Hi Millie:

Tomatoes are a no no for me.  But those steamed Maryland crabs, well, I just 
love them.  They are worth the Gleevec stomach!

Please let us know how your appointment goes tomorrow.  All of us are praying 
for good news and hoping that the liver biopsy results do not indicate a 
serious problem.

You are an inspiration to us.  So loving and caring about each and every one of 
us.  Take good care and I'll be watching for your update.

Much love,

Marcie


-----Original Message-----
From: C.M. Houtz <ho...@ptd.net>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Sat, Jul 13, 2013 12:41 pm
Subject: Re: [CMLHope]



Hi Marcie,
 
I am trying to get myself going today.  I woke up with terrible back pain. It's 
always in the same area and my Onc. says that it's my gall on the left side and 
my liver on the right.  I couldn't get out of bed, so I took my pain meds and 
put some heat on it and was able to get up after an hour or so.  I'm still in 
some pain, but not to bad.
 
I was on Gleevec for years and it simply stopped working for me.  I was on 800 
mg. at one point.  I did have a prescription which helped to control the 
diarrhea and for the life of me, can't remember the name.  I still had to watch 
everything that I ate.  I found that anything with tomatoes in it was a no-no 
and other things triggered it too.  On Tasigna, the worst I've had is 
constipation, and, of course, the liver problem.  My Onc. still thinks it's the 
gall causing the problem, and neither of us will know until the biopsy comes 
in.  I'm sure he'll do a lot of blood work on Monday to see if I'm still in 
remission, so I pray that I am.  As far as memory is concerned.  I don't feel 
I've lost any.  I always did have good recall, so I feel fortunate in that dept.
I am a loss for a word every now and then, but think that's normal for 74.  It 
does frustrate me, but I find that if I just put it aside, it will come to me 
sooner or later.  Usually, it's such a simple word or name.  I do have good 
long and short term memory though, and that's a good thing.  I also feel that 
the drugs affect my bones and muscles.  I had arthritis before all of this, but 
the progression has been fast and now have polymialgia, which is a form of 
Arthritis.  They do a sed rate check when I get blood work, and have me on 
prednisone for that.  That can fluctuate from one blood check to another.  
Right now it's bad and I can't lift my left arm very well.  It mainly affects 
me in my neck and arms...shoulders, etc.  It's quite painful, so I just deal 
with it the best way I can.
 
You are right that people don't understand.  There are times I could scream at 
them, but it wouldn't do any good.  I get told that I look good and must be 
feeling fine, but they haven't a clue.  It is a life time thing for us, and so 
we do the very best that we can.
 
It is so nice putting a face on you and the others.  I am going to print out 
the photo's and make a small album of all of my CML friends.  
 
You take care, and we'll talk again soon.  I find that in the past few days 
we've been able to open up more to one another and that's a great thing for 
everyone.
 
Love, prayers, and many hugs,
Millie

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