My name is Marcia, and I live in Menifee in southern California, and I've been using Optune® for nine months. My husband and I had been retired. We were enjoying our retirement. We traveled a lot. I was volunteering at the local hospital. We spent time playing with our grandkids. So we were pretty much living the dream.
About a year and a half ago we were driving home from Arizona, and I noticed something was funny with my eyes. They started to pull to the left, and I tried to bring them back and they would go again, and I realized that I had no control over them and it scared me to death. I thought maybe I was having a stroke. It became difficult just to go about my daily life because I would get these attacks six and seven times a day, and then one morning I had a very large seizure. It was a few days before I really understood that I had a GBM. I was trying to wrap my mind around the idea that I had cancer, and it comes as a shock to everybody.
So, when you get a diagnosis—probably any diagnosis—the first thing you do is you try to research it and find out about it, and when you get this specific diagnosis of having a GBM, it can be a little bit bleak.
I believe it was the first appointment that my parents went to meet with new specialists and among other, you know, treatment options that they had recommended was the Optune.
Subsequently, Marcia had chemo and radiation treatment for several weeks.
So we went to the Optune website and read all about it. The Novocure support was amazing. It started with our device support specialist, who taught us how to use it, and Novocure was there for us to call anytime we needed. I was really excited at the prospect of using the Optune device. I understood that I'd have to shave my head, but I was never a person who cared too much about my hair anyway and always wore it pretty short, so that didn't bother me. I didn't worry about wearing it out and people looking at me—that didn't bother me either.
Having the arrays put on felt fine. My husband has done all my array changes, and he is so good at it. I might hire him out. He does it very quickly now too. In the beginning it seemed like it was quite a process, but now it's a very quick thing. The Optune now is just like an extension of myself. It goes everywhere with me, and I'm looking forward to getting stronger so I can carry it on my back more frequently.
We enjoy having our grandkids over. I play clay with them, and they like to play blocks with us, and I like to read to them, and so we have a really good time with the kids—and in general we love having the family over. That's what's really nice. My grandkids have never asked about it. They think it's just the way Grammy is.
I have a friend, Diane, back in New York who uses the Optune device—and the way we became friends was through her husband being on the American Brain Tumor Association Inspire website—and now Diane and I talk by email all the time, and she was asking me if we had a support group out here—because she didn't have one very close to her back there—and then we laughed because I told her no; she is my support group.
One problem I have with the Optune is the heat. It's sensitive to heat and, being in southern California, we get really hot summers here, so we have to be very careful. I have to sit under shade structures whenever I can, and I have to limit my time outside.
I would advise any GBM patient to try the Optune device if their doctor has recommended it. I think it's absolutely worth trying.
It's really easy—especially at the beginning of this kind of diagnosis—to get caught up in the statistics and the numbers and months or whatever, but each person is different and each case is different, and you just never know what is in store for you or for your loved one.
And I guess I would say that there is a lot of reason to have hope.
I would say that some of the treatments are up to the Optune device becoming available. The treatment aspect is in the hands of someone else, and with the Optune the caregiver does have the opportunity and ability to be directly and intimately involved with a treatment option. So, for me, the changing the array is an opportunity to communicate with Marcia and to have direct contact with the treatment aspect.
I think my appreciation of my family has grown so tremendously. What they did when this happened to me was unbelievable. My husband, my kids, my sister, they stopped dead in their tracks and did everything I needed done. My husband was my personal warrior—and I can never thank him enough for that—and I have the best family in the world.