Facing a Brain Tumor Diagnosis with Strength and Resilience

April 12, 2023, by Dalouny, Glioblastoma Survivor

Monday, May 14, 2018, was a typical day working in the ophthalmology department at Kaiser Permanente. I was outside of my element, though, working with a different doctor that day. It was busy, which was normal, but it felt like I was struggling to keep up. 

I typically taught a class on cataract procedures to prospective patients. I usually answered questions after class but today was different. I just . . . couldn't. I remember having a headache, which was rare, and all of a sudden I couldn’t remember what I was doing. I knew then that something was wrong. 

Fortunately, there was an urgent care at the Kaiser location where I worked. I checked myself in, and from there everything is a bit fuzzy. Apparently, a computerized tomography (CT) scan was done and my boyfriend was called. I was told they found a mass and needed to send me for a magnetic resonance imaging (MRI) scan at Virginia Hospital Center (VHC).

The last thing that I remember before the MRI was thinking to myself, “Things are going to be okay." I told myself nothing was going to happen to me. Then, the doctor told me that they thought I had grade 4 glioblastoma. I couldn't believe it.

Treating My Shocking Diagnosis 

I had an MRI followed by a craniotomy to remove a grapefruit-sized tumor located in the left frontal lobe of my brain. To put it into perspective: from the Monday when I was admitted to urgent care until Friday when I had my brain surgery, I lost all ability to speak, read, and write. The neurosurgeons at the time told us that if I didn’t have the surgery, I would have roughly two weeks left to live.

For days, I sat in the hospital surrounded by my friends and family awaiting my extensive brain surgery. I didn’t feel like my normal self during this time. Each day everyone seemed to be in a whirlwind of emotions, from confusion and anger to sadness. I felt my family and friends clutch to the brief moments of familiar laughs we shared—and then watch as I was taken away in my bed to the operating room.

I was in the hospital for nearly four months to recover and relearn basic skills that we all take for granted, such as walking and identifying colors. This was my new normal. Apparently, I was quite a handful in the physical therapy wing. They caught me getting up and trying to walk in the middle of the night. Little did they know, I am extremely independent and not one to take anything, including cancer, lying down. The team at VHC was amazing. They pushed me when I felt weakest so I could recover.

Finding the Option that Saved My Life 

In the following two years, I underwent standard radiation, chemotherapy, and three rounds of CyberKnife radiosurgery treatment. My treatment led me to John Hopkins University, where I tried an experimental drug for nine months, which almost killed me. My white blood cell count was dangerously low and I underwent three blood transfusions. At that point, the only option left was to go to NIH where they saved my life.

For the past 16 months, I have been undergoing immunotherapy treatment. There has been no regression and, most importantly, I am relieved to hear the word “stable.” I am grateful to be in the 22 percent of glioblastoma patients my age with a five-year survival rate. This is a milestone to be proud of and to share.

Advising Others to Keep Pushing 

To those living with a tumor: keep pushing even when you want to stop. It will give others with a similar diagnosis inspiration to keep fighting. It has been—and continues to be—a journey. And throughout this journey, I am forever grateful for my family, my friends, my boyfriend (who is now my husband), and especially NIH. 

The extensive care and treatment that I have received has allowed me to live my life, which includes continuing to work at my job that I love and even continuing to travel for vacation. If you ask my friends and family, I have always been strong, resilient, and resolute. A brain tumor won’t stop me!