Sarah, the Goddess of Brain Tumors (part 2)

Well. A lot has happened since I wrote that long, rambling, sort of embarrassingly dramatic post about having a grand mal seizure. I probably wouldn’t have bothered with a follow up - because quite frankly, I’m so sick of talking about brains, how brains work, how brains fail us, why brains suck and are ugly, etc, that the next neurologist I meet at a dinner party I’m going to glare at the entire time, just because – but I knew I had to bite the bullet because 1) a lot of you really, truly care about me and my health and have told me so, and because I value your support I feel that I owe this to you, and 2)  I’m on so much medication that I’m basically a drug addict at this point and if I don’t write it all down YESTERDAY, I’ll probably forget that the entire incident and ensuing medical bullshit details ever happened. Which could actually be awesome, I’m not sure why I’m not doing that.

So remember that epilepsy medication called Dilantin that I was prescribed to keep future seizures away? And how I said that the list of side effects was side-splittingly funny? Well, one of them is a potentially life-threatening allergic reaction which I developed within several days, because I’m just cool like that. Me and Padma Lakshmi! At my first appointment with my new SF-based neurologist, she took one look at me and “we need to take you off Dilantin. We need to take you off Dilantin NOW. This is not good.” Shitty first visit to a new doctor, but I appreciated her honesty and concern.

So now I’m on another anti-seizure medication called Keppra, which is like swallowing 1500 mg of rainbows every day compared to Dilantin. I don’t feel 100%, I still forget easy words and have walked into several walls, but for the most part it’s very tolerable. I’m suppressing normal brain functionality though, and that makes me uncomfortable because anyone who knows me at all knows that I consider myself the wittiest person currently walking the Earth, and would rather die than be thought of as dim or unfunny. Maybe slightly less vain.

Since my initial seizure and treatment at Marina Del Ray Hospital, I’ve had 2 more MRIs and a bunch of yummy blood tests, but the diagnosis has kinda changed a few times. I originally had neurocysticercosis, then after a better MRI scan they thought it looked like ganglioglioma, a slow-growing tumor that isn’t necessarily malignant, but will continue to give me seizure problems until removed. (THROUGH BRAIN SURGERY, BTW. I mean, the only thing cooler than me having brain surgery would be me becoming a rocket scientist.) Anyway, after a third MRI there appeared to be some more swelling/scar tissue around the area, which is bad, and two additional, smaller tumors, which is also bad. The good is that now it really looks like neurocysticercosis and I no longer have several brain specialists with 4500 medical degrees from the world’s most prestigious institutions giving me conflicting information. It’s the parasite! Excellent, so we all agree! SO PUMPED!

Tomorrow I’m starting a course of anti-parasitic medication designed to shrink/collapse/kill/stabthroughheartwithstake my neurocysticercosis tumors. (You are taking a shot of Jameson every time I say that word, right?) It’s called Albendazole and it’s kind of like a radiation treatment, killing the bad stuff but killing everything else too and ravaging my immune system. I’ll need to be very careful about being anywhere I’m susceptible to infections or diseases. Like H1N1, for example. You know, that flu that kills people. And might be living in the public restroom where I work.

I’m considering wearing one of those little germ masks, just to be an asshole.

Here’s sort of a weird twist to this genius plan: I also need to take a side-effect happy steroid called Prednisone to minimize the additional swelling in my brain that will arise from taking Albendazole, the very drug that is supposed to kill my unwanted brain colonies. Apparently parasites will rage against the machine when attacked, and with enough disruption I might have another seizure. The other day when my neurologist was explaining all of this to me and kept needing to refer to various notes and diagrams and I was sort of crying because, I don’t know, SHOULDN’T SHE HAVE BEEN BORN WITH THIS KNOWLEDGE AND NOT HAVE TO LOOK THINGS UP, she sighed and said “I’m sorry Sarah, but understand, this case of yours, it’s very unusual. I mean, I’ve got a Pacific Heights practice and all, I don’t see stuff like this very often,” and we both had to laugh. It’s true, she works in a richie-rich neighborhood and regularly treats patients who didn’t sleep under a bunch of filthy camel blankets in the Thar desert in 2007 by choice. I like to think she’s secretly thrilled that Sarah Lane, world-weary street urchin, came along and gave her something to believe in.

I also met with a neurosurgeon, just to cover my bases and stuff… and the consensus is that opening up my skull should not be our first plan of attack, because – and you’ll really love this- since the tumors are in my right temporal lobe and I’m left-handed, I actually store more important data in that area than a right-handed person would… you know, like THE ENGLISH LANGUAGE and HOW TO TALK… so operating in that area is all the more risky. Left-handers really deserve Halliburton’s money for our troubles or something.

So, that’s where I am in my little journey. You literally know everything I know. And I definitely don’t want this blog to turn into this boo hoo place where I can only talk about what’s wrong with me, so don’t be too put off if you’ve come here looking for tech tips or pictures of me in my 7th grade cheerleading uniform. Once this passes, we’ll all go back to being ourselves and I’ll be wittier than ever and you will LAUGH AND LAUGH AND LAUGH AT/WITH ME.

Please think good thoughts over the next couple of weeks as I add some hardcore drug interactions to my already impressive juggling act. I hope this stuff takes. I want this to be over so, so badly, and despite the cool factor I don’t actually want brain surgery. I just want to be me again and to be happy to be part of this wonderful life. And to bathe in Lorazepam regularly….It’s like impossible to get pissed about anything on that stuff. Amazing.

I had a grand mal seizure. Want to hear?

So. I had booked what sounded like a pretty neat job… I didn’t know much more about it than that I’d be participating in an “expert panel” for MSN in the tech/gadget arena in Palos Verdes on October 12/13th, and my birthday actually fell on that first day, so I thought, well, huh, I’ve agreed to be working that day anyway, so why not fly down to LA for the previous weekend and see all my friends?

The MSN folks had arranged a car service for me, so as I descended down into baggage claim from a pleasant, wifi-enabled 1.4 hour flight, I saw a jovial older British guy with the ponytail holding my “LANE” sign (obviously at that time I had no idea he was British or jovial, but now it’s stuck in my memory). Anyway, nice guy. Led me to a Lincoln Towncar and didn’t blink an eye when I asked to be driven into Venice instead of straight to the hotel in Palos Verdes (where I’d been put up for the weekend by MSN). See, I just wanted to have brunch in Venice first. That’s all I wanted to do! Couple hours tops, two days before actual work. Slight chance of shopping. Slight!

So Venice resident Damon Berger (the future person to save my life, though I didn’t know that last part yet) and I walked two blocks from his brand-new kickass little bachelory beach bungalow to Abbot Kinney Blvd, the hipstery granola beautiful people main drag. We took our time choosing a place (which was nothing new, because we’re both picky about our food/service/sun exposure in our own ways) and settled on an organic/German/everything brunch spot called 3 Square.

We sat outside along the edge of the East/West wall at a 2-person table, just out of direct sun. Now here’s where everything gets fuzzy, because I remember certain things I said over the next five or so minutes, some of which were actually heard and have been backed up on official record, and some refuted for total inaccuracy/whimsy/fake language not recognized by any linguistics expert, anywhere. I remember asking to add mushrooms to an otherwise mushroom-free omelette, and was later told that I commented on how good bircher muesli was (it was an item on the menu). I remember the former but not the latter. Basically this is right around the time where things were falling apart upstairs. Keep in mind it was 11:30 am.. nobody was partying.

At this point, the really truly last thing I do remember is Damon looking across the table at me in a very concerned way and asking me if I was ok. “Sarah, are you ok? Seriously, are you ok?” And I heard him, and I saw him, and I couldn’t answer him. I could NOT stop whatever was coming. And that’s when I blacked out.

I’ve been told that at this point my entire body began convulsing, my eyes rolled back into my head, my mouth bled from where I had bit into it, and my lips turned blue. I guess that means I wasn’t breathing… blue lips? It wasn’t cold outside. Damon grabbed me and had someone pull my chair out from under me, brought me to the ground, and yelled for someone to call an ambulance. Apparently it arrived within about five minutes… good thing we weren’t dining in South Central. Damon would later tell me that he was convinced I was having either a heart attack or a stroke and dying right then and there, in his arms, and that it was the scariest moment of his entire life. I’m terribly grateful not to remember this part.

What I do remember is waking up in the back of an ambulance, an EMT to my left, Damon to my right. Now, this sounds really crazy and stupid but my initial thought was that I was being kidnapped, because when I begged to be let go they tried to hold me down and soothe me and keep in mind that I had no idea what had happened at the restaurant. I was in the back of a van and a strange man wanted to put a needle in my arm. I believe I kicked him. (EMT guy, I’m sorry I acted so badly with you, I know you were just trying to help. Keep on keepin on.)

I was admitted to Marina Del Ray Hospital, a place that I never knew existed, even though I lived less than ten miles away for two years. Kind of a small-town, kitchy feel to the place, and I say that with no disrespect- the kind of hospital where you don’t feel lost in the sterile shuffle of modern medicine. I was completely doped up for my 2.5-day stay, so forgive my swiss cheese memory, but I do know that the first IV drip I got was phenobarbital, the MOST WONDERFUL DRUG IN THE UNIVERSE, and also the #1 anti-seizure medication prescribed to dogs. Yay trivia! This is a little embarrassing to admit, but after four hours of intervenous intergalactic planetary space flight, I spent the rest of my hospital stay trying to come up with reasons why the nurses should give me more phenobarbital. (They never did, because they are mean, cruel nurses and only out for themselves.)

First test I got was a cat scan, which was a piece of cake… sort of like a mini-MRI. I think the next one was my actual MRI (which I was particularly sedated for, since I had heard it was a really claustrophobic experience… totally fell asleep in there). The third test was an EEG, which was a series of wires and suction cups attached to my scalp. I’ve never looked uglier…fact. There may or may not be a few iPhone pictures to back me up, but just take my word for it. 

Anyway, so yeah. 400 tests, strong drugs, really nice nurses, and some not-that-horrible hospital food. Besides the circumstances under which I was there, I really think it could have been worse. My hospital roommate was Mrs. Jimenez, who had literally had BRAIN SURGERY several times already. A lovely woman with a great family, and I hope she gets better.

I’m now on a drug called Phenytoin (brand name Dilantin), which I take three times a day and has one of the worst list of side effects I’ve ever read. You guys, it’s almost funny it’s so bad. This is anti-epilepsy medication, which nobody really thinks I have, but is my best overall seizure suppressant until I get a clear diagnosis and better treatment options with a local neurologist here in San Francisco. I hate it and I hate the way it makes me feel. I feel slow… not funny, not smart. I am not legally allowed to drive a car. Plus, I’m not supposed to drink alcohol, which is ONLY THE ELIXIR OF LIFE, NOTHING BIG.

They think I might have cysticercosis, likely contracted during my year traveling abroad. It’s pretty gross. I’ve actually tested negative for it already, but they also think I have something called a blood-brain barrier, which might cause me to test inaccurately in tests such as these. BECAUSE I NEED AS MUCH OF A CHALLENGE AS POSSIBLE WHEN IT COMES TO MY BRAIN.

So that’s where I am now. I have my first neurology appointment here in SF on Tuesday, and we’ll go from there. Think positive! I also just wanted to thank everyone who’s called me or written me or bought me beautiful flowers (McCloskey), sent various notes of support and encouragement, etc. I hope I can get back to all of you, but just know I’m reading everything and really appreciating the love. 

A quick but heartfelt congratulatory note to my cousin Martin and his beautiful bride Rebeca, who are getting married in Boston on Saturday in a gorgeous, joyful ceremony that I’m devastated to have to miss. A match made in heaven if there ever was one!