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.

This Is Just To Say

They have taken 

the scans
that were in
my care plan

and which
I was certainly
dreading
for weeks now

But bless me
they were amazing
so clear
and so NED.


Thanks to physician-poet William Carlos Williams (pictured here) for creating Every Poetry Teacher's classroom dream prompt for the instruction of imagery. And thanks to my care team at Tennessee Oncology, and to cancer researchers everywhere doing REAL SCIENCE right now, even in a social climate currently hostile to it.

For those who don't know it, here's a link to the WCW poem that inspired mine: This Is Just to Say

And, for those readers who'd like to know more about Williams, here's a link to a  biography/appreciation I found in, of all places, the Annals of Thoracic Surgery, while I was rummaging around for this picture of the poet, which accompanies the article. While there are lots of biographies of Williams floating around out there, I chose to share this one, written by another physician-scientist, Dr. Richard Carter, and published in 1999. Williams was himself primarily a pediatrician and obstetrician, so I'm not certain why a journal dedicated to thoracic surgery published this article about him unless it was for a thoracic oncology patient-poet like me to find for encouragement and inspiration some decades down the road. Even after being incapacitated by multiple strokes, Williams kept writing.

And what I mean to say most of all, is that I have been given the very fine gift of MORE TIME to be here with y'all, for which I am ever grateful.

Compassionate Accessorizing

In early June I did the unthinkably daring (and possibly foolhardy) thing of driving from Nashville to the Hudson Valley to spend time with my family in New York—yes, as a cancer patient in the dangerous time of COVID.

The drive that used to be so routine became a germ-avoiding odyssey. I was so very careful getting here. I packed all my own food and drink for the trip. I wore a mask and gloves at rest-stops and gas stations and sanitized, sanitized, sanitized. I didn't buy even so much as a cup of coffee on the road, and slept in my tent on the ground in a lonesome, wooded campsite in Northern Virginia so as not to rest my head on a potentially germ-ridden bed in a hotel. (I'll do the same on the way home.)

And I've been rewarded with wonderful stays on our family farm tucked away in a remote corner of the Catskill Mountains, and at my sister's beautiful home near the Hudson River. I've taken long walks in the woods and gone biking along rail trails. There's been lots and lots of good food, good rest, gorgeous vistas, mountains and streams and rivers, and lots of time soaking up the groovy Hudson Valley-Catskill Mountains summertime vibe. I even made a quick trip across the border to see a friend in Massachusetts. And I've felt very safe the whole time.

The trip has been all about the mask and the hand sanitizer. And social distance. 

I've been masking up, sanitizing, and social distancing with some dedication ever since all pandemic hell broke loose back in March, but I think I do it now with even greater vigilance while moving about the country. Riding on the rail trail --- masked. Walking in the nature preserve --- masked. Going to the grocery or to get take-out --- masked. Like so many folks, I have a hand sanitizer pump bottle and some wipes in my car, and I carry one or two little bottles in my purse or pocket at all times.

The good thing is that nearly all of the people I've seen in most of the places I've been while here in the Northeast have been masked. Once I saw an unmasked woman enter a grocery store, and a staff person courteously reminded her she needed to wear a mask. The woman gasped, not at the fact that she had to wear a mask, but at the fact that she had forgotten hers in her car. She apologized, ran out to get her mask, came back a few moments later, and went about her business. 

But I know that's not the case everywhere. COVID infection and mortality rates are spiking again, especially in the South, including in my red state of Tennessee. The Florida and Texas numbers are especially shocking. And in these places, apparently, mask wearing is some kind of political statement. If you do it, suddenly you're a "nasty liberal" instead of a person with plain old common sense. 

When I lived in Japan in the early 1990s, I saw people wearing masks every single day on the trains, in schools and work places, on the streets, in the parks, and in the stores. I'd arrived during cold and flu season in late December, and the point of wearing the mask wasn't just to keep oneself from getting sick, but to prevent transmission of illnesses to others. As the flu season passed, fewer wore masks, but if someone had the sniffles, a cough, or a cold, and they happened to be out in public, they usually had a mask on. It was normal. It was sensible. It was considerate of other people. It was a healthy practice.

Many Americans, it seems, are not inclined to that sort of common sense or consideration. Nor do they care about public health. Instead, they'd rather have public meltdowns and temper tantrums when asked to wear masks.

The other day a friend texted me from Nashville to say that she had been at a Panera when an unmasked man came in and started haranguing the masked customers and workers, shouting about how wrong it was to wear a mask and screaming at everyone to stop wearing them. 

I've read reports and seen videos of other people doing these things, declaring they had "breathing problems" or that it was their individual right not to wear a mask and that local ordinances or store policies requiring it were violating their rights as Americans. And while I always try to exercise compassion in the face of stupidity, my supply for this kind of nonsense is really running low. I'm at the end of my patience, frankly. (So much for cancer making me a more compassionate and generous person!) 

I know, though, that, like toddlers, these adult public tantrummers are responding to the COVID crisis from a place of fear (primarily) and denial. They, like toddlers, cannot control the world around them, which triggers a fear response, which pisses them off into a downward spiral. They lose any ability to be compassionate or considerate.

People, COVID-19 is not a conspiracy of the "liberal media." It's a real disease, and it is pandemic. People are dying. YOUR life is at risk. And so is mine. Currently, we don't have a good treatment, a cure, or a vaccine. I have confidence that we will. But we don't have it right now.

Wearing of masks, social distancing, and good hand hygiene stop the spread of this disease. There's empirical, scientific evidence to support those claims. We need to do all those things until we 1) can treat it effectively, and/or 2) have a vaccine against it, and/or 3) can cure it, control it, or eradicate it completely. 

My nieces and I were talking the other day about how we can find all sorts of "cute masks" on Etsy, and how some companies are starting to make masks designed to be "more breathable" for workouts as "athletic attire" (though we declared these overpriced and recalled fondly the early DIY mask days of the pandemic). The point is, according to my very wise twenty-something nieces, those who malign masks and refuse to wear them are (besides jeopardizing everyone's health) missing out on a very good opportunity to accessorize. 

So sanitize those hands, social distance, and for goodness sake...mask up, y'all. Accessorize, accessorize, accessorize. And try, at least a tiny bit, to enjoy it.

A Raging Bore

A raging bore...which is better than being a raging boar...or boor.

Friends, my most recent CT scans have been deemed "unremarkable" in the language of medical reporting, and I couldn't be happier to be so dull.

The imaging machinery found no evidence of cancer from my neck on down into my pelvis. So. Eight weeks, and we roll again, next time with the brain, since my particular brand of cancer keeps wanting to throw parties up there, and we need to make sure no revelers are setting up for a rave.

But seriously, it feels impossibly silly to crow about my good news in the face of our current national meltdown, eh?

Despite the ill-effects on my mental health, like normal folks, I've been following the news, which recently has been way more important and way more interesting than my scans. But not interesting in a good way. As wonderful as things are inside my body, and as grateful as I am for that—for all the prayers answered and all the medical science that went into keeping me in good shape on the inside— things on the outside of my body are looking pretty grim. 

America, we have a problem. That problem is us.

We know the root cause of it, going back to the very first time a European brought an enslaved person from the continent of Africa to the Americas, believing humans could "own" one another. Or more precisely, that white people could "own" black people—and force them into labor to enrich white people. It was a fucked up idea then, and we continue to fuck up now when it comes to matters of race and justice.

Our country was founded with the evil of slavery already in place. And despite a war supposedly fought to end it, and laws written to bring all people justice and harmony, we are reminded every day that we still live in a country intensively and hatefully divided.

Unfortunately, much of the current leadership is not up to the task of bringing us together. Speaking of boors. The person whose job it is to lead—to be a model of citizenship, fairness, and good sense—sits tweeting madly on his throne about non-existent conspiracies. (Has anyone seen The Madness of King George? About King George III? Remember how that turned out for him?) We can expect nothing good from Washington.

Oh, and don't get me started on the ideological schism over who wears a mask and who doesn't? What is this...The Watchmen?

People, it's up to us. Up to us to call out racism in ourselves and when we see it in others. It's up to us to be kind and smart. It's up to us to stop racism, violence, injustice, coronavirus, a tanking economy, environmental devastation, general rudeness, and lots of other shitty things I've left off this list. Oh, and cancer. All. At. Once.

No wonder the country is having a meltdown. No wonder I am. See! A complete, raging bore.

So folks, this is all I've got: For God and Country, or just Country if you're an atheist (which is FINE by the way, no judgement here) mask up. We've got some voting to do.

On Boring Old Hair

My hair has grown back, almost a thick as it used to be. While I didn't lose it all to chemo and radiation, after my second infusion, and again after a second round of brain radiation last fall, my silver-white locks fell out in small handfuls, like passengers abandoning ship. The once-thick mane (of which I was quite vain) thinned and thinned, but never so much that it felt necessary to shave my head. I was thankful for the strands that hung in there. The texture changed, though; whenever I combed what was left, it felt brittle and fake, like cheap doll hair.

Lately, the pandemic has everyone up in arms about getting their hair cut. We've all been doing various degrees of quarantine for weeks and weeks; salons and barbershops have been shuttered. We've squabbled up and down about when and how to get them (and lots of other businesses) back open. I'll probably just cut my own hair until I am confident the COVID-19 risk is gone. So maybe it's just that the salon question has made me pay more attention to what's been going on with my own hair, but recently I've noticed it's grown below my shoulders again and looks and feels like mine, not like a plastic doll's. The other day, I braided it into a couple of convenient pigtails and went for a bike ride. So what? Right?

Yeah, not a big deal. Kind of ordinary. Kind of boring.

Except for the cancer. Except for the depth of gratitude I have, now, for boring.

I have scans coming up in a few days. I hope the results are equally boring.

Betwēonum

Between. The word comes into modern English from the Old English; be (meaning by) + twēonum (meaning two). Between two things. Between yes and no is maybe. Between red and yellow some orange.

We are between the beginning and (we hope, someday) the end of a pandemic, our lives suspended...by...what? The strings of our masks, maybe?

I am between scans, between cancer-free (inactive disease, at least) and possible recurrence (this disease comes back...we just don't know when), in a kind of dangling dance between jubilant and cautious – what I've taken to calling my "little life of living large." And right now, the world is with me on this. We're not making any plans.

I walk around the neighborhood, keeping a safe distance from other walkers (though I long to pet everyone's dogs!), and it seems that all the peonies elsewhere have been blooming for weeks. Wet flowers topple their stems after rain in every yard except mine. My pink peonies are still shy, balled up like big marbles, and just starting to show a little color. In this faint pushing forth, they are between bud and full bloom, with tiny ants busying themselves at the sepals' nectaries and standing sentry against other would-be invaders. Nice gig if you can get it.

I've been in a holding pattern with the peonies. I know better than to fret–or to dream–about the imaginary future. But I fret and dream anyway. The virus. A new front porch. Flamboyant flowers. Kayaks. Scans. Shortages. Hiking for miles and miles through another country's mountains. Stop. I'm not going anywhere.

Grief and loss are strewn about the planet like wreckage after a worldwide storm. Except we're not after. We're now. Which is another way of saying we're in between. Now is always in between. Here. In the muck and almost-bloom of it. Yes, I'm not going anywhere soon. I could get used to this.

A Li'l Ragey

Some of my friends reading this post might also see me posting on Facebook or Twitter. And they might have noticed that I've gotten a little less flowery and a little more ragey on my socials. Rage is maybe my least favorite emotion. It eats me all up inside, loses me friends, and gets me the silent treatment from family, who are obliged to love me anyway (in the case of my rages, from a bemused distance). Nevertheless, I have given rage some reign recently. A little gallop in the wind, so to speak. An airing of grievances.

But I worry this rage could be unhealthy, so I'm trying to not feed it things like fear and negativity, gloom and doom. Because we know that stuff is only gonna grow wild, and it doesn't take much for it to sprout into a whole toxic garden of hellacious thorns.

Still, there is the current reality. It is what it is, and considering that reality, you know this rage isn't unfounded or misplaced. If you're reading this, it's quite possible you feel it with me. But when I try to put my finger on the exact cause or source of my own rage, what comes back is the lame phrase "oh....just.....all of it!" And by "it" I mean all the noise that comes in the whirlwind of living in honest-to-goodness pandemic times. The inane policies. The creepy conspiracy theories. The admonishments to do and be better humans. The face-palm-worthy stupidities of leadership. The limits on where I can go and whom I can see. The current efforts to undermine our electoral processes. The failures in protecting our essential workers. The pasta shortages. For real. Pasta shortages. I can't even.

Oh, and cancer. Especially the fact that clinical trials, on which so many late stage patients depend for treatment, are stalled because of the pandemic. Access to other treatments and surgeries have been delayed as well. That sucks too.

And the senseless, needless deaths.

People, I'm trying to turn my rage into good, to harness it as creative and productive energy. I'm trying to keep out of trouble and out of jail (it's nearly impossible to get good cancer treatment when you're a felon). But some days containing that rage, even to a speedy canter, is hard. When I express it, stomping around the house, shouting about the latest absurd headlines, bemoaning the fate of the country, it doesn't change anything. Except my foul mood. I do feel better after a good stomp. So go ahead, darlings, stomp and shout. Embrace your inner toddler for ten minutes, or ten days. It's fine. 

People who love me advise again and again...avoid the news, avoid the socials. They'll just make you upset.

I don't want to be that ostrich.

So I'm gonna ride this rage and hope it doesn't buck me off. And I'm gonna being fuckin' grateful I'm alive to feel it.

Listicles from a Plague Year

Stay off Facebook, they say. Stop watching the news. Meditate. Do yoga. Use this time to X. Now is the time to try Y.

Here's a list of ten things you can do to fend off boredom, address your fears, organize your home, and be a better parent/human/pet-owner/sustainable-gardener/atheist/christian/buddhist/poet/ teacher/citizen/doer-of-anything/while-not-doing-anything during the pandemic.

Hey, List-makers!

I'm not bored. I have plenty to do. Plenty to think about.

And I'm not doing any of it. Hardly.

More than one well-intentioned person has pointed out to me that Shakespeare did some of his most remarkable writing during plague times. That's awesome for him. I'm socially-distance-walking around my neighborhood taking pictures of flowers and posting them on IG because that's about the extent of my mental and emotional bandwidth right now. Oh, and I'm also lecturing my FB friends on the importance of political engagement and voting. Really.

The woman who delivered groceries to my door today was at least ten years my senior. I'm 57. Let's get fucking politically engaged over that privileged cancer patient shit. How did my cancer somehow trump her seniority? Isn't she supposed to be getting groceries delivered to her, too? Damn.

Breathe. Be grateful for now. Live in this moment. Yes. Of course. I'm especially good at that. I have metastatic cancer. I'm grateful for every day I wake up. I know the future is imaginary.

Seems like lots of other people are registering that too. We can talk all we want about hope, about "after this." I do it all the time, as in "for my next treatment after this, I'll try X." But we don't really know, do we? Not really. Not ever. It just feels...more so not ever now. Weird, huh?

I still think, though, that most of us are going to be okay. Eventually. That's not a scientifically supported observation though, just a rough calculation of the human spirit left on the planet keeping it spinning. A lot of folks won't be okay though; that's true, too—I think especially of those directly traumatized by illness, and the first responders and medical folks who have had to deal with impossible circumstances. And the economic catastrophes everywhere. But somewhere, in the misty not ever...well, I don't really know. Maybe ask one of Macbeth's witches.

Beauty Anyway

It poured rain today, Easter Sunday, drenching everything here in Nashville into a soggy mess. In some places there were severe weather watches. Some of my friends up north still have snow. As far as I know, the Easter Sunday churches weren’t packed, because they weren’t supposed

to be open. Christians who celebrate Easter today and those who will be celebrating Orthodox Easter next week, like Jews recently celebrating Passover, are compelled to keep their observances at home.

And whether or not we individually subscribe to a religious observance right now, this time of year feels like a pivot point for lots of us, as we step for real into spring, new beginnings, stirred by pretty days. Still, right now especially, we’re all terribly...uncertain about what comes next.

Because it’s Easter, I can’t help but think about what historians believe life was like for the folks who eventually became Christians in the earliest times, in the last millenium’s first decades and centuries. For the most part, those folks were Jews (and some Gentiles and others) who had, according to the various stories circulating around the Mediterranean in those days, experienced and witnessed some remarkable things while hanging out with this weird carpenter turned radical rabbi/street preacher. Or if they hadn’t seen it with their own eyes, they’d heard the tales. Their own customs and religious practices as Jews had been suppressed and surveilled by the Romans. Their holiest temple had been destroyed, rebuilt, and then destroyed again. Many of their families had lived centuries as refugees far from their ancestral homelands, and some of them living in and around Jerusalem were themselves refugees from other territories. The local and imperial governments couldn’t agree on laws; currency markets were shaky, income inequality crushed the working people, xenophobia thrived, little wars were breaking out all over, and health care sucked. You can see why a street preacher, or even a story about a street preacher with an optimistic message might have gained some traction with that crowd.

That story isn’t one to which most Americans today subscribe, though. It doesn’t bring people comfort in the way it might have even just a few generations ago, and there are lots of good reasons for that, which I won’t get into here. Let’s just say the cruelties inflicted on others in the name of that radical rabbi/street preacher have pretty much discredited most institutions trying to stake a claim on his story.

And yet some people have faith. It might not be a religious faith, but they believe in goodness.

They believe in beauty. They believe in the power of a seed to germinate into something beautiful, something edible, something tall and shady, something wild. And now, now is the time for sowing, friends. Get your beauty planted, people; we’re going to need it in the coming days.

Humans crave beauty. It’s one of the reasons I take so many pictures of flowers. It’s why we paint, or sing, or write poems, or dance. Beauty is its own life force. I think that’s one reason so many cancer patients turn to art when they fall ill, when they are dying. In the ugliness of illness, in the destruction of our bodily temples, we reach for good, and we long for beauty.

It’s my third Easter since diagnosis; my third year of snapping pictures of blooms, of dealing with pollen allergies. It’s my first living with threat of coronavirus. I can’t see far enough into the future to know how that one is going to end, so I’m going to try doing what has worked for me in dealing with cancer. Train my eye on the beautiful and pull it in. That doesn’t mean I’m not acknowledging or caring for the things that are not beautiful; I live with a hideous disease deep inside my body and see awfulness in my community every day. It’s grim stuff and it needs fixing. But that doesn’t mean that we can’t have beauty anyway.

Buzzed

In the past week on my social media accounts, I have added my voice to the shrill, to the complaining and impatient, to the fearful. We're all sounding the same notes. Yes, I'm a little afraid. I'm anxious. Like all y'all, I've been a bit cooped up in the days of COVID-19 and spring rains. We're also fretful about the well-being of the good folks we know who work in healthcare. All the very good advice out there on how to deal with isolation, summon equanimity, to live in the reality of pandemic times is, after all just, advice.

Yoga practice. Check. Going for walks. Check. Washing hands and staying home (except for solitary walks and the very occasional grocery forage), yes and yes. I'm catching up on reading, on those little projects around the house, etc., etc.

As a cancer patient, I've had some experience with social distance, keeping a low profile after infusion chemo, and I'd be lying if I didn't say that I kind of love it, at least without the infusion chemo part. It looks good on me. But I know it's awful for others who have lost work, who have had to adjust to working at home, who have to suddenly become school teachers to their kids AND figure out their economic lives. I know I'm fortunate to be able to work from home and not to have to worry about the educational well-being of little ones.

I'm not bored. Even scaled down and closed inside the four walls of my bungalow, my life manages to be over full and pretty content.

But there's a buzz I can't tune out. It's that conversation we're being forced to have, the one about who gets access to which resources. Who gets tested and who doesn't? Who gets treatment, and who doesn't? You've read and heard how the elderly, the "infirm", those with cancer or other serious illnesses find themselves among the unchosen, in respiratory failure and left to die so that those with more "prospects," the younger, the more "fit," get access to one of the too-few machines that could save a person's life. That buzz is so loud. It's a conversation too about the failure of policy, of the current administration's inability to understand and apply basic science in shaping a national response to our current circumstances. There's a recklessness in how the people in charge communicate, and an insidious divisiveness that spells out doom. I hear it even inside the brick and plaster walls of my cozy little house. It gets louder and louder and louder.

My health is good AND I have metastatic disease. I can say those things together because my last scans showed that I have no active cancer in my body, and I have no other acute illness at the moment. But my health is also fragile. Because my body is busy trying to keep the cancer suppressed with the help of daily oral chemo, and because I've undergone more aggressive treatment with chemo and radiation, I know my immune system is maybe not in tip-top shape. So, yes, I'm being super careful, and as I said before, mostly staying home.

NED. Clean scans. And I just had a birthday, my third since a Stage IV cancer diagnosis had me believing I might not last the year. My oncology team and I have worked hard to get me here. My health insurance has shelled out an awful lot of dough to keep me alive. While I love irony in a good book and appreciate satire in a late night monologue, I don't want to be the main character in a narrative that has me dying from the opportunistic infection of a little virus after pushing back a metastatic disease. I'm doing my part to stay safe. I just hope everyone else is too. Because that is all I've got.

My Very Own Three-Card Monte

I grew up about a hundred miles north of NYC, in a mostly rural area dotted with small towns. When I was a kid, my family would make regular trips into "the city" for various things, mostly entertainments like Broadway shows, baseball games, and museums. Later, when I was a ne’er-do-well teenager,  I spent time in the city hanging out with friends — going to clubs, shopping the thrift stores, rummaging used book and record shops, copping a little weed (or something stronger), or just wandering around the streets to check out the action. Always, always, always in the 70s and 80s there were con men (and a few women) running street games of Three-Card Monte. They'd set up their quick-folding tables where the flow of pedestrian traffic brought plenty of suckers their way.

The players’ banter and jibes and the quickness of the easy game captivated passersby. It was a little thrilling, all the hustle. We didn't have street cons like that where I came from. The crowd would look on, always convinced we could track the money card (or the shell covering the pea) with our eyes. Sometimes we could. Sometimes we couldn't. The point was to make us BELIEVE we could win this oh-so-simple game, to get us to lay our money down based on that confidence. Of course it wouldn't have mattered what we'd tracked with our eyes, because sleight-of-hand always made sure the operator (who could disappear into the crowd as fast as his table clicked closed) was the real winner. My friends and I played only vicariously, not eager to part with our hard-earned restaurant tip money, but we watched lots of other folks lose their dough, and often their cool.

Now, I feel a little like I'm living in a Three-Card-Monte kind of world, in reverse. I don't want to find this particular money card, or this pea under the shell, not if it's coronavirus.

Here are the corona-con's distractions: Some people might be naturally immune. Some people might have acquired immunity already by having had a case, even a mild one, of COVID-19. Some people have symptoms. Some people have none.

But we can't tell who has immunity, who has a mild case, or who might be a carrier just by looking at them. With all the cards moving so fast, we can't track the money card; we can't guess what's under which shell. Testing is still not ubiquitous, and until it is, we won't have good counts on the number of cases and who has what, where or when.

We're told the elderly and the immunocompromised (hello...I'm sitting right here!) are most at risk. It's accepted. It's medical science. The numbers so far don't lie. Here's the creepy thing: we're lots more okay with the notion that the old and sick are more likely to die than we would be if children and infants were particularly vulnerable and we suspected that their parents could be the carriers. The calls for lockdowns would be taken much more seriously if children and babies were in jeopardy, and fewer people would be calling this latest pandemic a hoax. Thank goodness it appears that children aren't as much at risk, and thank goodness schools are closing so we don't have to test that theory. Too bad so many people are really in need of lessons on public health and herd immunity.

But really it's quite simple. Chances are you know and love someone old, someone sick, someone with cancer. Chances are you love someone, period. I really, really hope someone loves you. Chances are you have friends, or, at least, a pet fish who needs you alive and well. And chances are you could be a coronavirus carrier. You might get COVID-19. You might not. But you could give it to someone else who really doesn't need it. Or you could get it and be too sick to take care of your pet fish.

Let's not suddenly fall in love with Natural Selection and Survival of the Fittest. Be your best compassionate, human, thinking self, and do the right thing.

I'm not asking you to panic. I'm just asking you not to fall for the short con. You think you're tracking the money card, but the house always wins.

Love your neighbor (or immunocompromised Auntie). From a distance. Keep calm. Wash your hands. Stay home if you can. When you do go to the store, leave some bread, milk, and toilet paper for the rest of us. Thanks!

P.S. On top of trying not to catch the coronavirus, I have scans this week, so ya know, no stress. My rad onc's office called and said to go ahead and get my CT and MRI as scheduled, but that if I wanted to get my results by phone instead of coming into the clinic, the doctor would be glad to call me. That's the prudent thing to do of course. I adore my rad onc and hate to give up a chance to say hello in person. Still, in the interest of public health, it's probably best to circulate outside the home as little as possible. Here's hoping her phone call brings good news.

AND...WE'RE...

 

That's what the doctor and the NP said about my most recent CT scans. In other words, we've got continued clear scans two months out from combo chemo, no evidence of disease in the chest, abdomen, or pelvis. In other words, as far as we know, our crapshoot of going with a combination oral/infusion treatment for which there is no actual protocol nor much research data has worked to push cancer far enough back into my molecular being that it is undetectable by any tests, at least from the neck down. We'll find out what's happening in the brain with scans in March, but things seem to be okay up there so far (no symptoms). Of course we won't call this response to treatment a "cure" because the disease is metastatic, and there's a good possibility of recurrence, but it doesn't hurt a girl to wish that if the cancer cells decide to mutate again, it will be into something harmless.

Gratitude, gratitude, gratitude for all the prayers, good wishes, and adorable animal videos. I love science and the people who practice it (thanks docs, nurses, techs, researchers, acupuncture, massage, yoga, and Al). I love faith and the people who have it (and those who don't). I love my family and friends for walking through this minefield with me, carrying me when necessary, unasked, because that's just what they do and how they are made.

In the meantime, I'm back on a full dose of lorlatinib (oral chemo), which means: neuropathy in my hands, sludge in my brain, and uncontrolled weight gain (again). So if I seem a little aphasic in conversation as I try to find words, if I'm horribly forgetful and tell you the same story again and again, or don't show for an appointment, and if I seem to be suddenly QUITE LARGE since the last you saw me, it's the lorlatinib folks. Hey, it's that or letting the cancer run rampant. I'll take a little forgetful roly-poly any day over that.

With further grace, a continued period of stability will allow me to do a few things I've been looking forward to: 1) spending time with my far-flung peeps, 2) leaving the country a few times in the coming election year to get a break from the current White House administration's corrupt abuse of people like me and those I love 3) advocating for others with lung cancer 4) writing about the interesting folks I get to meet along the way. 

We. Are. Good.

And profoundly grateful.

You Can Call Him Al

Today I met Al. Al is the guy who calls me up every six to twelve weeks or so to remind me of the scan appointments I have for the next day. He is always so pleasant on the phone, and his voice is just beautiful – musical and full of laughter, with just a bit of an accented lilt that sounds like the Caribbean. When he calls, we end up having these interesting micro-conversations (he can't talk for long, of course, with that huge list of oncology patients he has to call) about things like the best place to get breakfast after scans, or astrology (we have close birthdays), or what we'd do if it quit raining outside and how it rains differently in different parts of town. He makes his calls from an interior office at the imaging place, so since he's not at the front desk and he's not a tech, I never see him.

Until today! Our paths crossed in the hallway, and I heard his unmistakable, beautiful voice. "Hello Ms. LaChance, good morning! How are you?" "You're him! You're my guy! You're Al!" Turns out he'd heard me in the hall and popped out to say hello, as he sometimes does with his regulars. For me it was kind of like meeting a rock star. The Nice Man on the Phone. I mean, in a world where much appointment reminding is automated, it's kind of cool to be buddies with The Nice Man on the Phone. Seeing him and the lovely techs reminds me of how grateful I am for the work they do. Even on the busiest clinic days, these folks are professional, gracious, and well, just sweetly human while being rock stars in their own way, and I am honored to know them and to be cared for by each of them, including Al.

More scan news tomorrow. Stay tuned.

Cartographies and Cancer

I love maps. I love how each offers the cartographer's idiosyncratic vision of a place. We can map pretty much anything. Houses on a historic walking tour. Stars in the winter sky. The way from The Shire to Mordor and back again. Maps are imaginings of space, stories told or poetry made with lines and dots, numbers, esoteric symbols, and legends. We can't resist tracing them, moving our imagined selves across that imagined space with our fingertips. The map you see here, one of my favorites, traces the meander of the Mississippi River between Cape Girardeau, Missouri and Donaldsonville, Louisiana, showing how its course shifted (and implicitly is still shifting as I write) through the millennia. I'm captivated by the ribbons of pink and deeper pink, by the blues and greens curving and arching in great horseshoes through the Mississippi's capillaire Delta in a sensual visual rhythm. It’s a plotted design that looks abstract from a distance. The map here is a portion of a much larger iconic map that lots of other folks I know love too. In fact, poet and friend Heather Dobbins used it in the cover design for her book River Mouth. On seeing the map hanging in my dining room, another dear friend, Rebel Reavis, suddenly recalled that Donaldsonville was where her parents had met for the first time. Pretty much anyone who comes to my house finds themselves drawn to the map and remarks on it. That bit of cartographical magic has resonance, I tell you!

We take way-finding mostly for granted now, thanks to GPS. But we can imagine what it's like to travel in unfamiliar places without any map at all. How would we get where we wanted to go? All along the route we'd have choices to make, to go left or right, to go uphill or around the bend, to take the road more or less traveled, to move forward or stay put. Or go back. And we’d ask directions of people who know their part of the path, but not necessarily the whole route. Would we be lost? Maybe a little frustrated? Maybe, sometimes, very afraid?

In Advanced Cancerland there is no map. We might say things like "mapping the cancer genome" and declare it will lead to a cure. That's partly true. Though the cancer genome does not comprise the entire strange continent of this illness, it is at least a highly influential principality. But as far as navigating the whole landscape, from diagnosis to cure or, ugh, death, well, we're making that map as we go – testing blood and tumor tissue to find a treatment path, scanning, making new treatment choices when others fail and few or none of the options are all that good, taking direction from physicians and researchers who know their part of the route, but not the whole way there.

Sometimes the journey feels more like a game of Chutes & Ladders. We spin the dial, go a few spaces, get a chance to ascend the rungs, only to find ourselves on the next turn sliding back to where we'd begun.

Things in my part of Cancerland are actually going well at the moment. Just before Christmas I got the happy news that my particular brand of cancer looks like it’s going into remission in response to infusion chemo and radiation. So that was a great Christmas gift! I am grateful to my awesome team at Tennessee Oncology-Sarah Cannon Center – my oncologist Dr. Melissa Johnson, N.P. Lauren Welch, Dr. Casey Chollet-Lipscomb my radiation oncologist, and all the nurses and techs who helped me get through these latest treatments. I am of course profoundly grateful for all my family and friends who loved and took care of me, cooking, cleaning, etc., and to those who sent good vibes and put my name in their prayers. This remission allowed me to untether from the infusion clinic and to have a really good holiday with people I love, which is something I never want to take for granted again.

Of course we have no idea how long the remission will last. For now, I’m back on a full dose of the oral chemo, lorlatinib, in hopes that it will keep the disease in check. And we have a plan in place for if it doesn’t, another clinical trial, the next turn up ahead on the treatment path. But I won’t say lots about that right now, because if all goes well and the remission remains stable, I won’t need a new treatment plan for good long while.

I know how fortunate I am to be here in Remissionhaven for a second time. Many people with cancer never get here, and many who arrive don’t get to stay, as I well know. In the past couple of months, I’ve lost two dear friends, one to ovarian cancer and one to breast cancer, both of whom had experienced remission and subsequent recurrence. Their recent deaths are part of the reason I didn’t crow about my latest remission as I did the first time it happened. Grief and fear.

When you have a rare cancer best treated with cutting-edge medicines and you’ve reached that edge, everything begins to feel a little...improvisational, a little fluid. There is no cure, yet. Treatments are a kind of Hail Mary guesswork.  From where you stand now, you figure you’ll have this disease for the rest of your life, and there is no map for a way forward, only imaginings. Maybe the cartography of a life with metastatic cancer could look something like the Mississippi’s meander, looping over itself, finding a way, shifting over time, lots and lots of time, flowing and flowing.