That time I actually woke up in the OR....

Yes, you read that right!!! When they told me the plan was for me to be awake during the procedure, my response was like "you know that didn't work on me the first time around, right!?!"  But it worked this time!  Okay, okay, I'm getting ahead of myself.

On Thursday, while it was raining cats and dogs, Mom, Dad and I headed out towards Durham for my 10:30 a.m. pre-op appointment.  This was all very "flying by the seat of our pants" style because while I'd been told a clinic to go to and had a general of the building I thought I was supposed to be in, it was all relatively unknown to all of us.  Mom started out driving us....until we got on the interstate.  When I realized she was topping out at 45 mph because she was having trouble seeing the lines it was raining so hard, I insisted we switch drivers at the first available opportunity.  There was no chance we were going to make my appointment at the rate we were going.  Between the drive and my stress about having the procedure in the first place, my blood pressure was sky high by the time we arrived at Duke at 10:20ish.

So I don't know if any of you have been to the Duke medical facilities recently, but it seems like they're huge and all interconnected.  I went into the Cancer Center (where I'd been before and thought I was supposed to start this time) only to be sent to the Clinics.  It was convenient that we didn't have to drive anywhere else and that the buildings were connected so we didn't have to go back out in the rain, but even with a map in hand it was easy to get turned around. So while I started the testing gauntlet, Mom and Dad made themselves comfortable for the wait in one spot without moving.  This seemed to be more extensive than my last pre-op appointment, mainly because I had to give a whole medical history and explain why I was there to begin with (which I didn't really mind because Amy was nice).  Two hours or so later, I was waiting for my skull x-ray which was the final test before I could be admitted.

Then back through the maze of buildings we went.  Through the clinics, through the cancer center, into the DMP (Duke Medical Pavillion) only to be sent to the opposite side of that building to Duke North for my actual admission.  Mom swears we had to have walked ten miles before it was all said and done.  We found Duke North, got some lunch (by this point it was probably 2 p.m. or later), and waited for the call to tell us they had a room ready for me.

Once I got situated in my room, I had these handy little fiducial markers placed around my head. Senthil even shaved a few spots to make sure they had places to stick.  I referred to them as landing lights.  As they were being placed, I was asked questions about what I was there for and which side of my head they were looking at.  I responded I was getting a hole in my head and they better keep their attention to the left side of my head because I would be mad if I woke up with a hole in the right side of my head.  I remembered these things vaguely from my previous operation.  They put them on me and sent me to a final MRI before I went into the OR.  This time I was supposed to keep them in place all night and through the procedure.  There was one placed behind my left ear that I was sure was not going to make it through the night.

Landing Lights!

When I ended up Skyping with M that evening, she asked if I had a tattoo which is when I realized that my head had been signed.  (If you look closely at the pic above, you can see the signature above the fiducial on my temple, right at my hairline.)  I knew they traced around them in case one markers fell off, but the signature was new.  I thought I looked like I could be an extra on a Doctor Who set, but then with the Star Wars movie coming out and everyone getting ready for the advance screenings, I thought maybe I would fit in on that movie set.  I don't know, haven't had a chance to see it yet.

Why did it start glowing!?!

So I kept busy by finishing the absolute final edits on my thesis!!  I was waiting for an MRI, but they couldn't do an MRI until I had an IV in place and it was 10:30 before that happened.  The neuro intern who came by to check on me while I was waiting for the IV allowed that I was her most productive patient on the floor when she found out what I was working on.  Oh, I was on the west side of the 8th floor.  Dad joked that they were putting me in the penthouse.  They finally got in me for an MRI at 1 a.m. on Friday.

Initially, I thought they said I was going back at 9:30 a.m. for an 11:30 a.m. procedure, but it was actually more like 11:30 a.m. for a 1:30 p.m. procedure.  They took me to a waiting room with the 'rents where we met the anesthesiologist and some of his team.  Come to find out, he'd actually worked at the U and was there when Huntsman was getting started.  He knew who the anesthesiologist had been at Utah and the drugs that had most likely been used that hadn't worked on as intended.  He explained that this time, I'd only be under long enough to make sure they got my head secured before I'd be allowed to regain consciousness for the rest of the procedure.

****If you're easily grossed out, stop reading here!! No for real, just stop! **** 

They took me back into the OR, I transferred to the table on my own, then was told to take 8 to 10 deep breaths from the mask they put on me.  I don't remember counting higher than 6.  The next thing I knew, I was awake, people were all around and I had an itch under my right eye.  They'd shaved a little more of my hair while I was out and the fuzzies were what kept making my eyes itch.  I remember asking if someone would please wipe under my eyes.  The next thing I heard was the drill. I remember feeling pressure but luckily nothing else.  I have a feeling I was pretty out of it, though really, the whole shebang only took an hour or so.  I do remember telling Dr. Friedman that he had been my cousin's surgeon years ago.  Mom and I meant to tell him on Thursday when we saw him, but we both forgot.  So obviously, the middle of my biopsy was the perfect time to tell him.  I also remember him humming a song, classical, I think.  I asked what it was, but it pretty much went in one ear and out the other because I have absolutely no recollection of what song someone told me he was humming.  I also remember them discussing something about my stitches.  I know something was added after the initial sutures.  I asked after that if I could move my arms at all to wipe hair out from under my eyes (left arm only) and then I moved myself back onto the bed for transport back to my room.

Just after the biopsy

I had to stay for six hours for observation before I could be discharged.  My discharge was delayed a little because I started to have facial swelling and they wanted to make sure that wasn't a sign of problem.  But Dr. Friedman said they got the samples they needed and that the swelling would dissipate on its own. So I was released with my head wrapped in bandages to a nearby hotel for the night.  If everything looked good, we'd be free and clear to drive back home.

But before we left the area, we met up with Lew at Elmo's Diner for brunch!  For all the adopted daughters of Arthur out there reading this, she's one of your sisters who also happens to have been my college roommate.  After brunch, we hit the road because by gosh we had to make it home in time for the Cooke Family Christmas!!

We made it home and I got to see everybody even though I looked like I'd been hit upside the head with a baseball bat!  By Sunday, I could barely see out of my left eye and felt like I was always wincing because of how tight the skin around my cheek, temple and eye got.  So since Mom and Dad got hit with some nasty allergies and I could literally hear fluid dripping behind my left ear when I held my head upright, I decided I would be well served to just take it easy and sleep as much as I wanted or needed for the next couple of days.

Saturday

Sunday

So for now I'm awaiting the biopsy results to see if Wilbur remains a grade 2 or if he's become an even bigger pest and become a grade 3.  I have a follow-up appointment on Dec. 30 which Mom and I will be traveling to Durham for on Dec. 29.  I truly appreciate everyone's thoughts, prayers, and positive energy.  Please continue the thoughts and prayers as I find out where the path leads from here!!

Oh! P.S. Did anyone else make the connection between Wilbur from Charlotte's Web and the fact that I have an astrocytoma, which are cells known for their web-like appearance????  DG was that what you were thinking when you suggested the name Wilbur and I just never knew it!?!  My night nurse, Morgan, totally thought that was the reason behind the name when I told her the story of Wilbur and it had honestly never occurred to me before.

P.S.S For your Christmas pleasure! 

Merry Christmas to all and to all a good night!!

Like I Need ANOTHER Hole in the Head!!!

You know the saying "I need [whatever it is] like I need a hole in the head!" Well since Wilbur, I've taken to saying "I need [whatever it is] like I need another hold in my head!!"  But apparently, the time has come for me to get another hole in my head. :P

So here's DL:  When I had surgery in Feb. 2014, 90% of "Original Wilbur" was removed so the surgery was very successful. The remaining 10% couldn't be removed because of its proximity to some very important parts of my brain. If the surgeon hadn't stopped when he did, I could have been paralyzed on my right side and/or unable to communicate. My team didn't think I needed to have chemo or radiation at that time.  But it was never a question of "if" I would have chemo and radiation, it was always a question of "when."

Well, my friends, "when" is "now" or at least in the very near future.  It all started back in the early summer when I got the brilliant idea to take myself off my medication.  I know, I know!! You can't tell me anything I haven't already been told and I've seen the error of my ways even going so far as to set AM/PM alarms to make sure I remember to take my meds every 12 hours.  During the late summer months, I starting having "episodes" again even though they are very different than they were before I had surgery, they still feel the same when they come on.  Nowadays, I 'recognize' an episode because I get a sharp, metallic taste in my mouth and my right arm get a pins and needles sensation like it's been asleep.  After a couple of occurrences, I called my doctor and got back on my meds and made appointments for the end of September.

I think I knew even then what this all would probably mean, because I was honestly more nervous for that MRI and those results than I had been for anything else I'd had to go through at that point.  So basically the results showed that the remaining 10% of "Original Wilbur" has started to grow again. It's growing in terms of millimeters, not aggressive by any means, which is a good thing, but the growth means I can't really rest on my laurels. The longer Wilbur is left untreated, the more likely he will cause permanent damage to areas I don't want damaged.

My neuro-oncologist at Utah suggested starting chemo and radiation treatment within the next six months.  I was in tears after leaving his office.  Just because you expect something to the be the case, doesn't mean that you're ready to hear that news.  My neurosurgeon didn't see the immediate need to start chemo and radiation, especially when I said there were so many things that were up in the air in my life that I wanted to get sorted, but he still seemed to think that I'd need chemo and radiation within the next year.  I had time to process the information and talk to family and friends (several of whom made entirely rational and valid points I hadn't initially considered) and I returned to North Carolina with the mindset that I was going to get chemo and radiation over, done with, and behind me as soon as I could.

But then began the "hurry up and wait" game.  I had to find out where I could receive in-network treatment in NC (Duke), then I had to get referred to a neuro-oncologist at Duke, then I had to get my prior test results sent to Duke, and so on and so forth. Since I had in my head that I wanted to have my six weeks of chemo and radiation (per Utah) over and done with before Christmas, it was hard to wait and be patient.  Then I found out that I would have to undergo a needle biopsy before I could be seen by a neuro-oncologist at Duke and I balked.  All I kept thinking was "I don't need another hole in my head!!"  But again, cooler, more rational and logical heads prevailed (namely Amelia) and I realized that most anywhere I went would want to run their own tests on fresh samples and not rely on almost two year old tissue samples.

SOOOO.....the long and short of it is that tomorrow, Dec. 17, I'm going to Duke for pre-op appointments and having a biopsy (where yes, they will put another hole in my head) on Friday, Dec. 18.  And yes, I will be home on Saturday in time for the Cooke Family Christmas!!