Fibromyalgia

Cancer is Complicated

Something has given me an itchy rash from hell.

You know you’re in for a medically challenging day when your oncologist wants to take you off a drug you’ve never been prescribed and have never taken because it’s been known to cause a rash… and try a different one in its place. And then they send that Rx to a pharmacy 2.5 hours away even after you gave them the home pharmacy info.

::giant sigh::

Fibromyalgia

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!

***

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.

***

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.

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 · Fibromyalgia

February 27 at 10:53am

Dan’s on his way to Urbana for a couple of days to take care of some things on the homestead. I am allowed to travel, but it’s just too hard. I am very sensitive to light and sound the past few days. So staying put with mom & dad and continuing to heal up after surgery.

Made an attempt to Google my tumor type last night and got kind of panicky. So I went back to playing Farm Heroes Saga. Dan went over the images with one of my docs when I was out of the room. Not quite ready for that either. There are counselors I can talk to when I’m ready. But I’m not. Yet.

Starting to have really bizarre dreams at night. Tumor? Meds? Subconscious processing reality? No idea.

Still feel better than I did before the biopsy. Which has me kind of amazed. I knew things were bad, but you kind of lose track when all the bad stuff just piles on.

Anyway, enjoying my “vacation” from doctors & treatment while I can.