Thursday, July 10, 2025 – Day 331

Thursday, July 10, 2025

Good morning, friends, family, and fans!

It’s Throwback Thursday…guess I better dig up a photo where I still had biceps and functioning vocal cords since we didn’t take a photo yesterday…a miss!

Yesterday, we met up with Lis and Steve for lunch at Seasons 52 in Schaumburg. They’re heading off to London and then cruising through the Norwegian Fjords. What a great trip!

Lunch was excellent, though the noise level rivaled a middle school cafeteria on parent day. Remember those days, Nicole? Environments like that are tough for me. My soft, breathy, raspy voice just can’t compete with the din, and I end up repeating myself more than I’d like. It’s not the end of the world…just one more irritation courtesy of this shitty disease. I’ve always been a talker, so this new “speak sparingly” version of me is a big shift. If you find me unusually quiet in a group setting, don’t worry…I haven’t taken a vow of silence. I’m just conserving energy… and maybe waiting for the perfect moment to drop some well-timed wit.

I made a comment about reading the other day in the blog and Lis rattled off a bunch of recommendations. Turns out I’ve already read most of them (shocking, I know), but she did bring up The Stand by Stephen King. I don’t pick up his books because I don’t enjoy the horror genre. She swore it’s not his typical horror stuff…which is good, because I don’t need any extra nightmares…I’m already living one.

So she hands me the “uncut” version…a 1,152-page doorstop printed in a font size better suited for ants. The audiobook clocks in at 48 hours, so that tells me what I’m up against. I’m taking a brief intermission from the Prey series and hoping my arms still work well enough to lift this beast of a book 30 days from now. I managed a whole 10 pages last night. So…only 1,142 to go. Thanks, Lis. I think.

Ellen, the palliative care nurse practitioner, stopped by yesterday morning to check in. She’s got a great bedside manner…compassionate, calm, and genuinely curious about how I’m doing. It’s a gift to have someone with that kind of warmth and insight on this journey. We talked about a few things, including some leakage I’ve noticed around the feeding tube site. I hadn’t thought much of it, but Ellen flagged it as a concern…possible skin breakdown. So now we’ve pinged the surgeon’s team and are waiting to hear back. Just one more glamorous chapter in the ongoing saga of my digestive re-plumbing.

Today’s a blank slate, which is perfect. I’ll get back to voice banking and reading—The Stand won’t read itself, and ElevenLabs won’t clone my voice without a little effort on my part. I’ve learned I need these quiet days between social visits. Thankfully, Cindy…my ever-thoughtful Social Director…is excellent at spacing things out. She knows when I’m running on fumes and keeps my needs front and center. She’s the caregiver, my rock, and wife in this journey. It’s a lot of hats to wear.” And she does it without complaint. Thanks honey…I love you!

More tomorrow and I’ll answer the question on how my formula tastes.

Have a great Thursday.

Love you guys!❤️