It is strange to move from that twilight world back into the world of the young and healthy and living. One day that week, I left the hospital early and drove out to a beautiful cool-water spring in the Hill Country with the man I had started dating. We lay in the sun in our swimsuits on a limestone rock, and when we swam, the cool water ran over our arms and legs. We rose easily and walked down a path through the cypress and pin oaks, and we kissed on a rock that was scattered with flowers. Fireflies flashed over the water, and like my patients, I wanted desperately to be in this world. His heart beat fast against me when we kissed, and when I touched him I felt like I was flinging myself toward life, life, any kind of life.
I WAS ASLEEP WHEN MY PHONE RANG at three in the morning the following week. It was Dr. Ijimo. “Well, Rachel, I guess you ought to come on down here, because we have an emergency craniotomy to do.” I rolled out of bed, shrugged on my scrubs in the darkness of my bedroom, and drove to the hospital. The parking garage was empty enough for me to get a spot on the first floor, so I hustled into the bright-lit nighttime hospital and straight to the operating suite.
By the time I was scrubbed, Dr. Ijimo had already opened the patient’s skull and was preparing to maneuver his instruments down through the brain. The patient was covered by a light blue surgical drape so all we could see was the top of his head, but I remembered the pattern of fresh cuts I saw along this skull. It was Elias.
We sucked out another bleeding tumor, and as we were closing up I turned to Dr. Ijimo.
“He consented to this?” I asked.
“Well, this time he was unconscious,” the doctor said. “His parents consented for him.”
I just stayed in the hospital after that surgery. It was almost time for rounds, and there was no point trying to get any more sleep. I went to the hospital cafeteria for coffee, and took it out to the crappy meditation garden next to the back parking lot. It was five a.m., and I could hear the garbage trucks unloading Dumpsters beyond the garden fence. I thought of calling somebody, but it was too early—nobody would be awake. So I sat by myself and waited for this bad night to roll over into day.
Elias had survived the surgery and was in the recovery room. He would go from there to the ICU, and in the afternoon we would check on him. I was already dreading it.
ELIAS DID EVENTUALLY LEAVE our hospital alive.
I saw him there again six months later; I was on the internal medicine team, and he had come in with his lungs full of blood. I could not believe he was still alive. He was still able to raise one finger, and he communicated like that, though mostly his parents were calling the shots. It was never clear exactly how much Elias understood.
I ran into the nurse practitioner from neurosurgery in the hall. “Did you see Elias?” she asked.
“Yeah,” I said. “I can’t believe it.”
“I’m so sorry,” she said. “I feel so awful about this, but he needs to die.”
“I know,” I said.
“They need to let him die. He must be doing it for them. He wants to protect them, he doesn’t want to let them down, so he won’t stop.”
“It’s awful,” I said.
“Everybody feels awful,” she said.
If Elias had been a few years younger, the situation would have been different. A provision of the Affordable Care Act makes hospice and palliative care available to children even when they and their families want to continue potentially curative treatment. When the hospice team comes on board, they bring doctors and nurses who are experts not only in treating pain and other symptoms from life-threatening diseases but also in talking about death and dying. The hospice team could have prepared Elias and his family, in the most compassionate way possible, to face the situation. All doctors should be able to do this, frankly, but somehow communication had broken down in Elias’s case.
But because Elias was over eighteen, getting hospice care at the same time as curative therapy was not an option for him. Hospice couldn’t come on board until he and his family were ready to stop trying for a cure. We on the medical team knew pretty darn well—though nobody ever knows for sure—that a cure was not forthcoming. But his family wanted us to be heroes, and we tried too long to play that role.
It was easier for us at that time to put the blame on his parents for clinging to his life. But the fact is, we kept on doing the surgeries, even though we knew each one would leave him more devastated. His parents chose to continue, and so we picked up our knives and continued. At a certain point, we could have refused.
But the fact is, Elias did get a few more months of life. Maybe he relaxed when his mother touched his cheek. Maybe his pain was well controlled. And maybe he saw fireflies. I don’t know what it’s like to be that young and to be dying, but I do know that life can be very beautiful. And I understood, that year, why Elias and his family clung to it.
CHAPTER 17
I DO NOT LIKE TO USE THE BATTLE METAPHOR FOR CANCER, but in my grandmother Olive’s case there can be no other: she was a soldier’s wife and, in her own way, she fought. She had gone to college and gotten her teacher’s certification in her forties, just years before she was diagnosed with breast cancer. Her teaching career was precious to her: it was all her own. In all those years I knew her, when she was on and off chemotherapy, she continued teaching. She taught reading to public-school children with special needs. When the Corpus Christi Independent School District wanted to recognize her for being their oldest teacher, she refused to accept the award: “I don’t want people to know how old I am,” she said, patting her thin gray curls. “That’s nobody’s business.” When MD Anderson in Houston refused to give her targeted radiation for her bone metastases, she started flying up to Washington for the treatments. When she woke up one morning and all of her toenails had fallen out from the effects of chemo, she put on her socks and shoes and went to school.
Olive could be terrifying to children. She claimed that my brother and I read too much and were ruining our vision, so we would flee to a brown corduroy chair on the upstairs landing of her house and read away the afternoons of our Corpus Christi family vacations, safely hidden. Olive wasn’t much for negotiating the stairs. She would rule the house from her own recliner, delivering scathing commentary on Olympic ice dancing or on the many failures of her five children’s husbands and wives. Her own husband—my grandfather Charles—took to the kitchen in his old age, cranking out beautiful pie at the holidays and gently spoiling my brother and me. He was the one with the wonderful stories of his years as a ranger in the National Parks Service. He had ranged over Yellowstone, the Smoky Mountains, and Grand Canyon National Park, keeping Olive and the kids in Park Service housing (much to Olive’s disdain). In the years before, while he was a soldier stationed in Ethiopia, Spain, and Germany, they never lived on an Army base. Olive wanted to live in the cities; she wanted to be far from the kind of people she was raised among on a farm in Gonzales, Texas. She dressed beautifully, hoarding gowns and shoes and fancy purses that she bought at deep, deep discount. My grandfather, for his part, never told me stories about his years before the Parks Service. He had enlisted as a Marine at the outset of World War II, when country kids were in high demand as infantrymen because they already knew how to shoot. He fought in the Pacific, and was involved in the storming of numerous islands.
Grandpa mustered out of the Marines after the war ended, and worked odd jobs and studied dentistry before signing up again as an Army man. He was sent to officer school, and eventually retired as a major. Then he finished college and got his Parks Service job. Those were the stories he told me. Like how one day when they were living in Grand Canyon National Park the family woke up to find my seven-year-old uncle missing. The boy spent that day hiking all the way to the bottom of the canyon and back in slippers and a bathrobe. “I bet you could do that, too,” my grandpa told me.
Olive could terrify a shopkeeper as well as a child. One summer when my brother was five, Olive was watching my mother fold up a pair of his und
erwear that had a hole worn in it.
“Where did you get those underwear?” she snapped.
“Sears,” my mother said.
“Sears?” Olive asked, a glint coming into her eye. “Get in the car, Reta. We’re taking them back.”
“But I bought them a year ago, and I don’t have a receipt,” my mother said. “They’re just worn out.”
Olive had sniffed out a battle, though, and would not be swayed. “Those underwear are faulty,” she said firmly. “We are taking them back.”
“Yes, ma’am,” my mother said.
So Olive drove my mother out to the Sears in Corpus Christi, where she proceeded to present the worn-out underwear to the poor gal at the service desk. “These underwear are faulty,” she explained gently. “They have a hole.” Olive got the underwear replaced, in the larger size that my brother now needed.
After my grandfather was diagnosed with Alzheimer’s, my mother would send me out to the breezeway to listen to his stories as he smoked his pipe. So together we would pass the long afternoons, tending quietly to the rosebushes that he cultivated in the sandy soil. I loved these afternoons; I didn’t realize until long after that we were probably both hiding from Olive.
TOP-NOTCH CANCER TREATMENT kept Olive going for a long time, but it could not make her live forever. When the cancer finally overcame her, she wanted no tranquilizers. She wanted to be as lucid as possible, in total control of the family until her final moments. When she could no longer take food or breathe on her own, she wanted to be kept alive by machines for as long as possible.
But we refused.
I don’t know if this was wrong or right, but after so many years, the family could not take any more protraction of our matriarch’s death. We kept her at home, where she was in turns gentle and vicious. She would quietly thank me for sitting at her bedside and reading aloud to her from Reader’s Digest or the National Enquirer, then lay into my father and his brothers and the ghost of my grandfather, all of whom she blamed for penning her up, stealing her freedom, tying her to home.
“I could have been anyone,” she said. “I was beautiful. Why did I have to marry that stupid Army man? There were dozens of men courting me.” Then she would lie back on her pillow, waiting for me to offer her another sip of water.
“She forgets,” my mother comforted me later. “She forgets how much she loved him; she forgets that if she hadn’t married him, she wouldn’t have you.”
But Olive actually never forgot. She was lucid the whole time, and fought until she died. It was terrifying to see someone die who was so very lucid, so angry, and who refused to accept that she was dying. No, she seemed to say, this wasn’t it. This wasn’t what I wanted at all. Not the five children, not the life abroad and in gorgeous national parks, not the hundred pairs of shoes that she left in boxes in her house, which nobody could bear to clean out for nearly a year after her death, so they remained like a monument to her. Not the quiet granddaughter by her side, reading. Not this, and certainly not death. I refuse!
When she could no longer fight death, she fought us, the living symbols of everything that now seemed empty about the whole business of being human, and particularly of being a woman. She became an ungrateful mother, tethered to the bed of her suffering by pain she could no longer escape.
My father came home from tending to her one evening, and in his grief and his exhaustion he said, “If she could suck years out of my life so that she could live a little longer, I know she would.” He was the eldest son.
“Oh Chuckie, no, no,” my mother said, moving toward him. But I think she knew it was true.
IN MY OWN HOUSE TODAY, there are things that were Olive’s. There is a brown leather footstool from Ethiopia, two fancy dresses, a pair of expensive sandals I wear in the summertime, and that old corduroy chair from her upstairs landing. It’s still a great reading chair, and when I snuggle down into it these days I feel as safe as I did when I was a child—no longer safe from Olive, but safe near her. Or near enough, with the protective distance of mortality.
My brother planned to name his boat after her. Boats all have names, and so he knew when he bought a used boat that he would have to change the name. But changing a boat’s name is bad luck, and like most sailors, Matt is loath to invite bad luck. To change the name to Olive Belle—including her middle name there—he would first have to find a maiden to pee on the deck. That’s how, apparently, you cast away the bad luck.
We joked about how it would be hard to find a maiden in Southeast Alaska, and how we might have had to send up one of our baby cousins. Matt would shake his head and say, “Aw, I’ve got buddies who have kids. I bet one of ’em has a daughter.” Dad suggested a Craigslist ad: Looking for virgin to pee on boat. But Matt figured that would get him arrested, or at least investigated.
When Matt finally did find his boat, the name it already had was glorious: the Viking Rover. So he kept that name, and I—imagining storms, anger, the fierce rage of a woman dying—was relieved. Olive can be a great protective spirit, but you never know when she might turn.
CHAPTER 18
IN THE SPRINGTIME OF MY THIRD YEAR OF MEDICAL school, I did a three-month rotation in internal medicine. For the final month, I was sent out to work in a private practice office in a wealthy Austin neighborhood. I arrived early Monday morning and introduced myself to the receptionist, who called back to Sara, the medical assistant, who led me through the clinic door into the back and showed me around while we waited for Doctor Houston. There were two doctors in this practice, so there were two sets of examination rooms, plus a procedure room where, as Sara explained, “they do all the laser hair removal.”
“They do laser hair removal?” I asked.
“Yeah!” Sara said. “Doctor Houston does. And you can actually get an employee discount if you want to get it done here. I got a full Brazilian, and it’s great.”
“A full Brazilian?” I asked.
“Yeah!” Sara said. “But you can get whatever. Just the sides, or a little strip. You know.”
“Oh cool,” I said. I was not accustomed to discussing my pubic hair before eight a.m. in a professional setting. “Um, I think it might be kind of weird for that to be done by someone I work with, though.”
“Oh, he’s totally professional. He does it all the time,” Sara said. “Here’s a pamphlet.”
I took the pamphlet and we moved on, past a suite of chairs designed for people to get electrode treatment for diabetic foot pain, past another set of exam rooms, and out toward the bathroom. In the hallway to the bathroom, there was a display case showing the high-protein diet regimen for sale through the office—you could have snacks and meals on this special diet delivered to your home.
“Dr. Houston actually did this diet himself,” Sara whispered to me. “He lost fifty pounds. He looks great.”
“Oh, great,” I said.
We headed back down the hallway. “So what’s up with the electrode chairs?” I asked.
“Oh, it’s so awesome,” Sara said. “You know how people with diabetes get all that pain in their feet? Well, we’re the only clinic in the area where they can get this electrode treatment. Our patients love it. Dr. Houston tries to make it like a spa for them, because they have to come in three times a week for the treatments for six weeks. Some of them put cucumber slices over their eyes.”
“Cool,” I said. “Is that on insurance?” I asked, wondering who could afford to pay for eighteen treatments out of pocket.
“Oh, no,” Sara said. “It hasn’t been approved by the FDA yet. But Dr. Houston says it definitely will be.”
As we passed back toward the exam rooms, sure enough, an older lady was relaxing in one of the chairs with her cane leaned up against the side and cucumber slices over her eyes.
“That’s Mrs. Vandeem,” Sara whispered. “She’s a hoot.”
Private practice was indeed different from training in a public hospital, but not for the reasons I expected. The patients mostly had wha
t we call “bread and butter” medical issues: high blood pressure, low thyroid, flu. We saw some more complicated patients, and some cancer survivors, but it was a profound relief to practice in a space where everyone was well tended. Not only did they have full access to care but they also had every other social advantage that leads to health: money, fresh food, clean safe neighborhoods with space to exercise, job security. We could offer them the best medical care, and trust that they’d be able to do the rest. I loved the work. It was deeply satisfying to be able to use my training to help people; it was so clear.
Dr. Houston was great, too—the kind of smart, warm, no-nonsense doctor I’d like to have for myself. He would send me in to see the patients on my own, for a history and physical exam. Then I would report to him, and we’d go confer with the patient.
On my second morning in the clinic, I walked in to see a woman in her fifties with hypothyroidism. She looked up brightly as I walked in the door, but then her face darkened.
“Hi, I’m Rachel,” I said, reaching out to shake her hand.
She did not extend a hand. “Who are you?” she asked.
“I’m the third-year medical student working with Dr. Houston. I’ll just get started with you and then he’ll join us.”
“Do you have to?” she asked, frowning.
“Oh,” I said. “No. If you don’t want to see a student, you definitely don’t have to.”
“I’d rather not,” she said.
“That’s fine,” I said. “I’ll let Dr. Houston know you’re waiting.”
“Okay,” she said.
I backed out of the room and closed the door behind me. I felt strangely ashamed, having intruded briefly into this woman’s life and been repelled. In the three years I had been seeing patients, none had ever refused to see me.
This would happen almost every day in Dr. Houston’s practice, and it never failed to make me feel bad. Of course, I know that patients have no obligation to see students, and I don’t really want to see patients who don’t want me there. But these patients, who had so much more protection than my St. Vincent’s patients, and were so much healthier, were unlikely to be harmed by me. Why were they the ones who refused?
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