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 Really LIsten to Todd, the Hawaiian Surfer Dude

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

SPIRIT:

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

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

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

The One in Which I Explain 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 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).

The One in Which I Just Try to Recognize that Life is Happening...NOW!

This was my day yesterday.  I've included some lessons along the way that I'm learning every day...just for you, kiddies!

MY MORNING
I woke up early this morning, and instead of writing for my blog, I wrote an email to my children. I had mentioned yesterday that I was working on a page about my Personal "Now What?" after my initial treatment is done. I will still post something eventually, but I felt like I should share that with them privately first, rather than on my blog. Especially because my "Now What" is all about them!  The Cliff Notes version: I am determined to live purposefully (PLAN) to make sure we spend as much time together as possible. And in those precious moments, just focus on that, and not worry about what may or may not get in the way of our plans down the road.  

Kiddies, here's been a huge lesson for me: We can (and should) PLAN for life, but we can't CONTROL it.

After a long stint on the laptop, I did my juicing routine. I juiced some crisp cucumber with some carrots, several leaves of spinach, a little ginger for a zing, and one small apple. It was surprisingly delicious, as the vegetable juicing combinations can be. Really!

Side note: Okay, kiddies! I was going to describe things as organic, but it got really repetitive. So, assume that everything I am eating is organic whenever possible from now on. That was one of the biggest take-aways from our first meeting with the UCSF neuro-oncologist in October. 

Another lesson I've learned: When it comes to cancer - and just your health in general -  eating organic is really important.
Once I was done, my brother made  juice with organic radishes and organic apples (see, doesn't it already sound repetitive?) The combo also was surprisingly good.  Go, figure!  I don't know if I've mentioned this before, but my older brother, John, is staying in town for a while. We were born only ~15 months apart, so we don't actually fit the definition of "Irish Twins", but we were pretty darn close.

Aren't we the cutest things? I'm not sure if he is making a peace sign or doing some dorky Star Trek thing, though...

John lives in Boston, MA with his lovely significant other, Condee, but they agreed that it was the right thing for him to come out here for a lengthy stay to be closer to me after my prognosis. Fortunately, he has the kind of job that he can do pretty much anywhere (as long as he has a landline - which is proving to be more challenging to find here in Silicon Valley than one would think). I am so grateful to him for having rearranged his life in order for this to happen and so grateful to Condee for being willing to accept his absence for a while.

I got to spend a lot of quality time with my older sister, too, the week after my surgery. Although I think I was a lot less perky then. Sorry, Sis! <smooches!> See you at Christmas time!!!

Spring 2013, Disney Princess Half Marathon with Seestor

I know not everyone has the ability to do this! Alert: This is a NO GUILT Zone!

 Kiddies, I'm just saying that there's something special about being together with someone so much that you lose that urge to fill every silence with words because you just don't feel like you have enough time to say everything you want to say.... and you are in ordinary situations when magical, spontaneous moments can happen. Bottom line:  Keep your family close to you if at all possible.

Oh, and just so you get this straight, I have no one to blame but myself for this situation. 22+ years ago, Steven and I moved 3,000 miles across the country, and it devastated my family. They tried to teach us that lesson long ago, but we didn't listen! (Darn kids!) I didn't really think my parents would ever forgive him for "moving me away" ...but I told him just yesterday that I think he's come a long way towards redemption as they've seen what a #ROCKSTAR he's been through this shit.

Speaking of the #rockstar AKA #baldhottie - It's been raining...I mean, like, REALLY raining here in San Jose (YAY!) , but Steven and I went out for our walk up Communications Hill anyway. I had gotten a brand new wool hat from amazon yesterday (with a  soft, silky interior - mmmmmm) to warm me up without irritating the bald, zappitied parts of my scalp. And Steven thoughtfully bought me some gloves at the store (awww!). We were toasty warm even despite the wind at the top. We talked about life, liberty, and pursuit of happiness - you know, the usual chit-chat!

Gratuitous picture of piggy in rain boots. (Don't be so serious all the time!)

Kiddies, I have already said that it is the daily connections that matter. These walks are the highlight of both our days. But here's a new lesson for you: You CAN walk/run in the rain if you have some good gear on. That's something we know instinctively as kids that somehow we forget when we get older. Humans don't melt!

By the time we had finished our walk, we had barely enough time to get ready for my radiation therapy appointment. I decided to make today's ninja star out of cheery colors (yellow & orange) to combat the gray skies:

It's a little messy because I was rushed and in the car, but between the things that I wrote in my email to my kids and the conversation I had with Steven, I knew the message I wanted to carry with me today:

BE PRESENT. LIFE IS HAPPENING RIGHT NOW!

I included the #planforit because I don't think that this is the same philosophy as just letting life "happen" around you. You plan to make it happen. But then shit happens and you need to adjust....And while it's all happening, be THERE, not thinking or looking for the next thing. Lamenting the fact that something "ruined your plans" ...Or worse yet, looking back and wasting time wishing you had paid more attention in the past. <--- Okay, that was stream-of-conciousness version, but I think that there's a theorem in there somewhere:

PLANS + SHIT = LIFE

 DEAL WITH IT + APPRECIATE WHAT YOU HAVE

That's a rough sketch, but I want credit when some genius solves the whole thing. This could be some Good Will Hunting kind of shit.

MY AFTERNOON

After my treatment, Steven and I went for lunch at a little Italian place. The pizza oven warmed the restaurant and created a perfect atmosphere to combat the rain. And - I kid you not -  a rainbow did appeared in the sky as we were walking back to the car. I'm not making this up. (Now, if I had said there was a cat riding a unicorn, I can understand how it would have sounded suspicious.) I thought about taking a picture of it, and then I decided, "No. I want to really SEE it. RIGHT NOW."

Another lesson for you kiddies: Look up and around. There are fleeting beautiful things that you will miss if you are always looking down. And you don't have to Snapchat or Instagram it all. (P.S. I'm not being a hater. You know I love me some social media!)

The rest of the day for me was spent under my Chemo Project Blanket (Love!), watching a few good movies with my brother and Steven. I got a surprise visit from a former coworker/friend, Irene. Unexpected extra hugs and gifts! Bonus love!!! Xoxoxo!

The object to the right is a "Dammit Doll". Irene said she wanted to get me a "Fuck It" doll, but they didn't have one. Haha!

EVENING

 I skipped my daily nap (which hardly ever happens these days!) because I was enjoying my rainy afternoon so much. So, my evening was short. But Steven made this simple meal of chicken and green beans (organic stuff  - DUH! - that John bought at Whole Foods). It was yummy! Did you know that organic chicken from WF actually tastes like CHICKEN?!  And we sat around the dining room table and "broke bread" together with Aidan. Until I went to bed at the late, late hour of 8:00 p.m.

This last lesson goes out to all of you that have someone in your life that is dealing with any serious illness: I know you feel helpless and that there is "nothing you can do". and it feels that way because, let's face it, what we all really want to do is give them their health back. and it sucks that we can't.

But what you can do is be one of the "small-ish" things in their day that make them smile, or laugh, or cry, or look with a sense of wonder. (If you can't be there in person - a card, a message on Facebook or Twitter, a text...it all makes a difference.) 

And if you are one of the people like me, who currently has a serious, shitty illness: 

Try, try, try to spend as much of your day as you can

Being Present 

and 

Realizing that LIFE is happening all around you...

including IN YOU.

So, kiddies, there you have it:

Open your arms, and let it in. This is LIFE! Right here. Right now.

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

The One in Which I Start to Feel of the Effects of all this Treatment...

I had an idea for a blog post when I woke up early this morning, but now I've forgotten it....

Shit.

Oh, yea. The effects of radiation and chemotherapy. (hint: one of them is memory)

I remember (that's a plus, right?) on our first visit to the Radiologist, this sweet nurse gave us this packet of information about what to expect from the treatment and support systems for cancer patients, and...and......but in my mind, I think I was still saying, "Holy shit! I have brain cancer!" over and over again, so I didn't quite catch what she was really saying.

Imagine a Charlie Brown movie and what we hear every time the teacher speaks. 

It was definitely like that:

I'm pretty sure that Steven was as shell-shocked as I was, so...
NO! We weren't "getting any of this".

I dimly remember her saying, repeatedly, that the symptoms I was going to experience wouldn't start until about halfway through my treatment cycle - 3 weeks into it. Well, slap me silly, and call me darlin'! Guess what? It's been three weeks, and right on cue:

1) My hair is falling out. I think I gathered enough hair yesterday to knit a dog sweater. I don't want to exaggerate, so it would have to be a very small dog - like a yorkie or chihuahua... (Okay, I googled "knitting with hair" and let's just say...I don't recommend it. Don't say I didn't warn you.)

2) My memory is suffering from.... what is it called? Shit, I forget....
Oh, yea! There is an actual term for it: "Chemo Brain". Funny. They didn't mention anything about "chemo brain" in "chemo class"...

Of course, it's complicated and it's not obvious what is causing  my memory problems - if it's the chemo and/or the radiation...and in my case, it very well may be related to the Bastard Thugs (cancer cells) themselves that have taken up (temporary) residence in my brain. Not to mention the cocktail of three medications that I am taking to prevent seizures. 

Let's take a moment to imagine how brilliant my blog would be if I weren't taking the medications, radiation, chemo, and had brain cancer? 
<pause> I'll wait....
So, excuuuuuusee me if I miss a few words now and then or put things in the wrong tense. #freepass!!!!

It's like I used to say to my mother when she'd say, "See! We all smoked and drank when we were pregnant with you guys, and you turned out just fine." To which I always replied: "But who knows how much BETTER I would have been if you hadn't smoke and drank?"

Love you, Mom! She's the one that taught me that you never let the truth get in the way of a good joke.
(But it's mostly true.)

3) Fatigue. What. the. actual. Fuck??? 
Steven and I have been taking daily 3 mile walks up and around Communications Hill. And I was feeling pretty studly. Not that we were breaking any land speed records, but Woot! Look at me, with brain cancer, exercising...and sometimes passing people! Confession: I always whisper in Steven's ear, "Should we tell them that I have brain cancer?" To our credit, I never do. I just think it. Which isn't bad, right?

On Tuesday, I got back from our walk and ended up napping for about 3 hours. I felt like I had been run over by  a truck.

Question: When does a nap become just sleeping?

Well, I googled that shit, and I have some news for some of you <cough> JILL <cough>...
The Mayo Clinic says, "Aim to nap for only 10 to 30 minutes." (full article here)
Even cancer.gov says that if you are receiving radiation treatment, you should aim for no more than an hour.

What?! But I love me some nappy time!!!

Gratuitous picture of napping puppies -
It was so hard to choose because there are so many pix of cute napping animals on google images!

Yesterday afternoon, Steven suggested a walk. I rolled over in bed and slept some more. And it was warmderful! <--- not a brain related typo. This my new word which I expect to see in the Oxford Dictionary next year. I'm kind of afraid that it might be more like "fetch" and never catch on, though.

So, I will take a (shorter) nap today, and we will walk - even it's raining. Because I'm stubborn like that. That's what ninjas do! And if regular exercise is going to increase my chances of a quicker recovery from this treatment, I'm going to do it - come hell or high water!

Besides, did I tell you that Steven and I registered for a half-marathon in March? (This was wayyyyy before the shit hit the fan.) And we're still planning on doing it. Walking, not running. But this MFBCFNW is planning to train for and walking 13.1 miles four months from now. Join us! March 28. 2015 - Livermore Half Marathon!

Gotta keep the eye on the prize, people.

<cue music>

The One in Which I Reveal that George Washington was a MF Ninja Warrior

I woke up this morning, in bed with my arms around my Schmoopy, to the sound of rain drops falling softly against the window. And I was immediately transported back to a memory of laying in a pop-up camper with my family and hearing the rain drops plop on the canvas sides and the breath of my siblings beside me and my parents across the way. And it was so vivid.

I don't have a picture of our actual camper.I 'm sure my mom has many. I don't remember us having propane underneath. Other than that, it seems pretty accurate.

It's weird how the brain retains things, and how they are retrieved instantly from a smell or a taste or sound. Let's face it. The brain is weird. Magical. Powerful. Mysterious. and Weird. Which I guess is my round-about apology for this rambling post...

Today's radiation/chemo will mark the halfway mark of my current treatment regimen. I've learned a lot lessons from fellow Ninja Warriors out there that have seen battles with cancer, but one of the wisest is: Your journey is your own journey. Sounds simple, but it has given me a great deal of perspective after I first attempted to google"GBM" and got all freaked out.  Remember that? (Warning: Absolutely No Unicorns or Rainbows Contained in this Post (sort of)
Thank you to all the Ninja Warriors that helped through that particular hissy fit difficult time.

When I first got my prognosis, another wise Ninja Warrior (Bethany McIvor!) suggested that we google "GMB Survivors". I wasn't ready then, but I am now. Remember, kiddies, how I said we're all on our journeys? But this is a great lesson in how important keywords are when searching the internet.  Entering the keyword "tea party" will yield you VERY different results than entering in "tea party food ideas". These things are important to know because it would be very shocking and disappointing  for some Tea Party lobbyist to arrive at this:

Hint: Sometimes things end up in my blog just because they make me giggle to think about them. Giggling is a good thing.

P.S. I have lots of other lessons about google, but I'll save them for later...unless I get that inevitable communication from their lawyers.

So, I took a deep breath and googled that shit yesterday: "GBM Survivors". And yes, it contained (some) of the information that I was avoiding: The survival rate for GBM is... <June sticks pointer fingers in her ears> "La la la la...not listening!" But this time, I sucked it up and looked at the actual numbers. I already KNEW them, kinda-sorta. It just confirmed the whole Outlier thingy I've talked about it. That wasn't what I was looking for anyway. I was looking for WHO survived and WHAT they are doing.

I know that there are no secret recipes or cures, especially for the particularly nasty variety of Cranium-Threatening Bastard Thugs that are in my brain.... I realize that "cranium" isn't really the right word, but I can't think of a really good synonym for brain?" Oh! I know!!! How 'bout "gray matter"?

Okay, so henceforth, I do decree that they (the fucking tumor cells in my brain) will be referred to as Gray-Matter Threatening Bastard Thugs!  I'll just call them Bastard Thugs for short. But y'all will know what I'm talking about now, k?

Ninja Warrior attacking actual Bastard Thugs (GBM cells) with ninja stars! Fuckin' Awesome, right?!

Anyway, this is some of what I took away from my initial search for Stage 4 GBM Survivors is:
1) They exist! Yay! They're not unicorns! (Whoops! Sorry, kiddies! Ignore that last part.)
2) There are Mother Fuckin' Brain Cancer Fighting Ninja Warriors who are Long Term Survivors (LTS)!
Check this LTS ninja out: Cheryl Broyles's Inspirational GBM Brain Tumor Survivor Story
3) Knowledge is power. If I want to be a Long Term Survivor, I have to ACT like one.
Anyone who knows me knows this: I'm not quitter. I'm going to research and train and use my body, soul, and mind in this fight.

Sorry to break the news to you all, but this was a big a-ha for me (But remember what I said, kiddies: knowledge is power!):

4) This is only the first battle. This is an all-out war, and there will be more battles. There will be more treatment cycles and more battle scars.

The Good News: We don't have to think about them today. We don't even know what they are! What a waste of time and energy - and I can't afford to waste either of these things.

Because I'm a history geek, a thought that keeps running through my head are stories my father sometimes tells (fellow history geek! fist bump!) about George Washington during the Revolution War. Did you know that he lost more battles than he won in the war? And he had many close calls that could have ended his life.  (You'll have to ask my dad for the specifics. He's much better at telling those stories!) But it's obvious that George Washington was a Ninja Warrior, too!

Google truly failed me this time. The best I could to was a GW vs. Zombies pic.Which is also pretty bitchin'!

Although I couldn't find confirmation of it on the internet, I'm pretty sure GW's battle cry at Yorktown was, "Die, you Mother Fuckin' Bastard Thugs"

P.S. Did you know that I went to George Washington University, and I lived in Washington Crossing, Pennsylvania for a time in my life?

Coincidence, or something more?