The One in May When I Increase Your Awareness

Unless you don't follow me at all on Facebook, Twitter, or Instagram, you know that May is Brain Cancer/Tumor Awareness Month, I'm wearing Gray in May to raise awareness.

I tried to post a picture every day wearing gray on IG/Twitter, and FB, but I was stuck in bed for a couple of my chemo days. But I'm back!

I looked up on wikipedia about May and "Awareness Month"...and guess what? Brain Tumors and Brain Cancer aren't even there!  (They do include Zombie Awareness Month, though, so there's that...And apparently it's Aisha's birthday. Happy Birthday, Aisha!)
According to wikipedia.com, May is:
ALS Awareness Month (United States)[16]
Asian Pacific American Heritage Month[7]
Asthma Awareness Month[17]
Borderline Personality Disorder Awareness Month
Celiac Awareness Month
Aisha Santamaria Birthday <--- ???? (Kiddies, this is why teachers don't let you use wikipedia as a source for research papers)
Mental Health Awareness Month
Haitian Heritage Month
Hepatitis Awareness Month[18]
Jewish American Heritage Month[7]
Lupus Awareness Month[19]
Motorcycle Awareness Month[20]
National Bike Month
National Guide Dog Month (2008, 2009)
National Mobility Awareness Month
Zombie Awareness Month [21][22]
National Foster Care Month
Scandinavian American Heritage Month
National Skin Cancer Awareness Month

That's quite a crowded field, so I'm going to stick with what I know, even if wikipedia is totally lame. Trust me. May is Brain Cancer/Tumor Awareness Month.

Remember a couple posts back, I promised to talk about Brain Cancer & Brain Tumors? Did you think they were the same thing? Not necessarily. Read on!   There are an awful lot of awareness/knowledge out there of the experience of cancer. You or someone you know has/had it. And I'm so sorry for that. Today, I want to focus in Brain Tumor/Cancer Awareness for a minute. So, you can pretty much bet that this isn't going to laugh riot blog entry. Sorry! Today, I'm putting on my teacher hat to spread some Awareness about why Gray Matters!

I know I didn't have a clue about Brain Cancer or Tumors until there was one discovered in my own noggin'! So, I'm guessing you aren't too aware about it...I know I told you NOT to "Google that Shit" months ago...but we (Steven & I) have a responsibility as caregiver/patient to know what cutting edge and alternative/integrative treatments are available out there and the right things to do to prolong my life as much as possible. I have one more chemo cycle in June (assuming that my blood work looks good), and then we have some decisions to make.

So, we don't have any choice anymore about researching the facts. Knowledge is Power. I'm going to share a little bit of what I learned. You, however, have a choice! If you'd rather live in blissful ignorance (and I'm not judging you if you do), just close this window right now, and you're all good.

First of all, there is no known cause directly linked to brain cancer/tumors. Which sucks in some ways because I can't give some magic advice to help you avoid it. (Caveat: There is pretty substantial evidence that seems to link obesity and/or living a sedentary lifestyle to all cancers:  - but you already knew that, right?) Other than that, it's so random!

Something that definitely surprised me is that the majority (63%) of brain tumors are 'benign'. (We are talking "primary tumors" started in the brain instead of migrating from cancer somewhere else in the body.) We usually associate the word benign with not cancerous and therefore not harmful. (Okay, I used to do that, anyway...) And malignant as bad/cancerous, but....FYI: Even if a brain tumor isn't cancerous, mutated cells should not be up in there, taking up space in your cranium, and pressing on that precious organ: your brain - especially if they're growing quickly or in a space that's impossible to get at without injuring healthy brain tissue..  So, they, too, can be deadly. Even if they're not deadly, they mess around with the brain - ya' know the part of you that let's you breath and walk and talk and all kinds or important stuff ...damage to that can cause physical and/or cognitive deficits

I wanted to clarify that because there are a lot of people with "benign" brain are misunderstood Warriors. They can be a VERY BIG DEAL!

No doubt about it, though: Brain Cancer can be very deadly. This is the stuff that I just wasn't ready to look at 7 months ago. I knew if was bad - Hey, I ain't called The Outlier for 'nothin'! But does it matter what the statistics say? It's just numbers. So, let's just take a deep breath and look it over really quickly (or you can be a big sissy and scroll down and shut your eyes during the chart).

My cancer is a glioblastoma multiforme or GBM. (Why do I want to sing "The cheese stands alone..." after looking at that chart? Oh, yea. 'Cause I have a sick, twisted sense of humor.

Pause. Take a deep breath. Take another deep breath. Repeat five times with me:

FEAR IS FAKE. LIVE NOW.

Moving on...(If you need to take a few more minutes, just catch up when you're done breathing and chanting.) 

Or if you still need to cheer up,  play this a few times:

Back to some knowledge:
In actuality, there are 120+ different kinds of brain tumors! And they can grow in so many different locations in the brain. Plus, in the statistics, we're all different ages, and many patients have additional challenging, health issues (high blood pressure, etc) That makes it tricky to compare one person's experience with another.

Some call Brain Cancer an "orphan disease". If 138,000 people are living with a malignant brain tumor, and the U.S. population according to the census.gov is 320,899,806 ...(using my fifth grader teacher math - <eh hem> and my calculator on my smartphone), that's 0.043% of the population. So, I'm glad there's been some attention given to it recently. Some genius with some a lot of grant money will eventually figure out this puzzle, and survival rates will rise as they have with breast cancer and leukemia.

It can be is confusing with a highly hyped 60 minutes segment, a Time magazine cover, and GBM poster child, Cheryl Broyle's on the Steve Harvey show recently. (<---NO! I don't watch that show! I saw a promo! Phew! Reputation intact!) throwing all kinds of information at you which might pertain to a small segment the people with brain cancer/tumors. I think that many of my friends and family believe that we are going to plug into one of these clinical trials and ride off into the sunset, cancer-free. That's not how it works.

Here are some links if you want to research the subject more:
National Brain Tumor Society
American Brain Tumor Association
American Cancer Society

That's just a start. If you have any "hidden gems", please share them in the comments.

Who knows? Someone reading this right now might find the CURE.

Love, June Xoxoxo #mfncfnw <3

____________________________________________________________________

P.S. Just a little helpful hint:  I've noticed that sometimes people say things like, "I have such a bad headache. I must have brain cancer..." <---- I don't find that funny. Not even a little bit. I know they're just being thoughtless, but think about the next time you think about using it. k? Thanks!

The One in Which I Talk About Being the Queen of the Iron Stomach

I do not throw up...

STOP! No, no, no!

Please, don't click to leave the screen! Don't you trust me by now to have a point when I say seemingly inappropriate things?? There's a point to all this, but you have to keep reading to find out.

As I as saying, I pride myself on having "an iron stomach". I don't know why. I have an extreme aversion to vomiting - and I'll use every bit of my will to stop it from happening, no matter how much I feel like I need to. I think I deserve a crown and a title for this, no?

The real one, I want made out of gold and precious stones, of course. This is just a rough idea of what it would like.

 In fact, I have only two real memories of throwing up - The first one is a kind of cute one actually.

Kiddies: Way back when, in the 60's, when I was a little tyke, there were no dvds, no digital t.v. recorder, and not even any VHS tapes! So, when you wanted to watch your favorite show, you had to wait until it was actually being broadcast on t.v. And if you missed you, you missed it. I know! Hard to believe!
 

Well, it was nearing Christmas time and my favorite, favorite, favorite Christmas special was on that night, "The Grinch Who Stole Christmas" (the original, obvi!)

I love that dog!

My mom had made my favorite dinner, lasagna (so, I might have overindulged in that?) but I remember the beginning of the show being introduced on our t.v. as I was dressed in a flannel nightgown and grabbed our huge, green throw pillow and plopped myself on the living room floor on my stomach and settled for the BEST show! Only within five minutes,without warning, I threw up all over that pillow! (Remember, t.v.'s could not be paused at that time!)  To her credit, my mom didn't seem upset as she cleaned me and everything up...in fact, I remember she giggled a little bit - seeing the humor in it all. She's still a sport! Thanks, Mom!

The second memory... involves shots of liquor and a good friend that held my hair back from the toilet. (Thanks, Allison!) But I really don't remember it. So, it doesn't count, right?

I hereby decree that I retain my title as Queen Iron Stomach! 

<Trumpets blare>

That's why when I began my post-surgery treatment for my GBM, my radiologist and oncologist prescribed two kinds of anti-nausea medications, I thought, I won't need these... (Reminder: my treatment was: 30 days of chemo (Temodar)- 7 days a week, and 30 sessions of radiation, concurrently, M-F) The radiation technicians always asked me how I was feeling, and they were amazed when I told them, no. I was fine. A little ginger tea and being careful what I ate was enough to combat the queasiness. I did have fatigue at times, but I listened to my body  - I napped pretty much every day, but tried to take walks - long or short pretty much daily. My doctors were very pleased with how well I was handling the treatments, too. Yay!

After my little rest from the initial treatment and my January MRI, I began the next step in my treatment: Temodar - 5 days on/23 days off as a cycle. Temodar is the same chemo that I took during the whole initial treatment, albeit in a smaller dose. It's a pill form that I take at home right before bedtime, so I (hopefully) sleep through the worst of the nausea. What nausea? Oh, that's right. They neglected to mention that I was going to have a MUCH larger dose of chemo now. In fact, after the ramping month in January, February and March's dosages are TWICE what I was going during radiation. ZOINKS!!! (Okay, I have brain cancer. They probably told me, but I just don't remember.) #freepass

In March (the first month of the new dosage), Day 1, 2, and 3 are okay...Ginger tea, ginger this, ginger that...okay. Day 4 March's cycle, I broke out that anti-nausea meds that they had prescribed way back when. I took it right before I went to bed. Who knows if it made a difference? By Day 5, I surrendered to my bed. I figured if I was able to fall asleep, my body needed rest  - and it had the added plus of making me unconscious to the very real, very intense nausea I was feeling. Day 6 (the day after my last chemo pill), I felt pretty much the same way, and then I slowly started to bounce back.

As I've just written about in my blog, I was in France almost the whole first two weeks of April, so they postponed the Temodar cycle by a little bit. Again, Day 1, 2, and 3, were okay. I was using the anti-nausea meds every night. I don't know if it was because I was jet lagged or that I was unable to really sustain my VERY healthy diet I have here, but this cycle kicked my ASS! I don't know if I should be allowed to retain my Queen of Iron Stomachs crown because I stayed in bed or on the sofa, buried in blankets for two days straight. I never threw up, though? The worst feeling is that you are so sick you can't eat anything and that makes you more sick...

STOP! No, no, no! 

"The worst feeling". Really? Really, June?!?!

Let me try to redeem myself from this lame statement above....
I've got a strategy to help me through my challenging times: 1) I try to learn from my mistakes. I try to keep track of what I've done and the results. Makes sense, no?
2) I delve into the standard practice of thinking about: "It could always be worse..."

When I first returned from France, I binge watched HBO's "Band of Brothers" because I was so interested after visiting Normandy. During the last couple days, I've watched "The Pacific", which the companion series about the American assault in the "Eastern Theater" during WWII. [Picture me with headphones and my ipad, wrapped a gazillion blankets.] In a strange, twisted way, it reminded me that I had better quit my whining - that what those guys went through...Let's just say that I'm not going to earn any medals of honor for feeling like I want to throw up a lot but not.
(But I'm keeping my imaginary crown!)

I also read a lot of blogs and webpages about other people who are living with cancer. And it's a guarantee that everyday, I read about someone who reminds me "It could be worse..."Like Valiant Vito, who (and his mom) inspire me every day.

What I'm facing is nothing compared to what they faced. There are some similarities, I would argue, though. We're all scared sometimes. And we all have to figure out how to keep our heads down and keep going. And the acceptance of the randomness of it all... Sometimes life is so damn random.

I didn't write this blog entry to have you all say, "Sorry, June, that you are going through a tough time." or "I'm sorry you're not feeling good." I'm not fishing for sympathy. Promise!

I try to make my blog about giving some window into the world of someone living with cancer. And if you are someone living with cancer, I hope you take away some feeling that you're not alone. We are just warriors trying to keep our heads down and keep going. We can do this!

And to make sure I retain my crown of course.

The One in Which I Really LIsten to Todd, the Hawaiian Surfer Dude

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

SPIRIT:

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

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

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

The One in Which I 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 Ninja Grasshopper's Hair Starts to Fall Out - #hairisjusthair

I shared an experience the other day on the way in to the doctor's office. The oncologist is on the 2nd floor of the medical building, and Steven and I opted to take the stairs rather than the elevator. A woman coming down the stairs, wearing a chemo head wrap, remarked as she passed us, "We've got to take the stairs as long as we can, right?" I replied, "That's right!" And I felt an instant connection with her. 

Damn right! Because we are Ninja WARRIORS!

But today I felt like I had reached a new milestone in my Ninja Warrior training. While showering and washing my hair, I noticed a lot of strands between my fingers as I passed my hands through to rinse the shampoo. Now, I have a lot of hair, so that's not that unusual. Steven can attest to how much hair he regularly pulls out of the drain. (On second thought, scratch that.. It's gross and you don't need that visual). But as I continued to rinse my hair, more and more strands were entwined in my fingers. I wasn't freaked out or sad. Really just fascinated. I knew it was coming. My chemo doesn't make all of my hair fall out, but the radiation will cause (is causing) patches of my hair to fall out. I was warned multiple times, so it was no surprise. It was just an acknowledgement that, "Yes, Grasshopper. This is happening."

...but still has much to learn about hair loss due to cancer treatment.

Which eventually lead me to think, 'How much more of this is going to happen?" Will I be wearing a chemo wrap like my Warrior sister in the stairwell? Or is it something I could cover up with one of those cute head wraps my daughters loving picked out for me right after my surgery so I could go out in public without scaring people with my gnarly wound?

They say that, with the chemo I'm taking, that the hair loss is contained to where the radiation is actually zapping your head, but since I keep my eyes closed the entire time, I'm not really sure where that is. I mean, are we talking, like, a bad haircut from Super Cuts? (#freepass - you can't sue me, so neener neener neener!)

 Side Note: OMG! You have to google image that shit: "Bad Haircuts from Super Cuts"!

I may possibly burn in hell for posting this,..

So, is that what I have to look forward to? Is it more like one of those mangy dogs that they shave after rescuing it on Hope for Paws? Those videos are so sweet, but man, those dogs look pathetic in the beginning.

I'm going to stop right now to say; I hope you realize that I not really thinking long and hard about this. Hair is just fucking hair. To be honest, this is the stupid shit that I think about sometimes so I don't get overwhelmed by the Big Picture.

Because the Big Picture can very, very overwhelming.

Lately, I've been thinking about how many Ninja Warriors there are out there - and how I always say that the power in numbers. I just found out today that another one of my friends, one of my teacher mentors, found out she has cancer. Time to WARRIOR UP and get shit done, my sister-friend. We need to go ninja on some serious cancer ass.
 #cancerisourbitch #motherfuckincancerfightingninjawarriors #noonefightsalone!

I'm so sorry that you're going through this shit!
Love,  June Xoxoxo

P.S. But first...search on google images for "Bad haircuts at Supercuts'...

Ninja Warrior Power - Activate!

I've talked a little about my radiation treatment - first with the Who Is the Masked Women post, in which I described what it was like to get fitted for my Mask of Horror AKA Radiation mask. I further announced my actual start of treatment with Hear ye! Hear Ye! The Radiation and Chemotherapy Doth Commence!

But after a week of treatment, I'm starting to settle in and figure out how it all works.

First of all, when they call you to the radiology room, they make you say aloud (to confirm):
1)  your name,
2) birthdate, and
3) "what they are treating"
And it's all right on the screen in front of you. So, I basically have given you the secret pass if you ever want to slip in and have some radiology treatment done. it's kind of like a spa treatment. That's what the nurse said to me before I started. (Helpful tip:  Unlike me, that nurse is a pathological liar.) Hey, but whatever floats your boat. You now have the keys to the castle if you are interested.

I have no problem with the name and birth-date thingy, but I have stumbled with the "what are they treating" question.  Is it the head? Or the brain? Or the mother fucking cancer cells? Or "cranium-threatening bastard thugs" inside my head/brain? The radiology technicians never seem as amused as me at my attempts to be accurate. To their credit, they play along nicely, though.

And they are very tolerant of my music choices. You see, we're allowed to bring our own music to stream into the room. Only it's not very private because headphones would definitely not compatible with the whole zappity-zapping radiology thing going on around my had. So, it's piped in from a playlist on my phone.

I get the distinct impression that my music choices are not the "norm" for them. I guess a lot of people prefer zen-like, peaceful stuff that makes me think of people in expensive yoga clothes and who smell like patchouli oil (not that there's anything wrong with that....) Or very sweet, elderly ladies who probably request classical or Sinatra or something.

I will say that I am very considerate and download the "clean" versions of songs as much as possible.
But what feels right to me is to fight. with every ounce of my being. Dig down deep and channel my inner Ninja Warrior. And my Ninja Warrior is not thinking about waterfalls and lollypops and rainbows or ring-a-ding-ding! My Ninja Warrior is thinking about fucking some shit up.

No, that's not exactly right. My Ninja Warrior is not thinking about hate, but POWER. I want to feel the power - MY POWER -coursing through my veins from the tip of the toes to my curly topped head. My Ninja Warrior is saying "Raaawwwwrrr, Mother Fucker!!!" not "meow."

Today, for some reason, I was thinking about how I've been a Ninja Warrior all along. There were signs early on.So, today I used music to call on my Ninja Warrior spirit from days gone by...

Today, I was channeling that girl that got <eh hem> "detained" by the police for painting "U.S Out of El Salvador" on the High School wall...in weather-beater paint, no less.

(If you don't know what I'm talking about, kiddies, need I say it? Google that shit.)

Today, I was channeling the girl who cut her own hair in college and double pierced her own ear...

Who woke up sweaty and bruised from a night of diving into a mosh pit at a punk club....

I was channeling the girl who went to a freshman dorm "Kink or Pink" Party (where all the girls dressed in cute pink outfits - DUH) dressed in a black dance unitard and carrying a bent hanger.

[Sorry! No pictures of that one!]

But Bonus Side Note: I believe that was the first time Steven walked me back to my dorm room and attempted to kiss me. But I closed the door in his face. Imagine how the story would have been different if I hadn't? It's definitely some Butterfly Effect kind of shit, no?

Today, I was channeling the raw, undeniable power of Young June/The Outlier, who has always been a Mother Fucking Ninja Warrior!  And today this Ninja Warrior needed powerful music.

I came up with a whole playlist, but for some reason, this song captured the spirit of the day. It's not what they are saying, but the essence.  Today, I didn't want peace. I wanted to feel power. Drop to your knees kind of POWER.

The Kick-Ass Ninja Adventures of June/The Outlier

So, if you did the math yesterday, I guess you figured out that even with the juice making and the cleaning of the juicer, and the pill taking, and the doctors' appointment, I find myself with some time on my hands.

In my Ninja Warrior Power Corner, I have ever expanding collection of lovely things that people have sent me to cheer me up and give me courage and hope. And what is June's natural reaction to this? To make a play out of it! DUH! (picture Mickey Rooney saying, "Hey, let's put on a show!")

I've been fleshing out an idea that I think could be really sensational. This is just what is called in the biz a "treatment". (I'm lying. I have no idea if that's what it's called. It just sounded good. I warned you that I was pathologically honest.)

The Kick-Ass Ninja Adventures of June/The Outlier
June was an unassuming girl - no one knew about her super powers (except for the one about being able to drink large quantities of wine). She mostly went about her day, looking for the beauty in the world and in people.

Only she rarely  wore dresses. This picture is not a usual representation of her. In fact, on her First grade report card, her teacher said something like, "Lovely girl. If only she wore more dresses." (True story. Or at least as far as I can remember it. Either way, I think that teacher would have her ass sued in today's litigious climate.)

Until one day...she came upon a potentially tragic situation in which she was compelled to reveal her secret identity...

You see, she kept all her most treasured items in this blingy box, deep in the dark, where she thought it was well-protected with a hard shell. (She called it a "cranium" for some reason. Crazy kid.)

 

The box may seem to contain ordinary things for the average person, but everything there was precious to her. She opened the box daily and would appreciate all the unique things that she had in there. She couldn't imagine life without it.

So, she was forced to reveal her alter ego and her superpowers:

 Yes, you see, June was actually a Ninja Warrior who went by the name of The Outlier. All she had to do was ring the bell and BAM! ZAP! POW! She would turn into The Outlier in a snap!

Sometimes she doubted her ability, because she really had never had occasion to use it before...

but then she could look into her magic mirror, and it would always tell her the truth:

June knew it was time to ring that bell and summon The Outlier and go ninja on anyone ass who was threatening her blingy box.  Fortunately, The Outlier had some weapons at her disposal...

First of all, she had these awesome Ninja stars!!!! Take that, you cranium-threatening bastard thugs! (And in a convenient, camo case!)

And she had a team! 

(all good Super Heros do!)

Steven the clownfish (who is actually not as funny as he thinks he is), has a kick-ass superpower. you see, he won't give up...ever, ever, ever...and he keeps telling June/The Outlier how wonderful and strong she is ...even when she isn't feeling very strong, even when she's scared. and that is the most powerful super power sometimes.

Another part of The Outlier's team is "Rad".  He doesn't have superpowers all on his own, but with the help of his magic...errr (don't say, "nuts'...don't say, "nuts"...)

"RAD" MACHINE... he is able to get rid of the cranium-threatening, bastard thugs. 

It's really a very interesting process and could be a high point of the movie when the squirrel presses that little white button (with the musical symbols on it) and is starts playing "Let It Go" and all the cranium-threatening, bastard thugs run screaming out of the box and implode.

Only we may need to to go for a R rating because of the gore and the swearing that would inevitably ensue. How many "fucks" are allowed in a movie before it becomes R-rated?

Let's think on that one.

Another part of the Invincible Team is "Onci" (the "c" is hard, like "Oncky")
Yes, he may look like an unassuming hedgehog, but he has the power to work with RAD and give June/The Outlier magic pills that help protect the precious things inside her blingy cranium box. But his greatest superpower is that he GETS how fragile and valuable those things are, and he is so darn cute, you really want to just hug him. Only you can't. Because that would be inappropriate.

Finally,  June/The Outlier had another part of her team who tripped on some glitter and turned up LAME, so she had to replace him with...

Dr. Awesome McAwesomesauce!!!  

Who is a flying squirrel. 

Obvi!

and what's cooler than a flying squirrel? Nothing. And flying squirrels can never end up lame because they FLY! Hello!?!?!

Oh, I forgot one detail that should be inserted earlier in the movie...
"It's called "foreshadowing", kiddies.)

The things is....not only were those cranium-threatening,  bastard thugs threatening the precious things in June/The Outlier's blingy box...they were using some kind of electrical device to try to get at it....and that was sending nasty zappity, zap signals throughout June/The Outlier's body that caused her to twitch and want to punch anyone in the face. Which isn't an official "Ninja Warrior" move and could get her disqualified from ever participating in any future Ninja events.

So, Dr. Awesome McAwesomesauce worked his magic and concocted a special brew that stopped (most) of the twitching and most importantly stopped June/The Outlier from wanting to punch people in the face.

The last act is kind of murky still, but I know the ending:

THE END

Then & Now ... And a personal message to my children

Several people have asked me how I'm adjusting to the new life/schedule I'm living. A completely valid question because it really is so different from what I was experiencing just 2 months ago. So, I thought I would elaborate on what it was like "Then & Now"

Then:
Early Morning - On a typical day I would wake up early - about 5:00 a.m. - and screw around on the computer for a little while. This is a habit that I developed a long, long time ago, when my children were very little. This early morning "me" time was a chance to catch up on the world and not have all waking hours be about diapers and meals and backpacks and such. As my kids have grown, the habit has persisted. I have used the time to catch up on family and friends on Facebook, answer emails, and pin frivolous pictures on Pinterest of "ridiculously cute animals" and "vacation spots I want to visit". And there was fair amount (read: too much) coffee consumed during this time.

The Typical Day - Around 6:00 a.m., I would begin transitioning to work mode - thinking about the day ahead. In my job this year, as an Intervention Specialist, I was responsible for all General Education Students (K-5) who might be struggling academically. Without boring you too much...I'll try to explain: This involves keeping track of lots of data/reports from various Adaptive Technology programs and assessments.  I used this data to make decision about WHO would be in my intervention groups and WHAT I would working on with them. The first four weeks of school, I was also giving the teachers a lot of support about how to use the adaptive technology and determining who would best benefit from the interventions, so I had only really been meeting with my groups about 2 weeks when the proverbial shit hit the fan. My schedule was 8:00 a.m. - 3:15 p.m., with about 1 hour blocks with each of my intervention groups, and a block set aside in mid-day for more reports/lesson planning.

I worked some weekends, too, at the winery. I had started to work in the Steven Kent tasting room in April 2014, and I loved, loved, loved going in there and spending time with my SKW Family.  Although they'd known me as "Steven's wife" for quite a long time, we were really bonding as a team.

And they were learning how quirky I really am: how I like to sing and dance on my shifts, and make stupid jokes, and that I would always "take one for the team" if someone needed a second opinion after opening a new bottle, and they weren't sure if it was okay to pour for our guests.  Because I'm selfless like that. <snortle!> Oh, and yea! I loved interacting with the guests, talking to them about the wine and the history of the winery, etc.

September 23rd, The Shit Hit the Fan

Now:
There were so many things that were so predictable in my life, but what happened on September 23rd (and after) was NOT predictable at all. A lot has/is changing week-to-week...even day-to-day. I won't even count the week of my surgery and when I first got home from the hospital because that was like being hit by a bus. And would you really ask anybody, "How was your day?" after they had been hit by a bus? That's not your usual day.

But now, we've (sort of) settled into a new routine. I still get up early in the morning because my meds make me sleepy by 9:00 p.m., and plus, I've had that long nap in the afternoon (see below). I still like to check in with my family and friends on Facebook, and screw around on Pinterest. I especially like finding ridiculously cute animals because they make me smile. I've even branched out to Reddit because that's where nearly every image that you see on Pinterest originates. Check out it! I'm not lying. Look for the subreddit "aww.
And if you don't know what a "subreddit" is, ask your kid - or grandkid.
And of course, I've started writing this blog, which takes a good couple hours of my morning.
I've replaced the coffee with herbal tea.
That's really the only changes to my morning: Blog, Tea, and Reddit.

But by 8:00 a.m. I start taking my meds. It keeps changing as they are STILL trying to figure out how to better control my seizures. Right now, I take:
7 pills at 8 a.m.,
1 pill at 9 a.m.,
1 pill, at 12:00 p.m.,
1 pill at 2:30 p.m,
1 pill at 4:30 p.m
4 pills at 8:00 p.m.
1 pill at 9:00 p.m
Thank goodness there is an app for that!What did they do in the olden days? Oh, right! They didn't have modern medicine! Suckas!

The app we're using is called Medisafe. I'm sure there are others, but isn't this a cute picture? Look at the puppy!

Unfortunately, the med. that I take at 2:30 p.m. makes me very, very sleepy, so that is usually followed by a very, very long nap. (We're working on trying alternatives because as much as I like naps, 1-1/2 to 2 hours a day could better spent.) And all the anti-seizure meds make me a little slow, especially with my speech. But the trade-off is that I don't have general (grand mal) seizures, so that's  "the lesser of the two evils" territory.

Besides the nap, I have a standing date with Radiologist for the next 6 weeks, Monday - Friday, 11:00 a.m., where I get to lie on a space age table and have my brain zapped while I wear the Mask of Horror. By the way, I get to listen to my own playlists, so if you want to suggest some songs to get me through a session, that'd be sweet!

And once a week, I'll be at the oncologist for blood work and such. The neurosurgeon needs to follow up with an MRI soon. (Let me tell ya'..Atavan is my new best friend on MRI days!) Plus, we're connected now with the UCSF Neuro-oncology department, which has its own set of appointments...
Let's just wrap this puppy up and say that there are A LOT of doctors appointments.

Every morning, I take about 15 minutes making a green juice for Steven and me, and then about 20 minutes cleaning all the nooks and crannies of the juice maker. Apparently, fiber is messy. But green juice is REALLY good for you. Google that shit. © [Geek alert! I just found out how to make the copyright symbol on a mac by ....googling that shit!] Unfortunately, I don't actually have the copyright for the phrase because I know I could make millions! Millions, I tell ya'!

And I've become a bit of a germ-a-phobe. Steven called me "Howard Hughes" the other day. And I've NEVER been "that kind of person", but I am always thinking about who touched the escalator rail before me and how disgusting the shopping carts could be (are). I use my elbows as much as possible to open/close doors, etc. No, it's not about ebola. It's about everything! I'm currently taking chemo, which leaves me very vulnerable to infection. So, don't be offended if I wash my hands after we shake hands.  Or if I offer to rub elbows instead.

One of the unexpected, but lovely changes in our routines is that Steven and I go for a walk pretty much every day. As I've gotten stronger, we've been tackling "the hill" (Communications Hill). We walk, hand-in-hand, and talk about small stuff and big stuff...and sometimes don't talk at all.

Shorty and the Bald Hotty on Communications Hill

Every once-in-a-while, one of us will look at each other and say, "I love you." and the other says, "I love you, too"...and (this is practically mandatory), the first one says, "No, I really love you."
 Just to clarify. This is not a new routine. This has been a part of our routine for a long time. Schmoopy couples do that. It's in the manual. Look it up. Only it's probably not online yet.
[Note to self: Make a Schmoopy Couple Manual]

Probably the biggest bummer I've encountered in my new day-to-day existence is this:
I've gone from being the one who worries about everybody else to being the one about whom everyone worries. Especially my children. When my kids got old enough that they could be away from me, we've had this long-standing understanding that I just needed to know where they were. I'm a very visual person, so I thought of it in this way. You know how google maps has these little red pins to tell you where places are? Well, I picture each of my children as having a red flag, and as long as I know where each red flag is, I feel (semi) comfortable. If not: I'm calling and texting until I FIND the red flag.

But now we've entered a new domain.. with a new map. And suddenly, my kids are worried about me. And I'm causing them stress and anxiety and even sadness...Inevitable, I guess. But it seems like, to me, that I'm far too young to be entering into that domain. And it bums me out.

You've probably noticed that I don't write much about my children on blog. This is why.

But this part is for them. Personally.

My dear, dear children:
I love you more than I can possibly say. I don't have words. And I don't want to cause you pain or sadness or stress. Some of that is out of my hands. But I'll tell you what. I know you feel helpless right now, but there is something you can do:

 If you want to make me happy, what makes me the most happy is to see YOU happy.*

Annual Christmas Eve Mirassou Sibling Pajama & Movie Night

And I'm going to fight like a Mother Fuckin' Ninja Warrior to see as much of this as possible. That's what I'm fighting FOR.

*I'm posting this here, publicly, so the people who are supporting YOU - including each other -  can remind of you of this when you feel sad and confused and don't know what to do.

Hear Ye! Hear Ye!! The Radiation and Chemotherapy Doth Commence!

Today is a Banner Day as far as my cancer treatment goes. I'm not sure if that's exactly how  I want to characterize that though. I picture king's men riding on regal horses,  carrying banners that say: "June's First Day of Radiation and Chemotherapy" - which would be really long banners, and a horse might trip and hurt himself.

And for some reason, that makes me think about that Monty Python scene from The Holy Grail. (Hey, I wasn't a MP nerd...my  brother, John,  was. I'm just guilty by association...)

After viewing it again, it's still makes me laugh out loud, but I think you should only click on this link if you have already seen the whole movie. Given this context, this may be a new level of "dark humor" for me...

 

"But I'm not dead yet!"

"You soon will be!"

"I"m happy! I'm happy!"

(Forgive me. I blame it all on my parents, John & Judith Fremer.)

Damn! I'm throwing everybody under the bus today. Look out!

Today, I start my radiation and chemotherapy. I had my "Sim Session" (That's what all the cool kids are calling it. Errr, rather, the nurses and radiation technicians in the office.) Just like I suspected, I didn't get a joy stick  to play with or ANYTHING!  For goodness sake, Mario Brothers on the old gameboy was more fun than this. No, that's not dramatic enough...
The original Atari pong game was even more fun! Seriously. And if you're not old enough to remember that, google that shit. (I'm getting t-shirts made up with that phrase. I swear. And I'm sure that google's legal team won't have a problem with it. In fact, I'm sure they'll thank me and want to order dozens and dozens.)

Okay, I know it looks cool, but trust me on this one....not at all fun.

Have I taught you nothing, Young Grasshopper?

Sure, it probably is pretty cool for the doctor and the technician, but not so much the patient.

 Oh, what's that you say? It isn't intended to be fun but rather to save my life? Ohhhhhh! Well, that's a horse of another color! In that case...Bring it On!!!

I have all my Super Power accoutrements: bracelets and necklaces and Strength & Courage stones, and crystals, and even a flying squirrel. Bring. It. On.

Yesterday, during my "Sim Session", I thought about April & Coffey's wedding and Steven's & My wedding to distract me from The Mask. Aren't weddings the bomb-diggity? Everyone is happy, and people get together that never get together...why do we do that???? I think we should get married a lot more frequently.

April 28, 1990

August 10, 2013

 Or how 'bout this: not wait until someone's wedding to get together??? Doesn't that sound like a plan? (And a lot less expensive, too, I might add...)

"I feel happy! I feel happy!"

P.S. It's the small things in life: it made giggle to create labels for this post, including cancer, braincancer, treatment, radiation, chemotherapy, and Monty Python....

P.P.S. They want us to dress up like a super hero for radiation treatment on Friday. Guess what I'm going as!  DUH!!!