No Apparent Distress

by Rachel Pearson

  But it was when she was fully insured that the real excess began. The first experimental treatment would have cost twenty thousand dollars a month without their insurance. The second would have been even more. At that time, we didn’t even tell St. Vincent’s patients about treatment for hep C. There was no way they could afford it. And that was sad, but some part of me also breathed a sigh of relief that they would be spared it.

  And so when I saw the insured patients at Dr. Houston’s office getting a little bit of “extra” medicine, it didn’t feel benign to me. Everything that had happened to my mother felt so unnecessary: the transfusion, the failed treatments, the pacemaker, the fear of death that had fallen over everyone in our family and which we could not shake. Medicine had caused this.

  LAST YEAR, WHEN MY MOTHER AND FATHER were camping in Idaho, my father got the idea that they should go to the Mayo Clinic. He sort of begged my mother to go. “What if something has changed?” he said. “Maybe there’s something new.”

  My mother was no longer eager to try anything new. She no longer believed that it was good to be at the forefront of medicine, with access to the newest and best drugs. But she consented to call Mayo, mostly because she figured she wouldn’t get an appointment anyway.

  Yet she did, just a week later. And so my parents, the carpenter and the retired high school teacher, walked into the cathedral-like entryway of the most elite hall of American medicine, that top-level clinic that caters to the wealthy of the United Arab Emirates but does not accept poor patients with Medicaid. Finally, they had the kind of lives deemed worthy of care at the pinnacle of American medicine. A pianist was playing in the foyer.

  The first day there, my mother had blood tests and underwent a new kind of liver ultrasound. Her appointment with the gastroenterologist was on day two. When he walked in, he was smiling.

  “Well, good news,” he said. “You don’t have hepatitis.”

  “Yes I do,” my mother said.

  “Nope,” he said. “You don’t.”

  “I am sure that I do,” my mother said.

  “Nope,” he said.

  “What?” my father said.

  The latest round of blood tests had shown that there was no detectable virus in her blood. The doctors couldn’t explain—and they still can’t—why it showed up right after her treatment and then disappeared.

  And there was a final irony: the doctors at Mayo said that they would not have treated her. Even given the limited knowledge back in 2000, the best evidence suggested that my mother would never have been harmed by the virus. They would have just reassured her, and sent her out to live her life with occasional blood tests and liver ultrasounds.

  So the virus is gone, and the whole ordeal was probably unnecessary. Unnecessary medicine stopped my mother’s heart.

  The rest of my family has taken her cure as a miracle, but I remain suspicious. I badger my mom about her follow-up tests, even though she’s been disease-free for a year. She walks freely on the beach now, does water aerobics, hikes through the mountains with my dad. When we talk on the phone, she eventually starts identifying birds that she sees in the yard around her, and at that point I know it’s time to hang up. All this is indeed like a miracle, when I remember her thirty blood transfusions and her years of illness, when I remember my patient dying of liver failure, and how desperately I wanted Mom to be free from that. My mother laughs again, and I hope that she and my father are recovering the kind of peaceful love they had before all this fear entered their lives.

  * Hepatitis C is not spread in breast milk, but breast-feeding moms with the virus have to be careful about dry or cracked nipples, which can bleed.

  CHAPTER 19

  I RETURNED TO GALVESTON AS PLANNED IN AUGUST, after finishing my third year of medical school. I began taking courses at the Institute for the Medical Humanities again, and was made a junior director at St. Vincent’s. I would become a full director in April, and serve in that position for a year before returning to just being a regular volunteer.

  As a junior director, I started working on patient assistance—coordinating our patients’ applications to pharmaceutical companies for free or reduced-price medications. Vanessa was one of the patients I was working with.

  I first contacted Vanessa on the phone, to let her know that we needed a copy of her driver’s license to send along with a patient assistance renewal request. The medication she needed was a controlled substance—Xanax—that we did not routinely prescribe at St. Vincent’s. So, I hadn’t known that it would require proof of ID. Vanessa was on her way home from the clinic when I called, but she turned around and drove back onto the island.

  “I’m so sorry you had to drive all the way back here,” I said, opening the door to the House for her. Our last patient was just leaving, and the outside doors were already locked. I felt annoyed on Vanessa’s behalf; a real clinic, I was thinking, would have somebody who knew how to handle these things.

  “Oh I know,” she said. “The paperwork is a lot. Don’t you worry.” And she reached out and patted my shoulder.

  VANESSA WAS BORN IN LOUISIANA, and she met her husband Jimmy there. Jimmy is her second husband. Her first, the father of her three daughters, was a mean drunk. When Vanessa finally left him, it was in the pickup truck of her second husband, Jimmy. She loves Jimmy, but Jimmy doesn’t want her to work. He says it’s too hard on her body.

  Vanessa worked construction jobs most of her life. She was a pipe fitter, a welder, and even a foreman on some jobs. Being a woman foreman wasn’t easy; you always had to prove yourself. But Vanessa was both tough and strong. These days, she looks down at her rounded body and laments the loss. “You should’ve felt my biceps, hon,” she says. “They were so strong.”

  Vanessa kept working for a while after she married Jimmy, even though the two of them could’ve gotten by on Jimmy’s income from his job at a refinery. Then Vanessa was hit by a truck on the highway just outside her home, and her back was so messed up that she could no longer stand for long periods. Construction was out. She tried working for a while in a laundromat, and for a while in a grocery store, but the pain got to her. And anyway, Jimmy liked having her at home. A time or two when we were talking, he would call and her voice would turn Louisiana-sweet while she told him she was with the doctor. Vanessa and Jimmy were uninsured, but they owned a house and were able to make the mortgage every month. Mostly, they just had to pay the household bills, plus food for the pets and for themselves. Their house was unscathed by Ike. There was never any extra money, and a time or two the lights were shut off, but usually there was just enough to get by.

  Once, during a psychiatry night visit for Vanessa’s anxiety, my mind wandered away while she was describing her travails with the house: they had to refinance the mortgage, but got a high rate because the place was zoned industrial. Pieces of concrete were pushing up through the ground all over the property as the land seemed to settle. Vanessa pried up one of the concrete coverings to find an underground tank, and her cousin, an oil-plant worker, tested it and found that it was full of old gasoline. The property was on top of an abandoned gas station. He estimated five hundred gallons of gas, with just a skin of water on top. Vanessa began to cry as she described the stress of all this—not only from the mortgage costs, but also the fear that the property was not safe for herself, or her plants and animals. “And Jimmy,” she said. “He’s been sick ever since we moved out there. I think it’s affecting him.”

  I was sitting on a chair in a corner of the room while the psychiatrist faced Vanessa. The encounter had been dragging on, and it was late. This was not the first long story I’d listened to that night. I felt a kind of skepticism slipping through my mind. What was all this business about mortgages and chemicals? Couldn’t we just get her medication and go home?

  Then the psychiatrist turned to me. “Isn’t that awful?” he said. “They’ve basically already paid for this property three times over.” I could tell he was completely engaged with Va
nessa’s story and empathized with her. He’s an older psychiatrist. He’s listened to thousands more stories than I have, and he is not tired of listening at all.

  “Oh, it’s awful,” I said, feeling a little ashamed of myself. I remembered what I had been learning in graduate school: doctors tend to rush out of encounters when we feel uncomfortable. Instead, we should slow down and ask more questions, work to build a relationship.

  So, over time, I did. I made Vanessa my patient. I learned that she kept her plants in pots because she worried about the chemicals in the ground. She had lemons, peaches, plums, tomatoes, eggplant. When I saw her in the clinic over the next few months, the encounter always wrapped up with us swapping gardening stories: How she had to move her eggplants into the kitchen because of the frost. How my kale just wouldn’t quit, but all my tomatoes gave up the ghost. How a mole got into her house inside one of the potted plants, and she had to hunt it down and kill it. I would get her prescriptions signed and we’d hug, and she’d be on her way. It was no longer a chore to care for her.

  Then one day Vanessa came in sad, because one of her daughters had been arrested.

  I told Vanessa how sorry I was. Vanessa pulled out her cell phone to show me a picture of her daughter, who was nineteen years old, thin, and smiling in a black one-shoulder dress. It was hard to imagine her in jail. “Oh,” I said. “She’s beautiful.”

  “Yes she is,” Vanessa said. “She surely is.” She flipped to a picture of Jimmy with her daughter in the living room of their house. Jimmy had a cigarette in his hand, and Vanessa’s daughter was laughing with her mouth open. The walls behind them were unpainted plywood, like the walls of the trailer addition my father had been building that summer in 1981 when he sawed his fingertip off.

  AFTER I BECAME A STUDENT DIRECTOR, I passed Vanessa’s care on to other students. But we would always hug when we saw each other, and swap a story or two. She showed me pictures of her dogs, and would occasionally text me a photo when she harvested fruit from her potted lemon tree. I still called her on the phone to help manage her patient assistance prescriptions, and sometimes we would linger on the phone just catching up. It was one of those lopsided relationships that happen in the clinical world: we both cared about each other, but I knew the intimate details of her life while she knew very little about mine. For Christmas, she gave me a pair of earrings she had made from the tail feathers of her macaw. We laughed again over the story of Jimmy and her evacuating from Hurricane Ike with the macaw in their truck.

  So I was surprised, but not shocked, when Vanessa called me one Sunday night. She had never called me before. “Rachel, you have to help me,” she said. “They told Jimmy he’s got cancer, and I don’t know what to do.”

  Jimmy had come into St. Vincent’s that Saturday, short of breath. He’d had a bad cold a couple of weeks ago, but then the cough lingered. On Thursday he began to feel short of breath, and Friday night he woke up choking for air. At St. Vincent’s, Dr. Beach had listened to his lungs and heard fluid in them, so—fearing pneumonia—he sent Jimmy to the ER. With Jimmy’s long smoking history, pneumonia could knock him out.

  The ER doctors were probably worried about a pulmonary embolus—a clot in the lung—because they did a CT of Jimmy’s chest. There was a pocket of fluid, but behind the pocket was a large, solid tumor.

  As I listened to Vanessa, I suddenly felt stricken. On my internal medicine rotation the year before, I had learned that a new study—the low-dose CT scan—was effective at detecting lung cancer early enough to treat it and to extend life. Whereas a chest X-ray could only detect later cancer, and a full-dose CT could increase cancer risk from the radiation, a low-dose CT used minimal radiation and had been shown to be a cost-effective screening tool for long-term smokers. If Jimmy had been insured, his doctor almost surely would’ve recommended the low-dose CT. But I wasn’t sure if we had even offered it.

  I had, at times, refrained from telling my St. Vincent’s patients what the standard of care would look like. I didn’t talk with my hepatitis C patients about treatment (though I often tried to find funding for annual ultrasounds to screen them for liver cancer), and I had never offered the low-dose CT to a St. Vincent’s patient. It would cost around $250 out of pocket. Vanessa and Jimmy just might have been able to swing it, if anybody had brought it up.

  The UTMB doctors admitted Jimmy, gave him antibiotics, and put a tube in his chest to drain the fluid off of his lung. He got a biopsy of the tumor, which showed small-cell lung cancer, an aggressive type most common in smokers. When he was stable, he was discharged. He was not started on chemotherapy, or offered other cancer care. So Vanessa took Jimmy home and made him some dinner that he didn’t eat, then set him up in their bedroom with the remote control. She cried until he went to sleep, then called me. How was she going to make sure Jimmy’s cancer got treated? He couldn’t have been sent home just to die.

  There I was, in my own comfy bedroom on a Sunday night, with my dog sleeping under the desk, and a patient I cared for very much asking for my help in a desperate time. I didn’t know what to do, but I did the only thing I could think of.

  “Can you meet me at St. Vincent’s tomorrow at one?” I asked.

  “Yes,” she said.

  “Okay. Bring all your financial information, and we’ll see what we can do.”

  I was struck then, as I am now, by the inadequacy of this response. With Jimmy newly diagnosed with an aggressive lung cancer, Vanessa should have been able to focus on the deeper questions that cancer makes us face: how to care for her husband, how to reckon with her own fear of his death, how to support him in having a meaningful life in the face of his diagnosis. All of these questions were somewhere in the mix, but at this moment they were obliterated by the question of how he could afford to get treatment.

  My own response, too, had become bureaucratic. This could be a time for me to learn how to support a patient through fear and grief, but instead I would learn how to apply for financial assistance. Could this be what good doctoring is about? I downloaded the forms I could find online for UTMB financial assistance, and then I thought again of Vanessa, still likely awake in her house across the bay. Staring at my computer screen, I thought, This can’t be doctoring. This isn’t it at all.

  In times of peril and grief, some distraction can be healthy. But in Vanessa’s case, the bureaucratic intricacies of applying for financial assistance would distract her for too long. If Vanessa’s most trusted advocate was a more experienced doctor, he or she might have seen the writing on the wall and taken time to ask Vanessa about her fear of death, or counsel her that Jimmy might not survive treatment anyway. But I was just a student.

  Jimmy would die, and very quickly. And Vanessa would not be ready for his death in any way.

  ST. VINCENT’S HOUSE was calm on Monday afternoon. A few patients were waiting to see their nurse practitioner at the nurse- managed day clinic, and one woman left with a grocery bag full of food from the food bank. The ladies said that Vanessa and I could use the chapel, so when she showed up we headed back there.

  The financial assistance people at UTMB had given Vanessa an application to file for assistance with the bill from Jimmy’s initial care. It needed to be returned within ten days of his discharge. So we started there.

  If I were in Vanessa’s situation, I would be at a loss. My finances are in order, but they aren’t documented. Vanessa, however, had applied for assistance from social services before. She knew the drill, and so she carried a big manila folder into the chapel that held everything we needed: pay stubs, tax returns, a copy of their mortgage agreement, their car loan, their marriage license—everything. We spread the forms out all over the chapel, and they covered the chairs and half the floor. I used the St. Vincent’s copier to make the copies she needed, and then we put it all in an envelope, with signatures, and mailed it off. It took about two hours.

  This paperwork was not designed to secure care for Jimmy moving forward. Rather, it was only to help w
ith the initial bill from UTMB. So I called Dr. Beach to see if he would sponsor a Casebook application for Jimmy, asking UTMB to take him on for unfunded cancer care. Dr. Beach was happy to sponsor the application, but warned me that it was unlikely to be accepted.

  I knew he was right. Casebook had not accepted any St. Vincent’s patients that I knew of, and the policies for acceptance were public but vague. UTMB could consider not only the severity and nature of the disease, but also whether the disease or treatment would offer “educational benefit” to students, residents, and fellows. This means that patients with unusual diseases, or who need procedures that the residents and fellows must complete for their training, may be more likely to be accepted. There is actually an acronym for this in the surgery world: RANDO, or “resident ain’t never done one.” RANDO cases are more likely to get taken on.

  So, filling out the Casebook application was also uncomfortable for me. Jimmy would not be judged on whether he was a particular human being, who cared for his wife and their pets and his stepchildren. Instead, he would be judged on whether his suffering could be made useful for someone like me.

  THE CASEBOOK APPLICATION was supposed to be approved or denied within two weeks. It was denied, but that didn’t end up mattering because Jimmy got short of breath again, and Vanessa took him to a hospital in Houston where he was admitted through the emergency room.

  He lingered there for three weeks, mostly on life support. He never got chemotherapy because he was never well enough for his body to sustain it. Vanessa would call or text every couple of days.

  “He’s on antibiotics again,” she said one day.

  “Now they’ve put him on a ventilator,” a week later.