Up and Down Week

Well I guess it has been a little while since I’ve blogged. I’m not sure where I’m at exactly but I do know this, the is the longest hurry up and wait EVER. I spoke to my neurologist, Dr. Dunbar Tuesday evening. She had spoken with my other Northside doctors and would be seeing Dr Kesari at a conference this week, so they would discuss my case in person.

She basically said the same things, changed my seizure medication to wean me off Keppra and go onto Depokyt, in home inspection and get me stability by means of a walker. Ya, that’s a tough one for me. I’m not a 70 year old woman, I’m a mom of young children. So I fought it until yesterday. The night before I walked into our dark bedroom and barely caught myself, almost eating the front of my bed. I give in BUT it has to be blinged out. So I’m sure you can only imaine. It’s going to be like pimp my ride, walker style. I’m actually quite excited now.

I had a great day Tuesday when mom and I shopped unitl we dropped. She pushed me in the mommy stroller until I was too wore out and no more bags would fit onto the arms of it. We ate at Tsunami Taqueria, which I don’t remember being as good as it was, and got a LOT of things checked off my Christmas list!

Wednesday came long and they had an opining for me at noon to get CSF drawn. Yipee. I talked a mile a minue. Xanax, Ativan, Starbucks, nothing was going to knock me out. Thankfully, it’s Dr. May. It didn’t hurt, it poured out easily, clear and everyone had a good old time. I’ll probably get those results, though they lie, Monday. Still awaiting tumor markers. Wait, no I’m not! Lol. They went up again – think about 30 more points so almost to the 200 mark. Booooo. We do know they can get pissed with chemo and go up before down, but seeing as how I can feel my liver pain, I would say the cancer has outsmarted the chemo. What’s that mean? Time to start a new drug!

We discussed that and my hope is that Opdivo is also discussed with Dr. Kesari. The other is likely a done deal, Xeloda which is pill form and also gets into the brain! Yay! I have an appointment Monday to meet with her and follow up with her on everything!

Now, something I do remember. Last night I had a horrible nightmare. I was having a seizure and couldn’t speak. I was trying to get Skip’s attention, crying and unable. I woke up and was super stressed. I grabbed the emergency Ativan pill I keep on the window sill and let it dissolve. I rolled over, closed my eyes, and everything was bouncing. The black, was jittery. I thought, okay, the ONLY other time I’ve felt this was the day before my second seizure. Is it possible to have a seizure while you sleep and not know it? I’ll beat you to the Google search, the answer is yes. Of course it is! Nocturnal Seizures. I need to read up a little more on it to see what “feelings” people have but I was on the adjusted dose for barely 18 hours when I awoke at 2AM. Today was miserable. I had a couple of good days this week and a couple of bad. Today was rough. I tried to get out with a friend and just had nothing in me. Tired, vision is bouncing non stop, even typing this sucks, Im just staring at the keys.

So that leaves me to the weekend. Darn, I didn’t even talk about the scary fun Tara and I had this week. Ugh, sorry. I just can’t type longer. I am SO tired.Big hugs and love to all, and special thanks to those who have helped support Brittany Black and her family this week. Team Nadine are some of the most beautiful people on this planet. God bless.

Be strong and Courageous, do not be afraid do not be discouraged, for the Lord your God will be with you wherever you go. Joshua 1:9

Friends remember that today, wherever you are, whatever you watch read or see. Be strong.