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.

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.

The Shack - Believing God works all thing for Good

As a Church our Lenten Study this year is delving into the hotly debated book, The Shack. There is no doubt that it has a load of theology that is intertwined in a fictional book. And as with any human attempt at expressing the qualities of God, we must remember that we cannot get it fully right until we actually experience it and see God face to face. (I do however believe that this book offers a hopeful and well presented redemptive theology for people who have previously been wounded by the church and felt like God had abandoned them. *Actually I like the book a lot)
But I guess that is not why I am sharing about it in this blog. As I am digging through it and writing the questions that we will be addressing, one thought came out that I fully agree with, and believe is a breaking point for many people. At one point in the book Mack is interacting with the Holy Spirit (Sarayu) and they are dialoguing about his understanding of good and bad. Mack actually realizes that he needs to release his human judgment of what is good and bad because in his finite nature he could not know how God would eventually turn things. Sarayu continues one of his thoughts, "in one instant the good may be the presence of cancer or the loss of income - or even a life."
In truth we all hear people regularly sharing their hurts and pains. In fact many of us may on occasion bemoaning our own desperate situations. But in reality how do we know, or why do we believe that in the worst of moments God will abandon us. Or even worse why would we be so arrogant as to judge God as the one who caused that pain in our life.
I love this point in the book, and the theology that it offers. It basically reminds us of the fundamentals of scripture. God loved us so much that he took all of our pain, hurt, brokeness, and sinfulness to the cross for us. It is God's nature to redeem us out of pain, not to bury us in it.
So I hope you are all hearing these words as encouragment. Take heart whatever situations you face. God is hope, love, and peace for us when the waves of life turn against us. If you find yourself in one of those times, whatever you do don't bury your head in the sand believing that wave will overcome you. Instead look up with hope for God promises to turn all those terrible waves into the towel and basin with which Jesus will wash your feet.
In writing this I am stating without a doubt that God has already blessed us, strengthened us, healed us, and given our family hope through the presence of Leukemia in Jody's life. We know that not all the days will be easy, and that the future is unsure, but we do know that God promises to walk with us, and use the very source of our pain to bring about the best good for our lives. This is what it means for us to live victoriously. It is not that we are proclaiming our victory over the disease, but we are claiming victory through Christ in the way we respond to its presence in our family.
If any of you are struggling with issues of pain and believe you are alone. Remember God is with you, and let us know so we can be praying for you. With Christ we can all live in victory. Amen.

Don't Waste Your Cancer

One of my favorite authors is John Piper who wrote -Desiring God

He writes this article which I believe very clearly states how Jody and I have determined to live into her current diagnosis. It is not always easy, but with God's help and a lot of love from each other, friends, and family, we are doing our best to let God shine through even this most difficult time. Enjoy these top ten. (Also find the link to his whole article below)

1. You will waste your cancer if you do not believe it is designed for you by God.

2. You will waste your cancer if you believe it is a curse and not a gift.

3. You will waste your cancer if you seek comfort from your odds rather than from God.

4. You will waste your cancer if you refuse to think about death.

5. You will waste your cancer if you think that “beating” cancer means
staying alive rather than cherishing Christ.

6. You will waste your cancer if you spend too much time reading
about cancer and not enough time reading about God.

7. You will waste your cancer if you let it drive you into solitude
instead of deepen your relationships with manifest affection.

8. You will waste your cancer if you grieve as those who have no hope.

9. You will waste your cancer if you treat sin as casually as before.

10. You will waste your cancer if you fail to use it as a means of
witness to the truth and glory of Christ.

---

John Piper has been the Pastor for Preaching at Bethlehem Baptist Church in Minneapolis, Minnesota, since 1980. He has authored numerous best-selling books, including The Passion of Jesus Christ, Don't Waste Your Life and Desiring God.

Find this article at: http://www.crosswalk.com/1383847/

Survivors Guilt

With the most recent visit to Iowa City I have to admit I am experiencing a great deal of elation with finally understanding what the doctors have been trying to explain to us for a long time. This particular form of Leukemia has had a lot of advances made in the treatment process during the last ten years. And while we still have to go through the process of destroying the leukemic cells in Jody's body, and replace them with healthy normal cells, It almost feels too easy, and not fair.
Let me explain that... As a pastor I have seen many types of cancer many times. I have witnessed long term battles for life that have had long terms of remission and re-occurrences, and I have seen people diagnosed and then last only a month or few weeks. And I have witnessed the agony of radiation and chemotherapy and their "side effects" or "major effects."
Now I love my wife and as I said, I am elated with the news that her health can be for all essential purposes normal, and that she can live with this CML for a long time without ever knowing it is there. The expected benchmarks for her on this medication is to be in full molecular remission in a period of 12 - 18 months; that fact is astounding. From then on she will join a group of cancer survivors for the indefinite future. However, even in the peripheral role of husband I feel like I living in the midst of experiencing shell-shock, or survivors guilt or something along that vein.
I do not know if it was the fact that we had built ourselves up so much for the magnitude of devastating news, or that as a pastor I just witnessed two beloved members be diagnosed with cancer and live only a few months after their diagnosis. Maybe it is this fact that makes me feel like Jody's and my good news is unfair to those who have experienced such devastating news only to be followed up with the final blow known as death.
Of course as a pastor again I believe that death for those who have a saving relationship with Jesus is nothing to be feared and in fact it is the greatest news of life that one can hope for. However the reality of pain that we who remain experience is undeniably difficult despite the depth of faith and hope that we claim.
For now all I can do is say "Thank You God for gifting us with a treatable form of Leukemia, and thank you for the years of life, happiness, family, and ministry that we have in front of us."

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."

First Cancer Center Visit

Well it has been two weeks now since Jody’s diagnosis and although not a lot has changed it feels like the world has changed; everything looks different. We walked into the “Cancer Treatment Center” for the first time. It was harder for both Jody and I than we thought it would be. Just putting the title on it once again brought the reality fresh into the center of our reality. We felt out of place, uncomfortable, like everyone was looking at us. We were well under the age of others around us, and although cancer is not fair when it enters anyone’s life it seems disproportionately unfair when one is so young. Afterwards we went out to eat at “Red Lobster” and then and new pair of pants for Jody at Wal-Mart. (All the While I was on the phone with Insurance – bleh)

Here is the basic update info for all of you who have been holding your breath.

We now have an insurance case manager who is assigned to us. This means that as we have questions she is supposed to help us and will be the one to make decisions about extra treatment and care. She has been on the Gleevec now for 5 days. She has virtually no side effects that we have noticed. I am the one sick from already meeting our yearly family pharmacy deductible. ($5,000) (Laugh for me – I can’t yet)

Her white cell count has come down a lot – only 185k now – this is good, but she still has a long way to go to get to the recommended 5-10k. Dr. Sangha said she is 98% abnormal – I guess we all had some suspicions about that. (laugh with me this time) This means that a majority of her blood is composed of the Philadelphia chromosome that is the key to identifying CML.

We asked a lot of questions

How common is this? - Not very

Do you have any other patients? - Roughly 5-6 in the area

Working at the school? - Just wash hands regularly.

How to read blood count numbers? - Blah, blah, blah – funny thing is I think I got most of it

What to expect and plan for in the months ahead?

First two months just getting her levels back to normal. Sometime after that we will get a consultation in Iowa City for info about Bone Marrow Transplant. As long as the Gleevec is keeping her cells in check this is probably not the course of action to pursue. Possibly this will lead to seeking matches through siblings for future.

How often will we need to see you? - Every week in the clinic for blood tests – keep track of levels. Then once per month to consult with him about any changes we notice or the blood levels indicate.

Can we get copies of all Jody’s tests? - Yep – and they are on file.

Many others…

We do feel comfortable with Dr. Sangha and what we are learning about Jody’s condition. We are “Living Victoriously” believing that we have already overcome this. By looking at Jody you would not be able to tell that there is anything wrong with her. She is coping with all this very well, but still fights her emotions on occasion when the overwhelming reality and her imagination gets the better of her. We have been walking together on a regular basis in the mornings and our nightly prayers have become an essential part of the day. I get to cuddle more than ever, and she just treats me like her big teddy bear. You know sometimes it takes devastating news to remind you how much you love someone. I pray you all will take a moment to tell the people in your life that you love them, and remember Jody and I love you too.