Sarah, the Goddess of Brain Tumors (part 2)
November 1, 2009Well. 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.
Reader Comments (120)
I am a big fan of your work Sarah. Get well soon. Sorry to hear about all your medical problems. From all these posts you have a lot of people that are thinking of you and wishing you well.
Sarah,
I have been away tending to my Wife as she died (16Jun2009 - complications from a rare GI disorder) and dealing with life without my Dream Girl. I am sorry to hear that you have been set upon by whatever this is and will be praying for your recovery.
I would like to suggest that you get yourself to whomever the doctor is who can speak of your condition without looking at notes; the docs who see folks like you daily. These docs are usually found at university/teaching hospitals. For my late Wife, that meant going from CT to Philly where a world authority on her disorder practices/researches at Temple University Medical Center. We would go there every 4-6 months until 2 years ago, when it became too difficult for her to travel that distance. Locally, we moved her care from our local hospital to Hartford, where (surprise! surprise!) we found a former fellow who had studied under the World authority and who stays in regular contact.
As you appreciate, you are playing for your brain. In my world view, it is best to play with the very best people you can find to help you.
All the best,
3Case
Hey Sarah, I just listened to TWIF and didn't even know about all this until I listened. I am nobody in particular but I just wanted to wish you all the best and tell you that listening to your shows, and reading articles really makes my day. Everybody appreciates all the work you do and will be right beside you (well as much as we can be) through all this.
B.
woo interesting you are on Preds righteous shit - as i was on 40mg a day for a while I definatly get the "I can run thorugh walls" feeling.
Theres also the "mmm dougnets effect" on your apitite
so here's what went thru my head as i finished reading this:
"oh man that so sucks the most ass, i hope you get better... hmmm cheerleader picture...wonder if its hawt... haaawt!"
anyway pls get better soon
a
Always thinking good thoughts for you, Sarah. Thank you for sharing yourself with all of us!
=^..^=
Sarah, I know you'll get better. It's as simple as that! ^___^
You're such a beautiful person! (I hope I haven't come off as creepy.) XD
Sarah, fight the good fight girl. We're all behind ya and hoping for a speedy recovery. The drugged up thing is fun to watch, but I'm sure you'd rather be yourself.
Hugs and get better.
Jesus, Sarah. Thinking good thoughts at ya. And keep on doing TWIF!
Sarah, it was really not funny to hear such bad news about you. It was the first time I was even listening to This Week in Fun - recomended by Mr. Leo Laport in one of his shows. So, I decided to give it a try, and I don't regret it. But to hear your history and to know how honest you can be with all the people who follow you and like you, I really started liking you too. I really wish you get better. I'm brazilian and I have to tell you that neurocysticercosis is SO commom down here... It's a bad thing, but my wife's aunt just had it and she is really, really good nowadays. So, Rock on Sarah!
PS.: Sorry if my message had any mistakes in english. Since I'm a brazilian guy, i might not be able to put into words what I really wish of good to you.
Peace and love, you don't know me but I've followed you for a long time. You were a favorite of mine when you weren't famous. I'll be glad when you have overcome this and are out slaying bigger dragons
Sarah, I just want to tell you that you have one of the sexiest voices I've ever heard. Also, you are correct -Lorazepam = a good time. I'll be fighting my health prob's right along with you. :)
Hi Sarah, I just want to say that, even though I don't know you other than your public stuff, I love you as a human being (not in a stalker sort of way :-) and I really do thing that you are awesome...
Sorry for the typo in the last post which should have said "THINK that you are awesome" and you really are just that :-)
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Thanks a lot for upgrading us on your situation. My abilities of a good reputation and fortune are all completely instructed at you, I wish more than anything that you'll get through this soon and have a complete restoration.