Going Down!

Going Down?!

Ok, if you aren’t confused yet you may be after reading this. First, guess what I finally received last week in my email. I got a response from Dr Gingrich finally about my test results. Here are his exact words he sent me: “Your mutation testing came back negative – no T315i or other detectable mutation. The PCR test result was 0.00156 [this number is not to be compared numerically with your prior numbers] which roughly speaking equals 156 copies of the Philadelphia chromosome per 100,000 copies of a normal ‘reporter’ gene. In other words Gleevec has produced >100-fold drop in the Philadelphia which is not bad but is also not zero, which is our goal. There are other mutations that can’t currently be measured that could cause the Gleevec to produce an incomplete response.

I would suggest our plan be to continue with Gleevec, recheck the PCR in 2 months from your last visit and if still elevated, consider moving over to the Tasigna clinical trial.

Ok, so if you don’t understand that, which at first I didn’t catch either, my numbers in my PCR are actually back down. (This is a good thing, I know very confusing, up and down which is good right?) This means it seems that my Gleevec is back to working. So why was it up before? Don’t know right know. Like Gingrich said, there are other mutations that can’t currently be measured that could cause the Gleevec to produce an incomplete response.

Now last Friday I went and saw Dr Sangha and he basically said that he wasn’t sure if I would be able to be on the test drug if it seemed my Gleevec was working. So where does that leave me? Stuck in an elevator listening to music. Basically waiting till I see Dr Gingrich on December 14^th and then probably waiting after that too until I receive my test results that we will take when I am there.

Is staying on the Gleevec a good thing or would it be better to go to the trial drug Tasigna? Well, If I were to go on the trial drug most everything would be paid for beings it is a “trial”. They would pay for my visits, my test, and my drug. Now if the Gleevec is working that is great and yes it would probably be good if I just stayed on that but that means having a big deductible to meet the first of January. So as usual it is all up to God and what he wants. I know that and always have. I just don’t always like waiting and wondering.

I am finding that I am getting a little more emotional as the holidays come. I keep thinking back to that dreaded phone call almost a year ago and how things could have been different for me right now. I have a lot to be thankful for this Thanksgiving. I can’t say that I have changed my ways like I probably should but I am definitely more thankful for what I do have, especially family. Remember that when you are with family this Thanksgiving, you never know what tomorrow holds. Be sure to let those around you know how much you love and appreciate them.

The Shack - Believing God works all thing for Good

As a Church our Lenten Study this year is delving into the hotly debated book, The Shack. There is no doubt that it has a load of theology that is intertwined in a fictional book. And as with any human attempt at expressing the qualities of God, we must remember that we cannot get it fully right until we actually experience it and see God face to face. (I do however believe that this book offers a hopeful and well presented redemptive theology for people who have previously been wounded by the church and felt like God had abandoned them. *Actually I like the book a lot)
But I guess that is not why I am sharing about it in this blog. As I am digging through it and writing the questions that we will be addressing, one thought came out that I fully agree with, and believe is a breaking point for many people. At one point in the book Mack is interacting with the Holy Spirit (Sarayu) and they are dialoguing about his understanding of good and bad. Mack actually realizes that he needs to release his human judgment of what is good and bad because in his finite nature he could not know how God would eventually turn things. Sarayu continues one of his thoughts, "in one instant the good may be the presence of cancer or the loss of income - or even a life."
In truth we all hear people regularly sharing their hurts and pains. In fact many of us may on occasion bemoaning our own desperate situations. But in reality how do we know, or why do we believe that in the worst of moments God will abandon us. Or even worse why would we be so arrogant as to judge God as the one who caused that pain in our life.
I love this point in the book, and the theology that it offers. It basically reminds us of the fundamentals of scripture. God loved us so much that he took all of our pain, hurt, brokeness, and sinfulness to the cross for us. It is God's nature to redeem us out of pain, not to bury us in it.
So I hope you are all hearing these words as encouragment. Take heart whatever situations you face. God is hope, love, and peace for us when the waves of life turn against us. If you find yourself in one of those times, whatever you do don't bury your head in the sand believing that wave will overcome you. Instead look up with hope for God promises to turn all those terrible waves into the towel and basin with which Jesus will wash your feet.
In writing this I am stating without a doubt that God has already blessed us, strengthened us, healed us, and given our family hope through the presence of Leukemia in Jody's life. We know that not all the days will be easy, and that the future is unsure, but we do know that God promises to walk with us, and use the very source of our pain to bring about the best good for our lives. This is what it means for us to live victoriously. It is not that we are proclaiming our victory over the disease, but we are claiming victory through Christ in the way we respond to its presence in our family.
If any of you are struggling with issues of pain and believe you are alone. Remember God is with you, and let us know so we can be praying for you. With Christ we can all live in victory. Amen.

Our Christmas Picture

Taking our Christmas photo this year was special and unknowingly so. Jody took the time to match all our outfits and put a bow on the tree. Most people might think that is not such a big deal, but you should know why we are posed in such a setting. Jody also took the time to hand make (stamping up) over 100 cards. These cards had a similar picture of a tree with a red bow on top. Inside was the following poem. (author unknown)

I had a dream one wintry night

As the moon was full and bright

The snow fell softly on a tree

That stood alone, just like me

Then I saw Jesus walking by

His caring look caught my eye

He put a bow upon that tree

A symbol of His love for me

I woke up thinking of what I’d dreamed

Amazed at just how real it seemed

Then through my window I saw the bow

With ribbons glowing down the tree

Just like the blood He shed for me

I was in awe of the beautiful bow

Then I saw

His footprints in the snow.

We pray you see Jesus in all you do

this Christmas Season

As you will see in the next post: it was Christmas Eve when Jody was diagnosed with CML.