Debbi Bifulco Update

[wendysig]

Hi Debbi -
I hope Dr. Louie has good news for you today and I hope for your sake he does.  I'm sure having the PICC liine is a real pain and especially when you shower.  The preparations alone sound like you must work up a good sweat before you get in.  I'm crossing everythng crossable and sending positive and healing thoughts your way.

Lori - I'm so sorry to hear you still have so many problems this long after your surgery.  I knew you had some but didn't realize how many.  You certainly do have a great sense of humor and outlook in spite of your challenges.  I've noticed that going through the AN experience seems to make most people stronger.  I can tell is must have done that for you.

Wendy

[leapyrtwins]

Debbi -

I'm hoping that Dr. Louie has good news today 

Jan

[Debbi]

In the interest of time - and because I'm lazy, here's what I just posted to my blog...

Rats!  Well, if that doesn't sum it all up, I'm not sure what would...

While my blood markers are moving in the right direction (I can't believe I'm even blogging about this...), they aren't quite where they need to be yet. Soooo - that means I continue with the IV infusions twice a day. Triple Rats!!!

I must confess to being pretty disappointed. However, Dr. Louie is doing the right thing, and I have complete confidence in him. And, another week of IV still beats re-opening this big incision in my head...

Okay, well, when you put it that way, Debbi...

So, had lunch with my friend and colleague Carl yesterday which was just great. The fact that he didn't run shrieking from the restaurant was an immediate good sign! Seriously, it was great to see someone who knew me "before" and realize that I'm still me, goofy smile and all.

HHC nurse came this morning - a different nurse than last week, but just as excellent. She took about a gallon of blood - which I then FedExed off to the lab (no, I'm not kidding - FedEx ships blood!), and changed my dressing and PICC "nozzle." I mention the latter because the new nozzle works differently than the last one and I had quite a challenge disengaging my IV when it was done. That triggered a call to the HHC company, who then carefully walked me through adding a 12 inch extension to my line. Oh, never mind. That's just too weird, isn't it?

The whole reason for this HHC sage is that in the process of installing my new addition, I spilled rubbing (as opposed to drinking) alcohol all over my cell phone - which promptly died about an hour later. Over indulgence is never good. That in turn triggered a trip to the local Verizon store. After a short - and expensive - 15 minutes, I found myself leaving with a new Blackberry cell phone. So far, I've figured out how to make a call. I am now in search of a teenager to show me the other fine features of this amazing bit of electronics. And I thought the bosu ball was set on earth to challenge me...

Well, see, I feel better already. I am now going to sneak up on the Blackberry and see if I can figure out how to sync it...

[MaryBKAriz]

OOOO, I wanna coe over and see your new Verizon toy! Make sure to keep it off alcohol, though.
 

Love your posts!

Mary

[lori67]

Don't you just love that Verizon New Every Two program where you get a new phone every 2 years? It takes me that long to figure the thing out and then it's time for a new one!  AAHHHHH!!!  I'm sure a Blackberry would take me a good 4 years to figure out.

Anyway, Debbi, glad things are moving in the right direction - in slow motion, of course, but moving anyway.

Wendy -  they say what doesn't kill you makes you stronger, right?  Must be true.  Really, my problems seem very minor compared to what some have to deal with, so I'm just thankful for that.  If there was just some way to spread them all out though, that would be good.  Maybe I should distract myself trying to figure out my cell phone before the 2 years is up?   

Lori

[Mickey]

Hi Debbi -
I hope Dr. Louie has good news for you today and I hope for your sake he does.  I'm sure having the PICC liine is a real pain and especially when you shower.  The preparations alone sound like you must work up a good sweat before you get in.  I'm crossing everythng crossable and sending positive and healing thoughts your way.

Lori - I'm so sorry to hear you still have so many problems this long after your surgery.  I knew you had some but didn't realize how many.  You certainly do have a great sense of humor and outlook in spite of your challenges.  I've noticed that going through the AN experience seems to make most people stronger.  I can tell is must have done that for you.

Wendy

[rosalie]

Debbi,
I'm jealous, my cell phone is about 15 years old. I wouldn't know what to do with a Blackberry. My phone doesn't take pictures or even have text messaging. My niece couldn't believe it when I told her I couldn't text message her.
Rosalie

[wendysig]

Debbi -
Darn!  I'm really sorry you're still stuck (no pun intended) with your PICC.  As you said though, Dr. Louie did the right thing, it is certainly better than the alternative.  Hopefullly another week will do the job and then you'll be free of that thing once and for all!  In the meantime, keep your spirits up as this too shall pass. 

Wendy

[wendysig]

Hi Debbi -
I noticed you haven't posted anything  about yourself in a couple of days and wanted to check in and say "hi!".  Hope you are feeling okay.

Wendy

[Debbi]

Good morning!

First of all, for those who are envious of my blackberry - don't be!  I am completely beaten by it - and am going to have to admit defeat and take it back to the kids who work at the Verizon store to learn how to use it.  At least I can make and recieve calls! 

I am settled in for another week of IV infusions.  This has definitely lost its appeal ... hey, wait, it was never appealing!

Simple pleasures like taking a shower have taken on the feel of an onerous task - once I'm done taping my eye shut and sealing my arm in Glad Press 'n' Seal ... well, you get the picture.  The goal at that point is to get in and out of the shower in the fastest time possible, thus reduing any risk of getting the PICC line wet, or the eye soaped.  Sigh.  I would love to take a long soaking bath, but the only way I can figure out how to do that would be to tape my arm to my head!!    LOL

Okay, so whining aside - I am definitely feeling better these days.  It has been 6 weeks and a couple of days since my surgery (and three weeks since my return visit to NYU).  I still get tired, but not like I did even a few weeks ago.  Some of the random pains in my head and neck are gone or at least a lot better.  The hair around my incision has grown about an inch and it looks like the scar will untilmately be hidden in my hairline.  Jury is still out on the SSD, but there are things I can do about that later.  My face is still refusing to move (other than that one brave little muscle under my eye) but I have confidence that it will eventually be okay.  It is not as droopy as it was in the early days, so I take that as a positive sign.  And, I'm still me!!

So, for those who are waiting for surgery or other treatment - take heart!  Life goes on and it is pretty darned good!

Wendy, hang in there and let me know when you have your pre-op date!

Debbi - ambling along the path to recovery...

[Jim Scott]

Debbi:

Thanks again for the update....one of those good news-bad news reports.  I'm sorry for the bad news about the PICC line having to remain a part of you for another week but I'm encouraged by your obvious signs of healing and recovery.  Aside from the incision issue, which is being addressed, everything else seems to be coming along nicely, if not as rapidly as you might prefer (like, immediately).

Your standoff with your new Blackberry is amusing and reminds why I never bothered with any cell phone that I couldn't get for free and that I had to ask my son how to operate.  However, I wish you success in your quest to conquer your phone. 

Your closing comments ("for those who are waiting for surgery or other treatment - take heart!  Life goes on and it is pretty darned good!) are better said than anything I might venture to add....so I won't.

Keep ambling, Debbi.  You're doing great and showing many others the way to handle AN surgery recovery.  Thanks. 

Jim

[MaryBKAriz]

GOOOOOOOOOOOOOOOOOOOOO Debbi!

I just admire you more and more daily! your attitude is inspirational. While I know this all seems slow to you, to me you just went through surgery and I can't get over the progress you have made through your tenacity and spunk.

You go girl!

Big hug,

Mary

[leapyrtwins]

The hair around my incision has grown about an inch and it looks like the scar will untilmately be hidden in my hairline.

Debbi -

your scar will definitely be covered by your hair and believe it or not, at some point it will most likely become pretty invisible.  I noticed that by the time I had my BAHA surgery - about 9 months post op - my AN surgery scar was extremely hard to see.

And please don't resort to taping your arm to your head so you can take a long, hot bath.  You might dislocate your shoulder     The PICC line will be out before you know it.

Hang in there,

Jan

[Pooter]

Debbi,  I am sorry to hear that things aren't going the way you want.  Things don't always go as planned, do they?  I was supposed to be driving and back to work by now.    The thing is that your doctor is involved and you are doing things to correct the problems.  You are doing well and we're all proud of that.  Things will be back to "normal" soon enough for all of us that had procedures around the same time.  Stay strong, my friend.

Brian

[nancyann]

Hi Debbie:  I understand what you're going thru face & shower-wise.  I'm glad to see that you realize this is all 'temporary', & it will all improve in time.

I saw the picture of you - your paralysis must be improving b/c I don't see a 'droop', & I am so happy for you to look as well as you do.
It seems to me your face will not be permanently paralyzed as mine was (I'm doing the 'happy dance' for you ! !).

This is all very frustrating to be sure - but isn't it funny how we get 'used to' doing the chores - eye care, bandaging with plastic, etc.
Keep a peaceful heart my friend - from your writings I see you are an 'optimist',  your positive outlook helps the healing.

I believe the journey this AN has taken us on makes us so much stronger (if that's possible b/c I see that all of us are very strong people who have come together).
Always good thoughts,   Nancy