Wednesday, March 17, 2010

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 5th 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.


1 comment:

  1. Wow this was pretty shocking news to us. We trust your walks with God enough to know that He must be calling you to this change-- but we are sad that we may not see as much of you. Were the kids and church as surprised as us-- or has it been in the picture for awhile? When will the move take place? We'll pray for a smooth move and that God will continue to use you in your new place.

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