I Saw the Figure Five

I Saw the Figure 5 in Gold by Charles Demuth

When we think of things that come in fives, a quick list off the top of the head might look a little like this: five senses, five tastes, five arms on a starfish, 5=the atomic number of boron, five fingers/toes per hand/foot, five faces of Shiva, five wounds of Christ, five joys of Mary, five Pillars of Islam, five books of the Torah, five elements, Chanel No.5, five golden rings. We know the number 5 is freighted with symbolism across cultures, and it figures somehow in nearly every discipline from alchemy to zoology. 

It also figures in cancer statistics. Five years is one of the magic numbers by which we measure the prospective fatality or survivability of a particular cancer. Some cancer treatments have better outcomes than others, and some cancers are so slow growing, no treatment is ever needed, which makes the cancer "survivable" beyond the five or ten-year benchmarks of living we use to measure such things.

When I was diagnosed with lung cancer, the five-year survival rate for someone with metastatic disease (like me) was about 5%. Meaning that out of 100 people with metastatic lung cancer, after five years, only five of us would be left standing. That was five years ago, and the reality of that statistic was made manifest in several of my online lung cancer communities where new fatalities were announced almost every other day. Today, the five-year survival rate is 8%, so we've moved the needle perhaps with a little bit with research and better treatment (I'll save my pitch for why you should support lung cancer research for my next post!). 

I think the odds of surviving this killer disease make me a bit of an outlier. Better yet, I'm gonna call my situation miraculous AF, because I believe in that stuff, and believe that science qualifies as miraculous. So here I am honoring the five years that have passed since the day I heard "You have advanced adenocarcinoma, a lung cancer." In that time I have lost three sweet friends to breast and ovarian cancer, and many many newfound friends who share my diagnosis to lung cancer. My mother also has been dealing with an early stage lung cancer diagnosis and some complications from surgery to treat that, and my youngest sister, Michele, was diagnosed recently with an early stage breast cancer for which she had surgery and will do follow-up radiation in the coming weeks. Cancer everywhere it seems, some days.

(An interesting side note here about my sister's situation...after mom was diagnosed with lung cancer, Michele tried to arrange a low-dose lung cancer CT screening for herself, given that two family members had lung cancer. The only other risk factor she had was long-term exposure to second-hand cigarette smoke, and her insurance denied the low-dose CT. However, in following protocol after a mammogram/biopsy diagnosis of breast cancer, she was granted a REGULAR CT scan, which did pick up some teensy tiny nodules in her lungs, not big enough to biopsy, but alarming enough for her medical team to declare she needed regular scan surveillance for both breast AND lung cancer. As we both say, everyone wants to save the ta-tas, so we screen and screen and screen every year, but the lungs...not so much. Sure...if you have breasts you can get breast cancer and if you have lungs...? Crickets.)

But despite the many difficulties of life in Cancerland (and Cancerland during a pandemic!), I've also traveled around the U.S. and overseas. I've gone to concerts, plays, and movies. I've hiked and camped and kayaked and biked, and I walked through some of the most beautiful parts of France and Spain. I've written LOTS of words, learned LOTS about lung cancer, and have met some of the most interesting, kindest, smartest people from around the world by doing all the things I got to do. So yeah, there have been some challenges, but many many many gifts.

Currently, my disease is not active. I've had other health problems this year, from COVID to some serious internal medicine-type-not-cancer issues, and so far, we don't see any sign that the cancer is stirring. Of course with each (all too frequent) report of a treatment failing or a fellow lung cancer patient struggling or dying, the day darkens with dread. We don't talk so much about cure for those of us with metastatic disease, but of managing the disease, keeping it in check so that maybe something else less awful and painful will end us. And until then, we keep the time best we can, making, working, resting, loving, traveling, celebrating, and recently...voting!

Bigger than the disease are the hearts of those who help me live with it day by gifted day—family, friends, medical teams, foundations, research and patient advocates, lung cancer community pals, creatives in the arts community, so many folk in my spiritual community (especially elders). They all look out for my well-being and give me hope that I'll still be writing and grateful five years from now.

It Pours

Partridge Pea

The day before Mother's Day this past May, my mom took a tumble while fetching the mail and face-planted at the end of her driveway. After being set back up on her feet by two passing Good Samaritans, she was rushed to the local ER by my niece, where the staff stitched up a few gashes and put what turned out to be a slightly broken hand in a soft cast. Just to be on the safe side, they took a few CT images of her head and neck, which were both okay. But...the images picked up an incidental finding: a mass in the upper lobe of her right lung. A fews weeks and a few more images later, plus a meeting with the doc, and we had a diagnosis—early stage lung cancer.

How about that? Now it's a family affair. Mom and I are lung cancer twinsies, sorta. Since Mom's fateful fall A LOT has happened. There was a big thoracic surgery to get the tumors out. There was a miserable hospital stay. There were my feeble attempts to look after Mom during that hospital stay. There was also, on the very the day Mom and I left for said hospital stay, the breaking of my husband's foot (which four weeks later we learned was not really a break, but probably a bad sprain, and that he'd just spent four weeks in a boot because an old fracture was mistaken for a new one). 

See that tiny fracture on the right
metatarsal? It happened about
60 years ago.

After spending most of July in New York with Mom, we drove back to Nashville with my husband sharing the backseat with our dogs and keeping his foot elevated on the folded-down front passenger seat (bless you Subaru for that design!). I should mention here that we'd toted our bicycles all the way to New York to ride our beloved rail trails and never used them once. So we toted them all the way home again, where they've spent most of the summer resting in the basement next to our similarly retired kayaks.

But in the meantime Mom is doing great! She's killin' it in her physical therapy! Her oxygen saturation level is steadily climbing. She's got a sassy new haircut and looks fabulous! Yay, Mom!

Mom getting ready for PT in the pool!

And THEN, sister calls me one 5:30 a.m. to report she and Mom are at the ER and things look dire! And they are! Kinda. It's a very dangerous pulmonary embolism. Mom is admitted and put on blood thinners. Eventually she goes home, still on blood thinners. Sister and Mom go to the onc, who has the findings from genomic testing, which say Mom's cancer is positive, get this, for the EGFR driver mutation!!!! Okay so it's not ROS1, like me, so we're not total cancer twinsies, but wow, right? The good news is that there is a very good targeted therapy called Tagrisso for EGFR+ cancer, so Mom and her onc are looking into that possibility for keeping her cancer in check.

But wait, that's not ALL! Shortly after we get Mom's PE under control, we learn another member of our close-knit nuclear family MIGHT BE FACING A SCARY CANCER DIAGNOSIS! I'm not going to say more about that yet because there are still too many questions around it, but I'll definitely keep you posted. What the hell?! 

Last thing, I promise. And this is especially for anyone who was kind enough to come to or tune into a poetry reading I gave last week. Yeah, that one, from which I beat a hasty retreat just as I started to read my last poem. That was me having a projectile vomiting incident. Uh huh. First time in public though (at least without alcohol involvement, lol!). TMI, I know. Sorry. It was horrible, gross, mortifying, and also, well, a little bit hilarious. But this thing with my poor digestion has happened enough over the past year, and quite intensively in the past week, so often that I was persuaded at least to pursue a diagnosis other than reflux. Heck, I even visited the ER myself and spent a few days in hospital so the doctors could poke around and come up with a few imaginative possibilities. And apparently, there are a few more unpleasant diagnostic procedures in my future.

All of this is to say, I'm good. No, really, very very good. Lots to be grateful for, many things going well. I'm just ... a little busy.

A Ladybeetle on Milkweed

P.S. I'm taking a seven-month long course to become a certified Tennessee Naturalist. I will, therefore, be decorating all my blog posts with random things I see on my walks. Hence the Ladybeetle and the Partridge Pea above. My aim in learning this curriculum is to eventually be useful as a Naturalist-Poet-Educator-Yogi. See, even with Stage 4 cancer, ya gotta have goals. 

P.P.S. This sculpture sat in front of the hospital where my mom had her thoracic surgery. I took this photo because I thought the sculpture was being ironic. "Heal" or maybe "Hale" if we read in rows down. Ha. The more time I spent with my absolutely exhausted mom in the hospital, where she was constantly sleep-deprived due to all the poking and prodding at all hours, and where she was fed unappetizing, tasteless food completely incompatible with what was happening in her body, convinced me that today's medicine overlooks the obvious in favor of protocols set by bureaucrats who have never themselves been patients. The two most important needs for healing, rest and healthful foods, are not ever provided by hospitals. I'm sure there are studies on this, but seriously, how is a person supposed to get well in one of these places?! Things have got to change!

Not a Gardener & No Scans

I'm not a gardener, but I do garden. Having a garden, for me, is not so much an exercise in futility as it
is in benign neglect. I put some seeds/plants in the ground, water them, try to keep the weeds down, toss my hands up at the first sign of blight, and mostly let the plants manage on their own. We end up with some pails of cherry tomatoes and basil for pesto and enough fresh herbs to keep our summer fare savory. Husband complains how, after paying for all the stuff one needs for a little urban container garden, our Sweet 100s are the most expensive tomatoes in town. But we eat them in caprese salads all summer long.

Here's the remarkable thing. I'm here another year to watch my peonies unfold. Soon I'll get to see the hydrangeas cheer on the yard with their pink and periwinkle and white pom-poms. Again. So I sing a little song as I dig around in the dirt:"You can't always get what you plant/You can't always get what you plant/But if you try some time/You just might find/you get what you seed...yeah yeah...you get what you seed.

And just like that April is over. It has been a BIG month involving a BIG and beautiful shift in my reality that, at the moment, I am not ready to share publicly. But it's a really really really good change, miraculous even, and it has nothing to do with cancer. I hope to be able to write about it here, or in some other way sometime soon, but right now, I'm sitting with my new reality in a quiet all-to-myself kind of joy, which feels like the right way to be just now.

That said, I also don't have any cancer news to report about myself, anyway. I had to reschedule scans, which were supposed to happen this past week, but didn't, because I came down with a nasty bout of covid. That was no damn fun. Thankfully, the antiviral has worked pretty well, and I made a pretty quick recovery except for a lingering cough, a constant low grade headache, and fatigue. Husband got it too and is recovering. Each day is better than the one before.

So, stay tuned for May, for news of those upcoming scans, and a bit of news on the cancer advocacy side of things. The ROS1ders have some things brewing for the coming months, and it's gonna be GREAT!

Thank you for your continued love, prayers, and support. 

Just January

January lays me out. In Nashville we get a few bright days, but mostly the skies are overcast, and darkness still comes too early for me. We do too much sitting and looking at screens. It's too cold to do much outdoors. And the sedentariness has been made worse with omicron COVID tearing through town, so that I avoid my usual indoor haunts, like the gym and the stupidly crowded nightclubs. But I still somehow talked myself into getting on an airplane to go a-visiting. I know, I know...there is all kinds of denial happening in that choice. But I had to go. To shake the drearies. So, I dashed off for a few sunny days in Tucson with friends Claudia & Bruce, then high-tailed it to the sunny (and cold, but still warmer than Nashville) arid cusp of the High Sierra in Reno to visit sister Amy, leaving John to tend the dogs and other household doings. I've managed to get some little bit of work done on cancer-advocacy projects, about which I'll say more when the things are actually finished and up and running. 

So, not much news at the moment, other than to say sometimes one needs a break from the dullness of winter, though I'd hate to admit my snowbirdism when I already, technically, live in the American South! February is nigh, with a Nashville spring not far behind. This week I'm back to work in a busier way, grateful for this hiatus which took me to a rock/gem show (outdoors under tents) in Tucson and along the Truckee River in Reno. I'm still floating on December's good scan news, and keep thoughts of April scans pushed back in the darker crevices of thought so as to stay focused on these happy bright days in the west.

Tucson Rocks & Gems

Truckee River Looking West

I've Been Trying to Write This

A lot of cancer patient support these days takes place online, especially for people with rare cancers who are few and far-flung. So patients "meet" in Facebook groups, or on Zoom; they share stories, give each other advice about treatment, carry on research advocacy and fundraising together, participate in awareness campaigns. It’s so incredibly helpful and hopeful to communicate with and be a part of this diverse group of people living with cancer. But it also breaks your heart.

Because someone you “know” from a forum online, say someone in complete remission, is no longer so. Another whose tumors were stable, you learn, now has tumors that are growing. Someone who was improving is suddenly in hospice. You're sitting around waiting for your next scans and someone else you "know" has scans that are "mixed results" or "bad news." Someone else who was "cancer famous," a well-known beloved patient advocate, dies. 

None of it is actually all that sudden. You know it's coming; you follow the blog posts, the tweets, the FB posts, all less frequent as the person you "know" moves closer to the end of life, and then the post is in a different voice altogether, the loved one sharing the obituary. The losses come heavy and fast in Cancerland; the disease is relentless, indiscriminate, unforgiving. You are gutted. And.

With each loss, each setback in another patient, you feel that thin hot wire of dread wrap itself a bit more tightly around your heart. You taste the gall of loss (even though you only “knew” them online!) and find yourself increasingly triggered by phrases like ¨she ran out of options,¨ or ¨she ran out of time.¨ You wonder what your next scans will bring. You wonder if you’re somehow squandering this gift of life, however temporary, on fears and complaints instead of serving others well, instead of finding your true path. The days and nights feel always a little—and sometimes a lot—fretful. Or just plain sorrowful.

Frankly, it’s not a great way to go through life. In fact, off the top of your head you can think of about a billion ways of living that are better and way more fun. But there are also much worse circumstances one could be in, worse illnesses even, yes, worse than cancer and way more debilitating.

Anyway, it’s the life you’ve got. Carcinomie life. So you do your best to shape each day into a lumpy, grateful prayer, even in the face of this thief of joy. You think of the future in terms of months, weeks, days. Years are an abstraction. You make plans because you refuse to let the thief in. You keep your courage up and go about your day-to-day, trying to get it all in. Trying to help. Trying to do a little something in the time left. You aim to be cheerful, to act like a decent human even though you’re angry at these ravages and your heart is breaking every day.

And then you look up and it’s nearly Christmas, time for your own scans. And you hope on hope that you get exactly the same gift you received the year before, clear scans, good health, and the chance to make some plans for the New Year. You know you don’t deserve it, that people much better than you, smarter, harder working, parents of young children, grandparents, gifted artists and scientists, you name it…that cancer, especially lung cancer, has stolen them away too soon. 

Then, your radiation oncologist comes bursting into the room before the nurse has even finished vitals and you can see her smile, even under her COVID mask, and you know. This year, you get to pass Go. In fact, this morning you found $150 stashed deep in the pocket of an old purse, but didn’t want to take it as a sign because that felt wrong. Anyway, you’ve had more good fortune. You don’t deserve it. But no one deserves lung cancer either. So you do what you always do, what you always did at the end of each academic semester when you used to be a professor and the wheels had come off on your teaching and student failures felt personal. You resolve to do better. To be better. Or at least to pay more attention to each day and to find what is holy in it, to be grateful for that gift. It doesn’t feel like enough. It never does.

 

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.

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

 

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.

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.

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.

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.

Hope, etc.

Even though nonprofit fundraising is not my strength, I'm pretty darn happy with the results from our Nashville Breathe Deep event for the Lungevity Foundation on October 19. We had a beautiful

autumn morning, and over two hundred people came out to Shelby Park for our walk/run to raise awareness about lung cancer and funding for lung cancer research. Family, friends, and the wonderful docs, nurses, and techs from Tennessee Oncology/Sarah Cannon Center and Vanderbilt Ingram Cancer Center made the morning a huge success, with everyone together raising over $43,000, more than our original goal! Guess that means we raise the bar for next year! We're also grateful to all the kind folks who made donations online, even if they couldn't make it out to the event.

I'm especially proud of Erica Changas Collins, Tara Watson, Robert Pirtle, their families, and mine, who go all out in organizing this event; I'm honored to be on the committee with them. I also got to see my wonderful colleagues from Volunteer State Community College, who founded our event team, The Litwits, last year. And, my lovely pals from The University of Tennessee at Martin boarded a bus at 4 a.m. with a group of Honors Programs University Scholars in order to volunteer at 7 a.m. and run at 8 a.m.! They win the prize for getting up the earliest and traveling the farthest! Here's a link to our GREAT photo album!

Next up is Lung Cancer Awareness Month, November. I'll be turning my fundraising attentions to another favorite project, the GO2 Foundation for Lung Cancer ROS1der Global Initiative.  This project seeks to raise $500,000 toward research into the very rare ROS1 gene fusion, an acquired mutation that happens to be driving my particular type of cancer. About 1-2% of lung cancer patients are ROS1 positive, and we are active participants in research we hope will make a real difference in the future of lung cancer treatment. So, if you didn't have a chance to donate to Breathe Deep and are looking for an end-of-year tax credit or some such thing, check out the link in this paragraph!

Last year I worked with some friends to organize a really beautiful fundraising dinner for this ROS1 project. But this year, I'm really worn out from chemo and radiation (I just had three more spots in my brain treated today; I'll write more on that another time), so I haven't been motivated to organize anything yet. Plus, I'm not so much enjoying food these days, so a fancy dinner gala is not in the cards this year. If you have any ideas for a ROS1 fundraiser I can do from the couch, let me know! I'd love to meet my goal of $10,000 by the end of November.

Here are a few of my favorite pictures from the Breathe Deep event.

Poet and photographer Darren Rankins snaps some pics
of people taking pics

Rachel leads pre-race yoga warm-up

Kids warming up with Rachel

Golden Laurels (UTM Students)

Start line

I'm looking forward to next year's Breathe Deep!

Marie and Maeve: The Further Adventures of Gamma Girl

In our last episode of Sojourn & Stardust, Gamma Girl (of the ROS1der franchise) was happily recovering from a series of radiation treatments aimed at stopping the growth of one Li'l Lung Cancer Spot in a retroperitoneal lymph node. And indeed, a subsequent CT scan of that area at the end of July revealed that the treatment seems to have been successful; Li'l Spot is shrinking. So hurrah for modern science, hurrah for a fabulous radiation oncologist, and thank heavens for more grace.

But, just to be on the safe side, doctors also had the MRI machine look inside Gamma Girl's glistening brain on the off chance...well...yup, there they were, four more li'l spots, measured in millimeters, decorating both grey and white matter. Might their recent appearance have to do with the fact that initial treatment of the lymph node was so long delayed? Might their metastatic origins have been in said node? No one can say for sure, but one might have one's theories.

What to do? More radiation.When? Next week. 

The fabulous folks at the Sarah Cannon Center are gonna get all Marie Curie up in la cabeza loca.

I've actually been thinking a lot about Marie Curie in the past few weeks. Discoverer of two elements, radium and polonium, she won two Nobel Prizes, one in physics (which she shared with her physicist husband Pierre and physicist Henri Becquerel) and one in chemistry. She carried tubes of radium around in her dress pocket as she pioneered early research in the use of radioactivity to treat cancer and studied how to use X-rays in medical diagnosis. During World War I, she procured and rigged up Renault trucks with radiological equipment, taught a bunch of women how to take X-rays, and sent them off to diagnose wounded soldiers on the French battlefields. Folks called the mobile radiology clinics Petites Curies. She worked in a field dominated by men, and while some of those men caused her endless troubles, her brilliance and diligence set her above pretty much everyone working in the physical sciences at the time. 

I've also been thinking about the fact that my care team is made up pretty much entirely of women. Sure, some of the techs and nurses and at least one of the radiologists who reads the MRIs and CTs are men, but my regular onc, my rad onc, the medical physicist working with my rad onc, and my PCP are all women. 

One night, I had a dream that my rad onc and Marie Curie met up in a cozy Parisian bistro for drinks, and I was their server. They got a little rowdy (no doubt my rad onc was the instigator), and I joined them in cussing out the French Academy of Sciences for not admitting Marie in 1911. Yeah, well, I have four brain tumors; I can have any kind of dream I want.

And speaking of women in science, here's Maeve, my radiation mask. 

She's named for a certain character in a certain HBO series that I quit watching about halfway through the second season, and if I had chosen another female character from that show to name the mask for, it might have been Dolores, but that's my mother's name, so that would have been weird. Anyway, Maeve will keep my head quite, quite still as I undergo several Cyber-knife treatments – or CK as they say at the clinic – over the course of several days, beginning on Wednesday. CK is very precise, targeted radiation, aimed to hit the li'l spots and only the li'l spots, and to leave the rest of the brain tissue undamaged. And that's good, since it's my brain we're talking about here; I'd like to keep as much of it intact as possible, because I don't really have much to spare.

If you're a praying person, I'll ask for your prayers now. And if you're a vibing person, I'll take all the good ones you can spare.