Do they keep switching up the team on you?

We have a new nurse basically every time. But our doctor and the trial coordinator are the same, and we've communicated the issue with them.

The issue is with (1) The Scheduler, who we don't have any contact with and the Trial Coordinator needs to deal with, and (2) every month (two trips) we get a new stash of Clinical Study drugs, and they have to go through a lengthy authorization process with multiple people signing off. Ultimately it gets bottlenecked in the Pharmacy where they can sit on the auth for a couple hours unless somebody is badgering them about it.

Some nurses understand this when I tell them, and other nurses do not. I told our nurse today to bug the Pharmacy people, she didn't. So we sat for two hours waiting for something to happen. Finally I tracked her down at her station and she did the extra prodding of Pharmacy that got things going but our early in/early out scheduled day turned into 8 hours at the hospital from 8 to 4.

We should've/could've been done before 2pm.

Anyway, our nurse kept us with the early 8am appointment on Friday so they'll just run the chemo pump faster to time us out by 10 or 10:30 and we can make our 1:30 flight.

I’m so tired of incessantly hearing about a half dozen billionaires who decided to fuck around and are now finding out. I have enough nightmares from people trapped in hells not of their own making, thanks.

I guess my griping was a conversation killer.

We are on our in-between day (aka, Chemo Pump Day) so we have nothing on our agenda in Beverly Hills except breakfast at the French Bakery and a probable walk to the dog park.

We had to leave Scola early because of the Scheduler's shenanigans, but Sylvie hung out with him yesterday. Matilda is happily knocking around Portland with family, and Emmett's on Guinea Pig patrol.

If all goes well, we'll be back at home tomorrow.

When we talked to our oncologist we discussed lowering the dosage of FOLFIRI (the standard chemo she's receiving along with the study drug) in hopes that there will be fewer side effects (fatigue, nausea, weight loss, hair loss). The fatigue is probably the biggest issue as Jacqueline is napping more than 4 hours a day even after a long night's sleep. And her waking moments are kind of muzzy and chemo brain.

Next big CT scan in a month. That's when we should really show some progress.

I’m so tired of incessantly hearing about a half dozen billionaires who decided to fuck around and are now finding out. I have enough nightmares from people trapped in hells not of their own making, thanks.

They seem to be bored in their cozy cocoon of cash.

I hope the high visibility of these guys finding out disabuses some people of the idea that if you have a lot of money you are the best person to be making decisions. Just a few people realizing who did not before that seems like a good thing.

Hec, I am pretty much always confused about what day it is because that is just something my brain cannot seem to keep track of but I thought y'all were supposed to be on a very regular schedule and that even that cannot be maintained seems pretty unfair. Good luck with getting home in a timely manner.

fatigue is probably the biggest issue

Fatigue is still the biggest issue for me. Physical exercise is the therapy recommended to me, but fighting through the lethargy to get started is hard. "You're tired? The solution is to go make yourself more tired!" is a difficult paradox to overcome.

I hate repetitive exercise, so that's another obstacle. I like walking, because I can vary the route to get different scenery.

Mid-afternoon is hardest. The urge to nap gets very strong, but if I give in to it I then have trouble falling asleep that night.

They seem to be bored in their cozy cocoon of cash.

I can help them reduce that problem a bit.

Congrats on selling the house, Gud!

They seem to be bored in their cozy cocoon of cash.

Seriously, you couldn't get me to take a trip in that metal tube even giving me a million dollars.

I hope the med changes help with the fatigue and fuzzy brain for JZ. The traveling and stress contribute to that a whole bunch too.

Brendon is in NYC for the NBA draft. The nephews of the best man at our wedding are being drafted so he is at some big watching party with the family. It breaks my heart that Sean isn't alive to see this achievement. The young men are so nice, focused, and hard-working. They deserve all good things. I could have gone with him, but it was complex to get work and pets covered, and really they are more his family than mine. Brendon knew their dad since high school. I'm just so happy for them. I'll actually watch the draft tonight for a change. Normally I don't know any of the young players.

After the gala he will head up to Otter Lake to get things in order for me to go there sometime next month.

The only one of those billionaires I feel bad about is the 19 year old.

Although the next time I see someone getting pissy about safety regulations and how it's better to just let businesses self regulate I'm going to point out that is the way you get janky submersibles made that turn into death traps.

This! Oh, Hec, no(Heck no!) kind of reminds me of stuff I've been through with disability stuff, too. Except hopefully there's not some eejit teasing you about how "they have to watch out for me," or "Ha, ha, Erika doesn't trust us," on your end. And, no, I didn't. They could(and can still, depending) fuck up a wet dream, except when I got it the most, I was too shy to say stuff like that. And that first thing should at least be said while Farmer In The Dell plays in the background, or I've wasted my life!