Scans For Life: Everyday Magic, Day 956

With my oncologist, Dr. Sharon Soule

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.

With Melissa, the wonderful CT scan technician

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.

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Counting on the Other Side of Cancer: Everyday Magic, Day 984

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.

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Loving and Leaving Goddard: Everyday Magic, Day 981

My first group of students in 1996

Arm-in-arm, Vicky, Eduardo, Ralph, and I walked down the snowy country road, belting out “Walking in a Winter Wonderland” and doing wheelies backwards and forward in the heavy-falling snow as we laughed. It was well past midnight, probably around 1997, and I was in love with my colleagues, students, and teaching at Goddard College, where students designed their own curriculum based on what they felt compelled to learn for their communities and souls. I was sure that I would teach here until I was well past retirement age.

A few days ago, I signed, scanned and sent in my final paperwork to be formally “separated” from the college, and although I had been planning this leap from what I loved for many months, I was surprised by the panorama of emotions that engulfed me in sadness, strangeness, and something beyond naming.

Ruth, Katt and behold! A cow!

Last January, insomnia took me up the mountain of making this decision until I realized it was time to come down on the side of leaving. The urge for going began over a year ago when an economic crisis at the college, coupled with my exhaustion from teaching for 64 consecutive semesters, led me to go on leave. Then the dreams, as some of my readers know, began: dreams of following retired faculty into the woods, dreams of walking away from the college in the middle of the night, dreams of saying goodbye to staff and faculty while wearing raccoon make-up. I would wake up, argue with my dreams that I loved Goddard too much to leave, then the next night, another dream kicked my butt.

A handsome group of graduates at graduation

The dreams didn’t come out of nowhere (as dreams rarely do): my body had been singing, signing, and whispering its leaving song for a while. I rarely went to a 10-day residency, bracketed by 12-hour travel days (and that was only if everything went according to plan) without coming home sick, then struggling for a month or two to reach equilibrium. I grappled with living mostly in Kansas but, close to four weeks each year and longer in my dreamscape, in Vermont also.

I also heard something else calling my name: growing Transformative Language Arts, the MA concentration I started and coordinated at the college since 2000. I believe in paying attention to signs and wonders that nudge us toward our real work, and although I had been able to balance teaching half-time plus doing administrative tasks at the college with facilitating writing workshops, my own writing, and coaching and consulting work, that balance was changing. I felt compelled to develop new ways to help people write and witness the guiding stories that showed them their real work, truths, and strengths.

With Gayle, the first Transformative Language Arts graduate

So I made the leap. The timing was good as the college needed to reduce faculty in alignment with student enrollment, an unfortunate problem facing multitudes of small colleges lately. As I told people and amplified my wishes and ideas for evolving work, I found some new inroads and a whole lot of support. I also tripped into new ways of seeing my work and life by virtue of — surprise! — being diagnosed with eye cancer in late April, then going through treatment, and now recovery. Nothing like a whole lot of illness and healing to land a person in a new place in life!

As I move forward, regaining blurry but increasingly larger windows of vision in my right eye and in my sense of what’s next for me, I look forward to what I’ll see and be called toward. At the same time, I wanted to pause here to honor all that I love about Goddard: sitting with a student at twilight in my office as we puzzle out her study plans until she bursts out laughing and crying at once in relief because she now knew what she wants to do in her life as well as semester. Or singing “Salaam” though the thin walls of our offices with my colleague, the Rebbe Lori, before we scooted out to swim in the freezing-cold waters of the quarry between meetings and dinner.

The faculty at dinner with some friends

I loved rehearsing with the faculty for our cabaret act, the Goddard College Dryland Sychronized Swimming Team, while fellow faculty member Katt kept calling out, “Now remember. We don’t want to over-rehearse” although we only had one 10-minute rehearsal.

I loved walking the wooded  road from the dorm village to the library alone or with students, joking about how the wind in the trees was transmitting magic. Or those solo walks across the now-gone (due to a storm) the forest’s Wabi Sabi bridge after a long day of faculty meetings.

Winter happens

I loved the Wednesday morning field trips each faculty member could take with their students, especially the one where Ruth, our program’s director, joined  my six students and me in the Goddard van for a wander day in which we simply aimed ourselves whatever direction we felt compelled to go. Of course, we ended up at a remote Buddhist center where we fell under the enchantment of the bells.

I loved the quiet moments in the residency cabarets when someone got up to sing, tell a story, dance, or play the piano publicly for the first time, took a breath with all of us, then began.

I loved the summer meteor showers even when, lying on a bedspread next to a dorm with a bunch of faculty, we could barely see the sky through the trees. I loved the winter nights when the snow sparkled in kaleidoscopic ways I’ve never seen anywhere else, and I adored the ways the firs and pines dropped snow from their branches in seemingly slow motion.

Just another faculty meeting

In the here and now of this Wednesday evening when my former colleagues are at the college for a residency, I watch my shadow self sitting in a dorm room, as I would be doing if I were still a faculty member, a stack of student papers to read and a day of meeting ideas still swirling in my head. I tell her it’s time to cross that Wabi Sabi bridge of love and memory to the here and now of where I live. The rich Kansas night air — packed with the music of katydids, cicadas, crickets, and humidity — stirs me home. I am grateful for all of where I’ve been and for wherever I’m landing.

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When Life Reboots You: Everyday Magic, Day 980

It occurred to me recently that I’m in the middle of a big life reboot. Thanks to the eye cancer, treatment, and recovery time, I’m in a different season of my life than summer would have led me to believe. But that’s what life reboots do: they strip us down to the essentials of staying alive, then re-orient us to see and even be in the world a whole new way.

I realize that all of us get rebooted in our lives, and usually more than once, catalyzed by a medical diagnosis, a big loss and plunge into grief, or an old dream dying or dead. But everything can and does change with seemingly happy things too: falling in love big-time, finding the job of our dreams, or moving to our seemingly forever home. What we thought was the life plan, the itinerary of our own invention, or the trajectory we were supposed to live turns out to be a dry husk of a once high-flying insect. Just like when we reboot our computers, we have to shut down the old ways, wait for a new start, and enter some kind of password or otherwise invoke magic words or deeds to begin again. Unlike the computer, when the screen comes online again, it doesn’t often have all the same icons staring at us.

For me, the reboot started April 28 when the ophthalmologist told me I definitely had a tumor in my eye. It continues and will likely still keep unfolding over the coming months as the radiation treatment plays out its tumor-dissolving magic. Late spring and summer have become something else indeed.

Instead of going swimming two or three times each week, driving to meet friends for lunch or wander through Kohls to see what cool shirts are on sale, and going here and for gigs and meetings, I’m home, watching what is usually high summer move through me like the wind through the trees, also rooted here. The gains are more abundant than the pain (just about all gone), fear, and anxiety. Each night, we make time to sit on the porch, and in the dark, listen. We can usually make out at least four different kinds of katydids interrupted by the the tender and mournful call of the barred owl. Daytime, like right now, I’m also on the porch, hearing swirls of wind topple through the osage orange trees while a bird I cannot see pierces the waves of cicada humming (or roars). The soundscape continues to open up.

My work in the world — and I don’t just mean how I make a living — opens up too. For the last year, I’ve been considering ways to make a living without leaving the house as often, and boy, is that coming true with a vengeance. Some of my coaching client are coming here now, and over watermelon on the porch, we talk through new essays, website copy, and what a poem truly wants to be. The urgency that has driven the rambling hippie school bus of my livelihood for years is no longer onboard, and that bus is parked somewhere in the back 40. Instead, I’m letting come to me more than ever what my best ways are and could be to grow Transformative Language Arts — the ways we can use writing, storytelling, theater and more to enhance our lives and world (yup, and the Patreon campaign is part of this).

But there’s another closer-to-the-skin layer of my work: to listen more, be stiller, and trust more deeply that what’s mine to do will make itself evident (while resisting what’s not mine).  Every chance we’re given to see our storyline — what we thought we were living, who we thought we were — fall away is a gift.

Oh, For the Relief of Pain!: Everyday Magic, Day 977

When the anesthesiologist and nurse started me on Fentanyl last Wednesday, I told them I loved them both, and I meant it. By the end of the five days of hosting the gold heart of radioactive seeds in my right, the pain around in my eye and temple was so intense I was up most of the night before surgery. But once I got to the surgery prep room, told the good people around me of my nausea and pain, all manner of relief ensued: the nurse gave me a small cotton ball with peppermint oil for my nausea, then inserted some additional meds into my IV. The anesthesiologist gave me a Tylenol, then okayed the heavier narcotic which proved to miraculously fast-acting. In the body space where big pain resided, peace and joy rose over the land of my life within minutes.

All of this has me thinking a lot about the lengths I could go to to outrun pain, which are considerable. I can’t imagine slapping a kitten or stealing a car, but my mind along with the rest of me would toddle up desert mountains without water for pain relief. When I consider the times in my life when physical pain has ruled the roost — those three natural childbirths, a horrendous bout with an upper G.I. bleed once, and a history of dancing with migraines since I was a teenager — I know that when I’m in the grip of something painfully gripping, I would easily beg at the altar of pharmaceuticals for anything to take that pain away, and if that’s not possible, put me to sleep until it’s over. I have no doubt that had I given birth in a conventional hospital rather than a marvelous free-standing birthing center, I would have happily called out, “yes, please!” if an epidural was offered, forgetting my commitment for as healthy a birth as possible for the baby.

Then I consider the kind of chronic pain so many people I know live with — constant back agony, heart-numbing depression, myriad sharp pain throughout the body without rhyme or reason, and so many other physical and mental states equivalent to the ROUS (Rodents of Unusual Size) in The Princess Bride. There’s also the pain of the social body born of prejudices and biases: constant attacks on the self for not being white or straight or thin or whatever else enough. Lately, there’s the immense and needless pain of what is being done to thousands of migrant children, locked in cages without food or bedding, alone or crowded without enough ventilation or tenderness to survive on without incurring damage. We may not be experiencing such pain directly, but that’s the thing about pain: knowing it in enough intimacy often helps us tilt open the door of our own heart so that we can better see and respond to the pain of others.

My 12 days of surgery and migraine tussles suck of course, but perspective tells me it’s just a drop in the fuck-it bucket of what so many others are going through right now, whether it’s a six-year-old Guatemalan boy trying to keep a toddler fed on a concrete floor in Texas, a neighbor down the street carrying the shattered pieces of her grieving heart to the empty bed tonight, or someone who cuts me off in traffic because he was up most of the night with shoulder pain.

“Oh, for the relief of pain!” is a human chorus, coming back around at every turn if we look widely and listen deeply enough. What those of us harboring pain would do to relieve it is just as vast and complicated, and although this is surely what I always warned my students against — vague generalizations — I’m vaguely generalizing that a lot of pain in this world is fed by what we do or try to do to relieve the root of suffering. The opiate crisis, a rash of suicides, our collective issues with over-consumption that severely and negatively impact our climate and even our own survival — they all create ripples of pain, often without resolving the original pain or with replacing it with something even more vexing.

But that’s the thing: not all pain can be relieved. Some of the Turning Point writers I work with live with acute and constant pain from years of harsh chemotherapy or progressive neurological diseases. Some of my friends, surviving without beloved partners or parents or siblings, carry that vivid emptiness with them daily. Some of the people who brush past me in the food co-op or bank are hurting in an alphabet of pain most people can’t imagine.

All we can do is say it: I’m hurting. All we can do is ask: please help, or please just sit here with me cursing this embodied moment of sharp edges. All we can tell ourselves is, “Yup, it’s bad now, but I have hope it will be better tomorrow,” even if we’re repeating this refrain tomorrow. And all we can say is “I love you” to the world, even if temporarily disguised as a smiling nurse and anesthesiologist on the small island on what hurts surrounded by the bigger beauty of life.

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