2010: A New Hope.

I meant for the following post to be written before 2009 ended, but since I’m still asking myself what year it is and walking in circles, I figure I’m still within an acceptable time period to participate in the whole year-end blog nonsense. And I’m way past due to write something here anyway, partly because I haven’t since November when I basically said life was peachy and let’s ride off into the sunset, and partly because formspring.me is dumb.

You know what else is dumb? 2009. What a shit year, amirite? Ok, that’s not completely true, but I wouldn’t put it at the top of my list (1990, for example? Great year. Top 5. I went to the Washington Monument!)

For a brief but dreadful part of 2009, I was afraid I was going to die, and although I’ve experienced the process of death from very close range in the past, I’ve never felt as though my own time could be up any second. That was a pretty heavy time period for me psychologically, and I spent too much of it being overly anxious about relapsing, popping lorazepam at the encouragement of my neurologist only to become dependent on it to sleep through the night, and feeling disappointed by a few people I cared about that didn’t (in my eyes anyway) end up being very supportive. Let’s just say I felt lost and alone at times, blah blah.

Then my brain got better and I was really really happy and full of a renewed lust for life, which led me to do some impulsive things, like fly to Paris for eight days without enough seizure medication to last me because I was in some sort of you-can’t-kill-me-I’m-unkillable mania and forgot to refill my prescription, which forced my mother to have to visit my neurologist’s office, pick up my drugs, and smuggle a few days’ worth via FedEx (in order for it not to be seized at French customs, she listed the contents as “plastic toy” and you can imagine the looks I got at the FedEx office in Paris when I picked it up. Whatever, France, all your fashion models are topless, lighten up). Paris was maybe the BEST WEEK EVER.

Thanks, Mom. You were already the best mom to ever walk the great Earth, but now you’re the best mom who throws French laws about transporting prescription medication to the wind so that her daughter can ride on the back of strangers’ scooters and dance on Parisian tables without worrying about ending up in the hospital unconscious and convulsing. Badass.

If anyone from the French government is reading this, I’m totally kidding.

But by getting “better” my life hasn’t exactly returned to how it was before, which has been a difficult transition for me into this new year. Even though I’ve come to tolerate my medication pretty well and it’s become part of my routine, it still makes me feel slow and dizzy and I find that I’m pretty much useless unless I take it right before bed and sleep off the worst of it. I also still can’t drive. I expect to be able to sooner than later, but the DMV paperwork to get your license back in situations like mine is ridiculous. Also, I own a Saab, which just makes the whole thing funnier.

Oh, and the infectious disease specialist that I said I was going to see in my previous post? A real pro, loved her. What she told me - and I think if anyone knows this, it’s her - is that if for any reason I stop taking my seizure meds, that due to the residue in my brain, the likelihood that I’ll suffer another seizure hovers around 50%.

50%? Those are not good odds. I have to take this medication for the rest of my life? Huge bummer. But it’s worth it if it means I’m cool and can soon manhandle the Saab through the streets of San Francisco like the champ that I am. Still coming to terms with that.

All of it aside, I’ve stumbled into this new year a changed woman, at least on the inside. Trite but true. I’m really interested to see how things play out where I can flex this newfound love for everything because I welcome it all, including a free trip to Japan that I earned over 10 years of miles accumulated on shit flights on United (winky face, United!!). And get out your barf bags, but once again I need to thank you all for your undying (really) support throughout all of this. Never have I felt more loved, and I mean that.

A highly condensed version of things I wrote to myself to strive for in twenty-ten:

1. Get back into a regular excercise routine, shell of a woman. YOU NEED MUSCLE.
2. Let it roll off your back (that’s how I’m saying ‘don’t sweat the small stuff’ in 2010, shut up it’s totally better)
3. Live your life forward, not backward
4. Love and be loved
5. Go on a date with Jennifer Aniston (where the f was she in 09?)

That’s pretty much it. Happy New Year, universe. Happy to be here, happy to know you all.

Also? I detoxed off lorazepam on my own and no longer take it to calm myself down or fall asleep. Stay in 2009 where you belong, shithead. I DON’T NEED YOU ANYMORE!

Sarah Lane's Tumor Ruin: All Signs Point to No

I got some good news today. Really great news. The kind of exceptional news where afterward your only real choice is to throw some Daft Punk on Pandora, put the headphones in, and just start skipping down the street, smiling at everyone. (I actually did that, btw. If you saw a small, maniacal, skipping woman wearing super cute green/pink Pumas on Fillmore today between Clay and Page, that was me, dawg! And I was smiling at YOU.)

I had my 5th MRI yesterday, the one that was supposed to tell me if my parasitic nightmare and ensuing slightly embarrassing overshare (um, sorry, btw, wow) was all worth it, and if the neurocysticercosis had filed for bankruptcy and foreclosed my house.

And guess what? I met with my new neurologist today, and we went over yesterday’s scans in detail, and…. it looks like my tumors bought in the height of the market, and they thought they were really scoring, and then the bottom dropped out of their neighborhood, rendering them yet another statistic in this national recession of fallen property values.

But seriously, between the radiologist’s and neurologist’s notes, I was told there was “progressive reduction”.. indicating that not only had my tumors already diminished, but that they are expected to continue to.

O, happy, blessed day. Seriously. You don’t get that kind of news every day. I don’t, anyway.

The next step is to meet with a highly specialized infectious disease doctor (I guess they have those and these people spend their entire lives researching people like me, which is rad) and make sure that she doesn’t think I need another round of Albendazole/Prednisone, just to make sure the killers are really truly dead. I guess my particular disease is one that’s still being figured out and the treatment options modified regularly.

Basically I got the best news I could possibly get at this point. If the parasite in my brain that manifested into the tumors that gave me an epilepsy is truly dead or soon to be dead, then if I’m lucky (and I don’t need to be all that lucky since the odds are 80% in my favor), the resulting brain scar tissue from this whole ordeal will stay in my brain, but cease to cause me further issue.

Obviously the whole thing will be closely monitored. For example, I still get the headaches I started getting before my seizure, and that always worries me a little. My neurologist thinks it’s likely residual pain from all that radiation I went through. If anything in that department gets weird, I’ll get looked at. But at this point, I’m considered “on the mend”.

I can’t believe it, and yet I can… because as insignificant and brief my ordeal has been in the grand scheme of human suffering, I consider the entire experience a gift to a vain, materialistic, silly woman like me who really needed a little perspective. It worked, UNIVERSE! GOT IT! I love life and I love being here. It’s all very obvious to me now, and if it’s always been obvious to you, then I’m so happy to belatedly be in the club.

Jill Bolte Taylor & me: we're like THIS

Sup Internet! Sarah’s brain here. Feeling shitty after a loooong bout with anti-parasite medication and steroids. What up y’all?

Just kidding, it’s not really my brain talking, it’s just me (my brain doesn’t get talking rights anymore, stupid thing doesn’t even work). I don’t want to make this sound too dramatic, but Prednisone? Horrible steroid, makes people go completely insane. I know this because I’m one of those people. For example: I had a tantrum, directed at my own mother, in the street. A street with a lot of people walking around and noticing. A tantrum. You think to yourself, “oh haha, she’s just calling it a tantrum but that only happens with babies and toddlers”…. I. HAD. A. TANTRUM. I actually had several if we’re keeping track. I was only on the Prednisone to combat the Albendazole I was taking in an attempt to kill my parasitic tumors, so… you know. It just felt unfair overall.

Today was my last day on Prednisone (I had to spend five days tapering off because apparently just stopping cold turkey would make me devour a birdhouse and then cry about it and then maybe punch an elderly person), and I couldn’t be happier. I hope I never have to take that drug again. It gave me equal parts mania, despair, confusion, hunger, nausea, and a lot of tears. The kind of situation where you can tell yourself that it’s the drugs, it’s not you, but the thoughts in your head are still there and cannot quite be ignored. Scary. A lot of friends and strangers have come forward with their own Prednisone stories… people take it for asthma, lupus, all sorts of things. Sounds like some people tolerate it pretty well, and others don’t.

Real quick for anyone wondering, I have yet another MRI on Monday morning to see how things look upstairs after this whole radiation/steroid treatment, and if my tumors are 1) smaller, 2) unchanged, or 3) worse. I’ll let you know either way. I think I said a few weeks ago that I didn’t want my blog to become a wasteland of medical details, but hey. At least I’ve got something meaningful to write about. And it makes me feel better to share all of this with all of you, so I’ll keep at it, and you can stay along for the ride as long as you like, until you start vomiting (and you will eventually, I assure you).

I did something sort of weird today, and against my better judgement I’m going to share it with you. If it seems narcissistic or crazy or otherwise just really bizarre and unnecessary, could you do me a favor and just chalk it up to me being a narcissistic, crazy, bizarre, and unnecessary person who is on way too much medication and may not be thinking completely lucidly? Thanks in advance.

So. I watched a particular TED talk at the insistence of a dear friend who knew I would get a lot out of it. He kept insisting that I watch, hammering it home, annoying me about it even, because he knows me and knows that people are always sending me links to “world’s most amazing video” and often times I just don’t get to it. You know how that goes. You say you’ll watch “world’s most amazing video”, but you end up not ever getting around to it, and it doesn’t matter because there’s this other video you did watch involving a cat who eats with chopsticks and SOMETIMES WE JUST HAVE TO CHOOSE WHAT TO DO WITH OUR TIME, AMIRITE?

This is the video I watched: a speech by a crazy smart brain scientist named Jill Bolte Taylor who had a very unique experience that is not at all the same experience that I had, but that still spoke to me in ways that would never have been possible before I had a seizure and realized how fragile our brains (and our lives) actually are.

So, this friend I told you about? The one who knows me well enough to know that maybe I wouldn’t watch this amazing video because I might get caught up in, I don’t know, registering for Gowalla or some stupid shit like that (no offense to Gowalla, really, but I did actually register for that today)? I wanted to prove to him that I did indeed watch the dumb video he sent, and because we’re Internet nerds who do things like save chat logs to prove each other wrong and take screen shots of websites that have errors and laugh and feel superior and such, I decided to record myself watching the video to send to him later so he’d have proof that I really did watch.

Here is that video. The first couple minutes are cut off, but maybe you’re really creative or stoned and want to try to match up the video above with my reaction video? If neither, don’t worry, I captured the audio which I think captures the essence of what I’m trying to convey.

I was very moved by this woman, this stranger, this person who I could have never heard of or seen or known existed and been totally fine. Totally fine meaning possibly dying of a brain tumor, but you get my drift. But I think it’s worth it, and as I’ve had a lot of downtime lately and been experimenting more with video and life and the organicness (is that a word?) of it all, I just feel like I’m ok sharing my actual experience with you, here, now.

Not ok? Narcissistic/crazy/bizarre/unnecessary? Well then forgive me Father, for I am drugged. It has been 33 years since my last confession.

Getting proper healthcare is utterly baffling. It really is.

In my already exhaustively exhaustive (I’m exhausted) play-by-play of my brain activity within the past four weeks, there is one part of the story I’ve neglected to mention. I know this doesn’t seem possible, because I have mentioned every detail that could ever be applied to any story, anywhere, and I also added links. But this particular detail might apply to you more than the rest, or just interest you, because by golly it involves HEALTHCARE and INSURANCE, two of our favorite things!

When I had an allergic reaction to Dilantin, the anti-seizure med from hell, and was switched by my neurologist to the infinity more pleasant Keppra XR, I still needed my insurance company’s approval to cover the cost as part of my insurance plan (a good one through Current TV, btw). It would have probably taken a day or two to push through, but because of what the neuro considered a very timely situation, she started me on Keppra XR right away. How? The office had a drawerful of samples that some rep from the manufacturer had left for people like me to try out. I took a week’s worth.

But then my insurance company denied me coverage for Keppra XR, apparently because they didn’t feel there was enough research to prove that the XR (“extended release”) version was that much more beneficial.

Here’s the thing about extended release medicine if you’re not familiar… having a drug release the good stuff more slowly and over a longer period of time can really help overall stability and “coverage”… especially when I have barely enough short-term memory to remember to take multiple doses of anything. Or drink water. Or blink.

So the doctor’s office appealed my insurance company’s rejection with what I imagine was a stern doctor’s note about how my condition is unstable complete with medical records and just put the damn thing through we’re already started here kind of stuff.  By this time, I had run out of Keppra XR samples, but my doctor’s office had more in the drawer! Another week’s worth! Crisis averted.

And then my neurologist’s appeal got denied. I was basically freeloading off the drug manufacturer because my doctor gave me free samples of a drug that worked well for me and my insurance company basically told us all to eff off. Now, mind you- this does not mean I wouldn’t have been able to BUY Keppra XR myself, I mean, I have a prescription, but it’s hundreds of dollars per month.

The doctor’s office announced the tragic news to me but nobody over there seemed all that upset or worried (there were still more samples in the drawer, and my doctor was going to call someone over at the ins. company directly). But, you know, these processes always take forever. There are archaic practices still in use, like FAXING and HAND-WRITTEN PRESCRIPTION NOTES THAT USE ROMAN NUMERALS, NOT EVEN KIDDING. I just felt very bounced around in a loophole. And Keppra XR is not like some fun, “woohoo I scored” kind of drug that people really want, by the way. Its highlights include confusion and walking into walls, and not having seizures in the street.

Then I got a call from some very nice gal at my insurance company (is it weird not to say the name of the company, btw? This is post is not meant to drag anyone through the mud), who informed me that although my Keppra XR coverage had been denied, and then its appeal denied, that I still had the option to file MY VERY OWN PERSONAL APPEAL! Because I’d probably come up with a more harrowing jungle story about escaping a wild pack of porkworms than my neurologist did? Because I even know a single ingredient inside a Keppra XR? Not sure. But I filed an appeal anyway. This is roughly how it went: “I can do that? Even after …. ok, yes, yes I would. Consider me appealing. Do I need to tell you any… alright then you have a good day as well. Thank you?”

Four days later I got approved. I got approved for refills through 2099, to be exact. I’m not paying for Keppra XR for another 90 years, mothereffers! Can anyone even play that much mah jong? Both my doctor’s office and my insurance company called me to tell me the good news within the last hour. Virtual high fives!

Do you see how many insane ways this story is insane, though? I mean, WHAT. IS. GOING. ON. behind the scenes back there? Are these companies so large/mismanaged/confused that I, Sarah Lane, have 11th hour 2nd appeal powers above my own medical team? This whole dumb saga turned out well for me, but I don’t actually know how. I do know that many of you who’ve left me emails/comments/tweets/nice thoughts are no strangers to the this world of approvals and denials, but I certainly am, and am just baffled.

Also? I start tapering off my Prednisone tomorrow so let’s all hope Sarah the Hulk tapers off too. I tore up an entire mahogany dining set while writing this blog post.

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 7^th 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.