Three Months [+ One Week + 5 days]

..not that I'm counting or anything.
I've, of course, been meaning to post for some time. But December has been quite a month, and I'm sure everyone knows how the holidays come and wipe you out and keep you from doing anything "normal" for weeks.

I am, however, happy to report that at this point I am finally starting to feel "normal". At least, this new version of normal. The face is still pretty paralyzed, the hearing on the left still gone, the balance still wonky at times, the headaches still aching, the left side still a little weaker, but I've been working sooo hard, and it's finally starting to pay off.

This past month has been mentally exhausting more than anything. Being kind of teased with the idea of going back to work, only to have it taken away has been a major fiasco. Basically, what it boils down to, is that when speech-language pathology did my Executive Function Test, it found that I had mild deficits in all areas except attention, where I had moderate to severe deficits. As it's been explained to me, this may not be a huge deal to the average guy, but been as I was a high functioning person before, as evidenced by things like my 3.8 GPA in nursing school, these deficits seem *major* to me.

There is a couple things they could be caused by, hopefully all of which are temporary. One is brain swelling. I guess if it swells all over it could potentially mess with the frontal lobe where all the good stuff goes on, even though the tumor was in the back.
Also, just general trauma/surgery no matter what the kind causes some lowering of abilities just due to your body having to deal with something else going on. In the same way, the depression I've had lately would have the same effect.
And then, related to that is my own personal belief of the "cause", which is all the mental energy now devoted to previously subconscious things takes away the amount of mental energy available for things like paying attention. Think about it - if you had to remember to breathe every five seconds or beat your heart 70 times a minute you'd probably not be so good at things like multitasking either. Of course, that's being dramatic, but really - if I want to blink my left eye, I have to think to shut it. It doesn't blink automatically along with the right. I have to remember to put 'tears' in for it. I can't filter sounds from each other (ex - when I'm on the phone I hear the kids talking at the same volume as the person on the phone, and covering my left ear while the phone's on the right obviously does nothing). Balance and movement are being less consciously-controlled now, thank goodness, but add in a variable like dark or a squishy surface and it's a real challenge.

So anyway, that's what the testing found.
Everyone (SLP, PT, general practitioner..) agrees that if I had a "desk nursing job" I'd probably be okay to try, but since I'm clinical, they don't think it's best to try me out while managing people's medications and whatnot. At least not yet.
For roughly two weeks the speech-language pathologist and neurosurgeon played phone-tag so the one could explain my findings to the other. The main importance of that being that the short-term disability group would only take the word of the surgeon, even after I faxed them a letter signed by my speech-language pathologist and physical therapist explaining their recommendation for not returning to work.. yet. I also went to my general practitioner and she agreed - if the people I've been working with for weeks did these evaluations and say they don't think I'm ready, I'm not ready. Too bad for me, Dr T won't authorize any more time off and has told short term disability that. Sooo, I've tried scheduling second opinions with another neurosurgeon and a neuro-psych person. Tough to do in the week before winter break, and no one's called me back yet.
What that basically boils down to, is no income for the last month, no letter saying I can go back to work, no letter [from the surgeon] saying I can't go to work, and lots of phone calls from grumpy people at short-term disability who basically make me sound like a liar who's just trying to work the system to get money out of them.

It's especially hard to case-manage yourself through this sea of paperwork and phone calls and appointments when you have documented deficits in those kinds of mental activities. That's been an "exercise" in itself. The best part is when the disability people say, over the phone, "well you sound fine".

(And speaking of grumpy phone calls, in the days before Christmas we got a letter from Hopkins that a $47000 [yes, fourty seven THOUSAND] bill was being sent to collections because insurance hadn't paid it yet. This is the bill I already paid on before admission and was told "this will be the full amount you owe - the rest will be covered by insurance". I think I've gotten it straightened out now, but man I hate making those calls. And getting those bills.)

In the meantime, I've been working my butt off to be 'recovered' already! I've worked out more since surgery than probably ever in my life. I have the record on the Wii Fit to prove it. Plus on days when I don't do the Wii, I like my Biggest Loser Yoga, and of course they sometimes try to burn my legs off in PT. It's starting to pay off in some ways, as this past Thursday I saw my physical therapist after two weeks of subs while she was on vacation, and she really noticed a difference. She even retested me in the dark and I passed! So tuesday maaaay just be my last day of PT.

I've also been working on the mental stuff and on my face.
In December I saw Speech-Language Pathology twice a week for working on cognitive skills and working on the left side of my face. We tried electrical stimulation for three half hour sessions and then decided to ditch it after there was little to no improvement. Basically she has a little electrode pad that goes on the injured facial nerve and shocks it (it just feels like a weird tingly thing) while I tried to pucker my lips and smile and exercises like that. I see very slight improvement, like I can drink out of a cup without a straw if I really want to so my pucker is a little better, but that's about all. I'm interested to see what Dr F thinks in March - whether he will still be talking surgery or not. For now, I just continue my exercises of basically trying my best to get it to move. Very frustrating, but there's nothing else I can do.

For mental exercises, I was given home exercises on a website called lumosity.com. I've been doing it since just before Christmas and already I feel much better, and my scores on it are improving. Before that, my exercises were do to things that involved as much multitasking as possible, like baking multiple kinds of cookies at the same time. There were moments when I stood in the middle of the kitchen, the oven timer beeping, dirty dishes in the sink, a try of unbaked cookies in my hand, and I couldn't figure out what to do next. It's such a weird feeling to try to describe, and luckily it's just momentry (I didn't burn any cookies), but it's a sudden confusion, combined with fear because I know there's something I should do and it shouldn't be confusing.
But, the lumosity training seems to really be helping, and I spend a good chunk of time on it each day. Actually, that's part of the reason it's taken so long to update the blog, because internet time is devoted to brain training. One of the best parts of it is it tracks your scores in various areas like attention and memory, so I have graphs that prove my improvement.

As for the eye, all good news there. Dr D said it closes about 80% and that's good enough for no more surgery on it right now. I'll see him again in April. Dr L also said he's amazed at how well my cornea is holding up, especially considering the amount of exposure it gets. I'll keep seeing him monthly until my face decides to work again.
For products, I've been using Refresh Celluvisc drops in the day (about every three hours, though sometimes I need them more like every hour and sometimes I can go about 6 hours) and Refresh PM at night. The PM stuff is basically vaseline and mineral oil, and it melts and runs all over my face, so my skin hasn't agreed with it too much. But as long as it works for my eye, I guess I'll have to just deal with the pimples as a minor side-effect.

My scar is still pretty tender, but doesn't look as red now and is largely covered with hair. I have pictures for the next time I have a minute to upload them.

Headaches are still a daily nuisance but are kind of just becoming a fact-of-life. After almost a year now of near-daily headaches, I've learned to deal.

One bad thing has been colds this season. I cough one and it's just lingering. Really wearing me out. I generally need 10-12 hours of sleep at night, and with the cold I'm still tired after that. Actually that was one funny doctor conversation this past month -
Dr J (general practitioner) - How's your energy level?
Me - Better.
Dr J - Do you take naps?
Me - No, not anymore... But I do need about 10-12 hours of sleep at night.
Dr J - And what happens if you don't get that?
Me - Well then I need a nap!

And with that, I better get to bed.