Clicked the Switch

jcortney

Ok, in the last four days life has changed for me.  I went to see my Med Onc last Tuesday complaining of a real sore throat and food getting stuck every time on the right side of my throat.  Both he and my ENT are sure it is just swelling but it was tough for me to buy into and I just couldn't eat.  I'm on 6 insures a day and trying to get some more calories down without getting stuck and choaking.  He also told me that I might see improvement if I got a humidifier for my bedroom as I know I suck air all night.  So I get the humidifier and the next morning I don't hurt quite so bad.  Few days later, food is going down a bit smoother.  Here's the kicker folks.  Tonight, on my 15th wedding anniversary, I had musels in a red sauce, a piece of bread (yes BREAD) liberally doused in sauce and for the main course, Lamb Chops on a bed of mushroom risotto.  I didn't eat all that much, maybe 3/4 of one chop and about a cup of the risotto, but it is the closest to real food I've eaten in almost 9 months.  I actually had to get up and go to the mens room to get my emotions under control.  So, I have no idea if it's the "switch" on the humidifier or my throat just threw it's own "switch", but folks, I ate a meal tonight and I can't tell you what that means to me.

You guys that are struggling getting thorough treatment, I promise that there's a light at the end.

Here's to felling good and a great life for all of us.

Joe

metro22

super

Great to hear - and the Bread! I have a bakery right outside my door and long for the day I can swallow some again  - good going for you  - keep it up.

CivilMatt

flip the switch

Joe,

Make me up a doggy bag I am coming over. I didn’t know what the heck switch you was going to drop on us, but I am happy it was the food switch. It took 7 months for mine to reset (and I measure everybody’s food consumption to mine).

This whole trip, A to Z is an emotional one, count yourself “getting normal”.

Happy anniversary,

Matt

fishmanpa

Diversion....

Joe,

Congrats! The subject and the first couple of lines in your post threw me. I was thinking it was bad news. But then?... how awesome is that?! 

I needed to read your post as I've been struggling a bit. I'm encouraged Thank you for posting this and also for reminding me to turn on the humidifier!

Positive thoughts and prayers

"T"

donfoo

hey joe

HI Joe,

 

Thanks for keeping us up to date. The post tx period seems quite a treacherous place for many and many weeks pass by before signficant progress is made as close to the new "old normal" scenery. Once I got up to speed with the reality of this all I mentally altered the game rules to make end of tx the half time goal, leaving as much time on the other side post tx to allow for the rest of the game to play out. And even then, we know that is still a place from which further smaller incremental improvements are launched.

Glad you are eating solid again. I'll assume you got sufficient taste buds back to make that meal enjoyable. Eating without emough accurate taste falls short in my book. So does messed up texture sensation.

Just curious but what has been your experience throughout tx and post tx with pureed foods? I am finding I can tolerate finely chopped and pureed solid foods and find it is a really nice way to bridge real solid foods and purely liquid nutrition such as smoothies and shakes. don

jcortney

switched

Metro- Thanks.  Bread was/is a big one.  What I forgot to say in the first post was with dinner was probably a gallon of water

Matt- Pull the cord and see if the engine will start and come on over, I'll have the goods ready when you get here.

T - Keep on keepin on.  You are almost there.

Don- For some reason I never completely lost my taste buds.  They changed a couple of times so that foods tasted wrong or just plain bad, but never gone.  Now they are back to 90 % of original.  The doc tells me that's very unusual but I'm not complaining.  Saliva is only at 20% of original though so lots of water with food.  As to any foods before this, my rad field was really large (lymph nodes on both sides we really compromised) and the swelling inside my throat was pretty sever.  Anyway, it was really hard to swallow anything thicker than milk until a few weeks ago.

J.

Skiffin16

Time Is Our Friend...

In most cases time is our friend...

I know it's hard to take that, but in reality, I have seen that given enough time you're body will return to a good portion of the eway it was pre-treatment, both physically and mentally. Yes, sometimes with a few bumps, bruises, aches and pains.... But greatly improved from the intitial 4, 6, 8 or even 12 months post treatment...

and yes, I know... mentally I've always been a little Abi-Normal, LOL...

Congrats Joe, you're one step closer to being completely "Abi-Normal"...

JG

lorig01

Congratulations!!

I cried too when I started being able to eat.  I remember that Plato thought all emotion came from the stomach. I used to laugh at that until I could not eat for 7 months.  Once I started eating a flood of emotion was released.  I think that there is an emotional connection there that we miss when we cannot eat.  I think it transcends survival.. I am really happy for you. My depression really started lifting with gaining the ability to eat. I hope your eating experience just gets better and better!

HobbsDoggy

Chops and Bread

Wow, that is fantastic.  I can eat solid foods, but taste is still a major issue, most food has little taste or I get a hint of taste then it goes away.  I think I see very slow and very small improvements as time goes on.  I am so happy for you that you could both eat and taste.  Its great for you and gives us all hope.

 

phrannie51

You had me going there

for a minute, too....couldn't imagine what might have happened.  I am delighted you got some food down, at a nice dinner out and ended up with a duel celebration!  I know what you mean about getting so emotional about actually eating REAL food....LOL. 

I think I might try the humidifier.....not so much for swallowing, but for dry mouth in the summer.  We have very humid winters, but damn.....when it gets warm I end up having to carry the water bottle around with me.  That'd be semi ok if I didn't have a propensity for losing them constantly.

Congrats on the meal.....ain't it fun!!??

p

cureitall66

Wow!

That's great news Joe! Kreg is 6 months out and can barely do the breads. But, he's getting closer. He can eat most foods and has been able to for a few months now; with the exception of chicken and steak. Those two are a little tough to swallow. He still drinks a lot of water with every meal and carries a bottle with him everywhere he goes. I remember when he took his first drink of water and "swallowed" it just after tx and he broke down....so did I. It was such an accomplishment. I can't imagine what goes through you mind when you actually are able to get something back that you didn't have for a long time. Maybe you think you won't be able to get it back or just worried that it was going to be a really hard thing to do?!

Glad you got the experience so soon. Cheers to more of those accomplishments!

~C

Duggie88

Good News

Joe

 

Now theree is some good news to start the weekend. Whenever I think about getting my taste back I think about the things I didn't like tasting like the time my boss offered me a jellybean. I popped it in and started chewing and asked him what the hell flavor was it? He asked what it tasted like and I replied vomit and he said that was the name of it.

I never heard about the humidifier theory but it does make sense.

Back to eating "normal" food makes you appreciate it so much more.

Enjoy the weekend

      Jeff

Tim6003

Duggie88 said:

Good News

Joe

 

Now theree is some good news to start the weekend. Whenever I think about getting my taste back I think about the things I didn't like tasting like the time my boss offered me a jellybean. I popped it in and started chewing and asked him what the hell flavor was it? He asked what it tasted like and I replied vomit and he said that was the name of it.

I never heard about the humidifier theory but it does make sense.

Back to eating "normal" food makes you appreciate it so much more.

Enjoy the weekend

      Jeff

Great news!!!

I remember some time ago, but 7 or more months after my last rad posting on fb and telling my wife that I actually ate half of a PB&J sandwich....only later did I realize how excited I was that I had actually called my wife and posted such on fb...andI too got a bit emotional ...

Isn't it funny how we don't appreciate what seems like the small things  until they are taken away....

Thanks for the post!

Tim

peggylulu

Great news !

Joe, this is such great news for you and very encouraging for us . I hope your "switch' stays on and mine turns back on soon. I also bought a Humidifier and it does seem to help me some . Bread was never one of my favorite foods but now I would love to have a sandwich or a hamburger ! Thanks for the post !

Peggy

josh r.

Congratulations Joe!

I remember the fear and anger of not even being able swallow my saliva prior to treatment and that's nearly 22 years ago. I also remember the relief and joy when the simplest act of being able to swallow again began to return. I gratefully got on my knees and thanked my Higher Power and I do frequently still. I am thrilled for you, your family and your many friends here and elsewhere.

Enjoy and rejoice, joshr.

jcortney

Thanks

Thanks folks for all the great comments. 

I wanted to let you guys know that I'm pretty sure that the humidifier has been a big help.  Before, I would wake about every hour needing to drink some water.  After getting the humidifier it's now down to maybe three times a night.  I don't think that I've healed that much that fast and the improvement since getting the humidifier has been rather dramatic.  So, if you are in an area of low humidity you might want to give it a try.

J

rachel12yrsuv

Great for you Joe!  Although

Great for you Joe!  Although for different reasons i am still on peg, pureed bits i can handle, coffee and water.  I long for the day to excuse myself to deal with the emtion of tgat first successful meal!  Thanks for the inspirational story!

 

many more ahead for you, ps i also sleep with cool mist humidifier( life saver)!

Rachel