My name is James. I'm 40 years old, and I've been on Optune for five months. I am a nurse; I work as a nurse educator on the local Indian reservation. I am married. I’ve been married for 17 years, and I have four daughters.
I'm a runner, and I was having issues with my legs. My legs were feeling heavy, so I went and saw my primary care physician. She wanted to rule me out for muscular sclerosis, so she did an MRI that went pretty much from my brain all the way down my spine, and I get out of the MRI and the radiologist comes up to me and he told me I'd had a tumor in my brain. My first thought was “Well that's not good.” I called my wife and—I remember it—I just said “Hey I'm in the ER. They found a tumor in my brain. They’re going to probably fly me out, so you'll probably want to come and see me.”
I can remember he called me and he was so calm and so not panicked at all and is like “They found a tumor in my brain and I have to go to Phoenix, so you need to come here to the ER,” and I pretty much lost it.
Emotionally, for me, I don't show a lot of emotion, but my wife was struggling with it. She's the one that had to talk to all of our girls and everything and—especially the oldest—she really struggled emotionally having to deal with “I don't know what's going to go on. Is my dad going to be there for me?” You know, it really made our priorities change. We just stopped and said “You know what? Instead of planning stuff, we're going to start doing stuff and not let this control us.” Initially, I had a surgery. They removed 95 percent of the tumor, and then I went on to chemo and radiation. Six months ago I had a small recurrence on my MRI. We were in the doctor's office and he said “It looks like there's some growth there, but I'm going to take it in front of the tumor board and we'll discuss it and I'll give you a call and let you know.” So, a day later he calls and he said “Yes there was a small recurrence. I'm suggesting you get on Optune,” and then we started researching it. At that time, we looked on the website, found out what it was, what it looks like, how it's been helping other people, decided that that was definitely something we were going to do. Two weeks later we were on it.
We had hope, and it wasn't a question of if. It was “When can we get this?”
The doctor told me that we'd have to wear it for at least 18 hours every day, and I would be sleeping with it and I’d just make it part of my everyday life. I'd asked him how long I would have to wear it for, and he basically told me indefinitely, which at first was like “Well that's not what I want to hear.” Then I started thinking that indefinitely—the longer I get to spend with my family and my kids and stuff like that—it's worth it.
My initial concerns with it was I really don't like a lot of attention being brought to me, so my thought was “Oh I'm going to have people looking at me.” So I really felt like I was going to be very self-conscious of it, and once I got it, you know, for the first week I really was self-conscious. I didn't want to leave the house. I was going to work with it, but I was trying to find ways to keep it covered up and not wanting to leave my office, but after about a week I said “I need to get used to it.” Now it's just everyday part of my life.
I'm a very active person. I'm a marathon runner. I've ran nine marathons, 12 half-marathons I think, countless smaller, shorter races. My first reaction to Optune was “Am I still going to be able to be active?” During chemo and radiation, I didn't run. I didn't have any energy. I was fatigued every day—didn't really want to get up and move around too much—but with Optune I have had no problems staying active and doing the things that I like to do. If you know that you can continue to do the things that you're doing before, it makes a big difference. I go out. I have no problems going to the girls’ softball games, go shopping, and, you know, go for walks and stuff like that. I'm able to go to work. I drive to work every day, work almost a full day.
My wife has been very supportive throughout this whole thing. Being a nurse, I'm not used to people doing things for me. I like doing everything on my own, and I had to step back and let her really take care of me for quite a while. She does all of my array changes and everything. She arranges all my appointments for me, picks up all my medicines for me, and really is there for me in everything I need.
Whenever we were first getting on Optune, we had a lot of questions, you know, “How are we going to put it on? How precise does it have to be?” They actually sent a device support specialist to our house. She gave us one-on-one education on everything from shaving our head to putting on the arrays, how the device actually works, what to do when you get certain alarms, and information about tech support—what tech support could do for us. The great support that the company had that anytime we needed anything, you know, 24 hours a day seven days a week, we could just call them and they would help us out with it.
For other recurrent GBM patients, I would definitely consider using Optune. It's really made a difference in my life, so I just want to say thank you.