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READ MOREPublished on July 13, 2023 in Glioblastoma, Survivor, Event Participant, Stories
Guest Author: By Taylor G.
My daughters were only four and one when I was diagnosed with glioblastoma (GBM) in 2017. Mostly, they’ve known me with brain cancer. Since my diagnosis, I find myself intentionally celebrating the little things and focusing on making memories with my wife and girls, whether it’s bike rides in the park, camping, or cheering them on at their extracurricular activities. I share my story to offer hope to others.
I worked at an employee assistance program where we provided emotional, legal, and financial support to employees of local companies. The in-house counselor always used a white noise machine outside her office so people couldn’t listen to her conversations. I remember one Monday that it gave me a headache. I thought it was weird, and I took some Ibuprofen, which helped a little bit. However, it kept getting worse throughout the week. It was so bad by Saturday night that I couldn’t sleep.
My wife, Sarah, took me to the ER at 5 a.m. on Sunday. They did a CT scan, and we heard those words that nobody wants to hear, “You’ve got a large mass on your brain.”
It was complete chaos for a couple of months after that. You’re given this diagnosis, and then people are trying to help, which is amazing, but you don’t know what you need. You’re just trying to figure out what you must do that day to stay alive.
I had three brain surgeries that year. After my first surgery in February, I had a MRSA infection. By April, I had to have part of my skull flap removed because it was infected, and I spent almost two weeks in the hospital, missing Easter and my birthday. For three months, I got a lot of weird looks walking around because I was missing a portion of my skull before having my final surgery in August to replace the skull flap.
After radiation and oral chemotherapy, I started maintenance chemo — five days on, 23 days off — and it was hard for me. I got really sick that year and basically just slept all the time.
My mom and her wife moved in with us because I couldn’t care for my two little kids. After all, they needed more attention than I could give. One of them was in preschool, so she needed help getting to school while my wife took me to my radiation sessions. It was great that my family could help because I don’t know how else we would have done it.
My wife was always there. I don’t think I was the best patient or partner. I was 31 then, thinking, “How could I have cancer? That’s ridiculous.” I remember on one of our drives home from radiation, and she said something about brain cancer before I received my actual diagnosis. I just snapped at her because I was convinced it wasn’t cancer. I think those first couple of months were tough on her.
I wouldn’t be here if she weren’t my caretaker. That’s how beneficial she has been to me. It’s hard when the numbers for GBM are pretty ugly, but she’s just always so happy and cheerful. I think I get my happiness and positivity from her.
When they find something unsettling on a scan, I try to put all my effort and focus into either my woodworking business or watching my kids do gymnastics or jazz dance. If I don’t have anything I’m working on, I’ll just go out and start cutting wood because it’s a good stress reliever to cut things. Occasionally, it’s hard to keep the thoughts out of your mind like, “What if it comes back?” I just try not to think about it and stay busy.
Personally, I think this diagnosis is harder on the caregivers than it is on the patients. If I die, I die, but the caregivers, my family, and my friends have to keep living.
We decided to try anything that came along. My radiation oncologist showed us a head dummy with the Optune arrays on it, and we went home and looked into it. When Optune was mentioned, I let my wife, a journalist at the time, do all the research. She learned that it was a cool technology that sends electric fields to the brain about 200,000 times a second through its arrays.
I think that the biggest issue with people and Optune is shaving their heads, but I had already been shaving my head for a while because my family has terrible genes, so it wasn’t a problem for me.
The first 90 days with Optune are tough. If you’re leaving the house, you have to make sure the backpack has enough batteries for however long you’re going to be gone. The goal is to wear it 75% of the day, which is 18 hours. I wear mine as long as I can — three or four days straight at a time. After four days, my hair has grown out enough that I have to take it off and send it back to the company because it’s medical waste at that point. I shave my head and then place the new arrays on my head.
I like to go to the park with my two daughters, now 8 and 11, on our bikes. I had to get a bigger helmet to fit over my Optune device so I could wear it while biking. If I go kayaking with my mom, I just take it off for the day. I average around 90% usage. The only side effects I’ve had are skin irritation, so I had to get ointment from a doctor that helps relieve the sensitivity.
When I started wearing it after my third surgery, we told my girls, “Daddy’s got this thing on his head because he is sick, but it’s helping him keep the sickness away.” My four-year-old thought the device was cool because it had lights and beeps. At first, she was big into being my little battery helper. When it would beep, she would grab a battery.
It’s just been with me so long now that it looks weird when I don’t wear it. It’s become part of my life.
We all know we’re going to die at some point, right? Now I know I will die, and it’ll probably be from GBM.
I try to have hope. I don’t want to miss anything, so we go all out on things now, like birthdays and a big party at Christmas. Let’s spoil the kids. I want to enjoy all the little things, like playing a game with my kids. I want to see them grow up, go to middle school, go to high school, go to college, and get married. I’m dealing with all the regular dad stuff right now, and I want to be a grandpa who just spoils the kids.
We bought a pop-up camper and go up to a fantastic spot near Grand Mesa three or four times a year. It’s just like heaven for me.
It’s easier for me to enjoy things and not get angry about the little things. Before my diagnosis, I found myself losing my temper a lot. Now, I try to think, “Is this really that big of a deal?” It’s changed my mindset a lot. Obviously, there are still bills to pay and things like that, but I’m actually happier now. I have better goals now. Before, my dreams were like I needed to buy a fast car. Now, I want to make people’s lives better.
We attended the Colorado Brain Tumor Walk & Race for the first time in 2018. Sarah is from Denver, about four hours away, so it was easy to combine seeing family with the event. After the pandemic, we returned to the event in 2022.
Being around people suffering from the same disease was cool because not many people know what it’s like to be diagnosed with something with such a terrible prognosis. They’re all so supportive. A lot of them have lost people. I hate hearing those stories, but I, too, have seen three of my friends die, and one had a recurrence. It’s nice being close to people who know what you’re going through.
I feel like I have a pretty good story. I came out of my surgeries and the actual brain cancer pretty well. One of my friends in California has speech issues. Some people have mobility issues or seizures. I did have one seizure, but I can still talk. My biggest issue is my short-term memory.
We were never given a prognosis, so we asked my chemo oncologist. I’ll never forget what he said because this has become our motto. He shared a Mark Twain quote that says, “There are three kinds of lies: lies, damned lies, and statistics.” That made me realize that we don’t have to worry about all the numbers or the statistics. We just have to worry about me getting better.
I feel like that’s been the biggest thing for me. It’s just a really terrible prognosis for brain cancer survivors. I want to tell others not to worry about the numbers and focus on yourself. Try to stay positive and have hope.
I like to share my story and spread hope so other people can look at me and say, “This guy can do it. Why can’t I?”
TAGGED WITH: brain cancer, glioblastoma, #GBMDay
