The One in Which I Talk About the Power of Art and Whimsy

My parents with some of their grandbabies, a long, long time ago!

I have a confession to make: I'm not a "real" Californian. (FYI: I know most of you already know that. Just sayin') I'm a transplant from the East Coast. Truth is, most of the people living here are transplants - I could Google that Shit, but I don't really care all that much. It's a way to preface the rest of this: I moved here in 1992 because my husband IS a "real Californian whose family has been here since the Gold Rush - (the Pellier-Mirassou Side.) My parents were devastated when "HE moved us across the country - their daughter and two grandchildren". You see, my parents are amazing grandparents and we saw them very, very frequently before we moved. In fact, they made the decision when we did move that they would never let 3,000 miles get in between them and their grandchildren, so they cooked up a plan to make sure they see them every 6-8 weeks. With my dad's frequent flyer miles from all his business, they made it work.  They still have very close relationships with all are kids, and it took a lot of planning and work, but it's been awesome!

Getting to my point....

I remember one time sitting at our dining room table not long after we have moved, chatting with my father about how much he HATES California, and part of his reasoning was that Californians were "too optimistic". This comment has stuck with me. He was a born and bred New Yorker, and I grew up (mostly) in semi-rural New Jersey. How did "optimism" become a negative? (Maybe he will leave a comment below to explain what he exactly meant? Or he could share it with me privately, and I'll let you know, k?)

I don't know if I would paint a view like that about residents of CA, but I have been thinking a lot lately about making sure my life is filled with positivity, joy, and beauty. If ever there was a time for me try to be optimistic, this is certainly one of them. If you've been friends with me on Facebook, you know that I'm very close to cutting the cord there. I'm so tired of seeing and reading all the negativity and ugliness. It makes me sad. We all have this forum to share thoughts and ideas with so many people. What are you using it for? Just reflect on that a little bit, and ask yourself, "Why?" I'm not just talking about the political vitriol. Lean in to the screen for a second and I'll whisper: You know what? The people you are sharing all your very different political/spiritual beliefs are NOT going to change because of anything you write or share. Sorry to burst your bubble, but that's the truth.

But  I'm not talking about puppy or panda videos.  I know some people hate those, too, but I am a firm believer in the Power of Whimsy. Thus all the hours I spent on Pinterest looking at baby animals in my early days of recovery from my craniotomy. I've been reading a book called Radical Remission that goes into the science of the Power of happiness/positivity and healing. I highly recommend it to any other warriors out there.

Come on! Doesn't that make your heart smile?

Lately, though, I've also been compelled by the Power of Art. 

A couple blog posts ago, I made a comment about how you can make your own life. Here it is:

The One in Which I Explain my Paradigm Shift. I think one of my defining characteristics is my belief that we have a LOT of control of our own destiny, and in order to have things go your way, you have to think about how you would do it and then....DO IT. That seems to fly in the face of my father's belief about Californians, doesn't it? Because I was like that when I lived on the East Coast, too. I believe very strongly in living life purposefully. And alas, Dad, I think I was steeped in that belief from my earliest childhood...3,000 miles away from California.

My current situation has heightened this belief even more. Lately, as I contemplate my mortality more and more, and I think about how I want to spend the rest of my life ... (Hey, Kiddies, you know what? You can't sit up suddenly from your casket and shout, "Mulligan!") But guess what? I have some control over what I'm doing right now while I'm alive! Imagine that! We all do. And I call BULLSHIT if you try to convince me that you don't. No, you can't control everything (like these fucking cancer cells in my brain), but I CAN think about how I want to spend the time I have left - and plan my time so I can do some of that. 

So, let me just wrap this sucker up - I, personally, want to live in (see above) positivity, joy, and beauty. DUH! And I purposefully am planning things that give more of that - yes, spending time with family and friends, but also surrounding myself with things and places that make me happy, make me giggle, make me smile, my heart beat with joy. I've noticed that I'm spending much more time looking at art - literature, dance, music, paintings, and photographs and just STOPPING on a walk through the vineyard to notice a bunch of wildflowers. In the lucky times that I get to spend with my children and granddaughter, just looking at their faces, and listen to them laugh, and thinking how beautiful that is. How lucky I am. 

I'm not going to take a long time to get to the flip/downer side of this, but this is part of my point: I really, really, really don't understand why anyone would CHOOSE to do the opposite. Why are so many people out there focused on the ugly, evil, sad things in life? What. The. Fuck?  I'm not saying that we don't ever acknowledge it's there, because we need to do that sometimes in order to make changes. But don't wallow. That's all I'm saying. Yea, there is stuff out that sucks....oh, I don't know. Maybe like.....FUCKING BRAIN CANCER? But I prefer to look and think about this:

Or this:

Hey, this isn't even gratuitous! This picture of my granddaughter fits in with the context! Yay!

I could go on and on, but you get the idea....

So, here's a thought: the next time you feel compelled to go on a rant on Facebook (or whereever, for that matter - the parking lot, or your office lunch room?), instead,  read one of those classic novels that you've always wanted to read, but "never have time". Or go for a walk and look up at the sky or trees,  down at the grass or flowers. Or find out where your nearest art museum and go there when you have some spare time. 

You don't have any spare time, you say? Look in the eyes of your husband, wife,boyfriend, girlfriend, parent, grandparent....you know what I mean. Is it late at night? tip-toe in the bedroom and gaze at the sign of life - the breathing in and out. You know what? That's a beautiful thing, too. And a privilege.  

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P.S. I want to give a shout out to two FB friends from high shool days, Paul Liberti and Craig Shofed who inspired me by using Facebook as a medium to spread art and beauty.

The One in Which I Give Props to My Friend, HOPE

I'm playing my #cancercard liberally here as I find that my memory is declining a skoche <---(that's a real word that I learned from Steven, and I'd say to Google that Shit, but it took me some time just to find out how it really is spelled. What does it mean? How 'bout a smidgen?)  Anyway, my point is that sometimes I can't remember if I have already told some things to some people. I would be smashing as an Associate in the Department of the Redundancy Department, don't ya' think? (See, I think I already used that cheap joke sometime in a blog post here...#freepass. Hellooooooo! It's me. I have brain cancer. (#sorrynotsorry if I start an ear worm with Adele's latest breakout hit. Will you forgive me if I don't make another parody video and post on youtube? I thought so!)

Back to the point of all this. I know y'all or most of y'all know that I have been through a pretty shitty phase when I learned the MRI results showed disease progression. I wrote about it feeling like I had been punch in the stomach, but after some more processing, I think a better analogy is more like ...when someone a person (or dog) knocks you completely on your ass by running into your legs full-force. And at the moment, you have lost your ability to stand up, let alone walk away from where you are. After about a week or two of laying in bed and finding myself sobbing with what seemed to me like no new trigger. I was like stewing in a melange of sadness and anxiety.

I have been talking with a counselor pretty much since my diagnosis, and that's been super helpful. But my Self looked around at my crumpled tissues and lack of productivity for several days and declared, "We're gonna need a bigger boat." (Reference to scary movie of my day, Jaws. I've actually never seen the whole movie because I'm already afraid of sharks. True Story.) After some of this got really boring (and a little scary), I said, "Self? Self, I think you might be actually depressed. Self, I think you need more help."

As the first step, I reached out to my medical team and asked for a referral to a psychiatrist - very common for patients in my situation. Go figure! (Kiddies, I hear you saying "DUH!!" even if you're whispering it behind my back. I forgive you. You're right.)My new doctor prescribed a medication to help with my symptoms. Part of the problem wasn't just textbook "depression", but is insomnia because I couldn't stop my mind from spinning, thinking about what's going to happen next, and as you all know - that's a DANGER ZONE for someone in my situation. With the new meds? So far, so good.

I also said, 'Yo'! Self! You have an ginormous SUPPORT SYSTEM, and they are there to SUPPORT you. DUH! Reach out to someone! IDIOT!" This hit me while I sat in the CVS parking lot waiting while Steven picked up one of my many meds. So,  I picked up my phone and called one of my support system. I'll allow her anonymity - and say emphatically that just 'cause I did't call you, doesn't mean that I don't consider you part of my support system.

The person on the other end of this call...She is a fellow Warrior who battled Stage IV breast cancer. She had been where I am right now. We have the same sick gallows humor. BONUS! It sounded like we were talking a language that only we understood for the moment. She knew exactly what to say even though I blubbered in a way that she probably had NO IDEA what I had actually said. One thing that really popped like a bubble in my mind...she said, "You had a shitty, shitty week last week. Brush it aside and move on. You are starting a new week." Kiddies, if you are a caregiver for someone right now, take notes. Because that was magical. Acknowledgement and validation of my pain, fear, anxiety...wrapped in a big ball. And yet reminding me that you can move away from that. It can be different.

There I was, stuck in a hole, and she helped me out of that. Thank you, thank you, thank you Anonymous Warrior Friend! It reminds me of a TED talks video that my daughter once shared. It's a good one!

I've learned a huge lesson from this experience. I have so many lovely, supportive people in my life. Ask for help. Reach out for those hands . They want to help you through those hard times. So many people offered to help! But I'm used to being the helper, not the helpee. I guess I'm a slow learner.

Today is the best day I've had since that MRI Shock Day.  The worst part was that I've had a lingering feeling like I couldn't get back emotionally/mentally that I was before. The MFBCFNW. Where was the WARRIOR? Was she being a slacker? What was missing? Today I realized what I didn't feel: HOPE. Anyone slogging through these kinds of situations, has an old friend, HOPE.

Let me clarify this: I don't believe that having Hope when you diagnosed with a terminal illness is the same thing as Denial. Our old friend, HOPE, is the warm, reassuring friend that can embrace you when you need and say, "I'm here for you. I'll always be here for you." Today, I looked around and there was our old friend. It's like the personification of the positivity and love that my friends and family send to me through their thoughts and feeling. It flows to me and envelops me., embracing me with warm, reassuring arms, whispering, "I'm here. I"m always here for you. Don't forget that...No matter what anyone says, anything about statistics and odds and discussions about life spans...I'm here for you."

In my family , we have a tradition.(I think this comes from my maternal grandmother.) When someone is in a crappy situation, someone else might pat them on their head and say, "There, there." Sounds so simple, but in that small gesture and phrase you get: acknowledgement, validation, and the warm embrace of "I'm here for you."

I know it's complicated for someone who has never experienced the situation of being diagnosed with a terminal illness. I can't speak for everyone, but I will say for myself. I've been thinking a lot about what I really WANT so I can pass this along to you that are confused. If you want to help the ill continuing to feel HOPE, please don't act like their fate is a "done deal" - even if they are saying things like "I know I'm going to die..." Don't feed that part of their thinking. But the flipside is: don't say things like, "You've got this." or "You are going to beat this thing." I know, it's hard and counterintuitive. And again, I'm just speaking for mySELF, and I never said it all made sense.

So, what can you do or say?

• Hold them or pat them on the head and say:"There, there." or....
• "I'm here for you. I'll always be there for you."

It's very reassuring to know that our old friend, HOPE, is still there.

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Obligatory, gratuitous picture of my granddaughter, Autumn. She has been sick for over a week and still oh, so cutee!

The One in Which I Talk About Legacies & End with Some Shitty News (Sorry!)

I mentioned in my last blog post that, several weeks ago, I received an email from the Tri-Valley YMCA - a very unexpected email - asking me if I was interested in participating in this year's Dr. Martin Luther King Fellowship Breakfast. They wanted to honor me with a Legacy Award. You could have knocked me over with a feather. How do they know anything about me? Who was considering ME worthy of this award?

I have since found out who knew about me. Hi, Kelly!!! I hope everything is going well with you!!!!

Anyone who has faced their own mortality has thought about what legacy they will leave when their gone. I believe I've written a little about it here on this blog somewhere. I could take some time and look for it and reread it, but.....#freepass! I've always been a little confused by this concept. In fact, I Googled that shit because I wasn't even sure of the definition of the word, "legacy". ( I thought that might be a good place to start, no?) I looked at all the major dictionary-like websites and all them seemed to have the primary definition as relating to something monetarily valuable. For instance, the Meriam-Webster.com "entry is this:


Full Definition of legacy
plural leg·a·cies
1: a gift by will especially of money or other personal property : bequest
2: something transmitted by or received from an ancestor or predecessor or from the past<the legacy of the ancient philosophers>

I guess I always thought of a LEGACY as something BIG and impacting a lot of people. Especially a lot of money or something that's very valuable. (Think: Bill and Melinda Gates Foundation or Zan Zukerberg Initiative.) I would never be in a situation to build that kind of monetary value, so I've spent a lot of time over the last year thinking if there was something BIG I could do - start a movement or turn the tide somewhere that would make a difference for a lot of people. With all the radiation and chemo and ...well, the business of living with cancer....Was there time? Or has my time run out?

This past Monday, I found out that although I might never have a national holiday named after me, (Hey, I'm okay with that! Although three day weekends ROCK for teachers! haha!) ...I knew people that I don't know "in real life" read this blog, but I found out that I am making a difference in other  peoples' lives. So.....this award is called the Legacy Award. I had to shift my thinking. The idea that my thoughts, and words, and ideas that I was sharing here on this blog was actually INSPIRING HOPE...that in itself, makes me so happy and humbled  - wrapped in a big ball of PRIDE.

I have had many people through the months, convey the idea that I was "inspirational" or "inspiring"...I knew that was a positive thing and a compliment, so (of course) I always said, "THANK YOU!" But honestly, I wasn't sure what exactly that meant... Guess what? I just Googled that shit, too! And what I learned first is that sucky thing that happens from the time that we're old enough to "look it up" - the definition contains the word or base word right in it. So, that's not helpful at all. Like:

inspirational

in·spi·ra·tion·al
ˌinspəˈrāSH(ə)n(ə)l/
adjective

providing or showing creative or spiritual inspiration.
"the team's inspirational captain"

Thanks, dictionary...that makes absolutely clear...NOT!

So, I drill down to "inspiration", which goes a little bit like this:

inspiration
noun
1.an inspiring or animating action or influence:
I cannot write poetry without inspiration.
2.something inspired, as an idea.
3.a result of inspired activity.
4.a thing or person that inspires.[emphasis mine]

So (because of the teacher in me) I went to the base word: inspire , and you want to know something cool? I'm not going to list all the definitions for "inspire" - (Kiddies, that can be some homework for you, okay?) Geez-a-louise! Don't be babies about it! Here's the link to one page!  ,<----click here
I just thought that one part just leaped out at me:

inspire
verb (used without object), inspired, inspiring.
12. to give inspiration.
13. to inhale.

I love the visual of someone reading my blog posts and inhaling. Take a deep breath of the love, and support, and positivity that there is in the world. And take a deep breath and KNOW that we all are going to leave a legacy whether we were lucky enough to be part of the Silicon Valley boom or not. It's not about the Mon-ey, Mon-ey (<----sorry for the earworm, millenials!)

It's the most valuable thing on this earth: Our Lives. This is our GIFT.
Receiving this Legacy Award was one of the proudest moments for me. And yet I was so nervous walking up to the stage to accept it, my knees were knocking together. Thank goodness I didn't have to speak then. They came out to our house and video-taped Steven and I ahead of time, and edited in to a little "video package" to run before my acceptance of my award.

I would remiss if I didn't thank my Schmoopy for all the kind things he said in this video. And he offered to escort me and hold my hand when I had to ascend these two steps on to the stage. What a gentleman! I managed to make it up there without pulling a Jennifer Lawrence or anything, though. Phew!

Proud moment, Monday, January 25, 2016

 Warning! Bummer News Ahead: The day after this picture was taken, I had an MRI on Tuesday. The news is not good. There is a significant change in between the last scan and this one. The scan was reviewed by the UCSF Tumor Board, and they believe there is progression of the disease. We just spoke with the neuro-oncologist from UCSF and have an appointment tomorrow to discuss our options. The tumor is inoperable and radiation & Temodar are no longer appropriate. We're entering a New

Take a big breath with me, please, and let's say it:

 Life is happening right now. Don't miss it!

The One in Which I Remind Myself of My Commitment to Me

Something totally and humbling ended up in my email box a couple weeks ago. I was informed that the Tri-Valley YMCA was interested in giving me an award at their Martin Luther King Jr. Fellowship Breakfast. Each year, they pick one of MLK's quotes, and it becomes their theme for the event. This year, the quote is:

“Everything that is done in the world is done by hope.” Dr. Martin Luther King, Jr

and the theme is: 

Inspiring Hope.

I don't know how exactly my name popped up while the board was making their decisions about who would be honored (there are three awards: for an individual, a company, and an organization, I believe), but I'm truly grateful and humbled about the decision.

The breakfast is scheduled for next Monday - yes, MLK Day was last Monday, but they have had better attendance by moving the event, since so many people go away for the "real" holiday three-day weekend.  [Click HERE <-- if you are interested in attending!]

In preparation for this event, they sent someone out to interview Steven and me for a little "video-package". This was a brand new experience for me. The interviewer was lovely and sweet, and made it easy as possible for me to talk, even though it was a little surreal, talking about myself that way. One of the first questions he asked me has been rolling around in my head since then, though.

He asked me how people would describe me. I immediately asked, "Now, or pre-cancer?" It was up to me to decide. Hmmm...I think pre-cancer, almost everyone would include some reference to "Type A", or "controlling", or a "planner" in any description - as have I. It's been a defining characteristic for me for a really long time. In fact, I think I was pretty proud of that - and maybe a little smug at times, if I were honest. (And kiddies, if you've read my blogs before, you know I also describe myself as pathologically honest, so yes, "I was smug about being Type A".)

And I've had a lot of changes since my diagnosis and year-long treatment. I've had lot of lessons learned about how I can control some things, but not a lot of things. For instance, I can't control this fucking cancer in my brain.(Damn it!), but I can control how I deal with it and live my life with cancer in my brain. DUH! That's the major message I tell myself and holler on high to anyone who will listen.

And I believe that is a BIG, BIG, BIG! message:

Focus on what you can control, and make the most of it!

However, I am no longer smug about being Type A/controlling. In fact, I have decided that we are the worst type of personality to be inflicted with brain cancer. It's some serious mind-fuckery (I might have made that word up just now, but "Worry about yourself!")

Okay, this is off-topic, but if you've never seen this video, I could watch it over and over. Still makes me giggle. And I think giggling and whimsy should be a big part of life.

We want to control and plan EVERYTHING, and our brain cancer laughs in our face and says, 'Oh, yea??" Not only can I not control the brain cancer, but I have neurological deficits because of the disease that make it harder to just plan and organize things  that used to be second nature. So, if you're type A like me, I suggest you don't have brain cancer. Well, I actually suggest that none of you have brain cancer, but you know what I mean.

But I don't have any control over that.
So, what to do... what to do?
I focus more and more on the things I can control, mainly: ME.

The next section is going to seem like I've gone off-topic, but I promise you, it will all come together in the end. I promise. It always does, right? Or almost always does... Hey, let's not forget about the #freepass, too! ANYWAY...

I have several rings that I wear every day. I'm a big believer in "anchors" or symbols that when you see them, it reminds you of something in particular. It's kind of like that string people put around their finger to remember something, only mine are a little fancier - one's gold (my wedding ring that Schmoopy put on my finger 25+ years ago). That reminds me of the commitment that we made to each other that day - and yes, what a GREAT decision that was! The second is on my right hand, made of platinum (oooo-la-la!) that Schmoopy gave me for our 10th anniversary. And again this reminds me of that commitment to my best friend and love-of-my-life, and ten beautiful years spent with him and our growing, amazing family.

But recently, I added a couple more rings. I had a ring set that I had purchased P.C. (pre-cancer), because my weight was up and not both of those previous rings fit on my fingers. Now, with all my weight loss, I have to be careful with my wedding ring and get it fitted correctly soon because I've managed to fling it off my newly slimmer finger a couple times when gesticulating wildly.

 I ran across this ring set in our move and thought, I wonder if this will fit on my middle finger now? Sure enough, they did.  I've decided since I've reached a new phase in my cancer treatment - after "graduating" from my chemo cycles. (I'm not making this up. My neuro-oncologist used that phrase. "graduated".) So, I slipped those rings on my finger, next to my wedding ring and made a commitment to myself. These are a symbol of my commitment to myself, to continue to focus on everything I can do, everything I can control to keep myself healthy. To Live Life and Find the Fun!

Symbols of the commitment to Steven on the left and commitment to ME on the right.

Thank goodness I don't have to actually speak at this event! I would be freaking out about now! But thank goodness I have this place to speak to you all! Oh, and one of the other questions was "What inspires you?" Of course, I said, Steven first. I don't know how I would make it through this year without him. And of course, my children and my baby grandchild also inspire me every day, even if I can't see them every day anymore. They are always on my mind!

This red flag is a symbol of my children. If I've already explained that to you in this blog somewhere...#freepass! If not, it will have to wait until another time. Xoxoxo! Love, Mom!

But there is no doubt that YOU all inspire me as well. Thank you, thank you, thank you for continuing to Inspire Hope in me! Love, June AKA The Outlier #mfbcfnw

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OH, and I almost forgot! Silly me!

Gratuitous picture of my granddaughter, Autumn, 10 months old! She's going to be running around soon!

The One in Which I Tell Y'all About the Relay for Life in Livermore

Team picture (actually at the end of the event) Theme: pajamas! Mine say: "Lazy Days, Ninja Nights" Rawwr!

Livermore Relay for Life, 2015

A few months back, Kate Gazzuolo (part of our SKW family) sent me an email asking if I was interested in joining their Relay for Life team benefiting the American Cancer Society this year. They've been doing it for about 5 years  - her immediate family and several members of the Steven Kent Winery Family. She totally understood if I was not up to it, but they wanted me to know that they had changed the team name in my honor from "Wine Girls" to "June's Wine Girl Ninja Warriors". (Have I mentioned how much the Steven Kent Winery Family ROCKS?  Probably not enough! Well, they ROCK!) I told her that I would love to join the team, raise some money, and play it by ear about how much I could actually walk on that day. Done deal! 

  

Katie Gazzuolo - Our Team Captain, and Cindy Turchino - Tasting Room Manager & Professional Pirate

I set up my page on the American Cancer Society website and solicited donations - and once again, family and friends - June's Warriors - humbled me with their generosity and support. <grabs tissues> [note to self: buy stock in Kleenex] Big Ninja Warrior kisses & hugs!!!

I had never participated in a Relay for Life event (I know many of those Warriors out there have - so forgive me if I bore you by describing some of the details - at least for this one.). The first thing I did was check in. If you are a Survivor (Yay, me!), you got a stick with a sign saying how long you've been a survivor. The two survivors in front of me said with confidence "37 years"...then "40 years". When it was my turn, the young girl who was volunteering to write on the signs looked expectantly at me. "um...9 months." She paused a moment, looked at the adult seated next to her for guidance - who sweetly just gave her a reassuring nod, a signal as if to say: "Well, write that down, honey!" I thought I was going to win a prize for being the least amount of time as I looked at the Survivor Signs around me, but then the beautiful Linda Santos and Sandy Casey showed up. Her sign said, "8 months". Dammit! I don't even win THAT prize? Well, as it turned out, neither of us would have won that prize (Kiddies -I'm totally making this up. There is NO prize for that distinction. I have to be honest.  I just don't want you to be bitterly disappointed if you ever go to one of these events and have just been diagnosed or something.) Anyway, we spotted a man with "7 months" a little later on. But many more inspiring signs with decades of survival!

I love Steven & Sandy's beauty pageant sashes for being Caregivers! At least Sandy has the pageant stance down!

The Relay isn't really a "relay" in the truest sense of the word. At least one person from the team has to be out on the track, walking laps, at all times for the 12 hours, but there's no baton passed or anything. We had some lovely volunteers that came by to help and walk some laps for us - Thank you so much!!! I even had a former student come up in the middle of the night to volunteer! I'm ...really speechless about this. But I could cry some more if I weren't out of tissues....We love you!!! and NEEDED you! 

Especially since some people on our team got involved in an hour or two of playing a "cornhole" game...which apparently means something completely different to most people than it did to me. I always called that game Beanbag Toss (throwing a beanbag into a hole in a board). "Cornhole"? Well...Google that Shit or use your imagination, but that is NOT what I thought that meant. Come on! I know I'm not the only one out there...There were themes for all the laps - which my team captain assured me was not necessary - but I am actually a lover of themes [Let's just say "hokey" has been used in a sentence about me more than once.] and chose ones that I wanted to participate in...especially the Super Hero one. Hello??? Who doesn't want to dress like a super hero? Apparently, 99.9% of the participants. But I wore my Ninja Warrior costume with pride!

That's right! Don't fuck with me, Cancer! 'Cause you don't know who you're dealing with! Ninjas are stealthy like that!

In addition to the funds we raised online, each booth had raffle items and other ways to make money. Our team had this beautiful basket with a wine tasting package of local wineries, as well as a table of used books.

Notice Steven in the background (look for the bald head), "working hard", reading one of the books he found on the table. That's alright. Caregivers deserve breaks for sure! Love you, Schmoopy!  Xoxoxo

The team also had a bunch of karate boards with CANCER written on them for people to karate chop CANCER.

Sharyn Bell, karate chopping Cancer's ass while Katie bravely holds the plank.

The other theme time that I really wanted to be a part of was the Luminarias. People decorate paper bags with names of treasured loved ones that have passed away or people currently Warriors living with Cancer. They light the bags along the track (with glow sticks) at dark and you walk along, reading the names and reflecting on how many people that Cancer has touched.  It's very powerful when you see them all lined up, each representing a father, brother, son, mother, sister, daughter...[You know what, Cancer? You suck! #sorrynotsorry]

Ninja Carol honored me with this luminaria. So sweet! 

 I had ordered my bag online for Jeannie Mullins - I didn't realize that we could decorate our own, so a volunteer did it ahead of time. It's a little sloppy, but Jeannie would understand...she taught 2nd graders, after all!
Thank you to my wonderful team/family for inviting us to be a part of this!
And our little but mighty team raised over $6,608!  The whole event raised: $136,458.98

Disclaimer: Almost all of the photos in this blog post have been stolen downloaded from someone else's Facebook page. Sharyn Bell, the Gazzuolo family, Cindy Turchino... thank you for being such good photographers and recording these precious moments. I have found that, since my diagnosis, I forget to take pictures because it distracts me from being IN THE MOMENT. Maybe it's the cancer. Maybe it's the sense of urgency to be present? Which is kind of the same thing, if I think about it...Whatever. I'm using my #cancercard to justify stealing other people's stuff. k? #freepass

The One in Which I Want to Make a Difference

Warning: The following blog post contains language which is intended for Mature Audiences only.  (I would have to count how many F words I used to actually rate it R or PG-13, and "Ain't nobody got time for that!")  Discretion is advised.

This is a true story. Anyone that was a junior or senior at Hopewell Valley Central High School in Pennington, NJ in the early-80's will back me up on this if they were a witness. My memory is a little fuzzy on the detail, partly because of my age, partly because...ummmm...I have BRAIN CANCER. Hello?! (#freepass) But mostly because I'm really not sure what was going on that day. The best I can determine is that I was a witness to someone's psychological meltdown. So, some of the specifics might be inaccurate, but remember what my mom and dad told me: "Never let the truth get in the way of a good story." [P.S. Yes, that means that you should always be slightly suspicious about any stories they tell you.]

Back to the story:

I never realized before that our mascot looks kind of like a rabid dog, no?

When I was about 15 or so, the whole high school student body - actually, I think it might have been juniors/seniors -  were ushered into the auditorium because the principal...or ass't superintendent? (fuzzy, unnecessary details) ...was going to address us. So, we took our seats, and there's this man at the podium, wearing a suit, looking really serious, ready to speak. Only, when he started talking, he didn't make sense...except that it was clear that :1) He was having some kind of mental breakdown, and 2) He wasn't going to have his job after that day. He was rambling on about something or other...The part that I do remember quite clearly is that he said:

"25% of people are going to require psychiatric care sometime in their lives....Look to the left of you." (Everyone looked to the left.) "Look to the right of you." (Again, everyone reflexively looked to the right, albeit with a baffled expression on our faces.) "If it's not one of them, it's you." [Kiddos, I'm pretty sure his math was faulty... ] Shortly there after that, he was politely escorted off the stage by some school district personnel and I don't think I ever saw him again. I swear I'm not making this up! Who would make something like this up?

I was thinking about that experience recently as I was looking at cancer statistics this week. Not that mental breakdown part, but the odds of being afflicted with something.This is Brain Tumor Awareness Month, but as I said, Cancer is cancer is cancer. And everyone has been/is currently/or will be touched by cancer sometime in their lives. That's not some crazy rambling fact from a poor person having a very public mental breakdown. Honestly, I wish it were. That's some hard, cold facts. For example, if 1 in every 2 males will have cancer in their lifetime...Male readers: it could be YOU. or your father, or your brother, or your grandfather...but anyway you look at it,  you are going to be touched by the pain and anguish of dealing with this disease. All of you. Sooner or later.

Female readers: Apparently, we have a 1 in 3 chance in our lifetime of getting cancer.  I've already been "touched by cancer" in my family  - twice, actually. My maternal grandmother and her sister (my great-aunt) both died of cancer.

There's my Grandma Gobinski with most of her grandchildren. I think this may be the only time the plastic covers weren't on the sofa cushions.

 This fact is always written in my chart when I visit a new doctor. So, I'm thinking I've done my whole odds thing, right? But then when you include my good friends that have been diagnosed with cancer... my mother-in-law and father-in-law who are also Warriors (I'm not going to blab about the specifics because that's their stories to tell)...it seems like I've already reached...no, FAR exceeded the statistical average... But then, son-of-a-bitch! I get diagnosed with brain cancer? [It's just like me to be afflicted with the weirdo, pretty rare kind of cancer. Always gotta be "different", huh, June? j/k] 

Seriously, though. Don't we all think, deep in our hearts and minds that someone else in our lives has already fulfilled our statistics? "It's not gonna be ME!" I've talked to other people who have been diagnosed with cancer, and it's very common to have that thought early on in the process: "Why ME?!?!" But the real question is, "Why NOT ME?" Unless you have some super, special force field around your body to prevent it , I hate to break the news to you, but...you are not safe. I'm a Mother Fucking Ninja Warrior, for fuck's sake! I thought I was safe. No, that's not exactly true. The truth is (...it sounds moronic to say now) but I didn't think about it at all. And I can say with absolute certainty that the news was the most shocking, surreal thing that I've ever experienced. So, I say to you again, male or female: Anyway you look at it,  you are going to be touched by the pain and anguish of dealing with this disease. All of you. Sooner or later.

Well, that was bummer news, huh? But I have HOPE, and I know you do, too.  I believe that the collective intelligence and ingenuity of researchers working together around the world, we will eventually find a CURE for cancer. Selfishly, I'm hoping it comes sooner rather than later. These stable MRI's are great for right now, but I'd like to have the fucking cancer cells completely out of my body, FOREVER, at some point ....while I'm still alive. (In case I didn't make that clear enough.)

So, I've mentioned this already, but I wanted to dedicate a whole blog post to this. I am participating in a Relay for Life team. And it would be totally bitchin' if you could donate some money to the cause.  It's pretty simple. Just click on the link and follow the instructions.

 June's Wine Girl Ninjas' Relay for Life

You can donate to any of us on the team. And feel free to stop by and cheer us on!

Saturday, June 27-28, 2015

9:00AM to 9:00AM

Livermore High School

600 Maple St, Livermore

Oh, and pay no attention to whether I've "reached my goal" or not. We will have "reached our goal" when we don't have to think about the statistics any more because we've found a CURE. I'd love to see that happen in my lifetime, but if it doesn't work out that way, I will know that this Mother Fuckin' Brain Cancer Fighting Ninja Warrior did something to help because she has the most amazing Warriors standing beside her.

 No One Fights Alone!

Love,
June Xoxoxo
#mfbcfnw

_____________________________________________________________________________

FYI - At some point soon, I will address the fact that May is Brain Tumor Awareness Month - and not all brain tumors are cancerous. Many are "benign" which is a misnomer in some ways because people can die - many do - from "benign"brain tumors.

The One in Which I Really LIsten to Todd, the Hawaiian Surfer Dude

First of all, I have to thank everyone who rallied around me after my last blog post and offered gentle, kind words of encouragement and support. I suppose you had every right to "pull a Cher" and just tell me to:

If you don't know this cultural reference, I'll give you a hint: (you still have Google it) but add "Moonstruck" to the search.

Instead, with your love and support, I've pulling myself back up onto the "board" and trying again to find my balance. 

During my surfing lessons with Todd the Hawaiian Dude, one rule he taught us is this: once you have your feet planted on the board -  you need to focus on something on the horizon - some point that would be in the direction you wanted to end up. If you focus on something else...damned if your board doesn't veer off course and send you in the THAT direction. It doesn't guarantee that you are going to end up where you wanted - but you have a hell of lot better chance.

In Maui, I may or may not have had one run when I was distracted by this little boy on a board in front of me...and almost ran into him because I was focused on HIM instead of where I was supposed to be going. I can neither confirm nor deny this story. The only one who could rat me out tell you the true story is Katherine. <slips Katherine a $20> We're all good here, right?

Pop Quiz: Who in this picture isn't focused on where he/she wants to go? DUDE!?!

With that in mind, and my lack of ability to "stay on the board" this past week, I thought it made sense to look back and see what I've been focusing on lately. And as the first step, I returned to the "scene of the crime" and reread my last blog post.  The first thing noticed is that I used the phrase "in control" to equate with "balance" ... And I'm clearly afraid of NOT being control - which in my mind, means falling off the board.

What I'm hearing in my head is Todd, the Hawaiian Dude/Surfer Instructor, asking me, "What were you FOCUSED ON?"

Well, that's easy for me to tell you because I have a lot of evidence of what's going on in my head. I write most of it down! Let's have a little look-see, shall we?

I shared a picture on my "June's Warrior's" Facebook page yesterday. Let's call this Exhibit A:

When I'm not blogging, these are the journals I write in the early morning  - when I'm not screwing around on FB.)

This is a little window into my world in the early morning, while everyone else sleeps. I have my private time with my various journals, my blog, and anyone on the East Coast who happens to be on Facebook.

Let's examine Exhibit A:
First, in the upper left picture is a simple 2015 calendar. As a teacher, I usually buy the Academic Planner types that go July - June, and I DID have one of these in my purse this year. But I told Steven that it freaked me out that my calendar "ran out" in June 2015, so we replaced it recently for a "normal one"- I wanted to be able to write the things we're doing all the way until the end of 2015. It's funny how little details like that can play with your mind, no?

About a month ago, I bought a three-pack of moleskin journals from amazon. The one in the upper right is my Private Journal. It started out as a Gratitude Journal - and I do write about the things for which I'm grateful....but I've found it helpful to just have a place to let loose with no rules. So, it pretty much is a spewing of all the thoughts, good and bad, in my head. It's more of a clear-my-mind exercise. Which is why is PRIVATE. #nojudging! #suckitmariannewilliamson #sorrynotsorry #freepass

The second journal (bottom left) is a customized "To Do" journal. I used to love the Franklin Covey Planner - and I still like the concept - You set purposeful daily goals based on long-term goals that focus on your core principles & values. Phew! That was a mouthful! But having spent mucho dinero on various configurations and sizes of the planners through the years, I've found The Secret: you only need.... <drumroll, please!> paper and pencil! Voila! I just saved you a ton of $$$! Score! Now, if you want to know the whole process behind it, you might need to plunk down a few nickels at the kindle store to read about Covey. Or just google that shit..because the concept has been around for EVER. 

The final journal is more of a notebook in the classic sense. I take notes from books, documentaries, and the internet to help learn about my disease and health/wellness. I've divided my Health/Wellness into the classic trifecta: Mind, Body, and Spirit. This notebook contains the little "smoking gun" of truth about what I've really been focused on.

I've been reading/taking notes as much as I can about:
My Body: 

• How can I nourish it to help it heal from the intense treatment I've just gone through, as well as boost my immune system for the months ahead of chemo cycles? 
• What can I do/how much can I exercise my body to support my healing and strength?

and
My Mind: I've been voraciously reading about my disease.

• What can expect from my current Standard of Care?
• What are the latest breakthroughs in treatment of GBM? 
• What can supplements/alternative care are available to support the standard of care that I am receiving right now?

But then my mind goes beyond that, to....

• What happens next if/when this current standard of care stops working effectively. 
• What do survivors do when the 5/23, Temodar cycles don't result in stable MRI's anymore.
• What if...what if....what if..

Ummm...   June?   Where the hell is your focus???

And I had a Big Fuckin' A-Ha Moment. You know that 2015 Planner that I talked to you about in the beginning? Steven has been trying to have conversations with me about things that are planned 4 to 6+ months in advance, and I've been avoiding these planning sessions. Ironically, I've been assiduously avoiding the 2nd half of 2015 altogether.

I'm so afraid of the (potential) rocks ahead that I'm not lifting my head up and looking at the horizon. I think I'm doing a (reasonably) good job at appreciating the MOMENT...at being grateful for what I have in front of me RIGHT NOW. (See, Marianne Williamson! #notsorry!)  That's not scary at all. It's beautiful and magical and sometimes even awe-inspiring.  

Mommy-to-Be, April, 8 months pregnant now!!!

I'm going to be grandma sometime in the next month or so!!! What?!?!? It's so exciting!!!  

 
But in order to "stay on that board", in order to find the delicate balance of living with cancer, I also need to be casting my eyes on the horizon, too, and focus on where I want to end up.

Once I realized my mistake, I went to explain/confess to Steven. I said, "You know why I haven't wanted to talk about these trips we have coming up and do the planning with you? I've been afraid that some medical emergency might happen while we're away, and I'm scared about what we would do. Especially being 6 or even 12 hours away from my local medical team.  Steven, you know why I have been avoiding talking about these plans? Because I'm afraid of what we'll do if something goes wrong."
<And I used the "s" word!>
"That's just STUPID!"
(Kiddies, you thought I was going to say something else! I can tell! But I've been a 5th grade teacher for more than a decade and "stupid" is the "s" word for most of them. Isn't that cute?)

Yes, I can plan. While recognizing that I have limited control of the ultimate outcome.  Shit happens. (Shhhh! Don't tell the 5th graders!) But I can't control everything. And I certainly shouldn't FOCUS on the worst possible scenario. Listen to Todd the Hawaiian Dude, people!

So, I made a goal to spend more time focused on the direction I want to go on the horizon. I think that's maybe the Spirit part of the trifecta. The part that people use the words faith or hope to describe. It's not that I haven't thought about it, or wrote about...but I haven't ACTED on it.

SPIRIT:

• One of the first things on my list is to work on Meditation. I've been reading about it, and taking notes, but I haven't attempted to DO it. (Okay, I attempted to do it yesterday, but I ended up napping. It's a beginning, though, right?!) 
• I also know that I will be better off if I join a support group of Cancer Warriors/Survivors. I have the dates/times written in my notebook, but I haven't gone to one yet. Now, I have written it in my planner to attend a group the 2nd week in February.

I hope that Todd would be proud of me. I am up on the board, enjoying the feeling of the water rushing beneath me and sun on my skin, but I'm also looking ahead at the horizon and trying to steer in the direction I want to go. I might veer off course anyway, but I'll probably enjoy the ride a lot better if I let go of the fear of what could go wrong along the way.

P.S. I need a 2016 Calendar so I can write down: "Celebrate Autumn Elizabeth's First Birthday!

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 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.