Thursday, June 9, 2011

Can they get ANYTHING right?

That's what I'm asking myself right now.  You'll soon understand why.  However, despite my utter confusion and, to be honest, anger, I am delighted to report on the outcome of my visit with Dr. Wiebke.

Mom, Tim, and I headed up this morning to Indy.  Emily was good enough to stay with Rowan and Amelia so they didn't have to go.  That was more for my sake than theirs.  We were all pretty somber on the way up.  I'm not sure anyone is ever chipper on the way to an oncology consultation, but we weren't overtly upset either.  When we got there, we walked into the Simon Cancer Center--it's one of the best in the nation.  I took comfort knowing that, even if what I had was really, really bad, I was going to be in good hands.

Now, a brief review.  Why was I seeing Dr. Wiebke in the first place?  In my initial surgery, Dr. Jones biopsied several of the "implants" throughout my peritoneum.  The biopsies revealed infection-looking type stuff, but also something called mucin.  Mucin implants are associated with cancers of the appendix and the ovaries.  Sometimes they appear benign, but mucin implants, I have learned, are very, very bad and, at some point or another, lethal.  Very few oncologists are trained to deal with these.  Dr. Wiebke is, and so I was sent to see him.

The past couple of weeks waiting to get in have been agony for me and my family.  Amelia's had no idea what's going on, but I'm sure she's picked up on something.  At first, I Googled incessantly.  Then I decided it was best if I didn't read about the 90% mortality rate often associated with this disorder.  Last week, my mom told me she'd been praying about it.  She went on to say:  "Wendy, I'm just praying that that pathology report was wrong and that you don't have this."  I said to her:  "Mom, of course it's not wrong.  Don't hinge your hope on something that is in black and white.  It won't change."

So we've all been silently worrying, stirring, and waiting impatiently to see Dr. Wiebke.  Finally we were there.  I signed in and sat down.  Around me, there were sick people waiting.  Really sick people.  A young girl waiting to be seen...she was wearing a mask.  Likely because she's undergoing chemotherapy.  A woman in front of me had a feeding tube.  She was maybe 40.  That's when I began to freak out.  I know, to some degree since I'm a nurse, what these people go through.  I didn't want to go through and, more importantly, I didn't want to drag my family through it.  I wanted to dart out the door and just pretend none of this was happening.

I was called back and briefly interviewed by a nurse.  Then there was a knock on the door.  I expected Dr. Wiebke, but it was a med student named Josh.  He looked 12.  He had come in to take my history, but it became clear that he just wanted a piece of this hard-to-solve-medical-mystery-action.  The first thing he said, after introducing himself, was "Has Dr. Wiebke talked to you yet?  About what we saw on the pathology slides they sent over?"  We all responded with a no and I began to cringe in anticipation of what he was going to say.

Josh, a 4th year medical student, somewhat inarticulately explained that they believed the initial pathology report had been incorrect.  He mumbled something about no mucin being seen, maybe some endometriosis.  Well, you can imagine our reaction.  WHAT?  It was could it be wrong?  He explained that the pathologists at IU had reviewed it and did not see any mucinous cells, though they did see the remnants of infection and inflammation.

We didn't know what to say.  We bombarded the poor medical student with questions.  Then I stopped and said "Okay.  We need to wait for Dr. Wiebke.  Josh has no power here."  And what I meant by that was, as a medical student, he had no authority to tell us anything.  He always had to defer to Dr. Wiebke.  So he interviewed me about all of my symptoms.  He asked me more than anyone has.  He got the full story over about a half hour.  I think he was interested in this because of the weird nature of my story.

He looked at the pictures and explained how sensitive the peritoneum is (dude, you're telling ME!).  Then he got Dr. Wiebke.

A very tall man, Dr. Wiebke was all smiles:  "Hello, Millers!  I've got very good news!  There's no mucin!"  He could sense our confusion (mixed with joy, relief, and, in my case, anger).  He said "Now, you have to choose which to believe--the first pathologists, or our pathologists."  He explained that two pathologists there independently reviewed the specimens (neither of them having read the report from the other hospital or from each other) and came up with, more or less, the same diagnosis.  The important part of both of their findings was that neither of them saw ANY mucin cells.  None.  At all.

We, and especially my mom, were still not convinced.  It must have sounded as though we wanted the original report to be correct.  We didn't, but the thought of it being and me not being treated was going through all our minds.  Especially given the experiences we've had with doctors that past 9 months--they've always been wrong!  Mom kept asking "Are you sure?  Are you sure?"  Dr. Wiebke pulled up the pictures from my surgery.  He said that those implants, though ugly, were not mucin.  He's seen mucin.  That ain't it.

He had to continue to reassure us (especially my mom), and gradually, over a period of 10-15 minutes, it began to sink in.  I'm not going to die (from this, at least).  I hadn't been very public about it, but I had had communications with Dr. Wiebke and he made it seem like my prognosis was likely going to be grim (of course, he was basing that opinion on pathology he presumed was correctly examined).  I was devastated, as was my family.  I had not even shared with them how bad I thought it was going to be.  And now we're being told the biopsies were wrong.  WRONG.  My mom had been praying for it and I told her it was impossible.  And it happened.

It was the LAST thing I expected to hear.  Even further from anything I ever envisioned was the three of us, leaving there in astonishment, smiling, and trying to decide where to eat lunch.   I had known we were going to leave in tears, with surgery dates and a poor prognosis.  But my mom's prayer was answered.  It appears that what happened to me WAS the infection after all (as Dr. Jones had suspected).  We have to continue to monitor it, but I'm pretty confident I'm going to keep getting better and better.

We are all, of course, quite happy with the news.  Though this process has borne (in the form of me) a skeptic:  Did they send over the right slides?  Maybe they sent someone else's.  Did something happen to the biopsies over time so that they degenerated?  It could go on and on.  Dr. Wiebke assured me that what I have looks nothing like anything life-threatening.  I am, for once, putting my trust in what a doctor has said.

I am both elated and extraordinarily angry about what has happened here.  On one hand, I know that I don't have a life-threatening disease that requires major surgery.  On the other, I'm royally pissed.  My family and I have been through Hell in back the last month.  I could a pathologist get it wrong?  And how often does this happen?  I had silently mocked my mother for praying that the pathology results would be wrong--in my mind it was an impossibility.  But they were.

It's not a common practice to re-run pathology.  It's something Dr. Wiebke likes to do to make sure he knows exactly what he's dealing with.  Had he not...what would have happened?  We would have gone ahead with surgery?  Chemotherapy?  For no reason.  I know that the pathologist was not being malicious, and I'm willing to bet that what happened was he read someone else's sample as mine and mine as someone else's...which means that someone may be walking around (unknowingly) with mucin implants.  It was a medical error or some sort.  And anyone who knows anything about the Institute of Medicine knows about the massive report they put out in 1999 regarding patient safety.  Medical errors are the number one cause of compromised patient safety.  And the bigger part is that it is estimated that over half of them are never even reported.

It seemed to me that Dr. Wiebke's office was not going to contact the previous pathology lab about their mistake.  They said they'd just send them the slides back.  Are you kidding me?  I'm calling that original lab, as well as Dr. Jones' office, to let them know that this mistake was made.  There is obviously a systems issue at work here...and it needs to be fixed.  And fast.

This has been a very trying, frustrating, emotional, and illuminating experience for me (and my family).  I hope that it is over for us.  But for all the other people in the midst of their own hellish journeys, or those who will begin to embark on them, I have one closing statement.  It is forward.  It is rash.  But it is descriptive.  The United States Healthcare system, and specifically the physicians who operate in that system, need to get their shit together.  Now.  As a nurse researcher, unlike med student Josh, I do have some power.  Not the kind of power he's striving for.   But I'm equipped to research people's experiences, what led to them and, hopefully, figure out how to fix them.  I'm going for a run.

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