relieved to know that I am not alone.......

Hello,

  I have been reading these posts for over a month now and all I can say is what a difference it would have made in my life had I discovered this website almost a year ago!!  Just knowing that there are other people dealing with this horrible dx. of brain cancer has helped me to handle it better.  My husband of 25 years was dx. with GBM rt. temporal lobe in Nov. 08.  He had surgery later that month, a total resection fortunately, followed by the standard six weeks of radiation and temodar and then was on temodar 23 days off, 5 on.  In August of this year, he had a recurrence and now is on Avastin and CPT-11 and so far his MRI's have shown a reduction in the tumor size which is wonderful news of course!  He is tired alot of the time, has bad Ha's and has alot of pain in his shoulder which we think is from the Avastin, but has been able to still do some of the things he always enjoyed.  I feel for him and know he has just been through the ringer with all of this.  The hardest part for me to deal with though has been the change to his personality.  It has been significant.  He has never been the same since he woke up from the surgery to remove his tumor.  I had no idea he would be so different and to this day I am still somewhat resentful that the doctors never warned me that he might be, they could have at least prepared me.  We have an HMO and they have been pretty worthless as far as offering us any kind of emotional support to help us deal with this.  Any support we have received has been on our own initiative, really just mine, because my husband has always thought he is just fine, which hasn't helped the situation any!  If I didn't have a best friend who has her MSW and is a licensed family therapist I don't know what I would have done, she has helped me tremondously and I owe her big time!!  What has been so hard for me is how different my husband is and I hate to say this but not in a good way!  He gets easily annoyed and irritated, especially with me and our daughter.  We never know what is going to set him off and sometimes I can say the most innocent thing to him and he will turn it around and make me look like the bad guy and I have done nothing wrong!  He has said some really hurtful things to me and I know it is the tumor, not him speaking, but when you have been with someone for such a long time and you are not use to them talking to you like that, it throws you for a loop!  There have been times I felt like he was just trying to stir the pot or pick a fight for no reason and there have been times I have snipped back at him.  But aren't we all just human??  Trying to do the best we can for our loved one while trying to process all that is happening to them and that they really have brain cancer?  I still after a year have a hard time sometimes believing that this has really happened.  We had a happy life together and now it will never be the same, and will more than likely not have a good ending to it at all.  I know every cancer is terrible but this is cancer of your mind, I call it "cancer of you".  I know that everyone is not so affected by it when it comes to a change in their personalitly but for some reason it happened in my husband's and I know it has happened in some of your loved one's too.  I now it is not their fault but it is almost like getting a double dx: cancer and a brain injury at the same time.  I looked up the side effects of a brain injury when this all first started and my husband had 21 out of the 23 symptoms!  Social inappropratiness, impaired self awareness and control, childish behaviour, rigid thinking, aggression, agitation, just to name a few.  Someone I work with said something that I thought was so insightful.  She said the brain is a sacred organ, and it should not be messed around with.  I thought how true!  I know all these measures have been palliative, just buying my husband more time, and I will take it even with his impaired brain. Gone is gone and once that happens I know I will wish I could have him back even as he is now, even if just for a minute.

Well, I have just rattled on here but I feel like I know you all :-) and I just wanted to say your stories have helped me tremondously!!!

With much fondness,

Lee

Lee.

" I know all these measures have been palliative, just buying my husband more time, and I will take it even with his impaired brain. Gone is gone and once that happens I know I will wish I could have him back even as he is now, even if just for a minute."

Lee, that is exactly the way I am trying to live, too. My son has some pretty serious deficits. But I'm loving every day we get to spend together. He hasn't had the personality change although I have heard of that... it's awful. Have you discussed this with his doctor? Seriously, medications can help with this. He might feel a lot better too. And is he still on a fairly good dose of steroids? Those, as well as Keppra, can affect some people more than others.

Keep in touch!

Sarah

mom of Andy 27, dx gbm/pnet 1/09

Lee,

I can hear how hard this is for you (and your daughter) by reading your words. I am sorry that there has been such a dramatic change to your husband's personality. I am sure  you look at him and wonder "where is the man I married?".  You are a wonderful, brave and strong woman.  GBMs suck for sure.  My husband was dx this past February. He is doing well and I feel so blessed.  Each day is a gift as we never know if/when the beast will rear its ugly head, again.  I hope that you are able to take some time for yourself. You deserve it and need to rejuvinate -- very important to take care of you!

Thinking of you, Lee, and keeping you in my prayers.

Holly

Hi Lee,

I've been experiencing some of what you're dealing with but not to the magnitude that you are. 

I remember when my husband first woke up from surgery and the couple of days afterward he was just miserable and took everything out on me which put me in tears frequently.  I was also going through my own hell and having him be so mean to me was really difficult.  I now know that part of what was going on was related to the Decadron and it sucks that the doctors don't warn you ahead of time that this can happen.

My husband since then has also been different but I truly don't believe it's as a result of the tumor directly.  I think it's the emotional impact of the disease on him as opposed to the physcial impact but it's still difficult nonetheless.  He's not the type to talk to anyone about what he's feeling and I always make the snide joke about an elephant being in the room (more to my friends than to him).  I also have begun talking to someone as I need that outlet and don't want to take my troubles to my friends (although in your instance I can see why you could -- who better to talk to then a therapist friend).

I've read other folks postings on how their husbands are fighting this disease and what an inspiration they are and I feel a true disconnect at times because I am not experiencing that feeling.  I don't blame my husband for how he's dealing with it because none of us truly know how we'd be in that situation. 

Brain cancer is truly different than other types for the very reason that you stated.  It's dealing with the essence of the person -- moods, emotions, thoughts, etc.  I love the expression of a sacred organ.  So appropriate!

Please know you are not alone.  This journey does suck at times but I'm grateful that I've met so many wonderful people along the way and know that I am also not alone.

Jennifer

Hello Lee,

I am sorry to hear about your husband and everything your family is going through.

The love of my life for 25 years is battling this GBM monster too. His is inoperable so he did SRS radiation and chemo. He has some cognitive issues with memory like many have. I understand what you are talking about with the personality changes. Jay has experienced some of those you mentioned recently. I was not prepared, it was absolutely heartbreaking. On a positive note there are medications that can help control these issues. We have in home hospice and our nurse has been wonderful ordering different medications to help. I have noticed a positive difference. I would suggest talking to his doctor about this. Also, some medications can cause some of these changes, such as Decadron, which can cause agitation. If he is on this you may want to discuss with the doctor about gradually tapering down the dose if possible, we have done this as well.

You're right you are not alone, this is a wonderful site and we try to support and help each other since we are all fighting the same battle.

Wishing you the best.

Take care,

Lori

Thank you for all your kind words and encouragement :-)  Things have been better lately, more laughter and silliness in the home, which is always how it use to be.  Good medicine for all! 

I do try and take care of myself, exercise when I can, go out for lunch with a friend,etc.  Know that I am fortunate that I have been able to still do that.

Just cherishing this time with the wonderful guy that I married and hoping for lots more of it.

Thank you again for your uplifting words, I think you are all so insightful and very strong women!!

Lee