After 18+ months, this update shares what has transpired, including multiple new seizures, changes in medication, new decisions made about flying and more.
There 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.
I 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.
I 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.
First 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.
Though 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.
Remember 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.
At 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.
I 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.
After 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.