‘I Thought My Seizures Were Caused By A Postpartum Complication, But It Was Actually Brain Cancer’
On Dec. 7, 2021, a little more than a month after my daughter Maeve was born, I was relaxing at home with my husband. We had just finished dinner, and we were resting in the living room. At one point, he walked away and when he came back in, he found me laying on the floor. I couldn’t remember how I got there, but I had apparently kicked the coffee table over and I was really out of it.
I got up in a daze and decided to take a shower. Little bits and pieces started coming back to me—I was sitting on the couch and my hand had started shaking. I realized I didn't have control of my hand and it shot up straight into the air, like I was raising it. I remembered looking at it in horror because losing control of part of your body is terrifying. After that, I stopped breathing and passed out.
Having just had a baby, I thought it had to do with a crazy postpartum complication, so I wasn't panicked. I was just like, “That was a really scary thing. Let's go to the hospital and get this checked out.” We didn't think it was urgent enough that we needed to call an ambulance, and the hospital was only two minutes away from our house. We asked my sister to come watch the baby. As we were driving, my arm started shaking again, and I said to my husband, “I think it's happening again.” Then it was lights out.
Later, I learned the shaking I had felt in the living room was a partial seizure, also called a focal seizure, which can start in one part of the brain and spread to other areas. It then developed into a tonic-clonic seizure when I lost consciousness and couldn’t breathe.
Until that day, I’ve never had a seizure before in my life.
When I woke up again from the seizure I had on the way to the hospital, there were people asking me all kinds of questions like who I was and where I was. I was brought to the emergency room, where I went through another seizure, but I didn't remember anything after that. I was becoming more and more out of it with each seizure. I remember being put in an MRI machine and being told to stay still. I was terrified, and I had no idea what was going on.
Doctors were coming in and out of my room, but I almost felt like I wasn't really there. They transferred me to another hospital with a neuro ICU, but I don’t remember that at all. When I was actually with it, which was about two days after I was moved out of the ICU, there was a neurosurgeon in my room. She thought it was most likely a brain tumor.
I was like, “What are you talking about? It’s definitely not a tumor. It's definitely related to my pregnancy. Why would you say it's a tumor? I just had a baby. There's no way.”
So after I was discharged home, my sister, who used to work for a brain tumor research center on the West Coast, sent my MRIs to her former colleagues, asking them to confirm whether I had a brain tumor or something else. When they said one of their surgeons wanted to talk to me, we knew then it was probably a tumor.
A neurosurgeon from University of California San Francisco called me and said he thought it was a low-grade glioma called an oligodendroglioma.
A glioma is a type of brain tumor that originates in the glial cells that surround and support neurons in the brain, including oligodendrocytes. You definitely don't want a brain tumor or a glioma of any kind, but I had a slow-growing glioma and he said that’s something to be thankful for.
I was freaking out. I was a new mom and just wanted to focus on that. I wanted to know what butt creams and diapers are best for my baby. I didn’t want to focus on finding a neurosurgeon.
But I knew I had to get to work. My sister, my mom, and my whole network helped me hit the ground running, interviewing neurosurgeons and neuro-oncologists. When we asked if the pregnancy had anything to do with the tumor, they said it's possible. And I’ve seen a lot of women in the brain tumor community who have been diagnosed either recently after giving birth or within a year or two after. The hormones could have contributed to its growth.
And sleep deprivation is a trigger for seizures. It's possible that having little sleep while taking care of a new baby and experiencing the hormone fluctuations of pregnancy made my brain tumor reveal itself. So, it's almost like having my daughter saved my life because it revealed this slow-growing tumor. It could have progressed to a later stage if it hadn't been detected.
I booked my surgery for Jan. 20, 2022, which is a day that I'll never forget.
My daughter was only 3 months old. It was very emotional to have to leave her and go have this surgery. I was very scared but also very determined.
They removed most of my tumor, but there's a small portion in my motor cortex (which controls movement of the the body) that they couldn't touch. Gliomas grow in a scattered way, so they're like a firework with specks outside of the center. Even if my surgeon were to remove all the cells he saw and make me paralyzed on one side, he still might not get everything. So we treated as many of the rest of the bad or pesky cells, as I refer to them, with radiation and chemo.
I just wrapped up my last cycle of chemo in December 2022. It was a long process—during each round, you have to take the chemo pill for five days and then wait 28 days before your next round because it takes that much time for your body to recover. I had to do a blood test every week to monitor my red and white blood cell counts. I continue to go for MRIs every two months to keep an eye on the remaining tumor cells and make sure they don't change.
They never talk about brain tumors as being in remission or not because you basically always have them and they could grow at any point.
That's something you have to be at peace with and live with. You never know what's going to happen, but you also don’t know what kind of medical advances can happen. That’s why I try to take care of my health as best as I possibly can while also doing everything I can to help push medical research on oligo treatment forward. I am a graphic designer, not a scientist or doctor, but I can help raise money and awareness.
I found an organization called Oligo Nation, which was founded by a dad whose two sons both have oligos. They know time is super precious, so their focus is supporting research that can lead to new treatments within the next five years. That’s amazing because most recurrences occur five to seven years after the first one.
If I don't have a recurrence, that would be great. But I also would like to not just sit around and wait. And I want to help other people who may have recurrences now or down the line.
You Might Also Like
