hernia update, now with more lung stuff!

Just got off the phone with Emily, the NP In my surgeon's office.  They got the report back from the scans.  So, my hernia is pretty effing complicated - apparently ileum, cecum, and appendix are all not where they are supposed to be.  According to wikipedia those things are all neighbors.  According to Emily, that's a lot of stuff all at once.

Also, turns out they are glad they accidentally took the chest CT because they saw some stuff there too.  Yay.  The node they tried to biopsy two years ago (that would be the one where I hallucinated I was being eaten by a cylon) is apparently still there, and now it has a friend in my left lung.  The old one is 7mm, and the new one is 3mm.  I'm not concerned about it - the only thing we knew for sure about the old one is that it isn't cancer.  I had no tumor markers in my bloodwork a couple weeks ago when I checked in with the oncologist, and shit happens in your lungs as you get older.

So, next steps for me - get on the phone with Stanford and order up copies of everything to be sent to UCSF.  Realistically, that means hand delivering everything. 

Next steps for them - surgeon is supposed to consult with GI surgeons on a surgical plan to put all my bits back where they're supposed to be.  I asked about wait times for an OR and mentioned that the last couple of times it took 4-5 weeks to get me in.  She laughed and said no, they're going to move somebody else to get me in sooner.  MUCH sooner.  I don't know if I'll have a date by this time tomorrow, but it sure would be nice.   

Note - since people tend to assume I'm really upset by all of this - I'm really not upset by all of this.  I'm happy and relieved to have answers and a way forward.  I have anxiety about it - right now it's 90% about getting to a scheduled surgery date without having an emergency beforehand, and 10% about getting the IV on surgery day, whenever it happens. Surgery itself and recovery?  Not concerned at all.  Been there.  Done that.  I know the terrain and how to prepare myself.  I'll be fine.  I also started trying to meditate a week ago (unrelated to all of this) and I think it's helping me here too.   

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I do think it's kind of funny that a couple months ago when this started I described it as "feeling like all my guts fell out."  I was not intending to be accurate.  Also, I think it's kind of funny how I've been relating to the TV show The Walking Dead.  A long time ago there was a comment in the show about zombie smell, and I watched that episode while my chest was rotting off after the mastectomy, and yes, it really didn't smell good.  And now, with all this the image that keeps popping into my head is the end of Nicholas a couple weeks ago.  

Hernia?

This day has been so fucked up, on so many levels.  I had an 11am appointment to see the surgeon.  The other two doctors (my psychiatrist and my oncologist) who have seen what I've been calling the alien pregnancy both thought it was fluid build up, and given everything I knew about the wound vac and how this thing has grown over the last couple of months, I assumed that too.  I also was assuming that I'd probably need surgery and maybe another wound vac to correct it long term. 

So I went in and saw Emily, the nurse practitioner in the office, and showed her the giant lump.  She agreed with the fluid buildup theory and said that it happens some times, hardly ever requires surgery, and sent me off to interventional radiology to get an ultrasound and install the drain.  YAY.  No surgery!  Relief today!  I was THRILLED. 

The most handsome doctor I have ever seen, quite possibly one of the most handsome men I have ever seen, like movie star handsome, took me into the little room to explain procedure.  He was very nice.  I changed into a gown and we went down to the room for the ultrasound.  There were two other docs there (it's a teaching hospital, there are always multiples), and the ultrasound dude.  I laid on the table, they set me up with a warm blanket, they're all chattering about their holiday plans.  They put the goop on me and start the machine, and about five seconds later, all at once, dead silence. 

I've had enough medical crap happen in the last couple of years that I recognize immediately when they're all trying not to telegraph exactly how bad it is.  Handsome doctor pointed at the screen and mumbled "peristalsis", and one of the others mumbled "ten centimeters?".  Everybody else left the room and handsome doc told me that I have a very large hernia, bowel is right under my skin, and that he would call ahead so the surgeon would know what was happening when I got back to the office. 

So I got back there, Emily said she'd sent the orders through for the CT I would need so they get an idea of how bad it is, said it's not an emergency today, but that if I have any new or bad pain, constipation, fever, or vomiting, to come into the ER immediately.  The girl at the front desk was looking up appointments for next week and I asked if there was prep for the scan I needed and said if there's a way to do it today I'd rather wait and get it done.  I had breakfast around 8, so I'd be safe to do the scan by 2pm.  They had an opening at 3:15.  Perfect.  So I went down to the other radiology department for the scan and camped out in their waiting room to wait for a couple of hours.

If you've never had a CT with an IV before, what they do is set up an IV ahead of time, and then when you get into the machine they push a contrast fluid in while they take the pictures.  There's a very disturbing warm sensation when they push it, it really feels like you just wet your pants.   I am a really hard stick - the last three surgeries they've tried both elbows and ended up having to go into my hand to set the initial line for anesthesia, and then they switched it to my foot once I was under and they could dig around with impunity.  

Left arm, she actually got the vein, but it hurt like hell, and an IV there shouldn't hurt after the initial stick.  I told her, and she tried the right arm.  And that's where I started to lose my shit.  A couple years ago, the second time we had to do the hand thing for chemo, the nurse didn't set the needle right, and I told her it hurt (like my left arm did today), and she told me it was fine, turned the chemo machine on and left the room.  And my hand immediately blew up to baseball size as poison was pumped straight in with nowhere access to my bloodstream. 

I basically have a PTSD response to IVs ever since then.  I also (stupidly, naively) didn't think to bring some ativan with me today (anti-anxiety med).  So she tries my right arm, and I'm starting to cry.  She can't get the vein and I start having a panic attack.  The nurse was very good, very professional in response to me, but I completely lost my shit.  By the time we got the thing set in my hand (basically in the joint at the base of my right index finger), I was hyperventilating and sobbing.  They could hear me in the waiting room. 

That experience is so strange.  It's not about pain.  Don't get me wrong, having somebody dig around in your arms and then your hand with a needle hurts like hell, but I've been in a lot worse pain many many many times in my life.  I know it doesn't hurt that badly, but my brain just cannot register it and I completely lose control of myself.  I think knowing that it's kind of ridiculous makes it worse. 

Finally got the thing in my hand.  They came to get me for the scan.  The woman administering it asked what the issue is and I told her about the hernia.  She mentioned that it was odd that they wanted a chest CT for a hernia, and I shrugged and showed her the swelling.  She said that maybe they are looking for issues with my diaphragm and went ahead and did the scan. 

When I last spoke to Emily she had assumed I wouldn't have the scan until next week, and I figured that since I was still there I would check in with her about this one, and confirm I had the right one. 

And then I had my second moment of dead silence in a room full of medical professionals today. 

Wrong scan.  I still hadn't eaten anything and asked if we could do the right one today.  There was a bunch of back and forth.  Apparently you can't do an IV contrast again within 48 hours.  More back and forth between the surgeon's office and radiology, and Emily recommended that I go home and do it next week.  I thought about and said that I would rather get everything that I could done today. 

So they decided they could do one with oral contrast only.  They gave me the stuff to drink and had me sit there for 45 minutes, and we got the abdominal CT done right before the hospital closed at 5:00.  It took me 97 minutes to drive home in traffic. 

And now I wait until some time next week for them to get a date for surgery on the calendar.