That Time When I Found Out I Have a Tumor in My Head

How can I begin to tell you about the first time I saw an image of Jolens the Tumor, also known as the Vestibular Schwannoma in my head? Let me explain what a Vestibular Schwannoma is. It is generally a non-cancerous tumor that develops in the vestibular nerve, which connects the inner ear to the brain. My tumor grew on the left side of my head. It’s a slow-growing tumor, but the thing is it does grow. If it develops large enough, it can crush the brainstem, which can be life-threatening.

THE INTERMITTENT HEARING PROBLEM

So around two years ago, I complained about having trouble hearing in my left ear. My hearing from my left ear became muffled in comparison to my right. I asked our EENT friend as to why this was the case. He advised me to undergo a hearing test, which I did, and the results revealed that I had a little hearing loss in my left ear. It eventually went away, and my hearing returned to normal. Until last year, 2023, when the muffled hearing in my left ear returned. He asked me to take the hearing test again, and the results were the same as my first hearing test two years ago. I kind of brushed it off, despite the fact that when I attend events or concerts that clearly emit loud sounds, I have to wear ear plugs because my hearing becomes sensitive.

EEG AND MRI

I decided to see a neurologist after noticing that the left side of my face would become colder and less sensitive than the right side. I can still move it, and it’s not completely numb; I just know it was less sensitive, and I can feel tingling on that region of my face. My neurologist, Dra. Picar, advised that I get an EEG and an MRI with contrast. I took the EEG initially, and it came out normal. I had an MRI with contrast after visiting La Union for my birthday weekend. After three days, I saw the first photo of my tumor. A 2.3 cm tumor was in my head, partially covering my left ear canal. I am not sure what my initial reaction was. I recall my neuro expressing that seeing the tumor was something she hoped to avoid. But, there it was. I left her clinic remembering her telling me that it needed to be surgically removed. I showed my mother, a doctor, my MRI results and told her Dr. Picar’s recommendation to have it surgically removed. She was extremely opposed to it and suggested that we seek a second opinion.

THE GAMMA KNIFE RADIOSURGERY

On social media, I announced my tumor diagnosis. I figured I didn’t want to answer questions one by one since it would be stressful. I decided to just post about it openly so that my friends and family could read about it all at once. I’m grateful that the majority of the people I’m connected with on social media heard my message loud and clear, and that virtually everyone was kind enough to simply give their best wishes and “get well soons.” Because of my public declaration, a friend in the States was able to connect me with Dr. Gap Legaspi, the Director of PGH and a neurosurgeon. I met with him, and he mentioned that they could perform a surgical removal of the tumor, but he also outlined the potential consequences. He also discussed another treatment that can be used to halt the tumor from growing using gamma rays, which is known as Gamma Knife Radiosurgery. He asked me to meet Dr. Ted Vesagas, a neurosurgeon at Cardinal Santos Hospital and the director of the Gamma Knife Center of the Philippines. I scheduled a consult and Dr. Ted articulately explained how the procedure was going to happen. He also informed of how much it would cost and its difference from having an invasive procedure. Even though we know that we still didn’t have enough money to pay for the procedure, my mother and I opted for it. We were sold that it was the best route for me.

BEAT IT, JOLENS THE TUMOR! FUNDRAISER

To be honest, I do not have that money in my bank account. Never had I saved such a large sum of money. Rather than wallowing and feeling sorry for myself about where I would get the finances for my treatment, I thought about organizing a fund raiser. I tapped friends in the music industry to help me by performing at 12 Monkeys Bar and Restaurant for the two-night fundraiser. It was challenging to create a show while still dealing with an issue in my head…literally, but by the grace of God (and the owners of the bar, my musician friends, and their management), I was able to do so. It was a two-night event that I co-hosted with my friend Macoy Averilla, a.k.a. Macoy Dubs. On night one, Poppert Bernadas, Nameless Kids, Basti Artadi, Moonstar88, and Sandwich performed. On night two, Acel Bisa-van Ommen, Barbie Almalbis, Ice Seguerra, Hilera with Kylie Padilla, and Razorback took the stage. Both nights were emotional and enjoyable, especially seeing my friends who made time in their schedules to play for the fundraiser. I owe them a lot.

Half of the funds for my procedure were raised through the shows, with the other half coming from donations from friends and family. Some days, I just left amazed by people’s generosity and goodwill. I never gave up hope since I was no longer battling solely for myself, but also for those who helped me. “Ang tapang tapang mo” was a message I received from multiple individuals, but I could only respond that it was the only way for me to be… brave. I assume it was because I never gave myself time to think about the problem and instead focused on how I could be better.

I GOT SCREWED!

I was requested to arrive at the Gamma Knife Center at 7 a.m. on January 26, 2024. Nurse Mel asked that I fast the night before the procedure. I was greeted by many nurses and a doctor, who delivered local anesthesia to my head. The local anesthesia was for the head frame, which was attached to my head to keep it from moving during treatment. The metal head frame remained magnetically linked to the Gamma Knife equipment throughout the treatment. The anesthesia prevented me from feeling the discomfort from the screws, but I could feel the heaviness of the frame. I first underwent an MRI with contrast to assess the tumor and obtain head imaging so that the neuro team could develop a treatment strategy. After approximately an hour, I was led into the Gamma Knife chamber and lied down on the sliding table. The Gamma Knife machine made me think of an MRI machine. Once my head was secured to the machine, the bed slid into the Gamma Knife unit. Before entering the room, I asked my nurses whether I could listen to my playlist of K-pop, Rock, and R&B songs, and thankfully, they answered “yes.” So, when I was in the machine for around two and a half hours, I listened to music of BTS, Seventeen, Stray Kids, Foo Fighters, Sandwich, Justin Timberlake, and more. Following the procedure, the head frame was removed, and the screw wounds were treated. While driving home, I began to feel sick while also experiencing severe head pain. When I arrived home, I was constantly vomiting and unable to eat. I was already hypoglycemic because I hadn’t eaten anything since 7 a.m. It felt like the worst hangover I’d ever had in my life. I forced myself to eat crackers so I could take my medicine. The nausea and headache persisted the next day, but they were less severe than the day before.

Currently, I’m living my life as if there is no tumor in my head, but the truth is that Jolens remains present, though hopefully, it has stopped developing. I will never regain full hearing in my left ear, so I am classified as a person with disability. Occasionally, the left side of my face still feels cold. These sensations are already considered chronic because the tumor has damaged several nerves in my head. But I’m grateful for a right ear that can hear wonderfully, and that these chronic ailments don’t immobilize me. I wouldn’t have been able to do what I did without the assistance of so many people. I am eternally appreciative for all of the support that has been sent my way. I’m attempting to live a stress-free lifestyle because, as a result of what happened to me, I’ve understood that there are more serious issues that require my attention than wars that I should not be fighting. I still worry about a lot of things, but if you had told me two years ago that I would be able to beat a tumor, I would not have believed you 💜.