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 Try to Say "Thank You!" to Livermore

This blog entry is going to be a little bit different. I've tried more than once to write this,
 but I just keep getting "stuck" - and crying a bit alot... I've been trying to tell the story of our Livermore Fundraiser a couple weeks ago, and how grateful our family is for all of the effort and generosity...but it seems that I can't find the words to adequately express it. Sorry if it gets a little messy! Let's call it a Love Letter of sorts...

• Thank you to all the amazing people who work at the Steven Kent Winery. For years and years, you have been the heart and soul of the SKW Family, but Steven and I could not imagine how we would have made it through these 3+ months without you.

Our Management Team- The Magic Behind the Mirrors

And Our Tasting Room Peeps - The Best Team You Will Ever Meet!

• Thank you to all the incredible people who have to come to visit our winery again and again (and joined us for off-site events). You, too,  have become part of the heart and soul of the SKW family. 

Cheers to our Loyal Fans and Club Members!

I just started working at the winery in the tasting room in the spring 2014, and I often felt a lot of pressure  - It was/is so important to me to learn our club members' names - because you ARE family.  And you deserve to be treated that way!


Kiddies, I'll let you in on a little secret: our son, Aidan, is the the one that knows every single SKW family's name. If you don't know who he is, he's the one at the front of the house that looks like a  mini-Steven - except that he was bald when Steven had hair, and now Steven is bald, and Aidan has long, long hair - I know, it's complicated! [But one things for sure:  he would NEVER introduce himself as Steven's son.] The secret's out! Sorry, Aidan!

• Thank you to the marvelous Livermore Wine Country Community who stepped in when things seemed impossible....and made it possible.

When I was diagnosed in the end of September 2014, it was the height of harvest season. Normally, Steven would be working 17+ hour days and sometimes sleeping at the winery to get an early start.  And that's how it started out this fall, too. Harvest 2014 was an intense one, too. Fruit was coming in early and at a break-neck speed.

September 23rd, that all changed for Steven because he was suddenly pulled away from the vineyards and thrust into the hospital halls - and then by my bedside at home, as I recovered from surgery. We are so grateful to the people who stepped in to allow Steven to be there by my side  - especially Craig Ploof (SKW's Assistant Winemaker) and so many people at Wente [our "winery next-door neighbors" and where Steven & Craig share the production facilities] -- Not to mention the Super SKW Team (see above) who filled the void in so many ways, while continuing to do everything already on their plates. What's that saying? "Busier than a one-armed paper hanger"? Sorry if that's not political correct. #freepass!

Craig hates to have pictures of himself online, so Shhhh! This will just be our little  secret, k?

A short little anecdote that illustrates my point: The first time Steven visited the Wente facility post -(my)surgery, and I tagged along because he couldn't imagine leaving me alone for that long. I was wandering around the barrel room while Steven and Craig tasted through the SKW bins of the "Baby Wines" in various stages of fermentation that would become part of the 2014 harvest wines. One of the Wente employees (who was driving a forklift through the area) unexpectedly stopped his vehicle, jumped down and headed towards me. He said, "I don't know you very well, but can I give you a hug?"
<lump in throat...teary-eyed even now remembering that act of sympathy and kindness...>

We also received so many generous donations for our fundraising cause from other local wineries, Steven and I are overwhelmed by your kindness. It really feels like we are in the tender arms of an extended family.

• Thank you to Downtown Livermore for all their thoughts, prayers, and generous donations to our cause as well.

Rachael Lavezzo Snedecor came into Steven & my life as a winery family member, when Steven first started working with his father in Livermore at Ivan Tamas Winery. I vaguely remember that there were about 17 wineries there at that time. (Now, there are now over 50!) Folks thought of Livermore as a Cowtown - but that "cowtown" has grown into a respected wine growing appellation, and downtown is a Main Street filled with cool places to shop and eat. I'm thinking we have to give props to Rachael and her peeps for that continuing effort and vision since she's now the Executive Director of Downtown Livermore, Inc.

Apparently, this fundraiser at The Vine Cinema & Alehouse was also Rachael's vision, too.  But as they say, "It takes a village" - or a Family, in this case. On January 14, 2015, all these Family members came together to support us in the most touching and generous way. Our SKW family coordinated amazing donations from the Livermore Wine Country/Downtown and created awesome baskets for raffles, too.

Thank you for all your generous contributions!

Family & Friends from near and far came together to support Steven & me and our children. We shared a movie together  - one of my favorites, "Parenthood" - and those that couldn't attend also donated.

Thank you to my "Carson Family" for attending and supporting us, too!

 It was a truly beautiful expression that Steven and I will never forget. And the funds that were raised will help us through the uncertain future that we have ahead.


So, this is my love letter to you: Thank you to ALL of our Livermore Family for making this possible. A thousand, million, trillion kisses and hugs to you for proving yet again how extraordinary you are - and how lucky we are to be a part of it.  LIVERMORE ROCKS!

Love, June AKA #MFBCFNW

_________________________________________________________________________________

P.S. I couldn't believe how many people had never seen "Parenthood" (the movie) before! Do yourself a favor and track it down. It's an oldie (1989), but a goodie!

And I leave you one of the great scenes from the "Parenthood" movie...

[Gil has been complaining about his complicated life; Grandma wanders into the room]
Grandma: You know, when I was nineteen, Grandpa took me on a roller coaster.
Gil: Oh?
Grandma: Up, down, up, down. Oh, what a ride!
Gil: What a great story.
Grandma: I always wanted to go again. You know, it was just so interesting to me that a ride could make me so frightened, so scared, so sick, so excited, and so thrilled all together! Some didn't like it. They went on the merry-go-round. That just goes around. Nothing. I like the roller coaster. You get more out of it. 

I like the roller coaster, too, Grandma. I could use a few less twists and turns for a little while, though...but I don't think we get to choose. And I guess that's part of the point....the thrill is the unknown. Not just going 'round and 'round.

The One in Which I Explain About the Rabbit Hole

I read a blog post that really hit home for me yesterday. It's called Tied for the Worst Feelings Ever from the blog, The Liz Army. Liz is one of the bloggers that I've discovered online through twitter - (and I have a link to her blog on my website under "Other Brain Cancer Warrior Blogs" if you want to check them out at the bottom right of this page.)

Connecting with other people that are sharing my challenges and experiences is really important to my healing...and sanity, I guess! Sometimes I feel like I've slipped down a Rabbit Hole where nothing makes sense. Reading someone's thoughts and feelings and thinking, "Exactly!" makes me feel not so alone and crazy.

Well, yesterday, Liz's blog entry hit me square in the stomach ...and the heart. Because she said,

Tied for worst feelings ever:

• People assuming you beat cancer when you haven’t.
• Reminding people you still have cancer and making them cry.

Over the past week the following things made me feel real shitty.

<Thwunk> Exactly, Liz. I know exactly what you mean.

I recently had the wonderful experience of spending the holiday week with my family - all of my kids and  my mom, dad, sister, brother, his significant other, my niece and her family... It was a very special get-together that I will never forget. But included in that experience was a number of difficult, one-on-one conversations with members of my family in which I had to be brutally honest with them about my life and my future. Because I realized that they hadn't quite "got it"-  what it is like to have GBM and LIVE with cancer.

It seemed cruel and inappropriate to let them assume because I look healthy - albeit bald -  and I'd finished my (initial) treatments, that I was going to be "okay".  They needed to know that, down the Rabbit Hole, "okay" means something entirely different.

And then nearly every day, when I share my current experiences/treatment, I get responses like, "You are 'doing it"!" and "Keep it up!"  --- meaning I am "beating cancer".  And their hearts are in the right place - they want to be encouraging and supportive.  So, I end up feeling "really shitty", as Liz put it.

Because I have to be the black cloud that says, No, I'm not "beating cancer".  Because don't forget, we've slipped down the Rabbit Hole where nothing makes sense in the normal context:
You have a disease. You seek the very best doctors and the very best treatment. Ipso Facto: You're cured, and you go on your merry way...

And yet...this disease doesn't go away. Living with glioblastoma multiforme (GBM) means just exactly that. LIVING with it. In my body. In my brain. Indefinitely.

I didn't invite it to the party, but it came just the same. And it will. not. leave. 

It's the strangest damn party that I've ever been to - and if you come along, too, you need to know the straight-skinny about this uninvited guest. Because it's here to stay. The best that we can hope for right now is that it behaves itself and doesn't make a scene.

Earlier in my diagnosis, I wrote about how I might be living with cancer after my initial treatments, meaning that there was a chance that it would all be gone. But that was about me, wanting to put that positive energy out there.  Not wanting to focus on the negative. Can I envision a time that GBM will actually be eradicated from my brain? Yes. I can.  Maybe miracles do happen? Maybe they will discover/develop a cure in my lifetime? It could happen. And I believe there is merit in that mindset - focusing on the positivity and sending that out into the universe. 

But it's also important that people realize the HERE and NOW of our situation.What it's like to slip down the Rabbit Hole...


This is how Liz put it:
...saying I “beat cancer” diminishes all of the crazy I deal with every single day. From planning for retirement, to advance directives, to adventurous vacations, to home buying, Brett and I weigh every decision in the light of me being a person living with brain cancer. Our future is murky and uncertain when it comes to all things Liz.

And this is why Liz's words hit home so much for me. Likewise, Steven and I (my whole family) are dealing with big decisions that come with the WHAT IF's of my disease: How do we try to stay in the present and "suck the marrow out of the life" while still being responsible about our uncertain future? We need to make plans, but let's just say that we're not buying any non-refundable tickets. That can mess with your head.

In a nutshell, how does one actually LIVE with brain cancer?  I think that is our most daunting challenge here.

I'm just thinking aloud here... but maybe "beating cancer" isn't the same thing as eradicating cancer or killing it? Maybe deep down in this Rabbit Hole, "beating cancer" is learning to live with it at your party (LIFE) and having a fuckin' rad time anyway?

Cancer is one unruly, batshit crazy guest, no doubt about it. It's like your wacky, alcoholic relative who comes for dinner, gets wasted, and ends up spewing political rhetoric, and spilling wine all over the table...
 <eh hem>
I'm imagining...hypothetically. Because of course, I have no one in my life like that...

But it is OUR party, and cancer is just the uninvited guest. No doubt, it has an influence on how things go, but one thing it can't do is decide how you react to it. For me, the first step was to stop pretending that it was just going to leave. So, now what? We're still figuring that out.

Yep. Teachers have to dress up for Halloween, too! (2011) Guess who's the crazy Queen of Hearts??

But it's really important that anyone else that comes to our party understands that Cancer is going to be there.

So, might I suggest this little ice breaker:
Welcome! That's Cancer over there. She's living with us. Just so you know, she's one crazy-ass bitch, but we're getting used to her. The party's over this way....

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 Walked The Hill Alone for the First Time Post-Dx

Yesterday, I strapped on my running shoes and went for a walk by myself up Communications Hill! What's the big deal, you say? Well, let me start from the beginning...

The walking part isn't new - I've been walking with Steven almost every day since I was released from the hospital - even before, I guess. After my surgery  - (actually, I think after almost any surgery?) -  they recommend that you get up and start moving/walking ASAP. Steven and I started with the hallways of the hospital, wheeling the IV cart with us. 

I don't have a really clear memory of the walking in the hospital hallways...I wonder why....

Once we got home from the hospital, we started doing a mini-loop around our block...then expanding a little more...and a little more...until we had a 2 mile flat loop. We didn't break any land speed records, but we started a routine.

As part of our new routine, we always hold hands - partly because he's my Schmoopy, and we were are going through a pretty challenging time...but also, I wasn't sure how steady I was with all the meds I was on. And also, if you remember, I was still having focal seizures on the left side of my face multiple times a day. At first, we would stop and stand there, Steven holding me close while I breathed through the seizure. But it got to the point where I was walking right through them - pointing to my face so Steven knew why I had suddenly stopped responding in the conversation.

Then we get hooked up with Dr. Awesome McAweseomesauce who found the right cocktail of meds to stop my focal seizures all together.
<insert angel choir singing>
....and I continued to heal and recover from my surgery, getting stronger every day....
until one day, I brazenly suggested that we "do The Hill" - which used to be a regular part of my fitness program. Woot!

Communications Hill is a little bump, really, that is about 1 mile from our house and a mecca for fitness enthusiasts because it's got this set of steps that draw exercise fanatics (and assorted other folk, apparently) from throughout the valley - much to the consternation of the neighborhood! Whoops!

This is the "bottom" set of stairs. There's another set above this that leads to the top of The Hill.

You don't need to "do the stairs" to get the benefit of The Hill. It's a lovely 1-1/2 mile loop with a max. elevation of ~350+ feet (I googled that shit.) that gives you expansive views of South San Jose and the Santa Cruz Mountains.

So, Steven and I expanded our routine to go up and down The Hill.

Baldy Couple on the Hill!

 Of course, sometimes, it kicked my butt. And I had to take a long nap in the afternoon. That's when I realized that I couldn't do the Hill every day. Especially once I started radiation/chemo treatment. I listened to my body - and some days were flat loop days, some days were Hill days, and some days were, "Hell, no! I'm going to nap for 2 hours!" days.

Kiddies, Hill Days are the best days. DUH!

I have to add this seemingly insignificant little detail because it matters later. (Kiddies, this is a literary device that's called "foreshadowing".) Walking The Hill from our house involves a nice flat mile in a neighborhood followed by an absurdly long traffic light wait to cross over to access The Hill.

Have you ever thought about how differently people may feel about these images? And WHY?

 I'm going to let you in on a little secret: Y'all now by now that I'm a Type-A/Rule Following Kind of Gal.  Steven is...how shall I put it? A Scofflaw? Now, that's not very flattering, is it?  Let's say that he is way more of Risk Taker than me. And he thought it was ridiculous that I would WAIT at the corner for the Happy Little Person Light to indicate that we could cross the street. Even if we arrived just as it turned to numbers counting down, and there were no cars coming.

I had to have a serious conversation with him to get to understand the underlying fear that I had about it. I'm a person with: 1) a seizure disorder and 2) brain cancer who is 3) in a healing process and figuring out what I can and cannot do. I didn't KNOW if I could cross that street (4 lanes) in 22 seconds, and I didn't want the pressure of a zooming oncoming car - even if there were none in view -  to add to my stress. After my explanation, he did understand and we wait...and wait...and wait until the Happy Little Person Light says it was safe to cross. Phew! Back inside my comfort zone!

And that's pretty much how it's gone for the last 3 months - daily walks with my Schmoopy, hand-in-hand, talking about Life, Love, and the Pursuit of Happiness...and oh, yea...cancer. I don't think I've managed to take a single one of these walks without crying a little bit. It's like therapy. And both Steven and I have said, in a strange way, our relationship has never been as strong as it is right now.

I'm currently done with my initial treatment of radiation/chemo and awaiting the results of my first post-treatment MRI. Still definitely recovering - I have stronger days and tired days, but overall, feeling very healthy. And Steven is feeling confident enough to get back into the swing of things at work, etc.

Yesterday, he had a club release at the winery - a long day which meant no walk for us unless we did early in the morning. Which we didn't. So, I put on my big girl panties, and I said, "Self, today is the day that we're walking alone. And you know what, Self? I'm feeling pretty ballsy, so let's do The Hill!"

And that's all it took. I was a little nervous at first, because it felt so strange to be walking without Schmoopy right by my side. But the more I walked, the more giddy I became. And guess what? When I came to the internably long traffic light - the Happy Little Person Light had turned to numbers...and guess what I did! I picked up my pace and actually jogged a few steps to get across before the numbers were all counted down. I giggled, imagining Schmoopy saying, "Well, look at you, you Scofflaw!"

I chugged up that hill, and took in the view, said, "Hello!" to all the freakish dedicated fitness peeps on the stairs, and stopped to take a few pictures at the top.

I looked like this:

But I felt like this:

And because I was so restrained and didn't curse in this whole entry...

[Do "shit", "ballsy" and "butt" count"? Nah!]

 I feel like it is entirely appropriate for me to say that I am imagining that I'm shouting here:

Carpe Fucking Diem, my friends! CARPE. FUCKING. DIEM!

 _____________________________________________________________________________

P.S. I'm not giving up my therapy walks with Schmoopy, but it sure feels good to regain some of my independence and confidence.  Next up: getting my Driver's License back!

The One in Which I Explain What the #MFBCFNW is Fighting FOR not AGAINST

A couple months ago, when I started to venture out on the interwebs, seeking out like-minded Brain Cancer Survivors, I stumbled across the wonderful blog, The Brain Chancery, which I've shared with you before. And poking around on his site, I discovered an entry that really made me think. And the same issue has come up for me many times as I read other survivors blogs, tweets, etc.

First of all: I have to say that every cancer survivor is on his/her own journey. And I'm in NO WAY judging anyone that is taking a different path. Everyone has to figure out what is right for them - physically, mentally, spiritually...

But I felt like I connected with so much of the attitude and thinking of this guy, Chad, that he really made me take pause with his entry: We Need to Talk: It's About Brandon. Kiddies, I could tell you nothing about it and force you to read it yourself. But I know some of you are lazy busy, and won't get around to it. And it's really at the heart of what I want to say today -   So, I'll give you a little Cliff Notes version here:

Chad jokes about naming his cancer "Brandon", but he gets at a more serious topic of the tendency to anthropomorphize (Dang! That was a hard word for me to say before my brain tumor!) CANCER itself.   Kiddies, "anthropomorphizing" is when you give a human form or personality to something that is not human.  For example:

Like when we have animals act like humans in cartoons and such...

This phenomenon is very common in the Cancer Community. We hear and see things like: "I hate cancer!" and "Cancer sucks!" And I'm not saying that it is a wrong approach. I'm just saying that I tend to agree with Chad with Brain Chancery that it feels a bit silly...
or maybe not silly, but.... unhelpful(?) to me. Because CANCER is just random fucking cells that are doing what they do. There's no reason it's happening. They aren't "out to get me." So, it seems (to me) like a colossal waste of time and energy to spend being raging pissed of them and focusing my attention on them.

Which brings me to my next point... 
(I know what you're thinking...)
So, June! Why are you calling yourself a Ninja Warrior? And more specifically a Mother Fuckin' Brain Cancer Fighting Ninja Warrior? (#mfbcfnw) Huh? HUH?

So, I feel like I need to clear up the confusion. I use the Ninja Warrior persona to represent my Inner Super Hero Self who can call upon the powers within me to fight. But I'm not fighting against cancer. I'm fighting for my LIFE.

As a Ninja Warrior, I'm calling upon all of the tools in my MIND/BODY/SPIRIT to find balance...reason...patience...peace, love...joy...hope...every mother fuckin' weapon in my arsenal ---
whatever I need at that moment to fight for my life. But notice that my "weapons" are positive.
So, yes, I'm fighting brain cancer because that's what's standing between me and life. but I'm not spending my days swinging numchucks at effigies of glioblastoma multiforme (GBM) cells (although it's fun to imagine it at times...)

You probably noticed that all the ninja stars I create have positive messages on them. Yesterday, the one I held during my first post-treatment MRI said: Hope and Joy on one side and #beinthepresent on the other. (and of courses, #mfbcfnw) Even the cursing and the "RAWWWR!ing" are my expressions of power, not anger. Does that make sense?

My mom gave me that adorable little pocket-size ninja! Thanks, Mom!

 Maybe it doesn't work for someone else - but I believe, for ME, the real BADASS powers lie in the positive! And this #MFBCFNW is going to keep using them to FIGHT FOR MY LIFE!

The real power is looking at life's challenges and saying, You know what? I'm going to
LIVE, LAUGH, LOVE for as long as I can and not waste my time focused on the stuff that I:
1) can't control.
2) don't add meaning/joy/happiness to my life.

Carry on, my fellow Ninja Warriors! Go forth, and be BADASS!

______________________________________________________________________

P.S. I just found and read another entry from Brain Chancery about this subject, and I'm convinced that we are twins separated at birth - except he's 11 years younger than me. But why quibble?

The One in Which I Distract Myself from My Scanxiety - and just try and CHILL OUT.

Tomorrow (Friday, 1/9/15) at 11:00 a.m., I will be stuffed into a metal and plastic tube - having high-tech stuff swirling around my head, clicking and whirring and knocking - scanning the New June's Brain. or June's New Brain? Whatever. You get the idea. The point is...I'm anxious, scared, freaked out...and not just because I'm claustrophobic.

You all know I'm claustrophobic, right? But ANYONE in that situation would be grateful for this beautiful, beautiful little white pill called Ativan that makes me able to even think about the situation now without breaking out in hives. (Okay, I cannot tell I lie: I just googled who invented Ativan. Three cheers to Stanley C. Bell! You rocked, Smartypants Scientist!)

Just looking at this picture makes my heart beat a little faster! GAH!

I suppose whoever invented the MRI machine deserves a lot of credit, too. Okayyyyy...So, I'll google it... Here ya' go:  Raymond Vahan Damadian. But I'm not cheering him without some Ativan in my system already. Sorry, Ray. I'm sure you were a super smartypants, too, but some people get the fuzzy end of the lollipop.

It will be my first post-initial treatment MRI. The results will then be forwarded to my "local team": radiologist and oncologist, as well as my UCSF team. I have an appointment on Monday, 1/12/14, with my oncologist to discuss the results. <gulp!> I know...We know that the first post-treatment MRI is a weird one. It will be only 4-5 weeks since my last radiation/chemo treatment, and I'm still tapering off my steroids. They expect things to look ...well, not normal.  Actually, come to think of it, my scans will never look "normal" again since I had a very "AbbyNormal" tumor up in there and with what they had to remove and zap and such, right?

But this MRI will (hopefully!) "just" be a new baseline, showing the effectiveness of my treatment as well as a new comparison point for all future scans.

But anyone who has/had cancer knows that feeling of SCANXIETY.  

[Confession: I'm suppressing the urge to break out into a song in Mel Brook's accent at this moment? I know I'm not alone. Why fight it?]

SCANXIETY is that feeling that overtakes us - I was going to say Cancer Warriors - but really anyone who has a chronic condition and needs to be monitored through scans to ensure there are no negative changes over time. It could be a recurrence, worsening of condition, or an entirely new bag of crap to deal with.  You know: everything we try not to think about in our every day lives, or it would make us crazy!

I'm trying to live my life these days - 90% of the time - focused on the HERE and NOW. Appreciating the present and letting go of those things that I can't control. But these MRI's - which will continue on pretty much forever in my future - bring up the WHAT IF's bubbling to the surface like a barrel full of corks floating in water. Try to push some down, and more just pop up somewhere else.

So....what am I going to do? I've already been online this morning, looking at cute pictures of animals - micro-pigs and hedgehogs, doggies, kitties, and of course....SQUIRRELS! (Hey, don't knock my hobbies! Haven't I already told you that the world needs less cynicism and more whimsy!)

Internet Lesson of the Day - Feel free to skip if you'd rather carry on with more serious talk.
Kiddies, I always try to teach you something useful, so here it is for today:  If you are willing to up your game from Pinterest, the real mother-lode of ridiculously cute animals is far and away reddit.com. They have whole subreddits devoted just to "Dogs Wearing Hats" and "Animals Being Derps".  But if you're a newbie... Quick Test: Do you know what a subreddit is? No?----> I suggest you start with the wildly popular and aptly named "Awww". And you can pin these on Pinterest and feel smug virtuous about contributing some semi-new content! Win-win!

This one is called: Kitten and Bunny Lookalikes.

Question from the audience: But June, how long will looking at adorable animals pictures really distract you?
Answer: Longer than you'd think...under normal circumstances. But with the scan a day away....not long enough, unfortunately.

It's not all about the scan, though. It's about the fact that we have to face the results of the scan and respond to them. We don't know yet what we're going to learn, but we are going to learn something. And we will have to make decisions based on that information. Which requires us to start actually looking at the WHAT IF's/THEN...scenarios, choices, options. So, Steven and I take deep breaths and start wading into the world of WHAT IF's with GBM patients.

So, how do we navigate this new, uncertain, scary time? How exactly am I supposed to CHILL OUT?!

Uh, oh! We've unlocked June's teacher-mode! Look out!

Let's reframe this situation, shall we? I may have many more MRI's in my future....which means a lot of more of these "Scanniversaries" and SCANXIETY ... as long as I have a FUTURE....

And that's very good news, indeed. Yes, it is!

 So, I need to associate Scanniversaries with LIFE instead of ANXIETY.

Got it? Got it.  

I'll keep working on it. Practice, practice, practice.

My new mantra:
Continuing MRI's = Continuing FUTURE

And I say that deserves a cheers to both Stanley C. Bell and Raymond Vahan Damadian!

Now, if we can just find the next Smartypants Scientist(s) to find a CURE for Cancer, 

I swear I'd throw the biggest party EVAH! 

With unlimited cheers! and drinks on the house! (Shhhhh! Don't tell Steven.)

You heard it here first!

______________________________________________________________________________

And now a BONUS TRACK!

Introducing: JUNE'S WARRIORS - SUPPORT page!

 

We are so grateful for the all the expressions of support, love, and encouragement that we've received from friends, family, and complete strangers around the world. We are humbled and overwhelmed by the response to our current challenge. From the messages and the cards, the meals dropped off, contributions of organic veggies, cozy blankets and toasty & cute hats...the list goes on and on...
all of it has meant so much to our family.

In addition, some of our communities have spontaneously organized fundraising opportunities for our family. We thank you so much for your big, big hearts and effort, and thank you to everyone who participates/donates!

One of the things about my condition is that it is chronic (I prefer chronic to terminal, don't you? Although John Cleese said, "Life is a terminal disease, and it's sexually transmitted.") ... and unpredictable. We are fortunate enough to have insurance, however, we just got news yesterday that my MRI will be the first thing applied to our annual deductible in January.  Wheeeee! Ka-ching! My monthly medication co-pays also add up. And the reality is that, "standard treatment" for GBM is very limited at this time. Down the road, we also may be looking at significant out-of-pocket expenses associated with clinical trials and seeking alternative/supplemental care. In other words, we most certainly need and appreciate all the support.

I've created a new page on this blog: JUNE'S WARRIORS - SUPPORT to acknowledge and keep you updated on all of June's Warriors efforts. It will include not just opportunities to support our family, but links to support the often overlooked cause of Brain Cancer.

If you are already planning to come to our event next Wednesday, January 14th @ the Vine- our family is very excited to see you all in person! If not, click on the June's Warriors page and find out more. It's going to be bitchin'!

NO ONE FIGHTS ALONE!

The One in Which I Do Something Ballsy

I've got great news for you all! Are you ready?

I am a Long Term Survivor!*

*Now, before you get all excited and plan a party --- or decide maybe June has gone off the deep end...
Kiddies, I can hear you saying it now: "What the deuce!? How can you say that? You were only diagnosed in September 2014 and you haven't even had your first post-treatment MRI! [This Friday! <scanxiety butterflies!>]  

Have you lost your mind?!"

Whoa, Whoa, Whoa! Let's all take a deep breath, and let me explain...

The other day, I started to read this book that my thoughtful mother-in-law, Judy, sent to me....like, RIGHT away when she first heard the news about my situation.  It's called Crazy, Sexy Cancer Survivor, by Kris Carr.  And it looked really good, only I wasn't really feeling up to reading at all at the time. I was more into binge watching t.v. and movies on Netflix. So, it sat on my nightstand for a good long while I watched seasons of Newsroom, Girls, the entire The Tudors series.... Sorry, Judy! Love you! My brain just wasn't up to the task yet.

But in the New Year, one of my goals is to work on healing through the lens of the trifecta: Mind, Body, Spirit (more on that coming soon..) so I thought that this book might be a good place to help me tap into the whole Mind/Spirit part of things. And BAM, within the first couple pages, she had hooked me. She's infectious and positive and ...well, you can check her out online because she's kind of become a Big Deal and an Industry in a sense. Yes, she has things to sell. But don't let your cynicism get the best of you. [FYI: The world doesn't need more cynics.) She's got very important things to say. Go, Kris!

I'll even save you the trouble of googling that shit: Here it is on amazon.com.

One of the first things she says to do in her book is write down (yes, right there in the book - see, I like a girl who isn't afraid to mark up a book, too.) "I am a survivor. A Crazy Sexy Survivor and thriver!" And I did. And it felt good.

But then I got to thinking about this...in the Stage IV GBM community in particular, there's this on-going discussion and longing and quest to find Long Term Survivors, like the kick-ass Cheryl Broyles, whom I've mentioned before. But the term is not clearly defined, as far as I can tell. In other words, "How long is long?"

And then it hit me...if I can declare myself "a survivor", why can't I call myself a Long Term Survivor? As far as I know, I'm not violating any copyright laws. In fact, "long term" sounds suspiciously like one of those squidgy, judgement-call words. Like short or tall, fat or skinny...

You've all seen these e-cards....you get the idea!

I've decided Long Term Survivor is a subjective term, and I aim to do something ballsy. I'm going to claim it.  Long-Term could be months, years, decades...who the hell knows? Who's going to tell me I'm wrong? (I'm betting you don't have the balls to do it. And if you do, I'll just call you a "dick" and not listen to you anyway. Because I am ballsy that way too, my friend.) 

By using that term, I sincerely hope that it doesn't offend any Warriors who've been on the battlefield far longer than I. I honor you. I respect you. I want to BE you.  I have no idea what is in the crystal ball for me, but I do know that if I approach life as if I am a long term survivor, then I am living life as a long term survivor.  That's part of the whole Mind/Spirit Thingy, right? 

So, I ammended that page. Here it is:

And finally, to honor a recently fallen warrior:

Well said, Mr. Scott. Well said.

 _____________________________________________________________________________

P.S. To my son, Aidan: I swear I'll start reading The Grapes of Wrath right after I'm done with Kris Carr's book! I think my brain is ready to re-engage! Xoxoxo

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?