Tag Archives: clinical trial

on life

Check In

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A rough day.  We had the first check-up back at Santa Monica UCLA for the trial.   Getting up wasn’t so bad, and the traffic, while terrible, wasn’t as bad as when you leave an hour later.  Our appt was at 9, while last week we drove to get there at 10.   The 405 sucks.  We got there and checked in, and had some really good talks with the nurse (Lauren) who took care of him to get the blood from his port, as she talked about some nutrition approaches (6 meals a day, 1200 calories at a minimum) as well as some thoughts on going to the bathroom.  She was just wonderful.   Then we moved into an exam room to talk with a doctor associated with Dr Goldman, and she was wonderful too.  With Dr Goldman, we did talk about potentially using CBD/THC to help with sleeping and appetite.   Afterwards, he spoke with Felicia the social worker – that was for an hour, and afterward, he was definitely emotionally exhausted and a bit more sad and upset.  When we got home, he was very tired.  He cried.  We did what we could to help him get calm.  He’s obviously feeling defeated.  We have to persist in making him work towards wellness.  There’s always a chance this will work – and the fact that his vitals weren’t any worse is good – although apparently sodium is low.  He slept the afternoon and that did seem to help, and he managed to eat some of the filet mignon we grilled.  This time we left the filet mignon at the 1.5 inch thickness and my goodness it was good.  He then also had a lot of gagging in the evening, while also concerns about going to the bathroom.

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Emotional Return Home

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Happily this day was short at the clinic.   We just came in in the morning, got another dose, and a few more blood collections.  But then we were able to go home, and man, it was a wonderful sensation to know that our own bed was awaiting us, as well as the bidets!  Having no bidet is a reminder that we’d gotten used to it.  We then went home and got settled back in.  Larry was a bit emotional.  I think the situation continues to weigh on him, obviously, and it’s getting harder and harder to ignore what is confronting us.   He cried a few times.  Fran and I tried to comfort him, and we got him focused on TV and movies to take his mind off of things.  So fucking terrible.

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Long Day at the Clinical Trial

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This was the long day of the clinical trial – an early start, and then the first dose of the drug, which was two pills in the morning (and that will be the case for each day).  They collected blood samples before he took the dose and then hourly, then every two hours, after that, for 8 hours.  Larry also had to pee in containers so that the urine could be analyzed, and do that for 24 hours after the dose.  Good times.  The time did manage to pass, with us listening to podcasts and such, and before you knew it, we were released to go back to the hotel.  We ended up ordering some pizza and pasta from a nearby Italian place (Vito’s Pizza) for food for dinner delivered to the hotel.

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First Day of the Clinical Trial

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Monday was the start of my last week of leave.  I finally got the process going for looking for a place for mom to go.  I ended up using links Mila sent me that connected me to A Place For Mom – and I’ve already spoken with some places in Tarzana.  Might go visit next week.  Mom is mostly on board, but I think she understands and gets that this isn’t a simple thing and is a big change.   Slow steps.

I found out my car had nothing wrong.  But I did learn that when you’re not actually using the A/C cooling feature in your car, you shouldn’t turn on the A/C Compressor.  Huh.  I did not know that.

Anyway, Monday was a chill day after that.  Shored up that we will be heading to Santa Monica on Wednesday, not Tuesday.

I met with a social worker that Mila set me up with on Monday afternoon. It’s a short term thing but will basically be some therapy for me.  I hope it can be something that helps.  I bet it will.

Tuesday – honestly a big day of nothing.  The three of us just hung out for most of it, got packed up for our 3 days in Santa Monica, as we are getting a hotel out there to avoid having to drive back and forth on that nightmarish 405.  We also got Arby’s – well, I went and drove to Reseda to get it and brought it back, and totally worth it.  Continued watching Mrs Maisel Season 3 and I also got my delivery of the Twin Peaks From Z to A box set, which has everything.  Everything.   And it’s got the pilot and Part 8 of theReturn on UHD – watched the pilot in UHD and it was great.

Wednesday – we got up bright and early and were able to get out to Santa Monica UCLA Health – the drive there sucked hard as even leaving at 9am for a 10:30am appt meant over an hour on the road.  Ugh.  The only activities happening today were to collect bloodwork for labs, and then to meet with Dr Goldman after he reviewed the results.   All of us had some stress that he was not going to continue the trial, but as of now, that isn’t the case.   Fran and I grabbed some lunch across the street and Larry had a chance to have some one on one time with the SIMM social worker, and it did help emotionally.   I don’t know – I hope so.  Crying can help and talking to someone external can let you reveal your true thoughts.  We need a miracle.  Anyway, our Comfort Inn is just a few blocks east on Santa Monica Blvd – and we spent the afternoon there.  Nicki (yay!) joined us there as she had been out and about from work early, and we got to hang out and chill.  Bought some wine at a wine store a block away, and then ordered in Tender Greens.   The hotel is what it is, but I miss home.  Tomorrow is the biggest day ahead of us – the first day of the drug, and then a day of monitoring.  Wish us luck, pray, anything.

on life

Clinical Trial Sign-Up

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Man it sucks realizing that my 4 weeks of leave from PwC are coming to an end.  I do have to say that it’s a fantastic benefit – and I think it made sense to take it during this period where Larry is still somewhat mobile and active.  I know that if things go south it will be just as hard to work – and I’ll have to figure that all out as it happens.  Anyway – this day we were off to UCLA Santa Monica to formally sign up for the clinical trial.  I can’t say that I was in a great mood today.  It’s hard to think about what we’re doing – it’s a Hail Mary and a long shot and could be what is finally what closes things out for Larry, but the alternative of him continuing on this chemo only increases his misery at the side effects.  It’s really a tough position to be in – and we don’t know if what we’re doing is right or wrong.  Looking back at these last 18 months or so, it’s tough to know if we made any missteps.  I don’t think we did.  We went with the information we had and were as aggressive as we could be – but his cancer was just that much more aggressive.  I don’t even think doing the hepatic pump install was a mistake – it was what we had and if it had worked would have bought him a couple years, at least.  I just wish somehow we had found this cancer earlier.  That’s the biggest regret.  So I was in a shitty mood today, Larry snapped at me during the appt for something stupid but I just couldn’t deal, so I shut down.  Finally back at home Fran was able to get me to get it off my chest and we could move forward.   We made filet mignon steaks that night on the grill and they turned out surprisingly okay.  That night, in bed, Larry and I embraced and comforted each other – it’s been tough for everyone, and I probably will remember that more than anything else that is to come.  I fucking hate that this is what it is coming down to.  It’s just not fair.