Tuesday, June 7, 2011

we are "go" for slice and dice, T minus 4 days and counting

May 1, 2011 at 1:14am
The 29th went better for me than it did for the space shuttle.  Endeavor had a scrubbed launch, I had a mushroom ravioli lunch.  Yeah, ok, bad puns aside, the day was exhausting but the results were worthwhile.

First, the 8:40 am appointment at the hematologist.

Checked in.  Got my sticker.  Was wearing a plain T-shirt this time, so no creative positioning.  Receptionist calls me up.
"Ok, you have a $50 co-pay."
"It says your insurance has a $50 co-pay."
"No.  I have a $20 co-pay."
"Let me go see."
She heads off behind a cubicle wall.  I wait.  She returns.
"Well, according to your insurance you have a $50 co-pay"
I've been trying to pull up the website while she's been away, but for some reason it isn't taking my pin number.
"That's interesting, considering last time I was here it was a $20 co-pay and my insurance has not changed in the last 9 days."
"Well, I'll have them print it up for you and you can take care of it when you're done I guess."

This did not bode well for the day.
Before I can sit back down properly, I'm called back.
Hop on the scale.  Well, there's some good news.  I'm down 18 lbs since this whole mess started.  That's taking it off faster than is healthy, but at this point, I'll take whatever good news I can get.  Then we're off to the vampire cave.  Back into the too-tall chair.  With the pinchy blood pressure cuff.  At least it reads on the second attempt this time.
Two vials of blood later and I'm shown into a room to await the doctor.

Doctor arrives within a few minutes.  Yay, my hemoglobin and hematocrit levels are up.  Yay, my cell size is returning to normal.  We're still in the "low" zone, but they're closer to where they should be, and that's promising.

I mention the excruciating pain I had after the IV iron.  We're talking can't-walk, can't-bend, shrieking-at-the-slightest-movement kind of pain in my hip joints and across my lower back.  She says, "well, some pain is normal after, but it's gone now, right?"
Uhm, no, no it isn't.  I mean, I can move now, but the pain is still there across my lower back.  The cramps still hit across my rib cage when I twist a little.  My hip joints ache continually.  It freaking -hurts- thank you very much.
"Well, that's odd. It should have been gone within 24 to 48 hours.  But it's easing off, so you should be ok."
"But I feel like crap."
"But your levels are going up, so you should start to feel better soon."
"I feel worse than before."
"But your levels are going up, so you should start to feel better soon." -- this one accompanied by furious typing on the computer, several enter key hits and her standing up with a bright smile that somehow didn't seem very... real.
"Ok, we're done, you can check out down the hall and let's make an appointment for a couple weeks from now so we can check those ferritin levels again. How about the 13th?"
"My surgery is on the 5th.  I doubt I'll want to ride this far the week after."
"Oh... oh yes, that's right.  Well, let's say the 20th or so then. Make that appointment on your way out."

And... she's gone.

We go to the check-out desk.  I've since resigned myself to a $50 co-pay, thinking it's most likely a specialist thing or something... the girl at the desk says, "Ok, I see you have a $20 co-pay."


I look over toward the receptionist who checked me in.  She catches my eye briefly, then hurriedly looks away.  Interesting.

We pay the co-pay, make an appointment, and head off to the next doctor.

My appointment isn't technically until 1, and it's still a bit before 10, but I am hoping that I can find out that we can do the hospital pre-op stuff in-between rather than waiting around.  Nope, no can do.  Have to see the gyn/oncologist first, then get sent over to do pre-op.  Ok... so we'll go get lunch.

But it's before 10.  And breakfast just doesn't seem very appealing.  So we go to the mall to wander around until things start opening up for lunch.  I'm already tired, but we're walking and walking and talking and it's alright.  We tried out several benches.  Finally, 11am approaches and we decide on Romano's Macaroni Grill.  Considering neither of us had breakfast, and I'd lost all I'd eaten the day before, it seemed a good choice.

We sat outside on a bench in the sunshine with a nice breeze blowing and waited for them to open.  Lunch was nice.  Yay, for mushroom ravioli. We lingered over lunch.  Partly because I started getting nauseous about 10 minutes in, but persevered.

After lunch, we headed back to the gyn/oncologist's office.  Comfy chairs and free wi-fi.  Not a bad combination.  I lost part of lunch.  We were called back promptly at 1.

Weigh in.  Hmm, one scale or the other is off, because I don't think I ate 5 lbs of food for lunch.  I prefer the first scale.  Blood pressure is up, but the cuff was dodgy.  And it's off to the conference room.

Nurse comes in and gives me the rundown on all the procedural stuff for the surgery... clears only after lunch the day before... nothing after midnight (I'm a gremlin again!)... the usual.  No "Go-Lytely" this time, but I will have to have a "cleanse"... fun times.

Doctor comes in and explains everything about the procedure.  What they hope to do... what they might have to do if the robot can't do it... that they might have to take out my abdominal lymph nodes in order to properly stage the cancer.  It's all somewhat overwhelming.  I mean, I could have what amounts to an outpatient procedure - if the robot can do it and everything comes out easily and the lab says the cancer was contained completely - I actually might get to go home the same day as the surgery.  That's kind of stunning.  If I have to have a standard incision or if other things have to be removed or if there are other difficulties, I may end up in hospital for up to 3 days after.  Surgery on Thursday... out either late Thursday night, Friday afternoon or Sunday.

Another co-pay and we're off to the hospital pre-op.

More forms.  Paying a massive amount of money.  Apparently this surgery will cost $21,000.  At leas, that's what they expect to bill the insurance company.  I had to pay my portion of that in advance.  Cancer is expensive.

Then... another blood draw.  This nurse stabbed me about an inch above where the gal got me earlier and in the same vein.  I tried not to whimper too loudly.  Then an EKG, so a cardiologist can say that I'm ok for surgery.  The tech sent Peter to a waiting area and took me into the room.  I hopped up on the bed, laid down, she stuck on the electrode thingies and 5 minutes later I was electrode-free and walking down the hall to get Peter so we could go home.

I had lost the rest of lunch somewhere along the way, so as a reward for being good, we went to Long John Silvers.  I had overcooked clams and some freaking delicious crab cakes.  Someone was being arrested outside.  We gave a guy parked next to us a jump start for his truck. When we were done... a matter of 2 minutes or so... he said "Thanks! What do I owe you?"

Owe us?  Uhm, nothing.  Nothing at all.  Happy to help.  You have a good day, now.

I am confused.  He asked if we could give him a jump.  He supplied the cables.  It took all of 2 minutes.  Maybe less.  We had agreed to help him.  Why the heck would he want to know what he owed us?

If anything, give someone else a helping hand sometime.  Nothing is owed for common human kindness and courtesy.

We came home.

I slept.

And now.  Now I'm still having the pain in my lower back and hips - but that's ok because it's getting better with time, I suppose.  I haven't thrown up today, so I don't have to call my doctor and have her cancel the surgery pending a gastric enterologist poking and prodding me for some elusive blockage.  And that means, in 4 days I'll be under the knife for what I truly hope is the very last time.

But first.  Monday will see us in Tallahassee - picking up a bed.  Wednesday will see us in the Tampa area - with 2 of my brothers, visiting my 2 aunts.  Thursday... Thursday I'll be at hospital by 9:45am.  11:45am is surgery time.  Peter will be posting on his facebook and making the usual phone-tree calls once anything happens.

And right now... it's almost 1:30 in the morning... and I'm going to bed.

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