My brain tumor was discovered after a grand mal seizure I had one night, while reading with my son in his bed. It was just two weeks before his ninth birthday. I didn’t know what was happening. One minute we were reading and the next I was frozen in a fetal position. I kept trying to will myself to move but I couldn’t—I was stuck. It was as if I had short-circuited. I could think, but I couldn’t speak or move. I remember fearing that I was going to die and I didn’t want to die like that—in my son’s bed.
I recall the words: “Please God, not here, not now, not like this, not in my son’s bed,” going through my mind. I was afraid that if I died in my son’s bed it would ruin his life.
Fortunately, my son noticed something was wrong and he yelled out for my husband. The paramedics were called and before I knew it, I was in a hospital emergency room. I recall drifting in and out of consciousness. Although I still couldn’t speak, at some point I was awake enough to push out the word “stroke.” Suddenly, I was taken for a CT scan, which was followed by an MRI. Before I knew it, I was in a hospital room and my husband was sitting next to me. Doctors were informing us that a mass was seen on my brain scans. All I heard was blah, blah, blah, BRAIN BIOPSY, blah, blah, blah, MALIGNANT BRAIN TUMOR.
Within a few days, a biopsy was performed and the malignant brain tumor diagnosis was confirmed. We were informed of the diagnosis and the medical team wanted to operate the next day. I was still in shock so I couldn’t process what we were being told. My anxiety was so bad that I just wanted to get the craniotomy over with. I was also thrilled that I didn’t die in my son’s bed, so in my mind I had already survived and each additional day was a blessing.
My husband wanted to get additional opinions so we were discharged from the hospital. We ended up at the UCLA Brain Tumor Center where several more MRIs were completed in addition to various types of language testing (the golf-ball size tumor was located in my left frontal lobe split between my language and motor functions). A complete brain map was developed prior to my craniotomy, which was performed by Dr. Linda Liau, Chair of the Department of Neurosurgery at UCLA.
There are a few things I would like to highlight for the newly diagnosed here:
If possible, be sure to seek a second opinion (if my husband hadn’t insisted on that, there could have been severe long-term implications).
Inquire about the number of craniotomies the neurosurgeon performs each year. Obviously, the more the better, but the goal is to find a neurosurgeon who performs at least 25 brain surgeries per year.
Try to find a hospital with the most current technology available. UCLA has the ability to conduct functional MRIs and the equipment to create a brain map. It was exhausting returning for so many appointments; however, having to do that gave us the confidence that we were in the right place.
Thankfully, Dr. Liau was able to perform a gross total resection on December 9, 2014. This means she removed all “visible” tumor. I’ve had numerous MRIs since (and until recently, each one was preceded with severe “scanxiety”), but they have all concluded with my neurooncologist using the word “stable” to describe what he observed on the scans. With that said, the road to recovery has been long and difficult. The ability of the brain to rewire itself is remarkable. I had aphasia and halted speech for a few years and although my speech is still affected when I’m tired, or talking on the phone, it gets better every day. I had temporary paralysis of my right side and it took a long time for me to regain mobility and a full range of motion. It has also taken time and a lot of support for me to finally accept ‘my new normal.’ I’m not the same person I was and I have limitations but in some ways, I’m an improved version of myself.
The steroid that I was given to reduce brain swelling prior to my surgery caused me to become diabetic. The diabetes went undetected until the morning of my surgery. Fortunately, my blood sugar levels normalized a few months later. I learned a powerful lesson after isolating myself in the hospital. I didn’t want any visitors other than my husband. Doing this led to depression, anger, and a sense of helplessness. Remember, I couldn’t speak and visitors probably could have helped me to communicate with the medical team. Sometimes you just have to allow others to be there for you.
Prior to the brain tumor diagnosis, I was a workaholic. I put everything into work and my work defined me. I neglected the very people in my life who actually loved me. It took a long time but eventually, I started to see the gifts in my brain tumor journey. My husband often reminded me that I’ve been given a second chance to live. I’ve been given a second chance—a chance that so many people never get. I don’t take the second chance for granted…I am far more balanced now than I’ve ever been. I am present for my son and husband in ways that I never was before. I also did something I never thought I’d do: I started a blog a few years ago to share what I was learning with anyone who was interested.
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