just lots of questions

Apologies again for the lack of updates.  I'll try to give a bit of a catch up here.  I would love it if Eileen gave you an update herself but it's been challenging to find the time and energy.  We've collectively started a couple posts but then we don't get them finished up.  Days fly by.

I seem to have nothing but questions lately:  Is it the meds?  Is it the tumors sapping her strength?  Is it her immune system warring against invading bodies?  Is the palliative treatment from earlier this month doing any good?  Does the breakthrough pain sap her to the point where she just needs rest?  All of the above?  I've been spending probably too much time contemplating all this and more.  I'd pay anything for the answers.....but then again, maybe I don't really want to know.  It doesn't really matter when it all comes down to it- we just need to continue to work toward making Eileen as comfortable and happy as possible.

We've continued to have some rugged days with pain management and nausea (with a little vomiting).  Also, the GI issues continue to be hard to manage.  (meds too far...meds not far enough...etc).  We keep thinking we're just about to get things controlled, but then we have bad days again.  Curses.

We've scheduled another dose of the palliative treatment in SF about 2 weeks from now.  Our hospice doctor feels it's a no-brainer to go for another dose- the thought being that it doesn't seem to cause side effects that we can't manage and it's possible that it's doing some good.  On that note; the fact that Eileen has the previous dose on board right now makes me question the recent difficulties with pain and sleepiness and (real or perceived) progression of her symptoms.  One of the parting comments from the SF doc was that things might get a little worse before they might get a little better.  There's a lot going on in her central nervous system, so if the tumors get a little angry (they call it tumor flare) it could be seen as a positive.  Who knows, maybe the stuff is actually doing something good and her immune system is working overtime to go after the shit-ass cancer that's all up in there.  Again with the unanswerable questions.  We just keep hoping.  It's good to have hope.  Though I never thought of myself as much of an optimist, I sure have been wearing that hat lately.

In nicer news, E's sister Meg came out for a few days while her mom headed back to CT to touch home base.  It was great to have Meg here and it was good for her mom to spend some time with her grandchildren back home in CT.  I sure wish everyone lived closer.

For the time being, we're on a schedule with the hospice folks wherein we get a daily nurse visit.  We're all trying to get the meds dialed in around the pain and nausea and it's been helpful to have the nurses here more often.  They're in close contact with E's new hospice doctor and that's been going really well.  We're super glad that we signed up with her....she is GREAT.  We had an in-home appointment with the doctor and our main hospice nurse earlier this week.  We feel that even though the med road is still pretty rough, we will eventually get to a point of stability and comfort.  Here's to hoping!

I'll wrap this up by again giving a huge THANK YOU for all the well wishes and good thoughts and prayers etc.  We're really bad at getting back to people, but please know that we appreciate it!