Everything In Between
By: Tom, Optune GioTM Patient Ambassador
Life with GBM
Hi, my name is Tom, and I have glioblastoma (GBM). Today, I want to have a chance to dive into the other side of GBM that people don’t often talk about. Like life. Travel. Family. And everything in between.
This year, I went to Disney for the first time with my wife, Kelly, and her cousin, Holly.
I know what you’re thinking, I’m in my forties and have never seen Goofy up close. Well, get this—I’d never even been to a theme park before.
This was all new to me, so I did my best to make the most of it. Holly got me a hat with Mickey ears, and I did all I could to prepare myself to take on my first legit roller coaster.
Splash Mountain was closed, but we did everything else we could do. Kelly’s cousin used to live there, so she has annual passes. She minimized the wait times with passes and gave us the VIP experience. She was all over it.
At one point, we were waiting in line with our family, and we turned to see her giving someone’s dad a few tips on how to use their app. She’s like an unofficial theme park expert. It was a lot of fun.
Sweater Weather for Louie
On all our trips we get our dog, Louie, a souvenir sweater. Disney was no exception.
After our trip, we putzed around California for a few days seeing the sights. Kelly even got to check out some of her old stomping grounds (she lived there after college). We made the most of it!
Luckily, in the last few days, we found the perfect little baja sweater for Louie. He loves sweaters. He was so excited when we brought it home. When we put it on him, he pranced around the house for days showing it off.
Sweaters are a big staple in Louie’s life. Other than that, he just rolls around in the grass and goes on walks. He’s blind, but it doesn’t seem to affect him much. He can still chase sticks, so he’s happy as can be.
People always tell us that they don’t think he's blind. But we brought Louie to see the doggy optometrist and even the dog neurologist. So, there’s not much to debate. Like me, he got the full work-up.
End of Summer Blues
After our vacations, Kelly started back up at school. She’s a speech pathologist who works with high-risk students. She loves it. She finds meaning in making a difference. And she’s pretty tough. She tends to let the harder days roll off her back.
Since I work from home, the beginning of the school year is always a bummer for me. The house is now empty all day. I started to get the end-of-summer blues.
But even though things have quieted down at home, there’s still a lot to look forward to this year. One thing I managed to do was get my Optune Gio usage up. I got my latest report recently and I was at 95%! I’m super pleased with that and continue to have good scans.
Cancer is a weird experience with a lot of layers. When I first started radiation treatments after my diagnosis, my doctors gave me this mold of my face in plastic netting that they used to clamp over my face during treatment. When I got back from Disney, I put the Mickey ears on it and have that hanging in my garage. I got a kick out of that.
Seeing it takes me back to my first few days of using Optune Gio. I remember how I felt when I first looked in the mirror with it on. I looked like a patient. It was the first time that I felt like I really looked as sick as I was. I had kept pretty good spirits through most of the treatment process, but after seeing myself like that, I told Kelly, “I’m going to be bummed out today.”
I know that Kelly sees me as uncomplaining, someone who rolls with the punches. But in that moment, I think she understood the gravity of it. We both sat quietly for a while and took everything in. Yet while it was, and sometimes still is, hard to use a device that reminds me of my disease, I know that I chose this and that it’s helping me with my GBM.
Optune Gio may make me look different, but that’s okay. Lots of people have things that make them different, and a lot of those people have made those differences into strengths. Why can’t I? I know that I am much more than this diagnosis.
Cancer may shorten my life, but in the meantime, it may also give me an opportunity to live more fully, connect with people more deeply, and try to become the best version of myself.
To me, life isn’t about living as long as you can. It’s about living well, with a purpose. It’s about riding the roller coaster. Buying the dog a sweater. Wearing the Mickey ears.
While cancer can be hard to live with, it is also, in some ways, just another life experience. And that includes the good along with the bad. It’s not something that has to destroy all happiness. Life still happens around you. You go to work, water the plants, plan a trip, and make the most of it.
Cancer is rough. But it’s just a part of life. The only thing that matters is how you let it change you.
I say let it be for the better.
Hang in there and thanks for reading!