A year ago, I was positively radioactive. On June 14, I had surgery to insert a tiny gold disk of radioactive pellets in my right eye, and on June 19, I had surgery to have it removed. That span of days, I was scared and exhausted by unremitting pain (that would go on beyond the radioactive phase), yet I was also on my front porch, drinking iced tea, watching hummingbirds dive-bomb each other, and occasionally eating a lemon cream croissant from the fabled 1900 Bakery that Kris brought me. I couldn’t pet the cat, get within 10 feet of Ken, or endure any sunlight.
A year later, I’m on the front porch of the Writers’ Colony at Dairy Hollow, my feet on a chair, my computer on my lap, and my eyes — one that can see relatively normally and that other that sees an impressionistic, soft-edged, floater-crossing world — are fixed on the sparrows, jetting from fence ledge to tree branch. We regard each other while a white-skinned sycamore tree looks on. I’m drinking iced tea and thinking about eating some leftover beef bourguignon for lunch. A whirly-gig — a little thin leaf swirling unevenly all the way down — catches me. Because of the pandemic, I’m alone here, and it’s okay.
A tale of two Junes is just a sliver of all the Junes I’ve lived and hope to live. A year from now, I envision a widely-distributed, extremely-effective, and vividly-safe vaccine, and life not going back to the the old normal, but opening back up. Maybe I’ll be back here, but when the trolley passes by, as it does every 30 minutes, the driver and riders won’t be masked. We’ll go to restaurants again, peruse book stores, consider air travel with ease, and think nothing of stopping at a gas station to use the restroom. I see us talking about how strange it was, still is actually, to have lost so much and so many while also — I hope — saying what we can see now that we couldn’t see pre-pandemic.
A year ago, I had to wear a towel over my head as well as two pairs of sunglasses under that towel when riding in cars to go for medical follow-up appointments. Light hurt so much that many evenings, after I lay on the couch with an ice pack over my eyes while we watched (me watching by listening) a Northern Exposure episode, we went to the porch in the dark to listen. My ears learned to see 6 varieties of cicadas and even more of katydids. I couldn’t see what I would see.
A year from now, I wonder what we will see and deeply hear in new ways, trusting that with all we lose, there’s some compensation of vision, beauty, wisdom or compassion even if it’s not often enough to erase the pain. There’s also this wind ruffling these leaves while a branch trembles under the weight of a young sparrow, just out of the nest and ready by instinct for what’s next.
What is a year? We don’t know, but we will find out.
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As I watch the Pendleton’s peonies I just bought rush from tight little balls to full-throttle fireworks of blossoms, I keep thinking of three impossible things: the massive tornado that tunneled through our area last May 28th, my eye cancer diagnosis right before the tornado, and the pandemic that ups the ante on anxiety and the longing to live . In short, it’s been a helluva year. In long form, there’s a lot to say about how all three events can grow into greater resilience, courage, community, and imagination in a hurry.
When I went to the Pendleton’s farm last Memorial Day, I was their last customer of the day. I bought some asparagus (which they’re deservedly famous for) and plants for the vegetable garden, but mostly peonies. Poet Mary Oliver describes this explosion of a flower as unabashedly mortal with “their lush trembling,/ their eagerness/ to be wild and perfect for a moment, before they are/ nothing, forever?” I was reeling from my diagnosis through a maze of scans and tests toward what would be very painful surgery to insert radiative pellets in my eye, then remove them, and I knew the bold and brave peony was what I needed on my night table.
I spoke with John and Karen Pendleton that afternoon about the times they had to rebuild (such as when a microburst wiped out their farm) and the long hours and slim margins of the farming life. We also covered the care and feeding of the peonies, heavy balls on the ends of long sticks Karen fetched from the refrigerator for me to take home, plop in a vase, and voila! Magic happens. But only because the Pendletons, like so many local farmers, stick it out and put in the time.
The next day, the afternoon air was so weighted in humidity and danger that it was hard to think straight or breathe freely. Then the sirens started in earnest and didn’t stop for over an hour. I ran up and down the stairs to the basement many times, urging Ken to come join me in a protective underground space while he insisted he could stay outside a little longer watching the huge wall of rain approach. The only problem was that this wall held a rain-wrapped tornado (or more accurately, a bevy of tornadoes snaking together and apart), making it impossible to see what funnels of destruction were heading our way. Our son on the phone, tracking Kansas radar from his Wisconsin apartment, assured us whatever was coming was coming straight for us.
The last time we experienced this was shortly after I completed chemo 17 years earlier to poison-cleanse all the breast cancer out of me. I remember, when Ken asked what I wanted to save, just shrugging and suggesting the animals, kids, and photo albums. That tornado lifted back up and didn’t touch us. This time I was angry, yelling at the sky, “Really?” along with a bunch of curse words.
The tornado just missed us, downing and twisting trees a tenth of a mile north. But it grew larger and stronger as it drove northeast, overtaking the Pendleton Farm. While they were safe in their basement, the home and farm they climbed upstairs to was devastated, and they were faced with the decision of whether and how to rebuild, not to mention a massive mess. People came out of the woodwork for them and for our other neighbors who lost roofs, windows, whole houses, and certainly a sense of safety in the world.
Since then, I’ve finished my cancer treatment, and although I’m mostly blind in what I call my magic eye, I’m okay….for now. But that’s how it always is with life and certainly how it is with the pandemic for many of us. But oh, so many losses for so many this year, the kind you can’t rebuild or just use your other eye to mitigate. There’s also the overwhelming economic and economic security losses (how high can you count?), the fear and dread of how to stay safe in this long interim between pandemic and remedy or vaccine, and so much we took for granted no longer part and parcel of routine life.
But there’s also these peonies, this year’s bouquet I bought from the Pendletons now that they’re rebuilt and rebuilding. There’s this world full of tight communities coming together to help and support their members. There’s this human tendency to start over, exhausted and heartbroken, and make something good or good enough out of brokenness.
“Do you love this world?” Mary Oliver asks in her poem, “Peonies.” Yes, I do, so much, especially now when the tender beauty and intoxicating scent of a flower is surprisingly strong enough to hold me, even with the possibilities of wild weather in this body and across this land and nation. I wonder what next year’s peonies will tell us.
A year ago today, pacing an empty parking lot, I cried so hard on the phone with my friend Kelley that it was hard to get the words out: “I have cancer. In my eye. I’m so scared.” Ken was racing back from Topeka to meet me after my two hours of scans at the ophthalmologist’s office. My right’s eye blurry eyesight wasn’t a minor glitch in this body’s solar system, but a large asteroid crashing through whatever semblance I had of calm, whatever thoughts I had of being safe.
Thus began my personal pandemic with its the customary WTF? phone calls, bouts of fear storms, and a lot of clearing of the calendar. The next day was far worse when my new ocular oncologist said it could be a melanoma but it was more likely a brain tumor. “Let’s hope for the melanoma then,” I said. She shook her head, “They’re both bad!” The interim between that moment — a few hours of more scans in between pacing the waiting room with Ken and my brother Ravi — and the oncologist confirming it was a treatable melanoma was terrifying. But when we got home that day, the sky took on a new sheen: a rainbow to the east, and it was enough.
I thought my life would be briefly interrupted and not changed all that much, but just like my breast cancer road trip 17 years earlier, it took many months and knocked over many plans, notions, and habits. I would have many more scans and tests, a radiation implant in my eye that would require two major surgeries, and a whole lot of time enveloped in hurt and anxiety. That summer, I hardly left the house except to visit a doctor or my therapist, donning two pairs of sunglasses and often a towel over my head because light hurt (obviously, I wasn’t driving). Eventually, I healed, and although my right eye is far past legally blind and I still can’t open it completely, I’m okay. The changes put in motion are still unfolding, and that’s okay too.
While the word “pandemic” refers to a global epidemic, for me and for any of us who go through such mortality-laced journeys, it sure felt like my whole world was in crisis. To ensure healing and safety, I was in home lock-down much of the time. The economy of Caryn World also tripped into the ground and stayed there for a while with lost income and, even with decent health insurance, thousands of dollars of medical bills. But lucky for me — and lucky for all of us right now — I could choose to surrender to what I needed to do based on the best science and medicine available.
Yes, a global pandemic is unprecedented in our lifetimes, but most if not all of us have lived through the world as we know it dissolving under our feet in a flash. Having the rug pulled out due to serious illness, death, heartbreak, and all manner of other very human challenges is part and parcel of being alive. We think we’re living one story, and poof! Suddenly, it’s a good thing to have erasable gel pens for your calendar, some savings, and the ability to make good things out of our friend, the potato.
This comes home to me lately on Tuesday nights when, through Turning Point, I facilitate writing workshops for people living with serious illness. I started doing these workshops 18 years ago, fresh out of cancer #1, although now we’re meeting through Zoom instead of in-person. A little like a warped futuristic vision of the Brady Bunch, 18-21 of us write and listen our way to greater meaning, strength, and mutual understanding. Some are finding new ways to bake chocolate tortes, some are summoning the strength to get out of bed while irrevocably heartbroken by the loss of a spouse, and some are dealing with chronic pain or what bad news might be just around the next blood test or MRI.
We’re well-accustomed to the land of the personal pandemic, and a good many were unfazed by stay-at-home orders, which we’ve had to enact before for a few months or as a way of life after losing some of our immune system’s robustness or our body’s mobility. We know what it is to eat resilience for breakfast, aiming ourselves toward outlooks and activities that tilt open the door to some calm, some comfort, some joy. “Yeah, I don’t go to the store anyway,” a woman with a neurological disease told us. “I’ve hardly left my house for years,” someone else chimed in. Over years of living with illness and/or being a caregiver for a patient, many have learned how to “use it up, wear it out, make it do, or do without,” to quote Boyd K. Packer. No wonder we find great intrigue in the antics of squirrels or birds, growing flowers, baking bread, or other everyday resilience practices, readily available as we cross over the threshold of one room to another.
But it’s not just what people do in a personal pandemic: it’s very much how they frame the narrative, including the low dips, of their experience. Someone I’ll call Lulu has minimal energy because of her aggressive cancer, so she’s determined to make the best use of her time and energy left, using it to talk lovingly with her family and make special surprise boxes for her husband and daughter to find after she’s gone. “Bill” goes to his porch to breathe through the pain, focusing his attention on cardinals fighting it up in aerial dances. Lou (who has given me permission to use her name) wrote a book about her Vietnam nursing experience, where she was exposed to the Agent Orange that planted Parkinson’s in her; now she regularly speaks to veteran groups and community gatherings in between gardening and grandmothering, even if she’s a little off-balance some days.
This day, a year after my last personal pandemic showed up, we’re in the middle of a global pandemic, seven weeks in lockdown, but I take note of how many doors are still open, like one leading outside, where I plant some lilies or the door to my car which I can drive well enough with one eye to meet friends for socially-distant walks. As time passes, I even cross the threshold of not seeing my eye adventure as a loss because I keep learning how in any pandemic — personal or global — we have the ability to grow magic eyes that let us see our small worlds or the world-at-large in new ways.
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Years ago when I was in the oncology center waiting room for an appointment following my bout of breast cancer, two women made me cry. One was in her 70s, and the other was her middle-aged daughter, both clinging to each other and having a hard time answering questions because of their sobbing while they checked in to hear test results. I was soon called back to see my oncologist, and so were they, but I saw them again on my way out, both of them laughing and crying at once, still clinging to each other. A nurse who escorted them out hugged them and said, “I’m so happy for you.” They arrived in terror and left in joy.
I know those feelings pretty well. Since those dreaded “you-have-cancer” words first entered my orbit in 2002, I’ve been on the scan bus, making more stops than I would have expected because I was also diagnosed with BRCA 1, one of the breast cancer mutations. Add to this that my father and uncle died young from pancreatic cancer, and MRIs entered the mix. Then there was the ocular melanoma last summer, and now, post-treatment for that, I’m a regular in our hospital’s radiology department.
Last Friday, I had my second seasonal (every three months for many years) scan to make sure what was in my eye didn’t travel. Because this type of cancer, when it has legs (and I pray it doesn’t), usually shows up in the liver and sometimes in the lungs, I had an abdominal and chest CT scan (used to be called a CAT scan, although there’s little purring, involved), and some blood work. I was scared beforehand but not as scared as the first one last fall, and far less scared than the parade of of scans last spring. In the week before the scan, I had a few seconds here and there of full-body terror that makes me feel like I’m both thoroughly embodied in terror and also on the outside looking in. But I’ve learned fear storms are just another kind of weather that moves through: keep breathing, drink some water, tell yourself it’s just a strong emotion that will ebb, and eventually, the sky clears.
Getting scans to see what’s happening under the hood is something many of us endure. I know so many people living with and recovering from many health challenges, all of which require showing up on time, sometimes drinking strange fluids or having dye injected into us, and then being ferried in and out of large, sometimes (in the case of MRIs) outrageously loudly-clanging machines. There’s also other tests of trepidation many of us go through that show whether we’re in the money or up shit’s creek. My scans and health history aren’t more challenging than what many others go through, and I have a lot of “there but for the grace go I” moments when I hear of friends who are facing degenerative diseases, chronic pain, and terminal diagnoses (although life is such a diagnosis). Then again, comparison of our learning edges and life challenges is a futile activity.
I’ve learned and am continually learning to stay calmer, working through my phobia of being restricted in the grips of a machine. Last summer, my wonderful oncologist Sherri Soule gave me a prescription for a lot of Lorazepam, a low dose anti-anxiety drug. I wondered why she prescribed so many, but now that I’ve had that refilled twice, I know sometimes we need a little pharmaceutical help. I also have a GABA spray I highly recommend for moments that activate our fight or flight response. Like many of us, I practice slow, deep breathing, listen to music (especially during scans, and I’m sure Enya was invented for MRIs), and bring along Ken and sometimes other support people.
For this last scan, I found extra support in the technician, a lovely woman named Melissa who remembered me from last time, talked over the singers I was listening to my iPhone during the scan (Brandi Carlile and Carrie Newcomer), and treated me with such energetic tenderness that she put me at ease. Then there was the wait for results, best spent not speculating — we distracted ourselves by getting brunch at Wheatfields, reveling in the glory of bread. I’m so grateful that my oncologist doesn’t play the phone game (a call if all is fine or a “you need to come in right away” if it’s not) and meets with me a few hours after the scans. As she came in smiling, telling me all was well, to my surprise I started crying, but that’s pretty common with scans.
Each scan is another tumble with seeing how mortal we are. Recently, my therapist and I realized that it wasn’t the scanning machines — CT scans, MRIs, and Pet scans — that freaked me out as much as what the scans might read. At the same time, the whole process makes me fall more in love with this life, enough to spend a long and healthy lifetime grappling with what I keep discovering here.
When life feels out of control, I start counting. I first noticed this habit/neurosis/coping mechanism when I was in labor for my oldest child. I was in too much pain to count the seconds of each contraction, but between them, I couldn’t stop counting. My mind was immersed in a world of ascending numbers, which made me realize I had been counting seconds in quiet moments throughout the pregnancy, maybe as my way to prepare for the Olympic event of birth.
It’s no wonder that many days, especially closest to the eye cancer diagnosis and surgical/radiological treatments and long recovery period, I’ve been counting. I counted (first days and eventually in hours) out how much time passed and would need to pass during those five long days between when the tiny gold bowl of radiation was implanted under my eyeball and when it would come out. Since there, it’s been how many days since the diagnosis, first surgery, and second surgery — a way to measure the immeasurable thunderbolt of initial fear, then the stretch of road unfurling around surprise bends and drops toward healing.
Today it’s 133 days since I heard those dreaded you-have-cancer words. It’s 87 days since the first surgery to initiate Operation Tumor Melt and 82 days since the second surgery to remove the bolster rockers (radiation implant). But just this morning, I found myself counting forward, not backwards: it’s only six days to the three month anniversary of beginning treatment, and by December 14, it will be six months past, by which time I see myself (so to speak) even more healed and healing, especially since the medical treatment takes a while to resolve and dissolve that tumor down to just a wispy scar of itself, inert and of no danger to me.
What I believe in is beyond the reach of numbers, but healing is like that. Eventually the physical reminders and tiny irritations, the prednisone eye drops and dilating eye drops (to blast scar tissue off the lens of my eye) will be as distant as any visceral memory of the pain of contractions. The lessons of all this will come into view over months and years in ways that name or don’t name themselves to me: what it means to be mortal, the power of love, the mystery of healing, and how vast and uncontrollable time is. What I mean by the latter is how much we all get to learn (unless we die quickly and unexpectedly) about how the future is not what it’s cracked up to be or what we get to map out in numbers or letters, although intention, prayer, and contemplation help.
As I move toward seeing myself as generally okay, out of pain and danger, and healthy, I notice I’m not counting as much. Instead, I’m sitting here watching the last few raindrop slough off the gutters and into the flower beds, so overgrown from three months of no weeding that it’s not worth even beginning to find the ground beneath it all. I’m listening to the soft and whirling waves of the crickets as well as to a jazzy version of “Jet Song” from West Side Story. I feeling the subtly moving air on my arms. I’m counting on such arrivals to where I actually am, breath by breath instead of number by number.