Hey everyone,

I’m 21, living in the NYC area, and honestly, this whole situation just completely sucks. I'm posting this because regular Show or the Magic School Bus doesn't hold a candle to how crazy of an adventure this has been, and I'm just looking for people my age who can relate or want to swap stories.

Back in May of 2025, I underwent a major awake brain surgery to remove a large tumor in my right frontal lobe (a Grade 2 IDH-mutant astrocytoma). For years before that, from about 2018 on, I thought I was just a toxic person. I pushed people away, acted out of character, and completely ruined relationships—including losing the girl I thought I’d spend the rest of my life with. The hardest pill to swallow is knowing that the people I hurt only remember the negative, tumor-driven version of me, even though once it was cut out, I immediately felt like my true self again. I don't blame the tumor, and I don't expect them to fully understand, but carrying that reality is heavy .

To double down on everything, my mental health has been a brutal, two-front war. My doctors confirmed that the tumor itself directly warped my mood and emotional control for years due to where it was sitting in my frontal lobe. 

I dealt with a lot of heavy domestic and academic trauma growing up from age 5 to 20, but I adapted to that as it happened. The real trip came recently. For a while, I thought I was picking up the pieces. But during my recent routine scan as of June 24th, 2026, we found out the tumor is already growing back.

It feels incredibly heavy to face a recurrence at 21, a point in life where I’m supposed to be figuring out my future, working out, and figuring out who I am. Instead, I’m staring down a massive gauntlet of targeted daily oncology meds, multiple anti-seizure medications, and constant lab work monitoring my liver, not to mention frequent mri’s.

Before all of this, I used to be highly academically skilled, athletic, and possessed a nearly photographic memory—there wasn’t a problem I couldn't solve logically or emotionally, and I was incredibly fluent with my words and reading.I’ve always had an incredibly strong competitive edge and a love for sports, and I’m not the type to back down or use this diagnosis as an excuse for pity. My surgeon was an absolute perfectionist and completely awesome, which is why what was supposed to be a standard 6-hour operation ended up turning into a grueling 12-hour surgery. Because of his dedication, he was able to successfully remove 95% of the tumor, leaving behind only a 5% residual. But brain surgery completely messes with your neural pathways. After the operation, I was paralyzed on my left side for about two weeks. Fighting to get that movement back was hard enough, and the reality is my left side will never have the strength it used to. I’m primarily a south paw by the way. 

I haven't lost my intelligence or the maturity I've gained for my age, and I still know exactly what is right and wrong in my heart when it comes to any situation. But expressing it is a whole different story now. It's getting harder to speak coherently, find the right words, or remember songs and events as my memories fade quicker than before. It sucks because doing both used to be effortless, and now I can't just pick up on things the way I used to. 

As much as I want to say I'm not going to let this stop me—and I truly do not want to let it—I've had to humble myself. I have to understand that I don't have the power to predict what might happen if I just try to push through. Doing that now would unfortunately just be reckless. Even when I feel like I'm on top of the world, a seizure aura will hit out of nowhere and immediately put me down, forcing a humility on me in a way that is far from idealistic.

Beyond that, the restrictions on my daily life are just horrible to deal with. I used to want to enjoy life to the absolute fullest, somewhat chasing that adrenaline rush—swimming at the beach, skydiving, driving fast cars, or working out hard—but chasing that competitive edge is a massive risk now because extreme exertion triggers my seizure auras. You can't exactly take Valtoco a thousand feet in the air while free-falling. I used to enjoy being an alcohol connoisseur, never to get drunk, but just appreciating it; now that’s strictly limited. Even traveling is a massive hurdle between managing intracranial pressure on a plane, sticking to tight sleep schedules to prevent seizures, and trying to cross borders with a controlled, schedule-IV medication regimen.

Right now, I'm navigating a mountain of daily meds—a targeted oncology therapy in tandem with a heavy anti-seizure regimen (Xcopri, Lacosamide, Valtoco as needed) and statins. Because of the medications I have to take, my personal and social life have been completely flipped upside down. The treatment protocol heavily restricts my lifestyle and completely cross-wires with human intimacy—meaning casual or routine sexual experiences and specific kinks I used to enjoy are completely off the table due to high chemical health risks, let alone my potential partner’s health. Sometimes it feels like every ounce of normalcy or adult freedom has been stripped away. I’m the oldest sibling, and a big reason I even agreed to the first surgery was seeing my mother begging at my bedside, and wanting to be there to help my siblings grow up. But honestly, having bordered death in the ICU and on the operating table, I felt a profound peace that's hard to explain. If it comes back down the line, I know where I stand on further surgeries or chemo. The only thing I really want right now is to find people who understand what it's like to face these kinds of intense, invisible boundaries so young.

I'm posting this because I just want to talk to people who can relate. It's impossible to explain the exhaustion of this to people who haven't been through it.

If you are a young adult navigating cancer, brain tumors, or massive health crises while trying to maintain your sanity, please reach out. I’m completely down to chat online, swap stories, vent, or potentially meet up for a coffee/hangout somewhere in NYC, Hoboken, or Jersey City.

Slide into my DMs if you want to connect. Thanks for reading.

UPDATE: The Invisible Boundaries of Pity

There is another incredibly heavy part of this journey that I didn't mention, and it’s how the people closest to me look at me and treat me now.

To be completely honest, it feels discriminatory. People treat me like I am made of glass. And as much as it’s a harsh reality that I am physically fragile right now, I absolutely hate being treated that way. I try my best not to get angry or upset with them because I know, deep down,it comes from a place of care. But surviving a literal brain tumor, waking up from an ICU bed, and then having to exist around people who have absolutely no idea what this actually feels like? Seeing that constant look of pity on their faces is exhausting and deeply upsetting.

I don't want your pity. I am trying to learn how to be capable, not dependent.

What drives me insane is that I feel like I've lost my voice to this diagnosis. No matter how many times I explicitly ask my family not to do or say certain things, they just override my boundaries because they think they know what's right for me, or what I need.

I don’t want to be coddled. I prefer my life to be my responsibility, even if I lapse, even if I struggle, and even if I make mistakes. This is still my life, and these are still my choices. Just because we share blood or DNA does not give you a blank check to dictate my life or have a say in my choices—especially given the history of everything I've already survived in my past, and especially because you have absolutely no concept of what it takes to fight this battle every single day.

I have always been the type of guy who handles things entirely on my own. Life taught me early on to rely strictly on myself, no matter how painful or heavy things got.

Of course, the girl I mentioned earlier—the love of my life—was the one exception. She was someone I truly would have let in and included in this battle. But that’s no longer an option. You just don’t find people like her these days; she was entirely unique. No one else in the world could ever hold a candle to her. I might see tiny remnants of her personality in other people, but it’ll never be her, and I don't know if anyone else will ever be willing or able to care about me with the sheer depth we shared.

Given that is no longer an option, I’ve locked back into my independence.I don't need anyone else's help to get through this—especially not from the people who scorned or doubted me in the past.

Don't get me wrong: having someone in your corner who can just offer their presence, love, or an outside perspective is a beautiful thing, even if they don't fully understand what’s happening inside my head. I welcome that.

I also have to give credit where it's due: I am profoundly thankful for every single person who aided me in that hospital. Every nurse, social worker, physical therapist, therapist, oncologist, surgeon, and surgical assistant—all the way down to the janitors and the staff who served breakfast, lunch, and dinner. I was cool with every single member of the staff because they all pitched in, not just for me, but for everyone on the floor. All of my specialists and doctors have a deep educational and personal understanding of this fight because of the other patients they care for. I am genuinely happy to have had every single staff member who assisted me, even the ones who rushed things or made minor mistakes. I only wish I’d had the chance to actually talk with some of my fellow residents in the other rooms—whether we were in the ICU, the prep floor waiting for an operating room to open up, or in rehab.

I even extend that thanks to my family. Despite how they treated me when I was younger, and despite the fact that they are suddenly trying to make up for it all now because of the absolute bomb that was dropped on us, they showed up. They brought food and fetched the things I needed from home, and I recognize that.

But man, hospital life will force a level of humility on you that you cannot prepare for. Having another human being washing your balls, your butt, and literally wiping your ass on the toilet is truly fucking humbling. Thank heavens I completely groomed myself before checking into the hospital!

On another funny note: I’ve been complimented on my hair my entire life. I had zero reservations about them giving me a buzz cut for ease of access during the surgery, and I figured it was just time for a regrow anyway. But apparently, right before they wheeled me through the double doors, my surgeon told me my mother gave the medical team a terrifying death stare and strictly ordered them to "only take off what is absolutely necessary." Oh well.

But at the end of the day, I am the only one physically and mentally dealing with this tumor. It’s my life, it’s my fight, and it’s up to me to navigate it—not anyone else's opinions, takes, or control.

That being said, I am always going to look for camaraderie and share things with the people who actually understand what it takes to survive this. Whether it's online or in person, I want to find that connection with others who get it—regardless of age, race, sex, or creed. If you're fighting this fight, you're my people.