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




Tuesday, June 1, 2021

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.

Friday, April 30, 2021

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.



Wednesday, March 31, 2021

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.





Tuesday, February 23, 2021

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.

Monday, February 8, 2021

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.

Monday, January 11, 2021

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.








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;...