Paging Dr. Awesome McAwesomesauce (or How to not be a Dick)

Several of you have heard the back story about how I love my medical team...except for my neurologist...who was a Dick from the moment I met him. Allow me to elaborate...

Reminder: I had not seen Dr. Dick after my 1st seizure because the E.R. doctor and my general physician treated it like it was no big deal. Apparently that's common. 
1 seizure =  NBD, 2 seizures =  BD  <--- I sincerely hope that you never have to know this little formula. When I had my 2nd seizure, I was scared shitless that something is REALLY wrong with me.We made appointment right away with a neurologist.

Scene 1: Doctor's Office Examination Room
Dr. Dick (whisks his way into the examination room with both a laptop and an ipad): I'm going to be recording this, if you don't mind. Places ipad on examination table, already recording.
I didn't really mind, but now I wonder how he would have responded if I said "no, I'd rather this not be recorded."
Doctor: (looking at his notes on his laptop) So, explain to me in more detail about what brings you in here.
Me: (starts to explain the events since August 10th, the date of my first seizure)
Doctor: (cuts me off in the middle of practically every sentence while still not making eye contact with me. Waves his arm in front of of him like if he could just erase me from the picture, then this would all go so much smoother)

The one point that I remember him looking in my eyes was when he said:
Doctor: How much do you drink? And don't lie!

I can't even believe that this picture exists! So perfect!!!

Now, I don't know how much you know about me, but those that are close to me, know that this is what is called a "hot button" for me. Don't EVER accuse me of lying. I sometimes refer to myself as "pathologically honest". I hate surprise parties. I hadn't even entertained the idea of lying to the doctor about anything.  And what did I have to lie about? We own a winery. Yes, we drink wine -  nightly. I wrote on the freaking form we filled out before the appointment.

But it was out there, now. He thought I was a fucking alcoholic, and I'm having seizures because of "Alcohol Withdrawal Syndrome". What!?!?!

So, I googled that shit when I got home, and it didn't make sense. Yes, Steven and I are professional drinkers (errr. ...winery owners), but we had no problem anytime with going for days without alcohol. I never drank during the day - except for (hello!!!) Vegas. And certainly not on workdays!!! But 'cause I'm a type A personality, and I'm gonna do everything the doctors tell me to do - even the Dickish ones -  I stopped drinking. And guess what? I had another seizure two weeks later.  The E.R. doctor said, "hmmmm...That doesn't make much sense, does it?" Ya' think?!?!?!

Dr. Dick had looked up the most likely reason for my seizures and connected the dots. He really never listened to my story - because he kept cutting me off, plus he probably thought I was lying!!! And he came to the wrong conclusion.
Oh, to his credit, he did order an EEG and MRI (scheduled for 3 weeks away) because he saw something "vague" on my CAT scan film from my E.R. visit.  That's really the way he put it. "Something vague". Because the BEST way to deliver news like that is to be as ambiguous as possible. And by "BEST", I mean, the most "DICKISH" way.

Now, this is the time in the  story, kiddies, that some of you will be gnashing your teeth, and shouting "Sue his ass!" and other unflattering things. And I get that. But I have been assured by numerous respected doctors since then that 1) the tumor was so small and in such a hidden place that it wouldn't really be visible on a CAT scan (except as a really "vague" shadow, which he did see) and 2) Who the hell knows if another neurologist would have been more Johnny-on-the-Spot in this situation? And as far as I know, it's not illegal to be a DICK.

It's water under the bridge. I have other fish to fry. Big, Big Fish.
The real priority was getting another neurologist that I trusted. And so we come to the happy part of my story...Hey, I'm not promising you unicorns and rainbow, but this is good stuff.

Okay...ONE unicorn, but only because you said "please":

You're welcome.

 So, fast forward to my appointment Wednesday at UCSF. GAWD, it's hard to get an appointment with a neurologist! We met Dr. Awesome McAwesomesauce.  
note: I'll be referring to him as Dr. Awesomesauce from now on to save space. I will have to be careful to NOT refer to him that way to his face because it will be awkward for him.

Scene 2: Dr. Awesomesauce enters the examination room, shakes Steven & my hands and sits down.
Doctor: (looks me directly, earnestly in the eyes) I'm sorry that you are going through all this.
Me: (Trying not to cry in gratitude.) Thank you... <throat clenches up>

I know it is probably part of the training that medical staff get because I've heard this statement numerous times from my oncologist, radiologist, nurses, technicians...

I'm sorry that you are going through all this.

So,....WTF?!?! Was Dr. Dick sick for that lesson??? It's such a simple phrase but it means a lot.

Dr. McAwesomesauce went on to look me in the eye during the entire appointment  - unless he was showing us something on his computer.

Not actually Dr. McAwesomesauce. I'm pandering...

He showed us all kinds of cool pictures of the brain with cross-sections and stuff, and talked about where my seizures were most likely coming from and where my tumor cells are. And you know what he said?

Dr. McAwesomesauce: You could find this yourselves online. Just google that shit.

Okay, he didn't say "that shit". I added that. See! I cannot tell a lie.

Steven asked a million questions..which made him even cuter than when he shaved his head and became a Bald Hotty. Some questions, Dr. McAwesomesauce couldn't answer because...he is smart and competent and cool and everything, but unfortunately he doesn't have a crystal ball...or unicorns...or rainbows....

But he did say that I might actually be able to drive again! What???
My Audi A3...

My preciousssss........

You see, California law states that you can't drive if you have a seizure condition that affects your consciousness or impairs your right side (because it might interfere with the gas pedal/braking), but my seizures don't affect my consciousness and are very specifically localized on my left side of the face. Sometimes I even talk right through them - being careful of tongue, of course. And he would be very comfortable with writing me a letter to the DMV (when the time comes) stating that I am, indeed, perfectly capable of driving. Woot! And that, my friends, is better than any rainbow or unicorn.

There was some heavy news, too. I think I had already processed this, but Steven hadn't realized that I will (probably) have to deal with seizures for the rest of my life. The hope is that we can eventually wean me off of some of the medications, but that is likely to be a part of our new life.

But it's not the seizures that I'm focused on. It's the LIFE part of it.

So, I hope you have found this post helpful in some regard. Please pass it along to anyone that you know who is in training to be in the medical field.  Or have them skip to the Cliff Notes. I know how busy they are, memorizing bones and arteries and stuff.

Cliff Notes: "If you want to be a Dr. Awesome McAwesomesauce instead of a Dr. Dick"
1) Make eye contact with your patients.
2) Show empathy.
3) Listen...no, really LISTEN to what they are telling you.
4) Don't jump to conclusions.

Caveat - My brother pointed this out, and I think he's right. if you're House. I mean, brilliant beyond brilliant and always get the diagnosis right, then you have a FREE PASS to be a dick. The problem with this is that I think that an awfully lot of doctors imagine that they are House.
And they're not.

P.S. If you have any choice in what kind of doctor to be, the choice is simple:

I'm not going to be responsible for an argument about Who is the best Dr. Who, so I leave you with Tardis.

Hear Ye! Hear Ye!! The Radiation and Chemotherapy Doth Commence!

Today is a Banner Day as far as my cancer treatment goes. I'm not sure if that's exactly how  I want to characterize that though. I picture king's men riding on regal horses,  carrying banners that say: "June's First Day of Radiation and Chemotherapy" - which would be really long banners, and a horse might trip and hurt himself.

And for some reason, that makes me think about that Monty Python scene from The Holy Grail. (Hey, I wasn't a MP nerd...my  brother, John,  was. I'm just guilty by association...)

After viewing it again, it's still makes me laugh out loud, but I think you should only click on this link if you have already seen the whole movie. Given this context, this may be a new level of "dark humor" for me...

 

"But I'm not dead yet!"

"You soon will be!"

"I"m happy! I'm happy!"

(Forgive me. I blame it all on my parents, John & Judith Fremer.)

Damn! I'm throwing everybody under the bus today. Look out!

Today, I start my radiation and chemotherapy. I had my "Sim Session" (That's what all the cool kids are calling it. Errr, rather, the nurses and radiation technicians in the office.) Just like I suspected, I didn't get a joy stick  to play with or ANYTHING!  For goodness sake, Mario Brothers on the old gameboy was more fun than this. No, that's not dramatic enough...
The original Atari pong game was even more fun! Seriously. And if you're not old enough to remember that, google that shit. (I'm getting t-shirts made up with that phrase. I swear. And I'm sure that google's legal team won't have a problem with it. In fact, I'm sure they'll thank me and want to order dozens and dozens.)

Okay, I know it looks cool, but trust me on this one....not at all fun.

Have I taught you nothing, Young Grasshopper?

Sure, it probably is pretty cool for the doctor and the technician, but not so much the patient.

 Oh, what's that you say? It isn't intended to be fun but rather to save my life? Ohhhhhh! Well, that's a horse of another color! In that case...Bring it On!!!

I have all my Super Power accoutrements: bracelets and necklaces and Strength & Courage stones, and crystals, and even a flying squirrel. Bring. It. On.

Yesterday, during my "Sim Session", I thought about April & Coffey's wedding and Steven's & My wedding to distract me from The Mask. Aren't weddings the bomb-diggity? Everyone is happy, and people get together that never get together...why do we do that???? I think we should get married a lot more frequently.

April 28, 1990

August 10, 2013

 Or how 'bout this: not wait until someone's wedding to get together??? Doesn't that sound like a plan? (And a lot less expensive, too, I might add...)

"I feel happy! I feel happy!"

P.S. It's the small things in life: it made giggle to create labels for this post, including cancer, braincancer, treatment, radiation, chemotherapy, and Monty Python....

P.P.S. They want us to dress up like a super hero for radiation treatment on Friday. Guess what I'm going as!  DUH!!!

The Incredibly Long Post in Which I Tell you About My Haircut - and possibly other things

My treatment officially start tomorrow. I have a "simulation session" today - which sounds like fun...like when pilots get to fly fake planes, but they are in no real danger of crashing?

I think it might not be so fun for me. But hey, if it's good enough for Scully, it's definitely good enough for my radiology technicians!

In preparation for the start of treatment, I had a few things on my to do list;
1) Get a flu shot. Done! (Please get this done! It doesn't just help you. It helps everyone around you whose health might be compromised.)
2) Eat as healthy as possible. Done! (Who knew that kale, carrots, ginger, and celery, etc. could taste so good in liquid form? Thank you again, Mom & Dad, for the awesome ninja juice juicer!)
3 ) Walk every day to be in kick-ass, ninja condition for the battle ahead. Done! (Oh, and thank you, Steven, for letting me hold your hand every day on our walks. It's mostly 'cause I love you, but also because my anti-seizure meds make me a little uncoordinated, and I'd hate to fall down and crack my head open on the concrete. Would that actually be ironic? I don't know. Damn you, Alanis Morisette! You've left us so confused!)

I had one thing left to do yesterday...

4) Get a shorter haircut. Because a) I'm going to lose patches of my hair from the radiation and I thought it would make the transition less traumatic. Besides, I may be able to do an elaborate comb-over. (The rest you are laughing, but there are men of "a certain age" that are nodding right along with me, thinking this is a GREAT idea!) and b) Dealing with the sheer amount of weight I had on my head was ridiculous. I still get a smile on my face thinking about whoever it was that had to deal with my hair going into my surgery. Don't get me wrong. I don't remember one iota of it.

But I woke up like this:

 

Pay no attention to the expression in my eyes. I was still very loopy from the meds they had me on. Focus on the fountain of hair that was sticking out of the top of that bandage. And some poor sap was responsible for dealing with that??? Can you just picture that conversation?

Nurse 1: Hey, you! Uh...how are we going to get this bandage around Rapunzel's head to wrap this wound? 

Nurse 2: Oh, shit! Just wrap it up and let it stick out the top. Maybe she'll get a haircut after she sees how ridiculous she looks! 

 [I'm assuming it was nurses since we KNOW that no doctor has to make decisions about what to do with the hair that is in the way and such. ]

I take that back...because they didn't shave my whole side of the head. Which they could have. Someone carefully shaved a neat corridor just along the incision line. And it's hardly noticeable with the poofball that is my hair. Now, that I think about it, that was probably nurses, too. So, give it up for the nurses at Good Sam Hospital! 

When I made the decision to get the haircut, I solicited recommendations on Facebook, and I got a great number of leads for a potential stylist who could deal with my tender head and my gnarly wound from the surgery. Only fucking Facebook sucks, and I had to spend at least one hour trying to find the fucking status update with all the comments that I POSTED in order to retrieve the information. Seriously. Facebook fails at life. I'm seriously considering telling Facebook to suck it and going with twitter (So, follow me on twitter if you like that sort of thing!)

And...we're back! Haircut...recommendations...I remember what i was saying...

I decided to go with Jennifer at All About Me Kids Salon. No, I'm not a kid...but it is all about me after all, isn't it? Rachael (Lavezzo) Sims Snedecor... recommended her and assured me that she had tons of experience with cancer patients. As it turns out, she cuts hair for a lot of autistic kids, so...if you're looking for a kind, gentle, otherworldly empathetic person to do some hair...look no further. And she does a fair number of adults, too. I was disappointed that I didn't sit in the race car, but I got over it quickly.

First, we took care of the snip-snip to cut off the 10" pony tail to donate to Locks of Love. It doesn't look like 10", but my hair is so curly!!!  Some kid with alopecia is going to score the jackpot! Not only is this hair curly, but it was once worn by a certified Kick-Ass Ninja Warrior! Hello?!?!

Then, Jennifer went to town cutting my hair. I had shown her some pictures of what I wanted, and she nailed it! and while she cut my hair, she was sooooo sweet and genuine and put me completely at ease. As chance would have it, her father has just finished his own radiation treatment for a head tumor. Only his was right behind his eye, so (if your squeemish, you might want to skip the next few sentences) in addition to the "mask of horror/torture" that I have got to wear, he also had to slide a metal plate under his eyelid...every fucking time. 

So, you won't hear me complaining about the mask because as the old cliche goes, "It could always be worse!" Shit. That just gets to me. A fucking metal plate on his eye. 

Fast forward and Jennifer has finished, and there were hugs and I'm convinced that she is something not of the earth. I can't thank you enough, Jennifer, for your generous spirit and time. 

All that I can do is this: when someone asks me, "Where did you get that cute, sassy haircut?" I can say, "Jennifer at All About Me Kids Salon!"

Just take a moment to scroll up to the post-surgery, drugged out version of me and compare to this last picture. This nothing short of miracle, no?

A Fair is a Carnival without Rides?

I think there is an official phase after everyone's cancer diagnosis where they turn into a two year old who has been told they have to take a nap and when they all wail, "But it's not faaaaaaiiiiir!"

[Side note: Ironically, that's one of the few perks of having cancer - naps are AWESOME - and everyone encourages you to take them. I never really appreciated naps before, but now, I'm their number one fan. Except for Jill. But I'm a close second.]

But about the whole "It's not fair" thing. It goes something like this:
Doctor: You have cancer.
Patient: But it's not faaaaiiirrr!!!
To his credit, the doctor doesn't pull out the old nugget: "a fair is a circus without rides"... or is it "a fair is a circus with a rides"???

Either way, I've never it thought made much sense because I'm pretty sure that I've been to circuses and fairs that both have rides. However, I think fairs don't have clowns, so that may be a more accurate statement. Although that wouldn't be relevant to the whole ""napping is unfair" business. But it might make so little sense that it would shock a two year old enough to quit whining, and say, "Wha'?!?!"

Besides, if you threatened to take them to a circus, that might get them to take a nap. Because a lot of people I know are really scared of clowns. Like, PHOBIC about it. (I googled that shit and the official word is: "coulrophobia")

And is it any wonder with pictures like THIS circulating around?

I'm not particularly phobic about clowns, but this is creepy, no? 

So, helpful little tip for our moms with young children out there. Instead of trying the "a fair is a circus without rides" ploy, you might want to try, "If you don't take a nap, I'm going to bring you to see the clown." Feel free to print out a copy of the picture for added emphasis

See! This isn't only a blog about a woman with brain cancer. It includes helpful little tidbits of parenting advice. You have my permission to share with all your Mommy & Me groups. Bonus!

Steven and I did go through a brief "It's not fair!" period. You start thinking of where you are in your life and how much you have left to accomplish, how much you would miss if you weren't there...I think it's a natural reaction.  Especially since it seemed like we'd hit a particular sweet spot in our lives. I had finally started working on the winery (which has been a dream of ours for so long!), our first grandchild is on the way, we're talking about FINALLY moving up to Livermore...and after 24 years of marriage, I've never been more in love of my Schmoopy/Bald Hotty as I am today.

But then I started thinking about the concept of "fair"...."Fair"? Really? And I could name hundreds...thousands...MILLIONS of deaths that were "unfair".  Let's just start with the holocaust, shall we? And we read about "unfair deaths" every day in the paper, see them on the t.v....babies and teenagers and young adults and couples with small children and older couples with grandbabies...
Is it really ever "fair" to remove them from the lives of all the other people that love them and want them to be around for really a long, long time?

"Fair" isn't the right word. The word I keep coming to is "random". It's so fucking random, who lives and who dies. We all know people who smoke like a chimney, drink like a fish, never exercise, and are in no danger of dying anytime soon..

or are they?

Sorry to be a such a bummer. But death is really random like that. Maybe they won't die of lung cancer, or psoriasis of the liver, or a heart attack, but they could die of...the FLU (notice that I didn't feed into the whole ebola hysteria?). or getting into a horrible car accident that they didn't even see coming. or getting pushed into the path of train/subway....or getting smothered by a clown in the forest (Hey, he was only trying to give you a hug!)...

because LIFE/DEATH is fucking random like that!

I read an article several days ago that stuck with me about the London Beer Flood that happened 200 years ago on October 17, 1814.  A  3-story tall vat of porter exploded from the pressure of the fermentation process and unleashed the weight of 570 tons of liquid, which ended up causing a chain reaction. The force of the explosion sent a wall tumbling down. Nobody died at the brewery, but eight people in adjoining tenements were killed...one of which was actually mourning the death of her two year old. You wanna talk about random??? You all want to join me in a collective, "What 'da fuck??!?!"

One of my wise friends said, soon after I revealed my diagnosis, that "the last I heard, we were never promised tomorrow." We only really have today - all of us. Not just someone with cancer. ALL. OF. US. So, get busy living it! Before you get murdered by a clown offering free hugs or are crushed by a tsunami of beer.  And for goodness sake, stop whining about what is "fair" and "not fair". Unless you're two and your mommy is talking about taking you to see The Clown.

The Fires of Mordor

Some people may be wondering why the hell I'm writing this blog. Contrary to what some of you may be thinking, I'm not an attention whore. However, Steven might be. The jury is still out. The whole "shaving the head" thing is a little suspicious.

Oh, shit. He probably just read that, huh?
<activate damage control> 
Love you, Schmoopy! No, YOU'RE Schmoopy! <3
 Phew! I think I'm safe.

I recognize and respect that some people approach the situation very differently. Every one has their own journey. Some people gain strength from turning inward and going to the stillest part of their soul. Silence and meditation.

Other people like...<eh hem> say.... me, need to channel all their personal resources into a big ball of fiery energy/rage/power and shout "RAWWWR!" from the rooftops. 

For me, it's like if I don't actively talk about and acknowledge this horrible thing that is happening to me...sorry... US...it still exists somewhere....I don't want to think about the deep, dark recesses of my mind that would glom onto those thoughts and how it would fester and bloom.

[Must. resist. making. Harry. Potter. references....]

Yesterday, I had the pleasure of having a long talk with a friend...a friend who is very private and wouldn't want for me "out" her, probably. So, I'll use a pseudonym. Let's call her, "Shmoozanne".  (See how slick I am? ) I met "Shmoozanne" at work when we had adjacent classrooms. Many, many afternoons, after school was dismissed, we would wander into each other's rooms and talk for about an hour (or more), successfully avoiding actually working. We would talk about family and friends and movies and ...well, LIFE. That's when I first realized how precious a friend she was.

I've said many times that getting to know her changed the way I thought about life. Whoa! But I mean it. For real.

(Steven, you're my witness! Unless you stopped reading after the whole "attention whore" comment. I swear, it was a JOKE! Did I mention that I've brain cancer? FREE PASS!)

You see, "Shmoozanne" is a Stage 4 breast cancer survivor...Nay, that's not enough. I would go so far as to say that she is a Mother Fuckin' Breast Cancer Fighting Ninja Warrior. She's about 100 pounds soaking wet - a wee little thing - but she's a mighty warrior. She's been to the fires of Mordor and back again. She's seen some shit.

(Hey, look at me go! I made another LOTR reference instead of Harry Potter! Go, Me!)

Long before I found out about my brain cancer dealio, "Shmoozanne" had a way of cutting through the bullshit and making me see the Big Picture. We lead similar lives: about the same age, with kids close to the same age, dogs, teaching and such.

One thing I had hoped that we wouldn't ever have to share was the whole cancer thing. But you know what? Yesterday, there were things that I was able to say to her that no one else could understand.
 [And I don't want to detract from what anyone else who supporting me.  I am so grateful for ALL OF YOUR LOVE and SUPPORT!!]

 But there are things that I'm sure only Frodo and Sam can talk about because they lived the shitty trip to Mordor. Here it comes...another movie reference. But I promise this will worth it...
 

Frodo: I can't do this, Sam.
Sam: I know. It's all wrong. By rights we shouldn't even be here. But we are. It's like in the great stories, Mr. Frodo. The ones that really mattered. Full of darkness and danger, they were. And sometimes you didn't want to know the end. Because how could the end be happy? How could the world go back to the way it was when so much bad had happened? But in the end, it's only a passing thing, this shadow. Even darkness must pass. A new day will come. And when the sun shines it will shine out the clearer. Those were the stories that stayed with you. That meant something, even if you were too small to understand why. But I think, Mr. Frodo, I do understand. I know now. Folk in those stories had lots of chances of turning back, only they didn't. They kept going. Because they were holding on to something.
Frodo: What are we holding onto, Sam?
Sam: That there's some good in this world, Mr. Frodo... and it's worth fighting for.

Booo- yah! Give it up for Sam and Frodo!

So, let me break it down for you:  in this analogy, Shmoozanne is kind of Sam. Only she is (slightly) taller than a hobbit. <giggle> (Sorry. Cheap short joke.) And I'm Frodo - except my feet are (slightly) less hairy. (Even cheaper hairy foot joke.)
Come on! You get the point!

Both of us know that IT'S WORTH FIGHTING FOR. And more importantly, what "it" is.

I've come full-circle - back to the whole "why I'm writing this blog" question. I know that it might sound nonsensical for a Ninja to be so loud and have a potty mouth. After all, aren't ninjas supposed to be super quiet and stealthy? But that's my Super Secret plan: I'm going to lull the enemy into thinking that I couldn't possibly a Ninja Warrior, distract him with some squirrels and hedgehogs and other ridiculously cute animals, throw out a bunch of film references, and when he least expects it ... I'm gonna open up a can of whoop ass on him!

Booo-fuckin'-yah!

The Outlier

I've mentioned before that I have not -  nor will I EVER - google the type of cancer I have and read about the survival rates. Much as I love google, I know all that I need to know already, thank you very much.

Statistics mean nothing to a Mother Fucking Brain Cancer Fighting Ninja Warrior like me. (My father, who has a PhD in statistical measurement is probably developing his own seizure disorder after reading that. And not because of the cursing. He has a bit of potty mouth, too, when he gets really riled up about something. You know what they say: "The apple doesn't fall far from the tree!")

But seriously, the outcome that we're hoping for is what we call an "outlier" in statistics. An outlier is data that is outside the statistical norm. In the world of testing, if they see data that is way outside the average, they suspect you of cheating. In the world of the lottery, if you get an outcome that is way outside the statistical average, they call you a lucky bastard. And if you get struck by lightning, it means the opposite - you are one unlucky bastard.

Okay, I just googled that shit...

[Side note: Don't you love google? Steven and I were just talking about that on our walk yesterday. You see, kiddies, in the world before google, when you were curious about something, you couldn't look it up right away! And sometimes, you could never find the answer! Imagine that world...all those of you that were born after 1998, when google was started. (yes, I just googled that. DUH!) The rest of us don't have to imagine it, because we LIVED it. While we were walking uphill to school, both ways. Oh, the horror! the horror!]

Anyway, I looked up the statistics on getting struck by lightning and it's actually a little bit deceiving. Your chances of getting hit by lightning in any given year are 1:1,900,000. But in your lifetime, it's 1: 12,000. Improbable, but not as unlikely as we might think.  They don't specify if these guys are walking around a golf course with a gigantic umbrella while wearing chain mail.
(strangely enough, there are no legit image results when I googled "chain mail and golfing". Bummer. I was thinking that a good visual inserted right here would be just the thing. Google, you disappoint me.)

But  then I found THIS:

Which is actually better. I take back everything I said about you, Google. <smooches!>

But let's just say, without using actual statistics, that my odds are not as good as avoiding lightning. It doesn't matter!

Because, you see, I'm looking to be the OUTLIER. The statistical anomaly that makes statisticians twitch.

In fact, I'm thinking of getting my name legally changed to June Ellen "Outlier" Fremer Mirassou.

Well, that's just ridiculous, isn't it?

So, let's get rid of the Ellen, shall we? I'm not sure where the Ellen came from anyway (Sorry, Mom!), but it's far too vanilla for me.

Okay, so my new name is: June "Outlier" Fremer Mirassou. Oh, and let's not forget my suffix: Mother Fucking Brain Cancer Fighting Ninja Warrior. But I'll just use the initials, because that gets rather unwieldy.

Done.

June "Outlier" Fremer Mirassou, MFBCFNW, at your service!

A Primer about What to Say to a Person Who has Brain Cancer

By June Mirassou — Oct 21, 2014 8:23am

In the interest of full disclosure, this blog really is only going to be a primer about what to say to ME, rather than every person who has brain cancer. I know everybody processes things differently and has different needs. (In education, they call this "differentiation," which is just a fancy way of saying that one size does NOT fit all - no matter what the Home Shopping Network says.) Besides, I truly hope that you don't need a primer for multiple people who have brain cancer because that would suck. For you and the multiple people.

That being said, I have divided this entry up into handy-dandy sections with separate headings, so you can refer to as needed. It's even alphabetized. It's either because I'm super thoughtful, or I have OCD. Which really should be spelled CDO because that's alphabetical, yes? Okay, that was a really cheap joke. Sorry! Still makes me laugh.

GREETINGS
I know it is difficult for people to know what to say to me and Steven when they see us for the first time in our current situation. Even saying, "How is it going?" or "How are you doing?" seems awkward for many of you. (FYI, It's not awkward for me at all!)
"How's it hanging?" however, is super awkward. In any situation.

I just looked up "How's it hanging" on google, and here's the entry for urbandictionary.com:

How's it hangin is a polite greeting from one man to another. "It", in the context, is the man's penis. Presumably if it's hanging well, the man is doing well.

Jerry: Hey John, how's it hangin? 
John: Long and low, Jerry, long and low! 
Jerry: that's great!

I'm trying to imagine the universe in which this is a "polite greeting" between two gentlemen. Clearly, it is not the universe in which I exist.

So, make a note to ourselves, shall we? "How's it hanging?" is a really awkward greeting for a woman who has brain cancer.
Got it? Now, let's move on...

PICTURES OF BABY ANIMALS, CUTE GIFS, SQUIRRELS, and ANYTHING ELSE THAT MAKES ME SMILE
I don't have much to say beyond that. It's all good. The Power of Pinterest is highly underrated.

PRAYERS, POSITIVE THOUGHTS/INTENTIONS, KARMA, HEALING VIBES
Whatever you call them  - keep them coming! I am so humbled by the overwhelming response from my friends and family, near and far. I hang every card/email/picture up on my wall near my bed and am wearing every token of solidarity and expression of miracles that I have received. They remind me every day that "No one fights alone!" and I have a whole army of "June's Warriors" out there supporting this Mother Fuckin' Brain Cancer Fighting Ninja Warrior. I try to live every day without letting you down.

REASSURANCES
I know that it is counter-intuitive, but I don't want to hear reassurances like, "It's going to be okay." or "I have a really good feeling about this". You see, several (very well-meaning!) people said this when I started having seizures, and I believed them. Then I found out that I had brain cancer. So, it's not particularly reassuring to me when you look into your imaginary crystal ball and pronounce something like that. Unfortunately, NONE of us has the power to predict my future. Don't get me wrong. I'm thinking good thoughts and appreciate the positive intentions. But I'm really trying to stay in the present because looking into the future makes me crazy, and I cry a lot

SYMPATHY
Speaking of sympathy...It's soooo sweet to hear expressions like "I'm sorry that you're going through this, " and "This really sucks". Both are appropriate and appreciated. Also, it's totally appropriate to cry sometimes - and I will probably cry with you. Wailing and beating your chest might be overdoing it.

</rant on> One thing that I definitely don't want to hear is anything about someone you knew that had brain cancer and fucking DIED! I know that is one possible outcome of this whole thing, but let's just say that is not something that I would like inserted in my thoughts.


Some of you are probably thinking to yourself, "No one would possibly really do that..." but they do. I don't have any explanation. Just...WTF????


Oh, and Technology Hint: Even if your are responding to someone else's conversation on Facebook, if I'm tagged in it or have responded to it, I can SEE IT!! Hello?!?! McFly?!?! Please keep this to yourself. I recognize that this is pretty selfish. So, if you just can't help yourself and you NEED to talk about it, go to the nearest closet and whisper it to get it off your chest. In the Facebook world, it's called sending a PRIVATE MESSAGE. The point is: It is NOT helpful to me, and I don't want to hear it. Period.
</rant off>


SCHMOOPY AKA THE BALD HOTTY
In a previous blog post, I referred to our friend Chuck as being the luckiest bastard on Earth, but in actuality, I am the luckiest bastard (bitch) in the universe because I found my Schmoopy - AKA The Bald Hotty. He deserves every compliment that you say about him...and then some! Not only is he unbelievably kind and sweet and strong and sexy, he is a kick-ass Dad. And he makes wine that will make you swoon.(Bonus!)

I don't really think there is an English word that fully captures him. In Yiddish, you would call him a "mensch".

[Side note: Steven and I listened to an NPR "All Things Considered" about untranslatable words that is really interesting. Check it out! http://www.npr.org/blogs/parallels/2013/08/30/217266980/how-do-you-say-for-some-words-theres-no-easy...]

Unfortunately, "mensch" was not one of them, so I looked it up for you. Wikipedia says: According to Leo Rosten, the Yiddish maven and author of The Joys of Yiddish, "mensch" is "someone to admire and emulate, someone of noble character."
Now, if I could find a word that incorporates this and also connotes that he's a hotty, it would be perfect. NPR? A little help here!

So, that is really all I can come up with right now. Maybe I'll need to put out a second edition as time goes on. I hope you find useful.

In all seriousness, there's nothing really that will offend me at this point, so feel free to ignore all this advice I've given.Except the part about talking about people who've died. I'm serious. I won't say "dead serious" because that would be another cheap joke and in poor taste.

The Mirror of Erised

By June Mirassou — Originally Posted on Caring Bridge, Oct 19, 2014 10:09am

The other day, the title of an article flashed across my Facebook newsfeed that went something like this: "The Percentage of Time We Spend Hating Our Bodies". I didn't click on it because it sounded thoroughly depressing. I know that I have spent my fair share of time looking at myself in the mirror and focusing on my imperfections. I don't need some reporter to remind me.

Although I didn't read the article, the concept stuck with me. After I finished my shower yesterday and was getting myself ready for the day, I stared at myself in the mirror. Only I willed myself NOT to focus on the squidgy parts that I deem a problem. Instead, I stared right into my own eyes and thought, with conviction, "This is the body that is going to battle cancer - and win!" That changed everything, and I surveyed my reflection with a new respect and awe. Those lumps and bumps don't matter.

This is the body of a Mother Fuckin' Cancer Fighting Ninja! I should have my own trading cards and action figures and shit, no?

Whoa! Whoa! Too much?

Okay, how about this?
Instead of thinking about what is WRONG with our bodies, what if we focused on what is RIGHT? Instead of obsessing about what our bodies CAN'T do, what if we fixated on what our bodies CAN do? Right now. And really appreciated it.

Hey, maybe I'm still having those annoying seizures, but you know what? I can take walks with my husband and talk with my family... (My brother says I have a certain Christopher Walken quality to my speech these days. I'm going with it.)

i can read the lovely messages of support and love from all my family and friends...and cry (good tears)!

I can feel Big Hugs (The BEST!) and puppies' soft fur and kisses when they say "hello" and "good morning" - and even hear their barks when they say, "Squirrel!"

I can't taste the yummy wine that Steven brings home, but I can smell it. Did you know that most of your taste comes from your sense of smell? We only can really taste four things: bitterness, sourness, saltiness, and sweetness. All the rest of what you get from a sip of wine comes from the noble nose! (Hey, so next time you see that person swirling and sniffing their glass, try not to be so judgy!) Meanwhile, I'm developing a serious obsession with caffeine-free, herbal teas.

Sorry for making another Harry Potter reference, but J.K. Rowling kicks ass and is probably a stealthy Ninja in disguise herself. (Besides, it's fun to annoy Mike Alexander from time to time.) In her first book, she develops this trope, "The Mirror of Erised". You see, this mirror is special because if you look in it, it shows the "deepest, most desperate desire of our hearts." (Erised is desire spelled backwards. Hey, she's a children's author, so she's allowed to be on point like that.)

Where was I going with this...
um...Squirrel?

No.

It is said that "The happiest person in the world would look in the mirror and see a reflection of them, exactly as they were."
Thwump. <drops microphone>

Another Reason to Hate Miley Cyrus

By June Mirassou — Originally posted on Caring Bridge, Oct 18, 2014 8:48am

Wow! I know that sounds harsh...and maybe I should change the title of this entry to "Another Reason to Feel Sorry for Miley Cyrus"? But I have brain cancer, so fuck her if she can't take a joke.

You see, every time I see her picture with her tongue sticking out like that, I think that is exactly what I looked like when I looked in the mirror just as I was having my second seizure. But let's backtrack first, shall we?

On August 10th, I had my first seizure. It was a "grand mal" or "tonic clonic". Neither term seems to capture the true essence of what it was like. "Grand Mal" sounds like the depressed state of French teenager and "Tonic Clonic" seems to describe a bizarre cocktail that one would use to cleanse the ...<eh hem>...lower portion of your digestive tract. In reality, a "general seizure" is more like being taken on that amusement park ride that you begged not to go on...the one you threw up after...the one you get willies any time you even think of it even to this day. The good news is that I was pretty much not conscious during the whole thing. So maybe I better amend that whole description to say that it was the worst ride that STEVEN has ever been on, and HE still gets the willies thinking about it.

I was rushed to the E.R. and poked and prodded, given a CAT scan (which was deemed "clear"), and pronounced "Okay to go home." The cause was chalked up to too much indulging after a weekend in Vegas. Guilty as charged.

Do you know that 10% of people will experience a seizure at some point in their life? Weird fact, huh? I went to my general physician and was referred to a neurologist, but we didn't schedule a visit right away. No big deal, right?

Oh, except you can't drive in California for three months if you've had a seizure. So, no driving my new, gorgeous Audi A3 for me. Which I thought was the worst of my problems at the time. Walking to work or having to get driven everywhere. What an inconvenience!

Almost exactly a month later, I had my 2nd seizure. I was alone and just finishing up working on my computer in the dining room. I went to put my contact lenses in at our bathroom mirror, and I felt this strange (not in a good way) sensation come over me. When I looked in the mirror, I looked like...well, MIley Cyrus (see picture). My tongue was sticking out of my mouth to the left and my whole left face was contracted. (Side note; Miley, honey, this is not an attractive look. Trust me on this one.)

Because I had already experienced a seizure once, I thought, "Well, shit. I'm alone. What do I do?" As a teacher, I'm trained in what to do if a student has a seizure, so I applied it to myself. I laid down on my side, on the carpeted floor, away from anything I could hurt myself with. And I rode it out. I never lost consciousness, but it was the weirdest thing (at that time, mind you) to not have control over my own body at all. I could feel it twitching and convulsing but I could do nothing about out.

When it mostly calmed down, and I was able to stand up, I immediately grabbed my phone and texted Steven at work. I couldn't speak yet, and I was terrified that I had had a stroke. But I was able to formulate sentences and communicate through texts right away. Steven later said that my texts were more coherent than his are on a good day. I went into the dining room and scrawled a thorough explanation (Did I mention that I'm a teacher?) on a piece of paper and woke Aidan up to call 9-1-1. By the time they arrived, about 5 minutes later, I was sitting at the dining room table and able to speak. I still got a ride in the ambulance to Good Samaritan. Whee!

Again, it was chalked up to alcohol related symptoms, but that didn't make any sense to Steven or me, so the appointment with the neurologist suddenly seemed much more urgent.

Can I just say, if I promise not to name names, that my neurologist is a dick? He was dismissive and impersonal. He kept cutting me off when I was trying to elaborate on what had happened in the last month. His recommendation: no more drinking for me. (If it means that I don't have anymore of these fucking seizures? Easy Peazy! DUH!) and an MRI scheduled for October 6th. (It was the second week in September, by the way.) Okaaayyyy...

So, now I have the dual "inconveniences" of no driving and no drinking...
{Joke that I saw on reddit: What do you call a person who doesn't drink but can't be your designated driver? An epileptic.}


 A week later, to the day, I had my third seizure. Again, I was working at my dining room table and decided to brush my teeth. Only this time, when the feeling came over me, I had toothpaste in my mouth/throat. I was terrified that I was going to choke. I tried frantically to spit out everything I could into the sink, but it was hard with my face contorted and contracted. Then I got on all fours so that the rest of it would (hopefullly) drip out my mouth. I rode out the wave...without choking, thank goodness! and then I started texting Steven again. Already, I was disturbingly calm with the drill. I woke up Katherine (who was visiting from Santa Barbara) and told her we needed to go to Good Sam's E.R. No ride in the ambulance, but it would be like the other times. At least I thought it going to be like the other times.

But life had other plans.

That time, I had another full body seizure in the E.R. That time, the E.R.. doctor said, "This doesn't quite add up, does it?" That time, I had an M.R.I., and we were told that it was a tumor. That time, I had fucking BRAIN SURGERY.  [Did you know that when they perform BRAIN SURGERY, they fucking cut your cranium open and use sharp instruments on your fucking BRAIN???? That's heavy shit. ]

Oh, and that time, they told us that it was cancer.

This is the deep, deep water. You know the old maps that said, "Beyond here, there be dragons." Yea. That's where we are now.

And I really couldn't give a fuck if I ever drink again. Or if I ever get to drive my Audi A3 (but it's still mine, Steven!!! Forever and ever!).


The weird thing is...I'm still having (more "mild") seizures every day. Multiple times a day. With THREE (count 'em) meds that are supposed to suppress them. The meds make me sleepy and slow, too. Fun. fun. fun. My neurologist calls them "partial seizures" 'cause they only affect my face. Did I mention that my neurologist is a dick? And it's really hard to get an appointment with another neurologist? (We have one on October 29th with a specialist at UCSF.)

But really, these seizures are only an inconvenience in the Big Picture.

What are you worried about today? What is "inconveniencing" you? I don't want to be bossy and tell you what to do (SIRI!!! You're rude!)...but I gently recommend that you get your priorities straight. And don't wait until you look like Miley Cyrus to do it.

A Free Pass? Sweet!

By June Mirassou — Originally posted on Caring Bridge, Oct 16, 2014 10:41am

Some of you that don't know me so well may think that I have undergone a personality transplant after reading my blog. Where did that dark humor (and all that cussing) come from? Well, it's always been there. Only I'm a teacher, and it's really best if we keep our freak flag hidden from public view. The public is so "judgy" sometimes...

So. I just didn't let my "freak flag" fly all the time, but it's been there all along. You need proof? Okay, this is one of my favorite jokes of all time. It goes something like this:

This guy has had a terrible accident and is in the hospital. Tragically, he has to have one of his legs amputated. Only, when he's in surgery - regrettably - the surgical team accidentally amputates the wrong leg. Once they realize their mistake, of course, they have to amputate the other leg, too. When the patient comes to and he is informed of the tragic error, he wants to sue the hospital...but he doesn't have a leg to stand on.

I know. Terrible. But I've told it countless times, and I still giggle when I come to the punch line.
Oh, and I just read another one on Reddit:

My girlfriend broke up with me because I kept stealing her wheelchair.
Don't worry. She always comes crawling back to me.

Come on. Funny, no? Okay, it might not be your cup of tea, but I recently discovered that I have a free pass. I can pretty much say whatever I want and play the Brain Cancer Free Pass Card. It's like a Get Out of Jail Free Card, only way cooler - but it comes at a much bigger price. <---unfortunately, that was in the small print.

Yesterday, Steven and I were visiting with two of my favorite people in the whole world, Chuck and Jill. When you look up "salt of the earth", their picture is there. (Geek alert: I just looked up "salt of the earth" to make sure that it means what I think it means.)

Wikitionary.com says:
(idiomatic) A most worthy person. 
(idiomatic) A decent, dependable, unpretentious person.

Yep, that's what I thought. Nailed it! Chuck and Jill's picture is NOT there, however. I'm sure that's an oversight which will be corrected soon.
Note to self: upload Chuck and Jill's picture on wikitionary website.

Anyway, we were discussing this Brain Cancer Free Pass thing, and I was saying that I have NO problem with anyone using it on my behalf. If you are in a bit of sticky-wicket and the problem can be solved by saying, "I just found out that my wife/mom/friend/whatever has brain cancer," let 'er rip. Or if you have something inappropriate that you really want to say to someone, but you don't dare...I'll be happy to do it for you! Followed by, "Hey, you know I have brain cancer, right?"


But Chuck, who is the luckiest son-of-bitch that I've ever met (and not just 'cause he's married to Jill) ...Okay, he's actually really smart about Business & Stuff. <-- If you don't have your MBA, that's a technical term for knowing how to make a shit-ton of money and live a bitchin' life. Well, he suggested that I might be able to monetize this whole Brain Cancer Free Pass thingy.

See, I told you he was brilliant! And he and Jill clearly wear their freak flags proudly 24/7. DUH! Who else would spend a glorious Wednesday afternoon in an Italian grotto in Sonoma, eating gelato, and talking about such things? My peeps!

So, I've set up my paypal account (junemirassou@gmail.com) and feel free to contribute to it whenever you feel the need to avail yourself of the Power of the Brain Cancer Free Pass. We're discussing creating a club so members could get a discount if they buy in bulk. I clearly need some more help from Chuck on the specifics, but the concept is out there now, so no one can just steal it!

You're welcome.

Fasten Your Seatbelts. It's Going to Be a Bumpy Ride.

By June Mirassou — Oct 14, 2014 9:34am

This is something that I've been thinking about lately. It's not easy to write. And it might not be easy to read.

The Good News: Yes, I'm a mother fuckin' Brain Cancer Fighting Ninja! (patent pending)  And I try to live up to that name every day.

But The Bad News: some times I fall short. And I cry. And I think about the other outcome. The one where the ninja doesn't win. I try to push the thoughts out of my head, as if it were like Voldemort, and if I don't speak its name, it has no power.  But we all know how that strategy worked out. Okay, those of us who are Harry Potter geeks know how that turned out.

If you're not, you're missing out. And don't google it, either, you cheater. You need to read all the books. No, not just watch the movies. Damn, you are a cheater!

Spoiler alert: Voldemort dies. And Harry Potter is a mother fuckin' Evil Wizard Fighting Ninja! (apologies to J.K. Rowling. I might have taken some liberties.)

But I digress. What were we talking about? Ah, yes. Death.

So, mainly what I've been thinking about - besides the obvious, "I don't want to die now, thank you very much."  - is how much more I have to left to say to my children. I mean, what do I want to my "final words" to be and when should I say them?

I believe strongly in the power of positive thinking, and planning what I'm going to say on my death bed sounds very counter intuitive. Not to mention that the thought of it makes me choke with paralyzing sadness and dread.

Yesterday, I woke up from a horrible dream. In it, my team of doctors were recommending that Steven and the kids read a book on "Grief and Mourning".  I couldn't shake it, and I walked around the house in a kind of depressed stupor for the better part of the morning. And I thought a lot about What I Want to Say to My Children.

Then I had a clarifying moment - one in which the whole thing was reframed.
Why the hell would you wait until you are on your death bed to tell your children (or anyone!) anything significant that you really wanted them to know??? It seems like you should do the exact opposite, no?

So, I went on thesaurus.com (yes, really. My kids can vouch for this - I am that big of a nerd.) and searched for the opposite of "death bed". Death is obvious. Life. But what is the opposite of "bed". Turns out, there are no antonyms for bed. At least not that I could find. I ended googling that shit and went to a bunch of websites with no luck, so it must be true. (P.S. If you come up with anything, please post it in the comments section!)

So, what do I want my children to know on my Life Anti-Bed?
I love you. I love you. I love you. <-- You can never say this enough.
I want for you the same kind of love that I have with your father. You don't have to call each other "Schmoopy" , but I want you to have the deep, solid love that I've experienced the past 25 years.The kind of love that makes you feel a little flip in your stomach when he looks you in the eyes and says, "I love you. No, I mean, I really love you." The kind of love that makes you feel safe just to know that he's there. I know April has already found it, and that makes me so happy! (Thank you, Coffey!) Of course, You don't have to get married to feel that, but I want all my children to have the opportunity to get married.  Love is love is love.
I have often said, "Love doesn't hurt. If it hurts, it's not love." What I mean by that is that the person you love shouldn't be hurting you, physically or emotionally, intentionally or thoughtlessly. If he/she is - cut your losses and move on. And if you are doing it to someone else, knock it off.
Live life without fear. Grab as many opportunities to experience new things and meet new peoples as you can. Say, "Yes!" (Unless someone offers to sell you a velociraptor. because they're extinct, so they're probably ripping you off.)

Mostly, though, at this point, I just want to say how proud of them, individually and as a group. Each of them has their own special gifts and strengths. I am awe of them. And together, they are the most beautiful team - fiercely loyal and protective, and so much love, love, love!

After all that blathering, I just realized that I have said all those things to my children already ...not just once, but multiple times. I didn't just say it, but I have LIVED it (except the velociraptor thing). And isn't that more meaningful in the long run?

The best thing that I can do for them now is once again lead by example. To be a mother fuckin' Cancer Fighting Ninja! And stare Voldemort...I mean Death... in the face and say, "Hiya!" as I give it a karate kick in the balls.

Who is that Masked Woman?

By June Mirassou — Oct 10, 2014 5:02pm

First of all, let me get something straight. I know I originally said that I had an astrocytoma, but in the interest of accuracy, I must correct this. The post-surgery pathology report indicated that it was actually a Gliabolastoma or GBM for short. Don't google that shit. Seriously. Or if you do, don't tell me what it says because it's not good.  All I need to know is: GBM = not good. (Not to be confused with a GSM*, which is actually quite tasty.)

Oh, in case you haven't figured it out yet, if you don't like dark humor, you should probably just stop reading this blog right now.

One of the things that Steven and I have started saying to each other when discussing "real life problems" - finances, scheduling, etc. is: "Hey, at least it's not brain cancer!" I think it's quite catchy. Sort of like Urkel's "Did I do that?" I'm thinking of having t-shirts made up. Or possibly a whole line of products - coffee mugs, fedoras, and mouse pads...but does anyone really use mouse pads anymore? I will have to do more research on that one.

This morning, I had an appointment at the radiologist for a CAT scan so the team (radiologist and physicists) can start planning my radiation treatments. I was told at a previous appointment that they were going to need to make a custom mask for that, but I had not processed that this was going to happen at the same time as my CAT scan. Maybe it was better that I didn't know? I saved myself some needless anxiety in the hours leading up to it?

So, let me give you a little background information to help set the stage for you: 1) I'm claustrophobic. (I needed to have atavan to make it through the MRI's in the hospital and 2) The mask resembles a medieval torture device.

This is how it went - The very, very nice man in radiation got me all situated on the CAT scan table and proceeded to tell me how he was going to heat up the very rigid plastic mesh thingy and then put it on my face. It would be "hot" but not painful. I was to breathe through my nose because my mouth would be covered. Really all of my face would covered. In it softened state, the mask would be pressed and prodded to be form fitting along every contour of my face, ears, etc. I would have my arms rest along my side or hold onto a foam ring thingy if that was more comfortable. (Yes, please! Somehow getting to actually hold something in my hands sounded like it was more grounding.)

Once the mask was formed and cooled, what I then realized was that I would be wearing the mask throughout the rest of the procedure - CAT scans without and with contrast!! Wha'!?!?! Did I mention that the mask is locked into the table so I can't move my head at all?

I struggled to keep my shit together because I knew that if I lost it this time, it would just mean doing it over again. This was a non-negotiable part of my treatment. I focused on breathing deeply, in and out, through my nose. I tried to help my brain (no pun intended) go to another place. This was all about doing whatever I have to do to get rid of the fucking cancer. Keep it together, keep it together, keep it together...

And then I started to visualize April & Coffey's little bean in my arms. Autumn Elizabeth. Pictured her sweet, little face and fuzzy newborn head cupped in my hands instead of the foam ring I held. I am doing this for Autumn. I have to do this in order to hold my sweet baby granddaughter in 4-1/2 months. A stillness came over me, and every breath was just for Autumn.

After the CAT scans were done, the radiation technologist paged the doctor to look over the film and make sure he had what he needed. If not, we would have to repeat the scans. I was soooooo relieved when he came back and told me we were good. Just a few more minutes for him to draw dots on the mask to mark the points of radiation, and I was finally free of the mask and the table.

All told, I think I spent close to an hour in the mask, locked to the table. The good news is that the radiation treatments will only be 10 - 12 minutes. Now that I have my super-power, I know I can make through.
Rawwwr!!!


*GSM = Grenache - Syrah - Mourvedre blend

The Voice of a Warrior

By June Mirassou — Oct 8, 2014 7:24am

I have my second speech therapy appointment today.  The first was last week - about 5 days after my surgery - and it didn't go so well. There were two people there - the speech therapist and a student from SJSU. Normally, I would be all for supporting the educational program. I got my teaching certificate from San Jose myself, and I completely support the student teaching/mentor experience! But it seemed inappropriate at the time. I was still so emotionally raw from the previous week's experience...Not to mention the fact that I was physically healing and still struggling with about 4 seizures a day, which was sapping my strength and fucking with my mind in a major way. And yet, these two young women just seemed to be clueless about my condition and were plugging away, administering their baseline assessments, pushing me to the point of frustration again and again. Needless to say, I broke down crying a couple of times within the 50 min. appointment and really had a good sobfest once it was over.

So, I'm super excited to be returning today!

(I hope that my extreme sarcasm reads adequately on the screen?)

And yet, of course, I WANT all the speech therapy that I can get. Now that my seizures have calmed down, my speech is probably the most outwardly noticeable evidence of my condition. (If I comb my hair the right way, you can't even see the gnarly staples and stitches on the side of my head.) Every day, it seems like my speech is getting a little bit better, but it's still jumbled and slow.

The closest analogy I can think of is when I went to Aix-en-Provence, France to study for a semester in my junior year of college. I knew exactly what I wanted to say in English, but my brain/mouth/tongue didn't always cooperate to get it out the way I imagined in my head. And the result was that I sometimes felt like my true feelings/personality/meaning didn't always translate.

The brain is a weird, weird thing. I've often said that if I didn't go into teaching, I would want to have studied neuroscience. It's fascinating. in the abstract. But when it's MY brain, it sort of pisses me off. What the hell? It's not so hard. I think of something I want to say and you just ...make it happen by sending signals to my mouth to form the words and voila! Only, as it turns out, it's not that simple.

Don't get me wrong. I'm not complaining. I CAN speak - and the night before I was going in for surgery, we didn't know exactly what the outcome was going to be. There was a chance that I was going to have significant weakness on my whole left side of my body. So far, so good, as far as that's concerned.

I'll just keep plugging away, and hopefully, little by little, my brain and mouth will get more simpatico. In the meantime, please be patient with me. Try not to finish my sentences for me, although I'm sure it's very tempting. Trust me that I'm going to eventually get it right. Because, although it might not sound like it right now -  this is the voice of WARRIOR! RAwwwwr!

Yesterday was a Great Day!

By June Mirassou — Oct 6, 2014 7:41am
Yesterday, Steven and I returned to the winery for the first time since my prognosis. He was dreading it - only because he knew he would have a hard time holding it together in front of his Winery Family. Anyone who knows Steven knows that he is a crybaby in general - sorry, babe, but it's true! Lately both of us find our tears and emotions are just beneath surface, ready to well up at the slightest provocation.

But, as he said, he had to "break the seal". We drove up together and first stopped off next door, where the magic happens. Craig Ploof, assistant winemaker AKA Superman, has taken on the herculean task of managing the harvest in Steven's absence. There are no words to express our gratitude for all that he has done to enable Steven to be with me during the past two weeks. They tasted through bins and talked about the progress of the 2014 vintage...and I know Steven was in his element, able to forget for a minute the crap that we have been dealing with day-in, day-out lately. Then hugs and tears with Craig and his lovely Sagit. Oh, here we go... I was so touched by all the many people at the Wente facility who reached out to express their love and concern, and to offer to help us in any way. This is truly a "Winery Family".

Then, we stopped by the winery, where they were just getting ready to open the tasting room. More hugs and tears with more Winery Family members. How can we ever thank them enough for "holding down the fort" in Steven's absence? And yet they continue to ask if there's anything they can do to help us? They are already doing so much!

I still tire easily, and the anti-seizure meds contribute to that fatigue as well, so we headed home. Oldest daughter, April, was there to greet us. What a nice treat! And despite not feeling well, she rallied and mopped the floor, went for a walk with us, and just hung out. I took a little nap, and Steven and I watched a few episodes of "The Mind of a Chef", season 2 (my latest Netflix binge-watching obsession!). A typical lazy Sunday afternoon with family.

Later, Aidan, Sara, Matt, and Coffey joined us for dinner out on the patio with Springsteen blaring out the window and a lively discussion over Spaghetti with 'Augmented Sauce" a la Steven. (Seriously. He called it "augmented". Lit. majors!)

So, that's it. That's what made it a great day: hugs, and tears, and friends, and family, and Springsteen. A pretty simple recipe. I plan to repeat it as much as possible in the coming weeks! Katherine's coming home this weekend!!! Yay!!!

Love Fills Me Up!

By June Mirassou — Oct 3, 2014 11:06am

 

  I had the best post-surgery day yesterday. I only had three mild seizures during the day - one was so slight, Steven didn't even notice it was going on until I told him. What a positive change! I smiled and laughed and felt almost "normal" for brief moments in the day.

I have been in the pattern of going to bed after taking my 8 p.m. medications, but that leads to waking up in the early, early morning. I decided to try to stay up until 9 p.m. to see if it would lead to a more "normal" sleeping pattern. It was an effort, and I was so tired when I went to bed...but...unfortunately, I woke up at 2:00 a.m. anyway.

That is the worst part of the day for me. In the dark, wide awake, thinking about what might be in my future. The unspeakable fears - how long do I have left? Tears drop, but I try not to shake the bed too much and wake Steven up. This is the only rest he gets from the unrelenting worry and stress.

So, as I was lying there in bed, I had a little talk with myself. Knock it off! It does no good to focus on the fear. Whatever comes will come, regardless. Maybe it was the cheesiness of the movie "Frozen" seeping into my subconscious, but I made a determination that I'm going to spend as much time as I can focused on feeling LOVE - the deep, powerful love I have for my husband and my children and family and friends - and try to be so full up with that love that there is no room for fear.

Of course, it is natural to feel scared. And I'm not going to pretend it isn't happening. But when I feel it creeping in, I need to redirect my thoughts.

"SQUIRREL!!!"

So, basically, you are all my squirrels? Or something like that...

My Northern Star

By June Mirassou — Sep 29, 2014 5:36pm

Last Monday, I was teaching children - all day. Working in my classroom, as an intervention specialist. And I was worried. Because I had had two seizures in the past month, and although I was on anti-seizure medication, I was concerned that I might have a seizure in front of the children. I was also struggling to wrap my head around my new reality. How would my life change if I were officially diagnosed with a seizure disorder?


Tuesday, I woke up early. It's harvest time, and Steven was routinely leaving at about 4 a.m. He gave me a kiss and told me to go back to sleep, but eventually the thoughts of work compelled to get up. I poured a cup of coffee and sat at the dining room table at me computer, planning what I had to do to meet the needs of my students. About 7:00 a.m. I decided to get ready for work. I fed the dogs and the kitty and was just brushing my teeth when I felt another seizure coming on.


Everyone at the hospital kept asking if I felt an "aura" before the seizures started. I don't understand the aura terminology. An aura sounds mystical and gentle and innocuous. No, I don't feel an "aura". Do I know when they're starting? Yes.


But seizures are fucking scary. And I've grown to hate the impending feeling, the loss of control. The "yea, here it comes, and I can't do jack-shit to avoid or stop it" feeling.


Tuesday, after the 3rd seizure, my daughter, Katherine drove me to the ER. No ambulance. No paramedics. It's amazing how quickly we adapt to our new conditions.


Tuesday, though, everything changed. After I had a full-blown seizure in the ER, they admitted me to the hospital and ordered an MRI ( I was scheduled to have one on October 6th as an outpatient).


Wednesday, they finally found the reason for my seizures - brain cancer. Perspective. Suddenly a "seizure disorder" doesn't sound so bad, right?


Brain surgery to resect the tumor. Pathology report. Lots of cry and shock and an overwhelming rally of support from family and friends. It's hard to take it all in.


Especially because I am still having these fucking seizures. I am serious meds to control the grand mal ones, but I am still healing from surgery. And apparently it can take time to figure out the medical cocktail that controls the "partial" ones.


Right now that's the main thing that I'm dealing with. 3-4 partial seizures a day. I don't know when they will come. And when I get that impending feeling, I just have to give myself over until it passes. It sucks.


Through it all, Steven as been there. By my side. Stroking my hair. Telling me to breathe through it. Talking to doctors. Keeping track of my ridiculous number of meds. Listening patiently while I try get my words out (the surgery left my verbal ability jumbled for now) and communicating for me when it's necessary. Encouraging me to get out and walk, but understanding when I need to just rest and watch a Harry Potter marathon (the later movies are soooo much better than the first few).


24 years ago, when I stood across the aisle from him and said our vows, did we ever think we would end up here now? Of course not. But I won the lottery that day. When it all doesn't make sense. When I'm utterly lost and scared, I feel him pulling my back. My Schmoopy. My Rock. My Northern Star.

Forgive me for my "deep thoughts" in my early morning reflection

By June Mirassou — Sep 27, 2014 8:40am

It was good to be home again and sleeping in my own bed. No nurses to wake me up incessantly -  to poke and prod and record endless data. I don't begrudge them that. The Good Samaritan staff was so caring and attentive, and I knew they were only doing their job. But there's nothing like lying next to my Schmoopy and hearing him breathe - the accidental brush against his leg or his arm. My love.

We will be strong most of the time. Most of the time. But sometimes we have to cry. And it seems like we've cried enough to cure the drought already. I'm sure there'll be many more tears. Funny. Most of tears come from the overwhelming gratitude for what I have in my life. The amazing outpouring of support from family and friends.

Anyone who knows me intimately, knows that I have rather unconventional "religious" beliefs. Raised in an atheistic/agnostic household, I was exposed to a smattering of organized religions. My mom's family is mostly Catholic - and I attended many masses in my childhood, usually when my grandmother was visiting. {I have also attended a Quaker meeting - which is really cool, if you've never been.} But I've always wrestled with the "'I'm right. You're wrong." aspect of organized religion. If Catholics think their dogma is 100% right, how do they account for the 1.6 billion muslims in the world who feel equally "right"? And vice versa? A quick search of google, and I see that 2.1 billion identify themselves as Christian - and that includes all Christian denominations... I could go on and on about the statistics, but that would muddy the point.

The point I'm trying to make is that because I was never indoctrinated into particular religion, I kind of came up with my own. And it goes something like this: Everyone has "good" inside of them. The love, joy, and wonder that makes the world a better place. And If we combine our own love/joy/wonder with other people's, it's even more powerful. In fact, I'd say, the sum total of "goodness" in every one of us is GOD. in all its/his/her glory. The flip side is that we all have evil, pettiness, greed, etc. within us. And if we allow that to take over our lives, then we waste so much time and energy.

So, in each day, we have choice. To tap into the goodness within us...or get sucked into the evil. I choose the goodness. And I feel the "goodness" in waves from all of my family and friends - in every FB message, every text, every card, every flower, every hug and kiss. I feel GOD touching me through YOU. And it's a beautiful, beautiful thing. Please know I that find such strength in you - you individually, and the collective YOU. And I might not always be strong enough or aware enough to personally acknowledge your love or support at any given moment. But I feel it. And it makes a difference.

So, yes, whatever you call them - prayers, thoughts, vibes...whatever! - keep them coming! Thank you. Thank you. Thank you. I love you!

well, ain't that a kick in the head

By June Mirassou — Sep 26, 2014 8:46am

Two days ago, I got a figurative kick in the head...although it seemed like a literal kick in a head...

I had thought that the things were bad enough with a sudden onset of unexpected seizures. Seizures suck, but the way. Traumatizing, horrifying...but not generally life threatening. So, when I had another - the third - Tuesday morning while I getting ready for work, I shaken up, frustrated...but not particularly scared. In fact, I had my daughter, Katherine, drive me hospital instead of calling 9-1-1 this time. We were quickly admitted to E.R. and Steven drove back down to San Jose by Livermore to meet my there.

By the time I had settled into an ER bed - dizzy, sick to my stomach...I was feeling no bueno, but the staff had its hands full with a heart attack in the next room over. I started feeling twitchy in my arms and legs and my face felt tight - tell-tale signs that I was in for another seizure. I signaled to Steven and started breathing deeply and rhythmically to keep myself calm. It seems to help - although my arms transformed into to stiff, useless appendages, and I felt the awful buzz of uncontrollable electric current  going through my body, I manage to avoid losing full control of my mouth, which inevitably results into a solid tongue biting.

It seemed like forever until the ER nurse was able to get some Ativan to calm my body, but as she injected it into the iV, the liquid washed over me and eventually the seizure subsided. Seizing right there in the ER seemed to get their attention in a new way, and I finally felt like I was going to get some answers!  An MRI later, and I had my answer alright: a brain tumor. <THWAP!>