Sunday, May 15, 2016

Cytoxan Round Eight - Health Update

I finally feel like I am in the final lap of my treatment! The dose is lowered, side effects are more manageable, my hair is coming back, and we are no longer pumping me full of a drug I am allergic to. Only four more rounds to go, which means I will be all finished up by fall! While Cytoxan has been absolute hell, it has completely turned my life around. I finally feel like I am gaining control of my body after almost 5 years of watching it slowly slip away with failed treatment, after failed treatment. I am able to eat quite a bit by mouth now which makes me just ecstatic! Swallowing is still a major difficulty, but my lower organs are working enough to digest many foods. Omelettes, yogurt, oatmeal, soft cookies, ice cream, almost any drink minus heavy carbonation, etc. are all going relatively smooth! I quickly found out while experimenting that anything with seasoning, especially ethnic is an absolute NO GO! How did I find this out? ....I crapped my pants at the mall after trying some food I shouldn't have. Super glamorous I know. lol

But, lets get back to the Cytoxan! Round eight went off without a hitch once we nixed the Mesna. Since I had to stay over hydrated and attempt to pee every hour I didn't get much sleep for a few nights, but that's okay because my bladder is worth it! The nausea was much more bearable at the lower dose, though I still needed help from cannabis to not vomit.

This last week I also saw a specialist equip to deal with my odd sleep paralysis/psychosis incident. He was absolutely INCREDIBLE and had an answer to every last minute of that episode. He explained it like this -- there are two states: an unconscious mind, and a conscious mind. When people sleep they dive into the unconscious mind, also known as REM. This is where the body is paralyzed and the brain is essentially shut down. Due to all my health issues I never fully reach REM; my sleep habits keep me half conscious/awake at all times. Sleep paralysis happens when a person not used to REM suddenly dips into REM and the mind freaks out and awakes before the body has time to process what's happening. This can lead to extreme states of confusion called sleep drunkenness where the mind essentially logs off since the body cant keep up. You can't remember who, or where you are and enter an altered state of reality where nothing seems real. He explained that due to my many health issues this type of episode will likely happen again as my body attempts to find REM sleep -- and he was right. I had another episode of the sleep drunkenness this week after another bad bought of sleep paralysis. Luckily, he explained to Noel and I how to calm me down and guide me through the episode so emergency services aren't needed.

We talked about ways to improve my sleep habits and he prescribed some new sleeping medication to help place me in REM. I am a tad bit nervous to take them however as they can cause "confusional amnesia states" as a side effect. He said the only way to be sure is trial and error with patients like myself -- so needless to say I still have the bottle ominously sitting in my counter. haha He did however prescribe a small device that sits in my nose and opens my collapsed nasal valves that has already made a huge difference in my ability to sleep!

Have a great week you guys!


  1. You're amazing <3

  2. Even though I do not know you, I am so happy that you are having success with Cytoxan!

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