no answers....more challenges

Diposting oleh good reading on Sabtu, 08 September 2012

Here's what's been happening lately.  It's been kinda rough, and not much good to report:  Eileen sleeps most of the time, and isn't usually completely 'with it' when she's awake, but....I can still recognize Eileen in amidst the drug and tumor haze.  It's so wonderful to spend even a few waking moments with her here and there.  Even with all the crap acting against her, at times she's still got some of her humor and wit.  She always puckers when I come in for a little kiss.  

It can be challenging to get all the meds onboard.  Many of them are already liquid, but we've taken to crushing whatever pills can be crushed and tarting them up with ice cream.  I know my ice cream to med ratios can be off sometimes and she's a trooper....although her face does tell me to use better judgement next time.  She hasn't had much of an appetite but she had a full serving of yogurt this morning.  (little victories!).  The bowels are active, but....there really isn't much going in, so not much coming out either.  Her sorbitol dose is pretty high (60ml 2x/day) so she's getting some nutrition there at least....although it's pretty much the most horrible tasting stuff you'd ever imagine, even for someone with a sweet tooth.

She's had a few episodes in the last couple days that were terrifying for her, for me, and her mom.  Lots of fast onset pain and anxiety.  In talking with the doctor, it could be that the timing between her methadone doses is too long so we're going to try some adjustments.  I sure hope that helps.  In better news; the nausea has been under control *knock on wood*.  I don't know if the morphine was the cause as suspected (now using oxycodone instead), or the newer nausea meds are the help, but either way I'll take it.  If we can get a handle on what's causing the episodes, we'll be doing much better.  Of course, we're always reminded that the tumor involvement can be the cause of some of this too.  Just hoping some med adjustments can help her keep her more comfortable.

With the current state of affairs, a trip to the city for another palliative med dose seems out of the question.  Eileen really hasn't been out of bed in over a week.  Her doctor is in contact with the other doctor to see if maybe the dose could happen here at home.  Eileen lit up when I mentioned the possibility....I know she isn't paticularly looking forward to the trip over the bridge.  With all that being said, you never know if the methadone change might improve her energy level...she might perk up a bit.  All this stuff is very much day to day, moment to moment.  That's something we've been learning, that's for sure.  Still hanging on to whatever hope I can find to hang onto.  If it happens that we are a go for the city trip, I've got a city car share van lined up.  I did a bit of a dry run with that van earlier this week and it seems like it'll work if need be.

I'm working on being less of a control freak and Eileen's mom has been very patient with me, thankfully.  We're a pretty good team at this point, and having some alternating tag-team downtime has been extremely helpful, though I can't say that I'm ever really "off"....more like I just change the view and try to give my mind a couple different things to think about here and there.   I've gotten out for a few short bike rides up the hill and today Red and I even did a little run.  We took a break at a vista and Red did his best "logger dog" impression.  He's such a city boy....didn't know what to do with himself.


That's about all I got right now.  I sure wish we had something more positive to report...although I'm always tempering my assessment of the situation with the idea that maybe...just maybe, the palliative treatment is actually doing something and she'll start to feel a little better at some point.  Who knows.  We'll just keep on keeping on and hope that we can do a better job with the meds.  As always, we all really appreciate your good thoughts and prayers.....more than you might imagine.  It's seriously keeping me going knowing how many people are pulling for us.



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