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Comment by Beth Rosenthal on June 22, 2011 at 9:32am

Becky- I completely understand not wanting to go on meeds. I've tried many, but for my trigeminal neuralgia pain. I'm on Lexapro for anxiety. It helps. Some days I'd like to up it, other days I want off all meds. But I will continue taking it because my life is finally moving in the right direction and I don't want to rock the boat.

Melissa- I have felt isolated and alone for decades. I was diagnosed in 1986 and things were very different. I now get that I'm lucky to be alive. My tumor, my physical pain and my left sided-weakness and limited hearing, have made it very difficult to not only have an excellent education and career, but I barely know me. I am a brain tumor survivor. That's all I really know about myself. I'm on disability, work p/t, and spend all my free time doing IJB work. I'm not a normal 37 yr. old. It's hard for me to connect with some people because I feel so different. 

All I can say is if you keep getting support on the website and help to keep it around, some day education about benign BTs will be standard. And education and compassion for quality if life issues that we have will be understood. I plan on having IJB as known as the Komen Foundation. Some day we'll feel more normal, at least I plan to. I hope we all will.

Comment by Becky on June 21, 2011 at 11:13pm

Hey so things haven't been going so well for me in the anxiety/depression department. My neuro-onco wants to refer me to a psychiatrist to possibly be put on an anti-depressant. I was on Celexa about 6 months ago for 1 month but discontinued because it made my anxiety worse. Any suggestions on what meds have worked well for others with minimal side effects? I really don't want to do this, but I know that in the long run, it will probably be better for me and my overall well being. To be perfectly honest, being told that I needed to see a psychiatrist kind of threw me; I don't associate that word with a good connotation. I was going to therapy for a while this past year, but that was on my own. I'm a little nervous and really don't want to do this, but I can't keep going living the way I am right now.

Comment by Mellissa Lynnette Rice on June 20, 2011 at 8:41pm

Thanks for having me ya'll.  I have felt really alone for a very long time.  Friends and family struggle with watching me go thru treatment, and I don't want to add to their concern.  I have suffered from depression since my initial diagnosis 15 years ago.  I want to be normal, be in a realationship, look forward to a future!  Some days I am okay or maybe I just don't think about it.  I had my second reoccurance about two months ago, just before I finally finished my last full semester of college.  I had goals for the future to get a job, move to a new city, etc. Well, I have not been able to work and felt it necessary to stay in a community that has excellent doctors and hospitals.  Throughout all of this I got a divorce just before the first diagnosis and have stayed single since so I go thru all this alone when Im at home.  This leaves for alot of time to cry.   

Comment by alice jena on June 1, 2011 at 12:08pm

Dear Bonnie, Thank you for your wise and thoughtful comment.   As it has been said, one has to walk in another person's moccasins to understand that person's life.

dear Eamon, I am able to feel and express that the divorce (or death) of a marriage is worse than experiencing Brain surgery (or even a fractured ankle; which in my experience, is much more painful.)   The Brain surgery, itself, lasts as long as the procedure takes.  The act of becoming divorced (and the total failure of a marriage that the divorce means) does not ever become a final situation.  Whatever the marriage was, or whatever happened during the marriage, is part of the couples lives until death, mercifully, ends that misery.  Even after the death of the couple, the relations, and all who were effected during their lives, are haunted by the marriage's unpleasant ending.  

 

Love is everything in this world.  To end a marriage means someone destroys a "once" loving life of togetherness.  

 

I pray for all to experience true love ---- and keep true love.    A broken heart can never be mended my the medical science of this planet.

 

Best wishes for all to have strength, and good health -- and yes, true love.  \

 

    Love and peace, alice

Comment by Bonnie on June 1, 2011 at 8:30am

Alice and everyone.....I am sorry for what you have been going through as a result of your BTs, and the other challenges that have come up in your lives. Each of us is affected in individual ways, and we cope in individual ways...whether to our BTs or to the other challenges in our lives.  

 

I hope that everyone feels safe to share their concerns here.  We need to remember each person's challenges and concerns are theirs and have nothing to do with those of us reading about them.  While we have commonality re a BT....how they affect our lives varies.

 

Alice....your comment reflects you and what you are experiencing and is valid.

 

Eamon....I am sorry that Alice's comment affected you so personally and I hope you are able to accept it for what it is....a statement about Alice and what she is going through.  I am sorry for the pain and suffering you are going through.

 

I have not said very much about how my BT has and is affecting me because my journey has been very different from what I have been reading here and on other BT forums.  

 

I haven't been on this site in a while, but know I continue to keep you all in my prayers....for healing, strength, hope, and peace.

 

 

Comment by Becky on May 25, 2011 at 11:09pm

Ok, so I'm trying very hard right now to acknowledge what I'm feeling, but I am having a very hard time handling it. I found out two days ago that I got an internship in Washington, DC. Very short notice - I leave in 11 days for ten weeks. I am very excited about this opportunity, but also very nervous. I have not gone more than two months without some sort of health issue coming up. I know that things will get better with time, but right now I feel like a ticking bomb. It's almost like I am waiting for the health issue to pop up that is going to make me not be able to go to DC or make me have to leave early.

 

I think that all of this BT stuff has helped me to handle some aspects of the current situation. For example, pre-BT, I probably would have had a very hard time handling how quickly my summer is changing and how short of notice I was given to prepare for this. But since BT, so many of my plans have been changed so I've learned to be flexible. But this feeling of something bad happening is making me quite nervous to go so far away from my home and my doctors.

 

The only thing that is making me feel relatively ok is that I saw a new opthamologist today and the appointment went great! He was very nice, answered all of my questions, and even let me be a part of picking out what strength of prism I felt made my vision the best it could be. I feel like things are looking up, so I hope they continue to do so. My main question: how do you keep from feeling like a "ticking bomb?" I know that because my BT journey is still so recently started, I will be more nervous, but I just don't know how to handle it. 

Comment by Ian Kraft on May 23, 2011 at 2:39pm

I like that analogy and I'm perhaps the person who tried to defy it.  I had an astrocytoma over 8 years ago and after I got out of the hospital, I didn't really want to talk about it.  I saw a therapist for a while, but she didn't help me at all and ever since, I've just been living with that in my past.  It hasn't been  until recently that I've started to suffer from bouts of post-traumatic stress disorder and survivor's guilt.  I've been faking "normal" for quite a long time and have really had a hard time relating to people, so I guess that this is what I get.

Comment by Becky on May 18, 2011 at 2:30pm

Thanks for the replies. It makes me feel better knowing that other people have their "moments" as well. I would never wish this on anyone, but it's nice to be able to relate to others. And Beth, you are so right - "You stop living and learning when you are in survival mode." So true! It's so hard to act "normal" when you are always waiting for a test result, or experiencing a symptoms you know isn't right or good.

 

Although I've started to accept my new "normal" I still have times where I am just so angry and frustrated! But I've definitely gotten better the past few months. I was seeing a therapist at my school on a weekly basis for the majority of the school year, which was extremely helpful. I think the most important thing I've learned is that emotions are flowing - they come and go and are all important to actually feel, whether they are good or bad. My therapist always used this analogy that if we hold our emotions in, it's like trying to hold a ball under water. The longer and deeper you push it down, the harder it gets and when you eventually can't hold it any longer, the splash is huge! It you just let the ball do it's thing, when it pops up, it isn't as bad of a splash as before. I hope that makes sense. I've been trying to practice that, but it is so easier said than done!

Comment by Beth Rosenthal on May 15, 2011 at 8:37pm

Hi Becky. It's hard for a child to emotionally grow when diagnosed with an illness. I've spent most of my life in hospitals. I was there for surgury and/or radiation. Once my trigeminal neuralgia pain started I could barely hang on. I didn't kill myself only because my mom would be emotionally crippled.  For those 12 years, age 16-28, I couldn't grow. I was seriously medicated with meds that didn't work, in pain, worried when the pain would return, etc, When you're sick you only care about getting better. 

I've grown up a lot in the 10 years since I've been on pain treatment. It's not entirely the tumors fault, there are other factors, but instead of acting like a 28 yr. old in 2002 I acted like a 22 year old. I was never able to really learn who I was, my beliefs, etc. So I'm trying to make up for lost time.

You stop living and learning when you're in survival mode. I hope that makes sense.

Comment by Kim Repsha on May 15, 2011 at 7:55pm

Hi All.  My surgery was November 18th to remove a lemon size astrocytoma.  Because my nuerosurgeon couldn't get it all, I had radiation for 6 weeks.  I cant feel the right side of my face and throat, and my right side doesnt work great! My "telling" MRI will be in June.  I am NOT looking forward to it!!  I am trying to keep my head up, but it is hard not to be depressed sometimes!!

@Becky.  Wow, this is alot for me nevermind you being so young.  My daughter's are 20 and 24 and I can't imagine either of them going through what we went through!  You are so strong!  I am 42 years old and I dont have surgery without "Mrs. Pink," my pink care bear!!  My kids carry their bears too...even to college. LOL.  So never feel silly!!  You have your whole life ahead of you!!  Enjoy every minute!!

@Alice-I've been divorced and had a brain tumor.  Divorce sucks, but it gets better.  My ex didnt have any contact with my kids for 9 year.  Then he finally reached out to them and killed himself 6 months later.  You will survive and be a better person for it!!  I am now remarried, smarter this time, and happy.  Hang in there!!  You can do it!!

@Claire-I have panic attacks too, and so do my (adult) children.  I am the only parent they have left! I am hoping the panic attacks stop when I have my June MRI (6+ months post op).  Let's hope so.  They are often worse than the tumor.  I must say that I do have them less when I lay off the caffeine and sugar.  Hope this helps.  I'll tell you what happens in June!!

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