A Visit to Scan Land: Everyday Magic, Day 1033

Why, yes, I’m drinking some iodine solution pre-scan. It just tastes like heavy water.

“I’m here for my monogram,” a silver-haired woman told the receptionist. “Yes, your mammogram,” the receptionist answered without missing a beat. Obviously, she had heard such variations before, and this is the way of Scan Land, where many — if not all of us — go every so often to make sure there’s nothing anxious or life-threatening growing, or growing too much, on our insides.

Yesterday, I returned to Scan Land for my quarterly CT scan or MRI to ensure that no micrometastases from my ocular melanoma were taking up residence in my liver or lungs. “How many of these have we done so far?” Ken asked me yesterday as we sat in the waiting room, me sipping the iodine water necessary for my CAT scan. I counted on my fingers: at least nine quarterly scans, and that doesn’t count the dozens of eye ultrasounds (amazing how you can get used to a tiny device moving back and forth on your eyeball) and another kind of scan that entails staring deep into a machine to watch the fires of Mordor.

I’ve made many excursions to Scan Land since 2002 when I was first diagnosed with breast cancer. Because I’m a carrier of the BRCA 1 genetic mutation (which increases risk for breast, ovarian, and other cancers) and because my dad and uncle died of pancreatic cancer, I was going annually for a CAT scan or MRI for years. With the scans related to the more recent cancer, if I could earn frequent flyer miles for all the hours I’ve spent in Scan Land, I could circle the globe.

To be honest, the scans aren’t painful, and because I’ve struggled with tight-spaces anxiety, they sure aren’t boring. But thanks to work with my therapist, meditation, medication, and if it’s a closed MRI, serious drugs, I’ve been able to get through them. That said, I’ve also experienced some of my worst panic attacks lying on a platform going in and out of a machine. I’ll never forget the 45-minute-long PET scan in a traveling scan-mobile parked outside the hospital which I hyperventilated and cried through before slowing my breath enough to see myself wandering a desert for a long night, searching for some sense of peace while reminding myself that this big, bad machine wasn’t going to hurt me.

I’ve worked through a lot of my scan issues, and yesterday, I did my first scan without any medication, and although I started to feel that rushing fight-or-flight sensation in my stomach, I remembered to breathe and listen to the song (Christina Perri’s “A Thousand Years” — even if it’s from a vampire movie) I always play on my ear buds. So now I’m mostly left with the end point for all who visit Scan Land: the results.

No matter what the results are, they are always extraordinary: good (thank heavens!), bad (Oh my God!) or ambiguous (Oh no!). We inhabits of the waiting rooms — before the scan and before the doctor’s visit to tell us the results — aren’t a cheery bunch for the most part, most of us somewhere between scared, hopeful, numb, resigned, sad, distracted, and freaked out. Waiting for the results is often the worst part of wrangling with cancer and other life-smashing illnesses.

Some doctors use the I’ll-call-you-if-it’s-fine-but-you-have-to-come-in-if-it’s-not approach, which makes for a terrifying drive to the doctor’s office, knowing bad news, possibly life-shortening, is about to assault us. Luckily, my oncologist has a better way: I have my scan in the morning, then go to her office at 1 p.m. no matter the results, which gives the worst of my imaginative capacities little time to get too riled up. Still, I usually have a twinge.

Then again, scans have saved my life more than once. A mammogram caught my breast cancer early enough that I could survive it. A constellation of eye and other scans led me to treatment in June of 2019 that so far (and continuing for many years to come, I hope, I hope, I hope) saved me. Yesterday was another clear scan, and once again I’m overwhelmingly grateful for my short trek in and out of this big donut-hole-shaped machine.

I remember years ago at my oncologist’s office seeing two women — one middle-aged and one older, a mother and daughter — walk in the door clutching each other and sobbing. They were sure they were there for bad news, and it was hard for them to answer the receptionist’s questions as she checked them in. Eventually, they were called back to meet with the doctor as was I. When I was checking out, they were too, and this time they were crying for a different reason. They had gotten good news, and they were so overcome with relief and joy that they couldn’t stop weeping. I had gotten good results too that day, a good day in Scan Land for us all.

Life (and Tinnitus) in the Key of G: Everyday Magic, Day 1030

Finding the key on our purple (made in Lawrence) piano

Last night, I found that my tinnitus buzzes and hums in the key of G. How did I find this? By singing in key with the tinnitus while pressing piano keys.

Making music out of misfortune is sometimes the order of the day, especially when I’m encased in a cocoon of hearing the workings of my own brain. That’s somewhat what tinnitus is, according to this succinct and brilliant video with Marc Fagelson, who says, “Experiencing tinnitus is like eavesdropping on your brain talking to itself although it may not be a conversation you want to hear.”

Then again, those of us (something like one in seven) with tinnitus don’t have much of a choice. How I got here wasn’t exactly by choice either, but rather a Rube Goldberg (no relation, just resonance) contraption of events. Over the last six months I’ve been immersed in the sport of extreme dentistry because the radiation treatment for my ocular melanoma wreaked havoc on my teeth. With upwards of 20 cavities, including many under caps, I’ve had close to 20 visits to the dentist, oral surgeon and endodontist. Almost all included drilling in various pitches, and yes, it turns out dental drilling can cause or worsen tinnitus (no, earplugs won’t help because the drilling is happening inside the head)

I’ve been running my own science experiment in my brain, and after each dental visit, someone turns the volume up on what was once a barely detectable buzz-hum-sing-roaring, sometimes so much that it wakes me up at night. So what’s a gal to do? Take to the internet and research the hell out of this of course, but I’ve also been telling people, which brings me a lot of stories of how people all around me have been living with tinnitus and other hearing quirks and limitations. There’s no cure, but there’s ways to make friends with this condition, which for me mainly takes the form of not storying this up with terms like “cancer’s collateral damage,” but instead telling myself tinnitus isn’t really unpleasant, and it’s more akin to be wrapped in multiple blankets of white noise. Sometimes it’s even soothing.

I’ve also recommitted to my wiggly meditation practice, changing my 5-minutes-of-meditation-when-I-feel-like-it to 18 minutes a day no matter what. While sitting quietly is a sure way to hear the loudest ocean of tinnitus engulfing me, it also gives me time to just be with it without thrashing against the walls of no such thing as pure silence. I also play music a lot, which helps somewhat mask tinnitus, and last night I stumbled upon singing along with it, then taking to the piano where I found it lived in the key of G. I then read today about how making and being in sounds that correlate to the same pitch is a practice called energetic masking.

So here I am, living life in the key of G, the letter that begins my maiden name of Goldberg but also goodness, google, God, guess, goobsmacked, Gaia, granola, gratitude, Gandalf, giving, grief, giraffe, grass, gravy, and grace. It’s not such bad company — and hey, a lot of these G’s are the very stuff of life — even if it’s sometimes a loud party of its own strange music.

What is a Year?: Everyday Magic, Day 1009

The porch I’m on June 17, 2020

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.

The view from June 17, 2019

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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The Peonies Where a Tornado, Cancer Diagnosis, and Pandemic Meet: Everyday Magic, Day 1007

Peonies from the Pendletons the day before the tornado

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.

This year’s Pendleton peonies co-mingling with my irises

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.

Cancer Anniversary: From a Personal Pandemic to a Global One: Everyday Magic, Day 1005

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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