A: Years ago, my first diagnosis was an eight centimeter brain tumor which was removed with surgery. It was pretty big and it shut me down physically. I’m a personal trainer, so it was really important for me to regain my physical stature. Two years later the tumor came back—this time it was around four centimeters. In the time period between the two tumors, I got new health insurance, and when I called my surgeon from my first surgery about the second tumor, his response to me was “we don’t deal with this type of insurance.” Then, by some miracle, there was a third party individual who worked at the University of California Los Angeles (UCLA) who found out what was going on with me. She relayed my story to Dr. Isaac Yang. I had never met either of them, but Dr. Yang called me and said, “I heard you have a meningioma, which is my specialty, so why don’t you come on in.” I said, “That’s great, but I have to tell you about the insurance,” and he said “I don’t care; we need to get into your head, so come on in.”
When I met with Dr. Yang, we went over my MRI and he said, “We need to go back in,” and he did the following week. Since I had already been through it, I knew what they were going to do, and I knew what I had to do to regain myself. I was told by Dr. Yang how we were going do the surgery and that there would be radiation afterwards because my tumor is a grade 2-Atypical: usually slow growing, meaning it could possibly come back. Well, it certainly did come back! And, that means it probably will again. That’s why Dr. Yang was adamant about following up with radiation. That was pretty well explained to me. Everything went as was explained.
A: Yes, I was treated on a linac [linear accelerator] and I had 39 sessions of treatment.
A: Yes, that information was given to me before I went into the hospital. Everything was pretty well explained.
A: I did a lot of research after my first surgery to learn more about what I had and how it rated in our country. What really is a meningioma? There are 500,000 of us out there, and it pretty much affects women, but what’s interesting is that once I read that, most of the people that I encountered while volunteering at UCLA hospital were men. They say the percentage leans mostly towards female but I was finding that to be a bit different. But who am I with numbers?
A: Absolutely. The first time I didn’t know what was going on. I let it go to a point where I couldn’t process anything. If it was a conversation, if it was my job, I went in about 15 different directions and sometimes people couldn’t understand what I was saying. Of course I didn’t know that. I guess as a male, you think you’ve got it covered, but really I didn’t. I admit that!
A: I went all over, but mostly on the Internet. I searched for meningioma, found a group called “meningioma mommas” which is actually a cool website because even though it was geared towards women, everything they were discussing related to me. Anytime any of my friends came across something about the brain or meningioma they would link it to me and I would check it out.
A: Boy, that goes back a long way. It started with migraines. But I played a lot of football throughout college in the late 70s, and things were a lot different back then. I can recall at least five or six concussions. You just kept playing. It’s not like today. So when I had a migraine that was no big deal to me: I always had headaches. Another 800-1000 mg of pain reliever per day and that took care of things and I moved on. So that should have been a symptom that I recognized. Then I lost my balance. I was working with people trying to keep them in balance, and I was falling all over the place. And then lastly, I wasn’t processing conversation. I would have a conversation, would hear what the person was saying, but not understand what they were saying. That was the point when I knew I had to do something. At the time, I dating a girl, and she saw how my personality was changing due to this tumor in my head, and she said, “We are going to the hospital” and I said no. She got six inches from my face and said again, “We are going to the hospital” and that was really the last thing that I remember. I’m glad there was someone in my life at that time that made me do what I needed to do.
Going into the second surgery, the headaches were back. My balance was good, but there were some symptoms that every once in a while would remind me of the first time around. That’s why I just feel like I’m a blessed person because someone reached out at the hospital and pointed me to Dr. Yang. And, here I am!
A: My surgery was done on the left side of my head through the ear, so I did lose about 50% of my hearing in my left ear, although some may have come back. Then I started radiation and it went fine but I had to take an anti-seizure medication, which can affect the liver, but I needed to take it. That medication is exhausting– I walked around in an exhausted state. That would be fine, but my seizures started coming (which isn’t that uncommon after radiation) they didn’t cause me to black out, I just couldn’t talk. The function from my brain to my mouth wasn’t working. I was fully functional, but I couldn’t pronounce words and I could only nod my head. The seizures started coming on rather regularly. First they lasted minutes, then hours, and then I had one for three days where I couldn’t talk! But I was still fully functioning. I drove myself out to the hospital and took my case work and papers about myself. Since I couldn’t describe it to them, I showed them my UCLA patient number and such. And then they upped my medication and we’ve been pretty good since. Every once in a while, I would get hit with that symptom for a minute or so, but that hasn’t happened for eight or nine months now.
A: That was simple. It only took about five to seven minutes for each session. Before I went in for my first one, they made a plastic facemask that was fitted to my face. What I found out is that when they attach that mask on the treatment table, you are really tied down. You are breathing and that’s about it. They need you to be immobile and that is certainly what happens. But, that didn’t bother me.
And the people there, I could get on a soapbox and rave about the people there. They were so terrific, asking what kind of music I want, if I want it loud or soft—they made everything so comfortable. So for me, it was kind of like, “Woohoo, I get to go to radiation!” There was no negative for me. Since it was such a short procedure, I didn’t treat it any other way than a part of my regular day and it’s an item that I have to do.
A: No. Maybe it caused a little fatigue, but that’s hard for me to say because I was still on that medication that makes you tired. There was a nap involved every day.
A: Well, it had to remain. I had one client express that she was concerned about my radiation treatments and asked if she needed to train with someone else. Luckily, we never had a problem, and my professional life was not affected whatsoever. As a matter of fact, when I feel the best is when I train myself, so that never stops. I made charts for myself on where I wanted to be and what I had to do to get there. That never has or will leave my life.
From a personal standpoint, I was affected to a certain degree. I had to find out if there was anything that I was doing to cause the seizures, especially right after radiation. I started to know the feeling, and I had to fight it in ways that I knew how. Let’s go back to my speech: I have to really think about my speech. It’s not like I can just talk without thinking. That’s just how it is and that affects me personally with other people. I would go to a coffee shop where I knew people and that would force me to talk. If I have a day when I’m not feeling that great, and it feels like a symptom of a seizure, I actually make myself do what I don’t really want to do, which is to go back to say, a coffee shop, and TALK to people, that would be my “recovery”, so to speak. . When those situations come around it does affect me. I think to myself, “Can I really come clean with whomever I am talking to? Do they know? Do they not know?” But it really came to the point of, “Do I even care?” because here is my story: I used to have a brain tumor, maybe I can’t talk the way I used to but this is me. So if you can handle me, that’s great, and if you can’t that’s great too. It’s about adapting and accepting.
A: I can’t say enough about support. First time around I thought, “I’m okay!” I blame that on being a guy. That’s when Dr. Yang brought me around to how much support means. It rang a bell inside me and made me realize that support is everything. Everyone needs to find a team, whether it’s family, friends, or somewhere else, it doesn’t matter. Just make sure you can converse about it. Groups are great because you know others have experienced what you have, so you can talk frankly with them.
I have also found that when someone has a brain tumor, you have to keep that brain engaged when you are out of the hospital. I had a Nintendo-like game with a math related game that tested my knowledge with a timer so I could see if my response time was increasing or decreasing. Engage your brain with something such as games or reading—anything that makes that brain process. If you don’t use it, you lose it. Try to learn something every day.
I have a bald head, so it’s easy to see I have a scar. It freaks some people out. Don’t let that get you down, please. It doesn’t matter. If someone takes a different attitude towards it, just remember that’s not you. Always stay active, maintain a healthy diet, and know what your body can do. Have and embrace your story, don’t deprive yourself of that.
To learn more about Scott and his battle with brain tumors, visit his blog everythingisgoingtobealright.com. Scott is also writing a book BRAIN MATTER(S), available December 2015.