The One in Which I Describe the Family Holiday with "New Normal June"

Warning: I'm gonna write a lot and then reward you with some of the most adorable pictures you've ever seen. Trust me. It'll be worth it. Carry on! 
I've taken a full-week off from writing this blog - a deliberate decision to be "in the present" as much as possible and soak up the experience of being able to be with my whole family together at one of the my favorite place on earth...

Yes, well, obviously "The Beach".... (You don't get any points for knowing that. Sorry, Hermoine!)

But more specifically, Capitola, CA. This is the way you usually see it in brochures and stuff, but it's so much more than this.

The distinctive colorful view of Capitola Village

It's one of those places that you don't really even want to tell people about because then it will be even more crowded when you go.

Capitola is a mere 35 - 40 minute drive from our house in San Jose. I think it's a natural phenomenon that folks don't manage to go to their favorite local places nearly enough. But after my diagnosis and treatment in the last 3 months, my family rallied together and said, "What should we do for Christmas because we want to to do it together."

The planning involved not just my husband and my 4 children plus Son-in-Love, but my sister, Kathleen, (and her daughter's family), brother, John, (with his sig. other, Condee), and my father and mother.
Shout out: Mom & Dad were instrumental financially in making this grand gathering become a reality, and we are so very grateful! Airline tickets had to purchased and two full units had to be rented - one had to accommodate dogs! - and at peak, we were expecting 14 adults and 2 small children. And a partridge in a pear treeeeeeeee.....

The "Normal June" (which I shall begin to call the "Old Normal June") would have relished this task - full of moving parts, plans, and lists... Who will stay where? What extra supplies/beds will we need? Menus, grocery lists...it's a Type A's version of heaven, I guess.

But based on the physical impact of the last few weeks of my initial radiation/chemo treatment, it became clear that someone OTHER than me was going to have to handle the rental properties. I was not up to the challenge, and I had the good sense to say, "Please take charge of this!" - and so, Steven & John made that part happen in a flurry of internet and phone negotiations with the long-distance help of Mom & Dad, of course. Done.

As I recovered from my fatigue, I swung into Old Normal June-mode and started sending out emails with logistics, loose schedules, and menus. Google Docs were made and Evernote notes were tagged...and I thought I "was back" - I had this handled - with the help of Daughter April, who did a great job of updating things as plans solidified.

But the reality is, once we got there - things kept changing...with so many variables and people, my plans often were way off target. The good news - and it was really, really good news! - was that both Katherine and Sara were able to stay the whole time - which was not the plan in the beginning. The bad news is that every change meant I needed to adjust The Plan. And I got completely stressed out.

At the heart of it? Lack of control? Fear of disappointing the family because I couldn't handle it? Projecting in the future...fear that my New Normal June might not be up to the task anymore? Who is this New Normal June, and who invited her? Will she be sticking around, or is this a temporary thing???

Those of you that have been following my blog are probably staring at the screen right now slack-jawed - or yelling at me through it: "Have you learned nothing this past three months?" "What about all this poppycock about letting stuff go and knowing what really matters?

 I know. I know. I'm still a Ninja Warrior-in-Training, I guess. Or it's one of the things you never really master? I have no idea. All I know was...

About the fifth day, I had a little meltdown. Eyes turned toward me, asking what the plan was...when were we leaving for the next event. And I just broke down. And released the responsibility. I took control by saying, "I don't want to be in control. I CAN'T be in control." And it was really hard, and I cried, and then...you know what? The world didn't stop spinning. The family rallied, and everyone picked up the ball and ran with it.

Kiddies, I'm happy to say that this Ninja-in-Training was able to right her thinking and focus again on what really matters... And I don't need to tell you that when you do that...

The Magic Happens.

Like this:

FAMILY...2nd, 3rd and 4th Generation 

And family...2nd Generation Fremer Siblings

and family...1st and 2nd Generation Fremer Family

and Family...2nd and 3rd Generations - The Mirassou/Coffey Family (plus "the Bean")

The planned and posed moments were spectacular, 

but so were the unanticipated and unexpected gatherings. 

Maybe more so?

Daily walks along the water with Steven and the doggies - FYI: Capi (left) is named after Capitola

Tiger hat and beanie to keep our baldy heads warm in the morning chill

Goofy Brothers-in-law bonding

And...

Mom & Son swaying to '80's Pop music

Extra time with Sara thanks to coworkers covering holiday shifts...

Smiles and laughter and extra days with Katherine with April practicing her mommy skills!

Morning gatherings on the patio after our walks

Alone time with Seestor - who travelled for 2 days for basically a two day visit! 

Condee and one of the happiest boys you'll ever meet.

Matt & Dad - Multi-generational meetings and conversations

Siblings

and of course, Schmoopy Love!

Getting together the Family is work and complicated  - and yes, unpredictable, 

but there is no doubt that... it is worth it. 

Because it is MAGICAL. 

And just a thought from your in-house MFBCFNW-in-training: 

maybe the fact that it's not easy is part of what makes it magical?

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.

The One in Which I Decide that Caregivers are Superheroes - and Steven needs a Name!

It's been a surprisingly challenging week, this week, the week after my initial treatment of chemo/radiation has ended. There was a certain comfort to knowing exactly what our schedule would be the past six weeks of treatment. We were in a routine, and, it felt like we were actively doing something to TREAT my condition. Now, I'm supposed to "rest and recover", gradually allowing my brain to heal from the ...let's face it - trauma that it's been through. All while I watch the world around me swirl into a frenzy of activity related to the holiday season. And trying NOT to project into the future and think about the possible results of my next MRI in January....

Add into the mix that I have had to slow down due to the fatigue of the final seven days of radiation "boosts" and the cumulative effects on my speech, timed perfectly with Steven's semi-regular issues with his ears/hearing. You see, his ears get all plugged up from time to time ... which are not that great anyway. I know wives say that their husbands claim they can't hear them, but Steven has actually been tested. And the results indicate that his ability to hear high and low sounds are fine, but the range of the regular human speaking voice is compromised in one of his ears. Doesn't that sounds like a SUPER combination with someone who is experiencing speech challenges and has to repeat herself anyway to be understood?! 

Let's just say that there have been a few moments of .... "frustration" and leave it at that. Okay, I may have been a  little snippy with Steven this week at times when he asked me to repeat myself. But damn it! He's never snapped back! I would say that he has the patience of Job, but then I would feel compelled to Google that shit and fill you in on the origin....

 But I can confidently say (without any further research) that he has much more patience than Steve Jobs had - and I think all of us can agree on that without even having to look it up on the interwebs, or read/watch one of his many biographies.  (And I don't even have to throw my Apple employee friends under the bus on this one. You're welcome.) I'm not a hater. I'm just saying that's not one of his "defining characteristics", shall we say?

But I'm not talking about Steve Jobs. 

I'm talking about Steven Mirassou. 

My Schmoopy. 

My Rock. 

and now my Caregiver.

"Caregiver" - that's the term that's widely used to describe the friend or family designee who is primarily responsible for the patient in cases of serious illness. It's a term that seems so inadequate. Today, I simply want to honor him and all the caregivers out there, who took on or are taking on that role of caring for a critically ill family member/friend. This is my attempt, in some small way, to public acknowledge and express my gratitude, knowing in my heart and soul that I will fail miserably at meeting the depth and breadth deserved.

Almost immediately after my prognosis, I identified myself as a Ninja Warrior. It embodied the strength, power, and agility I thought I'd need to begin and continue this fight. And it's served me well so far.

But I've thought long and hard about how to identify Steven - and other caregivers. There is a certain symmetry to calling them Samurai, but I don't think that quite matches...and I don't want to be lazy. Certainly, the Samurai role was to serve another, and they were badass warriors. And they had to do so more honorably and with far more constraints than a ninja warrior (no #freepasses). But, at least for centuries of history, Samurai were chosen from the upper echelon and drafted into those positions as public servants. (Kiddies, if you're actually interested in a long, drawn-out history of samurais..you know what to do!)

Plus, the samurai uniform isn't nearly as a cool as the ninja warrior, no?

Ninja vs. Samurai uniform - It isn't even a contest! Come on, now!

But, the real problem is that the Samurai title doesn't really capture this: CHOICE. 
I'd be willing to bet that all the caregivers out there would say that they had/have no choice. They would say, "Of course, I have to do all the difficult tasks that I have in front of me." But that is simply not true. They volunteer for that role and can duck out at any point. And that's part of the specialness of any caregiver - that they see no choice when others do. They CHOOSE to stay and slog through the hardest shit, keeping it together... Many times - MOST times - trying to continue to do whatever it is that they were doing before and adding on probably 99% of the things that their "charge" used to be able to contribute (at least in the beginning)...

And I'm talking mentally, physically, spiritually, financially...in too many ways to imagine.

It's exhausting even to think about it.

So, what do you call someone who sees someone else in pain, in need of support...and it's clear that it's not a one time deal - that they are making a committment...and they rush in instead of back away? What do you call someone who agrees to step in, stand side-by-side, through it all, no matter what?

Isn't that the definition of a hero? ....or is it a superhero? (Now THAT'S something that's worth googling.) Okay, here goes...according to Cambridge Dictionaries Online:

hero
: a person admired for bravery, great achievements, or good qualities

superhero
: a character in stories or movies who has special powers, such as the ability to fly, that are used for fighting evil or helping people
: is also a person whose actions or achievements are far greater than what people expect

 Hmmmm...both would work nicely in this situation, wouldn't they? But I'm going with SUPERHERO!  Because caregivers definitely have special powers in my book. and they definitely rise above in their actions and achievements far greater than what people have any right to expect.

Plus...Superheros get cool pseudonyms. If I get to call myself a Mother Fuckin Brain Cancer Fighting Ninja Warrior (#mfbcfnw), then Steven HAS to have at least an equally badass and cool name ...and hashtag! DUH!

Let's see....

• Super Schmoopy is TRUE, but doesn't sound badass enough.
• Bald Hottie is also TRUE, but that's just a superficial observation, isn't it?

I think I need your help! Submit your suggestions in the comments below or Facebook, Twitter, email, or text them to me, we'll put it to a vote. Together, we'll come up with the perfect Super Hero name and hashtag for my Rock, my Schmoopy, my Caregiver! Submission deadline: Sunday, Dec. 21st!!!

P.S. Wine Man has already been used...(Halloween 2010) - Sorry, Schmoopy, but it was too good to pass up!

 Special love and admiration going out there to all the Caregivers/Superheroes out there today and everyday! 

P.S. Sorry for being so snippy this week, Steven! 

You are my Love and my Light and my own personal Superhero 

(even when you're deaf as a doorknob).