09/20/2012: Got news?

I do.  Yep, I sure do - I got news.  I got news yesterday.  Wanna hear it?

If you've been following my blog, my journey, at all this year, you know I thought yesterday was a turning point for me with this journey.  I still think it is - but I'm a bit surprised by the turn.  I'm getting what I want, but only partially.

I went in to see doc-specialist.  That, in and of itself, was a journey.  We have all been hit pretty hard by the flu this week.  Blue and Green had the worst of it on Sunday.  We kept them home Monday and stayed home with them; and we also took them back in to see their doc.  She initially thought they were throwing up because of a brutal cough and post-nasal drainage getting into their little tummies.  She directed us to start their antibiotics back up - we'd stopped them on Sunday as it seemed to be what caused them to throw up.  Well, when we gave them their antibiotic dose on Monday, within 45 minutes they were throwing up again.  So Tues I called the doc's office back and she gave them a different antibiotic.  During the visit on Monday our pediatrician was able to tell us that their ear infections looked much better but they weren't quite yet gone.  So now they're on this new antibiotic.

Funny thing is, we now know it was the flu and not the reaction to the brutal cough/post nasal drainage situation.  But I'm thinking it still wouldn't be wise to go back to that other antibiotic because the ped kept emphasizing that it was the strongest one they could take for their ears - and their little tummies are knocked out right now.

Weds they also started in with the diarrhea.  It's sooo much easier to treat their diarrhea than the throwing up.  It just breaks my heart that all I can do is hold them and cuddle them as their little tummies try to calm down.  Monday night when the throwing up started again, both Blue and Green were looking at Husby and I with looks that just said "please fix this, please mom, please dad, just fix this!"

Well, we all went back to work or school on Tues.  But by noon, Husby was out for the count.  Since we carpool together that meant me leaving work early to go get Husby and get him home.  I had my cystoscopy on Tues so it was going to be an early day, anyway.  Husby threw up 4 different times on the way home.  With that, I knew it wasn't the reaction anymore, but rather, the flu.  Ugh.  My stomach wasn't doing to great, either, but to this point, I've not had to deal with throwing up - just the "other" symptoms.  I'm actually wondering if the band helps me with not having to throw up...

So, Tues I went in for the scope.  Apparently inflammation of the bladder manifests as an increase in the amount of blood vessels in the bladder wall.  The thinking is that the endometriosis is causing the inflammation of the bladder which makes my life that much more fun.  I have times where I'll go to the bathroom knowing my bladder is as full as can be and I'll get two drops out.  Fun times!  Well, uro-gyne-specialist  lady was flabbergasted by the amount of blood vessels she was seeing in my bladder.  She said the tissue still looks very heatlhy - and that is great news.  But my bladder is definitely inflamed.  I have one more test I'll do with her on 10/9 and then about a week later I'll meet with her and hear how she wants to treat this.  The sad thing about interstitial cystitis is that it's like endometriosis - there is no cure.  But hopefully this has been caught early.  IC left untreated can lead to the whole bladder being removed and having to walk around with a bag for the rest of my life.  If I have any hopes of meeting the wonderful Drazil, I know I can't get to that point.  Pee is not one of her "p" words she speaks of with such disdain, but I cannot imagine it's up there on things she's likely to tolerate well, list.

So with that test done, it was back to home picking up the boys on the way.  Husby was feeling better but not much, but he managed to get out of bed and hang with us for the few hours we get at home in the evenings as a family together.  I'll tell you what, though, we were all too ready for the boys to go to bed Tuesday night.  By Tues night at 5:30p, I was out for the count, too.  If' I'd been my normal "only" in pain self, I would not have asked Husby to get up to help with Blue and Green for the evening.

So then we get to Weds.  We took the boys into daycare, well, Husby did.  I was miserable yesterday morning - bringing up the rear, I've been saying.  So Husby handled that all.  I have to say here, having daycare that we can take Blue and Green to, even when we are home, although home sick, is nice.  I can't imagine what SAHM's do when their babies get sick.  Too many SAHM's I know, their husbands wouldn't help when mom is out of commission - because caring for the kids is "mom's job".  I can't imagine what yesterday would have been like if we'd been chasing our happy, beautiful, fun-filled babies around the house.

I literally slept all day yesterday.  Until 2:30 when it was time to get up to head into Houston for the appointment with doc-specialist.  Our first stop was taking Husby to the lab to get blood drawn.  They are checking to see if his thyroid hormones are being supplemented well and should be calling him today to either say "yer fine" or "here's what we're gonna do".  Once done with that, we went over to doc-specialists office.

Sitting there waiting for him I just knew he wasn't going to help me.  The ultrasound tech came in and did a short ultrasound on me, declared all looked well and walked out.  I knew doc-specialist was going to come in and say "let's try this drug".  I don't need drugs.  I'm so sick of drugs.  Just sick of 'em.

Now here's the thing with endo.  It does not image.  You can't see it on ultrasound, you can't see it on MRI, you can't see it on CT Scan, and you can't see it on PET.  You can't see it unless you go in looking.  It's hard to diagnose because of that, because to get the diagnosis, you have to have exploratory surgery.

But like I said, I just knew he wasn't going to help.

So he comes in and says, how'd it go.  I rehashed it all.  I rehashed neuro-GI guys courses of treatment and how incredibly ineffective they've been.  I told him that I tried the treatments but since they did nothing for the pain and only made me dreadfully tired, I opted to not take the pills.  I told him that since we'd seen him last, my endocrinologist is now treating me for "subclinical hyperthyroidism", but that med also made me feel worse -  made me swing to hypothyroidism and that we'd stopped that pill as well.  I told him that working with neuro-GI guy has been a strain on us financially because that guy isn't covered by my insurance.  He did an exam.  My endo is bad enough that he can feel it on exam now.  Last time he said it felt like "thickening" but now tumors are palpable.

And then came the news.  We're doing surgery.  Next Tues.  I don't know what time quite yet - I have my pre-op tomorrow and I'll know more then.  But here's the kicker.  It's what I want, but only partially.  This is exploratory, as well.  He is going to go in laparoscopically and see what he sees.  What he can clean up in entirety, he will.  But if a spot looks like it's too deep or too big or is in a bad angle for working on laparoscopically, then he'll close me up and have me come back later for an open surgery with a full team.  Because of what he was feeling yesterday, he made it sound like a colon resection isn't out question.  But instead of gathering the whole team and wading right into an open surgery, he's going to see if we need to, and if so, we'll do that in a month or so.

Husby asked him point blank - and we'd heard this from him a bunch of times in a bunch of different ways, but Husby really wanted to make sure this is excision.  Most ob/gyn's and even RE's do laser ablation. I sought out this guy because he does excision.  He painstakingly cuts out all the bad tissue to get to the root of the tumor.  In my case, laser ablation just made it all worse.  We don't need to do that again.  And doc-specialist said "I would never do anything but excision, the other is just cauterization, and in effect, all that does is create scar tissue which is what endo loves the most.

So there we have it.  As we were leaving yesterday doc-specialist asked if vicodin was good for post-op pain control.  I said I'm on nucynta now, which is a stronger pain med but uses less opioid, so a bit safer.  He said in that case, he will let my pain specialist deal with the post-op pain.  It's just so crazy to me the amount of pain meds I'm having to take and that it isn't really doing much for the pain.

My pain specialist called me last night to see what the word was from doc-specialist.  I filled him in.  I think even he is relieved.  Prescribing the types of meds he's prescribing and seeing the amount I'm going through, he was concerned.  But to know that surgery is happening and there's an outside chance of a colon resection, he seemed to instantly settle down.  For a moment I think he was thinking I was a drug seeker, afterall.  And I'm not.  I hate living like this.  I'm just trying to get to the point of relief and do what I have to do to get there and not just be laid up in bed writhing in agony - because that's all I ever really want to do nowadays.

Doc-specialist made the point yesterday that it was ok to close up the lap surgery and go back later for an open surgery if that's what he deems necessary because "this isn't cancer".  My brain has a rough time with that.  If cancer is a mutated cell living in the organ being affected and spreading throughout the body to create additional tumors, well, how is endo not cancer?  These are mutated cells that don't know how to slough off anymore, like the normal uterine lining.  And there are certainly tumors all over my body.  I think it's sad how endo is classified.  Back in 2008, congress passed a law that protects people from being fired for various medical conditions such as heart disease, cancer, and immunological disorders.  But endo is not on that list anywhere.  Research shows it is an immunological disorder and it tends to create more tumors than most cancers.  I hate to think this way, but it does feel like this isn't protected because it simply doesn't happen to men.  It's a woman's disease.  I'm just glad I have such an understanding and compassionate team of managers that I answer to.

I hope everyone is having a great week.  I'll be happy when I'm truly done "bringing up the rear" of this flu.  It's been a very long time since Husby and I have had flus like this - we need to go get our flu shots.  Our ped said she'd give Blue and Green their flu shots at there one year checkup - which is almost here.  Less than a month. Crazy!

Speaking of Blue and Green...two funny stories.  Tuesday, while we were all laying in bed, Husby was corralling Green to his side and I was corralling Blue to my side.  We were all just kind of playing and the boys were climbing all over us like we were Mount Mommy and Mount Daddy.  Green just suddenly reached out with both hands and grabbed two fistfuls of Blue's hair.  Blue looked up at me with the smile instantly leaving his face with this look of "what just happened...and why did it have to happen?"  Absolute bewilderment.  I calmed Blue down while Husby reprimanded Green - as much as you can reprimand an 11 month old, anyway.  It was so bizarre.  Blue's poor little face just looked devastated.

But don't worry - it goes both ways.  Last week Husby was sitting in one of our rockers with both boys laying back against him.  Everyone was happy as clams and suddenly, Blue reaches over and just takes Green's pacifier.  Mind you, Blue had his own in his mouth.  Green had that same look of bewilderment that we translated in that case to "what did I do to deserve that"?  He started to cry and we, of course, took the paci back from Blue - which made him mad.  So we took Blue's paci out of his mouth and literally put it right back in and he settled right back down.

Such fun.

Final story - about two months ago, we dropped the boys off at daycare one morning.  With the addition of our guys, the room was over capacity as far as the babies/adult ratio.  So the assistant director came to get someone from the room to take up front as a greeter.  She asked if she could take Blue and we said sure.  So she loaded him into the baby buggy they have that carries 6 kiddoes.  Blue did not like being separated from bro bro.  He just kept looking in the door wondering when Green was going to be brought over to him.  Green, on the other hand, was already fast at work, playing and saying good morning to his buddies and didn't even notice bro bro was gone.  They said later they had to take Blue back and swap for another baby because Blue wanted his brother that much.

Well, yesterday, when they were dropped off, same story - but this time they were taking Green.  Green kept looking in the door wondering when bro bro was going to be brought to him.  He never was.  As they started pushing the buggy away, Blue reached out like a wave and Green reached out in response.  So sweet!

Anywho, that's all I got.  I'll post something next week with how things went.