My first post (Today is a gift)

ralysport
ralysport Member Posts: 4
in Head and Neck Cancer #1

Not sure how or why i ended up here today but i truly believe everything happens for a reason.  I just had my 12 year anniversary surviving throat cancer :-)  I forget all the fun technical terms about my cancer but it was advanced.  Stage4, Radical neck dissection, tumor left tonsil, golf ball sized lump in my left lymph nodes.  20 hour surgery to include cutting through my jaw and opening me up.  38 radiation treatments no Chemo.  lost 95 lb. in 6 months.  tough times that made me a better person today.  I was 40 years old with my son and family supporting me.  My first reaction when i found out was (Thank god it’s me and not one of my family members)  Over the last 12 years there have been many challenges.  No Saliva is a big one and i live on Xylitol mints for helping keep moisture in my mouth.  Spent over 20K on my teeth and know I’m going to lose that battle but I’m not ready yet.  My favorite food is "Viet PHO" OMG i love it....  Every bite has to have moisture and twice i almost choked to death....  Thankfully both times someone was near to himelick me.  I'm suffering from some type of acid reflux that has worsened over the past 3-years.  Today i am 52 years and loving life.  I believe i was spared and it’s to help shape the lives of my grandkids. I like to think i have an advantage over most people.  Others do not get to see life like i do.  With that said if you were recently diagnosed or in recovery it’s tough to see 12 years down the road.  i was hoping for 5 years at the time.  Tough to be positive when you have to go through so much and your mind has consumed you.  Every day you wake up is a beautiful day.  Today is a gift and you must find something good about it.  There are good days and there are better days.  in 52 years I’ve only had a few bad days and the funny part is they are now my "Best" days" Kuz i made it through them.  I lost a good friend last week and am going to his funeral Saturday.  I will celebrate his life and be thankful for our time together.  Sometimes Cancer is harder on friends and family than the one who suffers the disease.  With that said i wanted to send some hope, strength and respect to those who are currently in the fight. (That includes the loved ones supporting them)  God bless you all...... 

Comments

  • Billie67
    Billie67 Member Posts: 898
    #2
    Wow
    What a nice post! Welcome to this site, we ALWAYS love to hear success stories like this.
    I'm sorry about your side effects, saliva and teeth. I'm trying hard to take the best care of my teeth that I can, I started out with healthy teeth so hopefully that will be in my favor. As far as saliva goes (or doesn't go in your case), dang it! I sure wish that you had said you'd gotten most of that back.
    All that being said, your outlook is amazing! I'm only 9 months out and I hope in 12 years I can be as encouraging to others as you are to us!

    I'm sorry to hear of the passing of your friend and I hope Saturday will be filled with peace and love to help celebrate his life.

    Welcome again and thanks again for joining us and sharing your good survival story.
    Billie
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #3
    Billie67 said:

    Wow
    What a nice post! Welcome to this site, we ALWAYS love to hear success stories like this.
    I'm sorry about your side effects, saliva and teeth. I'm trying hard to take the best care of my teeth that I can, I started out with healthy teeth so hopefully that will be in my favor. As far as saliva goes (or doesn't go in your case), dang it! I sure wish that you had said you'd gotten most of that back.
    All that being said, your outlook is amazing! I'm only 9 months out and I hope in 12 years I can be as encouraging to others as you are to us!

    I'm sorry to hear of the passing of your friend and I hope Saturday will be filled with peace and love to help celebrate his life.

    Welcome again and thanks again for joining us and sharing your good survival story.
    Billie

    Thank you Rally!!!!

    What a terrific post ...for all but I would imagine especially for those most recently dx and those not too far out from treatments.

    I hope you will chime in now and then and post your 12 years and your outlook, if only just as a reminder to those facing the beast and wodering if there is light at the end of the tunnel.

    Thank you again for posting such a post!

    Tim

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #4
    nice

    Ralysport,

     

    Great post, great outlook.  It sounds like you have conquered the mental aspect of dealing with cancer and all its side effects.  You give me incentive to try a little harder to get out and enjoy life.

     

    Wish you continued success,

     

    Matt

  • phrannie51
    phrannie51 Member Posts: 4,716
    #5
    All I can say is WOW....

    and thank you for posting.  I'm just new to the recovery part of this, too....7 months out of treatment, but I too want to be a person who can get 12 years out, and see everyday as a gift.  Emotionally, recovery for me is harder than having the disease sometimes....I didn't know I had a capability of being so neurotic....but it do!!!....LOL.  Your post lifted me up for this day (my day is starting at midnight, this week)....Thank you.

    12 years....again......WOW....I can live without saliva...I can live with only a bit of taste....minor annoyances.  I've just got to get passed the "waiting for the shoe to drop" feeling that trips me up on this little hiway of life.

    I wanna be like YOU!! Smile

    p 

  • boardwalkgirl
    boardwalkgirl Member Posts: 269
    #6
    Thanks for the positive post.

    Thanks for the positive post. It has to give us that are early in this journey hope for the future. I am like Phrannie, in that I have struggled more since I finished treatment than I did during. I think I was so busy and tired then that my mind didn't think of the future, only getting thru each day, one day at a time. Since treatment is over and as I have progressed slowly, my peace of mind has disappeared. I have struggled this winter with depression and anxiety. But I went to my ENT yesterday and he gave me an all clear from the exam which made me feel much better. Thanks again for inspiring us.

  • Grandmax4
    Grandmax4 Member Posts: 723
    #7
    Your post

    is so refreshing, this sunny,cold morning in Ohio. I keep thinking there's something wrong with me, that I don't worry about a reoccurance. I'm 1 year, 5 months out from de vinci robotic surgery that removed my epiglottis...I try to make the most of each day, and deal with few after effects...feeling of mucus in my throat is the one that bothers me the most.

    Again, thank you for posting..I know you've lifted the spirit of many

  • osmotar
    osmotar Member Posts: 1,006
    #8
    Inspiring

    Great post , thank you for sharing.

     

    linda

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #9
    Grandmax4 said:

    Your post

    is so refreshing, this sunny,cold morning in Ohio. I keep thinking there's something wrong with me, that I don't worry about a reoccurance. I'm 1 year, 5 months out from de vinci robotic surgery that removed my epiglottis...I try to make the most of each day, and deal with few after effects...feeling of mucus in my throat is the one that bothers me the most.

    Again, thank you for posting..I know you've lifted the spirit of many

    grandmax4, what part of

    grandmax4, what part of ohio?  cincinnati here.

    God bless,

    deb

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #10
    your attitude is great.  i

    your attitude is great.  i haven't reached that point yet.  yes, i'm thankful but i still get down quite a bit due to trake.  it is really a bother.  i can't wait until i'm 12 years post trmnts.  your post reminds me that even tho i have bad days at least i have "days".  thank you for the reminder.

    God bless,

    Deb

  • cureitall66
    cureitall66 Member Posts: 913
    #11
    Inspiration and Tears.....

    Inspiration and tears are what I got out of your post. You are a postive person ....great to hear! Thank You so much for sharing your story with us. As a Caregiver to a Newbie...this is very encouraging...even if the road is rough. My loved one was SCC BOT, Stage IV, HPV+16, 2 lymph nodes involved. No surgery, Chemo and Rads.

    We are grateful for people like you who find the urge to come visit us and share some inspiration. I hope someday to be able to repay the folks that have stuck around here giving us hope and to also help the new ones that come on here.

    God Bless,

    ~C

     

  • Grandmax4
    Grandmax4 Member Posts: 723
    #12
    debbiejeanne said:

    grandmax4, what part of

    grandmax4, what part of ohio?  cincinnati here.

    God bless,

    deb

    We live

    in Green Camp township, about 50 miles north of Columbus...

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #13
    Welcome RS...

    Great bunch of folks here....

    Glad to see you made it through and are still around kicking...

    I think a lot of us have a new found appreciation of life...

    What was once small, is now huge... What was once huge, pretty low on the totem pole these days. People you thought were important, not so much. Ones you didn't pay attention to, now consume you...

    It's a tough road, but in a lot of ways, I'm a better person for having had cancer...

    In my fourth year post Tx, and like you, loving life...

    An you are right and it's been said on here many times... The disease is much harder on our family and care givers than it is on us for the most part...

    Best ~ John

  • peggylulu
    peggylulu Member Posts: 375
    #14
    No saliva

    I too am a newbie (and so glad that you found us ), 5 months out of treatments my worse problem is dry mouth and thick mucus in the back of my throat. Twelve years NED wow ! I can not manage to eat meat and feel sure I am not getting enough protien . I am wondering how you are able to eat meat ?Thanks in advance for your reply.

    Peggy

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #15
    Positively

    Hi Raly,

    Just want to say welcome and thank you. I'm home for the weekend fresh out my 1st week of treatment for SCC Tx N2b MO Stage IV. I needed to read a post like that.

    "T"

     

  • PapaPaul
    PapaPaul Member Posts: 33
    #16
    Thanks for the uplift

    I am just out of treatment (1 week) and am so glad to hear such a fantastic testamony. Like most, when I was first diagnosed (my cancer was very similar to yours, tumor left tonsil spread to nodes on left side of neck large encapsulated tumor on neck) my thought was....will I be here a year from now, 5 years 10.....Then got lost in the treatment routiene. Now that those are over, the thoughts tend to creap in again. It's great to hear of successes like yours. It gives us newbies confidence to confront the beast with courage and determination. Hopefully someday I will be able to give such confidence as well!

    I am sorry to for your loss and will pray for a comforting time for you during the services this weekend.

    Thanks again for the post

  • ditto1
    ditto1 Member Posts: 660
    #17
    Thanks Ralysport

    I am one year out from dx for BOT IV, chemo rads you know the drill.  Ned as of January 2013 hoping to keep it that way, so maybe I can repost in 11 more years.  Thanks from all of us for your testimony

  • ralysport
    ralysport Member Posts: 4
    #18
    PapaPaul said:

    Thanks for the uplift

    I am just out of treatment (1 week) and am so glad to hear such a fantastic testamony. Like most, when I was first diagnosed (my cancer was very similar to yours, tumor left tonsil spread to nodes on left side of neck large encapsulated tumor on neck) my thought was....will I be here a year from now, 5 years 10.....Then got lost in the treatment routiene. Now that those are over, the thoughts tend to creap in again. It's great to hear of successes like yours. It gives us newbies confidence to confront the beast with courage and determination. Hopefully someday I will be able to give such confidence as well!

    I am sorry to for your loss and will pray for a comforting time for you during the services this weekend.

    Thanks again for the post

    Papa Paul

    its not easy but you, I and so many others got kinda lucky.  This kind of cancer is treatable.  80% of us our Lymph nodes did their job.  Funny is my grand kids call me papa too :-)  Enjoy the Grand kids they are everything.  My new goal in life is to be here for the Great grand kids....  You are correct the thoughts always come back even after 12 years.  Don't fight it as those thoughts are good "For me" anyway. 

  • ralysport
    ralysport Member Posts: 4
    #19
    Thanks for all the replies

    So many great people in the same fight it is scary.  12 years ago i found a site like this called ACOR.  this site through ACS rocks and the super thread is amazing.  last month when i met with my oncologist she said allot has happened in 12 years.  they would have used the new robotic surgery and would not have to separate my jaw and remove it during surgery.  the Radiation has come a long way as well.  They are able to concentrate the radiation better sparing saliva glands.  No complaints on my side.  during the first year no one can say anything to stop your mind from racing.  in some ways I got lucky as i was a young buck at 40 years.  I did not have to go so aggressive and had options to not remove my jaw.  But at the time i wanted to make sure i did everything possible to win the battle.  So many of you are struggling with weight, strength and physical health.  those were a challenge but at 40 years and 100lb over weight i was in a good position to survive that part of the battle.  I’ll try to get time to share my worst and best time through the fight.  No one can tell you what to do as everyone is special.  I fought hard trying to get the best for me at the time.  they had a "New" Chemo Caspian.  But Kaiser would not provide it as it was not "Traditional" i filed grievances and demanded the procedure almost going to the point of trying to pay for it myself.  Now 12 years later all i can say is the treatment i had in front of me was the best for me at the time.  my mind wanted more.  but that was just a distraction and added pressure.  Even a second opinion cost me $1,800 visiting the Stanford tumor board.  Waste of money and real rough day......  Trust your plan and embrace it.  force the food and find a way to keep your body with nutrients.  at one point i had gone over 100 days with nothing but insure and water.  enjoy every day you have.  find something good about it even if it’s just a smile from a loved one (Ok tell them to smile :-))  I'm going on vacation for 2-weeks and will share more when i get back....  God bless you all.... 

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #20
    ralysport said:

    Thanks for all the replies

    So many great people in the same fight it is scary.  12 years ago i found a site like this called ACOR.  this site through ACS rocks and the super thread is amazing.  last month when i met with my oncologist she said allot has happened in 12 years.  they would have used the new robotic surgery and would not have to separate my jaw and remove it during surgery.  the Radiation has come a long way as well.  They are able to concentrate the radiation better sparing saliva glands.  No complaints on my side.  during the first year no one can say anything to stop your mind from racing.  in some ways I got lucky as i was a young buck at 40 years.  I did not have to go so aggressive and had options to not remove my jaw.  But at the time i wanted to make sure i did everything possible to win the battle.  So many of you are struggling with weight, strength and physical health.  those were a challenge but at 40 years and 100lb over weight i was in a good position to survive that part of the battle.  I’ll try to get time to share my worst and best time through the fight.  No one can tell you what to do as everyone is special.  I fought hard trying to get the best for me at the time.  they had a "New" Chemo Caspian.  But Kaiser would not provide it as it was not "Traditional" i filed grievances and demanded the procedure almost going to the point of trying to pay for it myself.  Now 12 years later all i can say is the treatment i had in front of me was the best for me at the time.  my mind wanted more.  but that was just a distraction and added pressure.  Even a second opinion cost me $1,800 visiting the Stanford tumor board.  Waste of money and real rough day......  Trust your plan and embrace it.  force the food and find a way to keep your body with nutrients.  at one point i had gone over 100 days with nothing but insure and water.  enjoy every day you have.  find something good about it even if it’s just a smile from a loved one (Ok tell them to smile :-))  I'm going on vacation for 2-weeks and will share more when i get back....  God bless you all.... 

    Time...
    Even though your treatment was over 12 years ago.....

    There are still many similarities, other than HPV is the dog on the block (or maybe just more known dog) these days..

    Not sure on sparing salivary glands, other than maybe on a permanant basis. It's very rare for someone these days still not to take a pretty hard hit. Most here still lose all of their taste and saliva, though many regain a portion if not all of it back eventually. Some of us taking nearly two years or more.

    SuperThread is awesome....

    My buddy Dawn (Sweetblood22) built the original all on her iPhone with a little help with the HTML from me. When they upgraded a few things on the site recently, it got hosed so I fixed it again.

    Keep Dawn in your thoughts and prayers please... She's having some issues with Cancer again. At this point just surgery, we'll know more once her biopsy are back...

    Like you, I had extra weight going in..., no PEG. But I too was mainly on an Ensure and water diet for 7 - 8 weeks, and a few sliced peaches to keep the swallow muscles going.

    Four years clean and clear for me....

    Keeping a positive attitude, and a sense of humor sometimes is more than half the battle, or in my case...Abi-Normal sense of humor.

    Best,
    John

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