A Bajillion Sonic Suns (Cancerversary #7)

What the heck? It's my seven-year cancerversary, and today I am at a writers conference listening to a guest speaker talk about publishing, with a posse of excited middle schoolers by my side. Deja vu. Seven years ago, I had turned up at another writers conference to give a workshop to middle and high schoolers, and I was toting a 1-day-old lung cancer diagnosis that took up a lot of space in my psyche. On that beautiful fall day, I sat with a dear friend under a circle of trees on a bench in a university quad and told him I was probably going to die before too long. The disease was stage 4, incurable, with a terrible prognosis, according to my "extensive" research online. He thought maybe a higher power had other plans for me. I was skeptical. Who was I to deserve any special consideration from the universe?

But he was right. I didn't die soon after that conference. Instead, I got treatment, well, multiple treatments of targeted oral therapy, infusion chemo, radiation, and more targeted therapy, which I still take every day. I was fortunate enough to join a clinical trial. And at seven years into this crazy cancer dance, I have crammed in a lot of living I never thought I'd get to do when I was handed a diagnosis that sounded a whole lot like a death sentence. Instead, I got a miracle. To honor that miracle, which has the hand of the divine in it, along with the hard work of researchers, my medical team, and the loving kindness shown to me by dear ones, family, friends, and even complete strangers, I am inviting you to support research into ROS1 cancer by donating to my personal fundraiser through Network for Good here: Leslie's ROS1 Research Fundraiser

And for your viewing pleasure below, to celebrate this miraculous stretch of life, last week I took one of my old radiation masks I'd been saving since 2019 when the cancer had metastasized to my brain, and I cut it up, painted it, and made a weird mobile out of. Plastic, wire, paint. I wrote a poem on it:

Your dreaming body

dreams of dancing

atomic be-bop

cells and organelles

muck and mud

germ and bud

a bajillion sonic suns

believe believe believe

breathe

And that's what I hope to do for a good long while...just breathe. Oh, and make weird art. And maybe, just maybe, make a wee difference by helping move the needle on cancer research.

Gratitude Post

 

And so, another year around the sun. Here I am again with the few remaining blossoms on the “memorial” cherry tree we planted 7 birthdays ago, when I didn’t think I’d be alive the following year to see it bloom again. Divine Creator had other plans it seems, so I am trying to live into whatever those plans might be with gratitude and joy. Thus, for the next several days, I’ll be celebrating in style as a volunteer with the Big Ears music festival in Knoxville. We’ve got all sorts of artists and performances in the line-up, big venues and small, from poetry to punk-cumbia, and everything in between. Plus there are those wonderful visits I’ll get to have with precious friends of many years. It’s my third go around with the Ears, and I’m more than thrilled to be working the festival. Heck, given my prognosis when we planted that cherry tree, I’m thrilled right now to be anywhere at all! 

So, if you see me grooving to some far-out Big Ears weirdness, say hey and ask me about miracles. I have some experience with them and would be happy to share.

Thanks to all my dear ones who sent good wishes and prayers that have gotten me to today. You keep me groovin’!

More Dreaming, Less Lessing

This past week I had the pleasure of reading lots of friends' New Year's resolutions on the socials. I also followed a trend where, instead of making a resolution or two, a person chooses a word or phrase that sets an intention for the coming year. I LOVED reading these words and the explanations for the choices, reveling in the connection with my fellow humans through our shared belief in the potency of words to shape our reality. It made sense that the words people chose were deliberate and positive: hope, kindness, determination, gratitude, etc. I say "YES" to all of them (risking accusations of toxic positivity). But I have had a hard time choosing a by-word of my own. 

At first I thought I'd go with the word "less," setting an intention to be less busy (2023 was pretty hectic), to acquire less stuff, to leave a smaller environmental footprint in every way possible. It's an important mindset for me to maintain, this one of taking up less space in the world, but when I really push on this idea of "less" my mind gets stuck in an infinity loop of diminishing returns. Yes, a "lesser" approach counters the overly-busy overachiever impulses and makes me hold more still, be more intentional in action and consumption, but I also keep hearing a big "NO" behind the idea of "less." As in "mustn't" and "cannot."

So after more consideration, I befriended the word "DREAM" and all the expansiveness, inventiveness, playfulness, and imagination that word summons. Dreaming (in sleep or in waking revery) is spacious, full of energy and air. It is an endless creative resource; it is where doing and making begin. But dreaming is also a thing unto itself—one may dream and not act at every instance. 

We shine full of story anyway, when we dream. It's enough to start a new year, a new day, a new breath.

P.S. I have the luxury of dreaming and even making some plans because I have once again received the grace of good scans and no active cancer. I am grateful every day, with every breath, for this miracle, this mercy to be alive and breathing, dreaming, and planning. And doing. 

That Makes Six

 

Number My Days, Oh Lord

Teach us to number our days aright, that we may gain wisdom of heart. (Psalm 90:12)

The artist On Kawara (1933-2014) had a thing for time, or rather for the ways we humans experience, think about, and record time. He counted his time on earth in days (29,771) rather than years, and created many works that addressed his concerns about time (and, I’m guessing, mortality). A part of one of those projects, the Today series, is shown here, as I found it on the wall at Dia:Beacon, a remarkable art space in the Hudson Valley that I visited for the first time this past week. The visit also marked the first time I ever heard of Kawara. 

Kawara began the Today series on January 4, 1966 and continued working on it, his magnum opus, until the day he died. According to the curator’s notes “Kawara required that each painting be completed on the date depicted on its surface and in the language and grammar of the country in which it was completed.” He painted one of these pieces every day of his remaining life, mixing the paint anew each day, hand painting the date (not using stencil) each time. If he worked on a painting and didn’t complete it by the end of the day, he destroyed it. The completed ones were each stored in their own cardboard box, often with a newspaper clipping published that same day in whatever country he happened to be working.

Say what you will about “modern” or “conceptual” art, I found this undertaking, the rigorous execution of one smallish painting each day, this taking of one’s own attendance, astounding. Obsessive, yes, but also tender in its near banality. To see a number of these canvases mounted around an entire room at Dia gave me pause. Why would someone do this when there are so many other things one could paint? Flowers and mountains and pretty birds. Portraits of beloved people. And yet, the making and sharing of these stark black and white testaments to individual days, not special ones, but any old day, seemed to me an act of courage, a staring into the abyss that is our mortality and, well, counting on it.

Though I say Kawara made paintings for “any old day”, I chose this one to share because the date represented was memorable for me and also, coincidentally, involved counting. On New Year’s Eve 1992, I had the good fortune to find myself climbing a hill in Kyoto, Japan with thousands of other people in a great crush to reach Choin-In Temple for Joya No Kane, the ringing out of the giant temple bell 108 times, once for each human desire (according to Buddhism). We circled the shrine in a throng as a team of monks drew back on ropes wrapped around a great log, and then let it sail into the bell, ringing it as they bowed, chanted, and caught the ropes to ring again and again, ringing out the 108th time to mark the turning of the year. Just like that it was January 1, 1993. And there I was, a few months shy of turning thirty, surrounded by men and women in kimonoed finery under a canopy of fireworks, sake-tipsy and giddy with it all. It felt quite spiritual, plus it was A LOT of fun, and a little terrifying given the number of people involved!

Even more remarkable than that particular New Year’s celebration, I've been lucky enough to observe another turning of the year, 59 in all, heading for 60. Here’s wishing everyone a joyful 2023.

I Saw the Figure Five

I Saw the Figure 5 in Gold by Charles Demuth

When we think of things that come in fives, a quick list off the top of the head might look a little like this: five senses, five tastes, five arms on a starfish, 5=the atomic number of boron, five fingers/toes per hand/foot, five faces of Shiva, five wounds of Christ, five joys of Mary, five Pillars of Islam, five books of the Torah, five elements, Chanel No.5, five golden rings. We know the number 5 is freighted with symbolism across cultures, and it figures somehow in nearly every discipline from alchemy to zoology. 

It also figures in cancer statistics. Five years is one of the magic numbers by which we measure the prospective fatality or survivability of a particular cancer. Some cancer treatments have better outcomes than others, and some cancers are so slow growing, no treatment is ever needed, which makes the cancer "survivable" beyond the five or ten-year benchmarks of living we use to measure such things.

When I was diagnosed with lung cancer, the five-year survival rate for someone with metastatic disease (like me) was about 5%. Meaning that out of 100 people with metastatic lung cancer, after five years, only five of us would be left standing. That was five years ago, and the reality of that statistic was made manifest in several of my online lung cancer communities where new fatalities were announced almost every other day. Today, the five-year survival rate is 8%, so we've moved the needle perhaps with a little bit with research and better treatment (I'll save my pitch for why you should support lung cancer research for my next post!). 

I think the odds of surviving this killer disease make me a bit of an outlier. Better yet, I'm gonna call my situation miraculous AF, because I believe in that stuff, and believe that science qualifies as miraculous. So here I am honoring the five years that have passed since the day I heard "You have advanced adenocarcinoma, a lung cancer." In that time I have lost three sweet friends to breast and ovarian cancer, and many many newfound friends who share my diagnosis to lung cancer. My mother also has been dealing with an early stage lung cancer diagnosis and some complications from surgery to treat that, and my youngest sister, Michele, was diagnosed recently with an early stage breast cancer for which she had surgery and will do follow-up radiation in the coming weeks. Cancer everywhere it seems, some days.

(An interesting side note here about my sister's situation...after mom was diagnosed with lung cancer, Michele tried to arrange a low-dose lung cancer CT screening for herself, given that two family members had lung cancer. The only other risk factor she had was long-term exposure to second-hand cigarette smoke, and her insurance denied the low-dose CT. However, in following protocol after a mammogram/biopsy diagnosis of breast cancer, she was granted a REGULAR CT scan, which did pick up some teensy tiny nodules in her lungs, not big enough to biopsy, but alarming enough for her medical team to declare she needed regular scan surveillance for both breast AND lung cancer. As we both say, everyone wants to save the ta-tas, so we screen and screen and screen every year, but the lungs...not so much. Sure...if you have breasts you can get breast cancer and if you have lungs...? Crickets.)

But despite the many difficulties of life in Cancerland (and Cancerland during a pandemic!), I've also traveled around the U.S. and overseas. I've gone to concerts, plays, and movies. I've hiked and camped and kayaked and biked, and I walked through some of the most beautiful parts of France and Spain. I've written LOTS of words, learned LOTS about lung cancer, and have met some of the most interesting, kindest, smartest people from around the world by doing all the things I got to do. So yeah, there have been some challenges, but many many many gifts.

Currently, my disease is not active. I've had other health problems this year, from COVID to some serious internal medicine-type-not-cancer issues, and so far, we don't see any sign that the cancer is stirring. Of course with each (all too frequent) report of a treatment failing or a fellow lung cancer patient struggling or dying, the day darkens with dread. We don't talk so much about cure for those of us with metastatic disease, but of managing the disease, keeping it in check so that maybe something else less awful and painful will end us. And until then, we keep the time best we can, making, working, resting, loving, traveling, celebrating, and recently...voting!

Bigger than the disease are the hearts of those who help me live with it day by gifted day—family, friends, medical teams, foundations, research and patient advocates, lung cancer community pals, creatives in the arts community, so many folk in my spiritual community (especially elders). They all look out for my well-being and give me hope that I'll still be writing and grateful five years from now.

It Pours

Partridge Pea

The day before Mother's Day this past May, my mom took a tumble while fetching the mail and face-planted at the end of her driveway. After being set back up on her feet by two passing Good Samaritans, she was rushed to the local ER by my niece, where the staff stitched up a few gashes and put what turned out to be a slightly broken hand in a soft cast. Just to be on the safe side, they took a few CT images of her head and neck, which were both okay. But...the images picked up an incidental finding: a mass in the upper lobe of her right lung. A fews weeks and a few more images later, plus a meeting with the doc, and we had a diagnosis—early stage lung cancer.

How about that? Now it's a family affair. Mom and I are lung cancer twinsies, sorta. Since Mom's fateful fall A LOT has happened. There was a big thoracic surgery to get the tumors out. There was a miserable hospital stay. There were my feeble attempts to look after Mom during that hospital stay. There was also, on the very the day Mom and I left for said hospital stay, the breaking of my husband's foot (which four weeks later we learned was not really a break, but probably a bad sprain, and that he'd just spent four weeks in a boot because an old fracture was mistaken for a new one). 

See that tiny fracture on the right
metatarsal? It happened about
60 years ago.

After spending most of July in New York with Mom, we drove back to Nashville with my husband sharing the backseat with our dogs and keeping his foot elevated on the folded-down front passenger seat (bless you Subaru for that design!). I should mention here that we'd toted our bicycles all the way to New York to ride our beloved rail trails and never used them once. So we toted them all the way home again, where they've spent most of the summer resting in the basement next to our similarly retired kayaks.

But in the meantime Mom is doing great! She's killin' it in her physical therapy! Her oxygen saturation level is steadily climbing. She's got a sassy new haircut and looks fabulous! Yay, Mom!

Mom getting ready for PT in the pool!

And THEN, sister calls me one 5:30 a.m. to report she and Mom are at the ER and things look dire! And they are! Kinda. It's a very dangerous pulmonary embolism. Mom is admitted and put on blood thinners. Eventually she goes home, still on blood thinners. Sister and Mom go to the onc, who has the findings from genomic testing, which say Mom's cancer is positive, get this, for the EGFR driver mutation!!!! Okay so it's not ROS1, like me, so we're not total cancer twinsies, but wow, right? The good news is that there is a very good targeted therapy called Tagrisso for EGFR+ cancer, so Mom and her onc are looking into that possibility for keeping her cancer in check.

But wait, that's not ALL! Shortly after we get Mom's PE under control, we learn another member of our close-knit nuclear family MIGHT BE FACING A SCARY CANCER DIAGNOSIS! I'm not going to say more about that yet because there are still too many questions around it, but I'll definitely keep you posted. What the hell?! 

Last thing, I promise. And this is especially for anyone who was kind enough to come to or tune into a poetry reading I gave last week. Yeah, that one, from which I beat a hasty retreat just as I started to read my last poem. That was me having a projectile vomiting incident. Uh huh. First time in public though (at least without alcohol involvement, lol!). TMI, I know. Sorry. It was horrible, gross, mortifying, and also, well, a little bit hilarious. But this thing with my poor digestion has happened enough over the past year, and quite intensively in the past week, so often that I was persuaded at least to pursue a diagnosis other than reflux. Heck, I even visited the ER myself and spent a few days in hospital so the doctors could poke around and come up with a few imaginative possibilities. And apparently, there are a few more unpleasant diagnostic procedures in my future.

All of this is to say, I'm good. No, really, very very good. Lots to be grateful for, many things going well. I'm just ... a little busy.

A Ladybeetle on Milkweed

P.S. I'm taking a seven-month long course to become a certified Tennessee Naturalist. I will, therefore, be decorating all my blog posts with random things I see on my walks. Hence the Ladybeetle and the Partridge Pea above. My aim in learning this curriculum is to eventually be useful as a Naturalist-Poet-Educator-Yogi. See, even with Stage 4 cancer, ya gotta have goals. 

P.P.S. This sculpture sat in front of the hospital where my mom had her thoracic surgery. I took this photo because I thought the sculpture was being ironic. "Heal" or maybe "Hale" if we read in rows down. Ha. The more time I spent with my absolutely exhausted mom in the hospital, where she was constantly sleep-deprived due to all the poking and prodding at all hours, and where she was fed unappetizing, tasteless food completely incompatible with what was happening in her body, convinced me that today's medicine overlooks the obvious in favor of protocols set by bureaucrats who have never themselves been patients. The two most important needs for healing, rest and healthful foods, are not ever provided by hospitals. I'm sure there are studies on this, but seriously, how is a person supposed to get well in one of these places?! Things have got to change!