07/31/2012: This is my journey

I have a post-it note on my clock on my desk at work that says something I try to live by. I see this saying every day, multiple times, and I am left wondering, lately, why? How? Really?

This blog is called "A journey to embrace". It started as a blog about getting a lap-band and then it became about living as a bandster. Over time, it's morphed into the journey of my life.

Since I started this blog, I did "get" that lap-band. I have lived that bandster life ever since. Through it all, this blog has seen me through a miscarriage and then the birth of two beautiful baby boys. This blog has seen friendships rise and fall and it's witnessed undying love for my husband. And now it includes a brutal battle with endometriosis.

This saying is something I think is true in everything I do. I know one of my favorite people took this saying for herself and even incorporated it into a painting that is in her living room (I believe). This saying is both the embracing of a struggle and the peace that evolves from that embrace. But I am finding it incredibly hard to embrace my current struggle.

The saying?

"Embrace the real. Love the journey. Find the peace."

How do I embrace endometriosis?  How do I embrace unending and constantly increasing pain?  How do I embrace struggles with doctors and the unending search for "that one" that understands?  How do I embrace constantly increasing pain meds?  How do I embrace a lack of energy and an inability to really do what I want to for my beautifuls?  How do I embrace this journey?

I know that I must.  To do so will give me peace and peace will ultimately help me gain the upper hand.  But it is beyond a struggle right now.  Every week something new happens to increase just how bad this situation is.  I seem to be in this realm that as soon as I feel I might be turning a corner, a setback occurs somewhere else.

There are a couple of ways to deal with endometriosis, I'm sure you've heard me say.  One is surgery.  One is hormones of some sort, birth control pills or just straight up progesterone.  The final is a hysterectomy.

Looking at the surgical options, most ob/gyn's do laser ablation.  For most women, that's sufficient and it buys them time to do what they want - usually have all the children they desire and then finish with the hysterectomy.  For a few select women, though, laser ablation just makes it worse.  I am one of those "few select" types.

There are 8 surgeons in the USA that do another type of surgery.  Excision.  They literally pain-stakingly cut out all the endometriosis they can see.  These 8 surgeons are specialists and they have worked with this disease so much that they typically see endometriosis that a typical ob/gyn or RE doesn't see.  They tend to get better results. But still, a surgery with them doesn't mean all is said and done.  A hysterectomy is still in the future and future "clean ups" are pretty likely, too.  However, instead of the typical laser ablation...when that doesn't work, most end up back in for another laparoscopy within 2 years...the excision technique, if it needs to be repeated, is more like 5 years.

One of those surgeons happens to be in Houston.  I met him yesterday.  He works closely with a GI who thinks that part of what is happening with women that have endometriosis is a seizure of the large and small intestines, basically.  So he hits the problem through the diet.  They both work closely with a general surgeon who is involved should colon resections become necessary.  They all work closely with a pain specialist.  And so on and so forth.

So that's great.  This awesome team exists right here in Houston and they very well could have answers for me.  But I have to wait 8 weeks to see if we can try to manage this first without surgery.

Doesn't anyone get that if it could be done, it probably would be done by now?  This crap is so fast growing for me that it changes nearly every day.

Take today for example.  And yesterday, too.  I haven't had a fill since February.  I got two fills earlier this year.  One in Jan and another in Feb.  Both for 2cc's.  So theoretically I should have 4 cc's in my band.  I would swear on my life, though, that the second fill in Feb was really just a saline injection for me.  When she stuck the needle in I swear it didn't have the same/normal resistance as it usually does.  I never thought that fill was a fill.  And to iterate my point, nothing changed in going from 2 cc's to 4 cc's and I would expect that it would have.  Yesterday, I woke up nearly unable to eat or drink.  There was a very strong feeling of tightness in my chest and I could literally feel my esophagus "pulling" as I tried to consume anything.  I called my surgeon's office and left a message for the nurse.  She called me back yesterday afternoon and agreed I should come in.

So today I went in.  The RNP I was working with tried her best to remove 4cc's of fluid from my band but only 1.8cc's came out.  I told her I thought that second fill had done nothing, that the saline just went into me.  She said that RNP who did that fill had been let go because that happened a lot with her.  So we agreed, 1.8cc's was probably correct.  She pulled it all out, flushed it out, then put another 1.8cc's back in.  She then removed 0.8cc's and took me back to be re-xray'd.  As I was waiting for the tech to get set up, I told the RNP it still felt too tight.  Trying to swallow saliva, I felt it just sitting there, that same feeling of tightness, that same pulling of the esophagus.  So she went ahead and removed all the saline in there.  They did the x-ray and I was showing perfect restriction.  With nothing in there!!


We went back to the exam room and she started trying to pull the needle out of the port.  She commented that my belly was rock solid - incredibly swollen and inflamed.

Yep, I said, I have endometriosis and I have it in some pretty bizarre places.  Around the pancreas.  Around the liver.  And I suspect, now, around my stomach.  If it's not actually around my stomach, then it's causing severe inflammation in the area now.  Endo is known to get into the lungs, into the brain, even into the nose.  My ob/gyn had a patient who had it in her nose.  And when she'd get her period every month, she'd also get nose bleeds.

That's the problem with endo.  Not only are these tumors everywhere and invading and perforating healthy tissue.  This stuff also bleeds every month, just like the endometrial tissue in the uterus.  However, the tissue in the uterus passes out through the vagina and out of the body.  The stuff that is on the liver, on the pancreas, in the nose, for example, still bleeds, too.  But that blood has nowhere to go.  So it builds up as scar tissue and all the healthy tissue becomes inflamed because of the accumulation of dead blood cells.

So while yesterday seemed a step forward in finally getting involved with a great team, today was a step back.  I have no fluid in my band and yet I am still tighter than I would like to be.

This is my journey.  I know where I am.  I have to prove it to doctors.  I don't know how I can know this so emphatically but I know that altering my diet will not resolve my pain, not at this stage.  I know that starting hormones won't resolve my pain, not at this stage.  I know that the pain meds I am on are nowhere near enough.  But I have to prove it.  And through proving it, this endometriosis will continue to grow.

I don't believe that I was stage 1 when my ob/gyn did my surgery back in March.  They stage this based on the sample sent to pathology - but if my ob/gyn didn't dig deep enough as he was removing the endo, the sample wouldn't have been true.  From a lot of what I have learned, laser ablation in and of itself means he did not go deep enough.  The burning of the tissue from the laser makes the healthy tissue surrounding it "burn" meaning he's looking at burnt tissue and therefore cannot discern diseased tissue from burnt tissue.  To truly get to the bottom of it, it has to be cut out.  Many surgeons will actually cut the sample being sent to pathology for precisely that reason.  My surgeon did not.  So, by default, the sample sent to pathology was not a true sample of what is within me.

With that said, though, it is also conceivable that between March and now, my endometriosis has grown so fast and spread so well that it could have gone from stage 1 to stage 3 in this time.  The previous RE I was working with tested that cancer marker that showed I am probably at stage 3 - at least.  And that was a month ago.  It is spreading fast, that I know.  Every month it gets into a new nook and cranny.  Every month the pain intensifies.

I find it funny what I have to do for the next 8 weeks.  I have to do things like not drink red wine to prove my diet isn't my issue.  Since this started, back in February, I have chosen to not drink any alcohol at all.  I do not want to mix narcotics and alcohol.  My body is going through enough trying to keep up with these narcotics.  I am not trying to kill my liver.  So red wine is not my issue.

In reviewing the diet this GI is going to give me tomorrow, it's hilarious to me that I have to prove this over the next 8 weeks.  This diet is a bandster diet.  It's precisely the diet I already follow.  But I'm fat again, weighed in at 252 today.  Who would believe at my size that I'm actually eating healthily?

But if you consider that my stomach is rock hard with bloating and inflammation, well...maybe this weight isn't all fat, afterall.  It actually doesn't look like it.  The last time I was this weight I was significantly smaller than I am now.  To add to that, my legs are do not match my stomach.

I must figure out how to embrace this journey.  To not embrace it is to destroy me.  And I can say whole-heartedly,

I.  Do.  Not.  Want.  To.  Be.  Destroyed.

It's that simple.  

This journey is meant to teach me something.  It is not teaching me that I am strong.  I knew that.  I've been through enough in my life to know that.  It is not teaching me that I am weak.  I knew that, too.  Most people don't think that about me - so maybe this is a learning lesson for everyone involved with me in whatever way, shape, or form they may be.  Maybe it's as simple as keeping me from having another child "too soon".  Because surely, if this weren't happening to me and thyroid cancer weren't happening to my husband, we'd be trying again.  But we did "give up".  There's too much going on.  Pregnancy could give me relief - but then again it could not.  And given that I can't survive this pain without pain meds, I'd be in a world of hurt while pregnant.

Who knows.  I just know I have to find my peace.  This is my journey.  I must embrace it.