Saturday, June 28, 2025
Good morning, world! Weāre five days out from my feeding tube surgery, and letās just sayā¦itās been a hell of a rideāand Iām not convinced itās over. Lucky me. Nicole flew in early yesterday morning. I stayed home while Cindy ran airport duty, mostly because I didnāt want to stray too far from the bathroom. Iāve been loading up on over-the-counter remedies to relieve a stubborn case of constipation. So far, no luck.
Friday, June 27, 2025
Good morning! Yesterday, I was reminded of a story from my teen years. Back in the early ā60s and ā70s, weād head up north to Camp Jorn, a YMCA camp in Manitowish Waters. We started going as a family, all crammed into a tiny cabin with bunk beds. I think my parents had a separate room for some privacyāthough how much privacy you get with eight kids in tow is up for debate.
Thursday, June 26, 2025
Good morning, everyone! Another day of rest and recovery. I canāt say yesterday felt much better than Tuesday, but Cindy told me I looked and acted better. Now I just need to pass that memo along to my bodyābecause it clearly didnāt get the message. I spent most of the day in bed, trying to get up occasionally to help my body adjust and nudge things back toward normal. Still no success on the toilet front since before surgery on Monday.
Wednesday, June 25, 2025
Good morning! Iām happy to be home from the hospitalābut honestly, I wish I felt a little better. Iām surprised by how much the incision still hurts. Dr. Ujiki, my GI surgeon, told me to expect pain similar to getting my ears pierced. Iāve never had that done, but if this is what it feels likeā¦ Iām definitely checking it off the list. Ears pierced? No needāIāll just hang jewelry off my belly.
Tuesday, June 24, 2025 ā Day 315
Good morning from Evanston Hospital.
Yesterdayās surgery went very wellāno complications, just the usual healing ahead.
That said, thereās quite a bit of pain, and I didnāt sleep a wink last night. Hospitals donāt exactly specialize in rest. The good news? I should be heading home later today.
Iāll fill in the details tomorrow when Iām more rested and clear-headed. For now, just a heartfelt thank you for all the well wishes and support. It truly means the world.
Iām looking forward to recovering in my own spaceāsomewhere I wonāt be woken up every few hours for vitals, check-ins, and mystery beeping.
Have a great Tuesday.
Love you guys! ā¤ļø
Monday, June 23, 2025
Good morning, and welcome to a new week. Today marks a milestoneāand like so many milestones on this ALS journey, it carries a double edge. This afternoon, Iām having the feeding tube installed. I havenāt stepped on the scale yet today, but Iām guessing Iām down to 158 pounds. Iām hopeful this step helps me reverse the steady slide in weight and daily energy. Thatās the plan, anyway: fuel the body, reclaim some strength, and keep going.
Sunday, June 22, 2025
Good morning, all!āØItās another steamy one. Yesterday morning, I joined Cindy and Bear for a walk. The temperatures were pleasant, and there was a nice, comfortable breeze blowingājust enough to make it feel good to be outside. As we turned the corner, we saw the contractors already hard at work at 7 a.m., backfilling the new sidewalk. When we got closer, we spotted a bobcat straddling the sidewalk, spreading soil with no clear way for me to sneak past.
Saturday, June 21, 2025
Good morning! Itās going to be a hot one this weekend. Good thing Iāve got a solid stack of books to keep me companyābecause Iāll be staying inside for most, if not all, of it. Thank you to everyone whoās sent reading material for my ALS journey. Books are the perfect escape. Once Iām absorbed in a story, I can forget about ALS for a while, and that kind of distraction is gold.
Friday, June 20, 2025
Good morning, everyone! Today marks the first day of summer! Itās always exciting to hit the summer solsticeālong days, warm nights, and that unmistakable summer energy in the air. Of course, then I remember that it also means the sun starts its slow march to the southern hemisphere. The days will start getting shorter from here on out. Yeah, yeah, I know the sun isnāt actually movingābut it still feels like the beginning of the long slide toward winter.
Thursday, June 19, 2025
Good morning, yāall. Letās make it the best day possible. Yesterday was the big GI appointment at Evanston Hospital to discuss surgery for a feeding tube. We left the house at noon, and let me just sayāthese appointments near the lake are an all-day affair. Round trip? Seven hours! For context, I couldāve driven to Minocqua in five, had two hours of cocktails, stared across the lake, and found inner peaceāall in less time.
Wednesday, June 18, 2025
Good morning, friends, family, and curious visitors. Today is my GI appointment. If things go according to my plan, weāll be having a preliminary conversation about getting a feeding tube installed later this month or in early July. It feels urgent. I weighed myself yesterdayādown to 160 pounds. Thatās nearly a 14% drop from a year ago. Itās time to stop the slide. Our neighbors behind us, Gene and Sarah, are friends from our Senior Care Volunteer Network (SCVN) days.
Tuesday, June 17, 2025
Good morning! Todayās a special day. Cocoās two and moving fast, When she sees Grandy, she zooms right past. She puts on frowns with a dramatic shrug, But melts us all with a smile and a hug. š Happy Birthday, Coco! šš„³šš The last couple of days, Iāve mostly been reading and staying off my legs. Iām not sure how much these legs have leftātheyāre starting to feel more clumsy and unpredictable around the house.
Monday, June 16, 2025
Happy birthday, Miss Sally! (Mom, Grammy) Good morningānew week, new opportunities. Find yours and make the most of them! Yesterday was ALS Day at Wrigley Field, a game I had considered attending. In the end, I passedādidnāt want to deal with traffic and crowds. But as it turns outā¦I regretted not going. It was a gorgeous day, it was Fatherās Day, the Cubs won, and I had family there. I hadnāt even considered that I mightāve been invited onto the field for the first time.
Sunday, June 15, 2025
Good morning.āļø Letās take a moment to celebrate all the dads out thereāHappy Fatherās Day! Wishing everyone a great day surrounded by family, friends, and maybe a cold drink or two. We celebrated a day early, gathering yesterday at Donna and Joeās house. Saturdays tend to be easier for the younger crewāgives them time to head home and mentally brace for Monday. Joining us were the Balasis (Mark, Barb, Geoff, and Kristen) and Alex and Nicole (the fiancĆ©e, not the sisterā¦ yes, I knowātoo many Nicoles).
Saturday, June 14, 2025
Good morning. Happy Saturday. First things first: I finished Certain Prey yesterday and jumped right into Easy Prey. So, to whoever is sending me these books, could you maybe include a gift receipt next time? Or at least a clue? Help a guy out, please! Yesterday, we met Cindy and Barbās cousin Lisaāon the Ring side of the family (maternal)āfor a nice end-of-the-workweek lunch. She was in town for a business meeting in Barrington, and the timing was perfect for a little family get-together.
Friday, June 13, 2025
Good morning.āØItās Friday the 13th! š±š«£ This date always reminds me of the last time I intentionally watched a horror movie. Flashback to WIU in 1978āI went to see the debut of Halloween. This movie , along with The Exorcist and Psyco, put me so on edge I swore off the entire psycho-killer genre. I still dislike taking showers which use shower curtains. On our new bath shower, I asked Cindy to get a clear shower curtain so I could at least see somebody lurking with a big knife in hand.
Thursday, June 12, 2025
Good morning. Welcome to Thursday. A couple of weeks ago, I shared that Alex is making his own wedding ring for the big day on September 13. Since then, a few generous folks have come forward with gold tucked away at the bottom of old jewelry boxes and offered it to him. My sister Lis sent a pair of gold earrings that once belonged to my mom, and Cathy Keffer found a gold ingot her grandmother had purchased back in the 70s.
Wednesday, June 11, 2025
Good morning!āØWelcome to Wednesday. Tim and Shawn returned the Yukon yesterday, freshly equipped with a new battery and a fully recharged A/C system. Without one or the other, that vehicle wasnāt going anywhereāespecially with 90Ā° temps on the way. Huge thanks to Tim and Shawn for the top-notch concierge service. As if that wasnāt enough, Tim also helped clean up the garage. After our recent hazardous waste run, there were items scattered everywhere, leaving the car once again exiled from its rightful home.
Tuesday, June 10, 2025
Good morning, Andyās Army! I have read all the cards from the open house and the card selection and the messages were moving. I was emotionally hungover much of last weekā¦so I had to pause a few days before I could open them. Iām always amazed by the power of words and the emotions they can trigger. I just want to keep saying thank you for such a beautiful event and the love that was sharedā¦I still feel it!
Monday, June 9, 2025
Good morning, friends, family, and curious onlookers. Today marks 300 days since the ALS diagnosis. Three hundred days of trying to will my body to correct courseāstill waiting for that miracle rebound. Iāve said this before: Iāve always believed my body was strong enough to overcome any challenge. No matter what I threw at it, it found a way to push through. But now? It just wonāt wake up and fight back.