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.

Li'l Chemo, Li'l Fundraising, and a Bit of Pondering

Shelby Park

Here's the short version of my update, with longer ponderings added in below in case ya wanna go there. After having had radiation to treat cancer in the brain and in a lymph node, your friend Gamma Girl is now having infusion chemo plus oral chemo to follow up. It's going as well as chemo can go, which means I am spending a lot of time in a horizontal position streaming Hulu. My family and pups are taking good care of me, and I know I am incredibly fortunate to have them. Also, from my horizontal position, I am fundraising and helping to organize a Lungevity Foundation Breathe Deep 5K which is happening on October 19 at beautiful Shelby Park. The Lungevity Foundation is awesome and gives tons of money to research and patient advocacy, and it's hard to raise money from the post-chemo-infusion couch, so I'd love some help. If you have it in you to indulge yet another funding raising plea (I know FB is full of them!), click Breathe Deep and join my team, The Litwits. The team was founded by my beautiful colleagues at Volunteer State Community College. We're a crew of excellent English teachers, rad writers, and lovely weirdos!  If you live in or near Nashville or are a jet-setter who likes our country music-themed airport, you should totally come. Wear your running tutu, bring the family, dress up your dogs; it's a fun run! If you can't come but still want to be a part of it, maybe you could donate a little something to the cause of lung cancer research.

For more on the challenges of fundraising and infusion chemo, see the ponderings below, if you have a little time. Also below are some pics from last year's race. It was really cold that day because it was in late November, but we had a blast and raised some real dough. I promise the weather will be better this year with our October 19 date. Y'all come on out!

Long-ass Ponderings On Why I Continue to Fundraise

Know what I hate and am also not good at? Asking people for money. Just in general. For anything – for myself, for causes, for other people. Not good at it.

The truth is nobody likes to ask or to be asked for money, in most cases. Americans are actually pretty good about holding fundraisers and sending some spare change around to a few favorite causes when invited – Girl Scouts, cheerleaders, Little League, school band, churches, etc. Some of us donate to political campaigns. Me, I'm a sucker for scouts, the YMCA, and public radio. I also recognize that my donation patterns don't happen out of my innate desire just to do good. I have been and am a direct beneficiary over and over of those organizations I so gladly support, as is the case with many of us who have the privilege of being able to do any charitable giving or volunteering. We give because we are touched by something that organization does.

When I was diagnosed with stage IV metastatic lung cancer, I suddenly had a new cause that mattered directly to me – lung cancer research, of which I continue to be a direct beneficiary. I wanted to raise money, lots and lots of money for this suddenly very important (to me) cause. And not just because I believed it would lead to a cure or better treatments for me specifically, although let's not kid ourselves – it is, of course, one of my fondest wishes to die a very old, eccentric woman, and of something else besides lung cancer. But my fundraising impulse wasn't driven just by hope for my own kookie, aged survival, nor was it driven by some sense of lofty altruism. I started fundraising because I got pissed off, pure and simple. Early in my research about the disease, I learned that lung cancer is the NUMBER ONE CANCER KILLER IN OUR COUNTRY AND YET IS ALWAYS AT THE BOTTOM OF THE LIST FOR GOVERNMENT FUNDING OF RESEARCH.

And that hardly seemed fair. I should mention here that in addition to scouts, the YMCA, and public radio, I also love an underdog. Lung cancer is the underdog of government-supported cancer research funding, which is actually the main reason I was called to the funding fight. Why, you ask, is lung cancer the funding underdog if it's the NUMBER ONE CANCER KILLER? That doesn't seem logical, you say.  I know. I KNOW! But emotions are never logical and people have a curious emotional response to lung cancer – victim blaming. They immediately believe you gave it to yourself by smoking, so it's your pickle and you need to get yourself out of it.  I can't tell you how many times people have asked me about my smoking habits upon first hearing my diagnosis. It's a little disheartening to see the skepticism on their faces as I politely explain for the millionth time that ANYONE CAN GET LUNG CANCER, because as judgmental non-smokers, they want to continue to believe they are not vulnerable. I totally get that. You do everything you can to live a good, clean, cancer-free life, and it really sucks to be told you can still get cancer no matter how much kale you eat. But lung cancer can, indeed, happen to anyone, even non-smoking vegans. Fact.

Of course there is a high correlation between many cancers, many other illnesses and smoking (thanks tobacco industry for your brilliant and lethal marketing), but lung cancer has become the most stigmatized by its association with these tobacco merchants of death, even though non-smokers get the disease too. Regarded as a "smokers'" cancer (which, by the way also associates it with poverty, another stigma), it is seen as somehow unworthy of our government's research dollars. In fact, just this past month a spending bill that would have supported and prioritized a separate fund for lung cancer research came out of committee without those funds prioritized; lung cancer is going to have to compete for research funding with lots of important though less lethal cancers. And it's going to lose. It always loses. And that's where foundations come in.

So yes, I want to see a cure for lung cancer in my lifetime because, duh, I have metastatic stage IV lung cancer. I also know that might not happen, no matter how much I hope or fundraise for research. But I'm fundraising anyway, in part because I have already benefited from existing and current research, so my fundraising is a way of paying that back. Also, I have come to see myself as part of a wider lung cancer community of fellow patients, their families, researchers, and medical providers, and the people who love them all, a community that will extend into the future until we find a cure. My fundraising is also a way of paying it forward into that uncertain future, of trying to assure that research will continue to benefit anyone who might need it, because ANYONE, Ma, Pa, sweet, non-smoking Aunt Marylou, can get this stupid disease. So here I am waving at ya from the couch, a crappy fundraiser, in need of a li'l help from her friends.

Infusion Chemo 

And now, I'll climb down off the soapbox to give a quick chemo update.

After considering my limited options for addressing recent disease progression, my lovely and fierce onc Dr. Johnson and I settled on a multi-approach care plan that includes radiation, followed by continued use of lorlatinib at a lower dose, plus four rounds of infusion chemo, which we hope will act as a kind of dragnet to catch whatever cancer slipped lorlatinib's leash. The thinking is that if those mutated cancer cells get killed by the cytotoxic chemo, I'll be able to go back on full-strength lorlatinib and that it will hold me for awhile longer. The chemo I'm on, pemetrexed and carboplatin, is "well-tolerated," and is infused along with a ton of anti-nausea medication, so I'm not puking my guts out. The fatigue has been pretty awful, though, and I've had some dizziness, which could be a holdover from radiation too. Anyway, just today I finally feel like I'm really pulling up from the muck of it, which gives me a couple of weeks of "good" time to be productive (looking at you East Nashvillian magazine!) before I hit the couch again. I am scheduled for another infusion the week of the Breathe Deep 5K, but I'm still planning to volunteer at the event, even if I can't run. Hope to see you there.

The Case of the Disappearing Spots*

When I went to the clinic yesterday for what I thought was going to be the first of four CyberKnife procedures, it turned out they had me scheduled for only one procedure. What? But when I'd gone for the consult a few weeks ago, the rad onc told me it looked like I had four cancer spots on my brain and that I'd probably need four sessions, one to treat each spot. Nope! Much better news! It turns out that on closer inspection with the super-duper stereotactic brain radiation planning MRI in August, my lovely rad onc was able to see only two li'l spots in my noggin instead of the original four we thought were there back in July, so she was able to zap both li'l spots (which, she is certain, were indeed cancerous lesions) in the same session. But what happened to the other two spots? The good doc suspected that they had perhaps resolved on their own and might just have been enlarged blood vessels. Whatever the reason, I'm glad and deeply grateful they are both gone, and I'm glad the two remaining spots got zapped and are curling up to die as I write. 

Today I am tired and dizzy, and my face is a big fat full moon from the steroids I have to take to keep my hot mess of a brain from swelling, but I am finished, after one treatment, with brain radiation. Now for some rest.

Here's the upshot regarding prognosis -- I am likely never going to be "cancer-free" unless research really speeds up a lot and the brilliant minds find the miracle cure. I've known that since the beginning. I had been very hopeful that I would get more time on the two inhibitors we've tried, as other patients have gotten years on both crizotinib and lorlatinib. That still could happen with lorlatinib with help from radiation and chemo, but my cancer sure does like to mutate quickly, so we'll see.

I really do hold stock in what my first onc, Dr. Peacock, had to say when I was first diagnosed: "We're hoping to treat metastatic cancer as a chronic condition, and we're hoping the research outpaces the disease." Where the research is leading now is in the direction of personalized, genetically tailored treatments (vaccines), immunotherapies, targeted therapies, and combination treatments like the one I am trying (targeted therapy (loraltinib) + radiation + chemo). My new onc, Dr. Johnson, works on the cutting edge, right where I am disease-wise. So I remain hopeful that if we nip and tuck these pesky pop-ups, and I maintain a healthy lifestyle, I'll be able to live a long time with this rude little cancer gangster doing life in inhibitor prison. Maybe one day it will disappear like those two spots.

*This content is adapted from a CaringBridge post which goes into more detail about upcoming treatment, so if you want to see that you can visit Leslie's CaringBridge journal.

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. 

RIP Spot

So it really happened; li'l Spot, the latest tumor to take up residence in my body, got treated with radiation last week. Three rounds, one each on Monday, Wednesday, and Friday. I'm not sure whose ass got more kicked, mine or li'l Spot's. Hope it was Spot's. Sorry, not sorry Spot.

Side effects? Oh hell yes! Ya don't take a bajillion grays of radiation with no after-effects (okay, probably exaggerating there about the amount of grays). I mean, just look at all the Marvel and D.C. superheroes who have tangled with radiation and were in many ways better for it, if more Byronic! But, my side effects haven't been nearly as glamorous as theirs. Just some nausea and some deep fatigue – profound fatigue like I've never known, like the flu only hints at. And three days out from my final treatment, my ass remains kicked, which is why it's taken me so long to get to this post. (Side note to those who saw me out at The 5 Spot on Saturday...who can resist Raygun doing all those great punk covers with Pete Pulkrabek on drums? Notice I had to sit down the whole time, no dancing, and I was drinking seltzer.)

If you haven't had radiation, I hope you never have to, unless you get some real superpowers from it. The treatment itself is not horrible; heck, you don't even feel the gamma rays going in from the giant robotic radiation shooter. It's what comes after – the nausea, unimaginable fatigue, and foreboding sense of DOOM – that I wouldn't wish on anyone. The greenish-blue glow is kind of cool though,

but I don't think they'll let me in The Turnip Truck let alone  touch the produce looking like this.

Anyway, the anti-nausea drug has kept the worst of the pukey side effects in check; the only really bad day for nausea was Wednesday. And yes, I'm sleeping LOTS, probably an average of 12-16 hours if we count all the naps. When I'm awake, I seem to be in some kind of post-radiation funk of mild depression and confusion at losing a whole week.

In Cancerland, people with metastatic disease are always talking about "the new normal," how so much of a cancer patient's life starts to bend itself around this disease, how we do things to our bodies (like getting shot full of gamma rays) we'd never dreamed of just to get a few more years or months with our dear ones. Radiation is one of the many crazy things we do for no other reason than we want more of everything: more birthdays, more pizza, more trips to the beach, more love. But what good is that "more" if it's full of fear and worry?

I spent a frustrating two months trying to get treatment lined up, at one point giving myself such an anxiety attack I didn't want to leave my house. Shortly after those terrible few days of my being an anxious, agoraphobic ball of helpless, writhing paralysis, things began falling into place, and a treatment plan emerged. But it wouldn't have if I hadn't persisted and if I hadn't had the help of another lung cancer survivor, my rescuing angel Patty Watkins. I had to focus. And it was not what I wanted to do.

What I wanted to do was forget I have metastatic cancer. I mean, I can't feel the tumor. It's too small to cause any discomfort. And I didn't love the idea of pouring toxic radiation into my body on top of the already toxic oral chemotherapy I take daily. Maybe I should just have forgotten the whole business. Another person whose blog I follow, Linnea Olson, has recently written about "forgetting" her cancer for a few months, and the fact that she's out of treatment options after fourteen years of survival with ALK+ lung cancer. To help her with "forgetting" she took a long trip to Italy, and, guess what? The disease showed up as stable (no progression) in her scans afterward. Maybe that would have worked for me. (Hi Italy! I miss you! Hope to visit you soon!)

But that's not what I chose, this time, because unlike Linnea, I still have some treatment options left. Getting Li'l Spot zapped before he got to be a bigger Spot, or multiple Spots in other places, was the right thing to do. It's not a permanent solution to my situation, but there isn't one, right now, since this cancer can't be cured, yet. Sure the disease will probably rear its ugly head again in the future, though we hope with the help of the gamma rays not for a long time, whatever "long time" is in Cancerland. My choice to go with radiation is not a decision I regret. There's good, scientific evidence that this type of treatment works well for patients in my position, at least for awhile. What I do regret is the fact that I let my anxiety about treatment, about the disease, about judgement for how I handled my treatment, and (perpetually) my anxiety about my next set of scans get in the way of my joy. I can't say that will never happen again, but I'm going to try much harder not to let the disease rule my will or steal my joy. 

RIP Spot. Long live Gamma Girl.

I Will Believe It When It Happens

And so, just over two months since my li'l tumor, Spot, was discovered by CT scan, I've got a date with the gamma knife to zap him out. Three dates, actually. Next week on Monday, Wednesday, and Friday mornings, my rad-onc is gonna kick Spot's li'l butt with her light saber. So far, we've gotten the insurance folks to play along, so let's hope it stays that way. Fingers crossed. Very, very grateful that I finally get to go see the woman with the power tools next week. It has taken a long time to get here, too long according to some medical professionals I happen to know. We're going to take a look at the root causes of delay in hopes that it doesn't happen to someone else.

Thankfully, I still feel quite well, with no real pain or symptoms from the tumor. I'm only dealing with that pesky anxiety that all metastatic cancer patients live with every day, wondering what each new scan result will bring. I'll know more about that at the end of July.

I hope this fancy and expensive treatment will keep disease progression under control for a good long while. I'm lucky to live where I have access to it and to have health insurance that will cover most of the cost. I think. So they say. At the moment. Okay, so I have trust issues when it comes to bureaucracies. I think that's pretty healthy.

My Bad. Or, Another Personal Essay Meditating, in Part, on the National Health Care Crisis, with Opinions Based on the Tedious Author's Experience, and Accompanied by Much Whining and Complaining

(This post is adapted and tidied up from one I included on my Caring Bridge Blog recently.)

Never assume anything. Like the fact that a referral to a provider within the same medical oncology group is to a provider who is "in network" for insurance. Because if you do assume, bad things will happen, even if you are one of the lucky ones.

Por ejemplo: Last week I was thrilled to have finally landed a consult with a wonderful radiation oncologist, one of the tops in town, who happened to have an opening when others who could treat me did not, and I got scheduled for a planning meeting for this very week! This good fortune befell me after nearly two months of waiting. And of course, any fool with good fortune knows that one must always check out the insurance situation when facing a super costly treatment. But yours truly, Assumptions Woman, did not: 1) because once Assumptions Woman signed up with this oncology group, the providers' offices did all the legwork of approvals, so Assumptions Woman had never had to check about insurance for individual providers in this group for past treatment; it just got handled by them, which was lovely and is no longer the case, and 2) because Assumptions Woman was freaking out as it had been some 50 days since her unruly Spot had been found, and she was so damn happy that she had finally gotten an appointment with a radiation oncologist, she didn't bother to ask if the rad onc was "in network."

My bad. Turns out she's not, of course. And it turns out the email regarding that fact and denying her service to me came to her office AFTER I drank her barium shake and was IN THE PLANNING CT machine and the pleasantly chatty techs were marking little X's on my body so that we could line up all the radiation beams correctly when I went in for actual treatment on July 8 as scheduled.

Every other procedure I have ever had in relation to this disease (except emergency surgery for a pericardial effusion) was pre-approved by my insurance before I could even so much as walk in the door of a clinic; I mean I couldn't even have a kleenex to blow my nose without the providers asking the insurance gods for permission, let alone a little ultra-sound or brain MRI. So, I assumed (what was that we said about assuming?) that the pre-approval process for radiation had all been done before I drank the barium and got on the planning table. Nope. We just went ahead and started the planning session without any approvals, apparently. Not sure how that happened, but I suspect poor communication all the way around had something to do with it.

So the lovely rad onc felt pretty crummy about all of that, and she's going to file an appeal with my insurance company so that she'll be able to treat me and get paid as an "in network" provider. That means she has to spend extra time dealing with nonsense, so I appreciate her willingness to pursue it. She can justify her appeal because she has some equipment and some techniques at her disposal that other providers nearby don't have (which, as I said, makes her one of the best around), and my li'l tumor, Spot, is in just a weird enough place as to be super tricky to hit with gamma rays without wrecking other important parts nearby like the small intestine and kidneys. Plus, my treatment has been way too long delayed by some things that look dangerously like incompetence or just crappy communication in the oncology group's broken bureaucracy. But, the appeal will take time, and will likely cause more delay, and if it's not approved, I'll have to get in line again with a different rad onc. Heck, it'll be time for my regular surveillance scans again before I get any radiation. Why were we doing those surveillance scans again? Oh right, to get timely treatment when progression is discovered. So much for that plan.

Thank goodness I still feel well and have no symptoms suggesting the cancer has spread. I am seriously lucky and very very grateful for that.

Several people have asked why I just don't run across the avenue and get treated at the other famous cancer treatment center in town. I am considering that, but in exploring that option, I am again confronted with some similar issues...long wait times to see providers, the prospect that some are not in network, the hassle of having all my records shifted over there, of having to tell my story again and again to new doctors, new nurse practitioners, a new bureaucracy. If I have to do it and insurance allows, I will; but I keep feeling that I'm so close to actually getting treatment with my current providers that I don't want to set myself up for another long wait time. Maybe it's something akin to Stockholm Syndrome. Of course another option is to switch all my care to Mass General under Dr. Shaw, where I am already a patient, and Dr. Shaw has indeed offered to schedule me for radiation up there. But the idea of returning to regular travel to Boston for care is somewhat daunting, especially when I know it is possible, at least theoretically, to get that care here in Nashville. Again, I am giving Mass General strong consideration and will do it if it becomes necessary. But it's just super-targeted radiation I need, not a fancy new clinical trial. At least not yet. And it's remarkable that I even HAVE ALL THOSE OPTIONS. Most people do not. Many people have none. 

For instance, take the fact that rural communities all over the country, but especially in Tennessee, are losing providers and clinics and hospitals faster than you can say "treatment delay, " in our case due to our state legislature's stubborn refusal to fully fund Medicaid and participate fully in the AHA. That puts things more in perspective. For a good take on root causes of the rural health care crisis, you might want to check out this opinion piece in The New York Times.

In all of this the main take-away for me is that no matter how vigilant and how proactive I think I am about getting care, there will always be something beyond my control, some problem I don't foresee, some detail I miss, some larger incompetency or built-in bureaucratic maliciousness that can't be overcome no matter how persistent one might be. And that worries me, not so much for myself, but for those cancer patients who maybe don't have the wherewithal to navigate this labyrinth of a health care system in the first place and have no one else to advocate for them. I am pretty good at advocating for myself, and my care is still screwed up, just when I thought I was finally getting somewhere. Imagine someone who isn't literate, or who doesn't speak English as a first language, who doesn't have a public blog to air their griefs, who has a disability or is incapacitated in some way or who has no family support? So, overall, I am still a fortunate person who has found herself in temporarily unfortunate circumstances. There are worse things. 

I just hope I don't have to drink another one of those barium shakes any time soon.

The Story of Spot and a Study

It's called disease progression, and apparently I have it once again. So says the Spot on my April CT scan, a Spot which also appeared in the same place on a PET scan in May. A biopsy last week confirmed that said Spot is metastatic. Bad Spot. Go away Spot, go.

Currently, Spot is hanging out in a lymph node on the left side of my back just below my kidney, or, to put it medically, I have metastatic lymphadenopathy in a retroperitoneal periaortic node. No biggie. It's just a little stray cancer trying to find a forever home in my body. But it looks like I am going to have to put old Spot down. Quite possibly with a high dose of radiation if an increased dose of lorlatinib, my current treatment, is not indicated or likely to be effective.

The worst part of all the recent cancer doings has been the waiting. There are appointments. There are tests. There are days between tests and appointments. Then there are more tests. Then more appointments. I've known about the potential progression since early May, but it wasn't until Monday of this week that I got definitive confirmation. As of today, we (me and the docs) still don't have a treatment plan in place because we're doing a couple MORE tests to see if the cancer has developed any new targetable mutations; then there will likely be a few more medical professional consults, so, more waiting. Sigh. I KNOW! It's SOOOO frustrating! I mean we're talking about metastatic cancer, which means it's growing, albeit fairly slowly (we hope) and, well, YIKES. This aggravatingly super slow pace of arriving at a new treatment plan isn't helping me feel better about my situation, but it seems to be typical of life in Cancerland.

So, the shitty disease is no longer stable, and I've lost my coveted NED status. BUT there are silver linings. Nope, just kidding, there aren't. Metastatic lung cancer is a stone-cold killer, and there's still no cure. If you have it, the disease will fuck with you in all sorts of terrible ways, and eventually, because it can't be cured, it will put you in your grave; that's it's M.O. I've seen it do just that to other folks. Just sayin', the terror is real, and research funding for the much-stigmatized lung cancer is scant.

So, in lieu of silver linings, here are a couple points of gratitude. First, my brain MRI shows there has not been progression to the mothership of my central nervous system, so far, so good there. Secondly, because I had a CT-guided biospy, and because the interventional radiologist who did it was able to harvest a bit of extra tissue, I am able to participate in the ROS1 PDX Research Project which is trying to develop more ROS1 cell lines for study. Right now research on ROS1-driven lung cancer is proceeding very slowly because we don't have enough mouse models to study the disease. That's because only about one percent of people diagnosed with lung cancer have tumors driven by the ROS1 genetic rearrangement. So eligible ROS1 patients are encouraged to donate tissue to the study whenever they have a procedure like a biopsy or other surgery that could yield a viable specimen. It's sort of your ultimate DIY life-saving science project. PETA friends will be horrified to know that four potential mouse models were created by my metastatic biopsy tissue donation, poor mice. Me, I'm kind of excited about the research possibilities, though I admit to feeling pretty badly about the fuzzy li'l critters. (Moment of silence here.) Thank you for your service and your sacrifice, dear little rodents.

Hey, so you knew I was going to ask, but if you want to help support this ongoing ROS1 research that could potentially lead to a CURE, now would be the time to donate to my ROS1 Research fundraiser with the GO2 Foundation for Lung Cancer (formerly the Bonnie J. Addario Lung Cancer Foundation). The findings from this study may have the potential to change treatment for other oncogene-driven cancers as well, with broader implications for cancer treatment overall. Since I donated my own living metastatic tissue to the study through a somewhat painful biopsy procedure, maybe a few readers could spare a few bucks as a kind of matching grant? Okay, that's a little gross, but you get my point.

And despite all my whining and complaining, I am doing my best to maintain a posture of gratitude and to keep the faith.

The Little Gods of Death

After spending the first two weeks of April in New York, I returned home to a stack of mail, most of which was junk, of course. But, in that pile of credit card offers and sale circulars were two packages. I opened the smaller of the two first to discover a book, of sorts. It was not one for reading, or not so much, but one for writing in. It had pages like one might find in an old-fashioned baby milestone book, with blanks for putting in important information and dates, much as one would enter a baby's height and weight, vaccinations, first steps, first words, first day of school, etc., all the details of baby's first years lovingly curated as a keepsake.

And apparently, the book I received this month is intended as a kind of keepsake too, because it says so in subtitle right there on the cover: The Healing Heart: A Special Family Keepsake, just above an embossed dedication to the memory of my father. Inside are pages upon which I am encouraged to write down the details of his funeral and burial, pages for filling in my dad's ancestry, and a page to list favorite memories. The book, a "gift" from The Heritage Company, also contains many pages of instruction and advice about how to grieve properly. Oh, and tucked handily between the cover and first page is a note listing the "caring friends and neighbors" in my local business community who funded this little project: a bank, a realty company, a water treatment service, a tire shop, a flower shop, and the funeral home. Along with the note is a booklet of small postcard thank you notes that, according to the booklet instructions, I am encouraged to send to those merchants.

I did not know projects like this, a funeral book with local sponsors (and by local, I mean my hometown of Saugerties, not Nashville, where I live now), existed. But I do know it immediately for what it is – a collaboration between the funeral home and The Heritage Company to turn a buck. And I suppose someone else might have opened the package and thought the book a nice thing to have, and perhaps might have been helped by it in their grief. But I find it creepy and a little predatory. I mean, a sponsored funeral keepsake book with accompanying instructions for grieving, along with a command to send thank you notes to said sponsors? I think I'm entitled to be weirded out by this "gift."

The second package, bigger and much heavier than the first, contained a desk clock. Or, to be more precise, it is a clock mounted in a piece of polished wood next to a plaque bearing my name and explaining that the clock was being sent to me upon my retirement in gratitude for my years of service in the classroom. I thought the tradition of clock- or gold-watch-giving on the occasion of

one's retirement had gone the way of the company pension plan, but no. And now here I am with an unasked for reminder of my own mortality. Tick. Tick. Tick. I would have maybe preferred an actual pension. Or if I had to be measuring something, perhaps an astrolabe. And what a strange tradition anyway. Retirement means not having to keep track of time, or at least not so very much. I wonder how many gold retirement watches got a second life in the pawn shop? My husband now and then likes to tell a story about a relative who worked her entire life in a cotton mill in a small West Tennessee factory town. She never missed a day of work, and she was never late. Of course the company gave her a clock in appreciation when she retired, and she, by all accounts, fairly relished the irony of any suggestion that she needed a timepiece.

 I suppose there's more to say here about the macabre serendipity of the book and the clock arriving at my house around the same time, these little gods of death, but I'm not going to read too much into the symbolism. It's enough that I have scans this week, and an appointment to see Dr. Shaw in Boston next week. Even without the funeral book or the retirement clock, I've got plenty to remind me that death is out there angling for me, for all of us. And what do we say to the god of death? Not today.

My Goodness, What Big Ears You Have

Lop-eared, like a rabbit, I've decided. I mean, one could have donkey ears, basset hound ears, elephant ears, even giraffe ears; they'd all be bigger than normal human ears. But I'm picking rabbit ears for imagery here because it's spring bunny time and loppies are super cute. And as of today, I am supposed to have bigger ears, so I am leaning toward lop stylings in keeping with the season. I mean, I didn't take official before-and-after measurements, but still, I don't doubt that those flappers on the sides of my head, which weren't so small to begin with, have grown a bit, especially since I've been feeding them A LOT of music and poetry these past few days. Turns out that feeding music and poetry to one's ears is the truly avant-garde method of fighting pretty much anything that ails a body, way more experimental than any clinical trial, way more effective, probably, and a lot more fun. Here's my method:

Start by going back to a city where you used to live, a place you learned to love the hard way, over time, long ago. It was a good city for living in when you were always broke and studying and making plans; rent was cheap. You survived on pizza, ramen, and beer, lived in a half-dozen different places over the years there, all of which were varying degrees of tumble-down and shabby, but full of art your friends had made. And lots of books. There were too many romantic entanglements and too many lonely months and years. When you finally left town over a decade later to go be a grown-up, your heart broke a little as you watched the mountains get smaller in the rearview.

When you get back to that city so many years later, go in for the great big genre-defying music festival which has made the place famous these days, and walk everywhere. You always did walk everywhere back in the old days, and you can again. It's the same city, better in some ways, worse in others. One way it is better...the walking. You can walk to so many bougie things you like now, shops and restaurants and galleries, theaters and music halls. The entire downtown, which had once boasted so much empty real estate, is bustling. There are things, and you can walk to all the things. Up and down, up and down the streets and hills. The weather is fine; the cherry trees are blooming; it's spring and perfect, and you walk and walk. And walk. Miles and miles before the long weekend of music is over.

Go inside the churches and theaters and clubs and galleries for all the music and poetry and art all day and all night. Sounds and words you've never heard, jazz and not-jazz, string music and space music, music wrapped around poems, and music bashing into screens and scrims. Screams and saxophones, singing and shouting, harmonium drone and happenstance, ballet and balls-out photography. Try to see and hear everything and fail because there is too much and it is impossible. Stand in line, stand in the venue, listen, walk some more. Go in again. Listen to the people playing, singing, speaking, most of whom you've never even heard of. Listen to the people talking about the people playing; listen in between, listen, listen. Listen to all the weird stuff, almost none of which you know, and if you did, now you hear it in a different way. Be puzzled and curious and surprised. Be glad and listen some more, to all the sounds, the various languages, the idioms, the words and the silences. Deal with the crowds even though you hate crowds. Embrace the too-muchness or let it embrace you. Listen for four fucking days. Be amazed and grateful that you, formerly very, very sick you, can do ALL OF THIS!

And you'll feel better because you'll have gotten avant-garde aesthetic amnesia, in-the-momentness, the real cure for, well, just about anything that needs fixing. You'll go home with a full heart and a mind twisted up like some crazy beautiful sculpture, wrapped around the love of old friends who welcomed you back, took you in, fed you pastries and cheered you on as you fed your ever-growing ears and felt yourself...healing.

My So-Called Memorial Tree

Last year on March 20th, John and I planted a small weeping cherry tree  in the backyard. The weather was chilly that day; rain and sleet took turns falling and calling the calendar into question. We could have put off the planting for another day when the weather was fine, but we'd bought the tree specifically to plant on March 20, the first day of spring and my 55th birthday, the first one since my metastatic lung cancer diagnosis. I was determined to get that twig in the ground. So we put on our rain parkas, dug a muddy hole, set the tree, and filled more mud in around it. It felt like an act of defiance, of the weather, yes, but also of something else, the nagging fear that tucks in alongside a metastatic diagnosis. I crossed my fingers and prayed that the tree would root well and bloom the next spring, and that I'd be around to see it. Of course, there was always that other possibility, one I didn't want to entertain – the weeping cherry could end up becoming my "memorial" tree, and its roots maybe even home to my ashes.

That's not what happened, obviously. Instead, I went ahead and had myself a 56th birthday, which I celebrated today with family and friends and neighbors on this first day of spring at one of our favorite East Nashville restaurants, Lyra. I didn't used to always go big on my birthday, but I've changed my mind about that since, well, ya know.  So carpe feliz cumpleaños and all that!

In that spirit, we had a community happy hour (actually a happy two hours) of cocktails and kabobs (cooked outside on the grill Lebanese style by Chef Hrant) and a wonderful Armenian layer cake (made by co-owner Liz, who happens to be married to Hrant). I invited lots of lovely people, and lots of them came. It was sunny and festive and kind of perfect out there on the patio honoring the Vernal Equinox. Plus a portion of the proceeds from that little party are going to The Addario Lung Cancer Foundation for the ROS1 Research Project.  So it was an entirely wonderful 56th first day of spring. And birthday.

And –
this:

Eating All the Cake

During the first months after being diagnosed with ROS1 metastatic lung cancer, I took a daily chemotherapy pill, Xalkori, 250mg twice a day. The side-effects were crummy, not as bad as other forms of chemo, but still, I puked a bunch. I lost weight, of course; food wasn't such a pleasure, and I couldn't drink coffee or tea at all, which was a big deal to this caffeine slave. When I started in the clinical trial on lorlatlinib (now called Lorbrena), those GI adverse effects got traded out for others (ridiculously high cholesterol, neuropathy, brain fog), but my appetite returned with a vengeance. Lorbrena, it seems, not only stimulates the appetite; it puts the brakes on both metabolism and the willpower/common sense part of the brain, making a person more inclined to impulsive behavior. As in eating ALL the cake. So all the weight I lost puking on Xalkori came back fast, and then some. And that's fine. I mean, I haven't had to buy an entire closet of new, bigger clothes or anything, but my skinny jeans are having a little rest right now, and I have recently pursued a more careful diet. (Not because I've bought into the patriarchal bullshit on body type, but because it's true that carrying extra weight is not exactly the best way to fight cancer.)

I continue, however, to eat all the cake in other ways: going out to hear live music more nights than I don't; waking up the next day in a house I love, next to someone I love, and who loves me back; sitting at a table with a bunch of writers finding the best words; sharing supper, stories, and gossip with a poet who has been a friend and mentor to me for nearly three decades; tasting the latest shaved fennel salad creation by one of my favorite chef-friends; discovering yet more people my step-daughter and I have in common; sending text messages bouncing off satellites and into the hands of dear ones to make them laugh; reading any old good thing that falls into my hands; going to weekday matinees, and to Mass; taking quick road trips to hang out with the gorgeous weirdos who are my friends (and eat cake); yakking too long and late into the night on the phone with the faraway friends; watching the spring blooms unfurl themselves against still-grey skies; and napping, napping, napping. And that's just in one week! These are just a few of the lovely things I thought would cease to be too soon when I learned I had metastatic disease. And I'm getting to do them all.

I teased my husband after he retired from over three decades of teaching by getting him some business cards that read John Mathenia, Bon Vivant. Now, I'd like to get a set for myself, perhaps adding the word "Grateful" to the title of Bon Vivant. Mostly I'm grateful because in those moments when I am busy eating all the cake, I'm not thinking about being a person with cancer.

Shift Happens

Shift happens, and so does stability. This post has a bit of of both.

First, let me start with what hasn't changed. I still have metastatic cancer. It is still, thankfully, as far as we can tell, inactive. At the end of January, I had clean scans for the third time in a row in my seven months on lorlatinib, which, by the way, got FDA approval and an official commercial name, Lorbrena, back in November. Blues fans may now sing an adapted version of "Corrine, Corrina" and do a grateful little happy dance with me!

The only problem with the new FDA-approved-legal-and-all status is that when a baby trial drug grows up and goes commercial, one can no longer get that drug for free. Well, lorlatinib wasn't exactly "free" to begin with, since I had to go all the way to Boston each month to fetch it home to Nashville. Of course I am grateful I had the means to participate in the clinical drug trial, and to have had some generous gifts to support me in making those trips to collect this life-saving medicine. But now, oh now, that we have finally gotten my insurance company to cover this "novel" treatment in an off-label prescription (let us recall that this drug is FDA-approved for ALK cancer, not ROS1), well NOW she comes with a BIG FAT monthly price tag and a BIG FAT co-pay. I'm going to write more about the high cost of cancer treatment in another post, so for today, let's just say that I am grateful certain drug manufacturers have "compassionate care" practices in place for regular folks like me, who don't happen to have a dragon's hoard of shiny stuff on hand.

Okay, clean scans, same drug, that's the stable part. Now for the shift. I RETIRED from teaching after spending most of my adult life in the classroom.

Yes, I'm too young to retire. I don't exactly have piles of money stashed away (see the above paragraph about paying for a super-expensive cancer treatment), but I keep telling people that if I happen to be lucky enough to outlive my puny retirement savings, that might actually be a good problem to have, ya know, as opposed to the other option.

Why, you may ask, did I decide to retire if I don't have much money and the cancer is stable? Actually, it's because the cancer is stable that I decided to retire, because it is stable for now. Metastatic ROS1 is a refractory cancer, which means it becomes increasingly resistant to treatment. It's true that some people with metastatic ROS1 have been able to stay stable on a single treatment since diagnosis, but many of us have not. I'm one of latter, on my second line of treatment. I'm hoping I can stay on it for a good long while, that the disease remains stable, and that I'll be allowed to live a relatively normal life for some years to come. I also know there are no guarantees, ever. So I chose time over money. Time to hang out in Florida visiting with loved ones. Time to do a bit of writing. Time to pray. Time to cook and eat delicious, body-and-soul nourishing food. Time to nap, because, as it turns out, having metastatic cancer and taking a potent medication to treat it every day is fucking exhausting.

Rest. What a good idea! It's not one our culture embraces, what with our Puritan work ethic and fetish for wealth. Right now, though, that's what's working for me. Time over money. I spent it on this recently: