Chemo ride…

… took a bitch turn. Dreaded day 5 passed (thank goodness for the amazing anti-nausea meds), but with the last bag of this poison/healing fluid, a fist immediately grabbed my chest and squeezed my breath. My cheeks coursed with blood.Terror, say the word, terror. So much back and forth, oxygen and treatments and more liquids through this purple spaghetti plastic that drip, drip, drips near my heart. I shook fiercely – rigors – the nurses said. I was stuck on the word as my molars hammered, rigors!, where is this hard ride taking me? The fluid was stopped with a promise not to start again until I knew.

In and out of a fog, a dream of a herringbone jacket with a pleated flair my youngest wore as a two-year-old. In the evening, a nurse sits with me. As the drip-drops begin again, she talks, right beside me, watching me, close eye, about this disease, about infection and rest, about what I will need to do and avoid – do not knick your fingers with a knife, no dirt, no cat litter, no flowers, no illness. I ease from tension and realize, yes, yes, I am still breathing, I am still taking in this toxin that quite possibly will save my life. I glance up at the round analog clock on the wall that reminds me and my brother of school days. These are the moments Burlington’s Phoenix Books is hosting the Almanac intro in an online event. In my haze, I imagine the Almanac editors and reading and answering questions, this book filled with farm dirt and blooming flowers, hay chaff and sneezing, insects and sheep, and stories – so many stories – of people working on this northern place on the globe. In my half-dream, exchanging novels to read with this steady stranger, I feel my place in the world opening up, both descending into the long trek of illness and healing and, miraculously, an upward course, too, as this illness strips me down. Your bone marrow, the stranger says, marrow, a word I love and have been content to let lie, bone marrow doing its bone marrow thing. All this is changing, too, from nature, from medicine, from my fierce intent to reclaim my body.

All of you who have traveled or will travel this journey, bone marrow and rigors and fear, how simultaneously far and yet close this feels, all of us.

….. Everyday, a dear friend texts me a poem read in her clear strong voice. Here’s Rilke’s “Let Darkness Be a Bell Tower”

Quiet friend who has come so far,

feel how your breathing makes more space around you.
Let this darkness be a bell tower
and you the bell. As you ring,

what batters you becomes your strength.
Move back and forth into the change.
What is it like, such intensity of pain?
If the drink is bitter, turn yourself to wine.

In this uncontainable night,
be the mystery at the crossroads of your senses,
the meaning discovered there.

And if the world has ceased to hear you,
say to the silent earth: I flow.
To the rushing water, speak: I am.

Sonnets to Orpheus II, 29

December, Holy/Unholy/Holy Season

Anyone who lives in a northern climate must inevitably come to some reckoning with the descent into this month’s darkness, the steady whittling away of daylight at either end, noontime oftentimes scrubbed to a soapy haze.

To my surprise, this month began on an ascent for me, an elevator rise at the end of November, crammed into a silver metal box on a gurney with my weeping daughters and brother, and an anesthesiologist who might have drawn the short straw to collect the patient in the otherwise sleeping hospital. He was actually assured me he was a much better anesthesiologist than a gurney driver. Bring me back safely to these people, I pleaded.

Here at Dartmouth, I’m in a major medical facility (of which I’ll someday write much more). There’s no illusion that this is giant Health Care. Within this, my tiny 4’8″ body and the fraughtness of grave disease and uncertainty, and so so many patients. Yet all these interwoven days and nights, I’m surrounded by an arch of kindness, by skilled and unskilled staff who labor so patiently. I’m humbled by this secular holiness. The respect is repeated among colleagues here, aiding each other (and all us needy patients) with their own thank you, thank you as they work together.

A friend, driving home to Vermont from family Thanksgiving, leaves me Time of the Child by Niall Williams. Late into the night I read, taking these hours to relearn the slow joy of novel immersion. Sleep, sleep, I urge myself, and yet Williams’ world entrances me. Here’s line from this novel that an elderly Irish country doctor remembers from his doctor father: “The sick are ourselves, was a thing his father had said. When you stop understanding that, take your name off the wall and throw your bag in the river.

…. Whatever way this month transpires — for rise or for misery — and it’s all holy, isn’t it, this sacred and profane mixture of spirit and blood and bowel. The journey itself we take together is the gem.

Although I will say, I was ineffably joyous to return from that dismal night and see my curved-to-exhaustion people. After all, I am in the only one in our household who devours the cold leftover French fries with gusto. Why would we waste cold potatoes?

Thank you again, all.

Hay strands for sheep, purring cat, Harry Potter chocolates for neighbors.

Now in my fifties, I’d lulled myself into believing my risk-taking days were sewed up: those early 20s of getting in the old Volkswagen for journeys of thousands of miles, buy a decrepit hunting shack and convert it into a home, severe a marriage soured terribly and fear he might take your life in retribution — all that time of selling the maple sugaring equipment (who to trust, how to cut a hard deal?). So jaywalking suited me just fine. Waking long before dawn to feed the cats and drink milky coffee, write and watch the sun rise, that streaming beet juice.

As if I held all the cards in the risk-taking plans, anyway. Now that thread of riskiness has spread to those beloved around me, too. More and more, I understand my learning to craft a honed a sentence or the deep pleasure of watching a cardinal pause on a branch, are my steadying rituals of rooting me meaningfully in this world. I have friends whose lives center around sheep and chores and woolly affection, in ways that transformed their lives. Chicken and horse lovers. My sister-in-law with her two goats.

As I write from Room 101, I haven’t forgotten that the world spins on. Last night, I listened to VTDigger’s Dave Goodman’s follow-up conversation with Elizabeth Price, mother of Hisahm Awartani, one of the three young Palestinian men who was shot in Burlington, Vermont, a year ago. The Gaza war reigns. The American presidency shifts.

In Room 101, so many stories of people come my way — the night nurse who studied for two years in England, near the beach, transcontinental; how transport folks and nurses made their to live in New Hamsphire and Vermont, often from places around the country. What do you like here? What have you found? I keep asking, curious to know what roots people in their lives.

The smaller world spins on, too, with its things both miserable, joyous, and pleasurably mundane. Your own rituals of offering hay to sheep, fingertips to a cat’s purring head.

Last day of November, the month of cancer in my world. A year ago I bought Harry Potter chocolates for the neighbors’ boys and waited in the dusk for the three laughing boys to appear around my woodpile. The Good Doctor tells me I will go down, down, soon, and then rise to where I once felt well. What would that mean? I’m hanging on to this unrealized promise.

I repeat. When I go down, I will re-emerge.

The awful, the reprieve, Maurice Sendak’s chicken soup with rice.

Snow falls early on this Thanksgiving morning. The nurse wakes me for meds and vitals. I am eighty-four miles from home. My window looks out into a courtyard with a fan of three white birches. In a wind, their papery bark ripples in the breeze. Nearby, an office window glows where someone is already working.

I am here for a haul. My daughter brought me the striped blue and green quilt from my bed, the worn hand-me-down that reminds of home.

Monday, the pain and awfulness returned. My daughters drove me not to the local ER this time, but down the interstate, the two of them in front, me in the back with a pillow staring out the window, to Dartmouth-Hitchcock. At the ER, they took blood, asked my story. Someone in the waiting room, who must have been a frequent flier, had been waiting for four hours was threatening to leave to get something to eat. The nurse said she couldn’t go. I was sent out, waited less than four minutes, and was taken in for antibiotics and saline and pain meds, another CT scan.

An MD, a second. An oncologist who explains slowly that the lymphoma I have often responds well to treatment, so reassuring. This raging infection. I am taken upstairs. My daughters, folding with exhaustion — it is now late again — head back up the interstate. Shortly afterwards, the oncologist returns and bends down to look directly at me, eye level. I know this position means bad news again. In the three-week span of CT to CT, the cancer has grown and possibly eaten into my bowel. Surgeons will be in shortly to speak with me about emergency surgery to remove a section of bowel. My thoughts immediately surge from Thank god, I may be alive in May with my family and see blue squill bloom to Are you fucking kidding me? It’s the middle of the night.

Middle of the night or no, the surgery team comes in and out, talking, talking. The lymphoma renders the CT scan unclear. Because my mind works this way, I size up the head surgeon: she’s long experienced in trauma and general surgery. Her fellow tells me he’s been working with her for six years. She tells me so much, all the terrible — and these are devastating — things that could go wrong me for in the next few hours. In the end, I trust my life to her. It is the only course.

I call my brother. We call my daughters, who have not yet slept. My brother gets in his black Subaru. My youngest drives our red Subaru and drinks a quart of cold coffee, a more experienced driver than her sister after a cross-country trip this summer. Is the moon guiding them? I don’t know.

In the OR, a woman whose name I don’t know holds my hand as I instantly go under. When I wake, so confused, in an enormous dark room — it’s the still the pitch of night — I immediately lift my jonny and look at my abdomen, asking what happened? My flat abdomen has no huge bandage. The surgeon had gone in with a camera and decided what remains is sufficient, for now perhaps, forever perhaps, to change perhaps. My oldest showed me a photo she snapped of my family curled in the empty ICU waiting room, sweatshirt hoods over their heads. Let me write this: what a hard awful night, and how much worse it might have gone.

….. Then, that morning, in and out with the surgery team, with phlebotomists, nurses. The lymphoma oncology team arrives in a pack. The lead pulls out a chair, tells us to record, and begins talking. He’s brilliant and confident without cockiness in his ability to cure me. He outlines that complications of infection and my bowel will keep me here for the first chemo run, deep into dark December. I decide to do exactly he tells me.

My family again leaves. My daughters refuel with fast-food chicken and sandwiches for their drive. I sleep and wake in a drenching fever, which creates a flurry among the nursing staff. They come in and out. Somewhere in the miasma, I really wake up and decide to pull myself together. I’m going to be here for month, and I need to quit feeling sorry for myself. A nurse tells me to eat some chicken soup with rice — remember Maurice Sendak? The soup is delicious. The fever breaks. I survive a ten p.m. MRI — a blind descent into a cave where dwarfs bang around me while Freddie Mercury sings.

This is a long way of writing a fragment of how I arrived here, medical center land, not a Thanksgiving morning where the kitchen is savory with sage dressing, and I’m out in my boots, admiring the first downy snowfall in my garden. Living is a nonstop risk, the whole she-bang, but we don’t always tread such a thin pinnacle. By chance, as I packed my laptop and socks for the ER trip, I stuffed in the Vermont Almanac that had arrived in that day’s mail. Later, when I had decided to embrace where I am now, I opened the envelope. This volume, as the others, is exquisitely beautiful. A phlebotomist arrived to take blood. She admired the cover — especially the view of the mountains through the window — and she told me a little of her story from rural Vermont to Lebanon, New Hampshire.

In editor Dave Mance’s opening, he writes, now post-election, how we might return to embracing the complexity, rugged and elegant, of the natural world and our very lives. (Gracious, when I’m able to untangle myself from cords, I’ll update with his poetic words from the book just out of reach on the windowsill.:)

Complexity is precisely where I am, enmeshing in this crazy mixed-up jumble of the medical system’s turbo drugs and powerful machinery, the stories of the people who labor here, a nurse training for her first half-marathon and another with three young sons, welcome news of a friend’s first grandchild, my own energetic and loving family.

All of you, too, on this Thanksgiving or perhaps just a plain old weekday morning — in our lives, how much we’ve chosen and so much we haven’t — gratitude for being alive in this world. For chicken soup with rice.

Cat justice, homestyle.

A friend stops by with a gift of a stunning orchid. My naughty cat, Acer, immediately jumps on the kitchen table, and I swat him away. He lies on the couch, glaring unhappily as we talk. Gorgeous flower bouquets have come my way, been lavishly admired, then sent home with others to enjoy without cat destruction.

But the orchid is so stunningly beautiful I want to keep her. Later, I set this flower on the bathroom counter and shut the door. Acer is still sulking on the couch, paws stretched out before him, the epitome of cat depression, really hamming it up for my youngest daughter who mollifies him with kitty treats.

The cat and I: we are at odds. This morning, I let him into the bathroom. He sits on the counter, hungry to the core of his being to shred these velvety petals. In this new cancer world, my constant checking of time — my furious need to get stuff done — has instantly vanished. The mock orange outside the window sways in the breeze. Mid-November, this gloom is as much brightness as we’re going to get today.

Acer has no need to explain his position to me; his furriness is tense with desire. I pet his head and explain my infatuation with the orchid, which doubtlessly Acer dismisses as a weak case. And the orchid herself? Surely she wants to keep her own amazing life, both svelte and voluptuous.

The outcome is nearly certain. I’ll have to let her go. But for now, the house is warming with the wood stove, daughter sleeping upstairs, and — accusations of cat injustice be damned — just the right amount of ethical challenge and beauty, for ten minutes or so.

Cancer, Election.

In 2014, my sister was diagnosed with cancer (now healthily in remission), and I read The Emperor of All Maladies: a biography of cancer by Siddhartha Mukherjee. My marriage also fell apart that year, and I remember reading this fat library book in my car at school pickups, waiting for a job interview in Burlington, on benches waiting for court appearances. It’s a hefty book, with a lot of reading hours.

Three weeks into this flipped-upside-down world, my former life is already receding. I’ve been so surprised and grateful for the effusion of calls and emails, friends stopping by with food and gifts and simply to talk, to share news of their own world and listen to mine. I realize now how carelessly I had ebbed into a cynical place these last few months while the cancer was growing in me, weakening me.

Sure, it’s true that people sometimes give into the uglier strands of lying and cattiness and gossip, of insecurity and strange ways of playing people against each other — and sometimes engage in far worse things. In my Shire of Vermont, I see my decent state struggling with what’s playing out in national politics — and the looming threats. Which made me think, again, as I lay in bed listening to the rain this morning, how our individual lives reflect the greater society. Don’t waste your few days on junk and despair, those adolescent tricks. And thank you, all, for surrounding me with such light.

From Philip Larkin:

What are days for?

Days are where we live.   

They come, they wake us   

Time and time over.

They are to be happy in:   

Where can we live but days?