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.

The Present Imperfect

"There are some things we can change and some things we can't. It's okay that life isn't always getting better. We can have beauty and meaning, community and love, and we will need each other if we are are going to tell the truth. Life is a chronic condition, and there's no cure for being human."

                                                                            --Kate Bowler,  from the podcast  Everything Happens. 

March is one of those weird hybrid months that sits between actual seasons—neither fully winter nor truly spring, a tease of a month, restless, shifty. It's probably not a coincidence then, that my birthday happens to be in March, on the first day of spring, the twentieth. My mother reports that it snowed the day I was born almost six decades ago. This year the day was warm and sunny, nice enough for us to have a small gathering of family and friends in the backyard, which was lovely. Now, on the last day of the month, the temperatures are dropping to below freezing as the winds rise.

I used to try to ignore my birthday—not because I worried about getting older, but because celebrating it seemed to me...self-aggrandizing and maybe a little childish. Oh, I love going to other people's birthday parties, such jolly occasions, but as a grown human, I was never that comfortable with a fuss being made on mine. Sometimes there'd be a party, but if so, I'd give out that we were celebrating the vernal equinox, which just happened to coincide with my birthday. I took every trip around the sun for granted. But now, well, the big C. So these days, I'm definitely more grateful for another year on the books. Or in the blog. Whatever, I'm gonna honor it.

Birthday photo with weeping cherry

March, for me, is also the season of Lent. Even in the years between early adulthood and midlife, when I wasn't a regularly participating Catholic, Lenten observances still held meaning for me—fasting (no meat on Fridays), abstinence (giving up something) prayer (repentance), mercy, (charitable giving). Oh sure, we can engage in any of those things at any time, but to do so in community with others in this fickle between-season season, and to do so consciously, with intention, feels especially potent. In meditating on the brokenness of the world, the frailty and failings in our own selves, confronting our mortality, we're facing truth head on. Humanity exists in the present imperfect.

Truth: It's likely that I'll never not have cancer. My best hope, right now, is that treatments will advance enough so late stage cancer will be a chronic health condition kept in check with precision medicine. Even if something miraculous occurs that cures the cancer, in ever so many years, I'll have some other health issue to tend, and something else after that, and on and on until. It's hard not to be disgusted and frustrated with a body destined for failure, no matter how well (or how poorly) I care for it. Even though it all breaks down eventually, a human body is still a pretty wondrous thing, as is the soul inside it. For those of us who do have the luxury of aging, perhaps Lent makes human suffering a bit more present. Perhaps, as it deepens our empathy for others, it helps us find some for ourselves.

This One Is Rough

"This may be harsh, but living with my diagnosis has taught me that what you have is THIS. Right now. This time IS your time. Don’t wish it away. What you have now might BE the good days. So enjoy what you can of THIS."

                                                                                                -Tori Tomalia

Tori Tomalia was one of the first people I met who, like me, had been diagnosed with ROS1+ lung cancer. Well, to be honest, we never actually "met" in person, but the first time I sat down and Googled "cure for stage IV lung cancer," a link to her blog turned up just a short scroll down a page full of links to prognoses of doom. I read what the medical experts suggested about my disease and tried hard to get my mind around terms like "disease progression" and "morbidity." Things looked pretty grim.

And then there was Tori's blog, A Li'l Lytnin' Strikes Lung Cancer: Living, Loving, and Momming It Up with Stage IV Lung Cancer. It chronicled her life through, at the time, five (yes FIVE!) years of momming it up with a Stage IV diagnosis, but also reached back into earlier years, when her blog had a different name and told the story of her travels, falling in love, marrying, the births of her children, and life with her husband and three kids. 

The blog was funny, forthright, spirited, and hopeful. Her tone was so personable and engaging; it invited you in. Somehow, she could tell a harrowing story about living with cancer in a way that could make a reader laugh, or at least chuckle. Tori, it turns out, was a comedian. For real. AFTER her "terminal" cancer diagnosis, she and her husband, Jason, opened a brewery/comedy club in Ann Arbor, called Pointless Brewery & Theatre, where they made beer and made people laugh. They also ran classes and workshops in comedy and improv performance.

And she lived for eight years with a ROS1 diagnosis, surviving from clinical trial to clinical trial, treatment to treatment, as many of us do. She passed away this week.

In addition to founding a brewery/comedy club with Jason, Tori was a founding member of the patient advocacy group The ROS1ders, which supports patients and caregivers affected by this rare cancer, advocating for research, access to clinical trials, and building a community of patients, caregivers, clinicians, and researchers around the globe. I am grateful for this group every single day.

To live with a metastatic cancer diagnosis and to take up with a community of others who share that diagnosis, even an online community, means, inevitably, despite all the good things that community brings you, you'll be confronted with loss. Like lots of it. People with metastatic cancer live longer than they used to, sometimes, thanks to advances in treatment. And we are ever hopeful that the science will outpace the disease. But still, we run out of time.

I didn't know Tori. Not really. I'd never met her, except in Zoom meetings. But even without meeting her, it was easy to know that she was one of the really really good humans on the planet. She made the world better just by being in it. I miss her already.

Mayonnaise

I FaceTimed recently with a friend who has suffered from low vision all her life. It wasn't until she was a middle-aged adult that a doctor finally declared her legally blind, though she probably could have qualified much earlier. Up until very recently, with the use of adaptive technology, she could see super-enlarged type on the computer, make her own meals, and even do a bit of quilting. Though she hasn't been able to drive in years, she's been able to live relatively independently with some help from part-time caregivers and delivery services. That changed a few weeks ago when an ocular migraine further clouded her already shaky vision. 

She told me it feels like someone suddenly put mayonnaise over what was left of her sight. Now the light gets in through a white translucence, and there are shapes, shadows, things in motion, but when it comes right down to it she can't see. She just can't see. And she lives alone. It's terrifying.

My friend is seeking treatment, but appointment wait-times are long, and she has to arrange for transportation, which is not so easy in the rural/suburban community where she lives. She can't just call Uber or even a taxi service, and she hasn't the means, nor the desire to move to a place where such things are ubiquitous. Even if she could summon a car, her limited, fixed income would make using such services prohibitive, and the free services available to people with disability tend to be erratic in their scheduling.

Oh, and there's a pandemic, which makes all of that more complicated and worse. Of course.

So we talk about mayonnaise and make offensive blind jokes and cancer jokes to keep our spirits up. We also reminisce about that time decades ago, in school, when we thought we could do or be anything we wanted, which for us meant having lifelong careers in academe, enormous private libraries in our houses, and scholarly projects that required sabbaticals in the south of France. Instead, we're adorably chunky, late-middle-aged, learned women living creatively on slender means and making awful jokes about awful situations over a video-link like dystopic Jetsons.

I say to her "My brain feels like it's been mayonnaised." Every thought is slippery and cloudy. Cancer people call it chemo-brain, or brain fog, but I like my friend's simile better—mayonnaise being in places it shouldn't ever go. I have never liked mayonnaise, never willingly put it on sandwiches, won't eat salads made with it, etc. I even skipped the mayonnaise in France, where I've visited twice, and where, I'm told, it's particularly good.

So that's my advice. Skip the mayonnaise. Definitely don't put it in your eyes or your brains if you can help it. And don't get cancer or blindness. Or coronavirus. Stay as well as you are able, lovelies. I like being here with you, even in a pandemic.

The Condolences

I have typed the phrases "My condolences" and "I'm so sorry for your loss" into my various social media posts way too often—almost daily, sometimes several times a day—for the past few months. In part I blame my demographic. I'm a late-middle-aged woman with metastatic cancer trying her best to stay alive in the midst of a serious pandemic, a pandemic which also has exacerbated the opioid epidemic and prompted a rise in suicides. So many of my friends have lost not just one family member to COVID, but multiple—both parents, sets of grandparents, all four grandparents, cousins, uncles, aunts, siblings, children. The catastrophic loss of elder wisdom in our culture will leave us bereft for generations. Others have been so sickened that their quality of life for their remaining days is profoundly altered by permanent disability. I've expressed my condolences to so many friends and family members of people killed by COVID, and because I am connected to folks in the cancer community, we've had many final farewells there too. In some cases of people I know with cancer, COVID was the reason for their passing, and cancer was cited as a "co-morbidity." I'm not a physician listing cause of death, but it seems to me that if a person with cancer contracts COVID and dies of respiratory failure, the cause is COVID, not some co-morbidity.

What an awful thing to ponder, your co-morbidity. Ugh. And to have arrogant, healthy politicians arguing about which caused a victim's death, the COVID or the "co-morbidity," is insulting. It reveals their ignorance about the risks we all face from pernicious respiratory illness, as well as their disregard for those of us who are at greater risk through no fault of our own, including the elderly. (The politicians on the right especially talk of how it's mostly the elderly being at risk, as if our elders are just expendable, so long as everyone else keeps well, which isn't happening, by the way.) Am I more likely to die if I get COVID than someone else without cancer would be? Probably. But will the cancer have caused my death? The combination of COVID and cancer? Or just the COVID, since my immune system has been busy keeping my cancer in check? It wouldn't matter to me. I'd be dead. 

And yet, currently, people with cancer under the age of 75 don't necessarily yet qualify for priority vaccinations where I live. So, that's not awesome news.

My socials have carried the sad news of many deaths from other causes too. The suicides. The car and motorcycle wrecks. The overdoses. The celebrity deaths (from COVID, cancer, overdose, suicide, old age). The beloved, aged relatives whose time had simply come. The beloved pets who crossed the rainbow bridge to pet heaven. My Facebook feed is o'er full of obits. I type, over and over and over: My condolences. I'm so sorry for your loss. Prayers for you and your family. Lifting you to the light. Etc. Etc. And I mean every word of it, and even more than those formal words say. What I mean is this: if I can hold even one tiny particle of your grief for you, help you carry it in any way, I want to do that. Because you've helped to carry mine. It's what friends and family do, and even the most superficial of "friends" on social media do, because right now, there is just...so...much collective grief. We could all use a little help.

And of course let's not forget deaths in Washington, D.C. caused by the actions of thugs and traitors and a traitor-President who needed to be removed from power as soon as he started spewing lies about the election results. Don't get me started on that heavy shit too. Peace, peace, peace, y'all.

The bleak January skies are making me both rage-ful and ponderous. Thank goodness my Christmas amaryllis has decided to bloom. Also, there are buds on last year's orchid, and store-bought flowers to ogle as well. In a few weeks we'll see forsythia and daffodils gilding the lawns of Nashville. Beauty and hope of more. And gratitude for this life, even stained and torn as it is by grief. We're living it, even when it's hard. That's the balm, today, along with the hope for fewer condolences as vaccinations proceed.