Geese and Gratitude

Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.

                    Mary Oliver, "Wild Geese"

It snowed today. And got dark at 4:30. It will get darker for longer each day until December 21, Winter Solstice. I actually love late autumn—the grackles, winter's voice clacking in the trees, that brace of frigid air, the grey skies and foreboding of early-darkening days mixed with hope, the anticipation of light's return. November strips the last of the foliage off, and there they are—the squirrels' nests and mistletoe, the deer in the wood, the formerly hidden bungalow at the end of the lane, the orange berries on tough green bittersweet vines, the red on waxy holly. Yes, darkness, but also, revelation, evergreen, and bright spots of color. The season's bleak beauty has an archetypal narrative arc that resonates pretty deeply with my own temperament.

While I was walking through the neighborhood yesterday, I saw someone had painted the entire text of Mary Oliver's poem "Wild Geese" on a piece of wood and propped it up in their front yard for all to read and love. It's one of the best poems ever, and you can read it here if you don't already know it. I don't know who lives in this house, but I wanted to go up to this neighbor's front door and knock, and when they came out, I would have bear-hugged them and kissed them on the mouth, and said "Yes! Yes! Thank you for reminding me how beautiful this world can be, full of poetry and ordinary glories!" For obvious pandemicky and politeness reasons, I did not, but the yard poem is one of the things for which I am incredibly grateful this month.

This November has been blurry, no—I've been unfocused, vaguely fretful, an emotional mish-mosh of gratitude and wistfulness, and, yesterday, I was overcome with a kind of keening nostalgia brought on by over-exposure to Christmas lights in cozy windows during a walkabout on a cloudy day. Each day I set an intention (put up some damn decorations, write that letter, respond to so-and-so's email, finish editing that chapter, write those portfolio comments) and fail to follow it. I set another the next day and get halfway. My actions seem to trail off into broken sentences and half-formed thoughts. 

What the heck is wrong? 

Nothing.

It's been a year since I finished four rounds of infusion chemo and more brain radiation than I care to consider, and I still take oral chemo every day. Metastatic cancer patients are always waiting for that other shoe to fall, so nothing new there. I've been well through all of it, more or less, in this overall shitty year for everything else besides my body, with my disease remaining stable. Still, I'm probably about as depressed as the next person because of the pandemic. I admit that I got a little too obsessed with the election, but that's over now, and I've more or less detached from things political (except for the Georgia runoff) because they make me too crazy.

I'm okay. I have scans next week. I remain hopeful. So there it is, melancholy for no reason. 

Things I neglected this past month:

• Lung Cancer Awareness Month (I did a little lung cancer fundraiser in October, so I didn't think I should ask people for money again, times are tough, etc., and I was so sick of social media after the election that I just couldn't...I don't know...make the ask, again)
• Correspondence (email, letters, texts, thank you notes, etc., I promise I am not ignoring you; I'm just...ignoring everyone.)
• Diet (not gonna bore you with the details...just...ya know...way.too.heavy, thanks lorlatinib)
• Work (said yes to every likely project while still not finishing ones already in line)
• Fill in the blank (pretty sure I've left lots of things off the list, but you can let me know)

Good things that happened in November:

• Thanksgiving (a favorite holiday)
• Mom's birthday
• I finished editing a memoir by my friend Seth Walker, which is available for pre-order here:Your Van Is On Fire
• I've made progress editing another book on a really interesting and surprising aspect of Civil War history written by a gentlemen here in Middle Tennessee, and which I hope will be published in the coming year.
• I set up my fundraising page for the ROS1ders, to collect donations for research projects we have a direct hand in creating. I'd love for you to check it out and give us some $$$$ for research.
• I got to be featured in a video about lung cancer for a series that should run on WebMD in January.
• I put up some Christmas lights yesterday and got an Advent reader in the mail. John got me a little house-plant pine (Norfolk Island Pine) to decorate (we don't go in for cutting down live trees), and some poinsettias for the living room. So yay for summoning holiday spirit even though we're all so fucking depressed.

December Hopes:

• Raise more money for lung cancer research
• Good scans, stable disease (NED)
• Finish all editing projects for the year
• Finish all portfolio assessment work for the year
• Begin putting a poetry collection together
• Make some art
• Celebrate Hanukkah-Solstice-Christmas-Kwanzaa-NewYear's with joy and hope
• Keep showing up when I remember where I'm supposed to be

 

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.

The Incredible Dangling Woman

A year ago you get a phone call confirming all the suspicions. Adenocarcinoma. Lung cancer. What? How? You don't even smoke! You spiral for a bit, round and down into some seething, dark emotional pit. You dangle there in the unknown, learning the hard way (your favorite way) how nothing is certain, nothing given. No matter how hard you try to google yourself to a Ph.D. in Stage IV lung cancer, no matter how many databases you ransack for the cure, the answer is only this: you will die from this disease, probably sooner rather than later.

One morning you wake up and can barely breathe, and you think, huh, guess it's gonna be sooner. But it's not. After emergency surgery to drain the cancerous, suffocating fluid from around your heart, you start actual treatment a whole month after diagnosis, a month spent waiting for genetic clues from three different biopsies to match you to the right thing. This treatment, a pill you take twice a day, is the only FDA-approved treatment for your type of cancer, which has a rare genetic driver; only 1-2% of lung cancer patients have it, typically non-smokers. For the first time in your life, you are in the 1%. Haha. You've won the cancer lottery. And it's miraculous, because there is something for it, not a cure, but a treatment that will keep the cancer from growing, hold it in check. The treatment makes you sick as hell at first, but after a few months, it's not so bad. And it works. For a few more months. Then it doesn't. 

The tumors that were shrinking are growing again and OMG! The cancer is in your brain now! And there you are, dangling over what's next. The radiation oncologist tells you that it's going to be sooner rather than later if you don't do something, like whole brain radiation. You read up on it, and you read the studies about how whole brain radiation doesn't always work for your type of cancer, how it damages the brain, and how the cancer just comes back anyway, almost right away sometimes. You'd be buying time, but what kind of time? So you decide to skip it, even if that means sooner rather than later. 

Instead, you keep scrolling on Clinicaltrials.gov, and you call your friend who has been in the exact same situation. She tells you to go see her famous doctor and get in her clinical trial in Boston. Friends and other fellow cancer patients tell you the same. You fly to Boston, get in the trial, start a new treatment, a breakthrough medicine. It's not a cure, but an inhibitor, like the first treatment, but better, more potent. It's amazing! After a few months you have no evidence of disease; you are NED! There is still cancer in your body, but only at the molecular level, and the medicine keeps it from making tumors. Isn't that brilliant? You have no tumors! For now. For a long while you hope. You are grateful, incredibly, profoundly grateful. To science, to the doctors, to the lab mice, to your family, to your friends, to all the other lung cancer patients in your on-line support group, to all those people who put your name on the breath of their prayers. Even if your brain is a little slower and your neuropathic fingers don't work so well, those people love you, and you are glad for the gift of time you've been given to hang out with them. You look forward to more holidays, more birthdays, more coffee and lunch dates, more hikes, more seasons, more books to read, more music to hear, more cake to eat. More. More. Please, sir, you want some more.

But you are still dangling. You are the incredible dangling woman, one of many incredible dangling women and men who have ROS1+ metastatic lung cancer. Or any kind of advanced stage, incurable cancer, really. Like all of them you are dangling over the cutting edge of cancer research, for it is truly the edge, and you can't quite see what air your toes are kicking in or what is below, but you know it's there, and you are doing fine, for now. You are not out of options. Yet. You are on the cusp of something, praying the science will outpace the disease, that you will not fall off the cutting edge before there is something else to catch you. But you read the blogs, and you're on Facebook, and you know people, now, "in the cancer community", and you read all the posts from the ones who are doing fine. Then they aren't. Then a loved one posts the news instead, and it isn't good. In any other semantic universe, the word "progression" would be a good thing, some musical chords shifting, your game pieces moving across a board. But when it's in Cancerlandese, as in "progression of disease", well, will it be sooner or later?

And you have lived now a year and a day knowing what disease you have, knowing that you have beat some odds. You don't know what it means. You don't know what anything means except that you have made it, panting, to this edge. And it is rimmed with love, all those people reaching to hold you there, to pull you up. They go with you to scans, endless appointments, and hear the news, good or bad, with you. They send you tiny, funny letters in the mail, drive four hours across two states in the rain to see you in your basement studio digs in Brookline. They send you money and airline tickets and good wishes and thoughtful gifts, take trains to you through the darkness to meet you early, early. They sleep on awful cots in the hospital to be next to you, fetch you real food instead of that hospital swill, and keep everyone in the loop. They wake up every day beside you, make you coffee or tea, listen to you fret, soothe you, take you out to a show, a nice dinner. They make you eat kale (or drink it in beet smoothies). They restore you with yoga. They help you collect and organize your many medical records and hook you up with a saint-to-be for intercession. They ask all their friends what to do for you, offer cannabis and cleanses, and company. They raise funds for research and pick up your slack at work, text you with poems and prayers and blessings, with in-jokes and irony. They read your shitty, whining blog posts and like your pictures on Instagram. They let you be cancer girl, or not, whichever suits you. They lift you up in prayer. They are tender and strong, and you are puny and amazed in the light of such kindness,  such grace, such mercy. They are there with you, at the edge, not letting go, all of you crying more, all of us every day crying please, sir, I want some more!

I Have These Conversations

Every once in awhile I find myself in a conversation about cancer with someone who, upon learning my diagnosis, holds forth on the elaborate big pharma conspiracy to hide the cure for cancer so that we'll all have to keep paying for expensive treatments that only make us sicker. I'm told, for instance, that studies on intravenous use of Vitamin C to cure cancer have been suppressed (they haven't been; I've read them) because they prove that this simple technique cures cancer (it doesn't) and would put big pharma out of business (it won't). Oh, and it's not just big pharma, I'm told, that is part of the conspiracy to keep the cure away from patsies like us desperate cancer patients who show up for clinical trials, scans, chemo, radiation, targeted treatments, immuno-therapies, and surgeries. In fact, as my would-be enlightener will point out, the entire medical establishment aims at keeping us all sick unto death for the sake of profit.

And I get it. Greed is ever-present, and no industry chugging along in a capitalist culture is immune from tendencies toward profiteering. (Which is why, by the way, we might want to give more scrutiny to the fact that we encourage for-profit models in areas like health care, elder care, day care, education, and other efforts on behalf of the greater good, but that is another argument for another day.) Yes, there have been plenty of scandals involving the pharmaceutical industry, and yes, many hospitals, clinics, and ERs are full of repeat customers because treatments have poor outcomes due to myriad failures in the way we, as a culture, practice medicine and view wellness. Bureaucracy, over-regulation, under-regulation, terrible communication, and outright incompetence seem to prevail and offer us good reasons to distrust the health care industry. The inequities built into our health care system alone make it a scandal, and ethical questions about clinical trials and treatment development abound.

But working both inside and outside that entirely dysfuntional machine are some pretty dedicated cancer researchers who, if they could find a panacea for all cancer, would gladly wash out their petri dishes and turn their time and talents to other useful things. So here's what I have to say to the tipsy party guest who regaled me with his cancer-cure conspiracy theories a few nights ago. Read the actual medical literature. Go to a few cancer conferences like those sponsored by ASCO  or to patient summits like those offered by The Lungevity Foundation. Talk to some researchers. Talk to more patients like me who participate in clinical trials. See what research projects non-profit foundations are funding. Visit a patient advocacy site like The ROS1ders. Cruise the listings on ClinicalTrials.gov hoping for a miracle cure. Learn that "cancer" isn't one thing, that its cure will never be found in one silver bullet or in prevention-only strategies, but rather in each data point collected, each pattern detected, each genetic code cracked.  Cancer research is a molecular, genetics, big data long game now. And if you, dear reader, know someone spouting ill-informed notions about the Great Cancer Cure Conspiracy, suggest that what that person is doing, rather than enlightening anyone, is diminishing the existing and ongoing research that really is curing cancer, one clinical trial and one patient at a time.

The Money Thermometer

I wanted to write some sort of witty post that would make readers laugh and set everyone at ease so I could ask you all for money. (I promise it's not for me. Well actually it is, sort of, but I'll get to that.) Anyway, as I tried to write that witty, magic, purse-and-wallet-opening post, every pathology I've ever developed from my semi-abusive, co-dependent relationship with capitalism and the free-market economy came crashing down on my psyche, and all I could think about was the money thermometer. You know, those thermometer illustrations non-profit organizations use to show how their fund drives are going?  Well, I started imagining what one would look like showing off my fundraising efforts for lung cancer research, and it was kind of embarrassing.

Oh, you didn't know I was raising money for lung cancer research? Hmmm, that might explain why my imaginary money thermometer is recording sub-zero temperatures.

So I guess I'd better get on it, right? I know, I know...so many worthy causes out there! How does one choose? For me, this year, the choice was easy and obvious. In fact, it wasn't even a choice; it was a directive.

I am a direct beneficiary of on-going lung cancer research. In May of 2018, I learned my first-line, standard-of-care treatment failed, and the lung cancer that had been kept in check by crizotinib had mutated, gotten loose, and had metastasized to my brain.  Thankfully, I was fortunate enough to enter a clinical trial for a breakthrough targeted therapy that has gotten the metastatic disease under control. In May, I didn't know if I would live through the summer. This week, I gratefully went back to my teaching job. While the doctors don't know exactly how long this new treatment will keep the cancer in check (average progression-free-survival on lorlatinib is around 20 months), and we don't know yet what my next line of treatment will be, I remain optimistic that, with the help of continued research funding, the science will outpace the disease. (Fingers and toes crossed and prayers for clean September scans please!) I'm lucky. There is actually more than one line of treatment for my type of lung cancer. Many other lung cancer patients have even more limited options than I do!*

As I've noted here before, lung cancer is one of the most deadly cancers, one of the most stigmatized, and, as a result, one of the least funded in terms of research. Science has made some amazing advances in treatment in the last decade with new immunotherapies and targeted therapies, but more people are still dying from lung cancer than they are from breast, colorectal, and prostate cancers combined. Did you know that breast cancer has a 90% five-year survival rate? That's due to substantial early detection practices and decades of generous and reliable research funding. The five-year survival rate for lung cancer is 18% if detected early. See more interesting statistics here: Lung Cancer Facts.

So if you didn't know it before, you know it now. I'm raising money for lung cancer research. As long as I live or until there is a cure, I will be raising money for lung cancer research. I'll try not to be too obnoxious about it. But I'm going to ask. And ask. And ask. And if you don't feel you can help this time, that's totally okay. I'll ask again. And again. There will be ample opportunity. And when the spirit moves you at last, you can help by donating to one of the projects listed here: Giving to Research. I don't have any material incentive to offer, other than the tax breaks my particular pet projects bring you. There's no swag. No one will say your name on the radio or TV. But you'll know what you did. And what you did, it's real good, my friend, real good! You don't need a money thermometer to tell you that.

*In memory of my classmate, Renee Nasby Baker, who lost her life to lung cancer.