Just January

January lays me out. In Nashville we get a few bright days, but mostly the skies are overcast, and darkness still comes too early for me. We do too much sitting and looking at screens. It's too cold to do much outdoors. And the sedentariness has been made worse with omicron COVID tearing through town, so that I avoid my usual indoor haunts, like the gym and the stupidly crowded nightclubs. But I still somehow talked myself into getting on an airplane to go a-visiting. I know, I know...there is all kinds of denial happening in that choice. But I had to go. To shake the drearies. So, I dashed off for a few sunny days in Tucson with friends Claudia & Bruce, then high-tailed it to the sunny (and cold, but still warmer than Nashville) arid cusp of the High Sierra in Reno to visit sister Amy, leaving John to tend the dogs and other household doings. I've managed to get some little bit of work done on cancer-advocacy projects, about which I'll say more when the things are actually finished and up and running. 

So, not much news at the moment, other than to say sometimes one needs a break from the dullness of winter, though I'd hate to admit my snowbirdism when I already, technically, live in the American South! February is nigh, with a Nashville spring not far behind. This week I'm back to work in a busier way, grateful for this hiatus which took me to a rock/gem show (outdoors under tents) in Tucson and along the Truckee River in Reno. I'm still floating on December's good scan news, and keep thoughts of April scans pushed back in the darker crevices of thought so as to stay focused on these happy bright days in the west.

Tucson Rocks & Gems

Truckee River Looking West

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: