Stories of Lung Cancer

We tell ourselves stories in order to live.     ~Joan Didion

Lung Scans, Russians, & Miracles | Dec 2 2022

Winter mountaineering
The Wilderness of Lung Cancer Research

Tuesday, Nov 29 2022

I am lying in a machine, on a sliding table at the outside edge of a huge arc. The table slides me forward, under the arc, and back, out of it. I don’t know how far in either direction I travel; I keep my eyes closed. This is a regular CT scan, with IV contrast. The last one was on September 26. They happen roughly every two months. Each time, I receive a dose of radiation equivalent to a round trip flight to Boston.

I’d rather be in Boston.

From today:

My head is half on, half off this pillow. My neck feels contorted.

I wonder why they don’t they tell you to close your eyes. There’s just this little sign next to the red light as you slide in. Ha– post-laser blindness would be a real bummer.  

The male voice that gives directions is like a little chant. Breathe-in. Hold-your-breath. Breathe. It happens so fast– gotta exhale faster so I can be ready for the next one. Or maybe not take such a deep breath? But I want those lungs to be inflated. 

Isn’t it just amazing that humans have figured out how to do this?

They slide me out. The woman’s voice says, “Here comes the contrast…are you OK?” The IV line jostles in the crook of my arm.

Oh, honey, of course I‘m OK. I’m waiting for the rush of warmth– arms, legs, hands, pelvis. At least the first time, they tell you it’s gonna feel like you’ve peed in your pants.

Today on the form where it asks, “History of surgery?” I just wrote, “Yes.” For all the private dread that haunts me before the test, once I feel the table under my back, the dread melts. I’m in it. I can do this. It’s is a nice shift from this morning, when all I could think was I can’t do this, all I could feel was a hopeless exhaustion.

“This” being the whole process. For weeks, a low key backdrop of anticipation, anxiety, dread; a slow build of crabbiness and the flailing involved as I try to figure out what could possibly be wrong (like, duh….) The iodine contrast and thousands of gallons of water I need to drink to try to flush it from my brave kidneys. The morning-long visit with Dr. Oncology a day or so later: sign in, grab a seat, wait. Get called to her examining room, go through the vitals check, endless quizzing about fatigue levels, side effects. Blood pressure, pulse oxygen, blood draw. Wait. The blood results come back. Dr. Oncology comes in. Visit ensues.

Thank goodness the results will probably land in my chart this afternoon. Then we’ll know the tone of tomorrow’s visit.

Graphic: question marks, exclamation points

The Visit with Dr. Oncology, Nov 30 2022

“It’s the Russians,” I tell Dr. Oncology. “Every time the Russian radiologists read my CT scans, things we’ve never heard of make a guest appearance.” She cracks up. The latest guest star in my health extravaganza? Atelectasis, which, if you read Dr. Google indiscriminately, could make you believe you have a collapsed lung. Read closer and you might see that it’s also when teeny parts of lung (alveoli) don’t fill with air. Here’s the least hysterical explanation of the condition I found.

Dr. Oncology listened to my deep breaths and said, “That’s great inhalation,” followed by a jesting mutter: “What is he talking about?” “I’m telling you,” I said. “Those Russians are just anal.” She cracked up again.

But also, hello, Dr. Russia, where do you think my cancer was? Because if you hit an area with enough radiation, it’s gonna fry. And we all know things that fry get tough. Plus, if you kill something and it shrivels up, there’s going to be a stretch of dead scar stuff there. Like leather.  Like, duh. (I know, I know, the guy’s just supposed to observe and report. However,  think his report should say, “This is a superior image of a miracle.”)

There’s also some cool news from the scan: remember our old friend [not] groundglass? That’s now described as “minimal hazy groundglass opacities.” Minimal? Minimal?! This is not the way the severe inflammation was described a year ago. It’s amazing how the human body can heal, just amazing. (That stupid report should give my body extra credit. And make another reference to miracle.)

The word that summarizes the visit: stable. I was angling for the higher status (in my opinion) NED, No Evidence of Disease, but Dr. Oncology prefers to keep a level head. “We don’t know what those cells are doing,” she said. “I’ll take stable and celebrate,” I told her. “Exactly,” she said.

herbs

EGFR S768i: A New Wilderness?

She tells me she got the note I left in my chart and made the correction. In her notes from the last visit, she’d said I have Exon 19 and 21 EGFR mutations, which was not correct. Exon 21, yes, but I also have an Exon 20 point mutation, S768i.

When she said S768i is considered “uncommon,” I sort of snorted and said something like, “no kidding.” (Basically, research on S768i consists of meta reviews of studies to see how many times this mutation shows up in patients in general. Not often, is the conclusion. So, you won’t see a lot of research about something that affects so few people. Yippee– welcome to the wilderness in lung cancer research. )

Then, to my surprise, she launched into a commentary on treatments and research studies, throwing around terms like VEGFR (I think) and ramucirumab (a monoclonal antibody), and referencing newer thinking that TKI plus chemo (simultaneously) might yield superior results in terms of life span. (I recently heard an EGFR specialist at Mass General speak about this. “I’m open to it,” I told Dr. O.)

Much of the newest stuff is still in trial right now. Unless they have it in clinic at a patient’s institution, the new stuff is basically just nice to read about over morning coffee.

She also referenced something she’s said at conferences…I think. She was going at such a clip, I wasn’t following.

I wonder now, did she think I was pressing her for an explanation of the course of treatment? That maybe I was concerned about that little EGFR bugger, hanging out all alone in my DNA? I wasn’t. But as I think about it now, she did emphasize that if anything were to develop, the first step would be a biopsy. (No shit, Sherlock.)

I told her that there was so much happening in the field so fast, I couldn’t imagine being her and keeping up with it. I said that the perception of medicine as being the science of what is known and applied in a one-size-fits-all formula isn’t accurate– “It’s much more of an art at this point,” I said. “Figuring out the individual situation and approach….”

She agreed. She said something about beating a dead horse; when I suggested there was probably a better analogy, she laughed. She allowed as how I was right and that she’d leave it to me to come up with one. Then we both agreed there was no sense in changing course in treatment when things are stable.

I like learning. I like finding out about lungs and cells and all that science-y jazz. Truth be told, though, these days I get tired when I read about the research. Although, compared to the past, progress in treatment as a result of research is moving at the speed of light. But it’s still basically a slog. There will probably come a time when I have to get up to speed, but not now.

Now, mostly, I am sinking into a quiet pool of relief.

Thanks for reading. Here’s hoping you’re having some gentle moments in your days.

Woodland pool

And maybe some turkey cupcakes?

Cupcakes frosted like turkeys

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Love the turkey cupcakes!
Love the answer to “history of surgery”–every time I go to Phelps for my mammo/ultrasound and they hand me that form (that has a ridiculously small space for the answer to things like surgery, mammograms, etc.) I want to scream and say, “I fill this out every time I come–you know the answers!”
Glad to hear about your miracles–in some ways, isn’t all of this a miracle? Oh sure, I now have two breasts that look like someone kicked one of them in the side where it collapsed, and one of them on the top, and sure, they are hard as rocks in some places (thanks, radiation!) BUT I’m alive and (so far) cancer free at the five-year mark.
And while I know there are no guarantees, every day that I wake up and feel good, it’s a miracle!
As always, thanks for sharing your journey with us.
Peace,
Connie

[…] or so ago, I was not feeling the yes. I hadn’t been for many days leading up to and after the last scan. I was feeling dread. Not about the scans, per se, but about All they […]

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