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!
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
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.
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.
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!”
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.
First chemo & radiation treatments are complete.
Here’s how my morning went so far…
5 am: Take Zofran (anti-nausea)
5:30 am: Take Temodar (chemo)
6:30 am: Take regular morning meds
7:20 am: Get radiation
8 am: Have weekly meeting with radiation doc
9 am: Eat birthday cake
I’ve gained 10 pounds since they made my radiation mask. It’s hella tight now and a little disconcerting to say the least. The tech warned me that I had waffle marks on my face when she took it off. I looked reptilian and naturally made Dan snap a picture. The mask was so freaking tight.
Did I mention they clamped my head to a table with a mask and it was really tight? 😉
The hardest part of radiation though is lying on the table with nothing to do but ponder my circumstances. (Same for MRIs.) There was a fair bit of me trying not to ugly cry while they played the 80s rock station for me. Today was Paradise City, Shoot to Thrill, and Faithfully.
I am generally in good spirits, but have my moments. It’s healthy to have moments, I do believe.
The rest of my treatment appointments this week will be midday instead of early morning.