Much Love & Itching!

Well, it's been awhile since I have written but this summer has been busy with the move and all but you can hear all that in the "hope to be" Christmas Letter. ( I can dream) Had appointment in Iowa City today. It's a little different driving from this direction. Takes about the same amount of time,maybe 15 minutes more, but it is worth it when you like the doctor and people there, even if it may seem a little extreme. Hence the title "Much Love".

I have mentioned it before the many people you see when you got to Iowa City as far as just getting checked in. There is the check-in ladies, the lab crew that draw your blood, the lady that meets you to take you vitals and ask questions, the lady that comes and asks you about the medication you are on, the Nurse Practitioner/ Dr in training that comes in and checks you over and asks you questions about how you are actually doing and if you have any questions.They do a little exam and then are done. Next Karen comes in who is the trial drug representative. She goes over the blood work, gets you your next 3 months worth of medication and takes what you have left. Sets up appointments and answers any questions or concerns we may have. When she is done or as she is about done then Dr. Gingrich comes in. So a total of 7 people I go through before I am even really seen by Dr Gingrich and there isn't much left to go over but it is still a joy to visit with him and hear what he has to say about what is going on with me. He is truly a wonderful doctor.

Today Karen in going over my blood work tells me that my white count is up and so is my liver enzymes. They are accounting this probably to the prednazone, which I am on for my poison ivy. I say probably because they are sure it accounts for my white count but not totally the liver. The Tasigna/Nilotinib has a tendency to raise your liver levels and this is something they always watch. I will have my blood recheck in a couple weeks here to check and see how they are doing. The normal range is 0-20 and mine was 53. My white counts was up just a little with ranges from 3.7-10.5 and mine was 13.3 so just a little high. My test results from my last visit still weren't down to the zero where they would like for my leukemia. Depending on how my results are this time (it will take up to 3 weeks to get results) if it hasn't gone done then, they will up my dose from 300mg to 400mg.

Ok, now my poison ivy. So three weeks ago coming this Wednesday it was finally cool enough that I was able to concur my weeds in my front flower bed. This is not a very small flower bed and it had many over grown weeds. I never really knew exactly what all was in the flower bed since we moved in but did recognize some hosteas and so just went with keeping those and the rest went. Well, two days later I have a few patches on my forearms that are itching, the next day some on my legs. I go to Doctors here in Johnston for a first time visit and she says poison ivy. Uhgg! At the time it wasn't that bad, with just some spot like I said, on right forearm and a little on my leg. Well after about another day I had more on both legs and both arms. But it was the weekend and knowing it was poison ivy just got some poison ivy wash and cream from Walgreens and used that 3-4 times a day for some relief. By the end of one and a half weeks I now have it on my both arms, legs and chest and creeping up my next. I start to panic now and am sooo uncomfortable! But, it is Labor Day weekend so end up going into Urgent Care. The doctor there was very nice but was concerned about the medication I was on with my leukemia that she suggested a different poison ivy wash which she said would work better. Well, I think it made it worse because I received NO comfort from it. Now it has been two and a half week and there is now some on my back too. Back to the doctors I go where on Friday of last week I finally am able to get on Prednazone. I am finally starting to get some relief. The cooler the weather the better off I am. I have given into the itches so will probably have some scars but hey. I NEVER thought about having poison ivy in my own flower beds. I hadn't really ever heard of it before so I wasn't even looking for it. Now that I look back we have found a couple small plants. Now I just have to get rid of it. So that is my story and I'm sticking to it. (hahha)

Things are going well here in Johnston, Iowa. The kids are getting involved in school. Making friends is no problem for Hanna and it will come for Nathan. He involved in French club, Jazz Band, and Soccer so some way or another he will make some friends. Craig is staying busy at the New Hope Church with outreach ministry stuff and I am busy here at home with house stuff. I have applied for several jobs but have honestly enjoyed the days home alone but miss the work too.

Some of you may have seen the special on ABC, NBC, and CBS the other night called, Stand up to Cancer. First off, I think it was amazing that all three networks got together to do this second I encourage everyone to donate to this wonderful cause. All the proceeds go to new drug trials and cancer research. We were told today from Dr Gingrich that this test drug I am on, Tasigna/Nilotinib is now on the market and has basically replaced the Gleevex because it is working so well. He also told us that new studies they are doing that he is excited about is that people who have been on the Tasigna and have gone into remission, after a period of time they were taken off of it and 50% of the people started showing signs of leukemia and went back on the Tasigna with still great and fast response. The other 50% who went off it and were able to maintain the normal numbers after 6 months have been able to stay off of it so far. These are encouraging thoughts and words. What once there was no cure for now has a drug that can put you in remission with the possiblities of eventually getting off it too. This is great news but they wouldn't be able to come up with it with out the funding. Go to www.standup2cancer.org and make a donation and help some a life. You never know who might be saving.

Battle of the Buldge

I wasn’t sure I was going to write about this or not but decided I would share. You never know when it might help someone else going through the same thing. Well, when I titled this Battle of the Buldge I truly mean it. This is something I have actually been dealing with the past almost 2 years. It is something I went in to have checked on my physical 2008 when I was diagnosed with my CML but didn’t do anything with. So, obviously it wasn’t bothering me to much but more of a concern.

After my physical this year my physician advised me that I see an OBGYN and have it checked. So that is what I did. First let me say Dr. Kacci (pronounced kacky) has the most beautiful eyes I have ever seen! Sorry honey. I had a hard time catching everything he had to say. It didn’t take much of an examination for him to know that I had a prolapsed bladder and uterus. What does this mean? Well, basically that my bladder and uterus are falling and causing a buldge vaginally. What goes along with this? For me it means mostly constipation and occasional leakage of urine when I sneeze or cough. How does this come about? The main cause is from injury during childbirth, especially if the woman has had many babies or large babies (more than 9 pounds) I definitely don’t have many babies but my first born was a large baby of 9 pounds 1 ounce and I had a lot of pushing during delivery. Now let me say right now, DO NOT TALK TO MY SON AND BLAME HIM FOR ANY OF THIS! He is very sensitive and would feel incredibly bad!!!!

This last Monday I had the pleasure of having an urodynamics test done. This measures pressure and volume relationships in the bladder. Let’s just say that it is really hard to pee when you aren’t sitting on the toilet and someone is watching!!! And I had to pee!!!! What you have to do is go in with a full bladder and then sit in this birthing type chair and pee into a funnel which measures your pee and I believe pressure. Then they put a small catheter in you and fill you up and have you also hooked up to a few different wires till you say you can’t hold any more and have you cough a few times (to see if you leak) and then pee again. None of this was painful but annoying that I couldn’t pee without being moved onto a commode both times. Thankfully I had a wonderful nurse who was a great talker and had actually been through this whole process herself.

June 2^nd I am scheduled to have a vaginal hysterectomy and suture up my bladder to hold it in place (uterosacral ligament fixation, A & P repair, perineorrhaphy) along with, a Cystoscopy (looking into the bladder with a scope) ….Craig and I have some questions yet before all of this so have an appointment to meet with Dr Kacci May 25^th to get more information. Craig is concerned about a lot of things like why the total hysterectomy and what about recovery time. Remember, we are moving so are packing and unpacking which will be strenuous. We are looking at moving around the 15^th of June. We also have our United Methodist Annual Conference June 5-8 which I was suppose to go also, but by the sounds of my recovery I will not be up to going even if all we do there is sit.

So that is where we are at right now health wise. I am starting to wonder what is going on. Ok, so I turn 40 July 2 and I am telling you. From age 30-40 it hasn’t been all that great health wise with first my panic attacks and depression to my Leukemia to now this? So I am vowing that 40-50 will be much better. You can read more about the bladder and uterus prolapsed by going to these websites for more info if you would like. Again, I remind you to NOT give my son a hard time about this. He may be embarrassed or sensitive about the whole thing.

http://my.clevelandclinic.org/disorders/uterine_prolapse/hic_uterine_prolapse.aspx

http://www.emedicinehealth.com/prolapsed_bladder/article_em.htm

As far as the move, we are closing on the house May 26^th and are very excited about that. We are all taking the day off and signing the papers, getting the kids registered at schools and then Craig also has a meeting at the New Hope church that night with several different committees to talk about his responsibilities so everyone is on the same page. The leader of new church start developments, Scott Hibben, will be there also to facilitate the meeting.

Craig and I went to “Boot Camp” last week May 10-13 which was very interesting and informative. Not only Craig and I were there but the pastor of New Hope church, Neil Cross (our mother church) and one of the lay leaders, Eldon, was there and so we were all able to hear and work together on a plan for the next 15 months. There is a lot to do in regards to starting a new church but throughout the week I was reassured more and more that this is what Craig is called to do.

You know hind-sight is a wonderful thing and I can look back now and see how God has been preparing Craig for this endeavor. First of all his upbringing was wonderfully Christ based and he was very active starting with his mission trips to Mexico, getting him to work with others to bring people to Christ who lived in difficult situations. Second, there was his Tent Makers training he had when he first got into Youth Ministry. I remember him talking about one even they had to do which was going to a mall and talking with complete strangers and basically asking them if the knew Jesus as their personal Lord and Savior and how uncomfortable that was for him but yet how exhilarating that was. Then there was the Prayer Walking he has done here around the Geneseo Community, knocking on everyone’s doors just to tell them that our church was praying for them. Every step has been to prepare him for this next big step of reaching out to complete strangers and inviting them to join him in starting a new church. Heck, even his BA in Music Theater has helped him as well as his time as a manager at a sporting good store in Colorado. I am so proud of how he has willing stepped forward and is trusting Jesus in this new adventure of his life.

Well, we hope and pray all is well with each and every one of you. Remember to step out and trust God in all you do. Include him from the start in your plans because he may have bigger and better plans for you. Trust Him. He wont lead you astray.

I Had A Long Take

Do you know the song from Alvin and the Chipmunks, "Had a Bad Day?" Well, I cant say it was a bad day really or a good day but it was a LONG day. Craig and I had to be in Iowa City at 9:00 for my first set of test. First I had three EKG"s done each 5 minutes apart. That all went pretty smoothly. Got in pretty fast, she got me hooked up and ran the first of the three and then drew my several vials of blood then the other two tests. Was done there about 9:40 and my next appointment wasn't until 11:45 but thought we might as well go up there and see if we could get in sooner. The receptionist gave me a pager and we went back downstairs to get a couple lattes. As we were ordering the pager went off so back up we went. There I had the echo cardiogram done. Craig thought that was pretty cool to be able to see my heart and it pumping. To see the Left and right ventricles and atrium, the aorta, even having it colored red and blue and see the blood going in and out and really hear it. I asked about getting it on DVD and she said it was possible but then she didn't give us one. Guess I was specific enough. Thought it would be neat for not only my kids to see but the 4th and 5th graders at school are learning about the heart. Maybe if I have another one in one of my next visits I will ask again.

So not it is like 10:50 and figure my next appointment isn't until 1:00 so could catch and early lunch and not have to worry about hurrying. We went to a new place to us called the Spartin Gyro. It was really good, just a little place but you get A LOT of meat for your money. There was so much meat in our gyros that we took some of it out and we figure we have enough to make two gyros tomorrow for lunch.

Then back to the hospital early and we actually got in pretty fast too being my appointment wasn't till 1:00. We didn't see Dr Ginrich this time. Just Karen and Karen. Karen the PA came in and talked to us and asked what we used the last time I had my bone marrow done for pain. Was it just the epidural or a morphine pill? Craig thought just the epidural but I was sure I had taken a pill and after a while Craig thought I had too but granted neither of us was positive. It was all such a blur. So I was given a morphine pill and then had to wait 30 minutes. Karen came in and she proceeded to numb my hip. THAT HURT! She then went right in with what Craig calls the "ice pick." At first it didn't hurt so much. She kept saying I had a thick bone. That meant she had to "pick" a little harder. I could feel when she did aspiration which she had a hard time getting enough marrow because of my think bones but after three times she thought had enough and I had definitely had enough! I know the last time when I had the bone marrow biopsy I said I would do that over going to the dentist. Well, not so sure would be true for this time.

We had to wait for Karen to come back to talk to us so I was put in a wheelchair and wheeled out to the waiting room. I was feeling pretty woozy, like if I moved my head to fast I would get dizzy. After our chat Craig wheeled my back to the where I had my EKG at the beginning of the day for another round. By the time that was done I didn't need the wheelchair anymore and was feeling pretty good. I was wiped out and ready to go home. I thought I would sleep in the car but I just couldn't.

I should be hearing back from Karen about my test results and if everything looks good I will go back on Monday to start the drug.

Catch Up and our BIG NEWS

Where you thinking I feel off the face of the earth? Nope, I’m still here but not really much news. After my appointment in January and my results being 0.00058 the doctor decided that since we were close that we would give my Gleevec 8 more weeks and then have my BCR drawn again. Well, the eight weeks was last Monday, March1. I really like going to Iowa City but when you know all you are going to really have done is your blood drawn it is hard to be patient while you first have your blood drawn, then a nurse takes you and checks your weight, B/P and Temp. Then you are taken back to a room where you wait and the Test Drug rep, Karen, comes in for a short talk. Basically saying we will wait the results and go from there. Then the PA, another Karen, comes in and asks you the same questions, “How are you? Feeling tired, any swelling” Then checks your spleen and your legs for swelling and then leaves and you sit there for Doctor Gingrich to come in and really not have anything to say. If you ask me we could at least skip the Doctor visit and just talk with the PA. If it is a follow up visit why not just skip the doctor? Anyway, I really like Dr Gingrich but don’t HAVE to see him everytime.

Ok, so today I got a call from Karen the Test Drug Rep saying that my results from the BCR were exactly the same as 8 weeks ago. That isn’t good really. Not bad but not good either. We really should have met my goal and been in remission about 6 months ago. So, obviously my Gleevec is not going to get me to that final point. I will now be going to Iowa City the next three Mondays for appoints to get started on the test drug. I will stay on the Gleevec for about two more weeks which works out good I think with what I have left. Then I will be off it for 3-5 days before starting the new drug. I am excited about starting this new drug. I hope that it won’t upset my stomach like the Gleevec and I don’t think it will. And like I said before, being on the test trail I will get close attention. Not that I am worried about anything but it will be a nice precaution. But the big bonus is that Karen the Test Drug Rep is really good about keeping in touch with me. I LOVE that. We all know how well Dr Sanghas office was at getting me test results and how annoying that was.

We brought the kids along this time. We told them that we needed a family day since we had been so busy with going to Jerusalem and Craig being in the play Curious Savage. We just hadn’t had much time together. At least that is what we told them. Which to a degree was true but we did have other alternative. On our drive to Iowa City we asked the kids why they thought we brought them along. Hanna truly did think it was a “family day” but Nathan had a feeling it was something else. He was concerned that it had something to do with mom and her doctor’s appointment. That things had changed and we had news in regards to that. We reassured him that that was not the case. Then we played 20 questions. First they figured out the area we would be headed to after my appointment, which they narrowed down to the Des Moines area. Then they had to figure out why. They both had no clue. I told Nathan this was something he had been talking this year and actually just last Friday. That really puzzled him. Eventually, it got to this. We will be moving. Yep, the time has come. The kids reacted the way we expected. Hanna cried and Nathan was giddy. They had the rest of the day to ask questions.

We ate lunch at Old Chicago’s, then went to my appointment. We actually got right in and got through the whole visit pretty quick. Got in the car to head to Urbandale and about 15 minutes out I got a call on my phone. It was Karen saying that I had needed to get more blood drawn because they hadn’t taken the right stuff, could I come and have that done. It wasn’t her fault. She had told me at the beginning of my appointment but we had forgotten in our excitement. So back we went. Now we were going to be late for our Urbandale appointment. Ended up we were only 10 minutes late.

The kids got to meet some of the church people and the church. They love the church. The name is New Hope Methodist. Of course it is somewhat bigger then where we are now. There is a rec. room with basketball and volleyball available. They have three services, two traditional and one contemporary with a Praise Band. Craig will be working with the senior pastor and preaching once a month ,but mostly working on getting out into the community and building a core group of people for this new church start.

We weren’t able to drive around Johnston because by the time we were done at the church it was 7:30 and we had an on hour and half to drive home yet. The kids had to not tell anyone for a whole week. They did really well. We would talk about it at night and on the way into school and then they would have to keep it at secret. Sunday, the announcement was made in church. Boy, was that a hard day!! Tears were shed. Thankfully the announcement was at the end of church so I was able to play for the whole service with my eyes fairly dry. They are sad to see us go but understand I think that this is what we are meant to do.

So that is our BIG NEWS.

As I was writing this I see that Karen has emailed me with my appointment information. On Monday I will have to be in Iowa City at 9:00 for blood draw and a couple ECG’s. Then 11:45 I will have an echocardiogram. At 1:00 will be my bone marrow biopsy. Hope they do as well as Dr Sangha did a year ago. I will have high expectations. Of Course a year ago I was in shock too so was kind of numbed by all that. I will continue to take my Gleevec til Wednesday, March24. If everything looks good from these test then I will return the following Monday for more bloods draws, ECG’s and take the first dose of the Tasigna. Then repeat blood and ECG’s. Return again April 5^th for Blood draws and ECG’s. They don’t expect there to be heart troubles, it is all just precaution and since I am on this as a test I will be watched carefully.

Ok, now you are all up to date and know what I know pretty much. Aren’t you lucky.Keep us in your prayers not only as I start this new drug but as we start a new adventure in our lives. We are excited but a little leery too as to not sure what to expect. We truly believe that this is what God wants us to do and will trust in Him to guide us through this adventure.

What a Day!

Ok, so it was a crazy day! First I get a text on my phone that the kids have a two hour delay from school, then Craig had jury duty in Toledo at 8:30 and my appointment was to check in at 12:45. Plus, to top it off there was ice. Well, the kids got taken care of and off on the bus while we set off for Toledo. The roads actually weren't as bad as we thought they were going to be and we got to the court house early enough to stop and get a cappuccino. Craig and I had decided that if he wasn't out by 10:30 I would have to go to my appointment on my own. So while Craig was having his fun (haha)I went shopping. Now in Toledo there isn't many choices so it was Pamida. Hey, it works. I did find a couple gifts and by the time I left the snow was a falling and big time! Back to the court house. I sat there in the waiting room watching the snow coming down even harder praying the whole time that God would let Craig get out of jury duty so I could have his support. Unbeknownest to me Craig was reading a book about ....and praying also about getting out of jury duty to be where he thought he should be which was with me. (what a sweetie) At 10:45 I head to the car knowing I had to go to my appointment on my own and the sun actually starts coming out and it stops snowing. Writing this I know now that was a sign that everything was going to work out. So, I figure," I am woman, hear me roar!" I can go on my own. I can do this! So off I went. About 8 minutes out my phone rings and it is Craig. He is done. Hallelujah! So I turned around and went back to get him. God is so good. I really didn't want to go on my own.

Roads were kind of Yucky on the way to Iowa City until we got closer to Cedar Rapids and four lanes, then they were quite good. We even got to my appointment by 12:50 so only 5 minutes late. Just another way God was watching out. Then I went and got checked in and was told I could go right back to get my blood drawn (which by the way actually hurt this time and felt like I had a rock in my arm afterwards), and when that was done a nurse was waiting for me in the hall to get my weight, blood pressure and temp. I was then taken right back to a room. (Ok, so if you have followed all of that you will know that I have now been in three different rooms and Craig wonders why I cant ever find my way out of the last room to the receptionist.) What a change from the last time I was there and waited over an hour and half.

First Karen, who is our patient coordinator in regards to the Tasigna test trial, came in and asked if we had any questions. She talked about what mainly would happen if and when I got on Tasigna next month and if I had enough Gleevec to get me through till then. Let me just say now that she is a great lady. She has stayed in contact with us since our last visit. One of the reason I would like to go on this test trial is because she is very good about keeping touch. We all know by now how that is important to me. I have received several emails from her this past month with questions and answers. She has been great.

A few minutes after she left the PA came in. She was in a silly mood today. She asked the usual questions and then when she was asking about medications if any had changed she asked about birth control. This is something that was mentioned a year ago but never pursued. Partly our fault. We told her this has never been something we had to be on . Getting pregnant was not the easiest thing for me. She just got the funniest look on her face and things just got silly then. She told us about when she was 40 and got pregnant and how your never too old and on and on. Then she told me to jump up on the exam table and she started listening to my heart. She replied with, "well it's about 140 so it must be a girl." (haha) and then she checked my legs for swelling (which does happen being on Gleevec) and I told her I didn't have any and she looked up and said, "yep there was." pertaining to being pregnant and having swelling. (haha) The whole visit was just silly like that. It was a lot of fun. When she left she said she would see us in a month for the ultra sound and the view of our twins. (haha)

Next, Dr Gingrich came in and he basically said that he would like me to be on the Tasigna the middle of January whether it is on the trial study or not. The only reason it wouldn't be in the trial study would be if my number went down to all zeros and he couldn't convince the drug rep company that it would be a good thing for me. He just thinks that with the increase recently of my numbers and not knowing for sure what the cause was that it would just be a good idea for me to me on the Tasigna. So my next appointment is January 11 and I will have more than the usually blood test along with an EKG and probably a bone marrow biopsy. All wonderful things too look forward too.

With the start of this new drug things will be a little different with our insurance deductible and when we will meet that. We might not have to meet it very first thing in January like last year which is good but more than likely with in a few months.

So we actually got out of there by 2:30. Only an hour basically in there this time WOW! Yet another God thing. So off to lunch we went. Then on our way out of Coralville we missed our turn and ended up passing a Walmart to turn around at and I asked Craig if we could please stop to check and see if they had this game my friend and I had looked for the day before that she wanted for Christmas and everyone was out of them. He didn't really want to but he was a good guy and did and guess what. They had the game. I am telling you it was meant to be. It may all sound silly but yes God even leads us in the right direction to buy the things we need.

We got home safely. Once again on the way I received another text on my phone from the school. (I think I started my day out this way didn't I?) saying that my daughter's Christmas program was canceled yet a second time and that all-after school and evening activities where canceled which meant my son's rescheduled basketball game was once again canceled due to weather. Hanna's program is rescheduled for Thursday. Not a good night for us. Roads were starting to get wind blown and the temperature was dropping. Yet again at 7:26 I received another text saying school would be delayed again another two hours. Looks like it is going to be an interesting school year.

Thank you God for watching out for us today. We don't always see it and realize it but you are there with us in all we do.

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!!

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.

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.