This girl is awesome

http://www.everywhereist.com/2012/06/
Check out another very clever woman facing up to her BT, Steve.

oh boy....

So remember those tumor moments? Well, I do. How do I remember? Well the thing is I think they are becoming more frequent. Or maybe, as some are pushing me to believe, I am just more in tune to them. Either way, shit is happening all up and down my world. I am like one walking tumor moment, head to toe.

Let's start with sleeping, no big deal right? Wrong. I originally heard the tinnitus in my ears while in bed. I even tried to convince myself that it was some kind of a noise coming from my bedroom since I only ever heard it when I laid down in there. Well, it is still there and now it is accompanied by the occasional dizzy spell. How a person has dizzy spells while laying down, I have no idea. It's like I am in a perpetual drunken state with the spins... So, while I was sleeping, fighting myself for the covers, I SLAMMED my head into my bedside table. Boy, what a tumor moment!

I routinely walk into walls while coming down narrow hallways. TUMOR MOMENT! Walking in a straight line? That is a thing of the past. Today I even walked to school with my shoes on the wrong feet...tumor moment? I don't know if being generally confused about getting dressed was one of the symptoms, but I am going to roll with it.

I could sit here all day and list the moments that take my breath away, not because they are romantic and heartening, but because they are just so damn shocking, I can't believe it is my life. I would list them all, but there are too many. They've begun to blur together. They don't mean as much one by one and in aggregate they are proof of my need for a new normal. I am watching my body slowly revolt against me. I tell my eyes where to look but they betray me. I tell my feet where to go, but they betray me. I tell my pain to abate, but it betrays me. My mind, my body, they don't belong to me anymore. I am bearing witness to the deterioration of a strong body. I have to hold on to walk down the stairs. I have to be mindful of what I drink and eat because the nausea is always right below the surface. I have to be mindful of things that never should have to matter. Generally it is scary, but I laugh about it, even when there is no one looking, even when it is just me, laughing alone. The lonely clown.

So what else is going on? Well, generally I am a cranky bitch. Yup. I've pretty much lost my motivation. It is that time of the semester that things begin to wane anyway but for me, instead of late nights working through the desire to give up, I am just giving up. Not outwardly. I go to class. I read just enough to keep up but I've lost my honest motivation to engage the material. I was the person who read, looked up everything in the readings, then re-read. Now, we're lucky if I read at all. If I skim. I'm too tired. From what? I have no idea. I sleep when I don't have answers to avoid attacking the people around me who are trying to love me. I draw lines around myself, around my heart. It's too little too late, I think to myself. Where were you when I had nothing wrong with me? Why could you not emote then? Why is it that we leap to each other's aide in emergency? Is this even an emergency? Is it even trouble? It's fine, right? I'm fine. I think I'm fine.

I think I am fine and then I get up and fall backwards in my chair. People chuckle as a utter my new motto, "ACT CASUAL!" I don't feel that casual. My body is slowly disintegrating under me. I have abandoned my healthy diet and thinking, propelling myself forward with candy and sweets, thinking, on the off chance I die, I may as well enjoy what I have while I am here. It's really just pathetic. I know I'm not dying. But I don't have the strength to fight my body, my heart, my mind and worry about appeasing the people around me. I don't have the answers. I don't know why I am mad. I just am.

Though I am walking around harboring anger I do have fun most days. I am laughing my way through this process and honestly most days the laughter reaches my heart. It absorbs into me. It lifts me up. Makes me recognize my luck, my life and my never ending ability to just act casual.

I think I know why I am so all over the place... why? Oh you want to know? Ok then. Surgery is set. I go in December 20th to get mah brain chopped open. NBD. I got this. But I didn't realize having the date set would make it IMPOSSIBLE to think of anything else. I didn't realize that now my minutes are consumed with thinking of what it will feel like, what it will be like and how I will heal. It's just official now. Logistically, I'll finish my finals, hopefully well, and then I will send them off into the ethos. I'll head to Arizona shortly thereafter, preparing for 2 days of pre surgery poking and prodding, which will hopefully normalize this process so that my heart doesn't stop the day of surgery. I've already asked Jason to make sure no one kills me on accident and he has promised to kick their asses if they try, so we've got all of our bases pretty much covered.

I dunno, I think I need to work out more but I did so many jumping lunges I can barely feel my legs. Whoops. So I sleep. Tired or not, to avoid being alone with these incessant thoughts. It's not at all restful. It's actually quite the waste of productive time. But I have always done well with time pressure. So, logically, if I spend all day sleeping, and wake up just before things are due, I have set up ideal working circumstances. This is just really smart. I am just really smart.

I don't really know what to say. This is just a stream of consciousness post. There is not really any kind of moment of uplift or substantial lesson. Just a recognition that this is real. It's official. It's happening. And there is nothing to be said about it, it is what it is. In the meantime I will take advantage of what my brother tells me is the "Street Cred" that comes with having a brain tumor. I'm legit. Don't mess with me. I got street cred.

Peace and Love always - Samira

Updates - all things Herbert, Samira and life in general

I hadn't realized how overwhelming my trip to Arizona had been until I came back and began to process it. The reality of a diagnoses and what that means to an individual are hard things to understand. The reality of being differently abled than what you are accustomed to is scary, even if the consequences of a diagnoses are minimized by the notion that it could be worse.

I went to Arizona with my Dad and Jason on Thursday to learn more about the famous Dr. Spetzler of the Barrow Neurological Center. Having heard so much about him I had anticipated the experience to unfold in a certain way. I had a vision of him in my mind, an expectation set up. I am not sure if the expectation was met but I do know that he will be my brain surgeon. You know when you hope if you say something enough times it will stop being scary? It doesn't work. I have tried to wrap my head around the notion of brain surgeon and brain surgery so many times. I've tried to normalize it. It's not easy. It doesn't ever feel normal to say, "Hey you! Yea you, guy in the weird blue surgical bonnet... Come over here! Talk to me for a minute or two so I can decide if I trust you enough to let you cross all of my personal boundaries, cut open my skull and muck around in my brain! Nice white coat by the way!" And before you can even finish the sentence they are out the door. On to the next set of scans. Dehumanized masses waiting for cures, for treatments, for salvation. With 29 doctors operating out of the Barrow Center, the waiting room was just that. Huddled masses, the sick, obviously trying to conceal their nervousness or on the other side of the spectrum they sat, so adapted to "sickness" that their presence in a doctor's waiting room was commonplace. Their supporters, helping with paper work, standing at attention when their names were called, holding hands, patting backs, helping their poor, sick counterparts navigate this system. It was all too much. The wheelchairs, the canes, the eye patches, the facial lags. How is this my life? How is this where I am? I mean, I just have headaches, there is just ringing in my ears. This place with these sick people, I can't possibly belong here. Right? Or do I have to come to terms with the fact that I am only okay with notions of disability because I am able? What will happen if and when I am not? So step one was the waiting room and getting through that, especially since we were 2 hours early with no where to go, and it felt like a marathon.

Meeting with the doctor was strange, brief and somewhat mechanized. I had to meet the man I was going to allow to cut my head open. I couldn't go into this without some insight into his humanity, his way of knowing, I had to use my intuition to know what was right. His fellow came in first, and with a somewhat patronizing tone discussed my symptoms with me. I gave him my ever growing list of symptoms. Instead of seeing me as a woman in tune with my body he dismissed even the most relevant symptoms as potentially caused by anything. To cause me to feel stupid and a bit infuriated that my hearing loss and vestibular disfunction, though potentially caused by anything, were not really being attributed to the GIANT TUMOR growing on those nerves. While I recognize the desire of medical professionals not to want to make promises, the notion that the symptoms that led me to discover Herbert could be anything and that they can't tell me what surgery would do for them was just downright exhausting. And upsetting. I know I am not a doctor, but I am also not an idiot and I know my body. I know it well. I listen to it. Despite the condescending nature of the fellow, he seemed smart and probably quite capable. Dr. Spetzler was different. Very even keel, very confident. When asked if he was the best at what he does he mumbled a quiet yes. Yes. He is the best. Why would I walk away from that? His affect was good. He was decisive, he was clear. He didn't seem in the least concerned. Though, when he identified what is already signs of facial weakness and I jumped up exasperated to look in the mirror on the wall, he couldn't help but crack a smile. Oddly, the doctor mockingly laughing at my exasperation at potential facial weakness made me feel good. I was pissed when I saw what he saw though.

There are some adjustments to my overall expectations. I had hoped that the best guy in the world would say, "Hey Samira, seeing how awesome you are, we have an awesome result for you. We will take Herbert and massacre him, but don't worry we will save your face and your hearing. You will be tumor free and go on to live your life on the path you always imagined. Go on! Return to your previous life devoted to the plight of others. No more of this confusion about what it all means! We will fix it!" But, um, he didn't say that. He did give me hope to keep my hearing on my right side for longer than any other doctor had, and without the risk of radiating my brain. How you ask? Well he wants to leave Herbert in there. At least partially. He wants to take out the really scary parts of Herbert, what I am assuming is his fat ass, and leave the rest. This involves leaving the part on my hearing nerves and also involves the potential for the continuing presence of my symptoms. BUT, I will get to hear and smile and maybe Herbert will realize that once he gets his ass removed he won't want to grow it back. It's like free lipo. Who wouldn't want that? I can tell you right now, Herbert is a shallow son of a bitch. That being said, I was glad to FINALLY have a doctor talk to me about hearing preservation. Dr. Spetzler was the only one to say that, even the doctors here that advocate debulking (aka ass-ectomy - the removal of a tumor ass) had told me to give up on hearing. Which was generally a bummer. Dr. Spetzler was different. He knew more. He seemed to have such a solid grasp and his fellow spit out some very promising statistics. With that in mind, I am hopeful about surgery but am also staying realistic. I am tempering my expectations with outcomes across populations. I am treating this whole thing like a science project. One that I am seeking to win a blue ribbon with.

So life goes on as normal. I am almost fully nocturnal now, I am perpetually naseous, so Zofran is my new BFF. I am contemplating a tattoo (to the dismay and confusion of my parents) that is another attempt to regain control of MY life, MY body, and MY identity as a woman living with a diagnoses. Given that surgery won't eradicate my tumor, I have to live with Herbert for longer than I had hoped in some form or another. I have to be patient with him, my little uninvited guest. So I work, I workout and I try to maintain a baseline level of normal. I've done an okay job at it too. I think.... I hope, anyway.

I am also contemplating taking this blog public. While I originally started it to inform my loved ones, through joining the Acoustic Neuroma Associations support group and talking with other patients I have learned so much about myself, my diagnoses and how to cope. So maybe I can pay it forward with my story, in all of its gritty detail. Just a thought.

Peace and Love

Samira

Finding out you've been living with Herbert all along...

About three weeks ago I got some upsetting news. Well, actually I discovered some upsetting news with the help of Apple's facetime technology, a sister who is a pediatric geneticist genius, and an MRI film...

Let's step back a few years, a little bit less than a decade.

I was sitting in Mr. Cronin's french class and I felt a blinding pain on the right side of my head. I could barely keep my eyes open, I left class, went to the bathroom, splashed water on my face and powered through the pain. I didn't think too much of it until the next day, sitting in Mr. Cronin's french class it happened again. I thought to myself, this class must somehow be offensive to my subconscious because my body is reacting to it in quite a negative way. But then I thought, no, this class is great, I love speaking French. La tour eiffel! Steak frites! le cafe! Then it started happening in other classes, so finally we went to the doctor, they ordered an MRI and I remember walking up and down the crowded halls of my high school expecting the worst. A brain tumor... The MRI showed, well it showed...it showed, NOTHING. No tumor. Thank goodness! Oh but wait, my head still hurts! "Do you see halos in front of your eyes?" the doctors asked. "No," I replied. "Does the light bother you?" they asked. "No more than the light bothers anyone else," I replied. "Are you nauseous?" they responded? "No, my head hurts!" I emphatically replied. Well, given that I had no clear signs of migraines, I was diagnosed with migraines and went on a five year course of torturous treatment. Harumph. Slowly I began to naturally adapt to the pain. I made life changes, decreased my stress, learned to meditate. I became an advocate for my health and decided I didn't want to be on pills for the rest of my life and weened myself off of the hordes of drugs I had been recklessly given.

Fast forward 8 years of no depth perception, clumsy jokes, and intermittent head aches and I wake up dizzy one morning. Oh crap I think, it is the dawn of my second year of PhD school and I have jitters. Such bad jitters that my world is spinning. It'll go away once I get to class. Oh wait, nope, no it won't. It's just dehydration, it will go away with a solid nap and a large glass of high quality H20. Wait a second, nope. So to the doctor I went. I am pretty sure the loved ones around me thought my inner hypochondriac had kicked in, but in my heart I knew something was wrong.

The doctor did a hearing test - I couldn't help but think it was a waste of time. I have great hearing I thought, minus that incessant swooshing sound I have had in my ear for the last 8 or 9 months... the doctors had said it was water in my ear, or wax build up or an ear infection that was lingering. That is so not connected to this. The tester said her words and with my back to her I repeated them with absolute confidence... Her: "catch" Me: "caT" but not just any "caT," cat with such enthusiasm that I lingered on the T, making sure the tester knew that I knew that she knew I had no hearing problems. Her: "bath" Me: "baT" Her: "Blorp" Me: "Blorp?" Her: "Let's try that one again she says, blorgn Me: "Blorgn!" I got it that time for sure!

Wait a tick, I am pretty sure blorp and blorgn are not words, what a weirdo this tester is...wait, am I not hearing this correctly?

Turns out I had a bit of hearing loss. Nothing crazy, just enough to make locating noise difficult. They put me on steroids, if this is some kind of infection, they assured me the steroids would do the trick. But, just in case let's get me scheduled for that MRI. Don't panic, I thought, how important are the structures of the inner ear? I hear of Yogi's getting their inner ears all messed up all the time from prolonged hand stands. That must me what happened to me. I am a certified Yoga Sculpt teacher. Except, I don't know how to do a handstand! "Shut up, inner logic!" I screamed at myself.

MRI day finally comes and it's actually quite fun. My parents come visit, we go out to lunch and we even go shopping. A small part of me thinks we should do this more often. Well, maybe not all of it, maybe just the lunch and shopping bits.

So there I am, on facetime with my sister, the doctor, and I am PANICKING! "What the heck is that?" I scream. Calmly she says, "those are your eyeballs." How does she know that I don't have two eyeball shaped tumors sticking out of the front of my skull? I am not sure but she sounds confident. I decide to move on. "WHAT IS THAT? That cannot be normal!" She laughs, "that is your spinal cord!" I wonder if it is supposed to look like Darth Vader but again the timber of her tone has not changed so I decide to trust her. I also trust her that human ears are supposed to look awfully elfen in MRIs and that everyone has blood vessels. I even believe her that my brainstem is supposed to look like broccoli. Then I see it, a white mass. Looks like a golf ball, maybe attached to a smaller mishapen golf ball. Uh oh.

"WHAT IS THAT? THAT IS NOT NORMAL! EVEN I AM NOT THAT STUPID TO THINK THAT THIS IS WHAT MY BRAIN SHOULD LOOK LIKE. COME ON WHAT IS IT?!?!?!?!"

"Calm down," my sister says,"but the smile is gone from her lips, I can tell just from her voice.

"WHAT IS IT?! GET IT THE F*** OUT OF MY HEAD!"

"We just want both sides to look the same," her calm is not easing my rising anxiety,"all we know is that there is an irregularity, but there is no reason to be worried. Do I look worried she asked?"

I don't think she looked worried but really all I can see at this point is Darth Vader, invading my brain with his little irregularity, ugh how rude!

I don't want this in my head, in fact I am screaming that. I don't want it in my head. Come on, get it out! My sister assures me that if "Lance Armstrong's balls can handle this, so can your brain."

Dammit. I wish it was in my balls. And, no, I have no balls, I am fully female, so an invisible tumor in my invisible balls would be much preferable. JEEZ!

Long story short, I have a tumor, which I have coined Herbert. I figure even uninvited guests deserve names. Herbert being the ugliest name I could think of. (Sorry if that is your Grandpa's name!) I mean, we have been hanging out for at least a decade. Wait, you are confused too! How did I know that Herbert has been with me so long? Well, remember that lovely MRI from years ago? Yea the migraines. Turns out Herbert was hiding in there all along and was "plainly visible" according to the doctor who looked at it recently. He was just a little tike then, 4 mm. He's grown, he saw a vacant lot on my vestibular and facial nerves and decided to move in. (We're not sure if it is a tumor of the vesitibular and hearing nerve or the facial nerve but it is most likely what is called an acoustic neuroma or vestibular schwannoma - no, that is not the same as chicken scwarma - I asked...) He recently even expanded to the lot adjacent to my brainstem. I hope it appraises well because location is everything in this market.

What I have is not cancer (YAY! sorry cancer, I just don't want you!) and it won't kill me (I mean no more than any other thing I face on a daily basis is likely to) but I have to deal with it. And, I have to deal with the anger that comes with it. I have to face potential loss of hearing (eh? what did you say? heh?) perhaps the potential of facial paralysis. Ugh there go both my Broadway career and my modelling career. Whatever, you are too short to be a model. Not me.

I suppose I am lucky, and some days I feel like I am. I am continuously grateful for my family, my friends and my handsome boyfriend. Then there are the days where my sense of humor fades and I etch the word laugh onto my hand. A reluctant reminder that my strength is from the inside. I think I have dealt with worse loss than this in my life and I strive every day to find my new normal. Some days I am frustrated. I slip in a balance pose in yoga or feel faint lifting weights. I think to myself, I can do this! Some days I feel betrayed by my body. Other days I feel betrayed by my heart for feeling betrayed by my body. Some days I think, what a waste all of this healthy eating has been and I think about donuts. Some days I think I have a sweet excuse to slack on my homework, then I remember who I am. I am not the guy that makes excuses. I am the fierce woman who fights back. I've begun to reframe expectations for my year and my life in new ways. As my sister said, I should mourn the expectations I had that I would wake up with 2 working ears. A reasonable expectation by all accounts and one that I should try to live without. That seems doable.

The great news is that this is treatable, and most likely successfully. So I tell jokes. I try not to get bogged down in the disheartening reality that I cannot control everything. I try not to be mad (but really I am) and I try not to misdirect my anger at any of you (sorry if I fail). My family has seen me in the worst of my moments and they let me scream and yell. Sometimes they respond with the reluctant non-commital, "Well..." Well what? am I right or am I right? Apparently not even Herbert can get people to affirm your views all the time. Other times they get more passionately angry than I, carrying the torch on my behalf. Wishing this hardship on themselves, something I would NEVER allow. And sometimes, they tell me to shut up, that no one will feel sorry for me because I will be ok; and, it is in those moments, right as I am about to call them a bunch of meanies, they squeeze my hand, pat me on the shoulder, or blink their tears away. It is then I feel like I don't even remember my old, uninvited guest, Herbert. Sometimes they even laugh at my hugely inappropriate jokes long enough to let the pity out of their eyes and true joy in.

This is my journey. Well, our journey, Herbert and I. And don't you dare call him Herby, that is way too cute. This is also the journey of a woman who sought to change the world of women who have been victimized in the worst ways by humanity. I still plan on doing that. I still plan on carrying the torch of women around the world who are voiceless as I know all of you, my beloved friends and family are carrying the torch for me, being my cheerleaders. Even when I can't hear your cheers.

Follow my blog for all things Herbert, Samira and life. From the trials of getting a PhD and trying to hold tight to my cause for women and the world, and the small inconvenience of a looming brain surgery. I invite you to walk along side me. Just don't walk on my right side because Herbert won't be able to see past you.

Peace and love --