Another positive story

tbret
tbret Member Posts: 76 Member
in Head and Neck Cancer #1

SCC, right tonsil and lymph node, large 3cm+, stage IVb, 35 radiation doses and seven Cisplatin infusions stopped after five doses.

Friday (yesterday) I went through a PET scan again. 

This is the one closest to two and a half years after diagnosis for me.

I was all clear.  No metastasis anywhere to be seen.  NED

But I'm not writing to brag.  I'm writing so there is another example of another guy who has seen another Christmas three times already and looks like he'll see at least a fourth if a meteorite doesn't get me, first.  I am told that this scan is "one of the biggies" and is a very fine omen.  I was absolutely as freaked-out as a man could get.  I was sure I was going to die.  Like Charlie Brown at Halloween, I often "...got a rock" and I really didn't expect more.

I wouldn't have thought of myself as being particularly tough, either, but the medical folks all told me that I am.

Those of you who are just starting this whole thing should know that there are those of us who make it this far (and much, much farther) and many of us mostly recover with the exception of those little permanent changes you get to live with; exquisite little inconveniences, they are. (I have my fluoride trays in as I type)

Every time I go for a scan it is frightening and a little nightmarish.  It's a bit like climbing the steps to the gallows, sticking your head in the noose, and watching the hangman pull the level on the trap door under your feet. (okay, so now you have to imagine lots of dry ice fog around the base of the gallows stairs and a bony hand from underneath a robe pulling the lever of despair)  Is it going to open this time? Sometimes our imaginations just really run away with us.  I know full well that even IF I had lit-up it's not a death sentence and people (someone I knew, actually) might live 30+ years having defeated this stuff three times.

I've been gaining weight, feeling good, my labs are steady (not great, but steady) and I really was less worried this time than any other.  However... my poor spouse...she starts to melt down every time. It is objectively true that she'd be fine without me (I mean money-wise, etc., so the anxiety really is about watching your loved-one die of this stuff).  She works in healthcare and "knows too much" and it just about kills her every, single, time.  Honestly, watching her worry is more frightening than the scan routine and waiting for results.

So for anyone reading along that may be newly diagnosed; many of us do reach NED status and stay there for a long time.  I personally believe it has been worth the trouble.  :-)

But it is also worth remembering that it can be really hard on others, too.

The key is to; breathe, put one foot in front of the other, and be nice to those around you.  Believe it or not, there are people having a worse day than you are.

Comments

  • bugsyboy
    bugsyboy Member Posts: 39
    #2
    Congratulations!

    Congratulations!  Another scan, another milestone.

    Best of luck.

    Bugsy

  • big G
    big G Member Posts: 177 Member
    #3
    bugsyboy said:

    Congratulations!

    Congratulations!  Another scan, another milestone.

    Best of luck.

    Bugsy

    Well put Tbret

    That's a great story and reminder to be positive and believe. Thanks for sharing. I hope you have many more NED'S in your future!

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    #4
    Congrats & God Bless

    And it is great to hear you have NED, all clear, and you are feeling good. I like your write up and attitude considering what you went through. But we are alive and have much more awareness of the importance of each day. You are right there are people worse off and struggle with each day. Take care-hopefully many more NED's. 

  • donfoo
    donfoo Member Posts: 1,773 Member
    #5
    what can you say

    NED reports - Great!

  • ERomanO
    ERomanO Member Posts: 323 Member
    #6
    Yes, very well put, Tbret!

    Yes, very well put, Tbret!  Stories of positive outcomes need to be shared here more often for those that are reading posts here prior to starting their treatments.

  • tbret
    tbret Member Posts: 76 Member
    #7
    I wish all of us

    MANY years of NED, lots of years of loving those around us and all the good stuff of life (which probably isn't what we used to think it was). 

    You will never get me to say that "I'm glad I had a cancer diagnosis" or anything stupid like that.  ...BUT it sure has increased my perceived value of every single minute of every single day.

    If I taste something, I enjoy the experience even if I don't enjoy the taste.  I eat my breakfast (covered in black pepper) standing in my kitchen watching birds eat at the feeders I have put out. I enjoy them. (my middle child <pushing 25 years old> said to me that she never realized how many different birds there were around us all the time until I put out feeders). 

    Me?  Bird feeders?  A few years ago everyone would have called that highly unlikely.

    Oh, my youngest (22) made me a cake.  The icing  says "Glad you're not too bright," referring to the PET scan.   :-)    It's a good thing I love her.  I wonder where she got that sense of humor?  Maybe her mother who must have a pretty good sense of humor to have married me.

    No, I am NOT glad I had cancer or any part of any of that.  What a horror.  BUT --- I am guessing many of us now have an appreciation of things we never had before. 

    I wish it were possible to share that appreciation without sharing the illness, but I think it is one of the cases of "you had to be there," to *really* understand it.

    I got so mad at everyone who, standing there perfectly healthy, would talk about "None of us knows how long we have," or the ever-popular, "I could get hit by a bus tomorrow."  Yeah... yeah you could...  but you don't know there is a bus, I do.  If you encounter a bus, the driver does not know your name.  Mine does.  And even if he knows your name he doesn't have a heads-up display with a bullseye looking for you to cross a road. My bus has all of that and already got a piece of me once, so shut-up!

    I mean that in the best possible way, of course.

    Thanks, everyone, for the congratulations and wishes.  My hope is that we all live long and appreciate each day, each hour, each hand-hold, and every @#$^ who cuts us off in traffic or does something similarly nasty.   Who knows what they might be going through, right?

    For those of us just now facing down this Greyhound bus --- it not only can be done, but you will do it, too.  Modern medicine is nothing short of miraculous and there is life, GOOD life, on the other side.  Anything you might lose is TINY compared to what you get to keep.

    Again, thanks for all the good wishes. 

    Back at you all.

     

     

  • debbiel0
    debbiel0 Member Posts: 134 Member
    #8
    tbret said:

    I wish all of us

    MANY years of NED, lots of years of loving those around us and all the good stuff of life (which probably isn't what we used to think it was). 

    You will never get me to say that "I'm glad I had a cancer diagnosis" or anything stupid like that.  ...BUT it sure has increased my perceived value of every single minute of every single day.

    If I taste something, I enjoy the experience even if I don't enjoy the taste.  I eat my breakfast (covered in black pepper) standing in my kitchen watching birds eat at the feeders I have put out. I enjoy them. (my middle child <pushing 25 years old> said to me that she never realized how many different birds there were around us all the time until I put out feeders). 

    Me?  Bird feeders?  A few years ago everyone would have called that highly unlikely.

    Oh, my youngest (22) made me a cake.  The icing  says "Glad you're not too bright," referring to the PET scan.   :-)    It's a good thing I love her.  I wonder where she got that sense of humor?  Maybe her mother who must have a pretty good sense of humor to have married me.

    No, I am NOT glad I had cancer or any part of any of that.  What a horror.  BUT --- I am guessing many of us now have an appreciation of things we never had before. 

    I wish it were possible to share that appreciation without sharing the illness, but I think it is one of the cases of "you had to be there," to *really* understand it.

    I got so mad at everyone who, standing there perfectly healthy, would talk about "None of us knows how long we have," or the ever-popular, "I could get hit by a bus tomorrow."  Yeah... yeah you could...  but you don't know there is a bus, I do.  If you encounter a bus, the driver does not know your name.  Mine does.  And even if he knows your name he doesn't have a heads-up display with a bullseye looking for you to cross a road. My bus has all of that and already got a piece of me once, so shut-up!

    I mean that in the best possible way, of course.

    Thanks, everyone, for the congratulations and wishes.  My hope is that we all live long and appreciate each day, each hour, each hand-hold, and every @#$^ who cuts us off in traffic or does something similarly nasty.   Who knows what they might be going through, right?

    For those of us just now facing down this Greyhound bus --- it not only can be done, but you will do it, too.  Modern medicine is nothing short of miraculous and there is life, GOOD life, on the other side.  Anything you might lose is TINY compared to what you get to keep.

    Again, thanks for all the good wishes. 

    Back at you all.

     

     

    Thanks for writing what a lot

    Thanks for writing what a lot of us are thinking, well me at least..I am 2 yrs post treatment. It took awhile but I am finally in that happy place. Not angry with the world, not feeling  sorry for myself, not afraid to face the check ups ( ENT, Oncologists, Dentist) I am happy for the outcome of my treatments, not thrilled with the way I got thru them, but that is in the past.  I am a happier more relaxed person now... even if it was the hard road...my grandmother always said I did things the hard way , I guess she was right! 

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