The One in Which I Talk About the "Wait and Live" Phase

In case you don't follow me on Facebook, I'll start this post by giving you an update. I just took my last chemo pills last night after 12 cycles. Those were preceded by what I call the "30-day Initial Treatment": chemo 7 days a week and radiation 5 days a week. The 12 monthly cycles were 23 days "off" and 5 days "on" (chemo). It's been a long road. I lost most of my hair and 70 pounds. (See, being fat before this all started actually was a benefit. Who'd a thunk?)  I had 70 pounds to lose and ended up scraping the bottom of the "healthy" scale for my BMI considering my height. I have worked hard lately to stabilize my weight so I don't go into the "danger zone" of underweight. My body needs those calories. I just try to make sure they're nutritious calories and not crap. <--which I should have done all along, but that's a horse of different color -- kind of like my hair!

2013 Alaskan Cruise (left) - 2015 Thanksgiving (right)

I'm sure I have lost a lot of muscle mass, too, not just fat. But I've tried my hardest to exercise every day - walking and more recently incorporating yoga, too. (Dang! Yoga can be a serious muscle workout, but it feels so good!) We have an erg or rowing machine in the house now, and I plan to get some workouts on that when El Nino really gets going here.

From the beginning, every doctor we saw said that this was the best thing that I could do to help myself. EXERCISE/ACTIVITY/MOVEMENT. Of course, I try to listen to my body every day and be sensible. Sometimes the body just needs rest to help it heal. (Naps are good, too! No, really, really good. Trust me on this one, Kiddies!)

Another thing I have been doing is focusing on the positive. Lifting up my arms in acceptance - -  and being so grateful for people who have supported me with love and positive energy and prayers. I believe that helps me continue to have the stamina to push through every day and live life. I can't say THANK YOU enough. Meditation also helps me focus on the positive, healing energy and keeps my mental state on the positive side.

In the first month or two, I sought advice and fellowship online from people that were in the same situation as me. I read blogs from other Warriors with GBM, and actually bought a t-shirt from one that spoke to me at the time. I've worn it several times and featured it here on this blog, too, I think. It says, "Fear is fake. Live Now."

Source: http://www.ryansepicbattle.com/shop/

When I wore it, many people commented on it, positively. But now, 1)It's way too big for me, and 2) Steven and I discussed this recently, and I no longer agree exactly with this message. Fear is really not fake. Fear is a natural and reasonable response to my situation. I am human. I feel fear at times. We all do. Human beings are programmed to feel fear to avoid dangerous situations - you know, the whole "fight or flight" thing? Since I can not flee from my brain cancer, I have to fight it. Like a Ninja Warrior. What I think the real message is that we should try not to focus on our fear.

At my last meeting with my oncologist before I started this last chemo cycle, there was definitely a different "vibe" in the room. I had made it a year. More than a year. That's definitely something to acknowledge and celebrate. I'm entering "Outlier" territory, my peeps! Woot! 

My Outlier cookie, provided by Charrisse Min Johnston. If you want to see the whole awesome collection: click HERE

But I also shared with him, as I'll admit to you now, that I have begun to have a lot anxiety at times. Being in the "Wait and Watch" phase instead of being in an active treatment regimen. Well, let's put it this way, the doctors have stepped back, and I'm free to "do me". Which I will: continue with meditation, exercise, nutrition, rest... and LIVE. Not just wait and watch, but Wait and LIVE.

My doctor said something that really stunned me and caused a paradigm shift of sorts for me. Anyone that knows me well, knows that I often say, "What do you want the outcome to be?" when they ask for advice about what to do/say in a situation. And I make decisions in my own life with that in mind. So, I tossed off one of my mantras, "Worrying won't change the outcome." And the oncologist looked  me square in the eyes and said, "Or...worrying could change the outcome..." <deep pause> In other words, in this particular case, worrying is actually counter-productive when you're in a situation where you hoping for a positive outcome of a healthy body. Worrying, stress, negativity are all actually, scientifically proven to be toxic to our bodies. Google that Shit. It's the truth! (Kiddies who are struggling with depression, anxiety, stress...go back and read that last bit. And think about how you're living your life right now. What are some things that you could do to change it?)

Most of you have figured this out by reading my blog already. It's about how you live your life NOW, so I like that part of that old t-shirt message.  So, in fact, I've made a new t-shirt for myself that I can't wait until it arrives in a couple weeks! It says, 

"Find the Fun! Live Life Now!" 

I think that encapsulates more of what I believe and.... the message I wish everyone could feel deep down inside (without having a life-threatening illness). I think needing to have brain cancer to get there seems a little over-the-top, don't you?

Stay tuned for a picture coming soon of me in my new t-shirt! 

but there's always room for a gratuitous picture of my granddaughter, Autumn, right?

Just turned 10 months old yesterday (double digits!), and she's already a foodie!

Love, June Xoxoxo #mfbcfninjawarrior

The One in Which I Talk About Goal Setting While I (MIGHT BE) Living with Cancer

This is the time of year when everyone begins to reflect on what they've accomplished so far, and what they want to accomplish in the next year. This has been a tricky thing for me, this year, as I factor in the idea that I might be living with cancer.

Forgive me. I need to interrupt here for a hot second...

Before I launch into this topic, I just have to make this clear to everyone. Some of you get it. Some of you don't. So, I have to lay it all out there. I might be living with cancer.  Yes, even after the treatments I've gone through. If you want to know more of the specifics of what that means to me/us, click on the page "Living with GBM and My Medically Now What?" Regardless of whether I am looking at a recurrence in my future, I am forever changed, physically and mentally (literally). I felt like I needed to get that out of the way because it's been increasingly obvious to me that some of you think that I'm on the road to recovery, and when I'm done, I'll be a "survivor" going about my Old Normal June ways...Old Normal is gone. Forever. My family and I are still working through what that means to us. But we are acknowledging, accepting, and adjusting to this new reality.

Now that we're all on the same page... Let's proceed...

Goal Setting While I MIGHT BE Living with Cancer:
My New Reality is trying to balance my desire to control what I can in my life while accepting that My Grand Plans could go Ka-Blooey! in a heart beat based on what my medical team says from month-to-month. And it's a very uncomfortable place for me these days.

I've been a goal setter for a long time...A serious goal setter for about 20 years. That's when I discovered Stephen Covey and his book, "First Things First" -- It's all about consciously focusing on what matters most in your life and making sure your life reflects that. That doesn't mean that I/we always succeed in that, but it is all about intention and focus.

[If you haven't heard of Covey's work, I highly recommend you do some research of your own. There are lots of resources online to get you started - and he has several books out if you are into that sort of thing. This is the perfect time to do it, too, when everyone is motivated to make changes in the New Year. Damn. I wish I could get a little commission on that...but let's just call it "Paying it Forward" and move on, shall we? ]

At the core of it all is that you are deliberately looking at your life and the various "roles" you play, intentionally identifying what you want to BE/ACCOMPLISH in this area of your life, and then setting up a plan to make it happen through Goal Setting.

Goals should be SMART:

Specific

Measurable

Attainable

Realistic

Timely

Some of you are rolling your eyes at me right now. I see you! (You didn't know that Ninja Warriors have the superpower to see through your computer screen? Silly, silly you!) No, you're right. The concept has been around a long, long time. Kiddies, just because something is old/not new doesn't mean it's not valuable. Look at Beanie Babies and Pokemon cards. Okay, maybe not good examples...

A BETTER EXAMPLE...

(History Geek Alert!!) The origins of  Benjamin Franklin's the Art of Virtue: His Formula for Successful Living dates back to an idea he had in 1726, at age 20! He took a different approach - identifying 13 "virtues" or life principles that he felt were essential.. Each week, he would focus on one of them until he completed the cycle, and then he'd start over again.
I don't know if it's a true story, but I have heard it said that he had a hard time with #13 - Humility - after going through the first 12 virtues successfully. Which is pretty damn funny, considering what we know about Franklin and his ...eh hem...shall we say "weaknesses" as far as Temperance, Chastity, and Moderation go.... Who knows? Maybe he only focused on one a week, so that left him with a clear conscience the other weeks to engage in debauchery to his heart's content? Whatever the truth, overall, he was a pretty accomplished guy, so he was on to something, I think...

Sorry, my history geek self has gone completely amuck...#Freepass!

What I am getting at is ....
Things are different for me right now as a Planner/Goal Setter who might be living with cancer. But should they be? That's what I'm struggling with right now.

What's got me all twisted up? I can certainly make my goals SPECIFIC and MEASURABLE. The tricky part is...are they ATTAINABLE and/or REALISTIC? I'm talking about not knowing the New Normal June - which I'm guessing is going to be changing over time, too - and not knowing what is attainable/realistic for HER. errrr...ME! (What the heck? When did I morph into Elmo and start talking about myself in the third person???)

EXHIBIT A:
I registered to complete a half-marathon in Livermore on March 28, 2015  - way back in the summer 2014. Notice I said, "COMPLETE". I can hear some of my long-time runner friends saying...
Them: "Complete? You mean, RUN, right?"
ME: Uh...NO, I don't mean run. I mean, just cross the finish line after covering 13.1 miles on foot.
Them: But you've run three full marathons and several half-marathons already. You're worried about finishing a half?
ME: Ummm...YEA.

The problem is...I have NO IDEA if this realistic for me - in this next stage of my New Normal- undergoing continuing treatment which includes monthly chemo cycles. And, go figure, there are not a lot of resources out there one way of the other from other people going through the same thing. Trust me. There isn't a Half-Marathon Training Plan for Post-Brain Surgery/Radiation/Chemo Cancer Patients out there...

This is where I enter the confusing territory of...Am I just plain stubborn and/crazy? (uh. maybe you shouldn't answer that one...)  But just so you don't jump to the conclusion that I am completely crazy - Steven and I have been walking nearly every day (2-3 miles) - including The Hill - during my whole course my treatment, and I'm envisioning just adding on 1 mile a week to one of the weekend walks ...Seems pretty do-able to me...but the hell do I know?

How far does one push the envelope to see what we are capable of doing before we've gone too far?  I don't want to limit myself and stop taking chances. But I also want to LIVE as long as I possible can, and that MAY mean accepting that some goals are counter-productive in that respect.
Of course, Steven and I have discussed this issue. The logical first step is to talk to my medical team about the REALISTIC and ATTAINABLE part with them. But given the lack of data I see online, I wonder just how much they really know. And then there's the issue of there being just ONE June "Outlier" AKA #MFBCFNW, which is a very shallow statistical data pool indeed.

I'm not even going to get into the TIMELY thing...TIME SPECIFIC?  That's a "whole 'nother can of worms", as they say... Why do they say that? Google that shit, my friend... Imagine the poor English Language Learners that come to America and try to understand the convoluted, mishmash of nonsense that comes out of our mouths sometimes?

Speaking of which, I'm afraid this particular blog post is about as clear as mud...and I apologize. But that is where I am right now in my journey. I feel like the security of knowing what was going to happen each day during the initial treatment kept me tethered and safe to some degree. This wait-and-see crap just isn't my bag, Baby. But more and more, I'm beginning to realize that it is part of the New Normal June's Life.  Sometimes I feel like Sandra Bullock in Gravity - scared out of my wits and floating in space.

Wouldn't it be nice if it ended for me just like her? Landing on some soft sand with an ass of a 20 year old? A girl dream, can't she?

The One in Which I Reveal that George Washington was a MF Ninja Warrior

I woke up this morning, in bed with my arms around my Schmoopy, to the sound of rain drops falling softly against the window. And I was immediately transported back to a memory of laying in a pop-up camper with my family and hearing the rain drops plop on the canvas sides and the breath of my siblings beside me and my parents across the way. And it was so vivid.

I don't have a picture of our actual camper.I 'm sure my mom has many. I don't remember us having propane underneath. Other than that, it seems pretty accurate.

It's weird how the brain retains things, and how they are retrieved instantly from a smell or a taste or sound. Let's face it. The brain is weird. Magical. Powerful. Mysterious. and Weird. Which I guess is my round-about apology for this rambling post...

Today's radiation/chemo will mark the halfway mark of my current treatment regimen. I've learned a lot lessons from fellow Ninja Warriors out there that have seen battles with cancer, but one of the wisest is: Your journey is your own journey. Sounds simple, but it has given me a great deal of perspective after I first attempted to google"GBM" and got all freaked out.  Remember that? (Warning: Absolutely No Unicorns or Rainbows Contained in this Post (sort of)
Thank you to all the Ninja Warriors that helped through that particular hissy fit difficult time.

When I first got my prognosis, another wise Ninja Warrior (Bethany McIvor!) suggested that we google "GMB Survivors". I wasn't ready then, but I am now. Remember, kiddies, how I said we're all on our journeys? But this is a great lesson in how important keywords are when searching the internet.  Entering the keyword "tea party" will yield you VERY different results than entering in "tea party food ideas". These things are important to know because it would be very shocking and disappointing  for some Tea Party lobbyist to arrive at this:

Hint: Sometimes things end up in my blog just because they make me giggle to think about them. Giggling is a good thing.

P.S. I have lots of other lessons about google, but I'll save them for later...unless I get that inevitable communication from their lawyers.

So, I took a deep breath and googled that shit yesterday: "GBM Survivors". And yes, it contained (some) of the information that I was avoiding: The survival rate for GBM is... <June sticks pointer fingers in her ears> "La la la la...not listening!" But this time, I sucked it up and looked at the actual numbers. I already KNEW them, kinda-sorta. It just confirmed the whole Outlier thingy I've talked about it. That wasn't what I was looking for anyway. I was looking for WHO survived and WHAT they are doing.

I know that there are no secret recipes or cures, especially for the particularly nasty variety of Cranium-Threatening Bastard Thugs that are in my brain.... I realize that "cranium" isn't really the right word, but I can't think of a really good synonym for brain?" Oh! I know!!! How 'bout "gray matter"?

Okay, so henceforth, I do decree that they (the fucking tumor cells in my brain) will be referred to as Gray-Matter Threatening Bastard Thugs!  I'll just call them Bastard Thugs for short. But y'all will know what I'm talking about now, k?

Ninja Warrior attacking actual Bastard Thugs (GBM cells) with ninja stars! Fuckin' Awesome, right?!

Anyway, this is some of what I took away from my initial search for Stage 4 GBM Survivors is:
1) They exist! Yay! They're not unicorns! (Whoops! Sorry, kiddies! Ignore that last part.)
2) There are Mother Fuckin' Brain Cancer Fighting Ninja Warriors who are Long Term Survivors (LTS)!
Check this LTS ninja out: Cheryl Broyles's Inspirational GBM Brain Tumor Survivor Story
3) Knowledge is power. If I want to be a Long Term Survivor, I have to ACT like one.
Anyone who knows me knows this: I'm not quitter. I'm going to research and train and use my body, soul, and mind in this fight.

Sorry to break the news to you all, but this was a big a-ha for me (But remember what I said, kiddies: knowledge is power!):

4) This is only the first battle. This is an all-out war, and there will be more battles. There will be more treatment cycles and more battle scars.

The Good News: We don't have to think about them today. We don't even know what they are! What a waste of time and energy - and I can't afford to waste either of these things.

Because I'm a history geek, a thought that keeps running through my head are stories my father sometimes tells (fellow history geek! fist bump!) about George Washington during the Revolution War. Did you know that he lost more battles than he won in the war? And he had many close calls that could have ended his life.  (You'll have to ask my dad for the specifics. He's much better at telling those stories!) But it's obvious that George Washington was a Ninja Warrior, too!

Google truly failed me this time. The best I could to was a GW vs. Zombies pic.Which is also pretty bitchin'!

Although I couldn't find confirmation of it on the internet, I'm pretty sure GW's battle cry at Yorktown was, "Die, you Mother Fuckin' Bastard Thugs"

P.S. Did you know that I went to George Washington University, and I lived in Washington Crossing, Pennsylvania for a time in my life?

Coincidence, or something more?

The Kick-Ass Ninja Adventures of June/The Outlier

So, if you did the math yesterday, I guess you figured out that even with the juice making and the cleaning of the juicer, and the pill taking, and the doctors' appointment, I find myself with some time on my hands.

In my Ninja Warrior Power Corner, I have ever expanding collection of lovely things that people have sent me to cheer me up and give me courage and hope. And what is June's natural reaction to this? To make a play out of it! DUH! (picture Mickey Rooney saying, "Hey, let's put on a show!")

I've been fleshing out an idea that I think could be really sensational. This is just what is called in the biz a "treatment". (I'm lying. I have no idea if that's what it's called. It just sounded good. I warned you that I was pathologically honest.)

The Kick-Ass Ninja Adventures of June/The Outlier
June was an unassuming girl - no one knew about her super powers (except for the one about being able to drink large quantities of wine). She mostly went about her day, looking for the beauty in the world and in people.

Only she rarely  wore dresses. This picture is not a usual representation of her. In fact, on her First grade report card, her teacher said something like, "Lovely girl. If only she wore more dresses." (True story. Or at least as far as I can remember it. Either way, I think that teacher would have her ass sued in today's litigious climate.)

Until one day...she came upon a potentially tragic situation in which she was compelled to reveal her secret identity...

You see, she kept all her most treasured items in this blingy box, deep in the dark, where she thought it was well-protected with a hard shell. (She called it a "cranium" for some reason. Crazy kid.)

 

The box may seem to contain ordinary things for the average person, but everything there was precious to her. She opened the box daily and would appreciate all the unique things that she had in there. She couldn't imagine life without it.

So, she was forced to reveal her alter ego and her superpowers:

 Yes, you see, June was actually a Ninja Warrior who went by the name of The Outlier. All she had to do was ring the bell and BAM! ZAP! POW! She would turn into The Outlier in a snap!

Sometimes she doubted her ability, because she really had never had occasion to use it before...

but then she could look into her magic mirror, and it would always tell her the truth:

June knew it was time to ring that bell and summon The Outlier and go ninja on anyone ass who was threatening her blingy box.  Fortunately, The Outlier had some weapons at her disposal...

First of all, she had these awesome Ninja stars!!!! Take that, you cranium-threatening bastard thugs! (And in a convenient, camo case!)

And she had a team! 

(all good Super Heros do!)

Steven the clownfish (who is actually not as funny as he thinks he is), has a kick-ass superpower. you see, he won't give up...ever, ever, ever...and he keeps telling June/The Outlier how wonderful and strong she is ...even when she isn't feeling very strong, even when she's scared. and that is the most powerful super power sometimes.

Another part of The Outlier's team is "Rad".  He doesn't have superpowers all on his own, but with the help of his magic...errr (don't say, "nuts'...don't say, "nuts"...)

"RAD" MACHINE... he is able to get rid of the cranium-threatening, bastard thugs. 

It's really a very interesting process and could be a high point of the movie when the squirrel presses that little white button (with the musical symbols on it) and is starts playing "Let It Go" and all the cranium-threatening, bastard thugs run screaming out of the box and implode.

Only we may need to to go for a R rating because of the gore and the swearing that would inevitably ensue. How many "fucks" are allowed in a movie before it becomes R-rated?

Let's think on that one.

Another part of the Invincible Team is "Onci" (the "c" is hard, like "Oncky")
Yes, he may look like an unassuming hedgehog, but he has the power to work with RAD and give June/The Outlier magic pills that help protect the precious things inside her blingy cranium box. But his greatest superpower is that he GETS how fragile and valuable those things are, and he is so darn cute, you really want to just hug him. Only you can't. Because that would be inappropriate.

Finally,  June/The Outlier had another part of her team who tripped on some glitter and turned up LAME, so she had to replace him with...

Dr. Awesome McAwesomesauce!!!  

Who is a flying squirrel. 

Obvi!

and what's cooler than a flying squirrel? Nothing. And flying squirrels can never end up lame because they FLY! Hello!?!?!

Oh, I forgot one detail that should be inserted earlier in the movie...
"It's called "foreshadowing", kiddies.)

The things is....not only were those cranium-threatening,  bastard thugs threatening the precious things in June/The Outlier's blingy box...they were using some kind of electrical device to try to get at it....and that was sending nasty zappity, zap signals throughout June/The Outlier's body that caused her to twitch and want to punch anyone in the face. Which isn't an official "Ninja Warrior" move and could get her disqualified from ever participating in any future Ninja events.

So, Dr. Awesome McAwesomesauce worked his magic and concocted a special brew that stopped (most) of the twitching and most importantly stopped June/The Outlier from wanting to punch people in the face.

The last act is kind of murky still, but I know the ending:

THE END

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!