Rash, Rash Everywhere

Remember how I said at least the rash wasn’t on my face? Yeah, guess what I woke up to this morning?

My left eyelid is so swollen, it’s like I installed an awning over my eye. I’m fresh out of big girl panties and have scheduled the rest of the day to feel sorry for myself.

I WAS SUPPOSED TO HAVE TIME OFF FROM THIS CRAP!

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Since I’m not supposed to be in water (shower or bath) for more than 5 mins a day and that means ice baths are out, I’m going to need someone to manufacture a body suit with gel insides that you store in the freezer. This swapping out a zillion different ice packs all day long is getting old fast. I literally have to sleep on ice to keep my skin temp down.

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Cancer treatment is not for the weak… or the superficial as it turns out. I now have steroid acne all over my forehead. And at LEAST three more weeks on the dexamethasone.

Sorry for readers with more delicate sensibilities, but I’m claiming ‘roid rage:

When this is over, that motherfucking brain tumor better be the size of damn pea.

Another Day, Another Radiation Treatment

Another Day, Another Radiation Treatment

radiation treatment 20

Radiation treatment 20 of 28. This concludes week 4. The swelling is painful, guys. I mean yeah, I weigh more than I did a month ago, but my skin is stretched so thin I feel like I’m going to pop. Steroids (dexamethasone) are a blessing and a curse.

I Get Around

I’ve been awake since 3:30 this morning, but I’m feeling surprisingly spry. Walking around the house without the walker, just steadying myself every few steps by grabbing furniture and stuff. I am slow and disturbingly ungraceful when I walk, but… who freakin’ cares?

Looking forward to the weekend and not commuting to the hospital for a couple of days.

How my Brain Tumor Affects My Brain

brainstemPart of my tumor is sitting on my pons. Here’s what that little part of the brain does, according to Heathline:

The pons is a portion of the brain stem, located above the medulla oblongata and below the midbrain. Although it is small, at approximately 2.5 centimeters long, it serves several important functions. It is a bridge between various parts of the nervous system, including the cerebellum and cerebrum, which are both parts of the brain.

There are many important nerves that originate in the pons. The trigeminal nerve is responsible for feeling in the face. It also controls the muscles that are responsible for biting, chewing, and swallowing. The abducens nerve allows the eyes to look from side to side. The facial nerve controls facial expressions, and the vestibulocochlear nerve allows sound to move from the ear to the brain. All of these nerves start within the pons.

As part of the brain stem, the pons also impacts several ***automatic functions necessary for life***. A section of the lower pons stimulates and controls the intensity of breathing, and a section of the upper pons decreases the depth and frequency of breaths. The pons has also been associated with the control of sleep cycles.

All of these things have been affected; I have TN flares, am super sensitive to noise, choke on food, crooked tongue, and a droopy side to my face.

But that little bit about the autonomic functions is huge. The breathing (remember that heart stress test I had and the docs said I was just out of shape?) and the sleeping (“oh, you just need to practice better sleep hygiene”).

I have days where all I want to do is track down medical professionals who pretended I did this to myself and call them horrible, horrible names.

This is one of those days.

Some Info about My Brain Tumor

If you’re up for some light reading. Mine is a grade 2 (diffuse) astrocytoma, located on my brain stem. I’m entering the “that’s fascinating” phase of my little predicament. The linked article¬†briefly discusses Temodar, the chemo pill I am on. I am not a candidate for surgical removal of my brain stem tumor because its location makes surgery too great a risk.

I did have brain surgery already, but that was just to scrape a few cells from the tumor for genetic testing. It was for diagnosis and not treatment. My tumor has the IDH1 mutation, which improves prognosis. Yay!

Astrocytoma – NORD (National Organization for Rare Disorders

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