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

____________________________________________________________________________

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 Unpack the Love

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

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

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

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

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

What do you think? Circa 1980's?

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

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

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

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

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

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

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

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

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

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

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

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

And so many other treasures of positivity!

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

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

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

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

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

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

The One in Which I Share (some) of my Hokey Playlist

Awkward hair - scar side #thisisreallife #braincancer mfbcfnw

I revealed in my last post that I'm slightly very hokey. I think I used to be embarrassed about that 'cause I would never be "cool", but I've long ago embraced my inner hokey-ness (Kiddies, I think I just made up that word, so don't use it and blame it on me. But you can tell people that you learned from ME that "cool" is not that important in life.) Hokey-ness is a secret ingredient that fuels my Ninja Powers, after all.

I've also admitted that I have a weakness for emotionally manipulative tunes. Most of my family looks at music in a whole different way.They dissect lyrics and have gigabytes of tunes on their computers. Let's just say that my playlists are NEVER played with anyone else in the car...okay, that's not exactly true. Sometimes Steven will tolerate them briefly.

So, they're really my driving or walking alone playlists. Many of them, I made when I was going through radiation treatment because they will pipe in your own music - which helped me a lot to remain calm and focused.  Like I said, now that I'm done with radiation, my playlists are pretty much for my solo walks or drives. I recently sneaked one in while driving with Steven.  I played the first three songs for Steven,  and he said, "What are you trying to do? Make me cry?" (For the record, I did make him cry, but he cries at commercials and stuff, so it wasn't on  purpose or a big triumph or anything.)

On my walk yesterday, I was listening to that same playlist, and  I thought I'd share those songs with you -- even though, yes, they're definitely not cool. They make me feel inspired and empowered.

 The first song is "Fight Song". I had seen a video posted online, and it inspired me to make a new playlist that I call "Cancer Fighting". You have probably heard this song on the radio, especially if you have a 'tween/teen girl in your house. But I don't, so this version was made during Nurse's Week by a Pediatric unit. It is indelibly associated with that for me instead of adolescent angst.

Not all the lyrics fit my situation, but I always turn the music up when it comes to the final chorus:

This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
'Cause I've still got a lot of fight left in me
Now I've still got a lot of fight left in me

The second song always reminds me of the commercial/movement #likeagirl (shout out to H.S. friend, Allison Amon, & Chelsea Pictures for that one!) 

I'll hold my head high
I'll never let this define
The light in my eyes
Love myself, give it hell
I'll take on this world
Yes, I'll stand and be strong
No I'll never give up
I will conquer with love
And I'll fight like a girl

These first two songs speak to me, even though not all the lyrics "fit" my situation. Like many songs, they capture the essence of what I'm feeling. When I hear this one, I think, Fuck yea! Cancer doesn't define me! and I'll continue to #fightlikeagirl 

But Steven's eyes remained dry until song #3 came on. This one always reminds me of how lucky I am to have my Schmoopy in my life. Because I know he feels in his heart that he's "Gonna Love Me Through This".

 

When you’re weak, I’ll be strong
When you let go, I’ll hold on
When you need to cry, I swear that I’ll be there to dry your eyes
When you feel lost and scared to death,
Like you can’t take one more step
Just take my hand, together we can do it
I’m gonna love you through it.
And when this road gets too long
I'll be the rock you lean on
Just take my hand, together we can do it
I’m gonna love you through it.
I’m gonna love you through it.

(I don't know how long he lasted before Steven started crying because I was already reaching for tissues myself in the first verse.) It always reminds me of the first two weeks after my diagnosis and surgery. Our emotions were really raw and I was still having 8-10 focal seizures a day. I lay on my side in bed and I would signal to Steven when I felt another seizure  coming on. He knelt by my side and talked me through it, knowing just what I needed - tissues and a fan on my face - and his hand running across my head as he whispered, "You're doing great. Just breath deep...." 

He's been there every step of the way, though. We've been through tough times since then, and I imagine we'll face more tough time again. But I know he will always be there, loving me through it.

Hokey is okay sometimes, I think. So is crying. Thank you, Schmoopy, for being my Rock and loving me through this.You are definitely one of the other secret ingredients that fuel my Ninja Powers!

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.