Start again…

Twenty years ago, I wandered on an early morning walk. Mightily pregnant, I didn’t go far, merely down to our sugarhouse and through the white pines. I looped back through the garden. I was about to have a second baby — that very day — and, second time around, I knew those solitary walks would — for an undetermined time — be a distant memory.

In a break in the rainy weather, a friend walks me through the cemetery, past the little league field, and down the hill into town. At Front Seat Coffee, she buys cookies, and we sit in the courtyard, eating and talking, the courtyard where I’ve passed so many hours with my laptop. Slowly, we walk back up the hill. Three robins perch on the elementary school’s fence.

Six weeks ago, another friend walked me to the Galaxy Bookshop, the first walk I’d taken to town since last November. I picked up a copy of Dostoyevsky at the Galaxy, and finished the novel in Dartmouth, waiting for surgery. The surgeons teased me, Why such light reading?

One more lesson from cancer: how intensified the world becomes. Slip back, start again. Repeat, repeat. But isn’t that one way of the world? There’s plenty more ways — a crash, a sudden halt, a perilous nonstop descent — but often our lives are fits and starts.

I remind myself, Try to learn something.

This day dawns overcast, broody with the promise of rain, the world lush with spring green and birdsong. To keep myself and my cats happy, I light a fire in my stove, brew coffee, consider the day. As I recover, my old demons of uncertainty have woken, too. My walking companion counseled me to narrow my energy to the actual day. Help was recently sent fortuitously to me; this morning, as I mixed powdered sugar and butter for cake frosting, I reminded myself, Be grateful; use your luck wisely. Savor this day.

At Twenty-Eight

By Amy Fleury

It seems I get by on more luck than sense,

not the kind brought on by knuckle to wood,

breath on dice, or pennies found in the mud.

I shimmy and slip by on pure fool chance.

At turns charmed and cursed, a girl knows romance

as coffee, red wine, and books; solitude

she counts as daylight virtue and muted

evenings, the inventory of absence.

But this is no sorry spinster story,

just the way days string together a life.

Sometimes I eat soup right out of the pan.

Sometimes I don’t care if I will marry.

I dance in my kitchen on Friday nights,

singing like only a lucky girl can.

And another turn in the plot…

My body falls apart again, and my daughter drives me to Dartmouth. “My car only goes to this ER,” she tells me when I hint at negotiating a closer ER. She asks her blunt and even-toned questions, “What are you afraid of?”

Among other things, I’m afraid of waiting, in pain, which is what happens, and I survive that, of course. The hours in the ER waiting room introduce us to an intimate slice of others’ lives. The man who drove a screwdriver into his hand and didn’t seek antibiotics (not a good choice), another who crammed his hand between his two fighting dogs (the hand lost), a woman with a damaged foot who phones her mother on speakerphone. Across the large room, listening, I wince at the painful distance in that relationship.

Eventually, I’m given a bed in what’s labeled Hall 3. Shift change, a kind nurse hustles to give me meds. In the hallway, we are yet in the swirling mix of others’ lives. A hall mate (not a roommate) who I never see but who’s recently widowed; his companion struggles to figure out his meds. Later, my daughter steps outside and sees a prisoner who’s a patient run through the parking lot, high drama. She leaves after midnight. “Drive safely,” I say, “text me when you’re home.”

In the night, the surgeons stop in, and again the next morning, when the surgeons and the Good Doctor my oncologist meet in my room. Like a rushing train, surgery is coming rapidly and unavoidably towards me. Much as I’d rather not, really rather not, I begin to accept this. I think: get my tools together to survive this. Print out my manuscript, collect books and a knitting project. In all these countless hours in varying hospital rooms and hallways, I’ve never been bored. Frustrated and weeping, laughing and curious, but never dull. Another thing to be grateful for.

I’d rather not, but here’s another bend in my story, as with my hall mate and waiting room companions…

The crying moments…

I’ve written frequently in this space about living with cancer and cancer treatment since I was diagnosed with lymphoma last November. From the beginning, I was determined to hold myself together. Some of this was simply shock; I could not believe I had been walking around, working, going to birthday parties, hanging with family and my friends while cancer was devouring my body. By the time I ended up in the ER, telling the triage nurse I was circling the drain, the cancer had metastasized to stage four. I needed a moment. I was not about to get a moment.

In the long hours of yet another ER visit, my daughter told me that a longtime friend had asked her last November if I actually intended to undergo chemotherapy. I hadn’t heard about this inquiry, and the question stunned me. I’ve been my daughters’ sole parent for a decade now; even in the worst of these cancer nights and days, I remain foremost a mother, unable to relinquish my watchful eye. After diagnosis, it was immediately clear that the cancer was rapidly growing; without some kind of treatment I would die that winter. The lymphoma I have responds well to chemo. My other option, perhaps, was to seek an alternative treatment — where, for how much, and with what likelihood of success — was dubious at best. In my fifties, I was determined to live. My oncologist was clear that the chemo would shove me to the edge of demise. He told me, You are curable. So, in a rare action of trust, I stretched out my arms and said, Infuse me.

As the cancer was so advanced, I suffered numerous complications from the chemo, which resulted in all the hospital stays I’ve referred to in this blog — nearly a dozen — weeks and and weeks and weeks this winter.

Now, April, Easter rising tomorrow, I’m drinking a friend’s homegrown chamomile tea this morning at my kitchen table, watching the small rain feed spring’s green, alive, in remission.

From the get-go, too, I determined not to burrow into the rathole of despair that I’ve seen disease wreck upon individuals and spread to families. This recent ER visit, however, forced me to the crying day. I wept before the kind nurses, the warm hematologist with her sparkly hair, the PA who insisted I not leave even as I connived deals and plans for discharge. I did not cry before the elder hematologist, who had certainly been practicing medicine for most of my life. I said, yes, yes, I understand. And then I wiped my tears with my thumb when he left.

By the late hour when my daughter had left, and I was alone again in the darkened ER room, I’d taken stock of what I’d crammed in my backpack: two books, my laptop and charger, a handful of underwear, my notebook. I’d forgotten my knitting, which was unfortunate. The nightshift nurse brought me water and those eternal saltines. She was a traveler and had last worked in Iowa.

Much later the next night, two nurses wheeled me through the dim and empty hospital halls to another room. Of all the experiences I’ve had at Dartmouth-Hitchcock, I’ve oddly enjoyed these late night journeys through this huge building. So many stories here, so much living and dying, so much richness. By then, I’d finished with my weeping, joined the world again, all of us, doing what we’re doing.

A driving spring rain
gliding, wending through the trees
speaks in little drops

~ Bashō

Is that church door open?

About a year before my mother died, I visited my parents in northern New Mexico. My mother was on 24/7 oxygen then, which she understandably chaffed against, and I took her on long drives so she could leave the house. One afternoon, I drove the rural roads to the Lamy train station. Take the Amtrak to Santa Fe, which I’ve done, and you don’t disembark in the quaint plaza town. 20 miles outside the adobe city, there’s the small Lamy station and an old saloon named the Legal Tender, and not much else. I parked at an old church that appeared to be abandoned and told my mother I’d be right back. I called over my shoulder that I wanted to see if the door was open, as church doors often are. When I looked back, my mother had her car door open, one foot on the earth, determined to follow me. She said cheerily, “I’ll come, too.” She was attached to a heavy oxygen tank on tiny wheels. The terrain was rocky, and there was no way I could navigate my mother to that door.

Somehow, I talked her into staying in the car. That was my mother, usually up for an adventure, willing to rattle a locked door, peer through a window, maniacally curious. It’s me, too.

In these brown-grass April days, as I begin to walk again, further and further each day, I think of my mother, how she would search for daffodil buds and admire the blooming snowdrops. Robert Frost is famous for his line, “In three words I can sum up everything I’ve learned about life: it goes on.” Bitter, perhaps, or maybe not so. Having faced my own (blessedly at this moment passed over) demise this winter, I’m beyond happy to immerse myself in the stream of life going on…. This life.

I woke this morning with a dream that I’d never had cancer. In the dream, I’d overslept and was late to work…. I was sweating, nightmarish. The dream haunted me all morning, trailing me, while my dear friend visited and brought me birthday presents that reminded me of my mother, and then fetched my library books so I could lie on the couch these afternoons and recover from this last cancer dose. When she’d left, I slept again. When I woke, the dream had broken and lay on the floor like broken glass: rubbish.

Such a labyrinthine world – mothers and daughters and granddaughters – disease, too. In these still days, waiting for spring’s rushing green, I embrace what I know, and that I never will.

… we are all

the dead, I am not apart from you,

for long, except for breath, except for 

everything.

~ Sharon Olds

A fluttering stir like a fledgling first stretching its wings…

On my way home (again) from Dartmouth-Hitchcock Medical Center, I’m at a pharmacy, picking up prescriptions. The one I really want – the pain meds – is apparently not available, simply not stocked, which surprises the heck out of me. It’s a common opioid. In my brother’s car, I phone Dartmouth, miraculously reach a nurse who sorts out my problem swiftly. My brother drives down the road, where another pharmacy tells me I’ll need to wait.

In a dusty midafternoon sunlight, I take him on a downtown tour of Barre, around the courthouse where I spent so many hours. I point out the window where I stared at the chickadees in the crabapple trees. We keep going and walk around the Civic Center where my daughter and I went to basketball games. The lot is empty, dirty with winter sand. We talk for a bit about these neighborhoods and where we grew up, our mutual interest and speculation in local history, how towns rise and diminish.

In the Walgreens parking lot again, I pull up my sleeve. Where a nurse recently pulled out an IV, the band-aid is soaked. I show it to my brother. “Don’t touch,” he tells me, as I wince, creeped out. “We’ll clean it when I get you home.”

That blood-soaked band-aid, in a filthy parking lot, feeling beat down to hell and just wanting to head home, wash off the hospital reek and nuzzle a cat, but waiting for pain meds… is a sliver of cancer. In Walgreens, they’ve received my prescription. The pharmacist asks me if this is going to be an ongoing thing or what.

Hello, I think. I am clearly a cancer patient, with my scalp wrapped in a sparkly scarf and my eyes underscored by lines. The backs of my hands are red-dotted with red needle sticks from blood draws. My fingernails are broken by chemo. But there’s enough of me, yet, to lay into the pharmacist and both get my prescription and make him apologize. I know the deal about opioids. I’ve published a book that included Walgreens’ role in the devastating opioid crisis. Nonetheless, I’m determined to get my 21 pills, and I’ll send family back for the remaining allotted 21 pills, and I’m darn grateful for that. This, I tell him, is getting me to the finish line. And I’m going to get there.

I ante up my $4 copay, and then my brother drives north, over the Winooski River, where I happily point out the first spill I’ve seen of coltsfoot this year.

Later, at home again and opening my email, I’m gratified to read that my essay “Red Devil, Survivor Herself,” has been accepted for publication this April, my way of rowing against disease. A line from the essay reads: “Here’s a lesser known side effect of my chemo mixture, cisplatin: lying in bed, a whooshing revolved in my left ear, a fluttering stir like a fledgling first stretching its wings.”

Last, if anyone is so inclined, my youngest has signed up to walk in Dartmouth’s Cancer Center‘s annual fundraiser. Many thanks again, all, for reading my words. Happy April, wherever you may be.

From Donna Tartt’s The Goldfinch, my hospital read:

And I add my own love to the history of people who have loved beautiful things, and looked out for them, and pulled them from the fire, and sought them when they were lost, and tried to preserve them and save them while passing them along literally from hand to hand, singing out brilliantly from the wreck of time to the next generation of lovers, and the next.

An umbrella walks past…

File this week under “the best-laid plans of mice and men go oft astray,” or, just because I desire something has no factual bearing on reality. (Is there a message for national politics here?)

My sixth and infusion has been delayed, as I’m admitted, again, at Dartmouth-Hitchcock. Two days before that scheduled infusion, I woke around 11 at night and phoned my older daughter who was just getting into bed. I said, “You’ll have to take me back to Dartmouth again.”

In a thick fog, she drove my mother’s blue Subaru down the interstate along the wide river, with sparse traffic and scant words from me. In the ER, late, late, we’re taken into a room, and the usual questions and IV and meds began. The nurse remembered me from my previous visits. In a rocking glider, my daughter slept a bit while I wondered at the light’s hue: amber, or tinged with orange, like heating lamp mixed with a gentle reading light.

Eventually, awake for over 24 hours, my daughter heads home to sleep. My oncologist appears and reassures me. “You’re getting there. A few days later, but getting there.” Our conversation drifts into where I’m heading in this new phase of disease – recovery, oh say that word again, recovery. What will this mean for me, and how will my life change? We talk a little about trust, and he mentions that, once trust is broken, it’s nearly impossible to mend that damage, a fine thing ruined.

So here I am, in yet another bend of this journey, learning patience, learning something more along the tenor of faith, that whatever is not within my sphere of influence is not mine to alter, such as these days here.

April. My younger daughter brings me blooming hyacinths and bulbs in a glass vase. The doctors talk with me about Donna Tartt’s The Goldfinch, and if the federal funding for Vermont’s interlibrary loan system is jeopardized. I tug at the strings of normalcy coming my way: a nurse’s trip to Des Moines a few springs ago and the city’s tulip beds; a friend’s email about dropping a car at airport for her husband; another friend reads Mary Oliver and sends me recordings; will my cat sitter eat whatever I’ve left in the fridge? Small things that stitch our lives together.

Spring rain:

telling stories,

a straw coat and umbrella walk past

~ Yosa Buson