World Lung Cancer Day is About Transformation

 

Hello Friends,

Butterflies are symbols of transformation and beauty, as well as symbols of hope. Today is World Lung Cancer Day. It is a day to remember those we've lost to lung cancer, a day to celebrate the progress we've made in developing new treatments and in catching lung cancer early, AND a day to look forward with hope toward research that will continue to reveal better, more effective treatments, and perhaps someday a cure for this most lethal of cancers.

Please visit my LinkTree to find connections to a number of lung cancer organizations that have supported me over the years.

I am in my ninth year of living with lung cancer. Diagnosed at Stage IV, things looked a bit grim early on. Two years of a mixed bag of treatments got my disease stabilized, and thanks to a targeted therapy that I accessed originally through a clinical trial, I am here today to share my story. Yay for research!

Not everyone is so lucky. Lung cancer often mutates very quickly in response to treatment, and disease progression is common, even after years of stability. That means we need to constantly be working to find new treatments, and someday a cure. 

Lung cancer is notoriously hard to treat. That's because it isn't just one disease, as there are many types and many mutations that occur along the way. It's so important to keep our focus on funding lung cancer research.

I hope you will join me in supporting research! Your contributions make a difference.

Just Go With It

 

Just Go With It

This year the non-native ornamental 

This Year's Birthday Blossoms (barely)

weeping cherry tree bloomed 

early during a heatwave

and shed its frilly white-pink flowers

last week in a windstorm and last nip

of freezing air. Each year I take a selfie

beside or under my stubby tree

and her profligate ornamental bursting

on this, my birthday, the first day

of spring, a national holiday in Japan

(where they also love cherry blossoms)

and this year Eid al-Fitr around the world.

For years I embraced the myth

that one could balance an egg on its fat end

at the exact minute of the equinox

then learned you could that on a Tuesday or

any day or time with the right egg and a steady hand.

My mother says it was snowing at 1:14 a.m.

when I was born in a northern city

on the first day of spring, so I let that

be a metaphor for something

and sometimes there is still snow

Thick blossoms in early March

and yet each vernal equinox is a setting out

into a relentless wispy greening toward summer.

We planted the cherry tree in memoriam of

a prognosis: my imminent death, which after

nine years is perhaps less imminent or maybe not

because who knows how the divine mind goes?

I try not to read too much into the early blooming

and pre-birthday devastation of tree flowers (climate change

never-ending oil wars, the shitty way our countries 

are ruled by the corrupt, all those cruelties we perpetrate

on the weakest among us) and just go with gratitude

for all the text messages reminding me I am loved

just go with this day's grace into the light coming 

down through all the cracks, just go knowing

and knowing the answer to love is always yes

and more love.

(PS: This day marks my 63rd trip around the sun...I am setting an intention to write at least 63 poems this year and make 63 pieces of art.)

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