A Cathartic Tale

Hi, it's Trevor and I am going to be introducing this tale, which Brenda will go on to tell, in her own words. A lot has been going on in Brenda's life and there are some events and experiences, that she will be sharing. Some of what she will be sharing is very difficult, but as the word cathartic means, as an adjective, "Open expression of emotions." That is what you will see here folks. After she has written this, I hope you will still have her back. I know the people who do. This blog post is actually coming out of a recent broadcast of Brain Tumor Talk: Worldwide Radio Show. It was time to finally bring this all out in the open. Frontal Lobe Syndrome is a real thing and can be really scary, when you have no idea what is going on. With that, I will let Brenda share from her heart.


Thank you, Trevor. As some of you know, I had a meningioma brain tumor removed on September 8, 2008. The location was the right frontal lobe, and this is my reason, for finally bringing some events out in the open. I know that some of you will be able to relate and even breathe a sigh of relief, that you are not the only one going through this. I hope that is true. For some, it is going to be very hard for you to read some of this, as you have not been through this type of trauma. Yes, having had brain surgery is trauma. The right frontal lobe is considered the high functioning part or the 'White House' of the brain ...so it is very important. Having had a brain tumor in this location, can cause someone to cry or become angry, more easily. I had this experience about a month after I had had my craniotomy and it scared me to death. I had just finished seeing my neurosurgeon for my first post-op visit and was being sent for another CT. When they were trying to inject the dye, something they were having difficulty with, I burst into tears. The tech felt so bad and thought she was hurting me. That is not why I was crying. I started sobbing and I realized at that very moment, that this whole experience of having had a brain tumor removed, had finally hit me. She handed me a box of tissues, and I just kept crying.


Another thing, I didn't even realize that I had actually had a brain tumor, as it was only referred to as a mass, tumor or meningioma, so imagine my confusion, when I finally came to that realization. That is another thing about this new normal and yes, that is what I call it. I get confused very easily. I sometimes get details mixed up and it has caused, some people to get annoyed with me. That is why when something is explained to me, it takes me a little bit longer to grasp it. Hence, that is why I refer to this as trauma or an injury to my brain. We refer to this in the brain tumor community as... "Brain Surgery = Brain Injury" I believe it to be true.


The thing that has hurt the most on this journey is that some people who had been friends, for years and I use the word had, because they are no longer a part of my life, because they simply could not accept my new normal. I was actually told in a room full of brain tumor survivors, by someone who I had stood by for years, that I had an ugly personality. They went on to say that I used to be so happy go lucky. Mind you, my mother was in a nursing home dying and I was sporting an air cast, because I had a torn tendon in my right ankle. I also got very sick during our flight and was very disorientated after. So excuse me, if I wasn't all happy at that moment. This was supposed to be a fun weekend for me, to be able to be with other brain tumor survivors, but instead it ended up being a horrible experience. I wanted to just get out of my chair and leave the room, but since it was a meet and greet, I just got up and went to mingle at another table. Of course I have changed, but I really didn't realize that until I started to take notes of what my life was like, one year prior to having this brain tumor discovered. My father was losing his battle with Alzheimer's and I was not handling life very well at all. I was in my doctor's office and they took my blood pressure and it was sky high, which was very concerning to my doctor and I burst into tears. Something I do not do in public very often. I started to talk to my nurse and told her this had been happening. It was decided that I needed to start on something that would help. Let's just say, that it took away all of my ability to feel. I didn't shed one tear at my father's funeral. I am sure some thought, that I just didn't care. I was that numb. I eventually got off of the medication after six months, because too many things were going wrong. My neurologist told me if I stopped taking the medication, I would start to feel bad again, but he also told me that having a head CT that day, would probably not be in my best interest. Look where that got me? That was one year prior to having this brain tumor discovered.


My head pain just kept getting worse the next year. Yes, I had experienced prior head trauma and never did anything about it. I would not recommend this to anyone. I asked for a CT and I was told that if they find nothing, we would be done. This statement still angers me, but I have to tell you that I did finally make peace with the doctor who said it. I forgave him, but I will never forget it. There is a big difference.


As you know they found something on that CT, which I was sure they would, just not a brain tumor, which was confirmed by an MRI.


One of the biggest things that has occurred on this journey is the fact that I feel more deeply or have more empathy. It can be a blessing or a curse. If I see someone I care about being wronged, I will step in and do something about it. I have been told that I have always been that way. I know that it has even become much more of a stronger emotion.


I have also been told that I am negative and nothing is ever good enough for me. Again, the person who made this statement is out of my life as well. I also sat and cried with this person many times, for all the things they went through. I had to listen to the same thing over and over again, because they thought they had to tell everyone, they came in contact with. It became very wearing and this was before my BT diagnosis. I also have lived with RA for over twenty-four years, so I was dealing with a lot already. I even had to tell them once early on in my diagnosis, that I was the only one who would decide who to tell, as I was still trying to get used to living with RA. Clearly, that just went over their head, because the excuse was that it could help someone else. I wanted to get myself on some kind of path of semblance, before I could even think of helping someone else.


I face a lot of things alone. It's just easier that way. I have reached out to a few people, who I can trust, but for a long time, I had serious trust issues. I had thought that I finally found someone, who I could confide in, only to find out that they were telling all of my issues to others. That is not cool.


I know we all have problems, but it seems like it is okay for everyone else to vent and when I did or even do now, some will jump down my throat. That makes for not wanting to share with anyone.


Yesterday, was probably one the worst days of my life. The day before was not that great either. I have been facing isolation and exclusion. It seems to happen, when I want to be a part of something.


I work very hard at trying to fit in. I don't seem to very much in the chronic illness community. I am the one who is still on their first biologic and has not failed any others. I did however, fail many medicines prior to that. It took me almost 10 years to find the right medicine to help. The damage has already been done to my hands. My first 10 years of living with RA was pure HELL at times and all this time, I was walking around with a brain tumor.


When my sister passed away, my father dying of Alzheimers, my high blood pressure, my short temper, all the while not knowing that I was walking around with a brain tumor.


One of the first visits I had with my new PCP after I had had my brain tumor removed. He asked me if I was depressed? I said no, but that I can cry for no reason. He told me that was perfectly normal and eventually even got me off of my blood pressure medication, because he believes the BT had been the cause. It made sense, because I had had a lot of nose bleeds as well prior, that I found out after, could actually be a sign of a brain tumor. I said could.


I am very aware of my frontal lobe syndrome issues. It just hurts when I put my whole heart and soul into something and it gets ignored or barely even gets a mention. I work hard and as a result of having had this brain tumor and also living with RA, I have very little energy at times. I do manage to work full-time and I am very proud of that.


I still deal with constant nausea and motion issues. Yesterday, was one of those days. I spend a good part of it in bed and turned all the phones off. I didn't have a vertigo attack, for which I was thankful, but it was still a rough day. It's on those days, that I just want to stay away from people, because anything I say or do, will probably end up not being good.


I get real disorientated very easily, as my sense of direction is pretty much toast since having had brain surgery. If you talk too fast or loud during a conversation, it can easily get on my nerves. High pitched noises almost send me to the ceiling. I feel much more and I am not going to apologize for that, ever!


I care about others and want to make a difference. I need to be allowed to do it in my own way. What may be easy and a snap to you, takes me more time to figure out, as some of my comprehension skills have been affected. I did however, become creative and writing has become a big part of that. I haven't been doing so much lately, but I believe that is going to change.


All I ask is that you give me a little understanding. I am doing the best I can. I cannot help that this happened to me, but I am trying to turn it into a positive. Hope, is what I cling to every day. Without it, I think I would have given up long ago.


I don't have family members close by, so I really have to face all of this alone at times. Holidays are not easy by any means. I want to thank those of you, who have allowed me to vent and share my heart with you, this year. I only hope in the future, that I can do something for you.


This was very difficult to write, but I hope it will give you a sense and know, that frontal lobe syndrome is real. I am still Brenda, just different, when it comes to coping skills.