Scenes from the Immune System Wars

Well, I got the news yesterday, after I called the doctor. Apparently they had been calling and calling and could not figure out why the heck I wasn’t replying.  THEY HAD THE WRONG DAMNED NUMBER.  Whoever at their office that entered my information transposed my two numbers into one; brilliant.

Okay, so the news at hand: the stent in my pancreas did not float away.  It has to come out in the next few weeks surgically.  But, what I did not know is that it has to come out in an ERCP procedure.

“What’s that?” you ask.  ERCP is the more difficult procedure, where they knock me out completely and cut into my pancreas (or bile duct).  It makes everything down there swell and is hard to recover from.  This will be my fourth since Jan. 7 of this year.

For some reason, I had thought retrieval would be by Upper Endoscopy.  That is a much simpler procedure and is how the biliary stents were retrieved.  Silly me.

So, back to Houston and another hospital stay and a big old, “how do we do this and get my husband there and etc. etc. ”

Last night my husband told me he has had some trouble at work due to all the distractions from my illness the last couple of months.  He assured me it was no big deal but I can’t help but wonder.  For the last trip, all he did was drive me but he was preoccupied worrying about me.

I need a friend or a relative that cares enough to go with me and I just don’t know who to ask.  I really don’t. I am out of options.  I missed a lot of vital information from the doctor last time because I was stoned.

My friend was there for the surgery and my cousin was in and out but it just isn’t the same.  This is very, very frustrating.  It makes the whole thing harder.  I don’t mean to bitch but I can’t just worry about the surgery, I have to worry about child care, time off for my husband and what it will do to his job and animal care and everything else.

This is what happens when your parents are dead and your siblings are not terribly helpful. My aunt is around but no longer capable of much.  My best friend and my kid’s god father is just out of cataract surgery (he has type 1 diabetes) and is hopefully getting some vision back.  He cannot drive right now.

Another good friend is undergoing treatment for breast cancer.

My neighbors and friends are all volunteered out.

I feel really, really out of control.  I need help and don’t know where to turn.  I have spent countless hours, days and nights, alone in hospitals.

I am so over that.

And then, when I get home, I am still down and out for at least a week.  I need help on this end with child care.  I have to drag my husband once again, down into the depths with me.

Is there ever an end here?

I am down:  Really, really down. I am in the pits of Sheol; the valley of the shadow here.

YELP.

 

 

Sorry for the Germanism there but it really does make more sense, doesn’t it?

I am trying to coast into the warmer, friendlier weather in a metaphysical way, “For lo the winter is past, and the rains are over and gone.” Song of Songs (Chapter 2, verse 11).

“Rise up, my fair one, and come away..”

I am trying to listen to the psalmist and put the dark winter and its pain and sorrows behind me in every way. But I am not naive’ enough to think chanting the psalms or holding my face to the sun will do the trick.

Something else is required.  What is it?  I want a magic formula.  I have to have one. Oh yeah, damn it; I am an adult and I know there really isn’t one.  Crap.

Does that mean I have to be a cynic too?  Hmmmmmm.

I think I choose to suspend disbelief; like in the movies.  For instance, we took the family to a small renaissance festival last weekend.   Almost everyone was in costume and it was very laid back and friendly.  I was sorry I can no longer swill mead with the best of ’em.

Anywhoo, there were people dressed as elves with nice pointy ears and I pointed out to my husband at one point, “look, there are quite a few elvish folk here.”

He said, “You know this is make believe, right?”

I replied, “No, it’s not. For today, while I am here, there are elves.”

We can make those kinds of choices.  I can choose to point myself towards the sunshine and chant with the Psalmist, “The rain is over and gone.”

I cannot get a head start on the next storm until it hits anyway.  So, in the meantime, if you see a chubby, middle aged woman meandering by the side of the road and looking at the flowers, that is me.

I am glad the spring is finally here.

So, a week ago today I was in Houston, checked into St. Luke’s Episcopal hospital in the medical center.  That place is really kick ass.

The don’t mess around with pain meds or what you can eat or when you need a test or losing your urine or any of those deeply embarrassing things that happen at other places.  The dr. I saw in Houston did not mess about either.

He agreed it was logical to place the pancreatic stent and see if it would help.  First, he had to:

1. Remove the second biliary stent.

2. Decide on the spot whether or not to inject dye into my pancreas.

3. Cut the pancreas and insert a stent.

I decided the risk of infection and failure were worth it and gave him the go ahead.  He was kind and had me admitted for comfort care right there and then and I had some imaging studies done at 4:00 am on Tuesday morning after checking in on Monday evening.

So, he did his stuff and I have a temporary stent in my pancreas that will fall out in a a week or four.  If it does not fall out, he has to retrieve it so I am counting on the fall out thing.

How do I feel?  Sore.  Tired.  Overwhelmed. Scared.

If this doesn’t work, I am out of luck.

Also, I don’t remember a fucking thing from last week.  I was drugged out of my mind and did not have anyone with me for most of the time.  My friend and sister’s sister in law, Feiga, came in when I had the surgery, but I cannot remember much of that.  My cousin was there a couple of times and got me milk shakes and we talked. I just don’t know for sure what we talked about.

So, I am anxious to see the doctor again and hear whatever it is he already told me.  My husband says I told him we (the doctor and I) had a long conversation and I reported it back to him.  The deal is, those drugs are like a mind swipe.

So, one day at a time.  Today is better than yesterday and so forth.

I do know there were some very, very kind people there.  I have never ever felt so warm and fuzzy about a hospital, and that is not just the drugs talking!

Life has been crystallized to its barest essentials for me once again.  All I want is my little piece of relative health and happiness back.

I want time to be with my husband and children.  Time.

I have felt lately like maybe there isn’t too much time.  Melodramatic much?  I don’t know.  It is just a feeling.

I just need to get over myself.  Time, it just all takes time.

1. This won’t hurt a bit.

2. I know about your veins better than you do because I have been doing this a long time.

3. Don’t worry that your blood pressure is super high, we know what we are doing.

4. We don’t need to check your urine.

5. Did you know that CT scans deliver a ton of radiation and can cause cancer?  You should stop having them.

6. You don’t look sick.

7. You don’t need help to the bathroom after I gave you at least three sedating drugs, you look fine.

8. Show yourself the door.

9. The doctor doesn’t need to see that.

10. Are you always sick like this?

I have literally had all of these things happen and heard all of these things.

I feel as though I am on the spin cycle in the washing machine.  Or maybe I am on a spinning carousel and it will never slow or stop long enough for me to get off of my horse.

My life is simply not cooperating with my intentions to have a semblance of normalcy.

I blogged here a week ago (blog is such an awkward verb… it sounds like a body function).

So, the stent was placed and in general things have gone along better than before.  This is good news.  I have been  waiting to hear from the big wigs in Houston so I can have a green light to move on to the next thing.

Then, day before yesterday, it all started to hurt again.

This resulted in calls to the gastro dr. here and culminated in an ER visit at the hospital where he practices.

IT WAS A CLUSTER FUCK.

They did not treat my pain.  They did not treat the anxiety attack I was having as a result of the whole mess.  It was a waste of time, money and energy.

The ER dr. refused to help me out with comfort care because he ‘doesn’t like dilaudid.’

You know, I thought the phrase was, “do no harm.”  The doctors at Scott and White at Round Rock have not gotten the memo.  Every time I am in that facility, I am treated as a crazy person because I have chronic pain.  Also, they cannot see my pancreatitis so even though my dr. went in and found sludge and a swollen bile duct, they say I don’t have it.

 

That again.

I am just done.  I hurt and I want help NOW.

Here I am, two days later, still sick but still alive. I cannot hold anything down but a few liquids.  But, thank God, my aunt has now clarified things for me.

She explained to me this morning that I create all of this with my mind and that the doctor only put the stent in so I would have something to think about.  Oh, and going to the Houston specialist is just a silly adventure.

That hurt.  I mean, I know she is old and mean and crazy but that was just uncalled for.  This from a woman who broke her hip and refused to do the rehab so now she cannot walk well and we are supposed to operate around that.

Sorry to be bitter.

Ya know… I am going to end this on that sad, minor note.  It was a bad, bad week all ’round.  My whole family was trading a virus back and forth, which turned out to be making things worse.

The End.

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.

 

 

I thought it might be a good idea if I blogged on a good day:)

The surgery blues have fled and I think I am better as a result of the procedure. That is all good! I do have to go back in for stent removal but I am filing that away until it happens.

Weight watchers and I are beginning yet again today.  I do not find that depressing at all.  It is a constant battle against the bulge for me, but whatever. All I can do is stick to the plan and eat healthy and hope for the best.

Now that I can eat normal (gluten free) food again, it is a hell of a lot easier to count the points!

I am hoping to get some work from the editing signs my boys pasted all over the UT campus yesterday.

So, basically I am boring.  When I am feeling good I think of so many things, so many places I want to go.  But then I remember Saturday.

Saturday I went all day and had a great dog walk, etc.  Sunday I awoke to inflamed joints and fatigue.

I made the choice to get up and out.

I make that choice every single day that I can.  I just can’t get ahead of myself.

I want to join a choir and attend temple services regularly.  For some reason those are big, big things at this point.  I guess it is because I have kiddos to take care of.  I miss my daughter (at University) and am surprised that my 14 year old son takes up all the time I spent on them together!

But, that is his nature.  I have to nurture his nature…

Oh well, today there is sun and I have washed the gray out of my hair.