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.

Happy Fourth

 

Happy fourth day of Christmas! It's also my fourth Christmas season alive on the planet since being diagnosed with incurable cancer. Yay for survivorship! On top of that, it's the first year since that diagnosis that the awful cancer hasn't been actively trying to kill me—my most recent scans show I've had a whole year of disease stability, in this, the most unstable of all years my generation has ever seen. So, ya know, deep, deep gratitude here, because I love a cruel irony that keeps an otherwise healthy, travel-loving cancer patient from running around the globe doing bucket-listy things during said spate of good health. But there's privilege at work. I didn't do anything to deserve being cut such an easy break at such an awful time. 

So here I am, for the moment, well enough to work (yay for editing projects!), and fortunate enough to do that work from home. Also on the list of blessings: there's a stocked pantry and fridge (and liquor cabinet). We got to see the bright--heavy conjunction of Saturn and Jupiter just over the horizon a few days before Christmas. We decorated the bare Bradford Pear trees in the front yard with Christmas ornaments and put up some lights and garland, and it only felt a little forced. I made a wreath and an advent calendar (both of which turned out okay) and tried to learn knitting again, and failed, again. My family gave and received nice holiday gifts (nothing too extravagant, everything thoughtful); we had delish holiday fare on the table, and everyone in my household and extended household has kept well.

Still, the shadows fall deep in the winter darkness, and they chill some part of my soul with fear and anxiety. Two of my best friends risk their lives every day on the COVID frontline, and I worry about them constantly. One of them got the virus and, thankfully, recovered after being pretty damn sick. 

December has some tough anniversaries for me too. Last year in December I lost two friends to cancer, one on December 4 and one on Christmas Day. The year before that, my dad died on December 3. As we approach a new year, I'm reminded that I lost another friend to cancer in this past year, another 2020 shadow. In March of 2020, my city was hit with devastating tornadoes, and on Christmas Day, just four days ago, a man bombed our downtown. 

And I'm still alive.

I'm doing, what they call in Cancerland—or probably in any Gravely Ill Land—survivorship. I'm living, with the disease in the midst of all that is crazy in the world. Phrases like "for now" "at the moment" "stable" "disease in check" pepper my responses to queries about my well-being, underscoring the temporariness of it, the other-shoe-ness, but also calling attention to the fact that I am in the most enviable of positions. I am well. Well enough, anyway. And I have friends and family members who have cancer and/or other severe health problems who are not well enough, who are struggling with treatment decisions, suffering from severe treatment side-effects, struggling to access treatment, friends who are actively dying as I write this.

I don't say that to be grim. We all live in this world, with its shadows and griefs and aching hearts, with lives approaching terminus. I'm not telling anyone something they don't already know. The losses, the anniversaries of the losses, mark the time for us; weirdly, they become steady points of reference in the before and after of this crazy kinked and loopy path we're on. Periodically the iPhone and the social media accounts throw up "memories" (gee thanks) that startle—oh! that picture was taken BEFORE diagnosis; that one was taken the last time I saw Ann, and that one was the last time we were all together. 

The one for this post was taken for The Fourth Day of Christmas in the fourth year of diagnosis. Four calling birds. Three french hens. Two turtle doves. And a partridge in a (Bradford) pear tree. Counting blessings. So many. So very many.

On Scanxiety

I have scans tomorrow morning. They are “routine,” a regular feature of the territory in Cancerland. These hulking clanking machines, these sound tunnels and sliding beds, making images of my insides with magnetic field & radio waves, with x-rays, with contrast dyes. 

I messaged a friend who has breast cancer the other day about the things cancer patients put their bodies through in order to stay here and hang out with all y’all cool people. The needles, the time spent in tubes getting pictures of one’s guts or brains made, the ports and drains, the insanely priced pharmaceuticals, the side effects. The stigma, especially with lung cancer. But it beats the other option.

When I first started having scans after starting regular treatment, I always got terribly anxious the day before. What if the treatment had stopped working? What if the machines found more disease, more tumors, more spots? What would I do then? 

Well, then the machines found spots. The cancer had outsmarted the inhibitor. So we tried a new inhibitor, and that worked for several rounds of scans. I was so elated the first time I heard No Evidence of Disease. But of course things didn’t stay that way. More spots appeared. We did infusion chemo and radiation, and went back to the inhibitor, which has held me for about a year now.

I guess what I mean to say, is that I still get scanxiety. And because my disease is metastatic, the reality is that it will probably return at some point. I’d like to focus on the “probably” in that sentence, because that gives us some wiggle room. Probably isn’t definitely. Still, the likelihood is pretty good that at some point something will show up on the scans. What that point in time is remains unknown. 

So, perhaps it’s not the prospect of the scans that produces anxiety, but rather the specter those scans raise of the unknown, of having to move from one way of thinking about the world and one’s health to another. The prospect of the sudden pivot.

The good thing is that at this point, we’re not out of options if something does show up. Still, I’d rather we didn’t have to discuss them this time around.

I’ve taken up a mantra to help steady my psyche while I’m in the scan tube. It’s from a 14th Century Mystic, a nun who lived in isolation for a long time and who eventually became an abbess. In the book of “showings” or Revelations of Divine Love, Julian of Norwich shares the wisdom she found in holy visions she had and in the voices she heard comforting her in a time of illness and distress. She believed in God’s assurance that “All shall be well, and all shall be well, and all manner of things shall be well.” 

She also, reportedly, liked cats, as shown in the picture above. 

I like to think of Mother Julian’s words writ large on the cosmos. No matter what happens with my scans.

And all shall be well, and all manner of things shall be well. 

 

Geese and Gratitude

Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.

                    Mary Oliver, "Wild Geese"

It snowed today. And got dark at 4:30. It will get darker for longer each day until December 21, Winter Solstice. I actually love late autumn—the grackles, winter's voice clacking in the trees, that brace of frigid air, the grey skies and foreboding of early-darkening days mixed with hope, the anticipation of light's return. November strips the last of the foliage off, and there they are—the squirrels' nests and mistletoe, the deer in the wood, the formerly hidden bungalow at the end of the lane, the orange berries on tough green bittersweet vines, the red on waxy holly. Yes, darkness, but also, revelation, evergreen, and bright spots of color. The season's bleak beauty has an archetypal narrative arc that resonates pretty deeply with my own temperament.

While I was walking through the neighborhood yesterday, I saw someone had painted the entire text of Mary Oliver's poem "Wild Geese" on a piece of wood and propped it up in their front yard for all to read and love. It's one of the best poems ever, and you can read it here if you don't already know it. I don't know who lives in this house, but I wanted to go up to this neighbor's front door and knock, and when they came out, I would have bear-hugged them and kissed them on the mouth, and said "Yes! Yes! Thank you for reminding me how beautiful this world can be, full of poetry and ordinary glories!" For obvious pandemicky and politeness reasons, I did not, but the yard poem is one of the things for which I am incredibly grateful this month.

This November has been blurry, no—I've been unfocused, vaguely fretful, an emotional mish-mosh of gratitude and wistfulness, and, yesterday, I was overcome with a kind of keening nostalgia brought on by over-exposure to Christmas lights in cozy windows during a walkabout on a cloudy day. Each day I set an intention (put up some damn decorations, write that letter, respond to so-and-so's email, finish editing that chapter, write those portfolio comments) and fail to follow it. I set another the next day and get halfway. My actions seem to trail off into broken sentences and half-formed thoughts. 

What the heck is wrong? 

Nothing.

It's been a year since I finished four rounds of infusion chemo and more brain radiation than I care to consider, and I still take oral chemo every day. Metastatic cancer patients are always waiting for that other shoe to fall, so nothing new there. I've been well through all of it, more or less, in this overall shitty year for everything else besides my body, with my disease remaining stable. Still, I'm probably about as depressed as the next person because of the pandemic. I admit that I got a little too obsessed with the election, but that's over now, and I've more or less detached from things political (except for the Georgia runoff) because they make me too crazy.

I'm okay. I have scans next week. I remain hopeful. So there it is, melancholy for no reason. 

Things I neglected this past month:

• Lung Cancer Awareness Month (I did a little lung cancer fundraiser in October, so I didn't think I should ask people for money again, times are tough, etc., and I was so sick of social media after the election that I just couldn't...I don't know...make the ask, again)
• Correspondence (email, letters, texts, thank you notes, etc., I promise I am not ignoring you; I'm just...ignoring everyone.)
• Diet (not gonna bore you with the details...just...ya know...way.too.heavy, thanks lorlatinib)
• Work (said yes to every likely project while still not finishing ones already in line)
• Fill in the blank (pretty sure I've left lots of things off the list, but you can let me know)

Good things that happened in November:

• Thanksgiving (a favorite holiday)
• Mom's birthday
• I finished editing a memoir by my friend Seth Walker, which is available for pre-order here:Your Van Is On Fire
• I've made progress editing another book on a really interesting and surprising aspect of Civil War history written by a gentlemen here in Middle Tennessee, and which I hope will be published in the coming year.
• I set up my fundraising page for the ROS1ders, to collect donations for research projects we have a direct hand in creating. I'd love for you to check it out and give us some $$$$ for research.
• I got to be featured in a video about lung cancer for a series that should run on WebMD in January.
• I put up some Christmas lights yesterday and got an Advent reader in the mail. John got me a little house-plant pine (Norfolk Island Pine) to decorate (we don't go in for cutting down live trees), and some poinsettias for the living room. So yay for summoning holiday spirit even though we're all so fucking depressed.

December Hopes:

• Raise more money for lung cancer research
• Good scans, stable disease (NED)
• Finish all editing projects for the year
• Finish all portfolio assessment work for the year
• Begin putting a poetry collection together
• Make some art
• Celebrate Hanukkah-Solstice-Christmas-Kwanzaa-NewYear's with joy and hope
• Keep showing up when I remember where I'm supposed to be

 

On Consequences and Cancer

This week, I finally got to take a genuinely deep breath, one I've been holding for four years. And not a day too soon. Tomorrow, November 9, is the third anniversary of my metastatic lung cancer diagnosis. That's right; one year after our last presidential election, the outcome of which I thought was one of the worst things that had ever happened, I got even worse news. I—a non-smoking, kale-eating, yoga-practicing, peace-loving, 54-year-old healthy woman—had (and still have) late stage lung cancer. There are things worse than President #45.

Today, I am breathing more easily both literally and figuratively. Thanks to excellent care and cutting- edge treatment, my most recent scans show that the very rare form of lung cancer I have is currently stable. And thanks to what I consider to be a hopeful election, I am less fearful about my ability to continue to access great health care here in America.

Americans go to the polls in their own self-interest. When they step into the voting booth, they take with them their parents and grandparents, along with their kids. They take their work, their health, their schooling. They vote with their gender, their race, their age. They bring their religion and/or other ideologies that they probably inherited from their parents. They take their wallets and houses and communities. They take whatever priorities they have and vote for the people they think will best address them.

I voted for myself. I voted for my cancer. So I couldn't vote for the candidate who scoffs at science and scientists, who has allowed a pandemic to rage, unabated, and who, for four years, promised "beautiful" health care reform that never showed, and instead, gutted the plan we already had. I couldn't support an administration that cut funding to important health care institutions and agencies, like the National Cancer Institute. Instead, I voted for a candidate who supports universal access to affordable health care, and who, before he ran for office, ran a cancer foundation to honor his son who died of brain cancer, a candidate who understands that the answers to solving our greatest public health crises are found in science and reason, not hot and paranoid politics.

I am a person of faith who tries, every day, with varying degrees of success, to be compassionate. So I voted for the candidate who went to Mass and then prayed at the graves of his dead children and wife on election day. I didn't vote for the guy who held a Bible upside down for a photo op in a churchyard where resting protesters were teargassed and driven violently away.

I am a person of small means, economically speaking. I voted for the candidate who grew up in a working class community and understands that struggle, not for the one born with the silver spoon.

I have friends and family members of all races. One of my closest friends is blind. I have so many friends in the LGBTQ+ community, and family members who are trans and gay. I have friends and former students who are Dreamers. I come from a family of immigrants. I couldn't vote for the candidate who denies the vulnerable protection and justice, who calls them criminals and thugs.

I am a writer and poet. I couldn't vote for the candidate who doesn't read, who doesn't love poetry and art and good music, who butchers language with hateful rhetoric. And who doesn't like dogs. So I voted for the guy who quotes Seamus Heaney, who has two big dogs, and who married an English teacher who isn't, thank goodness, a supermodel.

Elections have consequences. I like my chances with this guy.

Balloons, Breath, and Other Blessings

I blew up seven balloons today. Now, in comparison to your average birthday-party-throwing suburban mom, that's not much of an accomplishment. And to be honest, I have been working on building up my lung power for a few years now. But three Octobers ago, back in 2017, I didn't have enough wind in my lungs to make it up a few flights of stairs to my office, let alone blow up party balloons. I didn't know the reason at the time, but would discover a few weeks later that I had a trachea full of tumors—adenocarcinoma, to be exact. Lung cancer. Ugh. No wonder I couldn't catch my breath!

Fast forward to today, when as part of the Lungevity Foundation Breathe Deep Together event, I walked a little over three miles (which I now consider a short walk) with family and friends in honor of lung cancer patients, caregivers, researchers, doctors, and loved ones lost to the disease. When I was diagnosed with stage 4 disease in November of 2017, I wasn't certain I'd see the next November, but when 2018 rolled around, cutting edge targeted therapy had gotten me well enough that I was able to help co-organize and walk in that year's Breathe Deep Nashville event. I helped organize the 2019 event too, and walked, a bit more slowly however, having just finished a round of chemo that week.

This year we couldn't hold our regular community event due to the pandemic, but I'm grateful that my husband John, daughter Rachel, and friends Erica, Tara, and Ben could meet up to walk the course at Shelby Bottoms Greenway under an overcast October sky. Thankfully, the rain held off long enough for us get around the 5K loops. The annual event is usually a HUGE fundraiser for Lungevity, and this year's goal nationally is $500,000. I know it's not the best time to ask people for money, generally, but if you've got some extra jingle in your pockets and want to support the great work Lungevity does on behalf of folks like me (a living, breathing miracle of science), I encourage you to make a donation to my Lungevity fundraising team, The Litwits.

Oh, and there's also this to report: clear CT scans of chest, abdomen, and pelvis this past week. According to the best diagnostic machinery around these parts, that nasty ROS1+ adenocarcinoma is still sound asleep, snoring away somewhere deep in the cancer DNA. May the lorlatinib tyrosine kinase inhibitor keep on inhibiting! We'll scan again in December, adding in an MRI of the brain, so fingers crossed! Each day, each breath is a work of grace. And science. And I am ever grateful.

My Little Monster

The artist Joseph Mallord William Turner (1755-1851) was a gifted badass. Painter, printmaker, water-colourist, sketcher—he became a student at the prestigious Royal Academy in London when he was just fourteen. He got famous as an artist while he was still a young man, made tons of art and lots of money (with his art, yes, but also by investing in real estate and other schemes). He pissed off his rivals, had a couple of scandalous love affairs, traveled, and sketched, and painted, and traveled, and sketched, and painted some more, then died peacefully, asleep in his own bed. 

Turner was dubbed Prince of the Rocks for the dramatic, dynamic way he painted landscapes (and seascapes). He most certainly captured the sublime in his towering alpine cliffs, or in the towering ocean waves that seem to bound off the canvas. You can practically hear the ocean crashing into the rocks. I can get lost in his paintings for days.

Fishermen at Sea,  by JMW Turner

That's just what I did this past summer, when the Frist Art Museum here in Nashville finally re-opened for socially-distanced, masked patrons. The Turner exhibition had been held over from spring, with many pieces on loan from the Tate in London. I went to see the show twice, and each time I walked each of the galleries twice, doubling back to look again at a favorite, or just to marvel at something I hadn't seen—really seen—the first time through. Honestly, there could never be enough time to truly see everything in all those paintings. 

The exhibit included many famous works—endless mountains and waves, monumental oil paintings, sweet watercolors, open sketchbooks. It was overwhelming. But during both visits my mind fastened on an unfinished painting that looks more like a work of abstract expressionism than it does a Romantic seascape. The canvas is covered in an ethereal, swirling yellow; there's some pink, some grey-blue, some red and orange, and it's just, well, beautifully misty and sunny at once. 

JMW Turner's Sunrise with Sea Monsters

"Turner seems to paint with tinted steam, so evanescent and so airy," wrote his contemporary, John Constable (according to the curator's notes). 

And nowhere was that more evident than in Turner's Sunrise with Sea Monsters, with its yellow-pink-grey-blue-red-orange "tinted steam," and, at the bottom, some dark swirls just beginning to look like fish or whales. Or the face of an underwater dragon. 

No one seems to know for sure what Turner had planned for this canvas. I'm fine with not knowing. I like it the way it is. An unfinished canvas is so very human, a perpetual work in progress.

I also love this painting because, on any given day, who doesn't have some little monster tucked away in the bottom of their psyche? Some kind of worry or long-carried grief. Some obsession. 

Or some physical malady, perhaps, quiescent for now. 

Maybe, like...oh...I dunno...late stage cancer? Because when you live in Cancerland, sometimes even in the most escapist of Romantic painters, you still see the work through the lens of your cancer. Because once you have cancer, or even have had cancer, sometimes it's hard not to make everything a fucking metaphor for your fucking cancer. 

Like maybe you're floating your little boat in the night through the rocks of the Cancerland Sea, grieving yet another recent loss of a lovely friend to the disease, or even the death of an acquaintance, a cancer compadre you "knew" on Facebook (both of which happened in the last few weeks). And you're afraid, very afraid of your little dinghy being smashed to pieces, of the sharks circling. 

But then, you step into another painting, and just like that, it's morning. All around you there's light. The rocks and the monsters are still there, of course. But now so is this swirling, misty yellow-grey-pink-blue-red-orange light, wrapping you in a kind of benediction. Like every sunrise inviting you (and your little monster) toward it, through the rocks and mist, into another imperfect day of an unfinished life in your imperfect, dynamic body. And you are grateful.