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"It is better not to Shrink then to Survive" My personal thoughts & experiences with my Inoperable Low-Grade Brainstem Glioma

bddixon83's picture
bddixon83
Posts: 2
Joined: Apr 2013
I originally posted this in a seperate topic under a  thread, but I thought posting it as a seperate topic my be helpful to more people,  SO here she goes...

I am a 29 year old, single mother, RN from Alabama & was "officially" diagnosed with a Low-grade Glioma on my brainstem on February 27, 2013.

However we have gone back and found evidence that the tumor was there in 2007, however much smaller... Anywho.

My tumor is inoperable, due to its size and location on my brainstem... i believe it is throughout my medulla, pons, and working really dang hard & spreading on down my Cervical spine.

I resigned from the hopsital I was working at as a floor nurse and now My full-time job is doing whatever I've gotta do to stay up & do whatever work & service I have left to to here.

Now... I say this & I don't feel sad or upset... not even disappointed, but I do not suffer myself by living based on what my "Prognosis" is... I've seen first hand in the hospital & in my life that you can't live your life based on statistics...

Life is life. there is no rationalizing or explaining why cancer, tumor, illness, death... happens and hits us... but it does... and it will continue to for every person on this earth...

As for me, I choose to enjoy my life... Love my son... Hold strong to my Faith... and do whatever is within my power to get myself healthy... mentally, physically, & spiritually.

I know that even as I am currently undergoing my radiation therapy & my chemo pill aka Temodar... that there's a chance that it'll come back, or won't go bc it's far to comfortable where it lies...

I'm really not trying to be all "preachy" so pardon me if that's how i'm coming off...

but as a Nurse & researching treatments and tumors... I've learned that the brain is a tricky tricky thing... brain tumors can or can't be cancerous. it can or can't be operable. Not all radiation therapy or chemotherapy works the same... and in order to know the MOST Effective treatment to kick that tumor's butt, would require a biopsy to know exactly what type of cells they're dealing with. Depending on the location, the grade aka aggressiveness of the tumor can enchance or limit your treatment options. It would be awesome if there was a simple one-size fits all cure/fix, but alas... there is not.

What is the point of my post... I can't rightly say... but I feel prompted to encourage you to research, but not to the point where it makes you crazy... Use only RELIABLE Resources.

Don't Live based on Your PROGNOSIS. I know mine, mine is simple straight & clear... *insert alabama twang here* "If this don't work... ain't nothing gonna work."

And even as I type that... I am filled with gratitude for all that I have been able to do in my life so far & whatever time I have left to here. My life may not extend out 50 + years as I had assumed, but heck, I would gladly and gratefully take any amount of time that is before me... Year, Years, a Decade? Fosho! If not, okay.

every person is different... all treatments and their effectiveness can and may be different, there is not way to know, and it's only natural to Need those answers... but there are times in life when all you can do is rely on your faith or find your faith.

 

It is my sincere hope & prayer that each person that comes across this will be blessed with a peace & comfort in there hearts & minds... There is nothing fair about why or how these things happen... but they do & I truly hope for the best for each of you & your loved ones who are enduring, or who have endured this fight.

if you'd like to follow my treatments & what's going on in my life as I get on through them, I've created a Tumblr page for my family & friends to follow... and I'm open to sharing it to anyone who may benefit from my experiences.

http://iwillnotshrink.tumblr.com/

zippymaus
Posts: 3
Joined: Apr 2013

You are amazing!  Thank you for this post.  What an inspiration.  :)

brperk99
Posts: 1
Joined: May 2013

Thank you for sharing this...I hope more people read and truly understand the wisdom so well spoken here

arun04072
Posts: 5
Joined: May 2013

Hi, Sorry to hear about your disease. I can understand the stress you must be going through but i really admire  your positive attitute. You have accepted the fact and you have a commendable fighting and positive attitute. Its great. But dont lose hope, there is treatment which can you a new lease to life even with this disease. My uncle was diagnosed with GBM and underwent surgery followed by chemo and radiation but few months later it recurred back practically giving him no chance of survival. He went for a new treatment " SPMF " andbenefitted from it. His symptoms decreased and slowly he came back to normality. Its been almost 4 yrs that he took "SPMF" treatment. He is doing well and going to office. You should also try this treatment as it might help you. You have great attitude so dont lose hope and try this treatment. You can visit the website for more details.

www.sbfhealthcare.com

links :

www.sbfhealthcare.com/research.html

www.sbfhealthcare.com/images/published/asno.pdf

www.sbfhealthcare.com/images/published/17.pdf

www.sbfhealthcare.com/images/published/Carcinogenesis.jpg

Hope it help you...... Good Luck

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