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How come I didn’t Know

Published on June 11, 2021 in Share Your Story

I began to lose my hearing at the age of 17 and my audiologist chalked it up to a case of otosclerosis. I always had seasonal allergies with headaches, which my PCP thought nothing of. I wound up needed glasses by 19 and am still a bit farsighted.

Fast forward through my awkward 20’s and I wound up needing fertility treatments after my husband and I got married. After a few rounds of ART I became pregnant with my first child and due to my age and other health issues I was managed by Yale’s High risk OB practice.

After two more difficult pregnancies and my last birth drugless my headaches became even worse, so bad that I couldn’t open my eyes and they were full of tears. My legs weren’t working at all and I was tired & listless. I was evaluated by psych at that point and they initially caulked it up to post partum depression. I pushed back and said, “look, I don’t even want to hurt him (I was pointing to my husband lol).”

They finally MRI’d me a day and a half after delivery and that’s when it all changed…

That evening I was brought into another room on the Maternity floor with my husband and two doctors along with one of the High risk OB’s from the practice. They pulled up some images of my MRI results on the computer cart that was wheeled in. While my husband held my hand one of the Neurologists told me I had a large mass in my frontal lobe, which they said was most likely benign. It was the size of an orange. I was brought back to my room, put on a ton of steroids to stop the swelling and they kept the baby in the nursery overnight.

The next morning, they brought me to the Neurology and my baby went home with my husband.

I had two Chaplains, a Priest and a Rabbi come visit me, so I could talk to them. I was then visited by an LCSW and one of the hospital’s Psychologists and was put on antidepressants. I had a few friends and family visit over the next few days. We were waiting for the swelling to go down, so they could remove the tumor. I just wanted to go home and be with my newly completed family. The guilt was settling in.

Alone at night, I told myself that I had to stay strong, as I did not want to burden my family any further than this.

It took 9hrs to remove the Meningioma that was in my right frontal lobe. I woke up in severe pain, but I could talk and was able to move my fingers and feet. I was so relieved to survive, but was still worried about the Pathology results.

I left the ICU after 1 day and received the results a few weeks later – it was an Atypical grade II Meningioma. They were considering radiology at that point but I begged my Neuro Oncologist to wait another month for the results from my next MRI. I was still receiving Speech and OT services at home and was making amazing progress, while attempting to parent my 3 young boys.

Everything was going smoothly and I had no seizures until a few months ago. I still have my MRI’s every few months and have my blood levels checked after being on my third type of anticonvulsants. I still deal with a bit of social stigma and feel a bit isolated at times, but I am one of the lucky ones and am grateful to all of those who have supported me on my journey.

I plan to continue to raise awareness and to support my fellow members of the brain tumor community and their caregivers.

Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.

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