Back at the Cancer Rodeo: Everyday Magic, Day 972

Self-Portrait With Rainbow & New Cancer Diagnosis

When I had breast cancer 17 years ago, I learned some things about resilience, the ability to bounce back. There’s nothing like being thrown off a bucking bronco to discover that yes, you can hit the ground, hard, and yes, you can hobble back to your feet and strength. There’s also nothing like community and all the love that made me upright again, then fed me homemade soup at regular intervals.

In 2002, I discovered I had breast cancer, lymph node involvement, and also the BRCA 1 genetic mutation — which increases the risk of breast cancer, ovarian cancer, and other cancers (even melanomas, like what I now have). There were three big surgeries, akin to holding onto a mechanical bull in the middle of a tornado,  surrendering to the anesthesia, and waking up to nausea and clear skies. There were also months of chemo, mounting one unbroken pony  after another with the certainty that I would be thrown off and I would throw up, and my white cells and mojo would plummet. I’d be overtaken by a numbing white sleeve of sleep at any moment interspersed with steroid-induced  closet re-organization at 3 a.m.  Ken, my family, friends, and big community love got me through, filled our refrigerator with blintzes and chocolate pudding for the six months of chemo, drove kids to and from piano lessons and hospital visits, brought me a TV and VCR (we had neither beforehand) so I could zone out on Steve Martin movies, and talked me through fear storms.

In the years since, I’ve understood that the cancer rodeo grabs hold of many of us as patients and just about all of us as people who love people with cancer. Having facilitated writing workshops for people with cancer and other serious illnesses at Turning Point in Kansas City for the last 17 years, I’ve also seen miraculous displays of grace: people who find the strength to open their hearts to life and make new meaning. From all of this, I’ve learned a few rodeo tricks and tips from the pros:

  • Generally, the hardest part is the excruciating limbo between “you have what sure seems like cancer” to a precise diagnosis and treatment plan.
  • New and mind-blowingly innovative medical treatments are coming to fruition all the time.
  • Energy healing and other forms of healing (whatever works for you) — acupuncture, massage, yoga, nutrition, walking with friends, laughing our asses off together — at best can spark startling revelations, and at worse, can dissolve incapacitating fear.
  • Denial is not a dirty word: it’s a necessary coping mechanism along with dimming the harsh lights of what’s likely ahead for us. We can’t live fully while carrying a backpack full of big rocks all the time.
  • Statistics are somewhat meaningless in the intimate space of being alive as a singular person connected to other people in the here and now. I’ve seen people with stage 4 cancers kvetching and sharing jokes 15 years out, and I’ve seen the opposite, too.
  • Cancer doesn’t change who we are; nor does treatment. I feared I wouldn’t still be myself on heavy doses of chemo, and yet I was totally still me, maybe even more so. Big dances with mortality reveal to us more of who we innately are, and that is a priceless gift of perspective.
  • There’s incredible good company at the cancer rodeo: people with the best senses of humor and get-up-and-go gumption because of close encounters with the life force. These are the best people you’ll ever meet or even be.
  • No one is immune to mortality.

Which leads me to now: some fuzzy vision in my right eye and a lot of blinking since March led me to an excellent ophthalmologist, Dr. Brown,  who, after two hours of shining lights into my eyes while having me look right or left and taking various images, had to tell me there was definitely cancer there. My stomach plummeted, and I felt the floor fall away. The rest of the day included talking with my wonderful integrative physician, Dr. Sandal, and my fantastic oncologist, Dr. Soule, in between a lot of phone calls, numbness, loss of appetite (a rare thing for me), occasional freak-outs at what wild animals I would have to ride and fear over if I would get to the other side intact. I also petted my cat a lot.

Yesterday, Ken, my soul brother Ravi, and I went on an inner space mission to Dr. Desai, a superb ocular oncologist at St. Luke’s Hospital. Did you know they can do an ultrasound of your eyeball? I know that along with how contrast dye of the eye produces clear images and that if you subtract the shortest man in the world from the tallest, you get Shaq O’Neal (“Who Wants to Be a Millionaire?” was booming in the waiting room). The extreme possibilities were extremely dire, and while I won’t know for completely sure if the rest of my body is clear until after the PET scan and brain MRI, when Dr. Desai said it was a treatable melanoma, I burst out crying in relief.

What’s next is a tiny gold button full of radioactive pellets planted behind my eye before being removed five days later. Then, aside from potential and probable long-term side-effects and vigilant monitoring for the spread of micro-melanomas, I’m done with this rodeo, and maybe with the cancer rodeo circuit for good…..or not, which is a big reason all this can be so scary.

The view from here

Now it’s time to ready myself for the rodeo and other metaphoric renderings of what’s ahead, knowing I will find a way through thanks to dedicated medical professionals, gifted healers, and especially my best-beloveds, particularly Ken, who gets to go with me yet again through a mess of tests and challenges. While I don’t own a pair of red cowgirl boots, I can barely ride a horse, and I can’t yodel to save my life, I can be brave enough to let all these people and procedures save my life. Then, probably sometime this summer, l’ll be on the other side with a more resilient spirit,  more grateful heart, and maybe a cowboy hat too.

Thank you for reading this and being with me at the start of all this.

 

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Surprises From 2018: Everyday Magic, Day 960

“So instead of New Year’s resolutions, I drew up a list for 2019 of experiences that had already passed: a record not of self-mastery but of genuine surprise. 1. My oncology nurse became a dear friend. 2. Even in the hospital I felt the love of God. 3. Zach is under the impression that I never get tired. These are my small miracles scattered like bread crumbs, the way forward dotting the path behind me.” — Kate Bolwer

Surprises around the bend

In reading Kate Bowler’s evocative essay, “How Cancer Changes Hope” and revising poems for my next book, How Times Moves, I’ve been making a U-turn from manifestations for the future back towards surprises from the past. What delights me most in life — and maybe you too — is exactly that: how something far better and more amazing happened than what we pined for, depended on, or planned, like right now when, in middle of writing this, Bruce Springsteen’s “Surprise, Surprise” starts playing on KCMG (my large itunes collection).

My moments of genuine surprise include these which all happen to be moments of education too:

  • I realized, while in the bathtub on Memorial Day, that I was going on leave from teaching after measuring my life in semesters for 33 years without a break in the pattern. Further thickening the plot, about a month into my leave, I caught myself up on how my soul had actually decided not just to take off a semester but a full year. A corollary surprise was that I had organized enough extra work and income to take such an unpaid leave.
  • One-on-one coaching is so much akin to holding someone’s hand as we step into the wild landscape of their creative callings. It’s also something I love doing.
  • I’ve fallen more deeply in love with Lake Superior, my husband’s laughter, what a crockpot can do, all three of my kids, walks along the curving perimeters of cedars on shining days, yoga, the pink shimmering ring around the full moon, making art (parfait dyeing, sculpey, watercolor pen play, etc.), homemade butter, reading, long lunches with dear friends, mackerel clouds, Call the Midwife, Shay the Dog and Miyako and Sidney Iowa, the cats, and music I hear, witness, and make.
  • The death of a very central being in our family — my mother-in-law — isn’t at all what I dreaded it would be, but instead a panoramic immersion in fierce and tender emotional states, all lit from within by love.
  • Each of the 25+ reading and workshop I did for my novel Miriam’s Well felt completely new and alive.
  • Ecstasy, or at least some dose of contentment and satisfaction, is readily available to me when I embrace the seasonal tilts here and now, whether driving up autumnal mountains in Vermont rich with goldening maples or looking up into the snow dazzling down in Kansas or walking to the edge of a peninsula on a cold day in Madison or sitting on a sweltering porch on a too-still summer day full of birdsong and cicada roar. It’s even available right now on a blank-sky day while the rain bounces off the deck outside and the cats sleep inside.
  • Sometimes a new friend is so obviously a life-long old friend that it’s a puzzlement to answer the question, “so how long have you two been friends?” (thinking of you, Laura), and sometimes an old friend chimes back for new discoveries (yup, you, Ravi). Related to this, the friends who hold my stories are godsends when it comes to reminding me where I came from, what I got through, and what freedom I inhabit right now to follow what calls.
  • Health and maintaining it is just about more everything that I imagined. Likewise, certain things (I’m looking at you, chocolate mega dessert) that used to embody great mouth joy can quickly trigger a Rube Goldberg-like chain of pain.
  • It’s an old adage to be careful with or lower our expectations, but I expect we can keep expecting gratitude and surprise, which leads me to share this poem from my new collection-in-the-works:

No One Tells You What to Expect

A downpour as you’re running down Massachusetts Street

in sandals that keep falling off in unexpected puddles.

Ice on power lines. The dying who won’t die,

then a single bluebird dead in your driveway.

The deadline or lost check spilling the orderly papers.

The part that isn’t made anymore for the carburetor,

or the sudden end of chronic sinus infections while lost

in a parking lot looking for where you parked the car.

Your best thinking won’t be enough to save your daughter

from a bad romance or your friend from leaving the man

she’ll regret leaving. Across town, in a quiet gathering

of maples, someone drops to her knees in such sadness

that even the hummingbirds buzz through unnoticed.

The dog you thought gone returns wet and hungry,

the phone call reports the CT scan is negative,

and your husband brings you a tiny strawberry,

the first or the last, growing in your backyard.

Life will right itself on the water when the right rocks come along,

so put down your paddle and let the bend tilt you

toward what comes next: the bottoms that fall out,

the shoes that drop, the wrong email sent while

a cousin you lost touch with decades ago calls,

his voice as familiar as the smell of pot roast

while that song you forgot returns like an old cat.

Expect to be startled.

Lightening Up for the Solstice: Everyday Magic, Day 959

Tomorrow the world turns over: our shortening days stop in their tracks, and the light begins lengthening those days for months to come. Even the dreaded month of February, out there on the near horizon, will be far brighter light-wise as our long nights tuck into themselves.

At the same time, this is a year I’ve been lightening up, not so much weight-wise (although certainly warranted by all those height-weight charts). I’ve taken a year-long unpaid leave from Goddard College, a place I love immensely but after 64 consecutive semesters of teaching there or elsewhere, I was ready for a break. I’ve just completed over 25 gigs — readings, talks, and workshops — to promote Miriam’s Well, my new-ish novel in many states (KS, MO, OK, WI, VT, NE, MN) and states of being. In further evaluating the many ways I make a living — “What do you do, Caryn?” “Do you have an hour?” — I’ve edited out work that’s too weighty in proportion to how it fits my callings, health, sanity, and need to make some moolah. Although our family is still grieving and will be for some time, the death of my beloved  mother-in-law also brings a little more mercy and light. And through two years of healing (still in progress) with my integrative physician, Dr. Neela Sandal, puzzling through anxiety issues with a great therapist, and guidance from other supportive humans and forces of nature, I’ve leapt into considerably better health which, as we well know, informs all else in a life.

So I have a lot of reason and reality to sense so much more light, both that bright blur, like right now in the sky emerging, and the easier to lift and carry kind of lightness. The sky we live in and the sky that lives in us will keep bringing us many manner of weather, change, surprise, and mystery, and of course, there is great beauty and discovery for us to traverse in the rich darkness and weightiness of life too. But for now, as the darkness and heaviness lifts some, I’m swimming in gratitude which itself is another kind of lightness.

Went In For a CT Scan, Left With a Panic Attack: Everyday Magic, Day 943

“That’s caveman stuff, and there’s no way you can stop it,” my friend Kris told Ken and me over carrot-orange-ginger juice and corn meal pancakes at the Roost today. I was just past (but not past)  a CT scan, a routine check because of all the pancreatic cancer in my family. To my surprise, once lying down, happily chatting up the technician, I went from A-Ok to No-Way-In-Hell in a flash. All it took was the machine moving me toward the scanner, and panic took over the wheel.

This is not to say I didn’t try to then smooth down the ragged edges of the shaky terror that started first in my bowels, then shook up my torso at high speed, even constricting my throat a little. Ken came to my rescue, and we practiced breathing, I plugged myself in to soothing yoga music on an Ipod mini, and we talked up one side and down the other about how this was nothing to fear, it would be over in 10 minutes, and all I had to do was breathe and stay. The staying part wasn’t happening. Panic attacks are a whole lot like a a train revving up to 120 mph while the conductor quickly discovers the brakes are out, and has she ever really been in charge to begin with?

For any of us who have experienced such things, we know — in the most visceral way possible — that the body is a somatic animal, and there’s no herding that animal into logic at certain moments. While it would have been good to have gotten through today’s dealie deal in a hot minute, my future holds a return engagement, this time with greater preparation, mainly in the form of happy-place drugs.

Although this is crazily unpleasantness in the moment, it’s a good reminder of how, at heart and in body, we are wild beings, sometimes unable to behave according to what makes sense and what is expected. Sometimes that takes the form of howling at the moon, and other times, it means listening to a runaway train body. Yup, caveman stuff indeed.

We're All Such Delicate Creatures, But At Least We're In Good Company: Everyday Magic, Day 895

Everyone I know has something hard to live or live with: the everyday heartbreak of going on when a greatly beloved is dead or gone, a scattering of demeaning jobs or not-so-sweet sweethearts, tunnels of depression or roller coasters of anxiety, or chronic illness or cumbersome disabilities. Maybe we’re hard-wired to have an Achilles heel, some weak spot named for Achilles of ancient Greek mythology whose mother, Thetis, dipped him into the Styx river to make him immortal. To keep hold of him, she held him by one heel, which became his vulnerable part.

My Achilles heel is chronic illness, mostly of the sinus-infection-whatever-mystery-virus-is-this-fresh-hell variety. While I’ve struggled since childhood with getting sick more than the average bear, ever since I went through cancer and chemotherapy, this vulnerability has gotten more airtime. I won’t bore you with the long list of conventional, alternative, cutting-edge and/or traditional treatments I’ve sought, and I’m certainly not asking for advice — I have what feels like a good and long-term treatment plan in place now that may lessen the and-she’s-down-again days, and I’m honored to be working with a great integrative physician. But there are days, like this one, when I’m limping around on my Achilles heel.

One problem with vulnerabilities, especially the chronic ones, is that it’s hard to get beyond self-blame, or at least, it’s hard for me. When I get sick, my first impulse is to scan my days for what I did wrong and to feel like I’m failing at life. But this is just the my thinking and thoughts, not reality. What is reality? I’m hardly ever completely sure, which I believe is kind of the essence of intersecting with reality, but I do know that life is far more mysterious than we can fathom. We don’t know what will happen, and by extension, what this symptom or that one truly means all the time. We don’t even know all the details of our life lessons, except that sometimes those lessons are relentless intensives. While I believe very much in the power of healing, and siren song of health, I also know it’s beyond my control to have the ultimate power to fix what ails me, or the world.

Just like I practice the cello, I can keep practicing health like all of us can keep practicing ways to live with our vulnerabilities. Some days, I’ll make a sweet note, and some days, it’ll sound like shit. I can keep aiming toward ideal wholeness, but I have to remember that I’m already whole because being being a little bit broken in some way or another (aka Leonard Cohen’s “There’s a crack in everything/ That’s how the light gets in) is what it means to be a whole human.

One of my favorite songs, “That’s What Makes You Strong” by Jessie Winchester, tells us how what makes us weak, what makes us need someone, is what makes us strong. “That’s what moves our souls, and that’s what makes us sing,” the song goes, and I love this version by my friend Kelley Hunt. We are moving mosaics composed of all the pieces, edgy or smooth.

What helps us grow courage and compassion is the everyday Achilles heels of our lives, reminding us that, yes, we are designed by nature to be delicate creatures, and yes, we are also called to work, play and live with the materials life gives us. There never was a river of immortality, just us humans, sharing our stories of falling down and rising down, and in the sharing, remembering that we’re never alone.