I am a hypochondriac's worst nightmare.
The symptoms of brain cancer are many and vary depending on the location of the tumor. Most of them are very mild, and few of them uniquely characteristic. Severe headaches and seizures tend to be the big ones. I, with my 8cm frontal lobe tumor, had only occasional mild headaches. I have never had a seizure, and my doctors are so confident that my risk is so low they haven't even prescribed anti-seizure medications.
The symptoms that finally brought me to a doctor were all visual. Remember, the frontal lobe is located (understandably) at the front of the brain. The occipital lobe, which controls visual functions, is at the back. My cancer had not reached the occipital lobe, but it had applied so much pressure on that part of my brain (along with my right temporal) that it could no longer function properly. Even then, when I went in for my MRI we were looking for an intrusive blood vessel near the optic nerves. No one had any suspicion of cancer until we saw the results of the MRI. Even then, those symptoms only emerged within the last six months or so. My doctors believe I have had this cancer for longer than 15 years, with only subtle symptoms that no one would ever attribute to cancer.
In other words, you can be a young man with low risk of any cancer, very little family history of it, yet still have a tumor the size of a lemon buried in your brain, of which you are completely unaware.
I'd like to recommend that everyone get a cranial MRI at some point during their teen or young adult years but there'd be little point to it. The cancer starts out microscopic, or could form later, and the vast majority of people will show up clean for their entire lives. Add to that the cost of an MRI - especially if you can't justify it to your insurance company - and it quickly becomes impractical, even for a hypochondriac.
So let's look at some of my symptoms and see if we can't get some of you to a neurologist.
My parents tell me that my personality shifted dramatically when I was five years old. I became very serious. This is our first indication that something might be wrong. Then again, maybe it wasn't. I was five years old, and we had just moved for the second time in my life. My personality was hardly set in stone. My parents took me to see a therapist when I was about seven years old. That worked out for three sessions, after which I found out he'd been telling my parents everything, and my parents wanted to inform me how wrong I was. I never trusted him again, and from that point forward I had trouble opening up to anyone.
My teenage years were very difficult. A darkness settled over me, and its tendrils dug deep. I hated myself. I thought I was ugly, and inadequate, and that anyone who might possibly like me was either wrong or deceived by the mask I wore. I became suicidal, and while I never made an attempt on my own life I thought about it on a daily basis. But I didn't want to kill myself. I wanted to die. Back then I was an agnostic as well, fairly certain that there wasn't a God but still allowing for the possibility, as I do today. I felt that in the small chance I was wrong, in that infinitesimally unlikely case that there might be an afterlife, it would be really hard to justify killing myself. Or worse, if I had no guarantee there was no afterlife, I had no guarantee that suicide wouldn't send me to my own private hell: living that same life I had tried to escape but with no way out at all. After I graduated from high school I started to see another therapist. It took me a very long time to trust him, and there are still somethings, after ten years, that I want to tell him but haven't. He did write me a prescription for wellbutrin, which helped drive away those dark thoughts. All the while I thought that some day I would get off the drugs. Some day I would figure out what was causing my despair and resolve that, so that I wasn't depressed anymore. Little did I know that it may have been the cancer all along. Not the sort of thing one can fix with soul-searching conversation or psychological exercises.
I think those days contemplating death have helped me to accept my sickness. I'm not as afraid of the abyss as I might otherwise be.
However I'm still not sure that the depression was the cancer's fault. At least, not entirely. I think it may have simply made me more vulnerable.
My brother left home as soon as he turned 18. I still lived with my parents whenever I was home from college until I graduated, found a job close to home, and continued to work there until I was 24 and bought my own place. I haven't discussed this with my brother and do not thing he would care to. I have discussed it with my current therapist, one I started seeing as I began my radiation and chemotherapy treatment.
For some reason, I have allowed myself to trust her. Maybe this whole process has made me feel more vulnerable, or maybe in light of my current situation, it seems silly to care about having my inner-most secrets spilled out for all the world to see. She is aware of my trouble with previous therapists, and so far has done nothing to shake my trust in her. On the contrary, she has shown me that she is dedicated to that trust.
And so she and I have dug deeper, and uncovered some scars I didn't know I had. Some resentment, some fear, and a whole lot of anger, relating to my family life. Unrelated to the cancer and still some tender nerves, so I don't think I'll go too deeply into detail on this blog. Suffice it to say that while my parents have been wonderful providing me with material support, there are some old and sturdy emotional barriers to overcome. Weights I've been carrying so long I have forgotten I had them. Worse, I have forgotten how to put them down, and now they are keeping me from truly feeling the weight of my cancer. I am not in denial. I know that I am very sick. I still view myself as a character in a book or a movie, one whom I would like to succeed but in whom I have little investment.
It's a cliche to blame one's parents and bottle up their emotions but there you have it.
I've covered my more recent symptoms already, the visual anomalies, the optical migraines, the blind spots, the pressure in the ear, the dizziness, the headaches. All of those are recent. In the past, all I would experience would be the occasional shadowed circle in my field of vision, but only faintly and only when I was very tired. I blamed my strabismus for those. After all, why shouldn't there be pressure in my eyes? I'd had surgery on them. There had to have been some scarring. Certainly I had no reason to suspect it was my brain swelling.
I had a few other symptoms that were a little more unusual, but still minor enough that they didn't overly concern me, or otherwise seemed mere quirks. However I justified them to myself, I never suspected they were part of a disease. Some of them may indeed be totally unrelated.
For much of my life I've had a small facial tick, like an itch in my nose that I try to scratch by sniffing. I'd have the occasional minor spasm, like my leg jerking once while I was in bed (which I believed to be RLS), or a small muscle repeatedly contracting and relaxing outside of my control. My fingers would tremble if I tried to stretch them all out and curl my ring finger. From time to time I would lose nearly all hearing in one ear, save for a single, loud, constant tone, which would usually fade after a few seconds, after which my hearing would return. A few times the tone grew quieter but remained, permanently, as tinnitus. In retrospect, that may have been nerve damage or death due to cranial pressure. It did become more common and intense over the last several years.
I also have a problem with clutter. In what may be the clearest indication of something malfunctioning, my living areas would usually fill with "stuff." Items, trash, generic clutter. I saw that Hoarders show and wondered if maybe that was my problem, though my case never grew quite that severe. Some of the key symptoms were missing. I felt no real attachment to the stuff I had. I was reluctant to throw out papers without looking them over, not because I thought they might be important, but because my parents had ingrained in me a deep fear of identity theft. As my father helped me clean up my condo in the wake of my surgery, he pointed out something I never really noticed before. My clutter was extremely organized. Sure everything was in a pile, but the piles were reasonable, and useful. All of my mail in one place. All of my CDs in another. All of the leftover plastic grocery bags together in the corner. It wasn't a matter of sheer sloth or chaos. Instead, I was missing that part of most functioning adults that tells them when enough is enough, and they really ought to get rid of that pile. I know that it looks quite a lot like sloth. I, myself, always just assumed I was lazy. I had no reason not to.
Most of my life with this cancer, and still the symptoms are so subtle that even in retrospect I can't attribute anything directly to the disease.
Try not to think about that too hard the next time you need a tylenol.