Wondering Who You Are: An Excerpt

Sonya Lea



The night before my husband’s cancer surgery, I stay up to watch him sleep. In the featureless hotel room, I think of our first meeting, our college breakup, our marriage, our honeymoon, our reunions, our children’s births. We have been married for twenty-three years. I have been a child and a woman with this man. To imagine his death is to imagine the end of myself: I cannot know this loss. Instead, I will us to live with a kind of fierce presence I’ve never before achieved. I watch. I wait. I witness.

By 5:00 AM, he’s signing paperwork and I’m sipping stale coffee in the hospital lobby. Every room has a television. Every television resounds with a cheery morning news show. He’s moved to pre-op. He goes in to change into his hospital gown. Soon, a nurse calls my name and hands me a large white plastic bag marked PERSONAL BELONGINGS. The bag is heavy with his size 13 running shoes and tall-legged Levi’s jeans and wallet stuffed with discount cards. I don’t want to be left holding this dismal bag in the fluorescent waiting room with the televisions blaring Montel Williams and Judge Judy in a bizarre symphony while I clasp the last of his scent.

A few minutes later, I’m called to the curtained space where Richard is being prepared for surgery. His body spills over the sides of the gurney. We’ve waited forty-six days for this moment, assessing every medical paper, learning all we could from others with the same horrific rare disease.

I think of where Richard might go in the time his body is open to the doctors and nurses doing their work. I hope he’ll be in a dream, like the ones he has about running and flying and climbing, and not like the ones I have, which are about the end of the world.

His long, summer-tanned legs stretch from beneath a mint-green gown. A drip is flowing into his arm. He’s suddenly scared. I stare straight into his eyes. Steady, smiling, subdued.

“You’re going to be okay,” I lie.

“You need to say good-bye,” says the nurse.

I kiss him like we aren’t being watched.

A tear descends across his cheekbone.

I walk back to the surgical waiting room and nod to my sister, who has come to be with us for the first week. Christie is a nurse; she’s Grace Kelly on the outside and the warrior Boudica on the inside. You want her on your side in a crisis. We’ve already talked about this moment. There’s nothing left to do but pray and meditate in silence while we wait for the surgery to end some ten hours from now, if everything goes as planned.

The deadly and rare cancer afflicting my husband is pseudomyxoma peritonei (PMP), pseudo for the way the mucus that surrounds the organs may resemble a tumor mass. The disease has few signs or symptoms. It develops when a polyp originating in the appendix bursts and spreads mucus-producing tumor cells throughout the abdominal cavity. The cancer can range in malignancy, though every kind of PMP is deadly. Gelatin-like mucin is produced in the abdominal cavity in such large quantities that it squeezes the life out of the vital organs. They call this cancer “jelly-belly.” We were not fooled by the cute name. The mucus—gelatinous ascites—that stuck to Richard’s insides caused more than a midlife paunch.

PMP is fatal. To watch someone die from this disease is to witness the body starving itself to death. The mucus restricts the intestinal tract, and the tumor absorbs the body’s nutrients, then finally results in bowel obstruction and wasting syndrome. This is Richard’s second, and potentially more lethal, surgery.

Richard has chosen an experimental and controversial treatment called cytoreduction with hyperthermic intraperitoneal chemotherapy (HIPEC). During this procedure, surgeons will cut his torso from pelvis to xiphoid, take his navel, and possibly resect or remove his bowels, gallbladder, omentum, spleen, peritoneum, and parts of his pancreas, stomach, and liver. After the cancer has been scraped from his innards, the surgeons will pour toxic chemicals heated to 107 degrees into his body cavity. The aim of pouring the hot chemical solution is to kill off any remaining cancer cells, with minimal exposure to the rest of his body. The ten-hour surgery will be followed by five days of additional heated chemotherapy, in which chemicals will be poured into his abdomen to soak the solution through his insides. Survivors call the treatment MOAS, for Mother of All Surgeries. At the time of Richard’s operation, there’s a five-year survival rate of 53 percent, provided he lives through the surgery. We’ve read online and in journals that 5 percent of people who opt for this treatment do not survive the procedure.

In the waiting room, there’s no space to sit where I’m not assaulted by television noise. I walk into the hall and sit on the floor. Earphones go on my head, and when I press the button on my Walkman, Tibetan monks chant healing tones. I sit like this for hours. The monks’ rumbling throat-notes make a fearless zone in my body. Overtone songs compose me; I’m motionless and undisturbed. What returns is the Zen practice that stilled me when I was a young mum and learning to meditate.

I imagine my husband ascending from his body. I imagine him rising from the gurney and floating, high in the sky, toward the mountains, our beloved sawtooth peaks in the Canadian Rockies, which we hiked that August, one month before the surgery. This was a medicine walk, where you go out into the wild holding a question about your life. I want to see Richard as I did that day, in the dark tent the morning we started on our silent walk. He smiled as he tied a purple bandana around his long wavy hair. In that time of preparation, our teenage children, Joshua and Dylan, and I were holding the same question: How do we help him live?

But I can’t forget that when we began our vacation in the Canadian Rockies all the national parks were burning: smoke covered Banff, Jasper, Kootenay, Yoho, and Kananaskis. Our campsite reservation had been canceled. On the drive north from our home in Seattle we were diverted twice when fires jumped highways. The air was hot and smelled of soot. We snaked slowly along roads, watching for fleeing deer, elk, sheep. We followed the smoke toward the park or perhaps the smoke led us on. We arrived with our throats sore from breathing ash, our eyes red, and we stood looking over the Bow Valley, the brilliant russet sunset the unlikely gift of the blaze. We unpacked water, sweaters, rain gear, footwear. We pulled out our field guides from the years we had spent living in the Rockies, found the names of old friends: larkspur, glacier lily, red elderberry, prickly rose. And yet, something was going awry. Ranger-planned forest fires had bolted their barriers. We finally found shelter on the Icefields Parkway, in the Mistaya Valley with its protected Waterfowl Lakes, blue spruce, and moose. We placed cash in an envelope, stuffed it in the self-reservation box, and began setting up camp. No incursion of smoke was going to deter me from this quest. That last summer together, I wanted to prepare for this taking apart of my husband’s body.

All that time in the forest and still, in the hospital, I don’t know how to be without him. I have rarely lived alone. All those days I watched the land burning in the distance and sensed the oncoming danger, my throat tightening, and still I don’t know what to do. All those nights spent listening to the silence as the fire lit the sunset, and still I do not really know what I like, who I am. With him alive, I’ve never risked the discovery.

That afternoon, Christie comes to take me for lunch. In the hallway we meet the CEO of Richard’s physical therapy company, an organization he’s worked with for twelve years. Richard is one of their best therapists, a managing director who heals patients in his own clinic while supervising twenty other centers. The smooth-suited man has an earpiece attached to his head, a strong handshake, and a confident smile. He tells us he’s been at a meeting on the East Coast, and that he wants to be here for Richard when he gets out of surgery. I thank him for the Bible he sent us last week. (When people asked us what they could do to help, we said send us books you’ve loved so we can read them to each other while he’s in recovery. We have a suitcase full. We will not read one book.) When the CEO hears that our budget doesn’t include our children traveling to the hospital, he offers to fly them in to see their father. It’s the only time I cry all day.

We keep checking in at the nurses’ station, but no one knows anything. Finally, a nurse comes to tell us everything is proceeding as it should. My sister tells me to get some rest, and because it’s been thirty-two hours since I’ve slept, I let her walk me to our room in the hotel next door. By the time I lie across the bed, the phone rings and it’s the CEO.

“Dr. M is out. I’ve spoken with him,” he says.

We return to the surgical waiting room. The CEO tells me the update the surgeon has given him just minutes earlier: Richard is stable. There are a few more hours to go. I’m so relieved I don’t even care that the doctor has broken patient confidentiality. We wait. Christie makes me eat. An exhaustion sets in that even strong coffee can’t overcome. I feel as if I’m walking in a dream, as if I’m suspended between Richard’s forced sleep and my own state of high alert.

By late afternoon, Dr. M emerges from the operating theater and escorts us to a tiny closet of a meeting room. Christie and I sit on cold folding chairs and listen to a report about the operation. I hand her my red, sequined journal and she bows her head, taking notes. She writes in the language of medicine. My sister-the-nurse knows her sister-the-writer remembers words that appear on paper.

“We had to take his spleen and part of his colon,” Dr. M says. “No bag,” he adds, after registering my face. “We hope the resection knits itself so we don’t have to take more.”

“His stomach?” I ask.


His stomach had been surrounded by the mucus deposits, and I worried that Richard would lose one of the greatest sensual pleasures of his life, eating wonderful food.

“We had to take a lot of mucus from the pelvic region,” Dr. M says.

Christie looks at my face to make sure I’ve heard his words, and when I gaze back at her eyes she looks down.

Pelvic region, she writes, and then she makes an arrow pointing up. Code. For Hellacancer. Whole colonies of gelatinous ascites, gobs of abdominal mucins. Richard has either the hellacious, rapidly dividing peritoneal mucinous carcinomatosis (PMCA) or the milder form of cancer, disseminated peritoneal adenomucinosis (DPAM)—we won’t know until the lab results come back.

While I’m watching the surgeon’s eyes, in walks the CEO of Richard’s company. I’m shocked, both at the surgeon’s statement and at the intrusion of the man from another domain into the private world of medicine.

I can no longer stop anything from happening.

I lean toward the doctor. I hope that my body is blocking the CEO from hearing our words, that the surgeon won’t notice I’m staring at the blood on his pants. I will myself to remember the words that are spoken.

“Yes, we knew there might be a lot in that, uh, region,” I say to the room.

I want to say, Fuck you, cancer, for ruining twenty years of rollicking fucking. I want to call cancer a curse, a rat, a vampire, a fiend, an avalanche. But I don’t say anything out loud. I sit there like the nice girl, the good wife, the woman who can cope without decent sex.

“We won’t know about functionality for some time,” Dr. M says.

I shake his hand. My man is cancer-free. “Thank you, thank you, thank you,” I say.

By twilight, an hour after the surgery, I’m holding Richard’s hand in the wagon-wheel-shaped ICU. Christie is calling our friends and family from the waiting room down the hall. Only one of us can be in the room at a time. I wish I had my sister near to help interpret what I see.

A round clock on the wall above Richard’s feet marks the minutes. He has thirteen tubes in his body. By seven o’clock, he opens his eyes. He locates me. Then he returns to sleep. By 7:20, his blood pressure is unstable, and the nurse hangs a norepinephrine drip to help his blood coagulate. Sixty minutes later, Richard’s blood pressure stabilizes. I breathe more easily. This is typical, I think. The body settling after its strenuous ordeal.

The nurses change shifts. The new nurse examines him, and then organizes the multitude of wires that lead from the machines reading his body to the computer box sounding alarms. She focuses on the technology and not on my husband’s body, and I keep asking her questions; I want to direct her attention back to him. Minute by minute, I watch as his blood pressure rises and falls. By the time the minute hand has circled the dial, his heart rate has passed 100, 105, 111.

“This isn’t what he’s like,” I say. I mean to tell her that Richard is a fit man; his resting heart rate is 54. Because he hiked and ran and skied and played tennis and basketball, his heart rate has remained in a fit zone for decades. I can’t get the words out. “This isn’t right,” I keep saying.

He moans. His skin is dank, cool. His face is flushed.

By nine o’clock, Richard’s blood pressure is fluctuating wildly—systolic in the 80s and diastolic in the 40s. Monitors beep exclamations. The nurse checks the response of his pupils.

“What’s happening?” I ask.

“The blood has been ordered, but it’s slow to come from the lab,” the nurse says.

“He’s losing blood?” I ask.

“They won’t release the blood. I think they’re going on a false reading.”

I want to run to get my sister from the waiting room, but I can’t risk leaving Richard and not being able to get back into the ICU.

“What’s happening?” I ask again.

“I’m giving him more fluid, to stabilize him.”

“When was the blood ordered?”

“Hours ago. The hematocrit reading he had right out of surgery was thirty-nine.”

I’m confused. “What’s hematocrit?”

“That’s really good,” the nurse says. “Hematocrit is the concentration of red blood cells. It’s normally about forty-five percent. Because the reading was in the healthy range, the lab won’t release a further transfusion.”

“We have to compete for the blood? Where’s Dr. M?” I ask.

“He’s gone home. Richard is going to be fine. As soon as we stabilize him.”

The monitors blare their denial. His heart rate races to 122, the number lit in the acrid color one sees only in technology. The nurse raises the sheets and we both see that the drains coming from his body are filled with blood. There’s no way this much blood should be leaving his body. The nurse looks agitated.

“When is the blood going to be here?” I can’t tell if I am polite or yelling.

“We had a doctor on staff order the plasma. It’s on its way.”

Richard’s body lurches on the bed. His head moves from side to side. I hold his boxing glove of a hand. His fingers have always been thick, three times the size of mine, yet now his grip is weak, swollen, sweaty. The weight of these hands has offered me such reassurance. I know their density and history. I know how his life shaped these hands.

Sonya Lea’s essays and interviews have appeared in Salon, the Southern Review, Brevity, Cold Mountain Review, Tricycle, the Prentice Hall College Reader, and the Seattle Post-Intelligencer, and excerpts from Wondering Who You Are have received an Artist Trust Award. Lea teaches writing at Hugo House in Seattle, and she’s leading a pilot project to teach writing to women veterans through Tom Skerrit’s Red Badge Project. She recently directed her first short film, Every Beautiful Thing, which will play in festivals in spring 2015. Originally from Kentucky, she currently lives in Seattle, Washington.