When the World Opens Its Heart to My Ears, Cicadas and All: Everyday Magic, Day 979

It has been a time out of time, or perhaps more accurately, a time landed right in time. Unable to use my eyes as much, I realize how most of my waking hours are encompassed in seeing. Like Dracula, I also have to forgo direct sunlight and generally aim my days toward deep shade. Add to this the pain (thankfully very much receding!) of this eye cancer odyssey, and I burrow deeper into the dark, so far from my regular natural habitat. But there’s nothing like pain and healing to guide an anxious mind out of its usual hamster cycles and into the real.

For a writer who loves reading, movies, watching James Corden Cross-walk theater videos, and visually scanning the world for so much of my orientation, this has also been a deal. But for all ills, there are remedies, and the best one I discovered is to go outside about 8:30 p.m. each night to the chartreuse padded chair Daniel once got at a thrift store for his first college dorm room, and sit still on the night porch as dusk travels to dark. It’s taken a while for me to stop resisting what this body has been telling me lately in no uncertain terms: shut up, and close your eyes already. But when I do, the rewards are immense.

In July, twilight comes calling with a cast of thousands. Sitting out there last night with Ken, my eyes closed for an hour, we counted at least six different kinds of cicadas, starting with the low soft click of the green winged cicada, then the back and forth mild buzzsaw of Tibicen bifidus. Eventually, we got to the steady sweet roar of the plains cicada, a sound I describe as he wheels of a wagon moving across the prairie although the wheels, spokes, and wagon are made of cicadas, and of course, the wagon is hauling cicadas. (If you want to hear these and others, check out this site).

Tree frogs leapt into the fray for short or long stretches, and of course, the crickets showed up as they always do when it comes to getting any party started. These thousands of insects and amphibians not only coordinated their wild rushes into circle hums or steady chirps of green joy with their fellow specie comrades, but they also blended their sounds — something beyond and encompassing the essence of music — altogether. The plains cicada stretched their journey song into multiple cycles, then stopped on a dime. The tree frogs jumped in the gap, then paused. Suddenly, everyone from all directions started again.

We listened, my dreams merging me with the sounds as I dosed in the chair. I wanted to lie down to sleep in the house, but Ken urged me to wait for the telltale call of night, heralded by the Katydid. “When will the Katydid start?” I asked, and just then, the Katydid whisper circled over us. “Listen carefully,” he said. “There are two Katydids,” which we quickly named Katy Did It and Katy Didn’t. (Hear Katydids here).

Back inside, I sat in the beautiful healing darkness, serenaded by the hum of the air-conditioner, the snore of the dog, the padded rush down the halls of the running of the cats. From outside, I can hear the barred owl calling. There’s also the drumming of my hands on the keyboard, writing this before I forget, mostly with my eyes closed while the world opens its heart to my ears.

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“God’s Got You, Baby”: Everyday Magic, Day 976

The lovely view from the porch where I’m spending most of my waking time.

That’s what Cynthia said as she led me back to the surgery prep room when I told her I was scared. “And don’t you worry because God made women stronger so we can get through anything.” Cynthia works for St. Luke’s hospital in Kansas City, and although I don’t know her official capacity, she wears a bright blue and white button that says “success coach.” Her words were cool water to me in the desert, pretty literally because I was parched from the no-water-before-surgery rule, and I was crazy scared.

Over the next few hours when I was prepped on Friday, she popped in the room every so often, teasing me about going to the restroom so often, an effective avoidant strategy for me and inconvenience for the medical personnel when I’m hooked up to IVs and monitors. But her words about how God’s got me helped me breathe just a bit more deeply.

Now I know all of us don’t resonate with the word “God,” and to some it’s more than off-putting, but I believe that something/someone/somehow has got us. Call it the higher self. Call it the life force. Call it the Great Spirit. Call it Jesus or Buddha or pure love or real life. For me, God works just fine, shorthand for “the force that through the flower drives the green fuse” (to quote Dylan Thomas) as well as for the unconditional, abiding love we’re capable of giving and receiving.

Since surgery, I’ve come to the oasis of Cynthia’s words to refresh myself even and especially when I’m in pain. When post-surgery head pain and nausea dissolve into hours of exhaustion and restlessness. When an excruciating migraine wakes me up at 3 p.m. and I need to wait until daybreak to take my meds for it because they have caffeine. When surprise nausea hits for a few minutes, and more often, I’m rushing to the bathroom for bouts of digestive hell. When the itchiness and drainage of this right eye drive me crazy. When the fatigue and confusion of my left eye, surely mourning the loss of her partner for these five days, disorients me. When, which means most of the time, my right eye burns. When there’s little I can do but color and listen to birdsong.

But then there is birdsong, color, and all the ways God’s got me. When my close friends and mother’s voice on the voices tell me I’m still me in this good life. When Judy and Ken carefully rescue a green caterpillar caught against the screen porch screen so it can go on to transform into whatever butterfly it is next. When I listen to Brandi Carlile’s “The Joke” or anything by Mary Chapin Carpenter on itunes. When Kelley shows up with soup that’s just what I need. When Ken and I laugh together at a scene in Northern Exposure for the hour each day I can watch something (I get too eye-tired after that). When I blessedly fall asleep on the porch to the tune of hummingbird buzz and the unseen birds on the left chatting up the unseen birds on the right. Whenever I look at the gorgeous bouquet of flowers my sister-in-law Karen and my nieces sent. There’s also texts full of heart emojis, our daughter’s voice on the phone, our son coming here each evening to patiently take our dog, a little freaked out that he can’t be near me, to my in-law’s home for the night, and mostly, there’s Ken, sick with some crazy virus himself but making me tea, sitting outside with me to take in the walls of green life, and talking with me when I otherwise would be talking myself up and down walls.

I can only hope others going through challenges, particularly those of you who are chronically ill in ways that keep unfolding in unpredictable or same-old-same-old ways, have such support holding you. At the least and the most, I wish that someone’s got you too (as in “gets” who you are and holds you), which makes me think of the ending of this Rainer Maria-Rilke poem (translated by Stephen Mitchell), “Autumn”:

We’re all falling. This hand here is falling.

And look at the other one. It’s in them all.

 

And yet there is Someone, whose hands

infinitely calm, holding up all this falling.

Wednesday, there’s both relief and another big passage ahead: the same surgery, but this time to remove the gold heart (as I’m thinking of it) full of radioactive seeds. I don’t know if I’ll see Cynthia, but I’ll wrap her words around me like a woven shawl of blues, greens, prayers, and wishes. As with everything, I don’t know what the aftermath of that surgery will be like, but I’m grateful to know God’s got me.

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Preparing to Be Unprepared and Other Quirks of Cancer: Everyday Magic, Day 975

Over udon soup and sushi at my favorite Japanese restaurant, Nomi said health challenges taught her this: “Prepare to be unprepared.” This pithy phrase speaks to just about everything I know about cancer treatment, which often feels like a too-fast or too-slow medical excursion in an unknown desert with a big bottle of water and no map.

As I get ready for surgery at high noon on Friday to implant a teeny-tiny gold bowl bearing radiation under my right eye, I realize how little I know what I’m preparing for.  I understand that the implant will be removed June 19th, then the tumor will dissolve over the coming months, but there’s so much I don’t know. I haven’t met anyone who has had this procedure or rare cancer (1 in 100,000), which gives me a dazed and daunting sense of reality. Will it feel wildly-uncomfortable or painful? Will I still be me while harboring a radioactive time machine for five days? Having a good imagination and a talent for anxiety easily sends me to the races, up the wall, and across the living room with questions.

At the same time, I know such questions are based on a false premise: that there are relevant answers to be had for the cost of obsession and insomnia. Having had a very popular cancer, breast cancer, 17 years ago, I should know better. Back then, I assured myself that I would simply do what my mother and aunt did: a lumpectomy with a side of radiation, then I would be home-free. Other people’s breast cancer stories gave me more varieties of what to expect. All of this worked like fake scaffolding: it seemed to lift me up to high windows to peer into the future, giving my trembling feet a false sense of solid ground. But what happened, like what happens for most of us (even when the treatment turns out to be what we expected), was totally different.

There’s nothing like embodied experience to show us the power of the real. My breast cancer was more advanced than I thought. Chemo, which I previously believed was something I would never ever do, turned out to be relatively okay, punctuated by bouts of annoying ailments and culminating into a lot of exhaustion at the end of six months of treatment. Surgeries were moment-by-moment adventures of surrender and recovery, fear and triumph, thirst and replenishment, sometimes with nausea, a bit of pain, or a rash (guess who turned out to be allergic to morphine?), but overall better than I expected. Over and over, I was dazzled by the body’s ability to heal, but even more so, by the many ways our friends and community fed and held our family (including the kids, all  young at the time) in the 14 months between the initial diagnosis and final surgery.

My previous experience doesn’t mean much when it comes to any predictability, except for this: I know even more than ever how much the way ahead is made of mystery and love, prayer and the magic of deep healing. I happily take in all the prayers coming my way, whether from Christians invoking Jesus, Jews singing the Mi Sheberach, or Buddhists chanting. I’m learning to avoid what will inflame worry (especially 2 a.m. research missions on the internet) and keep me from being present enough to be with all that comes.

I sit outside as much as possible and listen to music, including the continual birdsong and wind-in-trees rhythms of the here and now in this beautiful time. I write my intentions for this surgery. I’m vow to continue giving myself willingly and completely to the best abilities of my doctors and medical team. I stand on the back desk late at night with Ken’s hands on my shoulders as we thank the ancestors and land for all the guidance we find here. I laugh so hard while cleaning out my refrigerator with Anne because now it’s so beautiful. I do long-distance guided imagery with my energy healer. I pet the dog and look into his eyes. I visit my therapist a lot. I talk with my kids and best beloveds, ending most conversations with “I love you.”

And I let myself feel the fear when it swims or storms through, reminding myself of what my integrative physician, Neela Sandal, said to me yesterday, “Breathing is prayer.” Maybe that’s the best way I can prepare to be unprepared.

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Naming the Turtles on a Healing Journey: Everyday Magic, Day 974

Meet Orlando Bloom!

Throughout my healing journey — the cancer diagnosis and visits with three oncologists,  the big-time scans and fears, the  joys and reliefs, the waiting and preparation — I’ve been naming turtles. While this might be true metaphorically, it’s also truly happening beyond the world of symbol,  sorrow, and surprise. I have a friend, Ben Reed, a professor at Washburn University, who has been tracking and studying ornate box turtles in southeast Kansas, and he’s given me the honor of naming each turtle. Because Ben is a turtle whisperer, he’s kept me busy.

It started when Ben dropped by one day with a beautiful large female he found, then numbered to track for his research. I told him she was surely worthy of a name made of letters, not just numbers, and he agreed. That was last summer, and this spring, he found Lucille again because of the transmitter he attached to her last year. He also re-found Samantha, Theodore, and the three-toed box turtle Rudolph. Lately, because of rain in biblical proportions, he’s found a bumper crop of new turtles for me to name.

I named Demeter, Persephone, and Priscilla — a trio of goddesses — the day after my brand new ocular oncologist said there was a good-sized melanoma in my right eye. I was sad and exhausted that morning, and it helped to distract myself by thinking of turtle names for three strong, old wise women turtles, or maybe it wasn’t a distraction at all, but a way to take in the larger  breathing and changing world.

Ben and Ursula

In between phone calls with my regular oncologist’s office to set up scans and tests, I was further connected to this bigger world by naming Yoda although all turtles look like Yoda. Then again, many of these turtles also look like Gandalf (the Green), which I  bestowed on a very old male, surely is the incarnation of the previous Gandalf. I mean, if he can keep go from Gandalf the Gray to Gandalf the White in one lifetime, surely, he can come back as a turtle in another.

Just home one afternoon after a much-needed session with my therapist, I had more turtles to name: Leah, from the Old Testament, who Jacob had to marry to get to his much-desired Rachel. I always thought Leah had a bad rap, so why not let her be a vibrant turtle of intricate patterns?  There were also two teenage turtles, both female, so I went with Amber and Topaz, assistants to the Wicked Witch of the West in The Wizard of Oz. I played one of them in the only play I was ever cast in (and not for a lack of auditioning through my childhood and teenage years), a small production held at a camp I attended when I was 11 years old.

The night before my PET scan, when I was pacing the deck talking with friends to calm myself from anxiety and a healthy dose of claustrophobia, I was interrupted by the need to name turtles: one very old, so I went with Saul, an old Jewish man from Brooklyn, Sparkle for a lively young female, and Ponderosa for a sunny young male.  The next morning,  buoyed by energy healing from my friend Ursula in Germany and a good dose of pharmaceuticals, plus a lot of slow breathing to relax myself. I also was lifted by the thought of naming more turtles, which was helpful since later that day, Ben texted me with a magical female I named Ursula.

Yoda, but then all turtles look like Yoda

After the MRI a week later, another big challenge for me involving a small tube, big prayers, Versed and fentanyl, I was so relieved to have gotten through that I was utterly delighted to name Orion after the constellation of the same name.

Later, before driving to the ocular oncologist with a fear storm in my digestive system because of how suddenly my eyesight diminished, I named Thor and Odin. Such mythological names helped me envision greater courage. Coming home that day, Ken and I were greatly relieved to discover that the tumor wasn’t growing, and my eyesight was being impinged instead by fluid build-up in my eye (made worse by, guess what?, stress!). As my eyes slowly undilated from Anime-sized pupils to more normal ones, I got to name a large and beautiful female Leslie Jones (from SNL fame) because badassery is also the name of the game now.

There’s also a pregnant Chrysanthemum and Clematis from a day the turtles from a day I was in a botanical mood,, and Sunshine  who I named when a storm was bearing down, both around and within me. And let us know forget Goldy and Silverado, two western-style guys (at least how they looked to me) with yellow and golden touches.

Demeter, Persephone, and Priscilla: Three Goddess Gals

All these turtles, even the ones who struggle, seem to have a beautiful grip on the life force. When Ben found a female turtle upside down in a just-burned field, so light because of near-starvation because of an invasion of bot flies, we both agreed she needed an especially strong name, so I suggested Herculia. He brought her to his lab, where she became a mascot for the Washburn biology department, everyone cheering her on after Ben removed multiple bot flies, parasitic jerks who has destroyed her back legs and possibly her digestive tract. He didn’t expect her to survive, but six weeks later, she’s still alive, and just yesterday, she finally ate something of substance, a worm, so maybe she’ll make it after all. While Ben will need to make some kind of wheel prostheses for her back legs, she may one day propel on her own.

It doesn’t take a rocket scientist or a turtle biologist to see the parallels between us messy humans and these ancient and resilience beings, although I’m sure the turtles outrun us in patience and even grace. Come fall, they go underground to hibernate through the winter, then emerge into the mud, rain, and wind of messy and changeable spring, finding their footing through storms and droughts, trials and tenderness. However the weather and light shift, they persevere.

Turtles pre-date humans, and from what little I know, their ancestor proto-turtles may be as much as 220 million years old.  Ben explains that many species “are virtually unchanged morphologically since the dinos, which is pretty incredible.”

Yes, incredible indeed, and so is simply holding a turtle, marveling at their ability to live below and among us,  navigating water and land, earth and fire with a hard shell that tells their stories of age and art and inside that shell, a beating heart committed to life. Surely we are all, turtles all the way down, on our own healing journeys, so let us pause and name what gives us strength and sight.

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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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