Day 56. Latest Updates.

Yesterday was my ATC day and I received quite a bit of information. So I wanted to share a variety of prayer requests and updates.

First of all, my Tacro labs came back very low (2.8) so they had to increase my Tacro meds (the ones that work on my GVHD) from 3-am/4-pm to 5-am/5-pm. An increase of another three pills per day will increase the possibility of headaches. Ugh! However, I did confirm that the increase in my Topamax does allow for three Oxycodone AND Dillaudid for a total of six pain pills per week if needed. However, there have been times when I have needed that many in two days...but not in the last two weeks. So the short of it is, please pray that my Tacro numbers stay between 7-10 and that my headaches would be minimal.

I also learned that they want me to stay at mom's for at least another month, based on if I don't have any more hospital visits, longer if so. Tomorrow will mark two weeks since I've actually been in the hospital, but the incident Sunday a week ago, Father's Day, counted as an "incident" because my bags were packed and they were ready to take me.... So Sunday will count as my true two week mark. Things have gone very well at my mom's. She has been most gracious. And I know that in the years ahead, we will look back at these weeks with very tender memories.

They are also looking to wean me from the ATC. I was going to ask, but didn't want to seem pushy since it's only been a few weeks. But Dr. Shah brought it up since I have been doing some better the past couple weeks. If I do not have any more incidents over the next two weeks, I will continue in the ATC through Friday, July 6, and start weekly labs and seeing Dr. Shah in her clinic once a week on Monday, July 9. I will continue that throughout July, and then we are scheduled for our first Survivorship Class on July 26, followed by another round of tests (labs, CT Scan, Bone Marrow Biopsy) on July 27. After that, we should better know where we stand and what is next in our process.

In the weaning process, I will be taking in one fewer fluid pack each day, so the responsibility of fluid intake will weigh heavier on me to make sure I keep my kidneys and liver flushed with all the meds I'm on. I can't imagine drinking any more than I do now, but please pray that I stay properly hydrated. I should be able to tell by my output.

I also learned that it will be early October by the time I would be eligible to be considered for vaccinations. We talked about the things that I am still not going to be able to do for quite a long while. It's hard because so many are such a part of me. But I continually have to remind myself to look at the big picture. God has given me a new lease on life. The little things, and even some of the bigger ones, will just have to wait. I do believe I have written extensively about waiting on the Lord. And so we continue. His goodness continues. His mercies are new everyday. Great is His faithfulness. How can I give any less?