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.

Phase One

Went to the Dr Sangha's on my own Thursday for my visit. It has been a month since I have been on my Gleevec. As you know my numbers have gone down drastically. Well, they continue too. My white count was 4,200. I did ask how low my count could go and he said without any hesitation 1,000 some. I am officially in the first stage of remission. (HIP HIP HOORAY!!) I will continue to go in once a week for my blood check and in two weeks I will have the FISH test (that I mentioned in previous updates) to see how close I am to being in the 2nd stage. I asked him when I may be in complete remission and he thought possibly in 3 months. HOLY COW!! Now normal remission has been about 12-18 months. We account my fast improvement on the high dose of Gleevec, Dr Sangha started me out on then maybe usual, and because of all your prayers. I will remain on the high dosage of my Gleevec until I am in complete remission. I however no longer have to take my Allopurinol. (Yeah! One less pill.)

I am still feeling quite good. My night sweats haven't been so bad, and my leg cramps have decresed, I haven't been as cold but still am wearing my three layers. Plus, it helps that the temperature outside is finally above freezing. As Craig mentioned in the last blog, it's hard not to feel quilty for feeling so good and things going so well. The advancements they have made with Leukemia is just amazing. Thank God for the Doctors and Scientist and their knowledge to figure all this stuff out.

Continue to pray for my advancements and for the doctors and scientists who work on finding a cure for this. I pray that all of you that may yourself be struggling with some form of cancer or have a loved one with cancer not to give up hope. If you need someone to pray for you let me know and Craig and I would love to add you to our list. Don't keep it from people. Talk about it and have others pray for you. God can and does work miracles. Don't give up HOPE.

Before I wrap this up I would like to update you on my brother Todd. His past surgery did not go quite as well as we would have liked. They were not able to help him out at the time due to too much infection in the bone and tissue. He will have to have two more operations in the near future which he is not looking forward to. I ask you please keep him in your prayers.

The Count Down Is On

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

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

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