I have decided to begin a re-occurring series of posts incorporating interviews with family and friends who have interesting stories. Think of a mixture of StoryCorps and This American Life with a lower production value.
I begin with a written interview with a dear friend of mine, Paul. I have known Paul since he was born, as our families’ history stretches back to our fathers’ friendship in high school. The latter half of my childhood was spent in his father’s childhood home, which my family purchased. In adolescence and young adulthood, I drove two generations of Paul’s father’s prized Buick Park Avenues which I can say with confidence were treated with far better care prior to my ownership.
Many of my happy childhood memories are set in our backyards or living rooms at birthdays, holidays, and dinners. The cacophony of our blended families created the pleasant din of conversation and laughter that served as the backdrop to our time together. Paul’s sister was closest to me in age and she has throughout my life been like a second sister to me.
Throughout the years our families celebrated joyful events and inevitably experienced sorrow, but our families’ friendship has always been a comfort and source of support to me. In early 2008, my family and I received the shocking news that Paul had a brain tumor that required immediate surgery. Of course my reaction could only be a mere fraction of what he and his family were feeling at the time. With that background, I present my interview with Paul about his experience.
Paul, let’s start from the beginning. How did your experience with cancer start?
During the summer of 2007, I began experiencing headaches. This was the summer before my senior year; the headaches were attributed to stress. As I entered the school year, the headaches began to get worse and more frequent. They felt like an extremely painful pulsating was happening inside my head. I visited the neurologist and they only gave me medicine for migraines.
Eventually, my mom convinced me to have an MRI. We did the MRI on January 30th 2008. The next day, I returned home from school and my parents were already there. I thought I was in trouble and that they had checked my internet history. They took me to the living room where they told me that I had a brain tumor. The first thing I thought of was that I had to call my friends because we were supposed to see “Meet the Spartans.” He didn’t believe me when I told him, but eventually I convinced him that I wasn’t lying. I had emergency surgery on February 1st where they did a partial resection of the brain tumor.
I had a pilocytic astrocytoma blocking the drainage of spinal fluid in my fourth ventricle. It was probably there for a long time before I presented symptoms. My head is in the 98th percentile in size because my skull continued to grow to accommodate the excess fluid buildup that resulted from the blockage. The tumor ended up being stage 1 which means it was benign. I thought I’d miss a few days and be back in action after a couple weeks but I was wrong.
The surgery completely shot my balance. It was weeks before I could walk with assistance and over a month before I could walk without. I missed about a month and a half of school and had to come back to school in a wheelchair. As cool as this sounds, I felt like everybody treated me differently, and that’s a hard pill to swallow. Through hard work and determination, I was able to graduate on time. I attended my first year of college on time and was able to finish my first year successfully. Immediately following that year, I needed more surgery so they installed a shunt to make the next surgery safer. After a month of draining fluid, I had another major resection in June 2009. They were able to get the entire tumor, but I had a hell of a time recovering from the surgery.
I decided to forgo school in the fall because I didn’t think my body could handle it. It’s a good thing I didn’t because at a follow up appointment in September 2009 they found bleeding on my brain. Apparently, the shunt had over-drained the fluid in my skull, causing air pockets to form which in turn lead to bleeding. To fix this they drilled four holes into my skull and placed drainage tubes in my head to get the blood for a week. Thankfully that worked, and I’ve been slowly getting better ever since.
Prior to discovering you had cancer, what was your experience with it and how did you feel about it? What is your perception of it now?
Prior to my diagnosis, I was sort of indifferent towards cancer. My mother had breast cancer when I was in 5th grade, and I didn’t like it but I’m ashamed to say it didn’t make that much of an impact on me. I was pretty self-centered and always thought about how her cancer would affect me. After that I ignored it pretty much.
Now, I hate it with a fiery passion. I am involved in The American Cancer Society raising money to fight this disease and fund research. I just didn’t realize how big of a deal it was until it happened to me. It disappoints me that it took me having a brain tumor to realize this.
What were your initial thoughts after the diagnosis?
As idiotic as it sounds, I was a little excited. This would make me special. I would miss a few days of school and get to kick it in the hospital. Little did I know how very wrong I was. Now this sounds like the dumbest thinking ever.
You were an active high school senior when the tumor was found. How did your life as a high school student change?
As soon as the tumor was found, I was taken out of school because it required immediate surgery. When I finally did return about a month and a half later, I had to use a wheelchair. As I mentioned earlier people treated me differently. Guys socialize by giving each other shit. Now, I would dish it, but nobody would give me shit back even though that’s what I expected. I was in golf and tennis all my high school years, but I couldn’t do that anymore. I couldn’t do any of the things I would normally do. I was confined to my house due to my limited mobility. My senior year was a failure to me. I didn’t go on dates. I didn’t have fun. I was miserable. I wish I could do it over again.
You had a considerable number of surgeries to remove the tumor from your brain stem. What was the hardest part of going through treatment and recovering?
The hardest part was my lack of mobility. When I went from normal functioning to being confined to a bed, it was horrible. Sometimes you don’t value things until they are gone. Having to lie down all day and rely on others for everything sucks.
What was your biggest hurdle during recovery?
My biggest hurdle during recovery was this tailbone pain I got from lying in bed all day. I was in bed for so long that made it excruciating to sit up. The only comfortable position for me was lying down, but recovery requires movement. The tailbone pain made movement very hard.
What was your biggest success?
My biggest success was regaining my independence after months of depending on my family for everything. When I was able to go get a snack by myself, I thought that was a huge deal.
How did your perspective change throughout the whole process?
I don’t know if it was just part of the whole growing up process, but I appreciate my parents a hell of a lot more now. They are amazing, and I took that for granted before. Along with that I think I became much less self-centered. Whether this was because of my experience or natural maturity, I’ll never know.
Naturally everyone was extremely worried for you during the series of surgeries and offered a lot of encouragement. Were there any sentiments or support from your family and friends that stuck out to you?
While I was in the hospital, I received countless balloons and visitors wishing me well. I guess I never knew just how loved I was. There was a boy from my high school who came and visited me in the hospital. We weren’t even friends. When I asked him why he came to visit me, he said, “It’s no trouble. I just wanted to visit.” I was so impressed that this kid who barely knew me took the time to drive out to Blank Children’s hospital in the middle of winter. I just hope that someday I am that good of a person.
During some of the darkest times in your experience, what kept you motivated? What helped you cope?
My darkest time was when they found that bleeding on my brain in Sept 2009. I thought I was done with surgery, and now they were telling me I had to have another maybe even several more. That was the worst day of my life. I thought, “When will this end?” Luckily, my parents were there for me to hold a strong front. I can imagine that they didn’t like it any more than I did, but they were there for me. Geez, I have good parents.
Is there anything about your experience with cancer that you are grateful for?
I like to think that my experience has made me a better person and that I can now go through life with a little more empathy. This experience also showed me what amazing family and friends I have. They are amazing. I didn’t really have friends abandon me, and that’s good.
What perspective did you gain from your experience with a brain tumor? Do you think it has changed your life course, such as what you want do study or do after graduation?
I don’t “party” as many of my peers do. I often see my cohorts being stupid and engaging in malfeasant behavior. I just realized that some of that nonsense was stupid, so I don’t do it. As for my future goals, I cannot tell you for certain whether or not my journey has affected them. I would love to find a cure for cancer, but I’m just not smart enough.
I’d like to think that I’d be a genius had this not happened to me, but that just leads down a bad path. Honestly, I feel like my current major [Gerontology] does reflect my experience a little bit. I want to work with older adults and make their lives better in whatever capacity I can.
Your humor is dry and sometimes delightfully dark. Do you have a story from the experience that made you laugh?
After my second surgery, I was lying in my bed when a young lady appeared by my bedside. She was roughly my age, and I think she was doing some sort of nursing training. She stuck by my bedside for quite a while talking to me. I thought she was cute, so I was trying to throw some game at her, but it didn’t end up working. It must have looked pretty funny to have a guy try and flirt while being hooked up to tubes and passing out mid conversation.
You have been a great fundraiser for Relay for Life, to benefit the American Cancer Society. Why do you feel compelled to be involved with advocacy and fundraising efforts around fighting cancer?
I signed onto the organization initially to try and make friends. You see it was my first year of college and I was trying so hard to make good friends like my sister had. I was at an organization fair held by UNI when I came across a booth manned by three ladies. After speaking with them for a few minutes and me trying to flirt, I ended up signing up for the organization and getting zero numbers. Yeah, I’m just that smooth. I started going to the meetings and fell in love with the organization. I know and see the impact cancer has on others, and I’m just trying to do my best to fight it.
What kind of support would you give with someone who is newly diagnosed or fighting cancer, or facing a substantial recovery period?
Just stick with it. At times, things are going to be shitty, but just keep fighting. It’s not how many times you get knocked down. It’s how many times you can keep getting up.
I’d like to thank Paul for being my first interviewee for the series. He has continued to wow his family and friends with his recovery despite some very difficult and painful moments. His perseverance has paid off as he will finish school and necessary internships in 2013. He hopes to translate his passion for helping others in to a career in Gerontology, working with the Baby Boomer generation as they retire.
He is cautiously optimistic about the future.