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.
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