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!

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.

Night time

When the lights go out and the kids are in bed, after a game on the computer, the local news, or a rerun of M.A.S.H. and Jody and I slow down we find the silent darkness meets us. It is a darkness that is familiar. Jody's routine involves locking the doors and checking them twice, checking on each of the kids, then if I come to bed after her making sure I do the same thing.

Once we finally make it to bed I become the teddy bear. (I think the amount of snuggle/smother has increased over the last month, that is a good thing in my eyes) Then before our minds slow down we take a moment to pray. Sometimes our prayers are lengthy, including everything on this green earth, sometimes it is simply prayers for peace and healing. Our prayer times have certainly become an important part of ending our day, or at least starting our night.

Oh, here is a powerful and emotional item that I promised myself last night I would add to our blog. As you may know we are a praying family. We pray before meals, at bed time and throughout the day as God leads us. On top of that, we still take the time to tuck our kids (11, 8) in to bed. Amazingly enough this seems to be a favorite part of their day. Both of them love to hold on to us and want us to lay with them (sometimes just talk about nothing other times just hold each other as they drift off to sleep) Well, as we have come to face Jody's CML diagnosis and realize that it is something she will have the rest of her life, I have asked the kids to pray for their mother. And oh how the prayers of a child will take your breath away. Last night I went to tuck my kids and each of them in their turn took the initiative to pray for their mother. They were profound prayers, simple in wording, but infinitely filled with love and compassion. "Please, please, please God help my mommy get better" The words they spoke revealed their uncompromising devotion and their deep understanding that this could be a life threatening disease. (Hanna even asked me two nights ago if her mommy could die from this... Of course I had to say "she could" but we don't think that is going to happen) My kids bed times have become a powerful spiritual time and an emotional roller coaster as I am never sure what kind of prayer will come out of their mouth. I am sure there will be days when their faith will minister to many people, even their parents.

Now back to mom and dad. After our prayer time we hope that tiredness overtakes us, but often Jody needs some time to talk through all the thoughts that her mind has processed through the day. (This is a good thing, she didn't used to be one to talk and share her inner thoughts - she is getting much better now) Unfortunately many of those thoughts come from the school of WRW - Women's Right to Worry. I don't know where they get it from, but women have this inborn ability to think up the craziest things. Of course now that Jody has CML - she just looks at me and says, "See I told you so." I try and tell her, if you worry about everything under the sun, one of them is bound to come true. - I guess I can't win that one.

Often her discussion time just gives her the opportunity to process how she has been feeling, or why she has been "so cold." Once she understands the side effects of medications, or the symptoms of less hemoglobin, then she is usually able to relax and fall asleep. However there are the nights when she just can't get out of her mind all the possibilities that the next few years hold. As a mother has the right she is fearful that she will not be able to see her children grow up. (We don't really believe that will be the case, but it is fair to admit that we have to struggle with the thoughts that reoccur)

After sleep has finally taken us it has become a normal thing sometime in the middle of the night for Jody to throw her leg over me and say, "help." She has been getting leg cramps in her calf that she can't push through herself. I reach down and pull hard on her toes and have to reminder her to relax. This morning that didn't happen until about 5 AM. Nothing to big, and if that is the worst side effect from medications and walking on a regular basis I think we can live with it.

In all, we realize that night - as our down time - is when the emotions can get the better of us. It is also however the time when we pray for peace and relax as we trust our everything into the hands of God. We don't know what each of you are facing today, but we hope that you too will pray nightly for peace and trust your lives into the hand of the prince of peace - Jesus Christ.

January 15- Blood Results

Today I went for my blood draw at the clinic but with the temperatures starting out the day at a -28 I told the lab tech that getting my blood may be a little difficult. I went for the first time on my own. We didn't have school for the second day in a row and to be honest I got caught up playing Super Cow on the computer and was a little late for my appointment. Craig was busy writing his sermon and lost track of time as well so it was just easier if I went alone.

It wasn't as scary this time, going to "The Cancer Center." I knew where I was going and what was going to happen this time. The people there are very nice, friendly, and helpful. I didn't have to hardly wait which was good cause their TV reception was terrible. Guess it was cold too. I told the lab tech that I would like to have a copy of the results and she said she could do that with a little hesitation. They only took one vile this time. Whoo Hoo!!

The lab tech had me sit in the waiting room, still no good TV reception but it was only for a few minutes. She came out holding my test results and proceeded to tell me that my white count was down considerable to 104.0, and my platelets were down to 432 ( I am almost normal there) but that my hemoglobin was below normal at 8.2 (Normal being 12-16) and she would have to talk with Dr Sangha and check with him if he wanted me to have a transfusion. I don't know why but the word transfusion kinda scares me. She left and I was in the process of trying to call Craig when Dr Sangha came out and said everything looked good and yes my hemoglobin was low but that I was young and it should be OK for now. Then he left. I got my test results and I left too.

I called Craig back to tell him what was going on and Craig remembered Dr Sangha saying that he usually waited till the hemoglobin got down to 7 before he starting doing transfusions. That made me feel some better.

OK, now for those of you that REALLY know me, you know that I am a very warm blooded person. Even in the winter time I can usually get away with one layer and keeping the house at a comfortable 65. Well, this past week especially I have been down right COLD and it stinks but now I know why. I don't have any blood circulating through me to keep me warm. I now have to join the ranks with my sister-in-law, co-worker and many others that I have teased for years about them being so cold and put the extra layers on. Sorry ladies for all that teasing. It is true, you will now see me wearing three layers on top and pants with the possible long johns on underneath, a pair of thick socks and great grandma Ferguson's slippers on.

So for now that is our update where we are at now. I did think the Dr was going to be checking my Uric Acid levels too but don't see that on my test results so will have to call about that tomorrow too. Also after my blood draw I did some running around. First, to pick up my prescription of Cymbalta. For those of you that don't know about two years ago I had a panic attack and found out that after several more similar attacks that I was struggling with Depression. This is something I think should be talked about more. It is nothing to be ashamed of. If you think you may be struggling with depression I highly suggest that you talk with your doctor about. There is nothing wrong with being on medication if it helps. Anyway, for the first time when I picked up my prescription it didn't cost me anything. Our deductible was met and for the rest of the year it wont cost me anything. Pray about this as we are still struggling to understand our insurance. Especially for Craig.

After I picked up my prescription I went to Walmart to pick up a few things and as I was there Dr Sangha's office called to tell me that a Dr Singrich, or something like that, from Iowa City was going to be following me. OK, I have no idea what this means he will be following me and not sure I want to go there. Dr Sangha's nurse was gone already and this lady was just relaying the message. I said I would call the nurse Friday. Then I can check on my uric acid too.

Then later in the night I received a a call from the American Red Cross asking if I could donate blood. Poor lady if she only knew I was the one in need of blood. After politely informing her that I had been recently diagnosed with Leukemia I asked her to take me off their list.

Well, now you know what we know. I want to say, "Thank you, Thank you, Thank you, for all your cards, and emails. I have truly been amazed and blessed by all of them and even from people I don't even know. It has been a big encouragement."