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)
Sarah–you're awesome and an inspiration to a lot of young women who want to work in social media. Thank god you and your bad jokes are gonna be around for a while. Phiew! Montreal is rooting for you and your new friend!
I just wish I could give you a hug....
*virtualsquish*
I'm sorry to hear that you have to fight this, but I'm glad you are fighting it so well. I hope you are able to overcome it quickly.
Here's to future laughter, good thoughts, cheerleading uniforms, and the Sarah we all know and love!!!
I will keep you in my thoughts, I hope you get well soon and everything turns out ok.
Sarah, we love you. We hope the best for you, so be strong and take care. YOU WILL GET OVER THIS, YOU CAN!. We will continue to follow you and will give you the space you need in case you need it.
Hey Sarah, I know that this whole thing has been very hard for you. I can't even imagine how I would react if I was in your shoes but I have to say, you are handling it so well. Even though your pain comes through in your words so does your humor and your intestinal fortitude. Good thoughts to you and stay strong.
Really, really sorry to hear about all this. I feel horrible for you, and wouldn't wish anything like this on anyone. I'm really thinking positive for you.
Stay strong, Sarah.
Ima pray to Ja for you tonight!
I think working with Martin this closely is deteriorating your brain :D i jk i jk
Wow what a journey. Might I suggest you might think of putting together your blogs of this experience together for an article or a book? Your personal writing on what your going through is very touching . I wish you only the best and a quick recovery. You always succeed in entertaining me and making me laugh.
Your pal,
Chris
PS wow Melancholy Train just like life. I remember riding those trains or bart so silently...
Hey Sarah! While it stinks that all this is going on, I'm happy that your docs seem to be coming to some sort of a consensus. I'm sure I'm not alone in saying that I'm very appreciative that you're still doing your thing here, on Twitter, on TWiF, and on Current Tech too. I hope everything works out well for you!
Stay strong Miss Sarah Lane! We are all here thinking good thoughts and sending healing vibes your way. Thanks for keeping us updated.
It is great news that you have finally determined the proper diagnosis and treatment. I wish you the best in combating this ailment, Sarah. And you are the wittiest person in media!
"You know, that flu that kills people. And might be living in the public restroom where I work."
I had no idea that you worked in a public restroom. When you set up the webcam for the show, do you use the institutional green of the walls for green-screen effects and put in a different background? How do you keep the sound of the people coming in, the flushing of the toilets, the water running and those infernal air hand dryers from bleeding into the microphone? If you lock the door, what do you do to keep people from pounding on the door?
Enquiring minds and all --
-- Sean (@ohdotoh)
Dude, you're such an inspiration! It's awesome that you have such a good sense of humor about your situation.
Parasites? In MY brain?
It's more likely than you think...
Sarah, from myself - my family and the crew at my site, we all wish you the best and are grateful that you decided to share everything with all of your fans. We are just "the little people" to some degree, scattered across the planet and doing our own thing but throughout the years, and through your many projects, we have all followed you and grown to care for you as one of our (virtual) own.
I think I can safely say that all of your fans will be praying in some form or fashion (to whichever deity they follow) every single day for your well being, and your speedy recovery back to as normal as is medically possible.
We are all grateful that Sarah Lane still shares this spec of dust in the cosmos with the rest of us!
Think Positive, Take Care and Be Well Miss Lane =) "Now go kick some parasite Ass"
Sarah, my sister in law had a brain tumor for many, many years. She had occasional seizures/blackouts but lived with it for many years. She went through all the various treatments to try to keep it in check, but eventually it started growing larger. She finally had to have the brain surgery. She came through it remarkably well and recovered from the few after effects. She lives in Oakland and works in San Fran. I'd be more than happy to hook you up with her if you'd like to talk to someone who's been through a very similar circumstance and I know she'd be more than happy to share it with you. It might be nice to have someone to talk to who's been through it and had a positive experience. Contact me on Twitter if you're interested, otherwise, I'm sending you positive vibes and hoping the best for you. Jeff
You've led a much more interesting life than most people I know (I mean me) and I thank you for sharing it with us (again, I mean me). I really hope that you'll be around for a long time so that people (again... me) can live vicariously through you. Thank you and good luck.
Sarah-I read this book after hearing the author on the radio, I Had Brain Surgery, What's Your Excuse?, by Suzy Becker (http://www.amazon.com/Brain-Surgery-Whats-Your-Excuse/dp/0761139796/ref=sr_1_1?ie=UTF8&s=books&qid=1257129524&sr=1-1).
Suzy also express fears of losing her humor, but as you can tell by the title of her book alone , she did not.
Take Care,
Joseph
Thanks for the update, Sarah. It sounds like you have a pretty rough few months in store for you. Please know you have many cheerleaders out here rooting for you. I loved every minute of following you around the world on your journey. This is just not the way that story is meant to end.
Thanks for the update, Sarah. All the best!
Wishing you well and a speedy recovery. And just a FYI, the only time I ever laughed AT you was to laugh at those animated .gifs back in the ZDTV day. Your expressions are hilarious...on an infinite loop. (laughing right now thinking about them) That was some funny sh*t!
I wish you the best. I've basically been following you since "who's that girl on the TV?"
I know you're going through a lot, so I wanted to comfort you with this one constant: no matter what you discuss on your podcast, no matter how personal or interesting the topic is, some jerk will type "ZZZ" in the live chat.
Glad they've gotten themselves straightened out on what's wrong and what to do now! Hope you're feeling better soon!
You'll be fine.
Thinking positive thoughts for you Sarah. It's good to see you still have your sense of humor in such trying times. I know you will be back to your witty and spectacular self in no time.
Sarah,
Laugh, laugh, laugh, laugh, laugh. If there's anyway to deal with heavy stuff like this, it's laughter. Especially when you're scared spitless. Or anything-else-less. It really is a sign of personal strength, in my not-so-humble opinion.
I just gotta say, though -- you make brain tumors look GOOOOOOOD!!!
-T.C.
This time is a challenge. It seems you are handling it awesome and will continue doing so. Keep the Faith and we all hope you get better.
We Love you Sarah. You'll be in my thoughts and prayers.
Take care.
xoxo
Stay strong, Sarah. You're a fighter and you'll beat this. Get well soon!
Stay strong Sarah!!
We'll keep thinking happy thoughts for you! Take care and don't be afraid to lean on people (in the figurative and literal sense :) ) if you need to. Those of us who only know you online can't help much, but I'm sure we'd all do whatever we can to support you.
Just so you know, those weird face masks are so hot right now in China. You can be all avant-garde and protect yourself. I see people in SF sporting them all the time (even though I think they are a little weird). Thanks for the update Sarah...and I have to tell you, I don't feel a difference at all when I read your blog. You are funny, witty, and so real--it's inspiring. Plus, you have better grammar than I do, and honestly, there isn't anything wrong with my brain that I know of. I know you are going to be fine and I am happy that you are closer to a solution. Stay strong, you are in my prayers.
The world would never be the same without you. The world will never let it happen.
I <3 you Sarah Lane. Your attitude, sassy posts and ability to keep your head on straight through all of this is inspiring. You've got a lot of people rooting for you, keep it up!
My cousin went through the same thing. In the end everything ended up OK but it was quite the journey
PS. If you wear the germ mask draw a big smiley face on it
Oh Sarah, you make me laugh and cry at the same time and no one on the internet has ever made me to that.
Dear Sarah,
We want you to know that we are praying for you daily. My husband and I have loved to watch you on The Screensavers and have followed your career to date with TWIF. You are a beautiful young lady that will beat this for sure no doubt!
Please keep us all informed on how you are doing..remember we are here for you! Please give all of your fur babies big hugs and kisses.
Jo An and Richard in SE MI
PS Thank you and Martin for the light wonderful show. You guys can put a smile on anyones face.
Over the past 8 years, from TechTV to now, you have enchanted many thousands and thousands of people.
All of your fans and admirers are sending get well wishes.
After you are past this and completely 100%, we will all celebrate.
Until then, open yourself to our prayers, wishes, and healing thoughts.
SARAH RULES!
There is a guy on Adam Carolla's show called Bald Brian. He's similar to you, only an inoperable brain tumor. His site is: http://bryanbishop.posterous.com/
His new wife even has a webpage about it and what she's going through. http://aninconvenienttumor.posterous.com/
Check out adams show as he has brian on every week or two and its amazing to hear what he is going through. He announced it earlier in the year before he even started treatment and just hearing the difference from week to week is quite amazing. Might inspire you. Might scare you.
http://www.adamcarolla.com/ACPBlog/category/podcast/
Good luck Sarah, best wishes.
Keep your chin up, kid
You’re a fighter and it is just another fight .Remember that all your friends and fans, are cheering to you. To get well as soon as possible. And they say the hero never dies, and you’re our hero
Good thoughts your way Sarah, take care kiddo....
Thank you so much for updating us on your condition. My powers of goodwill and luck are all fully directed at you, I hope more than anything that you'll get through this soon and have a full recovery. As soppy as it sounds, my life wouldn't be the same without you! Technology and the Internet are a fundamental part of my life, and you are the most fundamental part of my online experience!
And I’ll still love you even if you have to shave your head. But I hope it doesn’t get to that stage!
We love you Sarah we also can't wait for you to be all better. Hopefully it will be soon enough! : )
I only know of you because I'm a tech geek and watched you on Tech TV years ago. I've followed that whole crew over the years on the web. I saw your tweet tonight and your news hit really close to home.
A year ago last July, I was out on my road bike (bicycle), feeling better than I had in probably 30 years. I was at the end of the trail that I ride coasting slowly getting a drink from my water bottle. It was a new bottle and it didn't slip right into the cage on my bike like my old one. A little inattention messing with the bottle and before I could do anything about it my front tire skidded out from under me. I hit the pavement with my helmeted head without bracing for the fall - it happened so fast! I was knocked out. Someone called an ambulance. I had a CT scan at the ER - which didn't show anything abnormal. I was told to expect headaches for a few weeks maybe - and I did have headaches. After a couple of weeks I started to get clumsy. I started to have problems with the right side of my body, numbness in my face, no strength in my grip, i started scuffing my right foot while I walked. Scared the hell out of me.
I went and got another CT Scan which showed I had a bleed: a subdural hematoma - blood clot.
The short story is that I ended up at the U of Iowa Hospitals where they drilled a hole in my skull and removed the subdural hematoma that was putting so much pressure on the left side of my brain.
The great news is after the surgery I'm back to normal (with a soft spot in my skull).
Please take care of yourself. I know how stupid this is going to sound, but you are lucky they caught this. I was extremely lucky they caught mine when they did, as the odds were way against me. I know this is scary for you. Do the things they tell you to (we are so fortunate to live in this county where up to this point we still have the best health care in the world). Don't take chances, make sure someone is watching you or that you can summon someone if you have problems. This is all stuff you already know. I'm sure you will come through this, but it may not be pleasant. I will be thinking of you and you can contact me it you would ever want to.
Hang in there Sarah, everything will be alright. -Dan
This isn't the page with the rest of the cheerleader pics? I'm so lost and confused... ;) Watching a group of developers or engineers sit around a table debating (guessing) what piece of code or mechanism brought down the system can be sort of entertaining at times. Listening to doctors or specialists explaining their hypothesis (guess) about a patient, especially when it is you, not so much... My only advice, not being a doctor and all, is to keep asking the questions and re-asking them if necessary; if they cannot explain it in a way that makes sense, they probably don't understand it themselves.
Best of wishes on an expeditious and complete recovery!
P.S. Thar Desert?
Hope you can work from home as often as possible during this period to avoid the big outside petri-dish world. In the meantime, keep that Purell handy, and God Bless!
No matter how much the medications suck or how scary it sounds, knowing what you are fighting is so much better. Both you and your doctors will know what to expect. With serious conditions, that's more than half the battle.
As Nietzsche said, what does not kill us, makes us stronger. So many things that looked insurmountable in your life before will fall and never look as challenging again. I've found this to be true in so many ways.
Rock on Sarah Lane.
You deserve lots and lots of hugs.
Sarah,
You are STILL witty and bright and not even those (and believe me when I say I'm sorry that it's now plural) tumors can change that!
Your post is VERY interesting and insightful and I wish NONE of it was happening to you because you deserve the very best life has to offer and this ain't that kiddo! ;-)... Read More
You are AWESOME to share so much detail and care enough to be SO forthcoming about all of this to people who you know only online and as one who considers you a "friend", I'm VERY appreciative of the update!
You've been on my mind A LOT since that seizure and I will continue to think my MOST positive and life affirming thoughts and send them your way!
I hope that all goes well with your new course of treatment and you feel as good as possible! You will ALWAYS have my support and friendship as well as that of THOUSANDS of others and we all want you feeling better ASAP! :-)
PS - About that 7th grade cheerleading uniform picture....WOWZERS! ;-)