Tuesday morning after Merrick and I left the Dr.'s office, we both agreed that we felt relieved, hopeful, and peaceful. The emotions we were feeling were on the opposite side of the spectrum compared to our last visit. So we decided to go out and celebrate at one of our favorite places to eat, Hu Hot. (Oh so yummy!)
We were able to visit with just the Dr. for over a half hour. We laid everything out on the table and came with a list of questions and concerns for him that we felt NEEDED to be addressed. We were so thankful he thoroughly explained everything to us and took the time to answer all of our questions.
My white blood cell count jumped up to 13,000. Last week it was at 4,000 so right now it is slightly over the normal range. However, my hemoglobin, red blood cell count, and platlet count is all back within normal range: PRAISE GOD! The Dr. was very pleased with my labs this week. He said this is what "normal" looks like. But I asked him how I can be normal if one week my count is 4,000 and the next week it is 13,000. He explained he doesn't look at it that way. He is encouraged by that because it shows him my body is responding to treatment exactly how it should. When I am on the medication, my white count goes down and when I'm off of it my white count spikes back up. I guess it was a new way of looking at things. He also checked my spleen and was unable to feel it so that means it is back in its place.
He also explained new medication. It is called Sprycel. It too is a chemo drug. This drug is designed to only attack the chromozone that is going haywire and producing an excess of white blood cells. Because this drug is so finetoothed, the side effects should be less severe than my last medication. There still is a long unpleasant list of side effects, but my Dr. really has encouraged me that most people on this drug can tolerate them.
With all of that positivity, Merrick and I thought for a moment we were on cloud nine. Until the next part of the visit, which quickly brought us back to the harsh reality of things. Again, since this drug is so finetoothed and the engineering of it is beyond mindboggling, it comes with an extremely high price tag. So after we visited with the Dr. we visited with the patient advocate. She has been the angel behind the scenes searching for foundations to help us with at least the copay of the drug. She has been submitting forms and making phone calls in order to reach some glimmer of hope. Although she has not found a foundation yet, she was honest that it was not going to be easy because of the price tag on this drug. She assured us that she was not going to quit on us but she also wanted us to be fully aware of what we are dealing with and how the future might pan out when it comes to the cost of this drug. So that my friends is the monsterous, ugly troll that is standing in Merrick and I's path. We are desperately trying to stay calm and know that God has control of the situation but what is left of our patience is about as think as a sheet of paper!
**Prayer Requests for this week:**
- I haven't started the new drug yet. It is sitting on our kitchen table and I ignore it every time I walk by. But I know that my life depends on it, so I will start taking it....pretty soon. I'm just not excited to start feeling like crap again. So please pray that the side effects are minimal and my body will tolerate this new drug.
- Please pray for wisdom. For the Dr., for the patient advocate that is diligently working on our case, and for us. Because of the cost of this drug, Merrick and I are faced with some major financial decisions that most people our age wouldn't even think about. We don't want to do anything hasty, but we need to make some decisions that are not going to be fun or easy!
- Please pray that everything will get worked out for the cost of this drug. That there is a foundationout there that would be able to fund our copays at least.
- Please pray for patience. It feels like that is all we can do is sit and wait....at times the silence is deafening and makes us on the verge of going crazy. We have to keep our composer so we don't start to turn on each other!
Thank you so much for your prayers, love, cards, meals, and donations. We are forever grateful for the acts of kindness that have been brought upon us. What an honor and tremendous blessing!
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