Ramblings Uncategorized

Stability

Yesterday, I had another MRI. I get them every 8 weeks, yay me. NOT! I really don’t mind them, other than the radiation and the contrast they pump into my veins. Nothing like more toxicity into my body. I have gotten so used to them other than I feel like I’m going to start setting off alarms at some point and possibly become a magnet and find that I have to pry myself off of stainless steel appliances and cars.

There was a very tiny progression of the flare on my brain that my Neuro-Oncologist has been monitoring for over a year, but he doesn’t think it is tumor growth, so I have shared that I had a stable scan with everyone and no treatment is needed at this time. This was great news. I am just beginning to feel somewhat normal, well, my new normal, which I’m grateful for that. I’m not having as much pain in my joints and even though I would tell people that I am not in much pain, my friend told me, yesterday that it was obvious especially when I had to sit or stand up or walk or basically breath. I guess there are some things you can’t hide.

I talked to the doctor about the seizures whether they were actually seizures or mini-strokes because when I have them I lose function of my right hand, my lip goes numb and twitches and the right side of my face goes numb and droops and I drool. When I write that I drool, I resemble those sexist cartoon characters from the 1940’s who lose all bodily functions and drool over some big breasted, bootylicious dame who walks by. My speech slurs and I have a hard time speaking, but I’m aware of it all. I can usually feel it coming on and lay down the minute I feel that sensation. It lasts a long time and I feel very shaking at night.

My N.O. suggested that I increase my dosage of one of the anti-seizure medications and he feels like these are Focal seizures that I am having. Just to warn any of you if I don’t seem like myself it’s because of the medication and will hopefully resolve in a few day or weeks.  My friend who has Epilepsy summed it all up in these few words, “it feels like your brain is going in slow motion”.  Also, I don’t know how it will make me feel, but I took the extra dose, last night I didn’t go to bed or awake during the night shaking.

I am working on managing my stress.  I’ve had to walk away from some stressors in my life and that is very difficult for me. I am also working on my anxiety of the seizures and I have started a bedtime routine that seems to be working for me.  I have always had issues sleeping. For those of you who are great sleepers, I would appreciate any tips you can give me.  I cannot take Melatonin. I hope Tennessee legalizes medicinal marijuana so that I can take fully extracted CBD to help me sleep (sleep deprivation can induce seizures) and some research shows that it can shrink tumors. Maybe I’ll consider moving to one of the 33 states where it’s legal.

My family has several exciting things coming up. I’ll share those at another time, but for now, this is very exciting.

Thank you all for the continued love, support, encouragement, rides, listening ears, and treating me like I’m not an invalid. I feel like I’m getting healthier every day and it’s true what they say when you have a great support system, no one fights alone. My corner is so big we need a boxing ring the size of two football fields.

 

 

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1 Comment

  • Reply
    Marcie
    February 21, 2019 at 12:24 am

    Best news to hear…. tumor stable, seizures being addressed, pain lessened, Moment’s of feeling normal. These are enormous accomplishments and your perseverance and attitude are remarkable… just like you!!😘😘😘

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