Ten years ago, my son was not a 5th-grader but just a happy baby. My first novel was a mistake-ridden mess (I had to become a dad to do the story justice, I later realized). It was before I re-discovered soccer. (The “training” I had as a kid ended in grade school. With twenty years’ lapse before playing again, it’s little wonder I suck at it.) I was thirty years old. I had yet to run my first and only full marathon (inspired by Eric) but was still feeling pretty invincible. I’d done ten-mile runs in the rain (on my own) and had conquered the notorious Mailbox Peak with friends. The overweight shy weakling I’d been in the past was sufficiently buried in the past. Death was something that happens to grandparents, other people (car accidents, gun violence, war). Yup, I was a lucky American who’d lived a charmed life. Who could blame me for having only positive thoughts–Eric would beat this, and the adventure in Boston would become something we could reminisce about in decades to come. “Remember how I couldn’t eat…”
In fact, I was feeling so so so positive that I’d tricked or deluded myself in not believing a negative outcome was his fate. Possible, of course…but it wouldn’t happen to Eric. For one, he was likewise invincible. He grew up in Tuscon where, among other activities, he ran cross-country in the desert (it is a desert) in 110 degrees. They didn’t even have water-utility belts back then. After that, marathons on paved roads in 75 degrees must’ve seemed easy. He skied with laughable ease (his tracks often horrifying Luanne, spotting them from a chairlift). During his lunch break at Hampshire, he’d go swim a mile or two before returning to his students. He got his kayak out whenever time and family duties permitted.
There was also this karma thing I had in mind. Eric’s mother and father did not have a sunny relationship. Luanne’s first memories, she tells me, are of being woken by her parents screaming at each other in the kitchen. He was an anxiety-riddled workaholic cardiologist. If you lived in southern Arizona and you had a problem with your ticker, you went to see Dr. Lee Schocket.
The family was pretty much cut off from the older generation (for reasons I won’t get into, here). So they didn’t have much of a support network when Lee was killed in a car accident in 1980. The kids were fourteen and eleven. One of Eric’s grandfathers had died from multiple myeloma (I know nothing of their relationship) years before. Then his mother survived a nasty bout of breast cancer in the early nineties, and his sister (Luanne) seemed to have a penchant for surviving horrible car accidents (three of them) without serious injury.
Add to that a certain amount of bigotry based on their being Jewish (though non-practicing) in the 1970s and 80s, and, well, didn’t the universe kinda owe this family a break?
One of the god-awful side-effects of Eric’s chemotherapy was the constant triggering of some gag reflex in his throat. His bland food options were limited as it was (and it was hospital food). With his not being able to swallow half of it, and his being kept up half the night with hiccupping, I don’t know how he didn’t waste away and go batty. His fortitude was a hell-of-a-lot stronger than mine. The gagging and hiccupping continued to be a problem for weeks, perhaps due to the Gleevec (or the more-potent version someone in our circle tabbed Super Gleevec). It seems like it was new, and therefore experimental. According to Luanne, regardless of trials and government approval, any new medicine can be considered experimental until you have years of patient experience and reaction to weigh. But we didn’t have years. This had to happen now.
[To put this into contemporary terms, and non-medical terms, let’s pick an example like Clash of Clans. You’ve got this kick-ass town independent of any clan. Level 10 town hall, level 8 mortars and cannons, double-layer purple crystal walls, dragons in your camps, testy Barbarian King roaming your city. The gold and dark elixir are coming up faster than an office of accountants could measure, and the wizards on their towers are scowling for lack of anyone to fry. Then someone shoots an arrow message into your clan castle window: All your gold is rotten. The elixir, too. And everything you’ve built with it. You need new gold mines (level 1) and elixir pumps (something less than level 1). To make room for them, everything has to go up in flames. You’ve got to relocate downhill in the same green pasture, within sight of your old kingdom, whose conflagration lights the night. Your new town hall is a bedroll. You have no cannons, no wizard towers, no troops. Other clans couldn’t donate money and men even if they wanted to. And, instead of impenetrable crystal walls, you’ve got a couple wood posts to protect against the Hog Riders and P.E.K.K.A.s which naturally roam the pretty land.] Not exactly a piece cake.
This is what tens of thousands of Americans deal with every year. Many of them don’t make it to the bone-marrow transplant phase.
My mother-in-law, Eve, had joined us shortly in the next room at our hotel. Alison was there as much as she could be, but she needed to get home (three hours away) to the kids. Her mother, Bonnie (who will forever be known as a saint in our family) was taking care of the kids, ages seven and four, full-time.
At the time, the top two places for a bone-marrow transplant were Brigham and Women’s (served by Harvard Medical School) and Fred Hutch (ironically, just five miles from our house in Seattle). With plenty of time to talk about nothing in particular (definitely not any what will happen thoughts) Luanne and I wondered how his treatment might be different at the Hutch. I’ve heard this discussing of alternatives during a medical crisis is very common. Different paths aren’t necessarily better or worse, just different. Of course, if Eric had come to Seattle for the treatment, the disruption to his family would’ve been even greater.
Our days took on a kind of routine centered on the periods of eating and sleep. The hotel “suite” was actually a regular room with a sitting area separated by a four-foot section of drywall. (I’m sure there’s a company euphemism for this thing.) So C., in a (scary) white metal crib, was happy we never left his sight. But it meant we also couldn’t watch TV or read (the light) after 9 pm. So we were kinda forced to get an unusual amount of sleep. (We had silly thoughts of storing it up so we could project it onto our family member who wasn’t getting sleep. It didn’t work.) In the morning, I’d sometimes sneak out to scribble some random thoughts (I might’ve been working on a fantasy screenplay, though someone could attach three different ‘why’s to that one). The hotel offered a real breakfast buffet every morning–they get props for that, and it makes up for the indoor pool not being open. We’d feed and play with C., and Luanne would get some paperwork done. Around 11, we’d catch the courtesy shuttle to the hospital.
[It was still pretty cold to have our son in a stroller. His Graco bucket seat was, I’m convinced, one of the best-designed inventions on earth. In three weeks, I bet I carried him 20 miles.]
At the hospital, we’d walk by Au Bon Pain (soon to be referred to as The Pain) and memorial plaques and take the elevator up to the fifth floor. There, we’d set up in the small waiting lounge. I only mention this because it’s where I’d spend huge amounts of time during our stay. The room was about 20 feet square and dimly lit with comfy chairs and couches. The low-volume TV up in one corner carried two channels of soaps and Sally Jesse Raphael. In other words, BMT ward staff had declared this room was for sleeping only. It was also very quiet up there–almost the opposite of an airport. Since Eric was only allowed two visitors at a time, and C., wasn’t allowed in, I got to know this room pretty well. Fortunately, C. was content to roll around with a couple chew-toys and rattles, or just sleep. We hit the lottery with that kid.
In Eric’s room, we talked a lot about nothing in particular. Music, good movies, different philosophies in life. In retrospect, it seems like we specifically avoided death, the afterlife, other diseases. It feels like a good policy: Don’t talk about plane crashes while your craft is still in the air.
There were also a lot of times of not talking. One of the lingering images is of Eric shuffling to the bathroom with his IV pole, long tubes crossing the floor of his room. Chemo really wallops your system. He also had a PICC line (peripherally inserted central catheter) with three ports. So, like Tony Stark in “Iron Man” (a movie he probably would’ve liked for it’s overarching message) he had a cool life-saving device in his chest. Unlike the movie/comic books, this wasn’t fiction. No snazzy music, no enemies to outwit.
We typically visited twice per day and occupied ourselves at night, as Eric was too exhausted by that point. Being really sick is like a cruel Venn diagram. His waking/lucid hours in one circle, the normal world’s waking hours in another, and his circle largely (and unfairly) overlapped by a circle we’ll call misery. Much of the music and reading he brought was, he said, to simply distract him from being miserable. Eric wasn’t someone who’d wish to share his sorrows with anyone, but his smiles and laughter were pretty rare in those days. He looked understandably punch-drunk, all the time. Showing us the door would’ve been completely forgivable.
To serve several purposes (including not going stir crazy) we hit restaurants for dinner. Along with Japanese, Thai and Russian, we also frequented Zaftig’s Jewish deli. Kick-ass Reubens. We got a laugh out of the establishment’s name, since my mother-in-law said it means large breasts (in Yiddish?). A sense of humor is critical in times like this. We ate well because the three of us liked to eat well (C.’s opinion at seven months didn’t count much). We ate well to take our minds off things. It worked. At the super-crowded Legal Sea Foods in Copley Place, my mother-in-law provided two moments of hilarity. Like my own mother, she’s capable of…interesting behavior. When we reported the incident to Eric, he laughed.
I’m a bit naive and ignorant, I’ll admit. There are subjects I don’t understand because I haven’t studied them or spoken with the right people. And there are things I don’t understand. Things about the human condition, about history, about evolution–enough to fill a tome which would signify nothing. I, Justin A. Edison, don’t understand a lot!
The question on my mind in those days–walking C. around in a stroller (the weather warmed up and we bought one) or watching healthy people smoke their cigarettes, or when I’d jog west toward Boston College–was How. How had we, in America (and the rest of the world) come to this era of stunning technological advances and not found a cure for Eric’s disease? We’d eradicated polio. HIV and AIDS were, in 2006, largely a specter of the past. Was his condition too new, not shiny enough? If memory serves, the A.L.L. destroying his body had always been there in his cells, albeit in a lesser form. Something happens, a genetic switch is flipped (the ‘by whom’ seems to be a key question) and the cells go haywire. Even there in Boston, buoyed as I was by stupid optimism and surrounded by conditions and terms I didn’t understand, my mind latched onto peculiarities I wanted to ask about. From my time at the Seattle P-I, I knew leukemia seemed to strike adults in their mid- to late-thirties. Okay, why then?
Eventually, a sort of brick wall was thrown up in front of me. Even then, I could recognize my own shortcomings and naivety. I knew nothing of microbiology and pathology. Being able to name mitochondria as the cell’s power plant doesn’t make one an expert in anything. People had already asked themselves these questions countless times, and done it in proper settings. A fair percentage of the people in blue scrubs we saw every day had most likely, in fact, been working on beating cancer their whole adults lives.
This should’ve been a comforting thought. It wasn’t.
To be continued…