Wednesday, April 4, 2007

Two Week Status Report

I'm celebrating my two week anniversary today, and a lot of you are asking how I'm doing. So it seems like a good time to give an update on my progress.

The good:
Let's start with the positive. I am feeling so much better than I thought I would at this point in the game, and every day comes with new progress.

  • I can be left alone.
  • I can walk unassisted as long as I'm going straight and am in an uncrowded place. I have walked all over this neighborhood and through the park with no problem at all.
  • I can open my jaw all the way now and no longer have pain chewing. Over and over again I have proven there is almost nothing I can't eat.
  • I can sleep through a whole night without getting up for meds.
  • Talking on the phone has gotten easier as long as there is no other background noise and my headache isn't too bad.
  • I can have visitors.
  • I don't sleep all day anymore.
  • I can read.
  • I have gone up and down the stairs in my apartment (slowly, but without incident). This totally freaked my mother out.
  • The incision area on my stomach doesn't hurt at all anymore - it's totally fine.
  • My headaches are less intense and less constant.
  • I am completely out of the Cerebro-Spinal Fluid leak danger zone.

The bad:
Not everything is great yet. In fact, the idea that I can feel so much better, but still have such a long way to go is extremely frustrating. The remaining issues are the ones that will simply take time, and this is where my patience is being challenged.
  • The balance thing is the biggest problem I have right now. This is a hard one to describe. The best word I've come up with to describe how my head feels is "swimmy," although I know this is not very illuminating. If you've ever seen one of those dome-shaped marine compasses that floats in liquid, that's kind of how my head feels. I don't instantly have my bearing when I move my head. It takes a minute for it to settle in before I know "where I am". This has resulted in a Frankenstein-like gate as I have to keep my head very still and straight while I walk. It freaks people out. Also, if I do move my head too quickly as I'm walking (or even sometimes while I'm standing still), then I lose my balance. I haven't actually fallen yet, but I've had a few stumbles.
  • Because the balance thing is an issue, I have trouble in public places. You don't realize how much you are constantly readjusting your position in response to unforseen stimulus. If I'm walking on the sidewalk and someone turns the corner into my path, I am in trouble. If someone walks too close to me, I have a real tough time getting out of their way or even adjusting to maintain the normal "personal space" bubble as one constantly does without even realizing it. This will just take time.
  • Although it's getting much better, I still hear noises inside my head. (So what do I want - a medal? Now I am now just like every other New Yorker!)
  • The sensory issues are very bizarre. I have a lot of trouble with multiple noise inputs. Having the dishwasher and the TV on at the same time is just not doable. I can't have a conversation if there is background noise. And something I didn't expect - even the other four senses can give me overload trouble. Sunlight, traffic noise and wind against my face all at the same time can be enough to make my head throb :(
  • Anyone who has had surgery of any kind will relate to this one: the nerve endings all around the surgical site are damaged. They will regenerate over the next 12 weeks, but in the meantime, one half of my head feels "dead". It's an uncomfortable and unsettling sensation to say the least.
  • Unfortunately, it's not completely dead, because I also still have some swelling, pain and sensitivity on that side. (I mean, what do I expect? They sawed through my skull.)
  • Believe it or not, my right arm is still purple and bruised from some of my IVs, so I don't have full mobility of my right hand yet. The left one is fine.
  • The deafness sucks. I don't know what else to say about this one. In the grand scheme of things that can go wrong, this is such a small problem. I know that. And I will get used to it over time. But right now it makes me feel handicapped and I'm bummed about it. I have friends battling much more serious maladies, so it feels like a trivial thing to complain about. My friend's mother said the smartest thing to me about this when I was talking about this possibility before my surgery. I said the same thing - oh, this is such a small thing. People deal with much worse. And she basically said, "Oh, blah, blah, blah. When it's your hang nail, it really hurts." That's perfect.
The ugly:
My hair has truly never looked worse. On one-side it is an out of control mullet ala Patrick Swayze in "Next of Kin". On the other side, it is like a cat with a bad skin disease. I have started blow-drying it recently, and I'm really not sure what my point is here. Like rearranging the deck chairs on the Titanic. Oh, and I got a pressure wound from the head dressing right smack on my forehead, so that looks really good too. (My bandages were too tight for the first 24 hours. So tight that I got wounds on my head that had to be treated like burns. Nothing like wrapping your head in a vice grip after brain surgery to soothe that headache away.)

I really am trying to be patient. I have to remind myself that only a little more than a week ago, it was so hard to move from a bed to a chair six inches away that I cried (not from pain, but just because I was scared at how hard it was). Now, if you saw me sitting here, you'd never even know I had brain surgery unless I told you (which I instantly would because I wouldn't want anyone to think this hair style was deliberate.)

So in sum, I'm doing GREAT. Much better than I have any right to at only two weeks out. I'm just not going to be instantly back to normal, and the rest will take time. From the nature of this blog, you can plainly see I have plenty of time.

11 comments:

Vicki said...

Joan - you are my hero!! I would not be dealing with this as well ot with as much humor as you. I agree that if it is your hang nail, it hurts - BUT... you have also made me realize that there are things that are soooo trivial. We take so much for granted every day, you are just making that more clear with each entry!! I can't wait till your back up and running and we can have wine and game night again!!!
Stay strong, you are doing great!!!
Vicki

Anonymous said...

Joan -
I'm so glad you wrote this post. I haven't been able to really imagine what you're going through. I can appreciate your situation much better & with more understanding now.

Also - it assures me that you just might be normal after all! Every one of your posts has been so upbeat, fun & funny, and positive -- you have not complained once - not once! An outsider would think that you had just had a mole removed from your toe rather than a tumor from your brain!

In this post, you still did not complain once, but you did describe the healing process and the struggle a bit. You deserve a lot of credit for staying so strong & going through so much. And, FYI, you're allowed to have bad moments & complain,etc. Just as long as they don't last too long! :)

P.S. Will you post a picture so that we can all make fun of your hair?

Anonymous said...

Okay, as someone who has actually seen Joan, I am here to set the record straight. The hair thing is a shameless plea for sympathy. Rather than a mullet, it's more of a Marlo Thomas flip.

Also she didn't mention that those stairs she goes up and down so gracefully are spiral. And steep.

Anonymous said...

Joan, there is a little town in Mayo named Belmullet - do you think this may be where the haircut originated?
look here for some local folks:
http://www.iol.ie/~glosh/band.jpg

What do you think?


Now for the non-smart @ss post - I can't tell you how impressive you are. Just don't have enough words.

love Babs

JAV said...

Hey, guys! Thanks for the encouragement. But don't be too impressed with me - you all would handle this exactly the same way. It's not like I have a choice ;)

Also, the body has a great way of forgetting pain (this is why anyone has siblings). I have already had moments where I've thought, "That surgery really was no big deal." Give it some time - I'll be ready to do it again.

xxxoo

PS: Laura is being kind. It is not a Marlo Thomas flip. Let's just say I'm going the bonnet route for Easter this year.

Unknown said...

Out of the Cerebro-Spinal Fluid leak danger zone??? I'm no doctor, but shouldn't that be number ONE on the list?? A leaky brain cannot be good...


Glad to hear that you are doing so (relatively) well!!! Hope to see you soon...

Keep bloggin!

JAV said...

Ha! Eric, you are probably right. I should have mentioned that one first. Let me tell you - that is not a danger zone I enjoyed being in! by the way - finally watched the first episode of The Tudors last night. I loved it. A while back we tried to watch "Rome" - and I had no patience. This reminds me of that series, but so far, so good. I don't know if you saw my other post about the JRM is a girlfriend beater rumor. Hmmmm....

Unknown said...

Iris is already addicted! I saw your girl-beater rumor (and the gay rumor). I was thinking of telling Iris, but I thought I would wait for some more concrete info before I shattered the JRM myth....

JAV said...

Eric - IMDB's report on the incident below. I am not saying he hit her. But they had an argument that was so bad they both had to go to the police station. Is that normal?


Rhys-Meyers Rubbishes Reports He Beat Up Girlfriend
4 January 2006 (WENN)
Actor Jonathan Rhys-Meyers has rubbished newspaper reports he beat up his teenage girlfriend Reena Hammer, claiming no punches were thrown. The Match Point star, who was arrested with Hammer in January 2005 on suspicion of assaulting each other, insists the incident was simply an argument which got out of hand. He says, "No we didn't punch each other. The newspapers said we punched each other. We were having a bit of a screaming match and the neighbors called the cops because they didn't know who was screaming. We went down to the station, gave our apologies to the neighbors, and the neighbors said that was grand. And that was it. But in the newspapers it was like, 'Jonathan beat up his girlfriend.' And I was like, 'Aaagh, do I really have to deal with that?'"

Anonymous said...

JAV,

My 2 week status report:

A few folks in the elevator today were talking about your Blog, and upbeat attitude, blah blah. I was getting that unusual-for-me feeling of actually missing someone at work, and so I continued the following practice to abate it:

Secretly I've been removing the high-piled Wall Street Journals and Periodicals still being delivered to your office door (Kiplingers, really??). Also, I've been taking your water cases. You should know that I and am extremely well hydrated.

Keep up the good progress. Also, I appreciate how the blog conversation has migrated from Jonathan Rhys Meyers to Mullets. They offset. When my wife talks about Jonathan Rhys Meyers I like to help her imagine him in a minitruck mullet.

SJS

Anonymous said...

OK Joan, I'm a late-comer to this party. And I promise to return to snappy repartee shortly. But having now checked out your blog, I just wanted to say ... you're amazing. F#*&%ing amazing.

That is all.

xoxo
Liz