It's Just Benign: Connecting Benign Brain Tumor Survivors Everywhere
Ah well.
My NS said it didn't. I'll most likely have this "squatter" for the rest of my life, and it'll probably just keep regrowing reeeeaaally slowly. I might have another surgery later in life, or more radiation or chemo. It could be worse, but I was really hoping it'd leave.
I had to leave my last year of high school, and I have to learn to drive again before I start college (hopefully) this fall.
It's very hard to have people tell you "at least it isnt cancer" and not be angry, but it's okay. They think it isn't a struggle, but I'm not angry with them. I don't want them to know what it's like. Mine won't go away.
My biggest fear is this will become malignant, or I'll have to go on dexamethasone again. (I lost 30 pounds, I don't want to put it back on.) Can I do the things I wanted to? Should I risk it, knowing I could get bad again, or worse?
Bottom line is, whatever happens, I'll keep going.
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Comment by Ann Manzi on February 27, 2013 at 3:06pm -
Hanna, Life sure has a way of throwing us a curve ball. Mine was a complete surprise with an emergency craniotomy and thirty days of radiation. I always wonder why, why now; but it I am not in control. Funny, every night I pray for people I know and those that need prayers that I have never met. I always close with make this bt go away.... The what ifs can linger, but do what you can to get out there and get ready for college... remember how brave you really are. ann manzi
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Comment by John on February 18, 2013 at 9:20pm -
Balancing life post-DX is definitely one of the puzzles we all have to figure out. I don't think there's a right answer for everyone and might just depend on our specific situations that we find ourselves in. I try to have the same framework of the whatever happens, just keep going as well.
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Comment by Peggy Orr on February 18, 2013 at 7:28pm
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Hi Hanna, I'm new to this site, but I wanted to wish you well. You have a very good attitude. I too, have another "squatter" next to my brain stem. This is #3. I don't know about this one, but the others have not been malignant. Is yours a meningioma? That is what mine are, and usually they are not malignant. I know what you mean about "at least it isn't cancer". I find that irritating also. I've also heard, at least it's benign. I don't think they would like to have a brain tumor, because at the very least it's hard to deal with mentally, plus some physical changed that can happen. Hopefully you can move on with life, and not miss a minute of it. That is what I have done and I think it really helps. I say enjoy, and have the faith and positive attitude that things will all work out for the best. Take care, love,peg
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Comment by Beth Rosenthal on February 16, 2013 at 11:42pm -
Hi Hanna. I'm sorry about this news. What I've learned from surviving over 25 yrs. post diagnosis is that life just keeps going. Everyone's life moves forward no matter if you're sad, angry, depressed, or happy and soaking in everything life has to offer. I've spent most of my life being angry with life, mad at people, etc. and I can tell you it's no way to live. What I'd do, in your situation is this... continue your life plans of college or whatever your goals are and try to remain optimistic and positive about your future. As a childhood survivor, and as a woman who understands that benign brain tumors are a neglected and misunderstood diagnosis, I think you'd be doing a huge service is you could educate those around you. When they say you're lucky, just explain that benign can turn into a malignant tumor, certain tumors regrow, and benign BTs can kill if in particular locations. I've only started voicing how serious benign BTs are since I started IJB 5 yrs. ago and it's very empowering.
But that's your decision. Regardless, really try to remain focused on your future and do what makes you happy.
© 2013 Created by Beth Rosenthal.
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