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....