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Comment by Beth Rosenthal on August 31, 2011 at 9:56pm

Hi Tom. I still feel alone. Yes, it is wonderful to know that there are survivors to connect with. It's just that technology in 1985 was so different and I was so young, so I have many physical effects  that many don't. Plus I can't find anyone who was chronically sick for their childhood, like me. My education, career, emotional growth, etc. were affected. I will never carry a child and give birth b/c the remaining tumor could grow from the moving blood supply. It's not like I was already married w/ kids, had a job, friends, etc. It's a frustruating time for me. But even sharing that is a step in the right direction.

Comment by Beth Rosenthal on August 31, 2011 at 9:03pm

I, too, have difficulty focusing. I can focus if I'm very interested. Otherwise I can't fully focus. I fidget also. However, I was nervous before I was diagnosed. So it's hard to decipher what is from the tumor/treatment.

Comment by Linda Wilson on August 31, 2011 at 12:44pm

my depression / anxiety does hiner my ability to focus.  I can't seperate distractions everything around me I hear. (from the frig running to the wind blowing the leaves out side) As for meds trust your Doctor they know meds and you.  I wish your the best of luck.

Comment by Becky on August 31, 2011 at 1:31am

Hey all. I was wondering if your depression/anxiety makes it difficult to concentrate and/or focus. I know that I'm only a few days into school so it will take some time to adjust, but I just can't seem to comprehend anything I've been given to read. I came close to having a melt down in the financial aid office today because they put a hold on my account so I couldn't register for a class. I know my "threshold" is lower when it comes to stressful situations, but this was just so frustrating! It took all I had to not melt down right at the financial counselor's desk! 

 

I was thinking again about the possibility of maybe going back on an anti-depressant. I was doing a Google search and found that one medicine - Bupropion - can be used both as an anti-depressant and for ADD. I know that I don't have ADD, but I was thinking maybe it would help with my focus issues. I also am one of those people who is always fidgeting. Has anyone heard about this medicine? One site mentioned that you shouldn't take it if you have seizure problems. I wonder why?

Comment by maggie brier on August 21, 2011 at 11:51am

Hi Becky --

I am sorry you  are so anxious as well!  I think that sometimes, for me, it gets really difficult to separate what is "normal" anxiety from what is brain tumor related anxiety.  I remember vividly how anxious I was every year before going back to college (pre-brain tumor) and also the anxiety I felt before going back to grad school (post-brain tumor).   The reasons were probably different, but the anxiety was the same.  I really felt that I was no longer smart when I went to grad-school (and post-grad school), and that I had fooled someone to get in each time.  And, in the end, it really didn't make a difference.

 

I just got back from vacationing with my whole extended family.  My sister has 3 daughters, one who will be a senior in college, one who will be a senior in high school and the youngest who will be finishing middle school.  My two daughters are 10 and 5.  The anxiety that all 5 girls had was so palpable, that it was making me anxious and ready to come home. So all I am trying to say is, starting school (or anything new ) tends to make everyone nervous (or, to quote Sigmund Freud, "Sometimes a cigar is just a cigar.")  I don"t know how you feel about this, but if you are still feeling anxious in a couple of weeks, your school should have a therapist who might be helpful...

 

About the weight gain, my neurologist says that just about every anti-seizure medication causes weight gain, so you might want to check that with your doctor on that one.  There was one medication that actually helped me lose weight  (sorry I don't remember the name), but it gave me language problems.  

 

I hope you have a great year at school, and that everything goes really well for you!!

Comment by Beth Rosenthal on August 21, 2011 at 11:24am

Hi Becky.  I'm glad that you had fun on your trip. I suffer from anxiety. I never had it when my pain wasn't under control, but I have it now. It's scary when you've been sick and have been in the "survival mode", like we discussed earlier. And now you're living again. Because I didn't know myself that well when my tumor was diagnosed (age 11), I thought everything was an emergency after my treatment. I called my mom from school one time because I had a hangnail. Another time I fell and hurt my knee. I thought I broke my bone and would never recover. Obviously, I've changed and grown over the years. Moving forward is very scary when you can't be sure it won't come back and ruin life again. Finally at 28 I started l living. Now I try not to worry, but I wonder will menopause change my nerve pain or make my tumor grow. These are serious issues that we deal with.

Make sure you take care of yourself. Try deep breathing exersizes if you want or mentally doing something that might help you. Also, tell your parents that their questions are upsetting you. Mention that you know it is out of love, but it is making you focus on your anxiety.

Anyway, good luck! Keep us posted!

Comment by Kim Repsha on August 21, 2011 at 9:43am

Hi Becky!  I'm sorry you are anxious!  I was afraid to go back to work too!  But when you go back to school the social interaction and the work will keep you occupied so you'll forget about the anxiety and you will see a decrease in the symptoms.  Going back to work helped for me!!  Good luck and have fun!! =)

Comment by Becky on August 21, 2011 at 1:00am

I'm starting to get anxious again. I got home from DC on Saturday. I was able to go camping Monday-Wednesday, went to San Fran on Thursday, a friend had a going away party Friday, and I spent the day at my Grandma's today. Although these have all been fun things, I go back to school on Thursday! And I haven't even unpacked from DC let alone started packing for school! Everything is happening way too fast.

 

I've also noticed that for about three weeks now, my eyes have been red and blood shot. I have had an increase in headaches, so I wonder if the two are related? Especially considering that I do not have any eye pain or itchiness. What's also been kind of frustrating is that I'm starting to gain weight, and I'm not sure why. I know I have hormone problems because of my BT location, but weight-gain has never been a problem. It's not like I've gained a ton - I'm probably getting closer to a healthier weight - but I haven't increased my calorie intake, which is a tad bit worrisome to me. I will probably be seeing my neuro-endo sometime in September, but it's just so frustrating. It's just one more thing that is now out of my control... Ugh!

 

I think the worst part is that my anxiety, which I didn't think was a problem, is becoming noticeable to my family. I didn't really think I was anxious, but I guess I've been more quiet. My family keeps asking is I'm ok, which just draws attention to the fact that I don't feel like interacting too much. Every time they ask if I'm ok, I start to feel less and less ok. I want to yell "I'm fine just leave me alone!" before I burst into tears.  

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.

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