October 10, 11 and 15th updates to FB

Update on Thursday and Friday’s appointments from last week. Great news. Along with an incredible sense of peace from God brought overnight on Wed- Thursday morning went very well. My spinal tap numbers are much better! White count norm is 0. It was 37 for first test and 11 on Monday (10 days apart)! I did not get my infusion because I am on the steroid, but I am still in the trial and have 12 weeks to get off the steroid. I should be able to get the next scheduled infusion on Halloween. I saw a neurologist Friday and will probably be on an anti-seizure med forever but because I was aware the entire episode, I can still drive! We are going to try some different anti-seizure meds to help me wake up a bit and avoid the depression. I also got orders for how to step down my steroid over the next month beginning on Saturday. For such a rough week of many unhappy appointments it was a remarkable one. Danny has been beyond incredible. Good news friends. Good news.  I have an MRI and followup with my radiation oncologist (brain guy) next week, and then maybe a break until Halloween! We can only hope!

And from my “normal page” Monday the 19th:
I worked harder than I have in ages today. Many loads of laundry dealt with, FOUR stores stopped at, including a less than $100 Costco trip, dinner prepped, active homework with the kiddos and played Outburst Jr with the family after dinner. I also have an appetite that I could unhinge my jaw and eat a chicken whole, but don’t think my caloric needs are quite that extensive yet. The steroids are talking! (Oddly enough, I am on day 3 of the lower steroid dose!) Must be the steroid in combination with actually sleeping last night. Here is to being able to stay still in the MRI tomorrow! Yikes!

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