Tuesday, May 31, 2022

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 stability. And that is no small thing, but an enormous and undeserved gift. And 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.

Saturday, April 30, 2022

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. 

Thursday, March 31, 2022

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.

Tuesday, February 1, 2022

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

Wednesday, December 22, 2021

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.

Tuesday, November 9, 2021

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?

Monday, September 27, 2021

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

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 ...