Apr 11, 2017 | Brain Tumor
Our commute time to the hospital tomorrow will be 1 minute…and that’s just because I’m slow getting around.
Dan booked a room at the Parkway Hotel across the street from the Siteman Cancer Center so we can sleep in, have Panera for breakfast (also just across the street), and make tomorrow a total party.
Mar 24, 2017 | Brain Tumor, Fibromyalgia
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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Mar 21, 2017 | Brain Tumor, Fibromyalgia
Stuff that still tastes decent, for the record:
Vanilla ice cream
Cinnamon raisin toast
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.
Mar 20, 2017 | Brain Tumor, Fibromyalgia
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!”
Mar 6, 2017 | Brain Tumor, Fibromyalgia
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.