by Matt Richtel
But I took Dr. Brunvand’s point. He was a fighter and, in this case, was channeling the fighter in Jason, who was back on the mat again, knife in his side.
After I got off the phone with Dr. Brunvand, something happened to me that hadn’t happened during the whole ordeal. I cried.
On April 19, I landed in Denver to spend a few days with Jason. He was staying in his mom’s modest single-story Denver house, beige brick on the sides, with a green roof. In the front room, Jason sat in an aging recliner covered by a towel and a sheet. The room smelled like the unfiltered cigarettes smoked by his mom. His feet were warmed by gray hospital socks. He looked like an ancient mariner, in boxer shorts, full head of hair.
“Hey, Rick.” Not much life in his voice.
“Greenie. You look like shit.”
“You’re telling me. I think I’ve got a broken back.”
He didn’t know what was going on, and I sensed the doctors weren’t sure either at that point. How could they be? Jason had dealt with so many different foes—cancer, infection, medication, graft-versus-host disease. Jason couldn’t move so much as to walk to the bathroom. His mom waited on him hand and foot. The pair were in fine form, alternately gibing at and comforting each other, as in the conversation they had after she came in from having a smoke outside.
“Did you have a good smoke, Ma? It’s time to take my insulin.”
“This starts the minute I get up in the morning. Do this, do that.”
“I have to take insulin, Ma, or I’ll die.”
He pulled up his T-shirt, giving way to a little paunch covered with small bruises. They were caused from the injections of blood thinner and insulin, all taken to chase the side effects from the dozens of pills he takes. “So many complications,” he said. He was taking two different kinds of pills, for side effects and pain, and for side effects of the pain meds, and on and on.
“I’ve never been in pain like this.”
“They are killing him with all these treatments.” Cathy turned to me, her voice rising. It’s harder for him than most, she said, because the last thing he wants to do is to be told what to do, even taking pill after pill at certain times.
“I tend to like to wing it, to be a wheeler-dealer,” he said. He acknowledged he should’ve been better about taking his treatment regimen in the past. “I was kind of a ding-dong.”
The next day, we were supposed to take Jason to the hospital to get a dose of nivolumab and have the lesion in his back evaluated to see if it was responding. As we got ready, the exchange between mother and son was priceless.
“Jason,” Cathy said, “there are some things I want to ask the doctor.”
Jason’s face and body strained with tension. It was as if he were holding himself back on a debate stage, trying not to explode. Finally he exploded. “Ma, you’re not a doctor. This is not about you.”
“I know that, Jason. I’m not going to challenge them. I just want to ask some questions.”
“You’re not going to challenge them, Ma!”
“Fuck you, you’re goddamn right I’m going to challenge them!”
Just as fast as the tension had erupted, it dissipated. “I’m going out to have a smoke.”
“Good idea, Ma, have a nice smoke.”
An hour later, we lifted Jason from the chair. He put his hand in mine and we walked down the stairs and I scooted him into my rental car.
At the hospital, Cathy tried to keep her cool, but it was all so damn confusing. Dr. Brunvand told them that the scans of Jason’s back showed that the lesion “probably represents cancer.” He thought it might explain a compression fracture in Jason’s back, caused by the treatment.
The day the author brought Jason to the hospital in the spring of 2016. It would not be the relatively routine visit they’d hoped for. (Nick Cote/New York Times)
It wasn’t altogether impossible, though, that Jason’s back had fallen apart, like brittle wood, owing to years of steroids and chemotherapy weakening the bone structure. Dr. Brunvand thought it better to be safe than sorry and continue to treat for cancer. Jason had tears in his eyes.
“You’re an animal,” Dr. Brunvand told him, “not a sloth, but a tiger.”
Jason’s pain was so bad that they admitted him to the hospital for an MRI with a high-resolution imaging of the cancer and the bones involved, as well as to administer a spinal tap to deliver chemo into the spinal column and diagnose whether cancer was growing in the fluid around the column and the brain.
The next day, Jason sounded upbeat. “There appears to be little or no cancer in the spinal fluid. The cancer is very minimal or fading out.”
Next came back surgery to repair his compression fracture.
“The news was just so great. It’s incredible news,” he said. “Dude, I have another chance.”
I started to have nagging doubts. Did Jason have cancer for sure, or had his back collapsed as a side effect of something else? Dr. Brunvand told me that all signs pointed to a high likelihood of some relapse, but it was minimal and treatable. It was the malignancy, the oncologist felt strongly, that had caused the back to fracture.
Either way, Jason’s body—the festival inside the wind-wracked tent of his life—was way out of balance. Now, having learned so much about the immune system, I understood how his body, kept alive by all the medicines, was trying to compensate and overcompensate. I was having trouble seeing how Jason could find balance again. But he was sure that one more back surgery would do it, and he’d be on his feet again. He would fight on. The plan was to keep him in the hospital through the surgery and rehab.
Over the next few weeks, we talked a few times and exchanged voice mails.
5/28/16: “Hey, Matt, this is J. Sorry didn’t return or answer calls you’ve given. This thing is really fucked up and rough in the hospital . . . But my spine healed really well. I really need to get strength back to the point where I can walk and that’s it and I’ll be out of here, and that’s kind of where I’m at. I can’t believe my legs are so weak like they are, but I’m building strength day by day. That’s what I’m doing. I hope you’re doing well.”
6/1/16: “Hey, Matt, it’s Greenie. I just wanted to tell you I got some great news today. I got the results from the PET scan. It came back totally clean! No Hodgkin’s in my whole body. So it’s amazing, anyway, great news. Now I gotta get out of here—hoping in two or three weeks, that’s what I’m thinking.”
In late June, crisis. Jason was having trouble breathing. He didn’t want to eat. The nurse gave him another pill, this for a panic attack, but he still wasn’t eating. They put in a feeding tube. He became unresponsive. It wasn’t making a lot of sense to Dr. Brunvand, who initially noted, “His counts look perfect, and his CT scan is completely unremarkable.”
Prior to becoming unresponsive, Jason had mentioned to Beth that he was giving up and wanted to die. He couldn’t stand the pain and the endless hospital stays. “He has every reason to be depressed. But I’d like to get him through this. I don’t see any reason he should die. I’d like not to throw in the towel just yet,” Dr. Brunvand told me.
He thought Jason was showing signs of emotional distress. As more test results came back, Dr. Brunvand thought he understood the problem. The tests were showing that Jason was experiencing a spike in inflammation, a version of a cytokine storm. “A hallmark,” Dr. Brunvand told me of “toxicity after nivolumab.”
The inflammation, he theorized, was impairing Jason’s brain function. It was a kind of coma, Dr. Brunvand told the family. They gave him steroids to slow the storm. “Let’s see if this reverses and he wakes up and smiles.”
He awoke three days later. He just popped awake and wanted dinner. When I got the call, I jumped up from my desk and sobbed with joy. “He’s alive, Meredith. He’s alive!”
He was still there in July, dealing with one complication or another. I was in Colorado and dropped in at the hospital on July 27. Jason was weak and tired. He left a message the next day: “Hey,
Rick, how you doing, it’s Greenie. Listen, man, I wanted to say thank you for visiting and hope you had a good trip here. Sorry I was kind of out of it that day—it’s weird—it ebbs and flows, but overall I’m great. I’ve got a liver biopsy today and then dialysis, so it’s kind of a scary day, but I’m coming back, dude. So we’ll see, man, if I can climb out. Anyway, I love you, and thanks for coming.”
His biopsy came back negative for cancer but suggested he could be experiencing liver failure. After his liver biopsy Jason bled about twenty units of blood around the biopsy site; he went back into surgery to have the bleeding stopped. The threats came at every turn.
Organ failure is another sign that the immune system is attacking the body, although this was not necessarily a side effect of the cancer treatment. It could have been lots of things. Jason was told he would need to spend the rest of his life on dialysis as a best-case scenario, or he would die of organ failure before he ever left the hospital.
This news was too much for Jason. Already in desperate pain, stuck in a hospital bed, now the ultimate dreamer and pioneering soul was being told he would be a patient forevermore. That’s how he saw it, at least.
“I’m done,” Jason told the psychologist who delivered him his prognosis. “I gave it as good a try as anyone could.”
53
Jason’s Way
On August 10, the day after Jason declared himself finished, Meredith and I visited the hospital, unsure which Jason we’d meet. We saw the one who really had had enough. He was mostly unresponsive, his head back, mouth open. His mom sat at the foot of the bed and Beth sat next to him, brushing his brow.
I retold Jason some of our stories from the glory days, as if he could hear, and we all tried to laugh.
The nurse gave Jason morphine. He calmed. There was talk that he could last a few days. Cathy went to grab a quick bite.
“This is it,” my wife suddenly said. Jason’s breathing had become particularly labored, a pattern Meredith, a doctor, well understood.
Beth wiped the hair from his forehead and kissed him there. “Goodbye, my sweet love,” she said.
Jason took a final gulp of life.
Determined as he was in life, he made up his mind, and off he went. It stood to reason he’d picked that moment so his mother, champion and stalwart, wouldn’t have to bear witness.
A few minutes later, in the emotional and medical vacuum, I found myself standing alone at Jason’s bed, looking at someone who had never been inert in his fifty years.
“Love you, Greenie,” I told him. “I want to thank you for never looking down on the little guy. I hope my son can carry himself with that same dignity and class.”
Jason’s memorial service, a few days later, was powerful and sad and funny. I eulogized him and told a story about how he and Tom had once driven during college from Boulder to Berkeley in the Volkswagen Beetle Jason had inherited from his dad. Jason and Tom had blown most of their money by Wyoming, when the Bug threw a rod and they had to hire a mechanic to save the car. By Reno, they had only $50 and were low on gas. Jason decided the best thing to do was to . . . attempt to double their money in a casino. They lost most of the remaining $50 playing blackjack, slept in the car, and used their last $5 on Cool Ranch Doritos. They made it to Berkeley on fumes in time for the kickoff of a football game. I described Jason as a guy who went farther on a single tank of gas than anyone I’d ever met. I said I imagined that Jason was in that Bug up in the sky now, driving away, maybe in the direction of his dad, Joel, who was waiting in the heavens, wearing his ratty brown catcher’s mitt.
I wrote an obituary for the New York Times to update the story I’d previously written about Jason’s saga describing the potential hope for immunotherapy. After all, it had given Jason an extra year.
But what was the sum of it all, now that Jason was dead?
54
The Meanings of Life
Who do I think I am, titling a chapter “The Meanings of Life”?
This is not a typo, either. I emphasize meanings, plural.
I’m not so audacious as to think I can distill it all into a single meaning of life.
But I can say with a straight face that I have a decent idea of several of life’s essential attributes, as seen through the lens of the immune system. This network is so central to our being, our survival, that its inner workings offer elegant lessons for living better, even living longer.
Each of these lessons comes from understanding what makes the immune system so effective. It is eons old, honed and polished by evolution, and so, by definition, very good at what it does.
First, everything is connected. Cancer, autoimmunity, HIV, the common cold, allergy. The immune system, our elegant defense, is the river that runs through every aspect of health and wellness. It tends to the festival of our lives, and it does so by seeking balance and harmony.
It seeks peace with its surrounding environment. This is a far different idea from the one I began with when I started to learn about the immune system and assumed—as I suspect many people do—that its chief jobs are to defend and attack. Defend, yes; attack, not necessarily. In fact, the immune system is constantly seeking to maintain harmony, not just by limiting its attacks to all but the most necessary ones, but also by cooperating with the organisms that surround and invade it. At its core, it tries to discern self from other, but having done so, it doesn’t just destroy what is alien.
It has made allies of the bacteria that thrive within it, and the bacteria have made an ally of the host. In fact, if our immune system had gone to war with each organism it deemed as different, the species would not have survived. For us to have a fully effective immune system, we need regular engagement with bacteria in our environment and in our gut.
This realization adds a profound level of nuance to the idea of what self is, and what other is. What is alien, what is foe, what is ally, what is partner?
This teaches us clearly that our survival, as individuals and a species, is best served by cooperation. This may sound obvious, but civilization, even of late, has been dominated by the push and pull of our competing instincts to cooperate and alienate, to see what people share in common or prey on what divides them. The lesson of the immune system is that the better able we are to find common ground, the more allies and weapons we have to contend with a greater, common foe.
This is a powerful argument too for diversity. The more diverse our genetic tool kit, the more options and ideas we have to enable our common survival. Bob Hoff was the ultimate outcast, a gay man in Des Moines. He is not someone to be castigated as different, though, but to be embraced as a genetic and cultural ally, a brother, an essential part of our common survival.
The scientists from other countries created the foundation of learning that became the medicines that forestalled Jason’s death, helped Linda, and that may yet come from Bob’s contributions. If we learn together and cooperate, we can tackle autoimmunity and cancer and Alzheimer’s, and who knows what other seemingly impossible foes.
Conflict has its inevitable place. Societies and people will collide, just as at times our immune system must play a vigorous defense. But the immune system cautions us to take the least destructive path possible to a livable balance. When we don’t cooperate, when we err too easily on the side of war—literal and proverbial, physical and verbal, armed and political—we emulate one of the most self-destructive of our traits: an overheated defense system. In fact, among the biggest misconceptions that I took into this book was that it is better to have a superpowered immune system. The advertisements are everywhere urging “Boost your immunity!”
Wrong.
Dr. Fauci, one of the leading scientific lights in the world, said that when he hears ads promising to boost your immune system, “it almost makes me chuckle. First of all, it is assuming your immune system needs boosting, which it very likely doesn’t. If you do successfully boost your immune system, you might boost it to do something bad. Even with the very dramatic pos
itive results we’re getting from immune therapy with cancers, we’re looking at clinical trials with very, very toxic side effects. It doesn’t just suppress the cancer but puts in a bunch of things that put system out of whack.”
Some of the most devastating chronic deadly conditions in the festival that is our life arise when this system goes even a touch out of control. Fatigue, fever, stomach issues, rashes, organ failure, flooding of the lungs, and on and on. These effects are so devastating that it is difficult at some points to know the difference in the effects between pathogen and inflammation. Sometimes these effects are actual autoimmune disorders. Other times, they are episodes of overheating, the fatigue and acne and sores and leaky-gut-prompted stomach issues that kick in when our elegant defense turns into a police state.
The immune system teaches us to err on the side of cooperation and acceptance.
It is true too on the other side of the equation. If you suppress your immune system deliberately, through medication, it can mean trouble. Dr. Fauci has never treated Merredith Branscombe—the woman whose autoimmunity remains elusive—but I talked about her situation with him and he was sympathetic to her quandary. The mechanisms behind autoimmunity, for as much as we’ve learned, remain murky, even as the monoclonal antibody treatments have become more precise.
“Generally, you have to give broadly nonspecific suppressors of the immune system,” Dr. Fauci said. “It comes with absolutely inevitable toxicities.”
There’s a significant lesson here for society. In our quest to build a perfect and efficient world, we have overcorrected.
As I noted earlier, it’s hard to name a single profound innovation that hasn’t had extraordinary side effects. When cars hit the scene, we had much greater freedom of movement and incredible new efficiencies, and also crash-related deaths soared; driving is now the single most dangerous thing most people will do today.