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.

I Don't Know (And I'm Fine With That)

I like it here. Even though the outside temperatures are dropping, even though daylight is calling it quits earlier and earlier, even though it feels like my own tiny world is filling up with old and new grief, I'll take it, all of it – even if that means being heartbroken, pissed off, AND grateful all at once. And living with cancer. Despite the current rough weather inside and out, I'd very much like to stick around for a bit longer to hang out with all you freaks of nature and nature freaks.

How is it that humans can hold so many disparate emotional postures at the same time, like we're some kind of psychological acrobats? People, people, we ALL do it, ALL the time. I don't know how. Magic? Denial?

Earlier this month, I lost a good friend to ovarian cancer. Ann died on her wife Kate's birthday. I hadn’t been able to see my friends recently, because Ann and Kate live far away, and either Ann was too sick and/or in treatment or I was; we kind of took turns at being cancer-chronic. But Ann and I spoke on the phone a few days before she fell silent forever. I could tell she was in some pain; her voice sounded small and squinched. She was scared and really sad, but she also felt completely loved and cared for by her amazing wife, who is now carrying an unfathomable grief. Ann was a brilliant and funny woman, a voracious reader, and a wry humorist. Here's a favorite memory: when she learned I'd never seen the movie Steel Magnolias some years after its release, she made me sit down and watch it with her, and performed all the best bits of dialog as they happened, with appropriately exaggerated accents. I was quite literally rolling on the floor laughing. We laughed together a lot, and that kind of joy is a precious thing. Most of all my friend was profoundly kind, instinctively compassionate, and extravagantly generous. Sometimes I think her heart was too big for this world.

And here I am, just walking around in a life with an Ann-shaped hole in it. We've all got those holes shaped like people we have lost, and the grief that frames them. And yet, we get up with our grief in the middle of a roaring, thumping world that's constantly summoning us to do all the things. We work. We eat. We tend to what's in front of us, and eventually we'll open that pile of mail. Of course we've got issues with mortality. We have to sit with our grief, but the world won't let us do it for very long. And though lots of folks are happy to tell you they have the answers about where we're all going when we die, I find myself suspicious of such certainty. And I'm a person of faith. I know that's a strange thing for someone like me to say. Though I am by nature hopeful, I am perhaps in some proportion as much distrustful and doubtful, and I have had from time to time a dalliance with despair. So my faith is a weird little beast. Instead of being based on a dogmatic assertion – that stalwart belief in an all-loving higher power who is going to take care of me even when I die – my wee beastie faith looks more like a question. And, weirder still, I don't know what the question is, only that the kind of faith I have feels like one. Maybe that's because a question comes from yearning, and yearning relies on faith, even vague yearning, because there is something for which we yearn, even if we don't know what it is. So faith is part of that reaching out, that yearning.

But I don't know. And I'm fine with that.

Inappropriate Happiness

When I started chemo back at the end of September, the nurse giving my first round of infusions was required to read aloud to me all the potential side-effects of the five different medications I was about to receive. When she got to the powerful anti-nausea drug, one of the several side-effects listed was "inappropriate happiness." I burst out laughing when she said the phrase; it seemed absurd, those two words together, right at that moment, in that place. The nurse smiled too at my laughter, and went on about her life-saving business, gathering the various bags of cancer-killing fluids destined for my veins. And then, I found, I couldn't stop laughing. Just when I had calmed myself, I'd look around the chemo suite at all the sick people getting infusions, and I'd erupt in side-splitting, uncontrollable giggles again. When the editor-in-chief of a magazine I write for rang my mobile in the middle of one such outburst, instead of letting it go to voice mail and calling him back like a grownup, I giddily answered, giggling a breathless hello from my chemo lounger. And I hadn't even taken the inappropriate happiness-causing anti-nausea drug yet. Thankfully, he's a good guy who totally understood the weirdness of the moment and was only calling to green-light a story idea we'd been kicking around. He wished me well, and I went back to (more quiet) giggling and getting the stink-eye from other patients who failed to see the absurdity of our inappropriate happiness. I know. I'm a horrible person. And rude. Really I should take my cancer treatment more seriously.

Eventually I settled down enough to get my infusions, and I've returned for subsequent treatments, which my latest scans indicate are doing their job in keeping the metastatic cancer in check. The drugs and radiation have bought me more time. So giggling aside, I have reason to be happy enough with the outcome of my chemo suite visits. Especially today, which marks my second cancerversary. Two years ago on November 9, I received my diagnosis via a phone call from a young pulmonologist as I was driving home from work. (Poor guy. It has to suck to have to make those calls.) Though I had pulled to the side of the road to get what I had anticipated to be not great news (curable lymphoma maybe? something else perhaps infectious but curable? anything as long as it was curable?) hearing I had advanced lung cancer made me feel as if I were driving off a cliff. Now I am running along that clifftop every single day. Life with metastatic cancer is, indeed, an existence on the edge, in lots of ways; in my case, I stand on the cutting edge of research I pray daily will outpace the disease.

As my calendar closes in on the last of scheduled infusions, I've thought more about the idea of inappropriate happiness. Right now, I'm responding to current treatment well, a combination of radiation, infusion and targeted oral chemo. My medical team is amazing; I'm privileged to have some of the best oncologist-researchers in the country working on my case. I am blessed with family and friends who care for me with an unmatched degree of love and tenderness. I have good health insurance. And for a poet like me, inclined to eternal melancholy, I am, for the most part, on most days, dare I say it, (mostly) happy with my life.

But I still turn the phrase around and around in my head, "inappropriate happiness." Given the broken state of this world, it makes a weird sort of sense. To be able to say "I'm happy" – in the midst of the muck, when we could be expressing anger, outrage, and especially sorrow at what we've done to the planet, at our own sad plight – is probably inappropriate. Like waltzing through a battlefield in a gown or tux, to declare one's happiness, to think of joy in the midst of devastation is absurd. But still, maybe, beautiful. And absolutely necessary.

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!

It's All Happening!

Our Nashville Breathe Deep Stache & Lash 5K run/walk event is happening THIS SATURDAY, OCTOBER 19 at Shelby Bottoms Park. Registration/check-in starts at 7 a.m. and the run/walk starts at 8 a.m.. The event is family- and pet-friendly. Bring kids! Bring pets on leashes! Wear your running tutus or other costumes! Dress up your pets! Prizes for Best-Dressed Human and Best-Dressed Pet, and race and fundraising winners!

Online registration closes Friday at noon, but we'll still take walk-up registrations on site. You can join the wonderful team founded by my beautiful colleagues at Volunteer State Community College by going here: The Litwits.

Nashvillians, neighbors, and jet-setters, come out and enjoy a pretty autumn morning with us! It's going to be a gorgeous day to raise awareness and raise funds for lung cancer research and patient advocacy.