Should I still be so tired?

[AnnClare]

As I'd mentioned in a previous post or two, my 15th and final full-brain radiation zap was Monday (Memorial Day) morning. I suppose I notice MODEST improvement in the way I feel, but I'm still FAR from being 100% myself. I'm at work today (still light duty only), so that's a good sign, but I find I still need to take rest breaks rather frequently. It takes NOTHING to make me tired. Yesterday evening the Mr. and I went to the grocery store. It wasn't a particularly long trip, but by the time we made it to the checkout, all I could think about was getting home, removing my wig, and plopping down on the sofa.
I slept well last night, but that didn't stop me from cussing the alarm clock when it sounded at 6:30 this morning. But I quickly stopped my cussing and said, "Hey, my eyes are open, and I'm breathing. It's a win!"

I know radiation keeps doing its thing even once the actual zaps have stopped. I know the side effects (fatigue, in particular) can linger. I know that, for many people, radiation is harder than any other component of cancer treatment. I realize my last zap wasn't even a week ago. But damn - will I ever feel like myself again? Right now, my greatest fear is that I won't. I'm tired of being tired. I'm tired of saying, "I'm tired."
I'm grateful that I feel well enough to still get out and about and do 'regular ' things, albeit on a limited basis. I suppose I'm still in a bit of denial of my 'new normal.' Yesterday my thoughts drifted to my pre-c life, which doesn't do me any good. Things were so perfect, yet I didn't realize it. The stupid shiz I worried and/or complained about in those days - goodness, how silly I was! How innocent, how naive, how foolish! I remember 'expecting' to live to at least 92, no question. On June 18th I'll turn 43 (Universe willing!). Now making it to 44 or 45 feels like I'm asking / expecting too much. I try not to "go there," but sometimes that's where the thoughts meander to before I can stop them.

Okay, enough boo-hooing - drying the tears, slapping on a smile, enjoying a lovely latte, and reminding myself to focus on, and be thankful for, the good stuff in my life.

[MissMolly]

AnnClare:
In addition to the effects of full brain radiation, you have been on hefty dosing if decadron.

Decadron (dexamethasone) is a potent corticosteroid. It is THE mist powerful of the corticosteroids.

One of its more prominent effects is to spur a loss of lean muscle tissue and overall strength. The large muscles of the thighs and buttocks are most affected, as well as the upper shoulder girdle and upper arms. A typical person on long-term steroids has a body frame that is noticeable for pencil thin thin arms/legs and a protuberant abdomen due to a redistribution of adipose tissue.

Dexamethasone also affects the pancreas and production of insulin. Your glucose levels and energy availability have likely been affected.

I have lived with compromised health for several years. It was not a trajectory that I saw in my horizon. Looking back to become the person that I was pre-diagnosis is not a reasonable possibility.

My best advice to you is to take stock of your abilities and capabilities and create each day based on where you are - in body, mind, and soul - for that day.

There is writing that might appeal to you on fatigue and being tired. Google "The Spoon Theory."

"The Spoon Theory" will give you a working anology to apply to the fatigue and loss of energy that you feel. It is a good read for anyone trying to come to grips with fatigue.
- Karen -

[AnnClare]

Karen,

Thank you for your reply. As always, your responses are very informative, insightful, helpful, and appreciated.

[Lee]

I believe Karen is on to something with her post. Radiation wiped me out too. It was about 4 weeks when I began to feel normal again. Can't remember if I was 6 or 8 weeks out from radiation that I had my surgery, butt it was only in the last 2 weeks prior to my rectal surgery that I felt normal again.

Actually it's been less than a week since your last treatment. At this point, radiation is still working hard, add to that what Karen said, yeah I'm sure you are VERY TIRED still. Can you put a call to your radiation doc & see what s/he says.

Hope it gets better for you soon.

lee

[AnnClare]

Thanks, Lee.

I'm such an impatient person - always have been! I guess I should be glad that hasn't changed because it means I'm still in there somewhere!

Ever since my Dx, I've thought part of this (if there is ANY reasoning to why it happens - still not sure there is), I've thought, "Maybe it's time to finally slow the bleep down. Take a minute. Smell the roses, proverbial and actual." I keep saying I'm going to do that - I need to be better at sticking to my word.
There's no place I have to be right now other than where I am. (Maybe I should write this on my little cue ball head as a reminder!)

[Lee]

Ever since my Dx, I've thought part of this (if there is ANY reasoning to why it happens - still not sure there is), I've thought, "Maybe it's time to finally slow the bleep down. Take a minute. Smell the roses, proverbial and actual." I keep saying I'm going to do that - I need to be better at sticking to my word.
There's no place I have to be right now other than where I am. (Maybe I should write this on my little cue ball head as a reminder!)

Personally I think you are doing great job!

When I was first diagnosed, so many things were happening. I believe it was the radiation clinic wanted me to sigh up for their meditation/yoga classes. I remember complaining to a friend how I did not have time for this classes. She shot back tell them no and leave it at that. The class is suppose to "relax" you, NOT "stress" you out.

So in response to your above comment, do what ever makes you feel good. You remind me of someone who is always busy. And when you have a cancer diagnoses, with so much of your life "out of your control", you WANT to have "some control" over your life. If you don't want to smell the roses, don't worry about it.

Hang in there,

Lee

[MissMolly]

AnnClare:
You are your own best therapist.

You wrote: "There's no place I have to be right now other than where I am."

Seriously, this statement is spot-on. This statement speaks to anyone struggling with how to make amends with loss of health.
Your words have staying power.

I have printed your quote and placed it on my bedside where I can glance at it periodically.

Here is the web address for The Spoon Theory:

www.butyoudontlooksick.com

Sending you my best,
- Karen -

[CRguy]

Personally I think you are doing great job! YES

So in response to your above comment, do what ever makes you feel good. YES ... details to follow

Hang in there, 24/7/365¼
Lee

Stress
drugs
surgery
radiation
doctors
used to be's
wanna be's
wazzups ?
wazz HAPPNIN' ?
WHAT NOW
WTF ?.......

pretty much a CRC exec summary ... IMO

Toughest thing I ever had to learn was
" be tough on the problem ... AND .. gentle on the people " WHEN the people was ME

NOT in my nature to give an inch
... BUTT I had to learn how to do a new battle when the enemy was IN me

...AND ... I really had to learn to be a NEW ME
not done with that yet ... I am sure to the great disappointment of others ....

Be kind to yourself ... YOU
are the only YOU you've got !

and like I said in another topic :
This is ME , NOW ...... kind'a thing

You are kickin' BUTT sista'

STILL on the Journey with y'all
CRguy

[JudiB]

Even though I haven't been through half what you have, I so understand how you feel about wanting life to continue as before!
I send lots of hugs and good wishes that things soon get a little easier for you.
I too am a "busy" person...lots of lists and things to achieve each day, but I am slowly realising that lists are bad for me at the moment... except for reminding me of things I might forget! I never manage to do everything on my list so feel down about that.... I do stuff on good days and try not to beat myself up for resting when I need to! We need to slow up a bit, let our bodies respond to our treatment and recover.
I keep up the activities I love and try to prioritize these...not easy when the ironing needs doing!!
I find guided meditation helps when I feel down due to fatigue and it provides me with an "activity" whilst I rest...great as I hate unproductive time! There are some good ones on You Tube. I also knit more as this also makes my resting times feel productive! Maybe there is a craft you enjoy that might help you "enjoy" rest times?!
As others have said exercise helps but, for me , this needs to be like walking, gardening ( when I can!), rather than in the gym! I think it's important to find an activity you enjoy if it is to be sustainable!
Once again, I hope you find strength (and the patience!) , to get through this difficult time. Folks on this great forum are always here for us!
Love and hugs
Xx

[Pita]

"There's no place I have to be right now other than where I am."

Thank you for this great piece of advice AnnClare! Think it will be easier said then done but know that I will be thinking of you as I attempt this also.
Best wishes, hugs and prayers to you... oxo

Linda

[AnnClare]

Lee, Karen, CRguy, JudiB, Linda ~ goodness, y'all are amazing. Your responses are helpful, touch my heart, and help me when I feel a bit down.

RE: exercise - yes, it helps with recovery and energy restoration, yet it's a balancing act. Not too little, but not too much. I watered the plants on our porch this morning, as I do every Sunday. (That's my version of gardening. I've always had a brown thumb, and I accept that.) Walking is my activity of choice (no heavy lifting at the gym for this gal for a while, maybe never - but I'm okay with that). I also do a few body weight moves throughout the day, when / if the mood strikes. Yesterday I did 100 squats, in increments, not all at once. After each little set, I'd feel a boost of energy - yay. Today my glutes feel ever so slightly sore, a sensation I've not felt in months! This morning I walked a few laps around the backyard, but due to the Southern heat, I couldn't stay out there too long. I also picked up a couple of dumbbells earlier today, 8 pounders, not the 15# & 20# that I had been using. No worries. I'll get back there one day. Or not. Whatevs, as the kids these days say.

RE: hobbies - yes indeed these help! I love You Tube (including some guided meditation), plus a few of my favorite old movies & old TV series (ex. Charlie's Angels & M*A*S*H) on DVD. Then there's my coloring books, and a couple of good novels at the ready. I swung by the library on the way home from work the other day - I love our library. I also journal, but with my right hand still effed up, I can only write for so long before frustration sets in. But I keep working at it. I will not give up!

[Lee]

Thinking of you, hope your day is going well.

Lee

[AnnClare]

My head still doesn't feel 'normal' - I'm still experiencing that disconnected/fuzzy feeling, though maybe it's gotten a little better? It's hard to tell exactly. I get a dull ache up the back of my head now and then, which I've found is alleviated once I stop what I'm doing, sit down, and close my eyes for a few minutes.

I suppose recovery happens in increments, and NEVER as fast as we'd like (if at all!) I read somewhere that healing isn't linear, but can be a bit like a stock market trending line - ups and downs, while continuing (hopefully) to trend upward. Kind of like one step forward, two steps back, or two forward, one back, or any variation thereof. Point being, it tends not to be that each day can hold a set back or a status quo, not necessarily a marked improvement.

I still say each day I get out of bed, breathing and alive, it's a win. And I keep hoping that tomorrow will be better than today. Gotta have hope! (Even when it's kinda hard.)
Keep on keepin' on, my fellow butt-kickers!

[Lee]

You're doing great, one day at a time.

Your fellow butt kicker,

Lee

[Lee]

Thinking of you, hope you have a good weekend.

Lee