The One in Which I Totally Embarass Schmoopy/Steven. Squeeee!

I was revisiting some of my blog posts, which I do occasionally to make sure I'm not totally repeating something I said before. FYI, I know I repeat things sometimes. Well, I don't know necessarily what it IS that I'm repeating, but I know I've said some things more than once here. I blame it on the treatment - radiation is notorious for affecting our short-term memory. But then I talk to other people who are my age or older, and they say, "I do that all the time, too". So, whether it's brain cancer or age - you pick - I wanted you to be aware that I know that I repeat myself.

Oh, Oh! Warning! Ear worm coming on! "I repeat myself when under stress...I repeat myself when under stress..." (Click at your own risk of spreading the earworm.)

 (Kiddies, you're just going to have to trust me on this one. You had to be in your formative years in the 80's to really appreciate this. But I didn't receive these socks for nothin')

(Now, that's one I think only my generation is going to remember. See! There are things we remember! Doesn't that feel good?) My job here is done. Oops! Not quite.

I had three high school friends who came to visit me within the last week. Two flew 3,000 miles all the way from the D.C. area to spend a day and a half with me. One lives in Los Angeles - and for all of you that don't live in California, look at map, people. It's BIG. It's not like she lives down the block.

But I digress.(It wouldn't be an authentic June blog post if I didn't bird-walk a little bit, right?)

I was extremely thrilled to see all three of them (of course), and honored that they took the time away from their busy lives to come out here to see me. Unfortunately, I had one glitch in my visit with Pam & Jill. When we planned the visit, my chemo cycles were not going to coincide with the visit, but with my Tooth Saga, I was on the tail-end of cycle #9 when they arrived. Saturday morning laid me out flat, and I had to take another five hours of sleep before I rallied for a wonderful evening. On the plus side, they got to explore downtown Livermore, and I was the recipient of some awesome goodies as a result (see socks above):and this sweet shirt:

If you come visit me, expect your car to be dirty when you leave. It's all DIRT, Baby!

It was all good in the end.

 Snuggled under blankets, listening to live music at Double Barrel in downtown Livermore. 

Visiting with Allison was a lovely time. She drove out from San Francisco at rush hour. I warned her about that, but then I remembered that she lives in L.A. (Hello! McFly! You call this "traffic"??) Fortunately, she arrived just in time to enjoy the sunset in my backyard, and we had a chance to discuss Life, Love, and the Pursuit of Happiness around the firepit. No pictures. I'm finding that I "forget" about my phone more and more - except for the app that reminds me when to take my meds. And pictures of sunsets. And sunrises. But spending time with people trump phones 100% of the time.

Saying good-bye with all these friends was slightly awkward (for me). Doesn't the saying go, "This isn't saying good-bye. It's just saying 'See ya' later!'"? But we all knew/know that in my case, that may have been good-bye. In fact, they might not have gone through that much trouble if there wasn't at least a tiny part of them that was saying, "This may be the last time I get to see June alive." We didn't discuss it, but I talked to Steven about it, though. (Hint: I talk to him about pretty much everything. So, if you tell me, "Don't tell anyone about this,..." that really means, "Don't tell anyone but Steven about this....")

Don't worry, my Warrior friends. I'm not dwelling on that last good-bye. If you follow me on social media (Instagram, Facebook, etc.),  you know that I'm spending a lot of time enjoying my new surroundings in Livermore. Sunsets, sunrises, walks with Schmoopy and the doggies...and trying to transform this house into our home.

It just so happens that my next MRI is scheduled for next Monday, 10/26, and that always brings on the scanxiety syndrome. Through yoga, meditation, and my Schmoopy, I keep re-centering myself to the present and the gifts I have every day: visits with family and friends, the beauty that surrounds me, and my best friend/love of my life...the best thing that ever happened to me. Namely: Steven.

I was at a wine club release a couple weeks ago, and one of the club members leaned into me while Steven was talking and said, "You know how lucky you are to have him, right? He's a good one."  (I resisted the urge to say DUH! And if you are reading this right now, #sorrynotsorry #braincancercard #freepass) Just in case you didn't know it by now, yes, I do know how lucky I am. He gets embarrassed when I talk about this, but that's just one of the things that makes him so special.

I talked to my "mother-in-love", Judy, the other day. (She lives in Arizona.) She feels helpless that there's nothing she can do to help me, living so far away. I get that, but there's really nothing that anyone can do. I told her, you already did probably the most important thing to help me through this.. You raised the man I married, my Schmoopy. I don't know what I would do without him. The greatest gift of all.

He shaved his head for me, but winery guests were afraid he was sick - and my hair grew back, so he has hair, too, now!
___________________________________________________________________

This totally didn't start out as a blog post singing Steven's praises, but I started writing, and this is what came out. It was going to be an essay on how to achieve World Peace and stop Global Warming. But I guess that one will have to wait. Priorities, people. Priorities! 

P.S. I know I've told you how bitchin' he is before. That's not a brain cancer or age/memory thing. I just think he deserves it.

P.P.S. Thank you so much to Jill, Pam, and Allison for the visits!!! Love, June Xoxoxo #mfbcfnw

P.P.P.S. And not to bum you out, but just a reminder: It could be "Good-bye!" for any of us - and not "See you later!" Something to think about when you are with your precious loved ones.

The One in Which I Unpack the Love

Earlier this week, I had a Terrible, Horrible, No Good, Very Bad Day. Steven had left for work already - as every day during harvest season. Sometimes, I feel emotional and down for no particular reason. I know. I know. I have a pretty good reason: I have brain cancer.

But I have brain cancer all the time. And most of the time, I go about my day and don't even think about it.
Okay, I call bullshit on myself. I do think about it, but I don't DWELL on it.

But this particular morning, it was overwhelming. I was sad, and depressed, and....lonely. Honestly, all I wanted to do is lay in bed, safe under the covers, Steven's arms wrapped around me. He can't say, "It will all be okay.", but he could say, "I'm here for you."

Only he couldn't. I was alone In our new house, and he was working hard for Harvest 2015,

So, I did the next best I could think of: I pulled his out-of-shape, holey sweater from on top of his dresser and put it on me. I took a big sniff of it first - to smell the Schmoopy scent. And then I just curled up in my bed, and cried. Big, juicy tears rolled down my face, and I used the arms of Steven's sweater to continually wipe them away. Also, to wipe my sniveling nose. (Sorry, Schmoopy! I promised that I washed it after! See!)

What do you think? Circa 1980's?

After a good, cleansing cry, I lay in there in bed, just thinking through my mood and what was going on. It wasn't the end of the world, but I had every right to have a meltdown. I didn't even have to use my #cancercard. Moving is stressful. But I was crying about my cancer - still feeling sad, depressed, and alone.

As I looked out in the distance and contemplated my situation, I remembered how scared and upset I was when I first got my diagnosis. And how many of you rallied around me, surrounding me love and prayers, and strength. And in a "made-for-t.v.movie moment", I decided to get up out of bed and find the box that we had in the garage that I labelled: "June - post dx inspiration - study".

Study was referring to the location that box would go, but now that I think about it, it works as a command, too. 

I wrangled with the boxes in our garage and found the right one and hauled off to the study - which is a fancy word for "Steven's and June's shared office where he'll drive me crazy watching Golden State Warriors post-season highlights (without headphones), and I'll end up in the family room using my computer". (It's just a convenient shorthand.)

I started unpacking the box and there were two posters on the top - one was from our team for Relay for Life (Go, Wine Girls!), and one was given to me by Jeanne Mullins. She dropped it off and said, "I was just practicing in my calligraphy class, and I thought of you. I lost it right then and there, and sobbed. Jeanne was diagnosed with advanced pancreatic cancer about a month after she gave that to me, and died a peaceful death surrounded by the love of her family. Again, this sounds like a Lifetime movie script, but this really happened just like I'm writing this.

I'm not giving up, Jeanne. But thank you for reminding me that I can scream and cry. 

Go figure, Steven came home right then, as I stood in our study/office and said, "What's wrong?" I suggested that w go for a walk in a few minutes, and I could talk to him about it. The answer to that question was more than a one-liner. We had a good walk around the vineyard with the doggies. I held his purple, calloused, and blistered hand from harvest work, and talked & cried. Probably, he didn't understand half of what I said, but that's okay. He was there for me.

The next day, I started to reconstruct the corner I had in my old house, with all the treasures and reminders from all of you. I finished today.

This is my new sacred corner - filled with love! The corkboard on the top has my goals for this year

Top Shelf: Yes, that is my radiation mask in a purple wig and Minnie Mouse ears.

Shelf Two: Many angels and ninjas, etc.....all keeping Dr. Awesomesauce company

Shelf three: The Stars of The Kick-Ass Ninja Adventures of June/The Outlier .<---click for the story

And so many other treasures of positivity!

Instead of putting up each card, letter, and email you sent me, I put in a container customized for me that's labelled #MFBCFNW. As I put each thing inside, I reread the sweet, loving, thoughtful things people took the time to send me. Many of you included phone numbers so I can call whenever I need anything. It struck me like a sledgehammer that am never alone.

Ninja Stars on the left, all your loving messages on the right. SQUIRREL!

[I also looked at last year's goals that I had and decided to add pictures of the things I had accomplished, despite the odds. I'll have to include that in a future post, I think!]

And then...and then...this morning I woke up to THIS on my timeline on Facebook:

In case you were wondering, that was a spectacular way to start my day!

When I start feeling sad, and depressed, and lonely again, instead of going into my bed and hiding under the covers, I'm going to go into my new sacred spot and STUDY in my study. Assuming, Steven's not watching Golden State Warriors highlights...

The One in Which I Explain How Brain Cancer Made Me a Hugger

June's Brain Cancer 101:

I am going to get a technical here in the beginning, so things will make more sense later on... Sorry! I won't charge you tuition or anything, so no worries about student loans, etc. And it ends with hugging, so it will totally be worth it. It you are really lame, and you want to skip to the hugging part, scroll down...

Here! This should tide you over:

One of my favorite hugging pictures: two of my girls in fake furs at H&M.

My tumor was on the motor strip of my brain. I also have/had some "weirdness" (obviously a highly technical term that you will have to google later) on my scans adjacent to this location, on my right temporal lobe. They (local neuro experts as well as the UCSF folks), aren't sure what exactly is going on there - it's "ambiguous" - but after two separate Tumor Boards reviewed it, we're treating is as a "secondary location". This actually makes sense, too, because seizures (my red flag indicator that led to my diagnosis) are more often associated with the temporal lobe than the motor strip. And it explains why my radiation treatment was pretty complicated  - for the physicists - not me! I just laid there and got zapped. It sucked, but it wasn't complicated... Oh, and why I have more than a "patchiness" to my hair loss as a result. Try: half of my head is bald; Steven shaves the other half about every 3 days or so. #superschmoopy

Here is a basic diagram of the brain, so you get an idea of what I'll be talking about:

 
First, let's look at the motor strip. (See below for detailed diagram).  The tumor was located around the area where the mouth produces speech: lips, jaw, tongue, etc.  BTW, this is one of the actual diagrams that the UCSF neurologist shared with us. I'm imagining that it's one of those visuals that they create for medical students to help they memorize all the shit they have to memorize.  I hope that's what it's for - because otherwise, it's primary purpose is to give people horrible nightmares?

Freaky looking, no?

 Looking at this - it seems pretty clear to me that my tumor was located around that creepy open-mouthed face because it is the actual articulation of some words that I had the most problems with immediately post-surgery. It also explains why my neurosurgeon and neurologist both had me go through the paces with showing that I had no weaknesses in movement or perceived sensation in my left side of the rest of my body - face, arm, hand, legs, etc. because if you follow logically up that motor strip, that would where the "deficits" would be located.

Hey, kiddies - A little lesson for you out there: the medical community likes to refer to losses in physical/cognitive abilities as "deficits". It sounds more clinical and less traumatic, I guess. FYI - We talked about possible "deficits" the day before my surgery, including significant weaknesses on the whole left side of my body.  Newsflash: despite my drugged up state, it didn't feel less traumatic to me. Nor was I less grateful when coming out of the surgery to realize that my left side of my body was fully functioning/strong.

The "weirdness" located on the temporal lobe explains the more subtle but annoying deficits in my speech - what I call fluency, but is more accurately referred to as "prosody, or the rhythm of one’s speech" (source: Right Temporal Lobe Functions) It appears to be getting better - with lots and lots of practice speaking, but you may notice it especially when I'm tired after a long day, etc.

[For those of you that have read this far, you might want to apply for some college credit units for your effort. Of course, there will be a quiz later to prove that you were actually paying attention.]

I've been reading more about this temporal lobe stuff because of the follow-up MRI I had done last week. The good news is they saw shrinkage in the primary area AKA the motor strip where the tumor was resected (Yay!). However, they are still picking up some "weirdness" in that secondary location. It's a wait-and-watch kind of thing...which is not my strong suit. And with all this time on my hands, I'm doing a little poking around, learning more about the ...

RIGHT TEMPORAL LOBE:
I thought this was a really interesting thing I found on the interwebs:
Sometimes damage to part of the temporal lobe can cause personality changes such as humorlessness, extreme religiosity, and obsessiveness. People may have an overwhelming urge to write.  The Merk Manual Home Edition.

I haven't noticed a loss of humor or more religious tendencies. One could argue that it would be hard to gauge my "obsessiveness" on an objective scale in general...But an "overwhelming urge to write". That's pretty cool. Maybe that explains my interest in blogging? I've always liked to write...I just didn't have the time that I have now! (I have a LOT more time on my hands...especially when I wake up at 3:45 a.m.! DOH!)
 
****THE HUGGING PART****

 I have noticed a personality change in me that is not indicated here, though...

I'm a hugger! Why would I suddenly become a hugger? Don't get me wrong. I've always liked hugs. But I've never been what one would call a "Hug Initiator".

I googled that shit, and the first several links were about tree huggers (#googlefail) - but I did find this blog about Wanting to be a Hugger, though, which I found really interesting. It has a central Christian religious theme, but even if you're not religious, you might find it thought-provoking. I can totally get behind the catchy message: "More like Jesus. Less like a Jerk".

I'm pretty sure, though, that becoming a Hugger has got nothing to do with my tumor location or the various diagrams of my brain. 
 <eh hem>
Question from the audience: But June!! Why did you make us read all that stuff about your brain and tumor???? 
June: Quit yer whining! Hey, you learned some good stuff today, right? You may even be inspired to go back to medical school for all I know. You're welcome.

I just wanted to explain - if you noticed all the hugging - I didn't want you to chalk it up to brain damage.  June the Hugger is about an emotional transformation, not a physical one. 

If you were at this week's Livermore Fundraiser Event, you saw June the Hugger in full force.
Have I met you before? Doesn't matter! Imma gonna give you a hug!

Here is a picture I blatantly stole from someone FB account. Thank, Irene!

I wish I had more pictures to post of the event, but I was too busy hugging! Oh, and ROCKIN' my Mother Fuckin' Ninja Warrior Purple Hair! #mfbcfnw

Wednesday morning, before the event, Steven and I went for a walk, and we talked (and cried) about how overwhelming and humbling it was to have so many people in our lives who are so good and kind and generous...and we talked specifically about this blog and how some people tell us that they are inspired by our journey...

But I told Steven, they've got it all wrong because THEY inspire ME. In my mind's eye, I see my arms wide open, and YOU lifting me up with your words and your prayers and your thoughts.... And all I want to do when I see you is wrap my arms around you all and say, "Thank You!" and "I love you!"

THANK YOU! I LOVE YOU!!!!

And I'm going to do it every chance I get. Consider this your warning!

Did Brain Cancer make me a Hugger? Hell, yes! And I'm the better for it. Who'd a thunk?

______________________________________________________________________________

P.S. I'm going to do a whole blog about the Livermore Fundraising Event soon, but I'm begging anyone out there that has pictures to share. I'm serious when I say that I basically have none. I was too busy hugging people. If you're willing to share, please email them to me at: junemirassou@gmail.com.  Thank you!!!

The One in Which I Explain the Importance of my Ninja Stars

So, I had this high school friend, Pamela H....the kind of friend with whom you exchanged notes throughout the day in high school, passing in the hallway. (Kiddies, this was an archaic custom that happened before cell phones and texting...I KNOW! How we suffered!). We were are such geeks, that I highly doubt that anyone else's notes were filled with the same kind of socio-political commentary that ours had. (We were 17 years old! Jeebus!)

I went off to college in D.C. to study political science (go figure!) , and then my parents moved far away from our hometown, so I lost contact with pretty much all of my high school friends throughout the following years. Until Facebook happened. Suddenly, I was able to reconnect with so many of my hometown friends - and just in time for our <mumble,mumble> reunion! What a great time, reconnecting In Real Life with these people!

How is it that the one picture I have of Pamela at the reunion, she is not facing the camera??? Oy!

I look at this picture now and see so many faces that have reached out to me in the last 3 months and filled me with so much support and love and encouragement...Just give me a minute...
<grabbing some tissues>  Big Hugs & Smooches to all of you! You have no idea how much you have helped me through this challenging time.

But I digress...Shocking, I know. I usually am so good at staying on point and being succinct...
<snortle!> Hey, give me credit because: 1) I always have a point and 2) I eventually get there!

Pamela lives in New York State now in a place that sounds like Shakespeare lived there at one time - which totally makes sense because she has always been wicked smart and had a love of literature. I mean, she studied Latin in H.S. - on purpose! And she's a librarian! (Yes, kiddies, these still exist today in some locations! Google that Shit if you don't know what it is.) It was amazing at the reunion how quickly we slipped back into our conversations, like no time at passed at all. It was difficult to get into anything deep (see picture above for evidence), but I had heard that she was going through her own Ninja Warrior Caregiver Superhero experience back then...

So, I guess it shouldn't have been a surprise to me at all that a package arrived from her "Shakespeare-town" not long after I went public about my diagnosis. It was filled with thoughtful, lovely treasures to amuse and comfort me, including this:

A handy camo tote bag, filled with little ninja stars to remind me that I had permission to FEEL many things on this journey. In fact, it was a given.

What she didn't know at the time was that she had sparked an idea within me: 1) I could learn to make ninja stars myself. Any self-respecting Ninja Warrior should know their way around their tools and improvise as required, right? and 2) These could be a physical manifestation of not just my feelings, but my hopes and inspiration and strength...

And that's how the idea was born to make my own Ninja Stars. Okay...so, now what?

Step One: Go on the Interwebs and search youtube for a tutorial on making Ninja Stars. (It probably doesn't surprise the kiddies out there that I had many choices.) I chose a simple, straight-forward one that seemed to have a lot of views already. I'm a visual learner, and this worked for me.

Step Two: Experiment with different paper to find the ones that work for you. Cardstock was too thick for me; construction paper was a little too flimsy. The best for me is the already square scrapbooking paper, but I didn't discover this until late in the game...

Step Three: Go for it!

I started making ninja stars before every radiation treatment. I wrote inspirational words or notes to reflect my mood at the time. Steven suggested about 2/3 of the way through that I date them as a record of what I was feeling, but it was too late. And besides, I have this blog if I ever need to look back for that, right?

Then I made ninja stars for all of the radiation technicians and nurses who I saw ever day with a note telling them how grateful I was for their compassion and care, and reminding them that they were Superheroes, too! It got to be a routine: they would ask me what I had on my ninja star that day, and I would clutch it across my chest while strapped into The Mask, pinned against the table, and being zappity-zapped.

Part of my collection - I keep finding them in pockets and purses...

They have been such a source of comfort and strength and focus for me. And now that my initial treatment is done, I guess I'm a little addicted. I started making ninja stars for others - my Carson School Family and my Steven Kent Family... These say, "Live Laugh Love". It's a simple message, but when it comes down to it, it's pretty simple.

I wish that for all of you  - 

not just during this holiday season, but every day.

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!