Thursday, May 19, 2016

The Elephant Trunk -- Health Update

Last night was quite a wild ride. While having some delicious soft serve ice cream at Dairy Queen with my good friends, and husband, I felt a "pop" in my stomach after laughing a bit to hard at an internet comments thread. Water gushed out of my stoma all over my pants, and I immediately knew that the balloon holding the feeding tube in my stomach had popped. Oops!
I quickly went home and took the feeding tube out to replace it with my back up -- and found that I had no back up! BIG problem. Stomas (medical holes in the body) close extremely quickly, and without a tube to put into the gaping hole in my abdomen it would quickly close which would mean surgery to reopen it. I wracked my brain and decided the best option was to stick something in the hole. (Hardcore I know lol) I ended up sticking an extension set inside the stoma which fit perfectly! It was a bit odd and uncomfortable, but better than a second surgery!

It was about 10pm by this point and my gastro's office was closed so we packed up and headed to the local hospital to wait in for a tube I could place. I would bleeding pretty profusely and looked like a bloody mess holding my abdomen! haha Poor random people waiting in the ER were probably really freaked out! After two hours of waiting while more serve cases were triaged, I finally made my way back into a room and requested a feeding tube. Luckily, the emergency department had one on hand that could be placed until I can re-order the tube I normally use called an AMT Mini One Button. Unfortunately, the only tube they had on hand is the size of an elephant trunk, leaks, and makes me smell like barf all the time.

Here is a fun size comparison of my old tube vs the temporary one. The old tube looks much like a beach ball top that just sits on my stomach, while the current tube has a long hose hanging out the abdomen. You can see why the current is not my favorite accessory. My new tube should be here early next week - hopefully. Life is always an adventure when you're tube fed!

In other REALLY exciting news I recently found out I have been granted a wish from the Do It For The Love Foundation! They will be sending me to a concert of my choice (near my home), and possibly to even meet the artist! Thank you to my incredible friend Michelle for nominating me for this amazing opportunity! I will keep you all updated on the wish process! For more information on their foundation, or to nominate a patient in need of the healing power of music visit their website! (Link above)

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!

Thursday, May 5, 2016

Radio Star Extraordinaire - Health Update

It's been an eventful week. Monday started out with a 3am emergency trip to the hospital with a very distressed Chanel. I should probably give some back story before I divulge into that lovely journey. I often experience something called Sleep Paralysis; this is a phenomenon where an individuals brain is awake, but their body is not. Imagine you awake from sleep to find you cannot talk, or move. You try to scream and thrash but it feel as though someone is holding you down and stuffing a pillow over your mouth. Your chest and extremities are heavy and you feel like you're suffocating. Often times this is accompanied by hallucinations of voices, or odd sensations.
Sounds horrifying right?

It is. In medical literature it is described as: living in a fully conscious, un-wakeable nightmare. Most SP patients experience one terrifying episode in their lifetime, but very rarely a patient has recurrent episodes, sometimes even more than once in the same night -- of course I am the latter. I quite often jolt back into body and mind conciseness screaming bloody murder. (My poor husband.) Typically this phenomenon accompanies nightmares, which makes the situation so much worse.

Monday at 3am my husband woke me, saying I looked distressed. I remember having a particularly difficult episode of SP before I was awoken. He said I sat straight up and began to cry. From the moment I woke I was in an altered state of mind, unable to retain any short term memory, and in utter confusion. Noel said I kept mumbling "somethings wrong," "how did I get here," "what's happening." Twenty minutes into trying to calm me he decided to pack me into the car and head to the emergency room. Apparently I was not an easy patient as I was extremely disoriented and had no idea how I had gotten there. I knew who I was and where I was, but had no recollection of the events that brought me to that point in time. From a medical stand point it would more than likely be described as Psychosis. This altered state lasted three horrifying hours. Eventually the emergency team pumped enough anti-anxiety meds that I fell asleep; upon waking I was back to normal. The physician described the situation as an acute panic attack form a particularly severe episode of SP; however, I am not sure I am comfortable with that diagnosis. I decided to branch out for a second opinion of my issue and was told it was less likely a panic attack, and more likely a psychiatric sleep disturbance. Luckily, their is one specialist in the state of Washington that deals with such issues and he is located about 20 minutes from my home! Hopefully he can explain this odd occurrence of my altered state, and we can leave this all behind us. It's pretty unnerving to feel so out of control. I have never experienced anything like this in my life, and I hope never to again.

Due to a condition called Angioedema, my face swells up when under great stress. You can bet this episode caused my condition to flare, and my face to look like a ridiculous puffer fish. (Honestly, I could barely open my eyes they were so swollen.) I had a local Seattle radio interview scheduled for that morning and you bet I wasn't going to miss it just because I was in the ER a few hours before! lol I attempted to slap some make-up over my puffy eyes and ran off to record my interview! It went super well and I had an absolute blast with the host of Uplift Radio 1150 KKNW. Listen to my interview here: Chanel White On Uplift Radio
(Yes, it is the correct link for my interview -- There is a small intro for another speaker, but my interview starts at 1 minute and 50 seconds! It's about 45 minutes long.)

In other news, we finally got the whole Mesna allergy situation solved. We have decided to move forward without the Mesna at all. While yes, this drugs function is to protect the bladder from Cytoxan, it is not a "guarantee," and more of just an "added bonus" to a heavy saturation of IV fluids.  While it's absolutely preferred to have both fluids, and Mesna when receiving Cytoxan, it is possible to receive the infusion without it. We will keep my Cytoxan dose low for now to see how well I fair without the Mesna, and if I tolerate it well, possibly go back up to my full dose. I am a tad bit nervous to continue without this drug, but I guess it's better than anaphylaxis!