Adding poisoin from snaill for more more pain control

This poison has to be administired very slowly because of the crazy side effects.  It can cause psychosis and other mind problems if you don’t don’t it really slowly.  This is yet another trial I can get into if another guy can’t get into one he wants t because a conflict with medicationl…….

Nothing

Well a bunch of more tests later and no closer to an answer of any sort.  Best one I’ve heard is “Maybe the Chemo Emobolization wiped you out?” and only one doctor has ventured that guess so far.  So i’ll slowly try to build back up to the levels I was at, hopefully that’s possible. I can’t live relying on a cane and a wheelchair.  I don’t know how people do it and I have a lot more respect for them now.  If you have any ideas i’d like to them.  And thanks again to the people watching our kids.

Nathan

Collapsed

couple days after my surgery i fell down.  Felt like all the wind and energy had been sucked out of me suddenly.  Kimberly and the family were at church so I had to crawl my way to the bed and onto it.  Then spent the next 4 days in ER and being admitted to the hospital.  After dozens of test, pokes, prods, and labs they’re not entirely sure what happened,  either the cancer is progressing or some sickness decided to womp me, or…who knows?  Back home now.  Still really weak.  I need Kimberly around when I do stuff.  Going to go back to the hospital for some more testing.  It will be tough until/if/when my strength returns.  Huge thanks to those who watched our kids during things.  It was unplanned and long, so we owe people double or triple for their troubles.

Back from surgery

Mixed bag of some pain being gone and other new pain from the surgery.  The surgeon said it was a lot more complicated embolization this time because he had to go down several smaller paths instead of nuking one big area like he got to do the first time.  Unfortunately they also found a puddle of pus and blood that they had no idea where it was from down below my liver.  So the next day I got to have a second surgery to get rid of that stuff and they put in a new drain (AIGH!).  Supposedly this new drain will come out sooner because the abscess is  not in the liver this time and will come out in a week or two. I’ve heard that before so, we’ll see.  Thanks a ton to Grandma Olsen and Gaylene for watching the kids, can’t say how much we appreciate you guys, you are the best!  And thank you to everyone sending thoughts and prayers.

Off to surgery….

Time for some chemo embolization.  Say a prayer or wish me luck!

Fail #3

AlkPhos levels stayed the same, so no Clinical Trial for me right now.  Went yet again to the pain clinic and he cranked up the juice some more, worked good for a day or so, then it seemed to return to what I was feeling before.   This pain pump should be covering up just about all my pain but it hasn’t for some reason. Oncologist doc thinks I should just take more pain killer pills, but i’m not too much a fan of that, lots of side effects.

Next week they’re going to do another Chemo Embolization.  If you don’t remember, that’s where they go up a vein in your groin up to your liver, and send in a bunch of little chemo beads to a tumorous area and it destroys it all.  The target will be this new area causing me so much pain lately, and he’s also hoping it might bring my AlkPhos down to the point where I can get in the Clinical Trial too.  It’s an overnight surgical procedure, I think it’s scheduled for around new years, so someone might need to party in my stead (lots of apple sprite!).

On the bright side, Christmas was pretty awesome, got seat heaters for my car which is great for someone that’s always cold.  Got some nice cozy warm sock slippers (muk luks) and shirts.  And a nice telescope that someone from the Lounge suggested when it was on sale, which I haven’t gotten to use yet because it’s been snowing just about non-stop all week.

Fail #2

-le sigh- The infusion of lots of fluids brought down my AlkPhos some more but i’m still just a tad above the acceptable level to get in the clinical trial.  I get bloodwork and labs drawn on monday, that’ll be my last chance to get it below the needed level.  Anyone know of a quick way of dropping AlkPhos?  Hehe, didn’t think so.

Managed to get an appointment today with one of the alternative pain control doctors.  They sucked out all the new juice in the pump and put in a new combination of painkillers, and bumped up the dosages a bit.  Hopefully this will bring down the excruciating pain in my side (which they think is probably cancer growing and gnawing on random nerves. ow.)  Unfortunately they said this new combo takes about a day to filter into my system, so I won’t know if it even works until tomorrow.  Thanks to Marci for watching our kids, and my Mom for having a fresh potato soup ready for us when we got home, took a lot of stress out of this long day.  We’ve also gotten lots of little goodies and treats from neighbors and people from our church, thank you!

Failed

Didn’t manage to get in to the Clinical Trial because one of my liver levels was too high (Alkaline Phosphatase).  They pumped me full of saline and a bone strengthener last week to try and bring the AlkPhos down, and it did, but it still wasn’t enough, so now I get to go in again and get more liquids and hope that it lowers the AlkPhos enough for me to get in.  Say an extra prayer for me to be able to lower my liver levels so I can get in this trial!

My pain pump doctor switched out one of the drugs in my pump, to a stronger painkiller at a much smaller dose with the aim that i’ll need fewer refills, then he went out of town. Unfortunately he didn’t get the levels matched up very well and i’ve been in a lot of pain again.  I activate the extra dose on my pain pump and it helps for about 10 minutes or so then fades, and then i’m left with gulping down a bunch of regular pain pills which slowly brings the pain down but still leaves a hefty part of the pain for me to deal with.  The pain doc is in Ireland for the holidays, and there’s no easy way to get a hold of him, so now I have to convince one of his interns to boost the pump or switch the drug back or… something.  I read somewhere that Liver and Pancreatic(?) cancers are the most painful of cancers because they do bad things to nerve pathways and stuff, I believe it.

Starting Clinical Trial Today

Well, not actually starting it, but getting a bunch of blood and other tests to find out if I qualify to participate in it or not.   Going to get my pain pump adjusted today too, they switched the drug in there last time to a stronger drug so that it would last longer before a refill is needed, but unfortunately it doesn’t seem to be working as well so I need them to bump it up cause i’m in constant pain again.

Thursday morning I get to do another round of Radiation treatments.  Actually kind of looking forward to it since it relieves some of the pain and is a pretty benign procedure despite what you’d think.  That evening my work has rented out a theater for us to all watch the Hobbit, so that’s another thing to look forward to that day, woohoo!  I’m not sure if it’s the 24FPS or 48FPS version of the film (Hopefully I get to see both versions during the holidays and can compare.)  Either way it should be fun!

Hope everyone is staying safe and enjoying the holidays!

Been Slacking…

Sorry, it’s been a while since i’ve posted, been fairly busy with the holidays and such.  I finished off the CT scan and MRI’s and had my first radiation therapy.  They zapped a little area on my right side.  The small spot they zapped feels a bit better now.  They’re trying to figure out from the MRI’s whether or not they can safely zap more centrally without damaging my pain pump.  I have an appointment tomorrow to find out more on that.

I’ve called off Chemo for now, it was really bringing back the neuropathy which I was hoping to avoid.  Plus i’ve started the process of getting in to the clinical trial and you need to be several weeks clear of chemo in order to start it.  The bad news is this clnical trial uses a mix of a new “Bio Drug” and an old chemo drug, and the chemo drug has a possible neuropathy side effect, which i’m not sure I could stand.  Walking is already difficult and if I lose much more control of my legs i’m going to end up in a wheelchair.

I hope everyone is having a great Christmas / Hanukkah / Holiday season.  Stay safe out there and remember to give your kids an extra hug or two.