Five years later

A few months ago, I started a new job in research at University Hospital. I’m working in cardiothoracic surgery, which is a totally new area for me, but I’m really enjoying it. I was recently given the task of consenting patients for a cardiac tissue study, which typically requires that I meet with the patient during their pre-op appointment the day before surgery. I’ve primarily been doing data extraction, so on my first day of consenting, I was navigating the winding hallways of the hospital in search of pre-op, thinking about how glad I was for this new opportunity to have some regular contact with other humans. When I walked past the patient elevators, I was struck with a familiarity that I wasn’t expecting, and I realized quickly that I was going to the same pre-op area I had gone to the morning of my surgery. For whatever reason, I had just assumed that there were different pre-op areas for different types of procedures, so it hadn’t even occurred to me that I would be heading to the same place for cardiothoracic cases. As soon as I rounded the last corner and saw the check-in desk, my eyes welled up, my heart started pounding, and I felt my face flush. I instantly remembered exactly what it felt like to stand at that desk at 6am, waiting for instruction. I remembered exactly where my stepmom sat and where I put my bags down in the waiting room. I walked through the double doors clutching my clipboard and willing myself to look professional, and every part of me viscerally remembered being taken back to an exam room that morning, being given a gown, going into the bathroom to change and just staring at myself in the mirror thinking what the fuck is about to happen? I remembered sitting in silence with my dad, neither of us knowing what to say as we waited anxiously for 7:30am to come. I remembered getting my IV placed and wondering, after that tiny needle pinch, what my body was going to feel like several hours later… what tubes and wires would be attached to me, what the pain would be like. I remember being consented for a tissue banking study that was very similar to the one I was there to discuss with a patient. The last time I was in that pre-op area was five years ago today.

Five years. There’s something that feels big and solid about five years. Maybe I can worry a little bit less about recurrence (even though the chances of that are so slight to begin with); maybe this is the point where these thoughts will gradually start to lose their intensity. The more time that passes, the more surreal it seems, but simultaneously, the memories are still so present and vivid. I often think of the phrase “I had a brain tumor,” and roll the words around in my head and in my mouth, like I’m trying to convince myself that it actually happened. I look forward to the rare opportunity to say “hemangioblastoma,” because it allows a brief moment of ownership of this thing that’s such a huge part of who I am, but that I don’t get to talk about very much anymore. Hemangioblastoma. A brain tumor. It’s such a crazy combination of ever-present and totally out of reach and fantasy-like.

I’m conscious of the fact that I’m two paragraphs in and I haven’t said anything funny yet. I’m a hell of a lot more comfortable sharing my thoughts after they’ve been thoroughly soaked in sass and sarcasm and vulgarity; I’m less comfortable sharing a post that says hey, it’s five years later and there are some things I’m still really struggling with. I didn’t do a blog post last year, but I did write a little reflection on facebook, and I said something about the blinders that I had on in 2011 and 2012, that I think I had to have in order to emotionally survive the diagnosis and surgery, are still gradually shedding. The first few years, it was all “Whoa! Wow! Holy shit! That was crazy!” and now it’s more like “Whoa. Wow. Holy shit. That was crazy.” Five years later and there are parts of this experience that I think I’m just realizing were really goddamn scary. I’m happy to be where I am, of course. I promise I’m not sitting around, spending this whole day in panicked tears… I’m okay. But it is a harder day than I wish it was.

I was determined not to get anxious for brainiversary this year. I was going to focus on strength and success and health and courage. Those things are all present for me this morning for sure, but that “no anxiety” thing may have been mildly unrealistic. I’m feeling pretty tender this morning, as I have for the last week or so. I’m trying to be okay with that, and to just let it be. This is the first year since surgery that the dates are falling on the same days as they did in 2012, so that makes all of these memories feel even more salient. This is also the first year that I’m in University Hospital on the anniversary, and every other day as well… the office I work in is on the same floor as the Neuro Critical Care (ICU) and Acute Care units where I stayed; it’s on the same floor as the ORs. These aren’t bad things at all, and in fact I think the exposure has been good for me, but walking past (not even in!) those units, even being in other ICUs and hearing the beeps and smelling the smells… it’s been a little rough. I might need to recalibrate my expectations a bit and say that I’m going to spend the rest of the day/week/year/lifetime accepting and honoring the anxiety associated with these anniversaries, rather than waiting for it to no longer be a big deal.

One of the things I continue to struggle with is not knowing what happened while I was under anesthesia. I mean… I had brain surgery. They took a tumor out. I’ve got that part. But I spend way more time than I should still thinking about who was in the room, who saw my body, who touched my body, who placed tubes and lines, how they repositioned my body since my last memory is being on my back, but I was on my stomach for the surgery. Did I have any concerning bleeding? What did I look like intubated? Was I extubated easily? Did I make any weird noises or say anything crazy? I know this is a well-kept secret, but I’m a really big fan of being in control (whaaaat? I know. You’re shocked.) and I really, really have difficulty with being entirely unaware of and essentially not present for such a critical handful of hours of my life. I can’t stand it. I am, and have always been, anxious and self-conscious enough about my body that I find it incredibly difficult to tolerate the not knowing. I was at work earlier this week, reading through medical records to collect study data… and it suddenly occurred to me (five goddamn motherfucking years later) that I should request a copy of my operative report. Jesus, you guys. How have I never thought of this?! I haven’t received it yet, but I’m really hoping that it will provide me with a detailed enough description to calm these spinning thoughts.

I still think and dream about all of this a lot. The vast majority of the time, it isn’t distressing, it’s just processing. But I don’t think I’ve had a single day in the last five years that it hasn’t been on my mind at some point, in some way. I’m tempted to write about all the details I’m remembering today… but I remember all the things I’ve remembered and written about on the last four anniversaries and in tons of posts before that; I’m sure no one needs to hear those rehashed. My 3-year anniversary post is still unbelievably relevant, so I feel like maybe I should just direct you there, like I did last year, and tell you to add yet another 365 days to the first paragraph. There haven’t been any brain-related changes in the past year to report… I still have mild balance issues, especially when I’m tired, and I still tend to hit at least one wall when I first get up in the morning. My skull screws still hurt periodically, especially when it’s cold out. My neck is still a hot mess. I still use my skull hole as a party trick, especially when said partygoers are intoxicated (the reaction never. gets. old.). I’m still struggling with the enormous amount of weight I gained after surgery. I still get all warm and fuzzy and burst with affection when I think about my surgeon… that brilliant, incredible little imp of a man. A few weeks ago, I went to lay my head back on my couch, but the cushion had gotten moved, and I (lightly) hit the back of my head on the frame… and then spent the next several days both feeling and hearing crackling in my skull-less region. Still happens, still gross. I don’t have anything new to say, but I suppose that’s the point. Life is still moving. 2016 was a heinous wench of a year, but I’m hanging in there and making good changes and continuing to move forward. I guess I keep waiting for the year when I post a blog saying that everything is perfect and fantastic and I can look back on brain surgery as nothing more than a positive, shiny memory… but that’s pretty damn ridiculous, isn’t it? I guess the reality is that the processing is still messy and strange and sometimes uncomfortable, but also still (and always) overflowing with amazement and gratitude and grace. I’ll take it.

(Okay, I seriously cannot stand the lack of humor in this shit. Here’s one of my favorite Hyperbole and a Half posts for good measure: http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html)