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!!

Still waiting!

Well, I called the Dr office Wednesday and they hadn't gotten the test results yet but that Dr Sangha wanted me to up my dosage back to 800mg on the Gleevec. I found this kind of strange. I thought he would wait till I got the results back to see if the Gleevec is even in my system. I guess I don't really know what my options are if it( the Gleevec) isn't in my system. If he will just stay with the Gleevec at the 800mg or I guess I thought he would put me on something different.

My mind is trying to take over but I am trying not to let it. (Kind of hard if you know what I mean.) Last night my right side started hurting. More like cramping. The kind I would get when my spleen was enlarged. Except this time it isn't going away. I am really thinking it has nothing to do with my spleen but more my back being out of whack. I know it sounds kind of strange but one time when I went to the Chiropractor he cracked my back and I could feel it all the way through to about the same place. Any way, I have had this cramping before but I cant say whether it has anything to do with my spleen or just me getting old and out of shape. I will mention it to the Dr tomorrow, I think.

I have been thinking I need to fast a couple days again like I did when I first found out I had this Leukemia. I felt it was my way of cleaning out my system. Maybe that is what I need to do again. I did feel better after I did that. It was only for about 3 days. I don't have the strength to go longer. Plus, this time I wouldn't be able to really fast. I cant take my Gleevec with out taking food.

So that is where I am at right now. I didn't call the Dr today. I figured I would just wait till about noon tomorrow and call again. Plus, I already have to go to Waterloo tomorrow to get my flu shot so I could get a copy of the results if they are in. Man, I hope they are in and yep, I am getting the flu shot. Guess I don't have much choice any more. It is highly suggested that I do now. I haven't had one probably since Hanna was born or before (Nine years)

Before I end I have a major prayer request. A very good friend of mines daughter, Suzanna, has recently been hospitalized in Iowa City. I use to do daycare for Suzanna's girl for about 3 years. Anyway, they did an emergency surgery on her C1 and C2 vertebra. She had been having some numbing which became very severe. She had a major infection in her vertebra and possibly spinal chord. ( I do not know all the exact details) but since her surgery last Friday she has been on a respirator and has no movement of the majority of her body except her right arm from the elbow down. They were hopeful that she would be able to get off the respirator but I heard last night that this is probably not going to happen and that she will be paralyzed on most of her body except that right arm. She just had a baby this spring and of course her 10 year old daughter. She was also recently married a year ago. This is a lot for anyone to go through but with the recent marriage and the new baby and also had just bought a house they were moving into in Oct all adds up. Please keep the family in your prayers. Suzanna is a very strong young lady. I have always admired her and how she has worked so hard and raised her child. She was a very young mother with her first child (did I mention her first child was born weighing 2 pounds) and didn't rely on her family to get her through. She finished school and worked hard to make a living for her new family. She is very dedicated. I still have hope that thing can change for her and that she can get some movement back but it will take a lot of hard work. Please pray that she does not get discouraged and that God show her himself and give her strength.

OK, so I will hopefully get news tomorrow and then have more to write about again soon. Keep praying.

Bum, Bum, Bum!!

Once again it has been a while since i have written. I am struggling. Things in the beginning were all going so fast and for the last three months they seem to be at a stand still. I know I talked about plateaus before in regards to my blood being at a plateau. This time it is the action we have been taking and what seems the lack there off that has come to the plateau.

I saw Dr Sangha August 28th for blood draw and to see the Dr. I had forgotten or didn't realize that at my July 27th blood draw they had drawn for the FISH test as well. When I was in this last time he was a little concerned about those test results. My count had gone up. From .06, to .12. So they did another FISH test on the 28th. Dr Sangha just said that it could just be a "bad batch" or a "Bad run" per say. At that moment of my appointment I really didn't worry or think about it. He had told me this could happen. Plus, I was in a MAJOR mood at my last appointment, due to my plateau I was feeling and not feeling like I was getting very good treatment from the Dr and nurse in regards to getting test results and the what not. But something inside me said that Dr Sangha was thinking this was more then just a "Bad Batch." I just wasn't really wanting to hear i t just then. He told me to call a week from Monday and check in with him in regards to the results.

My white count that day and the rest of my results were still looking good. My white count was at 5.3 which is on the low end of normal but good. I asked about if I should be checking into getting flu shots and what not and after some him hawing he said I probably should. Kids at school have already been getting the flu and it is only Sept, the start of a new school year. I need to call Dr. Christiasen about that yet.

So today, I called to get my FISH results. I was impressed this time that the nurse could actually tell me the results this time but wasn't sure if Dr Sangha had seen then yet so said she would check with him. I got a call back about 12:30 and it was actually Dr Sangha. You know it isn't good when the Dr actually calls you back. My FISH has gone up from .12 to .3 now. Now I have to go back in on Thursday morning at 8:30 to have another blood draw. He wants me to not take my Gleevec that morning and see how much Gleevec I have in my system. He says there are some Leukemia's that after a while start to like resist the Gleevec. Then after my blood draw I can take my pills. My number could be going up just because we lowered my Gleevec from 800 to 600. If that is the case it will be an easy fix. If not, then I am not sure what we will have to do. Craig says there are other super Gleevec meds that I can take and try.

So now it is another waiting game. I don't know how long it will take to get this test results back come Thursday but I will get back to you when I know more. My mind of course is struggling not to think bad thoughts but I can trust that my counts are still at a controllable level and still quite low so that is great. We have caught this early. I can tell myself all this one moment but then the next worry like you wouldn't believe. I have to admit, I had a hard time not crying when he first told me my count really was up. It was a good thing I was at work and was extremely busy testing kids all day and didn't have much time to think about it. In fact, I stayed busy up until 7:30 with Hanna's soccer practice and then Nathan's. And by the time I got home I was almost too tired to think too much on it. Tomorrow will be yet another very busy day. Even more busy with more testing at school and then Bible Quizzing, followed by bells practice, Praise team practice, and then Choir. Then before I know it, it will be Thursday morning.

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.

It's Happening!

The "Mind Monster" is coming out of hiding and wanting to play with my very susceptible mind. I told you before that my mind will probably start taking over and make me think bad thought if I wasn't going in every week for my blood draws. It is starting to happen.

I was doing great till last Friday when Hanna and I were in Waterloo to get a few things. I was driving down the road headed to the side of town where my cancer clinic is when my body and mind tried to take over and keep going till I got there. It has been such a habit for three months to go there every week. Now it has been two weeks and I am going through withdrawal I guess.

That is when my mind started kicking in and started sending me message about little things like any ache or pain I have may be a bad sign. I know these things are not true or at least I want to know they are not true. I mean, God really has not laid on my heart that things aren't well. As I am writing this I am reminded of a verse I liked to quote a lot and is probably one of my favorites because it has gotten me through a lot of tough "mind times". It is Philippians 4:6-7"Be anxious about nothing, but in everything through prayer and petition make your requests be known to God and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus." Doesn't that just say it all?! What a blessing those two verses have been to me the past few years. Especially when I was first dealing with my anxiety and depression. Those wonderful "mind games."

My prayer for the next few weeks continues to be for my health but also for Gods peace that surpasses all understanding. That God stomp out those "Mind Monsters" and let me have peace.

I also ask that you continue to pray for David Glassner who is dealing with A.L.L.. I talked with his sister last Sunday and he is doing very well. The doctors are very hopeful. His recent bone marrow looked very good. His white count is down to 6.2 and hemoglobin was at I believe a 10. He will have chemo I think it was for one week a month for the next three months and then see where he is at after that. Pray for strength and peace of mind for him as well.

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.