I've Been Trying to Write This

A lot of cancer patient support these days takes place online, especially for people with rare cancers who are few and far-flung. So patients "meet" in Facebook groups, or on Zoom; they share stories, give each other advice about treatment, carry on research advocacy and fundraising together, participate in awareness campaigns. It’s so incredibly helpful and hopeful to communicate with and be a part of this diverse group of people living with cancer. But it also breaks your heart.

Because someone you “know” from a forum online, say someone in complete remission, is no longer so. Another whose tumors were stable, you learn, now has tumors that are growing. Someone who was improving is suddenly in hospice. You're sitting around waiting for your next scans and someone else you "know" has scans that are "mixed results" or "bad news." Someone else who was "cancer famous," a well-known beloved patient advocate, dies. 

None of it is actually all that sudden. You know it's coming; you follow the blog posts, the tweets, the FB posts, all less frequent as the person you "know" moves closer to the end of life, and then the post is in a different voice altogether, the loved one sharing the obituary. The losses come heavy and fast in Cancerland; the disease is relentless, indiscriminate, unforgiving. You are gutted. And.

With each loss, each setback in another patient, you feel that thin hot wire of dread wrap itself a bit more tightly around your heart. You taste the gall of loss (even though you only “knew” them online!) and find yourself increasingly triggered by phrases like ¨she ran out of options,¨ or ¨she ran out of time.¨ You wonder what your next scans will bring. You wonder if you’re somehow squandering this gift of life, however temporary, on fears and complaints instead of serving others well, instead of finding your true path. The days and nights feel always a little—and sometimes a lot—fretful. Or just plain sorrowful.

Frankly, it’s not a great way to go through life. In fact, off the top of your head you can think of about a billion ways of living that are better and way more fun. But there are also much worse circumstances one could be in, worse illnesses even, yes, worse than cancer and way more debilitating.

Anyway, it’s the life you’ve got. Carcinomie life. So you do your best to shape each day into a lumpy, grateful prayer, even in the face of this thief of joy. You think of the future in terms of months, weeks, days. Years are an abstraction. You make plans because you refuse to let the thief in. You keep your courage up and go about your day-to-day, trying to get it all in. Trying to help. Trying to do a little something in the time left. You aim to be cheerful, to act like a decent human even though you’re angry at these ravages and your heart is breaking every day.

And then you look up and it’s nearly Christmas, time for your own scans. And you hope on hope that you get exactly the same gift you received the year before, clear scans, good health, and the chance to make some plans for the New Year. You know you don’t deserve it, that people much better than you, smarter, harder working, parents of young children, grandparents, gifted artists and scientists, you name it…that cancer, especially lung cancer, has stolen them away too soon. 

Then, your radiation oncologist comes bursting into the room before the nurse has even finished vitals and you can see her smile, even under her COVID mask, and you know. This year, you get to pass Go. In fact, this morning you found $150 stashed deep in the pocket of an old purse, but didn’t want to take it as a sign because that felt wrong. Anyway, you’ve had more good fortune. You don’t deserve it. But no one deserves lung cancer either. So you do what you always do, what you always did at the end of each academic semester when you used to be a professor and the wheels had come off on your teaching and student failures felt personal. You resolve to do better. To be better. Or at least to pay more attention to each day and to find what is holy in it, to be grateful for that gift. It doesn’t feel like enough. It never does.

 

Betwēonum

Between. The word comes into modern English from the Old English; be (meaning by) + twēonum (meaning two). Between two things. Between yes and no is maybe. Between red and yellow some orange.

We are between the beginning and (we hope, someday) the end of a pandemic, our lives suspended...by...what? The strings of our masks, maybe?

I am between scans, between cancer-free (inactive disease, at least) and possible recurrence (this disease comes back...we just don't know when), in a kind of dangling dance between jubilant and cautious – what I've taken to calling my "little life of living large." And right now, the world is with me on this. We're not making any plans.

I walk around the neighborhood, keeping a safe distance from other walkers (though I long to pet everyone's dogs!), and it seems that all the peonies elsewhere have been blooming for weeks. Wet flowers topple their stems after rain in every yard except mine. My pink peonies are still shy, balled up like big marbles, and just starting to show a little color. In this faint pushing forth, they are between bud and full bloom, with tiny ants busying themselves at the sepals' nectaries and standing sentry against other would-be invaders. Nice gig if you can get it.

I've been in a holding pattern with the peonies. I know better than to fret–or to dream–about the imaginary future. But I fret and dream anyway. The virus. A new front porch. Flamboyant flowers. Kayaks. Scans. Shortages. Hiking for miles and miles through another country's mountains. Stop. I'm not going anywhere.

Grief and loss are strewn about the planet like wreckage after a worldwide storm. Except we're not after. We're now. Which is another way of saying we're in between. Now is always in between. Here. In the muck and almost-bloom of it. Yes, I'm not going anywhere soon. I could get used to this.

Writing in the Past Tense

As he slowed down in his later years, my dad started spending more time in front of the television. Oh, he still puttered around the house, but more often than not, when I was home visiting, I'd find him dozing off in front of back-to-back episodes of American Pickers or Pawn Stars as the afternoon rolled over into evening. He liked TV in the mornings too, which always felt strange to me. The only time we had TV on in the mornings growing up was on Saturdays when we kids watched cartoons or Sundays when my dad watched the news-talk shows. But in Dad's later years, the TV came on early every day and pretty much stayed on. He usually woke before everyone else and started the coffee; I'd come downstairs a little later, pour myself a fresh cup of brew (he always made it weaker than I like) and go sit with him; we'd share out the measly sections of the ever-thinning Daily Freeman, talk about the demise of print journalism, and watch the chirpy hosts drink holiday cocktails on the morning talk shows.

Okay, that felt strange. My dad died only a week ago today, and already, I'm writing about him in the past tense.

In the week before he died, my 83-year-old dad had a heart attack. Then he had another. He was already a bit frail from some other health issues, and it turned out he had nearly total occlusions of three major vessels in his heart. He lived a few more days after we learned that, and we had hoped that he'd get stable enough to be a candidate for surgery. But he never did, and his terribly damaged heart could not be repaired. He passed away in the afternoon on December 3rd after being taken off of life-support devices that weren't doing him any good and that he didn't want.

On December 8th, the day after his funeral, I marked the one-year anniversary of my own catastrophic health episode – emergency surgery and hospitalization for a pericardial effusion caused by lung cancer. I almost died. This year, I lit a candle for my dad on that day, the Feast of the Immaculate Conception, in the parish church where I grew up. And I know that's how it's supposed to go, the child says a final farewell to the parent. And it almost happened the other way around, so I'm grateful for the grief, that I'm still here to carry it, and, I hope, to be of some use to my mom and sisters. But still, I miss my dad, his gravelly voice, his gruffness, his tender heart. It's Monday morning at my parents' house, my childhood home, and no one has made coffee. The TV isn't on. Yet.

I got to say a few words about my dad at his funeral, and I read one of my favorite poems, "Let Evening Come" by Jane Kenyon. My dad wasn't much for poetry, but I think he would have appreciated Kenyon's work. The imagery of this poem reminds me of our family farm out in the Catskills, a place my dad loved.

Anyway, here's what I said about my dad:

My dad was a handsome man. He looked great in a tux, and his smile dazzled. No wonder my mom decided to keep writing letters to the young Marine she met on that bus between Kingston and Albany so many years ago. We’re glad she did.

One of the earliest memories I have of my dad isn’t of him exactly, but of his voice, a little gravelly, a little gruff, coming to me across a darkened room. We’re watching some silent home movies my parents had made of themselves on a great American road trip they’d taken before any of us kids were born. Dad is narrating the footage of him at the rim of the Grand Canyon.  In the movie, he’d repeatedly walk up to the rim, look down and spread his arms as if he were getting ready to fly out over it; then he’d turn around, waving and smiling, walk toward the camera, and then walk daringly backwards toward the edge. “Don’t worry,” he’d say, as the movie projector chattered over my childish gasps. “I didn’t fall off.”

In addition to being a terrible kidder, my Dad was an artist. I know that might sound strange since we have no evidence, no paintings or sculptures, no mixed media.  But my dad was a champion sand castle builder. In the summers when our family was lucky enough to get a week’s vacation at Cape Cod, he’d spend much of a day digging with us in the sand until we’d built something impressive, a castle with a moat and towers or a pyramid that would rival the ancients.  At the end of the day, we’d walk away satisfied, not caring what the ocean would do.

You could say he was that way about the many small businesses he owned over the years. He’d build them from nothing into something kind of impressive; not big, exactly, or elaborate, but something that worked, that stood for awhile; then he’d let them go. He could never really work “for” someone; he needed autonomy to fulfill his own vision, like any artist.

Dad loved the Yankees, always, though he respected the Red Sox. His love for the Bronx Bombers is well-documented from his early days; in a photo album from his childhood, he kept an autographed photo of Joe DiMaggio, ticket stubs and a score card. When he and my mom were out and about doing things on a day the Yanks were playing, he’d remind her, sometimes to the point of annoyance, that they had to get home so he could watch the game.

But more than he loved the Yankees, my dad loved us. Always a soft-touch and perhaps overly generous with his daughters, tenderhearted and gentle, proud to be married to a well-educated and accomplished woman. And gosh did the two of them look great on the dance floor together at all those fabulous Italian weddings we had over the years. He cared for us all as best he could, and we’re grateful to be his family.