It Is Only Tuesday....ARG!

It's only Tuesday, first of all, I need some new batteries in my keyboard; I need to fix the screen on my IPhone, because that thing is an important part of my life-school, jobs, school, after school programs, blah blah blah...the list goes on.  I digress...

Liz is home from school today, which sets me back on my goals a bit; it is hard to focus on the needs of a 7 year old, and be a mom with cancer.  Somehow that sentence is going to become a jumping point for a series of blogs, soon as I get organized, again.

For this week, I have a new goal.  I am enrolled in a pilot app study for meditation, while using a Fitbit-all for the Doctors at Arizona State University, under the direction of Dr. Reuben Mesa and the Mayo Clinic.  So excited.  I worn the thing for week one, to assess my baseline activity and sleep patterns.  I desperately need help in the sleep category; my sleeping has decreased due to pain and illness.  I am hoping to learn a few things about myself, and my daily life-yet also excited to have a purpose.  This study will help MPN sufferers in the future, AMEN.

We, like everyone in my house has this disease-are embarking on a new direction in our journey with cancer.  So far, palliative medications haven't help for symptomatic burden.  I am currently doing a two week trial of steroids, while patiently waiting for all the results to come in from labs and biopsy.  While some think I am crazy, duly noted...I have prayed for worst case scenario, because that is the only opportunity that I have for a shot at LIFE.  I have to be worst before they will even consider fixing me.  And no, stem cell transplant is not without complications, even earlier death-I DON'T CARE.  I am a strong persistent woman, who will not give this life up without a fight.  I have so much love to give, surely God is just showing me how strong I really am before stepping out in the criminal justice arena. LOL. 

I WANT:
to live
to work
to see my children grow
to love
to save innocents
to help spread justice
to see the world experience true peace

Ok for now.  I am going to work on my first CALM application.  I will then come back and freshen up the blog, ready to attract new readers.  Then I will share links and more information about the CALM application!  Couldn't we all use a little CALM in our lives?  I think so!

believe and you will receive

MPN 2017 ATL Conference

So excited to attend the 2017 MPN conference in October!  Meet new folks and hear the latest news on MPN's!

http://mpnadvocacy.com/wp-content/uploads/2013/01/Atlanta-Flyer-2.pdf