Where I am today - 21 months out

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  • hwt
    hwt Member Posts: 2,328 Member
    #22
    akbear49 said:

    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

    Ed

    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. 

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #23
    ed, we're always very happy

    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.    image

    ps, thanks for the new smilie john!!

    God bless,

    debbiejeanne

  • akbear49
    akbear49 Member Posts: 51
    #24
    hwt said:

    Ed

    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. 

    Woo Hoo

    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

     

  • Roar
    Roar Member Posts: 269 Member
    #25
    akbear49 said:

    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 

    4 months out

    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- 

  • Ruben and Jude
    Ruben and Jude Member Posts: 155
    #26
    akbear49 said:

    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

    We're newbies

    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
    akbear49 Member Posts: 51
    #27
    Roar said:

    4 months out

    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- 

    Roar

    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 

  • akbear49
    akbear49 Member Posts: 51
    #28
    debbiejeanne said:

    ed, we're always very happy

    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.    image

    ps, thanks for the new smilie john!!

    God bless,

    debbiejeanne

    ice cream

    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 

  • akbear49
    akbear49 Member Posts: 51
    #29
    Ruben and Jude said:

    We're newbies

    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

    newbies

    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

  • alaskanjan
    alaskanjan Member Posts: 42
    #30
    Alaskan Connection

    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
    akbear49 Member Posts: 51
    #31
    alaskanjan said:

    Alaskan Connection

    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. 

    Every blip

    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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