Patient
Joel Kreuziger
Patient
Clyman, WI
Q. How was your meningioma discovered?
A. It was December 2001, I was watching a football game on TV and I went to the refrigerator to get something to eat. Then, just like that, I woke up riding in an ambulance. I quickly found out that I had had a seizure. My mom, dad, and brother witnessed it and called 911. I was kept in the hospital overnight and the next day I had an MRI. To my absolute surprise I was told I had a brain tumor, which I later found out was a grapefruit sized, benign meningioma in my frontal lobe. Other than the seizure, I never had any warning signs like headaches or anything else that now looking back, I would have expected to have had.
Q. How did you source your doctor?
A. In my particular situation, the doctor that discovered my tumor immediately referred me to a neurosurgeon following the results of my MRI. I was 14 at the time so I really didn’t know the significance of what was all happening. At the time I just went along with whatever my parents and the doctors were saying. I am lucky that I have really good parents.
Q. What course of treatment did you undergo?
A. I had a nine-hour surgery to remove the tumor just five days after the seizure on December 7th, 2001. I am blessed that I had the surgeon I did; he has to be one of the best surgeons out there. For surgery I am pretty sure I came in on a Thursday, had surgery on a Friday, and was sent home on a Sunday night. At the time I was 14 and in eighth grade. I only missed eight days of school because it happened near Christmas break; less than a month after surgery I was back in school. My classmates made posters and cards for me while I was gone and gave me a warm welcome back. I was also in basketball at the time and the whole team signed a basketball that they gave to me. I remember at the time, not understanding why I wasn’t allowed to play basketball during the week I was going to have surgery, which sounds pretty silly now.
Q. What was the most difficult part of going through diagnosis, treatment and recovery?
A. The hardest thing for me throughout the whole process was being on Dilantin the nine months that followed my surgery. This anti-seizure medicine took a lot of energy out of me. Each month that the dose was decreased, my energy levels increased. Thankfully, I only had to take this medicine for the first nine months and ever since then I have not been on any medication related to the brain tumor.
Q. What kind of care routine are you currently pursuing? Do you still experience any side effects from diagnosis or treatment?
A. I pretty much live a normal life. The surgery affected my short term memory, which is still something I battle with. I have found ways to overcome it though, so I really can’t complain. I just write things down to I make sure I remember them, but I really should have been doing that before the surgery. So yeah, it forced me to do stuff I should have been doing anyhow. Most people tell me that if I hadn’t told them about my surgery they would have never guessed it.
Q. Who were your caregivers and how did you interact with them?
A. My main caregivers were my parents. They did the most for me. They always made sure to pick up my medicine, took me to my checkups and helped me whenever I struggled with something. Also, my brother and sister helped whenever I needed it. I was always in stable enough condition that I really didn’t have to have anyone look over me all the time. My friends, coaches and teachers were always there for me too.
Q. How was your life changed by this experience?
A. The surgery was definitely a life-changing event. Because at the time I was only 14 years old and still in eighth grade I had no idea of the seriousness of what I had. Now, the craziest thing looking back is that the day of the surgery I never once worried about the surgery or coming out of it all right. My friends, family, and teachers were worried but I, the person who was going through it, really wasn’t too worried. I would get more nervous before taking a test in a class than I did before having surgery. I now believe it was because I was so young and the fact that all these people must have prayed for me. As silly as it sounds now, the only thing that I cared about going into and coming out of surgery was being able to play tackle football my freshman year. Everything I did in my seventh and eighth grade years was geared towards being successful in football. Football was my life and now, reluctantly and with the advice of my parents and my surgeon, I chose not to go out for football. At the time that was so hard to swallow. As much as I wanted to go out I realized that I owed so much of my life to my surgeon and parents that I had better listen to them. Having to give up football made me realize that sports aren’t everything.
Before the surgery school came really easy to me. I was pretty much always the first or second one done with tests and following surgery school didn’t come nearly as easy to me. The first few years after my surgery I was usually one of the last to finish tests and I struggled with homework. It took me until my junior year to realize I had pretty much given up all of my social life, nearly given up sports and wasn’t getting enough sleep to maintain a rigorous class schedule. After switching to a schedule I could handle things have gone much better, now I am towards the middle of the class.
I also struggled initially with sports after surgery and nearly gave up on them. I played basketball my freshman year and really struggled with it to the point that I almost gave up. I just wasn’t the same; I struggled to keep up with the game but the bigger problem was I wasn’t very motivated. I had always been super motivated towards athletics but that season of basketball I just started to feel like sports really weren’t all that important and that I should focus more on academics. I didn’t even go out for a spring sport my freshman year because at the time I didn’t want anything to do with sports. Thankfully, I went back out for cross-country my sophomore year and stuck with both cross-country and track throughout the rest of high school even though there were definitely times when I wondered if I would ever be any good at sports again. Before I knew I had a brain tumor I treated sports as if they were everything and that’s not a good thing to do. Having the tumor and not being able to go out for football worked out to be the best thing that ever happened to me as far as sports. I ended up going out for basketball my freshman year, cross-country all four years and track for three years. In track I ended up being part of a 4×400 relay team that went to state both my junior and senior years. After getting to state my junior year I shifted all my focus into getting back to state the following year and I had finally gained back that fire for athletics which I had before my surgery. As a senior I finished first team, all-conference in cross-country. Then, in track I anchored the 4×400 and the 4×800 relays. With the 4×400 relay we earned a spot on the podium and took home the final medal at state by finishing as the sixth best division 3 team in the state. To get back to state as a senior I had to do it with an injury. Right before our conference meet I developed a stress fracture in my left foot. At one point it got so bad that I could barely walk. This injury gave me even more motivation to get back to state. Two eventful weeks later we did make it back to state. Amazingly our last five races of the year we ran faster than the previous race in each of them. These were also our five fastest times of the year. After the season, the injury took three months to heal up but it was definitely worth it. I am really fortunate that I had such good coaches and teammates in both cross-country and track. I wasn’t good enough to get to state by myself so I can’t thank the guys that ran with me enough for all they have done for me.
Also, in a vote by all the high school students, staff, and coaches, I received the male senior athlete of the year award. This was special to me considering that usually a football player receives it and the fact that so many people had that much respect for me. Surprisingly, since graduating, my cross-country coach renamed the Award to Dedication after me. It’s definitely an odd feeling having an award named after myself. In a way I feel honored by it, but also think that I probably don’t deserve to have an award named after me.
Q. Do you have any advice for people who are at the beginning of this personal journey?
A. My advice to those trying to recover is be willing to accept other people’s help instead of trying to take on more than you can handle – which is what I did. There is no reason to be ashamed of getting help because we’re stronger if we work together as a team rather than trying to do everything as an individual. Another important thing I would advise someone who is having brain tumor surgery is to realize that you will not be exactly the same person. You cannot possibly go through something that major and have the same exact mindset afterwards. Following surgery you start appreciating things more and many things that previously seemed important to you will start becoming less important. Also, it’s good to realize that it’s a long battle through recovery. It’s important to make sure not to rush back into things, give yourself time to heal and be willing to accept support from others. I would also advise someone just diagnosed to find a support group so they can talk to other people that can relate to them.
Q. Knowing what you know now, what would you have done differently, if anything?
A. One thing I would do differently is to actually have done research on meningioma. Until six months ago I had barely done any research on what I had. I think that helped me in the fact that I never dwelled on having a tumor and never felt sorry for myself. The only thing is that I experienced problems which were related to my tumor and caused me to get really upset at myself. For instance, about three years after my surgery I finally admitted I couldn’t keep up with the academic schedule I was taking. I told my parents my short term memory just wasn’t very good. Up until then I would get so upset at myself thinking I wasn’t studying enough even though I was studying so much that I had no life outside of school. I then had my parents set up memory tests for me at the University of Wisconsin Hospital in Madison, where my surgery took place. The tests confirmed I was right and told me the short term memory deficit was a result of the location of my tumor. I had been so hard on myself those three years over something that I didn’t even realize wasn’t my fault. Had I just bothered doing some research on what I had I wouldn’t have been so surprised that my short term memory was affected. I think a lot of that was because I was so young. I also thought I would be back to normal right away and I found out that it’s a long road to recovery. It’s a life-long battle and also is not something that you can just decide to forget about. The main problem was that I put so much pressure on myself to return to the old me and living life the way I had been. So basically if I were to do it again I wouldn’t have been so hard on myself and I would have learned to relax earlier than I did.
All you can do is live and learn. Some of that was just part of going through my teen years. Everybody has to learn a lot of hard lessons through the high school/teen years so sometimes it’s hard for me to distinguish if some of these personal battles and struggles were because of the tumor or just going through the teen years.
Q. How would you assess your quality of life today?
A. Life has been really good for me. I can’t complain. I am not entirely sure what I want to be yet but I do know I want to be able to help other people. Right now I am working on getting more involved with helping other brain tumor survivors. I go in for a check up once a year and I have not had any reoccurrences in over five and half years. Other than some short-term memory problems I have had as normal a life as I could have ever expected. I definitely have more understanding towards anybody that has any type of major health problem. This tumor probably kept me from getting into drinking and partying. I have a great appreciation for things that I wouldn’t have otherwise had. I always went to church before having this tumor but didn’t really believe in god to the extent that I do now.