It Happened To Me: I Had A Brain Tumor

It was a light gray tuber-shaped mass imbedded in my brain tissue towards the base of my skull. It was also a different color than the rest of my brain. It didn’t take an expert to realize that it wasn’t good.

Nov 1, 2012 at 1:00pm | Leave a comment

June 2010 in Santiago, Chile dawned much like it always had. The seasons are opposite from the northern hemisphere and the gray rainy winter was not unusual. My Chilean fiancé and I had just gotten settled after the 8.8 earthquake that had rocked the country in February. We had been travelling in New York City at that time, but that didn’t mean we were immune to the powerful aftershocks. 

We had just made a date at the civil registrar closest to our apartment to get married. We only wanted a small civil ceremony. I remember the feeling when the crabby bureaucrat handed us our receipt for our August ceremony. My fiancé lifted me up and twirled me around while chanting, “We’re getting married! We’re getting married!” 

Because of everything that was going on, I didn’t think it was unusual that my everyday activities tired me more than usual. I didn’t find it strange that I was losing weight or that my sleep was fitful and I would wake up in soaked sheets. 

It was a little disconcerting that I would get off the metro and forget where I was or where I was going.  It was as if my eyes suddenly didn’t recognize my surroundings, even though I had lived in the Chilean capital for a couple of years.

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Celebrating my fiancé's birthday a few weeks after my surgery. I had lost about 15 pounds at this point. 

Finally, when I had to live with a migraine for over a month, I broke down and visited a doctor in Santiago. 

The doctor asked me about my symptoms and told me she thought I had a sinus infection. She prescribed me some strong antibiotics and told me that if I didn’t feel better in five days, I would need a head CT. In less than five days, my headache began to abate. 

I had been working as a translator and earning pretty good money until the work dried up. One day while I was looking for a job, I found a cheap flight to the United States and bought it. It was impulsive, but it had been three years since I had spent the Fourth of July with my family. I told myself that I deserved it. After all, the trip was only going to be three weeks. 

To be on the safe side, I made an appointment with my doctor in Minnesota for the day after I arrived. I didn’t trust that the antibiotics had cleared up my sinus infection. 

I missed my connecting flight in Houston because of engine trouble in Panama. The next morning, by the time I arrived, I had missed my appointment. It was my mom who told me to reschedule. 

My doctor is very good at reading between the lines. What the Chilean doctor had missed, she caught -- and she ordered an MRI right away. 

After having over 10 MRIs in the last two years, I now know I should have been worried when the tech came rushing out after the test, asking me, “Are you okay? Are you dizzy? Can you stand up? Let me help you.” 

I had taken a sedative to calm myself down during the MRI and I was still sleeping it off when my doctor called me two hours later. Normally, she’s very composed, but she sounded alarmed, “Where are you? Are you okay? I need to explain what the radiologist saw on your MRI.” 

She explained that they had found a lesion on my brain. She said there was significant swelling around it and I needed to go on steroids right away and meet with a neurosurgeon. I still didn’t comprehend what she was saying and I got angry.

“A lesion? What does that even mean?”

“It’s a mass. You have a mass in your brain. I’m going to put that prescription through for steroids to reduce the swelling. What pharmacy should I use?” 

“I don’t want steroids. I don’t need steroids!” I was getting a little panicked and all I could think of were the side effects I heard about with steroids. The rest of what she was saying did not sink in. 

I called to make an appointment with the neurosurgeon she recommended and they couldn’t see me for a week! My mom, who worked at the hospital at that time, called a friend and had some strings pulled. I got in the next afternoon and she went with me. 

Walking into the neurosurgery clinic was surreal. I didn’t feel like I belonged there. I still thought I had a lesion, which to me implied a boo-boo, an owie, that I had fallen down and hurt myself. Slap a Band-Aid on it, and it’s all better! 

The nurse led us to the room to wait. She went to the computer and began splicing through images. 

“Is that my brain?” I asked. 

“Yes. Have you ever seen your brain?” 

I was getting sweaty and suddenly I couldn’t speak. I shook my head "No."

“Come here and take a look.” She gestured for me to roll my chair next to hers. 

That was the moment I came face to face with my brain tumor. It was a light gray tuber-shaped mass imbedded in my brain tissue towards the base of my skull. The areas around it looked like ripples in a tide. They were also a different color than the rest of my brain. It didn’t take an expert to realize that it wasn’t good. 

The doctor walked in shortly after, disrupting our silent appraisal of the image. He had one of those personalities that was friendly and very self-assured. 

He started without hesitation, “You have a brain tumor, and we need to remove it.” 

He went on to explain that the tumor was on my occipital lobe, but due to its position close to my brain stem and on the interior of my brain, surgery would be more complicated, “a nine out of a 10 on the scale of complicated surgeries.” 

“But, this is who I am. This is my personality! This is me -- my brain!” I protested. 

He shook his head and said that there was no other alternative. This tumor would eventually kill me. The ripples represented swelling. Almost half my brain was swollen because there was nowhere for the swelling to go. It was trapped by my skull.

That’s why I was forgetting things, feeling fatigued and having horrible headaches. He even determined that I had likely been having seizures for several months, in those moments where I saw lights and felt like I was underwater or going to fall over. 

We scheduled surgery for the next week, right after the Fourth. As soon as the doctor left, I called my fiancé, who was at work back in Santiago. 

I remember sobbing on the phone. I remember incoherently saying that I needed him, that I was scared.  

“I’m coming there,” was his reply. And he flew to be by my side. 

The days leading up to surgery were bittersweet. Family and friends were a weird mix of supportive and aloof. Some of the people I had thought would always be there for me weren’t. It’s like they needed to be told what to say.

My doctor had told me there was a 10% chance that I would stroke out on the operating table. I didn’t sleep for the next three nights wondering if I should be doing something different (you know, really living it up) since I might never wake up again. 

Surgery went as well as could be expected. I awoke, to the sound of my doctor’s voice, in a bed tied down by tubes and machines. My memory of that time is nebulous. People came to see me but I forgot. I was too weak to form a sentence. I heard everything that was going on around me, but I couldn’t interact with anyone. 

I know I rubbed my eyes a lot, as if trying to wake up from a dream. My vision was extremely distorted. I saw squiggles everywhere and I was having hallucinations. Once, my dad walked into my room in his typical polo shirt. His body walked over to an empty chair and sat down, but his torso remained in my peripheral vision fly-fishing in a tutu.

They put me on high doses of steroids, anticonvulsants (to prevent seizures post-craniotomy) and a barrage of strong painkillers that made me throw up so much they had to add an intravenous antinausea drug to the mix.

In the end, it was a benign, low-grade meningioma. If you have to have a brain tumor, it was one of the better ones you can have. 

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One month after my surgery during a 24-hour ambulatory EEG. Those aren't the same craniotomy bandages!

The next few months were some of the most difficult of my life. My vision was slow to recover and I still have no peripheral vision on my left side. My memory was fragile and I would often forget things that had just happened. The state tried to revoke my license because I had been prescribed anticonvulsants. And the worst part was that the headaches and nausea did not end with the tumor removal. They only intensified. I went to the emergency room four times with pain so bad I couldn’t even moan.

After my fiancé went back to Chile, I sank into a deep depression. My friends who had at first been so supportive started to disperse. It’s like everyone thought that just because I was alive, I was fine. I recall how on a particularly bad day, one friend nearly yelled, “Oh my God! It’s not like it was cancer. Be thankful and get over it!” 

Heartbreakingly, during that painful period, I ended two dear friendships and broke up with my fiancé. No one had the energy to handle my self-pity. I was inconsolable. It was a cycle I couldn’t break free of. I was convinced that God had forsaken me. 

It was almost a year before I felt better physically. It was almost two years before I felt better emotionally. 

There are still small signs that I had a tumor. I have limited peripheral vision and lost much of the 3-D quality of my vision. I would describe what I see as a flat, shiny image like the kind you see when you look in a mirror. I had migraines for months until one smart neurologist prescribed me a medication that relieved most of my pain. 

I was so angry for so long. I was angry at everything and everyone.  

The only thing that helped was time. Sometimes there isn’t much you can do except allow yourself to feel what you are feeling and learn from it. 

And I learned so many things. I learned to judge people less. You never know what is going on in someone’s life. I learned compassion and, more importantly, I learned how to forgive. I had to realize that even though some people in my life didn’t react how I thought they should, it didn’t mean they didn’t care about me. It meant that they were human and just as fragile as I was. 

I feel wiser and more intuitive in a way I couldn’t have described before. I find myself thinking and saying things I would have been too self-centered to say before. It’s as if I experienced a life makeover, for the small price of a brain tumor. And you want to know what? I’m thankful for it. 

After almost two and-a-half years, my life has changed tremendously. The dark cloud the brain tumor cast over my life has diminished. In February, my fiancé and I decided to give it another go and we got married in the small civil ceremony we had wanted. We are now expecting our first daughter in November. 

As I type this, I can feel her moving her tiny hands and feet. It terrifies me that there are things like this that I won’t be able to protect her from. It frightens me that she will have to experience pain. I want to shield her from what I went through, but I know I can’t. It’s the human condition.

I have a new MRI scheduled for December and even though I’m expecting it to be clear, I’m still nervous. But it’s not controlling me. If there is one thing that the tumor taught me, it’s that all I can do is take it one day at a time and breathe. 

Posted in It Happened To Me