Hi Ho, Hi Ho, it's off to Surgery I go...

Today's the day I say goodbye to my gall bladder.

It's a body part I have spent my entire life paying scant little attention to.  Until recently, of course, when it has caused me a world of trouble.  Mine is full of stones, swollen and tender, so out it comes.

Today.

As you read this I may even be unconscious, under the knife.

Wait, how can I blog while heavily sedated?

Through the magic of 3 AM insomnia-fueled writing and post scheduling, of course.  Because for the few days leading up to my surgery I am a whirling dervish of planning and prepping, trying to ensure my household, and most especially my children's lives, runs as smoothly as possible with me under the weather, out of the picture.

I have been assured that now that it's done laparoscopically, a gall bladder removal (officially called a "cholecystectomy") is a cake walk, a big fat nothing of a surgery.

But still, for me?  Who has only ever been a hospital patient for my childrens' birth via c-section?  It's a big deal.

Last time I had surgery it was to gain something, to become something more, greater.  I had children, I became a Mom.

This time it is to lose a piece of me that I came into this world with, an internal organ, nestled up close to my heart.  On the right side instead of left, but still, it's one of those "vital organs" smack dab in the middle of my body and mightily protected by my bony rib cage.  I will walk out of the hospital lesser, lighter, without a part of me, incomplete.

And I know I am taking this a bit seriously, a bit metaphorically, but it also rings true.  I am likely to spend a small amount of time in mourning for my gall bladder, oh, tiny organ of ill repute.

It's just one of those organs with funny names (I mean "gall bladder"? Really?)  No non-medically oriented person knows what the heck it does, until it stops doing its job properly.  Then you know.  Oh boy, do you know.

I will, of course, not dwell too long upon my loss because life will barely be paused, giving me little time for rumination.  My children will still need to be woken up, fed, clothed, cleansed, organized,  shuttled to and from school, played with and play-dated, homework-supervised, kissed and put to bed.

And though the physical side of these tasks will be fobbed off to others for a few days while my body recovers the assault inflicted upon it, my expertise will still be constantly called upon.  I am the one who is large and in charge in our house, the general in command of all things child.

And while Ethan does not like what is happening to his mom, he understands it, will go along with the program: demand less, help more, gentle his physical love for me.

Jacob on the other hand, thanks to autism, is likely to be confused, feel terribly rejected by his mother's arms length embraces.  My unavailability will weigh heavily upon him, I who am nearly always the one who is there with and for him, every day in every way.

I will try to throw up a simple update sometime within a day of my surgery, but don't expect posts relevant to current events for about a week, post surgery.  I may end up surprising myself, but I wouldn't count on it.
 
I am guessing I will have precious little energy and focus for writing, so although I have prepared a few posts to pop up like this one, seeming fresh made, they are actually mostly pre-fab.  I don't want my blog space to remain blank for too long. 

And if I am deficient in my commenting on your blog and responding to comments on my own?  I'm sure you'll understand.

I will, likely, be sleeping, reading and attempting to move about tenderly.  Air hugging my children.  Running the ship from the sofa.

I will be doing my best imitation of a lox, more still than I have been in the eight and a half years since the boys popped out and my current hurricane life began.  I may even catch up on my sleep.  (One can always hope.)

Wish me luck!

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I've Got Stones

Gall Stones, that is.

What?  You thought I was talking about my Mom-balls again?

Yeah, I've got those, too.  Just try to take away a vital service from my autistic son, Jacob.  Mess with him and you will see my giant huevos come out, big time.

I mean, even though my *actual* eggs are kind of over-cooked at this point (see my last post), my metaphorical ones?  My "don't mess with my family" ones?

Outsize and ready for action.

But about that other thing?  Yeah, I'd really like to pretend this isn't happening.

But doubling over in slicing, cramped pain and then making a mad dash to the women's room to gag and dry heave for 10 minutes during my son's basketball practice on Saturday sorta makes that impossible.

I cannot say enough about how happy I am to have the good fortune to have actual medical professionals in my family, both natal and the machatunim.  (That's Yiddish for the whole {damned} family you marry into - you know, the in-laws.)

I had already self diagnosed via the friendly internet on Saturday night.  When I was finally able to stop moaning and sit upright, that is.

But you know?  The internet?  Scary place to do medical research.  Reminds me of that old Nicole Hollander cartoon, the one where Sylvia is reading a book called "Infectious Diseases."  As her daughter warns her to put the book down, she yells out "Oh my god, I've got anthrax!"

In spite of the chance to just completely terrify myself, I kept a mostly level head.

But the problem with hot-knife style searing pain of mind bending proportions in the area of one's major organs?  Hard to believe it's no biggie, not connected to a serious condition requiring immediate medical attention.

But a nice chat with my lovely ER doc cousin, Jessie, in Vermont reassured me that had I come into her ER, she would have been all "Crap! Why is this person in my ER?  It's just a gall bladder attack, nothing dangerous. I had to wake up from my nap for THIS?" (She often works the overnight shift.)

She told me to see my doctor on Monday, went over the warning signs that should send me rushing to the ER for real, and gave me advice for how to get myself comfortable in the meantime (antacid, Tylenol, rest, duh).

And the next day I felt mostly better, which was a mighty good thing, it being the Sunday of my husband's family's annual Big Chanukkah Party.  (I know, not technically Chanukkah anymore.  But?  Shhhhhhh.  It was so early this year.)

What?  You want to see pictures of that?  OK here's a few:

Lighting Grandma Blanche's menorah

Presents Galore!

Grandma Sylvia got a zhu zhu pet

And at this bash?  Yes, indeed, I sidled up to Danny's cousin who happens to be a G.I. with that "you are about to be cornered by a relative with a medical question" look on my face, and he did not back off and disappear, which I took to be the go-ahead sign.  (If you're confused here?  Folks, we're Jewish.  To us "G.I." is short for Gastro-Intestinal as in a doctor's specialist degree, NOT Government Issue as in "G.I. Joe".  Please!)

So I asked cousin David, "Do you do Gall Bladder?"  And he gestured for me to continue.

I described my symptoms, and when I got to the part about the pain finally localizing in the upper right quadrant of my abdomen and then radiating to my back under my shoulder blade, he nodded.  Then he poked at a spot and I yelped and he said to call his office at 8:30 the next morning and they'd get me in right away.

Oh yes, I married into the right family!

So all this is how, yesterday, I came to have my first complete and thorough physical exam in... maybe 10 years?

The problem with being essentially healthy and taking care of multiple elderly parents and young kids with all sorts of issues is that you can neglect your own health big time.  (I *might* have done that.)

Until there's a big wake-up call.  Like, oh, feeling like you're being sliced in half by a ninja out of the clear blue at 2:45 on a Saturday afternoon while your autistic son is attempting to play basketball.

What?  You want to know how the basketball is going?

Yes, I did share my excitement about it, and planned to report back right away.   But life got... busy, you know?

Briefly: it's going well-ish.  (A full post account is coming up soon, I sort-of promise.)  Here, look at some cute pictures (sorry about the odd color, there's weird yellow lights in that gym):

One excited boy

Playing basketball, sort of

So, back to my foray into all things medical yesterday... having been a basically healthy person for 50 years (and believe me, I know how blessedly lucky I am about this, am grateful & do not take it for granted) my experience with medical procedures has been mostly on the sidelines.

Let me tell you, there was a more than slightly surreal quality to be personally undergoing the same diagnostic procedures that I had sat through countless times as the support person for a parent or friend.

Like deja-vu with a side-step.  Like in those dreams when your point of view flashes back and forth between a first and third person perspective, leaving you wondering if you are watching or experiencing the events at hand.

To be the one in the ugly, ill-fitting gown on the table myself?  Very, very weird.

What?  You want pictures of that, too?  Well, here's me waiting for someone to come into the room and do something to me:  

Beige is so NOT my color

So I've now had my first echocardiogram, folks.  And you young people with healthy hearts who have never had to care for someone with cardiac troubles will not get what a big deal this is.  But if you're on my side of the fence, you will understand the thrill, and why I'm bragging:

My ejection fraction?  Was terrific.  (The "ejection fraction" is a measurement of the heart's efficiency at pumping blood, and is severely compromised in Aortic Stenosis, the condition that did my father in.)

I jumped with joy.  (Well, I would have if I weren't laying on a table covered in yucky ultrasound goop.) 

Considering that I am essentially allergic to exercise?   I have no right to have a heart as healthy as mine appears to be.  And I am NOT going to take this for granted.  I am going to thank my lucky stars and work from here on outward to not let this good start turn sour through inactivity and complacency.

I am a 50 year old with young children. I need to do all I can to ensure I am here to care for them through their formative years, to do all that is within my power to not abandon them too young.  (Please hold me to this.  Yell at me if I don't start to take better care of myself in the future.)

I am guessing I have my love of dancing to thank for the positive state of things.  Those years of my late teens through mid-twenties when I went out dancing with wild abandon two or three nights a week.

And the way I danced?  Way aerobic.  I would work up quite a sweat.  Hell, I would often sweat completely through and thoroughly soak my clothes.   Looking back it's a wonder anyone ever dared go home with me afterward, sweatball that I was.

Although it must have helped that, as an old boyfriend put it, I "danced like a girl who likes to fuck."  Ahem.  Guess I wasn't afraid to move my hips.

Sigh.  It's nice thinking about a time when my body was more about pleasure than pain.

But getting back to the icky medical stuff.  I ended my day at the imaging center I had taken my father to many a time before.  Once again, the odd disconnect of shifted perspective.

"You've been a patient here before?"  The receptionist asked the question as a not-question, rhetorical. Clearly I looked familiar.  She thought I was a returner, a repeat customer.

"No" I answer.  Then, because she has raised her eyebrow sceptically I start to question it myself.  "I don't think so..." I stammeringly add, "I've been here so many times, but I'm pretty sure that it was always to bring my father in."

"Well, let's check, then" she says, inputting my statistics into the computer, which spits back... nothing. First timer.  Fill out the thousand forms and bring back the clipboard.

The technician is friendly, chatty, and I don't mind.  Gowned and gelled yet again, I am lying on the table when she swings the monitor around to show me: a solid white almond shaped nugget in the black hole that is my ultrasound gall bladder.  "Stone" she says.

Well, at least I wasn't imagining things.

"Is it a big one?" I ask, watching this thing taking up a good quarter of my gall bladder float around like an jumbo olive in a small martini glass.

"Oh, yeah, I would say that. The good thing is, it's too big to pass through the duct."

"That's a good thing?"

"Yeah, better than the granules, they really hurt going through."

OK, I'm happy to just take her word on that.

So now we wait on the blood-work, schedule another test in a few days (they're going to make my blood a teensy bit radioactive), and then?   Review the findings and evaluate my options.

Apparently, wave a magic wand and make it all go away?  Not among them.  Damn!

I may have a date with a laproscopic surgeon in my near future.  We may wait and see.

And if I do end up having my Gall Bladder removed?  Here's to hoping the guy doing it looks just like Weird Al Yankovic in his classic "Like a Surgeon" video.

Because I want to go under the knife laughing.

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What’s the word?

My father has lost his words.  They have fallen out of his brain, all meaning sifted out.  Left is the dross, the building blocks of words stripped of their meanings, sounds, almost words: Ginnnggg, wishta washtra waaah, burnfurgr shtupf, gaaaaaaah!.  My father sounds like a gibbering demented old man because he is a gibbering demented old man.

And it’s the truly, fully, saddest thing in the world to watch my once intellectual, eloquent, full of ten dollar words father unable to tell us that he is in pain.  We have to look for the signs: his body tense and guarded, shifting around on the bed un-restful, his eyes weepy, his voice burred, the tone of his proto-words pleading. Then, yesterday, finally able to dredge around in his mind to find one true word: “Help!”

And yes, now it’s a lot like caring for a pre-verbal infant.  A while ago, after my father’s first big collapse, on December 17th, 2007 our family’s personal day of infamy, when he fell apart in my apartment, unable to breathe, drowning in heart failure, and 911 came in the nick of time, he had a rather awful hospitalization.

This was the day of my parents move back to Manhattan from the wilds of Riverdale.  Six blocks from my house, so I could keep a closer eye on them, so they could have a grocery store and diner and drug store mere feet from their front door, no longer confined to manicured grounds, dependent upon the whims of occasional aides and cabdrivers or the available time of their daughter to venture into the world. 

What I had not calculated was that the ambulance would feel it necessary to bring my father to the closest hospital where he had no connections.  All my father’s doctors at that time were still up North, but I was told that even though the EMTs had stabilized him with lasix and nitro, time was of the essence. 

If I had had a moment to think things through I would have pointed out that Mt. Sinai was really just as close, as the trip through Central Park is such a quick one, but I was clearly not thinking clearly, in the rush of my first brush with “oh, my God my Dad just almost died”.

And while they might have decent cardiac care in the ER, the ward my father was put into was just terrible.  Since he was stable, he did not go into the ICU, and because of his age, he was placed on a geriatric unit, where the nurses really didn’t give two shits and didn’t want to be bothered with an angry old man in pain.

So when the narcotic pain killers they gave him caused him terrible constipation and they just didn’t care, when they handed me a pair of gloves and told me they wouldn’t be able to get around to removing his impacted stool until some time tomorrow but I could have a go at it if I wished, what could I do but dig in.

This was my first bout with cringe inducing, dignity stripping physical care of my father and it was a doozy.  My big revelation after that was that while cleaning the poop off your baby’s bottom is a loving act full of joy and promise, cleaning the poop out of your father’s bottom is a loving act full of sorrow and pain.

So my father is in a post-verbal state, which is like and so unlike my children when they were pre-verbal; situationally parallel, but oh so emotionally disparate.  You always remember your developing child’s first words, but what about your deteriorating parent’s last?   How can you know that you’ve heard it, and that there truly are    no             more             words                           to                                            come?

When Jacob was a little babe, he had all the earmarks of becoming a language learner: he cooed, he babbled, he goo-gooed on time, he could and would mimic words with perfect diction. One time he reached up to grab my hand while I was changing him; “Careful” I said and he repeated it back to me, clear as a bell.  But then it didn’t happen, he froze there, he wasn’t talking.

As he got older and the specificity of his issues were becoming apparent, I realized how un-hooked speech is from language.  Language in all its human-making glory, requires communicative intent and Jacob had absolutely none. 

As time went on he could label like a champ. Hold up a cup he said "cup", show him a running faucet and he said "water', but when he was thirsty he would just cry and cry.  The parts of his brain that needed to engage to know that these wordy things could be used to communicate his needs, his wants, his feelings; those connections just hadn’t been made yet.  The first time Jake made a request, found words to be of use and not just a neat parlor trick for labeling stuff, I cried and cried in relief.

Ask anyone what makes us human, what separates us from our animal cousins, and one of the first things they’ll say is language, the ability to communicate thoughts and feelings.  As we learn more about animal communication and how they sometimes can do even that, the distinction is often further refined, drawing the human line at the concepts of abstraction and self reflection, our ability to ponder and pronounce upon the parameters of our existence.  All this, my son Jacob eventually gained, and my father has now lost. 

However, this is all such a simplification, since my father, though stripped of his ability to communicate through words, though un-moored in time and space, is still quite thoroughly human.  Those of us who have known and loved him when he was still who he was, can still see the Jim in him.

This is why we have struggled so hard to keep him home, with support from caregivers who knew him when.  If we were to put him in a nursing home, all they would see, all they would know is the gibbering demented old man he has become, and it is much harder to give loving care when that’s all there is.

My sister Lois, who works in the field of elder care, has said that Dad is not ready to die yet, because he is still processing something, even though we can’t know exactly what.  We have to trust that he’s there in his brain somewhere, doing just that, the final work of his life, getting ready to go. 

I also think of all the non-verbal Autistic children, communicating through their behaviors, communing with the infinitesimal and the infinite that we, too busy, often overlook.  These children whose loving parents know how fully human they are, who hold unknown universes inside themselves, are so often treated so shabbily by the world, cast off because they have no words to trade. 

I think how thin the line is between Jacob and his non-verbal brethren; I think about the time before words, when we did not know if they would ever come, if he would ever understand us, or live “self directed” for the rest of his life.

It’s called the autism spectrum because it stretches so far across many sometime divides, and connects us all.  As parents of children on the spectrum our hearts stretch, too, take us to places we never imagined, never needed to imagine in the time before.

And so I go about my daily life. I pick Ethan up at school, try to look like I understand as he proudly shares his latest Pokemon conquests.  I gently correct Jacob yet again when he calls the female cat “he”.  I hold my father’s hand as he mumbles and raves.

I sit down to write about it all, using words like tiny lifesavers, keeping myself afloat, here in the choppy waters of my little pond, my wavelength of the spectrum, my slice of life.

Who needs toes, anyway?

For those who like gory medical details, you’re going to love this post; for those of you who waft toward the squeamish or are reading during lunch, I suggest you skip this one for now.

My father, at nearly 93, has the constitution of an ox… a team of oxen… no, make that a whole herd.  That old warhorse of a saying “whatever does not kill me makes me stronger” has suddenly taken on new and wondrous meanings with my Dad.  Take his toes, for instance - you might as well, since he’s losing them soon, anyway. 

The thing that started this whole last, latest, probably final crisis was the perfect storm of peripheral vascular disease and diabetically compromised circulation, combined with his critically severe aortic stenosis, which is officially his “terminal condition.” 

Due to all this, last October, he developed an infection in his left big toe.  This led to a toenail removal (gruesome, don’t ask) and a foot that seemed to be slowly healing, but then stopped and went the other way.  There was an anemic collapse and hospitalization right after Thanksgiving, then the discovery in early December that he had practically no blood entering his left foot at all. 

In order to save his foot, and therefore his life (since he could hardly survive an amputation), the vascular surgeon recommended an operation to open up the arteries in his left leg.  Four and a half hours into the two-hour operation, things went very, very wrong; pear shaped, to quote my Anglo/Australian friends (I love that expression, even though it also describes my body). 

To make a very long story a little shorter, he came home from the hospital much weaker and his circulation barely improved.  His toe was bad and getting worse, the problem spreading across and up his foot, too. This is when we were told to expect him to have days, maybe a week to live. 

Family flew and drove in, good-byes were said, his liver swelled up, his color faded, and then… he got better… again. 

His toes continued to die, due to lack of circulation, but to our utter amazement, they went into a state we had no idea existed: “dry necrosis”.  Instead of the pattern I had been walked through and prepared for: tissue death, infection, gangrene, sepsis, death (of which I have since learned is officially called “wet necrosis”), his body wisely chose the dry variety. 

So the toes on my father’s left foot are slowly turning black and becoming hard and dry, literally mummifying themselves while still attached to his foot.  For now.  If things progress accordingly, his toes will eventually become as hard as wood, then snap off, his body performing its own, non-traumatic amputation of non-essential, non-living tissue. 

How completely weird and weirdly wonderful is that?  His formerly swollen foot is now back to normal, and only reddened half way up. He is not in pain because the nerve cells have died, too. 

He is an ox, a whole team of oxen.  I should like to have his genes … oh, wait, I do!