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.

Coming to an End

Coming To an End?

I think I am on my last stretch of this road. My last Dr appt May 22^nd went well. Again I had my blood drawn and was finally able to get the results of my last FISH and PCR test. Both test said the same thing. That I was about .6% or 6 Leukemic cells out of 1000 something like that. Craig does better at explaining all this. They want it to be at zero or at least under .2%. It is all good news. I would have never thought I would be at this point 6 months ago. Once my count is where the Dr wants them to be then I believe I will have to have another Bone Marrow done to check the counts in that and that will be the official point of full remission. At least this time I will know what is going on. Is that good or bad, I don’t know. My next appointment is June 26^th. I don’t have any blood work appointments before that like my PCR. I wonder if the Dr Sangha realizes that. Hmmmmm?

I have been struggling some with my anxiety. Nothing serious by any means, just been noticing it more at night. My thoughts have been trying to take over my body. Hate it when that happens. But I have also noticed in this past 6 months that I am not worrying about things as much as I use too. From the little things like making sure my legs are shaved and if I have make-up on when I go out in public. To being scared to do out of the ordinary things for me.

For instance, I know this is going to sound really stupid but the other day Craig, the kids and I went out hiking in the woods. Now normally I wouldn’t have too much trouble with that as long as there was a path but we didn’t by any means stay on the path. We were on grass up to Hanna’s head and mud and climbing under and over trees and cricks, you name it. Normally I would have been worrying about tics, and poison ivy (ok I was little) and other animals like scaring a deer and having it charge us (I warned you it was stupid!) and even should we be out here? I actually just enjoyed the time and had fun with this adventure. I just don’t seem to worry as much about what others are thinking about me which is WAY out of my comfort zone. God has used this experience to show me that I can be and do what I want without worrying if it is ok with everyone else. God does have a plan for me. I have always known that and I am even more convinced of that.

I have been wondering what will happen to this blog when the Doctors say that I am in complete remission. I am not sure but I have enjoyed this easy way of sharing with everyone. It is amazing how many people get on and read it. I think it would be a great thing to continue sharing everyone’s prayer concerns possibly for others who are facing leukemia and other cancers.

Big Fish

Well, sorry that it has been so long since we posted. I guess we could say life has just been busy.
The long list of our everyday lives has been added to in this Lenten Season. Listen to all this good stuff God has put on our plates:

1. Jody is in Godspell, I get to direct it as a community project. (Fun but I would rather be in it myself)
2. Soccer coaching starts next week for me again.
3. Coaching the Bible Quiz team in the Elementary paid off, we had 5 of the top 7 quizzers in the JR teams, and Nathan qualified and is practicing to go to nationals.
4. At church we are planning to add a new service as a once per month preview starting at the end of April. (That means meetings, planning, practice for a new praise team, communication with congregation and a lot of visioning)
5. As part of planning for growth and a new service we are adding technology to our worship space. (meaning more meetings, planning, discussion, and vision casting, then fund raising)
6. teaching and attending seminars and workshops aimed at church growth, adding services, leadership development, and starting new churches.
7. The church is working on a whole new web page. That means me doing a lot of writing of informational pages.
8. Of course the daily life of church and parishioners, a lot of prayer, and even a couple funerals.

As you can tell, all this is good stuff and we have a lot to be excited about. We would ask that you keep our community, church, and new service in your prayers as we move in faith into something very new.

Ok, that is all just excuses for why we have not written lately and I guess none of it is very good. I tell everyone, there is always midnight to get the important things done. So here I go.
Jody's last couple visits have been, as she says, "boring." That meaning that she has not reached the news that she has been waiting for. Part of her hopes with every appointment that the DR. is going to tell her that she has reached phase two of remission. Yet there is that fear in the back of her brain that is just waiting for a change in the way her body is responding. (I guess this fear has to be a very real part of everyday for anyone who has been diagnosed with cancer. Even if you have been in remission, I can't imagine that the thought of possible reoccurrence could ever completely leave you.) She is still hyper-sensitive to her body. She notices every bump, every tight muscle, every hot spot (not hot flash,) every cramp, pain, and sensation with contemplative awareness.
The good news is that she is still living in trust that God is at work healing her so she has a great measure of peace that undergirds her bodily awareness. And thus the "boring" as she calls it is the fact that the initial shock has worn off and most of life feels like it has returned to normal for her. (although our kids still fill every prayer with prayers for their mothers continual recovery and protection - praise God for thos kids)
So the question remains for most of you, "How is she doing? What have her test results showed?" Well, a week ago she took another FISH test which is a more detailed look at her DNA. This is the test that she took back in December/ January and found out she was 98% abnormal. Well, she is headed in the right direction, but not as fast as we had hoped. We got those results back and found out that she still 63% abnormal. As the eternal optimist I say halleluia we made a 35% improvement. Of course Jody will not be fully elated until she sees that number at 0% and is able to take the next test to confirm a full remission.

What can we say other that all in God's timing? As we continue to thank God for the treatability of this, and catching it at such an early phase, we also pray for patience and to accept what God gives us everyday.

We are praying for each of you as well, that God gives you patience for whatever is going on in your life. May you be filled with peace and hope, and remember that God will carry you through tomorrow.

Being Antisocial?

Antisocial, the definition in the dictionary says, "hostile or harmful to organized society; marked by behavior deviating sharply from the social norm." Can this be me? Well, I guess my blood is according to the doctor today. It has to do with my one enzymes or chromosomes and how they are not playing well with the others and pushing the others around and taking over the place. This is how Dr Gingrich sort of explained my leukemia. I really enjoyed our doctor visit to Iowa City. He is a very nice man with a lot of information but easy to understand in the way he explains things. If he wasn't in Iowa City I would probably continue to see him. Dr Sangha is great but it was just easier talking and understanding Dr Gingrich. He was full of information and there fore if you want all that you will have to tune in possibly on Monday when Craig has the chance to get more in depth with the information we received. (I think Jody did a great job of explaining, and I don't think most people want more details or a history of the disease and treatment options as they have changed over the past 12 years. But his information did give us greater understanding in what we know and how comfortable we are with this) I can tell you that he thinks I am doing great and at this point doesn't see any reason why I should have to go through the process of testing for bone marrow transplant. We asked him if it did come down to it and the meds weren't working how long would the process take. He said it would take about 2-3 weeks in regarding to testing my siblings and the possible match there. If none of my siblings were a match then about 6-8 weeks to find a universal match. To us that just didn't sound too bad. Much quicker then we had envisioned. So I did not have to have any test done today. HURRAY!! One less poke.

We asked what is considered remission. He said there are basically three stages and here again is where I wont be able to say it all right. The first stage has to do with the blood. (hematological remission) It is is no longer detectable through the blood tests. The next stage has to do with what is called the Fish test. (Some kind of physic- remission) (Don't know if it is spelled fish or phish.) This has to do more with the, I think, chromosomes (just a more detailed test) and then the third stage is another test (PCR test that looks very closely at a large group of cells to look for any Philadelphia chromosomes in the blood) where they look at things even smaller and it is no longer detected. This whole process could take up to a year or more. (There are goal time frames that they would like to have Jody hit certain levels by) He did inform me again as Dr Sangha has said this is something I will have the rest of my life as well as being on Gleevec.

Dr Gingrich talked to us for about 45 minutes. How many Dr do that anymore? We were able to bring home a lot of information specifically about CML and so will have a lot of reading to do this weekend. ( Good thing to take along to Nathan's basketball, tournament tomorrow.)

So that is the very basics of what we found out today. My appointment was at 10:30 and we were out of there by 12:30. Not too bad I thought. Again, Craig will possible write more in detail about the information we received today so stay tuned. He has a busy weekend and just didn't have time to write today but I didn't want to keep you all wondering.

Another quick update. Continue to keep my brother in your prayers as I found out on my way to my appointment this morning that he was not able to have his surgery do to the fact that the hospital didn't have a certain instrument that his Dr would not work with out. So after already having his sinus's washed and been on IV and basically ready to go they told him it was off. What a major drag. So keep him in your prayers as well.

When I got home from my appointment I was able to take a few minutes and read from my devotional, "The Upper Room" and I have to share what it said. It was titled Six Weeks and the verse was from Exodus 16:6-7 "Moses and Aaron said to (Israel),"...You shall know that it was the Lord who brought you out of the land of Egypt, and ...you shall see the glory of the Lord." After the Hebrews crossed the Red Sea, "the pople feared the Lord and believed in the Lord and in his servant Moses. (Ex 14:31) The writer writes about how when he was a teenager this story seemed to go down hill from there. He got tired of the peoples whining and lack of faith. He found it hard to believe that six weeks after the great Exodus, people began to doubt God and to think the Exodus had been a mistake.

As the writer grew older the story became more believable. He saw how quickly he himself could fall back into doubt and whining after God did something wonderful in his life. From what he's observed, six weeks is about the average life of human trust. God responded to the Hebrew's ingratitude--not by taking away from them but by increasing their blessings and working additional miracles. He didn't punish them like we would think. He gave them more blessing and miracles. Wow! God's presence was obvious.

It has been five weeks now for me with this new diagnosis. Do I consider it "something wonderful God did in my life?" Well, in a way yes. He planned for me to have this physical and for the doctor to do the right tests and find this early. That is something wonderful But am I still trusting God or am I falling back on my doubt and whining? I have to say that I probably have been doing the later of the the two somewhat. There are parts of me that think " How can I be so fortunate? Surely having cancer is more difficult then this. I really haven't had any real problems and complications."I have heard other cancer stories that have not been so good. I start thinking things will surely get worse rather then trusting that God had it planned this way all along. I think I have maybe even whined just a little about some of the small things that I have had to deal with, sore muscle and major leg cramps. I believe that this whole thing has just been an eye opener to what God has in store for me and how much He is in control of my life, not my worries and anxieties. He too has blessed me during this time and is working miracles in me. The writer ends the devotional with this prayer which is my prayer to all of you: "God, thank you for remaining faithful even when we doubt, for delivering us from bondage, and for blessing us with all that we need. Amen.