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Lookin' Like A Bunch of NEDs Out There!!!

tuffenuff's picture
Posts: 277
Joined: May 2012

So happy to see so much good news! Hoping I can add to the joy next week! I was originally scheduled for PET this week but asked doc to give me one more week to cool down. So I get PET next Wednesday and results on Friday.

This whole process is so bizarre. One one hand, I cannot imagine anything other than living a long healthy life. I mean literally I cannot imagine it. I have trips planned for October, April and May. I have started back to school (enrolled the day after I finished rads lol). We are almost finished building our house and I already sent out invitations for a Halloween party. My creative juices have even started flowing again. My stamina isn't great and I spend most of my day eating, eating, eating but mostly it's just back to business as usual.

Then on the other hand I worry that my treatment and recovery has been too easy so how effective could it have been?

I guess that's what cancer does...

Here's my progress report:

-I have about 20% of my taste back I guess. The first 2 or 3 bites taste almost normal then it drops wayyyyy off. But it's enough to make it tolerable.
-I have gone out to eat twice. I find that salads with ranch dressing are a safe bet. Also the spinach dip stuff with tortilla chips works for me. (Yes, tortilla chips.I never would have thought that 6 weeks out I would be able to eat tortilla chips.)
-Seems like I am the exact opposite of what everyone else experiences. Tomatoes don't bother me, fresh or processed like in chefboyardee or whatnot). Can't eat bananas because they burn but canned mandarin oranges dont bother me. Meat tastes really good.
-My favorite thing to eat so far is Stouffers Pepper Steak or Ball Park Angus hot dog on white bread with mustard and ketchup (take off crust or its too much bread but I think the bread is what keeps the condiments from burning.) Also, salad. Lettuce, tomato, cucumber, carrots, bacon bits, ranch dressing. I want to try the yellow bell pepper but they are a little expensive to try just yet.
-Still can't taste anything sweet.
-My water stared tasting funny again and it lasted about a week but I found that Crystal Light peach tea is pretty good.
-I no longer have the spit that never disconnects from your lip.
-I no longer spit out massive quantities of white foam. I had nicknamed myself The Foaminator for a couple weeks.
-I have the wrinkles of a 70 year old smoker on my chin now.
-Today is day 12 of taking nothing in my feeding tube other than water to flush it!

Probably TMI, as usual, but I feel like I'm doing pretty good and it might be helpful for some of the new kids on the block to see what's up.

Wishing everyone a NED day and the best of everything!

Posts: 660
Joined: Mar 2012

Ditto your comments. I to have my PET scan on Oct 3rd, I am both looking forward to it and scared to know. We all never wanted to be here in the 1st place but once here and after going thru tx, we just want to know it led to NED thus making it worth it and teaching us new things along the way. I have also been blessed just being 5 weeks out with the ability to get around and start eating things that I truly missed over the last 3 months. But also like you I just want to know that the cancer is gone, I know no matter what I will have to go on but what sweet words NED would be. I to have started trying different foods, ironically I my wife and family were big Ranch Dressing eaters, I never could understand how they put Ranch on many different foods, now I find Im a Ranch eater, it taste good and moistens the chicken or what ever meat I try so who would have guessed, maybe its part of my new normal.... Prayers to you on your PET, hope we both can join the NED club.

phrannie51's picture
Posts: 4705
Joined: Mar 2012

...but want to thank you for that long long list of things you are eating. Every SINGLE thing there sounds totally delicious to me, and it gives me a place to start when these last mouth sores give up their hold. I'll be using your list :).

What is it about radiation and the aging of one's mouth area? The same thing happened to me...at first the skin was tough and flakey...but it's smoothed out to a sea of wrinkles...

Sending positive vibes on your PET....mine is so far off yet, I'm not even thinking about it.


tuffenuff's picture
Posts: 277
Joined: May 2012

That post turned out way longer than I intended lol.

The wrinkles I'm sure are because the rad completely destroys the collagen in that area. It would be no big deal if it happened over time but this sudden aging of my chin is freaky looking to me. Maybe I will celebrate one year NED with a mid-facelift!

Posts: 1914
Joined: May 2012

Attitude has alot to do with recovery from anything. And kid you came on swinging from the get go. I am praying you reach Ned forever. And honey don't worry on the wrinkles...you've earned each and everyone of them, but cool idea on the celebrating face lift for the one yr. ned ! Katie

Crazymom's picture
Posts: 339
Joined: Nov 2011

I have a lot more wrinkles than I used to have Ann

tuffenuff's picture
Posts: 277
Joined: May 2012

I honestly think my scan is a little early but being that I was a hair away from 4b, I guess you can't be too careful.

BrianKrashpad's picture
Posts: 188
Joined: Jan 2011

To Tuff and Ditto both!

Be well!

CivilMatt's picture
Posts: 4543
Joined: May 2012

Hi Cindy,

Wow, did the radiation do that to your hair? Nice job, looks good.

You are progressing quickly. If you don’t mind could I have a detailed list of your activities because what ever you are doing, you are doing it right.

Always nice to hear from you, keep healing and looking forward to your clean NED filled scans.



tuffenuff's picture
Posts: 277
Joined: May 2012

I seriously think I just got lucky. I've always healed quickly and I was praying for the same with all of this. I am laying in bed typing this and just realized I dont even have dry mouth. It doesn't wake me up at night or anything. Like I said, I think I just got lucky and I wish everyone could have the same experience. I told my niece today that even if this is the best I'm ever going to be I could live a happy life. Just so it's a really loooooooong one. ;o)

Mikemetz's picture
Posts: 405
Joined: Nov 2011

When I turned the corner to know that I would survive the same ordeal you have gone through, I started a "Cancer Revenge List." It was all the things I wanted to get back to doing that cancer had taken from my life. Make your own list, but for me I have checked all of them off except getting back to SCUBA diving. That will happen, but not just yet.

My list started with going for walks with my wife, eating my favorite foods (what I could handle), exercising, getting back to teaching, and traveling to see my friends and family. Pick your your own list, but know that you can get back a lot of your pre-cancer life, and enjoy the "new normal" as a cancer survivor.


Tim6003's picture
Posts: 1512
Joined: Nov 2011

Just kidding....

...delighted your post was as is ..I enjoy reading such success and I know you and Ditto are going to get great results from your scans....the two of you are "tuff" ... :)



tuffenuff's picture
Posts: 277
Joined: May 2012

I already started acting on my list! Enrolled back in school the day after I finished treatment, 5 year anniversary trip to the Blue Ridge mountains in October, San Francisco in April AND I AM SO EXCITED trip to Italy in May to paint at an art school that is in a little village that doesn't allow cars in even!!!

That's the big stuff but I'm also looking forward to helping my husband with his business and riding bikes with my mom. I feel for her the most. Other than just having so much my soul is driven to do, my primary motivation is to beat this crap for my mom. We lost my sister at the age of 10 to a rare form of anemia. I can't bear the thought of her heart breaking again.

Pam M's picture
Pam M
Posts: 2196
Joined: Nov 2009

Looking forward to you joining Club NED.

Greg53's picture
Posts: 849
Joined: Apr 2010


Like your new pic! And I definitely relate to the chin-wrinkles. I think you're next in line for a NED. First new term I heard here in awhile - Foaminator - love it.

Positive thoughts headed at ya!


Tonsil Dad's picture
Tonsil Dad
Posts: 489
Joined: Dec 2011

Praying for NED for Tuffenuff & Ditto on their upcoming scans.
You both have a fantastic attitude and a lust for life and God will
show his mercy on you both.

If you believe, you will receive whatever you ask for in prayer. Matthew 21:22

God bless
Tonsil dad,


Billie67's picture
Posts: 898
Joined: Jul 2012

Me too,!!!! Can't say it's my favorite part of the side effects but if in 2 weeks my PET shows NED maybe I'll reward myself with some collagen :-)

Barbara B
Posts: 40
Joined: Sep 2012

Sending lots of happy thoughts and prayers to tuff, ditto and Billie! Can't wait to welcome everyone into the NED club.

And as for the wrinkles, aren't they suppose to give you character? At least that's what my husband says. =)


tuffenuff's picture
Posts: 277
Joined: May 2012

That's true but I think most people are of the opinion that I already have a little too much character already lol!

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