Monday, March 25, 2019

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, 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.

Wednesday, March 20, 2019

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 –

Saturday, March 2, 2019

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.

Tuesday, February 5, 2019

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:

Monday, December 10, 2018

Writing in the Past Tense

As he slowed down in his later years, my dad started spending more time in front of the television. Oh, he still puttered around the house, but more often than not, when I was home visiting, I'd find him dozing off in front of back-to-back episodes of American Pickers or Pawn Stars as the afternoon rolled over into evening. He liked TV in the mornings too, which always felt strange to me. The only time we had TV on in the mornings growing up was on Saturdays when we kids watched cartoons or Sundays when my dad watched the news-talk shows. But in Dad's later years, the TV came on early every day and pretty much stayed on. He usually woke before everyone else and started the coffee; I'd come downstairs a little later, pour myself a fresh cup of brew (he always made it weaker than I like) and go sit with him; we'd share out the measly sections of the ever-thinning Daily Freeman, talk about the demise of print journalism, and watch the chirpy hosts drink holiday cocktails on the morning talk shows.

Okay, that felt strange. My dad died only a week ago today, and already, I'm writing about him in the past tense.

In the week before he died, my 83-year-old dad had a heart attack. Then he had another. He was already a bit frail from some other health issues, and it turned out he had nearly total occlusions of three major vessels in his heart. He lived a few more days after we learned that, and we had hoped that he'd get stable enough to be a candidate for surgery. But he never did, and his terribly damaged heart could not be repaired. He passed away in the afternoon on December 3rd after being taken off of life-support devices that weren't doing him any good and that he didn't want.

On December 8th, the day after his funeral, I marked the one-year anniversary of my own catastrophic health episode – emergency surgery and hospitalization for a pericardial effusion caused by lung cancer. I almost died. This year, I lit a candle for my dad on that day, the Feast of the Immaculate Conception, in the parish church where I grew up. And I know that's how it's supposed to go, the child says a final farewell to the parent. And it almost happened the other way around, so I'm grateful for the grief, that I'm still here to carry it, and, I hope, to be of some use to my mom and sisters. But still, I miss my dad, his gravelly voice, his gruffness, his tender heart. It's Monday morning at my parents' house, my childhood home, and no one has made coffee. The TV isn't on. Yet.

I got to say a few words about my dad at his funeral, and I read one of my favorite poems, "Let Evening Come" by Jane Kenyon. My dad wasn't much for poetry, but I think he would have appreciated Kenyon's work. The imagery of this poem reminds me of our family farm out in the Catskills, a place my dad loved.

Anyway, here's what I said about my dad:

My dad was a handsome man. He looked great in a tux, and his smile dazzled. No wonder my mom decided to keep writing letters to the young Marine she met on that bus between Kingston and Albany so many years ago. We’re glad she did.

One of the earliest memories I have of my dad isn’t of him exactly, but of his voice, a little gravelly, a little gruff, coming to me across a darkened room. We’re watching some silent home movies my parents had made of themselves on a great American road trip they’d taken before any of us kids were born. Dad is narrating the footage of him at the rim of the Grand Canyon.  In the movie, he’d repeatedly walk up to the rim, look down and spread his arms as if he were getting ready to fly out over it; then he’d turn around, waving and smiling, walk toward the camera, and then walk daringly backwards toward the edge. “Don’t worry,” he’d say, as the movie projector chattered over my childish gasps. “I didn’t fall off.”

In addition to being a terrible kidder, my Dad was an artist. I know that might sound strange since we have no evidence, no paintings or sculptures, no mixed media.  But my dad was a champion sand castle builder. In the summers when our family was lucky enough to get a week’s vacation at Cape Cod, he’d spend much of a day digging with us in the sand until we’d built something impressive, a castle with a moat and towers or a pyramid that would rival the ancients.  At the end of the day, we’d walk away satisfied, not caring what the ocean would do.

You could say he was that way about the many small businesses he owned over the years. He’d build them from nothing into something kind of impressive; not big, exactly, or elaborate, but something that worked, that stood for awhile; then he’d let them go. He could never really work “for” someone; he needed autonomy to fulfill his own vision, like any artist.

Dad loved the Yankees, always, though he respected the Red Sox. His love for the Bronx Bombers is well-documented from his early days; in a photo album from his childhood, he kept an autographed photo of Joe DiMaggio, ticket stubs and a score card. When he and my mom were out and about doing things on a day the Yanks were playing, he’d remind her, sometimes to the point of annoyance, that they had to get home so he could watch the game.

But more than he loved the Yankees, my dad loved us. Always a soft-touch and perhaps overly generous with his daughters, tenderhearted and gentle, proud to be married to a well-educated and accomplished woman. And gosh did the two of them look great on the dance floor together at all those fabulous Italian weddings we had over the years. He cared for us all as best he could, and we’re grateful to be his family.

Thursday, November 22, 2018


This time last year, I wasn't so certain I'd be typing this post, but it is,Thanksgiving, one year out from a devastating cancer diagnosis. As John and I bustled around the kitchen this morning making a couple of Italian dishes to bring to the feast at our friends Tonia and J.P.'s house this afternoon, we kitchen-danced to whatever turned up on shuffle (everything from Roseanne Cash to Cake), and it felt .... normal. As in, a normal holiday. As in, here it is, a year out, and I'm dancing and cooking at the same time.

I could make a really long list of all the people and things for which I am incredibly grateful. But I'm gonna leave it right there. Dear ones. Dancing. Cooking. Thanksgiving. Flowers. A full moon. Breathing. One year out.

Saturday, November 17, 2018

Events Week for Lung Cancer Awareness Month

Misty Morning at Shelby Park
Today I met Monica Addington. Monica lost her father to lung cancer some years back, in the time before testing for genetic drivers, targeted therapies, and immunotherapies had become part of lung cancer diagnosis and treatment. She and her family and friends founded Lungevity's Nashville Breathe Deep Stache & Lash 5k/1.5 mile Run/Walk, and after several years of building the event, they passed the torch to the current organizing team, Erica Collins, Robert Pirtle, Tara Watson, and me. My organizing teammates, who have been involved with the race since its early days, also have each lost someone to lung cancer, and Robert, like me, is a cancer survivor.

After the race on this cold and foggy morning, I was invited to say a few words to the participants. I hope I did a good job expressing my gratitude to everyone there. I wanted them to know that it is because of them, because of their support and their hope, that I and Robert and other lung cancer patients have been the direct beneficiaries of lung cancer research.
The Lit Wits! My friends and colleagues from Vol State. They have supported me like family!
Erica and Tara
Robert and family.
Afterwards, Monica introduced herself to me. Both of us were pretty emotional as she told me how much it meant to her to see someone like me, someone like Robert, there at the event, people with advanced stage cancer who are living normal lives. And that's one of the amazing things about research now; it's moving more quickly at last, and therapies that were not available just a few years ago have since been developed and are having a huge impact. We still don't have a cure for all lung cancers, but we are moving toward one every day, with the help of all the donors, the walkers, the organizers, the sponsors, the foundation folks.

Monica, who lost her dad not so very long ago, and all the current organizers have worked to make hope a reality for people diagnosed with lung cancer. And those efforts are beginning to pay off as we finally see more progress being made. I say this over and over again – lung cancer kills more people in the U.S. than any other cancer, and yet lung cancer research receives only 6% of federal cancer research funding. So it is up to foundations like Lungevity and the Bonnie J. Addario Lung Cancer Foundation to make up the difference.

Addario Dinner
Addario Dinner
Today so many people: my family, my wonderful friends and work colleagues from Vol State, my new friends from Lungevity Erica, Tara, and Robert and their families, our donors and supporters and other walkers, and I put our energy into a Lungevity event. Early this week, we had an event for the Addario Foundation, a beautiful fundraising dinner and silent auction at Lyra, one of our most favorite restaurants in Nashville, owned by our lovely friends Chef Hrant Arakelian and his wife Liz. Hrant created a delicious, generous, multi-course menu for our party of eighteen. The Middle Eastern, Mediterranean dishes and the wine just kept on coming, and everyone could taste the love. We also had silent auction donations from family, friends, and local businesses. The proceeds from the dinner and silent auction will go to Addario's Global ROS1 Initiative. Once again we were supported by loved ones and friends from work and from the poetry and philanthropy communities. Thank you dear ones! Readers, if you are in Nashville, go eat at Lyra the next chance you have! You will love it!

All in all, it has been a week of community gatherings in the cause of lung cancer research. I stand in awe of the support everyone has shown us! John and I are both pretty exhausted, but happy to have been a part of making a contribution to the cause.
Menu from Addario Dinner

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...