.
I knelt down, the three white capsules in my left palm and a water bottle nearby.
First, I spoke to the CLL: “You and I have lived together for a long time.”
Wendy whispered, “Twenty-five years.”
“It’s been long enough. You have to go.” The cancer had begun so far back, a silent companion when my beloved teacher died and snaking through the years since. Always with me. Who else can I say that about?
I shook my head and said aloud, “Nat, no more sentiment. Do what you need to.”
And then I addressed the ibrutinib, holding up my hand: “Please help me. Do the work you were created for.”
I popped those three shiny capsules in my mouth, gulped down water, pressed my lips together, and nodded at Wendy. “Let’s go.” We got back on I-25 and drove the sixty miles north.
As we drove I looked out the window and asked myself, Will I cross this street again, see the slant of shadow on this adobe wall, feel the nebulous quality of November — not the beauty of October or the heavy anticipation of December — but Nov
ember — one more time? Right then November was the scale for me between life and death.
I hoped the weight would shift, the balance in my favor once again.
CLOSER TO DEATH
On November 19, five days after I ingest my first ibrutinib, I find out that Rima Miller, a woman I knew slightly and who had CLL like me, recently died of complications from the disease. She too had been taking Oh Fat, but after only two infusions she had to quit and needed blood transfusions. On her fifty-ninth birthday she was admitted into Christus St. Vincent Regional Cancer Center’s intensive care unit. She never came out alive.
Every person’s cancer is different, even if you call it by the same name. Yet Rima’s death felt close. A blanket of grief fell over me, my home, the whole street I lived on.
I didn’t feel well enough to go to Rima’s funeral. But I was told that the synagogue was filled with hundreds of people.
Yu-kwan and I do go to a small ceremony a week later, out at Rima’s house, south of town on a mesa with wide-open vistas. She had requested that her body be left on top of Mount Baldy, a high mountain that can be seen from town, especially when covered by snow. She wanted to be feed for wild animals, but that wasn’t legal. Instead she was buried in her backyard in a coffin made of reeds, like a big basket. Her grave was dug six feet deep in hard earth during many hours and through the night by her boyfriend. Now it is a big mound covered with crystals, kachinas, colored scarves, an apple, a theater mask, glass beads, and poems friends have left. Over the belly of the grave is a large Middle Eastern rug. At intervals people, unplanned, leave the house and follow the path to where she is lying.
Let the Whole Thundering World Come Home Page 9
