The One in Which I Talk About my New Goals

I know it's completely normal to feel fear when one is diagnosed with cancer. I've read it, heard it, and experienced it. What one fears is not the same for everyone. That's seems normal as well. I remember my friend, Jeanne, who recently passed from pancreatic cancer, expressed a lot of fear about the pain in the end. That is not the fear that I try to push to the dark recesses of my mind. Maybe I'm naive, but I believe there is enough modern medicine out there for me to avoid a lot of pain in the end. If I'm wrong, don't feel the need to set me straight. This is one of those situations where ignorance is truly bliss.

As much as I try to avoid it, I do have fear that bubbles up to the surface.  My fear is that I'm going to miss so many things in life by dying "young". REALLY young people who are reading this blog are thinking, "What?!?! Is she off her nut? She's 50 years old! That's not young!" But older people understand what I'm saying. I'm a mother of four children, adults (mostly): 28, 24, 22, and 20. But I've got so much of their lives to see. I've been married 25 lucky years to my Schmoopy, but I thought I had at least double that to fill our lives with memories. I fear missing the weddings, the births, the family gatherings at Game Nights, Thanksgiving and Christmas, trips with my Schmoopy...or just sitting out in the evening around a fire pit and talking and laughing...

I swear that my tumor must be near some area of my brain that controls emotions because I cry at the drop of a hat, and I can't seem to control it. I mean really CRY - the kind of crying where you can't even talk so that anyone can understand what you're saying. And I breathe deep when it starts to come on, thinking that I will get my words out before the waterworks start, but it's hopeless. I cry like that at some point on most walks with Steven. I used to apologize, but now he tells me it wouldn't feel like an official walk if I didn't cry at least once. I told you our walks are like my therapy!

So, know when I write about this subject, I'm a mess: tears streaming down my face and strangled sobs in my throat. #sorrynotsorry

<grabbing tissues and wiping my face dry>
<Deep Breaths>

When I was first diagnosed and (mostly) recovered from my surgery, and I decided that I was a Mother Fucking Brain Cancer Fighting Ninja Warrior! (Rawwr!) I took a bulletin board out of the garage and re-purposed it. I hung it up and thought about everything that I wanted to experience in the next 6 months - things that I was fighting for.

As cards and email and letters poured in from June's Warriors, I hung those up around the board and I regularly gazed at that corner as I was getting ready for the day.

(Kiddies, Here's a little tip for you: you gain a lot more time in your day if you shave - or lose- your hair. I must save 40 - 60 min. a day not having to fuss with my hair anymore.)

This weekend the family went down to watch Katherine graduate from UC Santa Barbara.  As I was waiting for Katherine to walk down the aisle for her commencement, I realized that this was the last event that I had pinned to my bulletin board. As I started to tear up, I tried to express this to my father and husband (whom I was sitting between), and after several attempts to talk through my blubbering tears, I got the message across. My father leaned over and gave me a big hug and kiss on the head. (A moment I wouldn't ever want to miss - see how that works?)

Both of them said the same thing: "Better get some new goals up there ASAP!" As soon as I got home from UCSB, I started my latest chemo cycle, so I'm not all that spry, but the more that I've been thinking about it, the more that this assignment seemed too pressing to wait until my chemo cycle was over on Friday.

Yesterday, I unpinned each card and message from all of you - reread them and smiled (yes, and cried - #freepass!), as well as my pictures of my goals and tucked them in a basket that I now have in my "meditation corner". The positive energy emanating from that basket must be off the charts!

By the time I finished that, I had to lie down, take some anti-nausea meds, and binge watch some more "Orange is the New Black" and nap. So, I woke up this morning with a blank bulletin board. That seemed like really bad karma, so I set to work importing and printing my new goals.

New board includes room for more goals as I think of them...

The first time I did this, I was afraid to go too far beyond 6 months. Why? I'm not sure. I guess that my prognosis was so shitty that I couldn't get my brain to dream beyond that. This time, I've gone into next year. My last goal up on the board is to attend Autumn Elizabeth's first birthday. But I think maybe I'm allowing the "F" word (FEAR - what did you think I was talking about?!) to interfere with my goals. And what do I really have to lose by planning for something in 2017, 2018? Wouldn't it be something if I were to witness Autumn's first dance at HER wedding?

April & Coffey's first dance - (Notice my parents in the background.)

A ninja warrior can dream, can't she? Yes, she can!

The One in Which I Explain How Brain Cancer Made Me a Hugger

June's Brain Cancer 101:

I am going to get a technical here in the beginning, so things will make more sense later on... Sorry! I won't charge you tuition or anything, so no worries about student loans, etc. And it ends with hugging, so it will totally be worth it. It you are really lame, and you want to skip to the hugging part, scroll down...

Here! This should tide you over:

One of my favorite hugging pictures: two of my girls in fake furs at H&M.

My tumor was on the motor strip of my brain. I also have/had some "weirdness" (obviously a highly technical term that you will have to google later) on my scans adjacent to this location, on my right temporal lobe. They (local neuro experts as well as the UCSF folks), aren't sure what exactly is going on there - it's "ambiguous" - but after two separate Tumor Boards reviewed it, we're treating is as a "secondary location". This actually makes sense, too, because seizures (my red flag indicator that led to my diagnosis) are more often associated with the temporal lobe than the motor strip. And it explains why my radiation treatment was pretty complicated  - for the physicists - not me! I just laid there and got zapped. It sucked, but it wasn't complicated... Oh, and why I have more than a "patchiness" to my hair loss as a result. Try: half of my head is bald; Steven shaves the other half about every 3 days or so. #superschmoopy

Here is a basic diagram of the brain, so you get an idea of what I'll be talking about:

 
First, let's look at the motor strip. (See below for detailed diagram).  The tumor was located around the area where the mouth produces speech: lips, jaw, tongue, etc.  BTW, this is one of the actual diagrams that the UCSF neurologist shared with us. I'm imagining that it's one of those visuals that they create for medical students to help they memorize all the shit they have to memorize.  I hope that's what it's for - because otherwise, it's primary purpose is to give people horrible nightmares?

Freaky looking, no?

 Looking at this - it seems pretty clear to me that my tumor was located around that creepy open-mouthed face because it is the actual articulation of some words that I had the most problems with immediately post-surgery. It also explains why my neurosurgeon and neurologist both had me go through the paces with showing that I had no weaknesses in movement or perceived sensation in my left side of the rest of my body - face, arm, hand, legs, etc. because if you follow logically up that motor strip, that would where the "deficits" would be located.

Hey, kiddies - A little lesson for you out there: the medical community likes to refer to losses in physical/cognitive abilities as "deficits". It sounds more clinical and less traumatic, I guess. FYI - We talked about possible "deficits" the day before my surgery, including significant weaknesses on the whole left side of my body.  Newsflash: despite my drugged up state, it didn't feel less traumatic to me. Nor was I less grateful when coming out of the surgery to realize that my left side of my body was fully functioning/strong.

The "weirdness" located on the temporal lobe explains the more subtle but annoying deficits in my speech - what I call fluency, but is more accurately referred to as "prosody, or the rhythm of one’s speech" (source: Right Temporal Lobe Functions) It appears to be getting better - with lots and lots of practice speaking, but you may notice it especially when I'm tired after a long day, etc.

[For those of you that have read this far, you might want to apply for some college credit units for your effort. Of course, there will be a quiz later to prove that you were actually paying attention.]

I've been reading more about this temporal lobe stuff because of the follow-up MRI I had done last week. The good news is they saw shrinkage in the primary area AKA the motor strip where the tumor was resected (Yay!). However, they are still picking up some "weirdness" in that secondary location. It's a wait-and-watch kind of thing...which is not my strong suit. And with all this time on my hands, I'm doing a little poking around, learning more about the ...

RIGHT TEMPORAL LOBE:
I thought this was a really interesting thing I found on the interwebs:
Sometimes damage to part of the temporal lobe can cause personality changes such as humorlessness, extreme religiosity, and obsessiveness. People may have an overwhelming urge to write.  The Merk Manual Home Edition.

I haven't noticed a loss of humor or more religious tendencies. One could argue that it would be hard to gauge my "obsessiveness" on an objective scale in general...But an "overwhelming urge to write". That's pretty cool. Maybe that explains my interest in blogging? I've always liked to write...I just didn't have the time that I have now! (I have a LOT more time on my hands...especially when I wake up at 3:45 a.m.! DOH!)
 
****THE HUGGING PART****

 I have noticed a personality change in me that is not indicated here, though...

I'm a hugger! Why would I suddenly become a hugger? Don't get me wrong. I've always liked hugs. But I've never been what one would call a "Hug Initiator".

I googled that shit, and the first several links were about tree huggers (#googlefail) - but I did find this blog about Wanting to be a Hugger, though, which I found really interesting. It has a central Christian religious theme, but even if you're not religious, you might find it thought-provoking. I can totally get behind the catchy message: "More like Jesus. Less like a Jerk".

I'm pretty sure, though, that becoming a Hugger has got nothing to do with my tumor location or the various diagrams of my brain. 
 <eh hem>
Question from the audience: But June!! Why did you make us read all that stuff about your brain and tumor???? 
June: Quit yer whining! Hey, you learned some good stuff today, right? You may even be inspired to go back to medical school for all I know. You're welcome.

I just wanted to explain - if you noticed all the hugging - I didn't want you to chalk it up to brain damage.  June the Hugger is about an emotional transformation, not a physical one. 

If you were at this week's Livermore Fundraiser Event, you saw June the Hugger in full force.
Have I met you before? Doesn't matter! Imma gonna give you a hug!

Here is a picture I blatantly stole from someone FB account. Thank, Irene!

I wish I had more pictures to post of the event, but I was too busy hugging! Oh, and ROCKIN' my Mother Fuckin' Ninja Warrior Purple Hair! #mfbcfnw

Wednesday morning, before the event, Steven and I went for a walk, and we talked (and cried) about how overwhelming and humbling it was to have so many people in our lives who are so good and kind and generous...and we talked specifically about this blog and how some people tell us that they are inspired by our journey...

But I told Steven, they've got it all wrong because THEY inspire ME. In my mind's eye, I see my arms wide open, and YOU lifting me up with your words and your prayers and your thoughts.... And all I want to do when I see you is wrap my arms around you all and say, "Thank You!" and "I love you!"

THANK YOU! I LOVE YOU!!!!

And I'm going to do it every chance I get. Consider this your warning!

Did Brain Cancer make me a Hugger? Hell, yes! And I'm the better for it. Who'd a thunk?

______________________________________________________________________________

P.S. I'm going to do a whole blog about the Livermore Fundraising Event soon, but I'm begging anyone out there that has pictures to share. I'm serious when I say that I basically have none. I was too busy hugging people. If you're willing to share, please email them to me at: junemirassou@gmail.com.  Thank you!!!

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 Talk About Goal Setting While I (MIGHT BE) Living with Cancer

This is the time of year when everyone begins to reflect on what they've accomplished so far, and what they want to accomplish in the next year. This has been a tricky thing for me, this year, as I factor in the idea that I might be living with cancer.

Forgive me. I need to interrupt here for a hot second...

Before I launch into this topic, I just have to make this clear to everyone. Some of you get it. Some of you don't. So, I have to lay it all out there. I might be living with cancer.  Yes, even after the treatments I've gone through. If you want to know more of the specifics of what that means to me/us, click on the page "Living with GBM and My Medically Now What?" Regardless of whether I am looking at a recurrence in my future, I am forever changed, physically and mentally (literally). I felt like I needed to get that out of the way because it's been increasingly obvious to me that some of you think that I'm on the road to recovery, and when I'm done, I'll be a "survivor" going about my Old Normal June ways...Old Normal is gone. Forever. My family and I are still working through what that means to us. But we are acknowledging, accepting, and adjusting to this new reality.

Now that we're all on the same page... Let's proceed...

Goal Setting While I MIGHT BE Living with Cancer:
My New Reality is trying to balance my desire to control what I can in my life while accepting that My Grand Plans could go Ka-Blooey! in a heart beat based on what my medical team says from month-to-month. And it's a very uncomfortable place for me these days.

I've been a goal setter for a long time...A serious goal setter for about 20 years. That's when I discovered Stephen Covey and his book, "First Things First" -- It's all about consciously focusing on what matters most in your life and making sure your life reflects that. That doesn't mean that I/we always succeed in that, but it is all about intention and focus.

[If you haven't heard of Covey's work, I highly recommend you do some research of your own. There are lots of resources online to get you started - and he has several books out if you are into that sort of thing. This is the perfect time to do it, too, when everyone is motivated to make changes in the New Year. Damn. I wish I could get a little commission on that...but let's just call it "Paying it Forward" and move on, shall we? ]

At the core of it all is that you are deliberately looking at your life and the various "roles" you play, intentionally identifying what you want to BE/ACCOMPLISH in this area of your life, and then setting up a plan to make it happen through Goal Setting.

Goals should be SMART:

Specific

Measurable

Attainable

Realistic

Timely

Some of you are rolling your eyes at me right now. I see you! (You didn't know that Ninja Warriors have the superpower to see through your computer screen? Silly, silly you!) No, you're right. The concept has been around a long, long time. Kiddies, just because something is old/not new doesn't mean it's not valuable. Look at Beanie Babies and Pokemon cards. Okay, maybe not good examples...

A BETTER EXAMPLE...

(History Geek Alert!!) The origins of  Benjamin Franklin's the Art of Virtue: His Formula for Successful Living dates back to an idea he had in 1726, at age 20! He took a different approach - identifying 13 "virtues" or life principles that he felt were essential.. Each week, he would focus on one of them until he completed the cycle, and then he'd start over again.
I don't know if it's a true story, but I have heard it said that he had a hard time with #13 - Humility - after going through the first 12 virtues successfully. Which is pretty damn funny, considering what we know about Franklin and his ...eh hem...shall we say "weaknesses" as far as Temperance, Chastity, and Moderation go.... Who knows? Maybe he only focused on one a week, so that left him with a clear conscience the other weeks to engage in debauchery to his heart's content? Whatever the truth, overall, he was a pretty accomplished guy, so he was on to something, I think...

Sorry, my history geek self has gone completely amuck...#Freepass!

What I am getting at is ....
Things are different for me right now as a Planner/Goal Setter who might be living with cancer. But should they be? That's what I'm struggling with right now.

What's got me all twisted up? I can certainly make my goals SPECIFIC and MEASURABLE. The tricky part is...are they ATTAINABLE and/or REALISTIC? I'm talking about not knowing the New Normal June - which I'm guessing is going to be changing over time, too - and not knowing what is attainable/realistic for HER. errrr...ME! (What the heck? When did I morph into Elmo and start talking about myself in the third person???)

EXHIBIT A:
I registered to complete a half-marathon in Livermore on March 28, 2015  - way back in the summer 2014. Notice I said, "COMPLETE". I can hear some of my long-time runner friends saying...
Them: "Complete? You mean, RUN, right?"
ME: Uh...NO, I don't mean run. I mean, just cross the finish line after covering 13.1 miles on foot.
Them: But you've run three full marathons and several half-marathons already. You're worried about finishing a half?
ME: Ummm...YEA.

The problem is...I have NO IDEA if this realistic for me - in this next stage of my New Normal- undergoing continuing treatment which includes monthly chemo cycles. And, go figure, there are not a lot of resources out there one way of the other from other people going through the same thing. Trust me. There isn't a Half-Marathon Training Plan for Post-Brain Surgery/Radiation/Chemo Cancer Patients out there...

This is where I enter the confusing territory of...Am I just plain stubborn and/crazy? (uh. maybe you shouldn't answer that one...)  But just so you don't jump to the conclusion that I am completely crazy - Steven and I have been walking nearly every day (2-3 miles) - including The Hill - during my whole course my treatment, and I'm envisioning just adding on 1 mile a week to one of the weekend walks ...Seems pretty do-able to me...but the hell do I know?

How far does one push the envelope to see what we are capable of doing before we've gone too far?  I don't want to limit myself and stop taking chances. But I also want to LIVE as long as I possible can, and that MAY mean accepting that some goals are counter-productive in that respect.
Of course, Steven and I have discussed this issue. The logical first step is to talk to my medical team about the REALISTIC and ATTAINABLE part with them. But given the lack of data I see online, I wonder just how much they really know. And then there's the issue of there being just ONE June "Outlier" AKA #MFBCFNW, which is a very shallow statistical data pool indeed.

I'm not even going to get into the TIMELY thing...TIME SPECIFIC?  That's a "whole 'nother can of worms", as they say... Why do they say that? Google that shit, my friend... Imagine the poor English Language Learners that come to America and try to understand the convoluted, mishmash of nonsense that comes out of our mouths sometimes?

Speaking of which, I'm afraid this particular blog post is about as clear as mud...and I apologize. But that is where I am right now in my journey. I feel like the security of knowing what was going to happen each day during the initial treatment kept me tethered and safe to some degree. This wait-and-see crap just isn't my bag, Baby. But more and more, I'm beginning to realize that it is part of the New Normal June's Life.  Sometimes I feel like Sandra Bullock in Gravity - scared out of my wits and floating in space.

Wouldn't it be nice if it ended for me just like her? Landing on some soft sand with an ass of a 20 year old? A girl dream, can't she?

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 Explain Why I Feel So Lucky Today - and Reveal a Ninja Warrior Secret

Two days left of my initial treatment! It's raining heavily out there, but I don't know what it would take for me to miss my radiation appointment today! Oh, no, no, no, no! You don't know who you're messing with! This is a Ninja Warrior on a mission! Bring it on, Sharknado!!!

June is on Day 29 of a 30 day radiation treatment schedule! Nice try!

You might have noticed that I changed up my blog banner. It probably looks too busy (Hey, who asked ya'??), but for now I think it more accurately reflects where I am on my journey. I'm not just a mother fuckin' brain cancer fighting ninja warrior. I am seeing more and more time and energy for the other "parts" of me. And it feels so good.

In the end of September, when Steven and I received my prognosis, I was in a very different place (mentally & physically) than I am now.  Post-surgery, I was having focal seizures 8-12 times a day! I spent most of my time lying down in bed or on the sofa, and Steven was right by my side the whole time, stroking my hair and talking me through the seizures. And yes, I felt so lucky to have him there with me. (I don't know what I would have done without him!) But I'm not gonna lie...I cried a lot. Not because I was feeling sorry for myself, but the thoughts that kept running through my head were: "Is this the best it is going to get?" "Is this how it is going to end?"

The idea was so crushing and debilitating...I cry just remembering it now. And I'm sorry if I've made some of you cry, too.

Just in case you need some...haha!

By the way, kiddies, I have become the biggest cry baby in the world, I think. Sad tears, happy tears...it's all good! Don't let anyone tell you differently.

So, why do I feel so lucky today, despite the fact that I still have GBM and a lot of the unpleasant things that it entails? 

Well, first of all, I discovered that I was Mother Fuckin' Brain Cancer Fighting Ninja Warrior (#mfbcfnw). So, that's cool, yes? Okay, kiddies, I'm going to share one of the most powerful lessons that I've learned as a Ninja Warrior. Ready?

The less you worry/think about things you can't control, the less "crushed and debilitated" you will feel. Focus on the things you can control. I might look badass, all bald and stuff, but the secret is: my primary weapon as a Ninja Warrior is my MIND. I can control my thoughts.

You mean, you've heard this before? You're right. It's not new. But it takes a long time to master, and it takes a lot of practice and discipline. And you will probably backslide occasionally, which is when those tissues come in handy.  But it's worth the effort to think about what you can and can't control, and focus on the CAN part as much as possible. Trust me.

So, Steven and I  - okay, mostly Steven (#myrock), I have to say, in the early days because I wasn't strong enough in the beginning - started with what we could control - plugging away, seeking out appropriate medical care for me and getting treatments started. Of course, we found Dr. Awesome McAwesomesauce, who changed my prescriptions and I haven't had another seizure since. Eek! I hesitate to even type that - I don't want to jinx myself! Sshhhh! Pretend I never said that. And now my initial treatment plan is nearly complete! That's crazy! It will be 42 days of chemo and 30 days of radiation! Woot!

Don't get me wrong... It is different. No doubt. (If you want more details about the medically side of things, click on the tab above or the link here: "Living with GBM and My Medical "Now What?")

But today, I feel more like I am Living Life in Full. I'm more than just a cancer patient. I feel stronger every day and more like "myself" - but with a more obvious potty mouth, which I've decided isn't such a bad thing.  I'm helping to plan our holiday family gathering at the end of the month and getting ridiculously excited about the arrival of our first grandbaby!  I've even begun to create Pinterest boards and send out absurdly long emails with details about these things. Now, anyone who knows me is saying, "Dang! JUNE is BACK!" <high fives to all of my fellow Type-A homies out there!>

Steven and I went for our daily therapy walk yesterday, and we had a good cry conversation about how we both are forever changed by this. There will always be the dividing line of B.C. and A.C. Where do we go from here? There are so many things that we don't know, too.  We don't have control over everything....

Wait, doesn't this sound suspiciously like something I said a few paragraphs above? I told you it takes practice! Keep trying, my fellow Ninja Warriors! Maybe we'll never truly master it. But if we keep trying, I believe we'll be happier for it.

Cancer doesn't define us, but it does change us. Not just those who get it, but all those who love the person. And it's the "Now What?" part that is confusing, scary, daunting.., But the exciting thing is...there's a "Now What?" for us, right now.

My New Living Life in Full will obviously look different - but isn't that changing all the time for all of all of us? I feel so lucky today because I am focused on the LIFE part.

The One in Which I Talk About the Goodness in the World...and the Essentials

Yesterday, Steven and I were taking our (almost) daily walk up and around Communications Hill. It was chilly (by California standards), and I was bundled in my scarf and Steven was protecting his bald head (brrrr!) with a beanie, but we were still holding hands the whole way - all the way up and all the way down the 3 mile trek, as we always do.

As we reached the ~1 mile mark, he turned me and said, "This is the best part of my day, just walking here with you." And I said, "Me, too. Me, too." and he kissed my hand. With a lump in my throat and tears in my eyes, I concentrated on the feel of his hand in mine, his lips on my fingers, and the sound of the crunchy autumn leaves under our feet.

Me, too. Me, too.

We were at one of the last traffic lights, and I could hear from the chime in his pocket that Steven had received a text. He's been trying to simplify his life - pare down to the essentials. Part of his strategy is to have stricter control about when he does and does not check his texts, emails, notifications, etc., so he was tempted to let it go. I admire that. But with Thanksgiving quickly approaching and the coordinations for all the family travel, etc., I urged him to stop and check it. Even in the glare of the sun, I could see by his expression that it was not good. And then he shared with me:

He has a core group of guy friends that dedicate twice a year to get together. They geek out about food, wine, life, and just enjoy each other's company. One of these men's son (only 16 years old) had passed away suddenly. Neither of us had ever met this boy, but that didn't matter. It could have been anybody's son or daughter...anyone's tragic loss. The rest of the walk home was marked by mostly stunned silence as we both tried to process what we had just learned.

We didn't have very much time when we got home to prepare to leave for my radiation treatment, but one of things that I always do is make a new paper ninja star and write on it  - things to carry me through the experience. It seems like a silly ritual, but it helps me focus and remain calm during the treatments.  It's the MIND/SPIRIT part of my holistic approach to recovery & survival.

We were so stretched for time, though, that I had to grab the paper, pen, and scissors, and create it in the car on the way to the radiology office. But I knew just what I had to do:

Never forget the most essential: LIFE. 

During my treatment, I clutched that ninja star across my chest and visualized our morning walk, hand in hand, and the feel of Steven's lips on my fingers and the sound of the crunchy leaves.

When we got home from my treatment, I received a text from a coworker/friend. (Okay, if you must know, he was like my "work husband" for ~9 years. Love you & miss you, Todd! <3) ... He had a package to deliver to me after school.

It turned out to be a notebook filled with letters and notes from some of my former students. It was passed around the local high school, so these were kids from my class of 2009-2011 who wrote me messages. Letters and notes filled with compassion, encouragement, and hope...and some misspellings (for which I accept no responsibility!) #freepass

It was so overwhelming! I wish I could post every one of them on here. I am so touched. I think I will write about this book in more detail later. These kids deserve it. I just wanted you to have some small feeling of what an amazing gift this was for me. Any teacher would understand. It's one of those jobs where you're never really sure what kind of an impact you've had.

I curled up in my bed for a little nap and cried as I read...good tears  - of joy and gratitude.

and then...
(I know! Can you imagine?)
and then...

Steven brought home a package that was shipped to the winery for me. It was an unassuming white box, but when I opened it, this what I found, folded lovingly inside:

It is toasty warm and Tess-approved.

It is this beautiful crocheted blanket from Project Chemo Crochet. [One of the secrets that no one tells you about being a Cancer Fighting Ninja Warrior is that you are almost always cold because of the treatments and medications.] Please click on the link to learn more about this amazing project. I think I need to learn how to crochet, so I can pay it forward...

The letter inside said:

"...We know that there might be times during this journey when you might feel cold, alone, tired, and scared. Our hope is that during those times you can feel our arms wrapping you with the love that went into every stitch.

Cancer's a bitch, that's why we stitch. Stay strong!" 

The thought of people from all over the U.S. and Canada stitching these squares.. <more good tears>
I feel your love!

I don't know why terrible things happen to people in this world, and I'm so sorry if you are going through something tragic right now.

So, today, it felt right for me to acknowledge:
I alive,
and I'm so, so grateful for all the good there is in this world.

Since I almost certainly won't "see" you until Friday, I want to wish you a day filled with friends, family, love, and LIFE.

P.S. I cry at the littlest things now, so I can't even begin to imagine how much of a blubbering idiot I will be when I have my whole family together. But they will be good tears!

The One in Which I (Loosely) Explain Ninja Warriors and Why I Think I'm Eligible

Thanksgiving Day is nearly upon us, and I know many people are writing with excitement about the upcoming debauchery celebrations of gratitude. I'm going to buck the trend right now because:
1) In 3 more days, I'll surrounded by some of my closest people in the whole world, and if I start thinking about right now, I'll probably cry for 96 hours straight. And I know there'll be enough tears between us all on Thursday to end the drought in CA. (Hey, somebody get on that! I came up with a brilliant plan to end the drought!)

and

2) I woke up with something else on my mind, and that's how these blog posts originate.  It's a very complicated process. You see...I think about something, and I think about it some more, and then I start writing.

(Hint: It's not complicated at all.)

Lately, I've been thinking about Ninja Warriors. For some reason, I zeroed in on that image early on in my cancer fight and have stuck with it, but truth be told....I really didn't know very much about them!  And as a self-professed history geek, that's not acceptable. Who were the original Ninja Warriors, and does it even make sense to call myself a MFBCFNW?

Okay,  just to clarify, I'm talking straight up Ninja Warriors - not Ninja Turtles or Power Rangers or any of the other video game/comic NOT REAL characters out there. (Not that there's anything wrong with that, but we're not talking about Comic-Con here.) And I don't even mean American Ninja Warriors...Although they are real and exceptionally badass.  Side note: If you are luddite and haven't seen this video clip of the first Female American Ninja Warrior to qualify for the National finals, you are REQUIRED to watch this video clip at some point. You can wait and come back to it, but trust me. She is a badass athlete!

I knew that Ninja Warriors were not Super Heroes. And I knew that they really had no Super Powers. (So, I was on the right track.) I did some research on real Ninja Warriors. There is a LOT that I'm leaving out....and forgive me if I get some facts not exactly right! #freepass! (Like I always say, "Google That Shit!" if you want to know more!)

But just a little backstory for you non-history geeks who aren't gonna google shit: References to Japanese Ninja Warriors date back a 1,000 years, although evidence suggests that they didn't officially start to train them until the ~15th century. The ninjas were real people, fighting real wars, but they were different from the samurai because samurai conducted themselves by a strict set of rules and standards of honor. Ninjas specialized in covert operations and mercenary tactics and general badass-ery. (That last word might not be a real word...but it should be.)

But I want to focus on a few things that make me feel like I am qualified to call myself - and anyone who has/is battling cancer - a Ninja Warrior.

• Ninja Warriors are stealthy. The legend persists that ninjas wore all black clothes including a black mask. But Ninjas would really wear whatever they had to in order to sneak up on their enemy. Actually, mostly they wore navy blue because it didn't contrast so starkly with moonlight. True story. Cancer patients also have to adapt their attire to prepare for their fight.

So, yoga pants and track jackets are a good choice.

Hospital gowns and bandanas are even sneakier.

It's important for the technicians to have easy access to whatever they need to administer your treatment. In my case, that means nothing obstructing my head or neck, so they can easily clip on the Mask of Horror. I don't, however, have to wear a gown, so yoga pants rock for me!

Those cancer cells would never expect you to be as BADASS as you really are in those outfits!

• Ninja Warriors did not always work alone. They were trained in carrying each other on their backs or creating a human wall to lift one up to greater heights. Cancer patients have a team of doctors, nurses, technicians, family, and friends fighting along with them. But now we're getting into Thursday's theme, and I don't want to start crying now. So, I'll leave it at this: In the Ninja Warrior world - NO ONE FIGHTS ALONE! 

• Ninja Warriors used a wide array of tools to reach their goals. While fighting cancer, whether it's chemotherapy, radiation, exercise, nutrition...cancer patients know we have things to help us reach our ultimate goal. Let's hear a: "Woot!" for modern medicine...and a return to common sense healthy habits like avoiding toxic chemicals in your home and food!

• In the movies, t.v. shows, and computer games, Ninja Warriors mostly rely on their physical strength. But in reality, Ninjas greatly valued another key to success: their mind.

Heishichiro Okuse — perhaps the foremost authority on ninjutsu and the author of four books — wrote his last work on the subject, Hidden Ninjutsu: The Secret Thoughts and Strategies of the Ninja. According to him, they regarded nothing as impossible and scientifically applied brain power to every problem they encountered. He regards the nonphysical aspects of ninjutsu as the key to a successful career.

I have taken to making paper ninja stars, which can't do much physical damage except if you throw one of them into someone's eye. (Kiddies, in case this is not clear: I'm specifically saying NOT to do that!) In that case, they would really hurt. OWIE! My ninja stars represent things and people that I rely on to help me - even though they can not physically be there at the moment.

They're a mental reminder of all that I have around & within me,
and I hold them close to my heart during all my radiation treatments.

I guess I first believed I needed to be a Ninja Warrior because Brain Cancer is the scariest, most formidable, ...and (#nobullshit here) deadliest enemy that I have ever faced. And I have no choice. I can't turn and run the opposite direction, and it will just go away. I can't go to my "Happy Place", and all will be restored to normal (although a nap is a beautiful thing). Steven and I are making decisions that are life or death. And it's scary as hell. We have to believe that nothing is impossible and scientifically apply our brain power to every problem we encounter.

The only way to defeat it is to go through the pain, through the fear. Failure is a possible outcome, but quitting is not an option. I have to be a BADASS. I might not look like it in my yoga pants and track jacket, with half my hair fallen out...but that's just part of my stealthy master Ninja Warrior plan. And there is not evidence (that I could find on the interwebs) that Ninja Warriors never got grumpy and/or cried.

And that my friends, is why I believe Cancer Patients & Survivors have earned the right to call themselves Mother Fuckin* Ninja Warriors. 

*MF is totally optional because some of you have boundaries about cursing that are different than mine. And that's totally fuckin' okay! #freepass #nofilter <fist bump!>

Love, 

June Xoxoxo