4.5 Months Post Op

I am way overdue for an update. Please know that my absence is a good thing, as it means I'm busy with more important things! In fact, I'm finally at a point where I couldn't tell you how many weeks and days I am out from surgery. There's no more constant ticker going on in my head. it's taken me almost 5 months (this number I know), but things are really shaping up now.

I do have 4 month face pictures, but at this point I might as well save them to do along with the 5 month (isn't everyone excited to see my tiny snarl/smile thing???).

Things I haven't mentioned in the last month are pretty big. First, I went back to Speech Language Pathology for a retest of my Executive Function, and was found to have improved a lot! Enough to be labeled "normal" again! Woohoo! She, still somewhat reluctantly, said she would advocate for my return to work if that's what I wanted. I did want to go back to work, so we talked about strategies for dealing with the things that would be hard, and I said a final "see ya!" to the rehab hospital.

A week later I went to see a second neurosurgeon for a 'second opinion'. Yes, I finally got that schedule after about a month or month and a half. At first it didn't go so swimmingly. It started out like this:
"Are you the patient?"
"Yes"
"Well what do you want?" (okay those might not have been the exact words, but might as well have been)
"Well I'm here for a couple reasons. I had surgery on September 22nd and I wanted a second opinion on some things, one of which is my short term disability.."
(cutting me off) "I don't do disability. I'm a surgeon. What else do you want?"

At that point I pretty much shut down and went into 'give up' mode and tried (unsuccessfully) not to cry. Thankfully, my mom was there and found a good time to steer him back towards that issue and he allowed us to finish explaining why the whole surgeon and disability thing went together. Once everything was explained, and the tears were streaming out of my one good eye, he seemed to feel sorry for me and listened better. He couldn't really make a recommendation about the prior two months I had been out since he didn't know me then, but implied that if these other medical professionals hadn't thought I was ready to return, and I didn't think I was either, then I wasn't. As it turns out, my primary physician told me that Dr T said the same thing... in mid-January when she finally talked to him.

Anyway, most of my other questions (what's your opinion on facial nerve recovery? etc) weren't really answered. It was all "I don't know, you'd have to talk to Dr T." I guess he doesn't know about 'second opinions'. But he did recommend, that if my Executive Function was better, I could return to work part time and work back up to full time. Woohoo! I marched myself right into Employee Health straight away to get the ball moving, and started back the next week!

Another magical thing that happened - the disability firm decided to accept my primary care physician's recommendation regarding being out of work for December and January, so it finally got approved! And, as it turns out, those people are much more friendly to talk to on the phone when they hear you're going back to work. As if I *wanted* to be out, and as if the disability payments came out of *their* paycheck. Ugh. So glad to be done with that.

So I've been back at work two weeks now. I'm only working two eight-hour shifts per week, then next month I'll bump it up to two twelve-hour shifts, and then finally to three twelve-hour shifts. I work from 11pm-7am, so it's still pretty tiring, and it takes me longer to 'recover' and go back to a 'day schedule' in between shifts, but it's good to be back. Everyone I work with is wonderful and has made me feel so welcomed. So far no patients have mentioned anything about my face. I was worried I would feel lost and confused, like I did from time-to-time at home the first few months, but I haven't. At least, I'm fine on the unit.. but I usually forget where I've parked my car by the end of the shift! Oh well! Actually, the hardest part is driving there, since night driving is still complicated, and especially in the city with all the lights! Depth perception is an issue, but I go slow and sometimes make unnecessary circles around the block to go into alternative entrances to the parking garage when I'm not so sure about the first one.

As a fun story, for my second shift back I drove in the snow to get there and then the [first] blizzard happened and I got stuck there! So, I have worked one 12 hour shift when I was having to be there anyway. For the second blizzard, though, I wasn't able to make it in.

The second neurosurgeon also recommended going back to some sort of [emotional] therapy, and possibly getting on antidepressants, but I haven't done it yet. I just can't think about one more thing in the schedule right now. I'm staying really busy, and for the most part am fine. Having a little movement in my face has really helped! But, I do think I might have some post-traumatic-stress issues. I know the best way to deal with that is to keep talking about it, so that's what I do. The reason I think I might have some PTSD type of stuff is because when I sent to Hopkins to pick up my MRI before my dr's visit, I almost had a panic attack. It was really anxiety producing to see those hallways and the parking lot and remember the feeling of sitting in a wheelchair, dizzy and confused and just feeling terrible, in those same spots.
Sometimes I feel it at work, too, in the hospital halls, thinking about trying to struggle around the halls with two people holding me up. It makes me want to cry - a weird kind of happy and sad cry - but I haven't broken down there yet. It helps that there are a lot of other tough survivors who work with me.

Tonight I took the kids to Target, all by myself, and thought nothing of it. When I was putting them in the shopping cart I realized the hugeness of this little task, and reminded myself not to start taking these things for granted again.

I got my medical records in the mail today.. finally. There were a lot of questions I had hoped to get answered with them. Some were, some weren't. Firstly, the actual size of my tumor was bigger than I thought. The actual size was not 4.8cmx2.9cm - it was 5.5cmx3.1cm. Apparently it was putting so much pressure on my cerebellum, that when they opened my head it tried to 'herniate' out (aka pop out!), and that's why they had to remove a piece of it. I feel really lucky to be okay, even more so after reading the report, because the tumor was stuck to a lot of nerves and major blood vessels, not just the hearing, facial, and vestibular nerves.
I knew that my facial nerve was anatomically intact, but I didn't know that it didn't stimulate at the end of surgery. That means the movement I'm getting back now is even more miraculous. (Check the link on management of facial paralysis after intracranial surgery.)
Not answered, were the questions of "WTH is the deal with me apparently moving during surgery?" and "Did I get a blood transfusion / why was I charged for transfusion services?"

The only bad thing right now is headaches. They've still been getting worse, and I'm still being told that headaches are "normal" right now. I'm almost never headache-free, but I do a pretty good job of toughing through it most of the time. About once or twice a week though, largely depending on the weather, I get a killer headache that I can't pretend isn't happening. I get sick to my stomach and sometimes start crying. This is a girl who birthed two kids in her own bed - I'm not particularly weak when it comes to pain.. usually. I see Dr F in March, and I expect to get some answer other than "it's normal". This is not normal. Expected, perhaps, but not normal. After how far I've come, I'm not letting something like a headache take me down. I want answers. For now, though, everyone with stock in CocaCola is safe again, as I'm back to my daily (or twice daily) habit.

And for a somewhat funny story..
Sometimes I have some double vision, mostly on things with high contrast, like black writing on white. I was making a cake the other day, and read the directions I wrote down as "1 1/4 c cocoa powder". I was like "that sounds like a lot, but okay!" and dumped it all in there. Then when I went to mix it up, there wasn't enough wet for the dry and it just didn't make cake batter. So I looked again and there was only one "1" - it said "1/4 c cocoa powder". Oops. I did manage to fix the cake, and we did manage to eat the whole thing, but I used up a lot of cocoa and it was pretty rich!