Myeloproliferative has three phases of this disease group.  The first two phases are non-cancerous and many people live a normal life with minor adjustments.  The third phase however, is a very serious form of cancer that is not treatable and considered terminal.  This is the form I have.  It is called Myeloproliferative dysplasia, JAK 2, idiopathic fibrosis.
This cancer changes your bone marrow into a fibrotic material much like cement.   It also causes more work on your spleen and liver which have to monitored very closely.
 
The main problem right now is to find out how much fibrosis has taken over the bone marrow.  If you are in the beginning phase of this cancer you may possibly be able to have a stem cell transplant.  However, if the disease has progressed too far there is no further treatment.
 
This disease affects your appetite, taste, liver, spleen, causes increased weakness and tiredness consistently, and creates severe anemia, requiring frequent blood transfusions.  There is also increased joint pain. 
 
Becauses of the Factor V blood disorder that was diagnosed eleven years ago, I have needed an oral chemo to help keep platlets (causes you to clot and can create blood clots if not monitored) at an acceptable level.  I have also been on coumadin and aspirin to decrease chances of clots.
 
Now that I have been diagnosed with Myeloproliferative dysplasia, I have had a hard time adjusting the oral chemo due to the low blood counts.  The Doctor is having to take me off and on the oral medication trying to walk a fine line between keeping my platelets down and keeping my blood counts up.
 
The life expectance of this disease is 2-5 years.  However, we know all things can change and there is always a positive side and people who respond in a positive way.

Tuesday, April 28, 2009

Ways you can help with our upcoming trip...

I think I can talk in complete sentences today so I will try this again.  The above website will have a list of items (under$5.00) that are needed to go to Houston.  If you know anyone who likes to make goodie bags etc.  please pass this on.  We have really appreciated all the support and help needed to get this together.  I would love to hear from from you all.  I am trying not to be so nervous about this.  My daughter Ceara just called me and sited a verse about not worrying about tomorrow and suggesting I might just go day by day.  Go figure, huh?  (I knew there was a reason we had them memorizing scripture verses when they were little----)
 
We are in need of some 'diabetic' snack bags for Tony to take on this trip.  Sugarfree cookies, gum, diet dr. pepper caffiene free, oranges, any fruit, or anything like that.  Also any crossword magazines or home type magazines.
 
A $5.00 sonic or mcdonald's gift card or anything like that.
 
We will potentiall be there leaving next Monday and may have to stay through the following Monday.  There is a big confderence in Houston which has added to some of our stress, getting things to work out....
 
On Mondaythe 18th we are having an El Chico fund raising night (71st street and Mingo).  They will be donating 10% of all the procedes to the Peg Lewis Medical Fund.
 
Also, the girls hope to have the auction up and going by the 15th.  The above website will keep you updated.
 
Our insurance with the City of Tulsa will be changing in June which will disqualify us for some of the reimbursement we would have rec'd from Community Care for the evaluation.  Please put this on your prayer list.
 
I have lost another 8 pounds and would also like prayer regarding stabalizing my weight and keeping my protein levels up.  My lab values were ok yesterday so I will not need a transfusion this week.  Please encourage friends if they donate blood to do so at Oklahoma Blood Institute for me, pretty please....
 
Last but not least.  If I do get to have a stem cell transplant, I would really like to see my sister before I go in to the hospital.  I have no idea how this would work out but please start praying for this.  Please have your church pray for us this Sunday for safety for the trip, good test results and calmness of my spirit......
 
I love you all dearly and hope I am not sending too many emails.  I need all the prayer help I can get right now.
 
Love, peg
 
also, we are looking for a cheap used laptop.  If you know of anyone who has one for sale please let us know.
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