The One in Which I Thank the Carson Family & Say Good-bye to One of Our Own

In 1994, we moved into this house, and our oldest daughter, April, started attending the neighborhood school, Rachel Carson Elementary. At the time, there were roughly 600+ students going there  - (Today, there are about 400 students!) -  so if you're really curious about why there were so many, Google that Shit: "SJUSD" and "court ordered bussing" It's an interesting story, but for another time...

Every year, the kids endured a First Day of School picture on our porch. This one was from Katherine's first day of kindergarten since Sara isn't in uniform yet.

The students wore/wear uniforms, so it looked like a sea of green and blue when I went to pick  her up in the afternoon with my three littler ones. As we walked by the front of the school on our way home, the principal said, "How was your first day, April?"

I remember thinking at that time what a special thing it was - to remember a child's name - (one child in 600!) - on the first day. How meaningful that was to her - and me! But that's the kind of school Rachel Carson is - a real FAMILY of staff and parents and children. I have been there ever since: all four of my children attended Carson, and I began working there - first as a parent volunteer, then a part-time computer lab instructor, and eventually as a full-time teacher.  And it's been a privilege.

I have never felt more honored to be a part of the Carson School Community than I felt last Friday night, February 13th, when they came together for a Valentine's Day Dance  - that benefited me and my family! It was a lovely event, and I was honored and overwhelmed. There was dancing, and a photo station, food and raffles baskets. And the kids were so pumped to have an opportunity to get "spiffied up". They were adorable!

Thank you to all the parents, teachers, staff, and students 

who made this so special!

I'm not going to lie - I was anxious about this event because it was a mixture of present day students  (read: young) and "old" students (now in high school). I thought a lot about what I was going to wear because I didn't want to freak out the little ones. "Who is that sick, bald lady, and where is Mrs. Mirassou?"

I wanted them to feel comfortable coming up to me and walking way with a happy picture in their minds of Mrs. Mirassou. After some consultation and shopping with my daughter, I ended up with my purple wig with a white flower clipped to the side, a bright pink sweater and black & white scarf with hearts all over it in honor of the holiday. I know it sounds pretty "clown-like", but I'd rather the little ones view me as approachable and funny looking than sickly and scary. I guess it's the elementary school teacher in me.

As far as I know there are no pictures of this - I didn't take any. Kiddies, I've realized that when you've been the "unofficial photographer" for a really long time, no one steps up unless you specifically ask them! DOH!

The older/high school students were well-aware of the "real deal". In fact, I'd already received a precious gift that one of my former students (Thank you, Emily Cole! <3) had coordinated: a notebook that she'd passed around the high school a couple months before filled with messages of hope and love and gratitude.

Being a teacher is somewhat like being a parent. it's not like making "widgets". If you're lucky, you get to see/hear the results of what you've accomplished many years later. As a teacher, sometimes you never know the effect that one small thing may have had on a child - good or bad, really - and that can make it very daunting.

These heart-felt messages in this notebook really made my heart smile as I read through them.  

But helpful tip: all children will tell you that you were "their favorite teacher"- So sweet! (Sorry to ruin it for you new teachers out there! haha!)

One of my favorite things about teaching is having the opportunity to have siblings come up in the grades so I have multiple children from the same family. As a mom of four, I know how different they can be and yet how there are shared experiences that leave an indelible mark on them - like having the same fifth grade teacher! 

At Friday's event, one little girl shyly scooted up to me (with some prodding from her mom) during the night to hand me a little note. I had had her brother several years earlier, but hadn't had the pleasure of her in my classroom. She held in her hand a folded up "Super Star" ticket, obviously a scrap of paper she'd found to write an impromptu message that she wanted to share with me.

Look past the spelling/grammar...this is an example of the pure light and innocence of a child, straight from the heart.

 So, Friday night, I got to visit with students - young & old, parents and staff members and watch the magic that is Carson School. I wish I could have stayed the whole night long, bopping on the dance floor until lights out, and greeting every single person who attended.

Unfortunately, that was the end of my first new cycle of chemotherapy with the higher dosage, and I was/am still trying to work it out. (It's almost a week later, and I will don't feel 100% yet....)

Please know that in my HEART, I was there the whole time, ....and I am so, so grateful for everything you did!

____________________________________________________________

Finally, I want to say good-bye to one our very special Carson Family members.  Jeanne Mullins was a first and second grade teacher at Carson for many years. Not only did two of my children have her as a teacher, but she was my Master Teacher when I was student teaching to get my CA Teaching Credential.

I learned so much in her classroom -  not just about the ins-and-outs of "teaching" -  but about creating an environment in where children feel important and loved. That extended outside the classroom into every area of Jeanne's life. You will be missed, my friend.

The One in Which I Reveal My Valentine's Gift

I've been following on Facebook, Twitter, and Instagram as people (read: women) show/tell what their Valentine's Day Gifts were. I thought I'd share mine:

Okay, it's probably not a big secret at this point...

My Valentine's Day Gift(s) 2015

A Man Who...

• Stroked my hair back from my face and placed tissues under my chin as I rode out a strong focal seizure, whispering in my ear, "That's right. Relax. You're doing great..."
• Strode along the hospital hallways, then the neighborhood sidewalk, and The Hill - always at my pace, as we talked or not talked - but always held hands.
• Literally, talked me into breathing again when I had a full-on panic attack after taking a new medication.  (If any of you have had a panic attack in your life, you know scary that can be.)
• Was my voice when I could not be my own voice in doctors' meetings and social gatherings...
• And had the patience to listen when I started to find my own voice, and know when to talk and when NOT to talk (most of the time)
• Somehow manages to keep this boat afloat despite the rocky seas - bill gets paid, appointments are made, medications are refilled...
• Has stood by my side the last four months during the most challenging time in our lives -
• Doesn't focus on my freaky, semi-bald, Alien Crop Circle head, but instead looks into my eyes and says multiple times a day, "You know I love you....I mean, I really love you."

And I believe him. Because only a really, really special Valentine could gifts like that. And yes, I'm fully aware of how lucky I am.

My Schmoopy!

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 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!