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!