Oh, what a day.

Sigh.

I impatiently waited for this day to come – Monday, my day of relief.   If you recall, my mom rattled Vanderbilt’s cages and got me an appointment with my old ENT from my first surgery for today.  The CSF leak issue is really draining me and making me void of any hope of recovering from this surgery.

It was horrible all weekend, but I tried to really buckle down and deal with it, telling myself that Monday all would be better. I’d see a doctor, and then I’d be on the road to a fix, and I’d feel better.

Well, that kind of happened.

The day started off really busy.  A week before my surgery, my parked car got run over by a Tahoe, so I had to deal with that finally.   Had to take it to a body shop, get a rental car, and deal with all of the crap that comes with that, so my day started off with a bang.  I do get to ride around town in a brand new Dodge Charger for a few days.  My stepdad is seething with jealousy.

After that, I came home for a quick nap with my cat.  I’m house sitting for my boss right now, so poor Finn is getting the short end of the stick as far as attention goes.   He’s been such a good kitty, though.   He knows I’m super sick, so everywhere I am, he’s right there, too.  If I go to the bathroom, he insists on coming in to make sure I’m okay, and if I walk to the kitchen to make some tea, he’s under foot.   If I’m in bed, he morphs his furry little body into mine and doesn’t move until I move.  Everyone that knows him knows that he’s kind of insane, but I’m thoroughly enjoying this version of him.  He’s definitely racking up brownie points right now.

I’m wearing my father out.   I’m trying to be a good patient, and in my mind I think that I am being okay for what all I’m going through, but I’d be lying if I said that the last few days haven’t been hard on both of us.   I love my dad more than he will ever know or realize, and I know he adores me, but this has been trying our relationship.   I’m on an extremely high dose of steroids, and I cry at the drop of a hat.  He doesn’t know quite how to deal with it.  I don’t think I’m biting his head off at every opportunity, but unfortunately perception is reality.   Today was one of those days – where no matter what either of us say, it’s always the wrong thing.

After my short little nap, we drove over to Vanderbilt for my appointment with my ENT.   At first it was super stressful, because Vanderbilt didn’t do this second surgery, so once again they’re flying blind.  I’m wanting them to fix something and they didn’t do it, so it’s just kind of . . . lost in translation, so to speak.   The only thing I can concentrate on is that I am absolutely freaking miserable, and I know without a doubt it’s impeding my progress.   I have to wake up three or four times in the middle of the night to brush my teeth and gargle with mouthwash because the leak is causing halitosis to a degree I cannot even describe.  Like I’m eating rotting possums for dinner or something.  It’s the most foul thing I’ve ever experienced and it’s driving me batshit.   I hate bad breath/stinky things in general, so when the stinky thing is me?  I am none too happy about it.

Dr. Russell was the ENT that did the approach to my pituitary gland on my first go around.  He’s very experienced with pituitary surgeries, and does over 100 each year, so he’s definitely the guy to see at Vanderbilt.  I remember liking him in 2008, and I was reminded today why I like him so much.  He’s very easygoing, and he’s not one of those doctors that forces you to see his way.   He numbed my nose and used a scope and looked at what’s going on, and he’s not completely convinced it’s a CSF leak, but he’s not denying it, either.  From what he could tell, it is very wet, so there’s either a CSF leak that isn’t quite presenting itself to his camera, or it’s just A LOT of snot.  Either way, he understands it’s making me absolutely miserable.

He gave me two options.  He said he could go ahead and go in and redo the patch his way.  He prefers to do bone grafts over fat grafts because for whatever reason, bone grafts tend to scar over better, giving a tighter graft.  He looked at the fat graft, and it’s still in place, and it’s pulsing when I apply pressure (read: grunt), all of which he said is normal for two weeks post brain surgery.   The nasty taste in my mouth could be the fat graft rotting.  Isn’t that lovely?  Fat rotting in my mouth.  I am sooooooo excited about that.  I’ve always wanted to know what that tasted like. *rolls eyes*

The problem with doing that and doing it so blindly, is he could give me a CSF leak in the process.  He didn’t do this second surgery, so who knows what he’s going to find if he goes up there.  Plus, there’s lots of scar tissue.  So in trying to heal me, he may give me a bigger problem.   That being said, he gave me option number two.  He really wants me to collect some of the drainage in a tube and bring it back to him so he can test it for CSF fluid.  He said even if it comes back negative, it doesn’t rule it out.  One day I could produce CSF fluid, the next day I may just be producing snot.  There’s really no rhyme or reason for this thing, and he said crazy things happen all of the time.  But he’d be more comfortable testing the leakage first just to see what he’s dealing with.

So . . . for the next five days, I am going to try to make my nose leak.   It’s worse during the night, when I’m laying flat.  It kind of “pools” at the back of my nose while I sleep.  So every morning, I’m going to try to get up and make it empty into a tube.  I bet all of you are super jealous you don’t get to do this, too.   If I can collect 1/2 a teaspoon of fluid and bring it back to him, he’ll test it.   By next Monday he should know what we’re dealing with.   He gently reminded me that I’m two weeks post brain surgery.   I had major, major, major surgery and complications are part of the package.   He thinks I’m where I need to be at this point in my recovery and that each week I will notice major improvements.   If, by next Monday, I’m still leaking, and I’m still miserable, he will be agreeable to going back in and fixing the leak or whatever this is with a bone graft.

So I have to hang on just a little longer.   Dr. Russell is a very nice, patient man.  He knows what he’s doing, and he empathized with me.  He knows I’m not having fun at all.  The headaches are brutal, and that’s to be expected to, considering I just had something pulled off of the base of my brain.  My head isn’t supposed to feel happy right now.  I have to remind myself of that.

I am still frustrated with the home health thing.  I have a lot of doctors right now – both in Seattle and Nashville – and so far it hasn’t really been a concerted effort to help get me better.  It feels like no one wants to get their hands dirty, and I’m getting lost in the fold.  Seattle isn’t communicating with Vanderbilt, and Vanderbilt just kind of feels like they’re out in left field with this one.   I went to Dr. Lakhani’s office after my appointment with Dr. Russell and quite literally had a meltdown.  I was sobbing uncontrollably in the lobby.   I just feel like I’m at my wit’s end with this.  Granted, the extremely high doses of steroid are not helping me remain rational and calm, but I digress.  Dr. Lakhani’s administrative assistant was a wonderful resource, though.  He felt really bad for me, and knows it would make me feel better if my doctors in Nashville were all on board so everyone can treat me and know what’s going on.  He managed to get me an appointment tomorrow morning with Dr. Lakhani so I can fill him in on EVERYTHING and not feel so lost.   Maybe once Dr. Lakhani is on the same page as everyone else, then he can kind of take the reigns and guide me through this post-op minefield.

I am still very worried about this infection in my abdomen.  I really need home health care, but without a doctor’s order it’s impossible to receive it.   My PCP hasn’t been involved with this Cushing’s crap at all, so it’s difficult to get him to order home health.   The ER doctors can’t order home health – they can only ask me to follow-up with my normal doctors.  The ENTs don’t really deal with home health, either.  My normal doctor is my endocrinologist since almost all of my health issues are related to Cushing’s.  So now I am pretty much going to beg Dr. Lakhani to help me out with that tomorrow.  I cannot see to clean my wound, and it has to be cleaned every day.   I am freaking out about it, and that doesn’t help me heal, either.

Dr. Russell assured me that I’m either going to get meningitis or I’m not.  While I do need antibiotics to clear up this wound infection, it’s not going to have any bearing or whether or not I contract meningitis.  If it’s going to happen, it’s going to happen, and there’s not a damn thing I can do or he can do to stop it.   We’ll cross that bridge if we have to.  But he did say that after three weeks of a leak, my chances for contracting meningitis do increase. So it’s something to keep an eye on and be proactive about.

I am so emotionally raw right now.  I just feel like throwing in the towel.  I had prepared myself for lethargy, and weakness and soreness and a little bit of depression.  But I had not banked on infections that won’t heal, and nasty drainage from my brain making me sick to my stomach and wretchedly miserable.  Those weren’t supposed to happen, and now that they have, they have completely overwhelmed me.

The steroids are the devil.   I feel so fat and fluffy and disgusting.  I cry over warm Dr. Peppers, and if someone so much as even looks at me in the wrong tone of voice, I erupt into sobs.   I already had enough weight issues to deal with because of Earl, and now I will have an even harder road because of those dead blasted things.  I hate them with a passion.  Tapering off of them has not been successful, but tonight I am forcing myself to go down to 80mg, nausea be damned.  I HAVE to get off of them, and I’m going to have to show my body a little bit of tough love in order to make that happen.   And by Friday, I have to get down to 70mg.   Slowly but surely I will make my way toward my 20mg maintenance dose and hopefully I will no longer be a crazy, steroidal, evil bitch.

I really hope after tomorrow’s meeting with Dr. Lakhani there will be a turning point.  Everyone in Seattle will be on board with everyone in Nashville, and it will become a collective, concentrated effort to heal me.   It will also be comforting to know that if something goes wrong, there’s a doctor on this side of the Mississippi that knows what to do to help me.   So fingers crossed for a good appointment at Vanderbilt tomorrow.  I really love Dr. Lakhani, and I do feel like I’ve cheated on my boyfriend a little bit in seeing another doctor.  But it is what it is, and I had to get healthy.  I hope he understands.

And finally, just so we are clear.  I *am* going to Louisville to see my boy Sam.  I know it seems pretty impossible at this point with everything going on, but I’ve already sworn to be there in a body bag if I have to be.   I need some mental positives, and seeing him do his thing makes me happy, so damn it, I’m going.   Yes, it’s going to wear me out, but that’s what naps are for.   My mom doesn’t quite agree with this decision, but oh well.  I will be even more despondent and ridiculous if I don’t go, so . . .

Thanks for listening to my rant.  I promise I’ll be better eventually.   But in the meantime, I’ll take a Valium if any of you have any extras.  Just add it to my already impressive bag o’pills.   I feel like a one-man drug store.   And no, you can’t have any.  :P

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