Monday, July 15, 2019

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.

Wednesday, July 3, 2019

I Will Believe It When It Happens

And so, just over two months since my li'l tumor, Spot, was discovered by CT scan, I've got a date with the gamma knife to zap him out. Three dates, actually. Next week on Monday, Wednesday, and Friday mornings, my rad-onc is gonna kick Spot's li'l butt with her light saber. So far, we've gotten the insurance folks to play along, so let's hope it stays that way. Fingers crossed. Very, very grateful that I finally get to go see the woman with the power tools next week. It has taken a long time to get here, too long according to some medical professionals I happen to know. We're going to take a look at the root causes of delay in hopes that it doesn't happen to someone else.

Thankfully, I still feel quite well, with no real pain or symptoms from the tumor. I'm only dealing with that pesky anxiety that all metastatic cancer patients live with every day, wondering what each new scan result will bring. I'll know more about that at the end of July.

I hope this fancy and expensive treatment will keep disease progression under control for a good long while. I'm lucky to live where I have access to it and to have health insurance that will cover most of the cost. I think. So they say. At the moment. Okay, so I have trust issues when it comes to bureaucracies. I think that's pretty healthy.

Inappropriate Happiness

When I started chemo back at the end of September, the nurse giving my first round of infusions was required to read aloud to me all the pot...