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.

Being a Good Girl

Did you know that being a good girl can get you in trouble? Well, it happen to me today. Craig and I got on the road headed to Iowa City for my third appointment in a row when I thought, "I need to take my pills." So like a good girl I took them. About 15 minutes later I was getting a call on my cell phone but I was having trouble getting it out of my pocket therefore I missed the call. I tried calling it back and found that it was from the hospital in Iowa City but I couldn't get the person who called beings they were on an extension. I assumed it was Karen calling to talk to me. About 30 minutes from Iowa City Craig says, " Were you suppose to take your pills today before your testing?" Ah Crud! That was it.

When we got to the hospital and the nurse called me back I told I had taken my pills and she would have to call Karen to find out what she wanted to do. I lucked out. I it was fine. See I was suppose to not take my pills so they could do three EKG's and then take my pills, wait two hours and do three more EKG's. Oops. Karen said we will just do the blood draw and the post EKG's, not a problem. I told her I was just trying to be a good girl and get my pills taken. Actually, it wasn't even her that called earlier on my phone. I still don"t know who it was. God I guess. He was a little late though.

I am still working on a schedule to get those darn things taken. Fasting two hours before taking the pills and one hour after taking them, the night times have been my struggle. We eat so late especially now with kids in soccer till 6:30 at night and meetings starting at 6:30 or 7:00. I take my pills at like 9:00 then I cant have a snack before going to bed cause 10 is just too late and by then I am going to bed. The strange thing is, that I didn't really have snacks before going to bed anyways but it is just knowing that I can't if it is going to be that late. It should be a good thing. I just wont eat breakfast or supper, I need to loose weight for the summer anyway. (Just kidding mom. I wont really do that!)

So it was a shorter day then we expected which was nice. I had asked the nurse if there was a Good Will store close by and she told me about the one close to Coralville Mall. The back of the van had 8 bags of stuff so we dropped them off. Actually, we dropped them off and I picked up one. Meaning, I ended up buying some clothes. Then we had a coupon for Red Lobster and ate lunch and headed home.

On the way home it started raining and there was some lightning too so called the school when we got close and found out that Hanna's soccer was canceled so told them to ride the bus home. It was nice to be home an hour before the kids got home. I got a few things done.

Now I don't have to go back to Iowa City till April 26th to see Dr Gingrich. Things have been going well with this drug so far. No nausea after taking the pills and my puffy eyes aren't nearly as bad either. One thing that has changed...actually two things that are kind of embarrassing. First, my bowels... well, let's just say I could go to the bathroom about 30 minutes after every meal on my Gleevec and I really didn't mind that. But this last week that has changed quite a bit. I do believe this drug has a tendency to cause constipation so that could be a problem. Second, (sorry guys there is no nice way to say this) my boobs have been more sore. I did mention that to Karen this morning and that was a new one to her. It is just mild I guess but I will be...uhmm... monitoring this until my appointment with Gingrich. It could just be the change and that will all settle as time goes on. Remember, shortly after starting Gleevec my periods were much heavier so who know. Ok, embarrassing stuff done.

The big basketball game is on and Nathan wants me to watch it with him. I don't really care who wins since the UNI Panthers didn't make it but it is time with my son.
I will keep you posted if things change. Until next appoint. So long.


(Picture of me as "Good Girl")
(Ok, Maybe not?)

Nilotinib

Nilotinib

Pronunciation: (nye-LOE-ti-nib)
Class: Protein tyrosine kinase inhibitor
Trade Names:
Tasigna

As of Monday, March 29th I started the new test drug Nilotinib. First I had the usual done of weight check, temp and blood drawn. Shortly after that I was called back to a hospital like room where several EKG's were done, and I mean several. (We had a few technical difficulties.) So what was suppose to be 3 EKG's turned out to be 5 to start out with. At least I was laying down and resting. My results looked pretty good. Little questionable on one but like Karen says, she is not a doctor and doesn't read them for a profession so she went to have Doctor Gingrich double check them. About 5 minutes later she called down to the nurse and gave the OK. That's when I took my three tablets. One 200mg and two 50mg. I was to come back two hours later which was 12:50. Now I had been fasting since about 6:30p.m. the night before. I couldn't believe how much I missed my cappuccino in the morning. I still couldn't eat till an hour after taking the pills so we walked around and checked out the gift shop then found a place to sit and we both read till it was time to head back. During this time however my husband decided to indulge himself with a nice flavorful latte. "How Rude!"

Back we went at 12:50 where I was taken back to the room again for three (actually four) more EKG's. All looked good and i was feeling good too so was free to go. That was after I signed papers for reimbursement for millage and lunch. That will be a nice part about the study. They don't cover all the millage but every bit helps.

I go back again next Monday for the same routine. If things are still looking good I wont be back again till April 26th.

Some of the things I am to do while on this Nilotinib are: fast 2 hours before taking pills and 1 hour after taking them. Water only during fasting. During study I should not consume Seville oranges or juice, grapefruit, grapefruit juices or supplements, Star fruit or juices, or Pomegranate or juices. I also need to notify Karen if I have a sudden weight gain of 5 pounds or more. I am hoping for a 5 pound weight loss would sounds good.

The reason why all the EKG's is just precautionary. As Karen says, " I know this is a lot of heart testing but we don't expect to see any problems. We just are careful when starting on the drug as there have been a few cases of heart problems with the drug in the past."

One other prayer concern we have. We have found a house we all really like and put a bid on it last Monday. However, the previous owners owe more than we are offering. That means that the bank gets involved and it is called a "short" sale. Craig talked to the Realtor again Monday and the owners where suppose to be presenting the bid to the bank yesterday. If I understand things right the bank will have to get together to decide if they will take our offer, counter it, or just forget it all together. We really like what this house has to offer and would really like to get it. So please pray that if this be God's will this will happen sooner rather then later and if not to let us know sooner then later so we can find another option. (If we can act before April 30 we can get the new home owners $8,000 tax credit)

Take time this Easter to spend it with the people around you. Isn't that what the disciples did? They were together comforting each other after what had happened days before. When the women came in proclaiming that the heavy rock had been rolled away and Jesus was no longer in the tomb there was much doubt and disbelief. It wasn't only Thomas that was disbelieving. In Matthew 24:11 it says that they did not believe the women. Even Peter had to go to the tomb to see for himself. Jesus himself even asked the disciple "why do doubts rise in your minds?" In Luke 20:29 Jesus says, "Because you have seen me you have believed; but blessed are those who have not seen and yet have believed." Go out this Easter believing and proclaiming the good news that Jesus is not dead but lives with the Father and the Holy Spirit. Death could not hold Him and because of Jesus, death cannot hold us either. Praise God!

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.

8 weeks

Have you all been wondering about me? I'm sorry I am so terrible at this. I have tried a couple times to write something around the beginning of the year but it just wasn't coming out right. I felt I should say something but yet didn't know what to say with it having been a year since my diagnosis. What do you say? A year ago I was told I had leukemia and when you first hear those words you immediately think the worst. Thank God for medical progress. As all the doctors have said, ten years ago the word leukemia was a word of no hope, but now with the advances in medicine that is no longer the truth . Again, Praise God. I have been blessed and had a good year with no sickness, tiredness or any other troubles and have always felt good.

The last time I wrote was over a month ago and I have been to Iowa City one more time. My appointment was January 11th. The weather was much better this time and no jury duty. I thought I was going to have a lot done on me this time but that wasn't the case. We have learned to get there just a little earlier than when the appointment for seeing the doctor is and not when your blood draw is. They schedule the two about a half an hour apart from each other so if you wait and get there for your appointment with the doctor you just go right in for your blood draw and when you get done with that the nurse is waiting in the hall for you to get your vitals and stuff. Then she takes you right back to the room to see the doctor. Much faster this way then waiting a half hour in the lounge or more.

We had a different PA this time. Her name was Karen. Now I had a PA named Karen and the Test Drug Rep whose name is Karen. The PA checked me out and asked all the routine questions, "how is the swelling? Feeling tired? Still taking the Gleevec 800mg?" and then checked my spleen and listens to my breathing and heart. Karen the Drug rep came in and said that the lab didn't take all the right tests and so I would have to go and have a second draw. Then Dr Gingrich comes in shortly after and talks about how they will be sending my blood to a different lab this time. This lab looks at my blood much more closely. He said they get all gowned up like you would see on TV. Head, face, hands body feet, the whole works covered. They don't want any chance of their DNA getting into yours and they test your blood like three times looking at it much closer giving a truer reading. If I was to go back to school I think it would have to be to do something like this. I just think it sounds so cool. Anyway, he said we would await those results and then more than likely on my next visit start the whole kit and caboodle regimen of tests. So this visit ended up being shorter then I had planned which is always nice.

The plan from Karen the Drug Representative was that I would more than likely be seen again in two weeks. All of them have always talked as if more than likely I would be put on this new drug sometime in February. Karen emailed me my test results Wednesday and now we are going to wait 8 weeks and have the blood drawn again to see if there is any changes. Here is what she wrote to me;

"Your study test came back about as we expected – with just a little disease. They read it as 0.22%, and the ‘major molecular response’ that we like to see at one year of treatment should be 0.1%. Pretty close! Dr. Gingrich suggests we wait 8 weeks, then recheck with the study lab. He thinks you’ve plateaued and may not get more response from Gleevec, but would like to give it just a little longer."

Will I have all the tests done then? No, probably not. We will wait for those results, which this last time took about a week and a half and then go from there. The problem with this is the deductible will have to be met now. We had it planned out that I got my refills the end of December to get me through January with the thought I would be starting the new drug in February. We knew eventually we would end up meeting the deducible through doctor visits being on the test drug but now it will come all at once with one refill. At least we are mentally prepared this time. We know what is coming. Still a big bite to chew.

Now you know what I know. (Sorry about that. hahaha)

Please pray for our safe journey and for the kids and grandparents a joyous time together. I am sure we will share our trip with all of you when we get back.

Ok, the kids and dad are around me and bugging the heck out of me so am going to end this. Love to you all and as always, thank you for your prayers and support.

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.

Going Down!

Going Down?!

Ok, if you aren’t confused yet you may be after reading this. First, guess what I finally received last week in my email. I got a response from Dr Gingrich finally about my test results. Here are his exact words he sent me: “Your mutation testing came back negative – no T315i or other detectable mutation. The PCR test result was 0.00156 [this number is not to be compared numerically with your prior numbers] which roughly speaking equals 156 copies of the Philadelphia chromosome per 100,000 copies of a normal ‘reporter’ gene. In other words Gleevec has produced >100-fold drop in the Philadelphia which is not bad but is also not zero, which is our goal. There are other mutations that can’t currently be measured that could cause the Gleevec to produce an incomplete response.

I would suggest our plan be to continue with Gleevec, recheck the PCR in 2 months from your last visit and if still elevated, consider moving over to the Tasigna clinical trial.

Ok, so if you don’t understand that, which at first I didn’t catch either, my numbers in my PCR are actually back down. (This is a good thing, I know very confusing, up and down which is good right?) This means it seems that my Gleevec is back to working. So why was it up before? Don’t know right know. Like Gingrich said, there are other mutations that can’t currently be measured that could cause the Gleevec to produce an incomplete response.

Now last Friday I went and saw Dr Sangha and he basically said that he wasn’t sure if I would be able to be on the test drug if it seemed my Gleevec was working. So where does that leave me? Stuck in an elevator listening to music. Basically waiting till I see Dr Gingrich on December 14^th and then probably waiting after that too until I receive my test results that we will take when I am there.

Is staying on the Gleevec a good thing or would it be better to go to the trial drug Tasigna? Well, If I were to go on the trial drug most everything would be paid for beings it is a “trial”. They would pay for my visits, my test, and my drug. Now if the Gleevec is working that is great and yes it would probably be good if I just stayed on that but that means having a big deductible to meet the first of January. So as usual it is all up to God and what he wants. I know that and always have. I just don’t always like waiting and wondering.

I am finding that I am getting a little more emotional as the holidays come. I keep thinking back to that dreaded phone call almost a year ago and how things could have been different for me right now. I have a lot to be thankful for this Thanksgiving. I can’t say that I have changed my ways like I probably should but I am definitely more thankful for what I do have, especially family. Remember that when you are with family this Thanksgiving, you never know what tomorrow holds. Be sure to let those around you know how much you love and appreciate them.