On Wednesday at Mayo I got unscheduled CT scans, and they show that the squamous cell carcinoma tumors in both my neck and lungs are (mostly) smaller, relative to August 13. There are some new tumors in the lungs,* which is obviously not ideal, but the shrinkage of most tumors is really good. Two tumors in my neck appear somewhat larger, but that could be secondary to the biopsies performed on those tumors as part of the UCSD petosemtamab clinical trial, since biopsies can cause an inflammatory response that can’t be distinguished from new tumor burden via CT.
One other significant piece of evidence supports the theory: that I remain headache-free is a mark in the “this is likely inflammation” column. Regular readers may recall that I didn’t have any treatment for most of September, due to the six-week washout period 🤮 required for the petosemtamab trial, and by the end of that washout period I was getting ominous headaches that later resolved without intervention, apart from the petosemtamab.
Bess sent a CD containing the CT scan data files to UCSD, because I assume Dr. Sacco, my oncologist there, will want the UCSD radiologists to look at them too.** It’s conceivable that the UCSD radiologists will have a materially different read than the Mayo ones, but I’d guess differences will be small. Considering how many of my guesses about the cancer have been wrong, I should probably quit guessing, but I’m still doing it. If my cancer were a prediction market using real money, I’d be broke by now from getting so much wrong.
“But Jake,” you might ask after reading the preceding paragraphs, “you said previously that your CT scans are scheduled for today? What gives?”
I’m glad you ask, or might ask, or accept me putting words in your mouth for purposes rhetorical: on Wednesday morning I woke up and, per the usual, trundled half-asleep to the kitchen. As I’ve done hundreds of times since the May surgery that took my tongue, I drank some water and expelled the mucus plugs in my throat. I grabbed the faucet to wash away the results, but said results woke me right up because I saw something bizarre: the mucus plugs were…red. Red? Why red? Is that blood? Sure looks like blood. Looks like blood came out of my throat. There more where that came from? What’s the cause?
I called to my personal physician: “Can you come look at something?” Much later, Bess said that “Can you come look at something?” has become her least-favorite query, especially if it’s coming from the bathroom or, now, the kitchen, because it usually means something confusing or bad (or both) is on my body, in my body, or coming out of my body. In the moment, Bess examined the bottom of the sink and said, authoritatively, indeed with all the authority that comes from medical school and a decade and a half in medicine: “That looks like blood.” I concurred, though without her authority. If you’re the sort of person who wants to see for yourself, scroll to the very bottom of this essay for the pictures. They’re deliberately way down there so that people who don’t want to see them are less likely to.
She dropped immediately into doctor mode and started quizzing me, to the point that I felt like I was a multiple-choice medical exam. I told her: no pain, no trouble breathing, no idea apart from the obvious where it’s coming from. She used a phone light to look in my mouth. Nothing. For the first time in a while, she didn’t poke anything with or without warning me first. Possibly, because she was afraid of irritating whatever was the source of this morning’s exciting new symptom. I spit some more, hacking much more gently this time, and we didn’t see much that was bloody, but we didn’t have a cause. I tasted a little blood in the back of my throat. I’ve probably not become a vampire with an insatiable desire for humans, unless the vampire part of my nature also includes amnesia (Bess’s reports of fang marks on her upper arm are patently false: fake news, nothing to see here).
What to do? We planned to go to the ER, because active bleeding in the throat is not good. I’ve not been to medical school except through proximity, but “active bleeding in the throat is not good” was my expert medical opinion. As we got ready, Bess thought to call the Mayo ear, nose, and throat (ENT) department, because the likely outcome of the ER visit would be an ENT consult, in which an ENT resident comes down to the ER and does a “scope.” A “scope” means spraying some numbing medication into the nose and then sliding a tiny camera up there and then snaking it down the throat. If you’ve cleared a drain, the action is not dissimilar. It’s not a fun, comfortable process, but I’ve now had it done a bunch of times and it’s not the worst procedure either.
Before we left for the ER, Bess got an ENT appointment with a PA at 11:00 a.m. Great: easier than the ER—cuts out the middleman. I sent a Mayo portal message to Dr. Hinni’s account, which is usually monitored by a nurse. Dr. Hinni is the surgeon who led both my surgeries; coincidentally, I’d seen him Monday for a routine follow-up. He’d looked around in my mouth with a little mirror and said I look great. It must be disappointing to be a doctor, doing all this great work, only to have the great work you’ve done up and die on you. Maybe it’s like carving pumpkins or ice sculptures, knowing that the work is doomed to transience. Anyway, the hoi polloi like yours truly use the Mayo portal, but Bess is among the exalted elect who work for Mayo, and on whom the Mayo light shines down always, so she sought her favorite backdoor: she checked Microsoft Teams, that blesséd communication tool of Mayo insiders, and saw that Dr. Hinni’s PA, Tony Mendez, was online, so she shot him a message, along with the photos showing what had come out of me.
Tony replied within a few minutes saying we could come right in, but Bess didn’t see that message, so we went in for the 11:00 a.m. appointment. Fortunately, Tony was available then, which matters for continuity of care and speed of care, since he’s already familiar with me and my many maladies. We’d have a lot less catch-up with him than with someone new.
Tony scoped me, as expected, and the scope didn’t show much; he didn’t even spot the fangs that I of course don’t have. He saw some granulation tissue in one or two spots, which indicates something healing or scabbing over. Granulation tissue is relatively good, Tony explained, because tumors don’t granulate over. Tumors just cause more problems, and it didn’t immediately appear like a tumor was pushing into my throat. It does not take advanced degrees to know that is good.
He pressed firmly on each of the tumors on either side of my neck without warning (what is it with medicals poking you without telling you first?) while the scope was in my throat, and he was relieved to see that the necrotic tumor tissue that’s been draining out of the left side of my neck since the events narrated in “What in the hole is this? A medical mystery story” wasn’t draining inward. One side of the throat showed some peculiar ridges that could be the result of a tumor pressing in, but that could also be from any number of other things, including a problematic hyoid bone. A hyoid bone horn could be poking in. That day I learned that not only rhinoceroses, Satan, and brass instrument sections have horns: the hyoid bone does too.
Not finding active bleeding was good, but Tony was concerned that an artery could be leaking blood. The lingual artery ends prematurely and was cauterized as part of the massive May 25 surgery, so it was a prime candidate. In medicine there’s a term called a “sentinel bleed,” which basically means a relatively small bleed from a vessel that precedes a massive, very dangerous bleed from that same vessel. It’s like noticing a small leak in a submarine and going, “That leak is not likely to stay small.” It’s like hearing the floor creak in a horror movie moments before the jump shot of the monster bursting forth from the closet. It’s like all sorts of terrible metaphors—the sound of shattering glass, a strange flash of light, the sudden smelling of toast— that would make you say “huh, that’s strange” before everything collapses.
Anyhow, metaphors aside, sentinel bleeds can happen with aneurysms in particular: a little blood in the brain causes a headache, and that precedes the fatal aneurysm. If you ever suddenly feel “the worst headache of your life,” get you to an ER ASAP and tell the triage nurse “I’m feeling the worst headache of my life,” cause it might herald an aneurysm.
In my case, Tony wanted to check for bleeding with a contrast-enhanced CT scan, that would make the vessels light up and reveal any leaks or signs of a tumor eroding into the vessel. He didn’t think that such a bleed was likely, but it was possible, and fatal if it occurs. Catching it would allow emergency surgery to tie off or attempt to cauterize the vessel, or, more likely, to give interventional radiology a chance to perform an “embolization,” in which they use a catheter to seal off the vessel with a coil or some kind of plugging material (I am told that “spackle” is not the correct term). Even so, the surgery or embolization could fail because tissue behaves badly secondary to radiation and tumors. If I were bleeding and elected for surgery, I might still die, but I’d have a shot. Bess and I told Tony that on Monday, Nov. 20 (that is, today), I was supposed to get some CT scans anyway, so he threw the chest and abdomen CTs on too. Why get contrast injected twice in a ~five-day span?
So Bess and I walked to scheduling, where a nice woman named Jenny mounted a spirited effort to get me a CT scan slot. Mayo is good at many things, but getting scans done expeditiously is often not one. Jenny wore bright blue contact lenses over her brown eyes, which gave her a kind of uncanny-valley-meets-mystical appearance, and it felt a little like she’d been hired direct from Arrakis to work the Mayo front desk. She sent me to have my creatinine—a measure of kidney function—drawn by the lab, since healthy creatine levels are a requirement for receiving the IV contrast I’d require for the scans.
The only available CT appointment was initially 5:10 p.m., but Bess worked the system some by intimating, vociferously but not inaccurately, that, if I needed emergency surgery, it would be best to find out during business hours. Jenny got the Mayo Scottsdale campus to slide me in. Score! We drove over. I wanted to stop on the way at J L Patisserie for snacks,*** but J L was barely yet distinctly too far out of the way. At Mayo Scottsdale I got into the CT area quickly, although the IV necessary to deliver contrast had me crying and whimpering from the pain of needle insertion. My veins are by now well scarred: they may be prominent, but they’re horribly damaged, like some political figures. Anyway, the IV did its job and I got scanned.
The first paragraphs of this essay relay what the scans found, since that’s the most important thing and in almost all writing, you should start with the most important thing. People are TERRIBLE at this. I remember this conversation between Tyler Cowen and Dave Barry on the subject:
BARRY: There are certain fundamental things that businesspeople have trouble with [in their writing].
COWEN: What’s the main thing they get wrong from the business mentality?
BARRY: OK, the most consistent mistake . . . not mistake, but inefficiency of business writing — and it was very consistent — is the absolute refusal on the part of the writer to tell you right away what message he or she is trying to deliver. I used to say to them, “The most important thing you have to say should be in the first sentence.” And “Oh, no, you can’t. I’m an engineer. We did a 10-year study, this is way too complicated.”
And inevitably, they were wrong. Inevitably, if they really thought about it, they were able to, in one sentence, summarize why it was really important. But they refused to do that because the way they found out was by spending 10 years of study and all this data and everything, and that’s the way they wanted everyone to look at what they did. They wanted their supervisors to go plowing through all they had done to come to this brilliant conclusion that they had come to.
Today’s top takeaway, for example, is that the tumors in my body are mostly smaller, so I lead with it. The tumors-being-smaller thing is good from a longevity perspective and alleviates some immediate logistical challenges because I’ll continue petosemtamab for two additional months, barring the unexpected. Being ill admittedly means expecting the unexpected; I didn’t have “hacking up some blood from my throat” on my expectations list for last week. The good news about the CT scans is more important than the fact that we got the results of the CT scans while we were in the parking lot of a juice place called Kaleidoscope, picking up a cherry smoothie whose cherry pieces Bess thought looked a little too much like the blood I’d brought up that morning. She thought the observation a little gross, but interesting from a thematic perspective (ER doctors routinely compare foods to things they’ve seen at work, which does not always make them popular dinner guests).
After Bess and I got home, Tony called us to say that he showed the CT scans to Dr. Hinni, and together they traced the arteries in the neck and concluded that there don’t appear to be any bleeds there, or any tumor eroding or compressing the vessels. Great news! The radiologist, Tony, and Hinni have all looked carefully at my insides, from the outside, and concluded that important parts of my insides are likely to stay in their proper channels.
So what happened? We’ll never know for sure. Some causes could include that 1. I’ve been hacking too hard in attempts to expel mucus, or 2. the petosemtamab is affecting the skin inside my throat as well as the skin on my body, or 3. granulation tissue (which can show up even months after surgery, particularly in people who have already been messed up by radiation). Whatever the cause or causes, if the bleeding doesn’t seriously recur, then the blood I hacked up somewhat random episode in an illness that’s been a relentless parade of boredom and pain, punctuated by terrifying and annoying episodes.
Instead of doing the writing Bess and I were supposed do on Wednesday, we spent a bunch of time in the hospital. To be sure, I don’t want to sound ungrateful for that, and not dying was and is good. Things went about as well and as fast as they could have, given the circumstances. We both got lucky, and the system worked. Tony was great! As he’s been since we met him. And yet we were still gone for like six hours, taking care of business—the business, that is, of healthcare. “The more things go wrong, the more things going wrong,” which went up last week, is highly congruent with the recent episode.
That night, to celebrate the good news from the scans Bess picked up some takeout from what used to be one of our favorite restaurants, FnB, and the food was…okay. The last bunch of times we’ve either been there (Bess) or gotten takeout from there (me), the food has felt a little phoned in. It’s never been bad, but we find ourselves looking at a dish of, say, shaved kohlrabi, cheddar cheese, lettuce, and horseradish, and we think: “Well shit, we can make that in a few minutes and for a lot less than $20.” The food used to be consistently magical, and in the last, I don’t know, six months, maybe more, it’s been less exciting. By now it’s hit that nexus of “less exciting” and “more expensive” that make us look elsewhere. Bess confirms that, although the months of disappointment with FnB correlate to my months without a tongue, the food quality has declined even when the dishes are eaten with physiologic structures intact. The Arizona challenge remains, however, in that there aren’t a lot of good or even interesting-looking restaurants, let alone really good ones, let alone great ones. I may have spent two months unable to eat via mouth, and now I can only do slurries, but I want to at least try for interesting slurries, while I can.
I have to fly to Houston on Nov. 27 to see MD Anderson on Nov. 28, and then fly home Nov. 29. Today we’re going to San Diego for a petosemtamab infusion, the week after, Houston, the week after that, San Diego again. Being sick is a full-time job—Wednesday’s adventure is thematically consistent with this—except one that you pay for instead of being paid. At least the CT scans indicate that I’ll get to spend more time with Bess, and with you, for which I’m grateful.
If you’ve gotten this far, consider the Go Fund Me that’s funding ongoing care.
* In radiologist-speak: “New areas of nodularity and patchy airspace disease in the lung bases.” It appears that the radiologist caught two new nodules: “New 6 mm nodule in the right lower lobe” and “New nodularity and patchy airspace disease in the posterior left lower lobe.” But if a bunch are also “stable or decreased from prior,” that’s pretty good.
** That the most-efficient way to send medical imaging is still via plastic disc is insane, but that insanity is not today’s topic and it will have to wait for another time. The whole “share medical records via the EHR system” thing still doesn’t work seamlessly, to put it lightly.
*** Bess says that I am “like a Labrador retriever in human form.” This furthers her argument, I realize. My tail does wag at the prospect of one of their chocolate cookies.
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