I wanted to share my story about being diagnosed with brain cancer (glioblastoma).
Glioblastoma is an aggressive and deadly cancer with an average prognosis of 12-18 months and less than 7% survival at five years after diagnosis.
I had no obvious symptoms prior to my diagnosis. I was working full time and was a busy wife and mom of two children. I had a headache one evening and had a tonic-clonic seizure the next morning, was taken to the ER, and had another tonic-clonic seizure—where it was discovered I had a brain tumor. I transferred to Lincoln where I had a craniotomy.
At this point, I had very limited use of my left side and needed a walker and assistance to walk. I also had difficulty with sensitivity to light and temperature as well as issues with problem-solving, reading, word recall, and short-term memory. I started physical, speech, and occupational therapy to help combat these issues.[BL1] Over the next couple of months, I had 30 radiation treatments and six weeks of daily chemotherapy followed by six months of chemotherapy for five days each month which is the standard of care for glioblastoma. During this time, I continued with physical, speech, and occupational therapy. I cannot stress enough how important the therapy was in my recovery.
Also, during this time, I started seeing a mental health professional. Probably everyone with a brain injury has experienced a range of emotions including but not limited to anxiety, worry, stress, isolation, sadness, guilt, anger, loneliness, etc. and I want others to know that it’s okay to ask for help figuring out how to deal with something so overwhelming. Mental health care was one of the things that helped me cope and develop strategies to deal with my situation.
Today, I am living a mostly “normal” life. I just reached two years post diagnosis. I work part-time. I am in “surveillance mode” which means I go for MRI’s every three months. I take anti-seizure medication daily.
I also wear a device called Optune. It’s cumbersome and kind of hot, itchy and uncomfortable, but it is one of the few FDA-approved treatments available. I have this on at least 75% of the time, so I sleep with it and everything. When I have it off and am able to go out with a wig on, no one even knows that I have this cancer. When I have it on sometimes people stare or sometimes they avoid eye contact, but not always. That’s hard and really does a number on my self-esteem. If people ask, I try to offer a brief explanation to help them understand so that maybe it will be easier for the next person.
I have been able to connect with others using Optune and others with glioblastoma through a couple of online groups. This has been helpful as it is not that common to connect in person with other people with brain cancer and fewer still using Optune. Having resources like the Brain Injury Alliance of Nebraska also helps because while there are cancer support groups, they don’t necessarily understand the unique impact of a brain injury the way others with a brain injury do. Having both cancer support and brain injury support is extremely beneficial.
I want to be an example of hope for anyone out there facing brain cancer. No one knows exactly how long they have to live (whether you have brain cancer or not) so do your best to start each day by acknowledging the things you have to be grateful for and then go about your day enjoying and experiencing all that life has to offer. Even if it’s everyday things like: “I have no pain today, I can hear the birds chirping, I get to spend time with my family, friends, pets” – whatever you can think of to count as a blessing or a reason to celebrate. I actually celebrated when I managed to do laundry by myself—which is something I only complained about before brain cancer! I would NEVER call cancer or a brain injury a gift, but it is life-altering and definitely changes the way you view your life, your body, and how you want to spend your time.