Just more of the Same -

123Miley
123Miley Member Posts: 94
in Ovarian Cancer #1

So I was diagnosed with stage 3C OVC in 2007.  First let me say that I have been very fortunate and have enjoyed a lot of pretty good health and normalcy since my diagnosis. I have an amazing and blessed life.  And bottom line - I am still here!  Now for the whine - 

In 2011 after over 3 years of NED my tumor marker began to creep back up and in Sept of 2011 I went back on carbo/taxol.  Six treatments bought me about 6 months and then my marker started going up again.  So late last year we decided to start on Doxil in January.  Before my first treatment my CA125 was 116.  After the first treatment it had gone up to 190.  Second treatment and it went down to 179.  I had my third treatment two weeks ago and today found out my CA125 is now 146.  

woo hoo

Can you detect the sarcasm?  LOL.  This really is great news. My husband was all excited and asked oh have you called so and so and so and so to tell them. I am thinknig - no, why?  It is just more of the same *$%@.  Aren't we just postponing the inevitable?  I am so over it. 

I have never been an in between or "sort of" kind of person.  I am an all or nothing kind of girl.  That has proven to be a challenge for me in a lot of situations.  But now that poses a real problem (get ready for a blunt statement here) -  because the "nothing" part of this equation is dead and the "all" is no longer an option.  This is not going away.  

So I am trying to learn to be "kind of sick", to live with the gorillia in the room so to speak.  I feel pretty good most of the time.  I look fine - have all my hair etc.   I get up everyday.  I work, do yard work, house work.  I go out, travel etc.  But I have cancer.  It is just so hard to get and stay motivated about things, think long term, make some career decisons that are currently facing me, and regular everyday future life planning - without thinking - but what about and what if and whats the point?

I was good at being sick and good and being healthy. It seems it is this in between state that I need to work on.

 

 

Comments

  • Alexandra
    Alexandra Member Posts: 1,308
    #2
    Dear Miley

    What I see is an incredibly strong woman who managed to shake the beast off for 5+ years, who is active, productive, intelligent, who feels and looks fine, has a beautiful smile and a loving husband. You are fatigued by constant ups and downs and lack of control. It's normal, who wouldn't be?

    I will not disrespect you by cheap motivational speaking; we all here know how it ends, we just don't know when and hope for the best. 

    Where do I hope to see myself in 5 years? Where you are now. If I am lucky.

  • 123Miley
    123Miley Member Posts: 94
    #3
    Alexandra said:

    Dear Miley

    What I see is an incredibly strong woman who managed to shake the beast off for 5+ years, who is active, productive, intelligent, who feels and looks fine, has a beautiful smile and a loving husband. You are fatigued by constant ups and downs and lack of control. It's normal, who wouldn't be?

    I will not disrespect you by cheap motivational speaking; we all here know how it ends, we just don't know when and hope for the best. 

    Where do I hope to see myself in 5 years? Where you are now. If I am lucky.

    WOW!

    Thank you for some needed perspective, Alexandra!  Just typing all of that did make me feel better!  LOL!  And I think back to my first year with all of this and how sick I was.   I was worried I would not see my next birthday - never mind the next 6!  Hopefully people seeing my story will help them to know that there can be lots of life to be lived after diagnosis.  I am in a new and different place than I was 5 years ago, and it has its own challenges.  But I made it here.  I am glad for that and it sure beats the alternative! 

    I have read several of your posts and you are always very much the cheerleader and motivator for a lot of ladies on here.  Thank you for that!  I also read through your bio - and man you have been through a lot!  Makes me feel very lucky!  I will say I also got an infection in my incision after surgery and when my doctor popped that thing open - YOWZA did that hurt!  

    At the end of the day we all do what we have to do and endure what we have to endure and go on from there.  Good luck to you and thank you for your kind words!

     

  • marieinlv
    marieinlv Member Posts: 47
    #4
    yep, i do know what your feelin

    I love to sing this song, who am I kidding, YELL, when I'm in the car alone. "I get knocked down, but i get back up again, you're never gonna keep me down" by Chumbawamba. Yep, I'm one of those folks that you laugh at, or even scowl at, when i drive by with the windows down.

    You put into words so well, what so many of us feel at some point. It's something we can't begin to talk to folks that are healthier about, how could they understand eh? Like the other struggles in our life that we've mastered, this is doable too. You do make my heart full to know how well you are doing despite the struggle. I'm in remission now since my last treatment "May 11" 22months.My dx is UPSC(uterine pappillary serous carcinoma), which is treated like Ovarian cancer. I'm thankfull for all the sharing here on this board.

     

  • Glad to be done
    Glad to be done Member Posts: 569
    #5
    marieinlv said:

    yep, i do know what your feelin

    I love to sing this song, who am I kidding, YELL, when I'm in the car alone. "I get knocked down, but i get back up again, you're never gonna keep me down" by Chumbawamba. Yep, I'm one of those folks that you laugh at, or even scowl at, when i drive by with the windows down.

    You put into words so well, what so many of us feel at some point. It's something we can't begin to talk to folks that are healthier about, how could they understand eh? Like the other struggles in our life that we've mastered, this is doable too. You do make my heart full to know how well you are doing despite the struggle. I'm in remission now since my last treatment "May 11" 22months.My dx is UPSC(uterine pappillary serous carcinoma), which is treated like Ovarian cancer. I'm thankfull for all the sharing here on this board.

     

    I'm with Alexandra.....  I

    I'm with Alexandra.....  I too want to be you.  I want to have 5 great years (I am already 1 in).  If I can get 5 great years out of my NED then I will deal with what comes when it comes..... 

  • 123Miley
    123Miley Member Posts: 94
    #6
    marieinlv said:

    yep, i do know what your feelin

    I love to sing this song, who am I kidding, YELL, when I'm in the car alone. "I get knocked down, but i get back up again, you're never gonna keep me down" by Chumbawamba. Yep, I'm one of those folks that you laugh at, or even scowl at, when i drive by with the windows down.

    You put into words so well, what so many of us feel at some point. It's something we can't begin to talk to folks that are healthier about, how could they understand eh? Like the other struggles in our life that we've mastered, this is doable too. You do make my heart full to know how well you are doing despite the struggle. I'm in remission now since my last treatment "May 11" 22months.My dx is UPSC(uterine pappillary serous carcinoma), which is treated like Ovarian cancer. I'm thankfull for all the sharing here on this board.

     

    Congrats on your remission!

    Congrats on your remission!  Thanks for your response and good luck!  This is doable!  We are all living proof of that!

  • 123Miley
    123Miley Member Posts: 94
    #7
    Glad to be done said:

    I'm with Alexandra.....  I

    I'm with Alexandra.....  I too want to be you.  I want to have 5 great years (I am already 1 in).  If I can get 5 great years out of my NED then I will deal with what comes when it comes..... 

    Thank you.  Like I mentioned

    Thank you.  Like I mentioned in my response to Alexandra - If I can be even a small source of hope and motivation for people that are earlier in this journey than I am - well that is a good thing. I remember when I was first diagnosed I wanted to find people that were like me - and still alive and kickin'.  Now maybe I can be one of those people someone else is lookng for!    

  • lulu1010
    lulu1010 Member Posts: 367
    #8
    My two cents...

    I was told Doxil usually makes numbers go up before they go down. It was not the case with me but that is what I was told to expect. Also was told there are patients living their lives and traveling and working on Doxil for years and some have been on for years and then had years of remission.

    Your story is an inspiration to me and I am sure others and I am sure you will continue to do so for a long time!

    Linda

  • Alexandra
    Alexandra Member Posts: 1,308
    #9
    123Miley said:

    WOW!

    Thank you for some needed perspective, Alexandra!  Just typing all of that did make me feel better!  LOL!  And I think back to my first year with all of this and how sick I was.   I was worried I would not see my next birthday - never mind the next 6!  Hopefully people seeing my story will help them to know that there can be lots of life to be lived after diagnosis.  I am in a new and different place than I was 5 years ago, and it has its own challenges.  But I made it here.  I am glad for that and it sure beats the alternative! 

    I have read several of your posts and you are always very much the cheerleader and motivator for a lot of ladies on here.  Thank you for that!  I also read through your bio - and man you have been through a lot!  Makes me feel very lucky!  I will say I also got an infection in my incision after surgery and when my doctor popped that thing open - YOWZA did that hurt!  

    At the end of the day we all do what we have to do and endure what we have to endure and go on from there.  Good luck to you and thank you for your kind words!

     

    That's me, 200 lbs of cheerleadin' fury

    I was a little fuc messed up yesterday night when I wrote my comment, so later I thought that it may have come out rather rude.

    But I did not detect any sarcasm in your reply, so I'm glad that you found it helpful.

    I've been back to work for the grand total of 7 days and already got a big-**** project due tonight. Up to my balls, ovaries, ying yang in spreadsheets and powerpoints. 

    I work in automotive, it's a good ole boys' club and it's already starting to affect my refined and ladylike vocabulary.

    Got to go. Y'all behave now Smile

     

  • His grace
    His grace Member Posts: 23
    #10
    Hope

    Hi Miley

    Actually your post does help me.  I was just diagnosed on 2/21/13.  Woke up from surgery and told that I have ovarian cancer stage 3c.  I am 38 years old and had none of the risk markers. THought it was endometriosis and cyst in the ovary (had that in 2006).  I have 2 young kids, the oldest turning 5 this year. I think I am handling this okay given and it is mostly from my faith in God.

    Just started chemo yesterday, 1 of 18 wkly taxol/ carbo regimen.  Praying that my body and counts will be strong and hold up to complete the 18 weeks straight.  If I could have 5 to 6 years "normal" living, I would be so happy and thankful.  And of course, the more the better.  Love being a mom and want to raise my kids up. 

    So you give me hope that remission can be for a long time (and of course, we all want to just be cancer free period).   I still pray and hope for that, one of those people where there is no recurrences. 

    Thank you for your sharing.  Because I think we are all on the same page and we can encourage one another as we deal with this.

    Irene

  • Glad to be done
    Glad to be done Member Posts: 569
    #11
    His grace said:

    Hope

    Hi Miley

    Actually your post does help me.  I was just diagnosed on 2/21/13.  Woke up from surgery and told that I have ovarian cancer stage 3c.  I am 38 years old and had none of the risk markers. THought it was endometriosis and cyst in the ovary (had that in 2006).  I have 2 young kids, the oldest turning 5 this year. I think I am handling this okay given and it is mostly from my faith in God.

    Just started chemo yesterday, 1 of 18 wkly taxol/ carbo regimen.  Praying that my body and counts will be strong and hold up to complete the 18 weeks straight.  If I could have 5 to 6 years "normal" living, I would be so happy and thankful.  And of course, the more the better.  Love being a mom and want to raise my kids up. 

    So you give me hope that remission can be for a long time (and of course, we all want to just be cancer free period).   I still pray and hope for that, one of those people where there is no recurrences. 

    Thank you for your sharing.  Because I think we are all on the same page and we can encourage one another as we deal with this.

    Irene

    Irene it is nice to meet

    Irene it is nice to meet you.  I was diagnosed 3C last January after my hysterectomy.  I got the "It looks like you dodged a bullet" when I woke up.  They got the sick ovaries out encapsulated.  IT was fond microscopically on 1 falopian tube and the two lymph nodes that my right ovary sat on.  She took out the whole shebang, did a pelvic wash, took my appendix, biopsies everything she could and took 27 nodes.  All was clean except for what I mentioned.  I am very lucky that my stupid gynecoligist who told me it was a simple cyst referred me to a great gyn/onc..  Together her and I kicked cancers **** and here I am today.  For today I am NED and I will cherish each of those days.  I do not know what tomorrow will bring but for today I am cancer free...

    You are not alone on this journey.  We will help you along and we will be at the end of the chemo tunnel to cheer you on.  Good Luck. 

    Gor forth and kick cancer's ****.  Remember You have Cancer, Cancer does not have you.

    Eileen

     

     

  • Glad to be done
    Glad to be done Member Posts: 569
    #12
    Glad to be done said:

    Irene it is nice to meet

    Irene it is nice to meet you.  I was diagnosed 3C last January after my hysterectomy.  I got the "It looks like you dodged a bullet" when I woke up.  They got the sick ovaries out encapsulated.  IT was fond microscopically on 1 falopian tube and the two lymph nodes that my right ovary sat on.  She took out the whole shebang, did a pelvic wash, took my appendix, biopsies everything she could and took 27 nodes.  All was clean except for what I mentioned.  I am very lucky that my stupid gynecoligist who told me it was a simple cyst referred me to a great gyn/onc..  Together her and I kicked cancers **** and here I am today.  For today I am NED and I will cherish each of those days.  I do not know what tomorrow will bring but for today I am cancer free...

    You are not alone on this journey.  We will help you along and we will be at the end of the chemo tunnel to cheer you on.  Good Luck. 

    Gor forth and kick cancer's ****.  Remember You have Cancer, Cancer does not have you.

    Eileen

     

     

    Miley (And anyone else on

    Miley (And anyone else on Doxil)~

    You mentioned you didn't use your hair.  Doxil doesn't make you lose your hair?  I didn't know there was a chemo out there that didnt mak e you lkose their hair

     

     

  • 123Miley
    123Miley Member Posts: 94
    #13
    Alexandra said:

    That's me, 200 lbs of cheerleadin' fury

    I was a little fuc messed up yesterday night when I wrote my comment, so later I thought that it may have come out rather rude.

    But I did not detect any sarcasm in your reply, so I'm glad that you found it helpful.

    I've been back to work for the grand total of 7 days and already got a big-**** project due tonight. Up to my balls, ovaries, ying yang in spreadsheets and powerpoints. 

    I work in automotive, it's a good ole boys' club and it's already starting to affect my refined and ladylike vocabulary.

    Got to go. Y'all behave now Smile

     

    Alexandra, I love your since

    Alexandra, I love your since of humor!  I tend to be a bit blunt and misunderstood at times as well - I think that will not be a problem with you and I!

  • 123Miley
    123Miley Member Posts: 94
    #14
    Glad to be done said:

    Miley (And anyone else on

    Miley (And anyone else on Doxil)~

    You mentioned you didn't use your hair.  Doxil doesn't make you lose your hair?  I didn't know there was a chemo out there that didnt mak e you lkose their hair

     

     

    Correct I have not lost my hair

    One of the side effects listed is hair loss or thinning.  I have not noticed even any thinning.  But I have had three treatments and have developed a really bad issue with the skin burning rash.  I think I would trade that for bald if I could!  LOL!

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