Not if but when: After a diagnosis of brain cancer, a young dad and his family grapple with the uncertain time he has left

INDIANAPOLIS — Adam and Whitney Hayden waited for the doctor, both sitting with their right legs crossed over their left. They fidgeted their feet. They flicked them, bounced them, circled them. Whitney, 38, twisted a ring on her right hand. Adam, 36, locked his fingers around his cane. Every so often, he ran a hand over the scar on his head, where the baseball-sized tumor was pulled out two years ago.

They waited to find out if today was the day they would learn that the cancer had started growing again.

“It’s a slow-motion freight train coming toward me,” Adam said as Whitney drove them to the appointment.

That morning, they had had donuts to celebrate the third birthday of their youngest son, Gideon, who vaguely understood that his dad had a “brain boo-boo” and who was 9 months old when his dad was diagnosed with glioblastoma. In that 27-month span, Adam had blown past the median survival period of 15 to 18 months for people with his disease.

“Not if it recurs, but when,” Whitney whispered in the doctor’s pale exam room.

“That is what he told us from the very first day,” Adam responded, as if internalizing the eventuality would somehow make it easier to hear.

“Will today be the day?” she said.

His answer was firm. “No.”

“Oh!” she laughed, the tension momentarily fleeing her face. “I guess we’re done here!”

This was their routine: Every two to three months, they were back in this office, and Dr. Edward Dropcho, a neurologist at Indiana University Health, would tell them whether Adam’s latest MRI showed any cancer activity. So far, none of them had. But the Haydens knew that one ultimately would.

They couldn’t, however, know when that would be. It could be in three months, or three years, or today. So Adam and Whitney had been figuring out how to live when the closest thing they had to a certainty was that he would die, at some point, from his disease.

Since his diagnosis, he had waded into the world of cancer advocacy, spinning his circumstances into new purpose. But he and Whitney have had to balance that against enduring dreams that might go unrealized, the daily costs of living with cancer, and preserving the family life they had built.

How do you know how to spend the little time you have left when you don’t know how little time that might be?

Dropcho entered. “How’s everything going?” he asked.

Adam and Whitney’s relationship began in sixth grade when Whitney saw a photo of Adam.

His family was moving back to Indiana from Arizona and his dad was hired as a minister at the church Whitney’s family attended. A family photo was placed at the church. When Whitney glimpsed the boy with the bowl cut in the teal shirt and matching socks, she warned the other girls to stand down. That was going to be her boyfriend.

They “dated” for a time, as sixth-graders do. They broke up, drifted apart, and spent high school in different circles. Ten years ago, they reconnected at an event at the church. Her marriage had ended, his long-term relationship had dissolved, and they got a drink to catch up.

They married in 2010. A year later, they had Isaac, who would grow to be whip smart and incisive and run the show. Then Noah, athletic yet caring and ever the peacemaker. Finally, Gideon, the daredevil, who would view furniture as a launching pad, not something to be walked around.

Adam’s seizures arrived before Gideon was born.

It was the day after Christmas in 2014. They were cleaning up from the holiday when a bolt of dizziness struck him. His left leg went weak and he crumpled. Three months later, a tingle tickled the back of his skull. It wrapped around his head and tiptoed down to his left foot. The dizziness was there, too.

He was in his early 30s and otherwise healthy. His doctor wagered that it was a pinched nerve or vertigo or stress, not a seizure. He went to physical therapy.

The episodes flared, at first two to three times a month, later two to three times a day. The dizziness cascaded into fleeting left-side paralysis and vision gaps. He always knew where the nearest chair was in case he had to buckle down and ride one out.

In May 2016, he got an MRI. There, in his right parietal lobe, a tentacular orb glowed ominously in white against a dark backdrop, the ferocity of the dividing cells having taken up the contrast dye.

His doctors couldn’t be sure what it was, but they knew as much of it as possible needed to come out. Adam remained awake during the surgery two weeks later.

He was in the hospital for a few days, and then was transferred to an inpatient rehabilitation center. He relearned how to use his left arm and leg and had physical and occupational therapy. “Tied my shoes,” he wrote in his journal one day. “Feeling progress.”

Two weeks after the surgery, the biopsy results came back. He started treatment to target the tendrils of tumor that remained: six weeks of five-day-a-week radiation, six weeks of a daily oral chemotherapy called temozolomide, and later 11 cycles of five days of the drug followed by 23 days off.

A week after he was discharged, he managed to shuffle down the aisle at his little brother’s wedding, aided by the bridesmaid at his side. He stood up to give a toast in which he ruminated about the pillars of a successful relationship.

He entered this awkward middle period. What, for glioblastoma, amounted to survivorship.

It was the night before their appointment with Dropcho and Adam and Whitney were preparing dinner as the kids flung themselves off the stairs into a pile of cushy beanbags. Adam plunked a spaghetti squash onto a cutting board.

“That is a very large knife,” Whitney said as Adam sawed into the rocking vegetable. “And your left hand …”

Adam’s motor function lags on his left side. He walks with a limp and his left arm isn’t as agile as his right. Earlier, as the Haydens played soccer in their backyard, Adam swiveled his head, accounting for the three kids — 7, 4, and 3 — so one wouldn’t bump into him and take him out.

“You are not showing much faith in your occupational therapy colleagues who discharged me and said I could do things like this,” Adam told his wife, herself an occupational therapist.

They giggled and Whitney tossed him nervous looks. She helped steady the squash and the knife thunked it in half.

Adam is analytical and reflective, a lofty dreamer. He has a graduate degree in philosophy and likes to ask big questions about abstract quandaries. He still meets with philosophers for a monthly chat. Since his diagnosis, he has studied cancer with the same rigor with which he approaches philosophy. He rattles off the names of researchers and their theories about tumorigenesis — how cancers form — and papers that were presented at AACR and ASCO and the history of mostly failed clinical trials for glioblastoma. His kindergarten teacher told his parents he had “a very gentle psyche.”

He’s the type to look up from his omelet at brunch one day and say that this combination of good food and good people on a sunny day was all he needed to know that the world was not a dark place.

Whitney, meanwhile, will kvetch about how this place (one of her favorite restaurants!) took the Green Goddess salad (her favorite salad!) off the menu. She will joke with the waitress that no one consulted her, whip out her phone, email the restaurant telling them the salad needs to come back, and get a reply of “On it” within minutes — all while sipping on a mimosa.

Even on the elevator up to Adam’s neurology appointment, she needled him about buying yet another pair of sneakers. She demolishes to-do lists. When Adam poses one of his big questions, her expression telegraphs: What are you talking about?

It was like this for them: moments when stress and sadness crashed against their senses of humor. Sometimes they joked that when the time came, instead of letting Adam fade toward death, Whitney would take him into the backyard and get him with a shovel.

“Bong!” Adam chimed. They laughed about what they would tell their neighbors and they laughed at the reality that this is what they were left to laugh about.

They worried about when they couldn’t laugh anymore.

After his surgery, Adam’s first instinct was to steer away from being a “cancer mascot.” He wouldn’t be the guy who filled social media feeds with disease updates. He would hold onto who he was before his diagnosis.

He had dropped out of college and become a Starbucks barista. He climbed the ranks there and rose to a job in corporate training and development, well on his way to a solid career.

But he was embarrassed he didn’t have a degree. So at 28, he went to Indiana University-Purdue University Indianapolis. He had been drawn to philosophy and existentialism while growing up, so he studied that. It allowed him to think about meaning and identity. He fell in love with the philosophy of science and set out to earn a master’s degree. He mixed craft cocktails at night to earn money and dreamed of getting his Ph.D. and becoming a professor.

When he was on the verge of earning his master’s degree and was weighing his academic options — and after he had taken a full-time job training Medicaid officials on new software — he became a cancer patient.

He wanted, though, to be Adam, the intellectual who liked to read and write and debate. He didn’t want to get attention because he was a nice 34-year-old who got brain cancer.

In the rehab center, though, his outlook shifted. Many of the other brain trauma patients weren’t themselves. He was in a wheelchair and felt terrible, but he still knew who he was.

As he met other brain tumor patients, it became even clearer. Many were so far advanced that they couldn’t communicate. He could still speak, and speak well, so he would speak for this new community.

He gave his first presentation in March 2017 at Friedens United Church of Christ, where his dad is the senior minister. He became a regular on brain tumor online chats. He and Whitney went to Washington to lobby lawmakers for funding with the National Brain Tumor Society.

He spoke to doctors and students about his experience as a patient in hopes that it could shape how they cared as practitioners. He described the thoughtlessness of a clinician who left a chair in the middle of his rehab room, blocking his wheelchair, and the warmth of those who held his hand or hugged his wife.

The education and advocacy work expanded his world as his disease threatened to collapse it. He still had seizures sometimes, which meant he couldn’t drive. He dropped his full-time job and worked part time from home. He and Whitney installed cameras in the house so she could check to see if he had passed out from a seizure. Some of his friends distanced themselves, seemingly unsure of how to be around someone who was so sick.

And in the haze of all his appointments, the pre-diagnosis Adam seemed to slip away. With every scan and test, he was HaydenDateofBirth4/22/82 and a C71.9 — billing-ese for “cancer of the brain, glioblastoma multiforme.” He struggled at home with the fatigue from chemo and adjusting to his new life.

“I am often irritable, short-tempered, quick to scold my kids for throwing food or refusing to dress for school,” he wrote on his blog in December 2016, the same month he vowed to devote himself to advocacy. “I am on long-term disability. I cannot drive. I am stir-crazy. I am praised publicly for inspiring others with my positive attitude, but I often hurt the feelings of those closest to me.”

Speaking offered a way to turn his diagnosis into something more. He studied the field of patient narratives. He honed his story and made the depressing palatable. He cracked jokes. People listened.

“To the medical community, he’s this kind of unicorn,” said Liz Salmi, a friend and board member of the National Brain Tumor Society, who was diagnosed with a Grade 2 brain tumor 10 years ago (glioblastoma is Grade 4). He was young, with a picture-perfect family, had immersed himself in science, and could speak profoundly about the experience of living with brain cancer.

“There’s only so many people that have the ability to talk about this stuff,” Salmi said. “Because people die. If someone’s like, ‘I’m looking for someone who will speak about glioblastoma at our conference,’ there are like two names.”

Adam kept saying yes to requests. He felt empowered by the work, and a responsibility to do it. There was also a sense of urgency. After all, he wouldn’t always be able to represent patients to drug companies or the Food and Drug Administration or the National Cancer Institute.

When Adam envisioned becoming a philosopher, he imagined himself leaving behind papers and books and a record of scholarship. Maybe advocacy was a different way of leaving a legacy bigger than himself.

At the same time, it was taking him away from home. This spring, he was in Chicago, Washington twice, and San Francisco. He would be gone for a few days and then return and need to rest. The more tired he was, the more likely he was to feel dizzy. The tokenism started to weigh on him.

He left Whitney at home juggling the boys and her job. She didn’t want to limit him, but she told him it was too much.

“He gets to be a little selfish,” Whitney said as she drove to get cupcakes for Gideon’s birthday, with Adam back at home. “He doesn’t want to spend the rest of his life watching ‘PAW Patrol.’”

Adam also realized he was overstretched. He spent the summer at home.

“It’s like, imagine if your kids remembered that you were really sick and still played with them all the time,” Whitney said as she parked her Toyota Sienna outside the bakery.

His schedule was an aspect of their lives that they were trying to balance, one area where they were trying to reclaim control.

Medically, there was not much they could do. Adam’s surgery went as well as they could have hoped for. The operation took out 95 percent of the tumor, with only tiny tributaries left behind. He had an IDH1-positive glioblastoma, a mutation that came with a longer median survival time than glioblastomas overall.

But beyond the two pills he took twice a day to control his seizures, he was in a holding pattern. Cancer treatment — even if it was brutal — at least gave him goals to hit, a calendar box to cross off: another day down, three weeks to go. Adam was just waiting, while watching other patients deteriorate around him. The night before his appointment, Whitney got a text that their friend — a parent not much older than Adam, diagnosed six years earlier — had been referred to hospice care. He died a few days later.

The day after Adam’s appointment, John McCain’s family announced he was stopping treatment for his glioblastoma.

Adam had put himself on a modified ketogenic diet, avoiding carbs and boosting fats and proteins. It wasn’t proven to extend his life, he knew, but he had read about cell metabolism and its role in cancer and thought he would try it. It was an action he could take.

But he also wasn’t very hungry.

“Oh, Adam, you’re in trou-ble,” Whitney said as he stepped off the scale at his appointment.

He was 6’2”, down 2 pounds from his last appointment to 145, and hoisting up his size 30 Levi’s.

Adam hated to complain and didn’t want to be seen as a problem patient. He sometimes didn’t want Whitney to park in an accessible spot. He didn’t want people to have to go out of their way to help him. He didn’t think losing two more pounds was something to fuss about, but Whitney worried he would need as much strength as possible when his cancer recurred.

For a time, Adam wore a cap that creates electric fields in the brain and buys patients a few months if worn 18 hours a day. But it scared Noah, then only 3. Adam wanted to go on walks with Whitney without toting an extra battery. He wanted to be able to rock Gideon to sleep and nestle him into his crib without the battery slamming into something and waking him up.

So after two months wearing it nearly all the time and one month of wearing it not so much, he stopped.

“I chose quality of life over treatment,” he said at a medical ethics conference in January.

Adam’s medical care was covered through Whitney’s benefits, but money was always tight. They had given up cable and had to pay for Isaac’s Scouts fees. They still had to figure out when was the right time to max out their credit cards and spring on a trip to Europe. In movies, no one talked about how much a bucket list cost.

Adam felt healthy enough that maybe he should work more hours. But they had to weigh that against what it would mean for his disability payments — could he really work enough to make up for those losses?

In the meantime, Adam had been typing away on a philosophy paper — about what it is that we mourn when we know we’re going to die — that he had to see get published in an academic journal. It was a way to be ambitious and dream of accomplishments that might have come if none of this had happened. Part of him still wanted to see if he could get into a Ph.D. program.

And then there were the kids.

They knew there was a brain boo-boo. Adam and Whitney introduced the term “cancer” to Isaac this summer before he went to a camp for kids whose parents have cancer.

Whitney’s dad killed himself when she was 16. So they explained to Isaac that her dad — a picture of whom hangs in the living room — had died when he was a younger man, and that Adam would not grow old like most of Isaac’s friends’ dads.

Isaac grabbed onto the concept of age. “How old?” Whitney remembered him asking. “Until he’s 80? And how old will I be?”

Isaac and Noah were both in therapy, and Noah’s centered around play. He and Adam would go to the therapist’s playroom, where Noah had taken to casting a rubbery octopus with a bulbous head as the villainous Dr. Octopus. He buried it in the sandbox or locked it away in jail.

He also prepared toy food for Adam. It was a sign, the therapist said, that he knew something was wrong and that he wanted to care for his dad.

“I worry that I haven’t told my children enough about Adam’s diagnosis and they will resent me for it,” Whitney wrote on her blog in May. “I worry they’ve seen too much for their young ages already.”

“… I worry that I work too much and that I’m losing precious time with him. I worry that I don’t work enough because we have so much debt.”

“… I worry that Adam is working himself too much helping others and not thinking about me and the kids and himself. I worry that the thing I just typed above is a selfish thought.”

Death was something they had started to figure out.

Part of Adam’s advocacy was focused on getting people comfortable talking about death. He wrote, for example, for the End Well Project about “embracing death talk.”

Sometimes people suggested that Adam would be a miracle patient, the one to beat this. But that was not how he and Whitney viewed it. Through “countless hours of tears, reflection, bear hugs, kisses, worries, and sleepless nights about my wife and our children,” as he wrote in a January blog post, he had accepted his death.

It didn’t mean it wasn’t sad or scary. But he and Whitney and his parents had set his advanced directive. Separately, they had discussed establishing residency in a death-with-dignity state, where he could end his life if he chose to do so.

Because at some point, unless he dies some other way or has a seizure he never recovers from, Adam’s MRI will show active tumor growth again. There will be several options: another surgery, another round of radiation, perhaps an immunotherapy, maybe a last-ditch attempt at a clinical trial.

And then, barring some dream discovery, there will not be any more options to treat the cancer. He will likely lose more and more function. He will not be able to feed himself. He will need help using the bathroom. He will lose his ability to read and write and think and speak — the stage he fears the most.

And he will die.

“I know it’s going to happen,” Whitney said. “And I know we’ve done what we can to prepare and that I will absolutely just depend on all those people to get us through. And that’s the best plan I can come up with.

“My biggest concern is my kids,” she continued, “and helping them through the process and making it — I don’t want to say easy, because there’s going to be nothing easy about it — but making it as ‘good’ as it can be.”

Adam mourns for the future he could have lived, and he grieves not being able to spend more time with his family. In his image of the future, Isaac will be the boss somewhere, and Noah will be caring for people or his community, and Gideon will still be taking risks.

But he has confidence that his family will be OK.

“It’s Whitney,” he said.

The weekend before his latest MRI, there was a joint birthday celebration for the boys. His parents, Julie and Marc, were there. Whitney’s mom and stepdad and brother and his family were there.

“You take me out of that scene, it still happens,” he said. “It is good.”

On this day in late August, though, Adam had been right.

Dropcho arrived and told the Haydens that Adam’s MRI that week was stable from the one three months prior. “Nothing really different,” Dropcho reported. “It looks the same.”

There was discussion about tweaking Adam’s anti-seizure medicines and the need for him to gain some weight. There was an exam in which Dropcho tested the strength and mobility in Adam’s left arm and leg. And then Adam was told to get another MRI in two to three months.

Back to the parking lot, where their minivan sat in an accessible spot. Back to the anxious ambiguity they had been thrust into when the biopsy revealed what kind of cells had overrun his parietal lobe. A woman smoked a cigarette and leaned against the white sedan one spot over.

“That was a tough one for me,” Adam said as Whitney steered out of the lot.

“I love you,” Whitney said, reaching for and grabbing his left shoulder.

“I love you,” he replied.