Tuesday, December 23, 2014

Short, but Sweet

As I repeatedly go thru folder after folder of digital pictures, you what I'm realizing?  As this fucking disease was taking greater hold of Jill us, our life - our nucleus - was getting better, stronger, closer to our version of perfection.

What a fucking realization this is.

It's a cruel one, actually.

As our trio's relationship grew stronger, so too did this horrific disease.  Did the fucker feed on love?  Not possible...right?  (Though I'll take a leap and assume it's not been studied from this angle...)

There's no bow tied on this post.  Just a brief observation that struck me hard and moved me to share.

We had a damn good life together - Jilly, Ro, and me.  And now I consciously put it upon myself to ensure it is not overshadowed by the thing that made this trio a duo.

Short, but fucking sweet.  That was our life together.  Today I choose to focus on the sweetness.

All love,

J, J, & r




Friday, December 19, 2014

Sleep. Snap. Repeat.

Years ago when smart phones hit our hands, Jill and I started lightly razzing one another.  When one of us left our phone unattended, the other would scoop it up, snap a ridiculous (PG) pic of ourselves, and quickly assign it as that phone's screensaver.  Admittedly, Jill was more consistent than me.

As a result, I'd often flip open my phone (that's right, the flip phone, baby - still love 'em) to see a jolly, but deranged Jilly face staring back at me from the screen.  A quick and ridiculous way to inject joy into one another's day.

As technology evolved, so too did the game.

Looking back, I think my way of dealing w/ the stress of our roller coaster was to sleep it off.  I didn't show a lot of emotion - little-to-no tears, no screaming, certainly no violence.  I was aware of my position and needed to play the part of the rock, Jill's rock.  And I think I did it well...when I wasn't sleeping.  That was my escape...how I dealt w/ the madness that tended to be our reality.

We'd often come home from a long day of doc appointments and I'd be drained from posing as the 'strong' one.  So, once Jilly had what she needed, I'd very naturally curl up to the closest couch or bed that would have me and pass the fuck out.  Sleep truly was my escape from reality.  Still is.

Jill had the Gilmore Girls, West Wing, a few iPad games, and books.  When she wasn't socially engaged w/ friends or family, these outlets were her escape tools.

Netflix and a book may help me from time to time.  But, more often than not, I couldn't underestimate the power of the nap.  It just pulled me in.  It was a crucial part of my coping.

And Jill knew this...though she had her fun w/ it, too.

I now realize how often these naps occurred b/c they are documented.  They're documented in photos stored on both our phones.

I'd conk out.  Jill'd grab a phone, snap the picture, and go on doing what she was doing.  Oftentimes I wouldn't see a pic until weeks later.

"When did you take that?" I'd ask, pointing to a picture of me on the couch, mouth agape, w/ the dog snuggled at my feet.

"That one?  Oh, probably a few weeks ago.  You hadn't seen it.  Keep scrolling.  There's more..." Jill would respond w/ gleeful pride in her voice.

And so it went.  I'd get my escape sleep and Jill'd document it w/ a series of photos.

Seriously, I could probably drop $75 on a thick Shutterfly album - all pics of me sleeping.  No good.

And now here I am.  I can't fucking sleep.  Well, I shouldn't say that.  I sleep.  I just have a really difficult time getting to sleep at night...and then waking up in the morning.

You try going to sleep w/ the same person for over ten years and then (somewhat) suddenly have to do it on your own.  (On second thought, don't try it.  Please.)  It's unnatural.

Quite simply and eloquently, it sucks.

I try to sleep to dream her.
I try to think of our shared moments.
I try not to think of Jilly.
I try to plan the next day.
I try to read myself to sleep.
I try to meditate.
I try not to try...

So far, no recipe for successful sleep.

If I just knew once I fell asleep I'd wake to one more picture that Jill snapped of me while I was out...

I think I need another plan.

All love,

J, J, & r





Wednesday, December 17, 2014

What's in a Compliment?

I've always been able to dish a compliment.  Just can't accept one.  Though with Jilly's help/insistence, I've gotten better over the years.  Before reacting w/ a sarcastic retort, I swallow it (save it for later), and respond w/ a simple 'thank you.'  It's tough, but I'm growing up...a bit...despite ulterior efforts.

But, like I said, I can give a compliment.  In fact, I like to.  And while they may not be given in great detail or description, they are always sincere.

Case in point - I would often compliment Jilly when I thought she looked especially beautiful.  Maybe she was wearing a new shirt, pants, skirt, or dress.  Maybe it was a new haircut.  Maybe she just looked damn good.  Whatever the case, if it fell inside this compliment category, I would often look her in the eyes and say, "You look nice."

(Quick tangent: At what point do you begin to call a woman's 'shirt' a 'blouse'?  Is there an age cutoff when 'shirt' is no longer acceptable and must be replaced w/ 'blouse'?  Or, was 'blouse' only used in the 40s and 50s?  Or, does it depend on the attire being discussed?  Eg. If the top is formal, call it a 'blouse'.  Casual?  Label it a 'shirt'.  Please advise.

I tend to define 'blouse' usage like I do 'slacks.'  I find it inappropriate to for anyone to utter the word 'slacks' if you are below the age of 50.  Jill backed me on this one.

Back to my compliment eloquence..) 

Lame, right?  Sincere, yes.  But, underwhelming on its surface.

I mean, the line certainly was genuine.  I didn't gloss over it and move on to another topic.  I'd take a beat and give her the compliment.  It was real.  They were all real.

Jill's response to this line was always always always the same.  "I am nice."

And it is in these two lines - You look nice.  I am nice. - that really displays our understanding of one another.

Jilly knew my inarticulate compliment came from nowhere else but my heart.  I said it.  I meant it.  I just didn't dwell on it, for lack of a better word.  I certainly wanted her to know how I felt at that moment, but didn't want to make a whole 'thing' of it.  Maybe I needed to more often.  But, when I catch myself looking in the rear view (as I do so often these days) to see if I did enough good to and for Jilly, for this one anyway, I think I'm in the clear.

Jilly absorbed each and every compliment I lobbed her way with great affection and understanding.

Jilly knew 'You look nice' was more than just those three words.  That line encapsulated so much more - You are stunning, I'm taking a moment to be thankful for you out loud, I'm so damn lucky, I love you, and on and on and on and on...

Jilly knew that.  And I knew she knew.  I don't think I can begin to express how comforting that is, how that feels.  If I had to put a label on it, I'd probably call it love.

I don't know.  Maybe this particular J&J post is too 'inside baseball.'  Maybe I'm not communicating it clearly enough for you to empathize.

That's okay.  Jilly gets it.  She gets me.

All love,

J, J, & r


Happy Holidays (circa 2006)

Jill was always great at grabbing a camera and capturing a moment.  Unfortunately, b/c of this, I'm finding her more behind the camera than in the frame.  This video is no exception.  But, it's a brief beauty worthy of a view.  Watch Ro.  Listen to Jilly.

Happy Holidays indeed.



All love,

J, J, & r

Friday, December 12, 2014

Nothing Means Something

It was another scorcher in Houston.  Thankfully Moonpie's A/C was keeping us a cool 68 degrees in the cabin.  (The exact temperature I do not know.  Moonpie is not equipped w/ a thermostat.)  The point is, we didn't feel the three-digit temp outside.  (And yes, Moonpie still expels A/C like a boss.)  

Jill and I were driving thru the Galleria area, likely on our way to another eatery.  (Tex Mex - yes, please...in a past life.)  We were in the midst of a conversation when I stopped at a red light.  As Jilly continued to speak, I listened('ish), but also recognized a couple - really a trio - on the corner of the intersection...waiting...broiling under the angry sun.  I quickly labeled them a 30-something husband and wife w/ kiddo in stroller.

At this stage, Jill and I had only been married for a year or so.  The shine had not yet worn off.  (Honestly, it never got the chance to.)  So, this particular family was several years ahead of us on the familial timeline.

So, I'm watching this family of three and I notice both the husband and wife standing somewhat next to one another, but gazing, zombie-like in different directions.  Neither is speaking.  You would think each of them was alone if not for the closeness they were to one another.

Immediately this thought struck me, "I never want to end up like that family - disengaged and aloof."  It was a memorable moment for me.  So much so that I'm tapping back into it nearly a decade later.

Obviously I'm projecting here.  Admittedly, I don't know who they are or what they're thinking (aside from, "Why is it so fucking hot all the time?  Did someone piss off the sun?"  We all thought that.)

Flash forward five, six, even ten years.  When I look back at the scene on that street corner, I see it thru a different lens.  Yes, experience yields new perspective.  And my life experience since that moment paints a different picture of that family of three.

Jilly and I were very good, very comfortable at doing nothing together.  The company of one another was more than enough - even if it was in silence.  Anything else was icing.

In my opinion, you can't underestimate the ability to do nothing with someone else.

So maybe that's what that couple in Houston had mastered (or was in the process of mastering) - doing nothing together.  If so, well played, sweaty couple.  Carry on.

Or, shit, maybe they were miserable b/c of the fucking heat.

Hot or cold, Jilly and I could do nothing together like champs.

All love,

J, J, & r

Closest to 'doing nothing' that I could find...

Thursday, December 11, 2014

The Voice

(If you immediately thought of the reality TV singing competition, you've come to the wrong place.)

We knew.  The odds were not even close to being in our favor.  As Jill always said, "Science just needs to catch up."

That's not to say we didn't have hope.  Our lifeblood was hope.  W/o it this would have been a much shorter, much darker journey.  It's just that our hope coexisted w/ reality.  Some days - like when a chemotherapy had run its course and we needed a new plan - reality kicked the shit out of us.  But, we lifted one another up and grabbed onto that hope once again.  Amazing how a person can almost be fully functional w/ a little bit of hope.  (It's when that hope is snatched away that you crumble.)

But, as days, months, and even years passed, we began to recognize that science wasn't catching up...and our 'mass medicine' options were running low.  We could start to see the end of the track...though we didn't focus our attention there.  (That's when I started to take deeper breaths on a regular basis...just to quickly reground myself, keep calm, and be that rock that Jilly needed.)

In effort to consciously have more meaningful, elongated conversations, Jill and I began to record ourselves at night...just audio, no video.  We even toyed w/ the idea of making these conversations into a podcast.  (Come on, everyone's doing it.)  Each conversation - 45-60 mins in length - centered on a certain topic - friendship, finances, fear, and a couple others that didn't start w/ 'f.'  We did five in all.  (I wish we did 500.)  I'd hit record and we'd just talk, free form.

I listened to a couple last night.  (I don't sleep much at night.)  And it's that voice, that fucking beautiful voice.  I can look at pictures for hours on end (and I do).  It helps (& hurts at the same time).  But, her voice.  Jilly's voice.  The inflections, the volumes, the emotions, the cadence, the sincere warmth - I miss and love it all.  Really, this is not some rearview rose colored glasses feeling.
I can genuinely recall being in conversation w/ Jilly this past year and truly, actively listening to the sound of her voice (probably omitting the context her words).  I knew that there was a limited shelf life to that voice.  And I was trying to permanently engrain it in my head, in my heart.

And thank God for the voice memo app on the iPhone.  I have about a dozen 2-10 minute audio files that I recorded unbeknownst to anyone present to capture little snippets of our daily life...the 'tiny commonplace.'  I played one for Ro this morning before school.  As we were finishing up breakfast, I played Mommy singing a song from Ro's second grade play.  It's freaking magical.  Ro lit up and I light up every time I hear it...honestly, every time I hear Jilly's voice I glow.

It's comforting.

It's home.

Got anyone w/in earshot that you love, adore, and/or admire?  Ask them something, anything.  Then really, truly listen to their voice.  It's like nothing else in this world.

All love,

J, J, & r




Tuesday, December 9, 2014

Grandma & Jilly

I'd come home from work and we'd all end up in the kitchen, prepping dinner, doing homework, and catching up on our days.  The usual stuff that I assume most functional families participate in...nothing out of our ordinary.

Often times Jill would mention, "I got to talk w/ Grandma today."  My grandma, not hers.

From the moment the two of them met, Jill and Grandma hit it off.  (To be honest, there weren't many people that Jilly didn't find some immediate connection to...unless they were full on curmudgeons.)  Almost immediately Grandma gained a grandchild and Jill a grandmother.  Jilly just had a way of shortcutting her way into the family.  She just had a way about her.  It wasn't forceful.  It was warm, open, honest, natural.  Really, all the qualities that originally drew me to her.

And so it was.  The relationship grew to where Grandma and Jill spoke at least once a week.  And if I'm honest, that may be more frequently than I spoke to my own grandma.

It was quite a beautiful relationship.  Each would call the other just to check in.  Grandma nearing (then into) her eighties was contracting some health issues.  And we're all up to speed on Jill's health challenges.  The two of them would look out for one another from a distance (Grandma in Tennessee), making health related suggestions on a regular basis.  Whatever they could do for each other to make life a little bit easier, they tried.

At one point in this last year, Grandma refused to drink water.  She didn't like the taste.  (What?)  We needed a plan.  Immediately, Jill had two.  1.  She ordered and mailed Grandma an infuser.  Grandma could fill the pitcher w/ water and infuse it w/ different fruits to mask the taste of straight water.  Brilliant.  Grandma didn't use it.  2.  Jill suggested sending Grandma one of those old school helmets flanked w/ a bottle on each side w/ straws that come down to your mouth...so you can walk and suck w/ ease.  Jilly even wanted to brand it w/ the Pittsburgh Steelers' logo (Grandma's hometown team) to make it more appealing.  Ultimately this one fell thru...

But, again, just a couple examples of how they cared for one another.

Grandma would call me periodically, quickly - but sincerely - ask me how I am, make sure I'm upright, then dive into Jill.  "How's Jilly doing, honey?"  And she always had a suggestion to make things better.  Is she taking this?  Consider taking that.  Try using this when that happens. 

Jill and Grandma had have a genuine adoration for one another.

And as of last night, the two of them are now reunited.

Please please please continue to look out for one another...and if time permits, help me guide that beautiful eight year old into a bright, prosperous, and healthy future.  Love you both, always

All love,

J, J, & r & G


Monday, December 8, 2014

Rory, in her own words...

One note:  As my dad and I previewed this video, we could overhear Rory belting out holiday tunes from her shower.  The kid is gold.



The Spirit & the Soft Spot

I'm not religious.  Jill was not religious.  (Let the judgement begin.)

This is not to say we didn't have beliefs.  We did.  We do.  We have a belief in God, in spirit, and certainly in one another.  We just - for better or worse - didn't subscribe to a particular set of religious beliefs under one single religion.  Jill was (in my opinion) great at picking and choosing from different religions what best fit her individually.  I, on the other hand, am Jewish by label...but it doesn't run much deeper than that.

And while Jilly was very comfortable w/ her own belief structure, I've always had difficulty building my own.  It's always always always been an internal tug-of-war.  I need religion.  It will make me whole and provide a solid foundation and direction for my life.  Then from another lens, it appears to be the root of all/most conflict on this planet.  So, there's that.

Like Jill, I've always had a nebulous belief in the afterlife.  Not so much hell, but some undefined post life dimension of sorts that we all enter after this phase on Earth.  And I think it's b/c of my our belief in the spirit.

During Jill's last few months, we had many difficult and honest discussions w/ Rory.  (Conversations I hope you never have to have w/ a child.)  We expressed to her that Mommy's body was breaking down and would not last as long as we'd all like it to.  But, the spirit.  Mommy's spirit will (and does) live on.  So, while you'll see Mommy's body appear lifeless, you'll know that her spirit continues on, taking on another form.  We introduced the term 'vessel.'  Mommy's body was simply a vessel for her spirit.  And thankfully Mommy's spirit will never die.  And as long as we keep Mommy in mind and in heart, her spirit will continue to live inside of us forever.  This was as comforting as it could be to an eight year old.

Having these discussions in bed w/ Jilly and Ro helped reinforce my belief in the never-ending spirit.
But doubt, as it always has, remains.  I'm a proof guy - always have been.  Show me and I'm in.

I've found myself in recent days thinking about the spirit and this now-more-appealing-than-ever afterlife.  And what I keep thinking is that it has to exist.  In other words, what we had can't be it.  It's not enough.  We're not done.  We get a second act, right?  We have to.  I'm not going to say it's only fair that it occur...b/c I know firsthand shit just ain't fair.  But, not surprisingly, now more than ever I have to believe.  I have to believe I'll see my wife again.

If you look down at the outside of your hand, there's a spot between your thumb and index finger, kinda near the webbing.  (Is it called webbing?  We're not frogs.)  I don't recall how or when I stumbled upon it.  Maybe in a moment of holding hands early in our relationship.  But, Jilly had the softest little spot on both her hands.  And for whatever reason, like things do in close relationships, touching that spot stuck.  It seemed to provide equal comfort and calm for both of us.

I found myself touching that spot on Jill's hands a lot in the last few days before she passed.  I wanted her to know, to feel that we could both be comfortable, now and in the future.  I hope she felt it.

So, while doubt still nags at me, I have to do believe our spirits will find one another once again.  And when they do, I believe that reunion will come w/ that feeling of comfort and calmness we both used to get from that soft spot on Jilly's hands.

(lots of deep exhales)

All love,

J, J, & r


Thursday, December 4, 2014

"...the tiny, heartbreaking commonplace"

It's grey today - both outside and inside.  And that's fine.  To be honest, Jill and I always liked the grey days...maybe me a bit more than her.  (The atmosphere created by the grey lends itself well to my musical tastes.)

But today feels different.  Maybe b/c I can't share my grey w/ Jilly.  Maybe b/c today I've embraced the ever-present lethargy that has waited for me to cave in for weeks now.  Maybe I'm just freaking tired b/c I delay going to bed alone at night.

Regardless, here I am.  I have a stack of things to tend to.  I need to get out for a run - fight the lethargy w/ mobile therapy.  But, the air around me feels just thick enough to keep me here in my room.

Many people play the WWJD card.  In my case, I often find myself asking, "What would Jill do?"  And not only that, but "How would she feel about what I'm doing right now?"  "How would she react witnessing me in my current state?"

And if I know my best friend, she'd tell me I'm where I'm supposed to be right now.  Don't try to do it all at once.  "Give yourself a break," she's told me time and again.  My pushback to her has always been that I don't need, nor do I deserve a break.  I'm not overdoing anything.  I'm not overtaxed.  Yes, emotionally I'm in a perpetual funk.  But, as anyone will tell me, I get to be right now.  I'm functional.  I laugh.  I love.  I'm just not at a comfortable level yet.  And maybe knowing that fact is part of this still-fresh battle.

Those of you that are reaching out to us - via text, phone, e-mail, etc. - are incredibly helpful.  To be clear, just the checkin, just the request to help is enough for me right now.  I don't need you to cook for us (right now).  I don't need you to fill out social security forms w/ me.  But, you're inviting Ro and me to do things.  You're not pushy.  You're just there.  And Jill knows this.  And she's smiling b/c she didn't want me to become a recluse.  Like Ro and me, Jilly is comforted simply by the fact that you are present in our lives.  And we all thank you for that.

So I'm slowly, deliberately reading a very short book that a dear friend so thoughtfully gave me after Jilly passed.  I was reading it this morning after I dropped Ro at school and one particular phrase struck me w/ such truth that I read it again and again and again.  The author is expressing all the ways in which he misses his deceased spouse and he ends his list with "...the tiny, heartbreaking commonplace."

That is it.

As a duo, then a trio, we did things.  We met people.  We went places.  But, it was the little in-between spaces, the spaces I (assume) no one posts about on Facebook, that were the richest parts of our coexistence.

Admittedly, Jill was clumsy.  On more than one occasion, she'd walk into a doorframe or bump into a table.  I'd hear it, turn my head.  We'd meet eyes.  She'd laugh.  We'd laugh.  I miss that.

Jill can't find anything...b/c she'll leave anything anywhere.  Invariably before heading out the door, she'll ask me where she left so-and-so.  "I don't know," was invariably my response.  Thus Jill's zigzagged hunt thru the house began again.  I miss that.

Each night before bed, Jill had to have the sheets and comforter just so.  The sheets needed to come out and fold back over the top of the comforter.  Why?  "B/c that's the way it's supposed to be."  It didn't matter if I was already in bed reading or sleeping.  She'd get in bed, lean over me, completely and intentionally disrupt me, and quietly repeat, "Don't worry, I'll fix it.  I'll fix it..." as she'd proceed to 'fix' the covers for us both.  It was a nightly occurrence that always irritated me.  This one - for whatever reason - I miss more than most right now.

"...the tiny, heartbreaking commonplace."

Humor me.  Stop for second.  Take a breath.  Look around.  Embrace the commonplace.

It may be common.  It's not forever.

All love,

J, J, & r

Tuesday, December 2, 2014

Wrinkles

This house is too quiet.  Even when it used to be quiet, the silence was created by three, not two.  The silence of two is different.  Right now it's darker.  It's heavier.  It's intoxicating.  I know it won't always be like this.  But, right now, it just is.

I was folding laundry and moved to punch out this post.

I was the dishes guy.  I'd cook.  I'd organize.  And I was the default dish washer.  That's my wheelhouse.  I got that.  You've got a dirty spatula?  I'll make it shine again.  (I don't like to do it, but I get the job done.)

Jill was the laundry lady.  It wasn't something we labeled one another.  But, when our household fell into place, it just so happened that I was on dish duty and Jill made sure we wore clean clothes.  It worked.  It all worked.

Even when it didn't work, it worked.  We worked.

So I'm in the middle of my second laundry load this evening.  No big deal.  I got this.  It's not like it's a manual process.  I load the clothes, pour the detergent, and push a few buttons.  Go.  Not a problem.

Where I get hung up and what really moved me to post this one tonight is the post dryer scenario.  In other words, the folding.  Give me towels.  I can fold towels all day.  I'll stack 'em and shelf 'em.  Done.  But, clothes...more specifically, shirts, I've got a problem. I've always had a problem.  It's like I need a tutorial from a part time Gap employee.  They can fold like champs.  (Do champs fold laundry?)  Here's the thing.  I can get the job done.  I can make do.  But, Jilly didn't make do.  She folded that shit like someone was watching.  Tight corners.  No wrinkles.  No random cuffs tucked in to disguise shoddy work.  (Been there.  Am there.)

We actually had conversations (plural) about this.  She'd patiently tutor me and we'd laugh at my failure.

Now it's on me.  And I wonder, does Ro recognize my inability to match her mom's folding skills?  Does she look at her stack of clean clothes and think, "Is this what I'm left with...a guy that can't even properly fold a shirt?"  Does any iteration of this seep into her always-on brain?  Is my inability to fold a microcosm of my parenting abilities?  If he can't fold, he can't parent at the highest levels.

Don't get me wrong.  We're getting by.  We're getting to school on time.  No one's wearing paper pants.  Right now we're making it - one cliched day at a time.

But just making it isn't enough.  This kid - my daughter, my focus, my center - needs to have the ability to thrive at every opportunity in life.  I don't want anything - including me - to stand in her way of greatness.  If you ask me (you didn't), she's already great.  She excels.  I want this to continue.  I need this to continue.

I talked about this w/ Jilly.  "I don't want to break her," I'd say to her, holding back tears.

Jill said all the things you'd expect Jill to say - all things supportive, reassuring, and sincere.

But the truth is no one knows how we'll handle tomorrow.  We had much better odds as three than we do now as two.  Will I position it that way to Ro?  Never.  Will I do everything in my power to ensure she has the brightest future possible?  W/o a doubt.

It just may be that we're wearing wrinkled shirts along the way.

All love,

J, J, & r

Monday, December 1, 2014

"Party on 7"

For nearly seven years, we had a fairly consistent oncology appointment schedule.  We hit Siteman Cancer Center once a week or once every two weeks, depending upon the severity of the situation at any given time.  (Sometimes we needed to be monitored more closely.)

Given the frequency of our visits, we knew the ins and outs of that hospital building...

Looking for the best non handicap parking space mid morning on a weekday?  Enter the attached garage and loop your way up to the fourth floor.  But, here's the trick.  Nearly complete a circle on the fourth level and begin your descent back down toward level three.  It's on this stretch that you'll always find 2-3 decent spots...close enough to the center's entrance/walkway.  (Of course, throw this logic out the CR-V window when your spouse can no longer walk on her own.  You roll out the fucking red carpet, pull up to the front doors, and take every necessary step to ensure she is comfortable and not overly exerting herself.)

Tired of waiting for the overly congested elevators on level three to make themselves available to you?  Been there.  If you're headed up to the breast cancer floor, there's a separate express elevator bank to the left that will take you directly to the seventh floor.  Find it.  Use it.  Thank me later.

If you're like my wife, you don't want that generic bullshit coffee they spew out of plastic boxes that look like they were left there in the 80's.  So, head over to St. Louis University's College of Pharmacy bookstore.  It's only an elevator ride, hop, revolving door spin, skip, zigzag walk, and jump from Siteman.  The bookstore has a Starbucks ready to accept your $5.65 in exchange for the "Grande soy white mocha, one pump, no whip."

Often times (when Jill was healthy enough for it and we were a bit running late) I would drop her off at the first floor entrance, allow her to check in, and I would then park the car and meet her inside.

I don't know how it originated, but a habit, a ritual of sorts, formed.  I'd pull up alongside the curb.  Jilly would pop out, hold the door, look back at me (w/ a freaking gorgeous smile) and always always always say, "Party on 7!"  Meaning, it's time to do this.  Let's go to the seventh floor, heads high, and make the most of this situation.  My response to Jilly was always the same, "Party on 7!"  Every single damn appointment day.

(B/c I tend to deflect the severity of situations w/ humor, in later months, as Jill would walk away from the car, I would roll down the window and add something loud like, "Make sure to ask the doctor about that nasty fungus that seems to be spreading!"  There was no such fungus.  But, damn it, it made us both laugh.  Mission accomplished.)

Somehow "Party on 7" spread among the seventh floor regulars (staff mainly).  We'd check in for blood work and they'd say the phrase to us as we were signing the clipboard.  They loved it.  We loved that they loved it.  It was something so simple, so effortless, that allowed us to exhale and just barely take the edge off...just enough to get us through another day of appointments.

B/c for me, appointment days knocked me out.  They were so emotionally charged.  What will the numbers look like today?  What's the plan?  Do we have a plan?  Can we get treated today?

It was the little things like "Party on 7," a white mocha from Starbucks, an express elevator, that made appointment days more manageable for Jilly and therefore for me.

Jilly faced the music every fucking day.  And some days it was louder and noisier than others.  There have been a lot of beautifully honest things said of Jill since November 12.  In my opinion, the strength, focus, and positivity she showed every single day (I'm not kidding - every single fucking day) was heroic, admirable, and super human.

Jilly, you partied the fuck out of 7.

All love,

J, J, & r

Good report dance party on 7 circa 2012...


Sunday, November 30, 2014

Let it Snow

Jill and I didn't always see eye to eye when it came to music.  She leaned toward country and radio pop.  I pride myself on favoring semi-obscure tracks...though Jill would refer to my default preference being 'sad bastard music.'  I can't disagree.

That in mind, for some unknown reason, I've always had a soft spot for holiday tunes.  From the day after Thanksgiving thru Christmas Day (only), I can't get enough of the festive music - primarily the standards --> anything by Nat King Cole, Ella Fitzgerald, Ray Charles, peppered w/ Harry Connick Jr's first Christmas record.  I eat it all up.

Over the years, I've been told by my goyim friends that the reason I can even tolerate such music is b/c it wasn't jammed in my ear holes every holiday season since birth.  This makes sense.  Growing up, our Jewish household didn't fill the Chanukah air w/ sounds of Perry Como's "Do You Hear What I Hear."  If we had, I'd probably rebel, too.

But, then I met the goy/girl of my dreams and all bets were off.  I remember our first Christmas season together.  Jill and I drove up to meet her family in Iowa.  We rocked those holiday tunes the whole six-hour trip up.  Why?  B/c we both enjoyed the warm feeling we got from listening to it.  It's like an audio blanket.  There is just something comforting about holiday music.

So, for the Jew and the Jill, we embraced our appreciation for Christmas music each and every holiday season.

And as Rory and I drove home from Tennessee yesterday, we turned those holiday tunes up.  And as we listened, we talked about the songs that meant something to Mommy.  For example, Jilly loves "All I Want for Christmas" by Mariah Carey...but she despises Mariah herself.

It's these minute, arguably meaningless memories that add to the definition of Jill, the definition of Mommy.  And so we'll continue this conversation all season, every season.  We'll turn up Brenda Lee and we'll dance to the Drifters.  And we'll honor Jill with each passing track.  B/c it's the holidays.  And Jill knew how to do the holidays.  Here's proof...
All love,

J, J, & r

Saturday, November 29, 2014

"Every day's a good day"

Nearly seven years ago we were gearing up for our first chemotherapy treatment at Siteman Cancer Center.  We prepped thoroughly - reading online, checking out a few books, and pummeling our oncologist with question after question.  Still, this was new.  We were voluntarily allowing ourself to be pumped full of poison in an effort to eradicate the 'bad stuff.'

(Quick note: you notice I refer to Jill's treatment as "our" treatment, "our" oncologist, etc.  It's intentional.  I always positioned it this way.  It was one of the small, but hopefully meaningful, ways I wanted Jill to know that we shared everything on this roller coaster ride.  When she got treatment, I felt I was getting treatment as well.  We were in this together - the ups and the downs of this ride - side-by-side.)

So we're on the seventh floor, awaiting our callback, and the buzzer goes off.  This doesn't mean our table's ready.  It mean's our cocktail is ready - our chemo cocktail.  They lead us back to our 'pod' where we are grouped with approximately seven other patients in an open room, each sitting or lying in a recliner, each being pumped full of poison.

Now, these aren't all breast cancer patients.  This is a potpourri of cancer patients - bone marrow, lung, brain, etc.  And from chair to chair you can see the toll these horrific diseases have had on people's bodies.

Needless to say, our collective nerves spike upon entering the pod.

Jill plops down in the recliner.  I stand by her side.  A seasoned nurse comes to Jill, coldly asks for her name and birth date to verify the poison recipient.  "Jill Lustberg.  Seven - Fourteen - Seventy-One."  (She'll say this over and over and over again for many years.)

B/c this is Jill's first run, she has to read all of the 'potential side effects' of this chemotherapy.  Everything - minus leprosy, I think - was on that list.

Nerves climb.  Jill shows it.  I don't...ever.

They proceed to hook us up and begin what is unfortunately the best treatment option for people in this unfortunate circumstance.  It's not personal medicine.  It's mass medicine.  But, we'll get there.  I heart scientists...some more than others.

In our pod, there's a man to the left of us.  He's lying in a bed next to the massive window.  It's beautiful outside - blue skies in every direction.  We turn in his direction as he begins to sit up and slowly, slowly prepare to leave post treatment.  If memory serves, he's probably in his late fifties, early sixties.  He's alone.

His sweet eyes meet Jill's magical green eyes and he speaks, "First time?"

"Yeah..." Jill responds, concealing her fear with a friendly smile.  (She's very good at this.)

"I can tell.  I've been at this for awhile and can tell when someone's new to the process."

As he pulls on his shoes, he tells us that he's been in and out of treatment for many years, battling a different type of cancer each time.  And he says it with such ease.  What do you want for lunch today?  Maybe a turkey sandwich...whatever.  That easy...

Then he drops the line on us as he begins to shuffle past us for the door...

"Every day's a good day."

Again, he says it w/ such ease, but also w/ such great sincerity.  You can't let it escape you.

If someone had said this line to us while were pumping gas, it probably would not have the affect it did (and does) on us.  Coupled with the high emotions of that day, that line hit us hard.  So much so that we immediately began talking about it, about him, as our infusion continued.

"How can he say that?  After all he's been thru..."

"What a perspective on life this man must have to be able to utter such words...and mean them."

We never got the man's name.  And as far as I know, we never saw him again at subsequent treatments...which is odd b/c we had many, many treatments after that first round.

But, damn, did that man leave an everlasting impression on us.  We took that line and held it tight.  We remind(ed) ourselves of it when we needed to.  We shared it (along w/ the story) when we felt others needed to hear it.  We passed it on to Rory (who needs to be reminded of it w/ greater frequency these days).

Things are very difficult right now...and I know they will continue to be for a very long time.  I feel like I get punched in the gut at least two dozen times a day.  As I should; this is all still very fresh, very raw.

But, damn it, I have Jill in my heart forever.  I have Rory.  I have you.  I'm still lucky.  I'm still grateful.

Every day's a good day.

Damn right.

All love,

J, J, & r

Monday, November 24, 2014

Two of a Kind

I purchased my first new car in 2002.  This was a momentous occasion - as it is for many of us that have the ability, the luxury to make such a purchase in our lives.

A sleek, silver Honda Civic LX, 4-door sedan.  Contain yourself.

This may be the moment where some of you may be asking yourselves, "doesn't he drive a sleek, silver Honda Civic LX, 4-door sedan now?"

Yes, yes I do...w/ quite some pride, by the way.  If it ain't broke, don't give it away.  And she continues to purr like a 12-year old cat.  A few hairballs, but nothing major...

My first call after this extravagant purchase was to Jill.  I was thrilled.  She was proud of me.

Of course, I mentioned to Jilly that I needed to find a name for my new vehicle.  Or, to be more accurate, a name needed to find me.

Jill did what Jill did.  She poked at me, "A name for your car?  Why?"

"A car needs a name, Jill.  She needs a name," I explained.  I then had to explain that all vehicles require a proper name.  Had Jill been driving vehicles all of her adult life w/o giving them names?  This could have been beginning of the end of our relationship right then and there.  But, I decided to take the high road, accept her flaw, and move past it.

It was a week or so after the vehicular purchase and I remember driving south on Kirby Drive in Houston, Texas - windows down, music up (as Ro I and I often say and do).  And it hit me w/ such clarity - Moonpie.  Her name is Moonpie.

I quickly called Jilly, "Moonpie!"

"What?"

"Her name!  She's Moonpie!  Her name is Moonpie!"

Without missing a beat, as if it struck her like it did me, "That is perfect, Jas - just perfect.  Mazel Tov!"

Mazel Tov indeed.

Time passed.  Jill moved to Texas.  We moved in together.  We married.  We bought our first house.

Moonpie continued to hold her own in the Houston heat...as did Jilly's 2-door Honda (that she refused to name).  All was golden on four wheels at a time.

Then Rory showed up...and the 2-door dilemma presented itself.  As Rory grew, it became increasingly difficult to maneuver her into the backseat of Jill's car.

It was a hot and humid afternoon in Houston (pick any date on the calendar).  I was attempting to get Ro in her carseat when Jill piped in, "I think it's time for a new car."

"What?  Why?  This car isn't broken."

"Yes, but we can't get our child in the backseat."

"Yes we can," I retorted. "Just give me a second.  We'll work this out.  The car still runs.  We're good.  We're fine." I began to panic.  A part of me knew Jilly was right, but I wasn't about to trade in a perfectly good, paid-for car for something I had to spend money on.  That's just me.  I also knew I wasn't going to win this one.

Jill's CR-V joined our family in 2007.  You may be asking yourself, "don't they have a sleek, silver Honda CR-V, 4-door SUV?"  Yes, yes we still do.

The day we purchased the CR-V I asked the question, "What's her name?"

Jill responded, "Give me a few days.  It'll hit me.  It'll happen."

I completely understood.  I gave her the time and space.  You don't rush into these decisions.

And then it happened.  We had been watching a lot of Arrested Development and the CR-V's name is an homage to what we consider to be a brilliant television program - Crindy.  (It's an obscure reference to Gob's knee-jerk response to Michael's push to find out Gob's wife's name.  He spits out "Crindy," incorrectly naming his new wife.  We always laughed at this quick dialogue.)

And so it was.  Crindy and Moonpie.  Two of a kind.

And today whenever Ro and I head out of the house, Ro asks, "What's it going to be, Dad?  Crindy or Moonpie today?"  It feels good.  It feels right.

It was a good ride, Jill Marie.  Thx for playing w/ me.

All love,

J, J, & r




Sunday, November 23, 2014

IMs & Nicknames

Like many couples, Jilly and I often gave each other nicknames.  Some slipped away, some stuck, and some one just stuck out.

When we made the collective decision for Jill to retire from Wash U a couple years ago, our goal was for her to have the ability focus on herself, on her own well being.  Eat well, exercise, get together w/ friends, meditate - all the good stuff.  Some of these had a tighter grip than others.

What I didn't expect was the daily barrage of instant messages (IMs) I'd receive during my work day.

I can remember on more than one occasion where I would literally be mid sentence - mid word - in phone presentation, intently focused on a slide on my computer screen, when my "Jillschmill' IM would pop up...

"How much do you love Mrs. Landingham?  What a unique and singular character, right?"

Mrs. Landingham, of course, was President Bartlett's secretary in NBC's the West Wing.  And yes, absolutely, Mrs. Landingham was a dynamite character, adding a much needed personal dimension to the White House.  But, midway thru an important presentation (they're all important), do I need to be contemplating the merits of a fictional character created by Aaron Sorkin?  The correct answer is no.

And while these interruptions occurred more regularly than I care to admit - clearly throwing me off my presentation game for all those on the line, the quiet truth of it all is that I loved them all.

I loved them b/c they were reminders to me that Jilly was right where she wanted to be - home, comfortable, and in this case, snuggled up w/ Jed, CJ, Josh, Toby, Leo, Charlie, Sam, and Donna.  (All West Wing characters.  Come on - know this.)  And she wanted to share this joy w/ me.

Quite simple, these IMs were pop-up reminders to me that Jill was content.


The IM platform was a perfect test space for nicknames - more so for me than for Jilly.  Over the years, I tried many on to see what fit.  Jill being Jill was accepting of all most of them.   And as I noted, one in particular stuck out.

It was a brief, meaningful back-and-forth one afternoon.  Jill's at home.  I'm at work.  I type out something like, "I need to get back to it, muffin top."  ('It' being work.)

Now, I had used 'muffin top' for several weeks.  It felt good.  It sounded good.  It was - in my estimation - endearing, loving.  I mean, it was the muffin top...not the stump.  Everyone wants the top.  Let's be honest - the stump is superfluous pastry.

At any rate, Jill responds to me, "You know what muffin top means, right?"

I pick up the phone.  Jill answers cheerfully, "Yeeeeeeees?"

"Muffin top means something?"

Jill proceeds to tell me the more common - and quite rude, though admittedly clever - definition often used to describe an overweight woman.  Well, obviously to both Jill and me, I had no clue.  She knew I meant no harm w/ this nickname.  She knew I was simply ignorant (on this topic...alright, and on many others).

We decided in that 2-3 minute conversation to come up w/ another iteration of 'muffin top' that would ideally be less offensive.  We threw a few options out - said them aloud, tried them on in mock conversation, and moved on to the next option as needed.

What we landed on was gold - pure and simple gold.

Fatty McMuffin Top.

Now, wait...just wait.  On the surface, sure, this may not appear to be as harmless and loving as a nickname between best friends ought to be.  But, that's just it.  It was.  It was ours and it worked.  Why?  Very simply, it made us smile when we said it.  And not just smile; it often made us giggle.
Seriously, try it.  Find a close friend, a spouse, a family member (maybe not a coworker).  Work it into the conversation or just blurt it out w/o context.  While I can't guarantee satisfaction from both parties, I have to think you will at least crack a smile.

Fatty McMuffin Top is our relationship in a nutshell.  It's quirky, unique, unexpected, and doesn't always make much sense...but it freaking works.  It fits.  We fit.

(As I'm typing this, I'm realizing these IMs are now in my rearview.  The links to rescue dogs for sale, updates on Gilmore Girls' plot lines, and Rory's school reminders, will no longer hit my screen (...until Ro learns to IM.  No rush.)  It's a new gap, one of many that I'll (un)knowingly confront for the rest of my life.  But, I think holding onto the bright spots - the Fatty McMuffin Tops - are the pieces that will help me navigate these gaps.)

If you have your own version of Fatty McMuffin top, hold onto it.  Value it.  Don't let it go.
If you don't, find it.  It's worth it.

Fatty McMuffin Top Forever

Always,

J, J, & r


Thursday, November 20, 2014

Dumpster Tour

It originated in Houston.

Jill and I would decide to hit a movie, head to the theatre, park, and walk in.  Innocuous enough, right?  Incorrect.

It was in this short walk from car to theatre that invariably led us past a dry-heave-inducing dumpster.  Let me be clear.  It didn't matter the theatre, the parking location, or even the time of day.  That stinky son of a bitch was always present.  And Jilly didn't miss an opportunity to razz me for it.

"Taking your girlfriend out on the town and showing off the smells of the city.  Well played, Lustberg," she'd poke at me.

That's fine.  I could take it.  And apparently Jilly could, too...b/c we kept going to the movies.

And then it spread...though still w/in Houston.

If you know anything about Houston, you know that this city is not short on good eateries.  Fantastic restaurants abound.  And we hit plenty of them.  But, for whatever reason, we Jill began noticing more reeking dumpsters.  Were they following us?  Were they multiplying (w/ exponentionally excessive stench)?  Was Jill working some angle w/ the city, positioning them just so, so that she could continue to rib me for these pre dinner smells?  Whatever the reason, these suckers were everywhere...every date night.

It occurred w/ such frequency that Jill quickly coined the term "dumpster tour," as in, "Oh, I didn't know this evening out included another dumpster tour.  Bonus for me."

When we moved to St. Louis, the dumpster tour moved w/ us (along w/ other cities we hit throughout our years together).

And I don't know if it's a positive that every time I walk by a (reeking) dumpster that I'll think of my best friend.  But I do hold this memory close and share it w/ Rory b/c it is a prime example of her mommy's effortless ability to turn something stinky into smiles.


I don't know how long I'll keep this blog going, but my intent is to go indefinitely.  If something strikes me, moves me, or just generally reminds me of Jill, I may be compelled to share it w/ you.  Selfishly, it's cathartic.  But, this space also gives me us a place to share Jill memories so that she lives on w/in us all w/ rich definition.

To that end, I request all of you to share your Jilly stories w/ me, w/ Rory, thru posts (here), texts, phone, and face messages.  Say them loud.  Share them often.  She's worth it.

Rory and I have made a promise to share at least one 'Mommy memory' with one another every night.  Join us.

All love,

J, J, & r

Tuesday, November 18, 2014

CELEBRATE JILLY

This is a difficult post.

The first - and most obvious - reason being that I have to express in writing that Jill - my wife, my best friend, Rory's mommy - passed away quietly in her home on the afternoon of Wednesday, November 12.

The second difficulty here is striking the right tone.  Though she rarely gave herself the credit, Jill was gifted in her ability to clearly communicate what was always an emotionally charged topic.  This was her point of control.  She controlled the message.  She found the funny, shared it, and put on the serious sombrero when she felt the time called for it.  And you stayed engaged and supportive throughout our tumultuous journey.

The third - and potentially most difficult of the difficulties in writing this post - is expressing the impact Jilly had on me and countless others w/o sounding cliche.  And while cliches are cliches b/c they are most often true, they also have a tendency to be glossed over when read.  Jill's life is not meant to be glossed over.  It was too precious, too meaningful.  And while I can truly only speak from my personal experience as her student, boyfriend, fiancee, husband, and best friend, I've read and heard innumerable ways she has injected her brand of positivity into your lives.  Cliches be damned, here's a touch, a taste of Jill's beauty...
  • Jill's smile lit up a room.  (And if you ask me, it still does.)
  • Despite her ongoing joke that "it's all about me," Jill was as selfless as they come.  No matter her personal challenges, her first thoughts and actions were always for others.  (I recall several occasions when she'd be wiped out sideways from a treatment, opening her eyes, and letting me know we need to get that special birthday gift for so-and-so.)
  • So comfortable in her own skin, she made others feel at ease w/ her and w/ themselves, making for a very relaxed, inviting environment to build a relationship.  (It's what wooed me.)
  • As she'd be the first to tell you, Jill was funny.  (I can't tell you how many times I got soaked with water by the sink sprayer on April Fool's Day.  Pure joy for Ro and Mommy.)
  • Above all else, Jill was positive.  No matter the circumstance, if the hill got steeper, her positivity meter climbed to meet the challenge.  And here's something personal.  Never once - not one time - while on this 'roller coaster ride' did Jilly ever ask 'why me?'  She held the cards dealt her way and tried to play the best - longest - hand she could possibly play.  And she did it w/ a freaking smile.  
Jill and I made the decision to re-up our wedding vows before she passed.  In true Jilly form, she rallied.  She was not well, but the girl put on her party hat and turned it up.  Rory conducted the ceremony and kindly shared the spotlight w/ us, allowing each of us to speak from the heart.  Despite telling Jill I had nothing planned, I had been drafting a rough outline to guide me thru what was sure to be emotional vows.  Sure enough, when the time came, I missed a large chunk of my vows to Jill.  This post feels like a good place to share these vows/notes in their entirety.  It's my own blend of humor and sincerity.  They're not perfect, nor comprehensive.  But they're all heart.  

Jilly loved life.  I love her.

First & foremost, I’d like to thank the Academy for this incredible honor…

Wait...wrong speech...

I’ve actually given this a lot of thought...how we’d be up here in front of family and friends...again…

And to be honest, there isn’t a lot that hasn’t already been said between us.  B/c we’ve been thru so much over the last 10+ years - especially the last three,  we haven’t shied from expressing our feelings to one another.  

So I can certainly talk about how…

-you serve as my life compass, pointing me in the right direction w/ your wisdom.
-I’ve always admired how comfortable you are in your own skin.
-you are the most thoughtful, considerate, and loving mother to Rory.
-you get me.  You see my eccentricities and somehow appear to love me more b/c of them.
-you always always always think about others before yourself.
-you are the wind beneath my wings.  Wait, how’d that get in here?
-you are - quite simply & without question - the strongest person I know.
-you’ve made me a happy person.
But you know all of these things already.  So why dwell on them?
Thank you for being in my life, being my wife, and making this beautiful person w/ me.

I am genuinely forever grateful to be with you.  Each and every day I acknowledge this...mainly to myself.

We’ve been through a lot together over these last 10+ years.  I want more...a lot more.  And I’ll do all that I can to make that happen for the three of us.  

‘I won’t give up on us.’


Monday, November 10, 2014

F--- IT! (Revisited)

(This is Jason.  I'm drafting this note on Jill's behalf.)

Break out the Ben & Jerry's...again.  We jumped back on the hospice train last Tue.

As I type, Jill is sleeping comfortably beside me in our bedroom.  (She has been asleep all day.)  The goal - cliche as it reads - is to ensure Jilly is comfortable.  Right now she is.  

As Rory and I have discussed on countless occasions, while we had hoped science would catch up, there are no more medicines available to make Mommy better.  

So, here we are.  Propped up by the generosity, selflessness, prayers, and unwavering support of family, friends, and hospice all-stars, we carry on.  We care on.  We care for Jilly as best we can.  

How do you close a post like this?  How do you tie it up?  My guess is Jilly would have the answer...

All love,

J, J, & r
  

Friday, September 19, 2014

Lost: My Ass

LOST:  My Ass

Size 8.  Usually located on the back of my body.  Missing about two weeks now.  Please call if you've seen it recently.  Has sentimental value to me and my family.  


Tuesday, September 9, 2014

New Doc, New Plan

I'm writing this post while waiting for the "steroid phase" to wind down and the "zombie phase" to kick in.  Jason and I bet what time I would crash.  I've won!!  He bet 2:00p and I said I could make it until 3:00p, so here i am the winner, still typing.

First, I want to take a minute to acknowledge the passing of one of my colleagues from Wash U's Alumni & Development office.  Felicia passed away from cancer last night, leaving behind a family much like my own.  We are thinking about Felicia today and sending virtual hugs to her family and girls.

I had a full treatment two weeks ago, which kicked my BUTT like no other has in the last 6 years.  Granted, I am very lucky to be able to say that the worst side effect I've had is that I'm TIRED.  Typically after a treatment my crash lasts about 24-36 hours.  This round, I was exhausted many more days, and slept 10-16 hours/day depending on the day.  I can't complain much, but it would definitely be nice to see more daylight.  I got a new prescription that might help me with energy on those exhausted days.

Yesterday we saw my new doc (remember, my doc of six years moved to Houston recently).  My lab results looked good.  My blood counts (WBC, platelets, RBC, etc) looked very good.  My liver enzymes were stable from two weeks prior.  My new doc asked how I felt about possibly raising my chemo to see if we get a better response than stable.  As long as I can tolerate it, more is better to me, so we've modified our plan.

The new pattern we're going to try is instead of treatment every other week, we're going to two weeks on followed by one week off.  Before treatment this coming Monday, we'll check my labs again to see if my blood counts have recovered enough for another treatment so soon.  It may not work out, but it may,  so we will take that chance.

In the meantime, here are a couple of pics from recent family fun:


Wednesday, August 20, 2014

The Weird In-Between

We are (happily) living in a weird in-between right now.  We were planning for the end of my life to be coming in the next few weeks, and as you know, I'm a planner.  So, here's a peak at some of the things that we were in the middle of planning or dealing with when the happy news changed the direction of our planning.  This may not seem funny to everyone, but trust me, Jason and I have enjoyed more than a chuckle as we become aware of more and more things that belong on this list.
  • We spent a hefty sum on a new, adjustable bed that moves up and down, gives massages, etc.  We thought I'd be spending most of my days in bed.
  • I started giving away my jewelry to my nieces (no, you don't have to return it)!
  • I asked my parents what items of mine they wanted to keep and made sure they went home with them already.
  • We took my name off our checking account.
  • I cancelled my next dentist and eye doctor appointments.  Do you know how long it's going to take me to get back on their calendars?!
  • In a spreadsheet, I have most details of my End of Life Celebration written out.  I've assigned some friends to tasks in planning, communicating, making scrapbooks for Rory, baking desserts, etc!
  • I have a phone call to return to the city's Park's Department about the park swing we're ordering as a memorial to me.
BTW, someone has reached out and asked me if I'd write a post about how we talked with Rory about this.  I'll work on that.  I'm not a pro but I totally understand that anyone in this type of situation can use some words to try out and see if it fits their relationship with their kid(s).

Friday, August 15, 2014

Laying More Track on the Roller Coaster

Jason and I have exciting, happy news to share.  It's been a bit of a whirlwind the past few days and this has happened quickly.  We are now at the point where we are still on a roller coaster and happily are adding track to it.  Please bear with me for a long post.  I promise it's a good story.

Over the past 2-3 weeks, I've been feeling better.  I mean, better than I think I should being on hospice for 4-5 weeks now.  I called my doctor's nurse a few days ago and talked with her; I asked if I could possibly come in and get some labs drawn to see if this is a sign that, however illogical it might be, my liver numbers would have dropped enough for me to receive even a small dose of chemo.  It's tricky because hospice doesn't allow those kinds of tests, and being on hospice keeps you from being treated by your doctor.  No man's land.  So, to get this test, Jason and I had to make a few calls and arrangements.

A couple days ago, I went in and got blood drawn.  A few hours later the nurse called me and said, "Jill, I can't explain it, but your numbers look good.  Good enough to go back into treatment.  Come in tomorrow and see the doctor before he leaves for Houston." This morning, the hospice nurse came by and I officially withdrew from hospice!  (The nurse said she has done hospice for 6 years and has never withdrawn someone from hospice before because they just got BETTER!)  After that, I saw Dr. Ellis one last time, and believe it or not, after that, I had a chemo treatment again!! Some liver numbers are still very high (but have dropped in the last month), some are much much lower, and one is even back to complete normal.

When we saw Dr. Ellis, he came in with someone special for us to meet, his 11 year old daughter.  He brought her in and told her he wanted her to meet me:  "I wanted you to meet Jill because I wanted you to see that miracles can happen."  The doc and his medical dream team walked through the labs from when I was there in July the last time, a week after my last chemo.  I was SICK.  I was swollen like the Michelin Man; my bilirubin was 2.9, and 3.0 usually means complete liver failure; I was on pain medicines; I couldn't walk much without Jason holding my arm; I was exhausted and had to lay down in the waiting room waiting for my appointment.  There is no reason for them to think I wasn't in complete liver failure.

Everyone we saw couldn't explain what has now happened.  Here are two possible explanations:

A) Miracle, positive thinking, prayers, etc.

B) Scientific answer (short version):  when cancer drugs hit a tumor, it can cause what's called a flare response.  The drug starts working and causes a bunch of toxic chemical reactions, which can make a patient basically get sicker before they get better.  In the 10-12 drugs I've tried, I've NEVER
Not this kind of flair!
had a flare response.  Just not a flare girl (Flair girl, yes. Flare girl, no).  It's possible that because my liver had SO much cancer it it when we started this last chemo, there was an unexpected flare response that sent me to the verge of liver failure.  As the toxic reaction calmed down, healthy liver cells were able to regenerate and I got better.

C) A combination of both A&B.

We don't know where this will now lead us, nor how much additional time this has given me.  I'm still on pain meds.  I'm still sleeping more than the average bear and my energy isn't yet where we want it.  We continue to take it a day at a time.  I've tried almost every chemo out there, so we still have limited options if this one doesn't work.  I'll be getting chemo every two weeks, so we will still have a mystery on our hands leading up to each appointment, how ever many there are. I could be back on hospice as quickly as I was off, but the reality is that right now, I'm healthy enough to get treatment and am healthier than I was two months ago.

I believe that this turn in health, though, has definitely been propelled by every healing prayer pointed in my direction; every visit or card that has brought me laughter; every flower sent that I enjoyed seeing and smelling; every blessing cooked into food delivered to our house; every happy thought sent via text message.  From our family's hearts to yours, we can't thank you enough.  

One last piece that someone insisted I had to include in this post:  We told Rory that we had seen the doctor and had some news to share.  We told her that there was again a medicine I could try.  She clapped at the dinner table and smiled.  She asked if this meant there was even a slight chance it might all go away.  We told her probably not but we can always hope.  Her response:  "But that's ok.  We'll just take any extra days we get and enjoy them and have fun, whether we get a few extra days or a lot of extra days, right??"  I shouted, "God, I love this kid!!"

We are officially turning off the Meal Train until we should need it again.  Erin, you are an amazing friend for starting and running this thing in a way that made it helpful and easy for us.  We'll go figure out where our pans are and how to turn on the stove.  :)  And when we're not doing that, you'll find us laying as much roller coaster track as fast as we possibly can.




Saturday, August 2, 2014

"I have a few people I want to thank..."

Realizing now as I post this video that I should have gotten dressed up and stood behind a podium pretending to cry as I said this!   Hope you enjoy it anyway.


Friday, August 1, 2014

What is Hospice?

Jason and I didn't really understand what hospice was until I was enrolled in it.  I want to give you all a picture of what being on hospice looks like so far.

Once a week, a hospice nurse comes to our house to check on me.  Rather than go see my doc, I now see this nurse.  Because I'm mobile and feeling pretty darn good still, we focus on my medications: how they are affecting me, whether they are working, what side effects I'm dealing with, etc.  Any changes to how I'm feeling are discussed, sitting on my couch.  She also  takes a few vitals, and then goes home.  She's with us about 45 min/week.  There is a nurse phone number we can call 24 hours/day to get answers or help.  That's it.

I'm not house-bound.  I am up and about mot of the day and usually squeeze in one nap each day. Some days I have more energy than others, but overall I'm doing well.  My digestive system seems to be calming down and getting into a rhythm again.  For about two weeks I've been dealing with swollen legs, from above the knee to the arch of my foot.  Also swelling in my abdomen.  That was uncomfortable.  We've tried out some meds and I seem to be getting close to normal.  We've been measuring my belly based on how many months pregnant I look.  Right now I look 3-4 months pregnant, but it's been as high as 6 in recent weeks.  Down to 3 right now and feeling good about it.  Trying to get out for a 15-minute walk each day if possible.

I'm off to bed for now.  Rory leaves for sleep-away camp the day after tomorrow, for the first time.  School starts in less than two weeks.  Busy world here.

Family has been visiting and so many thoughtful, generous people have helped us out and brought things we need.  I'll do another huge post about that at some point soon.  For now, just know we are humbled, feeling love, and shoving love right out the door behind all of you!!

Love, Jill


Friday, July 18, 2014

F--- IT!

As I've said before, things can change quickly in Cancerland, and once again our trajectory has changed.  Last week my legs began to swell.  We saw the doc on Wednesday (our last time seeing him before he moves to Houston) and the news was not good.  I'm in the middle stages of liver failure.  The chemo can't keep up anymore.

There are a couple of chemos we haven't tried, but they are known to make people VERY sick, so we have decided to stop treatment.  A hospice nurse visited us yesterday and will start coming once/week until we need her more frequently.  The doc says I probably won't see the end of the summer.

Rory knows that I will die and that we aren't sure when, but that it's probably within a  couple of months.  The community of teachers from her school have already begun to surround her with support, for which I am grateful.

My mom was here visiting when we received the news, and I'll just say that even at 43 years old, there are times it's nice to be with your mommy!

We are working on some cool family memory-building projects right now.

Visitors are welcome! I'm still up and about and we would love to have time with our friends.  Please run all scheduling through Jason.  He has become the Master Planner of the family.  Earlier in the day is usually when I feel best, when I'm not sleepy.  Speaking of food, after the doctor appointment Wed, Jason came home with this pint of happiness for me.  I believe the name of this one should be called, "Fuck it!" because usually you eat it straight out of the container with a spoon while saying that!  Oh, by the way, I can now eat whatever the hell I want!  Hello, Cheese!



Overall I feel pretty well right now. I'm on continual pain meds that make me drowsy, but other than that I'm feeling pretty well.  None of you will be surprised to know that I've already laid out plans for a Celebration of Life to take place a week or two after I'm gone, rather than a funeral.  It will include food, fun, and activities for kids!

If you have questions that you think others might have too, I'll answer publicly if you post it here. Huge love to you all, and I hope to hear from you or see you very soon!

XOXO
Jill


Wednesday, July 9, 2014

We Did It!

Quick note as I'm starting chemo.  It looks like we have made tiny progress in the right direction! The four major blood work indicators show that we've slowed it down and are turning things around hopefully. Still have to take it treatment by treatment.  They are able today to give me a larger dose of chemo.  I'm so thankful and happy that I'm celebrating with fries!  Love to all!

Tuesday, July 8, 2014

Curly Q

I'd thought I'd share a couple shot of my crazy curly hair right now.  Last time I lot it all it came back in curly for a while, then quickly straightened.  Thought I'd document while I could.  I'm feeling quite hopeful that this current chemo will keep working, which means my hair will be thinning out again soon and my curls will be gone.

Happy Curly Day, all!

EDIT/UPDATE:  I thought maybe I looked a bit jaundiced in these pics and confirmed with a friend that in these pics, I do, but in person, I do not.  Just didn't want anyone to think jaundice had set it.  All good!




Friday, July 4, 2014

Slow and Steady

First, let me say a huge thanks on behalf of my whole family for all the meals, dog walks, prayers, offers, kind notes, play dates, cards and emails.  We've appreciated every one of them!

Through the week since last Wednesday I felt a little stronger every day.  Slowly I've been able to be upright more and laying down less.

When I saw the doc this past Wednesday, he said that a good gauge right now was how I was feeling. I'm still dealing with lots of tummy issues which is biggest problem day-to-day, but they are helping me try to work that out.  I am scheduled for another round of chemo next Wednesday.  Of course, blood work will be done right beforehand to be sure I can have it, but I'm taking it as a good sign so far that they put me on the schedule!

We've had a ton of family in town this past week, which has been great but also a bit tiring.  My hope today is to get a change of scenery and spend a little time laying around Jason's parents' house rather than our house.  I've had almost two weeks of nothing but our house or the doctor's office!

Thanks again for everything, everyone!  For fun, here are a few pics from my family's visit this week.






Saturday, June 28, 2014

Mr. Billy Rubin is Not My Friend

We saw the doc again on Wednesday and things have become even more serious.  My liver is under extreme stress.  We learned that some measure of your liver function called bilirubin is now playing an important part in my situation.  The more stressed your liver is, the higher your bilirubin gets.  Once your bilirubin gets to a certain number, they can't give you anymore chemo, as your liver can't handle it. Unfortunately we are getting very close to that number.  I do not like that Mr. Billy Rubin.

The original plan was that I would get a second dose of my last chemo next Wed, but the doc was afraid to wait that long, so he gave me a half dose of the chemo that was working well for me a few months ago before we took a break to try the clinical trial.  We see the doc again this Wed to see if there's any chance that was enough med to just buy us more time to take more chemo.

It's been hard for us to absorb all this, focus on one day at a time, and hold on to hope.  Yesterday we had the conversation with Rory about what happens if this medicine doesn't work.  We talked to her about the village of people who love her and are here for her to talk to.  Most of all, we told her that her job right now is to keep living the life of an 8-year-old! Go swimming, play with friends, go to camp, etc.  We're looking into professional resources for all of us, as well.

I'm home bound and I sleep a lot but otherwise meds are keeping me feeling decent. My parents are coming to town today and more family is visiting through the week.

A favor to ask... My wonderful husband is AWFUL at asking for help and is working hard to do everything himself.  If you are going to Target, or can have Ro over for a play date, or want to bring a meal, please text him and just ask when you can do these things.  If you want to come visit and maybe vacuum while you're here, I'm ok with that.  If you can take Maybe out for a 30 minute walk. If you are willing to babysit me so Jason can get out of the house. Any of these things would be helpful.  If you need his cell, text me.

I'll keep you all posted after Wednesday's appt.  Hugs and love to all!

Jill

Friday, June 20, 2014

OY

Things can change quickly in Cancerland, and they have done so again in the past few days.  As I mentioned in my last post, my last clinical trial didn't work, so we decided on a new chemo, which I started a week ago today.  In the five days after that, I had weird symptoms and even a trip to urgent care, which told us nothing.  On Wednesday I saw my doc finally and got some not-so-great news.

The cancer is growing quickly, particularly in my liver.  Because I just got some chemo, I have to wait until next Wed at least to be able to get any other treatment, so it's going to be a long week or two as we sort this out and see if the chemo is working.  I feel pretty crappy with sore bones and a swollen liver, which tires me out.  I'm horizontal more than I'm upright right now.  They gave me some morphine in case I needed it to be comfortable.  I took it once (without food, dumb me) and wound up sick for the next 12 hours!

So, for those of you who are kind enough to pray for me, a nice specific prayer would be for a "healthy and protected liver", as damage to my liver is the biggest risk right now.

If you send me notes, I promise I'm seeing them but may not always have the energy to respond right now.  Feel free to reach out to Jason, too.


Saturday, June 14, 2014

Messy, Messy, Messy

My last post described feeling a bit down.  Today, I have an explanation for it.  For those who have ever wondered why I "go dark" sometimes, not being as responsive to emails, etc, I've figured out that it's when I feel like I'm a mess.  Since around the time of that last post, I've been a bit of a mess, but hopefully I'm coming out of it now.

Why the mess?

1) Anybody out there have hypothyroidism?  It's pretty common. Basically your thyroid doesn't make enough thyroid hormone and you have to take Synthroid (synthetic thyroid hormone) to make up for what your thyroid doesn't make.  However, I'm apparently an idiot and realized right around the time I wrote that last post that I had forgotten to take my Synthroid.  For THREE MONTHS.  One thing your thyroid controls is mood and energy level, so I was one tired, bitchy lady.  I'm back on it now and hopefully should be fully regulated this week.  WOO HOO!

2)  I finished six weeks on the trial med, Palbo, and it didn't work.  I have a few new very small tumors in my liver as of scans 10 days ago, and since those scans, my spine and ribs have started to ache like crazy.  (By the way, I love you, Ibuprofen.)  Yesterday I started a new chemo so hopefully will feel much better soon.

3)  We've been in a state of unknowing the last couple weeks about what the next step would be if Palbo didn't work.  We were looking into clinical trials all over the country.  I was even signed up for two different ones and then they didn't work out.  I like having a plan, and that state of planlessness was weighing on me.

This past week, though, I had a great distraction from the planlessness.  We took a vacation to Michigan, where we chilled out, rented a house, and sat on a (sometimes chilly) beach.  My brother and dad came up for a couple of days to join us, and it was great!  Plus, our lovely friends Rebecca and Bobby let us steal their kiddo for 6 days, so Rory had a friend with her, which was AWESOME for everyone.  For those with an only child, I highly recommend renting a friend.  Text me for Rebecca's number and maybe she'll cut you a deal on renting Vivian!

A few pics  from our lovely week: