While I have always been a very independent woman, my siblings, children, and grandchildren are incredibly important to me. We try to see each other seasonally and video chat as often as possible. My two friends, Robin and Kathy, are a daily part of my life. Kathy and I have been friends since we were children, and we still talk every day.
For 30 years, I’d worked as a registered dietitian providing outpatient medical nutrition counseling. Nine months into my 31st year, however, glioblastoma hit.
I had a strange headache the Sunday before my diagnosis. Being a workaholic, I went to work very early Monday morning, but by that afternoon, I felt nauseous and vomited. The nurse in charge took my blood pressure. It was dangerously low. She called 9-1-1, and I was transferred to a hospital about an hour away. MRIs revealed that I had a bleeding tumor in my brain. Two days later, I had surgery.
After the tumor had been removed, the neuro-oncologist told me I was diagnosed with a malignant, left temporal lobe glioblastoma. I had never been sick before, so my first thoughts were "What did I do wrong?"
Why did this happen to me?
Even though I was scared of the unknown, I didn’t want to look up glioblastoma. I didn’t want to hear how long I had to live; I didn’t want to hear the negatives. I just wanted to focus on how I was going to fight this. My three grandsons are the most important part of my life. They would be devastated if I died. In moments when I feel tired, weak, or frustrated, I think of them. They continue to be my motivation to keep going. After my surgery, they were the ones who gave me the strength to fight.
My doctor and I decided the next course of action would be six weeks of daily radiation with chemotherapy. Unfortunately, my body could not tolerate the chemotherapy, and there was evidence of tumor growth on my MRI. With this confirmation of a recurrence, my neuro-oncologist recommended Optune®.
At first, I wondered how I was going to adapt to it. I was worried how Optune was going to feel on my head, especially when sleeping. My conversation with my doctor made me feel comfortable about Optune, and we decided to give it a try. My family, friends, and I feel very blessed that Optune was recommended to me to treat my recurrent glioblastoma.
I have been using Optune for over two years. So far, I’ve found it simple to use. A wonderful Device Support Specialist from Novocure came to my home and taught both me and Kathy how to use Optune, how to put on the arrays, and what to do if the alarms went off. I was so grateful for Kathy’s help and support as my primary caregiver.
The hardest adjustment was learning when to change the arrays. I learned that it’s important to change the arrays at least two times a week, or at most every four days, to avoid skin irritation. I follow the instructions from my doctor and my Device Support Specialist about how often to change arrays, and I haven’t had much skin irritation. I try to be on therapy as long as possible, so I don’t want skin irritation to interfere with that.
I always strive for perfection. I was that girl in school who aimed for 100 percent on everything. When my Device Support Specialist reviewed my compliance with me for the first time, I was disappointed that I was at only 87 percent. I've never gotten an 87 percent on anything! I was determined to get into the 90s. It helps that the device is about the size of a pocketbook, and it’s not heavy or bulky. Wherever I go, Optune can go with me!
There are so few things I can change and control, but being able to have an active role in my fight against glioblastoma means so much to me. I don’t like wearing hats and wigs, so I’ve gotten used to people staring at me. It doesn’t really bother me. If someone asks, I use it as an opportunity to spread awareness. I want to make people aware of Optune and glioblastoma.
Even though I have GBM, I haven’t let it stop me from enjoying the time I have. My days now are very similar. I still try to do as many things without help as I can. I run my errands and live on my own. To de-stress, I go to mass every day, listen to music, and stay involved in my faith. I find support through my church family, my work friends, and out in the community. They help keep me positive.
I know the importance of having good support, and I’m so grateful for the help of Kathy and her husband, my family and friends, and my entire healthcare team. I have the most incredible team around me. Even though it’s been a difficult and humbling lesson at times, this independent woman has learned to step back and let others help. It’s a sign of strength, not weakness, because when you’re fighting a disease like GBM, you need as much help as you can get.