Month: February 2014

So, today is the day.  Or, at least it is another of those days.  I am having a second ERCP.  I had one in early January and it was really, really hard but it seemed to work.  The dr. cut a hole in my biliary duct, released a lot of pressure and slime and put in a stent.  As soon as I got over being really sore, it felt good.

Then the stent came out. And, it hurt like hell again.

So, today we do it again, with a longer stent and hope it holds up.  If so, I go to Houston for a more permanent stenting procedure in my pancreas.  It is a bit dangerous but could get me more long term relief.

I was scheduled for tomorrow a.m. but the dr. got me into his schedule for this afternoon because I am miserable.   I appreciate that.

I have not had anything to eat or drink all day and it is now 2:00.  I am thirsty and nauseated and in pain.  I want this over with as soon as possible.

I am a bit scared.  I wish I didn’t have to do this again.

I feel like I am getting ready to stand in the middle of traffic and hope nothing hits me but I don’t see any alternatives.  I have to be brave.  I have to keep smile on to keep my family believing that I am fine.

My son is upset and I can’t let him see me stumble.

Only when that sweet hiss of stuff goes to my mouth and veins will I let down.

Does everyone here know what dewclaws are?

Humans don’t actually have them. They are a part of a dog or cat’s vestigial anatomy.  They were put there in order to keep the animal in balance as they take off and run, from predators or towards prey.   Over the millenia, as we have domesticated canines and felines, the dewclaw has gone from a sort of ‘thumb’ to being vestigial or ‘extra.’

The general idea is that it serves no purpose for modern day domesticated animals.  (It should be mentioned here that many ungulates (deer types) have a type of dewclaw as well).  Often, people who concern themselves with their domesticated pets’ appearance, have a dog’s dewclaw removed.  From what I can tell, the dogs feel fine about how their dewclaws look and feel.  It is just a problem for certain dog owners.  Perhaps the owners are not comfortable with their own vestigial anatomy.  Which, finally, brings me to my point.

Humans have vestigial anatomy too. In fact, we have many of them.  Darwin pointed out that we have structures that clearly point out that we have evolved away from the use of one piece of anatomy in favor of another.  A good example would be our earlobes.  They don’t really do anything.  Earlier on, when were more chimpanzee like, they were perhaps more useful.  Now, they just hang there, so we decorate them.  They are vestigial.

Unless you don’t buy that argument.

Don’t worry.  I am not going to go all deconstructionist a la Derrida  on you here.

I just want to make a point.  I know I have one here somewhere:

I am operating on those vestigial, seemingly useless parts of myself just now.  These are things that I used to not even notice about myself or the world about me: the sun is shining, I’m not broke, my kids are healthy, clean sheets on the bed, gluten free pancakes, good books, my dogs, my cat, my husband (sorry dear), and all the other parts of me that have become vestigial because I am used to them.  These things, you may argue, are outside of me. Yes, in a way, but it depends on how you see it.  They are normal, everyday pieces of my world that I have taken for granted.

Today and every day for the last ten or more, I am living in a great deal of pain.  It hurts to breathe.  I feel like there is knife in my side.

I got my pain meds amped up and that still isn’t enough.  Probably eating today was a huge error on my part.  But, it seemed a good idea at the time:)

So, I have to hang on my vestigial fingernails, to whatever I can.

I have to last through four more complete days.  Then I can get some help.

I will do this any way I can.

And I think I am going to need my dewclaws.

 

 

As per my last post, things are still not running smoothly in Katie-land.  But, I don’t imagine that they ever will.  This is the life of a person with chronic illness.  It goes up, down and sideways.  The up periods feel pretty short and fairly few between.  The down parts feel very, awfully, and uncontrollably down.

I would say that sideways is the most common state of being for me.

Right now, I am sliding sideways and headed down.  I have to have two more nasty bits of surgery on my biliary system.  It does not drain correctly at all.  It just sits there, stewing in its own juices.  So, they need to open it up and stick in some new stents and actually make a slice in my pancreas this time.

There are risks and it will definitely be very, very painful.

I’m scared.  I have heard all of the warnings from my doctor.  They are dire and frightening.  I could develop a life threatening infection.

All I know is, I can’t really live the way I am now.  Constant, slamming pain and the inability to eat much of anything, is not really a life.

I titled this entry ‘Acceptance’ because that is where I have landed today.  I have been headed there for a week, screaming and kicking.  But today I saw my therapist and we talked about all the irrational stuff going on in my head and we agreed I was entitled to be irrational about it all because it sucks.

You don’t choose to step in front of an oncoming train because you know, in the end, it will make you feel better.

That is what this feels like.

Also, she and I agreed I could make tons of nit picky lists of stuff that I felt were necessary to keep the house, pets, children and world in general running while I am out of commission. I am doing just that.  I started with a list of how to’s for my 14 year old son.  He is complicated; as is any 14 year old boy.

We also talked about pain, chronic pain and the sort of post procedure blues or blackness that I always seem to fall prey to at some point after a surgery or hospital stay.  I end up in a place so awful it feels like I will never come back out.

But now, I think if I can accept that the horrible, black, nothingness and pain is coming for me and that I will live through it, maybe it won’t be so frightening.

Maybe I can share with my husband ahead of time what that feels like and he will know that all I need is a hug.

So, acceptance.

In a way, it feels spiritual.  I don’t mean that I accept all of this because G–d planned it for me: NO WAY.  I want to be clear here.  I don’t believe in a G–d that plans for his creatures to suffer as a way to learn.  I just mean, for the first time in a long, long, time, I think maybe the Divine has my back going into this.

Whatever happens is okay.  I don’t have to fight it.

As Jews we are known as the people of the book and  the people of the covenant.  I know that people suffer and die all the time.  My struggles are minuscule on a grand scale.  But, they are mine, and I am Known and loved by Adonai;  the One who chooses to be in a giving, covenantal relationship with His creation.

It doesn’t get any better than that.

 

Things are not peachy keen in Katie land.  I have been loath to post here because I don’t want to be the harbinger of pain and sadness.  It’s interesting; I don’t mind writing my essays all gloom and doom and then filing them away, but putting things ‘out here’ in the public forum, seems different.  Maybe that is a clue why I have yet to send any essays out to publishers.  Hmmmmm.

So, it looks like my ERCP surgery with a cut to the Sphincter of Oddi, was a step in the right direction.  I got relief from it.  However, when the stent was removed, the pain started coming back.  According to the doctor, this really shouldn’t be happening.

Yeah, well, according to doctors, I really shouldn’t be happening.  I am a zebra and I have a set of stripes no one has ever seen before.  So, what next?

My gastro dr. is really quite good.  I really appreciate him.  He gets the Zebra thing. He is really frustrated for me that the pain is back.  But, he says at least that gives us an idea about what is going on.  So far, no tests have come back with a single hint of how to proceed.

He told me there is another, more drastic and dangerous procedure that could possibly help.  In that procedure, a cut is made in the pancreas itself and a stent is put in the pancreatic duct.  Often, this is a permanent stent.  For some reason, this is a two part surgery.

When we spoke in his office on Tuesday, he told me he would make an appointment for me in Houston with Dr. Eichmann, who is a renowned specialist in this procedure.  He did point out that he does the procedure as well but wanted another opinion.

On Wednesday he called me and told me he had spoken extensively with Dr. Eichmann and his staff and they recommended he do the first part of the surgery here and then send me for the actual stenting to Houston.

It all sounds pretty overwhelming.

The risk of runaway, horrid pancreatitis, is very, very high.

I feel flat.  I don’t know what to do anymore.  I just want to ignore it.  If I don’t eat much, and I only eat bland food, it isn’t too bad.

Maybe I can hold off for a bit.

I am really, really depressed by all of this.  It is taking a huge toll on my family and my marriage.  I feel like saying, “fuck this… I surrender… kill me now.”

I know I should be grateful.  After all, it isn’t cancer, right?  I don’t know.  All I know is that the little bastards with their little bastard knives are back in my right side and they are sharpening the knives and trying to cut holes in me.  Bastards. Go away.