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.