Hmmmmm?

Guess what! I finally got my test results. Of course I also had a Dr appointment today too. The nurse asked when she took me back if I had any questions or concerns for the Dr and I just said, "I'm waiting for my test results." She said "From today?"I replied, "No, two weeks ago." She just said, "oh" and left. Real helpful. Well, that might all change. My test results said everything was looking good. That my Gleevex was staying in my body like it was suppose too but then why are my numbers going up? For some unknown reason in some people the Gleevex sort of stops working. It stops killing off those pesky mutating chromosomes. They are finding a way to fight through my Gleevex. The good news is that there are still other drugs out there that have worked that we will try. Now don't ask me their names. I couldn't tell you. They are nothing I have heard of before.

While we were in the office with Dr Sangha he called Dr Gingrich in Iowa City and conferred with him. It made me feel good that he has been talking with him. I always felt good about when I saw Dr Gingrich the one time and deep down sort of wished I had continued to see him. Well, my wish may be coming true. There is a drug that they have been doing group studies on that I may take part in. I would need to go to Iowa City however for some of the blood work. So we are going to be making an appointment to visit with Dr Gingrich and get more information about both of the two drugs and decide then which to try. At this point I will continue to stay on the Gleevex.It may not being working completely but it is keeping my white cells down and that is good.

So that is really basically where I am at for now. I do have another appointment to see Dr Sangha in a month. I am not really worried about my counts going up right now. The way we are looking at them is on such a molecular level that it is totally still manageable but good that we are catching it now rather then much later. Dr. Sangha said too that it isn't anything at this time to be worried or panicked about. There are still many options out there for me.

I wrote last time about how my mind was taking over and I was afraid I was feeling symptoms of my leukemia getting worse. For example cramping around my spleen. Well, it really was the chiropractor that helped. And as far as the fasting goes, well that hasn't happened yet either. Maybe one of these days. I know I would probably feel better if I did. I know when I stepped on the scale it would be nice if it said just 10 pounds less. I don't think I mentioned last time that I was getting my flu shot. Well, I got that last Friday and man was that NOT fun! That night my mind started working over time. I hadn't had an anxiety attack like that for quite a while. I felt like I was having an allergic reaction. My eyes were itchy, and my chest was congested. My mind just went into over drive that I wasn't going to be able to breath soon. Needless to say I was fine. However when I got up the next morning my eyes had a lot of goop in them and they were beyond puffy!! It was really scary. My son even said in the morning, "What kind of flu shot did you get mom" My mind will always be like that but I can see the signs, my not breathing (as my husband says) and just the feeling I get in my stomach. I am thankful that I have Craig to go to who can just sit with me and remind me to breath more often then what I have been and that I will be just fine.

This past weekend I was able to finally meet David, whom i wrote about a long time ago, who was diagnosed with AML (Acute Mylogenous Leukemia) shortly after my diagnosis. Just an update on him. He is in complete remission but will continue to be tested on a regular basis. God is good!! I know he thanks many for your prayers and I can look to him as an encouragement. He has had to go through a lot more then I have and look how well things turned out for him.

Also, this evening we, as a family, had the privileged to have dinner with our friend Connie whose daughter had the severe infection in her C2-C3 vertebra, had an emergency surgery,and was put on a respirator and basically had no feeling in her body from the neck down. Her daughter, Suzanna, was taken off the respirator Tuesday and has been able to stay off with out needing to have a trachea put in. And the same day she had some pain in her left arm. These are all wonderful steps and proves what a fighter she is. Of course the doctors and nurses aren't saying a whole lot yet and are thinking that the pain she felt may just be phantom pains but I truly believe it is God working slowing in and through her. Continue to pray for her.

Just an update on my family. We all continue to stay VERY busy. (I think that is an understatement) Anyone with kids knows how it is. Both kids are involved in soccer and Craig and I are coaching Nathan's team. This is the first year in many that we have had a U-14 team so that is pretty cool. He has his first game on Saturday and Hanna has her second game Saturday. She won her first game which was really good being's they had never played on their field till that day. So soccer keeps us busy with each having practices twice a week and games on Saturdays'. Last Saturday was our first Bible Quiz match. Our teams did great. Of course both kids are involved in that as well as Craig and myself. One of our junior girls placed first. Then there is the busy Wednesday schedule at church with bell practice, praise band, and choir practice. We had our Ice Cream social last week and that was a wonderful turn out. There was 14 pork tenderloins cooked up, and 38 gallons of ice-cream made and there wasn't much left at the end of the night. So with work on top of all of this,and being a mom, how am I suppose to answer when the Dr asked if I am feeling tired? What do you think!!

Time Off for Good Behavior

Whew Hooo! Guess what. Dr Sanga said at my visit on April 10th that I did not have to come back again for blood work for a month and not see him again for 6 weeks. He was pleased with my last FISH test and my CBC so said he felt good about not having me come in every week for a blood draw. My next draw will me May 8th when I will have another FISH test as well as my first PCR. PCR stands for Polymerase Chain Reaction which is a sensitive test that can measure the presence of cancer cell-markers in the blood. PCR is used to detect remaining cancer cells that cannot be detested by other test. This will show when I am in my 3rd stage of remission. I don't expect this to happen for at least another month but it will be nice to see what the results are. Once that is down where it is suppose to be then I will have another bone marrow done and tested to say I am in complete remission.

Craig was excited about this news as well but he also made a comment saying, "Now you will be paranoid for the next month I suppose." Well, he is right. With out the weekly checks to see that things are going ok it is easy for my mind to wander and wonder if things really are ok. My mind hasn't been too bad. This is the first week I haven't had to go in and so that was kind of unusual for me. My body and mind was just getting use to going in every week and my car new the way quite well. I am sure as the weeks go on that my mind will wonder more and more.

Dr Sangha did admit that he was somewhat concerned in my result for the FISH test previously before this last one in the fact that it wasn't down to where he had thought it should be. So was glad to see that the last FISH test was down as far as it was. He was a afraid my counts could have been on the rise. But see how your prayers have kept me safe. I will need to remember that in the up coming weeks.

My pills have all of a sudden started making me feel a little "icky" after taking them. I have always eaten something before taking them and it never really seem to matter what it was as long as it was a fairly decent meal and not too little. Well, now no matter what I eat it just seems to be making my stomach a little upset. I have tried eating things different and taking the pills at different times of the day but nothing has helped so called the Dr Friday. The nurse said to try to take the pill Dr Sangha prescribed when I first got the Gleevex for nausea that I never had to take and see if that helps. It does seem to be helping so far.

My prayer for me right now is that my mind doesn't get too paranoid with not know for sure what my counts are and that my pills don't continue to cause me any upset stomach aches. Not that they are terrible but they are annoying and bothersome.

In my last update I asked for Prayers for a David Glassner who was diagnosed with AML. I need to correct that some. He was diagnosed with ALL which is Acute Lymphocytic Leukemia. He has had chemo treatments and he recent blood counts and last bone marrow after the chemo is looking good and doing what the doctors want. I just ask that you continue to pray for him as he will be having more chemo but less often and that he continue to get to have strength and know God is with him and his family.

Thanks, I needed that!!

As many of you have read and maybe know I have been feeling a little down as far as my counts have been going. It just hasn't seem to be going anywhere. I have also been thinking in the back of my mind (where I do some of my worst thinking) that things just weren't going well and that I felt and thought that maybe things were turning for the worst. I really didn't have any reason to be thinking this. There had been a few things that I have noticed physically. For example, I have two bruises right now and for some reason my mind wants to make those bruises evolve into much more and worse thoughts. For heavens sakes! They are just bruises and we all get them and with two kids and being involved in this production of "Godspell" it is to be expected. Nothing more. But my mind just takes things so out of proportion! And it has been those kind of thought that get me to thinking that things really aren't as good as it seems.

In a way this has been kind of good. Sound weird? Well, with things just kind of being "normal" or "mundane" I had forgotten how thankful I am and was not going to God like I should. Studying his word, talking more with him. Even with doing "Godspell" and hearing the parables in Mathew on a nightly bases I seem to have become numb to it all and used the excuse that I was just too busy or tired and that God would understand. Well, thankfully He still loves me even when I am not paying attention like I should be and know when I need a little reminder. So that is just what he did. He gave me a reminder.

Last week I went and had another F.I.S.H. test done and wasn't really looking forward to the results. The last time the results weren't what we had hoped for so why should they be any different this time. So to the Dr's I go. The lab techs call me back and (they are always so pleasant and nice to talk with) and for the first time in four months she didn't get my vein. Actually my vein had rolled I guess. So she had to go digging for my vein (being very apologetic.) But here I was, already not looking forward to hearing my FISH results and then this happens. She thankfully didn't have to poke me again and was able to get what she need with just a little digging. So then I ask the dreaded question as to whether they had my results from my FISH test. So she went back and check and they did have it and then starting talking about about how good it was. In my mind I really thought that it would probably be at like 38%, but then I heard them say something about 6.2. I thought to myself, "surely that isn't my FISH results. That sounds more like my white count." So I said, "Is that my FISH or my white count?" And the nurse replies that it is my FISH. WOW! What a jump!! How amazing!! It had gone from 63.4% to 6.2% in one month. Do you know what this means? It mean (I believe) that I am really close to being in my second stage of remission. At least this is the way Craig and I are interpreting it and will find out more when we see Dr Sanga next week. So in basically three months I am about in my second stage of remission. This is amazing!

Now my white count was about the same as it has been, 3.5 and hemoglobin at 10.3. I am not sure when we will start seeing those numbers start to normalize. If it wont be till I am closer to my third remission or what.

So now I am feeling guilty for ever doubting and having those terrible thoughts. Look at how God has been there with me this whole time but I have lost track or him in my business and normalcy. Why do we let ourselves do that? We have heard it over and over again about how God is always with us but yet it takes things like this to open our eyes and see the truth.

In the past three months I have been attempting (but not doing well at recently) reading the New Testament.I have only gotten as far as Matthew, Mark, and Luke and the thing I am getting out of it the most right now is how often Jesus looked at his disciples shaking his head and saying things like "You Fools. When will you ever learn? Your faith is so little." There is a line in "Godspell" that Jesus says to us when he has left to go pray and comes back and finds us asleep that just always makes me think. He says , "Oh, the Spirit is willing but the flesh is weak!" Isn't that how it is with us? We have the spirit and the desire and knowing but yet we give in to our human ways. I mean think about it. Jesus was with these disciples. He was real to them. They could see him and touch him, eat, drink and sleep with him but yet their own flesh was weak. All we have is the Bible and the stories to guide us and the just knowing he is always with us and we cant do any better. I challenge each of you along with myself especially this week to make more of an effort to take the time that God deserves. Read his book, meditate on his word and most of all talk with him. I know I will stumble and fall and that my flesh is weak but I also know that I have not been putting my whole heart into it either. Take time with God daily this week and see if you can hear God saying, "Well, done my good and faithful servant. Well, done."

I have a couple prayer request for you to talk with God about. First, we have a member of our congregation whose brother was diagnosis with AML a couple weeks ago. This a the same form of leukemia that I have only my is chronic and his is acute. His name is David. He has had to have his first round of radiation/chemo and I have heard that he is doing well so far. I do not know what his counts are or any of that but ask that you keep him in your prayers. For something that you don't hear much about CML or AML I find it strange that in four months not only myself but someone else has this same thing.

I also ask prayers for my friend of mines sister who I have known since I was in Jr High who has fought, with much diligence, Neurofibromatosis, Type II since 1988. Since then she has had 50 surgeries/procedures. Neurofibromatosis is the development of symmetric, non-malignant brain tumors in the region of the cranial nerve. Her face is misshapen from tumors and surgeries and she has lost her hearing for most of this time until she had her ABI (Auditory Brainstem Implant) put in 2006 and was able to hear "sounds" but not words. At her last visit her doctors, who were very good to her during this whole thing, told her, "Sorry, we wish we could have done more." Basically there is no more they can do for her. She was not expected to see her 18th birthday and she is now 33. She has never known life without pain. She tolerates it with medication. She says she know where she is going, just not in a hurry!! We use to joke and call her the "Energizer Bunny" how she just keeps going. Anyway, her name is Dorisa and I would really like your prayers for her and her family.

One last thing. I had asked for prayers for my brother Todd in the past and he is doing exceptionally well. He had his surgery and it went even better then they expected. I have talked with him a few times since and he sounds so good. He is even getting back to work. They thought at first he would have to have another surgery down the road but it is looking like they will not have to do that either. Praise the Lord. God is Good!!

Thank you all for your wonderful prayers and keeping us up lifted. Thank you also for the comments some of you have made. I keep them all. God Bless.