March 19, 2021

Oh man...so what has happened..? I have been in and out of the hospital, had like a dozen seizures, things just haven't been going my way. It's been like 11 days since my last seizure, so I'm feeling good about that! Feeling like I can sit down and write this out finally. So two weeks ago Wednesday evening, I had a grand maul seizure outside my neighbors house, thank you neighbors for helping my wife out! Followed by several more focal seizures here at the house, followed by my wife calling the ambulance. I went into the hospital and was released at like 1-2 in the morning. Then I woke up and went to treatments on Thursday and Friday, only to have another focal seizure on Sunday, well several more in a row...like three or four. They then released me late Sunday afternoon into the evening. I got up and went to my treatments Monday morning and had another Six seizures here, another few on the way to the hospital, another several through the night, just to wake up in the morning still suffering seizures, so I don't know how many that was... But they managed to get me on Vimpax, a new seizure medication along with steroid to calm it down at which point I started not having the seizures late in the day Tuesday afternoon. So I stayed in the hospital for another few days to make sure I was clear of that, they let me out on Thursday afternoon I think it was. They kept me off the chemo meds and on the 100 mg of Vimpax, along with the 1500 mg of Keppra, Dexamethasone 4mg twice daily until Sunday. I've since titrated down off the Dexamethasone down from 8 mg to 6 mg which has helped my sleep a bunch. My wife has to play doctor with these people as she did some reading on the Dexamethasone and found that it really shouldn't be taken after 2 pm. So I went from taking 8 mg twice daily, once at 9 am and once at 9 pm...to 4 mg daily at 9 am and one 2 mg pill at 2 pm. Still taking the Keppra and Vimpax at 9 am and 9 pm.  My wife has also negotiated taking me off the chemo meds over the weekend to give my brain a break from that treatment, so we just have 5 days a week there. My radiation doctor asked me about taking something for my stomach since it isn't protected from the Dexamethasone, which golly gee, that would be nice since they weren't giving me that at the hospital along with my Dexamethasone and my tummy was getting upset. 

So in any case, thank you to my wife! You are the best for working this all out for me! I feel like I'm on the right path now and might make good headway on these treatments. I can't say enough good things about you and the way you have treated me in the past two weeks! Taking care of me and doing the dishes, cooking dinner and serving me my pills and all that you do! I'm so glad that I can help again even though you say you don't need it!

March 5, 2021

Today marks the end of week two of treatments, it has been an unfortunate week. Wednesday evening I had a seizure out on the street while my wife and I were walking. Fortunately it was close enough to home for her to go grab the car while a couple of neighbors kept an eye on me. However, later in the evening I had several more seizures, something like four my wife tells me. I don't remember getting up off the floor and walking to the couch after the first seizure at the table, but apparently that's what happened. She said that I kept going into one seizure after the other. The ambulance came and I guess it took four or five of them to get me on the gurney. So I remember the seizure out in front of the neighbors, and sitting there for a few while I got my bearings back. Then my wife got me in the car and we headed for home. I was good laying on the couch for a couple of hours, then I got up and went to the table for dinner. While I was sitting at the table another seizure came on and that's the last thing I remember before waking up in the hospital. 

We also picked up my dogs ashes while I was away. They came in a nice wooden box all sealed up for safe keeping. Along with a heart shaped wildflower planter.