16 May 2008
Friday, 10:20 PM
High-Level Journal Summary: At the end of a crazy week, looking back at what everyone on 38 Lemon has given to our family. In the spite of a family death and then a sudden hospitalization of me, your messages played a huge part in our therapy. Really.
At the end of this night, my Mom and I were listening to jazz and singers from the 1940's to 1960's (without any ads) and chopping up fresh pineapple from dear friend Adele McComas-White. Life was transformed from YOU filling in our lives with so much love when logistics made it so hard to do it ourselves.
I thank you for all you have done for us in a single month, week, and day. I am blown away just for that.
Countdowns:
1.) Day 11 of 21 in Cycle 3 of Carboplatin + VP-16 chemotherapy.
2.) Move back to my home on Saturday, 5/17/08. One parent will always be in town, even though Dr. Dipti Patel (my local neurologist) thinks that as of now I have that ability to be physically alone during this close-watch process.
2008 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was today. It happened at 5:15 PM and was a 60 second light SPS. Very easy on my body, actually.
2.) In 2008, I have had 65 SPS's in 137 days. This is an average of 1 SPS every 2.1 days.
Website Updates:
New technology has been added to the Messages tab to help avoid SPAM messages. This should allow messages to be posted immediately instead of waiting for postage by 38 Lemon. We will be using and testing this software technology for the next few weeks. So far, so good. It balances all things in safe ways. I took a huge sigh of relief when the most senior engineers of Blue Water Media were able to make these changes. Good work on both our parts to make this happen.
Actual Journal: I am too tired to write anything of substance or length (I think). What a day! The day was dominated with the following conversations:
• Emergency medical bills to establish my secondary insurance.
• Dealing with my some personal insurance items.
• Having a meeting with my local neurologist and her team.
My Mom and Dad were both strongly involved all day long. We are all beat. We all feel the impact, especially after just losing my Grandpa Miller who was buried in Florida on 5/5/08.
I feel love in the middle of it all
With our family pulled in so many directions all at once, we cannot be everything. And now? Look at all the love flowing over the Messages tab of 38 Lemon, let alone the phone calls from family and friends who have phone numbers. All forms of outreach are so humbling -- and truly helpful.
I thank everyone. It could not have come at a better time. Every. In 3.5 years of brain tumors, this is one of our biggest surprise of all. This was the time where all of you played a huge role for us all.
See how you helped?
I can slowly digest more technical information as the weekend slowly processes. For now? Listen to more Ella Fitzgerald while my Mom carves down fresh pineapples sent to me by Adele McComas-White of my Virginia Tech days. (Wow, Adele! Outrageous. Totally outrageous. This is SO good.)
My Grandpa Miller can laugh at the 2 of us as my Mom sings away and does the chopping of this pineapple. Great music flows and my Mom and I guess at the singer before I check the singer's voice on the T.V. We both feel deeply loved and supported by all of you.
