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 Tell You How Beautiful You Are

If you have been following my blog, you know that Steven and I went on a river cruise down the Seine in the beginning of April. I've left out a little detail that I've been wanting to write about, and now seems like the time.

I met a woman about my age the first day of the cruise - traveling alone and just gotten off another 14 day cruise! Her name was "Candy", and she had a little, spikey pixie cut in platinum blond. She socialized with the other passengers, but seemed very comfortable to be sitting alone, too. In fact, she often sat in the lounge area, alone, listening to the musical entertainment and...knitting. But knitting with a yarn/material that I'd never seen before. It was more like trim in a lovely wine colored string with metallic edging.

Wear Gray for May - Brain Cancer Awareness Month, Day 11 - American Brain Tumor Association

I remember I told you that I didn't bring a wig at all for this cruise - wanted to be bald and proud! - but I was cold most of the time, so I often had a hat on, even inside. <----probably one of the most annoying day-to-day side effects of cancer and/or my meds...It doesn't help that I have hardly any hair on my head!) I don't know if Candy thought I was embarrassed by my baldness, but one of the first days she came up to me, held my hands in hers, looked me in the eyes with the most intense, earnest look and declared, "You are beautiful. Don't ever forget you are beautiful."  I stammered, "Thank you." of course, but I was caught off guard. I think she may have thought my brain cancer had really affected my speech. We hugged, and she was off again to be her unique Candy self. Where ever you are Candy, you rock!

Candy and I sat together in the lounge sometimes during the cruise- especially when Steven was doing his wine presentations. (She really like the wine! lol!) I never asked her any probing questions. like why she was traveling alone or if she had experience with cancer...I figured if she wanted me to know, she would volunteer the information. I wonder still today about her adorable pixie hair cut - Was that a decision that came after a battle with cancer like me?

The day before the cruise was ending, she came up on me unexpectedly again. She had her knitting in her hands - only she has transformed it into this:

I am wearing it in the picture above - with NO HAT, Candy! - but the lighting is better here.

She said, "This is for you. Only on one condition: you never wear a hat with it. I want it to remind you of how beautiful you are." Once again, I was speechless, but with tears in my eyes this time. I was overwhelmed by her thoughtful and kind gesture. I knew how many hours she had spent working on this scarf, and I was honored that she would give it to me. Yes, it was a beautiful scarf, but the real beauty was right there in front of me: Candy. A kind, selfless act from a practical stranger.

I've heard from other cancer warriors what this is one of the positive things about their affliction: that they discover how many beautiful people there are out there - (That's got to be one of the best parts of having brain cancer <---Can you imagine starting a sentence like that? 7 months ago,  I sure couldn't) - so many kind, selfless acts over the months since I've been diagnosed, I can't even begin to name them. I told Steven I wanted to send thank you notes to everyone that have lifted us up during this challenging time, but I was so out-of-it in the beginning, how do I go back that far and begin? I know I would forget some people and feel badly. He said I was ridiculous, and that nobody could expect us to do that.

But I want some way to convey the gratitude for every beautiful person out there (Kiddies, that means all of you!) , whether you sent me a card or an email or a squirrel or bracelet...or dropped by dinner in the early weeks (you have no idea how much that helped our family!). The donations to our Family Medical Fund and more recently the donations to our American Cancer Society, Relay for Life Team. Comments written on Facebook and here...and all the pictures of people Wearing Gray for May to increase awareness of Brain Tumors. Steven and I attended the Livermore Valley Wine Auction this weekend, and so many people came up to me to hug me and offer their prayers...(Phew! It's a good thing you can't see the tears rolling down my cheeks right now...)

Dinner at Wente with Super Schmoopy AKA the Bald Hottie at the Livermore Wine Auction

Believe me: every little gesture of support means so much to me and my family. This disease has unexpectedly opened my eyes to how many beautiful people there are in the world. What a gift. So, thank you, Candy, and all the other beautiful people out there. I would send a handwritten card to each and every one of you, but I'm playing the #cancercard right now. #freepass This is my handwritten card just for you.

Love, June Xoxoxo #mfbcfnw

______________________________________________________________________

P.S. The only thing more beautiful than you is my granddaughter, Autumn Elizabeth. #sorrynotsorry

Autumn with "Mimi", the stuffed animal "Grandpa Steven" picked out for her in a little toy store in Paris.

P.P.S. FYI: We are already booked to do another river cruise in 2016 down the Rhone. Click on this link - Ama Waterways <---- if you are interested in joining us! If you don't know where the Rhone is, Google that Shit. Whoops, I almost made it through a whole blog post without cursing!

The One in Which I Went to Paris

I had been to Paris, France three times before this trip, but never with Steven. Crazy, right?

Charles de Gaulle christened my new passport!

1) The first time, I was about 14 years old (there's a mini-debate about the actual year, which could easily be resolved if anyone cared to look in any of several documents, but it's a family thing. You know...) I have no insight as to why my parents planned this trip, but I'm sure that's where I got my wanderlust. In fact, I was scheduled to attend a celebration of my dad's 75th birthday in Paris with them and the two oldest grandchildren in the first week of November 2014, but then I was diagnosed and had a craniotomy in the end of September, so THAT didn't happen quite as planned...

2) I spent a semester of my junior of college in Aix-en-Provence, France, and I flew in/out of Paris. If you don't know where Aix is...you know what I'm going to say...all together now: Google that shit! And everyone who is reading this that is in college or going to college soon (I apologize for the cursing...) Go for a semester abroad! I'm not messing around. Do it.

3) After I graduated from college, my parents gave me the most amazing gift of tickets to Paris and a Eurail pass. That pass let me get on pretty much any train in Europe and just travel for about 6 weeks! A-MA-ZING!

And then there was a little gap in my travel...okay, I didn't go back to Paris/Europe again until....2 weeks ago. Why? Well, there was this little thing called LIFE - a marriage, four kids, back to school for two years to get my teaching credential, a full-time job teaching...Don't misunderstand. It wasn't the time that was a factor. It was $$. We always chose to spend our $ on other things. We traveled within the U.S., but Steven and I had never been out of the U.S. together! Crazy to think about!

Then an opportunity came up: Steven was asked to do a Winemakers Cruise on the Seine with AMA Waterways.   
Kiddies, let's see if  you have been paying attention...the answer to "Would you like to do a river cruise on the Seine for a week?" is always what?
YES!!!  
Oh, goody! You ARE learning some things from me!

So, we said yes - geez, probably a year ago exactly. And all was hunky-dory and we were very excited, of course...And if you've been paying attention, at that time in 2014, I thought I was going to go to Paris twice in one year! Score!

Then I was dx'ed with GBM in the end of September 2014. The November trip was off the table. <sniffle, sniffle> and I wasn't at all sure that I would be able to go in April. A little insight here: When someone tells you that you have Grade IV brain cancer  - something that's nicknamed "The Terminator" - you aren't at all sure about anything. Like, at first, should you make an appointment to have your oil changed next week. No joke.

But I survived the first 30 day treatment, and I had follow up appointments with my doctors in January when I started my Temodar routine.  At my February follow-up appointments,  we asked about this Paris trip, and they said, "Why not? If you're feeling well enough at that point and things are still looking good..."  Well, slap my ass, and call me Sally! Okaaaaayyyy!  Game on!

My MRI in March was stable, and so I was off to the races! (See what I did there?) I packed a gigantic suitcase and got ready for our trip. The rest of this blog entry I'll answer the burning question: Is it different to go to Paris living with cancer? If you want the short answer: Well, of course it is, silly! Everything is different living with cancer. But that doesn't mean that it's all bad.

My plan was to go full-baldy the whole time - for the first time. I didn't even bring my wig because I didn't want to chicken out. What I didn't count on is being cold most of the time! Eek! (One of my anti-seizure meds makes that happen.) But thank goodness I brought some hats. Bald heads get cold! Steven says so, too! I have so much sympathy with baldies everywhere! But I did go baldy as much as possible:

The first night, they planned to embark by 9-10 p.m. so we could all see "a surprise".  They sailed the opposite direction a little bit so we would have a good view of the Eiffel Tower when it lit up.

We were using our lame camera phones so it doesn't look nearly as pretty as in real life  -- but isn't that true about everything? In fact, I was dumbfounded when I started downloading our pictures and I realized most of them were on Steven's phone - not my camera or phone! I was just in the moment instead behind the lens like I used to be!  (Remember when I said some things are different living with cancer? Exhibit A) And guess what? There are a fair amount of pictures of me! Go figure!

After the fanfare of Paris and the Tower, things settled down. We were sailing through Normandy - which I had never been on my previous trips. And as a certified History Geek, the only real images I had in my head was D-Day and the beaches. But Normandy is a region that I bet you could find a cat riding a unicorn with a rainbow in the background if one exists...which is to say that it is gorgeous - in an other-worldly kind of way! Why do we make these crappy looking houses in the U.S. when we would have stunning homes made of stone and wood?  
Look. at. this. beautiful. home.

 And. this!!!

I highly recommend this cruise down the Seine! Although, if you are living with cancer, you might want to pack  more warm clothes...

Notice the man behind me without a jacket on...just for perspective!

 Okay, it wasn't ALWAYS that cold!

Also, I slept a lot. Daily naps are really important to me, and we were walking and on our feet a lot every day. In fact, we missed entirely all three possible guided tours of the Chateau Gaillard (Google is your friend, people!), but when I got up, we decided to go rogue and do our own tour. We had to hustle up a hill to see it, but it was fine and we even had time to walk the quaint streets of Les Andelys.

View of Les Andelys after trek to Chateau Gaillard

The Ruins of Chateau Gaillard as seen from ship - It was worth the walk to see the "real thing"!

Oh, and every day, Steven did a 45 - 60 minutes winemaker presentation, which were very well-attended. I was supposed to keep him on track so he didn't go over an hour. I'd set my phone timer and every 10 minutes, I would put a "10 minutes" to signal time spent. I think our signals were crossed because I'm pretty sure he interpreted that as "mambo dogface in the banana patch..." (Sorry, Steve Martin 70's reference for all you wild and crazy guys and gals out there!)

We had ~24 Steven Kent Winery club members sailing with us, too, and it was awesome to get to know them all better. We had the pleasure of having meals with many of them and tours. I won't post their pictures on here because I don't have their permission, but if you happen to be reading this and are okay with  public posting, just shoot me an email: junemirassou@gmail.com. In the meantime, y'all are going to have to use your imagination! haha!

The most anticipated stop for me on this trip was the beaches of Normandy. Now that I've been there, I almost don't want to post pictures of it all because there is no way to capture the feeling you have when you're there. Imagining these young men - boys, really  - being dropped in the water or falling from the sky to try contend with what they'd been sent there to do...it's hard to even think about...

9,386 Americans are buried in this cemetery in Normandy. It is estimated that there were 135,000 American casualties total as a result of the Normandy invasion. Let's all take a moment of silence and gratitude, shall we?

After Normandy, we turned around and started back to Paris. We ended up four full days there, but that's when I think all that activity started to wear on me. And it was a challenge to time my medications and meals because my meds made me sick on an empty tummy. I just want to make it clear that I am NOT complaining about my trip to Paris. As I said, I'm just trying to explain what I said in the beginning: how it was different with cancer.

I had pictured that Steven and I would visit all the major sites: Eiffel Tower, Louvre, Musee Picasso, Notre Dame, Versailles...followed by romantic late nights in bistros or wine bars. But it quickly became apparent that I was capable of about 4-5 hours of walking. (If you haven't been to Paris before, it is a walking city. there is also excellent public transportation, but since I've been there last they added this RER to the Metro system, which is sort of like BART in the Bay Area? And truth be told, part of Paris is seeing the streets. Check this out! Steven even got all artsy and took these pictures:

We managed the Musee Picasso - which is amazing, but overwhelming, and the de L'Orangerie which has a room with four enormous panels of Claude Monet waterlilies - breathtaking! And we did end up using the RER/Metro to go to Versailles because I was adamant about Steven seeing it.

In the gardens of Versailles - I call this my Inspector Gadget look. Don't blame me. Steven picked out the hat in a vintage store in Le Marais, and he kept declaring how "awesome'" it was. Xoxoxo

After all the activity of the day, I was barely able to stay up until 8 or 9 p.m. and a couple of times, I think I skipped dinner altogether. There were no late stops to wine bars, although I think Steven went down the street from the hotel to one once I was asleep.

Kiddies, I never lie to you, so I'm going to confess that I had at least two complete emotional breakdowns because I felt it wasn't "fair" to deny Steven all that Paris had to offer because of my lame physical weakness. He brushed my tears away and reminded me that all he wanted was to walk the streets of Paris with ME, soaking it all in. And that's what we did. 

The thing I'll remember most about this trip is that I spent thirteen days, pretty much all my waking hours, holding my husband's hand. And every once in a while, he'd pull my hand to his lips and kiss them softly and say, "You know, I love you." And I'd say, "I love you, too." and he inevitably would counter with, "No, I REALLY love you." or "Not only do I love you, but I'm IN LOVE with you."

The One in Which I Show You a #NoHairSelfie in Honor of #WorldCancerDay

Today, I had planned to write a pretty frothy blog about the many hairstyles of June A.C. (after Cancer), as Steven and I have taken to calling it. Kiddies, there's a B.C. and A.C., an invisible line drawn through out lifelines now, as there is for any Cancer Warriors out there. I wish the AFTER Cancer part meant "After Cancer was GONE", but "it is what it is", right? 

Guess what? It's #WorldCancerDay! Which does not sound nearly as much fun as #WorldSkipWorkDay or #WorldSandBetweenYourToesDay, .... Bummer. Sorry. It is an important subject, and it's bitchin' that they have a day dedicated to all cancers - not just the one which is covered in pink ribbons and glitter...(The designated color for brain cancer is gray...but I'm not bitter about that at all...)

Yes, it's #worldcancerday, but I discovered a loophole that allows me to go ahead with my plan while (hopefully) still maintaining the intention of today's designated honor!

As PART of this day, there's a very special hashtag: #nohairselfie. You can shave your head and share it on social media with that hashtag to raise awareness. They even have an app so you can "virtually shave and share" (Oh, the modern world!You crazy kids and your technology!) It's a Canadian campaign, but it's WORLD Cancer Day, Not National Cancer Day. and Newsflash! The internet is international!

And/or you can donate $$ to support research for a cure, etc. <---which I personally think is the way to go, but I'm not going to be pushy here. See links at the bottom of the page for suggestions for donations.

Click on the link if you don't believe me!

So, this little coincidence is totally cool AND saved the day, because it allows me to stick to my original plan to write about ... 

June A.C. and her many hairstyles! While still supporting World Cancer Day!

Win-win!!!

But let's get down to some serious business, shall we? Hair. When I was diagnosed with brain cancer, I had long, thick, wavy hair - the kind that took 45 minutes to an hour to wrestle under control when we got ready to go out. There was shampoo and conditioner, and styling cremes, and a blow-dryer and straightener AND curler. Yes, indeedy, ladies and gents! Women sometimes actually straighten their hair before they curl it. Back me up on this, Ladies! Sounds crazy, but it's true.

And when I was going to start my treatments, Donna (The P.A. who ran my Chemo Class), kept saying that the chemo I was taking would NOT cause my hair to fall out. The radiation team DID say that I was going to lose my hair, but "only in the places that I was receiving radiation treatment, so I probably would have "patchiness" .

People asked me how I felt about losing my hair in the process, and I always said the same thing: "My hair is the LEAST of my problems at this point." Which is true when your dx is Stage IV brain cancer. So, I didn't give my hair a lot of thought, honestly.

I had NO idea what that was going to look like, but I knew I wanted to be proactive and cut off a lot of my hair to 1) prepare for the inevitable and 2) donate to Locks of Love. So, I did...

And prepared for the "patchiness" about 2-3 weeks into radiation treatment.

Yeaaaa... about that "patchiness"?  This is what "patchiness" has meant in my case...

I think this counts as a #nohairselfie, don't you?

Excuse me for being a little nit-picky here....but that's not what I call "patchy". That's some Alien Crop Circle shit up on my head. But I'm not going to shave-shave all of my head. Not because I'm vain.... BAHAHAHAHA! <wiping tears from my eyes!> Do you not just see the pictures I have shown you??? Vain? <snortle!> The reason I'm not going to fully shave is I have heard that it is a 1) a huge pain in the ass to keep the smooth shave maintained and 2) you cut the crap out of your scalp using a regular razor instead of an electric one.

OH, but before I forget: huge props to my husband and brother who actually DID shave their whole heads, voluntarily, in solidarity with me:

Sorry if Steven's t-shirt offends you. #sorrynotsorry #fuckyouyoufuckingfuck #juneisfeelingfeisty

 So, for now, I'm using an electric razor to keep the patch of "sod" short while my little seedlings start to grow in. That's about what it looks like right now. I only shave that pathetic little patch in front - poor thing - so that it doesn't stick out when I wear a wig or hat.

My Options:

I have a wonderful collection of hats - thanks to some very generous June's Warriors:

If you happen to walking Communications Hill at the same time as Steven and me, you probably recognize these. Or if you stop unexpectedly at my house. Or basically 90% of the time. Hats rock!

If I'm getting fancy, I have my Fun Wig:

What better excuse to have purple hair???

or my more "Sophisticated Look":

This is a Raquel Welch Wig - which even *I* had to Google because I knew her name but couldn't think of one thing she had been in...sorry, Raquel. I like the hairstyle, though!

But I think my favorite of all is the hybrid Raquel-Tigger Look, which I only pull out for special occasions, OBVI! Like my head is cold. Or Tigger is feeling bouncy...fun, fun, fun, fun, fun!

So, if you're having a crappy day and sick of the snow or your boss is being an asshole... or WHATEVER is getting to you today...I have a gentle suggestion for you:

Maybe go to nohairselfie.com and download one of those apps and virtually shave your head. Have a good chuckle and post it on twitter, facebook. and/or instagram. Don't forget the hashtags: #nohairselfie and #WorldCancerDay.

And think about how it's just fucking hair...or snow ...or an asshole boss...

and it's not CANCER.

Because Cancer? It really sucks. And we always, always can find something to smile about. But we really need to support research to find a cure.

_______________________________________________________________________________

There are a ton of places to donate to the cause. Here are just some links to get you started:

American Cancer Society

Stand Up To Cancer

The One in Which I Explain About the Rabbit Hole

I read a blog post that really hit home for me yesterday. It's called Tied for the Worst Feelings Ever from the blog, The Liz Army. Liz is one of the bloggers that I've discovered online through twitter - (and I have a link to her blog on my website under "Other Brain Cancer Warrior Blogs" if you want to check them out at the bottom right of this page.)

Connecting with other people that are sharing my challenges and experiences is really important to my healing...and sanity, I guess! Sometimes I feel like I've slipped down a Rabbit Hole where nothing makes sense. Reading someone's thoughts and feelings and thinking, "Exactly!" makes me feel not so alone and crazy.

Well, yesterday, Liz's blog entry hit me square in the stomach ...and the heart. Because she said,

Tied for worst feelings ever:

• People assuming you beat cancer when you haven’t.
• Reminding people you still have cancer and making them cry.

Over the past week the following things made me feel real shitty.

<Thwunk> Exactly, Liz. I know exactly what you mean.

I recently had the wonderful experience of spending the holiday week with my family - all of my kids and  my mom, dad, sister, brother, his significant other, my niece and her family... It was a very special get-together that I will never forget. But included in that experience was a number of difficult, one-on-one conversations with members of my family in which I had to be brutally honest with them about my life and my future. Because I realized that they hadn't quite "got it"-  what it is like to have GBM and LIVE with cancer.

It seemed cruel and inappropriate to let them assume because I look healthy - albeit bald -  and I'd finished my (initial) treatments, that I was going to be "okay".  They needed to know that, down the Rabbit Hole, "okay" means something entirely different.

And then nearly every day, when I share my current experiences/treatment, I get responses like, "You are 'doing it"!" and "Keep it up!"  --- meaning I am "beating cancer".  And their hearts are in the right place - they want to be encouraging and supportive.  So, I end up feeling "really shitty", as Liz put it.

Because I have to be the black cloud that says, No, I'm not "beating cancer".  Because don't forget, we've slipped down the Rabbit Hole where nothing makes sense in the normal context:
You have a disease. You seek the very best doctors and the very best treatment. Ipso Facto: You're cured, and you go on your merry way...

And yet...this disease doesn't go away. Living with glioblastoma multiforme (GBM) means just exactly that. LIVING with it. In my body. In my brain. Indefinitely.

I didn't invite it to the party, but it came just the same. And it will. not. leave. 

It's the strangest damn party that I've ever been to - and if you come along, too, you need to know the straight-skinny about this uninvited guest. Because it's here to stay. The best that we can hope for right now is that it behaves itself and doesn't make a scene.

Earlier in my diagnosis, I wrote about how I might be living with cancer after my initial treatments, meaning that there was a chance that it would all be gone. But that was about me, wanting to put that positive energy out there.  Not wanting to focus on the negative. Can I envision a time that GBM will actually be eradicated from my brain? Yes. I can.  Maybe miracles do happen? Maybe they will discover/develop a cure in my lifetime? It could happen. And I believe there is merit in that mindset - focusing on the positivity and sending that out into the universe. 

But it's also important that people realize the HERE and NOW of our situation.What it's like to slip down the Rabbit Hole...


This is how Liz put it:
...saying I “beat cancer” diminishes all of the crazy I deal with every single day. From planning for retirement, to advance directives, to adventurous vacations, to home buying, Brett and I weigh every decision in the light of me being a person living with brain cancer. Our future is murky and uncertain when it comes to all things Liz.

And this is why Liz's words hit home so much for me. Likewise, Steven and I (my whole family) are dealing with big decisions that come with the WHAT IF's of my disease: How do we try to stay in the present and "suck the marrow out of the life" while still being responsible about our uncertain future? We need to make plans, but let's just say that we're not buying any non-refundable tickets. That can mess with your head.

In a nutshell, how does one actually LIVE with brain cancer?  I think that is our most daunting challenge here.

I'm just thinking aloud here... but maybe "beating cancer" isn't the same thing as eradicating cancer or killing it? Maybe deep down in this Rabbit Hole, "beating cancer" is learning to live with it at your party (LIFE) and having a fuckin' rad time anyway?

Cancer is one unruly, batshit crazy guest, no doubt about it. It's like your wacky, alcoholic relative who comes for dinner, gets wasted, and ends up spewing political rhetoric, and spilling wine all over the table...
 <eh hem>
I'm imagining...hypothetically. Because of course, I have no one in my life like that...

But it is OUR party, and cancer is just the uninvited guest. No doubt, it has an influence on how things go, but one thing it can't do is decide how you react to it. For me, the first step was to stop pretending that it was just going to leave. So, now what? We're still figuring that out.

Yep. Teachers have to dress up for Halloween, too! (2011) Guess who's the crazy Queen of Hearts??

But it's really important that anyone else that comes to our party understands that Cancer is going to be there.

So, might I suggest this little ice breaker:
Welcome! That's Cancer over there. She's living with us. Just so you know, she's one crazy-ass bitch, but we're getting used to her. The party's over this way....

The One in Which I Walked The Hill Alone for the First Time Post-Dx

Yesterday, I strapped on my running shoes and went for a walk by myself up Communications Hill! What's the big deal, you say? Well, let me start from the beginning...

The walking part isn't new - I've been walking with Steven almost every day since I was released from the hospital - even before, I guess. After my surgery  - (actually, I think after almost any surgery?) -  they recommend that you get up and start moving/walking ASAP. Steven and I started with the hallways of the hospital, wheeling the IV cart with us. 

I don't have a really clear memory of the walking in the hospital hallways...I wonder why....

Once we got home from the hospital, we started doing a mini-loop around our block...then expanding a little more...and a little more...until we had a 2 mile flat loop. We didn't break any land speed records, but we started a routine.

As part of our new routine, we always hold hands - partly because he's my Schmoopy, and we were are going through a pretty challenging time...but also, I wasn't sure how steady I was with all the meds I was on. And also, if you remember, I was still having focal seizures on the left side of my face multiple times a day. At first, we would stop and stand there, Steven holding me close while I breathed through the seizure. But it got to the point where I was walking right through them - pointing to my face so Steven knew why I had suddenly stopped responding in the conversation.

Then we get hooked up with Dr. Awesome McAweseomesauce who found the right cocktail of meds to stop my focal seizures all together.
<insert angel choir singing>
....and I continued to heal and recover from my surgery, getting stronger every day....
until one day, I brazenly suggested that we "do The Hill" - which used to be a regular part of my fitness program. Woot!

Communications Hill is a little bump, really, that is about 1 mile from our house and a mecca for fitness enthusiasts because it's got this set of steps that draw exercise fanatics (and assorted other folk, apparently) from throughout the valley - much to the consternation of the neighborhood! Whoops!

This is the "bottom" set of stairs. There's another set above this that leads to the top of The Hill.

You don't need to "do the stairs" to get the benefit of The Hill. It's a lovely 1-1/2 mile loop with a max. elevation of ~350+ feet (I googled that shit.) that gives you expansive views of South San Jose and the Santa Cruz Mountains.

So, Steven and I expanded our routine to go up and down The Hill.

Baldy Couple on the Hill!

 Of course, sometimes, it kicked my butt. And I had to take a long nap in the afternoon. That's when I realized that I couldn't do the Hill every day. Especially once I started radiation/chemo treatment. I listened to my body - and some days were flat loop days, some days were Hill days, and some days were, "Hell, no! I'm going to nap for 2 hours!" days.

Kiddies, Hill Days are the best days. DUH!

I have to add this seemingly insignificant little detail because it matters later. (Kiddies, this is a literary device that's called "foreshadowing".) Walking The Hill from our house involves a nice flat mile in a neighborhood followed by an absurdly long traffic light wait to cross over to access The Hill.

Have you ever thought about how differently people may feel about these images? And WHY?

 I'm going to let you in on a little secret: Y'all now by now that I'm a Type-A/Rule Following Kind of Gal.  Steven is...how shall I put it? A Scofflaw? Now, that's not very flattering, is it?  Let's say that he is way more of Risk Taker than me. And he thought it was ridiculous that I would WAIT at the corner for the Happy Little Person Light to indicate that we could cross the street. Even if we arrived just as it turned to numbers counting down, and there were no cars coming.

I had to have a serious conversation with him to get to understand the underlying fear that I had about it. I'm a person with: 1) a seizure disorder and 2) brain cancer who is 3) in a healing process and figuring out what I can and cannot do. I didn't KNOW if I could cross that street (4 lanes) in 22 seconds, and I didn't want the pressure of a zooming oncoming car - even if there were none in view -  to add to my stress. After my explanation, he did understand and we wait...and wait...and wait until the Happy Little Person Light says it was safe to cross. Phew! Back inside my comfort zone!

And that's pretty much how it's gone for the last 3 months - daily walks with my Schmoopy, hand-in-hand, talking about Life, Love, and the Pursuit of Happiness...and oh, yea...cancer. I don't think I've managed to take a single one of these walks without crying a little bit. It's like therapy. And both Steven and I have said, in a strange way, our relationship has never been as strong as it is right now.

I'm currently done with my initial treatment of radiation/chemo and awaiting the results of my first post-treatment MRI. Still definitely recovering - I have stronger days and tired days, but overall, feeling very healthy. And Steven is feeling confident enough to get back into the swing of things at work, etc.

Yesterday, he had a club release at the winery - a long day which meant no walk for us unless we did early in the morning. Which we didn't. So, I put on my big girl panties, and I said, "Self, today is the day that we're walking alone. And you know what, Self? I'm feeling pretty ballsy, so let's do The Hill!"

And that's all it took. I was a little nervous at first, because it felt so strange to be walking without Schmoopy right by my side. But the more I walked, the more giddy I became. And guess what? When I came to the internably long traffic light - the Happy Little Person Light had turned to numbers...and guess what I did! I picked up my pace and actually jogged a few steps to get across before the numbers were all counted down. I giggled, imagining Schmoopy saying, "Well, look at you, you Scofflaw!"

I chugged up that hill, and took in the view, said, "Hello!" to all the freakish dedicated fitness peeps on the stairs, and stopped to take a few pictures at the top.

I looked like this:

But I felt like this:

And because I was so restrained and didn't curse in this whole entry...

[Do "shit", "ballsy" and "butt" count"? Nah!]

 I feel like it is entirely appropriate for me to say that I am imagining that I'm shouting here:

Carpe Fucking Diem, my friends! CARPE. FUCKING. DIEM!

 _____________________________________________________________________________

P.S. I'm not giving up my therapy walks with Schmoopy, but it sure feels good to regain some of my independence and confidence.  Next up: getting my Driver's License back!

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!