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NCEllen
NCEllen Member Posts: 115 Member
edited March 2014 in Ovarian Cancer #1
Hello all! I Feel the Teal...I'm new at actually posting but have been a spirit warrior with all of you all. I've felt your hurrahs and the uh-ohs. I'm glad to finally come on-board. I still have a hard time believing this 'chapter' of my life, but as my subject indicates each day is a clean sheet, a brand new page. Sometimes it's just an intermission where I don't 'write' anything at all, but sometimes I color, sometimes I just scribble outside the lines 'cause I feel like it... Anyway - diagnosed OVCA 1-28-09 stage III. Had the optimal surgery: Hyst/debulk/washings etc. in Feb. with 2 more hospital admits in Feb. due to complications. Finally came home in March with a temp. ileostomy, wound vac and drains (yuk) Started chemo carbo/taxol in March and last tx. was July 20th. July CA-125 prior to that last treatment was 3.2.
Had my ileostomy reversed in Oct. - my August CA-125 was 3. This reversal has been a roller coaster trying to get somewhat regular again. That was a really long chapter I hadn't planned on! So - my last CA-125 Dec. 28th was 2.35...very surprised to say the least. I didn't think it would continue to drop...so, I opted out of a follow-up Taxol regimine, but know that Hissy_Fitz will be taking that route and I'm wishing only the best as my next CA-125 is due at the end of March. As my onc. said- the hardest part of being in remission is not doing anything to try and treat it. He's right. It's hard to let go of a treatment of all things. I've learned to focus and just rely on my faith when I think the deep end of the well won't stop.
I want you all to know that everyone of you inspire me and give me forward spirit. So even if I don't write on my 'page of the day', I'll read y'alls posts and at least stamp a smiley face on it...oh and those little stars for celebrations and also stars for the light in dark times too. We will battle and we will 'FIGHT LIKE A GIRL!!!' gotta love those teal T-shirts! Later Ladies, nice to meet you... Ellen

PS: Howdy y'all to the Texas ladies! We transplanted to NC 17 years ago from Dallas but I still manage to keep chicken fried steak on my menu!

Comments

  • catcan
    catcan Member Posts: 119
    Welcome
    NCEllen

    Nice to meet you sorry it had to be here. Faith helps me through it too. Glad you are doing so well.

    Good thoughts Cat
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    Hello Ellen
    It is nice to read your story & to realise your CA 125 is still way below 35. I found it interesting to read how hard you've found it in remission "not having treatment". I've often thought to myself "I oftenwonder what it would be like to be in remission and not be having treatment?" You must be so scared and frightened that it will come back?

    I am half way through my carbo/taxol regime and my CA 125 has dropped amazingly from 1119 to 156 in only 3 treatments. But I don't think I could ever feel at ease NOT having treatment?

    I expect my oncologist will explain it to me when the time comes.

    Keep in touch love Tina xxxxxx
  • Mawty
    Mawty Member Posts: 133

    Hello Ellen
    It is nice to read your story & to realise your CA 125 is still way below 35. I found it interesting to read how hard you've found it in remission "not having treatment". I've often thought to myself "I oftenwonder what it would be like to be in remission and not be having treatment?" You must be so scared and frightened that it will come back?

    I am half way through my carbo/taxol regime and my CA 125 has dropped amazingly from 1119 to 156 in only 3 treatments. But I don't think I could ever feel at ease NOT having treatment?

    I expect my oncologist will explain it to me when the time comes.

    Keep in touch love Tina xxxxxx

    No treatment
    I talked to my doctor about this. It is a very hard time for cancer patients when they make the step from constantly being monitored, tested, and, in fact, physically fighting the disease with chemo to doing basically nothing. It plays games in your head, but you begin to enjoy it once you get a few monthe behind you. I was hoping for more than 7 months, but that's the way it goes. Hopefully you'll have many, many years dancing with NED!

    Marty
  • kayandok
    kayandok Member Posts: 1,202 Member
    Welcome!
    Hi Ellen, welcome aboard, although I'm sorry you had to be in this boat too. I just read your personal story and am very inspired by your words!!!
    You certainly have been through a lot and it is so awesome to hear you are NED. I don't know that I have heard of a CA125 of 2.35 before. I know that dancing with NED has it's own stresses (I did get 8 glorious months!!) but in spite of that I hope you can take some time to kick back and enjoy life.

    Warm hugs,
    Kathleen:)
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    Welcome
    Hi Ellen, thanks for sharing your story, it has been quite a journey for you. Like Kathleen I have never heard of a ca125 that low either. Congratulations. Hugs ♥ Prayers Bonnie
  • NCEllen
    NCEllen Member Posts: 115 Member

    Hello Ellen
    It is nice to read your story & to realise your CA 125 is still way below 35. I found it interesting to read how hard you've found it in remission "not having treatment". I've often thought to myself "I oftenwonder what it would be like to be in remission and not be having treatment?" You must be so scared and frightened that it will come back?

    I am half way through my carbo/taxol regime and my CA 125 has dropped amazingly from 1119 to 156 in only 3 treatments. But I don't think I could ever feel at ease NOT having treatment?

    I expect my oncologist will explain it to me when the time comes.

    Keep in touch love Tina xxxxxx

    Feelings about IT coming back
    Hi Tina- when I was diagnosed I was like: 'OK - let's go..what do I do next..let's do it'. So I guess that's what will happen in my head when that time comes to do it again. I'm not scared really to tackle it again and I hope I don't have too but I've had some time now to gather some strength. I'm probably more sad if I think about it, and not for myself but for everyone else around me because I don't want them to be sad or scared. I also know that at some point my husband may be faced with chemo for his prostate cancer. Now I sort of know how he's felt for the past 8 years being in a state of slow remission. He told me he just has to 'learn' to not think about it plus he stays really busy with outdoor yard stuff. My newest positive thinking motto (besides tons of prayer & faith) is 'today is my hope for tomorrow and tomorrow is today'. That's my way of fighting off the negatives in my head that I find myself waking up with after a good night's sleep of all things - how crazy is that? Sending some positives your way + + + + + and to everyone else including our caregivers on this journey as well. Thanks for the welcome. Here's to robins and sunshine, Ellen
  • Mwee
    Mwee Member Posts: 1,338
    Fight Like a Girl!
    Thank you, Ellen..... I really needed that smile today.
    (((HUGS))) Maria
  • msfanciful
    msfanciful Member Posts: 559
    NCEllen said:

    Feelings about IT coming back
    Hi Tina- when I was diagnosed I was like: 'OK - let's go..what do I do next..let's do it'. So I guess that's what will happen in my head when that time comes to do it again. I'm not scared really to tackle it again and I hope I don't have too but I've had some time now to gather some strength. I'm probably more sad if I think about it, and not for myself but for everyone else around me because I don't want them to be sad or scared. I also know that at some point my husband may be faced with chemo for his prostate cancer. Now I sort of know how he's felt for the past 8 years being in a state of slow remission. He told me he just has to 'learn' to not think about it plus he stays really busy with outdoor yard stuff. My newest positive thinking motto (besides tons of prayer & faith) is 'today is my hope for tomorrow and tomorrow is today'. That's my way of fighting off the negatives in my head that I find myself waking up with after a good night's sleep of all things - how crazy is that? Sending some positives your way + + + + + and to everyone else including our caregivers on this journey as well. Thanks for the welcome. Here's to robins and sunshine, Ellen

    Welcome
    Hi Ellen,

    Just saw your posting, and would like to say welcome, however; as each of us are, sorry it had to be in this manner.

    My ca-125 number never got that low, the lowest mine ever was, I think was 6? Seems so long ago (currently a 49) at least last lab.

    We are all fighters and lovers of life and have experienced the ups and downs of dealing with this disease and some of the mind games it plays with us.

    Sharon
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    NCEllen said:

    Feelings about IT coming back
    Hi Tina- when I was diagnosed I was like: 'OK - let's go..what do I do next..let's do it'. So I guess that's what will happen in my head when that time comes to do it again. I'm not scared really to tackle it again and I hope I don't have too but I've had some time now to gather some strength. I'm probably more sad if I think about it, and not for myself but for everyone else around me because I don't want them to be sad or scared. I also know that at some point my husband may be faced with chemo for his prostate cancer. Now I sort of know how he's felt for the past 8 years being in a state of slow remission. He told me he just has to 'learn' to not think about it plus he stays really busy with outdoor yard stuff. My newest positive thinking motto (besides tons of prayer & faith) is 'today is my hope for tomorrow and tomorrow is today'. That's my way of fighting off the negatives in my head that I find myself waking up with after a good night's sleep of all things - how crazy is that? Sending some positives your way + + + + + and to everyone else including our caregivers on this journey as well. Thanks for the welcome. Here's to robins and sunshine, Ellen

    Ellen
    Thanks for sharing your story. I am so sorry that your husband is also fighting this battle. Stay strong and never give up hope xxxxxxxxxxxxxxxxxxxx