My diagnosis—more than a headache
Over the next month, I had constant headaches. I went to a few doctors trying to figure out what was happening, and it was my ENT who suggested that I schedule an MRI. The MRI showed a mass, so I made an appointment with a surgeon for a week later.
Unfortunately, I had a small seizure a few days later in the middle of the night and was immediately taken to a hospital where I had surgery.
While I was in recovery, the surgeon came out and told my husband, our children, and a group of friends who were there that I had a glioblastoma (GBM). He said he removed all of the tumor. But as so often is the case with GBM, we never know if it is all removed.
Radiation and chemo, then Optune®
After my surgery, I started a course of chemo and radiation therapy. Shortly after, I learned about a treatment called Optune. My doctor explained how Optune uses alternating electric fields (TTFields), which may slow or stop cancer cells from dividing.
“I wanted to do whatever I could to potentially slow the regrowth of GBM.”
I didn’t really have to think about it too hard. I wanted to do whatever I could to potentially slow the regrowth of GBM, so I decided this was what I had to do.
Goodbye hair, hello shaving
However, it did mean that I would have to say goodbye to my very long, thick red hair—one of the things I took pride in.
I wanted to do something special, so I invited some of my closest girlfriends to support me and witness the event. The female rabbi from my synagogue came and gave me a blessing for healing and asked all of my friends to place their hands on me and tell me what they wished for me.
It was a lovely ceremony after which I donated my hair in the hope that someone else could use it for a wig.
Even though I loved my hair, I’m almost relieved. I don’t have to worry about all the upkeep that was required. Well, not totally. My hair keeps trying to come back. My husband has to shave my head every time we change the arrays. We use the razor that nCompass™, Novocure’s support program, sent us.
When I started using Optune, a Device Support Specialist (DSS) from nCompass came out and showed my husband and me how to set it up. She comes out regularly to help with any issues we have, and she tells me what my percent of time on Optune has been.
“Part of how I can keep my percentage so high is that I use it while I’m sleeping.”
I’m always between 92% and 95%. My oncologist told me I needed to maintain at least 75% or 18 hours a day, but I want to make sure I’m above that. Part of how I can keep my percentage so high is that I use it while I’m sleeping, and I plan my activities that I’d rather do without Optune for times when I won’t be using it anyway.
Scalp care and the sun
When I started using Optune, I noticed some tenderness on my scalp. I pointed out the places that hurt, and my husband developed a system for arranging the arrays to keep my scalp from hurting. See the Optune Scalp Care Brochure here.
Another thing I noticed when I started using Optune was that I would hear the alarm when I went out for walks if it was sunny and warm. I wanted to be able to walk outside, so I decided to invest in a hat with SPF 50 on top that would shield Optune and my head from the sun. Since I started wearing the hat during my walks, I haven’t heard the alarm.
Focusing on self-care
I made a few changes in my life since my diagnosis. While I’ve continued to do many of my regular activities, like driving, dancing, playing mahjong, going to the theater, and traveling, some things have changed.
I stopped working, but have gotten involved in the National Brain Tumor Society, and I took part in their 5K walk/race. In just 6 weeks, I raised the third most of anyone, and my team raised the fourth most.
Since being diagnosed with GBM, I’ve become more in touch with my spirituality. I joined a meditation group. I try to stay positive. I’m also being more assertive about things. I’m always polite, but I make sure that I’m able to get what I need. Part of that is me planning ahead and communicating what I need, like when I travel. It just takes a little planning and a willingness to advocate for yourself.
I still see my brilliant oncologist regularly so that he can monitor my GBM. I have MRIs done every 6 to 8 weeks. I also see a radiation oncologist every 6 months. All of my doctors work at the same university hospital, so they are constantly communicating. And they communicate with me.
I am still overwhelmed and unimaginably appreciative of all of my friends and family who have stepped up and are sending me strength. My incredibly devoted, hard-working husband of over 48 years is with me for the long haul.
I can’t ask for a more supportive family and groups of friends. I consider myself lucky. You never know how many people you have touched in your life until they start touching you back.