RIP Spot

So it really happened; li'l Spot, the latest tumor to take up residence in my body, got treated with radiation last week. Three rounds, one each on Monday, Wednesday, and Friday. I'm not sure whose ass got more kicked, mine or li'l Spot's. Hope it was Spot's. Sorry, not sorry Spot.

Side effects? Oh hell yes! Ya don't take a bajillion grays of radiation with no after-effects (okay, probably exaggerating there about the amount of grays). I mean, just look at all the Marvel and D.C. superheroes who have tangled with radiation and were in many ways better for it, if more Byronic! But, my side effects haven't been nearly as glamorous as theirs. Just some nausea and some deep fatigue – profound fatigue like I've never known, like the flu only hints at. And three days out from my final treatment, my ass remains kicked, which is why it's taken me so long to get to this post. (Side note to those who saw me out at The 5 Spot on Saturday...who can resist Raygun doing all those great punk covers with Pete Pulkrabek on drums? Notice I had to sit down the whole time, no dancing, and I was drinking seltzer.)

If you haven't had radiation, I hope you never have to, unless you get some real superpowers from it. The treatment itself is not horrible; heck, you don't even feel the gamma rays going in from the giant robotic radiation shooter. It's what comes after – the nausea, unimaginable fatigue, and foreboding sense of DOOM – that I wouldn't wish on anyone. The greenish-blue glow is kind of cool though,

but I don't think they'll let me in The Turnip Truck let alone  touch the produce looking like this.

Anyway, the anti-nausea drug has kept the worst of the pukey side effects in check; the only really bad day for nausea was Wednesday. And yes, I'm sleeping LOTS, probably an average of 12-16 hours if we count all the naps. When I'm awake, I seem to be in some kind of post-radiation funk of mild depression and confusion at losing a whole week.

In Cancerland, people with metastatic disease are always talking about "the new normal," how so much of a cancer patient's life starts to bend itself around this disease, how we do things to our bodies (like getting shot full of gamma rays) we'd never dreamed of just to get a few more years or months with our dear ones. Radiation is one of the many crazy things we do for no other reason than we want more of everything: more birthdays, more pizza, more trips to the beach, more love. But what good is that "more" if it's full of fear and worry?

I spent a frustrating two months trying to get treatment lined up, at one point giving myself such an anxiety attack I didn't want to leave my house. Shortly after those terrible few days of my being an anxious, agoraphobic ball of helpless, writhing paralysis, things began falling into place, and a treatment plan emerged. But it wouldn't have if I hadn't persisted and if I hadn't had the help of another lung cancer survivor, my rescuing angel Patty Watkins. I had to focus. And it was not what I wanted to do.

What I wanted to do was forget I have metastatic cancer. I mean, I can't feel the tumor. It's too small to cause any discomfort. And I didn't love the idea of pouring toxic radiation into my body on top of the already toxic oral chemotherapy I take daily. Maybe I should just have forgotten the whole business. Another person whose blog I follow, Linnea Olson, has recently written about "forgetting" her cancer for a few months, and the fact that she's out of treatment options after fourteen years of survival with ALK+ lung cancer. To help her with "forgetting" she took a long trip to Italy, and, guess what? The disease showed up as stable (no progression) in her scans afterward. Maybe that would have worked for me. (Hi Italy! I miss you! Hope to visit you soon!)

But that's not what I chose, this time, because unlike Linnea, I still have some treatment options left. Getting Li'l Spot zapped before he got to be a bigger Spot, or multiple Spots in other places, was the right thing to do. It's not a permanent solution to my situation, but there isn't one, right now, since this cancer can't be cured, yet. Sure the disease will probably rear its ugly head again in the future, though we hope with the help of the gamma rays not for a long time, whatever "long time" is in Cancerland. My choice to go with radiation is not a decision I regret. There's good, scientific evidence that this type of treatment works well for patients in my position, at least for awhile. What I do regret is the fact that I let my anxiety about treatment, about the disease, about judgement for how I handled my treatment, and (perpetually) my anxiety about my next set of scans get in the way of my joy. I can't say that will never happen again, but I'm going to try much harder not to let the disease rule my will or steal my joy. 

RIP Spot. Long live Gamma Girl.

The Story of Spot and a Study

It's called disease progression, and apparently I have it once again. So says the Spot on my April CT scan, a Spot which also appeared in the same place on a PET scan in May. A biopsy last week confirmed that said Spot is metastatic. Bad Spot. Go away Spot, go.

Currently, Spot is hanging out in a lymph node on the left side of my back just below my kidney, or, to put it medically, I have metastatic lymphadenopathy in a retroperitoneal periaortic node. No biggie. It's just a little stray cancer trying to find a forever home in my body. But it looks like I am going to have to put old Spot down. Quite possibly with a high dose of radiation if an increased dose of lorlatinib, my current treatment, is not indicated or likely to be effective.

The worst part of all the recent cancer doings has been the waiting. There are appointments. There are tests. There are days between tests and appointments. Then there are more tests. Then more appointments. I've known about the potential progression since early May, but it wasn't until Monday of this week that I got definitive confirmation. As of today, we (me and the docs) still don't have a treatment plan in place because we're doing a couple MORE tests to see if the cancer has developed any new targetable mutations; then there will likely be a few more medical professional consults, so, more waiting. Sigh. I KNOW! It's SOOOO frustrating! I mean we're talking about metastatic cancer, which means it's growing, albeit fairly slowly (we hope) and, well, YIKES. This aggravatingly super slow pace of arriving at a new treatment plan isn't helping me feel better about my situation, but it seems to be typical of life in Cancerland.

So, the shitty disease is no longer stable, and I've lost my coveted NED status. BUT there are silver linings. Nope, just kidding, there aren't. Metastatic lung cancer is a stone-cold killer, and there's still no cure. If you have it, the disease will fuck with you in all sorts of terrible ways, and eventually, because it can't be cured, it will put you in your grave; that's it's M.O. I've seen it do just that to other folks. Just sayin', the terror is real, and research funding for the much-stigmatized lung cancer is scant.

So, in lieu of silver linings, here are a couple points of gratitude. First, my brain MRI shows there has not been progression to the mothership of my central nervous system, so far, so good there. Secondly, because I had a CT-guided biospy, and because the interventional radiologist who did it was able to harvest a bit of extra tissue, I am able to participate in the ROS1 PDX Research Project which is trying to develop more ROS1 cell lines for study. Right now research on ROS1-driven lung cancer is proceeding very slowly because we don't have enough mouse models to study the disease. That's because only about one percent of people diagnosed with lung cancer have tumors driven by the ROS1 genetic rearrangement. So eligible ROS1 patients are encouraged to donate tissue to the study whenever they have a procedure like a biopsy or other surgery that could yield a viable specimen. It's sort of your ultimate DIY life-saving science project. PETA friends will be horrified to know that four potential mouse models were created by my metastatic biopsy tissue donation, poor mice. Me, I'm kind of excited about the research possibilities, though I admit to feeling pretty badly about the fuzzy li'l critters. (Moment of silence here.) Thank you for your service and your sacrifice, dear little rodents.

Hey, so you knew I was going to ask, but if you want to help support this ongoing ROS1 research that could potentially lead to a CURE, now would be the time to donate to my ROS1 Research fundraiser with the GO2 Foundation for Lung Cancer (formerly the Bonnie J. Addario Lung Cancer Foundation). The findings from this study may have the potential to change treatment for other oncogene-driven cancers as well, with broader implications for cancer treatment overall. Since I donated my own living metastatic tissue to the study through a somewhat painful biopsy procedure, maybe a few readers could spare a few bucks as a kind of matching grant? Okay, that's a little gross, but you get my point.

And despite all my whining and complaining, I am doing my best to maintain a posture of gratitude and to keep the faith.