The One in Which I Think I'm Having a Paddling Boarding Lesson

Have I ever told you the crazy story about my Spring Break 2013?

I'm not sure what came over me in 2013, but I decided to pack this week-long break with not just one, but TWO separate and crazy fun trips - on opposite ends of the U.S.!
1) I was invited by my parents to visit their condo in Maui with my daughter, Katherine.  (And you know the answer to that question is always, "YES!" Kiddies??? Right??? Have I taught you nothing?)

and

2)I had signed up to run the Disney Princess Half-Marathon in Disneyland with my sister the following weekend! Logistically, that meant I spent 4 days in Maui, that I flew home to San Jose, slept overnight, switched my bags up, and took off the next day for Orlando, Florida.

I KNOW! You don't have to tell me that it's crazy!  I lived it! But it was fun as hell! And I wouldn't have changed anything for the world. The Disney Half Marathon Adventure is going to have to wait for another time...I want to tell you a little story about our "Paddling Boarding" lessons on Maui...

I think Katherine and I were actually in Maui for 3 nights, 4 days - and we definitely sucked the marrow out of that experience: Boogie Boarding, Snorkeling, whale watching, Sunsets & Rainbows...

(Yes, my hair is red in this picture - I dyed because I was dressing as Merida from Brave for the half-marathon.)

Whale Watching and Boogie Boarding? Yes, please!

 But I want to tell you about our Paddle Boarding Lessons....

You see, I've always wanted to go paddle boarding, and Katherine was up for either paddle boarding or surfing lessons. Perfect! So, we booked a paddle boarding lesson online the night before and got up bright and early to get into Lahaina on time. "Todd", our instructor, suited us up with rash guards in the store and pointed casually to a video of people surfing that was running in a loop on their t.v. "See, I'll have you doing that in no time!!" Then he had us grab long boards and carry them across the street to the shoreline. "I like to use these long boards because I want you to really get up on those boards. Some people have a whole lesson and never even get up on the board. I guaruntee I'll get you up and surfing in no time."

Uh....it was suddenly really clear to me that he was under the impression that we were having SURFING lessons, not PADDLE BOARD lessons. This is the point where I had to make a decision. I knew Katherine wanted to learn to surf. And to turn this around now and switch Todd up...was it worth it? Or do I just go with the flow?

What do you think I did? Come on! You know me by now!

I had surfing lessons - for the first time! And Todd was right.
We practiced the moves on the sand first:

Kind of like this...

And then we went out in the water, and were able to pop up on those long boards and surf (almost) right away. We didn't pay for any pictures, so you'll have to imagine us there. Sorry!    Okay....HERE:

This is pretty much what adorable Katherine looked like surfing...

Here is about what I looked like...

See, we even have proof - we got certificates and hats and everything! I got an A+! hahaha!

 So...yada yada yada,,,

I bet you're thinking that this is one of the cute stories where you learn about how if you have an open mind and a free spirit, you can experience something unexpectedly wonderful...
and um...yes...that is true. But that's not why I've been thinking about this little story.

Lately, I feel like I've been taken on a journey that is way over my head...and to tell the truth, the last week or so, I've had a really, really hard time keeping my balance. I'm trying to stay calm and just float along the surface of the water, and I feel like I keep "falling off my board", so to speak, and being pummeled by waves.

I'm trying to imagine myself in control - standing on calm waters with a paddle to guide me -

But I can't seem to get it right. I want to say that I remain positive and calm and "in control", but that would be a lie. I've been doing a lot of panicking and crying this week. I'm trying to read what I can from other survivors who seem to have it all figured out. But the fact is that, in order to read this stories, I have to read probably 10x the number of people who haven't survived or who don't have a clue what they're doing...what's going to happen next...how they are going to deal with it...

And right now, I'm so very far from calm. I'm scared.

I hesitated to write this blog entry because so many people have come up to me and said how "inspiring" I am with my positive attitude through all this. And I thought I'd disappoint you. But I started writing this blog to be an authentic voice of someone living with brain cancer, and I want to keep it 100% real.

Right now, I kind of wish I had taken the paddle boarding lessons...but I hear it's pretty freakin' hard to stay upright on those suckers, too.

I'll keep working on it. Keep getting up when I lose my balance. Keep looking at the horizon. and Keep breathing  <in....and...out...in...and....out.> Because I'm sure "losing my shit" isn't in the Survival Manual.

I guess I just wanted you to know that Mother Fuckin' Brain Cancer Fighting Ninja Warriors get scared, too.

OH, and if you get invited to Maui, the answer is always, "YES!"

The One in Which I Just Try to Recognize that Life is Happening...NOW!

This was my day yesterday.  I've included some lessons along the way that I'm learning every day...just for you, kiddies!

MY MORNING
I woke up early this morning, and instead of writing for my blog, I wrote an email to my children. I had mentioned yesterday that I was working on a page about my Personal "Now What?" after my initial treatment is done. I will still post something eventually, but I felt like I should share that with them privately first, rather than on my blog. Especially because my "Now What" is all about them!  The Cliff Notes version: I am determined to live purposefully (PLAN) to make sure we spend as much time together as possible. And in those precious moments, just focus on that, and not worry about what may or may not get in the way of our plans down the road.  

Kiddies, here's been a huge lesson for me: We can (and should) PLAN for life, but we can't CONTROL it.

After a long stint on the laptop, I did my juicing routine. I juiced some crisp cucumber with some carrots, several leaves of spinach, a little ginger for a zing, and one small apple. It was surprisingly delicious, as the vegetable juicing combinations can be. Really!

Side note: Okay, kiddies! I was going to describe things as organic, but it got really repetitive. So, assume that everything I am eating is organic whenever possible from now on. That was one of the biggest take-aways from our first meeting with the UCSF neuro-oncologist in October. 

Another lesson I've learned: When it comes to cancer - and just your health in general -  eating organic is really important.
Once I was done, my brother made  juice with organic radishes and organic apples (see, doesn't it already sound repetitive?) The combo also was surprisingly good.  Go, figure!  I don't know if I've mentioned this before, but my older brother, John, is staying in town for a while. We were born only ~15 months apart, so we don't actually fit the definition of "Irish Twins", but we were pretty darn close.

Aren't we the cutest things? I'm not sure if he is making a peace sign or doing some dorky Star Trek thing, though...

John lives in Boston, MA with his lovely significant other, Condee, but they agreed that it was the right thing for him to come out here for a lengthy stay to be closer to me after my prognosis. Fortunately, he has the kind of job that he can do pretty much anywhere (as long as he has a landline - which is proving to be more challenging to find here in Silicon Valley than one would think). I am so grateful to him for having rearranged his life in order for this to happen and so grateful to Condee for being willing to accept his absence for a while.

I got to spend a lot of quality time with my older sister, too, the week after my surgery. Although I think I was a lot less perky then. Sorry, Sis! <smooches!> See you at Christmas time!!!

Spring 2013, Disney Princess Half Marathon with Seestor

I know not everyone has the ability to do this! Alert: This is a NO GUILT Zone!

 Kiddies, I'm just saying that there's something special about being together with someone so much that you lose that urge to fill every silence with words because you just don't feel like you have enough time to say everything you want to say.... and you are in ordinary situations when magical, spontaneous moments can happen. Bottom line:  Keep your family close to you if at all possible.

Oh, and just so you get this straight, I have no one to blame but myself for this situation. 22+ years ago, Steven and I moved 3,000 miles across the country, and it devastated my family. They tried to teach us that lesson long ago, but we didn't listen! (Darn kids!) I didn't really think my parents would ever forgive him for "moving me away" ...but I told him just yesterday that I think he's come a long way towards redemption as they've seen what a #ROCKSTAR he's been through this shit.

Speaking of the #rockstar AKA #baldhottie - It's been raining...I mean, like, REALLY raining here in San Jose (YAY!) , but Steven and I went out for our walk up Communications Hill anyway. I had gotten a brand new wool hat from amazon yesterday (with a  soft, silky interior - mmmmmm) to warm me up without irritating the bald, zappitied parts of my scalp. And Steven thoughtfully bought me some gloves at the store (awww!). We were toasty warm even despite the wind at the top. We talked about life, liberty, and pursuit of happiness - you know, the usual chit-chat!

Gratuitous picture of piggy in rain boots. (Don't be so serious all the time!)

Kiddies, I have already said that it is the daily connections that matter. These walks are the highlight of both our days. But here's a new lesson for you: You CAN walk/run in the rain if you have some good gear on. That's something we know instinctively as kids that somehow we forget when we get older. Humans don't melt!

By the time we had finished our walk, we had barely enough time to get ready for my radiation therapy appointment. I decided to make today's ninja star out of cheery colors (yellow & orange) to combat the gray skies:

It's a little messy because I was rushed and in the car, but between the things that I wrote in my email to my kids and the conversation I had with Steven, I knew the message I wanted to carry with me today:

BE PRESENT. LIFE IS HAPPENING RIGHT NOW!

I included the #planforit because I don't think that this is the same philosophy as just letting life "happen" around you. You plan to make it happen. But then shit happens and you need to adjust....And while it's all happening, be THERE, not thinking or looking for the next thing. Lamenting the fact that something "ruined your plans" ...Or worse yet, looking back and wasting time wishing you had paid more attention in the past. <--- Okay, that was stream-of-conciousness version, but I think that there's a theorem in there somewhere:

PLANS + SHIT = LIFE

 DEAL WITH IT + APPRECIATE WHAT YOU HAVE

That's a rough sketch, but I want credit when some genius solves the whole thing. This could be some Good Will Hunting kind of shit.

MY AFTERNOON

After my treatment, Steven and I went for lunch at a little Italian place. The pizza oven warmed the restaurant and created a perfect atmosphere to combat the rain. And - I kid you not -  a rainbow did appeared in the sky as we were walking back to the car. I'm not making this up. (Now, if I had said there was a cat riding a unicorn, I can understand how it would have sounded suspicious.) I thought about taking a picture of it, and then I decided, "No. I want to really SEE it. RIGHT NOW."

Another lesson for you kiddies: Look up and around. There are fleeting beautiful things that you will miss if you are always looking down. And you don't have to Snapchat or Instagram it all. (P.S. I'm not being a hater. You know I love me some social media!)

The rest of the day for me was spent under my Chemo Project Blanket (Love!), watching a few good movies with my brother and Steven. I got a surprise visit from a former coworker/friend, Irene. Unexpected extra hugs and gifts! Bonus love!!! Xoxoxo!

The object to the right is a "Dammit Doll". Irene said she wanted to get me a "Fuck It" doll, but they didn't have one. Haha!

EVENING

 I skipped my daily nap (which hardly ever happens these days!) because I was enjoying my rainy afternoon so much. So, my evening was short. But Steven made this simple meal of chicken and green beans (organic stuff  - DUH! - that John bought at Whole Foods). It was yummy! Did you know that organic chicken from WF actually tastes like CHICKEN?!  And we sat around the dining room table and "broke bread" together with Aidan. Until I went to bed at the late, late hour of 8:00 p.m.

This last lesson goes out to all of you that have someone in your life that is dealing with any serious illness: I know you feel helpless and that there is "nothing you can do". and it feels that way because, let's face it, what we all really want to do is give them their health back. and it sucks that we can't.

But what you can do is be one of the "small-ish" things in their day that make them smile, or laugh, or cry, or look with a sense of wonder. (If you can't be there in person - a card, a message on Facebook or Twitter, a text...it all makes a difference.) 

And if you are one of the people like me, who currently has a serious, shitty illness: 

Try, try, try to spend as much of your day as you can

Being Present 

and 

Realizing that LIFE is happening all around you...

including IN YOU.

So, kiddies, there you have it:

Open your arms, and let it in. This is LIFE! Right here. Right now.

Ninja Warrior Power - Activate!

I've talked a little about my radiation treatment - first with the Who Is the Masked Women post, in which I described what it was like to get fitted for my Mask of Horror AKA Radiation mask. I further announced my actual start of treatment with Hear ye! Hear Ye! The Radiation and Chemotherapy Doth Commence!

But after a week of treatment, I'm starting to settle in and figure out how it all works.

First of all, when they call you to the radiology room, they make you say aloud (to confirm):
1)  your name,
2) birthdate, and
3) "what they are treating"
And it's all right on the screen in front of you. So, I basically have given you the secret pass if you ever want to slip in and have some radiology treatment done. it's kind of like a spa treatment. That's what the nurse said to me before I started. (Helpful tip:  Unlike me, that nurse is a pathological liar.) Hey, but whatever floats your boat. You now have the keys to the castle if you are interested.

I have no problem with the name and birth-date thingy, but I have stumbled with the "what are they treating" question.  Is it the head? Or the brain? Or the mother fucking cancer cells? Or "cranium-threatening bastard thugs" inside my head/brain? The radiology technicians never seem as amused as me at my attempts to be accurate. To their credit, they play along nicely, though.

And they are very tolerant of my music choices. You see, we're allowed to bring our own music to stream into the room. Only it's not very private because headphones would definitely not compatible with the whole zappity-zapping radiology thing going on around my had. So, it's piped in from a playlist on my phone.

I get the distinct impression that my music choices are not the "norm" for them. I guess a lot of people prefer zen-like, peaceful stuff that makes me think of people in expensive yoga clothes and who smell like patchouli oil (not that there's anything wrong with that....) Or very sweet, elderly ladies who probably request classical or Sinatra or something.

I will say that I am very considerate and download the "clean" versions of songs as much as possible.
But what feels right to me is to fight. with every ounce of my being. Dig down deep and channel my inner Ninja Warrior. And my Ninja Warrior is not thinking about waterfalls and lollypops and rainbows or ring-a-ding-ding! My Ninja Warrior is thinking about fucking some shit up.

No, that's not exactly right. My Ninja Warrior is not thinking about hate, but POWER. I want to feel the power - MY POWER -coursing through my veins from the tip of the toes to my curly topped head. My Ninja Warrior is saying "Raaawwwwrrr, Mother Fucker!!!" not "meow."

Today, for some reason, I was thinking about how I've been a Ninja Warrior all along. There were signs early on.So, today I used music to call on my Ninja Warrior spirit from days gone by...

Today, I was channeling that girl that got <eh hem> "detained" by the police for painting "U.S Out of El Salvador" on the High School wall...in weather-beater paint, no less.

(If you don't know what I'm talking about, kiddies, need I say it? Google that shit.)

Today, I was channeling the girl who cut her own hair in college and double pierced her own ear...

Who woke up sweaty and bruised from a night of diving into a mosh pit at a punk club....

I was channeling the girl who went to a freshman dorm "Kink or Pink" Party (where all the girls dressed in cute pink outfits - DUH) dressed in a black dance unitard and carrying a bent hanger.

[Sorry! No pictures of that one!]

But Bonus Side Note: I believe that was the first time Steven walked me back to my dorm room and attempted to kiss me. But I closed the door in his face. Imagine how the story would have been different if I hadn't? It's definitely some Butterfly Effect kind of shit, no?

Today, I was channeling the raw, undeniable power of Young June/The Outlier, who has always been a Mother Fucking Ninja Warrior!  And today this Ninja Warrior needed powerful music.

I came up with a whole playlist, but for some reason, this song captured the spirit of the day. It's not what they are saying, but the essence.  Today, I didn't want peace. I wanted to feel power. Drop to your knees kind of POWER.

Warning: Absolutely No Unicorns or Rainbows Contained in this Post (sort of)

I made a mistake last night. I "googled that shit". Specifically, I googled "brain cancer blogs" because I wanted to hear from other people  who were going though the same thing as me. Many scrolls and clicks later, Steven found me in the bedroom, tears streaming down my face.

Steven: "Are you okay?"

June: barely audible "No."

Isn't there a saying about people who don't follow their own advice? I would google that shit but it doesn't seem important right now, and I'm sad.

I was careful to only click on the google leads that sounded hopeful - that didn't seem like they were about statistics and medical crap and survival rates.  But the number of blogs that stopped abruptly because the writer was silenced.... And the number of blogs that had one last entry, written by a spouse or a sister or mother or father...

Telling us how wonderful these people had been...how brave they had been...how creative they had been...how admirable they been...

I was reading about people who were in the past tense.

I didn't read long.

I just closed my laptop...

and I cried.

and I fell asleep so I could stop thinking about it a little while.

But then I woke up, and I'm crying again.

I'm sorry that this blog doesn't offer any pithy, smartalecky jokes...or a picture of a cat riding a unicorn with a rainbow in the background.

But I promise that I will always be real. And this is what real feels like to me right now.

And I promise to never, EVER google that shit again.

Love, June OUTLIER Fremer Mirassou, MFBCFNW
Xoxoxo

P.S. Ninja Warriors can cry sometimes, and they don't get their certificate revoked, right?

P.P.S. And IF there should come a day when someone else has to write that one last entry for me, there better be a fucking cat riding a unicorn with a rainbow in the background. You hear me?!

P. P.P.S. But this is NOT that day, Mother Fuckers!!!

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.