The One in Which I Talk About Nuclear Families and Nuclei

I was brought up by parents who have instilled in me the value of "La Familia". (Nevermind that I'm 3/4 Polish and have not a smidgen of  Spanish) in me ...the phrase captures the feeling perfectly. It's more than "the family". It's The Family is Everything.)

Growing up, my family was all from the East Coast. In fact, when I was choosing a college, my parents gave me one constraint: nothing west of the Mississippi. They were afraid that I would meet someone from far away and end up moving, separating the family. I ended up at The George Washington University (yes, the THE is part of the name - Google that shit!) in D.C., so I did abide by that rule. The wrench in their plan was that Steven, from San Jose, California, was also attending GWU. In fact, we were living a couple doors down from each other in the freshmen dorms. Ah, we try to control our kids, but in the end...

We married in 1990, and in 1992, we moved to California "for a couple years" in order for his family to get to know us and our growing family. (That made sense to me because I thought, "Why should my family have easy access to the family, and Steven's be so far away?) It turns out, we can't control our parents or siblings very well either, because eventually Steven's sister & her family moved to Portland, Oregon (where his family lives), his father and step-mom built a home in Baja and spent about 9 months out of the year there, and his mom moved to Arizona. In the midst of all this, Steven began working in the wine business, so "a couple of years" in California has turned into the rest of our lives.

I give my parents so much credit for their determination to remain connected with us - especially their grandkids - despite the 3,000 miles distance between us. My 75 year old father still works full-time - Loves it! -  and travel has always been a part of it. They tie trips in with family visits and use airline miles to stay connected. When the kids were younger, my mom would buy duplicate children's novels to "read with" April on the phone. (Kiddies, this was all before Skype, y'all!) They still move heaven and earth to gather their children - and grandchildren when it works together as much as possible. The hiking trip (stay tuned for more about that!) is part of that. Oh, and Katherine & Aidan are off to Italy (for the 2nd time) in Sept./Oct. with Nana and Grandpa! So cool!

I wrote a whole blog already about my hiking trip with "Ma Familia" in New Hampshire last week, but I felt compelled to write about this first. We were sitting on the patio, and I was discussing how I was having difficulty adjusting to an obvious transition in our family. April is married with a husband and baby. She has her own new Familia, and that is her priority - and rightly so. Aidan and Katherine are infected by wanderlust and keep talking about living abroad, at least for a little while. Katherine already spent a semester in Spain while at UC Santa Barbara. Thank goodness for Skype!

In the middle of this conversation, I looked across the table at my mother, and we held our gaze as everyone chattered around us about the subject. Silently, she was saying to me, "See? See how hard it is to have your children go away?" I got it before, but now I really GET IT, if you know what I mean?

I get it now, Mom!

People talk about "nuclear families, but how does that take into account that cells divide, and there are more than nuclei? In the olden days, people continued to live close to their original nuclear family. FYI, My maternal grandmother was devastated when my father moved our family from NY to NJ because of his job.  We used to go to dinner at her apartment in Brooklyn on weekends, and she would load us with that blue tin of Danish butter cookies for the "long drive home". To this day, those tins make me think of her and those drives.  

Heaven forbid we should get hungry on the "long journey" home and resort to Donner Party-esque behavior!

My parents didn't forgive Steven for "taking the family away" until he earned his stripes through this challenging time we are going through right now. Being so far away, they've had to trust him to take care of me the way they would. I think that being a caregiver is a #freepass to La Familia, don't you?

For Steven and me, it's a New World, and we're still just trying to figure it out. We talked about this on our walk yesterday. We resolved to go on scheduling family traditional time, and whoever can come on any given day/year, we'll be blessed to see them. (Except Thanksgiving. EVERYONE must be there for Thanksgiving. (It's the first rule of La Familia, kind of like the Fight Club only different...)

Thanksgiving 2014

I've spent a lot of time recently thinking about the legacy Steven & I will leave behind when we are gone (whenever that may be). I hope that is at least one of them that we've passed down to our children. April was the one that made the rule that the siblings couldn't go to college more than 2 hours away.(Katherine cheated a little by saying, theoretically, one could fly to Santa Barbara in under an hour.)  This month we'll meet her halfway in between San Jose and Santa Barbara. A new world calls for adaptation and ingenuity, right? She's bringing her boyfriend. Hmmmm....we've yet to hear where he's from....or what he knows about La Familia....

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 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.

The One in Which I Talk About Thanksgiving 2014, Family, and a Tiny, Little Bit About What Comes Next

Thanksgiving weekend is nearly over, and it was everything I thought it would be and more. Emotional, Comforting, Inspiring, Exhausting...

It was the same recipe in some respects as every other year: WINE, FOOD, FAMILY & FRIENDS!

WINE: Oh, did it mention the wine? We own a winery, after all. I mean, our Thanksgiving is always AT the winery!  So, many of the guests enjoyed a glass ....or three or more....of some very good stuff.

But since I'm a total teetotaler these days, the most I can do is smell the wines.

Side bar: Sorry, but I had to google that shit and find out why people are called teetotalers. I thought it was TEAtotaler because they mostly only drink tea (which is true in my case), but it's actually TEEtotaler, and involved a stuttering Englishman who promoted abstinence (not to be confused with absinthe) in the 1800's.

I read it on the interwebs, so it must be true....Bon Appetit Article

FOOD: There was sooooo much food! And I'm sure it was delicious! We do a potluck every year so we get a smattering of everyone''s favorite Thanksgiving dishes. But with the chemo/radiation and the mix of other medications that I take, let's just say, "food is not really my thang".  P.S. This is NOT a weight loss plan that I would endorse. You don't even have to bother reading the fine print.

FAMILY & FRIENDS: We pared down our guest list considerably because Thanksgiving landed at the end of my 4th week of treatments, and we really had no idea what I would be "up to".  But there was no question that Thanksgiving at the Winery was happening. It's Steven's favorite day of the year. And what's better than getting together with the ones you love? (Hey, you! Mr. Literal! That was a rhetorical question.)

We're missing Eric Coffey in this picture, but we'll fix it later with a little photoshopping.

We had the ole' familiar gang plus some family that came from far away especially this year. I am really, really not being bitter or cynical at all. I sincerely mean that. I was so happy to have everyone there!

But there is nothing like a potentially fatal disease to change people's holiday plans. I am so early in the diagnosis and treatment process that there is a whiff of, "Maybe she won't be alive next year," mixed in with aromas of turkey and sweet potatoes. I guess it would be stupid not to think of that at least a little.  I have let those thoughts float through my head as well - and right back out.

I have two things to say about that:
1) Anyone of us might be gone by Thanksgiving 2015. (Thank you for your uplifting insight, Captain Obvious!)
2) I look at things through my own specific lens. I do most things with purpose, and before I do them, I think:

It is productive?
What is your desired outcome? Will what you are doing now help you get there?

[FYI - This isn't some new thing that I've developed after my diagnosis. This has been my approach to life for a very, very long time. I would even dare to say that this is a "defining characteristic" for me.]

So, I ask myself, "It is productive to think/dwell on the fact that I might not be here next year?" What is my desired outcome? To live a fucking long time. Like decades. Another half century would be really good! Does focusing on the fact that I might die far sooner than that help me in my desired outcome? No, in fact, I would argue that it is extremely counter-productive. 

So, I spent my time this Thanksgiving enjoying the place and the people and the moments. It was a gorgeous autumn day in the Bay Area. ~70 degrees and sunny. Groups spent a lot of time out on the patio drinking wine, eating cheese, and admiring the foliage on the vines.  Some people congregated in the kitchen as the finishing touches were put on dishes. And we all gathered in the barrel room for the feast and had the traditional go-around-the-table-and-say-what-we're-thankful-for tradition. (We are aware of how much the younger generation hates this, but make them do it anyway. Either because we're cruel, or someday they might thank us. I'll let you decide. Often they have the most insightful things to say anyway.)

I insisted on going first, bucking tradition, because I was afraid I was going to forget what I wanted to say (#chemobrain). Of course, I wanted to express my gratitude to all my family and friends, near and far, who have supported us through this shitty, shitty time. If you weren't there, here is a recap: I said, "THANK YOU!"

But I also wanted to specifically address my children publicly. I talk about Schmoopy AKA the Bald Hottie a lot, but I don't talk about my kids very often on this blog. Not because I don't think about them ALL THE TIME, but my feelings are so raw and deep. And I know that they are so strong in front of me to not add to my stress/burden, but this is a shitty, shitty time for them, too. I know that.

I don't know how we ended up lined up like this - clearly, it's not in height order because I'm the shortest by far...

I am so grateful to have them in my lives. But I am also extremely grateful that they have each other in their lives. I have never seen a sibling group that was so supportive and loving and strong. I asked them if they have a name for their group. "Mirassou Siblings" doesn't do them justice. Then again, they aren't nearly as hokey as their Mother Fuckin' Brain Cancer Fighting Ninja Warrior (#mfbcfnw) mom. Whatever! They need a hashtag at least, though, right?And I am so grateful that I had the good sense to pick a man for their father who is the rock that we cling to right now. Although shaving his head has made him slipperier.

P.S. You will undoubtedly see a shift in my blog focus as I finish this chemo/radiation treatment cycle. (2 weeks to go! Woot!!) I am starting to think about the "after initial treatment" part of my life. I'm actively thinking about the "Now what?" and making plans. Which is a big ball of Excitement and Anxiety rolled up in a ball we call LIFE. Stay Tuned!

Marriage & Parenthood

Steven couldn't sleep and came back to bed just now. It was 4:44. It happens to us.
Yes, not being able to sleep well. That happens to everyone. But what I meant was...we'll look at the clock, and it'll say 4:44.

That was when April Marie was born.
4:44 p.m. May 1, 1987.

Some of you have heard this story, but many of you have not. But all of you bear with me, because I'm going somewhere with this... it's not just a "birth story". Although birth stories are nice - or there wouldn't be so many reality shows about them. But do you ever notice how people feel compelled to tell you their worst, most painful birth stories when you're pregnant? Especially when you are close to your due date?  What it is it with that? Be warned, April, because it is coming.

Because some people are just stupid. That is all. Sorry.

But April's birth story is different. Because her Daddy was not there when she was born. In fact, Steven and I weren't even dating when that happened. Actually, I dated Steven's best friend all four years of college.<gasps!>  And Steven was "the third wheel" sometimes - the boyfriend's best friend who would frequently join us to see movies or grab a drink. But I didn't mind, I always had a crush on him, but the timing wasn't right when he made his move (see previous post about his attempt at a first kiss). And so life happens that way sometimes.

We graduated in May 1986, and Steven went back to California for a break before he started graduate school at NYU. I toured around Europe for six weeks over the summer - two of which
The College Boyfriend joined me. A kick-ass graduation gift from my parents! (Thank you, Mom & Dad!) I brought home a lot of memories and then settled in D.C. to figure out what I was going to do with my B.A. in International Affairs. hmmmm.... I had a Peace Corps volunteer application partially filled out on my dresser when I found out I was pregnant. I guess I brought more than memories home from that trip...

[FAST FORWARD NINE MONTHS - blah blah blah - and No, April, I won't tell you my labor and deliver story! This time. haha!]

The College Boyfriend "opted out". and by that I mean he checked the box where he had to take NO responsibility for "said baby". (Kiddies, I like to leave you with lessons in my posts, so I just want you to know that there is no box like that anywhere, and I could have went ninja on his ass for child support payments.)  But I just wanted to move on. It was complicated.  And my parents, like they always do, stepped up and supported me. Because one of the things that you learn in our family is that Family is Family. I gradually started to get back on my feet.

Chillin' with Baby April, summer of '87

 And who should waltz back into my life but...Steven. Because it was time to start his graduate program at NYU. Now disentangled from The College Boyfriend and still crushing on Steven, I started to go to up NYC to visit him. Yes, often with April, who was all of 3-4 months old.


I remember one very poignant moment when we visited him, and he was so proud because he'd bought her this jean jacket...I mean, the tiniest, cutest jean jacket that you could ever imagine. There was some street fair or farmers market going on in The Village where he lived, and he wheeled her in the stroller with that jean jacket on...without ever skipping a beat. It was so...natural...

When she could speak, she called him "Dee-shish", which was her closest approximation of "Steven". And then we decided to get married, and she started to call him Dad.  He is the only Dad she's ever known and we made it officially a couple years later. 

This is around Christmas 1989 when we were engaged, and Steven was now officially "Daddy".

I'm going to FAST FORWARD through a lot of stuff again, because April is 27 now, for goodness sakes! It would take eternity to list how many times Steven has stepped up, and proven himself as a husband and father. But I woke up thinking about this one. at 4:44.

Okay, Okay... I will just give you a little highlight because it is one of my favorite pictures:

April's Daddy walking her down the aisle at the winery, August 2013

One of my favorite movies of all-time is Parenthood (1989). Not the tv. show - the movie. Yes, the t.v. show is good, but the movie...It manages to wrap so many of the emotions: romance and turmoil, joy, anxiety, and anguish of marriage and parenting ...AND it has a happy ending. It's close to perfection. Be warned - it's PG-13, because as I recall, there is a lot of swearing in it. Oh, wait. You read my blog, so that clearly won't deter you.

I don't want to give it all away because ...GEEK (& NEWS ALERT): I think they might be playing it at the Vine in Livermore for Steven & Me on January 14th. or 13th. or 12th. Save the date(s)!!! and stay tuned for more info!

But there's this one scene where Julie is freaked out because she thinks her husband has seriously injured himself in a racing accident. She's protesting to her mother (Helen) that she doesn't want to go into the emergency vehicle.

Julie: I can't do this! This is too intense!
Helen: This is marriage! 

See, I told you I was going somewhere with this! It may take me some time to get there, but I get there eventually.  Did I mention that I have brain cancer? #freepass

No one tells you on your wedding day that there will be days "like that" (unless they're a dick), but you better be prepared to step up. Because there will be joy and romance, but there will be anxiety and turmoil, and I truly, truly, truly wish for all of you that there will the minimum of anguish. But that is part of life, after all, isn't it?

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.