A seizure

Hi all! The last two weeks have been a bit of a whole thing. Let me take you on a little adventure: 

On Friday the 13th I went for a lovely walk with a friend in the morning. I was feeling pretty great but a little hungry for lunch when I got back. I heated up some left over spaghetti but as I was bringing my pasta into our kitchen I couldn’t create a mental map of how to get to the dining room table. If you don’t know, I have lived in our house for 11 years and every way you walk in the main part of the house leads you back to the dining room. It’s not complicated. 

I was holding my warmed up pasta but was really confused on where I should go to eat. I found my way to the bottom of the stairs and Andrew heard me crying. He asked me if I was okay and I said “no, I can’t create a mental map of our house and I can’t find our dining room table. My field of vision is impacted and I am very confused.”

He took me to the dining room table and then put me to sleep after I ate. He told me that I was having a hard time making words, got lost a second time in our house, my body got rigid and I couldn’t move at all. Andrew called the paramedics, I got sick to my stomach, and the EMTs had to use a special chair to get me out of my house and into the ambulance because I wasn’t able to move normally.

I remember almost nothing about that afternoon. I don’t remember getting sick, being transported out of the house or in an ambulance to the ER. I remember having a hard time forming words after a while. I “woke up” coming out of either an MRI or CT machine (I had both scans done but have no recall of them). My team at WDH was in communication with my team at BWH. The plan was to get me transported down to Boston to be at BWH but we had to wait until there was a room available. Andrew stayed with me in Dover until about 12:30/1 am. 

On Saturday the 14th I was transported later in the day to Boston where I stayed for two nights before being discharged. The doctors looked at my bloodwork and my scans and determined that I most likely went through a seizure. Before I was discharged, I spoke to doctors in neurology, radiation, neurosurgery, and oncology. The team all agreed that although a stroke was considered, the scans really didn’t support a stroke. I def had some amnesia and memory issues on Friday the 13th. I had been struggling with memory for a few weeks (more than my usual) and then this episode happened. I was having trouble speaking, expressing myself, and remembering even familiar people. Failure of brain functionality is not something that brings me great vibes. I like it when my brain functions normally 😉 

I am now on an anti-seizure medication, steroids, and I cannot drive for about 5 to 6 months at a minimum as my brain slowly heals. This has all been very tricky for our family as we didn’t know how I would recover,  and whether or not I would feel different in a few days or a few weeks. At this point, I have more energy today than I did yesterday and more than I did the day before that, so things feel like they are heading in the right direction. — slowly. The medication I am on makes me fairly sleepy and I have been continuing on my chemotherapy, carboplatin. 

Tomorrow morning, I will be having another set of scans to check my brain activity and my body as it recovers from this seizure episode. I should be getting a third round of carboplatin in about 10 days unless the scans show a major explosion of LMD or cancer growth somewhere else in my body.

So far during the last six years, this experience has been one of the most scary episodes that I’ve ever experienced. Andrew said it was a terrifying experience to witness. I am so glad he was home at the time when I had this experience so that he was able to call emergency services. The kids came to visit me at the hospital as did Andrew. My sisters came to visit as well and it was so nice to have them here to be of comfort to me and to be of comfort to my kids.

I had some other visitors too, lots of calls, and texts. Thank you to everyone for checking on me but also for checking in with my family. Everyone appreciated the love and connection. 

I turn 40 next month, in just a few days actually, and I really hope I am cleared for travel because I have epic plans for my 40th birthday! 

I’ll let you know the results of the scans when I get those answers. Keep saying prayers, smiling, enjoying the changing of seasons, and hugging your loved ones! 

Love you!!