- Re: Thanks Gang!

[Guest guest]

You know, it's absolutely amazing how different each individual case

is, isn't it? I recognize how lucky we've been, from reading others

posts over the last 16 months. The last two weeks are really the

only bad time we've had. Last evening and this morning were the

worst .............. but for some reason Rick has been MUCH improved

all afternoon and evening. We only have two more days of Decadron

and then I think things will be a little better for him. I know

Decadron works miracles in many cases, but for Rick it has been a

two-edged sword. His blood sugar is up, his wbc is up, and his

platelets are the lowest they've been (85), and the oral thrush that

set in have all been a result of the Decadron. So, we are anxious

to get this stuff out of his system. He is not confused anymore,

seems to be thinking and speaking almost completely normal .......

just extremely wore out from the whole " Decadron roller coaster " and

the radiation (which we finished yesterday!! )

I kind of enjoy rubbing his fuzzy head too!! ;-) Not sure I need

him " howling " right now though ............. he has me hopping

pretty good already!!

Wow, that's a very high CEA ........... just goes to show you that

CEA levels don't always indicate amount of tumor burden .....and is

different for each person. Heck, Rick's had just gone down by 80

points ONE WEEK before discovering the brain tumor!! It once again

proves .......... THE ONLY RULE IS THERE AIN'T NO RULES!!! Oh well,

we learn to appreciate the good days and how to be patient and take

the bad ones one hour at a time. Rick noticed that I have

seemed " frustrated " this evening ........... DUH!!! It's been a

hell of a week and the rest of " life " keeps going and has to be

tended to also .......... can't imagine why one would get frustrated

or tired!! ;-) I didn't even dignify that comment with a

response ........ just agreed with him mentally, sought out one of

my best friends (a Xanax) ;-)... and set out to try to get

that " frustration " under control. You know, as a caregiver, we

realize the toughest part of the battle is on the shoulders of the

patient .......... but that does not take away any of the pain and

frustration we feel. Just motivates us to try to keep it in

perspective and recognize when we need to " get away " or work on

changing our perspective ...(hence the Xanax)!! ) We all do the

best we can do ....... and then don't sweat the rest.

I hope the Avastin does miracles for your husband ..... and everyone

else too ......... we could all use a break. About the Ibuprofen

Rick is taking ....... it was actually the Oncologist who prescribed

800 mg tablets of Ibuprofen for Rick quite a while ago. Seems to

work pretty darned good and keeping tumor fevers in check and

arthritis pain controlled.

Best wishes to you and yours!

Donna S.

> > Just wanted to thank you all for your encouraging posts. Don't

you

> > worry .......... we " ain't done yet " !! ) Rick started out

today

> > feeling about the worst he's felt ........he was almost in

tears.

> > After racking my brain for what else I could give him or do for

him

> > (he's on Decadron, Thorazine (just a little), etc,etc) ..... I

> > finally decided to get him to take one of his 800 mg

> > Ibuprofens ........and guess what?!! Yep, he's feeling pretty

> > darned good right now!! Go figure!! You'd think with all those

> > other drugs something as simple as Ibuprofen wouldn't phase

him.

> > Bet I keep shoving them down him now!! Whatever works! )

> >

> > His hair is finally coming out in little handfuls, so he said I

get

> > to help him shave it off tomorrow. At least guys can pull off

that

> > look easier. ) He's got some pretty cool " do-rags " from our 4-

> > wheeler adventures, we'll just have to be " styling " on those

cold

> > days. Attitude is everything you know! Hope you're all having

a

> > decent day ........... my thoughts and prayers are with you all

as

> > well. Thanks for keeping us in yours.

> >

> > Donna