VI.

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?

VII.

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.

VIII.

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.

IX.

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.

X.

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.

XI.

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…

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“Time will pass” is like a motto among the bereaved. To me, the calendar is no friend. I’m one of those fools for whom the passage of time seems freshly horrifying, as it all goes so quickly. From the time of being a bachelor to being attached, its velocity went up a gear. With child number one, up another gear (even with the fatigue of those early days). With child number two (sometimes by hope, in a type of survival mode) it went up two gears, and there’s certainly been another speed increase since then.

So it’s all a bit of a shock that I look at the calendar and see it’s March of 2016. Here in Seattle, the cherry trees are blooming, and many neighborhoods have peaceful splashes of pink. Other greenery is emerging, the weather’s getting a tad warmer (itself mocked, it seems, by violent spring storms). That whole coming-back-to-life thing, which, cliche or not, feels nice. (I saw three Marches in St. Paul, where Old Man Winter still had an iron grip and a raised middle finger. He’d laugh at any optimism stemming from March.) Yes, here and now, this is a time for optimism.

Ten years ago, it was such a time, too. Boston. Unknowns. A Holiday Inn, for as long as it took. Brigham and Women’s Hospital. Hope. Fingers crossed against this wicked alien thing which had dropped onto my wife’s family–her brother in particular. Eric.

I.

It began, like so many stories, with a phone call. I’m pretty sure the exact date was Sept. 29th, 2005. My wife and I had just had a son, C., and I mark his one-month birthday (or whatever it’s called) by his switching his night sleeping to day sleeping. That last morning I was required on night duty, I turned on CNN to pictures of New Orleans under water. (Right away, this felt like a gut-check for America. We couldn’t properly fund public education, we obviously couldn’t keep firearms out of the wrong hands. Now we couldn’t protect one of our beloved cities from Hurricane Katrina. And for the first time since the American Revolution, unless I’m mistake, other countries would be sending help to us.)

A month later, on a Thursday night after my wife had returned to work, we got a horrifying phone call no family wants to hear. Luanne’s only sibling, her older brother Eric, had been diagnosed with leukemia. Adult A.L.L. (acute lymphoblastic leukemia). A real bastard.

(If memory serves, the ‘child’ version of A.L.L. is usually cured, whereas the ‘adult’ is nastier.)

For whatever reason–genetics, bad luck, other mysteries–the cells in his body had begun a full-scale revolt at the age of 39. He and his wife, Alison, and their kids had just gone to Lake Tahoe for her brother’s wedding. Eric had been complaining of night sweats and head cold for a couple weeks. [Note to readers: DO NOT let night sweats go unexplained!] Then, in Tahoe, Eric and Alison and the new bride and groom were up dancing all night–quite a feat for a busy dad with a head cold. So he got it checked out. The spike in energy was, counter-intuitively, a sign of danger (according to Luanne). Cancer.

A few days after calling us, he reported more bad news: The presence of the so-called Philadelphia chromosome. Diagnostic medicine is full of all kinds of horrible things most of us have never heard of. I don’t think even Luanne (an OB-GYN who’s seen all kinds of medical train-wrecks) had heard of this one. Soon, of course, the literature was available. And the bottom fell out. With patients carrying the Philadelphia chromosome, the five-year survival rate was 1.5%. As in one-point-five, or fifteen out of a thousand.

II.

We did what anyone would do. We worried and paced. I think we prayed (though we’re both pretty much atheists). We told each other things we hoped were true. And we flew to Northampton as quickly as we could, in October. Eric had begun chemotherapy at Bay State Hospital, but he looked good, sort of. Tall and strong. At six feet, he was too tall for the stairs of his turn-of-the-century house (built with shorter human beings in mind). He’d already been shaving his head for years, I think, since he’d begun losing his hair around the age of thirty. (It was shaved two years prior, when we first met.) So this wasn’t a shock, and we all avoided what I’ve heard is a painful moment for cancer patients and family. But he looked tired, and groggy. The pre-diagnosis head cold he’d suffered had scrubbed his trip out to see us and his new nephew, C. So he was delighted to meet C., and hold him, and call him a “gentle soul.”

[So, C., when you read this, it was your uncle who first marked you as being a thoughtful, caring, altruistic sort of person–remember that.]

The only other thing I remember from that weekend trip was Eric and I taking a long walk near their house. A small part of me belongs (and longs for) New England, and Northampton, Mass. is a perfect example. Their house is blocks from Smith College and maybe a mile from a cool village center sporting a 17th-century courthouse. (Out here in Seattle, we hardly have anything that old.) With the autumn colors around, we followed a path that crossed the nearby Mill River and looped through woods near an old state hospital (brick and scarily abandoned, horror-film ready type). We talked politics, the erosion of the middle class, the benefits of cultural diversity.

Something that troubled him was how much of America had been priced out of the American dream. One reason he was not sorry to leave the Bay Area was it’s so incredibly expensive. You need two incomes just to make it, and one of those had to be in the upper brackets to think about even a townhouse. As a college professor, his salary was not upper-bracket. Then, working so hard to support a rent or mortgage, what do you do about family? Kids are not cheap, with infant daycare (at the time) easily topping $1200 per month. A second child effectively wipes out that all-important second income to pay for living. Plus, in his experience, both parents working out of the house (not available for a lot of parenting) is damaging for the kids. He had friends in San Francisco who had to choose between family and careers. How did this make sense?

All-in-all, it was cool to see we were on similar wavelengths of thinking and opinion.

Either during this trip or soon after, the lone course of treatment became clear: A bone-marrow transplant.

III.

The hard New England winter wasn’t easy. Stuff goes around, and two kids at home (quite honestly) means a lot more of it goes around. (Many times my wife and my sister-in-law have agreed, not unkindly, that kids are like rats in that respect.) It seems like Eric fought off a couple bouts of minor illness and had to deal with a diabetes issue. His body was what’s called immuno-compromised.

Leukemia and other blood cancers live in the blood, which makes their source bone marrow. Simply swapping out his entire blood supply or yanking organs (and I’m being horribly simplistic, here) won’t do the job. In his case, the chemotherapy’s job was to begin to wipe out his bone marrow so it could be replaced. The trick is, you don’t just run off to Target and get new stuff off the shelf. (Again, it’s much more complicated than I can articulate right now.) His name had gone on the national registry–literally, a life-saver for those on it. Finding a bone-marrow match is tricky for a number of reasons. Neither Luanne nor her mother were matches. Not myself or C. or Alison and the kids, or anyone else we knew who’d submitted. The term shot-in-the-dark went around several times.

In January, it seems, we got the news that a match had been found. Countless kind souls had signed up to add their blood data and name to the list of potential donors. One of them was a match in eleven of twelve criteria, which was amazing.

These things take time (the donor could’ve been halfway around the world, for all we knew) so we set our sights on mid-March.

IV.

For cost reasons, we didn’t rent a car when we flew into Logan International. We didn’t know the city well, we were kebobbled by Eric’s diagnosis and upcoming trial, and a car would be something else to worry about. Whatever the reason, we’d spend the next three weeks carrying and strolling and ferrying a seven-month-old who was outgrowing his bucket seat. So there was a bit of physical work added to the glacial pace of things (more on that in a bit).

When we got to the Holiday Inn Brookline and checked in, I didn’t take a look around and realize this place was going to be our home for three weeks. It was a weird thing for me to miss, as a writer. Maybe it was because everything seemed transitional. Also, I don’t recall recognizing that this trip was going to be a gateway of sorts–that life before and after would not be the same. In other words, the way I see that trip, now.

As with almost anything medical, there’s a lot of waiting. So we took the first of many courtesy hotel shuttles to Brigham and Women’s Hospital and met up with Eric and wife Alison, and he got checked in. This seemed to take half-a-day. (I’m sure I brought books and writing materials, but I can’t honestly remember anything I worked on in that time.) Sounds like he had to fill out more paperwork than for buying a house–tons of it. Fortunately, his stellar insurance through Hampshire College was picking up the tab for the whole thing. (I use stellar because, ten years ago, the cost for the whole BMT [bone marrow transplant] procedure was around $250k.)

It seems like, after checking in to his room (his temporary room) Eric wanted to get a nap. Maybe we headed back to our hotel for a nap for C., I can’t remember. That night, after a walk, we went to a nearby steakhouse for dinner. The food was so-so, but it stands out because Eric was savoring it. The chemotherapy and upcoming regimen would do a number on his system. From here on, it was to be select hospital food deemed acceptable by BMT protocol.

I realize, now, that this would be the last time Luanne or I saw him outside of a hospital setting.

V.

Things were generally positive and upbeat when the show started. Brigham and Women’s sits in a cluster of hospitals and facilities on the edge of urban areas. The place could be a maze, and it all had the feel of a slow-moving circus populated mostly by people in blue scrubs. They were there to do a mission (their job). We were there on a mission (to support Eric). Cue the dramatic music. Nope, cue the less-dramatic music, because this takes a while.

While Eric’s stuff was moved to his new home in the transplant ward, we got an education. All patients in the ward are immuno-compromised, so the place is as sterile as they can make it. The rooms have special negative-pressure fans, to suck out any pathogens through massive wall screens. Food and drink are not allowed. A baby is not allowed. Shoes are not allowed. You go through double doors, wash your hands at foot-pedal sinks and put on a mask, gloves and gown. This is the procedure, every single time. One glance at a patient and you get it. What happens in this small compartment of the world can determine if they live or die. Everything has a measured importance, and you find yourself walking on eggshells. In this case, if someone notices you being cautious, they don’t tell you to go ahead, be yourself, make noise. Hope is pinned to everything you can see and hear. The squeak of a cart wheel, the shuffle of papers, quiet voices on a phone.

For the show to start, Eric had to undergo some radiation blasting, as somebody put it. He was taken to a room with a Volkswagen Bug-sized machine whose service was delivered via bright blue light. Afterwards, keeping spirits up with humor, Alison said he looked a little cooked. He felt like he’d been left out on the beach too long.

Fortunately, humor runs deep on both sides of the family, particularly that one. We’d need every ounce of it. If Eric had taken the first step into hell, as they say, then this was the start of a very steep descent.

To be continued…

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