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Where I am today - 21 months out

akbear49's picture
akbear49
Posts: 50
Joined: Jul 2011

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's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

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

akbear49's picture
akbear49
Posts: 50
Joined: Jul 2011

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

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

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's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

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

JG

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

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 !

PeggyLaughing

akbear49's picture
akbear49
Posts: 50
Joined: Jul 2011

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.   

osmotar's picture
osmotar
Posts: 951
Joined: Jul 2011

Always wonderfull to read posts like yours.

 

linda

akbear49's picture
akbear49
Posts: 50
Joined: Jul 2011

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

Ruben and Jude's picture
Ruben and Jude
Posts: 152
Joined: Apr 2013

Hi Ed... my husband and I are newbies... I came here to hear the good news, so PLEASE keep posting. I've been reading your posts to my husband and we are both not only encouraged, but entertained!

THANK YOU.

God Bless.

Ruben and Jude

akbear49's picture
akbear49
Posts: 50
Joined: Jul 2011

Newbies - welcome to the forums - I only wish I had found this while I was going thru this fun filled experience - don't be afraid to ask anything - write down your questions and then later the answers you get - this is over whelming and you will easily forget what was said.

My English major daughter insisted I keep a journal of my experiences - it proved invaluable to me as I was able to review what I had done before and after the chemo sessions - what worked for me and how long it lasted - it made it a little easier when I was able to look back and see how I handled things

I also took my anti nausea meds ahead of symptoms - the docs had prescribed 2 different kinds - one every 8 hour, the other every 12 hours - screw 'em I took both every 8 hours and they made me sleepy - so I turned on my music and napped.   I contacted my docs and told them what I was doing - I didn't want to abuse drugs - they said "what ever works Ed".   I'm not going to lie to you and say it made me feel better but I never once vomited and i believe that saved my throat and ultimately my ability to swallow.

hang in there

Ed

Joanielo's picture
Joanielo
Posts: 43
Joined: Oct 2012

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's picture
akbear49
Posts: 50
Joined: Jul 2011

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's picture
Tim6003
Posts: 1490
Joined: Nov 2011

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.  Sealed  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

 

 

akbear49's picture
akbear49
Posts: 50
Joined: Jul 2011

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

phrannie51's picture
phrannie51
Posts: 3617
Joined: Mar 2012

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!

akbear49's picture
akbear49
Posts: 50
Joined: Jul 2011

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

CivilMatt's picture
CivilMatt
Posts: 2825
Joined: May 2012

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

akbear49's picture
akbear49
Posts: 50
Joined: Jul 2011

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

Ed

Duggie88's picture
Duggie88
Posts: 524
Joined: Feb 2010

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

akbear49's picture
akbear49
Posts: 50
Joined: Jul 2011

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 

Roar's picture
Roar
Posts: 237
Joined: Mar 2013

4 months out and all I taste is salt- I am able to eat- I had a waffle this morning with fresh strawberries and breakfast sausage- I was actually able to taste everything somewhat- but the salty taste drives me nits- glad to hear it gets better- 

akbear49's picture
akbear49
Posts: 50
Joined: Jul 2011

at my English major daughter's insistence I kept a journal of my cancer experience - I just re-read it and found that my last salty taste entry was about now for you.    All of a sudden I made no more comments about that endless salty taste in my mouth.  

good luck.

Ed 

fishmanpa's picture
fishmanpa
Posts: 1103
Joined: Jan 2013

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's picture
akbear49
Posts: 50
Joined: Jul 2011

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

hwt's picture
hwt
Posts: 1832
Joined: Jun 2012

Thanks for the encouraging update. I am 11 months post rads/chemo. Currently, vacationing in Sand Key,FL. and have had coconut ice cream with hot fudge every single night. Last night was an exception with coconut cheesecake and pineapple sauce. Unfortunately, I was only able to eat  a loaded baked potato for dinner and a few bites of steak but am making up for that in the dessert area. I started with shakes and worked my way up to straight ice cream. I was anxious about the sun but used sunscreen on my face and wore a hat as instructed. Managed a tan as doctor told me they only radiated the target area and the remainder of my body was not affected. I'm only on-line today as it's raining but had beautiful sunny skies and temps in mid 80s all week. Hate to leave your paradise here, John. I forgot how beautiful it is!   To Fishmanpa and others in the midst of tx, it really does get better. I envy those having an ice cream cone but I'm thankful I can have mine in a cup. I envy those having a sandwich but I am thankful I can eat one with a knife and fork. I look at people with other disabilities now and am thankful for the abilities and opportunities that I do have. 

akbear49's picture
akbear49
Posts: 50
Joined: Jul 2011

ice cream - I do try my best on that front - still not that good but getting there

We were in Florida at Disney in Nov 2011, that was 4 months after my last treatment in july 2011 - you should have seen the hat and scarf I wore to protect myself against the sun - I got some real odd looks   ;-) - but we all had fun

take care

Ed

 

debbiejeanne's picture
debbiejeanne
Posts: 2259
Joined: Jan 2010

ed, we're always very happy to hear such a wonderful report.  glad things have just about returned to normal for you.  funny you mention oreos b/c they're one of the things i can eat...lol.  i'm so glad you are doing such great activities!  you really have taken your life back and showed cancer who's in charge.  good for you!!!  keep up the great job and keep us posted on the ice cream.  hope it won't be too much longer for you.   

ps, thanks for the new smilie john!!

God bless,

debbiejeanne

akbear49's picture
akbear49
Posts: 50
Joined: Jul 2011

thanx debbiejeanne

will do with the ice cream updates.   My wife and I like to travel - we have a DQ rule ( Dairy Queen ) whenever we see a DQ on our side of the road after lunch we stop for an ice cream.   That rule was put into effect on our recent trip to Texas - we were almost out of gas, running on empty, didn't know where the next gas station was, getting a little worried and there on the horizon was a DQ   ;-).     I can take or leave ice cream now but ...   ice cream it was. 

ironically a gas station was literally around the corner behind some trees

Ed 

alaskanjan's picture
alaskanjan
Posts: 42
Joined: Apr 2012

Just wanted to sign in again, it has been a long time.  My husband finished treatment in Feb. 2012 for BOT cancer.  He is not a patient man and it has been a challenge just to get through the first year.  Even though his primary physician told him, upon completion of chemoradiation, that he would not just go home and get back to normal...my husband didn't believe that.  The year has been filled with some setbacks and many days of getting up feeling pretty darn good that rapidly deteriorated to not so darned good but much progress has been made.  He was not the most compliant patient...refused a feeding tube, thought the exercises for swollowing applied to anyone but him, etc. but, in the long run I am just so happy that he has had a years worth of every three months checks that were NED and will have his first 6 month one in June.  Gradually his salivary glands have began functioning...to the point that he rarely uses the Biotene dry mouth spray now, and his taste is returning.  He has always loved sweets, and, thank goodness that taste returned first, he loves his ice cream!  About a month ago he tasted steak again and said that it did have some taste...not quite like he remembered but at least it did not taste bad.  So, even though every little blip on the screen, like a stiff neck, a twinge in his left hear, the feeling of fatigue, cough, etc., etc, scares us, so much progress has been made in one year. We have a busy summer planned and I know in my heart that we will find the strength to deal with whatever comes our way.  It has been a wake up call to us to do the things we have dreamed of now, while we can, because there is no guarantee to anyone about tomorrow.  Just got home last Sunday from a cruise through the Panama Canal and it was exceedingly interesting!  Now akbear49, where the heck in Alaska do you live?  We are 30 miles South of Fairbanks. 

akbear49's picture
akbear49
Posts: 50
Joined: Jul 2011

alaskanjan

I know the feeling well, every little twinge becomes an aww sh-t moment - my sister was treated for colon cancer and she warned me of that feeling.   I'm doing well too, my taste and saliva are almost normal.   No feeding tube for me either although 2 of my 3 docs strongly recommended it.   Turns out it was a good decision for me but then everyone is different.   We, too, just back last Sunday from cruise to Cozumel & Belize - gotta live life to its fullest.   I understand the comment about tomorrow - we got home on Easter Sunday, my older brother had been diagnosed with advanced prostate cancer in July 2011, he passed away April 1st.

We live in Eagle River and look forward to a summer of fun

and now for a commercial - I'm reading this book called Healing Spices, it was recommended to me by Dr Lynn Freeman at Alaska Regional Hospital after I had finished my radiation /chemo treatments - there are spices that kill cancer cells - kill them - not many for H&N cancers but there are some - and its not some Mexican Mayan exotic make believe fad stuff - it is backed up by research at MD Anderson, Johns Hopkins, Michigan State and others.     If you get the chance, try and make one of her lectures at Alaska Regional - really good information - not only for cancer patients but for everyone.   I brought my wife and 2 daughters with me to her last lecture

Ed  

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