After 18+ months, this update shares what has transpired, including multiple new seizures, changes in medication, new decisions made about flying and more.
Read MoreThere are several aspects of today that I could share but nothing else is as important or surprising as our appointment with our neuro-oncologist. After reviewing the MRI from today she told us that we didn’t have to complete the last round of chemo that was scheduled to start on Monday.
Read MoreI had trouble falling asleep last night, tossing and turning for 30-45 minutes before actually passing out. Thankfully, since we had gone to sleep a bit early I was still able to get around 7.5 hours of sleep. It makes it a bit more difficult since we wake up at 5:30a during the week but as long as we start to unwind by 9-9:15p then we’re usually good.
Read MoreI was exhausted after a long day of meetings yesterday and ended up sleeping nearly 30 minutes later than usual. That extra sleep helped me to get almost 8 hours of sleep which helped to give me energy to power through the day.
Read MoreFirst off, thank you to everyone who reached out since I published last night’s update. It is a great feeling knowing that next week we will finish the last round of chemo. I barely got 7 hours of sleep last night but still hit my goal with 5 minutes to spare. I slept much better last night and didn’t have any additional nightmares about having another seizure.
Read MoreThough I slept hard last night, I had a nightmare that I had another seizure. It was a nightmare so real that it took me a while after waking up to shake it off. One of the scary things following a seizure is the fear that another one is going to happen. It happens every time I stutter or search for a word.
Read MoreRemember how I mentioned being happy that Sasha and Darren didn’t wake me up at 5:40a yesterday morning? Well, this morning Darren decided to start crying for attention at 5:10a. I woke up a bit confused, originally thinking that it was Monday morning and wondering why Laura hadn’t gotten up already. And then I realized that it was barely past 5:00a on Sunday morning and I proceeded to go back to sleep for another 1.5 hours.
Read MoreAt least Sasha and Darren let me sleep until 6:30a this morning instead of starting to wake me up at 5:40a like they did yesterday. Every weekend there is a small part of me that hopes I’ll be able to sleep until 7:30-8:00a but it never happens. I am always up between 6:15-7:00a which is okay because it allows me to get over to the gym before Laura wakes up.
Read MoreI had intended on sleeping in but at 5:40a Darren started crying as loud as he could until I opened the bedroom door. We used to keep it open but after Sasha got into some after-hours trouble, we keep it closed now. I was able to fall in/out of sleep for another 45 minutes but Darren was walking all over us so it wasn’t great sleep. Still, though, I was able to get 7.5 hours of sleep so I was happy with it.
Read MoreAfter a week that was stuffed with a lot of meetings, it was nice to only have one meeting today so that I could put my head down and focus on getting through a number of deliverables. I was able to stay productive the entire day before finally running out of steam around 30 minutes before I left for the day. While I’d like to think that I am fairly productive every day, there are those special days when you get into a zone.
Read MoreI typically set my alarm for 5:45a during the work week but today I set it for 7:00a since I didn’t get to bed until around 12:30a. Sasha and Darren woke me up around 6:30a but that was still 45 minutes extra sleep that were helpful.
Read MoreI didn’t get as good of a night’s sleep last night as I hoped I would, especially since I was home alone while Laura is at a work offsite. I got just barely under 7 hours of sleep so it wasn’t too bad but wished it would have been more solid.
Read MoreI have continued to get a minimum of 7 hours of sleep consistently since my seizure 2 weeks ago with the exception of a couple of nights where it was just under that mark. Not only is this important for overall health but it has become even more important for me to track due to my last seizure being attributed to fatigue.
Read MoreWhen I first woke up this morning I thought that we had overslept since I never heard the alarm go off. And then I remembered it was Sunday and I didn’t have to worry about waking up to an alarm until tomorrow. What a wonderful feeling.
Read MoreThe kids woke me up earlier than usual for a weekend day but I was still able to get just shy of 8 hours of sleep. As usual, I slipped out of bed so that Laura could sleep in and took Sasha out for her morning walk.
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