CHAPTER FOUR

THE FEVER

Three days after his hospitalization for the induction chemotherapy, Jay had his first follow-up appointment with Dr. Everett. While he waited for the doctor, a nurse came to draw labs from the indwelling catheter that sat just below Jay’s clavicle. The nurse introduced herself, but by that point, Jay and Tara had met so many people on the medical team that her name didn’t stick. She was young—twentysomething—with long brown hair pulled back in a ponytail.

For patients with serious illness, these indwelling catheters are a godsend because they obviate the need for constant needlesticks for drawing blood, and they can last for several weeks, even months (as opposed to regular IVs, which have to be changed every few days and so swiftly “use up” all the good veins).

The nurse cleaned the ports of Jay’s indwelling catheter with alcohol before readying the Vacutainer, the plastic attachment that allows blood to be extracted from the catheter directly into the blood tubes. Jay sat on the exam table chatting with the nurse, while Tara leaned back in an armchair across from him, thumbing through a medical journal. “Well, that port of yours doesn’t seem to be working,” the nurse was saying to Jay. Tara looked up to see the nurse struggling to affix the Vacutainer onto one of the three ports that emerged from the catheter. Tara noticed that the attachments on the ports were blue. The nurse must have changed them, because they’d been white at home. The Vacutainer that the nurse was pressing onto the port attachment didn’t seem to take, because it popped right out into her gloved hand.

Jay kept up the friendly chatter as he did for all the medical folks who crossed his path, asking the nurse how long she’d been in her job, how she liked it, where she was from. The Vacutainer popped off once again, and the nurse again caught it in her hand. Tara sensed that the nurse was getting frazzled from the uncooperativeness of Jay’s catheter. There was a lot to juggle with all the ports, the attachments, the blood tubes, and the Vacutainer.

The nurse tried a third time, attempting to twist on the Vacutainer, corkscrew-like. It propelled off with even more momentum, landing on the table next to Jay, on the clean white exam paper that pulls out fresh for each patient. The nurse scooped it up and reattached it to the port. This time, thankfully, it took.

Tara watched the nurse insert the familiar tubes, one by one, into the Vacutainer—the blue-top tube, the red-top, the speckle-top, the purple-top, the black-top. The routine was so second nature to her, everything from the polystyrene crispness of the tubes to the automaticity of knowing which tubes were needed for which particular blood tests to the exact calibration of pressure required to breach the rubber tops with the Vacutainer’s hidden inner needle. By this point in her nursing career Tara had probably filled tubes with blood more times than she’d brushed her own teeth.

Yet, it was absolutely surreal for her to see Jay’s blood lap scarlet into these tubes. Everything familiar now seemed bizarrely foreign, the way a low-resolution video casts only an approximation of real life. No matter how many pixels were stitched together, this couldn’t really be Jay sitting on the table with a foot-long catheter connecting his insides to the outside. This couldn’t be Jay dangling his legs from the exam table, eliciting the characteristic clinical crinkle of the white paper with even the slightest fidget. This couldn’t be Jay—her Jay—already evincing the weariness of a professional patient, despite his ever-ready kind word even for the cleaning crew. It was hardly seven weeks since he’d been Hula-Hooping in their basement, and the exhaustion lines in his face were etched as though they’d been there for decades.

Tara kept wanting to adjust the focus, jiggle the wires, crumple more foil on the rabbit ears, anything to refocus the picture to what things were supposed to look like. She and Jay were supposed to be groaning about turning forty and about the unending dramas of teenagers. They were supposed to be stressing about whether they could swing a mortgage for the house they’d been eyeing and how best to balance saving for college versus saving for retirement. They were supposed to be getting ribbings from their kids about receding hairlines, expanding waistlines, and misplaced reading glasses. They weren’t supposed to be watching Jay’s blood spill with mournful diligence into tube after tube after tube.

The nurse finished off by flushing the ports of the catheter with saline (to prevent blood clotting within the narrow tubing). She disconnected the Vacutainer, disposed of it in the sharps bin, and gathered the tubes of blood to send to the lab. Dr. Everett came in and examined Jay. He felt that Jay was doing reasonably well after the induction chemo. Before they could schedule the next round of treatment, though, Jay would need a few weeks to fully recover from this intensive blast of chemo. Jay and Tara needed to watch carefully for even the slightest hint of infection because Jay’s bone marrow had been razed to the ground. He was now facing the wide world of pathogens, immunologically naked. Luckily, the human body has a handy alarm system for infection—body temperature. “The most important thing,” Dr. Everett stressed to them, “is that Jay needs to come to the hospital when the fever begins. Not if.”

As the doctor predicted, the “when” of the fever began the very next day, Saturday. “Ok, need some positive prayers,” Jay wrote that morning on his blog. “My temp is at 99.2 which is higher than my usual 97–98. If I spike to 100.5 I have to go to the hospital to get IV antibiotics. I am going to do some meditation and some praying that it turns around and comes down.”

Jay’s prayers and meditation did not assuage the mercury. By midday the temperature was 99.9. Tara arrived home after her overnight shift in the ER and surveyed Jay for any localizing signs of infection—cough, rash, vomiting, worsening diarrhea, burning with urination—but he had none.

Tara napped fitfully during the afternoon, checking on Jay every hour or so. The fever hovered up and down, but by 9 p.m. that evening it hit 100.5. Jay and Tara bundled into the car and drove straight to the hospital. The balm of the warm July day was hardly noticeable to them—Tara ramrod straight in the driver seat, rigidly focused on the road, Jay shivering despite his sweatshirt.

On admission to the bone marrow transplant unit (BMTU) Jay’s temperature had jumped to 101.5 and now he had shaking chills. The team instituted the standard “fever workup”—chest X-ray, lab tests, blood cultures, urine cultures—and began broad-spectrum antibiotics plus IV saline for hydration. Tara requested that he be hooked up to a telemetry heart monitor—a continuous EKG—because of his previous episodes of fainting. The overnight heme-onc fellow, Dr. Amir, ordered a dose of Demerol—a strong opioid—to control Jay’s chills.

“Been up most of the night,” Jay wrote at 3:00 a.m. “Starting to feel a little better but can’t sleep. We’ll see what happens. They should be taking my vitals around 4:00. I think my heart rate dropped when I had to go to the bathroom. This is really annoying, but it is what it is. Guess I can’t do anything the easy way!”

The next day, though, Jay felt worse. His fever raged and his appetite soured. An ache in his stomach made it impossible to find a comfortable position. “Wow, I am feeling like garbage,” he wrote on that Sunday morning. “This fever is really hot and kicking my butt.” His platelets plummeted and he required platelet transfusions to ward off life-threatening bleeding.

“My belly feels full,” he confided to Tara. She cast a clinical eye over Jay, and his abdomen did appear slightly distended. His feet seemed a little puffier to her, and the urinal at his bedside did not appear to be filling at the rate that it had been the night before. Tara was clear, though, that she was present as a family member and not as Jay’s nurse. She’d certainly witnessed the too-many-cooks phenomenon when family members with medical experience intervened in their loved one’s care. Even well-meaning efforts could have disastrous outcomes.

Tara limited herself simply to alerting Jay’s nurse of her observations. The nurse was an older white man, and Tara wondered if nursing had been a second career for him. He didn’t seem to react with the clinical reflex that was a hallmark of experienced nurses. His assessment of Jay’s condition seemed cursory, but Tara didn’t want to interfere. Her main concern was about the catheter that was still sitting in Jay’s chest while his body burned with fever.

Any indwelling catheter is a potential source of infection. Normally, our twenty square feet of skin keep the outside world safely on the outside. A catheter, however, can act as an express highway for bacteria to venture inside, which is why scrupulous handling is required. Tara winced as she remembered the Vacutainer that had slipped onto the exam table two days earlier. Sure, the white paper was clean. But it wasn’t sterile.

The standard rule is that if a patient appears to have an infection, you immediately “pull the line.” Even if it looks perfectly clean, it could still be a conduit for infection. No one wants to remove an indwelling catheter unnecessarily, though, because inserting one is not a minor procedure. (Whereas the typical central lines of checklist fame can be inserted at the bedside, indwelling catheters for chemotherapy are surgically implanted in the operating room.) So you don’t want to remove an indwelling catheter willy-nilly. But if you think the catheter could be the source of infection, it has to be pulled, no matter what.

All day Sunday, Jay complained about his stomach bothering him. He continued to have a fever, and Tara couldn’t figure out why they hadn’t pulled the catheter. Midday, the nurse informed Jay of the preliminary results of his blood cultures. “There’s all sorts of stuff growing in there,” he said. Finding a mix of organisms in a culture rather than a single organism suggests contamination. They’d have to let the cultures grow until the organisms could be identified to see whether they represented true pathogens or just random contaminants. That would take another twenty-four hours.

Still, Jay was continually febrile, despite the antibiotics. And his bone marrow was shot, so his defenses against infection were minimal. Those two facts should be reason enough, Tara thought, to pull the line. But all day Sunday the catheter remained in use—for fluids, for blood transfusions, for drawing blood samples.

Like all hospitalized patients, Jay had been given an incentive spirometer to help bolster lung capacity. Patients blow into a tube and attempt to keep a plastic ball afloat for as long as possible. But Jay could hardly manage a puff. The ball sat limply at the base. “I can’t take a deep breath,” he told Tara. “My belly is so full.”

During the night his breathing was so noisy that it woke Tara several times. She mentioned this to the overnight nurse, who said this was from the fever. Tara also pointed out that Jay’s urine output seemed to be decreasing. The nurse said this was also from the fever.

The next morning, Monday, Jay’s feet were more swollen and in Tara’s opinion he seemed to be working harder to breathe. She was also increasingly concerned about his I’s and O’s.

I’s and O’s stand for in’s and out’s, and if there’s one thing that nurses keep track of scrupulously, probably even in their sleep, it’s I’s and O’s. The amount of fluid going in and the amount going out need to be assiduously measured and they need to be balanced. Too little fluid in and the patient could be dehydrated; too much fluid in and the patient could be overloaded. At the other end, too little fluid coming out and the patient could be in renal failure; too much fluid coming out and the patient could be overmedicated with diuretics. Keeping track of I’s and O’s is a critical nursing task.

Tara watched the amount of urine accumulating in Jay’s urinal and it definitely seemed lower than the day before. IV fluids were still running full force into his body through the catheter, but if his kidneys weren’t able to keep up, the fluid could start accumulating in his legs, lungs, and abdomen. Tara informed the day nurse, a soft-spoken woman of Indian descent, about her concerns regarding the imbalanced I’s and O’s. But the nurse didn’t seem to react to this information. She didn’t whip out her stethoscope to listen for crackles in Jay’s lungs or press on his calves to check for pitting edema of the soft tissues. Tara recalled the nurse just staring back at her, blinking robotically, “like one of those characters in a cartoon.”

Later that morning, the bacteria in Jay’s blood cultures were identified as MRSA—methicillin-resistant staph aureus. This was both terrifying and relieving for Tara. Terrifying, because blood-borne infections with MRSA are dire, but also relieving, because now there was an explanation for Jay’s fever and the treatment could be tailored to that.

Once MRSA had been confirmed, of course, there was no choice but to pull the line. However, because Jay’s platelets were still low, he would need additional platelet transfusions to effectively stanch the bleeding in the wake of the catheter’s removal. Plus Jay was still anemic, so he needed a regular (red-cell) blood transfusion as well. This could take hours.

Tara steamed inwardly as she watched the nurse administer the blood products on her own. Proper protocol requires two nurses to be present at the beginning of any blood transfusion so that identity and blood type can be meticulously crosschecked. But at this point, she was too exhausted to complain. She’d hardly slept in thirty-six hours and felt like the staff was starting to tune her out. They’d probably already pegged her as one of those “difficult” family members who just made their work harder.

Dr. Chowdury, the heme-onc fellow, came by on her rounds, and Tara felt instant relief at seeing her, remembering how attentive she’d been during Jay’s admission the previous week. Tara unloaded her pent-up concerns: Jay’s difficulty breathing, the fullness in his abdomen, the edema in his feet, the decreased urine output. Dr. Chowdury listened carefully and examined Jay. Jay pointed to his right chest, saying that it was hurting there now. Dr. Chowdury ordered a chest X-ray, as well as an abdominal X-ray.

There was a different hematology attending on the ward this week—Dr. Mueller—who came by shortly thereafter. In Tara’s recollection, Dr. Mueller had the rosy cheeks and portly build of a female Santa Claus. But she wasn’t exactly jolly. Her tone was rather terse when Tara again related her concerns. Even though Dr. Chowdury had listened attentively, Tara was well aware that the attending physician was ultimately in charge, so it mattered what Dr. Mueller thought.

Dr. Mueller listened to Jay’s lungs and commented that she heard crackles at the right base. Crackles could signify a pneumonia, but they could also represent fluid overload. The X-ray would help distinguish between those two possibilities. Tara noticed that Dr. Mueller did not examine Jay’s abdomen, even though Jay had been complaining of right-sided abdominal pain. Jay had sported six-pack abs his entire life, so what might seem like a little middle-age flab on some people, Tara knew, was abnormal. For Jay, this was true distention.

Tara waited anxiously for the X-ray results, but they turned out to be unhelpful. There was no specific pneumonia or fluid buildup that could explain Jay’s increased work of breathing. Tara knew that the diagnostic process was rarely straightforward, especially in patients whose immune systems had been pummeled by leukemia and then further trammeled by chemotherapy. Still, something was going on, and something needed to be done. Jay was now talking in whispers because it was too hard to speak at a normal volume.

“Look at how hard he is working,” Tara pointed out to the nurse.

“It’s from the chemo,” the nurse replied.

“Could we please start him on oxygen?” Tara asked.

“He doesn’t need it,” the nurse said, pointing at the oxygen saturation monitor, which showed his levels to be in the normal range, though edging down toward the lower range of normal.

Tara was losing her patience. “His respiratory rate is in the thirties,” she said, pointing at Jay’s heaving chest. “And his heart rate is in the 120s to 130s. Sustained! He can’t keep up like this.” She recalled the nurse just standing there, looking at her with that same cartoon-character blank look. Tara had vowed not to interfere with Jay’s actual medical care, but she just couldn’t take it any longer. She stared straight at the nurse and said firmly, “Go get me a nasal cannula.” The nurse complied and returned shortly thereafter with the oxygen setup.

Later in the day, a chatty email arrived from their daughter Sasha in China. “I ate mushrooms and some beef and fish and a lot of fried rice. And some fried stuff (I’m gonna learn how to make it today). It’s actually pretty good food, I am going to miss it, and tea, when I get home.” She was teaching English at an orphanage, supplementing the lessons with Frisbee and basketball for the kids. She’d hiked a glacier-covered mountain, subjected herself to the rigors of Tibetan dancing, and was trying her level best to follow the Chinese soap operas that her host family favored. Her visit to a monastery left such an impression that she bought a scroll of Chinese prayers to give to her father and had been sketching the monks deep in meditation. “I hope you know I am going to be past exhausted when I get home. It’s a 12-hour time change. I’ll want to sleeeep in bed for a while. And eat steak. And Papa’s potatoes . . .”

Her optimism and excitement bubbled through, almost as though she were standing there right next to them. Sasha still did not know that her father was in the hospital, or even that he’d been diagnosed with leukemia. She didn’t know that Jay had a fever and was struggling to breathe. But her letter brought a burst of warmth into the gray hospital room. Tears ran down Jay’s cheeks as Tara read the letter aloud. “I’m so . . . proud of her,” he whispered between gasps for breath.

It still weighed on Tara and Jay that they hadn’t disclosed to Sasha all they were struggling with. But they accepted this burden, even gladly, because they knew they’d enabled her to enjoy this once-in-lifetime experience to its fullest. The pain would come—there was no way around it—but they could protect their child for a little bit longer.