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

 

This Is Just To Say

They have taken 

the scans
that were in
my care plan

and which
I was certainly
dreading
for weeks now

But bless me
they were amazing
so clear
and so NED.


Thanks to physician-poet William Carlos Williams (pictured here) for creating Every Poetry Teacher's classroom dream prompt for the instruction of imagery. And thanks to my care team at Tennessee Oncology, and to cancer researchers everywhere doing REAL SCIENCE right now, even in a social climate currently hostile to it.

For those who don't know it, here's a link to the WCW poem that inspired mine: This Is Just to Say

And, for those readers who'd like to know more about Williams, here's a link to a  biography/appreciation I found in, of all places, the Annals of Thoracic Surgery, while I was rummaging around for this picture of the poet, which accompanies the article. While there are lots of biographies of Williams floating around out there, I chose to share this one, written by another physician-scientist, Dr. Richard Carter, and published in 1999. Williams was himself primarily a pediatrician and obstetrician, so I'm not certain why a journal dedicated to thoracic surgery published this article about him unless it was for a thoracic oncology patient-poet like me to find for encouragement and inspiration some decades down the road. Even after being incapacitated by multiple strokes, Williams kept writing.

And what I mean to say most of all, is that I have been given the very fine gift of MORE TIME to be here with y'all, for which I am ever grateful.

Buzzed

In the past week on my social media accounts, I have added my voice to the shrill, to the complaining and impatient, to the fearful. We're all sounding the same notes. Yes, I'm a little afraid. I'm anxious. Like all y'all, I've been a bit cooped up in the days of COVID-19 and spring rains. We're also fretful about the well-being of the good folks we know who work in healthcare. All the very good advice out there on how to deal with isolation, summon equanimity, to live in the reality of pandemic times is, after all just, advice.

Yoga practice. Check. Going for walks. Check. Washing hands and staying home (except for solitary walks and the very occasional grocery forage), yes and yes. I'm catching up on reading, on those little projects around the house, etc., etc.

As a cancer patient, I've had some experience with social distance, keeping a low profile after infusion chemo, and I'd be lying if I didn't say that I kind of love it, at least without the infusion chemo part. It looks good on me. But I know it's awful for others who have lost work, who have had to adjust to working at home, who have to suddenly become school teachers to their kids AND figure out their economic lives. I know I'm fortunate to be able to work from home and not to have to worry about the educational well-being of little ones.

I'm not bored. Even scaled down and closed inside the four walls of my bungalow, my life manages to be over full and pretty content.

But there's a buzz I can't tune out. It's that conversation we're being forced to have, the one about who gets access to which resources. Who gets tested and who doesn't? Who gets treatment, and who doesn't? You've read and heard how the elderly, the "infirm", those with cancer or other serious illnesses find themselves among the unchosen, in respiratory failure and left to die so that those with more "prospects," the younger, the more "fit," get access to one of the too-few machines that could save a person's life. That buzz is so loud. It's a conversation too about the failure of policy, of the current administration's inability to understand and apply basic science in shaping a national response to our current circumstances. There's a recklessness in how the people in charge communicate, and an insidious divisiveness that spells out doom. I hear it even inside the brick and plaster walls of my cozy little house. It gets louder and louder and louder.

My health is good AND I have metastatic disease. I can say those things together because my last scans showed that I have no active cancer in my body, and I have no other acute illness at the moment. But my health is also fragile. Because my body is busy trying to keep the cancer suppressed with the help of daily oral chemo, and because I've undergone more aggressive treatment with chemo and radiation, I know my immune system is maybe not in tip-top shape. So, yes, I'm being super careful, and as I said before, mostly staying home.

NED. Clean scans. And I just had a birthday, my third since a Stage IV cancer diagnosis had me believing I might not last the year. My oncology team and I have worked hard to get me here. My health insurance has shelled out an awful lot of dough to keep me alive. While I love irony in a good book and appreciate satire in a late night monologue, I don't want to be the main character in a narrative that has me dying from the opportunistic infection of a little virus after pushing back a metastatic disease. I'm doing my part to stay safe. I just hope everyone else is too. Because that is all I've got.

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!

Hello, I'm NED!

Today's foot attire.

That's right friends! Ten months after being diagnosed with Stage IV metastatic lung cancer, nine months after having emergency heart surgery for a pericardial effusion caused by the cancer, and four months after being told I would need whole brain radiation to treat multiple tumors in my noggin, my most recent scans show NO EVIDENCE OF DISEASE. I have had a COMPLETE RESPONSE to LORLATINIB, a drug I have accessed through a clinical trial with Dr. Alice Shaw at Massachusetts General Hospital. So I'm not going to die of lung cancer any time soon. In fact, if I have a durable response (i.e. one that lasts years), something else might even get me first! In the meantime, I'm going to walk around alive and well and incredibly grateful for good science, a loving family, amazing friends, and all those who have put my name in their prayers, including some folks  I've never even met. All those things together have wrought this miracle, and I bow before them.

Even though it's a horrible thing to have cancer, and even though I had an awful setback in treatment in May, and even though I'll likely be having to treat this disease for the rest of my life, so many other things have gone right that I feel incredibly fortunate most of the time. Through a happy chain of events, I found myself in touch with the right people who had the right information at the right time to help me get access to this trial. I had the indispensable help of the ROS1ders, especially Patty, who was the first person with lung cancer to tell me I could survive it, and who is always just a phone call away. And in the couple of days back in May when I was having to make hard decisions about treatment, two of my best friends, Claudia and Rebel, swooped in to cheer me on. They urged me to pursue the trial and helped me gather and send off all the clinical records I needed to be considered for it, which involved some serious running around to multiple clinics in midtown Nashville on a hot day. It's great having your own personal cheering squad when you're terrified. Once I got to Boston, my sister Michele and two of my nieces met me and my husband John there, schlepping over on a long drive from New York after just having a long trip home from visiting me in Nashville! Another cheering squad to the rescue as John and I waited to learn if I could get in the trial. I did qualify, and that has meant monthly trips from Nashville to Boston, so again, I have been fortunate to have the resources and to have been given some generous gifts to fund my travel to Boston to follow the protocol. Not all cancer patients who could benefit from trials can get access because the sites are often far away and the cost of travel prohibitive.

So, science yes, but grace too.

And unconditional love and support from my husband John and stepdaughter Rachel for my decisions. Their good spirits, patience, generosity, and love have sustained me. Being a caregiver to someone with cancer is never easy, especially when that someone is ornery me.

What does all this mean for my prognosis? Well, I still actually have cancer. But now, we're treating it more like a chronic illness instead of a soon-to-be fatal one. Those of us in the lung cancer community know, though, that things can turn ugly quite suddenly, and no matter what the treatment plan is, we're always thinking about what could happen with the next set of scans. I'll keep taking lorlatinib for as long as it keeps the cancer pinned to the mat. If the disease gets a second wind and rises up, well, it just so happens I have a hook-up with a rock star cancer researcher in Boston who studies the disease's mechanisms of resistance to treatment, and she will, by then, have discovered more about what to do next. Those discoveries will benefit not just me, but so many others who have lung and other cancers that need to be treated at the molecular level. That, my friends, is why we have to keep pushing to make more funding available for lung cancer research. And one of these days, I'll quit pestering you for donations, because all those dollars you'll have contributed will have added up to a cure!