Making the decision to have brain surgeryWhen an MRI confirmed I had a tumor in my brain, I couldn’t believe it. I kept waking up in the middle of the night thinking, It’s not real; it must have been a dream. It was all I could think about. I felt okay, so I guess I was still in denial. I went to see a neurosurgeon right away, who advised me I needed brain surgery. Deciding to pursue brain surgery was extremely tough, but I knew I had to have surgery to fully diagnose this cancer. I trusted my neurology oncologist group to help me make the most logical decisions regarding my health and safety, so if he suggested something, I would do it.
Post-surgery and diagnosisI had surgery within a couple of days by a great doctor I worked with at the hospital. I am a registered nurse. It all happened very quickly. The cancer cells were intermixed with my normal brain cells, so he could not remove any portion of my brain tumor. He did a brain biopsy to remove a sample of the abnormal brain tissue for examination. I ended up with a small titanium plate attached to the skull.
Right before the surgery, which was on a Wednesday, I asked my nurse navigator if I could go back to work at the end of that week. She said since I was having brain surgery that it would be best to take at least a couple of days off. I did go back to work the next week because going back to work just felt normal to me. I was never a cancer nurse, so I don’t know much about it. Honestly, I really felt like I was a patient. I thought I would just have one little surgery and go back to work.
When we got the initial results back, it looked like my tumor was a lesser grade than we thought. My doctor and his assistant knew me and were all very excited. My husband was jumping up and down. Then two days later, the final results came back with the worst-case scenario—stage 4 GBM. I was shell-shocked.
Despite this aggressive diagnosis, I knew I still needed to be the strong mother, wife, and person I’ve always been. I met with my neuro-oncologist two days after the surgery to discuss treatment options. He started talking about Optune, so I read as much as I could about this treatment. I learned that it was a device that would be connected to my head with arrays, which meant I would have to shave my head to use it. The hardest part about deciding to use Optune was the anticipation of starting it. There were still so many unknowns running through my head even when I made the decision with my doctor to start Optune.
It definitely took trial and error to figure out what worked best for me when I first started Optune. I have gotten used to using the device—it’s like carrying a purse 24/7. Really the only thing I’ll wear on top of Optune is a little crinkle cap. I looked into wearing a wig, but I think it would be too hot for me. One time my daughter and I were looking for wigs, and we found one that we liked. My husband said, “I don’t know, I’m used to you without hair now and you are beautiful.” So, I didn’t get the wig, which was easier for me.
Experience using Optune
Since starting Optune, my MRIs have shown no new growth on my tumor, which has given me a positive feeling that I’m doing something right for me in terms of treatment. I am very happy I made the decision to use Optune and feel grateful for the love and support I have received during this unexpected journey.