enlightened denial

ooo
ooo Member Posts: 105
in Head and Neck Cancer #1
Hello friends!

Even though I'm not reading posts daily, I think of you guys every single day, really.

After finishing treatment I fell in a beautiful oblivion. I've been following up regularly with my docs and exploring my mouth and neck once a week to make sure that everything is alright, but apart from that I'm living as if cancer never happened. And I do have that luxury, since most of the side effects from surgery and radiation are gone.

Positive messages from people who were done with treatment have always been very encouraging to me, so these are my 2 cents for the newbies.

I was diagnosed with squamous cell carcinoma of the tongue (stage I) in February 2012, age 30. I had surgery to remove the tumor and a partial neck dissection. The pathologist found some perineural invasion and I proceeded with 5 weeks of IMRT, a 10-day break and then 5 sessions of brachytherapy. End of treatment in June 2012. At the end of brachytherapy I couldn't taste sweet for 2 or 3 weeks. Taste is now back to normal. I never lost my saliva, even though I noticed some decrease in salivation which still persists (especially when I have to talk for a long time.. sip sip). During treatment I focused on eating as much as I could and I gained 10+ lbs which I'm now slowly loosing as I'm getting more and more physically active. Speechwise I'm doing really well; people can't really tell that anything happened to my tongue, apparently I'm the only one who can hear the difference. I've been back to work full-time for almost two months now: I work in a lab doing research which might be vaguely related to cancer. Even this small connection is a source of great joy. I'll have my first scan in a couple of months and hopefully NED will befriend me.

Much love.

Dre.

Comments

  • Billie67
    Billie67 Member Posts: 898
    #2
    profile Pic
    I love the picture Dre! When I was done with treatment I told them to burn the mask, never watned to see it again but I do love what you have done with yours, thats awesome.

    Sounds like you've been thru a lot and are doing much better now. So happy for you.

    I am hoping you will hear NED too on your upcoming scan results. Keep us posted.
    I get my first scan in a few weeks and I'm biting my nails.

    Billie
  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #3
    Living well is the best revenge
    You are "Living like cancer never happened." That's the best revenge against this disease!

    Mike
  • ditto1
    ditto1 Member Posts: 660
    #4
    Mikemetz said:

    Living well is the best revenge
    You are "Living like cancer never happened." That's the best revenge against this disease!

    Mike

    ooo
    glad you are doing so well and getting on with life. Im not a newbie but I feel when someone with more time in this cancer world speaks its worth listening to. Im a little over 2 weeks out so I to am looking forward to more normal and putting this cancer father into my review mirror. So Good a Job a you.
  • hwt
    hwt Member Posts: 2,328 Member
    #5
    ditto1 said:

    ooo
    glad you are doing so well and getting on with life. Im not a newbie but I feel when someone with more time in this cancer world speaks its worth listening to. Im a little over 2 weeks out so I to am looking forward to more normal and putting this cancer father into my review mirror. So Good a Job a you.

    congrats
    thanks for sharing life after cancer :-)
  • tommyodavey
    tommyodavey Member Posts: 726 Member
    #6
    hwt said:

    congrats
    thanks for sharing life after cancer :-)

    Great Stuff
    The day will come when I too will be able to live in denial of my previous cancer. Your attitude is so awesome dude it puts a smile on my face to read it.

    Billie, my Onc techs told me not to burn my mask because the plastic is toxic so I doubt they did it. No bother, you'll never see it again. I put mine up in the garage with some sunglasses so I'll always be reminded of my second gift of life given to me.

    Tom
  • Billie67
    Billie67 Member Posts: 898
    #7
    tommyodavey said:

    Great Stuff
    The day will come when I too will be able to live in denial of my previous cancer. Your attitude is so awesome dude it puts a smile on my face to read it.

    Billie, my Onc techs told me not to burn my mask because the plastic is toxic so I doubt they did it. No bother, you'll never see it again. I put mine up in the garage with some sunglasses so I'll always be reminded of my second gift of life given to me.

    Tom

    Tom
    I am not quite sure what they did with the mask. The tech did say something about melting it down but I'm not sure.
    Hanging it in the garage is a cool idea. My husband wanted me to keep it, so did the kids but I was this emotional, not feeling good whimp and I just didn't want any reminders of it. I do have pictures of me "modeling" it tho. Every once in a while I look at it and I am grateful to not have to wear in for 23 mins a day!
    I wonder if I'll every wish I'd kept it? Oh well, whats done is done.

    Billie
  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #8
    feeling good
    Hi Dre,

    Great recovery and so fast both mentally and physically. Treatment kicked me a little harder, but things (taste & stamina) are looking up, it is just a slow road.

    I think I need to move my mask out to the shop; it is sitting behind me, right where I dropped it on March 23rd. It is a conversation generator.

    Keep healing and feeling better

    Best,

    Matt
  • amy_h414
    amy_h414 Member Posts: 98
    #9
    CivilMatt said:

    feeling good
    Hi Dre,

    Great recovery and so fast both mentally and physically. Treatment kicked me a little harder, but things (taste & stamina) are looking up, it is just a slow road.

    I think I need to move my mask out to the shop; it is sitting behind me, right where I dropped it on March 23rd. It is a conversation generator.

    Keep healing and feeling better

    Best,

    Matt

    Mask
    My husband did not keep his mask. I read in the paper recently about an exhibit coming to American University of art made from radiation masks. It's sponsored by a group raising money to offer financial support to H/N cancer patients. I'm pretty sure my husband would not have thought to turn his mask into a piece of art, he wanted that thing destroyed!

    The mask exhibit: http://courageunmasked.org/courage-unmasked-event/
  • phrannie51
    phrannie51 Member Posts: 4,716
    #10
    Dre!! It's wonderful
    hearing from you again....I missed you! You sound like you're doing fantastic, already have some spit...and you can taste again...(you're so lucky :)!)...You're attitude is top notch, too....that serves you very well...Can hardly believe you've been back to work for almost two months....damn!

    I also will be getting my first scan in a couple of months, so I guess we're still on the bus together, just some of us have to keep riding it everyday....still the same bus.

    It was really good hearing from you....you recovery has perked me up!

    p
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #11
    Hang on Slurpy....
    LOL, hey Dre,

    I'm glad to see all is well and coming along as planned.... More than likely, most of the saliva will return.

    It took nearly two years for me to completely get my taste back, and around 95% of my saliva....hopefully you'll get there as well, and sooner...

    Billie

    I hear ya on that damned mask...., I told them to burn it, I never wanna see that thing again.

    John

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