10/31/2012: Catching up

Happy Halloween!!!

I can not remember being so excited about Halloween since I was like 8.  I didn't think I'd ever care about this "holiday" again.  So totally was not expecting this.  All I know is I can't wait to get home to the boys tonight and get them dressed up and out and about.  They are obviously way too young for candy and trick or treating, so we're really just dressing them up and taking them to visit a few neighbors and won't be collecting any candy.  But I know they'll love the spectacle that our street becomes and I don't want to keep them cooped up in our house all evening.

Our street somehow became known as one of those streets that gives out good candy - and we're not stingy, either.  So people from neighborhoods all around drive in to wander our street.  Our street is actually a loop that wraps around a little lake.  Last year we had so many kids it was insane!  Dad's with their trucks put trailers on and bales of hay to make it like a hayride and they just drive all around the loop.  It was almost like a parade of hayrides last year.  Then tons of kids walking or being pulled in wagons.  We never have enough candy.  I think we've always been too scared to buy enough knowing what happens with what doesn't get handed out.

We aren't sure how we want to hand out candy tonight for the portion of this that we are out and about for.  I know we'll get home before trick or treating is over.  We have 4, maybe 5, neighbors we want to visit and then we'll call it a night.  But for that span we are out, the thinking is to put the bowl of candy out next to the jack o'lantern and expect people to be honorable.  Our other alternative is to put a sign up saying candy bowl is at neighbor's located in direction whatever.  I guess a third option is to leave the light off and just not hand out candy until we get home.  But that seems so unfun.

Anywho...moving on.  Yesterday I read a few blogs back.  I specifically read "Past Due" which is a blog catching everyone up on how the surgery went as well as post-op check-ups.  In reading that, I realized there's a few new catch ups to that.

So, to start with, I'm not pain free.  But I am in so much less pain than I was that it's nearly like pain free to me.  At first, when the pain started to come back, I thought, I'd just keep it to myself because I'm tired of always talking about my pain.  But as time has gone on, I'm changing my mind about that.  I'm not going to declare I'm pain free when I'm not and then never talk about what this disease is really doing to me.  Instead, I am going to declare I am not pain free but the pain is all kinds of livable at the moment.  I am also going to declare that it's different this time.  Because it is.  When I was diagnosed with endo, I had no idea what I was in store for.  I had no idea the pain that was coming or how it would progress.  I honestly thought I'd have painful cramps with my period - like I've always had - and that I'd be ok for the rest of the month.  As you know, that's not what happened.  This time, I know what's coming.  So I have a very different mindset.  VERY different.  Incredibly VERY different.  So this time, I'm going to help fight the pain with simple awareness.  A very basic idea of mind over matter, to a degree.

Now, mind over matter isn't getting me out of pain.  But...if I were to compare this to where I was post-op after my first lap for this, it's a world of difference.

For a few weeks I thought I mighta coulda moved into the pain free realm.  I completely stopped the pain meds.  I was scared to death that I had been on them so long that I was going to be physically dependent - and fortunately, I was not!  I had nearly a week with no pain meds.  No tylenol, no motrin, and definitely no narcotics.  I was thrilled!

And then the pain came back.  I tried tylenol.  Nothing.  I tried motrin.  Nothing.  I tried combos of both.  Nothing.  And  now I'm back on tramadol.  But here's the thing.  I'm allowed to take up to 8 a day.  I've not had to take 8 a day even once.  It's recommended that I take no more than 5 a day.  I've had 2 days where I've needed 5.  I've also had 2 days where I've needed none.  And most days I've been fine with between 1-2.  1-2 tramadols a day is nothing compared to what I was on before surgery.  And the difference - mind over matter.  That's what I believe.

Before surgery I wanted to be pain free.  I wanted to scream no fair.  I wanted to not be doing this.  I guess now I'm resigned.  This is meant to be my life and to fight it is to waste energy that can be better utilized in other ways.  To go with it means more energy for the things that matter - my beautifuls, my Husby.

I mentioned in that blog I refer to above that I might have relief for 6 months and it might be 2 years.  We were all hoping for 2 years.  It's looking like I'm in the camp of 6 months.  But maybe mind over matter can have a better result.

In addition to that - when I went to see my ob/gyn about getting on depo, he said fine, if that's what you want, I'll give you the prescription, you can go get it and come back and we'll give you the shot.  But.  It won't work.  He went on to say he'd never seen endo so aggressive and so fast growing.  He said what was done in that surgery was crazy intense.  You know - more like how I felt about that surgery.  Doc-specialist said something more to the effect of "it was nothing".  But then...he sees the worst of the worst.  I hadn't gotten so far along with this that I fell in that category.  So maybe I don't want to be in the 2 year camp?

Ob/gyn went on to say I need to get pregnant.  I'm not getting younger, obviously.  But add to that, my risks of miscarriage and ectopic pregnancies are now through the roof - based on what doc-specialist discovered in surgery.  The older I get, the longer I wait, the more endo that has come back - the worse those risks are. I had a D&C as part of that surgery and so with all this fresh tissue in there, I need to take advantage of that and get pregnant.  He said with Husby's cancer and my risks, we need to do this before he does the radioactive iodine so that faulty sperm aren't something we might have to contend with, too.  Husby does have the option of delaying that treatment for quite a good while.  But it's still hard to stomach - hold off cancer treatment to get pregnant.  Just seems weird.

Ob/gyn finished with - getting on depo isn't much likely to do anything for my pain.  He said my endo doesn't seem to be hormone driven but rather immune system driven.  So depo won't stop it.  Removing it for good may not even stop it.  Some women don't get relief with a hysterectomy.  I may well be one of those, now.

Going on...I went back to see pain doc eventually, too.  I caught him up on everything.  He actually is recommending against pregnancy these days.  Said if we are that adamant we want a biological child we might want to consider egg retrievals and sperm freezing and surrogates.  That maybe I should just go ahead with the hysterectomy.  His fear is that I will have pain all through a pregnancy.  And then I'm faced with the choice of whether to use meds while pregnant to deal with the pain.  I would not.  Nothing over tylenol - and I'd personally choose nothing at all!  When I told him that, that's when he said maybe a pregnancy isn't a good idea.

Husby and I talked - and we talked again - and then we talked again - and we continue to talk.  I ultimately said this:
"I am putting my trust in God.  God knows what I need, knows what I can handle.  If it's a pregnancy, then there we go.  If it's a painful pregnancy, then there we go.  If it's no pregnancy, if it's ectopic pregnancies, if it's miscarriages, whatever it is, God has a plan for me."

That might sound nuts.  But it's just as simple as this.  It's what I feel.

Through my 20's, I fought God.  I wanted to believe it was all my doing.  That I got myself where I wanted and/or needed to go.  By the end of my 20's, I was nowhere near where I thought I'd be.  I'd been through things no one should go through ever, let alone in their 20's when faced with all the turmoil of the 20's.  As my 30's have progressed, I've trusted in God more and more.  And with that developing trust is an insane peace.  God takes care of me.  He gives me what I need.  Maybe not what I want, but definitely what I need.  Maybe I'm supposed to have another set of twins.  Or a girl.  Or twin girls.  Or no more.  Only time will tell.

What Husby and I can do is put the limit on what we want to do.  In our case - how long we're willing to try.  We have 2 cycles before we find out what's going on with Husby - another surgery or not.  We see his doc 11/29 to get those answers.  We will talk to her then about putting things off for the sake of trying.  If she says no, there we go.  If she says yes, but for 6 months, no more, there we go.  We shall see.  For ourselves, we say no more than 6 months.  If we're not pregnant then - we're not going to have any more kids.

Whatever will be will be.

Resignation.

I'm not fighting the journey of endo this time.  I'm not fighting God.  I'm not fighting.  I am going to trust.  Because when I have trusted - I've "gotten" beautiful "things" like my Husby and my beautifuls.  When I have not trusted I have been raped and left alone on a planet where all we want is to be a part of a family.

Maybe it sounds nuts to you.  But to me it sounds like peace.  And it's my life - and I like peace.  So there we go.

So there's some updates for you.  I'm sure there'll be more along the way, but my focus is different now.  And maybe that's the best thing that could happen!

Happy Halloween, y'all!  Have a safe one - and for those affected by Sandy, I hope that Halloween isn't postponed for too long.

10/29/2012: Back to work....

Yep.  I'm back.  After five weeks off.  I am happy to be back.  But I am super sad to be gone from my boys.  We were well into a routine and it was nice.  Very very nice.  One year olds are hard - they are non-stop and need constant stimulation.  But they are also SOOOO SOOOO SOOOO much fun.  Especially when a good routine is in place.  My guys are talkers and movers and so ridiculously lively it's just FUN.  The daycare was VERY happy to have them back.  They say "it's boring without them".  They just brighten whatever room they are in - they are those kind of kids.  Both of them.  Not just one.  People always expect one to be the lively, outgoing, gregarious one and the other to be the shy, reserved one - but no, they are both lively, outgoing, gregarious types.  In different ways.  Which just makes it more fun.  Anywho, so this morning, there we were dropping them off.  There is another little girl in that same room that is one day younger than them.  Oh how her face lit up this morning when she saw my guys.  It was amazing.  I've never seen her face light up.  I thought she didn't much care - about anything.  But this morning, she happened to be in one of the "teacher's" arms as we walked in and she was about to jump out of those arms.  She was in an all-out-extension to reach out to my guys.  Her face lit up.  She kept looking back and forth from the one I had in my arms to the one Husby had in his arms.  We put our boys down and took their cute little leather jackets off and she had to be on the floor to show them around, too.  Green ran around to all the cribs holding sleeping babies and stood up at each one to see who was in there.  Blue went straight to playing.  And that little girl was right beside Blue yet watching Green to see what was up there, too.  The teachers throughout the building all ran in at various points, one by one, so they could thank us for bringing "their" twins back.

I know how they feel.  I love my guys.  I want them with me, too.  They do brighten the room.  No doubt about it.

Here's something impressive.  Blue did not take a nap yesterday.  We went to the zoo and he simply would not fall asleep.  Green did.  Blue wouldn't - not in the hour long car trip each way, not in the stroller wandering around, just not at all.  Too intent on people watching.  And yet, here's this one year old boy, with no nap - and who even went later than normal for dinner - and he never got cranky.  He just kept on smiling.

I guess I am starting to see why people are always befuddled that I'm constantly in pain.  Cause outwardly - I'm still pretty happy.  Husby is fighting cancer.  Yet outwardly, he's still pretty happy.  We just take our kicks and kick right back.  I always worry that people see my anguish.  But people tell me they don't.  And here are my two beautifuls...always shining.  I love it.  People tell us All.  The.  Time..."they're just like their mommy and daddy".  I want them to only have our positive personality traits and never our negatives.  Can we make that work?

Anywho.  Moving on.  Rest'll be bullets.  We'll see if I can keep 'em more conciselier than normal.  (Like my word?)

• I'm back at work today.  Turns out - work is slow now.  So I'ma have lots of time to work on my project that is the only thing standing between me and a promotion and a VERY sizable raise.  I like sizable raises.  I want one.
• Blue and Green had their one year check-ups on Fri 10/20.  They do not show any notion of having been preemies at this point.  Head size, height and weight all well above 50th percentile.  Our ped wasn't worried at their 9 month check-up because they were well into normal territory then.  But now, they are "ahead".  I'd expect that "aheadness" to pick up even more steam.  I am 5'7".  I have been 5'7" since I was 11.  I was always super tall growing up, towered over my class mates.  Always got in trouble because people thought I was older because I was so tall.  I have a cousin who is 15 right now.  He is 6'4".  He played rugby up until about two years ago and always had to be in the older age group because he was so much bigger than anyone else his age.  Husby hopes our guys get my height gene but his muscularity.  While my family is known for height - and growing fast, they are also usually pretty lanky.  Except me.  I got my mom's side's height but my dad's side's muscularity, too.  So I'm hoping that between me and Husby both having that muscularity, hopefully that'll work out well for our boys.  
• Endo news...the week following the beautifuls birthday party I was in horrible pain.  Enough so that my doc wanted me off work an additional week.  At the start of last week (i.e. one week ago today) I was in horrible pain.  By Friday, however, the pain was subsiding.  So much so, I didn't even notice.  All I noticed, really, was that instead of taking 4 pain pills each day, I was taking 1, maybe 2.  Over the weekend - one day, none.  Another day, only one.  Today...haven't needed any.  I know the beautifuls' birthday party took a lot out of me between all the prep and then the party and then the clean-up on top of guests and running like a cheetah all over heck and gone.  I also now know that additional week off really seems to have made a difference. I suspect that my doc was right, going back to work last week, as originally planned, woulda set me up for never getting control back.  I have so much control now - it's like I'm not in pain.  

WOOOHOOOO!!!!!

• We took Blue and Green to the zoo yesterday.  It was absolutely gorgeous in Houston all weekend and I wanted to be outside.  They didn't pay much attention to anything animal related, of course.  But they definitely had fun.  As we were leaving we wanted to go by the elephant exhibit.  If there was anything I'd want Blue and Green to pay attention to, it would have been the ephalants.  And they did.  Boy did they.  They ephalants were already inside their huge "barn" for the night so we saw them through huge windows.  And we saw close-up a mommy and baby combo.  Blue and Green's eyes were fixated on the ginormity.  Blue, who loves to reach out for everyone right now, was reaching out to that momma ephalant like she'd turn around and scoop him up.  It was so awesome!  I love me some ephalants.  I didn't always, either.  It wasn't until I went on my world cruise and realized how cherished they are throughout the world and started to really learn of their amazingness that I started to change my mind.  
• The leather jackets I bought the boys?  Part of three piece ensembles with jeans and long sleeved t-shirts...yeah...made completely of polyester.  They are so awesome!!  I shoulda taken pics this morning.  They are so adorable!  Especially on the boys.
• Speaking of pics, I absolutely CAN NOT wait to get them in their Halloween costumes and get pics of that.  I think y'all will love them.  I think it's funny what I am dressing them as.  I can't wait to share the "surprise".
• Ok...time to get back to work.  Get things moving.  Do stuff.  Now that I'm back here...I'll probably be blogging more.  I've found that it's really hard to blog and play with beautifuls at the same time.  :)

Have a great week, y'all!!

10/17/2012: Heppeh heppeh heppeh

Think Phil from Duck Dynasty.  I love how he says "happy happy happy".  How do you spell that?  I know I didn't get it right...

Today - all one hour left of it - is Blue and Green's First Birthday.  What a year this has been.

My boys are amazing.  It's amazing to me how many people tell us that.  And it's not because they are super smart or super amazing or super astute or super quick or anything like that.  No, they aren't ahead of the curve in weight, height, walking, talking or anything.  They are normal, fun, cute baby boys.  So how are they amazing?  Because they are soooo intent on staring into your eyes.  They want to see who you are.  They want to see how you see them.  Blue, when you pick him up, he will look deep into your eyes.  It's like he checks to see if you're a happy type of person or not.  And once he gets a good look, he adapts to what he thinks you'll tolerate from him.  Green, a little different.  He will look deep into your eyes, too, but then he tells a joke, in his little bah-bah-bah chatter.  And he WILL make you laugh.  These two are comedy.  How they interact with each other, how they interact with you, how they interact with me.  Anyone that has spent more than five minutes with them will tell us that it's easy to see how so many miss them when they don't get to spend days with them because they just captivate you and entertain you and keep you intrigued.  It's simply amazing.

In the last year, Blue has evolved in multiple ways.  Around 4 months he decided I was the reason for living. He was beyond smitten with me and it melted my heart.  The way he sought me out, would smile just because I looked at him...I was beyond hooked.  Beyond - because I've been hooked since I knew he was in the womb!  Who he is today, one year later....

• He is our public relations guy.  He will talk to you and get you up to speed on the state of the house.  He will continue to talk to you as long as you'll listen - and if you stop listening, he's probably still going to talk, too.  It's so much fun to listen to him sorting out all the various vowels and consonants and ways to mix and match those things.
• He is our super sleeper.  At night.  In the dark.  But come daylight...he is ready to go.  And he wants to go.  Now.  Until it's time to sleep.
• He loves his milk.  He will eat the food you give him, but he really wants that sippy cup or bottle.  He's happiest if you are giving him that sippy cup or bottle, holding it for him, letting him kick back in your arms.  But if he has to feed himself, he'll do that, too.  
• He is fiercely independent.  He makes it clear as often as he can that he is letting you care for him and with no moments notice, he will take care of himself, thank you very much.  If you don't do it his way, he'll just do it himself.  As his Mimi (Grandma) said, "whether it's right or wrong".
• He is no longer the mommy's boy he was at 4 months of age - but it's still written all over his sleeves that he loves his mommy.  Nowadays, though, he loves his daddy, sometimes more.  Depends on who is willing to do it "his way".  He's got a cute thing going right now where if I am taking care of something for him, feeding, changing a diaper, something like that - if I'm not doing it the way he wants it done, he shouts out "Da-ee".  It's so cute!!  He'll continue to shout out Da-ee until Daddy comes to see what's up.  Likewise, if Daddy is doing something for him and not doing it the way he wants it, then he switches to "Mommom".  And he'll keep shouting mommom until I check in.  Whoever will do it his way is his favorite at that moment.  He doesn't like either of us if we proceed to continue to do it our way.
• He is the boss.  And the instigator.  When he plays, he knows what he wants to do and he's going to do that.  If bro-bro gets in the way, bro-bro will get run over, pushed, knocked down, whatever it takes to get bro-bro out of the way.  If he wants the toy that bro-bro has, even if the exact same toy is sitting on the floor at his feet, he will take bro-bro's toy. 
• If bro-bro takes a toy from him...he will scream bloody murder at the injustice just done to him.
• Periodically you can see him sitting on the floor showing bro-bro what he wants bro-bro to do.  Bro-bro, being the little brother, age wise, but the bigger brother size wise, will do as his big brother commands...even if it means getting into trouble.
• He is a sweetheart.  He loves to give great big hugs.  And he loves to give kisses.  If you are sitting on the couch and he is crawling all around, he'll take a break and come over just to give a kiss on your leg and then head back to what he was doing.  When he gives you a hug he puts his little head on your shoulder and grabs on with both hands and holds on like there's no tomorrow.  And he relaxes like you wouldn't believe letting you know that all is right with the world just because he is in your arms.

Green has evolved, too, of course.  Around 8 months he decided I am the reason for living.  The smitten-ness is written on every square inch of his body.  It is definitely safe to assume I am hooked on him, too.  And that's a safe assumption because I've been hooked since day one, too.  When both of these boys think I can do no wrong, that just makes me want to be the woman they seem to think I am.

• He is our scientist.  He has a process for everything he does.  He picks up whatever toy is intriguing at the moment and he checks it out.  He has a process for this, three steps.  First, after picking it up, shake it.  Does it rattle, jingle, make noise?  Second, he tries to spin a part by waving his fingers across some surface of the object.  Does it have moving parts?  How do they move?  Finally, he claps with it.  Does it come apart?  Can it be put together?  Some toys are then perfectly suited for the mouth, and in the mouth they go.  So that he can pick up another toy and start this process again.  Other toys need to be discarded.  Not enough noise.  Not enough moving parts.  It is absolutely amazing, to me, a scientist, to watch this process and see the gears turning in his brain.
• He is our super sleeper.  If he wants to sleep, he will.  Through the night, of course.  Long into the morning, for sure.  Good long naps, too, of course.  He loves to sleep.  He has a process for waking up and it does not include going straight to the bottle.  He'll let you know what he needs and when, but just give him a moment, please, to try and shake the sleep off.
• He doesn't much care for his milk.  Give him food, please.  And serve him.  Feed him every bite, put every morsel in his mouth, just go ahead and take care of him, please.  He will gladly drink up any apple juice you give him - so long as you hold the sippy cup.  Come bedtime, he's happy to drink that bottle of milk - but hold it for him.
• He wants to be cared for and he wants to do things alongside you.  He is happy to hold the bottle, for example, but that doesn't mean you can let go.  If you let go, so will he.  Codependent much?
• He is still the mommy's boy.  But he very obviously loves his daddy just as much.  It is amazingly apparent that he loves his family and he thinks his family is integral to his happy existence.  He wants to be where you are.  Doesn't matter if he's strapped into a high chair or a stroller or a car seat.  So long as he's beside you, it's all good.  If you have to get up and go to the bathroom, just don't leave him behind in the family room with all his toys and his bro-bro.  But bring bro-bro, too.
• He is independent.  He is not the follower or the leader.  He's really curious about what bro-bro is asking him to do and he's very aware that consequences are real.  He knows to stop the "bad" requests before he actually gets into trouble.  He wants to appease bro-bro and Mom and Da.  He finds that balance with ease.
• If bro-bro takes a toy from him, he says whatever and moves on to the next thing.  It's all good.  Whatever's clever.
• He is the little brother but he knows he has the size advantage.  And he does not use that against bro-bro.
• He is a sweetheart.  His hugs, already at the age of one, ensconce you.  You know he is throwing all of his heart, soul, and mind into that hug and that hug is feeding him.  You know all is right when he can put his head on your shoulder and take a big breath in and just hold on.  He can go to sleep within seconds when he gets into his little hug position.  And he's certainly happy to lean back and give kisses.  Right on your check.  

It's fun to be watching the sibling relationship develop.  Blue knows that Green is something special and while he asserts himself as boss and takes as he pleases, he has Green's back like no other.  If Green is upset, Blue can reach out and put a hand on his shoulder and Green will instantly be fine.  Blue knows that he is important to Green and that Green is his lifeline to so much else.  Green knows that Blue tests the waters and puts him in precarious positions but he also trusts that Blue really won't let him get too far into trouble.  And Blue doesn't.  He will stop Green at just the right point.  There are things I am observing them do that I want to ensure to grow and develop and there are other things that I want to ensure they don't pursue.  In all great relationships there is always a giver and a taker.  Ideally, each party can flip flop as necessary based on various things the two in the relationship are up to.  And we see that, that although Blue is the one likely to be taking the toy out of Green's hands, he is also just as happy to give Green a toy back, too.  Like I said, I love watching this relationship develop.  It's important to me that they always know that this relationship can't be beat, that it be grown specially and tended to in order to promote good behaviors and remove bad ones. At the end of the day, these two boys are incredibly lucky to have this relationship in their lives.  I think twins are amazing because of that relationship, something the rest of us simply can't understand.  As my twin uncles say about each other "he's always there".  It can be a detriment, but if treated right, it's the best blessing ever.  They get each other better than anyone else.

Happy Birthday Baby Boys!!!  Mommom and Da-ee love you!!

10/08/2012: Breaks my heart

I came across this blog via a follower of mine that is trying to help another blogger spread the word of a very rare and aggressive cancer.  The child's name is Ty.  He is 5 years old - just had a birthday - and he was placed on Hospice a few weeks ago.

Just like Avery's Bucket List, these parents are trying to raise awareness.  And like a lot of people, The Campbell Family are just trying to find peace with what is happening to their 5 year old son.  The mom is absolutely devastated but she is trying so hard to keep it together for Ty's sake.

Ugh.  I just can't imagine.  For 3 years Ty was a healthy normal baby boy.  And with the advent of a headache, it went downhill from there.  Until it turned around and he was just a stone's throw away from having a terminal diagnosis.  I bawled my eyes out as I read more and more of this story.  Husby told me I was not allowed to read this blog to him.  As much of a crier as I am, Husby can certainly shed major tears, too, usually before I do.  No, this wasn't a tear streaming down my cheek.  This was a full on ugly cry.

It's so weird when one comes across things like this.  I have 2 healthy and beautiful baby boys.  They are normal.  They are hitting developmental milestones usually in advance of normal.  They are growing and soaking everything in.  So much so they refuse to take naps, most of the time.  Just too afraid to miss something.

This mom should be writing things like that!  Not "Not to dampen the happy mood with regard to Ty's birthday, but Lou and I bought Ty a casket today, online, and his suit came in.  Not the kind of birthday "presents" any parent should have to buy.  We are all still praying that we'll never have to use them. "

I feel like I am blessed with my two beautifuls.  Avery - from Avery's bucket list, was a month younger than my guys.  My heart broke for her parents because I was seeing first hand what they should have been seeing with their daughter.  And now, my heart breaks for Ty's parents.  What torment this must be.  To be so helpless in fixing it and protecting him.  Ugh.  Just a completely broken heart.  Add to that a sadness for this little boy that his life has been predominantly about cancer.  How is that fair?

http://www.superty.org/

Posting this is nothing at all.  If I can help this family get the word out and show support and love in the meantime, I absolutely cannot not post this.

10/06/2012: Past due

Hi y'all.  When last you heard from me I was freaking out about going into surgery.  Would it work, would it not?  What would happen if he got in there and found nothing?  What would happen if he got in there and said he couldn't help me.  Ever.  I had no idea what to expect.  Endometriosis is just weird like that.  No two women will respond in exactly the same way.  Here's what happened.

September 24th:
8:00 am.  Started the "Suprep" bowel prep to clean me out in case a colon resection was necessary.  I actually got the doc to approve me starting my Short Term Disability on that day even though I wasn't having surgery that day.  I do not know how I would have worked, or even gotten to work, with that horrid stuff moving through me.  In this endeavor, in this year, I've now had to do clean outs like that three times.  Golytely the first time, a fruit punch mag-sulfate the second time, Suprep this time.  I hated the Golytlely - you have to drink so much in a very short window of time.  But I'd gladly do that over Suprep in the future.  Because I lost my mom to colon cancer, colonoscopies will be done more frequently on me.  Starting this year.  I've been told I'll never do more than 5 years between scopes - where most people get away with 10 years.  Fun stuff.  But I digress...

September 25th:
9:30 am.  Checked in with the day surgery ward.  Got changed and shoved into bed.  I had the wonderful compression hose along with non-skid socks so I could still wander off to the bathroom.  Cause, you know, not having had anything to drink in 15 hours was surely going to make for an endless stream of urine.  We won't even mention what the (probable) IC does to my bladder and ability to pee.

12:30 pm.  I was told to be there at 9:30.  I was told I'd be going into surgery by 12:30.  I was told if that was not the case that they would call me and let me know a later time to arrive.  No one called.  At 12:30, I was still hanging out in the day surgery ward with Husby and Step-MIL and FIL.  It meant the world to me that IL's wanted to be there to show support for both Husby and I.  I may struggle with some of them at times, but I do love me my IL's.  A pretty good bunch, I think, and that they accept me as a daughter of sorts means the world to me.

12:45 pm.  Finally taken to the holding area.  An IV was started.  The nurse anesthetist made the point that I was very dry.  I said I'd had to do the bowel prep the day before on the off-chance that a colon resection might need to happen.  She said, "oh yeah, your doc does the most brutal form of bowel prep solutions.  It's rough to do that the day before surgery.  There are certainly easier ones to do with equal results in prep."  So yeah, I was pretty well dehydrated by the time they were ready to start an IV on me.  She did manage to get the IV started without blowing out a vein, though, and I really appreciated that.  Back in August I had to do a light bowel prep for an abdominal MRI and that event left me fairly dried out, too.  When I was stuck for starting the IV, the nurse did blow out a vein that time.  That area is still sore!

And then....waiting. And waiting.  And waiting.  And waiting.  I'd been promised a valium as that was going to help me with my violent wake up from surgery thing that I do.  But there in day surgery as well as in the holding area I was told no, couldn't have it, I needed to be awake for meeting the surgeon.  People don't get that pain meds and anti-anxiety meds just do not have the same effect on me.  I'm a friggin horse.  Outright sedation hardly works on me.  It always takes a ton more meds than the regular dose to get me to sleep.  So that sucked.  Because, on top of just sitting there staring at a clock, Husby was not allowed to be with me.  I was not allowed my phone.  I literally could only stare at the wall.  At one point, the holding area was completely empty, except for me, and they let Husby come back to hang with me for a bit.  But as soon as the next woman came in to get prepped, Husby was shooed away.

That meeting I 'had to be awake for' with the surgeon went like this.
Hi.  We're going to do surgery.  See you in there.

Not "do you have any questions?"  Not "how are you today?"  Nothing.  Just those three short sentences and he walked away.  Yeah, I can see why it was important for me to not have the valium.

2:30 pm.  I was finally wheeled into an OR.  They got me all set up on a table and then proceeded to try and knock me out.  I had two anesthetists before it was all said and done.  One of them kept yelling at me to breathe, if I would just breathe I would go to sleep.  I breathed.  I breathed as hard as I could.  I swear, how that man couldn't see my chest rising and falling is beyond me.  But then he also kept pulling the mask over to my cheek.  I literally had to keep turning my head to have my mouth/nose under the mask.  I wanted to yell at him back to knock it off.  The other anesthetist kept giving me more and more and I heard him say "she really is a horse."  Gee...why it is meaningful when they say it but it means nothing when I say it?  I know my body.  I know how it reacts.  Seriously.  I'm not lying to you.  What would I have to gain from that?

6:00 pm.  I wake up in recovery.  The nurse is fighting me, as usual.  I felt bad for her.  They gave her the wrong patient!  She was 8.5 months pregnant and about to pop.  And she has to fight me to not get up and walk away.  When I was finally alert enough, that stopped.  Although I struggled like normal, it wasn't as bad as some of the other wake up's I've had from surgery.  Once the nurse knew I was calm, she asked about the pain.  Pain?  What pain?

I said I had some.  Probably a 4 on the scale.  This is right after waking up.  This is without any pain meds onboard yet.  Wait.  What?  I was at a 7 before surgery. After surgery I'm in less pain?  Holey schnikies!

7:30 pm.  Discharged from day surgery and on my way home.

We had step-MIL staying with us that night.  She picked up the boys from daycare and took care of feeding, baths, playing, and reading.  Prior to that day I was afraid I'd be useless for helping Husby out with bedtime. I knew I'd be ok with most all of their nightly routine, but putting them to bed?  Their little kicks across my belly would suck.  So there's step-MIL.  We walk in the door and she's got both Blue and Green cozied up to her.  It can be pretty difficult to do bedtime for both guys at the same time.  You can get them asleep and settled and happy.  You can feed them simultaneously.  But when it comes to putting them down in their respective cribs as you hold the other...that's a trick I haven't mastered yet.  Green, who is a total momma's boy right now, saw me walk in and declared he was coming to me.  He was trying so hard to jump out of Grandma's arms.  It was too sweet, too cute, too funny.  So I took Green and rocked him and loved on him and cuddled him.  And he was happy as a clam.  The boys take turns - one will be a momma's boy and the other daddy's man and then they'll switch it and be the other way for a few weeks.  It's pretty amazing, to me, that they both seem to be ok with not both wanting the same person at the same time.

So I wound up putting Green to bed while Grandma put Blue to bed.  With everyone down, we all went off to our own beds.

Given that this was a laporoscopy, that wonderful gas was pumped into my belly to help doc-specialist see things.  Member that from being banded?  Yeah, I don't.  I did not feel it at all after that lap.  I didn't feel it after the lap I had in March.  I did feel it after the lap I had in April.  And I most certainly felt it this time, too. I know the theory is that Gas-X helps - but this isn't an issue with the intestines - which is what Gas-X tries to work on.  Me and the heating pad spent much time together on Weds.  If I wasn't lying down with the heating pad, then I was up wandering about the house.  By Weds night, the discomfort from the gas bubble was gone.  Yay!

Thursday I went in to see my pain specialist as a follow up to surgery.  I filled him in on what was discovered and what was done.  I will talk to him at the end of next week about possibly having one more week off before going back to work.  Pain specialist guy has finally realized "I'm a horse".  It's not that I want excessive pain meds, which is how a lot of people have treated me through this endeavor.  It's that my body seems to metabolize pain meds quicker and more efficiently than average.

Anywho.  Through last week things just got better and better.  Starting this week we pulled the boys out of daycare and they've been hanging with me.  As the week has gone on, it's gotten more routine-like around here and that's been good.  Before I went back to work for good at the beginning of May, we had a routine here, we functioned well together, both were usually tolerant of me having to tend to the other brother.  But now...no, now we do not have a routine.  They are so excited about being home with me, seemingly afraid they might miss something, so they are refusing to take naps.  That's been fun.  I sure didn't expect that - and it has had a minor impact on my recovery.  But that's ok.  Today, or rather, yesterday, we seemed to really settle into that routine.  Everyone got a good 1 hour nap this afternoon and 45 minutes this morning.

Anywho...moving on.  Monday was a calm day with the boys.  Tuesday, again.  Wednesday...follow up with the surgeon.

October 3rd:
2:00 pm.  Should have been checked in for the appt already but I'm stuck in traffic   I called in to let them know I was going to be late.

2:15 pm.  We arrived and got checked in.

2:30 pm.  Called back and put into a room.  The nurse/ultrasound tech needed to check my incisions.  It was clear she thought I had staples and that she was going to be removing those staples.  Boy was she surprised that I didn't have the open surgery single incision.  No, I have 5 1-inch long incisions all around.  Upper left quadrant.  Belly button.  Lower left quadrant.  Bikini line.  Lower right quadrant.  None of them had staples. So there went that kit she opened without knowing what she was doing.

And then we waited and we waited and we waited.  Payback for being late?  Given how late doc-specialist was with me on surgery day, I didn't care much that we were late.  I forgot to mention that above, didn't I?  Yeah, my surgery started 2.5 hours late because he had to go out to lunch.  Yes, I want him rested (he had a surgery in the morning before me) and really ready to go.  But 2.5 hours?  If he needs that much time to recover maybe he shouldn't plan 3 surgeries in one day.  Other docs I have do things like procedures in the morning and appts in the afternoon so that they aren't burnt out on surgery by the time they get to their second, fourth, or eighth case.  Doc-specialist could certainly do that!

Finally, around 3:30 pm he enters.

He showed me the path report.  It's confirmed.  Endo.  (Didn't know we had a question about that...)  He also shows the path report on what was found on my right ovary.  Not cancer.

So.  I had a very large spot on the culdesac.  For this specialist to say "large" means it was pretty danged big.  This spot was binding my colon to itself as well as to the culdesac.  It was a big source of the pain I was always in.  He found endo on one of the ureters and opted not to touch it yet.  Whenever I have to have surgery again for this he will bring in his team to help scope out the ureter so as to not cause problems with excision.  I had numerous smaller (not small, just smaller than very large) spots all around and he cleaned that all up.  My right ovary had a huge (his word) cyst.  He thought that could have been a source of pain, too.  He said the lap-band looked great and everything in the upper quadrant looked great.

Great.  Then why am I in pain, sometimes, in my upper quadrants?

While I was knocked out, he also did another D&C on me.  He said there was a lot of tissue in my uterus that looked problematic.  The thinking was it was leftover from the pregnancy, that my ob/gyn didn't do a good clean out during my c-section.

I was in surgery for 2.5 hours and quite a bit was discovered.  In the follow up appt on weds he said "we'll see how long this works for".  It could be a permanent fix.  He said it's not likely but it has happened that when women get the "right" surgery, it really does stop the endo in it's tracks.  He said I could end up back here in two years time, and then another surgery at that point.  He said that's most probable given how quickly this all grew back.  I just had surgery for this, doing the same things, mostly, in March.  He said there is also a chance this could be running rampant and I could be in for another surgery in 6 months.

We talked about BC.  I said I wanted to do depo.  I don't want to be back here in six months time.  And I know how my body behaves on depo.  His initial response was depo, for a lot of women, causes colon issues so he tends to recommend against it.  I said I never had colon issues on it in the past.  No mood swings, no problems at all, really.  Only side effect I get is the no period thing - and I have no problems with that "side effect".  Other that that, it also does great for my mood.  He said then he was all for it.  I have an appt with my ob/gyn on Monday to start the shots.  We know Husby can't make babies for at least the next six months.  He'll be doing his radioactive treatment in Nov.  We could try for a pregnancy this month, but we aren't ready, now.  So shutting my system down is what needs to happen.

After that convo, it turned to "I want you to continue to work with neuro-GI guy.  You'll see him once a month or so until we get to the point of another surgery is necessary.  It's how I keep track of my patients."

I effectively said no. Not gonna happen.  I told him we didn't get along all that well and it was because neuro-GI guy refuses to see me as an individual.  Even though his theories don't hold true with me, he's insisting on treating me as if they do anyway.  I told him the example of being called a liar because of my bloodwork results.  I told him that the EEG showed positive for endo, but not positive for GI symptoms this neuro-GI guy usually sees.

Doc-specialist heard me out.  He said again, "well, working with him is how I keep track of my patients".  That's great doc.  But I am getting false diagnoses reported to insurance because of him.

Then he said it.  "Yeah, you aren't the first person this has happened to.  It's rare.  Most women do have X wrong and respond in manner Y.  And you are right, neuro-GI guy can't think outside of his own box when X is wrong but response is in manner C."  So he agreed that I shouldn't continue to work with that dude.  I told him my normal GI is actually pretty aware of endo.  I told him of conversations we've had and treatments that he's tried.  He was impressed.  Wanted name, number, info etc.  Said it could be interesting to get my normal GI involved with his team.

He gave me directions for when to call in if pain starts back in again.

So we'll see where it goes from here. At present, there is no pain.  If this worked perfectly, I might now be saved from a future hysterectomy.  If this works like normal, I should be good for 2 years.  Of course, getting on depo should stop it in it's tracks.  And if it does, well, that should extend the 2 years idea out farther.  We shall see.  I suspect I'll do 2, maybe 3 rounds of depo before getting off it to start trying for our next batch.  And once we are done with having babies, take it all, I say.

I think the one scary thing I have is knowing that at least one spot is still in there, the one on the ureter.  That can continue to grow and spread.  I think I'd feel better about the 2 year idea if all of it had been removed.  But it hasn't all been removed.  Granted, it's just one spot.  But that's all it needs.  After the March surgery there were no spots at all and I still managed to grow endo like crazy.

In other news, the RE that Husby and I can't stand, the one that called me to tell me I was a drug seeker and that she would not help me with pain control - she suddenly decided to care over the weekend.  I suspect that because I told a friend of ours, the ultrasound tech for my ob/gyn, that friend went back to my ob/gyn and said, "did you know Lori's having surgery?"  To which he would have said no.  He didn't even know I tracked down doc-specialist and started seeing him.  And once he heard I was having surgery, he probably called the RE he referred me to.  And she, of course, would have no answers, either, because we quit her - back in July.  The minute doc-specialist accepted me to be a patient of his, we fired that horrible RE.  All she cared about was improving her fertility numbers.  She saw an easy pregnancy with us and wanted "to help us get pregnant".  I firmly believe, still, that we do not need help there.  We got pregnant with the twins with two weeks of starting to try.  Anyway, she called me over the weekend and this was her basic message.  "I'm just calling to see how you're doing.  To see if you need pain med refills, to see what I can do to help you.  I'm here to help you so please call me back so I can help."

Ummm...go jump off a bridge, lady.  You weren't even remotely willing to help us 3  months ago.  I'm most certainly not going back to you, and no, just because you asked me to call you, I don't think I will.  You had your chance to be a good doc and you condemned me instead.  You had your chance to be sympathetic and to really help Husby and I with our health crap of 2012 and instead you chose to judge me and pity my husband instead.  No, I don't think we need your help.

And, of course, since she knows nothing, she wouldn't have been able to tell my ob/gyn anything, either.  I'm sure when he heard from the u/s tech that I was having surgery, that he thought he could call her and get an update because certainly she was the surgeon.  When my ob/gyn referred me to her, he told me, "she's going to hate this.  You are too old and people your age tend to destroy percentages for RE's."  He basically knew she was going to judge me, to condemn me.  I'm not even sure that he really understood the pain that I was in.

But back to the pain.  Here I am, 1.5 weeks out from surgery and I have no pain at all.  Haven't had any since Tues.  And Tues all it was was a vague awareness of my belly button.

So there ya go.  My past due update.  I think I covered everything.  But if you have questions or want more detail on anything, let me know.  I hate the way endometriosis is perceived and I know that half the battle in dealing with the pain is just awareness of this disease.  It is beyond crazy to me that post-op pain was nothing compared to pre-op pain.

I feel like me again.  That's huge.  Husby says "it's apparent my body is no longer stressed out."  How I carry myself, he said, makes it apparent I feel better.  My energy is picking up - more and more each day.  I'm playing with the boys in ways I haven't been able to so far.  This weekend we are straightening out our gym and we are getting back to working out with the start of next week.  I can't wait.  Through this all, I've not had any interest in losing weight.  I've lost 8 pounds in the past 10 days!  You can tell the inflammation is nowhere near what it was because my belly doesn't look swollen anymore.  Just all around great things!

So that's all I got.  Now it's bedtime!  Have a great weekend, y'all!