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)
you are an amazing lady, keep up the good thoughts and you'll make it
I was in a car accident recently. My brain hasn't been what its been. So I've been getting fed all manner of medications that do as much damage as good to my day to day functionality. So I empathize, and hope you get better soon.
that sux ass. but who are we kidding tumors are a bunch of bitches. I hope your neurologists give em one hell of a Rick James back hand.
What did the five fingers say to tumor?
SLAP!!!!!!! BITCH!!!!!!
Best wishes on getting better Sarah. I look forward to the time when you (and all of us) can put this all behind you.
Sarah,
I am so sorry to hear about all that you are still going through. I can't imagine the frustration of getting mixed information & wanting to be back to your old self. I will be keeping you in my thoughts & hoping that this gets taken care of soon! I want you to feel better. Get well soon Sarah!!
P.S. I may be the same height I was in middle school, but to be able to wear the same size? That's amazing! You should feel good about that!! :)
Sarah,
Your tumor sounds at lot more interesting that mine. I just have plain old prostate cancer.
I may be getting zapped with radiation starting this week.
Take care and heal quickly.
Go Sarah!
We LOVE you Sarah. It's all going to be ok soon. And you're still the wittiest left-hander I know. xoxoxo
You're in my thought and in my prayers! You hang in there!
Rupert
Los Angeles, CA
any chance your ex husband has this too?
Sarah you stay strong and you will be fine. Don't concern yourself with this blog becoming "boo hoo". You worry about getting healthy. People come to this blog cause they care about you, laughing is an added bonus.
Take some time and do something new. Maybe something you have always wanted to do. It will renew you love of life and take your mind off of the healing process. This world is a better because you are in it.
Believe it or not, things will never go back to how they were. Stuff like this changes us, fortunatly you get to decide how. Remaining the same is just not an option...
Take care of yourself!!
Jeff
Thinking very good thoughts for you. Good luck with the chemo therapy.
Hmmm brain invaded by evil parasite. Parasite turns host into a public figure for it's own evil intentions? Sounds like the beginning of a great science fiction read. Now which super power does the host retain from the parasite when it's defeated?
Sarah
I am so glad you posted this follow up. I have been thinking of you since the news first broke and continue to keep you in my thoughts.
Sarah,
The positive attitude will do wonders for your recovery. I know you are going to come through it stronger than ever.
Keeping you in my prayers,
Kevin
Hey Sarah,
Hang in there -- we all know you're tougher than any little brain bugs. I guess I (finally!) get to be a Cool Kid, if having brain surgery gains membership. My issue fortunately wasn't a tumor, or bugs -- it was a cyst just above my pituitary gland (a Rathke's Cleft cyst to be precies). While it was only a cyst, it was causing me to go blind, so I was motivated to get it fixed...
I had brain surgery (the not so invasive kind -- depending on how you look at it) where an ENT cuts, lifts up the nose, works a space back to the skull, removes a tiny piece & then hands off to a neurosurgeon. It really wasn't all THAT bad, except for the removal of the Foley cathetar... :)
And then the fun part was that I got to be the 1 in a million person who had to have the exact same surgery again, 2 years later! Same doctors, same hospital, la, la la... Second time around, we followed up w/radiation (look up 'stereotactic' -- actually very :TNG looking equipment).
Anyway, keep laughing -- if nothing else it confuses everyone. Hopefully, you'll avoid surgery, but I'm sure you'll have a non-stop opportunity to laugh at things. Oh and did they tell you the prednisone will make you eat like a horse? Enjoy it -- after all, doctor's orders! :)
-c
I'm sure you already know this, but Lorazepam has a strong amnesic effect. When I took it, I'd have memory lapses and would often look back on events wondering if they really happened or not. So, if you start feeling that way it might just be the meds and not your brain!! My thoughts are with you for a quick recovery.
Sarah, your too awesome for this. You'll get through it fine, awesomeness is the best medicine for anything! Hope things get better for you.
Hey Sarah I can definitley relate with you I've been dealing with seizures since I was in my teens. I am also left handed which I think left handed people ROCK! Take care of yourself and I hope this all works out in the end for you.
P.S. You may want to brace yourself for those blood tests as you be getting them often for med level checks. It sucks but you get use to it.
You're all so great, thanks for the continued support. I especially appreciate those of you who've come forward with your own stories about seizures, or brain issues, etc. It makes me feel a lot less alone. I mean, try googling "i have neurocysticercosis" sometime. Nothing! Just a bunch of BS medical sites with the same info over and over. I want to know the PEOPLE. Maybe that's what makes me a bleeding heart social networker.
macway- you asked about Brendan, no way to know really without him either having symptoms or getting a bunch of tests. He's aware of my situation and very supportive.
Petite Syrah!
So much going on in that head of yours! We love you and are pulling for you. Want to come over for dinner this week?
xo
Kathy
Laughter is definitely the best medicine. I hope for a speedy and complete recovery for you!
Wittiness still intact! Hope the next stages go smoothly and quickly for you.
I hope all of the meds work (and work quickly) and that they won't have to operate.
Stay strong, Sarah. *Hugs*
So this isn't a Wrath of Khan remake? Maybe you could like watch a Steven Segal marathon or something and they would just leave?
Sounds like you're getting top notch care, not that I'm really up on the levels of care in cases like yours. But it sounds impressive. Maybe if you did wear one of those little masks, and beat on anybody sneezing into their elbow (which is directly towards the person beside you for those of you not sure where your elbow and the other person's nostrils are), then at least you would feel better - impaired immune system or no. I know I would.
Hang in there shorty. Let the magic do it's stuff. Thoughts and prayers.
Hi Sarah,
Know that there is one more person out there keeping you in their thoughts. Even if you might not feel everyday like yourself know that all the things that endeared you to us through the years are still alive and well. I watched TWiF and read this post and while it would be awesome if the circumstances were different and I hope that you will have a full recovery and they soon will be in both cases I think there was plenty of the witty Sarah shining through brightly. Also as someone who still loves the medium of the written word even in the world of video, and tweets, I really admire your writing style in this post.
Take care, thanks for sharing. All the best, Justin
Wow - I go away for a while and look what happens to you.
I think I may have said this once before, maybe, not sure, but think back to the toughest time in your life, the absolute worst, and think back now, you got through it.
You'll get through this, I am certain, it's tough and it sucks, but you'll be ok - trust me, I am a muse.
http://www.youtube.com/watch?v=u6FwEJwwYcQ
You are a tough piece of goods Sarah Lane - you are fearsomely and mightily made...
Denver
Sarah - I'm really sorry to hear about all of this; best of luck & please keep us posted on the progress.
On the bright side, perhaps it would help to keep in mind that we're fortunate enough to live in a time when there are some actual options for treatment - I'm sure just 50 years ago there's not a lot that could be done. That doesn't make bad news any better, but I suppose it provides some perspective... for whatever that's worth.
Best, -Ryan
Well, the upside is now you have *definitive* answers... experts saying "I dunno" is always scary (this is what my teachers say when I say "I dunno" to their IT questions...but then again, I don't get paid a 6 figure salary and have to wake up every morning and have make the tough decision to take the SLR or the Drophead to work today).
While I obviously don't *know* you, from what you choose to show about yourself publicly, you seem like a tough cookie... I'm certain you're gonna get through this stronger and more awesome in the end. I'm sure everyone (myself included) is sending positivity your way!
Sarah,
Have listened to you for a long time on many of the Twit programs - and my 10 year old son falls asleep ( sometimes inappropriately) to TWIF. Sending you all the best and good thoughts. Your honesty and humor through this are appreciated and applauded. hang tough, I know you will pull through. Keep going
Awesome post, get well soon Sarah!
Thankyou for still doing TWiF, I don't know what I would do without it!
Hello My dear internet friend Sarah,
I was glad to hear that your slew of doctors came to a consensus as to what was the causitive effect of the seizure. Now you can start treating it and get back to being you; do not worry you'll always be the wittiest person I know. Sending you good vibes from tx.
you friend
-francisco
Wow Sarah, your like a House episode I recently watched. Take care and yes let the kitties be the therapy of choice. Listen to your doctors and follow all the rules.
Thinking of you.
Cindy Sal
Hi Sarah,
I first met you when you made some crazy video of your metro ride from home to work one morning, and have been intrigued ever since, When I first read about your illness I was saddened at first, but then again impressed and amazed by how you are handling it all and sharing your journey with us all who care about you.
I want to say that you are not alone with this. I hope that you can feel the caring of all the people you touch through your words and actions, and that somehow it makes this adventure you are on just a little bit better for you.
I am with you, everyone is by your side. Stay strong and stay happy!! You are a true inspiration!
Hi Sarah,
Thanks for telling us about your experiences. I find yours interesting because having had experiences somwhat similar, its hard to find a way to voice your emotions. And because you are typically surrounded by are young people who don't have them, it is difficult to voice your conflicted emotions. The response is always "Think positive...blah blah blah" and that is always coming from people who have not faced the possibility of a life on medication(with side effects), of limits long before you ever thought you would have to think about them. One day, your life is your drinking buddies, career and finding a mate, the next is endless doctors appointments, blood draws, non-definitive answers and treatments that initially feel worse than the disease. So thanks for writing your experiences in a candid, non sugar coated and honest way because I think sometimes, that is the best way to heal. Accepting the worst possibility means that the current situation really isn't so bad. But you have to "think negative" to get there.
I've had my share of health problems and I know just how hard it is to stay positive. That you're still joking through all this is just amazing. Take some good drugs and cook them bugs. Lousy freakin' brain bugs.
Reading Elisha's comment made me reconsider mine. "Staying positive" is an oversimplification. Maybe I should rephrase it as refusing to give in to despair. Trust me, you let despair overtake you and there's no bottom to it, it makes being sick 1000 times worse. So much depends on your attitude. If you refuse to give in to despair and manage to squeeze whatever fun you can out of life during this, the experience will be a lot less awful and you'll probably also recover faster.
Hi Sarah- Just wanted to add my well wishes to all the rest. I fell for you way back when you were still hosting, I want to say Screen Savers, is that the one? Anyways, no matter what show it was, your attitude, and your savvy were always great to watch. Oh, and your grade A cuteness was a big draw as well. I hope you kick this neversillysackasynthalcockneysis, or was it neurocysticercosis, whichever, kick it right in the cajones! Take care and no hand feeding the homeless! Talk at ya later.
Hi Sarah, sorry to hear about your neurocysticercosis. Get well soon. It's good the doctors now know what it is.
Just reading about neurocysticercosis on wikipedia, I don't like piggies any more...
You have so many followers I don't even know if you will ever read this. Anyway...
You have been stuck in my mind for the last several days. Well, ever since I heard about the seizure you experienced. Life sometimes hits us with some strange stuff. It's really how you decide to take it. You know the old saying "If life gives you lemons, make lemonade". I just wanted to let you know without being weird, you are super cool! Thank G_d for that. I'm sure you will get past this. You have bigger fish to fry. Your fans don't want you to miss a This Week in Fun show. I don't! Sorry for being selfish.
Yours truly,
Ricky G.
P.S.
I can't spell.
I am currently wearing one of those masks and so is Dane. I have the pig flu and he doesn't.
YET. MWAHAHAHAHAHA!
What? Anyway, I'm glad you know what it is now and the parasitic part is only a *little* creepy so...good news. Hooray!
Please continue to take care of yourself...bacon flu hugs from Portland,
Kiala
Also we call Lorazepam "razzies" her in the Hesselbee household.
And Klonopin is "Lollypins".
We are children.
We love you and are thinking about you every day. If anyone can get through this, you can.
Your Canadian Fans.
Piece of cake, toots! You'll win this fight, guaranteed!
Dude, drugs and a face mask? That sounds like some sort of rave party. ;)
You're always in our thoughts. The force is strong with you young padawan (seriously). We'll be laughing at all of this soon enough. xoxo
Hang in there Sarah. Your fans are sending you tons of positive engery.
Get better soon, we are pulling for you.
Jim
Hang in there girl. You are going to be OK. You are in good hands and are doing the everything that you can. This too shall pass. Believe it!
Sounds like a real drag you are going through. This is unexpected coming from such a light like yourself. Let's hope things back to normal real soon! A mind is a terrible thing to waste!...Sorry. ; }
I'm thinking good thoughts for you! I want to see more post, more enlightening, if sometimes fruit-centric, videos coming out of your inventive brain.
Your neurologist would have been more aware of neurocysticercosis had she been a faithful viewer of House, MD. It seems to come up at least once per season on that show. Heh.
Your welcome for the best medicine money can buy, and I know you will be back to 100% very soon. I can recall when you first went on air.
You have an opportunity to voice a very loud and convincing opinion on this controversial subject. Although I was joking above with the thank you, would you rather have your current health care or universal health care?
At least you are in control of your own health care today. You have the option to see any doctor you want. You will probably incur tremendous medical bills during this treatment but you are in control.
With universal health care all your treatment will be determined by a statistical algorithm based on your income, age, and life expectancy. Yes it may cost you less, but when your life is on the line who do you want in control of your treatment.
Your going to come through this and have a good long life.
The good news: When this is all cured you will be 6 inches taller!