Monday, November 18, 2013


Just a general update to keep everyone informed.  The last couple weeks has been harder for me.  i have struggled more with a few things.  I think the steroid gave me a horrible case of the hiccups.  I was originally on 4 mg twice a day but cutting the rate slowly to 2 mg seems to have helped somewhat.  I was also taking a medicine and tried to eliminate that a few days ago and they seem to be worse.  So I think the answer is going to be the medicine plus 2 mg dose of the steroid.  Sometimes changing positions helps, eating and talking are worse.  It could be 10-20 times per minute.  It's not painful but very annoying.  My stomach tube has been leaking worse and I think the hiccups are not helping it.

The biggest change I notice is in my thinking.  I feel like my brain is really slowing down quite a bit.  It makes me much more quiet.  I used to be more of a talker, I was always thinking and speaking.  It's been harder to go to church or work when I don't have as much to say.  And around home is the worst.  Leann is used to me talking for a couple hours each night and now I feel like I have nothing to say.

My talking is hard as well.  I think it's due to the facial nerve not working as well.  It's affected my tongue as well and I can't speak as clearly as I used to.  The volume is less which I think people would get used to but it's hard to slow down enough that people can make out what I am saying.

Then there is the sight.  Because my right eye doesn't close as well, the cornea is more irritated and dry.  This causes blurry vision unless I hold my right eye shut.  I've been sleeping with a bubble over my eye to keep it moist at night.  Im thankful I'm not actually losing my vision though. I've got appt later this week with a doctor, they might do some temporary weights to help my eyelid close.  The last couple days have been a little bit better, if anything this is improving.

The hope is that the chemo can work on the tumor particularly around the facial nerve and I can get some function back over time.  It's hard to know though what is causing what.  Is the chemo itself causing the brain symptoms?  If so, is it worth it?  The next scans the 3rd and 4th of Dec at Mayos will tell us if the chemo is stopping tumor growth or not.

I guess that is the medical summary.  From a spiritual standpoint, it's been harder as well.  I don't feel like my life is nearing it's end.  The symptoms have been harder to bear and some days are harder to endure through.  There are times when I feel like I just want to go home.  Leann is caught in a weird spot where she doesn't want to see me suffer but doesn't want to be without me either.  So sometimes we can find ourselves thinking if I just slipped away some night in my sleep, that would be good.  I have found that things of earth seem to fade away in importance.  I opened one morning to John 14 and that gave me lots of hope.  It speaks of Jesus going to prepare mansions for us.  It's hard to think of earth when you have this on your mind.

What to pray for?  A couple things that are most important.  The first is that I can find a purpose and usefulness to those around me as I see my function decrease.  The second is that I can be more talkative and my brain can have thoughts to share.  Thanks for all those who have sent cards or come to visit.   Sometimes I just lay down but have enjoyed the singing and visits of those who have come.

Derek & Leann