Old traditions are great!  I wish we still had some of ours.  The  old 
timey family parties and etc.  Put a note in for me and all our  CML'ERS.  We 
need all the help we can get.  Have a wonderful trip and  we will pray for you 
and your trip also.
Jeanie<3 
 
 
In a message dated 4/21/2013 1:03:49 A.M. Eastern Daylight Time,  
[email protected] writes:

Hi Beth and Fellow Warriors:


I pray for all of us to do well and live long, happy, pain free lives.  
What Millie wrote is so true. People who don't have CML or those who aren't  
related or very close to a CML patient don't get it. My sister is in from  
Florida because our 92 year old father had a stroke 3 weeks ago. Tonight we  
had dinner with cousins who kept saying to me, I guess you aren't really sick  
because you look great. Really?  I'm wearing a wig, just started with  
false eyelashes, had a week with such bad Gleevec stomach that I can barely  
sit 
because my bottom is so sore, muscle cramps and terrible bone pain. But  
life goes on and I'm determined to live my life, not focus on my death. That  
will happen whenever the Heavenly Father determines that it is my  time. 


The point I guess I'm making is that there is so much isolation and fear  
because we have something rare and it is scary to us and others to hear the  
word cancer.  The silver lining is that we have an illness that can be  
managed, albeit with horrific side effects for many, for quite a long time.  
Plus new treatment options.  And we have one another which is a true  blessing. 


Beth, I send good wishes your way and will say prayers for you. My  
heartfelt thanks to all of you for the kindness you always extend. 


One last thing. I'm going to Israel the end of May. There is a tradition  
in my religion, Judaism, that if you write a note or prayer on a small piece  
of paper and fold it up and place it in a crack in the Western Wall in  
Jerusalem that God will answer your prayers. I've had miraculous experiences,  
including that more than 28 years ago we were told it was IMPOSSIBLE for me 
to  get pregnant. I gave a prayer to a friend who was going to Israel that 
asked  God to bless us with a baby and within 6 weeks got pregnant. We only 
have one  very beautiful 25 year old daughter. If anyone would like me to 
place notes  for them, please let me know and I'll give you my private email. I 
figure a  prayer to God is always a good thing and I am happy to do this 
for anyone that  would feel
some comfort and hope in this old tradition.


Marcie

Sent from my iPad

On Apr 20, 2013, at 4:04 AM, "C.M. Houtz" <[email protected]_ 
(mailto:[email protected]) >  wrote:



   
Hi  Beth,
 
I  know  you struggle with your meds and that you have had so many side  
effects.  I'm so sorry that this new drug has caused you such  problems.  I am 
not sleeping well tonight, so decided to get up and do  some things on here 
that I've been meaning to do.  I wanted to print  out some patterns to hand 
stitch.  I haven't been feeling well, and am  seeing an Gastrointerologist 
(spelling is wrong), but at 4:00 A.M., what do  you expect :>).  When I came 
off of two months of Home Care....due  to a hip problem, I thought I'd be 
feeling better, but started with  nausea.  It's not every day, but enough 
that I am having trouble  dealing with it.  I also was in severe pain due to my 
 polymyalgia.  After years on Tasigna and dealing with constipation, I'm  
dealing with the opposite most days.  I had a sinus infection and my  doctor 
put me on an antibiotic and that got rid of it, but the stomach  problems 
have stayed with me.  I also was taking meds for acid reflux  and now, after a 
year on the stuff, Express Script has told me that it can  interfere with 
the Tasigna, so had to stop that.  My pain and  whatever has made me so weak 
that it's almost impossible for me to get up  from a chair without help.  
I'm not sure if the Arthritis has caused  this, or if it's a medication 
problem, but I can understand where you are  coming from.  I'm anxious to see 
my 
Oncologist next month and,  hopefully, I'll still be in remission.  We all 
have issues, but must  stay strong and fight it as hard as we can.  I know 
that it sounds  easy, and know that it isn't, but just remember that we're all 
here to help  one another, and you all have helped  me so much.  People look 
at  you and think...you look well, and don't realize how difficult this CML 
is  to fight.  I look in the mirror and wonder who this old lady is as my  
hair if all but gone and I no longer have eye lashes, but I try to laugh and 
 just put my wig on and go out whenever I can do it.  Lately, that  hasn't 
been to often.  The weather is getting better so one of these  days, I'm 
going to go out with my jazzy chair and enjoy the warmer  days.  I fill in the 
rest of my time with needle work.  I'm doing  a lot of embroidery right now, 
and quilting.  I have two quilt tops to  finish up and then will have 
someone get them ready for me to quilt.  I  try to fill my head with things 
that 
I love to do, and that seems to  help.  I wish there was more that I could 
say and do to help you.   I will keep you in my thoughts and prayers and hope 
that you will be in  remission soon.  Take care.......Hugs,  Millie
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