“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.
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.
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.
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.
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.
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…