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.

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: