The One in Which I Talk About the "Turd in the Punchbowl"

Recently, my husband came home from the winery and said, "I was pouring wine to a nice group in the Reserve Room, and then I said something that was like 'the turd in the punch bowl'." I thought...it could be anything, really. Steven is known for saying some things that could be deemed "inappropriate".  Like at one of the latest wine club releases, when Steven somehow tied in the phrase "It's like porn. You know it when you see it." with his welcome address to our club members. I don't know what to say. He has a masters in literature? A way with words? I love my Schmoopy with #nofilter! Can you imagine a more perfect match for the #MFBCFNW?!

Anyway, back to the "turd in the punch bowl". The background: When I was first diagnosed, one of my high school friends sent me some Ninja bracelets from the International Spy Museum that both Steven and I wear every day.

Thanks, Pam! (And the SKW family for the "No One Fights Alone" bracelets!) 

One of the guests asked about his Ninja bracelet and Steven told "The Story" - about how his wife has brain cancer and calls herself a Mother Fuckin' Brain Cancer Fighting Ninja Warrior  - (I'm not sure if he went that far)  -  that she identifies herself as a Ninja Warrior. And the guest said, "Oh, <uncomfortable silence> Because I've been to that museum, and it's really cool."

So, if I understand the turd analogy correctly, the reference to my cancer was the turd. I will admit that having cancer is pretty very shitty, but let me get this straight: We're not supposed to talk about cancer with people we don't really know...or only when it's "appropriate" - maybe when they bring it up first? So we know it's "safe.

I've had my own "turd in the punch bowl" moments recently, I guess. I've dyed my hair blue - all kinds of shades of blue (which is nothing like Shades of Grey, by the way. I sense some disappointment there? Especially with the earlier reference to porn? #sorrynotsorry)-  I've been trying to find the right shade of blue - which I think I've finally found - More like Smurfy than Sharky teal.

My hair started out a caramel color brown when I was young, then darkened a lot through high school and college.

Little June didn't know she was a Ninja Warrior yet.

This isn't a great picture of my hair at my college graduation, but it's an awesome opportunity to show my brother's rad Flock of Seagulls period. And my Mom, Dad, and Grandma.

Then in my 30's, my stylist suggested adding highlights. Eventually, it was very light - and I wasn't really sure what my "natural" hair color was. (I think hair stylist like to do that, don't they? So, they can sucker you into paying mucho dinero every 6 weeks of so.) Well, I ditched my stylist about 2-3 years ago, grew out the highlights, and discovered that there is some gray all along the temples. I'm okay with that. I've earned those grays, but it was a bit of a shock at first. So, I was coloring my own hair to try to match the roots up top as best I could - just coloring the gray.

Then I got cancer. "Fun Fact" (not really "fun", but maybe "interesting"): Unlike some other kinds of chemo, the one I take does not make all of my hair fall out. It's the radiation treatments that were the culprit, so the hair fell out only where the head was radiated. Apparently, a LOT Of my head was being radiated - and don't forget the exit points!

My hair fell out in a strange monk-on-acid-like pattern, I think.

But it's grown in (mostly), and I'm digging my little pixie hair cut. But look at how dark it is! And the gray was even more apparent. Believe me. vanity has gone out the window; however, I realized that I had a unique opportunity to let my freak flag fly and dye it ANY color. But I'm much more conscious about the toxic stuff that we wade through on a daily basis, and I try not to deliberately be in contact with it if I can help it. So, I started buying demi-permanent dyes that wash out after a few weeks and don't contain nasty, toxic stuff. I can't won't bleach all my color out of my hair, so it comes out like a dark brown with colorful highlights.

Relay for Life, Livermore - June 2015

First, I tried purple to celebrate the Relay for Life event, and when that faded, I decided to be bold and try blue. I swear that in all my 51 years of hair colors combined, I haven't ever had as many compliments about my hair as I do now. I've had women, young and old, actually stalk me in stores to stop me and say, "You're hair is gorgeous! I love the blue!"

And more importantly, I love it! 

I've found my "natural" color. I was supposed to have blue highlights with dark hair all along. 

Bird walking...bird walking...where was I? Oh, Yea. 

The Turd.

Twice now, someone has asked me what "inspired me" to go blue.And I tell them the TRUTH - "Well, actually, I have brain cancer, and I lost most of my hair through radiation treatment. When it came back, I decided to do something a little wild." I say it very matter-of-factly, not sad or depressed. I don't start crying or anything. It's just, well, MY LIFE. But the expressions on the faces of those listening to this, though...well....

turd. in. punch bowl.

And you know what?

I call bullshit. If 50% of males and nearly the same percentage of women will get cancer in their lifetime, we need to be talking about it more. And not just when it doesn't make people bummed out or uncomfortable. Or at an event specifically for "OUR" Cancer Awareness. We're supposed to live in this happy, land of unicorns and rainbows where cancer doesn't exist? Or where at least we're not reminded of it? Blissfully in denial? Yet there are so many different kinds of cancer that some cancers have to share months of "awareness"? And ribbon colors.

Just think about that for minute.

While we're on the subject, these months of "Awareness"...like people aren't aware that Breast Cancer or Brain Cancer or Colon Cancer, etc. exist? Let's be honest, and say that these months are really fundraising months for these cancers where we focus on a type of cancer and those who are involved are given more focus by legislators and the public to have a voice to plead their case: Please fund our organizations for research and support. Please help us find a CURE. Well, I would like permission to say that 12 months of the year without being accused of being "inappropriate".

No, I take that back. I'm not asking for permission. Fuck it. I have a #braincancerpass #freepass, Excuse me if I make you uncomfortable or bum you out by talking about my condition when it's "inappropriate". I. have. brain.cancer. And if we don't start talking about cancer more freely, when will it be cured? Is there a disease that has a precedent in modern times - one that affects so many people, and yet we're not frantically pouring money, time, and energy to find a cure?

I know there are a lot of hard-working scientists in research facilities around the world, trying to uncover the mysteries of this disease. And I know this is complicated because each form of cancer has it's own idiosyncrasies. So, let's talk about it. And not act like it's a turd in a punch bowl.

OH, you know my Schmoopy, the one with a "way with words"? At our last oncologist and neuro-oncologist's appointments this month, he asked them point blank: "Do you think we'll ever find a cure for cancer?" Since this has gotten ridiculous long, and that's a whole 'nother kettle of fish, I'll save their answers for another blog entry. But you've got to admit, that's a pretty ballsy thing to ask them, no?

And everyone likes a cliffhanger, right?

The One in Which I Feel Blessed to Meet my Granddaughter

5-1/2 months ago, I was diagnosed with gioblastoma multiforme. I couldn't even pronounce it or spell it, let alone tell you what it was! The hardest part in the first few days was having to tell our children about the dx. I don't remember much of the dark, early days - but I do remember sitting on the sofa, along side of my oldest, April, and failing miserably at "holding it together". After Steven explained the situation and what it meant, I leaned into her shoulder and choked out, "I'm gonna fight this. I'm gonna fight this so hard, so I can see your baby..." And she whispered, "Of course...I know..." Thank you for believing in me, April.

At the time, it seemed so far away...and I know for some people diagnosed with GBM, 5 months is a pipe dream. And yes, Autumn was my dreams that helped get me through the difficult times. I thought about Autumn Elizabeth to get me through my "custom fitting" of my radiation mask. I visualized her during my radiation sessions. I thought about Autumn Elizabeth during my MRI's...

And here she is - I made it to April's baby shower, and I'm still here for her birth! What a blessing!

Autumn Elizabeth, Day 3, Thinking some serious thoughts....

I put a cork board on my wall back in September. I pinned up Autumn's ultrasound picture, a brochure of our winemaker's cruise down the Seine (in April), and a picture of the UCSB graduation (Katherine graduates in June). At the time, those were the the events that I thought it reasonable to assume that I might still be here.  I also put a picture of the family at April & Coffey's wedding, representing all the "unofficial" opportunities I have to see the family.

I still get all squirrely and anxious when Steven gets too far ahead in the future. Maybe it's superstitious. Living with Cancer is a bizarre thing  -- for me, anyway. I want to remain hopeful, and yet I don't want to be too greedy. One day at a time, one week at a time, one month at a time...

Yes, I am a warrior, but I'm not fighting AGAINST something. I'm fighting FOR things. I'm a Mother Fuckin' Brain Cancer Fighting Ninja Warrior because I'm fighting for moments like holding my sweet granddaughter.

Cruising down the Seine with my Schmoopy  

http://winecruisegroup.com/wp-content/uploads/2014/07/Steven-Kent-Wine-Cruise-April-2.pdf

Katherine's graduation...

I'm going to keep fighting for these things as long as I can. 

And I hear a collective whisper,

"Of course...I know..."

Thank you for believing in me.

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 the Importance of my Ninja Stars

So, I had this high school friend, Pamela H....the kind of friend with whom you exchanged notes throughout the day in high school, passing in the hallway. (Kiddies, this was an archaic custom that happened before cell phones and texting...I KNOW! How we suffered!). We were are such geeks, that I highly doubt that anyone else's notes were filled with the same kind of socio-political commentary that ours had. (We were 17 years old! Jeebus!)

I went off to college in D.C. to study political science (go figure!) , and then my parents moved far away from our hometown, so I lost contact with pretty much all of my high school friends throughout the following years. Until Facebook happened. Suddenly, I was able to reconnect with so many of my hometown friends - and just in time for our <mumble,mumble> reunion! What a great time, reconnecting In Real Life with these people!

How is it that the one picture I have of Pamela at the reunion, she is not facing the camera??? Oy!

I look at this picture now and see so many faces that have reached out to me in the last 3 months and filled me with so much support and love and encouragement...Just give me a minute...
<grabbing some tissues>  Big Hugs & Smooches to all of you! You have no idea how much you have helped me through this challenging time.

But I digress...Shocking, I know. I usually am so good at staying on point and being succinct...
<snortle!> Hey, give me credit because: 1) I always have a point and 2) I eventually get there!

Pamela lives in New York State now in a place that sounds like Shakespeare lived there at one time - which totally makes sense because she has always been wicked smart and had a love of literature. I mean, she studied Latin in H.S. - on purpose! And she's a librarian! (Yes, kiddies, these still exist today in some locations! Google that Shit if you don't know what it is.) It was amazing at the reunion how quickly we slipped back into our conversations, like no time at passed at all. It was difficult to get into anything deep (see picture above for evidence), but I had heard that she was going through her own Ninja Warrior Caregiver Superhero experience back then...

So, I guess it shouldn't have been a surprise to me at all that a package arrived from her "Shakespeare-town" not long after I went public about my diagnosis. It was filled with thoughtful, lovely treasures to amuse and comfort me, including this:

A handy camo tote bag, filled with little ninja stars to remind me that I had permission to FEEL many things on this journey. In fact, it was a given.

What she didn't know at the time was that she had sparked an idea within me: 1) I could learn to make ninja stars myself. Any self-respecting Ninja Warrior should know their way around their tools and improvise as required, right? and 2) These could be a physical manifestation of not just my feelings, but my hopes and inspiration and strength...

And that's how the idea was born to make my own Ninja Stars. Okay...so, now what?

Step One: Go on the Interwebs and search youtube for a tutorial on making Ninja Stars. (It probably doesn't surprise the kiddies out there that I had many choices.) I chose a simple, straight-forward one that seemed to have a lot of views already. I'm a visual learner, and this worked for me.

Step Two: Experiment with different paper to find the ones that work for you. Cardstock was too thick for me; construction paper was a little too flimsy. The best for me is the already square scrapbooking paper, but I didn't discover this until late in the game...

Step Three: Go for it!

I started making ninja stars before every radiation treatment. I wrote inspirational words or notes to reflect my mood at the time. Steven suggested about 2/3 of the way through that I date them as a record of what I was feeling, but it was too late. And besides, I have this blog if I ever need to look back for that, right?

Then I made ninja stars for all of the radiation technicians and nurses who I saw ever day with a note telling them how grateful I was for their compassion and care, and reminding them that they were Superheroes, too! It got to be a routine: they would ask me what I had on my ninja star that day, and I would clutch it across my chest while strapped into The Mask, pinned against the table, and being zappity-zapped.

Part of my collection - I keep finding them in pockets and purses...

They have been such a source of comfort and strength and focus for me. And now that my initial treatment is done, I guess I'm a little addicted. I started making ninja stars for others - my Carson School Family and my Steven Kent Family... These say, "Live Laugh Love". It's a simple message, but when it comes down to it, it's pretty simple.

I wish that for all of you  - 

not just during this holiday season, but every day.

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

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

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

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

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

But I'm not talking about Steve Jobs. 

I'm talking about Steven Mirassou. 

My Schmoopy. 

My Rock. 

and now my Caregiver.

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

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

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

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

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

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

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

It's exhausting even to think about it.

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

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

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

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

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

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

Let's see....

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

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

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

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

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

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

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

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 Go Full Baldy and Still Feel Like Merida from Brave

Shall we go in the Way Back Machine...just kidding...about a month ago, when I decided to get my hair cut "short"? (See post if you've forgotten/missed that one.) If you remember, I was specifically told that I wasn't going to lose all my hair from the chemo I was taking, BUT I would lose "patches" of hair due to the radiation treatments.

So, rather than shave my whole head, I decided to cut it short and just see what "patchy" really meant. In my case, "patchy" meant I lost almost all of my hair from the crown on down to my ear on the right side of my head. There were not going to be any comb-over techniques to hide this one. I still had basically a normal amount of wavy, curly hair from ear level to the nape of my neck. So, if wore a hat, there was the illusion that I wasn't Full Baldy. But without a hat, it was just a hot mess.

Also, I signed an actual paper that said I understood that there are no guarantees that lost hair will ever grow back again...so, it was time to jump in the deep water of:

1. shaving my head
2. getting a wig (or two)

So, naturally, I went to a professional....

Schmoopy AKA #myrock shaved his head weeks ago in solidarity.

Now, he's obsessed and thinks it's "too long" if more than two days have gone by between shavings. Love you, Schmoopy!!! #baldhottie. As a result of all his recent experience, I entrusted him to shave my head. We have no pictures because I was trying to avoid the mirror during the actual "act", and it looked really messy anyway. Like, there was HAIR EVERYWHERE!

First, he had to scissor cut the considerable amount of hair that I still had on my head. Then he had to do that actual shaving. When I first looked at it, I thought he didn't know what he was doing - there were still dark patches and totally bald patches...abut then he explained to me that the BALD-BALD was from the radiation - when the hair literally falls out, and you've got NADA on your scalp (except redness and dry skin from the irritation).  The dark patches were stubble from my hair that was actually still there. So, the Natalie Portman stubble thing was not to be.

Natalie Portman famously shaved her head for V for Vendetta. I definitely need to learn how to do the smokey eye thing...

In case you're wondering: I would have to razor shave my whole head in order to get an even look - and I've been told that is not the way to go. (Owie! and a major commitment to keep it up)  I was thinking about doing a chalk drawing of a globe or something, but that would only be for special occasions, of course.

Steven, Me, and my brother, John - Baldies Unite!

But first let's put some hats on! Brrrrrrrr!!!!

The bald thing really isn't a big deal. Let's face it. That is NOT one of my 99 problems.  It's all about adaptation. The single biggest thing I've noticed is that my head is cold! How do men do it??? They just get used to it?? My (obvious) solution: Hats, hats, and more hats!

I got a couple sleep caps which are super soft and warm at night. And a skull cap like thingy so I can wear basically any hat and not have it chafe my scalp - which is getting tender due to being to close to the end of my treatment. I have also ordered a wig that I will have in about a week. I don't want to reveal that just yet, but let's just say it is NOT this:

I ran the Princess Half Marathon in 2013 dressed as Merida. Not too many women dressed as Brave. I found this guy at the start, though. 

Although Merida's hair didn't inspire me with my wig choice this time, she's been very much on my mind during the last few days of baldiness. Because her hair was spectacular (in the movie), and she is a such a badass.

I've just finished up week 5 (of 6) of my initial treatment. These last 7 treatments are called "boosts" where, in addition to the normal routine, they spend some time really focused on a specific area of the tumor cells.  I had been trying to avoid steroids as much as possible (because of the unpleasant side effects) but they are amazingly effective at minimizing swelling of the brain tissue. I started taking them last week because I realized that I was having some headaches and my speech was being affected/slowing down. I guess the "boosts" are causing more swelling because Doctor Rad (the radiologist) has upped my dosage for the last week. This will help with the headaches and speech, but probably make me look a bald chipmunk!

I created a playlist from Brave's soundtrack to play during my treatment yesterday, and visualized this scene from the movie when this song came on. Ultimately, Merida learned in that movie that she didn't have total control over what happened in her life, but she could remain true to herself, face adversity proudly, and do the right thing.

We can't control everything, but we can control our reaction to it.

Merida hair gone, but a half-marathon medal around my neck!

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 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!