Make Mine an MRI With a Side of Enya and a Rainbow for Dessert: Everyday Magic, Day 1060

Question: How many MRIs does it take a claustrophobe to relax?

Answer: When Brandon, the wonderful (re: tolerant) MRI tech asked I told him I’ve lost count. Nothing like tunnelling, sleeping, and freaking out at times through two bouts of cancer, plus having some greater risk of other cancers, to make that too many MRIs, Catscans, X-rays, blood tests, and other cancer wellness (as in, “if we find nothing, all is well”) to count.

Today was my annual MRI to make sure there’s no tiny pancreatic cancer cells hovering around the corner. While I’ve never had this cancer, it’s what killed my father and uncle, and it can also be tied to being BRCA1 positive (which I am, meaning I have a breast cancer genetic mutation). This MRI cross-bred with my quarterly scans to ensure I have nothing from the eye cancer I had traveling to other parts of the body.

As someone who used to be terrified of lots of scans, especially MRIs and anything where I’ve sent into a tube (I once visited the underworld during a Petscan), these are a deal for me, or at least they used to be. I’ve needed heavy sedation on a cocktail of you-are-somewhere-far-far-away drugs numerous times. Even then, according to my good friend Judy who once sang me Jewish prayers and Buddhist chants during one, I still kicked my legs wildly the whole time.

But when faced with the reality of many more scans in what I hope is a long and healthy life, I’ve been working on giving up my panic and dread. For the last few years, I’ve talked with my therapist about exposure therapy and how my life is giving me this in bundles when it comes to scans. What also helps is Enya.

I had almost forgotten how much I loved Enya’s music in bygone eras, but a few years ago, I was given the choice of listening to her or the Beatles during an MRI, and I chose Enya. It turns out that Enya provides the perfect antidote to the patterns of sonic booms and yelps sounding through me, which altogether feel like having my body energetically probed by some benevolent extraterrestrials.

Enya’s soaring harmonies and bell-clear voice winding around me during an MRI cradles me in an angelic choir, even as the machine loudly bellows and chimes its surveying of my torso. I listen to Enya as well as the machine’s pre-recorded female voice telling me to hold my breath for various intervals of 11-20 seconds, then breathe normally.

This MRI and my one last October were actually, unbelievably, pleasant. With my head on a pillow, my arms above my head resting on that pillow, and the slate I was on going in and out of the Easy Bake oven of the machine, I felt calm, at times almost happy, and so greatly relieved that I could do this without snapping into too-far-down-the-tracks-to-stop fight or flight mode. I also fantasized about exactly what I would order for breakfast at Wheatfields, where we go after each MRI, and how good that French toast and bacon would taste. And it helped having Ken there, breathing with me.

Back home after many hours in and around the hospital waiting for the good news that yes, all was clear and this was another Well Caryn visit after all, I watched the early evening sky brighten in the west while in the east, the dark clouds acted if they were holding a rainbow somewhere. I ran into the house and got Ken, a champion rainbow-whisperer, then we walked through the field south of our house rainbow-hunting until we found it, brightening over the 10 minutes we searched and even doubling.

It was only half a visible rainbow, but I’ll take that, and all the Enya music that comes my way with gratitude. I’ll even take the MRI, an adventure I would never have signed up for in advance but one that helps me relax in small spaces filled with sound, motion, and the wonders of medical technology that can save our lives.

Rematerializing After Being Beamed Up: Everyday Magic, Day 1036

Hello Minnie Mouse eye!

In the Star Trek shows and films, someone can yell out, with grave urgency or casual cheer, “Scotty, beam me up” then off they go. But when they land back in the ship after escaping the clutches of attacking lizard-headed creatures or the like, they often have a moment of looking just a little shaken up (except for Spock of course, who is almost always composed).

Every surgery I’ve been through for is akin to being rematerialized in a new place, perhaps in a way that humans might be if they could be transported through particle accelerators without dissolving or exploding in the process. Then again, surgery is like this: you go into a space transporter device made of anesthesia, then you wake up somewhere else changed in big or little ways. I’ve rematerialized over the years in various expeditions without breasts or with a radioactive disk inserted in my eye. Even after the small surgeries, like having scar tissue and a cataract removed last fall, I came to consciousness changed. I think this is true of eye surgeries especially because while eyes are small, what they see if humongous.

A week ago, I did a short stint in the transporter to have my eyelid sewn in a way that would allow me to finally open and keep open my right eye (the muscles were damaged in treatment for an ocular melanoma). It was a short ride in the transporter because, even through I was thankfully very numb during the procedure, the doctor needed me awake enough to open and close my eye repeatedly and keep looking down at my feet, a trick when lying down, but I’ve had a lot of practice with this over the last two years.

Then I was rolled back to the recovery room, sat up, and, with Ken’s help, put on my jacket and scarf. Then we were home, and as all the marvelous magic of the numbing meds wore away, I hurt but mitigated it with some over-the-counter meds. Then it was the next day, and as the week unfolded, I realized having a much more open eye meant I could see a lot more. But it also meant that I was shaken up in new ways, as if some of me was still in one place and the rest was here. During this full landing in one place, I was dizzy, nauseas, disoriented, eye-strained, and wiped out, which turned out not to be a good match for many Zoom coaching sessions while also working in Google Docs (thanks to my coachees who helpfully rescheduled with me for next week).

As I start to come out of this, rematerializing as a two-eyed seeing creature, there’s a lot to grapple with, namely that my right eye — surprise! because I couldn’t see this for so long — seems to be Minnie-Mouse-dilated, likely permanently (but I will find out more about that soon). This explains why this magic and challenged eye sees a much brighter and at times light-blasted world than my left eye. Of course, I’m also legally blind in this eye, which is a strange way of saying I can see with it but in the language of impressionist paintings.

But there’s mainly joy here in Mudville, especially as the nausea relents (thank you, candied ginger and time), of seeing a vaster scope, and when I look in the mirror, seeing both eyes open and learning their new recalibration dance of tracking together. One thing that continually dazzles me is how the eyes can innovate and reset themselves to find new ways to team up, very much like the heart as we go through another $%&#@# learning adventure.

As we find our way to the other side of the transport, all has the potential to wake us up to nuances and vistas of this world. I’m reminded of what Antoine de Saint-Exupéry writes in The Little Prince: “And now here is my secret, a very simple secret: It is only with the heart that one can see rightly; what is essential is invisible to the eye.” True that, but also, what becomes more visible to the eye can show the heart how to see.

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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