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

Swear Word Coloring Book Therapy

I began swear word coloring therapy today! Have to take lots of breaks because of poor grip strength. Also, the marker doesn’t always land where I think I’m placing it. But if I don’t practice, it’ll only get harder to regain my dexterity. #adultcoloringbook #btsm #BrainTumorShenanigans


Brain Tumor Radiation Treatment No. 15

Brain Tumor Radiation Treatment No. 15

Day 15 of 28. I am now have 3 full weeks complete, and I am officially more than halfway done with brain tumor radiation. w00t!

I have contracted what I’m calling the 4 o’clock flu. Because I am getting sick at that time every day now. Pretty sure it’s a treatment or med side-effect causing it because of it being timely, but which one is anybody’s guess at this point. I take between 16 and 20 pills every day…

My radiation mask is unbearably tight because of the steroids. Talks have begun between techs and my oncologist to see what they can do. Possibly adding a diuretic to help me shed some of the water weight.

I can bear the discomfort of the mask, because me & pain have had a weird relationship for a really long time. But if they can’t lock me in place because I don’t fit? Well, that’s a problem. They’re kind of persnickety about avoiding killing of the brain cells I still need.

The scar from my craniotomy is looking good. There’s some skin irritation from the radiation, which is making it angry and red. Basically, it feels like a a bad sunburn.

TGIF, though. The weather in metro St. Louis is gorgeous! Also, construction wall pics from Barnes-Jewish just because they’re part of my daily trip to the hospital.

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Feeling Yucky

Turns out if you miss your lunch meds and take ’em with your dinner meds so that you’re downing like 7 pills at once, you get wicked heartburn about 1:30 am. Ask me how I know.

In addition, my body spent all last evening trying to purge all the things. I have no idea if it’s a bug, my body flipping out over treatment, or just something I ate. But blargh. I have no fever, so that’s good.

Coincidentally, we are down a caregiver here at Suess’s Tumor Recovery Home. Mom’s got a bug or something, and she was out for the count all day. I’d ask you to send her cat videos, but she’s allergic to cats and Facebook.

Brain Tumor Update for March 21, 2017

Stuff that still tastes decent, for the record:

Baked potato
Scrambled eggs
Vanilla ice cream
Banana bread
Sweet tea
Peanut butter
Green smoothies
Cinnamon raisin toast
French fries

The radiation treatments are giving me canker sores and burning the skin around my scar. I have lotion for the burns and all kinds of stuff for dry mouth, so I do get some relief. I’m diligent about avoiding thrush, which is a common complication on radiation. (I had it when I had my tonsils out years ago and it. was. horrendous.)

In other news, I’m 6 hours past today’s appointment and mom says she can still see waffling from my radiation mask. That sucker is so damn tight now.

Talked to the radiation oncologist about the swelling and my worsening headaches. He says one option to reduce the headaches is to double my steroid dose. Unfortunately, that would likely also up my swelling, which is not exactly detrimental to my health, but it is really uncomfortable and makes it hard to get around.

For now, I’m just going to keep on keeping on until it becomes abundantly clear that I need to up the steroids or find another option.

Adding a picture of some dude getting head radiation so you can kinda get a feel for what I do mon-fri, and how the mask works. It keeps me from moving and keeps them from accidentally zapping part of my brain stem, which I really, really need.


Radiation Week 3

Today is Monday and the beginning of Week 3 of treatment. That means I have labs and doctors appointments in addition to radiation and chemo. It makes for a long day, so it’s also valet parking day. (On less stressful days, I try to walk to a wheelchair instead of plopping down in one first thing.)

The first two weeks weren’t terrible, but the cumulative side effects of treatment & my medicine are really being buttheads now. I’m so glad I enjoyed all I could at the start! That four weeks off from treatment that I get in a couple weeks is sounding really good about now. Can’t wait.

I’m really tired. The most frustrating thing currently is that I can’t write or color much. My hands are useless for gripping anything. I’m just that weak; tapping my phone uses up most of my spoons.

I want to do thank you notes and do things outside the house that don’t involve doctors or being pinned to a radiation table and read more and enjoy a movie or something, but I mostly just sit.

The good news is that by Friday, I will more than halfway through radiation. As Dan always says, “Eyes on the prize!”


Food Tastes Bad on Chemo, Yo

*sad trombone*

It’s official. Tonight my favorite pizza tastes like aged sweatsocks and ass. 😭

Somehow, this discovery is more devastating than my initial diagnosis.

Currently taking recommendations for foods that still tasted good to you or someone you know while on chemo/radiation.

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