Where I am today - 21 months out

akbear49

Greetings All

Here I am, 21 months out since my last treatment.   Things have gone well for me, my taste has returned although I still don't care for ice cream or oreo cookies - a small price to pay.   My saliva has returned to nearly normal, swallowing doesn't hurt at all and hasn't for quite some time.   My beard started growing back and I have to shave again every other day.    My hands shook for quite some time but that also resolved itself as the tremors slowly decreased to nearly nothing now.

Life has resumed to almost normal for me, I've resumed sailing, geocaching and wood turning, there are days when I'm not hungry at all and days when I can't get enough to eat but my weight is good.   So good that the docs had been telling me "Gain weight Ed, gain weight" - this past December the docs told me "OK stop you've gained enough"   ;-)  

My purpose here is not to brag but to let those entering or going thru this that life will return to normal.    We went sailing in the British virgin Islands last November, picked November becasue the docs told me to be careful of the sun for quite a while after radiation treatments and 15 months out (November) seemed like a safe enough time

akbear49

Skiffin16

Congrats....

Throw in some fishing, and you are me..., LOL..

Give the Ice Cream 3 - 4 more months..., it took right at two years for me to regain the taste so I didn't lose it after one or two bites...

Best,

John

peggylulu

Ed

That is so wonderful for you and for my ears too !! Thank you so much for posting your great progress ! I am 5 &1/2 months out of Rads and I have days that I fear that I will be one of the unlucky ones that taste and saliva never comes back so I am loving your story !  Sorry about the Ice cream , that was one of my favorites too !

Thanks again,

Peggy

P.S. My husband also turns wood and makes things out of Mesquite wood !

Skiffin16

peggylulu said:

Ed

That is so wonderful for you and for my ears too !! Thank you so much for posting your great progress ! I am 5 &1/2 months out of Rads and I have days that I fear that I will be one of the unlucky ones that taste and saliva never comes back so I am loving your story !  Sorry about the Ice cream , that was one of my favorites too !

Thanks again,

Peggy

P.S. My husband also turns wood and makes things out of Mesquite wood !

Mesquite...

I make things with Mesquite also..., usually steaks, chops, chicken, LOL...mmmmm

JG

osmotar

Yeah

Always wonderfull to read posts like yours.

 

linda

peggylulu

Skiffin16 said:

Mesquite...

I make things with Mesquite also..., usually steaks, chops, chicken, LOL...mmmmm

JG

Lol

Yummm , That does sound  a LOT better than a Mesquite bowl or Vase, etc ! I can't wait until I can eat a Mesquite smoked steak ! My favorite meat !! My husband is also a great Bar-B-Que cook !

Peggy

Joanielo

Thank You For The Update!!

I am 4 months out from treatment so I really appreciate your update. You give me hope that things will continue to get better.

I thought that my taste buds would be back by now.  I worry that they will never come back.  Some things are tasting a little better but not 100%.  Many things still taste sour and bitter so I can't eat them at all. 

I think that my weight loss has stopped so that is a step in the right direction.

akbear49

Skiffin16 said:

Congrats....

Throw in some fishing, and you are me..., LOL..

Give the Ice Cream 3 - 4 more months..., it took right at two years for me to regain the taste so I didn't lose it after one or two bites...

Best,

John

fishing

I live in Alaska - its still snowing - but fishing season isn't far off 

2 years for ice cream - OK I can live with that

glad to hear you're doing well

Ed

akbear49

Skiffin16 said:

Mesquite...

I make things with Mesquite also..., usually steaks, chops, chicken, LOL...mmmmm

JG

Skiffn16 & Peggy

At my house we argue about using the wood - it is for burning or turning  - I tell people that we have some of the fanciest fire wood in Alaska.   

akbear49

osmotar said:

Yeah

Always wonderfull to read posts like yours.

 

linda

Linda

I had dropped off the boards for a while because the posts were getting dark but then I felt it was very important for everyone to hear the good news as well

Ed

akbear49

Joanielo said:

Thank You For The Update!!

I am 4 months out from treatment so I really appreciate your update. You give me hope that things will continue to get better.

I thought that my taste buds would be back by now.  I worry that they will never come back.  Some things are tasting a little better but not 100%.  Many things still taste sour and bitter so I can't eat them at all. 

I think that my weight loss has stopped so that is a step in the right direction.

Weight

I lost more weight after treatment than during - I wasn't too concerned as I knew I was going to get better.    

the first solid food I actually ate was one single olive and I cried when that happened because at that point I knew my taste was going to be OK 

Tim6003

akbear49 said:

Weight

I lost more weight after treatment than during - I wasn't too concerned as I knew I was going to get better.    

the first solid food I actually ate was one single olive and I cried when that happened because at that point I knew my taste was going to be OK 

Great post ...thank you...

Ed,

I am 15 months out and much of what you say is true for me too. How ironic your post tonight about oreos (and the discussion on ice cream).  I just had some oreos tonight hoping for a change, but still no good taste with them...and as for ice cream, my true vice before "c" ...no go for that either ..so hopefully the 2 year mark will bring some taste back.

Now, as for Alaska.  Since I was a kid (long before these reality shows on tv) I have wanted to move to Alaska.  In fact when I got married 15 years ago I told my wife (we then lived in North Florida) I wanted to move to Alaska.  Well, 15 years and 10 ten states later I am now closer, I live in central Idaho.    I just appear to be stuck at the moment, but it is beautiful here.

 

So thanks for your post.  You are correct, it does have it's dark time here on the board, but the way I see it is my experience may help others and if it does, that beats all.  I hope you will drop in often...and no way do I think of your post as a brag report....I see it is more light at the end of a long tunnel as most on here probably will....

Best,

Tim

 

 

phrannie51

Just like whining about feeling bad during treatment....

there is no such thing as "bragging" about doing great on this forum....neither word exists here.  A good report is good for all of us who have recently finished treatment, or those just starting (most having read on the internet about the dire outcomes)...You made my day a better day.

I keep trying to eat icecream....1/2 gallon every week as a test to see how it's doing in the taste department.  So far, not much....LOL, but I'm not giving up!

p 

CivilMatt

21 months good

Ed,

 

Good news travels fast. I heard someone was bragging over here and thought it was Skiffin.  Well I am happy to hear it is you and you are doing so well.

 

Ice –cream must be like Kryptonite to H&N members, I faithfully sample some on occasion with only marginal luck.

 

Live life,

 

Matt

Duggie88

Congrats Ed

I am 3 years out and life is good. I lost 92 lbs. and there is no way cancer is kicking my butt I tell my doctor I am gaining that back and then some. I do find it funny that I lost more weght than what I actually weighed in junior high school.

You will be surprised with the taste thing. Like I said I am three years out and have just recently started eating breakfast sausage again. After my treatment I couldn't stand the taste. Ice cream has always been one of my favorites and I continue to practice as much as I can. I remember when I first started eating it again it tasted real salty.

Before long you will be 42 months out with more noted changes.

Enjoy the day

      Jeff

fishmanpa

Needed that!

Nice post AK,

Being that I'm in the midst of hellfire as I write this, it was encouraging to hear about the light at the end of the tunnel. Congrats on meeting NED! I hear he's a great guy

"T"

akbear49

phrannie51 said:

Just like whining about feeling bad during treatment....

there is no such thing as "bragging" about doing great on this forum....neither word exists here.  A good report is good for all of us who have recently finished treatment, or those just starting (most having read on the internet about the dire outcomes)...You made my day a better day.

I keep trying to eat icecream....1/2 gallon every week as a test to see how it's doing in the taste department.  So far, not much....LOL, but I'm not giving up!

p 

Half gallon

1/2 gallon a day as an experiment - ya gotta love that idea   ;-)

akbear49

CivilMatt said:

21 months good

Ed,

 

Good news travels fast. I heard someone was bragging over here and thought it was Skiffin.  Well I am happy to hear it is you and you are doing so well.

 

Ice –cream must be like Kryptonite to H&N members, I faithfully sample some on occasion with only marginal luck.

 

Live life,

 

Matt

Matt

I keep trying too - perserverance will pay off one day   ;-)

Ed

akbear49

fishmanpa said:

Needed that!

Nice post AK,

Being that I'm in the midst of hellfire as I write this, it was encouraging to hear about the light at the end of the tunnel. Congrats on meeting NED! I hear he's a great guy

"T"

glad

Hey fishmanpa

hang in there buddy - the treatment sucks but there is life afterwards - it probably seems like an eternity now but it will get better

Ed

akbear49

Duggie88 said:

Congrats Ed

I am 3 years out and life is good. I lost 92 lbs. and there is no way cancer is kicking my butt I tell my doctor I am gaining that back and then some. I do find it funny that I lost more weght than what I actually weighed in junior high school.

You will be surprised with the taste thing. Like I said I am three years out and have just recently started eating breakfast sausage again. After my treatment I couldn't stand the taste. Ice cream has always been one of my favorites and I continue to practice as much as I can. I remember when I first started eating it again it tasted real salty.

Before long you will be 42 months out with more noted changes.

Enjoy the day

      Jeff

Duggie88

funny - all I tasted was salt for months on end - no matter what I did the heavy salt taste overwhelmed everything.   I told my wife i'd never use salt again once I got better.  Here I am now, using salt again.   

I will enjoy the day and the tomorrow

Ed 

akbear49

Tim6003 said:

Great post ...thank you...

Ed,

I am 15 months out and much of what you say is true for me too. How ironic your post tonight about oreos (and the discussion on ice cream).  I just had some oreos tonight hoping for a change, but still no good taste with them...and as for ice cream, my true vice before "c" ...no go for that either ..so hopefully the 2 year mark will bring some taste back.

Now, as for Alaska.  Since I was a kid (long before these reality shows on tv) I have wanted to move to Alaska.  In fact when I got married 15 years ago I told my wife (we then lived in North Florida) I wanted to move to Alaska.  Well, 15 years and 10 ten states later I am now closer, I live in central Idaho.    I just appear to be stuck at the moment, but it is beautiful here.

 

So thanks for your post.  You are correct, it does have it's dark time here on the board, but the way I see it is my experience may help others and if it does, that beats all.  I hope you will drop in often...and no way do I think of your post as a brag report....I see it is more light at the end of a long tunnel as most on here probably will....

Best,

Tim

 

 

Alaska

Hey Tim

We moved here 23 years ago from Staten island via Pennsylvania - really glad we did.   ironic that you are from Florida, we are heading that way in a couple of weeks for fun in the sun at Disney and a week long cruise.   Cruises are floating buffets - I get to try all kinds of foods there including ice cream every day.   I'm trying my best to restart that taste bud   ;-)

Ed