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

 

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!

Seeking...

Chances are you or someone you know has experienced depression. It's endemic to life in these broken times. I mean, who can take in any of the daily news and not be stunned by what feels like an increasingly oppressive, hostile, and violent world, one lacking in compassion and, well, common sense? While we all cope with these stresses in our own way, therapy is already in order for many of us, eh? And compound the usual depression-triggering stuff with illness, grief, loss, plus anticipation of early mortality, and you've got a bit of a messy emotional stew. I know that has been true for me and many other people I know with cancer.

In Cancerland, mental health therapy is sometimes regarded as "palliative care." That term, "palliative," has always had a strong association with hospice and end-of-life care/pain management, with the aim of helping patients stay comfortable, relatively pain free, and allowing them to die with dignity. But that idea of "palliative" is limited. "Palliative" in the broadest sense means "remedy" or "treatment." Sometimes, in the adjective form, it is used pejoratively to suggest a treatment that doesn't address the root cause of an illness, as in "pain medication is just a palliative." But more of us in Cancerland and the medical world in general are coming to understand "palliative care" as treatment that works in concert with other medical treatments to help us feel better, not just when we're dying, but at any point in our healthcare continuum. Those of us with metastatic disease may never be truly "well," but we can experience "well-being" often with the help of palliative care. So massage therapy, medical marijuana, guided meditation, fitness training, acupuncture, nutritional counseling, spiritual retreats, and yes, mental health therapy all count as "palliative care" when they are related to addressing the effects of cancer and cancer treatment. Which is kind of funny, since doing those things when one doesn't have cancer is what we call "a healthy lifestyle" or "self-care." Too often this sort of palliative care is regarded as a luxurious "extra."  It's not extra. It's important. And one of the most important forms, and often hardest to get, is quality mental health therapy.

Over the years, I've had conversations with people in the cancer community about the challenge of finding mental health resources to address specifically the concerns of cancer patients, especially those with metastatic disease, and especially those with lung cancer. It's a tall order. While there are some therapists who specialize in working with oncology patients, it can be difficult to access their services. Often insurance will not cover the cost of therapy, and the out-of-pocket cost can be an issue, especially for people who may not be able to work thanks to disease-related disability. Oncology counselors are often attached to larger cancer centers, and if you're not being treated at one of those, you might not be able to book an appointment without an in-house referral. And even with that referral, there's no guarantee you and the therapist will be a good match. If you are working outside a referral system, it can take hours and days of rabbit-holing online to find a few likely candidates to treat your mental health challenges. And even then, again, it can be hard to tell if you and that therapist will click. If you don't, it's back to the rabbit hole, which tends not to be a really fun place for people suffering from chemo-brain or radiation-brain, which can affect attention span and cognitive processing.

I don't have any easy answers for this dilemma. Several friends have suggested seeking out a shaman, but that feels too much like cultural appropriation for me. Plus, spiritual "teachers" who label themselves as such tend to send me running the other way. If I lived in a different culture, one that wasn't so consumer-driven and materialistic, one that came with a built-in wise-woman right at hand just there on the other side of the drum circle, I'd definitely be hanging out in her tent. Friends are also a great resource for when the going gets tough, and while they aren't always trained therapists, their help does help, and more than a few of them are pretty wise. Still, I think there's a benefit sometimes when a person you're talking to about your concerns has at least a little bit of professional distance.

My insurance doesn't cover therapy, and without insurance support, therapy is expensive. There are some therapists who set fees on a sliding scale, but it feels weird to negotiate the cost of a therapy session. Plus, I'm still looking for the right therapist (and so are some of my friends in Cancerland), someone smart enough and intuitive enough to call me on my bullshit, and empathetic enough to let me just sit there and cry. Also, I'd prefer someone older, with a bit of a rind on them, and (I'd hope) wisdom that comes from experience. It's kind of a tall order, since I think most therapists retire by 55! Probably I'm looking for Yoda. Or that wise-woman's tent. 

Giving It All Space and Time

I've been taking mini-breaks from social media this past month, just a few days of total avoidance at a time here and there, or staying off of specific platforms, perhaps loitering on others. Often recently I've felt like closing down all my accounts on every platform (let's see...counting this blog that would make ten different platforms and accounts, with eight of them active). Each platform generates its own particular noise, and all of them together turn into a dull roar of advertisements, self-promotion, awful awful news, tons of propaganda, and other annoyances. Every day I think how much my mental health might improve if I ditched every one of them and communicated solely by carrier pigeon. But still.

I stay. I gawk. I scroll. For the baby-puppy-cat pics. For friends' and family members' funny, brilliant, heartwarming, and heartbreaking stories. For news of writing friends' successes and calls for submissions. For news of friends. For news of former students and their incredibly interesting lives. For cheeky, irreverent memes. For the short videos that give me ideas for art projects. And for the cancer news, a mixture of grim loss and tremendous hope.

This month, for me the news is good, as recent scans showed continued disease stability. And that is no small thing, but an enormous and undeserved gift. So if my story brings someone else some hope, as others' stories have done for me, then that's a good enough reason to keep writing and to stay connected in online forums. When I got involved in cancer social media, I did so looking for hope, and I found lots of it in blogs, Facebook support groups, and on Twitter mostly. But I've also read so many posts by people who are dying, or by people who are caring for people who are dying. Some days, I just close my laptop or delete apps from my phone and say "Enough!" 

I've had some conversations recently with other writers and artists about the grief any of us carries (not just cancer patients, but all who have experienced profound loss and trauma again and again) and how that does or does not inform or affect creative work. Some talked about how healing creative work can be, especially if it's outside the marketplace (not for pay or sale), though compensation is nice too. The challenge for many, though, was giving it all space and time. Sometimes grief and the air we breathe feel like the same thing, and all we want to do is get away from it, whatever that takes. But sometimes leaning into grief, trauma, despair, and sitting with it, and responding to it with art, poetry, stories, cookery, any affirming creative act—just making something, anything in response—honors that grief, and maybe quiets it or us for just a bit.

And so, over the past couple of months, I signed up for some art classes. And it's helped. I'm focusing mostly on my old friend paper-craft, doing collage and marbling. But I'm also doing a six week class that deals more with process and play (I mean like serious Montessori school type play) rather than technical aspects of art making. I don't know that I'm becoming a better artist so much as I am becoming more comfortable with uncertainty, with intuitive seeking in that uncertainty, and maybe that's a start. I'm trying to give it all time and space. 

And I'm sharing pics here and on IG and FB.

Not a Gardener & No Scans

I'm not a gardener, but I do garden. Having a garden, for me, is not so much an exercise in futility as it
is in benign neglect. I put some seeds/plants in the ground, water them, try to keep the weeds down, toss my hands up at the first sign of blight, and mostly let the plants manage on their own. We end up with some pails of cherry tomatoes and basil for pesto and enough fresh herbs to keep our summer fare savory. Husband complains how, after paying for all the stuff one needs for a little urban container garden, our Sweet 100s are the most expensive tomatoes in town. But we eat them in caprese salads all summer long.

Here's the remarkable thing. I'm here another year to watch my peonies unfold. Soon I'll get to see the hydrangeas cheer on the yard with their pink and periwinkle and white pom-poms. Again. So I sing a little song as I dig around in the dirt:"You can't always get what you plant/You can't always get what you plant/But if you try some time/You just might find/you get what you seed...yeah yeah...you get what you seed.

And just like that April is over. It has been a BIG month involving a BIG and beautiful shift in my reality that, at the moment, I am not ready to share publicly. But it's a really really really good change, miraculous even, and it has nothing to do with cancer. I hope to be able to write about it here, or in some other way sometime soon, but right now, I'm sitting with my new reality in a quiet all-to-myself kind of joy, which feels like the right way to be just now.

That said, I also don't have any cancer news to report about myself, anyway. I had to reschedule scans, which were supposed to happen this past week, but didn't, because I came down with a nasty bout of covid. That was no damn fun. Thankfully, the antiviral has worked pretty well, and I made a pretty quick recovery except for a lingering cough, a constant low grade headache, and fatigue. Husband got it too and is recovering. Each day is better than the one before.

So, stay tuned for May, for news of those upcoming scans, and a bit of news on the cancer advocacy side of things. The ROS1ders have some things brewing for the coming months, and it's gonna be GREAT!

Thank you for your continued love, prayers, and support. 

Hold On

Spring got to Tennessee while I was gone. When I finally came home from too much rambling (Tucson, Reno, Puerto Rico, New York), the first blooms were already fading. My hardy daffodils, which popped up in early February, had lost their glowing yellow heads, and wearing only their long green sepals, stood like lanky little sentinels between my neighbor's yard and mine. The forsythia was full-on frothy yellow, and I hadn't even seen the light green fuzz of buds unfurling. My neighbor's early hyacinths had lived better days by the time I lighted in the driveway, and the stinking Bradford pears, bald when I left, were shedding white petals like fast-falling snow. But the season hasn't been a total loss. My so-called-memorial-cherry-tree was still blooming five years and a day after we planted it in the back yard. Also, husband and I got over to Cheekwood Botanical Gardens for the tulips and found them sleek and bright, still holding on strong.

And that's what's happening generally, a lot of holding on. For instance, I got to have another birthday, my fifth since I was first diagnosed with a birthday-stealing disease. That makes fifty-nine and has me looking forward to finishing this decade around the same time next year, hoping to be as healthy as someone with metastatic cancer can be. That thought never crossed my mind five years ago. 

But I know not to take this relatively long period of disease stability for granted. Or to complain. Because things could, of course, be otherwise. The trick, as always, is to live every day with this diagnosis as if it's, well, a day I might not have had, but a day I do have, but not a day that defines everything about who I am or what my life means, but a special day, but an ordinary day nonetheless, but a day that counts, and who's counting? And why does it make me nervous? And is that a long dark train I hear?

So yeah, I finally saw a therapist, because, obviously. 

And as one does in therapy we talked about how when you have a diagnosis of an illness like this stupid cancer, that goes into and out of remission, that behaves mysteriously, takes victims indiscriminately, etc. etc...how everything, EVERYTHING feels URGENT, how you don't want to WASTE ANY OF THESE PRECIOUS MOMENTS, but you still have to clean the bathroom and put away the laundry and make some dinner and pay some bills, and do some work, and, well, do all the things. And look after your people. 

And people you know are dying of the same disease you have.

And you still have to be you, living your meandering, uncollected, disorganized life, same as it ever was. And even though you're doing the work to address your issues with mortality, to let go of whatever it is you are supposed to let go of, you're still schlepping the sorrow and grief and pain of the imperfect world and your increasingly imperfect self. Because, you've noticed that the longer you live, the more imperfect you and the world get. And once upon a time, you thought it was the other way around, that if you just did more of something and less of another thing and worked harder and tried your best, things—maybe even you— would at least...improve. 

And that's not always so.

No matter, I say. Hold on.

Just January

January lays me out. In Nashville we get a few bright days, but mostly the skies are overcast, and darkness still comes too early for me. We do too much sitting and looking at screens. It's too cold to do much outdoors. And the sedentariness has been made worse with omicron COVID tearing through town, so that I avoid my usual indoor haunts, like the gym and the stupidly crowded nightclubs. But I still somehow talked myself into getting on an airplane to go a-visiting. I know, I know...there is all kinds of denial happening in that choice. But I had to go. To shake the drearies. So, I dashed off for a few sunny days in Tucson with friends Claudia & Bruce, then high-tailed it to the sunny (and cold, but still warmer than Nashville) arid cusp of the High Sierra in Reno to visit sister Amy, leaving John to tend the dogs and other household doings. I've managed to get some little bit of work done on cancer-advocacy projects, about which I'll say more when the things are actually finished and up and running. 

So, not much news at the moment, other than to say sometimes one needs a break from the dullness of winter, though I'd hate to admit my snowbirdism when I already, technically, live in the American South! February is nigh, with a Nashville spring not far behind. This week I'm back to work in a busier way, grateful for this hiatus which took me to a rock/gem show (outdoors under tents) in Tucson and along the Truckee River in Reno. I'm still floating on December's good scan news, and keep thoughts of April scans pushed back in the darker crevices of thought so as to stay focused on these happy bright days in the west.

Tucson Rocks & Gems

Truckee River Looking West

I've Been Trying to Write This

A lot of cancer patient support these days takes place online, especially for people with rare cancers who are few and far-flung. So patients "meet" in Facebook groups, or on Zoom; they share stories, give each other advice about treatment, carry on research advocacy and fundraising together, participate in awareness campaigns. It’s so incredibly helpful and hopeful to communicate with and be a part of this diverse group of people living with cancer. But it also breaks your heart.

Because someone you “know” from a forum online, say someone in complete remission, is no longer so. Another whose tumors were stable, you learn, now has tumors that are growing. Someone who was improving is suddenly in hospice. You're sitting around waiting for your next scans and someone else you "know" has scans that are "mixed results" or "bad news." Someone else who was "cancer famous," a well-known beloved patient advocate, dies. 

None of it is actually all that sudden. You know it's coming; you follow the blog posts, the tweets, the FB posts, all less frequent as the person you "know" moves closer to the end of life, and then the post is in a different voice altogether, the loved one sharing the obituary. The losses come heavy and fast in Cancerland; the disease is relentless, indiscriminate, unforgiving. You are gutted. And.

With each loss, each setback in another patient, you feel that thin hot wire of dread wrap itself a bit more tightly around your heart. You taste the gall of loss (even though you only “knew” them online!) and find yourself increasingly triggered by phrases like ¨she ran out of options,¨ or ¨she ran out of time.¨ You wonder what your next scans will bring. You wonder if you’re somehow squandering this gift of life, however temporary, on fears and complaints instead of serving others well, instead of finding your true path. The days and nights feel always a little—and sometimes a lot—fretful. Or just plain sorrowful.

Frankly, it’s not a great way to go through life. In fact, off the top of your head you can think of about a billion ways of living that are better and way more fun. But there are also much worse circumstances one could be in, worse illnesses even, yes, worse than cancer and way more debilitating.

Anyway, it’s the life you’ve got. Carcinomie life. So you do your best to shape each day into a lumpy, grateful prayer, even in the face of this thief of joy. You think of the future in terms of months, weeks, days. Years are an abstraction. You make plans because you refuse to let the thief in. You keep your courage up and go about your day-to-day, trying to get it all in. Trying to help. Trying to do a little something in the time left. You aim to be cheerful, to act like a decent human even though you’re angry at these ravages and your heart is breaking every day.

And then you look up and it’s nearly Christmas, time for your own scans. And you hope on hope that you get exactly the same gift you received the year before, clear scans, good health, and the chance to make some plans for the New Year. You know you don’t deserve it, that people much better than you, smarter, harder working, parents of young children, grandparents, gifted artists and scientists, you name it…that cancer, especially lung cancer, has stolen them away too soon. 

Then, your radiation oncologist comes bursting into the room before the nurse has even finished vitals and you can see her smile, even under her COVID mask, and you know. This year, you get to pass Go. In fact, this morning you found $150 stashed deep in the pocket of an old purse, but didn’t want to take it as a sign because that felt wrong. Anyway, you’ve had more good fortune. You don’t deserve it. But no one deserves lung cancer either. So you do what you always do, what you always did at the end of each academic semester when you used to be a professor and the wheels had come off on your teaching and student failures felt personal. You resolve to do better. To be better. Or at least to pay more attention to each day and to find what is holy in it, to be grateful for that gift. It doesn’t feel like enough. It never does.

 

It Was Not a Coincidence

My first of several meetings today happened to be with David Ponoroff and Meg Wade of Larkspur Conservation, a nature preserve for natural burial here in Tennessee. David is the assistant director at Larkspur, and Meg is a poet and Vanderbilt University grad student in Divinity. She's working with Larkspur on a number of projects, and not too long ago, I happened to take one of her writing workshops on the elegy. I sat down with the two of them at The Cafe at Thistle Farms in Nashville early this morning to talk about all things Larkspur (more on my reasons for that conversation in a bit). Ten days previous, when David and I had set the date, I intuited that there was some significance to November 9, but at that moment, I pushed the whisper aside and forgot about it.

Until today. I woke up remembering that this November 9 marks four years since I was diagnosed with metastatic stage 4 lung cancer. It also happened to be the day that I gave David all the signed paperwork and a deposit for the two burial places John and I are reserving for ourselves at Larkspur. Also, my last set of scans back in September showed that my cancer is still "asleep" and I have no evidence of disease. So what the heck was I doing meeting with the Larkspur people? On my fourth cancerversary no less.

It was not a coincidence. I'm beginning to believe that nothing is. Burial at Larkspur is something I've been planning since my diagnosis in 2018, but natural burial has been on my mind since long before I got the cancer. I do know that making burial arrangements, especially for a place like Larkspur, was one of the most life-affirming things I have ever done. When the time comes (not too soon, though!) my bones will sleep there for eternity, and the thought of that brings me great peace in the here and now. It makes my life better and more beautiful today, in this moment. The decision aligns with my values and longings—to conserve and preserve our wild, natural places, to use land rightly and for the good of all, to be one with all creation. Our actions and decisions have consequences for the land, even in death. I want my legacy on the land to be one of minimal harm. If my decision results in an action that helps sustain the earth—which sustained me for all these years upon it—then so much the better.

Larkspur is a natural sanctuary teeming with life. Even in December, when John and I toured it with daughter Rachel and son-in-law David back in 2019, the place was rustling with small creatures burrowing in the tawny high meadow grasses, and winter birds and squirrels nestled down in the cedars and oaks. Larkspur takes its name from the proliferation of the lovely purple wildflowers that cluster in the preserve each spring. One must make a short hike into the burial grounds from a small parking area on the side of a country road. Some folk are buried in the high meadow, some in a glade near a brook, some on a forested ridge. Some of the places are marked with a natural stone (no engraved polished marble or granite here) or a native tree or wildflowers, some only by GPS coordinates. None of the people buried there have been embalmed, and their bodies are clothed only in natural fibers, wrapped in a simple muslin shroud, and, if there's a coffin, it's made of wicker or simple pine. People's cremated remains are buried at Larkspur as well. When the grave is dug, the soil is removed in layers and restored to its original layers during the burial, because the earth is a living breathing being, a holy creation. 

In fact, Larkspur invites people to walk the preserve for pleasure and remembrance. It is, after all, a place for the living, perhaps even more than it is a place where we may bury our dead. In fact, fees paid for burial go to sustaining and growing the natural preserve in perpetuity, for the benefit of all. Thus, one's burial in that place sustains the soil and mycelium, the entire ecosystem, and the economy of the wild.  What investment in the living future could be better than that?

I Pray for Allergies

 Sunday morning I woke up dizzy and prayed. Please God, I said, let it be allergies. And that’s how it goes when you have metastatic cancer; you pray your symptoms, which in a worse case scenario could point to cancer progression, point to something else instead. Like dizziness, a symptom I’ve had on and off for much of my life, usually at the change of seasons, usually because I’m having some kind of allergy fit that creates sinus pressure that creates vertigo. Or…something else? If I didn’t have a cancer diagnosis, I’d be cursing my allergies instead of praying to have them. It’s all a matter of perspective, eh?

So this is to say that after some lovely self care and a lymphatic massage by my very gifted healer stepdaughter, the dizziness is subsiding, which means it probably was the all-too-familiar vertigo caused by allergies and not the brain tumor I fear. Relief. But many lung cancer patients I know think this way: Please let this symptom (pain, dizziness, balance issues, swelling, etc.) which could mean disease progression, actually mean something else.

I do other things beside think about cancer all the time, though. Like this past summer, husband and I got ourselves across the pond (yes during a pandemic), and, with the considerable help of our good friend Ivan, trekked around Holland, France, Spain, and Portugal. Me and my dear ones and my cancer diagnosis. The best part of that trip was, of course, being with husband and dear friends along the way. The second best part was that I got to do a few long walks from St. Jean Pied de Port in France to Pamplona, Spain, three stages along the holy pilgrimage, El Camino de Santiago, through the Pyrenees. How kind people were on the route—hospitable, chatty, gracious, glad to see pilgrims returning and walking through their gorgeous little villages, stopping for coffee or a leisurely Spanish lunch and hostel bunk. The small kindesses of the trail, a passing greeting “buen camino!” spectacular mountain views, a traffic jam of sheep and goats, sore feet, weary bones, deep sleeps and early rising for more, all lovely, soul-nourishing stuff. Being a pilgrim is humbling. We really do depend on the kindness and hospitality of strangers. We walk with and are welcomed by compassion.

I won’t say that I forgot about having cancer on that trip, because I didn’t. But as I walked on the Camino in Navarre and visited more of its landmark cathedrals in other cities in Northern Spain, I carried hopes and prayers for all the people I know who are dealing with some form of cancer. If you’ve ever sat in a packed oncology clinic waiting room (and they are always, always, shockingly, packed) you begin to sense how many people’s lives are affected by this thief of joy. In some ways the commonness of cancer makes it seem not even worth noting. Everyone either has cancer, has had cancer, or loves someone who has, has had, or died of cancer. It’s so ordinary that it’s practically banal. Having cancer isn’t special; it’s typical. But perhaps that’s what makes it feel so tragic; the scope of this ordinary human experience of illness is stunning. And it’s brutal. Those who have cancer find themselves pilgrims in a strange land of diagnosis and treatment, hope and fear, pain and pain and pain. We depend on the kindness, compassion, and skill of others to care for our bodies. Sometimes we come to rely on others for a little help with our souls. That’s what this cancer pilgrim was up to in Europe this past summer, and what she’s working on now…the soul part. More on that in future posts. For now, I wish all my fellow travellers un buen camino and hope you’ll wish this sojourner the same.

White Ribbon for Lung Cancer Awareness at La Playa de la Cueva

Try a Little Tenderness

 

May 2021 is a wrap; summer is rolling in with gusto as folks are tentatively climbing out of their pandemic hideaways and getting the hang of what it means to be out in the world again. We're not home free, but it's getting safer with each vaccination. I've spent the past few days enjoying the company of my sister Amy in Reno, and that's been grand. We hiked the graffiti-filled Donner Tunnels (gravel floors still wet and slick from Sierra snow melt); we strolled around the city, and today we kayaked on the sparkling waters of Lake Tahoe under a crystalline blue sky. To cap off a perfect day at the lake, we had lunch and day drank at a posh little place by the water.

This is to say the recent days have been good. Really, really good. 

This past month also gave me the opportunity to work with the Congressionally Directed Medical Research Programs (CDMRP) as a consumer reviewer for the Lung Cancer Research Program (LCRP). In that capacity, I'm getting to read and evaluate from a patient-perspective research proposals for some of the most innovative approaches to treating lung cancer. Basically, I log onto the system, get a sneak peak into the future of lung cancer treatment and say "Wow, that's cool!" I can't go into specifics about the proposals here because those are the rules, folks. But I can say what I am reading gives me hope. Some of the best minds in cancer research are on the job, and that means new treatments for lung cancer are heading for the development pipeline. Fingers crossed that the new treatments reach the patients who need them before their time runs out.

Speaking of which, as a person living with metastatic disease for 3+ years, I've seen too many others of my ilk taken by the disease, in just these short years that I've been paying attention. And it's heartbreaking, not to mention discouraging. Each time I have good scans, I rejoice, thrilled at the prospect of spending more time here with all y'all, grateful for this gift. But now, I have some time behind me as a carcinomie. I'm not as fixated on my own survival thanks to a longish period of stable disease (scans coming up next week...yikes!). And, well, because of social media, and age, boom...all of the sudden, I "know" LOTS of people with cancer, most of whom I've "met" online within the last couple of years. And too many of them are dying. 

I wish I'd been more sensitive to that right from the start; for every bloggy word of my good news, someone else had a 500-page book full of bad news. Grief and hope sit right next to each other at the Greyhound station, neither acknowledging the other's presence. They travel in a tight pair, always. I wish I had had the wisdom to see how tiny the space is between grief and hope, how when one is in that space, there's not a lot of room for grand gestures, or even breath. And I don't mean just for folks with cancer, but really for anyone on any margin, or, well, just anyone. Maybe if I had recognized that sooner I would have treated the world more tenderly. I hope I do going forward.

Days of Beauty and Sorrow and Beaded Prayers

We walk in beauty, the Navajo say. Sunset pinks up the evening sky. A waning moon mottles the night clouds. On Facebook, a woman I've known since we were kids in grade school posts her most extraordinary photos of wild birds and fabulous sunrises on the river. I look out my window and see the rain has made confetti of our azaleas, knocking at least half the blooms down into bright, frilly piles on the grass. I'm waiting (once again! miraculously!) for my peonies to bloom. My neighbors—young couples, their helmeted kids on bikes, and dogs in all sizes—parade up and down the street on a fine day, wrapped in something that looks like joy. We walk in beauty.

A friend's brother has been hospitalized for weeks, having barely survived a house fire. He's doing better each day. The same friend took a spill at my house and badly hurt her foot on the same night another friend took a terrible spill in her kitchen as she was serving up a beautiful dinner. She bled rivers from her smashed nose and mouth. Another friend's spouse has cancer; another friend's husband just died, another has lost her father. In fact, I think, every time I look at social media, I feel like an elderly woman reading obituaries. Ha! I AM an old woman reading obituaries. We walk in beauty.

There are moments in my day when I forget I am a person with lung cancer. There are days when all I think about is lung cancer. And despite my dedication to brushing and flossing, my dentist says I have irreversible bone loss and will lose my teeth if I don't let the oral surgeon put some pig bone in my jaw. I tell her I have metastatic cancer and would rather use the surgery money to take a nice trip. She understands my choice. Europe will open back up eventually, and I'll go traipsing through the Pyrenees, dropping my teeth one by one along the camino as I go, like grotesque breadcrumbs. We walk in beauty.

At Crystal Bridges Museum of American Art in Bentonville (headquarters of Wal-Mart), Arkansas, they currently have a special exhibit of American crafts. In that special exhibit is a work by Sonya Clark called Beaded Prayers. It is made up of over five thousand small works of art collected over twenty years from people in thirty-five countries. Each participant writes a prayer on a small sheet of paper (two copies, actually) and makes two cloth packets to hold each copy of the prayer. The prayer is inserted into the packets, which are either beaded or tied closed. One packet travels with the exhibition; the twin goes home with the participant. I sat in that gallery surrounded by all the little prayers. It was like sitting in a chapel or a reliquary. I could feel the holiness around me, the beseeching and the gratitude, and I wept. 

We walk in beauty.