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Cag's Depressing Cancer Thread
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PostPosted: Wed Apr 29, 2020 10:48 pm    Post subject: Cag's Depressing Cancer Thread Reply with quote

I may very well re-brand this later, as the name "Cag's Depressing Cancer Thread" (put here for historical context when I think of something better) seemed funny to me to go full Eeyore and lean into it.

For those not in the know, and to speak the name of my potential killer, I have been diagnosed with metastatic adenocarcinoma stage 4 cancer. If they could find the source of it, they would be able to treat it better, but currently the Batman Investigations (what I am calling all the horrid tests I went through) have turned up empty.

I went to the ER a couple times because of abdominal pain. It was thought that it was inflammation from eating the wrong foods, but started to lead to lots of food being the wrong food, and I would get pain in my chest that I wanted to rule out heart attack. Never any heart problems, so they would give me a GI cocktail and I'd feel better and go.

At the end of Februrary, I went to an Urgent Care instead and he suggested going on to the hospital ER rather than the small ER near my house because they had access to more equipment to check things out. He said he suspected it was gall bladder related.

I went over and got checked in, and they checked things out with the gall bladder, but that all seemed fine. They kept ordering test after test after test, and in the end was told there was some scarring on my liver, and that she was sending me back to my general practitioner to say that I need a liver biopsy and to have them run things, but that this is very serious and get things going.

A visit to my GP later, and she said I should go to a gastroenterologist as I wanted to dump mine after an annoying problem with my previous one involving their staff that I won't go into. Scheduled in two weeks. After having previously taken 6 months or more to get things rolling on thyroid cancer removal, I figured this was par for the course.

When I saw the new gas doc, and I told him I was here to set up a liver biopsy, he looked pissed. I think my GP left him holding the bag and shouldn't have, and shouldn't have waited. He didn't say this, but I could see it in his face. After checking several things out, he came back and said we'd get that rolling and he'd recommend a cancer doctor.

I think the liver biopsy was scheduled a week or so later, right as COVID-19 was gaining a little traction in Colorado, but no shut down yet. After the biopsy, I was told they were sending the results somewhere else and that I would hear back about it.

Meanwhile I met Dr. Moazzum, a man with a pretty thick Indian accent, but one variety my former Kansan old man ears can understand better than others. He was highly rated on websites, and every doctor I mention his name to say he is one of the best, so I feel like I am good hands. Despite his horrible analogies and lack of bedside manner and great lack of information giving.

He said we would wait for the results, but meanwhile he wanted to get a PET scan done. Before the PET, the results came, and they were inconclusive. My gas doc suggested I get a second biopsy, and when I told him about the PET scan, he said let's wait until we see the results, and we'll go from there.

PET scan came back lighting up in multiple areas - abdomen, liver, neck, lung, pancreas, and probably some other places as my brain shut down with the constant emotional whamming of "HOLY SHIT!" going on in my mind. He said it is 92% cancer, and 8% just to be inflammation. Another biopsy would be sought, but left up to the IR doctor.

Found out within the next day or two that they wanted to take another crack at the liver. Got that scheduled, and now COVID-19 really was big everywhere, and we were working from home during this time. I might write something separate later about the effect the pandemic has had on this and some of the scary.

After the liver biopsy, it was known at the name above, even though both my wife and I, through the stupid Zoom meeting, heard Adreno Carcinoma. But we were wrong.

Roll in the number of awful tests to follow, of which my last few weeks have consisted of, including the horrible nightmare inducing pee pee hole scope, an endoscopy, several ultrasounds, and on and on.

I was told recently I would be getting a port, which I didn't know what it was, and would be started on chemotherapy. They wanted to do more tests in the meantime, including a mammogram to rule out, and another ultrasound on my giblets (well, mainly liver and bladder).

After that was scheduled and ready to go for Monday and Tuesday of this week and chemo on Wednesday, I got another call that said I needed to be tested for COVID-19 before I can go into surgery. They scheduled Sunday for that. Now this awful thing is eating in the weekends now too.
We had been holding off from telling the kids until we had a treatment ready to go. It ate away at me keeping it a secret as I am an honest father, and I could tell they knew something was up. We came up with a plan and got advice from a friend who is going through breast cancer treatment as well who has young kids (younger than ours) and her advice on that. It was worse than having the Santa talk, but they handled it pretty well. The questions and upset is still coming but just waiting for some of the bad stuff to hit them.

I tested Sunday for the Coronavirus, and on Monday was feeling warm. Partly because my car had been sitting in the heat, and it was 80 degrees that day, and I also hadn't gotten enough water. I had two appointments Monday - one for the mammogram, and the other for an ultrasound. Due to a misunderstanding, I thought the mammogram needed me to drink a certain amount of water, and needed me to go in with some in my bladder. So when I got to the mammogram appointment, I had a full bladder and was running over 100 degrees Fahrenheit. They cancelled my appointment after testing again after I had set again briefly. I also had a new mask that was tight and hot that I was using. I switched it for a cooler mask and they tested again, and it was under 100, but they said they would not allow the appointment.

The other appointment had right at 100, but then after sitting there a bit was allowed in with 99 degree temp. And I found out I didn't need to hold the water anymore and had a life affirming pee.

The port was put in yesterday, and despite everything I heard and was told, they did not knock me out for it, and had to be awake as they put something into my chest above my heart and wired it up to my jugular vein. That was very unnerving, and the excuse they gave was that they would need to intubate me if they put me under, and said no more, but I figured it was another drawback of the pandemic.

Today I got my first round of chemo, and it wasn't horrible, but I guess the worst is yet to come. I shouldn't have much hair loss - just thinning, they said. But the biggest side effect of the chemo coctail I am having (mainly called FOLFOX, but also known as the funnier 5-FU, which seems more fitting), is a severe cold sensitivity. They say putting my hand in the refrigerator will make it hurt like an electric shock, and drinking cold water will feel like I'm being choked with ice.

Also, I was given a pump, but I need to get some rest now and will continue later with a discussion of this albatross. I'll try to make another entry tomorrow.
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PostPosted: Wed Apr 29, 2020 11:18 pm    Post subject: Reply with quote

+JMJ+

Praying.



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PostPosted: Thu Apr 30, 2020 12:16 am    Post subject: Reply with quote

Hang tough brother. Rooting for you!
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PostPosted: Thu Apr 30, 2020 1:01 am    Post subject: Reply with quote

I like the thread title!

So much shit to go through just so you can continue to go through shit - referrals, tests, tests, referrals, deferrals (it seemed sometimes), inconsiderate doctors, covid-effing-19, telling the kids, etc.

Sending understanding thoughts from the other side of the world Smile
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PostPosted: Thu Apr 30, 2020 1:38 am    Post subject: Reply with quote

Strength, conviction, Love, and Light, Cag.

We're here for you, and Carla as well, should she need a place to journal and vent.
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PostPosted: Thu Apr 30, 2020 6:36 am    Post subject: Reply with quote

Damn Cag, sounds hell of a rough. (I fixed your paragraphs for you. Wink )

Well, as long as you can keep a sense of humour about it, then you're not too far gone yet. Wink

Will be thinking good thoughts for you.

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PostPosted: Thu Apr 30, 2020 9:47 pm    Post subject: Reply with quote

Avatar wrote:
(I fixed your paragraphs for you. Wink )


::laugh:: Thanks! I was brought up in a different time when we didn't need the extra spacing, but hey...it does look cleaner. I guess we all work with what we were given in college.

Thanks folks. I appreciate it all.

Ok, as promised, here's the story with the pump. It is a bunch of hoses and a heavy electronic device a little larger and decidedly thicker than an iPhone. And about twice as heavy.

They gave me a choice between a fanny pack and a carrier to go around my neck. The fanny pack was out because of all the grief I gave my wife over using a fanny pack when we met that I shamed her out of using it. And the neck carrier looked like something that I could pretend and possibly decorate to look like a bandoleer like Chewbacca wears, or at worse, wear like a man purse. Unfortunately, the straps are long enough to use this way, and hang from my neck like an albatross. Since I am physically attached to it and cannot remove it, I have been throwing on a belt that hangs loosely and dangles it, making me feel like Han Solo wearing a blaster. But mainly it is a pain in the ass, and will have to switch it out tomorrow for the fanny pack, and endure my wife's revenge.

Tomorrow I go back in to have the pump removed until Wednesday two weeks from yesterday. I was told I could learn how to remove it myself so that I don't have to come back in for office visits, which will be handy while I'm working from home. I will definitely ask about that tomorrow.

So far I'm having all kinds of weirdness that doesn't tend to last any longer than a minute, and is never quite the same. I've had stabby pain in several places not lasting much time at all, but awful for the few seconds they have lasted. I had a bout of dizziness this morning, which is a side effect listed of the drug. 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. I also drank a bunch of Gatorade, which they recommend for remaining hydrated, but I used the sugary kind. My pee almost instantly changed to smelling like what I have always associated with old men. They list foul smelling pee as something to call in about, but after I stopped drinking that and flooded with water, the smell hasn't returned. But it was there for about 3 occasions in total. I'll let them know and see if it is safe to continue that. My wife said it was more strong smell than foul smell, but I disagree.

I'm getting through it, but this first round has been rough. They said I will probably be on this for 6 months, and will probably remove the port after that. I hope this is the case, but after talking with others yesterday, it could possibly be that I then get switched over to another form of chemo and continue going for some time. As my cancer is unidentifiable at the source, I am hopeful that it will go into remission after this round of chemo, and will have a few years peace from it before it comes back. But it could be the opposite, and that would suck, and have a profound effect on my happy. The chemo is awful, and it sound milder than others, but I can definitely take it for 6 months, even building with intensity. It will become a new normal for me, and will probably get a bit easier then, but y'know.

I do plan to keep things as lighthearted as I can because a happier script is what I have to focus on. I'm starting to read Robert Anton Wilson again, which I haven't done in years, and already I'm finding this is exactly what I need right now - someone with a sense of humor talking about interesting and brainy stuff, but ultimately an optimist who doesn't take life too seriously. I thought a lot about his last words over the past few weeks and realized that is exactly how I should be viewing all of this and loving what life has yet to give me instead of constantly fretting about the well being of my family after I pass. Yeah, I'm terrified of that, but can only do what I can do and dwelling on that will only make me miserable.

I also remember something that has stuck with me for years that Robert Anton Wilson said toward the end when he was in a bad way for a while (post-polio syndrome, I think) was when he started feeling better again, and said that he is glad he is out of that for the moment so he could think about other people again. It struck me as so profound because we become so self centered when we are suffering, and I'm fighting to not be defined now as Cancer Boy, but I also want to talk about it and share my thoughts to those who might find it interesting and educational, as long as I don't get too depressing with it.

Anyway, take care all, and I hope everything is lovely for you all despite the times.
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PostPosted: Fri May 01, 2020 6:29 am    Post subject: Reply with quote

Cags wrote:
...and every doctor I mention his name to say he is one of the best, so I feel like I am good hands.
Love the sound of this - this is so encouraging!

Cags wrote:
and will have to switch it out tomorrow for the fanny pack, and endure my wife's revenge.
Oh my goodness...
...take this as one of the deep ironies of life.

Yes, when I had cancer, I remember some things that I thought sounded like horrible ideas... were suddenly open to consideration!

Best to you, Cags! Have been reading some updates.
I definitely like your Batman theme - and I will second Av's comment that your sense of humor is intact, and that is a VERY good thing.
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PostPosted: Fri May 01, 2020 7:23 am    Post subject: Reply with quote

You have permission to be mildly self-centred right now. Very Happy I know that's not your default position. Everyone has some level of self-centred-ness but you don't strike me as someone who craves to be the centre. In this case though, I say go for it!

Here's a random awesome song just for you my friend! End of the tour
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PostPosted: Fri May 01, 2020 12:33 pm    Post subject: Reply with quote

That's some bad and terrible news, Cags. I do appreciate you're sharing it with us like that, and I hope in some way it makes you feel less isolated than you might be. Keep fighting the fight.
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PostPosted: Fri May 01, 2020 3:28 pm    Post subject: Reply with quote

Keep us updated as you can Cag. Although I have never met most here in person, I have found that I care about the people here.

We are with you and sending you cheery thoughts and positive energy!

Cheers
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PostPosted: Fri May 01, 2020 10:06 pm    Post subject: Reply with quote

Whew...the last couple days have been a bit weird. I think the pump gives me the bad juju because I was doing pretty good until they pumped that mess into me.

I talked a little about the eye stuff, I think. I later had a bunch of pain in my eye and then it flooded with tears. I found that a side effect is blocked tear ducts, and I think that is what burst free in a fright-giving manner.

So the pump is supposed to give warning sounds when it nearing the end that the nurse said to just ignore, and gave the horrible sounding "I hope you are an early riser." Thankfully it was well after I woke today before that started, and it only beeped three times before giving the "all gone" alarm to turn it off, as well as the machine. Happy to have that stopped being pumped, but then I had to wait until the office visit to have it removed.

About 4 hours later, I went into the cancer center and got issued in faster than I had in the past. I asked some questions that I had, mainly about my eyes, and was reassured that it can happen and we should keep track of it.

I asked about being trained to remove it myself, and she quickly went over it, but because I had been rigged up by the hospital, she said it would be better to learn next week. So I agreed and tried to follow along. When it came to flushing out the port with saline solution, but needing to make sure blood pushes back into the syringe, and to be careful of not push air back in because of accidental death, I decided I might not want to play that game and leave it to the professionals. I might change my tune later, but right now, it is really just every two weeks.

Now it is out, and I'm going to take a well deserved shower. Tuesday morning was the last time I had one, and typically I don't feel right unless I shower each day. My hair is shambles with the shut-in hairstyle with my usual flopsy hair, and I hope to at least not look too 1970s by the end of the day.

Sometimes it is the little things that keep you going. This is definitely one I need right now.
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PostPosted: Sat May 02, 2020 7:05 am    Post subject: Reply with quote

Wow! Your story affects each and every one of us Cag, for we are none of us in this alone. I had a grumbling tooth when I woke up this morning; somehow it doesn't seem so important now.

Enjoy that shower my friend.

Respect from this side of the pond.
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PostPosted: Sun May 03, 2020 2:38 am    Post subject: Reply with quote

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

Well, maybe they were.

This sounds like no fun at all. Good for you for keeping a positive attitude.

I am not hearing the part about stage 4 and...that other word you said. Not. Hearing. (ali sticks her fingers in her ears) LALALALALALALA
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PostPosted: Sun May 03, 2020 6:09 am    Post subject: Reply with quote

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

Well, maybe they were.

This sounds like no fun at all. Good for you for keeping a positive attitude.

I am not hearing the part about stage 4 and...that other word you said. Not. Hearing. (ali sticks her fingers in her ears) LALALALALALALA


Laughing That's our Ali! And agreed - the seventies had it's good stuff too like .........

errr like.........

(Somebody help me here I'm sweating it!)......??....???........

Eureka

Loons! Very Happy
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PostPosted: Mon May 04, 2020 6:52 am    Post subject: Reply with quote

Like not being as appalling as the 80's? Very Happy

Cagliostro wrote:

::laugh:: Thanks! I was brought up in a different time when we didn't need the extra spacing, but hey...it does look cleaner. I guess we all work with what we were given in college.


Eh, learned that long before college (university). Guess it's default here. Very Happy Just makes it easier to read, though it does take up more space.

As for the little things...all things are little things in a sense. Wink Glad things are as well as they can be expected to be I guess. Keep venting.

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PostPosted: Mon May 04, 2020 10:19 am    Post subject: Reply with quote

We love you Cags ♥️♥️♥️♥️ so, so much ♥️♥️♥️♥️

Sounds like your doctors are all over it ✊ which is so good to know 👌

We are community dude .. a family of watchy Watchers 😉 so as sibling hood demands action, I volunteer to kick your scrawny butt ... whenever you need a butt kick and give you a wet willy when needed lol 😂

Stay strong 💪

I been away for a while hunting surreptitiously, ninjerly koalas .. so missed your earlier posts ... but one of our little islander Watchers contacted me. Sending you health, healing, positive vibes and lols 😂 cuz life is better with lols 😂😘😘😘😘
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PostPosted: Mon May 04, 2020 5:47 pm    Post subject: Reply with quote

Sorry Cag.
My wife went through a horrible cancer procedure/process 10 years ago.
Nothing like what you described but it was pretty aggressive and chemo resistant and the outcome didn't look good for a while but after a long hard fight she's been cancer free ever since.
Keep fighting and best of luck.
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PostPosted: Mon May 04, 2020 9:10 pm    Post subject: Reply with quote

i'm not handling this very well. that's why I haven't commented or sent hugs or anything. this is my m. o. I just pop my stupid head in the sand.
sorry about that. i'm just worried for you and Carla and the kids.
if there is ANYTHING I can do please don't hesitate to call. will make a pm with my phone number in it (you may still have it from the Thelma and Louise tour but will send it any way in case you don't.)

i'm just down the road a piece. i'll come at a moments notice for whatever you might need. I have masks and gloves and stuff so...
yeah.
just call if you need me.

Hug
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~ george clooney, inside the actor's studio



a straight edge for legends at
the fold - searching for our
lost cities of gold. burnt tar,
gravel pits. sixteen gears switch.
Haphazard Lucy strolls by.
~ dennis r wood ~
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PostPosted: Mon May 04, 2020 9:32 pm    Post subject: Reply with quote

I wish there was something more tangible that we could do to help Cags but every member of this forum is here to support you and all of us extend our thoughts and prayers to you. My family has had its share of cancer and though the process of treatment is never easy I have witnessed loved ones endure through to remission. I hope for the absolute best for you.
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