There’s a CD with MRI scans sitting on my desk—sealed and unopened. Today, it’s been exactly a week. The results that will tell what is happening in my head. Is my acoustic neuroma—a tumor also known as a vestibular schwannoma— “moving” in any direction or just chilling in there? That paper envelope, more precisely the CD it contains, holds the data that will ground me—in a good way or a bad way—I don’t know yet. I’m afraid to look at it!
It feels like I’m in the middle of a cosmic coin toss, frozen just before the flip lands. If I don’t look, there’s still a chance that my protocol—my disciplined and borderline-religious way of life—might be working. That the tumor is shrinking. Or even just staying still. If I do look, that possibility might vanish. It’s like Schrödinger’s cat, but instead of a box, it’s an MRI viewer. Instead of a cat, it’s my faith.
Well, if by any chance a thought already came into your mind like, “Fool, he thinks he can reverse it just by eating some magical superfood…” or something similar—let’s get something straight. Those are the kinds of thoughts that are constantly in my own mind, and they have every right to exist in yours too. My so called “life protocol” is a little more complex and broad than what that thought implies, but that’s not the point—I might get into that some other time. The point is, even knowing the extremely slim chances that I have any control over those rogue Schwann cells—it still gives me hope. And that’s exactly what I need right now. A tiny glimmer of hope. A tiny sense of control that my future is not just a leaf in the wind. That my actions matter. That I’m still the master of my own body. And that’s what keeps me sane these days. It’s a huge thing for me—even if it’s built on pillars of “rare medical miracles” and “it could potentially work—it worked on our mice when we overdosed them—but we don’t know about humans”.
Everyone deals with hard times differently. If you like living, you don’t really have much of a choice other than to try to find a way through. Or, as grim as it sounds—die trying. The hardest thing, at least for me, was (and a lot of the time still is) staying positive, optimistic, and motivated enough to keep my morale up and keep moving forward. So, in a quest to find my strength, I turned inward. If there’s anyone on this earth who cares enough for me and my health to not turn his back, but instead go the extra mile—that’s definitely, and foremost, me. That’s how I eventually made a pact with myself that we—I, myself, and the healthy majority of my body—will do everything within our power to tip the scale in our favor and do our best to fix the damage that has been done. Gradually, this pact grew into a kind of religion for me—something I’ve placed my last hopes in.
It’s a strange feeling, actually. I’ve never been much of a religious person. I didn’t believe much in things that hadn’t been indisputably proven to me. I was always the one who questioned everything, down to existence itself. A man of science—believing only in hard evidence. But strangely, now I’ve built my own religion. Almost like an obsession, at times even like a blind belief, around this vague promise to myself: that I—and only I—have the power to do what is best for me and my body.
Now there’s this thing on my table that has the power to prove my faith paid off. That I’m not totally crazy for believing in myself. That I am, in fact, the master of my own body. Or—on the other hand—it can shatter the only source of strength I have left. It’s a real mind-fuck, just thinking about it. And what’s worse—even if it’s something in between—say, the tumor is just sitting there, not growing—I can’t even imagine whether that will give me more strength and motivation, or if it will just slam me into the ground. And that scares me.
I think I have a great radiation oncologist. She seems experienced and knowledgeable about cases like mine. But in two weeks, when I have my next appointment, she’ll put me in front of a hard decision—should we irradiate it or not? And I’m the one who will have to decide.
Sometimes I imagine she just really wants to fry my brain as soon as possible. Just like my neurosurgeon, who I picture as being more than happy to crack my head open and have a little peek. In reality, they’re not like that—this is just my funny take on a very serious matter. Well, anyway, it all leaves me pretty confused. My symptoms aren’t fun, but they’re still very manageable compared to what I’ve read others go through after treatments. I sometimes wonder if there’s a medical bias, and doctors just want to do what they know best—what they probably do every day, what’s been proven to them to be “good enough” in most cases. But is “good enough” really the best for my case? I don’t want to fall into some “good enough” treatment category. Who would? And, am I even a typical case? Just look at the average vestibular schwannoma patient—by age alone, I’m not even close. So… are average actions still the best actions for me? Well—I don’t know—and that bugs me.
...I did drift off there, didn’t I? I don’t even know what I wanted to say. Probably just that there’s a tough decision in front of me and I hate that I don’t have clear answers to base a logical easy choice on. And what’s even worse—there’s a real chance the MRI will show the tumor is just sitting there, waiting. Doing nothing. Yes, schwannomas do that sometimes. Apparently, it’s not so uncommon. Well, that would actually count as good news by my standards—but it wouldn’t make the decision in front of me any easier.
Anyway—I don’t
know what I’ll see when I finally open those scans. Maybe they’ll shake me.
Maybe they’ll prove me right. Maybe they’ll just sit there, cold and
inconclusive. But today, I still have this liminal space—this strange, sacred
moment before knowing. And in this moment, my faith still stands. Not because I
know the outcome. But because I’ve built something I can hold onto—even when
everything seems like it’s going against me.