Three Years

Three years. 36 months. 1096 days.

That last one gets me. "Three years" and "36 months" seem too big to be very meaningful. Their size almost makes them feel arbitrary. I can't wrap my hands around either of them. 1096 days, though.. that I can feel. Nearly 1100 mornings that I have woken up, taken a shower (usually...), spent time thinking and working and breathing and crying and laughing. One thousand ninety six days since the morning I woke up and went to the hospital for brain surgery. Eleven hundred days since I realized how good it is to be alive.

I was going to write something about being surprised that this anniversary seems heavier, more thoughtful than the last two. It's true that on the one year anniversary, I was really just rehashing details of the day. Last year though, it seems like I may have been in a place similar to where I am now. These anniversaries are strange. Part of me feels ridiculous for making such a big deal out of it -- it's just a day, right? Maybe it would be "allowed" to be bigger if there had been a complication during the surgery or my recovery had been difficult or I had lost some ability or another or the tumor had been malignant. But a benign tumor that was easily plucked out of my head and was followed by a largely uncomplicated recovery? It doesn't seem like it should be a big deal.

But it is. Oh, it is. I separate my life into "before" and "after." I think about what could have been. I think about what was. I think about what is, and what could still be. I like to talk about my tumor. Trent, that little fucker, still a daily presence in my life. I still think about it constantly, I still dream about it often. It's not always bad... in fact, it rarely is. There are those moments of anxiety -- thinking about the roughly 20% chance of recurrence, thinking about not having routine MRIs anymore and thus still being prone to over-interpreting bodily sensations as possibly indicative of its return when in fact they are normal for a stressed, exhausted, chronically dehydrated graduate student. I didn't say much of anything about it to anyone, even after the fact, but there was a recurrence scare this past summer -- an uptick in lightheadedness and nausea and balance problems that went on long enough and didn't improve with changes in sleep, nutrition, and medications, so an MRI was ordered. I freaked out. Like a lot. And aside from my two best friends and my therapist, I didn't tell anyone that I was having the scan. Then I did a big medical records no-no and I requested my MRI images and the written report from the radiologist the next day, long before my doctor actually contacted me with the results. The written report wonderfully, beautifully, overwhelmingly said the words no evidence of recurrence. I read the report sitting by myself on the train going back to main campus from the hospital, where I had been at clerkship that morning. Yeah, pretty stupid. I have no idea what I would have done had the report said something else. But it didn't say something else, and I could breathe. Then I got home and I looked at the images -- between having a brain tumor and being a doctoral student in neuropsychology, I know a decent amount about looking at scans. I'm certainly not a neurologist or a radiologist, but I know enough to freak myself out. And so I did. In the scanner, my head was tilted, so all of the images were a little bit blurred. In all of my prior scans, a view in the sagittal plane got the clearest images of the tumor and cyst, and in the hundreds of images on this disk, there were no sagittal pictures. I lost my shit. What if it's there but it's buried and they can't see it because the image quality is poor and they didn't look in the right places and it's regrowing but it's tiny and it's hiding and they can't see it but it's there. This went on for awhile until my best friends lovingly and repeatedly reminded me that a radiologist would not call a scan clean, particularly a scan of someone who has already had a tumor resected, if the images weren't clear or if the tumor location wasn't adequately captured. I believed this eventually, but it took awhile. It took awhile to come down from that, to trust that nothing is there, that everything is still okay. And so, a good portion of this year has been spent realizing that this will always be a part of my life -- benign or malignant, "easy" recovery or one full of complications, this was, is, and always will be a part of me. I'm always going to carry a little bit of what if worry, and I have to give that worry a little space to exist, without hating it. And as such, the span of days from November 21st, when I waltzed in happily and confidently for an MRI and expected to be told that nothing had changed and I'd be seen again in three months and was instead told that I needed surgery ASAP, to January 16th, when I was released from the hospital... these days are powerful and heavy and full. January 11th, the most ridiculous pre-op day ever; January 12th, the surgery and waking up in the ICU; January 13th, "graduating" from the ICU and experiencing the most intensely agonizing pain I've ever felt in my life.... there's a reverence for these days that I hope I can always give space to.

I said it last year and I will say it again and again: this shit is surreal. Not only does it feel like it happened years ago, but sometimes I struggle to comprehend that it happened at all. Sometimes I'll reach back to itch my neck and I run into my scar, or I'll be putting my hair up and my fingers will fall into the indentation in the back of my head where there's no skull, or I'll lean my head back and misjudge the distance and smack it on a wall, directly hitting one of my titanium screws (yep, that happened a couple weeks ago), and then I'll say ridiculous things like, "I bruised my skull screw on a wall." I look at the picture of my incision less than a week after surgery and I can't believe it's me. I look at my MRI scans, knowing what I know now about the brain (which is a lot more than I knew three years ago) and I realize how bad the situation was. I read blogs of other people who have or have had brain tumors and I can't believe I can identify with them. A favorite blogger (www.thelizarmy.com) recently wrote about how, after her second brain surgery, nothing else would be scary ever again; nothing could compare to the anticipation and experience of surgery. Yes, yes, yes.

There's a weird sense a guilt that goes along with something being painful or scary or overwhelming after you've gone through such a major surgery -- like, how laughable is it that [insert event here] is scary when I've been wheeled into an OR and put to sleep, knowing that there was a chance I could have permanent double vision or have to relearn how to walk when I woke up? If I woke up? But of course, everything is relative. Something like brain surgery just gives you a really fucking weird lens to view everything through, to compare everything to, to compare yourself to. Where did that strength come from? How on earth did I get through that? Do I still have it? Or is it just like the adrenaline that surges and allows you to lift a car in an emergency when, under normal circumstances, there's no chance in hell you could do such a thing? I read the blog posts I made leading up to and right after the surgery and I'm amazed at how full of humor they are. Of course they were real and genuine, but they were also incomplete... I was playing the sarcastic, sassy side of it because that's what I needed to focus on and that's what I needed other people to have in mind when they were thinking about me going through this; I didn't want to be seen as scared or needy or whiny; I didn't want people to worry about me; I wanted them to see and send strength, not fear. But my god, how scared I was; how anxious, how overwhelmed. When I woke up from surgery, the first thing I did was look at the clock (wanting to know how much time I had "lost"), and then I cried. Sobbed. I so rarely cry in front of other people that I remember being shocked it was happening, and I know this breakdown was heavily facilitated by a lot of anesthesia and a lot of narcotics... there were two nurses in my room and they asked if I was in pain, they moved me around a little bit to change the pressure points, but I just kept saying "no" and sobbing. One nurse said to the other, "get her some ativan." When I could finally form words, I said, "I didn't think I was going to wake up." They were sweet and sympathetic -- "oh, so this is good crying!" (though I think they still gave me ativan). But that's the moment I was in. That's where and who I was. I have had the experience of opening my eyes, figuring out where I was, and realizing that I was alive when I thought there was a good chance I wouldn't be. That changes your entire world, benign and uncomplicated or not.

I'm rambling now. That's often the result of thinking about all of this. It's not bad, it's just big and strange. It's odd to think about it as my life and my story. But my story it is -- for the last 1096 days and for thousands more to come. I'm proud that it's mine, and I'm forever grateful for the incredible love and support I received during that time. It was, indeed, the most loved I have ever felt in my entire life. And to Trent, that wad of pissy, wayward cells that sent my world into a tailspin, I maintain the same feelings for you nearly four years after finding out about your existence and three years since your demise: thanks for the transformative life experience, but fuck you, dude.


(Do you ever hear a piece of music and feel like it was written for a certain experience you've had? This brief piece from The Theory of Everything is that for me -- I heard it and thought, "This is brain surgery.")