CHAPTER TWO

A SEA OF UNCERTAINTY

Not every naval aviator is game enough to give it a go at the Hula-Hoop, but Jay did not intimidate easily. Facing off against the Wii Fit Hula-Hoop game, there was the lieutenant commander in nothing but his boxers, gyrating his hips like a belly dancer in the family basement on a Friday morning in late May. As a naval reservist who flew in E-2C Hawkeye turboprops, Jay had to pass a grueling fitness test every six months, so he was always sniffing out creative ways to stay in shape. What could be better on a warm spring morning than Hula-Hooping in your skivvies?

A lean six-footer who didn’t smoke, drink, or get sick, Jay was a relentless straight arrow. At thirty-nine, he was in as good physical shape as when he’d graduated from the Naval Academy. His day job was as a bank manager, and he dressed the part, even on weekends. But he had an easy laugh and an even easier smile.

The Hula-Hoop, though, is not for the faint of heart, especially without proper gear. On Saturday morning, Jay was feeling its effects. “My nuts are sore,” he confided to his wife, Tara, confessing his boxer-shorts faux pas. She told him to call his doctor, but he shrugged it off. As an experienced ER nurse, Tara had handled many a weekend warrior with pulled groin muscles. She rattled off the basic treatment: jock strap, ice packs, ibuprofen (with food, please). And lay off the Hula-Hoop for a few days!

Tara had an ER shift the next day, and so she tiptoed out of the house while Jay and the kids were still sleeping. But around 9:30 on that Sunday morning, Jay called Tara and said his pain was now 8 out of 10 and he was nauseated. Tara told him to get to the hospital ASAP for an ultrasound because these could be signs of testicular torsion, a certifiable emergency. If a testicle is not surgically untwisted, it can die from lack of oxygen. This time, Jay complied.

In the emergency room, however, the ultrasound showed no torsion. A slew of routine labs clocked in as normal, with the exception of a slightly low white-blood-cell count. The pain was chalked up to overly exuberant exercise and the lieutenant commander was sent home with ibuprofen and ice packs.

White blood cells serve as the public face of the body’s immune system. The various subtypes of white cells—neutrophils, lymphocytes, monocytes, basophils, eosinophils—each have specialized roles in protecting the body against bacteria, viruses, parasites, cancer, and allergens.

The white count—as it’s usually referred to—is typically elevated when there is an infection. But some infections can lower the white count. When Jay’s urine culture grew E. coli, urinary infection seemed a reasonable explanation. Jay was given ten days of ciprofloxacin, an antibiotic, with a plan to repeat the white count when the course of treatment was completed. After a day or two sitting on ice packs, Jay’s groin pain resolved and he was back at work at the bank.

The repeat labs, though, showed an even lower white count. Within a few days Jay and Tara were sitting in a hematologist’s office puzzling over the results. And it was a puzzle, as Dr. Selwin pointed out. Jay was squeaky-clean healthy. He had no fever, weight loss, or swollen lymph nodes. He had no rashes or joint pains. He hadn’t traveled recently to an exotic locale or received a blood transfusion or gotten a tattoo from a seedy parlor or taken strange herbal remedies purchased off the Internet. He was just a little bit tired. And when you are raising two teenagers, working long hours in a bank, and keeping up as a naval reservist on the side, well, you’d be expected to be a little tired.

The clinical picture did not fit the profile of serious illnesses such as leukemia or HIV that can present with a very low white count. Statistically speaking, the low white-blood-cell count was most likely due to an ordinary viral syndrome. The other possibility was a condition called cyclic neutropenia, in which the white cells periodically drop, likely from a genetic disorder. In either case, the hematologist thought it would make sense to give Jay a dose of filgrastim, a bone marrow stimulant, just to get his white count out of the danger zone.

But this didn’t feel right to Tara. Jay had always been perfectly healthy, and he didn’t really have any symptoms of a viral syndrome. The urinary infection had been fully treated. Why should his white count be low? She asked Dr. Selwin to do a bone marrow biopsy to figure out what was going on inside. Dr. Selwin hesitated.

A bone marrow biopsy involves inserting an intimidatingly large needle into the hipbone to extract a sample of the marrow and inner bone. The bone marrow is the hive where the blood cells of the body develop, so a biopsy permits doctors to examine the immature forms of the blood cells. They can see if the cells appear aberrant (as they do in cancers such as leukemia and lymphoma). They can also see if the bone marrow has stopped producing blood cells altogether, which can occur as a result of infections, medications, toxins, radiation, genetic abnormalities, autoimmune disorders, or certain vitamin deficiencies.

So when it comes to figuring out why blood cells aren’t behaving as they should, the bone marrow is where the money is. But it’s not a minor procedure. When I was a resident at Bellevue Hospital at the height of the AIDS epidemic, our wards were filled to the gills with feverish patients who had abnormal blood counts and needed bone marrow biopsies, way more than the overworked hematology fellow could possibly keep up with. Waiting around for the fellow to be available drove me crazy. Besides delaying care for my patients, it delayed discharges, which kept my patient load high. So the only practical recourse, I decided, was to just learn to do it myself.

I tagged along with the kindly but exhausted hematology fellow for a week. There were so many bone marrow biopsies to do that I quickly got enough procedures under my belt to start doing them for my own patients. Of course, when word got out that I was certified in bone marrow biopsies, I was soon doing them for everyone’s patients. I began stocking the biopsy kits in my locker (underneath my supply of granola bars) so that I wouldn’t have to keep running down to central supply each time I needed one.

The thing that struck me most about the bone marrow biopsy was how physical a procedure it was. Most medical procedures I’d done to that point—spinal taps, arterial lines, central venous catheters, removing fluid from swollen abdomens or lungs—were delicate transactions that required a deft and careful touch. A bone marrow biopsy, on the other hand, required brute force.

A six-inch needle the width of a ballpoint pen is pressed through the patient’s skin and soft tissue into the hipbone. Local anesthesia is used, of course, but the needle needs to be forced, corkscrew-like, deep into the bone. It’s like twisting a wine-bottle opener into granite. You have to bear down and twist with real muscle to get that needle several centimeters into the hipbone. True, only the outer layer of bone—the periosteum—possesses nerve receptors and can detect pain, but the intense pressure of a doctor grinding deep into the bone is not lost on the patient. Or the doctor.

So I understood why Jay’s hematologist didn’t jump to a bone marrow biopsy willy-nilly. It’s an invasive and painful procedure, with risks of infection and bleeding, so should be done only with careful thought. Dr. Selwin said he didn’t think Jay needed one, or at least didn’t need one yet. Jay didn’t have any symptoms of a malignancy or severe infection (fever, weight loss, swollen lymph nodes). “Besides,” Dr. Selwin pointed out, “what happens if I do the bone marrow biopsy and then it turns out not to be covered by your insurance? You could be stuck with a $5,000 bill.”

Tara could see that Dr. Selwin was thinking about the whole patient, not just his narrow sliver of expertise, and she appreciated that. She’d seen him at work in the hospital—he was conscientious and thorough. But she just wasn’t comfortable with the low white count. She pressed him to do the bone marrow biopsy.

Dr. Selwin’s preference was to give the filgrastim a chance before deciding whether Jay truly needed a biopsy. But he’d also seen Tara’s clinical instincts and her willingness to go the extra mile for his patients. “Okay,” he finally said. “For you, I’ll do it.”

When the diagnosis came back as acute myeloid leukemia (AML), Dr. Selwin was as shocked as anyone. AML is a cancer of the white blood cells, and as its name suggests, it usually presents acutely. Patients with AML suffer raging fevers, drenching sweats, grinding fatigue, and bleeding gums. They can present in leukemic crisis in which floods of cancerous cells unleash hemorrhages, blood clots, overwhelming infections, respiratory distress, kidney failure, heart attacks, and strokes. Most patients newly diagnosed with AML are not capable of standing with crisp military posture, or piloting airplanes, or doing the Hula-Hoop. “I can’t believe it myself,” Dr. Selwin said.

The Brownian motion of life has a way of knocking seemingly irreconcilable events up against each other. And so it was that twenty-four hours after AML had macheted into their lives, Jay and Tara were seated amid a picturesque field of wildflowers, posing for a photographer with their two children. Tara had arranged this family portrait months earlier, because fifteen-year-old Sasha was setting off in two days for a once-in-lifetime trip to China. Sasha had been studying Mandarin in earnest, and she was now embarking on a month-long language-immersion program.

With raw and ragged emotions, Jay and Tara perched on a quaint stone bench, while Sasha and thirteen-year-old Chris goofed around behind them, mugging for the camera. Tara and Jay had made the difficult decision to not tell their children about the diagnosis just yet. They wanted Sasha to enjoy her long-planned trip with an unburdened heart. Jay and Tara gripped hands tightly during the photo shoot and leaned their heads together—his dark-brown hair against her red—while their children teased each other and cracked jokes. “We bolstered the weight of the world on our shoulders,” Tara recalled, “to shield our children from this painful reality.” The portrait shows a beautiful smiling family surrounded by a profusion of pink and purple flowers, with an old wooden fence sagging comfortably nearby.

Two days later they saw Sasha off at the airport. Holding their own emotions painfully in check, Tara and Jay hugged their daughter and sent her off on her long-anticipated adventure.

The hospital where Dr. Selwin and Tara worked did not have a specialized unit for leukemia, so Jay was referred to a big-city cancer center and that’s where Jay and Tara found themselves shortly after they’d bid farewell to Sasha. For this initial consultation they were encouraged to bring family members, so the conference room was packed with Tara’s and Jay’s siblings, parents, and brothers- and sisters-in-law, all seated around a richly textured oak table.

Tall and good-natured, Dr. Everett took the time to get introduced to everyone in the sprawling family and genially tolerated everyone’s eccentricities. But he was also blunt. He wanted to admit Jay to the hospital right away, as soon as the meeting ended, in fact, to begin chemotherapy.

Jay’s robust health and lack of classic AML symptoms were good news, Dr. Everett said. The fact that Jay’s labs—other than the low white count—were all normal was also good news. The fact that he hadn’t experienced any infections or bleeding was more good news. All of these factors improved his odds. A true prognosis could not be entertained, of course, until the specific subtype of AML was known, but that wasn’t any reason to delay the start of treatment.

AML is actually a conglomerate of subtypes, some that are known to be curable and others that carry graver prognoses. Although Jay’s subtype wasn’t known yet, an otherwise healthy person like him was the kind of patient for whom a cure was possible, even probable. Jay would ultimately require a bone marrow transplant, but doctors could fashion it from his own cells (an autologous transplant). They would harvest some of Jay’s cells and protect them while the rest of his bone marrow was ablated by chemotherapy. When things settled down, they’d give Jay back his own cells to repopulate his bone marrow. There are always potential bumps along the way when it comes to removing, ablating, and restoring someone’s immune system, but it was all eminently doable. Given the possibility of a full cure, chemotherapy should be started now. Today.

But there was a hitch. A uniquely American hitch. The kind of hitch that occurs only in places where the fine print of insurance policies can end up directing medical care. Jay had been at his current job for fifty-one weeks—a week shy of the one-year mark that he needed in order to qualify for short-term disability. If they started the chemotherapy now, he would be rendered ineligible for disability payments.

When Jay had first been told of the AML diagnosis by Dr. Selwin a week earlier, tears ran down his face. The first question he’d asked the doctor, in a quivering voice, was, “What will happen to my kids?”

And that question was still at the forefront of his mind. He and Tara knew that the treatment was not going to be easy—physically, mentally, or financially. As it was, Jay and Tara were still recovering from Jay’s job layoff a year earlier. They’d reluctantly uprooted their children from the only home they’d ever known and driven fifteen hours to relocate near a new job and grandparents. At the time of the AML diagnosis, they were still living with Tara’s parents, trying to save money to buy a house. Even with health insurance, a major illness could drain their savings.

And who knew what Jay would feel like at the end of his treatment and whether he’d be able to return to his job at the same level. Tara was putting in fifty to sixty-five hours per week in the ER, but even that might not be enough to support a family of four. Jay could be out of work for months, maybe even a year. Disability payments might be critical to their survival. The uncertainties of his health were agonizing enough. Jay didn’t want to risk giving his family an additional hardship if there was a way to provide some sort of financial cushion. All on account of seven days . . .

So Jay asked his new hematologist if they could delay the start of treatment by one week. Dr. Everett hesitated. In the scheme of things, given the months and years it takes for a cancer to develop biologically, seven days probably wouldn’t make a difference. But once you are in the ring, as it were, you never want to give cancer even the slightest edge.

But then again, you also don’t want to pull the financial rug out from under a family about to embark on one of the most wrenching, frightening journeys imaginable. And how awful to put a patient in the horrific position of choosing between his health and his family’s financial well-being. As a physician, you want your patient to be in an emotionally strong position before embarking on a treatment course like this. Chemotherapy is a bulldozer, and it’s not just the patient who feels the effects.

Luckily, all of Jay’s good prognostic factors—young age, excellent health, lack of symptoms—were a buffer. The AML hadn’t exploded yet, and there was no sign that this was imminent. Clinically, there wasn’t any good reason that they couldn’t wait seven days.

“This would be highly unusual,” Dr. Everett said, but he agreed to postpone the first treatment—induction chemotherapy—for a week.

“Game on!” Jay wrote on July 1 in the blog he’d begun keeping for his family and close friends. “Well, all we know right now is that it’s AML, a type of Leukemia. I will be tested tomorrow (bone marrow again!) to determine if I have APML. This would be the best type of AML to have. The doctors don’t think it’s this one but I can keep my fingers crossed. Either way I will probably start my first round of Chemo next Wednesday.”

July 1, coincidentally, is also game on for all the new interns, residents, and fellows in the hospital. It’s the first day of the new medical year, so everyone is ratcheted up a notch on July 1. (I’ll talk about the so-called “July effect”—if there actually is one—later on in the book.) The calendar coincidence did not go unnoticed by Tara. She was always vigilant as a nurse, but she was extra vigilant in July.

Jay called the benefits office at his job and verified that he would qualify for disability on July 8. The family health insurance was through Tara’s job, so she would need to keep working in the ER during his treatment. While waiting for July 8 to arrive, Jay did the repeat bone marrow biopsy for the subtype testing. “Well it was a fun filled day today,” Jay wrote in his blog. “They drilled into my hip again for bone marrow. We will get the tests back on Tuesday, but that is the fun part.”

He also learned his tolerance—or lack thereof—for drugs. “I am truly a light-weight,” he wrote. He’d been given some moderate-level pain medications before the procedure, and when it was all done, he promptly passed out in the elevator on his way home. After some fluids and monitoring, he was sent on his way. He quipped on his blog that he’d make a lousy drug dealer.

Induction chemotherapy is the most powerful round of chemotherapy, intended to obliterate the cancerous cells as forcefully and definitively as possible. Despite all of our medical advances, however, chemotherapy is still a crude instrument. It drops like an anvil on rapidly dividing cells—the sine qua non of cancerous cells—but in its wake will mow down all other rapidly dividing cells in the body, such as bone marrow cells, hair cells, and the cells that line the mouth, stomach, and entire gastrointestinal tract. Hence the cardinal side effects of chemotherapy—nausea, vomiting, mouth ulcers, hair loss, plus decimation of red blood cells, platelets, and healthy white cells. Loss of these cells leads to anemia, bleeding, and infections.

As such, induction chemotherapy is usually done as inpatient treatment so that the patient can be monitored closely for these potentially deadly side effects. (Subsequent rounds of chemotherapy with milder doses can often be done on an outpatient basis.)

Jay and Tara waited nervously through that first week in July but endeavored to keep the home routine normal. They sat down with thirteen-year-old Chris and told him about Jay’s diagnosis. They explained that Daddy would be very sick for the next few weeks but that he would be getting good medical care from his doctors and nurses. They explained that they would tell Sasha about it when she got home from her trip in China. They kept things as calm and low-key as possible. As it happened, Chris had a weeklong sleep-away camp coming up. Jay and Tara agreed that it would be good for him to be with his friends and not to have to witness the harsh first round of chemotherapy. They helped him pack and kept up their smiles as they saw him off on the bus.

The day before Jay’s admission to the hospital for induction chemo, the extended family gathered to help him shave his head. Tara’s five siblings, plus spouses and parents, assembled under the majestic maple tree in her parents’ front yard. It was lighthearted and wrenching all at the same time. Tara’s father sang in Italian like a barber as he tried to give Jay a buzz cut. The clippers jammed in the middle of his aria, and they had to dig out regular scissors. The crew of barbers was ridiculously inexperienced and the process took more than an hour. Jay—who’d been through the head-shaving routine multiple times in the military—tolerated his motley groomers good-naturedly. Between the goofiness and jokes, though, each family member was overcome with tears at some point and quietly excused him- or herself to weep in a distant part of the yard.

Tara’s sister snapped a photo of Jay just before the shaving ceremony began. Jay’s eyes crinkle at the corners and he almost looks mischievous. There was no fear apparent in his two-hundred-watt smile. But hours later, at one in the morning, he rolled his face into Tara’s chest, sobbing. “I’m scared,” he told her. His body was shaking, and all Tara could do was reassure him that he wouldn’t be alone. She caressed the smooth skin of his head, holding her own fears inside so as not to worsen his anxiety. Jay finally drifted off, while Tara remained awake trying to wrestle away her fears.

The next morning, July 8, Tara and Jay drove an hour to the cancer center for the induction chemotherapy. “This place will become my second home for the next two years,” Tara remembered thinking. For a facility with such a high reputation, it was shabbier than she’d expected. The ceiling tiles were stained, the walls dented, and the flooring reminiscent of the 1950s. But Tara had worked in enough hospitals to know that externalities ultimately had no bearing on quality. She’d worked with fantastic medical staff in the unfanciest of settings. Coming in as a patient, though, made you see things a little differently. A little window dressing wouldn’t have hurt.

“The Games Begin!” Jay had written in his blog the night before. And begin they did. Jay was whisked straight to the interventional radiology suite to get an indwelling catheter implanted in his chest. This would stay semi-permanently for the duration of his chemotherapy, minimizing the need for dozens of needle-sticks and IVs. Tara watched with relief when Jay was wheeled back on a stretcher, deep in conversation with the burly orderly, asking the orderly how many children he had and how old they were.

The site of the catheter placement was sore, and the pain worsened over the course of the afternoon. “They gave me some pain meds,” Jay wrote later that day, “and guess who passed out again! Now the most they’ll give me is Tylenol!”

Once the catheter was placed, Jay was ready to start his chemo. But when Dr. Everett arrived, there was bad news. The final results of Jay’s bone marrow biopsy showed a mutation known as trisomy 11—a rarer and nastier form of AML. Dr. Everett, who had seemed so jovial and upbeat at their initial meeting, was all business now as he related this grimmer news. Chemotherapy would still start today, but he would rejigger the components to take this new information into account. And Jay would not be able to use his own bone marrow for a transplant—they’d need to turn to the family for donors.

The week of the induction chemotherapy was brutal. All the textbook side effects showed up like clockwork—nausea, vomiting, mouth sores, plummeting blood counts. Tara ran back and forth between Jay’s hospital and hers, keeping up as many ER shifts as she could. Her five siblings and their spouses and their in-laws tag-teamed with Jay’s work colleagues and Tara’s parents so that Jay was never alone during this rough week.

“Thank you for the inspirational notes and the visits,” Jay wrote in the blog. “It’s nice to have people come and go and just watch a movie. Plus in my new condition I ask much more personal questions, since what do I have to lose? I have cancer—you have to answer me now! :-)”

The thing Jay feared most was being helpless. He was determined not to turn into one of those hollow-eyed patients he’d seen in movies, who could barely muster the energy to sip ginger ale through a bendy straw. So no matter how rotten he felt, every few hours he lugged his IV pole and made his rounds of the floor. Tara joked that it was like he was running for office, the way he greeted each and every person he passed, each and every time.

“Feeling pretty good right now,” Jay wrote, several days into the chemo. “Think I have the right mix of nausea and chemo drugs going on. Tara and I are about to start my evening walk. Going to do about 1/4 mile.”

Jay was on the BMTU—the bone marrow transplant unit—even though he wasn’t yet getting a bone marrow transplant. The BMTU was the central location for all hematology patients with leukemia. Dr. Chowdury, the heme-onc fellow, was in charge of Jay’s day-to-day care in the BMTU. Tara recalled that Dr. Chowdury spent more quality time in Jay’s room than anyone else, even more time than the nurses (high praise, indeed, coming from a nurse). For Jay and Tara, Dr. Chowdury’s presence was instantly calming and reassuring. Her unhurried style, her willingness to answer every question, and her genuine caring were a lifeline during those stressful days. Dr. Everett was the attending guiding Jay’s overall treatment but Dr. Chowdury was the boots-on-the-ground doc who was on the BMTU all day, every day.

“I hope you are all doing as well as I am, LOL,” Jay wrote, midway through the chemo. “My chin is up. The tough days will be coming and I am ready for the fun. Lips won’t be good and neither will the end where the sun don’t shine. But I know I can handle it. . . .”

Two days later, Jay wrote, “Well, I must really be settling into a schedule now. I woke up at 5:30, shaved, then went for my 13-lap walk along with some Wii Fit exercises. It feels good to tire my legs and abs a bit. Makes me feel alive.

“Feeling good, but not tasting so good. The chemo taste in my mouth is a bit much right now. But I will trade bad taste any day I can exercise.”

On July 13, on last day of chemo, Tara arrived in the evening after her shift. It had been a long day, and she soon fell asleep on the couch in Jay’s room. She awoke at 3 a.m. and her eyes, per usual, went right to Jay. She sprang off the couch when she realized that Jay’s bed was empty. She found him in the bathroom, struggling to untwist his tangled IV lines. As she reached to help with the IVs she noticed a strange look on his face. His skin was pale and sweaty, and before she could even say anything, he began to have a seizure. Tara caught his body as he collapsed, but they both tumbled to the floor. Every hospital bathroom has a call button, but Tara—pinned beneath her six-foot husband—couldn’t reach it. She screamed for help, but the bathroom door was closed, and Jay’s room was more than thirty yards from the nurses’ station.

Tara struggled to extricate herself from her husband’s shuddering body, shimmying and crawling until she could just reach the call button. A nurse came quickly, and her immediate calls for help brought in a posse of other nurses plus the overnight heme-onc fellow, Dr. Amir.

Tara recalled being surprised that nobody wheeled in a code cart or oxygen, but they did perform an EKG, which showed a very low heart rate—thirty beats per minute. The working explanation was that the slow heart rate caused syncope (fainting), which in turned caused the seizure.

The next day both a cardiologist and a neurologist came to see Jay. A CT scan of the head and a tilt-table test (to evaluate causes of fainting) were negative and both doctors “cleared” Jay. Dr. Everett was away, but the covering hematologist was in agreement that all of this was a side effect of chemo, and the next day Jay was discharged home.

Tara argued that should this happen again at home, Jay could easily fall and smash his head. She thought Jay should stay at least another day in the hospital. But the covering hematologist felt that the risk of infection should Jay stay longer in the hospital far outweighed the risk of falling.

The first days at home were relatively uneventful. Jay had an armada of anti-everything to take—anti-fungals, anti-virals, anti-emetics, antacids, and, of course, antibiotics. Now that the chemotherapy had rolled, tank-like, over his immune system, he was a sitting duck for infection. Home was less dangerous than the hospital in this regard, but it was still a risk. Every hiccup, every dust mite, every smudge could harbor a potentially deadly pathogen. The medications were an attempt to weave a web of protection, but no web is ever solid. Jay and Tara had to check his temperature round the clock, remaining vigilant for even the slightest fever, with instructions to return to the hospital immediately when the thermometer hit 100.4 degrees. “It’s not a matter of if,” said his doctor, “but when you get a fever.”

“Up again in the middle of the night,” Jay wrote at 4:00 a.m. on his second night at home. “Don’t feel bad for me, as I am still at home which is awesome. More choices on TV and the Internet is better! I am really feeling weak due to my low blood counts and had to pass on a shower today. Tara was nice enough to get me cleaned up. Wow, a great wife and a nurse! I highly recommend sponge baths, but not if you need to get leukemia to get one . . .”

Two days later, Jay was feeling stronger, so Tara helped him take a much-needed and much-desired shower. They were easing into the shower stall when suddenly Jay began to wobble and his eyes rolled back in his head. Tara braced herself to catch him as he started to lose consciousness. He landed with a thud against her. She was able to guide him down to the floor slowly but was once again pinned beneath him. She yelled for her mother to come help, but when she turned her head, she saw that it was their son standing in doorway. Tara forced her voice to calm down. “It’s all okay, Chris. Daddy’s okay, but I just need Grandma’s help now. Please get her now.” When Tara’s mother arrived in the bathroom, they laid Jay flat and elevated his legs. Jay regained consciousness quickly and was devastated that his son had to witness this. His first words were, “Please go take care of Chris.”

That night, Chris parked himself near the couch where his father slept. He set out his sleeping bag just a few inches from where Tara was bedding down on the floor and spent the night there. Tara was heartbroken to see how much the episode in the shower had rattled her son.

It rattled her too. This was now Jay’s third episode of syncope. Tara was less concerned about the cause of the loss of consciousness—he’d already had a full evaluation from a cardiologist and neurologist in the hospital—than that it could happen at a random time. What if she hadn’t been right next to him in the shower? If he slammed his head on a wall or on the floor going down, he could easily hemorrhage into his brain. With his platelet counts decimated by the chemo, the bleeding could be unstoppable.

Tara had helped so many patients and families deal with illness, but this was the first time she herself had descended into the existential panic that comes with serious disease. There was nothing that could offer a bedrock of certainty—not her nursing experience, not the hematology textbook she’d checked out of the medical library, not the skills or qualifications of Jay’s doctors—nothing. The terrifying truth is that when you or a family member gets sick—no matter how many friends and family are there for you, no matter how superb the medical team is—you are still alone in a sea of uncertainty.