Cancer Anniversaries: Everyday Magic, Day 1056

Cancer is often measured in anniversaries and fruit. We survivors often report in with our years out from the cancer after our initial diagnosis, yet in diagnostic land, we speak of tumors as big as grapefruits or plums.

Today is my third anniversary of being diagnosed with eye cancer aka ocular melanoma, which made me wonder how many years I’ve survived breast cancer. Twenty, and I think it’s a good thing to not have remembered my March 22, 2002 anniversary until now.

“Ordinary people stuff — that’s what you want to get to,” Dr. Stein, my breast cancer oncologist, used to tell me when I was in the middle of intensive chemotherapy almost two decades ago. He meant getting awful colds, flat tires, and bad haircuts, the random annoyances of a life not coalesced around cancer. That includes winking at cancer anniversaries on my way to get some groceries or scrub my bathtub.

While it’s a cliche to say anything can happen, it’s also wind-blown and bone-deep true. My first cancer — a common variety that I was prone to get because of family history and genetics — didn’t teach me that as much as the most recent one — a rare cancer that no one seems to know a lot about except that it tends to be aggressive and needs to monitored for years, decades even.

While there are hundreds of varieties of cancers, let alone various stages and nuances, my experiences were a bit of a study in contrast. I was Stage 2a breast cancer, meaning it had slipped the chute of the tumor (less than the size of a pea) for the hinterlands of the lymph nodes. What followed was rollicking but clearly mapped despite the sudden diversions.

The story started with a mammogram, follow-up imaging, and biopsy, then a lumpectomy, which I thought would land me in short-term radiation and a quick recovery. I cried on the phone with Dr. Jew, my breast cancer surgeon, when she told me of the lymph node involvement, but she also assured me, “Now we’re going to pull you up by your bootstraps, and you’ll be fine.” That’s what we all want to hear with cancer: we’ll be fine, okay, still here for the foreseeable future. What followed? Chemo, a BRCA-1 diagnosis (meaning I had an extreme chance of recurrence and ovarian cancer), and a bunch of “omy” ending surgeries: hysterectomy, oophorectomy, double mastectomy. Although I experienced many manner of ailments and some dangers (a lot like crossing the Fire Swamp in The Princess Bride), I was fine once on the other side.

Three years ago today I sat in a small, dark examination room with Ken and my soul brother Ravi when an ocular oncologist told me — after an ultrasound of my eyeball and contrast dye scan that involved staring into the fires of Mordor — it was a melanoma, and it was large (thankfully, she didn’t give me a fruit analogy). She had earlier said it was either that or a brain tumor, to which I replied, “Let’s just root for the melanoma then.” The wait between that conversation and the actual diagnosis was one of the hardest hours of my life, my mind drowning in scenarios of not a lot of time left on this planet I love so much.

But this cancer, unlike my first one, was not mappable. My new oncologist as well as my therapist and other wise people told me adamantly not to google “ocular melanoma,” and they were right (something I discovered when I did google it one terrible night). There are something like 27 stages and the mortality rate is high, all of which changes the language of statistics and detailed staging to something more akin to impressionistic art (which is also how my right eye saw and continues to see the world). While I didn’t experience much pain in my breast cancer road trip, this was an odyssey to uncharted territory, plus the eyes are delicate creatures. Two surgeries — one to insert a gold disk with radioactive pellets, and one to remove the disk — were post-anaesthesia excruciating, especially in a migraine-prone woman. Light hurt and it still does on occasion.

Although today is my eye cancer anniversary, I’m not sure what that means because I’m not clear (especially when I look out my legally-blind but seeing-in-its-own-way right eye) on when I’m completely in the clear. That might have something to do with having CT scans or MRIs every season for at least ten years, each one assuring me that there’s no micro-metastases to liver or lungs, and each one another high-five with the universe that I’m okay. But I am okay, years after my ocular oncologist said “I promise you, are you going to be okay.”

What it is an anniversary of is gratitude and love. I’m so grateful for all the people who love me and who I love who were there and still are with me three years later. My friends and family who brought over Ritz crackers and chicken soup, sat ten feet away from me outside during the stretch when I was radioactive and hurting, listened late into the night (especially Ken, who was my real-time, all-the-time greatest supporter), and talked me down from trees of fear. I’m so grateful to be here and so in love with this life, right now full of teenage-sized leaves blowing hard on Cottonwood Mel, bright clouds and contrasting deep blue skies. It all reminds me how good life is, each day an anniversary of getting and being here.

My Friend Vaughn and the Walk to the House Down the Road: Everyday Magic, Day 1054

“Vaughn keeps talking about the house down the road,” Julie, his wife, told me just a few days before he died. I listened on the other end of the phone, looking out the window from my room at the Writers’ Colony at Dairy Hollow into the quickly-accumulating snow on the roof. I was hesitant to have come to Eureka Springs, Arkansas, not wanting to leave my dear friends Julie or Vaughn, but it also felt like the right thing to do although most of the regularly-scheduled things of our lives make little to no sense when death is imminent.

Vaughn I’ve known for so long I can’t remember when we met, but surely in the early 80s, and Julie became a fast beloved friend a dozen years ago when her adventure with Vaughn brought her to us. I thought I had a good sense of Vaughn, but I got to know him even better at the end of his life when he actively helped me write his obituary (you can read at this link) over hig last month in between talking through songs, poems, readings, and speakers for his Celebration of Life, which I had the honor of officiating Sat., March 26. The obituary and the service were long, winding, full of deep notes and soaring voices, wild stories and vast memories, just like Vaughn. Then again, any life, especially one lived with vibrant gusto, and admirable affection is a infinite unfolding.

Vaughn especially made big differences for many of us. Vaughn has changed my life, including in one small and one enormous way: red cowboy boots and the farm. When I was diagnosed with eye cancer, I wrote a pithy blog post about being back at the cancer rodeo, and all I needed now were a pair of red cowboy boots. “Then she shall have them,” Vaughn told Julie. Within a week, Vaughn and Julie were walking from their car to our house carrying a large box. They fit perfectly.

The farm, however, is something too big to fit anywhere although somehow it’s in our arms after being only in our hearts for years. When it became possible (although seemingly highly improbable) for us to purchase the land we’ve been trying to save for 35 years, it was Vaughn who gave us the guts and gumption to believe we could. He first brainstormed with us about building an ecological small housing development on part of the land, and when we all realized we had no idea how to actually do that, he was game to help us with financing. His willingness was a strong enough bridge that it led us to imaginative and sustainable financing beyond him. While we might have gotten there on our own, Vaughn’s passion for the people and land he loved sped us toward our destination in time for all the pieces to come together.

Vaughn’s death on March 17, shortly after I got home from Arkansas, brought relief, heartbreak, calm, beauty, and the big mystery of grief all together for many of us. He died in Julie’s arms with his his dear friend Danny and Julie’s wonderful daughter Becca around him. Shortly afterwards, Ken and I drove over as the full moon set to help prepare the body for his green burial. The room was full of calm, love, and peace, and being part of such sacred moments is surely one of the more important reasons we’re alive.

But in the time between his death and burial, I felt discombobulated and confused, uneasy and not really wherever I was supposed to be. I remembered how, when my dad died, the Colombian rabbi who got to know my dad told us that the time between death and burial was an immersion into limbo (one reason, he explained, Jews bury their dead so quickly). He added that we don’t officially become mourners until we lay the body to rest.

Saturday, when Vaughn’s friends and family lowered the biodegradable coffin into the living earth, then we did our burial ceremony, ending in filling in the grave, I realized we as well as Vaughn had made the journey to the house down the road. It’s lonely and little empty not to have him with us, but there’s so much to remember, including how I played John Prine’s “I Remember Everything” for him recently, and he said to make sure that was in the service also.

Here is the poem I wrote for him when I was at Dairy Hollow, right after speaking with Julie (and yes, the ending is a nod to the John Prine song). May we all find where we belong, and when it comes to our loved ones, carry what we remember into the house where we live now.

Walking To the House Down the Road

for Vaughn, 3/12/22

Of course it’s a house for you who loves

to build and rebuild the uninhabitable

into homes of music and good food.

Winter makes it harder, especially

when false spring turns to thunder snow

and sheet on a Sunday afternoon.

But leaving when blossoms clutch

the sky or when summer nights fill us

with lightning bugs and katydids

would be harder to leave behind

in this house of a life, each packed box

a decade overflowing of who you still are

and will always be even down the road.

A dog barks from the kitchen. The last

of the snow drops from the branches

while the steps to the last place you live

dampen in the sheen of old rain.

The birds come and go, whole flocks

of red-winged blackbirds, twisting

murmurations of starlings just

down the road from here

to where you’re going without

leaving this bed, with leaving this bed

like breath or time. But we can’t

say that, bear that now while you still

sleep or reach up to kiss again and

never enough. Love is a well

with no bottom, a weathervane

in the wind, an oak so heavy

with yesterday’s snow that it can’t,

it has to, let go, but love is also

what makes it possible to let go.

The lights in the house down the road

are already on for you, the door already

just a little ajar, the road between there

and here made of gravel, watching, weather,

one story to step into after another,

each say saying, don’t go, each

answering, I love you, it’s okay,

we remember, we will remember

everything.

Finding Kansas (and That’s All She Wrote): Everyday Magic, Day 1049

A KAW Council campout at Lake Kanopolis in 1982 with, from left, Dan Bentley, the late Mark Larson, Kelly Kindscher, Victoria Sherry, me, Suzanne Richman, and in front of us, Joe Greever, and behind us, Ken Lassman, Shannon Greever, Larry, and Dave Ebbert

I was lucky: I found a place that made a satisfying click when I set foot in it, and I knew.

It was April 30, 1982, I was living in Kansas City, MO at the time, and I had never been to Lawrence. In fact, the furthest west I had been was KCK (Kansas City, KS). With my friend Ira, I was heading toward the first Kansas Area Watershed Council gathering, just 15 miles west of Lawrence. Ira and I liked to talk, and at the time, we had some weeks of life details to catch up on, so trying to head out from Kansas City, we missed the exit to I-70. We went around the maze of highways to take another shot at the exit, but talking so fast and much, we missed it a second time…..and a third time. It turns out the fourth time was the charm.

“I want to stop in Lawrence on the way,” Ira told me. There was a great band playing in South Park, the fabled Tofu Teddy. So we did and we danced. It was relatively warm out, sunny, and the world felt light and easy. Then we were hungry, so: enchiladas. Then it was dark, and we decided to spend the night at a friend of a friend’s house, a bungalow in East Lawrence. There were a few extra bedrooms, and whoever owned it was out of town.

Climbing the stairs to the porch of that bungalow on that spring night, lilac, dirt, and wonder in the air, I felt the weight of a voice on my right shoulder. “This is your home for the rest of your life.” A click of recognition went through my body, and I slept soundly that night. The next morning, we would get to KAW, where I met some of the people who became my best beloveds for life, including Ken, who became a good friend, then the love of my life.

Cobra Rock while it was still standing

I also fell hard for Kansas, and I’m still falling. Not just Lawrence, which of course I adore with all its artsy, activist you-can-make-anything-happen-here (but you might not get paid much for it) energy, but often-ignored corners and crannies of the state. Having roamed Kansas widely, as a visiting scholar for Kansas Humanities since 1992, and later, as a Kansas poet laureate — not to mention all the KAW Council campouts in caves and fields, sleeping bags unrolled under Cobra Rock before it collapsed or in Hutchinson living rooms — I’ve seen a lot of this place. But not nearly enough yet.

Put me on a long drive through the Flint Hills or even across the much-maligned Kansas chunk of I-70 going through ranges of hills and high, dry places where you can see 100 miles or more, and I’m a happy camper (sometimes literally). Serve me what surely feels like the official Kansas dinner of fried chicken, mashed potatoes, and corn, and I’m thrilled. Add some fresh apple pie, and what could be wrong with this ailing world?

I’m often enthralled with the communities I’ve dipped into even if they sometimes/often contain people who vote in ways that are incomprehensible to me. I have yet to spend time in any small Kansas town without glimpsing some wild quirks and beyond-any-stereotype humans. “Here’s the master key — just go through every room you want in the hotel and choose whatever you want,” the receptionist at the beautiful, vintage, and haunted (as I soon found out) Midland Railroad Hotel once told me (turned out the whole third floor was once a chicken coop that supplied dinners served on the first floor). I can’t visit Pittsburg without discovering yet another bevy of poets, and I’m sure that town has has many poets per capita as any place in the world. I dig the leftover famous tree stumps in Council Grove and visionaries I’ve met in Garden City. I’ve encountered opera singers on the street, abstract painters who took over old bank buildings for studios, and I even stayed in a grain bin transformed into a bed and breakfast filled with kittens. I’m delighted with the infinity of birds that cross and roost in the flyway as well as all other other wilds ones I’ve seen — bobcats on rare occasion and wild turkeys and massive crows regularly, and once, even a cougar.

I love the expansiveness of this place, the big skies that felt and still feel like the perfect balm for my crowded mind, and after many years, 40 this spring, the exterior has infused the interior. My thoughts and thinking feel less compressed, frenzied, and way less tortured than when I first climbed the steps to that bungalow. I’m home here, and the thing about homecoming is that it’s a continual unfolding and practice, a life-long love affair with being where and who we are. Thank you, Kansas, and hey, Happy Kansas Day!

Small Sweetnesses in a Dark, Cold Time: Everyday Magic, Day 1048

At Checkers, our big locally-owned grocery store the other day, the check-out lines snaked across the frozen food section with six or so of us in each line, spread apart because of the pandemic. There were only three lanes open when the floor manager came to the lane beside mine and signalled the man in front of me, a 60ish fellow in Chief’s jersey who I had been running into, first in produce, then in eggs, and later in the baking supplies aisle. He scooted over to check out in the new lane.

But then the floor manager, a young woman who didn’t seem to have a lot of confidence in her decisions, suddenly decided she shouldn’t be checking people out, so she closed the register she just opened. I signaled for the guy in the Chief’s jersey to get back in front of me rather than go the end of a growing line of socially-distanced shoppers.

A minute later, he turned around, smiled, and said to me, “What’s your favorite candy bar? I want to buy it for you to thank you.” I said thank you but no thank you, patting my stomach. “Me too,” he said, patting his stomach, and we laughed, talked about how Jim Lewis, the wonderful guy who started this store, wouldn’t have been happy with the floor manager’s actions, and went back to the task of unloading stuff on the conveyor belt.

Pushing my cart out to my car, I thought about how this was a small sweetness, an encounter with a stranger, nothing special, but in this time of keeping far from each other and on high alert for any coughing around us, this was especially sweet. You could say I should get out more, but in a pandemic, that’s not much of a possibility. Yet despite my social life with humans beyond phone and zoom mostly taking place in grocery stores, all of us wearing our KN 95 masks (I hope), there was something very human and reassuring about the experience.

Last week, I had a wonderful exchange with a man from Uruguay at Target at the check-out stand where he worked. We both loved rainbow-y scarves and were each wearing our best versions of the ones we owned. We talked about how neither of us could have imagined how we’d end up in Kansas, but we love it here.

At yoga class this week, heavily-masked and keeping our mats far apart in the big room, I marveled at my son Daniel’s handstand while he was impressed at how long I held a headstand. “Hey, how you doing?” we said in our muffled voices to each other at the end of each class as we layered up for the cold blast just outside the door. Small things, but in a time when such things are rare, these little exchanges are sweetnesses dotting the week.

Like right now: it’s 16 degrees but sunny. Our well-insulated dog has chosen to lie in the sun while our laundry freeze-dries on the line. It’s a flourish, a quiet note in the overall song of the day, but a sweet one. When I can get out of my own way, this is where I choose to put my attention.

The Call: Everyday Magic, Day 1057

Why a sunflower? Because it’s what blooming right now, and it follows the call of the sun, which is loud and blaring too.

This morning, I gave a short talk at the Lawrence Jewish Community Congregation’s Rosh Hashana service on Shafarot, a calling to live with greater awareness and purpose, to examine what we need to change or release or summon our courage and strength to do, and to be more of a mensch. I ended up, no surprise given the subject matter and how I grapple with things, writing this poem.

The Call of the Shofar

It is not just the old call in the bones

and quiet of memory, the temple

falling, the exiles returning,

the temple rebuilding itself

through our hands and acts, the readying

of whatever clearing—right outside

our front door on a hot September afternoon

—welcomes the presence of what

we cannot name but names us.

The call of the shofar is a question,

staccato as cicadas or long-necked arching

into the sunset tonight. What is here?

It asks. Who? We might answer,

or just as misguided, Why?

But all such music—part animal,

part wind, part invisible, part visible

even if we miss it—is always

a conversation. Did you hear that?

Each inhalation a slip of sound

we finally grasp, Each exhalation a surrender

to how little we know, especially about

the confluences of our own voices so far

behind us, around old bends that shape

our hours now, so far ahead of us into

the chatter of babies or birds, the rush

of storms through the fields of the future,

the sound of the shofar running

or stilling itself like water,

like this river of life.

Lightning maybe. Thunder.

A flash of clear blue again. Quiet.

Then the call and response we are made for:

Let your old temples fall.

Raise your eyes. Return.

Listen. Listen Listen.