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.

Having a Moment Here (and Now)

The god of dirt
came up to me many times and said
so many wise and delectable things, I lay
on the grass listening
to his dog voice,
crow voice
frog voice; now,
he said, and now,
and never once mentioned forever
                      --Mary Oliver

I turned thirty years old standing on a bridge in Yoyogi Park in Tokyo. It was a Sunday, and on the concourse below, bands were playing, lots of them. Rock-a-Billy. Punk. Metal. Thrash. 60's Covers. You name it. There were at least 30 bands jamming away. All at once. Each with varying degree of expertise and talent, all with much enthusiasm. And people were dancing, or at least moving their bodies in interesting ways, with fans of particular bands dressed in the same style as their pals on stage (punk-a-billy was by far the most popular ). This exuberant display of organized rebellion happened every Sunday, the guidebooks said. Young Tokyo-ites would pile all their gear -- guitars, drums, generators – onto the subway, emerge at Harajuku Station, and set up one band right next to or across from another, creating a corridor of sound at this particular spot in Yoyogi Koen. It. Was. Amazing. And really, really loud, so loud the cherry blossoms shook. Well, maybe that was wind, but still, loud.

I was pleasantly surprised to be suddenly thirty and living in such a country, where I happened to be teaching English to rich housewives and corporate executives. It's not that thirty was a big deal; it wasn't. I hadn't accomplished anything in my life at that point, really, and was sort of hiding out in Japan from embarrassment. I didn't own a house, had no kids, no spouse (are those accomplishments? hmmm), no prospects, and no clue what I was doing. I'd squandered my twenties on pub crawls and college with not much to show for it. But I remember that moment on the bridge as one in which I was particularly glad to be alive, and walking through that crazy, joyful corridor-o-sound that day had made me even more glad.

With thirty a long way behind me now, I still feel that way about my life,
glad and grateful to be in it, moment to moment. And I feel that way especially when I go out to hear live music with my family, something I get to do a lot of in Nashville. For instance, this past week, my sweet step-daughter took us to see one of our favorite San Francisco artists, Chuck Prophet, with his band The Mission Express. They played at a small club not far from my house, and I spent the entire show being really, really happy. Also, Chuck was wearing a Waylon Jennings t-shirt, so bonus happy there.

And, I got to feel that way again yesterday when I got the report on my new set of scans. It was a really good report. It said that there is no visible cancer in my lungs, that all the tumors that were there are gone. It said that the constellation of tumors in my brain has gone mostly dark, except for one little 2 millimeter spot.  It said that spot was there on the last scan too, but it hasn't gotten any bigger. So basically, I have 2 millimeters of visible cancer in my body. And I think there's a good chance that 2 millimeters will disappear with continued treatment on lorlatinib. We'll find out with the next set of scans, but I am wildly optimistic. And it's funny to be happy about the fact that I have 2 millimeters of cancer, isn't it? I mean who else would be happy about having any cancer at all? Still, 2 millimeters feels like a win to me. But that win isn't mine. It goes to the researchers who created this medicine. It goes to all who have prayed for me and wished me well, and to the one to whom you have offered those prayers. I take every breath with gratitude.

So, is my cancer nearly cured? Not exactly. I still have stage IV metastatic disease. And that disease can rear its ugly head any time it decides to become resistant to treatment. But lorlatinib is a really potent treatment, and right now, it's working. So I'm having a moment here. And it's a pretty fucking great one!