In Memoriam: Cagliostro

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Savor Dam
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Post by Savor Dam »

Hang in there. It isn't pleasant (it sucks!), but it is absolutely worth it to come out the other side and be in remission.

Good call on keeping track of how chemo affects kidney function. Menolly's walking chemo for her leukemia had to be changed in the first year because it was adversely affecting her kidneys. It wasn't the oncologist or hematologist who picked up on this; it was her primary care doctor. Having multiple sets of eyes on the data really helps.
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Post by peter »

Absolutely willing for the best results possible Cags! Tough guy - indomitable spirit!
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Post by Menolly »

Hang in there, cag. You got this.
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Post by Wosbald »

+JMJ+

Thanx for the update.

Continued prayers.


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Post by Avatar »

Well, like everybody else, here's hoping for the best possible result Cag.

Let us know how it goes and we'll celebrate with you. :D

--A
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Post by Ananda »

It sounds like a terribly rough time. Glad to made it to the end it of the treatments. I’m really hoping you get the best results after all this.
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Post by Avatar »

Hey, Anada, been a while. ;)

Good to see you around.

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Post by Fist and Faith »

I wish there was something I could do to help, Cag.

But hey, don't miss out on golden opportunities. If someone asks if it hurts, what's your answer?
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Post by Cagliostro »

Sorry, I just realize that I didn't post my update here. So here it is.

The chemo is working. Some spots have disappeared altogether on the PET scan and others have shrunk down considerably. The doc is very positive about it all. But unfortunately I have to do another 3 rounds of 3 treatments on the same chemo that have been especially difficult for me. If I can just muscle through this, I might just be ok and things might go into remission. But I have to continue from where I left off, and shit is probably going to get worse. But better than the alternative, right?

So, onward and forward and hope continued misery is worth it. I start my next dose tomorrow. Ugh.
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Post by sgt.null »

We're praying for you. Stay strong.
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Post by StevieG »

It's awesome that the chemo is working, and really shitty that you have to go through more. Thinking of you from the land of Oz.
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Post by Fist and Faith »

Hang tight!
All lies and jest
Still a man hears what he wants to hear
And disregards the rest
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Post by Avatar »

Yeah, a lot better than "It's not working" right? ;)

Here's hoping progress already made means you don't have to have as much more as feared.

(Doesn't hurt to hope right? ;) )

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Post by Cagliostro »

Fist and Faith wrote:I wish there was something I could do to help, Cag.

But hey, don't miss out on golden opportunities. If someone asks if it hurts, what's your answer?
The answer is, honestly, no. I've not really felt pain in the parts that are affected. But, on the bad days, my legs hurt to the point where I wonder if I can walk, and my knees tend to buckle a lot. I get these pains at random throughout my body, some lasting a few seconds to about a day and then go away. Possibly because I'm spending nights in different places to try to cope with the pain and often lack of sleep. Some in the bed with my wife, and some nights in a recliner in the living room. They both have their benefits and their drawbacks.

So first of 9 treatments down. Super sleepy right now from the Benadryl. This infusion was early, so I have to get through 5 hours of work, which is exhausting. I may have to occasionally stop for a nap here and there, but keeping my mind going is the best way to stay awake.

I made a mistake this morning. When I had my reaction on the other flavor of chemo, I had coffee in the morning before going. Since then, I have not been having coffee on the morning of the infusion, and the first time I had coffee after the infusion, my face went partially red, which I'm told was probably due to the steroids. So I've been superstitious about it since.

This morning, the wife was brewing a new pot of coffee and I wanted in on it, forgetting my rule. After I finished it, I remembered, and was nervous during the treatment. I let the staff know, of course, and all was fine. Which means I can probably have coffee the morning of, which is good because it keeps my bowels moving.

Oh, the things I never thought I'd be discussing on this forum a year ago.
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Post by Menolly »

:hug:
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Post by Avatar »

Cagliostro wrote:This infusion was early, so I have to get through 5 hours of work, which is exhausting...
Uh, your work doesn't let you take your treatment days off? WTF?

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Post by Ananda »

Great news that it’s working. Sorry it’s so awful, though. On the nights where I felt like I could barely breathe and was afraid to sleep because, when I did, I’d wake up gasping for breath. I got through those nights one minute at a time, sometimes, one moment at a time. But, I got through them. You can do it, even if it is horrible. It will eventually end. I don’t know what you use to distract yourself, but I used YouTube. I watched dozens and dozens of hours of the most absurd things like a guy documenting his life on a narrowboat in the English canals, a painting restoration guy scraping old glue off the back of a canvas for two hours, etc. Any non-challenging distraction from the moment can help. So glad to read the news is good.

And, coffee is great for regularity!
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Post by Savor Dam »

Avatar wrote:
Cagliostro wrote:This infusion was early, so I have to get through 5 hours of work, which is exhausting...
Uh, your work doesn't let you take your treatment days off? WTF?
No personal experience here, but based on what I've learned from the cancer survivors in my life, chemo treatment days are light on side effects; the days that follow are worse. If one is trying to work when able, treatment day can be a day to build a small lead before the less-capable days that will inexorably follow.
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Post by Avatar »

Ok, lets hope that's the case. I know your American sick leave and stuff is all messed up in a lot of places. :D

--A
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Post by Fist and Faith »

Cagliostro wrote:
Fist and Faith wrote:I wish there was something I could do to help, Cag.

But hey, don't miss out on golden opportunities. If someone asks if it hurts, what's your answer?
The answer is, honestly, no.
No No No! The answer is, "Only when I laugh." Very old joke. But we're a group that love laughing Giants, so we're going to run with it. I suspect you'll remember the next time someone asks you in rl.
Cagliostro wrote:I've not really felt pain in the parts that are affected. But, on the bad days, my legs hurt to the point where I wonder if I can walk, and my knees tend to buckle a lot. I get these pains at random throughout my body, some lasting a few seconds to about a day and then go away. Possibly because I'm spending nights in different places to try to cope with the pain and often lack of sleep. Some in the bed with my wife, and some nights in a recliner in the living room. They both have their benefits and their drawbacks.
Yeah, women are like that.

Oh! Did you mean the different places you sleep? My bad.
Cagliostro wrote:So first of 9 treatments down. Super sleepy right now from the Benadryl. This infusion was early, so I have to get through 5 hours of work, which is exhausting. I may have to occasionally stop for a nap here and there, but keeping my mind going is the best way to stay awake.

I made a mistake this morning. When I had my reaction on the other flavor of chemo, I had coffee in the morning before going. Since then, I have not been having coffee on the morning of the infusion, and the first time I had coffee after the infusion, my face went partially red, which I'm told was probably due to the steroids. So I've been superstitious about it since.

This morning, the wife was brewing a new pot of coffee and I wanted in on it, forgetting my rule. After I finished it, I remembered, and was nervous during the treatment. I let the staff know, of course, and all was fine. Which means I can probably have coffee the morning of, which is good because it keeps my bowels moving.
Well then do it up real good on those mornings! What's the best possible cup of coffee? That's what you need!
Cagliostro wrote:Oh, the things I never thought I'd be discussing on this forum a year ago.
Doesn't life just throw some curveballs!!
All lies and jest
Still a man hears what he wants to hear
And disregards the rest
-Paul Simon
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