Debbi Bifulco Update

[Cheryl R]

I think there are some people who think we have bells palsy.     I had more than one patient ask me that.     I would sometimes give a brief description of what I had due to the hearing problem.  You could tell people wanted to ask but were trying to be nice and not.            One guy did it by asking how long I had had a problem.                      Many patients were glad to hear about my health problem as I really could understand what it was like to have a health problem esp if they were ones we got in the hospital every so often.             This was a small rural hospital and not a big city one.           
                                                 Cheryl R

[Kaybo]

I definitely got questions about BP when I was pregnant - I guess a lot of women get that when they are preggers!

K

[Debbi]

Do a lot of pregnant women get BP??  (Pardon my ignorance, but all if have is pets...)

And, Cheryl, is what we have different than bells palsy?  I have kind of been assuming that it is the same thing, but wondering now?

When I was in the Recovery Room (where I spent the first 26 hours!) the nurse who watched over me the first night (her name is Megan, and I think she's a saint) shared with me that she had gotten an ear infection some time earlier and had bells palsy for about a month. She was so kind and empathetic and I will forever be grateful to her for sharing her story with me at that time.  I looked at her and all I could see was a beautiful young woman - which made me feel extremely hopeful.  Some people are probably just born to be nurses - and she is definitely one of them. Which reminds me that I need to send a letter to NYU about her...

Debbi - not preggers, but have that BP look...

[Cheryl R]

A Bells palsy person would have just the facial droop which is what to look at us would show.    We have all the other effects that the tumor has also caused but is not apparent unless one is around for more time to see our  wonderful drunken sailor walk,the lack of hearing and our frequent use of the word What!, our sometimes need of a bib and a straw and all the other fun things we have to put up with!                 Bells palsy is something that most people are familiar with so they would just assume that is what we have.                    AN's are another whole matter and NF2 is even more of a challenge to explain!
                                                          Cheryl R

[wendysig]

Hi Debbi -
Today is another hot one.   I don't know if you went out today, but if you don't have to stay in the air conditioning.  It is brutal.  I don't know anything about Bells Palsy but iI don't really think you look like there is anything wrong with you.  If I didn't know better I wouldn't even guess You'd had surgery six weeks ago.  You really do look great and I stand by what I said before.  Only people who know you well  would think you look any different and even they might not be able to tell why.

Wendy

[Debbi]

Today's successful outing...

Lunch with a colleague (who hasn't seen me since surgery) - he concurs that I look just about like myself - until I smile!  My smile is definitely a dead giveaway that something is wrong on the mother ship.  Unfortunately (or maybe fortunately) I tend to be smiling and/or laughing much of the time, so those around me get the full pirate smile effect.  Next time, I'll post a picture with a (half) smile.

However, pirate smile aside, lunch was a success in terms of all the food staying in my mouth, no embarrassing dribbles!  And, Carl kept saying that he couldn't believe how good I looked (Yep, I am a sucker for a kind word these days!)

I do notice that I get very tired if I am talking for awhile - I think the effot of enunciating my b, p, m and w sounds may be a factor.  Does anyone else with facial numbness (BP, whatever) find this?  My jaw, up in the joint by my ear, also gets tired.  Oh, what a strange new world! 

So, lunch was so successful that I decided to push the envelope and go to Shop Rite for some groceries.  it's kind of cheating to go in the middle of the afternoon, but I am  not quite up to "riush hour" shopping yet!  Anyway, bagged some salmon and asparagus, so dinner will be served tonight after all...  Of course, I am not exhausted and may try to take a quick power nap...

And, yes, Wendy, it is hotter than the gates of H#@* outside - let's pray for relief! 

Cheryl, thanks for the BP info - so, basically, it is like we have "Super" BP!!  Great, I love being a winner!

Debbi

[wendysig]

Debbi-
I forgot about your lunch today.  Glad to hear your co-worker thought you look great too.  I'm sure your smile will improve with time.  Small successes lead to bigger ones.

Wendy

[chelsmom]

Hi Debbi,

I've just finished the last 10 pages or so of the posts here.  I hope all is going well for you considering what you've been through.  As far as the picc line/shower wrap.  My daughter, 17 years old at the time, was in the hospital for 3 months (a lot of complications for her but now is doing great) and was sent home with her picc line that she had for another 3 months.  The blood at the site did happen to her and because she was going through 6 weeks of radiation, post hospital release, she was fortunate enough to have nurses and doc's around her all the time that said her line looked fine.  Because she was so unstable/weak during this time I had to help her into the shower.  What we did was take a ziplock storage bag, cut open the bottom, slip it on her arm and tape both top and bottom off with the paper tape that they gave us at the hospital.  Then I always cleaned the tip of the line afterwards with a sterile alcohol pad.  I cut off the toes of new tube socks and kept her line covered at all times.  We were told that this was very important especiallly while out in public.  She also had a HHC nurse that did a good job taking care of the picc line but still she was not confident enough in her to remove it.  After her radiation treatments were over and she got the go ahead we went to the hospital and had the nurse there that helps place the lines remove it.  It was very quick and painless.  Chelsea had her line because her veins had all but disappeared and they could no longer place and IV.  It was also used for TPN, which was her source of nutrition as she had no swallow reflex and although she had a feeding tube, she had developed a situation where she couldn't keep anything in her stomach.  Finally when she was able to keep food down they felt it best to keep the line during the radiation process in case she had any other problems.  It was used a couple times for blood draws during that time. 

Have the doc's given you any idea when they''ll remove the picc line?  I'll be keeping my fingers crossed that it will be soon and things will continue to get back to normal for you.

Take Care,

Michelle

[Jim Scott]

Hi, Debbi:

Just popping into your thread to offer my encouragement and compliment your progress.  The luncheon sounds like it was pleasant and another step toward normalcy, which I know is your goal, as it was mine - and as it is for all post-op AN patients.

I'm sure the lack of facial movement is annoying but I have every expectation that it will resolve soon.  Meanwhile, you're looking fine and obviously coping well with this temporary impediment.  Luncheons with friends, grocery shopping....you're slowly but surely 'coming back', Debbi! 

Thanks for the updates, too.

Jim

[Debbi]

Wow, Michelle - I can't imagine how heartwrenching it would be to have your child go thorugh all of that.  She sounds like a remarkable young woman - wiht a great mom.  Is she okay now?

Thanks for the ideas re: showering.  At the moment, I am using Glad Press 'n" Seal, along with the surgical tape, or packing tape (depending on how long I plan to be in the shower).  Hhmm.  Maybe I should write to Glad and give them a heads up on this new and innovative use for their product???

I am waiting to hear from Dr. Louie today as to whether I continue the IV for another week, or stop at end of day this Friday.  I am hoping for Friday - in which case I can probably get the PICC line out next week (which would be wonderful!!)  I long to have a semi-normal shower with only my eye taped shut!  

I am definitely feeling a lot less fatigued that I was a few weeks ago, which makes me believe that my body isn't expending lots of resources fighting an infection anymore - fingers crossed.

Waiting for the HHC nurse to come by any minute now to draw blood and change my PICC dressing.

[Kaybo]

Debbi~
Do they draw blood from your PICC or somewhere else?  My HHC nurse never took blood, but I had to go to the Dr. every week & they took blood before & after I "infused" - of course, the Dr. is only 5.5 minutes away from me (as is about everything in this town!)!!   
K

[Debbi]

Hi Kay - the first nurse (the bad one) drew blood from my picc line.  However, the orders say to draw blood from a "perihperal" vein, so the new nurses have been drawing from my left arm.  They draw right before my infusion.

I am going to be on pins and needles today waiting to hear from Dr. Louie - it would be totally great if the next nursing visit if scheduled to remove my PICC line!!!!

[cmp]

So glad to hear your lunch and shopping adventure went well, Debbi! And I don't think your friend was "being nice" when he expressed surprise at how good you look--I think he was being perfectly honest! (In fact, he may have been a little nervous about what to expect in light of all you've been through, and was delighted to see that you're still "you", no question about it!)

Re getting tired from talking--this was definitely an issue for me before I had the nerve graft, and even for a year or two after. I guess with less neurons firing to make those facial muscle fibers move, it's kind of like when a lazy person doesn't want to get up off the couch... 

Re Bell's Palsy: The wonderful cantor (singer) at our synagogue was struck with Bell's Palsy in the middle of Rosh Hashanah services two years ago. It was very scary for me watching her--I probably caught the droop beginning in her face before anyone else in the congregation, and was so relieved to learn a few days later that it wasn't due to an AN. I remember giving her all kinds of advice on how to protect her eye (which her doctor really hadn't stressed to her). She didn't sing for Yom Kippur services 10 days later--doctor's orders, and thank goodness she listened to them, as Yom Kippur is a physically strenuous holiday to begin with. I can only imagine how hard she was working to continue to sing beautifully for over an hour with half her face paralyzed...

Carrie

[Debbi]

Carrie - amazing story about your cantor!  I can't imagine trying to sing with this.  Talking is hard enough.  Not surprising that you noticed her facial "droop" right away - I guess we are very tuned into that "look."

Interesting (and comforting) to know that you experiences the same fatigue from talking.  I find that the joint in my jaw up by my ear is very tired and sore at the end of the day.  So much so that chewing is a little uncomfortable.  I've been alternating cold and warm compresses and, of course, my trusty ibuprofin which seems to help.

I am scheduled to give a three-hour workshop/seminar in late July, so really hope that this gets better by then - I'd have to have to ice my whole face!    

Debbi

[lori67]

Carrie, - that is amazing that the cantor could continue like that!  I'm pretty sure if I went numb all of a sudden, I would have been too freaked out to remember what I was singing!

Debbie -  I still get the sleepy speech.  When I get tired in general or have just been talking a lot (which happens frequently), I start to sound like I have half a mouth full of marbles.  Then I know it's time to shut up and go to bed.  I also have had terrible TMJ symptoms.  My dentist says I've had it for years, but he says that to everyone.  I never had any problems until after my surgery.  Now that my bite if "off", as he calls it, due to the lack of muscle tone on one side, I really have issues.  But, fortunately, my trusty ibuprofen or tylenol seems to do the trick for now.

Lori