Infusion Illusion Profusion Confusion -- Real Life Update 10/15/25

Hey Team Tom!

It's been a few weeks, so it's time for another update.

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Uno: My CT scan from last week showed continued improvement -- more tumor shrinkage and less inflammation! I've actually managed to go off of hydrocodone. I can finally sleep on my side again. It's so nice. You don't know the value of your favorite sleeping position until you've lost it.

When last we left me, I had rounded out four carboplatin and pemetrexed chemo infusions, and apparently . . . that's it for me. I asked the doctor for more chemo and he said no. The most infusions they'll ever run is six, and the survival stats past four aren't good? It's confusing, but I trust the oncologist. Now I'm simply running immunotherapy every three weeks.

That all said, man, it was so nice not to be poisoned this past Friday. This chemo does some really wild stuff to me mentally. After the fourth dose, I wrote this note down when I was in the throes of it, "There's a weird side effect to this chemo -- it's like having a quasi-hallucination, but more like a kind of a vivid, strange imagination. Just now I was able to clearly picture a girl with fiercely intense blue eyes that looked almost bird like. It's like a vividness to my dreams while I'm awake (or half awake). There's a tingle to the world as you sit here slowly dying. Shutting down. Not caring. Hard to explain. Listlessness. That's what this chemo does to you."

Now that I'm on immunotherapy only, it feels super easy in comparison. Sure, I was a little tired right afterwards, and my arms and scalp are dry and itchy, but that's nothing in comparison to how dark life got on days three-through-six after a carboplatin and pemetrexed infusion.

Apparently if my next CT scan shows even MORE improvement, then they might even consider moving me to a "stable disease" status, which is where they would cut down the amount of office visits and scans. I have to say that feels very weird, and I'm not sure I like it. While the doctor would be happy with "stable," I want "cured." I guess when you have Stage 4 cancer, you get what you get and just be happy you're not dead, dummy.

I'm hoping I'm lucky and immunotherapy doesn't turn on me, and it does the trick. As ChatGPT put it to me, chemo was running a bulldozer through my body, and now immunotherapy is like putting the guard dogs out to attack cancer.

Everyone please keep sending those vibes my way. I don't care if they're prayers, meditations, or even spoken to the universe in your goofiest Count Chocula voice. You send it -- I'll take it. I VaNt YoU tO vE cUrEd, ViStEr PURDOOOO.

Me and Kyle hanging out with Nanamancer

Dos: As you are well aware, the government has shut down. I am a contractor for the Air Force along with a good chunk of our crew at the company I work for. Unfortunately, that means I am furloughed without pay or even the promise of back pay. Government contractors get the worst of deals when this stuff happens.

Currently I'm burning my own PTO (and someone's generous gift of PTO hours -- THANK YOU) to get me through the past two weeks. It's a forced vacation. The biggest problem with that is that I'm a stupid cancer patient as well. If a CT scan comes up on a random day of the week when we all go back to work, I can't just, uh, not go because I don't have the PTO hours.

By the end of this all, things will be tight for a bit unless I can get some more gifted PTO. The people I work with are amazing, so my chances are pretty good! I also hear unemployment pay is an option if I run out of PTO, and thankfully I have family to fall back onto if it gets really rough.

FIGURE IT OUT, GOVERNMENT PEOPLE!

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Tres: I've been writing some music here and there on my forced vacation. I actually wrote the title track for Cosmic Radiation and Bad Luck. It's sounding great! A little weird, but that's my style anyway. It's like Muse meets Arctic Monkeys meets Dave Matthew's Band meets my style? I don't know. It's my cancer story in a nutshell though.

. . . also worked on some weird, experimental sound stuff that mixes an MRI with the sounds of the ocean since that's what I chose to listen to while I had my brain scan.

. . .also worked on an acoustic cover of an old song of mine from 1993 with my music therapist. She's pretty cool. I like what she did with the song structure to change it from my xylophone and muted distant trumpets thing to a folksy blues song.

. . . also playing a lot of Dune Awakening with Dylan. My friend Dylan is great by the way. He took me to lunch the other day, and I took him to see Tron Ares -- fun show! I liked it!

FREE MAZE! I'll have to do a blog post about that

Quatro: I've been living the single dad life over here with the Uber Wife training in Vegas . . . only Nana is here as well. So what would that be like? Single dad life but I also get to live with my mother-in-law at the same time? There's a sitcom in there somewhere. Nana has cleaned our kitchen, our fridge, our sink, our dishes, our kitchen floors, and done a bunch of other busy work . . . um, the laundry. If you're one of her friends from around here, she'd probably love to hear from you. I imagine hanging out with old friends would be WAY more fun than cleaning our house. She's great though! Happy to be here.

Uber Wife has been having a lot of fun in Vegas on the weekends! She's been sending along fantastic pictures. We'll get out there together one of these days soon. (So jealous she's been to the Sphere and to Omega Mart -- glad she got to have some fun over her birthday.)

We're Meow Wolf fans around here.

Diapermancer (now 16) is still rocking the mellophone in marching band. They've got a pretty cool show this year, and he's doing a great job. I'm proud of that dude. The whole band has put in a crazy number of hours practicing this year.

Amber Deathsong is consumed with work and school. They miss their spouse horribly.

Kyle Skystaff twisted his ankle and hasn't been working much. He's on the mend though. I'm sure he'll be working again soon.

So, there you have it. I'm on forced vacation from Government Shutdown. I'm no longer chemo poisoned. CT scans are doing pretty good. I'm writing some music and doing my thing. Everybody is busy with real life but me and Kyle!

Thanks for reading and keep being awesome, Team Tom!

Happy Dueling!