16.5 Weeks Post-Op (The Second Mile)

Some awesome things I did in the last week / week and a half:

-took Brodie to Target with me, alone! I didn't brave having both kids, but I did it with the baby! I remember the first time we went to Target post-op, I was so overwhelmed and dizzy I thought if I didn't get hit by a car in the parking lot I would probably fall over in the aisle and start puking everywhere. So, it's a big improvement. No longer crashing shopping carts into everything, either. It's still disorienting to be in less-often-visited busy stores (Ikea), even without kids, but with our weekly trips to Target for eye drops, I've got that one down.

-Took myself to the grocery store and did all the shopping. Didn't do it with kids, but didn't have Matt their with me, either. It's nice to know that when he's sick and can't go out with me we won't have to just starve to death.

-Drove the bigger car (the one I don't like to drive) on roads I'm not really familiar with and in a busy parking lot, successfully.

-Ran a mile. Ran! A mile! I haven't done that since... 5th grade? And haven't done it willingly probably ever. I am not a runner, but I'm making a 5k one of my goals. Being afraid I was going to die made me realize a little bit that it would be a shame for a perfectly good body to die off without having ever really been 'used'. I've never been overweight, but I'm not really 'fit', either. Now I work out (Wii Fit or yoga tape or boot camp tape or something) 1/2 hour to an hour about 6 times a week.
Unfortunately we've had some colds going through the house in the last week (it's been COLD here), so I haven't gone to my parent's to run on the treadmill 3x this week like I wanted to.
Hopefully this all helps to increase my endurance for going back to night shift!


Some not so great things about this week:

-I'm pretty much giving up on short-term disability. I'm making phone calls every day and not getting anywhere with scheduling appointments. I can't even get in contact with my general practitioner to see if she's talked to Dr T. And I've been working at making a second-opinion neurosurgeon visit for almost a month now. Every bit of working with the healthcare system from home has been a disaster from day one, the monday after the ER visit. I can't express enough just how angry I am over it all and just how DONE I am. I'm sad for other people in similar situations, because if a NURSE who is somewhat okay (at least not terminal) can't figure out case managing herself through this mess, how is the everyday really sick guy supposed to do it?

-Headaches. They're baaaaackk! Well, they've never really been gone, but they've been becoming more and more intolerable. Not so much this week. I even gave up and took one of my post-op pain pills the other day. It worked, thank goodness, but I can't take those and drive, or work. Yesterday I just sucked it up and dealt with it since I thought I might have to driev at some point in the day. Today is starting out the same. Hopefully I can get into the new neurosurgeon soon, and I can get some answers. I can't help but be scared of another tumor, though rationally I know it's unlikely.


Next week I have my follow-up testing with SLP to look forward to. I'm really hoping I test better, since I'm finally feeling better (at least cognitively), and want to get back to work.

The Three Month Pictures

Three month post-op face.... "regular" face, trying to close eye, and trying to smile.


Really non-flattering pictures, but whatareyagunnado? I cracked the corner of my mouth trying to wipe lipstick off of it on New Years Eve. As it turns out, it's hard to put that stuff on when you 1) almost never wear it, and 2) can't pucker or move your lips.

Remember when I had red hair and could do this?


Ah, the good ol' days (2007).
I really hate the way my face looks now and am really resistant to people taking pictures. I'm just reallly hoping that one day it's better and that maybe I'll appreciate it when it is.







Also, I forgot I have a three month post-op scar picture.
Not tooooo bad, eh? You can probably tell the part that still hurts a fair bit. But about half of the 6" are within hair now.

15 Weeks Post-Op

I was discharged from PT today!
Apparently 30 minutes to an hour of WiiFit and/or yoga every day helps enough that I could pass my reassessments, even in dim light, and I did well enough on their balance tester machine thing that Sandra felt okay to sign me out. It's bittersweet, as I really like PT and Sandra and Kernan hospital.. but when you're on the treadmill *running* next to an old guy trying to walk without his walker, it's time to admit that you're ready to go. The caveat being that I do need to keep up my homework and I'll likely never be completely 100%. Rough terrain and snow will probably always be somewhat of a problem I think. I plan on taking up hiking this spring to try to work on that.

It's funny to look back on when I started PT roughly 12 weeks ago. Matt drove me, and walked me up there, and I just remember saying "How do they expect us to find this place?! It's like a maze!" Matt was like "It's only one floor up and two right turns..." I felt so confused and unsteady and dizzy!

In other news, I don't have any other news. What I mean by that is, the neuro-psych scheduler I was waiting to hear from said they don't have any appointments until June/July (!!!), and the neurosurgeon I'm trying to go to for a second opinion won't even *schedule* me until my records arrive from Hopkins.
In the meantime, I'm making it my goal to get back to work come February. I'm working so hard, even if the disability group wants to make me feel like I'm not and I'm some sort of a waste.

Also, I thought I should clarify from my last post that the disability group is *not* part of my work, they are a separate company contracted out to handle this stuff. Everyone at my actual job has been great, and I feel really lucky to be working for the hospital I work for.

So right now I'm one more step towards "normalcy" (or at least fewer appointments on the calendar), but I still maintain this place of being stuck between a rock and a hard place while the medical world decides what to do with me. If they ever schedule my appointments that is..

Edit to add - I think the left corner of my mouth may have just moved the slightest bit!

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.