In Memoriam: Cagliostro

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Fist and Faith wrote:I'm glad I joined the ranks of those who are no longer imaginary. :D
Zen Solipsism for the win. :D

Seriously though, the whole GoFundMe / whatever thing for medical care is a sad damn indictment of the US medical system IMO.

--A
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Post by Skyweir »

Isnt it though?
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keep smiling 😊 :D 😊

'Smoke me a kipper .. I'll be back for breakfast!'
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Post by Seareach »

|G Cag xoxo
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Cagliostro
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Post by Cagliostro »

Sorry it has been a bit since an update. Mainly because it was this Monday that we FINALLY got back the results, and while immunotherapy unfortunately not an option (doc said I had a "bland" tumor), there is a chemo that I can take, and I took my first of it today. They say that I need to drink a lot of water because this can cause kidney issues, so I need to keep drinking water to keep the kidneys functioning. Wheee!!! Lots of other bad side effects but none as bad as that.

So, I'll be propping myself up as long as I can, but unfortunately this is the last option, and when this runs out, that's it. Honestly, if I make it to 2022, I'll probably hang it up.

They gave me some powerful anti-nausea medicine and said to take it the day of therapy, and for 3 days following. I had thought he said to take it before treatment, so I took it in the morning, despite the bottle saying to take it in the evening. I now understand why they said to take it in the evening, as it has made me drowsy all day long. I slept hard during treatment, and am sure I was snoring. I brought this up and they said that I am to take it evenings only, started with the evening following treatment. So now I know, and why.

Everything feel kinda awful, and am looking forward to a big night of sleep.

Meanwhile, my other sister and her husband who live in Florida came to visit this last week. During the summer, they load up in their RV and have been on the road and campgrounds for over a month, if not two. It's been a great time with them, just like it was with my other sister who still lives in Wichita.

My mom came out a few weeks before that, and was a good time, but also an irritating time. There has been a joke of sorts that she only comes out to see the kids. She's been having horrible back issues (I guess I stepped on too many cracks for years) and has been unable to get around for long at a time, but wanted to bring the kids back to their home for a week, which we were a bit uncomfortable with, and my eldest sister said she could hardly get around anymore and convinced us to have her take the kids for a couple days while she visited, and we'd all get together for the weekend. Well, she got her time with the kids first, and then we visited Saturday, and they made up a ton of excuses why they needed to drive back on Sunday. I was pissed because again it felt like they just wanted to see the kids and not so much me. I had some bonding moments with my stepfather this visit, who has always been a dick until the kids were born. I let him know at the end of their visit that I really enjoyed bonding a bit with him for the first time, and he said the same. I have become very blunt about my emotions, particularly when they are positive emotions, and I see I make some people a bit uncomfortable when I talk about the cancer in blunt terms as well. My sister in Wichita said that when they got back, my stepfather seemed to imply that my mom was uncomfortable with me looking thin and gaunt and talking about my cancer probably freaked her out and she ran away rather than face it, which is her M.O. throughout life. Pity, that.

On Father's Day this year, I did my first ever escape room, which I'll go into more detail if someone is curious. We ran over by 2 minutes, but finished it. There was a lock that we had trouble making work, but eventually got it open, and probably ate up at least 5 minutes, which is a pity, so we count it as something of a victory anyway.

When my mom came down, we did an escape room on the Saturday that was our day, and we beat it in 42 minutes (they time it for an hour). This past week, we did 2 escape rooms - one we didn't get in time even after asking for a hint and not understanding what explanation we got for a particular puzzle. Also, there was another lock that took a lot to turn the dials on, which we complained about. They didn't let us finish, and was the most expensive of the bunch. We did another last night with my sister, and beat it. It was puppet themed and well constructed and scary, but a bit different from the previous escape rooms we had done in several ways, but still was pretty challenging and fun.

They are expensive things, and my sister and her husband are loaded financially speaking (and frequently alcoholically speaking), so they paid for the past two rooms, which was very nice.

Anyway, there's the good and bad in my life right now. Just trying to make most moments count and enjoy myself.
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Post by Wosbald »

+JMJ+
Cagliostro wrote:[…]

… Just trying to make most moments count and enjoy myself.
Always sage advice.

Thanx for the update. Continued prayers.


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Post by peter »

Ah, family! What are you gonna say!

I've never done an escape room (if I have it right, they're themed rooms where you have to solve a series of puzzles to escape - we have one a few miles from where I live), but have fancied having a go. I can get a bit claustrophobic though in locked spaces, so it might not be the best idea.

Fingers crossed for a good result from the new chemo Cags, and hoping that the side-effects are not too debilitating.

Thoughts and good vibes from the UK my friend!

:)
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Post by Avatar »

Thanks for the update Cags. You thought of trying some medical marijuana for the nausea? ;)

Never been a fan of the escape room thing...sucks that they wouldn't let you finish either.

Still, keep on keeping on. And if more people were forthright about their emotions and their situations, perhaps it wouldn't be the taboo that it has become.

Thinking of you man. ;)

--A
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Post by Fist and Faith »

The first thing Cags said to me when we met, right after "Hello" and we sat, was, "So! I hear the big new in your life is..." and I'm thinking What? What big news could he know about me that I can't think of?? "you're modding the Tank!"




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Post by peter »

Good luck with that!

;)
The truth is a Lion and does not need protection. Once free it will look after itself.

....and the glory of the world becomes less than it was....
'Have we not served you well'
'Of course - you know you have.'
'Then let it end.'

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Post by Cagliostro »

Well, the new chemo seems to really be bringing down my kidney functions, which were just fine before, but part is a bit my fault because I can't seem to get enough water in me. I have to go in and get hydrated, and the chemo leaves me barfy, so it is hard to get the water down, at least at the levels they are recommending, which is about a gallon a day, which is way way more than I'm used to. I can't figure out a good enough system that keeps me drinking it.

I'm still working, but working from home and am definitely being given an amazing amount of leeway, so occasionally I'll sneak in a 10 minute nap which is very necessary. However, yet another fucking government shutdown may be happening soon, in which case I'll be forced out of work due to being a government contractor. I've gone through these furloughs several times, and contractors always get the rawest deals in these. The government employees often get paid back, but the contractors get fucked.

Also, they have been having trouble filling the position by the previous guy, and there is word that they will push me into another position who probably won't have as understanding a boss if we do get someone hired, so it may look like my working days are nearly over. And I plan to retire at the new year if I am still around. Because that is also when I plan to retire from treatment, even if it is effective. It's getting pretty tough to carry on, and quality of life is at an all time low. I keep thinking it is about time to go under the porch and await the inevitable.

So, despite all these stressors, I'm still learning things and experiencing life and exploring, which I think is what life should be about, and have throughout most of my life. I've never been much of a religious man, but I find myself hoping for Something Beyond because I want to look forward to a brand new adventure instead of just blipping out of existence. Which is nothing new with humanity. If the model of Buddhism turns out to the be the correct one, then I suppose I'm not quite ready for Nirvana yet. I still have a bit more suffering to do.

Meanwhile, I have been trying to get down as much of my life in my memoir of sorts, and to borrow a metaphor from Douglas Adams, feels like I am in a burning library, and I'll trying to grab as many books off the shelf as I can to salvage. I doubt I'll ever be able to organize them so it will be a bunch of confusing writings with attempts at a timeline, but I started before I got sick and started with a chronological telling of work, then have talked about the loves in my life. I'm nearly done with that. Once that is done, I'll probably just hit on MUCH smaller topics and try to get all the stories out as I can that don't take nearly as much time.

And while I'm super bummed that the second Horizon Zero Dawn game isn't coming out until February, which means I'll probably never get a chance to play it, at least my son who says his favorite game of all time is the first one, will have something joyful and escapist to fall into and immerse himself in after I pass. Plus, he has been saving up his monies and wants to buy a Nintendo Switch, so we went ahead and bought it on his behalf, and will present it to him on Saturday after his sister's birthday party. I bought Zelda: Breath of the Wild (for escapist immersion) and Mario Kart (for multiplayer so that I can play a bit before hang up my controller).

I mentioned to one of the nurses at the cancer center that I was learning bass but had been in bands before as a singer, and she wanted me to sing a song, so I did. Then another nurse wanted a request later on, so I recently did that, and decided if I was doing songs for them, I'd do one for me as well. The first wanted Rio by Duran Duran as that was one of the band I was in main influence at the time. And the other requested Lionel Richie's Hello as they had Lionel Richie songs at her wedding. So I chose mine to be That Funny Feeling from Bo Burnham. They all went over well, and I let them know I was giving back as they had given me so much care over the past year plus.

Still trying to keep every day a party, and give as much as I receive.
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Post by DoctorGamgee »

I think trying to get the stories down is a great idea. My mother, while she was working took time on her lunch hour to type up family vignettes. They rambled from one topic to another, one child to another, one crazy thing to the next. They are priceless, both in their telling of my family's story, but also in the reflection of her tales.

I am sure they will be appreciated in their haphazard telling.

Here's hoping for easier times and no shut down.

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Post by Fist and Faith »

Seriously, the haphazard nature of the writings would not be any remote drawback. In its own way, it's more personal. Getting to see your mind as it naturally moves, sometimes smoothly, sometimes jumping for no reason the reader is aware of.

Don't forget to write about us!

In short there's simply not
A more congenial spot
For happily-ever-aftering
Then here in Camelot!
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And disregards the rest
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Post by peter »

How does one go about chronicling one's own life though? I'm not sure if I could do it; I'd get lost between writing for myself and writing for the reader. Would I make it a joke (it hasn't been), a tragedy (that would slip into farce), a 'warts and all' account (I'm not sure I'd want posterity to know that much about me)?

Zelda; Breath of the Wild eh Cag - seriously open world and very highly rated; but don't give up on the new Horizon game....... your body will make these decisions for itself when the time is right my friend; It knows its stuff - it's story is four billion years in the telling and written in every strand of DNA you possess. That story may have an end - but certainly not here, certainly not now.

Peace and respect

Peter.
The truth is a Lion and does not need protection. Once free it will look after itself.

....and the glory of the world becomes less than it was....
'Have we not served you well'
'Of course - you know you have.'
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Post by Avatar »

Also, y'know, reach out to the developers, tell 'em you're dying and is there an early build you can see before you go...you never know...it's been done for people before. ;)

As for the whole "more" thing, I totally get it. My biggest annoyance with the "end of everything" is not getting to see what happens next.

Still, I console myself with the thought that the entire universe will end with me, so I won't miss much. ;)

Chin up Cags, thinking of you.

--A
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Post by deer of the dawn »

peter wrote:How does one go about chronicling one's own life though? I'm not sure if I could do it; I'd get lost between writing for myself and writing for the reader. Would I make it a joke (it hasn't been), a tragedy (that would slip into farce), a 'warts and all' account (I'm not sure I'd want posterity to know that much about me)?
...

Peace and respect

Peter.
I've thought about doing this. If and when I ever actually get started, I would write stories. Not a chronicle of my years, which would be boring and who cares, but I do have some ripping good stories (some happy and some sad) and that's what I would focus on.

So, Cags, write down little or big stories of stuff that's happened in your life.
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peter
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Post by peter »

Agreed - good advice!

:)
The truth is a Lion and does not need protection. Once free it will look after itself.

....and the glory of the world becomes less than it was....
'Have we not served you well'
'Of course - you know you have.'
'Then let it end.'

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Post by deer of the dawn »

Just checking in. I wish Cags would leave his job with or without a shutdown, and write his stories.
Be kind, for everyone you meet is fighting a great battle. -Philo of Alexandria

ahhhh... if only all our creativity in wickedness could be fixed by "Corrupt a Wish." - Linna Heartlistener
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Post by peter »

Might not be possible, but seconded anyway.

:)
The truth is a Lion and does not need protection. Once free it will look after itself.

....and the glory of the world becomes less than it was....
'Have we not served you well'
'Of course - you know you have.'
'Then let it end.'

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Post by Cagliostro »

Hello all.

Well, it's been another little while. Due to my hernia, it's hard for me to sit up much anymore. I still am working, and that is the sitting up portion of the day. Thankfully there is precious little to do these days, although now we are expected to cut 60 hours of our time between now and New Year, so fuck those Scroogical muthafuckers who fucked up by approving overtime for some and now the rest of us who are already in negative PTO get fucked. I'm thinking of just putting in the time I normally would and say that I'm saving the rest of the time for the end of the year, and then take that time off, and once that time is "over", quitting right then. I'll still have insurance that way.

That is, if I don't quit earlier. I don't particularly want to work until my dying day, but honestly....I have nothing else I'm doing during the day, and if I wanted to or felt up to it, I could be working on my writings. I kind of finished up to a small degree the big dialogue that I had going, and now I just want to tell stories, but am thinking of filming those so that they can see me speaking these words and telling these stories. Meanwhile, by working, I keep money coming in for the family and can try to extend my time.

I have been determined for some time to quit working and treatment at the New Year anyway, and begin my final phase of life as a Lotus Eater. Drug me up to be "comfortable." I've earned it.

At the last meeting with the doc, he said that it would be possible to make my goal of having one more Christmas, but that it might be more possible by quitting treatment. Regardless, I am going to see the results of the PET scan and see if the new chemo is being effective. If not, wondering is over at that point, and treatment is over. If it is, I might just do another couple and call it a day. It's been getting harder and more painful each time, and I suspect I'm causing additional damage to my body by continuing, but if it keeps this body propped up a bit longer until I reach my goal of seeing my final Christmas, then I'll fight for it, as shitty as I feel each day.

I've been leaning a bit here and there on the pain pills, more than I used to, which are mild and allow me to keep my brain. And I still feel the pain. I just care a bit less about it.

I saw a kidney doctor who said I was draining the stomach fluid too often, which may be some of the cause of the kidney damage. I was originally told when I asked how often, "Oh, you'll know. When you feel you need to." Which really hasn't been good enough. So I've been trying to go an extra day, which then causes my belly to be too full and my hernia to hurt like a motherfucker. So it is yet again one of those balance things. Do I want to deal with the pain of an over full belly or cause a bit more kidney damage? No easy answers.

I ordered some Tommy Chong brand CBD oil based on an internet ad. I probably shouldn't have, but I figured if anybody knew how to get the best out of hemp, it would be Tommy Chong of Cheech and Chong. No THC in it, so there will be no high, but it is my first step toward Lotus eating. If it gives me any relief at all, then yay.

Overall, it is definitely getting harder every day, and I'm about ready to throw in the towel. I watched a movie called "A Ghost Story" with Casey Affleck and Rooney Mara about a guy who dies and goes back to his home, watching his wife go through the grieving process and just mostly observing everything around him without being able to affect much at all. I've been kinda feeling the same on my downer days especially since the kids seem to be having trouble wanting to be around me, which I understand is how they are coping with the pain of it all. But it is still sad. It makes me feel like a ghost in my own life, and I wonder some days what I am still doing here. But I remind myself that I'm still getting excited about things, and we all still have huge laughs and lots of fun on occasion.

The other day, my son Desmond was saying some stupid phrase like "little kitty" over and over again, and I joined in making a noise in between his saying this. It was one of those rhythm things that felt kinda good, but mainly I kept it up to see how long my wife, who was in the room at the time, could take it. I was surprised that after at least a solid minute or more that she hadn't told us to shut up yet. That was when Desmond shifted gears and ended it by saying "Thank you for coming to my Ted Talk." Tears of laughter ensued. That's just a small taste of the fun we still are having, and it makes it worth it.

That's all the energy I have for this right now. I will try to update when I find out about the PET scan in a little over a week from now.
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Post by peter »

Great post Cag - one that captures the ups and downs of your situation but never strays into self-pity or being maudlin for a moment. How the frick do you do that! ;)

Wow - Cheech and Chong! There's a name from my past. Had an album called The Wedding Album when I was about 18 and absolutely loved it! Two seriously funny guys.

The filming idea sounds great, especially if you are able to sort of tie it into your writing so that the thing runs like a kind of coherent whole - almost like a mix of a visual and written narrative following a single story arc.

Good luck for the PET scan results my man! Here's hoping that they are as good as they can get!

:)
The truth is a Lion and does not need protection. Once free it will look after itself.

....and the glory of the world becomes less than it was....
'Have we not served you well'
'Of course - you know you have.'
'Then let it end.'

We are the Bloodguard
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