The One in Which I Talk About Rainbows & Unicorns (That's a Lie.)

I'm kind of speechless that this image even exists...Google rocks!
http://jess4921.deviantart.com/art/Behold-A-Rainbow-Unicorn-Ninja-89652879

This post has nothing to do with Rainbows or Unicorns. It's actually a pretty serious post about life & death. But when I googled "rainbows and unicorns", this is what came up, so I had to share it with you. You're welcome.

I've mentioned I've been struggling lately - emotionally - and I reached out a hand to this organization called cancer CAREpoint. [One again, I have to say that if  you are a cancer warrior or caregiver in the San Jose/Bay Area, they have so much to offer! Don't wait like I did to connect with them!]

So, I had an appointment this week with one of their professional volunteers - people who have private practices and donate their time to this organization to benefit cancer patients/survivors. I don't want to say that much about the nature of my appointment, (not 'cause I'm embarrassed, but because I want to respect her anonymity). It was the our first time meeting together one-on-one, so we talked about my experiences so far and what I needed from her.

At one point, she tentatively dipped our toes in the water and asked me, "Have you thought about your own death?" These people deal with patients with terminal diagnoses all of the time, so she said it much more delicately and expertly. But that's the first time anyone has so directly asked me that since my diagnosis. Let's just say that it's not the kind of thing you would bring up at a dinner party with someone who had a terminal illness. [Imagining drunken idiot slurring out, "So, how does it feel to know you're probably gonna die soon?"] Actually, with all the other well-meaning, but insensitive things that I have heard, it's kind of surprising that I haven't heard that one yet.]

But it was a relief to have someone ask me - and I could tell she sensed that right away. [I told you she was a Professional!] I realized that in some ways I was still very much in denial about my diagnosis, partly because my loved ones don't want to even think, let alone talk about the possibility of my death. Completely natural. But I'm in that place now. It you read my previous post, we're in that gray area now with my treatment - like, the doctors don't have any real answers about what to do next. In a lot of ways, it's all like a crap-shoot and pure Dumb Luck. Hence, my recent transition from 'I got this!" to "I ain't go this!"

Since you're not a Professional (or a drunken idiot, as far as I know) and wouldn't ask,.. The answer is: Yes, of course I've thought/think about my death.FYI: I'm not afraid of my own death, in the sense that I worry about what's going to happen. I didn't have a classic Judeo-Christian upbringing , so I don't think I'm going anywhere - no heaven, no hell. [I was going to say, "I hope I don't offend anyone out there," but you know what? My beliefs are just as valid as yours, so almost-apology rescinded. I am proud of my spiritual beliefs. I think they make me a better person and isn't that what it's all about?]

Just in case you missed it, if we go way, way back [in the Way Back Machine - DUH!], somewhere I said here in this blog that I believe that God is in all of us, not a man or separate entity, disconnected "above" us. The sum of  Goodness of us all is what I call God. I try to live my life with integrity, tapping into the Goodness within myself and spreading it around through my thoughts and actions. The more we do that - as a collective group - the more GOD shines through in our lives. I have never felt God so strongly as I have in these past months, with so many of you thinking about me and praying for me. I feel it, and it's a beautiful thing.

But it's difficult - especially for our closest loved ones - to think about our deaths. And there is even a superstitious quality to it, like if I start to think about it that I'm "giving up" or "bidding death to come".

Let's set the record straight: I do not want die any time soon. But I realized in that relief I felt with this woman's question that it's been in my mind...I would be crazy not to be thinking about it in my current situation...and I needed need to talk about it. She said something that hit the nail on the head with this analogy - Kiddies, I'm giving credit to her, although she may have picked this up from someone else or a book herself (She is a cancer survivor.) - Once a person has been told "You have cancer", it's like you've been handed a boarding pass. Of course, all of us think about death and know it's coming sometime in their future. But I have a boarding pass. Some people have boarding passes for journeys that are imminent. I'm grateful that I am just on "standby" at the moment, shall we say?Someone can say, "Yea, but we're all gonna die sometime!" But do you have a boarding pass?

So, it's like the OPPOSITE of Southwest - You DON'T want to be in that first boarding group, A. And no one is jockeying for position to get that extra leg room. [Okay, I think I've officially exhausted this analogy, so let's move on...]

This does not betray or negate all my efforts to be the Outlier and the Ninja Warrior who is going to continue to fight like hell to be a Long Term Survivor and have as much time as possible here with my family. No one knows when it will take my life. And I will continue to do the same things I've been doing - everything I can to delay my death. But if I were a bettin' man, I would say someday in my future, eventually, this GBM will guarantee me a seat.

Back to my conversation with The Professional:  I responded, "Of course, I think about my death sometimes. But no one really wants to talk about it." And that, my lovelies, is why I've been struggling lately. [cue tears]

Once I voiced this aloud to this woman, it was a game changer. It's taboo to talk about it in public. It makes people uncomfortable. Some of you are considering bailing on this particular blog post already because it makes you cry or protest. I can see you through your web cam. (Not really. but I freaked you out for second, didn't I? Busted!) But I will persist. This is my truth. I will not censor it to avoid offending anybody. We each must deal with what we've been given in our own way. In other words: don't tell me how to handle my terminal illness diagnosis, please. And I'll respect your desire to turn a blind eye if you must. Thanks. [Plus, I have a #cancercard and a #boardingpass now! neener-neener-neener!]

So, what do I think about my own death? As I said, I'm not afraid of what comes next for me. What makes me sad is thinking of my children, and grandchildren (Autumn and those to come),

Gratuitous picture of my granddaughter in her Disney Princess outfit Grandpa Steven picked out for her.

...and of course, my best friend, Steven. Just last night, we celebrated our "baby" Sara's 21st birthday. I am so proud of my children and the family Steven and I have made together. I think about missing birthdays, and Christmases, and Steven's Beloved Thanksgivings, births and weddings...I will be missing but not "missing" it, if you get my drift? What makes me sad is for my family having "that moment" where they reflect upon me not being there...and -  miss me.

But if you look back on my belief system, I think I WILL be there. In the heart and souls of everyone who is thinking about me. My hope is to leave a legacy that people remember - for it's Goodness. When people say that, "I know my father is here with us, looking down on me proudly, " I always thought it was a little creepy, like ghosts, watching over us. To me, our loved ones that have passed away are not over us or below us or among us...they are IN us, all the time. It's the legacy we leave.

The Professional and I spent a lot of time talking about the yin & yang of life & death, how they are connected naturally. She encouraged me - not to dwell on death - but begin to turn my head and look at it. Not avert my eyes in denial, which causes much more stress and anxiety. Instead, start to look at how death is inevitably connected with life.

The other day, Steven and I were on one of our notorious walks up The Hill. In case you haven't heard, it's dry here in California. I know that's hard to some of you to imagine, given the onslaught of rain you've had, but it's bone dry.

The hill is completely filled with wild grass,, and the landscapers are trying to get a handle on it because it's a huge wildfire hazard, but they can't seem to weed wack it down fast enough. This one day, we had a little breeze going through in the late afternoon which had pulled several of the shoots out of their "socket" and they were swirling in front of us in a loose circle. We stopped to watch with fascination, and Steven said, "We should video tape this." (which if you know Steven, is NOT his usual M.O.) But it was so cool, it was almost like magic. We could have fumbled with our cell phones, but  I said that it would never capture the magic of the moment. So, we just stood there and watched the dried grasses dance together, eventually settling on the other side of the path.

I was thinking about this moment on my walk yesterday and realizing that's a perfect analogy to what I'm trying to say about my death. The dancing, dried grass stalks are dead, and yet they contain hundreds...thousands? of seeds that will pop up next season. I hope I'm there to see them. In fact, I'm putting that on my Goal board: walk The Hill with Steven and watch the young buds start to pop up out of the ground. But if I'm not around anymore, and a magical swirl of dried grass "dancers" appears in front of Steven, I'm guessing that he will probably think of me. And in that way, yes, I will be there with him - but not in a creepy, ghosty kind of way - more of Good/Godly kind of way.

The One in Which I Talk About Continuing Chemo (Temodar)

Disclaimer: Use of Temodar will NOT result in this kick-ass blue color hair. 

I had so little experience with doctors and hospitals before my cancer. The only other hospitalizations I had were for the birth of my babies - and I only did that three times - not four - because we had Katherine at home with a midwife. (For real. Yes, on purpose. And it was my best birthing experience, FYI) But I'm not writing to open a can of worms about that subject...

I'm afraid I might be opening a can of worms on this other subject, but....what can I do? I'm just laying myself out there, speaking MY truth. Which is the whole point of this blog.

Every other experience I've ever had with a doctor - for myself or my children - I went in, I had an examination, the doctor diagnosed me, and he/she told me what to do. Whether it was prescribed medication or a humidifier or ice or the RICE diet...So, this whole GBM experience has thrown me for a loop. And caused some a shit-ton of serious anxiety.

I've followed the "Standard Course of Treatment" or the "Gold Standard" in the U.S. right now with treating a Grade IV glioblastoma multiforme. I was fortunate enough that my tumor was in an area that was operable, so the first step was resection. Then 6 weeks of radiation (5 days a week) and chemo, Temodar (7 days of week). This was followed by 6 months of Temodar, 5 days on and 23 days off. I also have something about the make-up of my tumor that supposed to make my cancer cells more responsive to the Temodar ... so, that's good, right? That 6th cycle was in the month of June...

and then...

About two months ago, I started hearing from my doctors that they were thinking of continuing the Temodar cycles another 6 months: cycles 7 - 12. (Wha'?!?!) My Neuro-oncologist said in a phone consult in June, that after the 6th cycle is a period of "negotiation". (I wondered what that meant exactly...) And when we met with her last Monday, she reiterated that it really was OUR choice if we wanted to continue with the treatments or move to a "wait and see" approach. I would still have my MRI's every other month - and there would be no medical intervention (surgery/chemo, clinical trial, etc) unless/until there was a change on the scan [i.e. a recurrence]. She was comfortable with "graduating" me from the Temodar cycles. [By the way, she said three of the four NO's at UCSF would recommend the continuation of the treatment. (It doesn't take a genius to figure out who the fourth doctor is, does it?)]

In the last two visits with my local oncologist, he characterized himself as "aggressive" and recommended the additional 6 months. (He works closely with the UCSF NO, so he already knew what her recommendation would be.)  The Temodar appears to be "working" - meaning, we're not seeing new growth. (note: We are not seeing shrinkage either.) But  - as I've said more than once in my blog -  with GBM, where growth is the norm (practically inevitable), and it's usually fast and furious, no growth is a good thing. And just so you know, if/when we stop the Temodar, we wouldn't go back to it if I showed signs of growth. They both said it makes no sense to "take a break".

I just wasn't expecting to have a decision so major plopped in our laps like that. It's required a lot of researching, talking, and reading, and crying...

I know there are people out there that opt for NO Western/Modern Medicine and opt for Alternative Options from the get go. Others trust only in the science of medicine and don't explore alternatives. For them, the decision would be easy. What has made it so very difficult is that I believe that I should take the best that "Western/Modern Medicine" has to offer, and do our damnedest to augment that with what we can as patients: the stuff we have control over.

I've made it clear from the beginning that I believe in an amalgam of both. I let the doctors tell me what is available - my "best options" with scientific evidence to back it up, while I use all my resources to do everything I can do to compliment that - and I believe it makes a difference. The focus on the whole person: the mind, the body, and the spirit. Nutrition, Fitness, Mindful Meditation, Yoga, Tapping into the positivity and love in me and the people around me...You've read it/heard it/seen it from me for the last nine months, This is nothing new.

And suddenly, the doctors are saying, "Yea...this whole modern medicine part...you're going to need to decide if you want to continue this another 6 months or not..." Wait...What?!?! Because, guess what! They don't have a fucking clue at what really works beyond this. Because there are no long-term studies and completed clinical trials regarding this issue.  I mean, there are some promising stuff coming down the pike, but they have no real academic, completed Phase III trials that say THIS is more effective than THAT. (Except Temodar/radiation treatments) Part of what's so complicated is that there are so many variables. There are ~120 different kinds of brain tumors, but let's just focus on GBM. Each patient has a unique set of circumstances - age, fitness level, where the tumor is, what the genetic makeup of the tumor is... I've read and read and read...I have to take breaks because it makes me want to cry. I can't avoid the numbers. I have to keep reminding myself that I'm not a number! Let's just say that it's a sucky situation and leave it at that.The good news is the numbers are getting slightly better. I'm still working on being the Outlier, though...

MAYBE the Temodar is the reason I have not shown growth at the tumor site. Or maybe it's one of the 100 things I do every day to help my body heal?  Or maybe it's a combination of things? Who knows? I can tell you who doesn't know: my doctors. ANY doctors. In the world.

Oh, if only he were really a doctor...but I digress....

This is some heavy shit. "Quality of Life' - there's a phrase that gets knocked around a lot with people with chronic/terminal illnesses.. It's a decision of: do the negative side effects of a treatment make life so miserable, it's not worth it?

Steven and I have spent hours talking about this decision, but in the end, he said, "I can't answer that question for you. I don't know what it's like..." I know we'll be revisiting this conversation again in the future. This is some intense, scary shit. If I think of it as a life-or-death decision, I just cry and am useless. So, let's not do that, k?

Right now, the "quality of life" question is a no-brainer. I decided to continue with the treatment. Yes, I am physically weaker, and when I stop taking the chemo, it will take some time to build up my strength again.  I researched the hell out of Temodar and current practice - and although it's all over the map  - there is a lot of precedence for continuing through 12 months - even longer, if it continues to be effective, and I am still coping well with toxicity (as measured by blood work - platelet counts, etc). But we'll deal with that when we come to it. The fact that I have no shrinkage WITH the Temodar makes me wonder if I didn't have any medical intervention at all...

Maybe this is TMI, but I'm willing to live through a couple of days per month in bed with: nausea, constipation, and extreme fatigue, if that means that I have more months with my family. It also requires that we are strategic about plans leading up to and just after any cycle. And when I told my oncologist about our trip to Disneyland and the accommodations and adjustments we made, I said, "We're learning all the time about how to live with cancer." He looked me sincerely in the eyes and said, "That's what your life is going to be like. Forever." 

There's a technical term for that. It's called: No Bullshit.

No guarantees, but I know that I will leave no stone unturned. And if/when Temodar stops working (Kiddos, sad to say that it seems to always stop working eventually), we'll have more difficult decisions than this because ...did I mention that the doctors can't tell us, "Just take two pills and call me in the morning." ?

That's what it means to have a terminal disease without a cure.

P.S. I noticed that I used the word "cry" a lot as I'm rereading this post. #cancercard #freepass

The One in Which Schmoopy & I go to the Happiest Place on Earth

Not long after I was dx'ed, had my surgery, and started to get the gist of my prognosis, I told Steven that we needed to start thinking of the things we wanted to do and DO THEM. You know the saying: "You better get busy living or get busy dying!"

I refuse to call it a "bucket list" because that implies that we are doing these things because we think I'm going to "kick the bucket" soon. (Where the hell did that saying come from? Hang on. I'm gonna Google that Shit!) Huh! Interesting! There's not a consensus. What?!You thought I was going to tell you? Geez-a-Louise! Don't be lazy. I've got better things to write about...

Like.... one of the things that popped into my mind pretty much right away when I thought about my "To Do List" (See! Doesn't that sound much less ominous than "Bucket List"?) was to go to Disneyland with Steven.

Spoiler! We went to Disneyland last week!

 I'm a big fan of Disney - yet, we'd only went once with the kids ... such a fun trip! They may feel a little deprived about that, but it was a deliberate decision to wait until they were old enough to really appreciate it. And we saw plenty of evidence this week of babies and toddlers being dragged around the park, crying and whining. I've decided that going to Disneyland with a baby is only a slightly better idea than going to Las Vegas with a baby. (Don't get me started on that...)

This time, The Planner in me came out (She's so annoying sometimes!), and I downloaded The Unofficial Guide to Disneyland 2015 and the app for my phone to check wait times for rides. I was sooooo prepared! Only my subconscious - or brain cancer - either one (You decide.) played a cosmic joke on me because in the last minute rush to pack the car for the airport, I LEFT MY PHONE AT HOME! Now, those of you who know me understand how bizarre this is. But it was such a blessing. It was really like I left The Planner at home, too, and I already said how annoying she can be. Plus, I think The Planner is becoming more and more unreliable. with the short term memory loss and stuff. (Sssssh! She might hear us, and we wouldn't want to hurt her feelings or anything...)

Honestly, I'm so glad I didn't have my phone there. I saw so many people looking through the lens of a phone or an ipad during the parade and fireworks, annoyed because people in front of them were blocking their shot. Put the damn thing down and watch it NOW! It's happening NOW! And who the hell is going to watch that video of the fireworks display later? It's not the same. You are in Disneyland! BE. IN. DISNEYLAND.

I confess that my phone is a very convenient, always available camera - so I have far fewer pictures than I normally would. My mom & dad gave me a Canon Rebel for a birthday present this month (Woot! Thank you!), but I am still learning how to use it. I stuck to "automatic" settings so that meant mostly daytime pictures outside. Part of that is because I'm not a scofflaw and when they say, "No flash photography", I listen! <eh hem!> ( You know who you are, Scofflaws!!!)

Waiting to explore the Pirates' Lair - Argh!

Ruh Roh! (I can hear my oldest daughter already saying, "You guys are such DORKS!"Yep! We let our Dork Flag fly freely!

Anyway, without the phone and the Planner, we were FREEEEEEEEEE!!!!! Free to just wing it! Well, not exactly because the brain cancer insisted on coming no matter what (BRAT! Way more annoying than The Planner), so we needed to make accommodations for it. What-ev. Life is about adaptation, isn't it?

And we're learning more and more about the BRAT and how to travel with it:
1) The BRAT gets tired, just like any toddler you would take to Disney. Except I can't take it out and put in a stroller, feed it treats, and yell at it when it has a meltdown - (which seems to be the strategy of many parents when their brats - I mean, sweet, lovely children  - have the expected meltdown in the mid-afternoon.) 2) The BRAT needs a lot of water. I mean, A LOT. We learned that keeping a close check on water intake was one key to success. 3) The BRAT needs to rest. And we need to listen to my body when it's saying, "Yo! Can we sit down a bit? Or go back to the hotel and lay by the pool and take a nappy, nappy? Thanks!" Finally, 4) My body needs calories to counteract the effects of the BRAT. I know that we walked a LOT. And we made sure we stopped and had a snack every hour or hour and 1/2. We even stopped at Whole Foods after we left the airport before we checked in to the hotel! Sure, we indulged in some off-program" food, but overall, we feel better when we eat better. (See, even though The Planner didn't make the trip, she left some helpful advice!)

The single best thing that we did was to suck it up and admit that I have a disability. The first day, we went into the City Hall and armed with a letter from my oncologist (which they didn't ask to see, FYI), I declared that I am battling brain cancer and the fatigue from my treatments (and probably the BRAT, too). So, I needed some accommodations. She checked to see if I needed a wheelchair (no), and then set me up with a program that allowed me to avoid those long lines. Thank you, Disney!  Anyone who has a disability knows that is a hard thing to do - to publicly declare that you aren't "normal" and can't do all the things that other people can do....that you used to do. But in the long run, it's better to just own it and focus on what you CAN do. It's way more fun. Trust me!

We rode about 3 - 4 rides each day and, the rest of the time just soaked in the ...well, I'll just say it, no matter how hokey it is.... the MAGIC of Disney. We all get to be children at Disneyland! And see the world through their eyes. Where else can I rock those ears with that bow?? The characters walk by and smile and wave. Princesses and Chip & Dale waved at ME...(or my general direction). I'm a big believer in whimsy, and

"Disney = Whimsy on Steroids." 

If Disney wants to use this as their new slogan, they're going to have to pay for it. <grin> That's gold, Baby, pure GOLD!

One of my favorite moments was when we were watching the new nighttime parade for the 60th Anniversary, and this little girl was right over Steven's shoulder yelling ...no...shrieking in his ear with excitement as she waved at each character on each float. "Ellllsssssaaaa! Elllsssaaaa! "Woooooodyyyyy!" Wooooooddddyyyyy!" Imagine wearing headphones and having that projected at full volume in your ears, and you'll begin to get the effect. (Note: this is probably way down on his list of favorite moments...) But she actually thought with all those lights and music and other shrieking children that Belle and Ariel and Mickey could hear HER. And in her heart, she went away with that memory.

My mom made me promise to go on "It's a Small World" and sing along.

Steven clearly loved that, too. <must be read in an extremely sarcastic voice>

I even made him continue another Fremer family tradition which is to pose next to a statue and imitate it as well as you can.

What do you think? How did he do? The guy on the right is way cuter than the guy on the left, though, don't you think?

He's such a good sport! And it was so fun surprising him with the picture from Splash Mountain. As we were about to go down the big dip, he said, "Put your hands up!" Little did he know that I had other plans...

I'm in the back, sneaking a kiss on his neck with my Minnie ears on.

I got to get a little something for Autumn Elizabeth to introduce her to The Magic, but I can't say what since I haven't given it to her yet. And I knew exactly what I wanted for my souvenir of this trip. I was so excited when Steven found it, I (almost) shrieked in his ear. With the Magic of Disney, I got to be a member of the Explorers' Club, too.

If you don't know the significance of this, that means that you've never seen "UP". And you need to stop what you're doing and  watch it - at least the first 10-15 minutes - RIGHT NOW! 

May we many more adventures together, Schmoopy!

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 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