2 years - UPDATE - NED!

fishmanpa
fishmanpa Member Posts: 1,227 Member
edited May 2015 in Head and Neck Cancer #1

This just in... May 19th 2015 - Follow up at Johns Hopkins... NED! Next appointment in 6 months. 

Hard to believe.... April 24th 2013 I returned home from Baltimore 65lbs lighter with a PEG tube hanging out of my stomach. I'm two years out, gained back around 30lbs and still NED. The "New Normal" certainly has it's ups and downs but I'm managing and doing well. Acupuncture really has helped. I still have to take some pain meds now and again but for the most part a couple of ibuprofen do the trick. Eating/swallowing has improved. I still need my water bottle handy but far less than before. Ehh... it is what it is. I started playing music again a year ago and I just started yet another season performing in the Shenandoah Park. My voice lost a few steps and stamina is still a bit of an issue but I effectively work around it and no one would even know the difference other than myself. 

So two years. That's the big hurdle according to all the info and specs. Get past the two year mark and the chances of a recurrence diminish dramatically. I see my surgeon and radiation oncologist May 19th and I fully expect another NED. My medical oncologist and speech pathologist gave me the all clear in February and they don't need to see me until next year! 

For those who encouraged me through the journey, thank you. For those just starting, it's a hell of a battle but it's doable. And finally my thoughts and prayers to those we lost.

Y'all stay positive!

"T"

 

Comments

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    Congratulations!

    Keep up the good work! 

    Deb

  • wmc
    wmc Member Posts: 1,804
    Way to go "T"

    Yes the "new normal" has it's ups and downs but it sure is nice to have the option to have that New Normal. Like you say, stay positive. Two years seems like it was not that long ago. I'm at 18 months and some days it seems like just yesterday and others it seems like so long ago.

    Bill

  • Grandmax4
    Grandmax4 Member Posts: 723
    Love your news

    Congratulations T, happy all is well and you're coping...

  • SimmsFond1
    SimmsFond1 Member Posts: 6
    Congrats on your new life!!

    Congrats on your new life!! May you stay postive and rock out in life. I did the same, you only live once Tongue Out

    Best regards,

    Simms

     

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    wooHoo

    Congrats T-Man..

  • MrsBD
    MrsBD Member Posts: 615 Member
    Two Years

    Seeing another one of us hit the two year mark is wonderful. I'm so glad the acupuncture is helping. It worked for me. It's amazing that you can sing again. My voice doesn't behave yet, so I sing in my head. You've given me hope. Looking forward to your official NED announcement next month!

  • tommyodavey
    tommyodavey Member Posts: 726 Member
    MrsBD said:

    Two Years

    Seeing another one of us hit the two year mark is wonderful. I'm so glad the acupuncture is helping. It worked for me. It's amazing that you can sing again. My voice doesn't behave yet, so I sing in my head. You've given me hope. Looking forward to your official NED announcement next month!

    Yea!

    Two years is a big deal in my book.  The further away from the disease you are the less you'll think about it.  One of these days you just might not think about being sick before.  There are days that go by with me where my C doesn't enter my thought process.  To me, that is a miracle in itself.

     

    Congratulations!

     

    Tom

  • hwt
    hwt Member Posts: 2,328 Member

    Yea!

    Two years is a big deal in my book.  The further away from the disease you are the less you'll think about it.  One of these days you just might not think about being sick before.  There are days that go by with me where my C doesn't enter my thought process.  To me, that is a miracle in itself.

     

    Congratulations!

     

    Tom

    T

    Heartfelt congratulations T!

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    wonderful news!

    So glad you are doing well.  Proud of your strength and accomplishments.

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    congrats T!  wow, that time

    congrats T!  wow, that time really flew by.  I hope you and Marcia celebrated this big event.  i am definitely doing a happy dance for you!

    God bless you,

    dj

  • donfoo
    donfoo Member Posts: 1,771 Member
    time shrinks

    I remember when we were on the battlefield, it seemed you were much more ahead of me than when I think about it now. So glad to hear you feeling upbeat about NED at two years. I hope to be right behind you as my two years post is June 4. Great to hear another season in the mountains on the books! Take care and enjoy every day.

    Don

  • cureitall66
    cureitall66 Member Posts: 913
    Congrats....

    Congrats "T"! We weren't that far behind you...hit our 2 yr mark in November! Wonderful feeling.

    "K" is doing well. Laughing

    ~"C"

  • jim and i
    jim and i Member Posts: 1,788 Member
    Hey "T" good to hear from

    Hey "T" good to hear from you. Congratulations on the  year mark, you will have many more years I am sure.

     

    Debbie

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    Thank You!

    Thanks everyone!

    Looking back, the two years have gone by in a blur. It seems like it was a lifetime ago yet at the same time it was just yesterday. I remember all the advice and encouragement and I don't know how I would have managed without it. This is a very special community of people.. We're a brotherhood/sisterhood and it crosses over into all cancers. We're "Survivors".  

    It's interesting in that much of the advice you can't really comprehend at the time as you haven't experienced it but as time goes on and you experience the various aspects of the "New Normal", your memory fires up and you recall a post on the forum where someone posted their experience and advice and you recall it and it's an "Oh Yeah" moment... so and so said that would happen! 

    It certainly has been an incredible journey. One that I've taken day to day, week to week and month to month. Progress and recovery is measured in small milestones and sometimes, it's just the realization that some small aspect of normalcy has returned to your life. 

    Keep on fighting the good fight. My positive thoughts and prayers are always with you. I'll give you the good news on the 19th...

    "T"

     

     

     

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    fishmanpa said:

    Thank You!

    Thanks everyone!

    Looking back, the two years have gone by in a blur. It seems like it was a lifetime ago yet at the same time it was just yesterday. I remember all the advice and encouragement and I don't know how I would have managed without it. This is a very special community of people.. We're a brotherhood/sisterhood and it crosses over into all cancers. We're "Survivors".  

    It's interesting in that much of the advice you can't really comprehend at the time as you haven't experienced it but as time goes on and you experience the various aspects of the "New Normal", your memory fires up and you recall a post on the forum where someone posted their experience and advice and you recall it and it's an "Oh Yeah" moment... so and so said that would happen! 

    It certainly has been an incredible journey. One that I've taken day to day, week to week and month to month. Progress and recovery is measured in small milestones and sometimes, it's just the realization that some small aspect of normalcy has returned to your life. 

    Keep on fighting the good fight. My positive thoughts and prayers are always with you. I'll give you the good news on the 19th...

    "T"

     

     

     

    Normalcy

    I can't really relate..., as my normalcy, is actually abi-normalcy to most... But to me, I'm even more, ummm abi-normalcy than before.., bawhahahaaa... Foot in Mouth