There were two notably funny moments during that time. At some point early on, Luanne and C. and I ventured up to the top floor of the ward. The elevator didn’t require special access to reach this floor, though that has probably since changed. The place was for, shall we say, those of a different tax bracket. The rumors of silver tray food service with linen napkins turned out to be true. If you have a ‘Sheikh’ in your name or you’re involved with a billion-dollar Silicon Valley firm, this is where you go. Convinced we were doing something wrong (about to get busted, yelled-at, or arrested) I made it only a hundred feet down the hall from the elevator. Luanne called me chicken, and wanted to go further. So, back on our floor, everyone got a laugh at my squeamishness. That’s okay.
The other funny moment involves a post-bottle belch from C., of which he’s quite proud. Alison was leaving, perhaps to visit the Pain, and I carried C. out into the hall to burp him. Fifty feet down the hall, Alison jumped when my son ripped off a beastly one. “What the hell was that?!”
I pointed, Kiddo beamed. C. trumps his cousins in the audible gasses category. (Years later, he’d be trumped in both volume and frequency by his infant sister.)
I hang onto these moments because, like everyone else, I need something positive to remember from experiences. Something harmless and funny, something that can’t be amended by a future.
A day of mini-celebration: The donor’s bone marrow cells arrived. Brought by medical courier, it seems like they were in two IV bags of pale amber liquid, and that Alison signed for them. (Eric couldn’t leave the actual ward in his state.) The next day, April 2, was thereby declared Eric’s new birthday. (His real birthday, his 40th, was the following week.)
Cells in, patient sleeping. This might’ve brought an end to his time with Super Gleevec and the hiccupping. It certainly seemed like he’d turned a corner, of sorts. In a weird way, it also allowed us, Team Eric, to declare that we’d done what we could do. Blow the false trumpets and whisper ‘hooray.’ No Beatles blaring or birthday cake allowed in the transplant ward. One glance at other patients is all one would need as a reminder.
A few days later, we packed up on a balmy April morning. Time to go home. We’d done what we came to do–what we could do. Still, our hopes shifted and moved. I like to say that parenthood (and its innumerable tasks) is like that variety-show act where the gentleman tries to keep plates spinning on thin posts. No matter how many he’d have spinning at once, some were bound to fall and break.
We’d accomplished something–hadn’t we? Was it enough?
Our lives returned to normal, in many respects. Luanne’s practice chiefs put her on call for what seemed like a month, as ‘payback’ for her time off. C. and I spent our time going for mini adventures and learning and getting together with our PEPS group. Life went on.
Eric moved to a rehab facility near Cambridge, where he slept and read to avoid nagging headaches. Eventually, he got to go home to Alison and the kids in Northampton. For them, I guess, life ticked on.
Spring became summer. There’s probably a lot to tell about these four to five months, but my facts won’t be correct. Luanne and I celebrated our son C. and watched him grow. We took short trips when her work permitted, drank a lot of iced mochas, and waited. The only things I’m absolutely sure of are that Eric was in and out of various facilities to “wait-out” colds (or recover) and that we went to Oregon for a friend’s wedding in late August.
On the Sunday drive back–a crawl up I-5–we got bad news. Luanne says a healthy person’s white blood-cell count is normally between 5,000 and 15,000. Eric’s throbbing headaches and night sweats–like one year before–had spurred him to an oncology checkup at Baystate Hospital. His white blood-cell count was at 160,000.
He didn’t want us to come out. Without accusation or judgement, in my belief, he had a reason for this. Us coming out could mean only one thing, and none of us were prepared to say it aloud, admit it or accept it: That hope was lost.
Forever leaning towards distraction and entertainment, I booked Luanne and I into the Chrysalis Inn and Spa near Bellingham for the weekend. She could relax (maybe) and we could hike on Mt. Baker and see some cool stuff. In other words, I did it to (try to) take our minds off Eric. No, it didn’t work. It couldn’t. This thing was too big (of course) and, like his cancer, couldn’t be denied. Still, we went. The place is beautiful, with amazing rooms and great food in the restaurant. Seems like the hostess had a good time playing with C. while we ate dinner with a water view. Afterward, Luanne took a long hot bath. In this make-believe world, all was well.
Growing up, my sister used to call me a ‘big fat liar’ and I’m sure I deserved it. I write stories, make stuff up. In second grade, I got into a row with Mrs. Brandon because I was certain I’d put a workbook in my satchel. Whoops. Years later, I did steal a pack of chewing gum, like I joke about in “The Churning.” It was right there, I wanted it, I took it. Yes, the flavor ran out way too fast.
But for these and other times in my life when I’ve been a little shifty, deceitful or not-exactly-forward with information, there’s only one time when I’ve actually thought of myself as a liar.
That was when I repeatedly told Luanne that everything would be okay, that her brother would pull through his leukemia. (I’d make a lousy politician or lawyer–people whose job comprises deceit, spinning and fact-twisting.)
A thousand times, at least, I told Luanne that Eric was going to beat his disease and would be fine. Maybe it was delusion. Maybe it was the optimist side of me standing on that storm-drenched mountain peak and shouting defiantly into the gale, “I’m really warm, safe and sound.” The data, the history, the sense of worry in others’ voices, the lingering ‘what-if’s…all of it…I didn’t believe it.
So, I guess the first person I deceived in this case was myself. The liar may have had an audience of just one, after all, as I’m not sure how much Luanne believed everything would turn out okay. (The volume of clutter in our brains is such that separating truth from perception from wish from hope from reality is, well, why people get paid to do it.)
Saturday, Sept. 2nd, 2006. At 6:15 in the morning, our time, Alison reached us in our hotel room at the Chrysalis. She and Luanne talked for a few minutes, but the gist of her message was horribly succinct: “You’d better get out here.”
Whatever lie I’d told myself, whatever denial had been waving a cheery flag from the battlements in my mind–it all went away in a blurred day of travel. From the moment I started racing us down I-5 to driving a rented minivan through a nighttime tempest in Springfield, I remember nothing.
Baystate Medical Center. If any lingering thread of hope had remained until that point, it broke when a composed Alison met us in the Oncology ward and I added a new term to my dictionary: ‘Palliative care.’
Eric was unconscious, sleeping. Whatever I’d been thinking or wondering that long day, I was unprepared to go into that hospital room. Is anyone really ever prepared?
At 1:30 in the morning, the ward was an intensely quiet place. The only sounds seemed to come a very happy C., who at 7 months was oblivious to our sorrow. The Oncology ward was populated by several young, saint-like nurses who were happy to play with C. out in the hall while we whispered and grieved quietly in the room. We could’ve shouted through bullhorns–Eric wouldn’t hear. He never woke up.
In school, I wrote a paper on the painting Saint George and the Dragon, about the lack of any real, definable enemy in modern life. (I didn’t know then what I know now.) My dreams are still plagued by big malicious sharks coming for me, and have featured gigantic tarantulas and other howling furies in the past. Kids’ nightmares that refuse to walk all the way out the door. Here in America, we don’t know falling artillery shells and hundred-foot tsunami waves and famine and merciless warlords. For many of us, this is what we face.
Eric looked very peaceful, breathing deeply with his head to one side. Gray whiskers had grown back. If he’d lost any weight during his ordeal, you wouldn’t know it. He looked as strong as a mountain.
Here and there, I’ve told people that, though he had leukemia, it was like he died in a car accident–it was that fast.
The part that ripped my guts out was Alison telling us how, earlier in the week, she’d brought in the kids to say goodbye to their Papa. How on earth does someone have the fortitude to do that?
Around 4 a.m. we got checked into our hotel room. C. was ramped-up from playing with the nurses, so he stood in his crib and howled while Luanne and I screamed into our pillows in the dark.
It was the worst moment of my life.
The next day, a flood of people had come by the time we reached Baystate. Friends, colleagues, old relatives. I met Laura and Kristoff, good friends I’d heard about from Eric. Some people were composed, maybe having had to dance this sad dance before. The rest of us were wrecks. My mother-in-law showed up, understandably in a state of shock. Time passed. People milled about. Going to the cafeteria, trying to be normal humans and to keep it together. We swapped anecdotes and details of our own lives, rather than do what a musical director might’ve ordered. Because standing arm-in-arm and shouting in one voice “This is not fair!!!” at the ceiling or God or the world would’ve been ridiculous. And because we already knew it.
In the afternoon, I took C. back to the hotel for a nap. During this time, Eric stopped breathing.
One regret I’ll carry for the rest of my own days is that I took C. back for his nap. If I hadn’t done it and Luanne had instead, maybe she wouldn’t have been in the room when Eric passed away. Maybe she wouldn’t have that final image of her brother: Blood flowing freely from his eyes and nose and mouth, while her mother implored her to do something.
In the week that followed, we had Eric’s funeral and my niece “celebrated” her fifth birthday. We went for drives among the greenery and saw his burial site and carried on with the business of living. Eventually, we went home. Things had to move forward.
An image my brain constructed–consciously, sub-consciously?–surfaced once we returned home. A beach at sunrise with Eric’s father (the cardiologist I never met) and his adopted grandfather Virgil walking along. Eric paddles up in his kayak and gets out to join them. Hugs and laughter and stories, no looks of horror that he has joined them at so young an age. They pal around.
It’s a happy image. I think I’ll hold onto it for a while.