In Memoriam: Cagliostro

[peter]

Absolutely willing for the best results possible Cags! Tough guy - indomitable spirit!

[Menolly]

Hang in there, cag. You got this.

[Wosbald]

+JMJ+

Thanx for the update.

Continued prayers.

[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.

--A

[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.

[Avatar]

Hey, Anada, been a while.

Good to see you around.

--A

[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?

[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.

[sgt.null]

We're praying for you. Stay strong.

[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.

[Fist and Faith]

Hang tight!

[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? )

--A

[Cagliostro]

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.

[Menolly]

[Avatar]

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?

--A

[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!

[Savor Dam]

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.

[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.

--A

[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?

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.

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.

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!

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

Doesn't life just throw some curveballs!!

[Cagliostro]

Yes, I do work the rest of the day after infusions, but it is my choice because otherwise I'd have to make up the time or use PTO. I started at this place I'm working now in February, and was diagnosed with cancer in April, if I remember correctly. So my paid time off had not built up at all before the million tests and all the time off I needed to take care of some of this. Something I am particularly proud of was that I had negotiated an extra week of PTO before starting because I really wanted to have time with the kids to have an actual vacation, which is now a beautiful dream that I won't see for a while. But what it means is that instead, while they allowed me to go into negative PTO to make it all up when I can, I haven't run out of paid time off because my rate of accrual is such that I'm making it back up about as fast as I am using it. I would absolutely love taking that time off after my infusions, but before the Benadryl, there were no negative effects at all and I could just go ahead and work. Now with the Benadryl, I sometimes take some extra time to try to wake up a bit.

By the way, later that day after accidentally having the cup of coffee, I started having a bit of a reaction and my face turned red, but nothing bad happened beyond that, so it made me realize that I just need to stay away from the coffee on infusion days. Bah!

And yeah, my bad days are not day 1 of the infusion, but days 3, 4 and 5. It used to just be day 3, where I would feel sore and awful, and now feverish, and has now expanded to day 4 is a bit more feverish but better than both 3 and 5, and day 5 is where I tend to really get sickly and the fever tends to spike on these days, and I feel bad until about suppertime, when I feel all better and come out of it all. So has been the trend. But again, every week holds a new surprise.

This week's surprise - fungal infection on my scrotum! Yay! It's like the opposite of Christmas!