Being Antisocial?

Antisocial, the definition in the dictionary says, "hostile or harmful to organized society; marked by behavior deviating sharply from the social norm." Can this be me? Well, I guess my blood is according to the doctor today. It has to do with my one enzymes or chromosomes and how they are not playing well with the others and pushing the others around and taking over the place. This is how Dr Gingrich sort of explained my leukemia. I really enjoyed our doctor visit to Iowa City. He is a very nice man with a lot of information but easy to understand in the way he explains things. If he wasn't in Iowa City I would probably continue to see him. Dr Sangha is great but it was just easier talking and understanding Dr Gingrich. He was full of information and there fore if you want all that you will have to tune in possibly on Monday when Craig has the chance to get more in depth with the information we received. (I think Jody did a great job of explaining, and I don't think most people want more details or a history of the disease and treatment options as they have changed over the past 12 years. But his information did give us greater understanding in what we know and how comfortable we are with this) I can tell you that he thinks I am doing great and at this point doesn't see any reason why I should have to go through the process of testing for bone marrow transplant. We asked him if it did come down to it and the meds weren't working how long would the process take. He said it would take about 2-3 weeks in regarding to testing my siblings and the possible match there. If none of my siblings were a match then about 6-8 weeks to find a universal match. To us that just didn't sound too bad. Much quicker then we had envisioned. So I did not have to have any test done today. HURRAY!! One less poke.

We asked what is considered remission. He said there are basically three stages and here again is where I wont be able to say it all right. The first stage has to do with the blood. (hematological remission) It is is no longer detectable through the blood tests. The next stage has to do with what is called the Fish test. (Some kind of physic- remission) (Don't know if it is spelled fish or phish.) This has to do more with the, I think, chromosomes (just a more detailed test) and then the third stage is another test (PCR test that looks very closely at a large group of cells to look for any Philadelphia chromosomes in the blood) where they look at things even smaller and it is no longer detected. This whole process could take up to a year or more. (There are goal time frames that they would like to have Jody hit certain levels by) He did inform me again as Dr Sangha has said this is something I will have the rest of my life as well as being on Gleevec.

Dr Gingrich talked to us for about 45 minutes. How many Dr do that anymore? We were able to bring home a lot of information specifically about CML and so will have a lot of reading to do this weekend. ( Good thing to take along to Nathan's basketball, tournament tomorrow.)

So that is the very basics of what we found out today. My appointment was at 10:30 and we were out of there by 12:30. Not too bad I thought. Again, Craig will possible write more in detail about the information we received today so stay tuned. He has a busy weekend and just didn't have time to write today but I didn't want to keep you all wondering.

Another quick update. Continue to keep my brother in your prayers as I found out on my way to my appointment this morning that he was not able to have his surgery do to the fact that the hospital didn't have a certain instrument that his Dr would not work with out. So after already having his sinus's washed and been on IV and basically ready to go they told him it was off. What a major drag. So keep him in your prayers as well.

When I got home from my appointment I was able to take a few minutes and read from my devotional, "The Upper Room" and I have to share what it said. It was titled Six Weeks and the verse was from Exodus 16:6-7 "Moses and Aaron said to (Israel),"...You shall know that it was the Lord who brought you out of the land of Egypt, and ...you shall see the glory of the Lord." After the Hebrews crossed the Red Sea, "the pople feared the Lord and believed in the Lord and in his servant Moses. (Ex 14:31) The writer writes about how when he was a teenager this story seemed to go down hill from there. He got tired of the peoples whining and lack of faith. He found it hard to believe that six weeks after the great Exodus, people began to doubt God and to think the Exodus had been a mistake.

As the writer grew older the story became more believable. He saw how quickly he himself could fall back into doubt and whining after God did something wonderful in his life. From what he's observed, six weeks is about the average life of human trust. God responded to the Hebrew's ingratitude--not by taking away from them but by increasing their blessings and working additional miracles. He didn't punish them like we would think. He gave them more blessing and miracles. Wow! God's presence was obvious.

It has been five weeks now for me with this new diagnosis. Do I consider it "something wonderful God did in my life?" Well, in a way yes. He planned for me to have this physical and for the doctor to do the right tests and find this early. That is something wonderful But am I still trusting God or am I falling back on my doubt and whining? I have to say that I probably have been doing the later of the the two somewhat. There are parts of me that think " How can I be so fortunate? Surely having cancer is more difficult then this. I really haven't had any real problems and complications."I have heard other cancer stories that have not been so good. I start thinking things will surely get worse rather then trusting that God had it planned this way all along. I think I have maybe even whined just a little about some of the small things that I have had to deal with, sore muscle and major leg cramps. I believe that this whole thing has just been an eye opener to what God has in store for me and how much He is in control of my life, not my worries and anxieties. He too has blessed me during this time and is working miracles in me. The writer ends the devotional with this prayer which is my prayer to all of you: "God, thank you for remaining faithful even when we doubt, for delivering us from bondage, and for blessing us with all that we need. Amen.

The Count Down Continues?

First off I have a prayer request. My brother is going in for sinus surgery this morning and I would really like your prayers. They are not exactly sure what they will end up doing until they get in there and see what all the snot is about. (hahaha Sorry Todd) So please keep him in your prayers.

Ok, As many of you know I had my routine blood draw Thursday afternoon and my counts continue to go down. My white count was 7.5. My hemoglobin has done well and stayed at 8.3. The lab tech had a note to let Dr Sangha know so I sat and waited and he came out and asked when I was going to Iowa City. I told him tomorrow and he got up and left. I was left wondering what that was about. Then I could hear him on the phone. He soon came back and said I would need to stop at Allen hospital and pick up my slides of my aspiration from the lab and take them with me. Then I asked him about my Gleevec and if he was going to lower my prescription since I was "normal". He kind of laughed and said we still have to get me down to "0". I didn't know what to say. I really should have Craig there with me so he can jump in and ask the questions.

This morning Craig and I are going to Iowa City to see Dr Gingrich. Not sure what will go on there but we have copies of all our reports and of course our slides so we will see what he has to say. They say to expect to be there for about 3 hours. I am a little concerned as to what they are going to do to me for 3 hours. So look for another update tonight or tomorrow.

The Count Down Is On

Take a guess. I dare you. Come on guess. What do you think my white blood cell count was today when I had it drawn. Come on, do it for me. Make a sick woman happy! ( OK, I have to use this sickness to get me something. The puppy thing hasn't worked too well. JUST KIDDING people!) OK, I will tell you. Your not going to believe it. I didn't believe it. I think Craig was shocked too when I told him. The kids came with me this time. They didn't have much choice since Craig was gone for the day but I thought it was good for them to see where mom has to go once a week. I think they were surprised at how little of time we were there. I think they were bummed they couldn't watch more of their TV show. The TV was working much better today.

OK, so have I dragged this on long enough? Do you want to know? OK, OK I'll tell you. Sheeesh! Wait for it... wait for it... drum roll please...brrrrrrrrrrrrrrrrrr...25,800. (Yeah! Whistles! Shouts!) Just a reminder what normal is (OK no normal jokes) the range is 4.800-10.800. If I keep this up I will be below normal next week! (Again, no normal jokes) If you remember last week my hemoglobin was below normal and the nurse thought I might need a blood transfusion but the doctor said,"she's young." So I didn't. I assumed this time it would be even lower but it was the same as last week so was still good with that. My platelets down to normal. (Yeah, something is normal)

Your prayers are being answered people. Do you see that?! Do you see how powerful prayer is! You don't have to lay your hands on someone. You don't have to visit with them. You don't even have talk with them. Just pray! Don't get me wrong. Those other things are wonderful and needed too in every way. The cards, the emails, the talks have all been a wonderful support but where would I be without your petitions to God for my health? It says it over and over in the bible: "How gracious he will be when you cry for help! As soon as he hears, he will answer you." Isaiah 30:19. Or how about, "Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective" James 5:16 Prayers are Powerful and Effective. AMEN!! I am living proof. Keep praying. Make it a daily habit. Not only for me but for your families, your co-workers, friends, local rescue people and even the president of the United States. See a car stalled on the side of the road or an accident. Say a prayer. Hear of someone on the radio or news that is going through a hard time. Pray for them. If a car cuts you off and seems to be in a hurry, pray for them. You don't know what they may be going through. We all need prayer. I truly challenge you to get on a daily routine of praying. Do it before you get out of bed in the morning. Do it on your way to work. It is not just a meal time and bed time thing. God asks us to be in conversation with him at all times. Just talk with him. You will find you will be blessed in doing so.

Futures So Bright I Gotta Wear Shades

January 19, 2009 I went in for an annual eye exam. I have been doing this basically since the 6th grade. That is when I started wearing glasses. I received my first pair of contacts my sophomore year of high school at Washington Sr High in Sioux Falls, SD. Now my high school isn't a high school any more it is called the Washington Pavilion but I digress.

Nathan, my 11 year old son, came with me. He had never seen the eye doctor before. The nurse asked if he had ever had his eye's examined and we said only what they do at school. She tested his eyes with the prescription machine, I believe is what it is, and the lucky dog has perfect eye sight. Ok, I am happy for him. Glasses can be a pain especially if you are involved in sports. I digress again.

Anyway, everything was looking good for me. My eye's hadn't changed enough to warrant a new prescription. (Even though I really like my glasses it would be fun to have another pair.) Before I was done he said he would need to dilate my eye's and take some pictures. Now I had told them of my new diagnosis so they were aware. After the pictures the doctor showed me that I had some hemorrhaging in both of my eyes and that we will need to keep an "eye" on it. He said it is more then likely from my leukemia and that my medicine I am on should help take care of it. I will go back and see him in two months to have more pictures taken again. In the meantime, he said he would send the report off to my doctors. I will need to remember to ask if they have received those when I go in Thursday for my blood draw.

So I was done but everything was so BRIGHT. I hate that dilation stuff.

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."

The Cost of Life

In a conversation yesterday with a friend we discussed the topic of insurance and prescription costs. It is never fun finding $5,000 at the beginning of the year to pay an up front deductible before your benefits kick in. (Jody's prescription would be $230/day) However now that we have met our deductible, the rest of the year "should" be free. (Praise the Lord for that darn expensive insurance)

During the conversation, I quickly turned our direction toward the three choices we had. One, we could find the money and get the needed Gleevec that is the "Miracle" drug as the doctors call it. Two, we could decide it costs too much and opt for the "Old" treatment drugs. Three we could ignore the Doctor's diagnosis and pretend that Jody did not have this thing called CML. Now these last two scenarios really did not leave us any other option. We would be fools to choose a treatment plan that offered a "two year death sentence." And we would be fools to choose to ignore the wisdom of one who is there to care for us. So option one was the only way we could imagine. It really didn't matter what the cost, we were going to give everything to attain the "miracle" we needed.

As a pastor, this quickly translated into a spiritual analogy. Of course we all know that we are sinners and that our sin has gifted us with a death sentence. There are several ways that we can proceed of course.

One, we can seek out the "miracle" cure. This cure for sin as we know is only in the love, grace and sacrifice of Jesus Christ. And by faith in Jesus we gain the "miracle" of life everlasting.

Two, we can try things the "Old" way. We can try to be good enough to get to heaven. We can try to do enough to outweigh the sin in our life. But again scripture tells us that the only way to overcome sin is through Jesus, so I see this option without Jesus as a "short term death sentence" and no real option at all.

Finally, I guess we can ignore our situation all together and believe that there is no such thing as sin, no such thing as eternal life, no such thing as God. But who would do such a crazy thing to risk their life and future by not at least investigating the diagnosis and the hope of a miracle cure.

We chose option #1 and we hope you all will do the same.
In the Love and Grace of God.

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.