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5 appts today, 2 patient updates

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Today Dan saw both his ENT Surgeons, and his oncologist-- all raving reviews of his weight gain (still holding his 20 lb gain at 160, and TPN is only 5 nights a week now! Everyone is happy. He also got a surprise visit from his dietician, and she too is thrilled to see him, and also a little concerned like me that as the TPN goes away - some of the weight might. We have decided to turn him into a full time grazer. (He just went to buy more ice cream!) His biggest complaint now is eating when not hungry. And he is to trade his drinking water for sugared drinks to help make up for more TPN replacement calories.. But he's Looking Good!

Then I saw the folks at the pre-op center, they sent in dracula, the EKG, the nurse for history, and the anesthesiologist. I was cleared for Friday.. even after having a bit of water weight due to a small bag of potato chips yesterday. (This getting Dan to eat thing, is causing me weight issues!) Then, we were off across town to the endrocrinologist (Dan also see's her) and she was thrilled to see him almost normal... (Little does she know, he's in the abi-normal club). And she talked about all the options we have, and supported the surgery, and gave us the prescription for meds for no thyroid.. so we are set and ready to go back to Philly on Thursday evening staying at a near by hotel so we are close incase it's a super early surgery (one can only hope it is).

The doctor told Dan today it should last about 3 hours. And Vivian has agreed to keep intouch with Dan on Friday, and she will keep you all posted until I can "see" my ipad and type sometime over the weekend!

I so much appreciate the weeks you all have kept me calm and put together waiting for this..

Hugs and Love,

Kari

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

Hi Kari,

That's great news about Dan! I hope to get to that point myself in the not too distant future. 

I had to chuckle about what you said concerning getting Dan to eat causing you weight issues. Marcia has been using that one since December and my 1st surgery! She has a theory that my weight loss is somehow transferring over to her weight gain ~lol~  And now she's using it as an excuse to get me to eat! Because, she says, if I start eating and gaining weight, she'll start losing weight. I just nod my head in agreement ;) 

Keeping you in positive thoughts and prayers for your surgery.

"T"

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

T,

Believe! She's right! lol.. tell her to prepare.. Once I get the kitchen back and can swallow myself more easily - I am on soup and salads.. it works.. fortunately!

And thanks, I am sure you too will be on your way up hill soon.. I'd say you are about 1 week from your first corner.. Where it starts to at least look better than it did a week ago.. Remember the week by week, month by month thing.. it's true.. in two months you will be feeling awesome by comparison. And you never really know when the good things occurred!

Kari

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

So good to hear such great news on Dan and glad everything is coming together for your surgery. I sure hope everything goes perfect for you. I am having a second surgery tomorrow at 3:00 so I may not be on again before your surgery but know I will be thinking about you. Hopfully the surgery wont keep us off very long !

Best wishes for you to feel better soon!

Peggy

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Peggy,

Please know that I am thinking and saying prayers for you tomorrow.

I will be looking forward to reading your first post!

And you are all tucked in! I have a special pocket just for you!

Hugs and prayers,

Kari

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

Thank you so much Kari ! I will be doing the same for you on Friday !

Peggy

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

My surgery went well . So much easier this time ! I woke up feeling like nothing had happened ! Haven't heard from the Biopsy yet but we are all pretty sure it was the same SCC as before. The Doctor thinks he got it all . I am hoping yours goes as well as mine did and I will be thinking and saying prayers for a great outcome tomorrow. Hugs

Peggy

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Peggy,

so glad to hear you had a good experience!  I'll be looking for your updates... 

Surgery for me is in just about 12 hours from now.. Can we say NERVOUS?  But in my heart I know I'll be fine.. Right after they knock me out! :)

be sure to take it easy, even if you feel good! 

Hugs,

Kari

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

The Nurse that called me the day before my surgery said if he were me he would take a Xanax about 2 minutes before midnite and so I did. I slept good and I didn't get to nervous until they started rolling me to surgery and then I don't remember getting there! We will all be waiting to hear from you.

Peggy

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Kari,

 

How did your surgery go, and did Dan have his?  I have been so flighty lately.  I got a new phone, the IPhone 5 and was figuring out how to use it, got back on here and then went to find it Sat. at my boyfriends cabin at Lake Wallenpaupak and realize i dropped the f!@$*% phone in my coffee for tube cooling down.  Now i am trying to go through insurance to replace it.  Basically I am rambling because it helps with the news from Wolfen.  In one of their responses it asked how you were and I paniced....please respond when you can so I know you and Dan are ok!

 

 

Love you guys,

 

Rachel

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

It's a secret society....

Unless you have had Turkey Neck, the tingling sensation of L'Hermett's, thrown in with no taste, no saliva and can speak fluently of PEG's, PET's, Secret Mask's, and of the secret sauce we all desire (Magic MouthWash)....

They have no idea there is a Secret Society ... The Clan of Abi-Normals...

JG

phrannie51's picture
phrannie51
Posts: 3819
Joined: Mar 2012

that Dan is doing so well and that he's gained 20 lbs.  I do the constant grazing thing, too....it's hard to remember to eat when you're not hungry.....so I'll forget, and then I realize I'm starving.  I think the weight comes back slow....or that's what's hapening to me...they keep telling me "we've got to get weight on you"...but I've gained 10 back, it's just taken months to do.  I didn't realize he was still on the TPN...how fast are they going to faze that out?

Tucking you in, Kari for your upcoming surgery....won't be long before you're putting together your salads and soups in your brand new kitchen (ooooo gawd, I'd LOVE to do that in my house!).

p

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Phrannie,

The TPN phase out plan is basically trying to skip one more night each week, he's going to try to get to every other day next week. And if he can maintain that weight, slip another off the list week by week. Dan has the aggressive goal and he's motivated.. just got to keep him from doing it so fast that he loses the gains.

And thanks for tucking me in! I am all ready now :)

Hugs,

Kari

debbiejeanne's picture
debbiejeanne
Posts: 2584
Joined: Jan 2010

keri, glad 2 hear u r both do'n well.  sending prayers and hugs for both.

God bless,

dj

hwt's picture
hwt
Posts: 1987
Joined: Jun 2012

I think my husband has gained close to every pound that I have lost but that's o.k. My sisters and sister-in-laws saw to it that he had plenty to eat while I was sick. Once I started to eat, he would finish my meals along with everything I thought I wanted but decided I didn't want or couldn't eat. He is getting uncomfortable and I try to stress that it's o.k. to throw it away or save it for another meal. I think it's part of the caregivers job to eat for us...after all, they do everything else for us!

Prayers for your surgery. We will be looking forward to hearing good results.

Candi  

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

Kari & Dan,

Glad your action item is finally getting here.  I know how bad waiting for the treatement can be.  Kari, we are all pulling for you and sending enough postitive energy that you should be able to feel it as they are wheeling you into the OR.

Dan, great job on the weight gain.  I'm having troubles in that area so any sucess I hear about there makes me know mine will be around the cornter.

Best of luck,

Joe

CivilMatt's picture
CivilMatt
Posts: 3060
Joined: May 2012

Kari,

It sound like Dan is doing well and just keeps getting better.  I hope he is ready to change jobs and wait on you.

Best of luck to both of you.

Matt

Duggie88's picture
Duggie88
Posts: 556
Joined: Feb 2010

Glad to hear Dan is doing well and I forsee you doing the same through your ordeal. I really enjoyed gaining most of my weight back by eating all the wrong things.

Thoughts and Prayers

      Jeff

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