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!!

Echo-Echo-Echo

Are you wondering about my title and picture this time? Well, it has to do with my last Dr appointment I had Friday June 26th. First let me say that this was the first time my Dr appointment took two hours! I really wish they would have told me they were running behind. I could have gone and done some of my running around and come back. He did say I was the first healthiest patient he had had all day and this was at 3:30. Not a good day for him I don't think.

My reports were good. My white count was actually in the low normal range. Hallelujah! It was 4.9 and the lowest normal level is 4.8. My hemoglobin was still below normal at 11 but that isn't bad either.It is all slowly coming back up. He was not planning on me having the FISH or PCR done for another month but when I had gone into the lab they had it on their orders to draw for both of those. I am to call them later yet this week and find out what the results of these were cause Dr. Sangha said that if these were looking good that he would probably lower my medication from 800 milligrams to 600 or even 400. This would be great! Not that I have really struggled with the medication but it would help releave some of the muscle cramps I have had mostly in my hands now. Some times when doing the littlest of things my fingers and hand will cramp up and get tight. It doesn't really hurt but feel real strange and you don't have much control over it. Also the lower dosage would help with it settling better in my stomach I would think. I will report here on the blog later this week in regards to that.

Dr Sangha also talked about getting be scheduled for and echo cardiogram. Hence forth the picture. This is the part I need you praying about. Anything pertaining to my heart just totally freaks me out! It is one of my major anxiety issues. I have always worried about having some sort of heart failure. I haven't actually worried too much about it for over a year now.Since my panic attachs years ago I have had EKGs and even a stress test and everything has been normal and just fine. But my mind has a way of telling me differntly. For about a week now, but even more so since Fridays appointment, I have been feeling like I am more stressed. I thought it just had to do with the business that has been going on this past monthbut to tell you the truth I dont know exactly why I am feeling this way. I just feel my neck and shoulders are much more tight, I have definetly been clenching down on my teeth much more again and sleep has been a little disturbed. My mind keeps thinking bad thoughts. Here things have been going so well that for a short while now, even before the mention of echo cardiogram was mentioned, I have been wondering what is going to happen. My mind just gets going and thinking things like "things have been going to well, you know something is going to change. It cant all be this easy. You know you are doomed for worse things." I lay in bed and can feel how my breaths are short and how tense I am and know my mind is trying to take over.

My mind tries to make big of even the littlest of discomforts my body has. Like last night my body was a little sore from moving furniture in the basement yesterday and it tries to tell me that this is signs of heart problems. I try to pray my prayer I say all the time my minds starts going, "Do not be anxious about anything , but in everything, by prayer and petition, with thanksgiving, present your request to God." Philippians 4:6 This usually brings me comfort and eventually sleep but I more then often have to repeat it more then once. I just noticed something about this verse, a part I had been leaving out when I prayed it. The part that says, with thanksgiving. Am I thanking God for these feelings? No, more like thanking him for being there and being able to take away the feelings if I am willing to present them to him. Knowing that God is with me. I so could not get through those times and many others if I didn't know God was there. I don't know yet when my appointment will be. The person scheduling it was going to make it for the same day I went back for my blood draw in a month on July 27th. I will check on that too when I call about my blood results.

Something else my body has had to adapt to with the whole medication and leukemia stuff is my monthly period. For most of my life I have been blessed with a very slow, inactive period. But since about March my flow has been way, way more then I am use to. I am back to worrying about leaking and having to change my pad way more often. (sorry men about this but it is a part of life and what I am going through.) This has been a source of stress as well.

I will be adding a few books that I have read that have been helpful to me that you may find of interest in the book list here on this blog. The one that was really helpful with my anxiety and depression was "Calm My Anxious Heart" by Linda Dillow. This book has a lot of really good stuff in it.

So that is where I am at now with my CML and so thought I would share a little bit about what my family is and has been up too. The big news is that Craig got ordained June 7th at the Annual United Methodist Conference. A lot of family came to Ames to take part in this special occasion and just this last Sunday, June 28 we had an open house for him here out Geneseo U.M.C. We had the pleasure of seeing people we haven't seen for many years like Bob and Jean Cousens. And also meeting Craigs grandma Ferguson's neice and her husband,Merlene and Lyle Neher whom actually dont live too far from us. I am very proud of my husband and all the hard work he has had done. He is my strength and comforter.

We had the pleasure this month to camp for four days with my side of the family in Yankton S.D. It is always so much fun to just sit and relax and be able to visit and be with my folk and sibblings and their families. And of course the kids always enjoy being able to get together for more then just a short few hours and get some good play time in. They are all growing up so fast. The weather was great minus a pretty good storm that went through early one morning and I was very greatful that we weren't tenting it this year but had rented a camper.

Blessing to everyone and remember Prayer Changes Things!

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.