Saturday, November 9, 2019

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.

Wednesday, October 30, 2019

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!

Thursday, October 17, 2019

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.

Wednesday, October 2, 2019

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.

Thursday, August 29, 2019

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.

Saturday, August 24, 2019

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. 

Monday, July 15, 2019

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.

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 pot...