Month: May 2026

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Living With A G-Tube, 9 Months On, aka Fuck Cancer

It’s now been 9 months since I was last able to swallow everything normally. While I initially balked at the thought of a g-tube when it was presented to me before my surgery last August, I reluctantly agreed “just in case.” (Actually, my surgeon said, “This is going to happen.”)

I’m glad it was done. My swallowing hasn’t been ideal for years from late-stage complications of the scar tissue (something no one ever warns you about) stemming from the radiation treatments for my other cancer back in 2004. I was occasionally aspirating, but also managing it well enough that during all that time I had only one incident of pneumonia that required a hospital stay. I’ve had two in the last 2 months, both times stemming from occasions when I actually did try to eat and swallow. I think I’ve learned my lesson.

My swallow therapist has been wonderful, but after deciding to give it one more try after an agreed-upon break for a few months, I think I’m ready to throw in the towel. Considering that last week some of a single bite of food that I chewed (to get the direct taste) and spit out, still managed to find its way down my windpipe—and this tells me it’s time to give up trying. The situation isn’t improving, isn’t ideal, but as Ben says, “It is what it is.”

I have learned several things over the past few months in the event that—the gods forbid—any of you find yourself in a similar situation. I’ll probably be adding to this list during the day as things come to me, but at least I can pass on my initial tips and tricks.

One thing no one really prepares you for is the utter lifestyle change that tube feeding brings. You don’t realize how much eating is part of the social fabric of our society, and being tied to a g-tube negates all that socializing (unless you’re willing and happy to just sit at a table and watch everyone else eat and drink; I am not). Weekend lunches out together and nightly dinners were a source of joy and one of the few times that Ben and I could just sit together and unwind from the day, sharing thoughts, experiences, and frustrations. Ben can still cook for us both (something he loves to do), but mine needs to be pureed so it will go through the tube. We still eat at the same time, but since the g-tube can be messy with “real” food, it’s best done standing at the kitchen counter while Ben sits at the dining room table. Not exactly conducive to sharing. We still occasionally go out to eat, but I always get my meal to go so I can take it home and puree the fuck out of it (see below).

Now, some tips, in no particular order:

    • If you’re stuck with the tube for more than a short period, get a Ninja. It will allow you to reintroduce “real” food to your diet unless you’re happy with the same Nestle Isosource formula day in and day out.
    • I supplement the prescribed formula with Premier Protein and Boost High Calorie energy shakes.
    • Soups are good for enteral feeding and a good gateway back into “real” food. They’ll still need to be pureed but the first time that tomato bisque hit my stomach it was a little slice of heaven.
    • That got me thinking. If I can do soups, why not other food? Over the past nine months I’ve learned that pretty much anything can be pureed for tube feeding. I’ve done everything from fish ‘n chips to cheeseburgers and fries to steak ‘n shrimp to chicken Caesar salad. The key is to making this work is to use enough water to thin down the mixture to a consistency where it will easily go through the tube—often dramatically increasing the volume you’ll ask your stomach to hold. (Try to push pizza through a 3mm hole and you get the idea.) I’ve learned that starchy foods (potatoes, bread, pasta, rice)—no matter the consistency—can still be problematic and will destroy your syringe after one meal.
    • Flush, flush, flush. Cleanliness is next to godliness as they say. After you inject, always follow with at least one syringe of clear water to clear everything out of the tube and prevent any blockages at the connection to the mic-key. There’s apparently a valve inside there that prevents stomach contents from coming out when the tube is disconnected that needs to remain clean to function correctly.
    • There are many brands of enteral syringes available, so if you can, get the ones that can be cleaned and reused multiple times. Unfortunately, the company that supplies mine only carries the Vesco brand, which are cheap and good for maybe two or three uses (even with thorough cleaning) before they become unusable. When I was in the hospital I noticed they use the Monoject brand that keeps going, and going, and going, but unfortunately, my supplier doesn’t carry them nor can they be purchased through Amazon (unlike the Vesco brand).
    • Verify that all your medications are crushable. If they aren’t, ask your doctor for crushable or liquid versions. I haven’t had to deal with requesting crushable prescription meds since everything I’m on can be crushed, but OTC items required a bit of sleuthing. Most OTC meds are available in various formats. If they aren’t carried at your local pharmacy, Amazon comes to the rescue again.
    • Along those lines, after struggling for days after coming home from my initial surgery in August with a manual, plastic twisty-type pill crusher, I said, “Fuck it. There’s got to be a better way.” That’s when I discovered an electric pill crusher that makes short order of pulverizing my meds.  It’s just a repurposed coffee grinder, and frankly if you’d rather use one of those it would work just as well. (If my pill crusher ever gives out I’ll just get the coffee grinder; they’re about the same cost and the coffee grinder is better looking.)
    • Hydrate, hydrate, hydrate. One thing that’s often overlooked is keeping properly hydrated. To this day I still struggle because it’s just not something I think about, and I don’t get thirsty (or hungry, for that matter) the way I used to. My morning routine consists of 16 oz. of filtered tap water followed by another 12 oz. or so of iced vanilla latte. (You didn’t seriously think I’d give up coffee, did you?!) I follow that up throughout the day with another 16 oz. of water every few hours.
    • Developing reflux, or GERD is a definite possibility if you’re on tube feeding for an extended period. I’ve had issues with reflux since the late 90s (I’ve been on Prilosec for years) so this isn’t new for me, but it’s gotten worse since I’ve had the tube and it seems to be volume-related. I’m now acutely aware now of how much liquid goes in my stomach, and since it’s shrunk since I’ve been on this liquid diet, I can’t stuff myself the way I used to prior to my surgery or it will back up—which is not a pleasant sensation when you can’t swallow anything to flush it back down.

Now, about that taste thing. Theoretically you shouldn’t be able to taste anything that goes directly into your stomach via a g-tube, but I’ve found (and this has been corroborated by my nutritionist who’s heard the same from other patients) that oftentimes you do get a hint of taste from things. See: coffee (thank the gods).

I guess that’s about it for now. If I can think of anything else to pass on, I’ll add it.

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Released 41 Years Ago Today

Dire Straits: Brothers In Arms (1985)

On May 13, 1985,  Dire Straits Released Their 5th Album, “Brothers in Arms.” It spent 9 weeks atop the Billboard 200 album chart, and has sold over 30 Million copies worldwide. It was also the first album to sell over 1 Million copies in CD format.

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I Could Live There

Villa Castelluccio

This Puglian Villa was completely renovated in 2021, stripped back to its essentials and recrafting the low-slung pared-back spaces in natural materials. After a period as a holiday retreat, Villa Castelluccio is back on the market offering up peace and solitude amid five acres of olive groves outside Ceglie Messapica in Puglia.

The three-bedroom bungalow still exhibits the pared-back warmth with soft tones, thick walls, local handiwork and thoughtful proportions where steady streams of light enter the home through a series of openings. At the center is a living room that leads directly into an open kitchen, where concrete countertops and sinks made by local artisans are paired with brass fittings and simple joinery. The kitchen and connected dining room form the house’s gathering point. There are two very large  bedrooms in the main building , each with an en suite bathroom, while the third bedroom studio sits a few meters away with its own shower room and secluded terrace.

More terraces extend from the house under timber pergolas, creating outdoor rooms for cooking, dining and lingering during the hotter months. A partially enclosed pool area sits deeper in the olive grove, edged by drought-tolerant gardens.

The villa is within easy reach of Ostuni, Martina Franca and both coasts, and can be yours for a hair more than $1.7M USD.


(click to embiggen)

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Relatable. So Relatable.

Photo by Tarikul Raana on Unsplash

Like many truthful things, the reply arrived housed in humor but left a terrible lingering aftertaste of regret.

I was joking, but I also wasn’t lying.

I wonder if that resonates with you: the grief of remembering the person you used to be before this sickening season began; of wondering what in the hell happened to that previous iteration of yourself?

When I think about the millions of people I’ve crossed paths with over the last decade doing this work, there is such a through line of loss. Whether it was saying goodbye to the idea of God or country or family, to a belief in the goodness of people, to their sense of optimism about the future, to relationships with people they once felt fully at home around, they have been attending a long-running funeral that never fully ends.

But of the legion of lamentations they’ve shared with me, the greater mourning I have sensed in people is the loss of their former selves.

There is a cost to enduring the unceasing storm of Constitutional crises, acts of treason, atrocities against vulnerable people, and cultic indoctrination of tens of millions of people we share a nation with.

In our earnest and valiant efforts to confront this incessant ugliness, we have been transformed, and often not for the better. Oh, sure, these days have helped us clarify our convictions, distill what truly matters to us, and enabled us to tap into the strength and perseverance we’d likely never have discovered otherwise—but they’ve also rightly beaten the hell of out us in the process.

When I consider the person I was a decade ago and compare him to the person in the mirror (well, aside from looking forty years older), I can’t help but notice the latter doesn’t laugh as easily as the former, he is far less naive about his friends and family members, he finds it far more difficult to give people the benefit of the doubt, he doesn’t see the horizon of history as wide open as he used to.

I begin to grieve that version of myself and feel a bit guilty for losing the earlier one along the way, but I also know exactly how it happened:

He had to watch his former church friends collectively sell their souls to a vile, profane, serial predator, as if he were the Second Coming.

He sat at dozens of holiday tables listening to uncles and in-laws deliver well-rehearsed racist rants as easily as breathing.

He scrolled through hundreds of hours of the most asinine and baseless conspiracy theories about face masks, vaccines, rigged elections, and Democrat child trafficking networks.

He overheard his white neighbors of stratospheric privilege, rambling about the dangerous immigrants supposedly overrunning our town.

He began countless days reading about incomprehensible Supreme Court rulings, the passing of mindbogglingly hateful legislation, and the political victories of sociopaths and criminals.

All that shit leaves a mark.

And as I inventory ten years of exposure to senseless cruelty and prolific discrimination, it suddenly makes perfect sense what happened to that previous incarnation of me: he gradually faded away in the face of too much hatred winning too many times.

So, today, I am missing and mourning that younger, more hopeful version of myself, and I’m also worried that even this tired-but-not-ready-to-give-up iteration of me will also burn up in the inhospitable atmosphere of this national sickness, yielding someone whose heart is harder and whose sense of belonging in this place is even more tenuous than it is today.

But future me is none of my business, because today is waiting on me.

Right now, all I can do, all any of us can do, is to wake up within the day before us and appeal to the better still angels within our reach, to wield the damaged but still functioning humanity in our possession, to access all the goodness, courage, and faith we can still muster.

If there’s any blessing in lamenting the version of ourselves and of the nation we’ve lost over the last ten years, it’s in realizing we can’t afford to squander a day, waste a moment, or allow a single act of inhumanity to go unchallenged.

I miss the person I used to be before this nightmare began, but I’ll be damned if I let these heartbreaking days and the people authoring them take any more.

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Don’t get me wrong. I have no love for AI, but it does have its uses. Specifically, I use the Generative AI feature in Photoshop to get rid of unwanted elements and fix glaring damage in photos that can’t be eliminated by Photoshop’s other, conventional tools.

I also use the feature to extend images that are otherwise too small to use for some of the header images you see on this blog.

On the other hand, I still remain staunchly anti-AI for a variety of reasons, not the least of which is the environmental damage the datacenters that run these AI models is causing. Does this make me a hypocrite? Probably.

I used ChatGPT in the past to create images that left my jaw on the floor (like when I recreated my sketches and artwork, or more recently created the Grace Jones/Joan Jett thing), but I try to use it sparingly (as entertaining as it may be) because while I don’t think we have anything to fear from AI itself, I trust the people funding and running AI and their motivations about as far as I can throw one of those datacenters.

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A few days ago, I opened my Threads feed and was greeted by the post of a young woman, featuring a couple of resolute carseat selfies, along with the caption:

 

I AM….. PRO ICE PRO Military Pro Law Enforcement Pro Trump Pro Charlie Kirk Pro Voter ID Pro Accountability [sic]

Immediately below that post was another, absolutely identical to the first, except for a different account handle.

I continued to refresh my feed, greeted again and again by the same image, the same quote, yet from different accounts. (I’m currently at 26 and counting, by the way.)

Scrolling through my timeline, this morning alone, I encountered, not only five more greetings from my now ubiquitous brunette, shapeshifting female MAGA warrior, but at least four other different versions featuring other white women, supposedly also declaring their love for their Predator-In-Chief, his barbaric ICE foot soldiers, and MAGA’s anti-immigrant, anti-Black, Anti-Democracy agenda.

A cursory glance at my newsfeed, and no one would blame you for thinking a massive number of young white women are inexplicably assembling around a court-adjudicated rapist and likely serial predator, whose misogynist regime is trying to take away women’s body autonomy and voting rights.

And it’s all a mirage, just like everything about this President, his Administration, and their barbaric, yet rapidly shrinking white supremacist movement, but it’s an exhausting mirage.

Being gaslit will wear you the hell out, which of course, is the plan.

I think we all need to collect ourselves and understand what’s really happening here.

We need to inventory the emotional and mental toll of being inundated throughout our waking moments with an endless stream of gaslighting nonsense, Right-Wing propaganda, bot proliferation, and Conservative algorithm manipulation.

It’s critical that we don’t allow ourselves to be defeated by an alarming, terrifying, and infuriating fiction. We are not outnumbered.

Donald Trump’s current approval rating is hovering between 28 and 36 percent, depending on the source, and his support is never going to rise from here. This is his absolute ceiling.

His covering up of the Epstein Files, the lawlessness of ICE’s domestic terrorism, his starting of an unnecessary, sickeningly expensive war with Iran, stratospheric gas prices, and a cratering economy that has been in a tailspin ever since his disastrous tariffs began—these are mortal wounds to Trump and his party, and they know it.

Republicans have known since 2024 that the window was going to be incredibly short; that their policies have been wildly unpopular, their base has been dwindling, and that their quickly-collapsing, cognitively-addled, lame duck wanna be dictator has been steadily losing his capacity to bulldoze criticism and manipulate reality.

Trump’s broken campaign promises regarding transparency around Epstein, his vow to end wars, his asinine boasts to bring gas and food prices down, his wasteful ballrooms and national mall desecrations are not playing well with the former faithful who can barely keep the lights on or put food on the table.

The MAGA arrow is pointing down and nothing can prevent that.

Friends, what this all means is that we are the majority and it ain’t even close.

Well over two-thirds of this nation despise this Christo-fascist regime, their assaults on black and brown people, their endless persecution of the LGBTQ community, their attacks on the free speech and the Arts and diversity.

A massive portion of America is disgusted with their coddling of the wealthiest one percent, their pillaging of the Public School System, their poisoning of Health and Human Services, their polluting of the CDC, and their absolute refusal to address affordable healthcare or housing.

We have the numbers. All we need to do is start acting like the majority.

If we can all transcend our wars of preference, our purity politics, and our relatively superficial differences, we can defeat this minority movement. If we wield our collective power and unify our voice in November, it won’t matter how much they gerrymander, how difficult they make it to vote, or the violence they resort to in order to try and intimidate us.

The United States isn’t in hopeless peril; we’ve all just been fooled into believing the myth of our impending doom curated and amplified by those who have nothing else but lies, spin, fake followers, and paid rally crowds.

Donald Trump’s entire life, his supposed success as a businessman, and his disastrous presidencies have been fool’s gold; the smoke and mirror illusions of disinformation and media malpractice.

Beneath the partisan propaganda and the prolific gaslighting, MAGA is in its last days. It is a crumbling, self-devouring, rapidly evaporating niche movement of a small percentage of this nation who are being swallowed up by time and progress.

Don’t be disheartened by your newsfeed or distracted by the bombast of the propagandists.

The vast majority is anti-MAGA, anti-Trump, and pro-Democracy.

Let’s act like we know.

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