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.

Two Years Later and What Will be Two Years From Now?: Everyday Magic, Day 1053

A photo I took two years ago

It all changed March 13, 2020 for many of us in this country. That Friday the 13th was auspicious in ways people like me didn’t see coming. The pandemic had reached a threshold, and on a dime, we started shutting things down or readying ourselves for the consequences of staying put in our homes and fear.

Kelley Hunt and I were in the middle of putting the final touches on an all-day workshop bringing people in our community together to write songs and stories of the East Lawrence neighborhood. When I called her and said we had to cancel, she said she was thinking the same thing. Never mind the piles of cold cuts, and fresh bread and notepads we had assembled. We would have to work with people a different way to complete this project.

We all had to find a different way, moving at triple speed to bring our work into our homes and over our screens while the days extended in triple slow motion. Wasn’t March of 2020 over 72 weeks long? Wasn’t each day a week of trembling throats and scared stomachs? Wasn’t each night punctured with insomnia as so many sat up in bed, asking ourselves or whoever shared the bed with us — human or cat or dog or ghost — the impossible questions. When would this end? What was this? Who would it hurt or kill? Would we be okay? How would we find a way through?

As I type this questions, I recognize how far-too-relevant they are for Ukrainians right now as their cities and towns, hospitals and military bases get bombed and shelled, as the Russian troops encircle and threaten what was once a normal country living its normal life. The wolf is at the door, and he’s armed to the hilt with no vaccine possible against such evil.

These are times — pandemics and wars — that break open our hearts to show us what we’re made of and expose all the cracks. These times also stop our thoughts and thinking in their well-worn tracks. We just don’t know. We just didn’t know two years ago, and we have no idea about what will or won’t be resolved, and how, and where it will land in two more years.

But we do know how important it is for us to tell our stories, write our poems, sing our songs, so often each one a lantern in the dark. I don’t think it’s any coincidence that life found Kelley and me in the middle of facilitating people to do just that on March 13, 2020. Just today, Odessa-born poet Ilya Kaminsky wrote in “Poems in a Time of War,” that when he asked an older friend in Ukraine how he could help, his friend replied, “Putins come and go. If you want to help, send us some poems and essays. We are putting together a literary magazine.” Kaminsky reminded us, “In the middle of war, he is asking for poems.”

I would add do whatever you can that helps and helps you find your courage and voice.

Love and Death in February: Everyday Magic, Day 1050

“Maybe since January lasted for seven and a half years, February will be easy,” I said to my friend Kris. She was doubtful since February, for us and many others we know, tends to be the longest and hardest month. Never mind the 28 days of it, February is notorious for slipping the bonds of time dragging us into a morass of sadness and fatigue, dying and death.

So far so good, I told myself a week ago, but I rationalized too soon. In recent days, we got the news that one of our dearest friends is going on hospice, and the anticipatory grief and very current despair about the rapid meanness of his cancer trips me from laughing to crying on a dime, especially for wife who loves him so utterly. An old friend I haven’t seen in over a decade died suddenly two days ago. Ken’s wonderful dad died on Feb. 10th in 2009, and a year early, our good friend expert pie maker Weedle died on Feb. 12th.

That’s just us, and I know many close ones who have their own string of February impossible losses and big swaths of grief. It makes me wonder, if we have some say over when we give up the ghost, whether the bitter dregs of winter have anything to do with it. February also tends to be when the worst ice storms or blizzards hit, seemingly out of the blue, but maybe it just feels like that by this time of the year. It’s been cold too long, even with global warming and some surprise 60-degree days, yet spring seems far off.

February is the squeaky door that doesn’t close properly between love and grief in real time. It’s a time of year when I see up close how much deep and unconditional love we’re capable of, despite what we believe of ourselves. A friend just posted on Facebook how caring for her dying husband is stretching her to her seeming limit only to realize she can stretch further. Another friend texted me, “How do we bear the unbearable?” and then a photo of her beloved’s face full of joy as his childhood friend kissed him on the forehead.

We get through the unbearable together. We stretch ourselves in inconceivable ways. We stand on the threshold of February looking back and looking forward but mostly just looking at what we can see here. Like yesterday, while taking out the compost in the hard chill of the air, when I noticed the first crocus, papery and white, blowing hard in the wind but staying intact low to the ground. Like February, especially this year.

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.