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The Good, The Bad and The Ugly

jcortney's picture
jcortney
Posts: 423
Joined: Sep 2012

First the good.  I had a test yesterday that shows in real time what happens when you swallow.  If anything leaks into the lungs it is instantly apparent.  99.9% of what I swallowed wound up in my stomach.  That's a real improvement over the last time and they cleared me to have soups (pureed) and semi-solids like yogurt, jello, pudding, etc.  Our goal is for me to be self-sufficient (no feeding tube) within 30 days.

 

The bad.  I have all of a sudden started draining from my sinuses an amazing amount of flem (for lack of a better word).  Might be mucous but is much thicker consistency than what i dealt with before.  Anyway, it is just filling my throat and by extension my stomach from swallowing it and causing nausea and choking.  Not fun.

 

The Ugly.  My sense of smell has gotten incredibly acute.  Every bad odor you can think of is multiplied by 10X.  I can't get near a trash can.  Jennifer made a smoothie this morning using greens of some kind for her "healthy breakfast" and it made me gag from 10 feet away.  I don't know if it works on good smells yet as I haven't come across any but the bad, well hopefully this can't last.

 

Well that's it boys and girls.  More to follow.

 

J.

hwt's picture
hwt
Posts: 1950
Joined: Jun 2012

Joe,

Great news on the swallow test! Can't help with "the bad" as I dodged a bullet when it came to mucous. As for the ugly, are you sure you aren't pregnant?Cool Actually, the smell of alcahol stands out to me, even though I'm not much of a drinker. Hopefully, the bad smells will pass.

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

Joe,

Great news! I had my second swallow study yesterday too, and nothing went in my wind pipe, eithher it went in stomach or little had to be coughed then swallowed. Not graduated yet, but my light at the end of tunnel is shinning bright. While your eating real food, like chocolate pudding, toast one to me still fighting!

My sense of smell has been acute since treatment all those yrs ago, however since peg in Dec I would say stronger, although I am not gagging like you, I just pick it up faster then anyone else, like when pilot light goes out on fireplace, I can smell the gas in an instant.

I am just soooooooooooo happy for you, take it slow and enjoy what we once took for granted. You gave me even more hope that maybe in several months I might be where you are now!

Congrats Joe!

Rachel

phrannie51's picture
phrannie51
Posts: 3743
Joined: Mar 2012

Won't be long before you get to chuck that tube in the garbage can (that little apparatus being gone is up there with getting to haul your mask home never to wear it again)....

I dodged the bullet on the mucous, too....but from hearing from everybody else I know it's a misery.  Did you try the Musinex again?  Vectroama just posted that he used Wal-Act he got from Walmart....said it worked great.

http://csn.cancer.org/node/256388

As for bionic smell......oh gawd yes!  I told my husband that when we were outside, I could put my German Shepherd to shame.....any lost babies?  Let me sniff them out.....I swore I could find the trail and follow it.

p

CivilMatt's picture
CivilMatt
Posts: 2979
Joined: May 2012

Joe,

 

Good results on the swallow test, everything is flowing in the right direction.

 

We’ve talked about Bionic-Nose on here before.  Many of us had it.  I am back to standard nose now; I can’t help you or Phrannie sniff up anything.

 

Matt

Grandmax4's picture
Grandmax4
Posts: 585
Joined: Dec 2011

Mashed potatoes with lots of gravy, yogurt are good soft foods too...keep doing the exercises, soon, you'll be swallowing your new way and not even thinking about it..took me a year, but I eat anything now...

Oh Lord, the mucus, try a nettie pot, that helps

 

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

a sinus infection.  If the drainage is yellowish or greenish, it's a good possibility.  Right now, I am on 2antibiotics to get rid of a sinus infection.  Before I started the meds, I was getting a foul odor at times coming from the infection.

jcortney's picture
jcortney
Posts: 423
Joined: Sep 2012

It is yellowish.  I'll call the Doc tomorrow.

J.

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

When I was on soft foods (still am to a degree), Marcia made a wonderful combination of home made mashed potatoes, scambled eggs and cheese, lots of butter and whole milk. It's become a favorite of mine and probably will remain so long after teatment :) 

"T"

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

Joe,

So happy to hear that you passed the test.. that had to be so frustrating not to be able to enjoy even a little food by mouth. So glad you are no longer on the side lines, and back in the game!

Wow, hope Dan skips the smell sensitivity! Benedryl might just be what you need to dry up that mucous. Dan just took a bendryk/steroid combo for 6 days and it's amazing how it took down his swelling and opened his throat up. He ate bagel! And lots of food since, You also might want to have the doctor take a look and make sure there's no sinus infection.

Keep us posted and keep doing so well!

Kari

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

My five kids range in age from 2 - 14 ...TRUST me I can smell the four boys and even my daughter before they get off the bus on the way home from school.  And my 2 year old who is almost, but not quite out of diaper yet....oh boy can I smell that right out the gate!!!  My wife actually gets a little freaked out about my sense of smell.... :) 

 

Best,

Tim

cureitall66's picture
cureitall66
Posts: 863
Joined: Aug 2012

First, glad to hear the swallowing test went well.

Second, the sinus drainage is very familiar. Kreg had the never ending, thick drainage coming out of his nose...sometimes it would need to have a helping hand coming out or sometimes get runny and just come out unexpectedly. This was all along with the heavy mucus in the mouth. It will get better... Laughing

Third, the SMELL! Wow...Kreg complained of the yucky smells..including a smell of sulfer all the time. shortly after tx stopped, it disappeared.

Hang in there....

~C

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

Oh, whew.....

I thought this was a thread about Cris, Matt and me..., LOL...

Hang in there bro..., maybe the sinus fluids are just a start for your saliva kicking in...

Best,

John

cureitall66's picture
cureitall66
Posts: 863
Joined: Aug 2012

John....I just need to ask....Do you have the names in the same order that your title is? ...just wonderin'...LOL Tongue Out

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

Yes, I thought carefully so as not to offend.... (matt), LOL...

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