September 10, 2021
This post is about a day where nothing happened and everything did. It’s about happenstance and luck and gratitude. It’s also about stress and some scary stuff, but there are always both of those sides to the lung cancer coin. Today we flipped the coin and it was heads– OK, maybe kinda tails, but when we did two flips out of three, it ended up heads.
I Just Wanted A Little Advice….
I lucked into a cancellation appointment with Dr. Pulmonology today. (Stupid Covid has all lung specialists working double duty in the hospital wards, so the first official appointment I’d been able to get was for November 5….) The lack of specificity about what I should be doing with my activity level was making me nuts, and he’d been a straight-shooter about cancer early in the diagnosis process, so I figured, what the heck do I have to lose?
Imagine my surprise when he came in, sat down, and began to review the whole lung cancer saga, including the recent events with blood oxygen and pneumonitis, making diagnostic and treatment-related statements as he did. His phone alarm sounded at 15 minutes– clearly signaling him that he better get a move on– and we were not even done with the review. What emerged:
- He’s certain this is PD-L1 checkpoint inhibitor pneumonitis. He feels strongly that due to “the level of toxicity” of my body’s response to the immunotherapy restart, I’m done with PD-L1 checkpoint inhibitor infusions. He likened it to what happens with a beekeeper who gets stung. The first sting is nothing, but by the hundredth, the level of anaphylaxis is so high it kills the beekeeper. [Read more about PD-L1 and why it’s a big deal.]
- There are other side effects to PD-L1 inhibitors which are much more common, including GI, skin, and thyroid badness (of course, I have none of these) BUT lung disease is “life threatening.” I had the sense this was the start of a longer comment…and I was right.
- He’s thrilled with my positive, rapid response to the steroids. Then, here it was…. “Some people do not respond to steroids,” he said, looking at me very intently. “This time [last week’s visit to Ms. Awesome Shoes PA] was a shot across the bow. Next time we may not be so lucky.”
<Gulp> Oh. Just let that sink in a little. (Guess I shoulda gone to the hospital….)
The good news is, there are alternatives to prednisone.
Then came what’s always my favorite part: the Comparing Of The CT scans. He pulled up the one from February and the one from two weeks ago. People, you could see no evidence of a tumor. None. Zero, zip, nada. And the lymph nodes? One was teensy. The other previously big dude looked like some protoplasm-y science experiment gone terribly awry. It was not a round blob. It was more of a stretched-out streaky smear.
Anyway, he said he saw no significant evidence of pneumonitis on the most recent scan, “so what’s up with that?” he said, clearly thinking out loud. How would I feel about just a bit more radiation; a very high-resolution CT scan (CT with angio-something-or-other) to check for lung clots? I could probably get the CT scan within a few hours. Remembering my new life goal of being able to spontaneously glow in the dark, I told him I felt great about it.
Other stuff:
- He’s taking over the steroid taper– and apparently everything else in terms of my lung care right now.
- Tapering the steroids will begin pretty quickly. Down to 60 mg. tomorrow! I’ll live with steroids for a while– given my past response, he’s hoping for a quick response of one month vs. three. (Doctorly ideas of “quick” cracks me up.) The body produces at most 10 mg. of prednisone itself, so my body now things it’s in Tahiti– it has nothing to do with prednisone production and it likes it that way. The closer we get to 20 mg., the slower the taper is going to need to go. Sounds like the glands get really ticked off that they have to fire up again.
- Continue the fancy antibiotic until we’re at 20 mg. of prednisone because– and this is gross– people like me can get pneumocystis pneumonia due to the weakened immune system. The gross part is that this infection is caused by a fungus. (euwww)
- Come back for breathing tests.
- Get a pulse oximeter and use it.
- And, I learned about two hours later, I’ll hear from a scheduler about another bronchoscopy (yippee!).
Next came an important part, at least to me. How would the oncologist know about these new developments? Would I need to be concerned about her response? (Would the oncologist be mad at me?) Who would be my medicine prescriber? Who would I call if there were an issue? With exception of broad phrases about being an advocate for yourself, or doing what you need to do to get your questions answered, the subtleties of maneuvering serious illness don’t seem to get talked about much.
Learning how different medical systems work and interact is one of the most important tasks in patient self-care, in my opinion.
It’s better to ask the lay of the land than to try to figure it out in the middle of a hard time, because those hard times are when you need to get to your people quickly.
Basically, he said not to worry about it– he would write a note she would see and that would be that. He intimated that pneumonitis and other lung stuff is his thing, and she would get that. I’ll keep you posted– ego is a funny thing, probably hers included….
Once that was out of the way, I could broach the exercise thing. I introduced it as a quality of life issue for me. Long story short, he got it. Immediately. I told him that I needed to understand the reasons for rules or instructions, otherwise I would just ignore them. This clearly tickled him. I confessed I was kind of a nut about metrics– heart rate, power output– “like with Peloton?” he asked. Be still, my heart. Then he confessed:
“I would kill myself if I couldn’t exercise,”
He rattled off some heart rate zones, matched them to pulse oxygen numbers, and voila! I have parameters, and I will use my geeky fitness toys, my pulse oximeter, my heart rate monitor, etc., to keep an eye on where and how much and how hard I should be working out.
And just as he was walking out the door, he turned back. “I am really, really thrilled with your response to the radiation,” he said. “It’s superb.”
“You Have Ticks and Fleas”
The very fancy hi-res CTA was pretty much like any other CT I’ve had recently. What was different came after I’d been loitering in their waiting room for a while, when I asked how much longer they would like me to wait.
“The radiologist would like you to stick around, please, until she speaks with Dr. Pulmonology. There are findings.”
Findings? If you do a test, there will always be findings. Even non-conclusive findings are findings. “Uh, what kind of findings?” I asked. “I’m sorry, I don’t really know,” came the answer. “She just wants you to stay in the event that you need immediate treatment.”
Blood clot. Had to be a blood clot.
“OK,” I said, “Do y’all have any vending machines?” No, but they had crackers and juice for patients. So came one ofthose secret moments in life, when a small thing takes on the proportions of a massive guilty pleasure. Perhaps you still buy bright orange peanut butter cheese crackers, but I do not. So when the little pack appeared, alongside a small box of apple juice, I smiled.
Eventually they called me to a phone. Dr. Pulmonology’s assistant said he wanted to see me that afternoon, but had no availability. He would call with a treatment plan. When he did, some hours later, it was to share one of his med school teacher’s old sayings: “You have ticks and fleas.”
In other words, a blood clot in the lower part of my right lung, plus thickening in the lung indicative of more pneumonitis.
The good news: treating one treats the other. I now have more medicine. More instructions. More tests to come.
Oh, and a new measure of caution: avoid bashing myself so I also avoid the bleeding that can result from taking blood thinners. He was somehow fixated on climbing ladders, but sky-diving was also an example of activities to avoid. He explained, “Once there’s a brain hemorrhage, we really don’t have any place left to go.” Yeah, I can see that.
Nothing happened today, but everything did:
- Those ridiculous life expectancy statistics paled in the face of streaky blobs on a CT scan.
- A doctor tripled the amount of time he would ordinarily spend with a patient. He responded to my concerns as though it were as much a life and death matter as a blood clot.
- He gave me tools I can use to manage my own wellness.
- I am one lucky, privileged, very grateful woman.
- And, when they say go to the ER, you really have to go….
Here’s hoping that’s one place you don’t have to go any time soon.
Thanks for reading.
Blood clot image: Reddit/Unknown
Lungs image: Gordon Johnson