What he said before he died

de73mf What he said before he died

last year life 620x412 What he said before he diedEnlargeThe author and her family  

“I’m a mangy gray dog with its ribs showing named van Gogh,” my husband told me not long before he died. “I have soulful brown eyes.” In real life, his name was Kevin, and he had blue eyes. But my husband was always a writer. Words were his tool, employed skillfully to explain, to invent, even to protect. Many years ago, defusing a self-loathing comment I made, he told me, “No, you’re a silk undershirt named Simone.”

There was a lot of living between the silky Simone and the mangy mutt. It was mostly delicious, beaches and beds, reading out loud, laughter unspooling through the days. Even a shared stint of unemployment we spent traveling through Italy, slowing down in Florence so we could cook from the markets. Fava beans were in season. When we met, on a junket for journalists in the Bahamas, we were magazine editors living a continent apart. Kevin had read a feature I had written quoting one of his favorite Berkeley professors. He thought I was smart. So we began our relationship via email, Los Angeles to Vermont. It was always built on words. It wasn’t until he sent me a poem, the one about eating the plums, that I understood he was at least flirting with flirting.

It was a lot of living, not a lot of time. On Jan. 14, 2008, Kevin began his first blog post: “I am writing this from a warm place in a small town in a cold state. It is a little bit more than 16 months after I was diagnosed with a rare cancer that will more than likely kill me.” He doesn’t mention that the disease was so off the radar — epithelioid sarcoma, with its absurdity of vowels and senseless destruction — that it took more than a year of increased suffering before anyone guessed it might be cancer. But he finally opened up that day to cope as he counted down the hours to a crucial scan, a post that made him feel exposed, wit and irreverence being more his style. His anxiety was merited: A lung had collapsed and his cancer had spread.

Yet Kevin went on with this blog, weaving data from obscure sarcoma studies with tips for the ultimate chocolate chip cookies, punctuating it with the stark day-to-day realities of living with cancer. Near the end he described his pain: “I imagined that I was carrying a dagger suspended by filaments in my lower belly.” He also stepped back to reflect on his life, recalling vivid moments from brief, now burnished times. “I think about stories a lot these days,” he wrote. “They may be the only thing that can save us.”

“I am hoping to throw away a pair of boots tomorrow,” one post began. “They are sitting in the playroom under a chair; neither toe nor heel sit evenly on the ground, and what was a rich cordovan leather is now murky with filth and dust. I haven’t worn them for years, and still the boots span some of the biggest happenings of my adult life: ‘Testing’ products for a national magazine; hiking with my now-wife in New Mexico, the red cliffs of Sedona, around the Grand Canyon. Walking with her another time up a steep pitch in Vermont and being surprised and delighted when she threw off her clothes and plunged into a mountain pond, truly, that wasn’t very remote at all.”

We scratched the itch, more surely being more, until there was a toddler and a newborn. But at least we had a common enemy, these chortling little crazy people who whittled us bare at times as we longed for sleep and dinners communing with uninterrupted sentences. Still, we had hope then, a muted vision of ourselves once again in an Italian wine bar or even a coffee shop downtown without a miniature mouth suctioned to my nipple. Meanwhile we kept our Newfie from upending the highchair as she dove for spills, met kindred spirits doing the daycare dance, bought an old farmhouse with a beautiful new kitchen, not for show but for braised short ribs and birthday cakes.

Add cancer and we got an enemy that over time hushed joy and divided us into camps, speaking languages that became increasingly foreign to each other. We both had caverns of pain and fear, but they weren’t the same. It’s a side effect that’s not much talked about.

Rare as it was, Kevin’s disease was unusually “proximal.” It tends to turn up somewhere like a finger, and they talk amputation. When it starts in the pelvis, in and around a number of considerably useful parts, they stop talking. At least about surgery. They made guesswork plans and started debilitating treatments and experimental trials that poisoned me too in a bleary transformation from lover to overbearing caregiver.

“I’m good,” he would say with a captivating smile and nod to the techs, the nurses, the doctor. Kevin so wanted to be fine, to be whole and human. But I saw him gray with pain as he got out of the car, shuffled inside. He would talk and I would shoot the doctor a “don’t buy it” look. I wanted them to understand and help him. That’s the position I would bring to the fight after we left the hospital. His bitter response: “You don’t see a man, you see cancer.”

Waking him as I headed out to a meeting one morning, his greeting was so warm but I noticed his narcotics-glazed eyes. He was planning to get himself to the hospital for something routine. I hesitated on the edge of just-a-feeling and the certain consequences of changing my plans, enforcing my judgment that he not drive. We kissed goodbye. A few hours later I stood at the tow lot in the pounding sun, removing license plates and junk from our minivan, a small sapling lodged in its fender. Kevin was fine, no one else involved, but I still tremble imagining his reaction if I had called it the other way. I don’t remember words exchanged, just silence, avoidance, shame.

Physical pain is a different divide. Early on it was radiation burns disintegrating the most vulnerable skin imaginable. Despite his shocking level of endurance, there were nights I got children to bed trying to downplay the sounds of screaming from the bathroom. Somehow I could keep kids, pets, home and my job, but here I was helpless. He was in a place too deep to connect. Later, with the disease and the drugs amped, I would hold out until 4 on Sundays before losing hope that he might get up. Widow rehearsal.

I know I’m leaving out the many lovely, loving bits, painting a black mural over the end of my marriage that in truth at least flickered with light. Van Gogh still made me laugh, and I watched him pour the end of his energy into playing and reading with the kids. It was only fair. I didn’t get enough, but I got a longer turn. That we never stopped loving each other is true but not a surprise. It’s the ugly, still human moments that get buried.

In the summer, before he died in late fall, the kids were in California visiting their grandparents. Time for the two of us. I came home from the grocery store and tossed him a chocolate bar he liked, which landed on the floor near the sofa where he lay. I’m not sure why I didn’t hand it to him except that it wasn’t meant to be a big deal, just a nice gesture. But I screwed up and it came off as contempt. He threw it with such bitter hostility my next gesture was cleaning gooey chocolate off the walls.

I don’t know what words were volleyed then, I don’t pretend that mine were sweet, it’s just that I’m tattooed with one scene, the before and after a blank. He took off his clothes this time and stood in front of me yelling, “Look at me! Look at me!” Not that I hadn’t gotten the gist of what 116 pounds looks like on a 6-foot frame, seen the bony collarbone jut from the collar of a T-shirt. But the spindly legs coupled with so many scars across his chest — the spot where the infected chemo port had been removed, where multiple chest tubes had been inserted to inflate multiple collapsed lungs — the bruises up his arms, all those shot veins from all those blood draws. A single image came to mind: a man crucified. The one I had worshiped, here living and unforgiving. Betrayal comes in so many forms.

Death, of course, would be the ultimate divide. Kevin held out so long, suffered so much for what felt to me like less than life. After close to four years, lonely and tired turned to isolated, exhausted, grief-stricken, but by sheer necessity, I was still on my feet. The care he needed, but didn’t want, only increased.

And still he almost never gave up the strikes for autonomy. The anguish Kevin felt when I insisted he get a bath (we did, among all the other reasons, still share a bed) gave him no special powers to perform the simple, but for him excruciating task. He believed he could measure his own morphine and all the other meds his parents and I needed a spreadsheet to track. I took them away. I let in the nursing aide. I was the bad guy. He didn’t argue, just seethed helplessly. But I couldn’t control his dangerous propensity to hobble to the bathroom and stay. Hiding from us or lost I don’t know.

One middle-of-the-night trip, I waited, afraid to intrude. Horrified when I realized it had been nearly two hours, I knocked, went in and found him crouching on the floor in a corner, shivering. “Aren’t you cold? Come to bed,” I said lightly. He nodded and as casually as I could I steered him back. These mystery ventures, a drooping eyelid, the fight to find a word — or, conversely, the sudden concern over an oil pipeline in Seattle, suggested brain metastasis. Soon after, he chose to move to our residential hospice facility, craving peace that I couldn’t provide, having no volume or volatility control for children. Maybe it was a respite from me too.

The Monday morning we had arranged for an ambulance to take Kevin there my son woke with fever that I masked with a heavy dose of Ibuprofen, buying enough time for him to get through the morning at school. The nurse would call, I knew, and I’m sorry if anyone caught whatever he had, but I was sure it wouldn’t last as long as a little boy’s memory of watching his father carried away, leaving home for the last time.

While I was managing the bed-to-bus scramble, Kevin had somehow gotten up and dressed himself in his nicest jeans, button-down shirt and loafers. Yet when I found him upstairs he was in despair, asking me over and over, “What am I going to do?” I have no memory of how I responded. I want to remember that I said something perfect but all I’m sure of is my single, wrenching thought: You are going to die.

He came down on his own and greeted the EMTs, helpful and polite as they got him out and into the ambulance. I climbed in and held his hand as we drove, watching gold and russet mingling with October blue sky as it all streamed into the distance behind us.

Kevin’s dad drove over in a separate car. We arrived and moved into this peculiar place, not hospital, hotel or home. The three of us sat, absorbing, searching for normal. And then Kevin looked at me and smiled. He said, “You’re green. Don’t you think she’s green, Dad?” My father-in-law and I exchanged baffled, broken glances. It sounded somehow like a compliment.

My therapist insists he was trying to say “great,” that it’s the beginning that counts.

Great. I’ll go with that.

 

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What he said before he died

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