Part 28. H2O
During the middle of winter, friends from Florida love to report their high temperatures to me. Particularly that winter — the cancer winter, when I was making daily trips to Dana Farber for radiation treatments — I heard from my southern friends a lot. They didn’t know I was sick and on medical leave. They figured I was one of those poor swine they saw slogging through the snow on the evening news.
Boston’s historic winter got a lot of press. The snowfall amounts were huge. The total was a tiny bit shy of 109 inches. In case you can’t picture that, that’s a fuckload of snow.
It piled up. For many weeks, the only way to enter and exit our house was through the garage. It took all of the family’s energy just to keep the driveway clear.
I couldn’t help, of course, but Nicole and the boys actually seemed to have fun out in the snow. I was jealous of missing the opportunity for family bonding, but I was also too weak to lift a shovel.
So perhaps it’s easy for me to say, since I was not part of the shovel brigade, but even that freakishly harsh winter didn’t bother me. I did have to go out in it every day to drive myself to the cancer center, so even though I didn’t shovel the snow, I had to deal with it.
Having spent most of my life in the South, I was not used to hard-core winter in New England. Snow shoveling aside, I rather liked the sounds and smells of winter. Harsh wind made me greater appreciate the warmth of a fire or the sheer godliness of a cup of hot coffee in my hands.
In the same way, winter leads us to truly feel the joy of spring.
And there is no place like Boston in the spring. Everyone smiles. Snow-beaten leaves are swept away and flowers are planted. Skies are bluer than any you’ve ever seen.
When I was a child and we first moved to Florida, my mother lamented the loss of seasons. Florida had reliable and comfortable temperatures, with little variation year-round. It rendered life dull, she said. To appreciate a spring, you need to have lived through a winter.
That spring — after the massive snowstorms and record temperatures, after the chemotherapy and radiation treatments stopped, and before the surgery . . . that was a good time.
I caught my emotional breath. I was still weak, but well enough to greet visitors. Daughter Sarah and her boyfriend, David, drove up from Brooklyn for a visit. Graham and his new bride, Amanda, came all the way from Indiana. When they saw me and heard about my treatments, I think they felt more confident that I was going to be okay, that I was not going to die any time too soon.
Still, I felt that although I was the one who was stationary, this was kind of like a Farewell Tour. The Cancer Tour.
Some of those spring days were so welcoming that I moved my laptop to the table on the back deck. There were still small Matterhorns of snow in the parking lot at the train station, but we were sitting outside in shorts, drinking beer and grilling steaks.
Nicole’s sister, Marianne, came to visit. She is a cook of astonishing talent, so life was good, even if it felt precarious. It was a beautiful day, I was sipping on a beer, writing about music I loved. And I wondered if this would be my last spring.
I recall sitting outside at the table one day while Marianne, Nicole and Savannah joked around, and writing nearly all of the chapter in my book devoted to the life and death of Sam Cooke. It’s nice to have such a strong and good memory of writing.
The boys were gearing up for baseball. Life was proceeding as normal, though it wasn’t entirely normal.
My illness was all around us and it was hard to accept life that spring as every other spring because Dad, usually absent during the day, was lumbering around the house in a bathrobe or shorts and flip flops, depending on the weather.
We’d turned my cancer into a joke around the kids and Travis and Charley, the little guys, fell for it. Our scheme was working. If I wasn’t worried, if I was joking about “butt cancer,” then they felt okay. They’d laugh and sometimes groan when I’d ask them to get something from the kitchen. “Come on, dudes — help out your cancerous old dad.” It was a joke but often I had trouble walking. The radiation seemed to have exacerbated my already arthritic knees and I’d usually wait until the boys left the room before struggling to get up from my chair. I didn’t want them to see me.
By making my illness a joke, we removed the burden of worry from the boys and they could sleep at night.
The difference was Jack. It happened once a week, as if on schedule. After the boys’ bedtime, when all three of them were supposed to be asleep, our night owl would appear. The master bedroom door would open and he’d be there, glassy eyed, for his ritual walk across the room to lie with me and comfort me — or himself, I’m not sure.
Jack was the most obviously affected by my illness. I hated to see him cry, but I loved him for the affection and concern he showed me. We don’t ask for that, but we need it. He seemed to know what I longed for: just a touch and a look in the eye.
After a blissful early spring, the time came for surgery. Then followed a week in the hospital, a week at home, then the seizure and another week in the hospital.
As it turns out, my body was losing so much with each explosion of waste, and that which was lost was not getting replenished.
I remembered a few years before, one night when I was with Sarah, Graham and Mary and they jokingly — but seriously — suggested that I needed an intervention. This had nothing to do with alcohol. It had everything to do with water.
The three of them drank the recommended eight glasses of water a day. Me — I wouldn’t drink anything without flavor. And although I never got drunk, I did like beer. What we have here is not just failure to communicate, but also a failure to hydrate.
My seizures were caused by severe and dangerous dehydration. This had been (and would become) a chronic problem for me. So I went back to the hospital, got hooked up to intravenous fluids, and figured I’d be home the next afternoon.
I was there for another week — a hellish, depressing week.
It doesn’t sound so bad, does it — spending a week in the hospital, with everyone waiting on you? Hell, sounds better than a week with Juan and Wesley in Aruba.
But it was awful. It’s hard to describe what there was about it that depressed me so much that I seriously wondered if death might be a more satisfying alternative.
Don’t misunderstand: the people were great. I was at South Shore Hospital, adjacent the Dana Farber Cancer Center. This meant that Corwin and his happy band of residents could easily keep watch on me.
But since I was back in the hospital for observation — okay, so it was dehydration, but they wanted to make sure it wasn’t some other stuff too — I was in a different part of South Shore. That meant that all of the nurses who were experts with ostomy bags were not on my floor.
The nurses on my floor were great, but they had little or no — mostly no — experience with these indelicate appliances. In fact, they didn’t even have supplies. At one point, they even let me go into the supply closet alone to see what I could find, because they weren’t sure what the stuff looked like.
What I found wasn’t the brand I was most familiar with. (I will, at another time, discuss at length the relative strength and weaknesses of the various manufacturers of ostomy bags and accessories.) The Brand-X ostomy bags sucked and I missed my Hollister appliances. (Hollister is sort of the Mercedes Benz of ostomy bags.)
So my basic problem — bags that leaked waste all over me — was not solved. The nurses tried to help me, but I always ended up with a bag that broke or leaked and left we covered in something horrible.
I was constantly monitored, but once it seemed to me that I was stabilized, they wanted to continue to observe me. For five more days.
That’s a total of seven days in the hospital, after just finishing seven days in the hospital seven days before. And let’s not forget two surgeries, one big and one little (Mutt and Jeff surgeries).
It was the solitude that got me. I was alone all day and all night. I had a private room. Nurses visited, but only every three or four hours. Nicole came by every other day with the boys. I understood: the hospital was dullsville for the kids and Dad was no fun just sitting in bed. And the television sucked.
So mostly, I was alone. Television bored me. I was blessed with good books — my friend Jeff Grossman had visited and brought me Elvis Costello’s autobiography — but I was too bored to read. Truly: too bored to read.
Nothing held my interest. I couldn’t concentrate. I didn’t want to tell the nurses, but every now and then I’d get that head-spin thing again.
So I lay there and soon the bed began to hurt my body. I tried to move because not moving had begun to hurt. I walked around, tethered to my IV pole, but there’s only so much of that I could do.
The boredom was crushing. At night, unable to sleep, I’d be in a near-cold sweat, not hot and bothered by passionate thoughts of a woman — the kind of “Cold Sweat” James Brown used to sing about — but the sense that I’d rather do anything, perhaps even blow a dead dog, than lie in bed twelve minutes more.
I began to wonder where I could find a dead dog.
Those days in the hospital were more miserable than the days after surgery. Nothing helped me sleep. Sleep arrived on a capricious schedule when it arrived at all. Nurses were busy — let’s face it, there were much sicker people than me who needed their attention — so I might see them twice during a shift. I greeted the meal service the way Druids greeted the solstice. I was so lonely for human contact. My eagerness to talk probably frightened the young women volunteers with the food trays.
The rest of the time, I was alone, unable to concentrate on a book or to watch a movie (the hospital’s movie channel offered only lame choices such as Jurassic Park III), or to talk to anyone else.
When nurses did come, I came on like a hopped-up speed dater, eager to prove myself the Energizer Bunny of conversation. No one likes a man who stinks of desperation.
This second hospital stay — the dehydration visit — coincided with Corwin’s long-planned family trip to New York. He had to tend to something for his mother, and so I was in the hands of his residents, doctors Powers and Hernandez.
These guys are no doubt excellent young physicians but at that point, they seemed tentative, wanting to make sure they did nothing to piss off Corwin. (I couldn’t imagine the affable Doctor Corwin getting pissed off if a dog shat on his chest.) So Powers and Hernandez wanted to out-doctor each other.
They took every precaution they could imagine with me, testing this and testing that, to make sure that it was only dehydration and not some other magical interstellar cancer visited on my body by space aliens.
Eventually, Corwin returned and I was released and forced myself at home to drink huge bottles of water each day. The boys were instructed to nag me about my water consumption.
And I kept it up. Even though it had no flavor and it required me to urinate every twenty minutes or so, if it would keep me from another hospital stay, then I could do it. I would do anything to avoid going back. Dead dogs beware.