Brain Tumor

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

Brain Tumor

Brain Tumor Radiation Treatment #15

15 of 28, 3 full weeks complete, and officially more than halfway done with 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 anyboday’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 relatationship for a really long time. But if they can’t lock me in place because I don’t fit? Well, that’s a problem.

Scar is looking good. Some irritation from radiation making it red. Feels like sunburn.

TGIF, though. The weather in metro St. Louis is gorgeous! Also, construction wall pics just because.

Brain Tumor

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.

Fibromyalgia

Brain Tumor Update for March 21, 201

Stuff that still tastes decent, for the record:

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

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.

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Brain Tumor

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!”

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