To begin, it appears I’m doing well. My blood work is doing okay. Some virus has reactivated in my body. I can’t remember the name, but it’s a 3 letter acronym that starts with a C. Apparently, no need to worry; 80% of people have it. We get exposed when a child, and the doctor just changed a pill. I’m to stop taking one and start another for 3 weeks and that should hopefully combat it. My liver and kidney functions are better. My scope procedure results show that I definitely have graft vs. host disease and although this sounds bad, it’s a good thing. I’m supposed to get it to a point so that my body is adapting to my new immune system, but we do want it to go away. It’s something I’ll be fighting for years to come because GVH (as it’s known) can flare up really at any time – years down the line, but I just have to be treated and I should be okay. I need to be aware and can’t ignore anything now when it comes to my body. The doctor says I’m doing fine, especially since my appetite is good and my bowels (amazingly) are regular and normal. I can’t believe I’m better now then when I was preggo. We were surprised that she had some of my bone marrow results. No leukemia! We’re still waiting for the long and detailed interpretation/results. What she showed us was a piece of paper with all zeros meaning the results did not show any of the leukemic markers.
The one other thing she said was that she would probably eventually place me back on Gleevac, which does not thrill me. It’s an expensive chemo pill that’s used to inhibit the nasty Philadelphia chromosome that made my leukemia such a high risk requiring the marrow transplant. When I asked her why I would need this post transplant, she said that I may not even need it, but she likes to put people on it. Currently there’s study going on to see if it’s necessary. Afterward, mom and I talked about it and we’re going to have a real conversation about this with the doctor before she puts me back on it. My co-pays on drugs are quite high already. A few of these drugs cost over $100 and I’m on A LOT of pills. Gleevac also caused me to get sick before, so if it’s not necessary, mom and I question why I need to have it. So, we’ll see. Of course, I’ll do what the doctor wants in the end, but we’re just not going to let this one slide without some further questions.
In the end, it was a good visit. We see her again next Wed. Basically, it looks like the next two weeks will continue the same with labs, doctor’s visits, and physical therapy – as long as I stay like I am now, if not better.
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Awesome news! I will pray for wisdom for the doctor and the conversation regarding Gleevac. God is good!
Keep up the good fight because you are winning. You have many people behind you covering you in prayer.
Great news! God is good…. ALL the time!!!!