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.

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.