Three weeks ago, Bess and I noticed what we assumed to be three large whiteheads on the right side of my neck. “Weird,” we thought, “but the petosemtamab is provoking an acne-like rash, and whatever that is, since it looks like acne, it’s probably part of the rash caused by the drug.” I’m sensitive to growths on my neck, given that there are four or more tumors in there, and I’ve received radiation on it, and it’s been operated on multiple times. My range of neck motion is maybe 30% of what it was before cancer. Anyway, Bess and I talked to Dr. Sacco, my oncologist at UCSD, about the apparent whiteheads before the last petosemtamab infusion, and Dr. Sacco gave Bess the go-ahead to lance the whiteheads with a sterile needle.

A procedure! ER docs like Bess love procedures. She once did a thoracotomy, which requires the doctor cut through the patient’s fourth and fifth intercostal space, spread the ribs with a “rib spreader” (it is what you think), and use their hands to manually pump the heart. In movies and novels, it’s always the villain who wants to hold someone else’s still-beating heart in their hands, but in real life sometimes the heroes get to do it. Anyway, this procedure was less involved. Bess cadged a needle from an appropriate source that’ll go unnamed here and gleefully lanced me the day after we saw Dr. Sacco, cackling the whole time about how “she who wields the sword, has the power.”* I was afraid but did not die, though a bunch of gunk flowed out when Bess massaged the area after the lancing. Bess didn’t know precisely what the gunk was. It seemed thicker, more copious, and less odorous than would be expected from a small abscess. Whatever it might have been, it was out and we hypothesized that that was probably good. The experience was moderately painful, and I tried to think about other, positive things, like mild sun on the beach, or a viewquake, or nutritious-yet-tasty foods like peanut butter.

As you’d assume from a lifetime of imbibing competently created narratives, I am not in fact introducing the idea in the previous paragraphs only to let it peter out. I more or less successfully focused on matters other than my neck until a week from last Friday night, or, more technically, Saturday morning, when I woke up at 4:00 a.m. I went through the usual drink-water-and-hack-up-mucus drill, which is unpleasant but also now a consistent part of my life, and I was getting ready to inject a small amount of nature’s sleep aid into my peg tube when I reached up to scratch my shoulder and felt something wet and slimy.

Even my sleep-addled brain registered “wet and slimy” as notable. “Shit,” I thought. “What’s that?” Wet spots out of place (heretofore known as WSOP) are often medically ominous. In the bathroom, I flipped the light on, annoyed that I was probably destroying my ability to get back to sleep, but I also saw hummus-like goo along my right shoulder and neck. I understood that there was almost no way the WSOP could be hummus, which has never dripped on me from the ceiling; to enjoy hummus, I’ve always had to work for it, and I’ve never had it, or chocolate, or peanut butter, drip spontaneously on me, or from me, for my own delectable satisfaction.

“Whatever that is, it can’t be good,” I thought. I went to the bedroom and woke Bess, but I mixed up the order of things I told her: instead of saying: “I am okay, but can I show you something?”, like I ought to have, I said: “Can I show you something?” Seeing her go from “sleepy” to “alarmed” in the space of my sentence, I properly added: “I am okay.” Considering how quickly she jumped out of bed, I don’t think she believed me. She’s highly skeptical of anything that comes out of a patient’s mouth (or mine), in the manner of most ER doctors. Doctors hear too many medically implausible or impossible stories. She followed me into the bathroom and examined the WSOP running along my neck and shoulder, and she agreed that that couldn’t be good. Learning that she too thought that that couldn’t be good made me feel better about my medical judgment., but not better about the actual situation. Though it couldn’t be good, Bess also couldn’t say exactly what it was (useless ER doctors). It wasn’t fluid like pus, and it didn’t smell like necrotic tissue. It also, thankfully, wasn’t bleeding, or squirting or spurting or any other number of alarming gerunds that would have required a call to 911. She called upon her considerable medical prowess to confirm that 1. there was a small hole and deduced that 2. the small hole was where the substance was coming from. I felt reassured.

She pressed on the area around the hole without warning, also in the manner of ER doctors, to see if more would come out. More did. The mystery was at least partially solved. Apart from the hole, the right side of my neck had also been getting steadily redder over time, and we couldn’t help noticing that the redness seemed to have accelerated. Yet I was breathing, didn’t have a fever, and wasn’t showing any signs of septic shock, so a 4:00 a.m. ER trip wasn’t merited. We cleaned up the WSOP goo that had erupted from the side of my neck and went back to bed. Once we’d determined the need for immediate, emergent medical intervention wasn’t necessary, the next-best clinical step was “ignore it and go back to bed.” We’d look again in the morning.

Saturday morning, we saw that the goo had continued to leak all over me in the night. I’d gone from the general “feeling bad” that I’d been suffering to “feeling totally awful, as if I was being colonized by some alien organism.” The hole was still there and the skin around it had gotten redder and angrier, which made me think I’d have to go the ER despite not wanting to. The bottom half of my face was hideously swollen, too. Choose your animal analogy: rabbit, chipmunk, bulldog. Bess assumed a skin infection. I was wondering: “Why does this shit always happen to me on the weekend?” The peg tube has spontaneously come out of stomach twice, and both times on a Saturday, necessitating ER visits when interventional radiology (IR) wasn’t readily available to put a new tube in the hole. Going to the ER is expensive and time consuming, and it’s where the sick people are.

Bess tried to contact UCSD’s oncology department, but, it being Saturday, no one was home, so she tried ear, nose, and throat (ENT). Got a resident! He said the hummus-spewing volcano might be a necrotic, infected lymph node, and as soon as Bess heard that she realized that that read could be right. If the problem was a necrotic lymph node, that also means an abscess running deeply and dangerously into my neck was less likely. The resident asked us to send pics and said he’d call his attending, Dr. Califano,** and get back to us. Bess took a bunch of pics in which I look close to as hideous as I’ve ever looked.

Hours passed. Bess and I debated going into the ER despite having already begun the grinding of the medical gears. A CT could rule out a deep abscess, and I was feeling increasingly bad. But going to the ER sucks even if you’re being paid to work there, and it sucks worse as a patient paying to be there. Around 2:00 p.m., we got antsy and Bess called the ENT back. The resident picked up and said he was about to call us back—a likely story— to say Califano agrees that it’s likely a necrotic lymph node surrounded by a raging skin infection and that I should start an antibiotic called Augmentin.

We didn’t manage to acquire the Augmentin until 6 p.m. that night, and I injected it into my peg tube right away. By Sunday morning, I was feeling better and the swelling had declined some. Despite the experience being bad, it probably would’ve been worse if it’d happened Tuesday, when I was scheduled to fly to San Diego. I was being infused with petosemtamab on Wednesday and then, conveniently, seeing Dr. Califano for a repeat biopsy required by the study. There was (and still is) an enormous tumor growing out from the left side of my neck anyway, so I figured it ought to be easy to punch.***

“Easy,” I read in the preceding paragraph. “How much of the cancer and treatment experience so far has been easy?” I’m not a believer in fate, and yet I superstitiously felt like I was whacking Fate with a rolled-up magazine and daring it to bite me. (For once, Fate did not bite me, and the biopsy was in fact easy.)

With the infection identified—and the hummus-like WSOP determined to be whatever goo makes up an angry lymph node—I also understood why I’d been so torporous in the preceding weeks. I kept getting up absurdly late and being unable to function for hours. At most I’d have a few hours of relative energy. I’d berate myself and say: “This isn’t you. This isn’t like you. Who are you?” And then I’d sit in an exhausted haze instead of doing that which needs to be done. I read an inspiring book called Grant’s Final Victory: Ulysses S. Grant’s Heroic Last Year (you might’ve heard it alluded to in the Daily Stoic podcast), and Grant appears to have died from a squamous cell carcinoma of the tongue, caused by cigars. Grant spent much of that year writing his memoirs, hoping they’d provide financial security to his family. He and I are unalike in many ways, but this we have in common.

Grant wrote with a pen, I write with a Kinesis Advantage 360 keyboard featuring Box White switches, but the basic thrust of trying to write a memoir in hopes that it helps those who come after is similar. I get, too deeply, this problem:

Of the doctors, at this point the microbiologist and surgeon George Shrady spent the most time with Grant. He tried to keep his visits brief, because he sensed how much Grant wanted to press on with his daily writing.

Doctors back then and doctors today suck up a damned lot of time! Fortunately, my personal physician is also my best editor and reader. She is in fact reading this over my shoulder right now, as is her wont.

Anyway, Grant was worse off than me in many dimensions, and yet his writing example is one I need to better follow. The infection took a lot out of me, and Bess speculates that it was an “indolent” infection. My ears perked when she said that, because “indolent” typically means something like “wanting to avoid activity or exertion; lazy.” I’d been feeling indolent for weeks, but I’d not known that bacterial infections could also be lazy. But, ah-ha, there is a second definition! “Medicine (of a disease or condition) causing little or no pain. (especially of an ulcer) slow to develop, progress, or heal; persistent.” The infection caused little pain and didn’t progress much, thus allowing it to linger and sap me of vitality.

Being ill makes me feel like there’s always something: surgery, chemotherapy, travel, and now infection. Or maybe I should add: “and now Augmentin,” because the Augmentin is doing bad things to my stomach and digestive tract. Better than death but still frustrating. At the end of Tom Wolfe’s novel The Bonfire of the Vanities, Sherman McCoy, former bond trader and master of the universe, protests to reporters that “I have nothing to do with Wall Street and Park Avenue. I’m a professional defendant. I’ve undergone a year of legal harassment, and I’ll undergo another.” I’m now a professional patient, which is to say a professional sick person. As of October 20, I’ve undergone a year of medical harassment / treatment, though I’m unlikely to undergo another. I’ve been conditioned by experience to always expect a new problem. Perhaps the most recent is Augmentin causing a fungal infection in a place where one really does not want a fungal infection.

The preceding paragraph also helps explain why travel is no fun. Friends have asked if I want to do a dream vacation. I see where they’re coming from, but until recently I was relentlessly exhausted by surgery, chemotherapy, and infection. I’m doing somewhat better, but I still feel on the verge of catastrophe. Weight is part of it: I’ve lost around 40 lbs and worry about starvation. That is not a joke. Most of my calories are injected into my peg tube, and I “eat” from pouches of Liquid Hope. The TSA won’t let Liquid Hope pouches through airport security theater, so I have to check them in a bag. If I show up somewhere and my bag—containing the food I have to eat, the syringes I have to use to inject it, and so forth—doesn’t, that’s an immediate crisis. I can’t buy peg-tube food in a grocery store. If I don’t have, or lose, medications like antibiotics when I need them, that’s a crisis. I don’t know what the next potential crisis might be, but I want to avoid it. Acquiring Covid on an airplane or in an airport could result in a crisis. Some opportunities, if they aren’t seized in the moment, are forever foreclosed. I don’t want to sound boring, but a lot of my life entails trying to think a little ahead of health problems. For me, the best days are ones with maximum energy and minimum problems. Ideally, ones where my lymph nodes don’t explode. I hope to have more of those, before the end.

If you’ve gotten this far, consider the Go Fund Me that’s funding ongoing care.

* Okay, this didn’t actually happen, but it’d be funny if it had.

** I keep mistyping his name as “Dr. California.”

*** As in, punch biopsy. I’m not suggesting that Dr. Califano was going to punch me in the neck with his fists. He seems like a lover, not a fighter, but I can’t be sure, and will try not to elicit violence from him.