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.