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.

Friday, June 26, 2009

Update 6/25

I have spoke with MD Anderson twice today. I certainly would like to think they are more organized than they appear. They found out that Cayti is not a compatible stem cell donor. Carol's is still pending, Please pray for us that Carol can donate. It will be about 1/2 the cost at 100-200,000 to the stem cell transplant, plus I can have it in Tulsa. Silent auction up this weekend. Two great items. Zios & bows
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Wednesday, June 17, 2009

Update 6/16/09

I was diagnosed with myelodysplastic syndrome/jak 2/idiopathic fibrosis this week.  This is primarily the same as the original but with a little spin.  This has a 40% CURE rate with Stem Cell Transplant which is why I have opted to have this done is 30 to 60 days.  Please pray for me and the family.  There is approximately a 20% morbidity rate however there is 100% chance that I will die before sixty without it.  What a choice huh?
However, I have a real peace about this and know I will be in God's hands.  The other piece of good news from this is that it can be done in Tulsa (we think as this changes every other week)  I will be in the hospital about 2 months and have about an 18 month recooperation time. 
 
We  have also decided to postpone the Appleby's fundraiser until later.  I have been extremely stressed and a little under the weather.
 
We will still do fund raisers and hope to raise money as Tony has to stay at the hospital for about 2 weeks once this procedure is done.  The cost will be about $250,000.  I know I about had a heart attack when they told this to us.  I have appreciated the continue support both spiritually, with the donations, calls and cards.  This has meant a great deal to us.
 
We are looking for a house to rent or rent to own type thing in Tulsa as I will have to live there for at least 18 months.  Our house in Siloam has still not sold but Cristy will be renting it at least for a year.
 
We have continued to have some car repair issues that are about 2500 dollars so the whole thing together is about making us crazy so if you call and we don't sound quite right just know we are not quite ourselves right now.
 
We need a lot of prayer for tthe girls and their families. Dr lynch my oncologists and Tony and me..........
 
We are having a silent auction with many things that have been donated.  You will need to look on peglewisrn.blogspot.com forupdates and these items.
 
I am missing work and the people I work with tremendously.  Wish I were able to go back but hopefully later.  I have not heard from disability yet but should be hearing in the next few weeks.  I have used all my short term leave and hopefully in about 2 weeks will be able to pick up with long term disability.  These few weeks off without pay have stretched us a bit but are "ok". 
 
Please continue to call me and let me hear from everyone.
 
Love, Peg
ps  we have started selling the Sonic gift cards for $5.00 that are valued at $25.  We can mail them to you and you can mail the money or use pay pal.  Thanks again for all your help.
 
 find updates on facebook-peg lewis
partnerwithpeg.blogspot,com
 
 
 
 
 
Each day is a day that God has given us, and each moment of that day is in HIS hands.
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Friday, June 5, 2009

Fundraiser

Raffle Tickets and pre-purchase tickets for the Applebee's pancake breakfast are now available.  Visit Peg's Partner page to purchase your tickets today!!!!!
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Thursday, June 4, 2009

6/4 update

I have two things to update to my friends. First Sat. June 27th is an "all you can eat" pancake breakfast at Appleby's on 71st in Tulsa. It is from 7am to 10pm For 6 bucks you get all the pancakes you can eat and drink. I have been in the hospital with what they thought was a light stroke or known as a TIA. However, now they are not sure. (Story of my life). My lips and hand went totally numb twice
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