In Memoriam: Cagliostro

[Cagliostro]

Why does everybody poop on the '70s? The hairstyles weren't *that* bad.

This is probably the wrong person or place to be telling this to, but 70's bush still does it for me. What can I say? I like women, not little girls.

And Lucimay - don't sweat it. I do the same thing. It's hard to put into words anything that doesn't sound like something else everybody else is saying. I have a friend who pretty much hasn't said anything to me since I told him, and I know it's the same damn thing - paralyzed by not wanting to sound trite.

I'm learning a lot about human nature right now from the responses I've been getting, and it honestly is pretty damn heartening. I also see a lot of people that honestly want to help but feel powerless because, well, what can you do? So we are getting people from all over trying to beg us to get a second opinion (which has pretty much happened now because of the neck biopsy), and to take other options because I know they are people that are used to taking control of a situation, and they can't take control of this. Their heart is in the right place, but at times (like my mother-in-law and my actual mother) bringing this in days before the first treatment really put extra stress on Carla. It's all cool now, and was sorted out, but it was one of those kinds of help that wasn't very helpful in hindsight, with trying to figure out how to get test results to some cancer superman in Tennessee or whatever and should we hold off treatment until after, etc.

I'll keep updating as I can when I can. I had a horrible day on Saturday on a dreary looking day and we were all in a pissy mood, and I think I got the first taste of how awful this whole struggle is going to be, and I understand will intensify as treatment goes along. I've tried to figure out how to put it into words, but the best description is that it felt like my soul was detaching from my body - not in a death way - but it just felt like my skin suit didn't fit right, and things weren't working so well anymore. But today I feel mostly normal again, and while on Wednesday and Thursday my white blood cell count should be low enough that I can't risk going around other people outside of my family, at least I expect I'll have a week of normal before the next round. It's all adjusting to expectation, but ugh....I do not look forward to feeling again like I did this last Saturday.

[Khaliban]

I've tried to figure out how to put it into words, but the best description is that it felt like my soul was detaching from my body - not in a death way - but it just felt like my skin suit didn't fit right, and things weren't working so well anymore.

That's dissociation. It's a normal coping mechanism for stress. Your brain was buffering, that's all.

[lucimay]

I've tried to figure out how to put it into words, but the best description is that it felt like my soul was detaching from my body - not in a death way - but it just felt like my skin suit didn't fit right, and things weren't working so well anymore.

That's dissociation. It's a normal coping mechanism for stress. Your brain was buffering, that's all.

exactly. buffering. was gonna say the same thing.

we're all here for ya Cag. we love ya. I don't know what else to say other than that.

[Avatar]

Sometimes that's all you need to say LuciMay.

--A

[peter]

Your comment about not saying anything for fear of sounding trite is absolutely bang on Cag. After reading your first post(s) I wrestled with this.......

There just seems to be nothing that you can say that comes out not sounding naff.

But the key point is to get that the thoughts are inside you out - and rely upon the good sense of the recipient to filter them into the way that he or she knows they were intended.

[lucimay]

Sometimes that's all you need to say LuciMay.

--A

[Cagliostro]

Sorry I've been away for a bit. I've actually been doing pretty well, but have found myself torn in a heap of different directions, partly due to my son's upcoming birthday on Sunday, but also because of the extreme generosity of the people that I work with. They all pitched in a bought me a few things to make life feel worth living. Such as a bunch of things designed to make me feel better while doing chemo, like lemon drops, a tea collection, some ginger drops for my throat, and a Yoda mindfulness book that I adore, to a Disney+ year subscription, the Final Fantasy VII remake on PS4, and a $200 Grub Hub gift card. I had to track down a Roku as my PS3 doesn't do Disney+ and the PS4 is down in the dungeon where we don't tend to watch television.

So yesterday was round 2 of chemo. Had the eye problems return a bit more intensely, and called the doc to make sure I don't need to go to an eye guy to make sure there won't be permanent damage to my vision. After a long round of the game of telephone, I was told that I may be having a stroke, and that they want to schedule an MRI after I get my pump out. But to go to the ER if things continue or I start having other signs. WHOMP! Oh, and to get some aspirin which we don't have around the house.

My wife had to go out and get the aspirin, and I had the kids stay with me and we'd do a test every 15 minutes to make sure everything was cool with me, that I could say my name and date of birth, could smile with both sides of my face, and could say a simple sentence. All was good. Even though I did have another eye darkening at some point.

This morning, after taking a drink of water, I had the cold sensitivity, and was talking with my wife when suddenly my tongue felt like it had swelled, and I spoke with a bad lisp. I was forming coherent thought, however, and worried about a stroke. My wife said to hold on, and it went away within 3 minutes. We spoke with the assistant to the doc again, and she said that can happen as a reaction to the cold, and that she personally doesn't think it is a stroke.

My personal theory about the eye is that it is light sensitivity, as it happens after waking up, staring at as screen too long (in fact, I just had another at the end of the last sentence, and it looked like screen "burn in"), or after rubbing my eyes.

Regardless, tomorrow is the MRI and I'll know for sure. Sure is scary to add another damn thing to this.

In the world of the positive, I had my mannogram (the male version of the mammogram) on Tuesday, and the results were that there was nothing there, and couldn't be the source of the cancer.
Also, before my infusion, I had a meeting with the doc who told me that the blood draw they took looked "very good," and suggested that the chemo is working. He also said he did what I think I heard as gene testing, and it looks like the primary source of the cancer is either the gallbladder or the pancreas. Both of which receive the same treatment, and is the treatment we are currently giving me, so yay! So the plan is to be stayed with.

That's all I've got for now, other than I don't think it was dissociation in what was discussed earlier. I know what that feels like, and it wasn't it. It was more of a physical sensation than that. In fact, one of the other first timers was there at the time I was in, and we discussed our first week. He had no problems whatsoever, which I was glad for him. But he did say the worst of it was very similar to what I had, and we both found it so hard to describe, but he agreed it was a physical sensation that was just weird. Anyway...

[Skyweir]

THAT IS AN ABSOLUTELY BRILLIANT UPDATE ... Im stoked for you that its likely not a stroke thing but hopefully the MRI will confirm that.

Great news about the bloods etc ... good going you.

Keep up the brilliant work you little ripper you

[Cagliostro]

The MRI is done, and I was told that there are "no significant infarctions." Whatever that means. Not the full reassurance I wanted, but hey ho, I guess I'm in the clear for that.

It was weird getting a head MRI. The machine was super noisy, but they put in earplugs and I was good. I was reading about Robert Anton Wilson's first peyote experience right before being drawn into the room, so I thought about that, and kept myself calm in the enclosed space. I just closed my eyes, imagined I was on a drug trip, then imagined I was on a space ship with all the whizzing and banging and air being blown at weird intervals, and ended up falling asleep. Partly because some of the vibrations from the loud noises I chose to think of as massage, but partly because my sleep has been sucky lately. They pulled me out later to inject in the IV a "contrast," and then 6 minutes later, I was done.

Now I go back to the worry that maybe I should seek out an eye doctor to make sure that none of this will cause permanent eye damage.

[peter]

I love that aspirin is the go-to drug in even these potentially nasty medical situations! Who ever it was that discovered that chewing willow bark (I think it was willow) could help in pain relief (known as far back as ancient Egyptian times I think, so probably even further) left a great legacy behind!

How long between bouts of Chemo Cag? Do you get a chance to recover yourself in between the hits?

[Avatar]

It was indeed willow bark.

Well, glad the process is in progress Cag, here's hoping all goes as well as possible.

What's the eye thing? You mention it as though you already discussed it...different thread?

Anyway, I get this weird eye thing too...very hard to describe...like I lose all my peripheral vision and everything else is...weird... I assume it's due to strain / too much monitor...it goes away eventually, but it's very unpleasant when it happens.

--A

[Cagliostro]

I had a weird eye issue while rubbing it that took longer than usual to go from blackish to normal that was about 30 seconds of panic inducement, but hasn't returned.

So, it has returned, and was much worse with the second round. What I'm figuring out is that it is kind of two things: blocked tear ducts and light sensitivity. When I look at monitors too long, particularly white ones, I occasionally get a little oval area of normalcy that looks like the shape of my eye, but around that, blackness, or even weirder, black and white squares that look like big blocky pixels. Sometimes when I wake up, I get a sudden negative where it is darkness and an area of normalcy. It only lasts for at tops 10 seconds, but it does seem to be getting a bit longer. I've been off the pump now for 3 days, and had a little reaction this morning to being out in the sun with the kids for a bit. I realize I said 30 seconds above, but I don't think it has lasted that long.

So I am doing infusions every other week on Wednesdays. One week on, next week off, which I am happy about because right now it does mean that I get to recover before the next round. Last week, I felt normal before having to do it again, and in fact after the initial weekend, I felt pretty much back to normal.

I'm still experiencing a few of the side effects today, which is mainly cold sensitivity. The first week, just a few pricklies when touching something cold, or drinking something cold. This week, definitely touching cold was a big electric zing, and drinking even room temperature drinks at first made my throat feel like it had turned to ice crystals, but the most accurate is to say it felt like I hadn't drank anything for a while and was getting flat dry crusties in the back of my throat. Last night was my son's birthday, and we got him ice cream cake for his birthday from a local ice cream place that is one of the best I have ever been to. My cold sensitivity was mostly gone except on my tongue. I was determined to eat the ice cream cake anyway, but took a small piece. When it would touch my tongue, it had the sensation like there was Pop Rocks or fizzy candy in the ice cream. It was a strange sensation, but at least I could taste the flavor and enjoy it, and the other was a slight bit of a bonus, even if it got a little unpleasant at times.

From what I understand, the side effects will fade less and less, and I'll pretty much feel all of it all the time by the end, which will be torture, but hopefully it also means that it will have gone into remission and I can stop treatments again, at least until it returns, which if I'm lucky could be for years. I never understood what the "fight" they always talk about when they mention having a fight with cancer, but I suspect this is it; to see how much of the side effects you can put up with for as long as you can put up with them while the medicine does its job (if it does its job). With any luck, I'll have this treatment for 6 month in total, and it will be done, and I won't have to switch to something else, and it will be in remission, and I'll have many years of good health until it wakes back up again and starts being a nuisance. I don't know if I'm wrong about the level I am at, and to be honest, I don't know want to know if I'm wrong because I want to believe this is my future.

[Avatar]

Sounds like a doable future.

When I look at monitors too long, particularly white ones, I occasionally get a little oval area of normalcy that looks like the shape of my eye, but around that, blackness, or even weirder, black and white squares that look like big blocky pixels.

Yeah, very similar to what I experience, but mine lasts for several minutes, not just a few seconds. Happens very rarely, but very disorientating when it does.

--A

[peter]

I saw a film about Shackleton's failed expedition to the South Pole on Netflix or Prime the other day, and was absolutely blown away by the capacity of humans to endure. This capacity is innate in all of us, coming to the fore of it's own volition at need.

There is every possibility that it won't be needed here but if push comes to shove, it will be there.

Really pleased to see in a post above that you might be able to do some gaming while this is ongoing Cag! Never played Final Fantasy myself (seem to remember it being a almost wrestling like game with competition bouts that you partake as different fighters of your choice in. Have I got the right one here?)

The eye things have the same characteristics as the optical effects of serious migraines by the sound of them (yours too Av.). I forget the name of them, but I get very minor symptoms of the same occasionally, and even at this level they are frikkin' unpleasant!

[Cagliostro]

Yeah, I'm thankful my side effects are not completely disabling. At least so far. I'm not having much nausea, and I still have my head of hair, which is important for a Leo like myself to maintain my mane. I do have a very thick head of hair which new hairdressers always comment on, and while it has thinned a bit with the chemo, it is still there pretty much in full, despite my receding hairline. And my hair hasn't really changed colors, which leads everybody to not believe I am 50. My beard is peppered with white, though, which is the only giveaway.

I am having some unpleasantness with constipation, which some of it might be my fault since I started taking laxatives each day, which has led to more problems, and I read recently not to take them for more than a week. So now that I've gone off them, I'm having an easier time of it, strangely enough. Word to all of you out there because...let's just say Sunday morning ranks up there with one of my worst bathroom experiences ever. And that includes a bathroom on Beale street that I will not go into right now.

So the eye thing, the cold sensitivity, and the constipation aside, and the weirdness of the "skin suit" not fitting well like in the first Men In Black movie, it's been ok, and haven't really been in pain other than occasional aches and pains I suspect are normal for my age. Again, I feel a little lucky, but suspect everything will intensify as the treatments continue. At least I can still get around just fine and am not in constant pain. In fact, I noticed that the weird feeling Saturday thing went away a bit when I was active, as my son's birthday was Sunday and we got a basketball hoop delivered that day. I decided I would push through it and get the damn thing assembled, and felt pretty normal after we finished it, but then felt a little tired and nodded off several times before bedtime that night. The next day, we poured sand into the thing since it is one of the movable ones, and holding 50 lb bags of sand while waiting for it to run through a funnel six times was about my limit these days. But I felt really good while doing it, and realize that the more active I am on my weird days, the better I feel.

As for Final Fantasy, it is a RPG game, and #7 was one of the most well received of that series, which is why they made such a big deal of the remake of it. They completely fleshed out the story from what I've seen so far, and it's pretty damn good. I'm impressed so far, even though the cutscenes get a little long winded sometimes.

[Skyweir]

Good news Cags.

Seems like youve stumbled onto a great management strategy .. being active .. at least to the degree you can manage.

Also great news about your luscious head of hair lol

[peter]

Damn Cag- you sound like a better man on your weird days than I am on my good ones!

I'm going to check out the FF franchise - am at present just finding my feet in Kingdom Come Deliverance so it will have to go onto the list (headed "Stuff to play while I wait for Elder Scrolls 6 to finally appear!")

[Skyweir]

Oooh sounds fun

[Cagliostro]

Round three of chemo is underway. On the pump currently. After tomorrow when I have the pump removed, I will be a fourth of the way done with it.
Good news everyone! I have learned a few things about my eye issues from experimentation.
1. I had a mild version of the problem when I woke up from a nap during my infusion, which means that it isn't the pump chemo that is causing this, and takes a bit to sit in.
2. I've turned down the brightness on the screens I use for work that are white screens, and I've been wearing old person sunglasses that I wear over my glasses to assist. Since I've been home, I have had no incidents. Which pretty much proves that this is lightness sensitivity, and that I'm able to manage it this way. I could even bring on these things by squeezing my eyes tightly shut, and I can currently do this without the side effect.
3. My eyes have not been hurting, but have been watering quite a bit, which I believe has been due to another side effect mentioned that tear ducts become clogged. I'm not sure if it is a coincidence, but dealing with the light sensitivity has also made this better. Next round will show for sure.
4. I need to have my wife drive me to but especially from these infusions for my safety.

So overall good news that I know how to manage this scary side effect, and more bitterness toward the doc for the stroke scare. But in his defense, the information I gave was filtered through his nurse assistant and didn't come directly from me, which might have been more informative. Oh well. What's another $200 on top of all the other medical bills in this, right?
Ugh.

Constipation went so much better once I stopped taking laxatives, which is one of those paradoxes with medicine. I've been avoiding coffee as it upsets my GERD, but as I don't eat much food that triggers my GERD these days, I figured it would be fine to briefly indulge this vice again because it definitely helps me poo.

I saw a Facebook post from my cancer Bodhisattva that she is officially done with chemo now. She has stage 4 breast cancer, and now is getting scheduled for her surgery and then radiation, and then from there all the upkeep treatments. She said that her neuropathy was getting so bad they stopped early. I hope it did its job though, and am worried for her, but as long as they shrank it down to a manageable level, the surgery and the radiation should hopefully do the trick. She's been doing it since January, so here's hoping. She's looking forward to growing her hair back.

The only thing intensifying this time for me are some thumb cramps, which are short lived, but painful. I can pop them and feel better though, but it is like they want to curl up. I'm also kinda shaky in my hands this time. But again, all completely manageable and just fine. Gotta just keep pushing through until it is done, and manage what I can.

[Menolly]

Any answers on the source of all of this, Cag?