LiveLung and Prosper

 

Not long after I received a metastatic lung cancer diagnosis in 2017, I learned about the health disparities surrounding lung cancer treatment and the lack of federal funding available for research. I also learned how lung cancer stigma and the mistaken belief that only smokers get it can create barriers to research and treatment. There were lots of statistics coming up in my frantic Google searches about lung cancer, especially ones about the low survival rates of people diagnosed with the disease. At the time, the terrain of Lung Cancer Land I'd just entered looked foreboding and grim.

And then I got a phone call. The voice on the other end of the line belonged to lung cancer patient advocate Patty Watkins. She was the best friend of the mother of friend of mine, and that friend had asked my permission to put us in touch. At the time, all I knew about Patty was that she too had lung cancer. As it turned out, that phone call was the beginning of a friendship that quite literally was a lifeline. Not only was Patty living with Stage IV lung cancer, she'd been doing that for six years! She was, by most accounts, an outlier in her extraordinarily long survival at a time when folks with late stage diagnoses were often living only months into the diagnosis. And in that time, she had become a fierce patient and lung cancer research advocate. She knew everyone doing all the important advocacy work in the LC community, and she'd raised thousands of dollars for lung cancer research.  Months later she saved my life by insisting I enter a clinical trial in Boston. And she and other folks I met through her encouraged me to get involved in lung cancer research advocacy. Sadly, I lost my friend and mentor to that horrible disease in 2024, after she had lived over 13 years with the disease! I like to think Patty left her fighting spirit behind with those of us who were inspired by her constant striving for better lung cancer patient outcomes through research, new and better treatments, and, someday, a real cure.

During the years since my own diagnosis, I have participated in lung cancer patient and research advocacy through various organizations like The ROS1ders, the Lung Cancer Action Network, Lungevity, and The GO2Foundation. This summer I accepted a position as Tennessee State Coordinator for LiveLung, a lung cancer patient support and education nonprofit. LiveLung provides excellent educational opportunities for patients, as well as beautiful support communities both in-person and online. Now my advocacy efforts are focused intensively on my own community here in Nashville, where I am building a support network of patients, caregivers, and lung cancer treatment providers. We'll be meeting monthly in person, and cheering each other on through all the challenges and traumas living with lung cancer throws at us.

If you have lung cancer, or you know someone who does, please reach out to us. You can learn more about LiveLung here: LiveLung.org , and register for our monthly meetings, which feature guest speakers and include lunch. We're here for you!

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 6 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.