Growing up independentMy parents split up when I was around four years old. Dad went to prison for robbery. My mom would be holding my baby brother and me in the car while, unbeknownst to her, dad was “knocking” the place off.
After my dad ended up in prison, my mom was left to raise us on her own until she remarried. I was raised in a very proud family, and we were taught to work hard. If you wanted more, work more hours.
I remember my mom telling me a story about how she had to take one government assistance check for help. She was so embarrassed that she went to another town to cash it, and never took another. After that, she got a job at a factory and worked there until she retired.
When I was diagnosed with glioblastoma (GBM), I automatically wanted to just handle it by myself. I viewed asking for help so negatively because of the way I was raised. But eventually, I realized that it’s okay to ask for help.
As a patient living with GBM, there are times I know I need help. As I’ve adjusted to using Optune, I’ve learned what I can and can’t do, what time of the day is best to do certain things, and when my next array change is going to be.
Reaching out for help
Before starting chemotherapy and radiation, my energy levels were on a gradual slope downward as I worked. Returning to work after those treatments, when my energy starts to get low, it’s like a sudden drop-off. When I am done, I am done.
I look at asking for help from the standpoint of, “I don’t want to ask unless absolutely necessary,” so I plan accordingly. I plan out my day, ensuring I have the necessary Optune equipment, making those times I need to ask for help rare.
One thing I like to do is stay focused on helping other people. Just because I have cancer and use Optune doesn’t mean I can’t help others. Some people feel sorry for themselves because of the seriousness of GBM, and it is very serious. However, closing themselves off to anyone and anything can be a very dangerous way of living. My pastor had a saying, “Everybody needs help sometimes, and no person is an island unto themselves.” I have spent my entire life helping others, and now when I need help, people fall over themselves to come to my aid.
My caregiver Linda and her husband Dave have been my friends for more than 40 years. She has been changing my arrays for several years now. In return, I mow their half-acre lawn and help them with projects in their home. I do what I can, and they understand when I can’t do more.
I have two main caregivers trained by my Device Support Specialist (DSS). I have several others I’ve trained myself. Linda and my son, Justin, were trained by my DSS when I first started with Optune. My son and his family live 1.5 hours away so he only changes my arrays when I am visiting them. Linda, on the other hand, lives a block away, so she does it three times a week.
When I was first diagnosed, right after surgery when I couldn’t drive, my son would go get groceries once a week for me. One time I wanted some snacks, so I decided to ride my bike to the little store in our town. While riding there, I was attacked by a pit bull. He lunged at my face, and I dodged, but he landed on my front tire. I ran him over and almost fell, but the dog was fine and just ran off. I was terrified. When Linda and Dave heard about it, they told me no more bike stuff—if I needed something from the store, they would drive me.
Also, when I was first diagnosed but before I retired, I was doing an electrical job a few blocks away in our town. The job turned out to be more than I had expected, and I was completely worn out. I knew I couldn’t finish the job without help. I called Linda to ask if she could help me get the equipment back to the van. She came right away with her college-aged daughter to help, and they were lifesavers.
Another quote I like to live by is from a movie called The Kid, and in the movie, a news reporter tells Bruce Willis’s character, “Never be afraid to ask for help, you just might get it.”