Brain / CNS Tumors Support Group
A brain tumor is any intracranial tumor created by abnormal and uncontrolled cell division, normally either found in the brain itself, in the cranial nerves, in the brain envelopes, skull, pituitary and pineal gland, or spread from cancers primarily located in other organs (metastatic tumors). Brain tumors may be benign or malignant.
Hello all!
Diagnosed with inoperable Glioma in January 2008 and given a year to 15 months to live. Well, it is 2012...I am still here...lost my husband to leukemia in 2010...kind of blindsided everyone. So prepared for my eventual demise and so less prepared for his.
Was a 15 year nurse when I was diagnosed. Not anymore, needless to say. Have lost the ability to drive. Lost our home, lost my husband- and moved from the country into an apartment. So much for losses.
What I gained? The knowledge that all any of us have is this very moment in life...an appreciation for...EVERYTHING. The ability to see/understand what is really important. A much more positive/happy attitude. In short..a new life.
Statistically, I am over 3 years past my "expiration date". I live every day as though it is the first and the last.
Some days are rough...and it is amazing to wake up the next morning.
Some days are amazing and I feel like I could live forever.
Adapting to the changes. Antivert for the nausea and dizziness. Ibuprofen for headaches. I refuse all other meds including the Lexapro they tried to hand me after the diagnosis...
"Sorry...if this isn't the time to be depressed...I don't know when would be."
Hot Fudge Sundaes...sunshine and exercise...meditation are all natural antidepressants.
Anyway...just wanted to say "Hi!" to everyone :)
(((hugs)))
Carla
Diagnosed with inoperable Glioma in January 2008 and given a year to 15 months to live. Well, it is 2012...I am still here...lost my husband to leukemia in 2010...kind of blindsided everyone. So prepared for my eventual demise and so less prepared for his.
Was a 15 year nurse when I was diagnosed. Not anymore, needless to say. Have lost the ability to drive. Lost our home, lost my husband- and moved from the country into an apartment. So much for losses.
What I gained? The knowledge that all any of us have is this very moment in life...an appreciation for...EVERYTHING. The ability to see/understand what is really important. A much more positive/happy attitude. In short..a new life.
Statistically, I am over 3 years past my "expiration date". I live every day as though it is the first and the last.
Some days are rough...and it is amazing to wake up the next morning.
Some days are amazing and I feel like I could live forever.
Adapting to the changes. Antivert for the nausea and dizziness. Ibuprofen for headaches. I refuse all other meds including the Lexapro they tried to hand me after the diagnosis...
"Sorry...if this isn't the time to be depressed...I don't know when would be."
Hot Fudge Sundaes...sunshine and exercise...meditation are all natural antidepressants.
Anyway...just wanted to say "Hi!" to everyone :)
(((hugs)))
Carla
(((hugs)))
Carla
(((hugs)))
Carla
Hugs
Maruska
I guess I wandered here because I want to let everyone know it isn't all doom and gloom and a doctor telling you you have so many months or a year...isn't always the end of your life.
(((hugs)))
Carla
Although maybe not as high as I used to.
The Paraneoplastic disorder which has probably kept me around this long (by helping keep the tumour in check through natural antibodies) is pretty effectively destroying my cerebellum. Although I can still ambulate...when tired my gait is very Capt'n Jack Sparrowish. To put it in perspective...in 2004 I was in Arizona rock climbing...today sometimes stepping up or down off a curb is a challenge.
Not complaining though. Or comparing. Happy to be alive and life is good.
Still only taking Ibuprofen and Antivert and it gets me through.
Have to drop more these days. The cat and I are tied now when it comes to "napping hours"...lol
And yes, still using hot fudge sundaes instead of anti-depressants.
Still using weekly Reiki and Daily Meditation and find both helpful.
Several people knew from the clinic that had similar glioma and went through the whole radiation/chemo/surgery invasive thing have had regrowth or are now dead.
I feel I have made the right decision. This is my 6th year post diagnosis. And now 4 years past my doctor given "expiration date"...at my last check up/MRI I explained to him that my new goal was to outlive HIM.
I take this goal very seriously.
He thinks I'm joking.
Anyway...wanted to pop back in and say "Hi!" and remind everyone never ever ever ever give up on yourself.
((((hugs))))
Had to go to an upright walker with wheels this year...secondary to the gait issues...but STILL walking.
Had some seizure activity earlier in the Spring but seem to be managing it with Depakote.
Otherwise still just using Antivert and the Ibuprofen for pain and nausea/dizziness.
And hot fudge sundaes and exercise for any momentary depression.
My last MRI late 2013) showed some growth into the R lobe...Astrocytoma...tenacles thing....but haven't had significant changes so far because of it. Still more good days than bad.
As of this year...in the small group that was diagnosed around the same time as I was in 2008 at the center...I am the only one still alive.
I feel much gratitude...and sad at the same time.
Above all I know I made the right decision by not treating it aggressively.
(((hugs)))
Carla
Your story and the sundaes your an inspration.....
Is FRED growing? Yes. Has he (it) caused me to adapt in many ways I thought I never would/could...Certainly.
But Life is still very good. Trust me...if it wasn't I wouldn't be here at all.
I have no problem checking out when it is time...but not today.
So here it is. And 6 years past my MD given expiration date. Heading into my 7th year post diagnosis.
Oh sure....I still engage in hot fudge sundae therapy once in a while. Beats the hell out of anti-depressants. Still walking...albeit with a hospital type walker. Slur more when I am tired and naps are essential not optional any more. I have let go of long distance travel and many physically demanding (and impossible) things I engaged in for years and find myself writing and reading more, doing some virtual travel through the magic of the internet and online shopping, and painting/cooking/container gardening...in short...Adapting.
Just wanted to pop in for a moment. Hearing really good things about the polio injection cure...but just observing at this time.
After a period of growth late last year FRED seems to have stabilized again for a while.
Still walking...although most of the time with walker assist now.
Still enjoying life to the fullest and continuing to adapt/adjust to any limitations.
Still going to outlive that Neurosurgeon.
It's my GOAL.
Making the REST of my life the BEST of my life!