Should I still be so tired?

[Rob in PA]

AnnClare I like your chutzpah! Latte and living life. Keep it up and my absolute best wishes to you. Hell....I'm still tired.,get used to it.
Rob

[peanut_8]

AnnClare,
I've got a pair of bright pink athletic shoes that I've affectionately named the 'ass kickers' in your honor.
And the three of us have an appointment with the treadmill pretty soon.

Hope you're feeling a bit better this weekend, and have something fun to do.

Best Wishes,
peanut

[AnnClare]

peanut,

Aw, shucks - I'm honored and humbled.

Had the port put back in yesterday. In the afternoon I took a nap, which I believed went on for hours, but when I checked the clock (i.e., my cell phone), it had only been one hour.

Ever since last Thursday I feel like I'm struggling more each day with unsteadiness while walking, headaches when I wake up, and a general, overall "head pressure" sensation. From what I've read online by others who've undergone whole brain radiation, this is not uncommon. I'm 1 1/2 weeks out from my last zap, and this seems to be par for the course for how I'm feeling. I still have many Decadron tablets left in the bottle, but I refuse to take them. I don't want to get back on the steroid train unless I absolutely have to.
Yesterday afternoon my headache responded nicely to one Tylenol. (Although it didn't help the unsteady, foggy-headed feeling, but I didn't expect it to.)

Went out in the backyard a little while ago to walk some laps, but after just 6 (I shoot for 12 on each outing), my head was like, "No. Let's stop and rest." So now I'm back on the sofa, 2nd cup of coffee nearby.

Happy Weekend, my fellow warriors!

[MissMolly]

AnnClare:
Enjoy that cup of java/coffee. Coffee can actually reduce some types of headaches by its vascular effects.

No one "wants" to take a corticosteroid. No one "wants" to take decadron (dexamethasone). Its effects are potent and its side-effects are significant.

I a Queen of steroids, of sorts. I have been on corticosteroids for 20+ years and and depend on daily steroids to sustain life due to Addison's disease.

Your situation with use of dexamethasone is vastly different and more complex now than it was when it was being used as a pre-med for your chemotherapy or as an tool to dampen inflammation during your pelvic radiation. Your use of dexamethasone now is targeted to lower intra-cranial pressure. And that is a Big Deal.

When you feel a headache, you are feeling effects of pressure on pain receptors that line the brain/bone interface. Deep brain tissue has no pain receptors. That is why you see surgical patients who are awake (with twilight sedation) undergoing deep brain stimulation and electrode placement for epilepsy and Parkinson's.

Dexamethasone is not a medication that you can take ad-lib . . . i.e it is not a medication that you can take once in a while when you feel a headache. It is not like taking a tablet of Tylenol.

I encourage you to touch base with your radiation oncologist to discuss: 1. your headaches and balance issues; 2. and when/where/and how to incorporate decadron/dexamethasone to hopefully improve how your body feels living in your body space as you do and to enhance your quality of life. It's OK to get your medical team's advice and guidance on this important issue.
- Karen -