sweet, seth, love it! that's great news. nasal endos are a treat huh? like heraldo riviera going into al capone's vault.

meat tenderizer is basically salt with bromelain which is used for inflammation, although he prefers using salt.

i think it's neurontin that's tripping him out the most plus the dreaded chemo brain. we had a long talk with his dr and fav nurse today, as he feels out of it and needed to hear from someone else other than us why. would really like if they could script him something for anxiety but they aren't too keen on the idea as he is finally pain free and still very coherent with the exception of the times he hits the wall emotionally which isn't often enough--he finally let go today about how confused and scared he is. spilling a glass of water can flip him out easily, even though he gets why it happens. we agreed i'll call every few hours (AND he'll pick up the phone) when i'm not with til he gets over this period. that way he can snarl at me instead of my mom.

we watch the prostate patients in the waiting room, they breeze through treatment, my dad's sort of jealous (jealous of someone else's cancer, lol!) man this disease/treatment sucks!

Hi Caco,

Allow me to jump in with a warning! Years ago I got royally messed up on an "anxiety" scrip called Ativan, which you *will* hear discussed on here. Again, maybe I'm a freaky sensitive type, but if you look into it you'll find a whole camp of people who feel very strongly that the stuff is VERY inappropriately used. The thing is, IT REALLY WORKS, it was amazing, I was going through a rough time (by the way, very likely caused by some other meds I was on.....that were probably causing anxiety attacks) and I could pop the little white pill and in 30 minutes the anxiety would fly off of me like layers of an onion being stripped away by the wind, it really was amazing.

Unfortunately! For me and for many others, it is cumulative and highly addictive, meaning if you take it daily, you need more and more, and then to stop taking it you basically, in my opinion, have to suffer through all of the anxiety and agitation that it "saved" you from.....as if it just somehow stored it up in some corner, but once you stop taking it you still have to live through it all, but now combined with CRUSHING INSOMNIA!

Can you tell I had a really really really really bad time coming off the stuff? Before cancer, it was the worst experience of my life.

Perhaps not everyone will have this reaction. And perhaps if you NEVER took it on consecutive days. But I consider the stuff to be very dangerous.

So, be careful what you ask for. Maybe there's something else out there, but be careful.

I feel for your dad. I really do. Some people get through this with just the physical challenges, but I certainly went through some extreme emotional/mental challenges as well and wasn't myself for a time. Please don't hesitate if I can help in any way.

I'm way over in England now, but if you or your dad would like to talk, or maybe even Skype, that would be easy from my end.

ONWARD THROUGH THE FOG!

-Seth

thanks again seth. he is going to tough it out. i'm pretty sure his oxy alone is making him see flying monkies and i dont want to add to that. it is so hard to watch tho as you said. funny, i told him about your reactions just the other day, and that youre fine and living across the pond!

Ah yes, I remember the flying monkeys! Not as much fun as it sounds.

I'm glad you were able to share my experience (that I got through it and am doing quite well) with your dad. Hopefully that will be at least a small consolation for him.

I've just found out that a long-time family friend, a man in his 60s, has recently been diagnosed with almost exactly what I had and is heading into treatment. I'm starting to really consider that this is an epidemic?

to peg or not to peg interests me more and more. at my age/if this were me, that peg would have gone in, but my dad would not even consider it. he is now on his 3rd hospital stay, this time he does have pneumonia...confusing as he didn't have it, then he did, "sounds" like he did, may have had it and it cleared up...argh! so now he HAS IT and got discharged WITH IT and feels great. go figure.

but i digress, so many opinions re the peg from different drs during this journey. his CCC drs called me late friday to suggest he may require "alternative feeding methods" which my dad would not hear of. the skinny appears to be, whether you tube or not, you still can get pneumonia, and if you can swallow, then not having a tube is the better option. these are unscientific findings as they are our opinion, but he is still swallowing strong in his final week of treatment, we are trying to be as careful as possible keeping him from aspiration which is where the pneumonia problems come from. i've actually documented and graphed his blood counts and gagging episodes and there is indeed a pattern to his ER visits when his, 1) white count is down, 2)he's had issues with mucous and this tends to make him swallow "wrong", 3)gagging/breathing in large amounts of air and mucous, 4) temperature spikes are higher when his white count is lower. AGAIN, unscientific and your mileage may vary. finally met with a seasoned ER doctor who understood they were treating an in-treatment cancer vs. just a pneumonia patient, and that made the last ER episode and hospital stay much more efficient.

the last week of treatment we've been requesting/receiving more hydration sessions, as well as IV meds to dry mucous...only lasts a day or 2 but helps so much.

lastly, if you travel for treatment and use a local hospital for emergency situations, always bring your blood work reports, medication/dosing info and primary contacts. avoids much confusion, ours is now stored on my phone.

hope this is of value to someone reading this, as we're learning by doing!

Wow Caco, you're in the thick of things now! I was spared the mucus trouble (no idea why) and never lost the ability to swallow, exactly, but did have nausea and gagging trouble. As I think you know I managed to avoid the feeding tube, but I *did* lose 20 lbs quite dramatically (I charted it), and lived on Ensure. In my case, if I had lost too much weight, they would have insisted on the tube. Having pneumonia on top of everything, oh my.

seth, he's down 10 lbs. but the mask is still tight! 3 more days, and no fever tonight!! its like having a baby sleep through the night.

sounds like he's doing great regardless of the pneumonia!

we've cut the neurontin and oxy just a bit to help with the tremors and flying objects, detox on these starts in a few weeks, joy! the antibiotics for pneumonia are not gastro friendly and messy, rehydrating him is a full time job. but the pills! with post treatment time on his hands he's obsessed with the amount and frequency, so diversion tactics are key as i fight with a mirror-image child version of myself.

without all your posts/experiences we would be lost. most of the time i knew what to do or at the least, where to start. have rescheduled the timing of his pain meds so that they are taken well before his anitiobiotics to minimize upset. started using the yogurt culture supp and this has definately helped as he won't swallow regular yogurt. on day ata time

Hi Caco, we've been away for a few days to Cornwall (lovely, by the way). How are things now? I ask in part because my darkest days started right after my third and final chemo. Hoping the storm isn't raging!

-Seth