The One in Which I Describe the Family Holiday with "New Normal June"

Warning: I'm gonna write a lot and then reward you with some of the most adorable pictures you've ever seen. Trust me. It'll be worth it. Carry on! 
I've taken a full-week off from writing this blog - a deliberate decision to be "in the present" as much as possible and soak up the experience of being able to be with my whole family together at one of the my favorite place on earth...

Yes, well, obviously "The Beach".... (You don't get any points for knowing that. Sorry, Hermoine!)

But more specifically, Capitola, CA. This is the way you usually see it in brochures and stuff, but it's so much more than this.

The distinctive colorful view of Capitola Village

It's one of those places that you don't really even want to tell people about because then it will be even more crowded when you go.

Capitola is a mere 35 - 40 minute drive from our house in San Jose. I think it's a natural phenomenon that folks don't manage to go to their favorite local places nearly enough. But after my diagnosis and treatment in the last 3 months, my family rallied together and said, "What should we do for Christmas because we want to to do it together."

The planning involved not just my husband and my 4 children plus Son-in-Love, but my sister, Kathleen, (and her daughter's family), brother, John, (with his sig. other, Condee), and my father and mother.
Shout out: Mom & Dad were instrumental financially in making this grand gathering become a reality, and we are so very grateful! Airline tickets had to purchased and two full units had to be rented - one had to accommodate dogs! - and at peak, we were expecting 14 adults and 2 small children. And a partridge in a pear treeeeeeeee.....

The "Normal June" (which I shall begin to call the "Old Normal June") would have relished this task - full of moving parts, plans, and lists... Who will stay where? What extra supplies/beds will we need? Menus, grocery lists...it's a Type A's version of heaven, I guess.

But based on the physical impact of the last few weeks of my initial radiation/chemo treatment, it became clear that someone OTHER than me was going to have to handle the rental properties. I was not up to the challenge, and I had the good sense to say, "Please take charge of this!" - and so, Steven & John made that part happen in a flurry of internet and phone negotiations with the long-distance help of Mom & Dad, of course. Done.

As I recovered from my fatigue, I swung into Old Normal June-mode and started sending out emails with logistics, loose schedules, and menus. Google Docs were made and Evernote notes were tagged...and I thought I "was back" - I had this handled - with the help of Daughter April, who did a great job of updating things as plans solidified.

But the reality is, once we got there - things kept changing...with so many variables and people, my plans often were way off target. The good news - and it was really, really good news! - was that both Katherine and Sara were able to stay the whole time - which was not the plan in the beginning. The bad news is that every change meant I needed to adjust The Plan. And I got completely stressed out.

At the heart of it? Lack of control? Fear of disappointing the family because I couldn't handle it? Projecting in the future...fear that my New Normal June might not be up to the task anymore? Who is this New Normal June, and who invited her? Will she be sticking around, or is this a temporary thing???

Those of you that have been following my blog are probably staring at the screen right now slack-jawed - or yelling at me through it: "Have you learned nothing this past three months?" "What about all this poppycock about letting stuff go and knowing what really matters?

 I know. I know. I'm still a Ninja Warrior-in-Training, I guess. Or it's one of the things you never really master? I have no idea. All I know was...

About the fifth day, I had a little meltdown. Eyes turned toward me, asking what the plan was...when were we leaving for the next event. And I just broke down. And released the responsibility. I took control by saying, "I don't want to be in control. I CAN'T be in control." And it was really hard, and I cried, and then...you know what? The world didn't stop spinning. The family rallied, and everyone picked up the ball and ran with it.

Kiddies, I'm happy to say that this Ninja-in-Training was able to right her thinking and focus again on what really matters... And I don't need to tell you that when you do that...

The Magic Happens.

Like this:

FAMILY...2nd, 3rd and 4th Generation 

And family...2nd Generation Fremer Siblings

and family...1st and 2nd Generation Fremer Family

and Family...2nd and 3rd Generations - The Mirassou/Coffey Family (plus "the Bean")

The planned and posed moments were spectacular, 

but so were the unanticipated and unexpected gatherings. 

Maybe more so?

Daily walks along the water with Steven and the doggies - FYI: Capi (left) is named after Capitola

Tiger hat and beanie to keep our baldy heads warm in the morning chill

Goofy Brothers-in-law bonding

And...

Mom & Son swaying to '80's Pop music

Extra time with Sara thanks to coworkers covering holiday shifts...

Smiles and laughter and extra days with Katherine with April practicing her mommy skills!

Morning gatherings on the patio after our walks

Alone time with Seestor - who travelled for 2 days for basically a two day visit! 

Condee and one of the happiest boys you'll ever meet.

Matt & Dad - Multi-generational meetings and conversations

Siblings

and of course, Schmoopy Love!

Getting together the Family is work and complicated  - and yes, unpredictable, 

but there is no doubt that... it is worth it. 

Because it is MAGICAL. 

And just a thought from your in-house MFBCFNW-in-training: 

maybe the fact that it's not easy is part of what makes it magical?

The One in Which I Explain the Importance of my Ninja Stars

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

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

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

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

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

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

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

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

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

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

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

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

Step Three: Go for it!

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

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

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

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

I wish that for all of you  - 

not just during this holiday season, but every day.

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

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

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

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

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

But I'm not talking about Steve Jobs. 

I'm talking about Steven Mirassou. 

My Schmoopy. 

My Rock. 

and now my Caregiver.

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

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

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

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

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

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

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

It's exhausting even to think about it.

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

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

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

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

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

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

Let's see....

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

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

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

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

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

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

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

The One in Which I Explain Why I Feel So Lucky Today - and Reveal a Ninja Warrior Secret

Two days left of my initial treatment! It's raining heavily out there, but I don't know what it would take for me to miss my radiation appointment today! Oh, no, no, no, no! You don't know who you're messing with! This is a Ninja Warrior on a mission! Bring it on, Sharknado!!!

June is on Day 29 of a 30 day radiation treatment schedule! Nice try!

You might have noticed that I changed up my blog banner. It probably looks too busy (Hey, who asked ya'??), but for now I think it more accurately reflects where I am on my journey. I'm not just a mother fuckin' brain cancer fighting ninja warrior. I am seeing more and more time and energy for the other "parts" of me. And it feels so good.

In the end of September, when Steven and I received my prognosis, I was in a very different place (mentally & physically) than I am now.  Post-surgery, I was having focal seizures 8-12 times a day! I spent most of my time lying down in bed or on the sofa, and Steven was right by my side the whole time, stroking my hair and talking me through the seizures. And yes, I felt so lucky to have him there with me. (I don't know what I would have done without him!) But I'm not gonna lie...I cried a lot. Not because I was feeling sorry for myself, but the thoughts that kept running through my head were: "Is this the best it is going to get?" "Is this how it is going to end?"

The idea was so crushing and debilitating...I cry just remembering it now. And I'm sorry if I've made some of you cry, too.

Just in case you need some...haha!

By the way, kiddies, I have become the biggest cry baby in the world, I think. Sad tears, happy tears...it's all good! Don't let anyone tell you differently.

So, why do I feel so lucky today, despite the fact that I still have GBM and a lot of the unpleasant things that it entails? 

Well, first of all, I discovered that I was Mother Fuckin' Brain Cancer Fighting Ninja Warrior (#mfbcfnw). So, that's cool, yes? Okay, kiddies, I'm going to share one of the most powerful lessons that I've learned as a Ninja Warrior. Ready?

The less you worry/think about things you can't control, the less "crushed and debilitated" you will feel. Focus on the things you can control. I might look badass, all bald and stuff, but the secret is: my primary weapon as a Ninja Warrior is my MIND. I can control my thoughts.

You mean, you've heard this before? You're right. It's not new. But it takes a long time to master, and it takes a lot of practice and discipline. And you will probably backslide occasionally, which is when those tissues come in handy.  But it's worth the effort to think about what you can and can't control, and focus on the CAN part as much as possible. Trust me.

So, Steven and I  - okay, mostly Steven (#myrock), I have to say, in the early days because I wasn't strong enough in the beginning - started with what we could control - plugging away, seeking out appropriate medical care for me and getting treatments started. Of course, we found Dr. Awesome McAwesomesauce, who changed my prescriptions and I haven't had another seizure since. Eek! I hesitate to even type that - I don't want to jinx myself! Sshhhh! Pretend I never said that. And now my initial treatment plan is nearly complete! That's crazy! It will be 42 days of chemo and 30 days of radiation! Woot!

Don't get me wrong... It is different. No doubt. (If you want more details about the medically side of things, click on the tab above or the link here: "Living with GBM and My Medical "Now What?")

But today, I feel more like I am Living Life in Full. I'm more than just a cancer patient. I feel stronger every day and more like "myself" - but with a more obvious potty mouth, which I've decided isn't such a bad thing.  I'm helping to plan our holiday family gathering at the end of the month and getting ridiculously excited about the arrival of our first grandbaby!  I've even begun to create Pinterest boards and send out absurdly long emails with details about these things. Now, anyone who knows me is saying, "Dang! JUNE is BACK!" <high fives to all of my fellow Type-A homies out there!>

Steven and I went for our daily therapy walk yesterday, and we had a good cry conversation about how we both are forever changed by this. There will always be the dividing line of B.C. and A.C. Where do we go from here? There are so many things that we don't know, too.  We don't have control over everything....

Wait, doesn't this sound suspiciously like something I said a few paragraphs above? I told you it takes practice! Keep trying, my fellow Ninja Warriors! Maybe we'll never truly master it. But if we keep trying, I believe we'll be happier for it.

Cancer doesn't define us, but it does change us. Not just those who get it, but all those who love the person. And it's the "Now What?" part that is confusing, scary, daunting.., But the exciting thing is...there's a "Now What?" for us, right now.

My New Living Life in Full will obviously look different - but isn't that changing all the time for all of all of us? I feel so lucky today because I am focused on the LIFE part.

The One in Which I Start my Last Week of Treatment and Talk about HOPE

Last Friday seemed like it's been a tipping point for me in my treatments. I mentioned that I started my "boosts" on Thursday, and I was wiped out in the afternoon, with a headache and slowed down speech. The doctor increased my dosage of steroids on Friday and cautioned me against pushing myself too hard. When he heard about our daily 3 mile walk up Communications Hill, the radiologist's eyebrows went a little wonky. They want me to exercise as I feel up to it, but not go too crazy. Moderation? Oh, yea! That's totally me! (not.) But I'm trying to balance my longer term goals with my recovery. Pssst! Hint: Recovery comes first! And I'm pretty sure my radiologist knows more about this stuff then I do....

Sure enough, I woke up feeling drained and spent most of Saturday in bed, nestled under blankets and reading online/watching Netflix. (Query: Is it possible to get to the END of Netflix?)

They say a little exercise can actually combat the fatigue, so I went on a little, leisurely 2 mile flat loop walk around the neighborhood with Steven in the late afternoon - No Hill!

And I was feeling better by Sunday morning.
<insert superhero sound effect here>
I made juice for all of us, walked Communications Hill with Steven, and even made lemon bars for "the guys" in the afternoon...Then I spent the better part of the late afternoon/evening in bed before having a fitful sleep (probably a side effect of the increased steroids). I may need to back off the Communications Hill workout - at least until the end of this week. What was that word again? Moderation. moderation....I'll keep trying...

Side note: someone responded on Facebook about this article about Communications Hill saying that they didn't think that it was actually the name of the hill - but rather something that I had just made up. Haha! I guess it would make sense because that's where Steven & I do a lot of talking...but if you read the article, I guess people do a lot of...<eh hem> "communicating" - and other things -  up there, too, that the residents don't like very much. Doh!

See, I was going to insert the obvious Clint Eastwood, "Get off my lawn" picture, but it was too cute to pass up!

As I've mentioned already, as my initial 6-week treatment is ending, it's time to switch into the "Now What?" mode. For 6 weeks, I had it planned all out for me, and the path was really clear. So, in reaching back out into the interwebs and reading about Long Term Survivors. I stumbled on a document from The National Coalition for Cancer Survivorship called, "Self-Advocacy: A Cancer Survivor's Handbook" (a very good read if you or someone you know is living with cancer). But this lead me to another document that I've been mulling over in my mind:

"YOU HAVE THE RIGHT TO REMAIN HOPEFUL" <--- click for document!

It was published in 2008, so maybe there's a newer version, but this one is free to read online, and I felt like it said so many things that I've been thinking and feeling, I wanted to share it with you. It's related to cancer survivorship, but I think it could be relevant to anyone in a very challenging situation.

As you can probably see from the more serious nature of my blog this past week, I'm definitely going through a transition period. Steven and I discussed yesterday how hard it is to remain optimistic in a world that can be so cynical and pessimistic. So, it really hit me when I got to this part of the article that makes a clear distinction between: wishing, optimism, and HOPE.  I'll leave you to read the details if you're curious.  
Aside: Don't you hate when you go to a presentation or professional development and someone just reads the words from the PPT slides??? Uh...thanks, but I can read for myself. Do you have anything new to add to the discussion???
P.S. There are a lot of good quotes about HOPE in there, though, if that's any incentive.

Despite my drugged up state in the hospital before and after my surgery, one of the few things that I remember was meeting my neurosurgeon, oncologist, and radiologist and all of them using the word "hope"and "hopeful" repeatedly. Whatever they were saying to me was probably very deep and meaningful - and I'm sure Steven understood it - but what I was mostly thinking is:

"Whoa! This is trippy!"

So,  I hadn't thought that much about HOPE as a concept until now.


Okay, I said I wasn't going to read from the article and I was going to let you read it yourself...and I swear, I'm not usually a liar, but this is so good....so much better than I could have said it:

Hope is “mental willpower plus waypower for goals.” Willpower, in this definition is “the driving force to hopeful thinking.” It is a sense of mental energy that helps move a person toward a goal. Waypower, the second component in the hope equation, is the mental capacity used to find a way to reach your goals. It reflects the mental plans or road maps that guide hopeful thought.

That sounds like another Good Will Hunting type of equation, doesn't it? I'm no genius, but the main part I get out of it is: HOPE is more than just wishing that something good will happen or expecting that it will happen (being optimistic), but HOPE is directly tied in with positive beliefs, goal setting, and a sense of self-empowerment...(plus a huge dose of adaptation on the side) <-- I added that last part. So, sue me. #freepass

What struck me the most in my first read of this article is the idea that "Hope is individualistic," -  that the way your hope develops is dependent on your family culture..."and it important to realize family differences with regard to hope."  huh. So, of course, I start thinking about the family that I grew up and what hope meant to us.... and the family we have now and what hope means to us... Newsflash: I could write an entire book on that, and this post is already ridiculous long! Sorry! So just FYI - I'm just opening up a dialogue about this...

I was deeply influenced by my own family's sense of HOPE. And I think that Steven and I have passed that along to our own children. We were instilled with the belief that if you set goals and work hard, you can usual attain them. (As long as the goal were realistic. It doesn't even have to be likely. It could be highly unlikely. For example: Anyone of us could have president of the U.S. But we didn't encourage the idea of hoping you could be a unicorn - at least after a certain age of childlike wonder.)

Bottom line: We were deeply steeped in a sense of self-empowerment. And I believe we've passed these beliefs on to our own children.

Big ah-ha moment for me: I've had plenty of willpower (I'm a Mother Fuckin Brain Cancer Fighting Ninja Warrior, after all) - throughout my life and during this shitty two months -  but this transition period is about tapping into the "waypower". The good news is that I've used "waypower", too, to reach my goals -  to create training schedules to run marathons and half-marathons, go back to school and get my teaching credential in 2003 (with four kids), etc.

But I've never applied it to this situation. I think this time, I'm not going to be able to do it alone. I'm going to need the help of my family, friends, and medical team, It's scary as hell because there's no clear path, and Steven and I are going to have to make decisions without clear right or wrong answers. Hint: if you think that you have the "right answer" you probably shouldn't share with us - at least with that filter -  because we know enough to know that there isn't yet a CURE AKA "right answer". 

But we have to "develop mental plans and road maps" to guide us toward our goal:

to be a 

Long Term Survivor.

This is one of the great quotes from the article that I'll leave you with:

No matter what befalls me, I feel commanded to choose life. You cannot give in to despair. You may hit bottom, but even then you have a choice. And to choose life means an obligation not merely to survive, but to live. ~ Nessa Rapoport

The One in Which I Go Full Baldy and Still Feel Like Merida from Brave

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The One in Which I Just Try to Recognize that Life is Happening...NOW!

This was my day yesterday.  I've included some lessons along the way that I'm learning every day...just for you, kiddies!

MY MORNING
I woke up early this morning, and instead of writing for my blog, I wrote an email to my children. I had mentioned yesterday that I was working on a page about my Personal "Now What?" after my initial treatment is done. I will still post something eventually, but I felt like I should share that with them privately first, rather than on my blog. Especially because my "Now What" is all about them!  The Cliff Notes version: I am determined to live purposefully (PLAN) to make sure we spend as much time together as possible. And in those precious moments, just focus on that, and not worry about what may or may not get in the way of our plans down the road.  

Kiddies, here's been a huge lesson for me: We can (and should) PLAN for life, but we can't CONTROL it.

After a long stint on the laptop, I did my juicing routine. I juiced some crisp cucumber with some carrots, several leaves of spinach, a little ginger for a zing, and one small apple. It was surprisingly delicious, as the vegetable juicing combinations can be. Really!

Side note: Okay, kiddies! I was going to describe things as organic, but it got really repetitive. So, assume that everything I am eating is organic whenever possible from now on. That was one of the biggest take-aways from our first meeting with the UCSF neuro-oncologist in October. 

Another lesson I've learned: When it comes to cancer - and just your health in general -  eating organic is really important.
Once I was done, my brother made  juice with organic radishes and organic apples (see, doesn't it already sound repetitive?) The combo also was surprisingly good.  Go, figure!  I don't know if I've mentioned this before, but my older brother, John, is staying in town for a while. We were born only ~15 months apart, so we don't actually fit the definition of "Irish Twins", but we were pretty darn close.

Aren't we the cutest things? I'm not sure if he is making a peace sign or doing some dorky Star Trek thing, though...

John lives in Boston, MA with his lovely significant other, Condee, but they agreed that it was the right thing for him to come out here for a lengthy stay to be closer to me after my prognosis. Fortunately, he has the kind of job that he can do pretty much anywhere (as long as he has a landline - which is proving to be more challenging to find here in Silicon Valley than one would think). I am so grateful to him for having rearranged his life in order for this to happen and so grateful to Condee for being willing to accept his absence for a while.

I got to spend a lot of quality time with my older sister, too, the week after my surgery. Although I think I was a lot less perky then. Sorry, Sis! <smooches!> See you at Christmas time!!!

Spring 2013, Disney Princess Half Marathon with Seestor

I know not everyone has the ability to do this! Alert: This is a NO GUILT Zone!

 Kiddies, I'm just saying that there's something special about being together with someone so much that you lose that urge to fill every silence with words because you just don't feel like you have enough time to say everything you want to say.... and you are in ordinary situations when magical, spontaneous moments can happen. Bottom line:  Keep your family close to you if at all possible.

Oh, and just so you get this straight, I have no one to blame but myself for this situation. 22+ years ago, Steven and I moved 3,000 miles across the country, and it devastated my family. They tried to teach us that lesson long ago, but we didn't listen! (Darn kids!) I didn't really think my parents would ever forgive him for "moving me away" ...but I told him just yesterday that I think he's come a long way towards redemption as they've seen what a #ROCKSTAR he's been through this shit.

Speaking of the #rockstar AKA #baldhottie - It's been raining...I mean, like, REALLY raining here in San Jose (YAY!) , but Steven and I went out for our walk up Communications Hill anyway. I had gotten a brand new wool hat from amazon yesterday (with a  soft, silky interior - mmmmmm) to warm me up without irritating the bald, zappitied parts of my scalp. And Steven thoughtfully bought me some gloves at the store (awww!). We were toasty warm even despite the wind at the top. We talked about life, liberty, and pursuit of happiness - you know, the usual chit-chat!

Gratuitous picture of piggy in rain boots. (Don't be so serious all the time!)

Kiddies, I have already said that it is the daily connections that matter. These walks are the highlight of both our days. But here's a new lesson for you: You CAN walk/run in the rain if you have some good gear on. That's something we know instinctively as kids that somehow we forget when we get older. Humans don't melt!

By the time we had finished our walk, we had barely enough time to get ready for my radiation therapy appointment. I decided to make today's ninja star out of cheery colors (yellow & orange) to combat the gray skies:

It's a little messy because I was rushed and in the car, but between the things that I wrote in my email to my kids and the conversation I had with Steven, I knew the message I wanted to carry with me today:

BE PRESENT. LIFE IS HAPPENING RIGHT NOW!

I included the #planforit because I don't think that this is the same philosophy as just letting life "happen" around you. You plan to make it happen. But then shit happens and you need to adjust....And while it's all happening, be THERE, not thinking or looking for the next thing. Lamenting the fact that something "ruined your plans" ...Or worse yet, looking back and wasting time wishing you had paid more attention in the past. <--- Okay, that was stream-of-conciousness version, but I think that there's a theorem in there somewhere:

PLANS + SHIT = LIFE

 DEAL WITH IT + APPRECIATE WHAT YOU HAVE

That's a rough sketch, but I want credit when some genius solves the whole thing. This could be some Good Will Hunting kind of shit.

MY AFTERNOON

After my treatment, Steven and I went for lunch at a little Italian place. The pizza oven warmed the restaurant and created a perfect atmosphere to combat the rain. And - I kid you not -  a rainbow did appeared in the sky as we were walking back to the car. I'm not making this up. (Now, if I had said there was a cat riding a unicorn, I can understand how it would have sounded suspicious.) I thought about taking a picture of it, and then I decided, "No. I want to really SEE it. RIGHT NOW."

Another lesson for you kiddies: Look up and around. There are fleeting beautiful things that you will miss if you are always looking down. And you don't have to Snapchat or Instagram it all. (P.S. I'm not being a hater. You know I love me some social media!)

The rest of the day for me was spent under my Chemo Project Blanket (Love!), watching a few good movies with my brother and Steven. I got a surprise visit from a former coworker/friend, Irene. Unexpected extra hugs and gifts! Bonus love!!! Xoxoxo!

The object to the right is a "Dammit Doll". Irene said she wanted to get me a "Fuck It" doll, but they didn't have one. Haha!

EVENING

 I skipped my daily nap (which hardly ever happens these days!) because I was enjoying my rainy afternoon so much. So, my evening was short. But Steven made this simple meal of chicken and green beans (organic stuff  - DUH! - that John bought at Whole Foods). It was yummy! Did you know that organic chicken from WF actually tastes like CHICKEN?!  And we sat around the dining room table and "broke bread" together with Aidan. Until I went to bed at the late, late hour of 8:00 p.m.

This last lesson goes out to all of you that have someone in your life that is dealing with any serious illness: I know you feel helpless and that there is "nothing you can do". and it feels that way because, let's face it, what we all really want to do is give them their health back. and it sucks that we can't.

But what you can do is be one of the "small-ish" things in their day that make them smile, or laugh, or cry, or look with a sense of wonder. (If you can't be there in person - a card, a message on Facebook or Twitter, a text...it all makes a difference.) 

And if you are one of the people like me, who currently has a serious, shitty illness: 

Try, try, try to spend as much of your day as you can

Being Present 

and 

Realizing that LIFE is happening all around you...

including IN YOU.

So, kiddies, there you have it:

Open your arms, and let it in. This is LIFE! Right here. Right now.