blurg

I am totally over this brain tumor. TOTALLY. OVER. IT. Nuff said

Head above water

So recently things have just been plain hard. My spirits were relatively low and I had some pretty rough moments. Last week I flew to Poughkeepsie, NY for a conference. Before going there I had come down with a pretty nasty cold and couldn't really feel my face because my sinuses wanted to explode. Between the cold, stress of giving my first ever exam to my own class and being totally unprepared for life, I had a lot of up and down moments. I was emotional and in this stage of reevaluating everything in my life. I would stare off to space and think, I never imagined my life, at this stage to look like this. And it wasn't that I am somehow disappointed. I wasn't and I'm not. Rather I was just confused. How could I know so much and yet so little? How is it that I just can't understand? I was grappling with issues of love and commitment, health and sacrifice, reality and expectations, faith and the world. What did I even believe in anymore? I was and really still am confused.

I kept looking down at my hand where I had previously written the word "laugh" and it has washed away. Outwardly I have done a great job keeping up with the laughing and the smiling and the jokes but the veneer is beginning to fade. I just want my head to stop hurting. My new word is "Fearless" and it is on the necklace I have had around my neck since before I knew all I had to be fearless in the face of. I look down at it often, I hold it between my thumb and forefinger. I hope that I can channel that idea. I've been through much worse than this. I can do this. I know I can. But I am angry a lot and all of the other problems in my life, from minor to major now seem magnified. They somehow seem urgent to me. I have a bucket list to get to while I am still somewhat able. So I console myself with the notion that at least if I am all janky and messed up, looking like Quasimodo later, I can get a service dog to cart my lopsided ass around town. That's a good silver lining right?

I think part of the problem is that I have no control. The things I thought I knew are not universal truths, they are constructions. I don't KNOW anything. And the stuff that hurts most (physically that is) I can't do anything about. I can't get to the other side of my skull and pull Herbert out. He isn't a scab I can pick at or anything I can see but I can sure as hell feel him. I want him gone. I want my life back. I want my truth back. I have to stop sometimes and realize that even the non physical stuff, the life learning things, I really don't control those either... what the heck can I control?

I was sitting on the plane coming home from what was largely a disappointing conference and the stress of being away, not having all my right foods to eat, my painful cold, and sheer exhaustion. I leaned my head back in the chair and tried to close my eyes (I had wanted to read but the plane was enforcing sleep by turning EVERY light off). I finally lulled myself into some semblance of a sleep. I woke suddenly, awaken by my own crying. I felt like I was being attacked, every fiber, ever nerve, every last bit of the right side of my body was in violent pain. This can't be real, I thought. So I just closed my eyes again. Had I not been aware of Herbert and his desire to attack me I would have thought something very serious was happening. A fleeting thought passed through my mind, that maybe I should ground the plane, I didn't know if I could withstand this. But what would they do? No one can fix this. I buried my head in my hands and hoped the ride would end soon. And it did. Soon enough I was recovering and running across a new airport. The Detroit airport, which has a strange underground funhouse hallway with lights and creepy music, that is really not conducive to my condition... I finally begin to feel the pain alleviate and then my flight is called, I climb aboard, leaned back in my chair and there it was. It was back. Dammit! Excruciating doesn't even describe it. My vision was blurred, my hands were trembling, my whole body was tingling. I was definitely afraid. I had to be fearless. I held my head in my hands and realized the positioning of my head impacted the pain. It was like with the increased pressure of being sick and being on a plane, the position of my head either really pissed Herbert off or made it so he could climb into his freshly cleaned sheets and take a nap, and get off my back for a while. So I stayed, hunched forward in my chair, the closest to fetal position you can get on a plane, and waited it out. It was like I was staring Herbert in the face and saying, "You give up, because I won't! Stand down! Stand down!" Eventually, he did. I win this one, asshole.

I have had to give in to my utter mediocrity. I am not able to do what I was before, not because I can't physically, but because navigating these emotional places takes a lot of time. It is exhausting. It is frustrating and it manifests itself in EVERYTHING. Even my bad hair days are a time of emotional devastation. Take for example this:

I mean who wouldn't sink into a deep depression. I look in the mirror and I see this:

and it took so much combing and teasing to get to something as simple as this:

So what does my BAD HAIR DAY (or BAD HAIR YEAR 2012) have to do with my emotional state? Well, when the best you can do is just keep your head above water and your legs are tired from treading so long, and your head aches and your arms can't splash anymore, every last thing counts. Every last moment matters. Every little challenge seems so big and yet so small and so you struggle to say, why can I not even handle this? This hairdo? Why does it matter? It shouldn't, but it does. It's that last little bit of weight that tries to drag you down and you can't let it. So you look to your friends, as John Mayer says "Then the circle of your friends Will defend the silver lining." And they do, whether it is Jason telling me endless jokes, making me smile all day long and proving his love in the funniest of ways, or my best friends text messages or funny ims, or little surprises on my doorstep. You see that silver lining and it pushes you back up. It's like life's flotation device. And it helps you keep your head above water. Way, way above water.

Tomorrow I go to AZ to meet with Dr. Spetzler. I am pretty excited and am hopeful he can fit me in for surgery during the holidays. Friday I will go back to Dr. Elliot to hear from the results of his gamma conference and see what the consensus of doctors said about my case, I have been putting this appointment off for a while. Then it will be serious decision time.

I hum this to myself sometimes to remind me that despite it all, we are here to share joy with each other and that is what I will do for you, if you keep helping me see how. "Pain throws your heart to the ground Love turns the whole thing around No, it won't all go the way it should But I know the heart of life is good." Thanks John Mayer, despite your weird racist rant and your strange public love life, your words give me comfort.

Peace and love - Samira

Doing anything but this, the diary of a diseased woman

I have a ton of work to be doing. I mean, a ton. Like if it was not inside this computer it would probably weigh 2000 pounds. See, literally, a ton. And as I started writing this last night I was not doing any of it. I wasn't even doing this, I had stopped blogging 2 sentences in. I don't smell a Pulitzer anytime in my future... I wanted to be doing anything but focusing. If it was anything other than sitting in my melancholy, I wasn't interested. Adding insult to injury there was nothing on TV. Since when did network television turn into 3 hour blocks of the same inane competition show? Why can we not put together quality programming anymore? What about story lines and character arcs? Give me someone to be invested in for longer than a 2 month competition in which nameless faces are replaced with more nameless faces. Dammit Monday night, you are a TV nightmare. I had already worked out, there was nothing on TV, reading, working or being productive were all out of the question so I had to find another way to waste time.

So I sat, with my thoughts, and sang to myself. Ever since I was a kid I have liked singing. Whenever I am sad music makes me feel better. It makes me hopeful or even in the way it magnifies my emotions it helps me heal. Since Herbert reared his big ugly head I have had a tough relationship with music, it's been on again off again. Having so many emotions bubbling so close to the surface music just brought it out. How can I stifle reality if random singers on the radio seem to be speaking directly to me? How can I avoid the progression of what I have to deal with when the melodies are pushing me forward? It had become problematic but in my infinite paranoia I had decided that I have to sing before I lose the ability. I can already recognize an inability to hit a tone with my marginally diminished hearing. I can only imagine what it will be like when I am carting around my "dead ear" as the doctors called it. I prefer the term decorative ear. It's not totally dead to me, it's not like it will start decomposing when it stops hearing. It still will hold my earrings up. Plus I love a good pair of earrings. So I sang, to myself. At times I thought, this is ridiculous, but then I thought, this is therapeutic. It wasn't like I sang while I did other things, I only sang. I just belted out. Most likely to the dismay of my neighbors. I don't know if it made me feel better but it did make me see how I felt to begin with.

You see this weekend was different for me. It was not my regular "fun" weekend of studying and snuggling up next to a good book (or mediocre book, or text book, mostly just required reading books), I actually had to socialize. Which was great, I saw some of my favorite people and some I had lost touch with. I was there for other people, one of my favorite things, and I spent the weekend on my toes, presenting myself as the loving person I am. The person who up until the weekend was consumed in a selfish general hatred of all things healthy. I gave up my rage and replaced it with outward flowing happiness. And then, the weekend was over. Having come out of the safe refuge of my house and my homework I had started to let people back in. Not that the people I love most were ever out, all of you will never waver from the true center of my heart as you are all my world. But I had been isolating myself. And then I realized why isolation is such good protection, because when you turn around and go home you return to your "me" space. Which is great but being with people only serves to magnify that you come home alone. I worked hard to combat this feeling. I am overall, even with Herbert a very happy person, but I have my moments and last night was certainly one of them. I started calling all my "regulars" no one was picking up and then I just stopped trying because really I had nothing to say. What do you say? The immense love I was shown over the weekend, the consideration and compassion from a friend dealing with his own deep and difficult life moments, the love from a friend embarking on a new life's journey, the hugs from old friends, those had sunk me into a deep funk? No way, can't say that. I ended up silently sitting on the phone with Jason. Just sitting. It was better than sitting alone. Nothing made sense. Nothing. I mean why was The Voice on all night. Why did I have nothing to watch? Why did I suddenly think my deafness would take away my joys in life? Why was I so sad?

Blarg. Maybe it was just that I had a cold. Maybe it was just that I was overwhelmed with love and all I could do was collapse under the beauty of it all. I am not sure. I woke up today early, and got dressed up in another coveted outfit. I can't leave these outfits for janky faced Samira, they have to make their appearances now. While I can still use my face as an accessory and while my ears can still hear all the compliments I am sure to get ;) Jokes aside though, one part of the sadness I have been meant to face in this process of understanding my new normal is reframing myself as someone with a disease.

When you hear people talk about disease it can conjure up a lot of different images. For me I think of germs and outbreaks, people with SARS in their little masks. I don't think of me. Normal old me. It had stuck in my head that a few doctors had referred to Herbert as a disease. I remember brushing it off, thinking no, he's not a disease. I'm not diseased. I feel fine a lot of the time and even when I don't, no one would ever know. Diseases are obvious, they are gross, they are what happen to other people. I, I am not diseased. So in an attempt to prove this to myself I googled it.

Define: Disease

Here is what I got back:

Aw crap, I think I have a disease. I had to sit with the negative connotation of this. "signs or symptoms or that affects a specific location and is not simply a direct result of physical injury" I had no physical injury and I am affected. Oh man. Then I thought, okay, well it doesn't have to be such a bad thing. Then I had to stop myself from becoming that cliche where "my disease saved my life." My life isn't in need of saving. I don't need to appreciate the people around me better. I already appreciate them just fine. I don't need to be more giving, I give a lot. There is nothing left to give. I don't need a disease to tell me what is important. I know that. Life told me that. Love told me that. My friends and family have always kept me accountable to them, to love, to life and to learning. You don't need to be a victim to learn how to love. You just don't. But that doesn't mean I'm any less diseased. Ugh, at least you can't catch it. At least in my moments of darkness I can say, "hey, it's not my fault, it is just my disease." I'm willing to bet that would shut up any critics real fast.

So last night I was a singing, diseased, procrastinating fool. And today? I snapped out of it. I have focused on school and class already today. I am working hard and on top of my game. I think I needed last night though, to help me understand. To allow me to sit with the state of my life and understand where it all can go. I needed to learn to live in the now, even if the now isn't what I thought it would be when I spent my whole life looking forward to my tomorrows.

Tumor moments

So I've always had some tendencies to you know, be a bit flighty. Lose my keys, get easily distracted, lose my car, heck I'd lose my hair if it wasn't attached to my head! Now I feel I have an excuse.

The other day I left my iPod in my car before I was about to teach a yoga sculpt donation class. (More shameless self promotion- come take yoga sculpt with me every Monday at the DSCC at CU- bring can foods as weights and then we'll donate them!) I ran down to the car knowing I had just a few minutes to get my iPod. I ran into the garage at the entrance I had gone in and ran down the stairs. I walked down the aisle and there it should be! Oh crap! I had no idea where it was. I went down another floor to a largely deserted floor. Welp it's not here! I was frantically pushing the beeper. I could hear it but could not figure out where it was! "Good thing I have a tumor,"I thought. That would be super embarrassing otherwise.

There have been several of these moments in the last few weeks. When I use my trusty "Herbert made me do it!" excuse, people have a tendency to throw their smart asses in my face. "Well, what was your problem before?!" they ask with a smile playing on their lips. "Um, well," I say, "it was Herbert!" Might I remind everyone in my tiny blogosphere that Herbert has been living in my head long enough for him to have squatters rights. He has set up shop and has indefinite plans. It's not his vacation home, he moved in thinking that my brain and inner ear areas were perfect places to grow old. Well a ten year old in tumor years (like dog years) makes you elderly because it is almost his time to die.

I'll most likely be bringing you many of these tumor moments. It'll look like this: I fell down! Classic tumor moment! Ha! Or this: oh no, I walked into a wall and spilled coffee all over myself while walking, tumor moment! Will all of these things actually be the fault of tumor? Probably not. Is it possible I am just a jackass? Why, yes, it is quite possible. I hope that whatever the cause of my tumor moments we can all laugh together about them. Because laughter is proving to be my best medicine. The second I stop that ringing in my ears and the pressure in my head takes over. We can't let that happen.

In other news, actual updates are that Dr. Elliot and Dr Feehs here in town have the results of what their little convention has recommended. I will get those opinions next Wednesday. The Barrow institute has set my appointment for October 25th so Dad, Jason and I will be heading to Phoenix that morning. As far as how I feel? Kinda shitty. Lots of pain in my head and neck and I am for sure fighting off everyone's germs and colds. That being said, each day I wake up and consider myself lucky that Herbert didn't enact some kind of law and order style murder suicide. I die you die Herbert, watch yourself buddy! There was something else I wanted to say but I forgot, classic tumor moment! Anyway, so far so good I'm not dead and I'm not too depressed. I'm just in a stage of endless waiting and seeing and laughing.

Peace and love

Headaches and Smiles, who would have thought

So last night as I sat down to watch the pretty awkward and somewhat disappointing debate, the headache I had been fighting off through class came on full force. Not even witty remarks flying back and forth from Mittens and Barry were enough to keep it at bay.

I took 3 advil in the car on my way home from class and 3 more at home. Welp, it did nothing. Then I drank some water and quietly whispered, "Herbert, lay off, I am trying to tweet for the benefit of our country..." He didn't listen so I tweeted anyway (shameless plug, find me on Twitter @srajabi). About half way through my charming Twittering, I had to stop, the pain was just too severe.

I have become accustomed to headaches. Lingering, long term persistent headaches. This one was particularly bad. The throbbing was no longer isolated to the right side of my brain and had taken over my whole head and face. OUCH. I got the work I needed to for this morning done and abandoned any ambitions of working on my chapter or any further work I had planned. Somehow, between that and ordering perishable birthday gifts for someone online (you know who you are!) it was midnight. I had no idea what had happened. I got ready for bed and laid down. I set my requisite 16 alarms and hoped I would get up early enough to tame the moose nest on my head that I call my hair.

Well I did, and I even combed it a little. How is that for a success story?! Then I put on the nice dress in my closet that I have been saving for something special for almost two years. It dawned on me that nothing was apparently special enough for me, in my mind, to warrant risking my beautiful Leifstodder silk dress. So, I decided, today would be special. I would razzle dazzle my students today. I even put on my pink tumor lipstick (I dubbed it tumor lipstick because it was one of my many coping purchases)and I felt pretty darn cute walking out the door.

Class was really fun today, while I am not sure if I am getting through to anyone the class period was the first time since yesterday my headache had faded. I couldn't even tell that I had a weird, creepy, old man squatter named Herbert in my brain. We talked debates, we talked social media and we talked books. Given that their text book talks greatly about technology convergence and Amazon I felt it necessary to regail the students with stories of my obsessive Amazon purchases, from Quinoa to TP, I get it all. Since the book also talks greatly about the Harry Potter phenomenon of books, movies, and merchandise, I also felt it was necessary to let them know I waited in line for all the books and spent my glamorous new years at HP Land. In essence I embarrassed myself so that they can see that we are all products of our media environment but that doesn't mean we can't be critical of it. They laughed with me. They made really smart commentary and they participated. Even the folks that usually don't. It was great.

After class there was a man lingering by the front of the room while I tied up some loose ends with students who have been sick. I saw him lingering, I smiled at him and turned my attention back to my students. He had a CU hat on, he probably belongs here I thought to myself. Well he did, he is in charge of checking in on our student athletes but he really checked on me and made my day. He said he LOVED my class and wished he could take it. He had a refreshing personality and an excellent outlook on life. He understood the point of what I am trying to get across. We can simultaneously be inside a structure but choose to try and get on the outside to criticize it. He was so self-reflexive. He was so kind. He was a delight to talk to. It was one of those moments where we crossed paths on our life journeys at exactly the right time. He made me feel hopeful, and we weren't even talking about hope.

So I came to go to office hours, my extra vanilla latte in hand and I found my self laughing. I was laughing at the funny message I left for one sister and the funny text I was about to send for another. I was laughing that my dress, this coveted, special, gorgeous dress, was riding up my legs like nobody's business. I was laughing at myself. Laughing at everyone. I was elated. High on life.

Either that or Herbert has cut off some kind of vital blood supply to my brain rendering me goofier than I was, even before. Either way, it felt good to be my goofy old self.

My head ache is back. I'm choosing to ignore it. I am also choosing to ignore the tingling sensation on the right side of my head. Whatever. I look way too cute today to worry. We should never waste a good outfit on worry. And we should never just save them for a special day. Every day can be special if we just give it a chance.

I might just be in a good mood because the last thing I saw before bed was an Old Spice ad that told me to "Believe in my smellf"

Rough patch

The last few day have been tough. The reality of my diagnosis, while always present in my mind, has finally set in. I haven't worked out in days, currently I sit here half dressed for the gym looking for my motivation on my bedroom floor. I think talking to the folks at the Barrow Institute cemented the reality of what is happening. Being that they are the best in the biz, I could comfortably put off any decisions about treatment until I had talked to them. We had casually dubbed them "the Arizona people" since their office is in Phoenix. After every appointment here in town, as my confusion and frustration rose, we would say, "we'll, let's just wait until we hear from the folks down in Arizona, then we can decide."

Well we heard, and initially I was very excited. They recommended a "full surgical resection" and they don't even want to bother with the other choices. They told me what I wanted to hear (aw, hearing, sad day!) that they can give me a good chance with surgery. They are incredibly skilled and all the literature says that the best outcomes come from the most experience. I should feel better.

I suppose it is the finality that I fear. A decision was made, essentially, which means now I actually have to address the problem. It's like everything in my life, it will all be fine as long as we don't reach that final point. That point where things come to an end is always sad. It's like the bittersweet end to a vacation. You are ready for it to end but you can't let it go. It's like saying goodbye and preparing for the next big adventure. Even if the adventure is not the one you would have chosen. I suppose I'm just being dramatic. Maybe it's that I haven't been on any shopping sprees with my sisters lately because those really seemed to help. On that note, I should really figure out how to bankroll this tumor spree. Anyway, who knows, I am going to go workout.

Rubbing it in

So you all know by now that it has been about a month since I found out about my new normal, my uninvited guest, my ole pal Herbert. In the last month I've gone through a variety of emotional states, probably enough to last a lifetime and I feel like it may be helpful to put some of them here. Perhaps to get them off my chest, perhaps because they might be relateable. Perhaps because I am procrastinating.

I was never the kid to go out and party. I always chalked it up to self-respect, high personal standards or a lack of interest. Really it was always an intense fear of getting in trouble. Things already seem to go wrong at every turn, I am always messing up, then to add alcohol? The few times I did I felt kind of blah.. Anyway, this brush with Herbert (asshole!) has made me wonder if I somehow missed out. This lack of reckless behavior, has it gotten me ahead? Why not do drugs if your body is going to betray you at every turn anyway? But then, suddenly I realized that I haven't missed anything. I am smart, I am committed, I am doing things right. I think. I am though, right?

Of course there was this awful moment, of why do all this smart eating, smart working out, smart learning, it seemed like a waste of time. How can I be the person to have walked a straight line and have this happen to me. Most of my "why me" moments have passed but I still fall into that space every once in a while. Self doubt creeps in, just as it does as every doctor asks me what my treatment choice is. Do I follow my gut or do I listen to what they say? Do I hurry up and treat this or do I wait? Do I cut and run because it's hard or do I stick it out? How I can really run from my own brain, I am not sure - but the heart can hide from anything.

When I am not in hiding, I am researching. Desperately, hopelessly looking for the perfect answer. I am trying to find the person who says, I did this, I had no side effects, and life is hunky dory. Unfortunately it looks like life is not hunky dory. It is okay, it is adjustable, but there is no easy path on this portion of my life journey. I haven't found the perfection I am looking for. The doctors tell me to temper my expectations, to be prepared for the worst and hope for the best. I've always lived like that, I've always been a worst case scenario thinker. I'm the one always looking for the quick escape in case of a fire. I'm good at bad. I am calm in crisis. I am excellent at grief. What a skill set, eh? I haven't found my right answer and when I am feeling dizzy (like today) and my whole head is tingling the way my feet do when they fall asleep (like today) and the pressure in my ears is so heavy I think my ear might actually pop off (like today) I recognize that I have to adjust. I have to say that this is normal and this is ok. I have to say that I can do this. I have to debate my own demons and I have to win. I have to throw this pity party and then get over it. While I haven't found any answers that meet my incredibly type A standards, I have found new friends, support in places I would have never expected and been given strength by the people I never expected it from. I have seen generosity and I have seen withdrawal, and I have seen that lots of you guys love me even if you are not willing to say it and that means something.

That being said there have been things that I feel like just rub it in. In class last week we read about neurological receptors and understanding of visuals. We looked at a multitude of diagrams of the brain - RUDE. Then in another class we read about biological determinism, health science - why are women more prone to certain diseases? Hell, I got no answers but I did find that women are twice as likely to have acoustic neuromas. Thanks gender. The worst of it? Apple. Yes, Apple, and their stupid new iPhone, with its stupid new ergonomic headphones that fit into all the stupid ears that can hear all that stupid content. (Whatever, I want that phone but not for the stupid headphones.) Being that I LOVE TV, it is almost always on in the background, my companion that doesn't talk back and it it does I can change what they are saying with the click of the button. But lately, no matter what I am watching, I feel like I am being attacked by functional ears. Weird, curly, freaky, cartiledgy ears. Like this one:

and this one:

so that they can fit this:

Everytime I see this commercial I think DAMMIT I hate you weird looking ears! But then my left ear is like "Hey! I can still hear over here, I want those headphones." And I just want my inner monologue to SHUT UP! Suck it left ear - it's not about you right now.

While I seem to think that the world and the universe is just rubbing everything in I recognize that much of this is all on me. The world is what we make of it after all. Some days I am better than others. The days where I am poring over doctor reports on surgery outcomes versus radiation outcomes can get me down. Other days I get a call from the doctor who is allegedly the best in the world and I count that as a victory. (YAY! Phoenix here I come!) Feeling genuinely happy for the first time in a long time. Other days I just try to remember myself, who I am, what I stand for and I hold on to it. I am lucky because I have people that love me that help me remember who I am. My family, my friends, my students. When I am with Jason the whole world melts away and it is just us. I can forget my problems and learn and grow with him like we've always done. I am so grateful for those moments.

Then there are nights like last night. Where fear creeps in and I am afraid to close my eyes. Where images of ears and deafness and loneliness creep in, where reality sets in, life sets in. And not the kind of loneliness any one can cure, it's a loneliness that seeks isolation. It's not just life with Herbert, but a manifestation of a life with no control, a life without givens. A life with no absolutes. I don't want to be around anyone in these moments so I watch shows and familiar movies. I am afraid to be alone with my own thoughts. I am afraid to succumb to what my mind and body think or know intuitively, so I stay awake. It is in these moments that I trace the word laugh with my fingers. I cannot tell jokes, I can not be the jester in my own life when I am all alone late at night so I laugh at mindless comedy. I am too tired to work by that time of night so I just watch, laugh and force my eyes open. At some point I lose this game and my eyes close tight and morning interrupts my dreams. Then I wake up, struggle through the day and give up my caffeine in moderation motto and suck down espresso like it is my job. In the light of day the fears the night brings seem ridiculous and Apple rubbing in my pain seems like such a joke, but in the night, the reality is there and I have to confront myself, on all fronts. I have to try to reconcile the girl who wants that new phone so bad with the one that doesn't understand anything around her at all.

Peace and love - Samira