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Today, I have reached two years NED

Abbycat2
Abbycat2 Member Posts: 644

and I am celebrating! Some time ago, I questioned my gyne oncologist as to when "NED" officially begins.   I've read here that it is when a woman first heard those dreadful words "You have cancer." I've also heard that it is when adjuvant Tx ended, i.e., chemo or radiation after surgery.  My surgeon said that NED starts with your hysterectomy, as the removal of a woman's cancer is 90% of the cancer Tx. 9% of the remaining 10% of Tx is chemo and/or radiation.

Two years ago today, I had a hysterectomy. I had tears running down my face when I was rolled into the operating room and before I lost consciousness. I fully understood my terrifying situation and the possibility that my situation was dire.  Frankly, I didn't think I would survive this long given my horrible diagnosis and all that I read about how deadly UPSC is. I don't know how long I will live but I have to say cancer has opened my eyes to the importance of living each and everyday as though it is my last day on Earth. My perception of my life, others lives and the world in general has changed- in some ways positlively and in other ways negatively. For example  I have always been outgoing and friendly, but now I find myself withholding parts of my inner thoughts and feeling from others. Keeping my cards close to my chest, sort of speak. Perhaps like molimoli, I am trying to not burden those I love with my problems. Maybe, l am also trying to cushion myself from the suffering of letting go.

Da#n, I hate cancer!

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Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 2,928 **
    We love ya though!

    We love ya though!  Congratulations and, even though it has been under such terrible circumstances, I am glad I have met you.  

    I hope you did something really special for YOU!  A facial, manicure, great meal or maybe some bubbly.  Heck maybe all of the above.  

  • Lou Ann M
    Lou Ann M Member Posts: 996
    Celebrate and then celebrate

    Celebrate and then celebrate some more.  You deserve it.  Hugs and prayers, Lou Ann

  • EZLiving66
    EZLiving66 Member Posts: 1,476 **
    Congratulations, Abby!!

    My take on life is - everybody is dying; and very few know how long they have.  One of my friends who never missed a day of school all the way through high school graduation died at 22 when she was thrown off a horse and broke her neck.  She left two little girls along with a husband - they were exactly the same age as my kids.  Another good friend had a heart attack at 27.  She never married or had any kids.  Every year on her birthday I sent her now 90 year old mother a card - she was her only daughter with three boys.  My youngest brother dropped dead at 37 in his living room after coming home from the hospital on a Saturday morning after having an MRI on his shoulder - it wasn't his shoulder; it was his heart.  His 16 year old daughter and his 12 year old mentally handicapped son were with him.

    The thing is, life is so fragile and yet so strong.  I know this sounds crazy, but I don't mind having this.  Life is what it is.  I don't believe in a personal god but I do believe there has to be something that is that spark of life that comes at birth and leaves at death.  As with anything in my life, I will work through it and what happens, happens.  I have had a wonderful life and I certainly don't want it to end but I'm a quality over quantity person.

    Congratulations on your anniversary, Abby.  I raise my bottle of Lipton Ice Tea to you and offer a toast to many, many more of NED!!

     

    Take care,

    Eldri

  • Editgrl
    Editgrl Member Posts: 903
    Congratulations, Abbycat!

    I wish I weren't in chemo, so that I could lift of glass of champagne in a toast to you!  Well, I could still lift it, but I'd have to let someone else drink it...

    Here's to living life in all of its awful beauty.  May you continue to thrive, love and be loved.

    Chris

  • AWK
    AWK Member Posts: 364
    Happy Birthday! Congrats on the anniversary

    I read somewhere that some consider the NED to be a period of rebirth in some ways.  It might seem strange but I think it is a day to mark the Thriver you are and the new perspective you carry - both good and bad. I  know you lost someone very close to you to breast cancer; maybe this is a day to live a little more loudly, enjoy a piece of cake and have a wonderful swim.  

    You inspire me and have been a good centering point of calm for me on many days.  Cheers to you.  

    Hugs Anne

  • EZLiving66
    EZLiving66 Member Posts: 1,476 **
    I've been thinking about NED

    You know that makes perfect sense to define NED as after your surgery if the surgery removed all the visible cancer.  Obviously everybody has cancer cells in their body but your immune system kills them before they can attach and multiply.  That's where we are!!  On October 30th, I will be be one month NED.  Hey, this is pretty cool!!

    Take care and look for the positive!

    Eldri

  • ConnieSW
    ConnieSW Member Posts: 1,578 **

    I've been thinking about NED

    You know that makes perfect sense to define NED as after your surgery if the surgery removed all the visible cancer.  Obviously everybody has cancer cells in their body but your immune system kills them before they can attach and multiply.  That's where we are!!  On October 30th, I will be be one month NED.  Hey, this is pretty cool!!

    Take care and look for the positive!

    Eldri

    Hey, Abby

    Great feeling, isn't it?  And it'll be even better next year and the year after and on and on.  Relish every single day.

  • Sandy3185
    Sandy3185 Member Posts: 228
    Congratulations!

    You know, I never thought of it that way! In that case I will be two years NED on Dec 5th! You are so right. From now on, I will consider myself NED from 12/5/2013. I am so happy for you and hope we both continue to dance with NED for many years.  Sandy

  • debrajo
    debrajo Member Posts: 1,095
    Kathy

    Happy Re=birthday!  There is a framed plaque in my dr.'s waiting room that reads "You became a survior the moment you were diagnosed"!!!   I like the idea of being Ned right after surgery!  My original gyn who found the UPSC said she took three biopsys of the polyop and basicaly got rid of the whole thing that way.

    I wouldn't worry about closing yourself off, so to speak.  Sometimes all we are doing is protecting our own heart, mind and soul!  We are human and our inner self can only take so much!  Most of your outgoing spirit will come back.  We all have PTSD over this stuff not to mention the regular life time of crud we have gone through! Anyway, congradulations on your great news!  Best, Debra(Jo)

  • molimoli
    molimoli Member Posts: 514
    Congrats Cathy.

    Me too love you lots. Grant her Ned for ever my Creator please,please,please !!!  Stay sweet.

    Nuffnuff love,  Moli.

  • molimoli
    molimoli Member Posts: 514

    Congratulations, Abby!!

    My take on life is - everybody is dying; and very few know how long they have.  One of my friends who never missed a day of school all the way through high school graduation died at 22 when she was thrown off a horse and broke her neck.  She left two little girls along with a husband - they were exactly the same age as my kids.  Another good friend had a heart attack at 27.  She never married or had any kids.  Every year on her birthday I sent her now 90 year old mother a card - she was her only daughter with three boys.  My youngest brother dropped dead at 37 in his living room after coming home from the hospital on a Saturday morning after having an MRI on his shoulder - it wasn't his shoulder; it was his heart.  His 16 year old daughter and his 12 year old mentally handicapped son were with him.

    The thing is, life is so fragile and yet so strong.  I know this sounds crazy, but I don't mind having this.  Life is what it is.  I don't believe in a personal god but I do believe there has to be something that is that spark of life that comes at birth and leaves at death.  As with anything in my life, I will work through it and what happens, happens.  I have had a wonderful life and I certainly don't want it to end but I'm a quality over quantity person.

    Congratulations on your anniversary, Abby.  I raise my bottle of Lipton Ice Tea to you and offer a toast to many, many more of NED!!

     

    Take care,

    Eldri

    BAM !! on the head of reality, I love it.

    Quality over quantity ? BAM<BAM<BAM !!! Nuff said, Me got sealed lips. but heart on a hug fest, HUGS to all my amazing sisters on this blog.

    Eldri sorry about your family and friends, but the lessons learnt from those experiences are serving you well, it's shining through.  Showers of NED blessings my sister.

    Moli.

  • HellieC
    HellieC Member Posts: 524
    Great news!

    Great news!  Whether you count it from diagnosis, surgery, or post surgery treatment - it's still good news!  It's a long old journey,with many bumps in the road, so we need to celebrate every victory along the way!

    Kindest wishes
    Helen xx

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,801 **
    HellieC said:

    Great news!

    Great news!  Whether you count it from diagnosis, surgery, or post surgery treatment - it's still good news!  It's a long old journey,with many bumps in the road, so we need to celebrate every victory along the way!

    Kindest wishes
    Helen xx

    abbycat

    Time to CELEBRATE!!!!  Congrats on your two years. And heres to many many more for you and all the rest of us that celebrate with you.

    I have heard that we settle into a new normal over time. I hope your new normal will bring you peace, calmness and allow you to be open again when you get there.

    Love and Hugs,

    Cindi

  • Cucu me
    Cucu me Member Posts: 213

    abbycat

    Time to CELEBRATE!!!!  Congrats on your two years. And heres to many many more for you and all the rest of us that celebrate with you.

    I have heard that we settle into a new normal over time. I hope your new normal will bring you peace, calmness and allow you to be open again when you get there.

    Love and Hugs,

    Cindi

    Dear sister,

    Stay on this board just to be with us for inspiration and never have problems with your health.

  • Kaleena
    Kaleena Member Posts: 2,059
    Congrats on 2 years!

    Cathy

    Happy to celebrate with you.  Sending hugs and continued well wishes!!

     

    Kathy

  • pinky104
    pinky104 Member Posts: 574
    Survival Years

    Interesting that your doctor told you that survivorship starts 5 years after your surgery.  I'd read many times on here that survival starts counting after your hysterectomy.  However, my oncologist (separate from my gyn/onc who did my surgery) told me congratulations on being officially 5 years out at five years after the end of my last chemotherapy appointment. I wonder if it depends upon whether you're talking to your surgeon or the adjuvant therapy person.  Maybe they each consider what they do the most important thing in your treatment.  Anyway, congrats and may you have many more years of survivorship!

      

  • EZLiving66
    EZLiving66 Member Posts: 1,476 **
    pinky104 said:

    Survival Years

    Interesting that your doctor told you that survivorship starts 5 years after your surgery.  I'd read many times on here that survival starts counting after your hysterectomy.  However, my oncologist (separate from my gyn/onc who did my surgery) told me congratulations on being officially 5 years out at five years after the end of my last chemotherapy appointment. I wonder if it depends upon whether you're talking to your surgeon or the adjuvant therapy person.  Maybe they each consider what they do the most important thing in your treatment.  Anyway, congrats and may you have many more years of survivorship!

      

    If you think of NED as being no evidence of disease

    If you think of NED as being no evidence of disease, that would mean different things to different people.  If, after my hysterectomy, my CT scan would have shown other tumors, then I wouldn't have been NED.  But since nothing showed up in lymph nodes or visably anyplace else then wouldn't that be NED?  

    My gyno/oncologist told me that with just the hysterectomy, I had a 50/50 chance they had gotten it all since they couldn't find any other cancer.  But....since it was UPSC there may be many cells of undetectible cancer that the chemo would kill off upping my survival rate at five years to 80 to 90%.

  • LA123
    LA123 Member Posts: 41
    That is wonderful!!

    I am so glad you reached a wonderful milestone, congratulations! You made my day. :0) 

  • Abbycat2
    Abbycat2 Member Posts: 644
    LA123 said:

    That is wonderful!!

    I am so glad you reached a wonderful milestone, congratulations! You made my day. :0) 

    Thank you for all the wel wishes, my friends

     

    Believe it or not, I had a quiet evening at home and didn't lift Lipton Tea (Eldri) or champagne (Chris) to my lips!  But I did reflect on my good fortune so far.  Eldri, I am so sorry to hear of the loss of your friends and brother at such young ages.  You have a remarkably positive attitude and I agree that we are all "dying".  Shakespeare said that April is the cruelest month because all around us new life is beginning- well, that is, except for our own individual lives. Kathy congrats on reaching 10 years since your diagnosis and I am wishing you the best with your upcoming surgery.  Sandy, glad to hear that you will reach your two year annivarsary NED on December 5th.  Debrajo, it is like a "Re-Birthday".  I think we do suffer from PTSD.  Cindi, we do settle into a new normal somehow.

    I saw my gyn onc yesterday and he told me that I should continue to do as I am doing, that is exercising and eating right. I have been having a pain in my upper back and side and he doesn't think it is related to the cancer, but he could see that I have been feeling somewhat anxious about it, so I will be having a Cat scan sometime soon.  I have now graduated to seeing him, not every 3 months, but every 6 months if all continues to go well.  I am happy about that!

    Hug and Love,

    Cathy      

  • Double Whammy
    Double Whammy Member Posts: 2,832
    Abbycat2 said:

    Thank you for all the wel wishes, my friends

     

    Believe it or not, I had a quiet evening at home and didn't lift Lipton Tea (Eldri) or champagne (Chris) to my lips!  But I did reflect on my good fortune so far.  Eldri, I am so sorry to hear of the loss of your friends and brother at such young ages.  You have a remarkably positive attitude and I agree that we are all "dying".  Shakespeare said that April is the cruelest month because all around us new life is beginning- well, that is, except for our own individual lives. Kathy congrats on reaching 10 years since your diagnosis and I am wishing you the best with your upcoming surgery.  Sandy, glad to hear that you will reach your two year annivarsary NED on December 5th.  Debrajo, it is like a "Re-Birthday".  I think we do suffer from PTSD.  Cindi, we do settle into a new normal somehow.

    I saw my gyn onc yesterday and he told me that I should continue to do as I am doing, that is exercising and eating right. I have been having a pain in my upper back and side and he doesn't think it is related to the cancer, but he could see that I have been feeling somewhat anxious about it, so I will be having a Cat scan sometime soon.  I have now graduated to seeing him, not every 3 months, but every 6 months if all continues to go well.  I am happy about that!

    Hug and Love,

    Cathy      

    Congratulations Cathy!

    Time and knowledge are our best friends IMHO.  Unfortunately, getting to the time where we can look back on it all takes - time.  And you can check off 2 years and hopefully move on to doctor visits every 6 months.  That is indeed a big deal.  I'm glad your doc wants to put your mind at ease by doing that CAT scan and you will be able to be assured that the pain is from somthing other than cancer.

    Suzanne