by Jason Good
Stanford plays their patient confidentiality cards pretty close to their vest, but if my sense of the situation is correct and you’re able to pull off another remission, they will have found you a younger donor by then.
Wherever this ultimately ends, there is certainly no lack of love coming from me, and I am looking forward to a future, which holds more hope than fear.
From my heart to you,
Paul
Just like that, I learn it’s possible to disagree with someone and still respect them. Life is easier when you can write people off. It’s work to have friends with differing opinions—valuable, sure, but also a pain in the ass. People can grow apart, be fundamentally different, and still remain close, like old friends. Like brothers.
I understand now that Paul was in an impossible spot, similar to Dad’s. Though he wasn’t risking death, the dilemma was the same. He was on a ledge, too. Behind him was the villainous disease threatening to kill his brother. Below him, the uncertainty of a transplant, something he considered voodoo science, a toe in the ritual stew. He stalled on that ledge, waiting, hoping, looking behind him, then down, then back and down again. In the last minute, he was rescued. Dad, on the other hand, will have to jump.
Footnotes
Chipping away the January ice with a garden hoe so the neighborhood kids don’t have to summit a graying mountain of winter effluvium on their way to school, I get a text from Dad:
Dad
Just got off the phone with Dr. The news is bad. Call me.
The onslaught of toxins still hadn’t killed Dad’s cancer—that fucking cockroach, tiptoeing through the postapocalyptic shell of his insides. Now that he has failed intensive chemotherapy, his leukemia is “refractory,” a high-risk subtype that is stubborn and unresponsive to treatment.
Dr. Levine says that, while some options remain, all of them are long shots, and the likelihood that Dad will die from an infection outweighs the “single-digit percentage” that any heroic measures will result in a sustainable, transplant-worthy remission. “We’re looking at months now,” he says. Dr. Levine suggests that the next step should be palliative care: transfusions, and timid, less-risky medications aimed not at a cure, but rather at improving the quality of the time that remains.
Dad is torn between his faith in science and deference for his doctor. This is the first time they haven’t been in agreement; Dad wants to keep trying for a cure. I don’t want him to give up and do nothing (which is arguably doing something), but I fear bearing any responsibility for a decision that could cause him misery in his final months.
A morbid longing for the worst-case scenario leads me back to the Internet: an “off ” switch for hope. I learn that treatment of refractory AML is considered “salvage therapy,” a last-ditch effort to scavenge the footnotes of medicine. Let me see if I have something in the shed out back that can fix you. For obvious reasons, doctors don’t use the word “salvage” with patients. It’s something found only in medical journals, and, unfortunately, Google’s algorithm does not include a variable called “user_is_better_off_not_knowing.”
I text Dad’s ex-student Doug the news. He responds quickly.
Doug
OK, so what’s the next step?
Jason
I don’t think there is one, at least not in my dad’s opinion or those of his doctor.
Doug
What about a trial? I thought the doc said something about that before.
Jason
Levine tends to be a downer and my Dad is feeling depressed about all this.
Dad is not stubborn. Not anymore. He listens to me. He shouldn’t, but he does. I’m glad Doug’s stance on this is strong. His refusal to accept the lack of curative options infuses me with enough confidence to stumble my way through a phone call with Dad.
“Jace, you’re the expert here. What should I do?” he asks.
“I’m not an expert.”
He doesn’t believe I am, but he knows that complimenting me will boost my confidence and make me more forthcoming. We use this trick on each other all the time. We’re both cognizant of when the other is employing it, and neither of us cares.
“Well, you know more than I do,” he says.
“None of the science matters,” I say. “You have to decide what you want.”
“I want those boys to have a grandpa,” he says.
“Me, too. So there’s really only one option.”
Dad is fully capable of drawing a straight line between two points. The man knows how to install a toilet flusher. He’s read Das Kapital—all of it—multiple times. Who the hell does that? Clearly, he knows that to be cured, he will have to take this bet. He doesn’t need an expert. He needs someone to tell him it can work, and even if it doesn’t, that he’s doing the right thing.
An hour later, he texts me:
Dad
You have convinced me. I will not go gentle into that good night.
Jason
Goddamn right.
Dad
Thanks for not letting me give up.
Dad chose long ago to fight this, and though he is losing, there’s always a chance, however slight, that one lucky, flailing punch will land squarely on his opponent’s chin. I share his doubt, but it’s my job to massage his shoulders, offer him sips of water, rub that weird jelly shit on his cheekbones, and spank him on the ass.
But Dad is tired, emotionally drained, and so am I. A heart attack, stroke, parachute failure: something devoid of all these peaks and valleys might have been easier. Had this been an event, Dad would have been dead for over a year by then, and we would have started the process of moving on. Or I would be on lithium. Or I’m naïve and terrible at predicting things. My point is, I would be somewhere. Chipping all this ice and feeling proud that I transformed a mountain into an icy knoll only reminds me of what little progress I’ve made toward accepting the specter of Dad’s mortality. Wouldn’t it have been easier for all of us to skip this part and go straight to accepting that he’s gone?
Clinical trials are more or less experiments, conducted only at teaching hospitals. Stanford is the best in the Bay Area. I have been scanning the government databases, looking for new fancy stuff Dad can try, but find it hard to discern whether some wacky combination of traditional chemo and cholesterol-lowering drugs might work for him, or if he would even be a candidate. Like prep schools, one must apply, interview, and be accepted to a clinical trial. Rather than tests of knowledge and achievement, applicants are selected based on their likelihood to survive.
After Dad makes contact with a researcher at Stanford, Doug flies his airplane to Palo Alto to attend the meeting with him. He records the conversation and emails it to me. The principle investigator of the trial concurs with Dr. Levine: any treatment at this point is a long shot. But he seems eager to include Dad. Maybe a little too eager, like a college booster wooing a high school basketball phenom. Of course, their intentions are pure: they want to help people, and they need patients who are out of options. Still, the phrase “recruiting volunteers” leaves us feeling a bit Tuskegee Airmen about the whole thing. But thinking his only other choice is going gently into that good night, Dad agrees to enter the trial.
For insurance purposes, he has to obtain Dr. Levine’s approval. When Dad contacts him, he acts as if we’d called his bluff. He tells Dad not to do the trial, that it seems “far-fetched,” and says that if Dad insists on further treatment, there’s something more established he can try. There is, as it turns out, a protocol for “salvage chemotherapy” located in the main text of medical science, not in the footnotes.
Despite the fact that Dad’s first round of intensive chemotherapy was unsuccessful, he still made his way through without so much as running a fever. Why not try again by adding a newer chemotherapy drug and increasing the doses of the others? No matter how stubborn his leukemia, it has to respond to something.
Dr. Levine schedules Dad to go in the next day for a new treatment. I offer to come
out, but since he’s been through it once before, Dad knows the drill and encourages me to stay home with my family. “We can FaceTime four times a day if we want,” he says. “Plus, Mom and Doug will be nearby to come visit.”
Lindsay expresses concern about how I might react should something go wrong. She looks at me sternly. “I just want to make sure that if you get a phone call from your mom telling you that your dad is about to die, that you’ll be okay with not having been there.”
“Hell no, I won’t be okay with that. I’m only four hours away. If there’s an emergency, I can catch the next flight out.”
“Right,” she says, unconvinced. “Just don’t stay here because of me. I’ll be fine here by myself with the kids.”
“I know. I’ll be fine. He’ll be fine. Honestly, I think he doesn’t want this whole thing to take over my life anymore.”
In fact, I’d been having a difficult time. My mental state had become too dependent on Dad’s condition, and distance, as odd as it feels to us, is probably the best thing. And it took some distance, both physical and emotional, for Dad and me realize that our circumstances may have control over what we do, but they do not dictate how we feel or what we talk about. Letting go of the idea that somehow we can control the future enables us to appreciate our time in a manner that isn’t structured by a morbid fascination with his illness or the jelly-beaned hope that it will disappear.
Jason
You nervous?
Dad
Not so much. It’s an either/or situation and I know pretty much what to expect in either case.
Jason
Same here. Oddly calm about it.
Dad
I think we might have both exhausted our anxiety for a time.
How’s everyone there in the cold land?
Jason
40 degrees here today! I’m wearing just a fleece.
Dad
Snow all gone?
Jason
Oh God no.
Dad
What are you guys doing today?
Jason
Silas and I are bowling.
Dad
That’s adorable.
Dad is ready to start moving on, to stop talking incessantly about his disease and treatment, but I’m not quite there yet. Later that night, while feeling powerless and without anything specific to worry about, I turn to my trusted enabler: the Internet. I discover that the most common source of infection while receiving chemo doesn’t come from the outside environment—or even from inside the hospital via an errant hack from a neighboring patient with tuberculosis—it comes from the bacteria and viruses already living inside our bodies. I was unaware that each of us walks around in a constant state of fighting ourselves, that our healthy immune systems are always shooing away the gnats of disease. Finally, an answer as to why I’m so tired all the time.
The next morning at around 8 AM, as I cut the crusts off a peanut-butter-and-honey sandwich for Silas’s lunch, and Lindsay explains to Arlo why he can’t put paprika on his bowl of Puffins, I get a text from Mom:
Mom
OK, now don’t panic.
Luckily, my brain was running dangerously low on panic juice.
Jason
What’s going on?
Mom
Dad has what they think is tonsillitis. He’s OK, but here’s the number of the doctor on staff if you want to talk to her . . .
Jason
I’ll call and let you know what I find out.
Mom knows I will want more details than she can provide. Having been at this for over a year, we try not to speculate anymore. The circular Q&As always end with Dad saying, “Well, none of us know what the hell we’re talking about here, do we?”
I talk to doctors the same way I talk to the “geniuses” at the Apple store. I want answers, but I also want to show them that I’m smart and fluent in their language. “Well, I updated to the latest firmware, then did a full restore, and I’m still having the problem. I’d say it’s a hardware rather than a software issue, right?” With doctors, I like to think that my history as a hypochondriac provides me with at least an honorary medical degree. I also don’t like wasting their time. But most of all, when I call the hospital, I don’t want to hear the “What cancer is” or “How the immune system works” speeches again.
After spraying my hose of armchair oncology on the doctor—one that probably sounds to her like a person speaking French for the first time after spending a month with Rosetta Stone—she tells me not to worry. “This is common,” she says. “Almost everyone going through this kind of treatment gets an infection at some point. Compared to all the other things your father could have contracted, this is tame. And he’s already responding to the antibiotics.”
I am still breathing heavily in anticipation of some sweet follow-up questions, but can’t think of any. She aced her response, and all I can muster is “Thank you very much” and “It was nice of you to take the time to talk to me.” I imagine her smirking. No, she isn’t thinking about me at all.
I call Dad to let him know what I found. It is still heroic to him that I talk to physicians on the telephone, and I need an ego boost.
“Hewwo?” The voice on the other end is husky and muddled like a career smoker with an enlarged tongue.
“Dad?”
“Hey, Dace.”
“Jesus, you sound like Mickey Rourke.”
I can barely understand him, but am able to gather that his throat was nearly swollen shut and the nurses had given him morphine for the pain. That’s two strikes against speaking clearly.
He emails me thirty minutes later, saying he feels better than he sounds and that if the doctors aren’t worried, I shouldn’t be.
A few minutes later, Doug texts me.
Doug
I texted your dad and he never got back to me. Everything OK?
I tell him about the infection, which he takes in stride. Doug’s good at not worrying about things that shouldn’t worry him. A hippie turned entrepreneur, he’s also adept at ignoring troubling issues, but that’s not the case here. We continue texting, and become a bit wistful. We decided that when Dad’s time comes, we will pool funds (mostly his) to rename Elliot Hall (the old colonial that’s home to the Politics and Government Department at Ohio Wesleyan) after Dad: “Good Hall” or “The Michael Good School of Politics.” Neither has a ring to it, but such is the fate of having an adjective for a last name.
I always wanted a big brother, and though Doug never shows up for Christmas, doesn’t call regularly, and wasn’t present during my childhood, he loves my dad. By extension, I imagine he loves me, too. I tell him that he’s “like my big brother now.” “Cool,” he responds. “I never liked being the youngest anyway.” It’s the perfect masculine response: a funny but unsweetened confirmation of a shared emotion.
Thinking it might brighten him, I tell Dad of our plans to rename Elliot Hall. I should have known that he would have no interest.
“That’s sweet, but also a tremendous waste of money,” he says.
“Then we’ll do it for us.”
“If that’s what you want.”
It’s difficult to accept that the world continues after you die. I’m sure Dad doesn’t want to talk about how things might be when he’s gone. I thought I was being altruistic and loving, but realized it was nothing more than a projection of my own coping. He’d already made his wishes clear: “I won’t want or need anything when I’m dead.” No funeral, no sprinkling of his ashes from the Palazzo Vecchio, no token of his legacy at Ohio Wesleyan. He has never wavered in that, but how can he be so sure?
The morning after our casino win in Egypt in 1992, we visited the Valley of the Kings. With our little tourist map of the ancient burial grounds in hand, we wandered from tomb to tomb. The pharaohs were unanimous: dead people need shit—some myrrh, maybe a statue missing half its face, perhaps a listless cat. I was twenty (a deceptively impressionable age) and for the subsequent two years I wore an ank
h around my neck. Not only did I think it was a hilarious addition to my six-inch-long goatee, it was also a little insurance policy in case the Egyptians were on to something. When it’s my time to die, I’ll probably request that Silas and Arlo put a boat next to my urn, in case I have a long journey down the River Styx ahead of me. Like Dad says about prayer, it can’t hurt.
Humankind has come a long way in five thousand years. Contemporary spirituality suggests that upon death, the energy of the soul transfers to other organisms. In your body right now—yes, right this very moment—are atoms and molecules that were once inside Thomas Jefferson, or a mastodon, perhaps a lonely sycamore tree, or any millions of random organic things, including Genghis Khan. Cool thought, but who cares, really? What does that leave for us survivors? A fern can’t make me laugh. Most horses can’t tell me I’m full of shit. And no other human being can imitate an old Jewish man saying “celery” quite like Dad.
Hinterland
“Do you have a sword?”
“Huh?” I answer, busy searching for a torch on the other half of the screen.
“Do. You. Have. A. Sword.” I think Silas wants a sword. He’s become far better at this video game than I.
“Oh yeah, I have one. Sorry, I was over in that cage trying to find a torch.”
“We don’t need a torch,” he says, incredulous. What kind of rube would look for a torch in this situation? I like it when my six-year-old son treats me like an idiot.
“Come over here so we can use the cannon,” he says.
“Okay, boss. I’m coming. Wait, where are you?”
“Over here.”
“Where?”
“Whatever. Can I just be you?”
“Sure.” I switch controllers with him.
He inserts the sword into a slot to activate the cannon. His half of the screen zooms in to show the target. He aims at the opposing ship. We have to hit it three times, I think.
“There. Right there!” I shout.
He fires. “Yes!”
