The One That I Waited Until After Thanksgiving to Write

I had my latest MRI scan last Monday. Surprisingly, my radiologist was in his office on Wednesday rather than in his car, driving to some family Thanksgiving gathering. And he called. He was going over our latest scan report and wanted to let us know the initial results. He's always been so good at understanding that a couple in our position is on pins and needles until we hear something. What he did not know is that Steven and I had decided to NOT pursue the results until after the holiday, so we wouldn't be distracted or distressed if the news were not good. But he called, so there ya' go. In the end, I decided that it was better to hear, rather than stick my head in the sand.

 Ninjas don't hide from the truth. They face it straight on.

And son-of-a-bitch, the news was not good. They've seen another change between scans. (I think I hear a collective sigh and a couple curses from my potty mouth soulmates.) But hear me out, and I think you'll feel at least a little better in the end. Or not. It is what it is.

This scan is different because the enhancement or "growth" is not in the primary location where my tumor was resected, but in the secondary location which was only discovered after surgery when a post-surgery scan was done. It was hidden/obscured before the resection and has been in debate and an unknown all along. It could have been just scar tissue from the grand mal seizure, and then the enhancement is radiation necrosis from the radiation treatment? Or it could be a secondary site of the disease. It was looked at closely by both the Good Samaritan and the UCSF Tumor Boards before my treatment began. Once again, the only way they could know for sure what it is is by doing a biopsy = craniotomy. Which no one would ever do - unless I had neurological symptoms that required it. And the good news is I don't appear to have any new neurological symptoms.

[Kiddies: FYI - No one opens up the cranium casually. It's a pretty big deal, so if someone on the street says, "Pssst! Hey, do you want a craniotomy?" Run away. They are not a good person. Didn't your mom or dad ever teach you about stranger danger? Geez-a-louise!]

Kiddy Recap: Just say NO! to candy, puppies, and craniotomies from strangers. Got it?

What we did know is that this secondary site has been very stable (until now).
Reminder: My radiologist took a great deal of time and energy working with the Tumor Boards' recommendations and collaborated with the oncologist and neuro-oncologist to decide what exactly my radiation treatment would be a year ago, and if he would treat this secondary site. The answer was ultimately "yes". Again, no one radiates an area casually, but IF it were cancerous, it was better to take care of it at the same time as the primary site was treated. So.....just like the primary site change of last month's scan, this change might be scar tissue from the treatment (radiation necrosis,) or it might be progression of the disease. The new scan and my case will be reviewed by the UCSF Tumor Board next Thursday, and we will meet with the neuro-oncologist on Friday.

That's all we know. Period.

The last couple of days, I've had this image of walking along and suddenly being confronted with a dark crater. I know that I eventually have to step in that hole and see what happens. It could be a small hole, and I could land on my feet unscathed. Or it could be a very deep, unfathomable hole where I plunge further and further down waiting to find out what happens when I land, crumpled at the bottom. Dazed by the journey, perhaps with serious injury , but hopefully alive.

We told the our family about the situation - that's what we're there for, right?  - to support and love each other.  But I opted not to "go public" until now. No sense in having other people have their Thanksgiving clouded with uncertainty. And I know some of you lovely June's Warriors would fret and get bummed out. Because you are so lovely and empathetic. And I love that about you! <smooches!>

So,  I have tried to avoid going near the crater for the last two days.

  Picture me strolling along in the vineyard with Steven and the doggies, whistling a happy tune and saying, "la, la, la...what hole?", carefully scooting around it....

Or Steven grabbing my hand and gently leading me away from the thing.

My mantra, as you know, is: Worrying won't change the outcome. And just as a reminder:
we have no idea what we're even dealing with right now.

The last few days, I've so enjoyed my family and all the conversations, hugs, kisses, and LOVE that I was lucky enough to be surrounded by. I soaked in the beauty of my children and my granddaughter - their love for each other and me.  (I'm still waiting for pictures of the actual Thanksgiving dinner, so I'll share some other family pictures for now...)

Gratuitous picture of my granddaughter, Autumn. - This might become a regular feature of my blog posts.

I looked, in wonder, at my parents and my brother...

Steven captured this moment on Wednesday, watching the sunset on our patio in the c-c-c-cold with my Dad, Mom, and brother, John.

...and all the rest of the lovely people around the Thanksgiving table and thought we are all so lucky to have this moment, right here. To gaze into each other's eyes and feel so embraced by each other. Precious gifts. I just "walked along" in life and ignored that shadowy hole in the background.

There's a form of torture (I bet it has a technical name, but I don't want to google that shit because that doesn't sound like something I wanted to be imprinted in my brain. And  it will probably lead me to disgusting sites about the Nazis and other loathsome, hateful groups.) But the technique involves making a person wait - not knowing exactly what their fate will be - but instead having them envision all the awful, gruesome things that might be ahead. As I think about it...Who needs google? The technical term is: Mind Fuck, right? As the name implies, it all starts in the mind. I can't control what is happening in my BRAIN right now (for the most part, but that's a discussion for another day), but I CAN control what's happening in my MIND.

I do know that when I have to approach that shadowy crater, Saint Schmoopy (He was canonized this week, if you missed it.) will be by my side. We'll take a deep breath and step in together, as we've done every step of this journey. And with my strong, brave, and loving children, and the unwavering support of my family, and YOU, I will face whatever comes our way. Step by step. After all, that's really all we can do, isn't it? Be brave with me. Yes, it helps!

Love,
June Xoxoxo #MFBCFNW

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 Think We Should All "Get a Life!"

It's interesting. I've been thinking about this blog post for a long time. And avoided it. My heart is beating faster now as I get close to posting it. And then I think to myself, what kind of world do we live in where I'm more afraid of speaking my opinions than having brain cancer? So, I'm speaking my truth. The consequences can't be worse than having brain cancer, right?

When I was a freshman or sophomore in high school, I took a class called Ancient Civilizations with Mr. Burns. I have such a vivid memory of the first day of that class which I shared with a H.S. friend recently  - and she had it, too, so it must have been his First Day Tradition, And as a teacher, I appreciate First Day Traditions. Here was his:

He entered the room dramatically, grabbed a piece of chalk from the tray and wrote in letters 3 ft tall across the whole board: "FREEDOM VS. SECURITY".  He then proceeded to tell us that everything we were going to learn about these civilizations - characteristics of any civilization  - were related to the people's decisions about how they balanced these two very important principles.

I loved Mr. Burns' class - he made me think and helped inspire me to give a shit about what was going on in the world. In fact, one could blame him for my quasi-arrest (underage so supposedly expunged?) for painting "U.S. Out of El Salvador" on the high school wall in weather-beater paint...in 3 ft tall letters<--coincidence, or something more?  That's really not fair to Mr. Burns, is it? I really have to shift the blame to my co-conspirators, Pam H. and Mette!

Okay, I can't blame him for that, but he is definitely the reason I knew about El Salvador . And he, no doubt, contributed to my decision to attend college in Washington, D.C. and ultimately get my B.A. in International Politics.

I've never shared my political or religious beliefs with my students. Maybe it's because I taught in elementary school. I've always thought children, until they get out in the world, either 1) believe everything their parents believe or 2) believe the opposite of what their parents believe, just to piss them off.  One kid in Mr. Burns' class screamed, red-faced, at me, saying, "So, you think all Americans should become Commie Pinkos like you!?!" Seriously. "Commie Pinko".  Okay, I was going to school in the late 70's, early 80's, so I'm guessing he learned the term "commie pinko" from his parents. And his extremely harsh reaction was in response to my questioning whether it was fair that so few people could have so much in this country while others struggled without adequate housing, food, etc. Not exactly a radical concept, is it? Or maybe it is. People still argue about it to this day.

But I'm not in a classroom anymore, and I am going to let 'er rip this morning. If that offends you...#sorrynotsorry Sue me. I'll probably die before the suit goes to trial. And guess what! In America, we have this thing called FREEDOM OF SPEECH, and that trumps your "I'M OFFENDED THAT YOU DON'T BELIEVE THE SAME THINGS I DO." gut reaction. I love America, in all it's imperfect glory. And the U.S. Constitution - which was always intended to be living document. (If you don't know what a living document is...I HOPE you're not a Supreme Court Justice, but at any rate, there's always the internet to help you out, right?)

If you don't want to engage in a civilized dialogue about my life-long principles [Hint: I was called a "commie pinko" once in high school] , feel free to just shut this window right now and go on with your life. Doesn't that feel good? Having the freedom to do that? Or if you want to know more about what rolls around in my cancery brain, feel free to keep reading. Warning: I'm feeling fiesty!

The Basic Principle:
I believe that people should have the freedom to do what they want to do in life as long as it is not hurting or endangering other people (security - Thank you, Mr. Burns!). I know there are a lot of issues that are a lot more complicated for this philosophy to really work. But it works on a lot of levels. And I'm "going there" - like I never would on Facebook. In my personal opinion, I believe that Facebook should be a happy place, like Disneyland with cat videos and pretty photographs, and "liking" a bunch of stuff!

A Few Examples of Freedoms that I Don't Believe Hurt You:
People should be allowed to practice their religion where ever or whenever they like. It's none of your fucking business. Unless they plop themselves down in the middle of the street and endanger themselves or other people. I was in the park with my daughters and granddaughter the other day, and as the sun set, three Muslim women descended onto their knees to pray. It makes me sick that there are people in this country that would think that they had ANY right to limit these women's right to do that. Now, if you're a pedophile that has religious beliefs that include having multiple wives that are underage...refer to the previous paragraph. Hurting other people? Yes! No bueno.

People of the same gender should be allowed to marry.  This one enrages me - and don't tell me it's because I have close family members that are gay. I've ALWAYS felt this way. How can you say a loving, committed couple of any gender has ANY impact on your own marriage? You should not get to have ANY say on what they do. It's not impacting your freedoms in anyway whatsoever. It's about LOVE, people. LOVE IS LOVE! Again, if it's not hurting you, Shut the Fuck Up and worry about yourself. Rawwwwr!!! <---That deserves a roar for extra emphasis!

First Same Sex Couple married in NYC  (together for 23 years before)

Another no brainer (no pun intended): Marijuana should be legalized. Period. But let's just start with medical marijuana. Do you know that Colorado has found marijuana to be extremely effective at treating seizures? I asked the neurologist at UCSF about it. (Because I take 6 pills a day - 4 of them very heavy duty anti-seizure meds.) He said they were starting a clinical trial for pediatrics but weren't planning on a trial for adults. You know why? It's "too sticky a political issue". Again, how is the fact that an adult is smoking weed harming or endangering you??? I call bullshit. Yes, we have medical marijuana in CA, but without real clinical trials, we don't have a medical community who can prescribe the right amount or the right strand to get maximum help.

Now, let's just talk about recreational use of marijuana. How is it any different than all you out there, enjoying wine, bourbon, or beer to have a little "buzz" going on? How is it hurting you? I bet you there is much more danger involved in criminalizing marijuana than having it be legal. In fact, I know there are statistics out there about more danger in drinking than smoking. Not mumbo-jumbo statistics. Real science.

I know that I'm not going to change anyone's minds about these issues by writing this. I know that most people have pretty much closed their minds to other ways of looking at things by the time they're ...what?  sixteen? It's a shame, really. But probably true.

Some of you may stop reading my blog because I dared to disagree with your philosophies. political, or religious beliefs. And that's a shame, too.

Blame it on the chemo drugs...or the 100th fucking meme about the Starbucks cups that I've seen on Facebook. I couldn't keep quiet anymore. The fact that the holiday cups or lack of holiday cups at Starbucks offends you in some way. I've got some news for you:

It's not Brain Cancer! Or any of the other diseases or tragic, unexpected events that rob us of a loved one forever.  It's not any of the things that really matter.


GET A LIFE! And treasure it instead of wasting time judging others about stupid things.
Yes, I said, "stupid things". 

Without knowing me, so many of you have reached out and sent me love and encouragement and prayers and support.. and that's everything. If this makes you change your mind about me and whether you support me and my healing and my recovery, I think maybe you need to do some serious soul-searching. But that's just my opinion. And everyone has a right to their own opinion, right?

P.S. I created this blog originally as a forum to talk about living with cancer (and trying to survive).One thing that's come out of it is that I'm realizing that living with a terminal disease gives you a certain freedom to be truly yourself. It's a shame that it had to come to such extremes to realize that. This obviously isn't my whole "truth", and none of what I've written before today is untrue. So, why was I so afraid to post it? I'm not sure, but that's why I finally did it. <deep breath as I hit "publish">

Fear is Fake. Live Now. LIVE YOU NOW.

P.P.S. I've decided that I was supposed to born with blue hair. Bright blue hair.

P.P.P.S. I've always preferred Peets. Starbucks tastes too over-roasted and bitter. In my humble opinion. But that's probably because I'm a commie pinko....