The Case of the Disappearing Spots*

When I went to the clinic yesterday for what I thought was going to be the first of four CyberKnife procedures, it turned out they had me scheduled for only one procedure. What? But when I'd gone for the consult a few weeks ago, the rad onc told me it looked like I had four cancer spots on my brain and that I'd probably need four sessions, one to treat each spot. Nope! Much better news! It turns out that on closer inspection with the super-duper stereotactic brain radiation planning MRI in August, my lovely rad onc was able to see only two li'l spots in my noggin instead of the original four we thought were there back in July, so she was able to zap both li'l spots (which, she is certain, were indeed cancerous lesions) in the same session. But what happened to the other two spots? The good doc suspected that they had perhaps resolved on their own and might just have been enlarged blood vessels. Whatever the reason, I'm glad and deeply grateful they are both gone, and I'm glad the two remaining spots got zapped and are curling up to die as I write. 

Today I am tired and dizzy, and my face is a big fat full moon from the steroids I have to take to keep my hot mess of a brain from swelling, but I am finished, after one treatment, with brain radiation. Now for some rest.

Here's the upshot regarding prognosis -- I am likely never going to be "cancer-free" unless research really speeds up a lot and the brilliant minds find the miracle cure. I've known that since the beginning. I had been very hopeful that I would get more time on the two inhibitors we've tried, as other patients have gotten years on both crizotinib and lorlatinib. That still could happen with lorlatinib with help from radiation and chemo, but my cancer sure does like to mutate quickly, so we'll see.

I really do hold stock in what my first onc, Dr. Peacock, had to say when I was first diagnosed: "We're hoping to treat metastatic cancer as a chronic condition, and we're hoping the research outpaces the disease." Where the research is leading now is in the direction of personalized, genetically tailored treatments (vaccines), immunotherapies, targeted therapies, and combination treatments like the one I am trying (targeted therapy (loraltinib) + radiation + chemo). My new onc, Dr. Johnson, works on the cutting edge, right where I am disease-wise. So I remain hopeful that if we nip and tuck these pesky pop-ups, and I maintain a healthy lifestyle, I'll be able to live a long time with this rude little cancer gangster doing life in inhibitor prison. Maybe one day it will disappear like those two spots.

*This content is adapted from a CaringBridge post which goes into more detail about upcoming treatment, so if you want to see that you can visit Leslie's CaringBridge journal.

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.

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.

My Bad. Or, Another Personal Essay Meditating, in Part, on the National Health Care Crisis, with Opinions Based on the Tedious Author's Experience, and Accompanied by Much Whining and Complaining

(This post is adapted and tidied up from one I included on my Caring Bridge Blog recently.)

Never assume anything. Like the fact that a referral to a provider within the same medical oncology group is to a provider who is "in network" for insurance. Because if you do assume, bad things will happen, even if you are one of the lucky ones.

Por ejemplo: Last week I was thrilled to have finally landed a consult with a wonderful radiation oncologist, one of the tops in town, who happened to have an opening when others who could treat me did not, and I got scheduled for a planning meeting for this very week! This good fortune befell me after nearly two months of waiting. And of course, any fool with good fortune knows that one must always check out the insurance situation when facing a super costly treatment. But yours truly, Assumptions Woman, did not: 1) because once Assumptions Woman signed up with this oncology group, the providers' offices did all the legwork of approvals, so Assumptions Woman had never had to check about insurance for individual providers in this group for past treatment; it just got handled by them, which was lovely and is no longer the case, and 2) because Assumptions Woman was freaking out as it had been some 50 days since her unruly Spot had been found, and she was so damn happy that she had finally gotten an appointment with a radiation oncologist, she didn't bother to ask if the rad onc was "in network."

My bad. Turns out she's not, of course. And it turns out the email regarding that fact and denying her service to me came to her office AFTER I drank her barium shake and was IN THE PLANNING CT machine and the pleasantly chatty techs were marking little X's on my body so that we could line up all the radiation beams correctly when I went in for actual treatment on July 8 as scheduled.

Every other procedure I have ever had in relation to this disease (except emergency surgery for a pericardial effusion) was pre-approved by my insurance before I could even so much as walk in the door of a clinic; I mean I couldn't even have a kleenex to blow my nose without the providers asking the insurance gods for permission, let alone a little ultra-sound or brain MRI. So, I assumed (what was that we said about assuming?) that the pre-approval process for radiation had all been done before I drank the barium and got on the planning table. Nope. We just went ahead and started the planning session without any approvals, apparently. Not sure how that happened, but I suspect poor communication all the way around had something to do with it.

So the lovely rad onc felt pretty crummy about all of that, and she's going to file an appeal with my insurance company so that she'll be able to treat me and get paid as an "in network" provider. That means she has to spend extra time dealing with nonsense, so I appreciate her willingness to pursue it. She can justify her appeal because she has some equipment and some techniques at her disposal that other providers nearby don't have (which, as I said, makes her one of the best around), and my li'l tumor, Spot, is in just a weird enough place as to be super tricky to hit with gamma rays without wrecking other important parts nearby like the small intestine and kidneys. Plus, my treatment has been way too long delayed by some things that look dangerously like incompetence or just crappy communication in the oncology group's broken bureaucracy. But, the appeal will take time, and will likely cause more delay, and if it's not approved, I'll have to get in line again with a different rad onc. Heck, it'll be time for my regular surveillance scans again before I get any radiation. Why were we doing those surveillance scans again? Oh right, to get timely treatment when progression is discovered. So much for that plan.

Thank goodness I still feel well and have no symptoms suggesting the cancer has spread. I am seriously lucky and very very grateful for that.

Several people have asked why I just don't run across the avenue and get treated at the other famous cancer treatment center in town. I am considering that, but in exploring that option, I am again confronted with some similar issues...long wait times to see providers, the prospect that some are not in network, the hassle of having all my records shifted over there, of having to tell my story again and again to new doctors, new nurse practitioners, a new bureaucracy. If I have to do it and insurance allows, I will; but I keep feeling that I'm so close to actually getting treatment with my current providers that I don't want to set myself up for another long wait time. Maybe it's something akin to Stockholm Syndrome. Of course another option is to switch all my care to Mass General under Dr. Shaw, where I am already a patient, and Dr. Shaw has indeed offered to schedule me for radiation up there. But the idea of returning to regular travel to Boston for care is somewhat daunting, especially when I know it is possible, at least theoretically, to get that care here in Nashville. Again, I am giving Mass General strong consideration and will do it if it becomes necessary. But it's just super-targeted radiation I need, not a fancy new clinical trial. At least not yet. And it's remarkable that I even HAVE ALL THOSE OPTIONS. Most people do not. Many people have none. 

For instance, take the fact that rural communities all over the country, but especially in Tennessee, are losing providers and clinics and hospitals faster than you can say "treatment delay, " in our case due to our state legislature's stubborn refusal to fully fund Medicaid and participate fully in the AHA. That puts things more in perspective. For a good take on root causes of the rural health care crisis, you might want to check out this opinion piece in The New York Times.

In all of this the main take-away for me is that no matter how vigilant and how proactive I think I am about getting care, there will always be something beyond my control, some problem I don't foresee, some detail I miss, some larger incompetency or built-in bureaucratic maliciousness that can't be overcome no matter how persistent one might be. And that worries me, not so much for myself, but for those cancer patients who maybe don't have the wherewithal to navigate this labyrinth of a health care system in the first place and have no one else to advocate for them. I am pretty good at advocating for myself, and my care is still screwed up, just when I thought I was finally getting somewhere. Imagine someone who isn't literate, or who doesn't speak English as a first language, who doesn't have a public blog to air their griefs, who has a disability or is incapacitated in some way or who has no family support? So, overall, I am still a fortunate person who has found herself in temporarily unfortunate circumstances. There are worse things. 

I just hope I don't have to drink another one of those barium shakes any time soon.