May 31, 2024: jgwkia has moved to substack


JGWKIA (jg will kick its ass) has moved to substack. You can access (and subscribe to) it by clicking here.

The full URL to my substack is http://jgwkia.substack.com/. There will be no more new posts here, and eventually jgwkia.com will point there, not here. Bye bye Blogger!




Health, Family visits + UCx4, hotel moves, BmBx, and AKOWHN

Tue Apr 16, 2024
AML 3.0 treatment - Day 29

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[UPDATE: Wed Apr 17 - 1:00p PDT]

🤬🤬🤬🤬🤬🤬🤬🤬🤬🤬🤬🤬

The 20-25 minutes of Bone Marrow Biopsy hell I went through on Monday was for naught. They didn’t get what they needed. So instead of a “day off” today, it looks like I'll have to go in for *another* one (using a different method) this Friday morning in Santa Monica. They want me to sedate me and are requiring that I have a driver and a caretaker -- of course I have neither. I've had this kind of BmBx before. I don't need sedation, just a shit-load of Tylenol. Hopefully my docs can get the sedation order removed from the appointment so I don't have to cause a fuss by refusing it real-time. The silver-lining is that I can watch Phils and Sixers today, but not sure this 4+ day delay on deciding the next step is worth it.

🤬🤬🤬🤬🤬🤬🤬🤬🤬🤬🤬🤬

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Summary: Day 29 = Day 1 of Cycle 2, right? Not so fast. We're taking a little pause. How little? Won't know for a couple days. But I get at least two days off from chemo! Whoo-hoo! Cycle 2 will start in either a few days ▶️ or a few weeks ⏸️ depending on the results of yesterday's grueling Bone Marrow Biopsy (BmBx).

I will post again with the ⏯️ details (and implications) when we know more, likely Thursday.

Want to know more? Read on...

It's been a full week since I last posted and a ton has happened in the last 168 hours. Not going to document everything, but I'll try to cover the most important stuff.

The most important thing: Cycle 1 (and the treatment overall) is going OK and there's no immediate danger/concern. Everyone just (optimistically and correctly, imo) assumes things are going to go well, but let's just stop for a moment and acknowledge that AML is a killer disease and battling it a third time is serious business. I think the doctors had hoped that my counts would have recovered a bit by now so we could go right on to Cycle 2, but like I talked about last time a pause between cycles (so counts can recover) is pretty normal since the Venetoclax -- the oral chemo I've taken every morning until today -- really does a number on your blood.

This is a summary of my counts from yesterday.

Hemoglobin and Platelets were critically low, and since I had a nine hour (!!) appointment in the Research Center on Monday, I got both a red blood and platelet transfusion in between the (trial-required) mandatory hourly blood draws and BmBx.

Today these counts are higher -- thanks to the transfusions -- but Neutrophils are still only 0.03.

Platelet count is still critically low, but 32 is much better than 10.  The threshold for transfusion is about 15.

As discussed last time, the Neutrophils need to be at (or close to) 1.0 -- normal range is between 2.5 and 6 -- before we do more chemo, so I have a feeling the 2 or 3 week "pause" is what we'll wind up doing. Also, the rest of the counts need to recover. The only reason the Hemoglobin and Platelets are up is from the transfusions. If my bone marrow doesn't start producing this stuff on its own... well, let's not think about that.

The exception to the pause strategy would be if there are Blasts in my marrow. The Zifto+Aza/Ven was supposed to knock all that shit out. If it didn't, we may have to start Cycle 2 this week and just take the chance with the low Neutrophils. We'll see when the prelim BmBx results come back tomorrow or Thursday.

Speaking of which, yesterdays BmBx was awful. Probably took 3x-4x longer than the first UCLA one back in March. It's ridiculous that these things are just a normal part of my life again. I'm not going to link to a video, but they are out there if you want to see what it's like -- JFGI. And, no I don't do more than the localized lidocaine. I hate narcotics and other major pain killers. 24 hours later, my lower back still hurts like hell and I can only walk about half-speed. Gotta take some Tylenol.

Despite the low counts (and the accompanying fatigue) I rallied for Heather and Floyd's visit last week -- which was awesome. Where was Orion? He was on the 8th grade East Coast trip to D.C. and Philly. We missed him, but he had an amazing time exploring all the historic sites and hanging with his friends.

I moved out of the Luskin Wednesday morning and got all settled at the new place before they arrived. Floyd was able to check out 4 UC campuses while he was here: UCLA; UC Irvine; UCSD; and UCSB (in that order).

We all walked the UCLA campus a bit on Wednesday afternoon. Then he toured it on his own on Thursday morning; Heather and I went with him to Irvine Thursday afternoon, I took him to UCSD (which really wrecked me -- I had to stop and stretch at least 10 times) and the Gaslamp district for dinner on Friday, and his cousin Lauren took him to UCSB on Saturday.

Here's a pic of Floyd in front of the big tree at UCI. Can you spot him?

And here's some BP at UCSD


Why was UCSD so hard for me? I think it was the combination of the big day at UCI the day before, my counts continuing to fall, and just trying to do a little too much. 16k steps? Probably not the best idea.

On Saturday morning, it was chilly but nice in Westwood for brunch...

... but a storm was rolling in from the west and it was cold and rainy for the UCSB visit. Still, the kiddos had a great time. Floyd even ran into his buddy Charlie on the UCSB campus. Baseball game was rained out though.



It was only raining lightly in Westwood -- the real rain came on Sunday -- so while Floyd and Lauren were at UCSB, Heather and I explored the UCLA Botanical Garden which was lovely. Here's a pic. More on that link.

On Saturday night, Heather took me out to a really nice French restaurant in Westwood called Violet. By Saturday night I was absolutely exhausted in every way, but I found the strength to go out and I'm glad I did. I definitely felt a bit alien-like, but it was so good to connect with H and just try to feel normal.

Floyd met up with us after and we walked over to Diddy Riese for dessert. But despite the cold weather, the line was probably 30 people, so we blew it off. I'm going to have to go back there at some point and get an ice cream cookie. Hmmm... maybe tonight or tomorrow.

Sunday was moving day #2. Floyd and Heather headed to LAX on the early side. I relaxed, watched some Phils and Golf, packed up, loaded my car, and checked out of the Plaza La Reina. Still had a few hours to kill before heading back to the Luskin, so I went to Rocco's to watch the Masters. They had really good wings -- not as good as the Kezar, but solid -- and an awesome Philly style pretzel.

Loading my stuff back into the Luskin late Sunday afternoon zapped any bit of energy I had left. I could tell my counts weren't coming back by simply by how tired I was. Got a decent sleep and headed out for that long Research Center appointment on Monday morning. 

And that's it for now.

iwkiaaaa

Comments

  1. Go Gauchos!! UCSB is the best!
    Work on resting too, right?!
    XO KWizzle

    ReplyDelete
  2. Jaggu / Jaggy D - for some odd reason, I’ve been unable to sign in via my Google account to comment here. That said, I just wanted to let you know I’ve been following your updates and think about you often. Glad you got some family time. You’re incredibly strong and an inspiration to so many. Continuing to send good thoughts - A.N. (aka Gaddha 😀)

    ReplyDelete
  3. So great that you got that family time… gotta do dat. Hope you are going back to the Luskin for the duration and don’t need to move again :-/ Keep kickin’, Chachi - if you have some energy, a preferred crimmage app, and want your place kirred some time soon, lemme know.

    ❤️ Nabib

    ReplyDelete
    Replies
    1. Great to see the smiles during H & Floyd visit. Keep on kickin’! 🤩
      -Jxn

      Delete
  4. Family is what it’s about and you are such an amazing Dad and husband. Sending love to all. Try to rest when you can❤️

    ReplyDelete

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