Month: March 2014

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.