Long time no blog, friends. I've been thinking about doing some writing for several weeks now and an obnoxious trip to the ER last night has become my inspiration to finally do it...
I'm now nearly 5 1/2 months post brain surgery which is frigging ridiculous. I was so convinced that, being on medical leave, this past semester and the summer would crawl by at a miserable pace. Not so! I've officially been off of medical leave since the beginning of May and the new semester starts in less than two months. Disappearance of time. Insane.
Last night's drama aside (I'll get to that in a minute), I've been feeling pretty damn good. A lot more energy, a lot less muscle weakness and fatigue. I've been swimming laps with two dear friends recently and, although we've only gone a couple times, I'm loving it (I've been a water monster my whole life and have had quite the swimming hiatus in recent years... feels SO good to be at it again). The first time we went, I was utterly shocked that I was able to be that physically active in the late afternoon and then go home and continue to be focused and active and productive throughout the evening. Pre-surgery, that amount of physical activity would have been barely possible in and of itself, and if I had gotten through it, I would have gone home, felt awful, and gone to sleep immediately. Whether this is a change based on my patched heart, my tumor-less cerebellum, or a combination of the two (which would make the most sense), it's a very welcome shift in how I'm able to function.
Last time I posted (I think), I mentioned the weird vision issues I was continuing to have and that I was being sent to a neuro-opthamologist. That never ended up happening -- I never received the actual referral call and then chose not to follow up with it because, naturally, the visual disturbance didn't happen again after I talked to my neurosurgeon's nurse. About 4-5 weeks later, I had another visual "episode" but again didn't follow up with it since it had been so long since the last one and I figured my brain was just still healing and as long as the episodes were spaced out, it was all good. Then it happened again yesterday when I was at a coffeeshop working with Emilie -- it had been probably 6-7 weeks since the last time. The whole vision loss process happened as it has in the past... a weird "cut" in my vision in my right eye that seems most accurately described as a kaleidoscope that gradually gets bigger, to the point that I couldn't see portions of my hand in front of my face, could only see one of Em's eyes, and so on. After that began to dissipate, I completely lost peripheral vision in that eye. After about 40 minutes, my vision was almost completely back to normal. That's how it usually goes. What has never happened before that did happen yesterday was the blinding headache that started out of nowhere about 20-30 minutes later. While my headaches have decreased tremendously since surgery, I still have absolutely insane seasonal allergies and get pretty vicious sinus headaches fairly often. That said, I do not get legitimate migraines with any regularity. The vision thing ended, the headache started, and within about 20 minutes I was on my way home. My whole body was tingly while I was driving and by time I finally got to my apartment, I was nauseated and lightheaded and felt like I couldn't possibly lie down quickly enough. I chugged some water and passed out on the couch.... for nearly 3 freaking hours. I'm not a daytime sleeper at ALL, so napping is a definite sign that I'm feeling like shit.
When I woke up from the nap of epic proportions, I was feeling really groggy, weak, and just out of it in general. Figuring I needed some real food, I ordered lo mein from one of my favorite Chinese places and left about 20 minutes later to go pick it up. While getting ready to order, I was writing down the phone number and felt like I couldn't figure out what the numbers were -- I was having to stare at each number for a LONG time (several seconds) before it registered what number it was and what I needed to write down. Then when I was driving, I completely forgot where I was going -- as in, couldn't remember why I was out, what I was supposed to be doing. Shortly after I remembered that I was going to get food, I lost track of where I was and where the restaurant was. I had just passed through an intersection and was thinking that the restaurant was on the corner of the next cross-street. When it wasn't there, I felt like I didn't know what to do -- rather than realizing that I was one street off and it was at the next light, I just felt like I had no idea where it could be (magical disappearing Chinese take-out!). After I got my food and got home (in one piece, yay), I got a text from Emilie asking how I was feeling. It didn't even occur to me until I was describing all of this to her that I had had a migraine rather than just a regular headache. After about half an hour of texting back and forth, I suddenly realized that maybe it wasn't a great thing that the migraine had happened right after the vision loss... duh, right? So I texted Em again, my sweet wonderful neuro-genius BFF, and was all "wait, should I be worried about this?" After a fairly long conversation involving multiple people, the eventual answer was "yes." Em offered to go with me to the ER and I said no, knowing that she had an early meeting this morning. I hung up the phone... and broke the fuck down. Texted her and said that, jk, I did actually need/want her to come. (People let me tell you 'bout my beeeest friiiieeeeend... seriously.)
To the ER we went. This officially broke my longest no-ER streak since all of this drama started at the end of 2010. It had been five freaking months without hospitals, doctors, IVs, and all that other fun stuff. Needless to say, I was really, really, really not happy to be heading there, but was also sufficiently freaked out about whatever was going on. I checked in around 10, got taken back quickly, answered 492018423 questions, and then waited. The verdict? This wasn't anything to be worried about. They did bloodwork, loaded me up with fluids and anti-nausea meds, and did some basic neuro tests (following a finger with my eye, watching my gait, etc.), and ultimately decided that this was just an exceptionally bad migraine that totally coincidentally followed a random occurrence of the visual disturbance. I'm definitely glad we got it checked out, but it is hella frustrating to spend that much time in an ER just to be told that it's no big deal... we finally got out of there at 3am.
Bitching aside, the folks at the University Hospital were, as always, fantastic. I ended up having the rock awesome nurse who I had had during my first ever ER visit a year and a half ago, a doctor who I had had another time as well who wears bright purple glasses (and last time I saw her she had blue hair), and other people who were just goofy and reassuring and lovely. The best moment, hands down, was the nurse who came in to remove my IV when they were discharging me and was asking some questions about follow-up appointments and such. She apparently hadn't read my chart, so she asked for some clarification of my history... as I went through the chaos of the last year and a half, she sat there looking stunned and then exclaimed, "Holy shitballs!" Best medical history response ever.
So ya know, I'm freaking fine. Exhausted today, still a bit headachey and shaky-feeling, but ultimately fine. Having Emilie sit there with me last night made all the difference, as I'm sure I would have been an anxious, teary, tired, frustrated mess if I had been by myself. In general, brain surgery and it's after-effects just kind of suck.
My six month MRI is at the end of July and the anxiety about that has kicked in full force over the past couple weeks -- my initial freakout reaction last night was definitely influenced by that, as I'm officially starting to panic about this next scan. As far as I know, if this next scan is clear, I'm done with neuro-related things forever... no more regular scans, no more check-ups, no more anything. The rate of recurrence for my type of tumor is exceptionally low (both due to the type of tumor as well as the fact that the tumor itself was fully encapsulated by the cyst and both were fully removed = there were no tumor cells left in my brain), so the assumption is that if this one is clear, there's no reason to believe that it won't stay clear forever.
That's awesome, right? But there is, of course, always that thought about it not being clear... either this time, or down the road, after I'm technically "done." Six months was the absolute soonest that my neurosurgeon recommended doing the follow-up scan.... usually he said he'd go for more like 9-12 months after surgery. Unfortunately, health insurance blows and I'm on a COBRA plan of my mom's insurance which I need to be off of as soon as possible. So alas, we're doing the soonest acceptable follow-up MRI and just going from there. Sucks, but so it goes.
I have my one year cardiology follow-up appointment on July 19th, and then this six month MRI and appointment with my neurosurgeon on July 23rd. Expect updates and think happy thoughts, kids!
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