Monday, April 9, 2012

Can we talk?

    Woman to woman now... those men who have accidentally stumbled onto this blog can come back tomorrow when I'm writing about my Dad's carpentry and engineering stuff...

     I know I said I didn't want to give this "dragon" any more paparazzi attention than necessary, but the more I think about it, the angrier I get (angry is a good emotion at times) and the more I realize that I would be doing a huge disservice to women everywhere (anywhere) if I didn't speak up and speak out.  I have nothing to be ashamed about.  Nothing to hide.  I did not ask for this.  I did not 'deserve' this.  No woman does.
     I'm writing this because I recently found out I have a rare cancer, and have been astounded to learn that more women aren't being told about it.  Let me digress...
     Before I joined the witness protection program (got married for the first time), I made the mistake of dating a guy who wasn't monogamous like I was.  He gave me a little gift that later developed to be the kind that keeps giving... HPV.  I got rid of it without ever re-gifting it to anyone else, but no doctor warned me about all the other things that would come from that one little present.
    Fast forward over the next thirty years ... Abby Normal PAPs.  Cervical dysplasia.  Cryotherapy in 1989.  More Abby Normals.  The dream of having a house full of kids disappeared.  Tubal ligation.  Thermal ablation in 2005.  Hemorrhage.  Partial hysterectomy in 2006 due to Abby Normal uterine wall thickening after the thermal ablation.  Here is where things get hinky...
     The female doctor I had before the thermal and hysterectomy refused to take me back as a patient because I'd had a hysterectomy and "no longer need to be examined."  I didn't accept that answer and went back to see the doctor that did my hysterectomy. 
     I continued to get annual PAPs, and for five years they were all normal until my PAP in December 2011.  Abby Normal again.
     Two colposcopies and biopsies later, and I'm told I have VaIN-2 (Vaginal intraepithelial neoplasia ~ stage 2).  It is caused when the HPV related dysplasia cells can't find anything else to attach to (because of a hysterectomy) and so they pick on the vaginal cuff.
    VaIN does not have symptoms, and is only detected by PAPs, an observant GYN and colposcpy biopsy.  Here is the kicker part though... If a woman does not continue to get annual PAP exams, it may go undetected until it is too late to treat.
     Not that the treatment options are acceptable.  First thing they want to do is have you use a chemo cream 'up there.'  Efudex.  I've used it for skin cancer on my face.  Not fun.  Blisters, peeling, oozing, sloughing off of skin.  Yeah, right... and you want me to use that where????  The cream is just as messy as that wonderful yeast infection cream, and I can just see all of my pieces and parts 'down there' getting burned and sloughed off as it works its way in, around, and out of my body.  No, don't think I want to do that.  What is this?  The Middle Ages where women are still burned at the stake?
     The other options aren't much more pleasant.  Laser surgery.  Surgery.  Both with complications that can include skin grafts, reconstructive surgery, partial vaginaectomy (yes, really, that is a word) or full vaginaectomy.   Bypass loss of sexual sensation and go straight to loss of sexual function.  Oh, and death.  Did I mention that the treatment might just make the cancer worse and that the cancer will most likely come back?
     I turn 50 in less than a month, and I love the intimacy between my husband and I.  I love being with him, touching him, hugging him, kissing him, laughing with him, dancing with him, playing Yahtzee with him.  I'm not giving up the intimacy part of our marriage or any other part of our relationship.
     My most recent biopsy (the 3rd) shows that it is actually more serious than they originally thought.  VaIN Stage 3, or Vaginal Cancer Stage 0.  The "specialist" wants to do surgery.  No, I don't think so.
     I'm trying now to get back 'home' to Florida so this land-locked mermaid can put her feet back in the warm Gulf waters and lie back on the white beach sands to try to heal this dragon from within.  I will seek a 2nd opinion when I get there and hopefully land a job with benefits before or shortly after I get back.  I feel like the stress of being in Texas for the past 18 months contributed to this 'dragon' developing.  Fortunately, indications are that it is a slow-growing cancer, so I have time to think... and time to live.
     What I'd like to ask now is this ... why aren't more women who have had hysterectomies because of cervical dysplasia being told to continue to maintain their annual exams?  Not that I can imagine any would want to consider the treatment options... but at least they would be able to consider what they want to do.  At least they could routinely monitor it before it becomes something worse.  Why are we being discouraged to get annual exams?  Why aren't women being more fierce with their bodies?  Why aren't we demanding better treatment options than ones that leave us with little or no options for a quality life?  I bet if you gave those same options to a guy, he'd not just say no, but he'd say hell no.

Love like there is no tomorrow...
      Me... I'm going to settle into getting PAPs every six months to watch, wait, and monitor.  If the current lesion can be removed without any resulting loss of function... I might consider it.  But I want to know all of my options first.  I'd like to believe that I will die an old woman wearing purple while making love with my husband before VaIN or cancer gets to a point of impacting my life.  Because for me... I want quality... not quantity.  And a life without that aspect of my marriage, is not a quality life.


  1. Cindi, this post has convenced me to go have a pap done.. I was told the same thing and had my hysto over 10 years ago,I turned 50 back in December.
    Your comment:
    I turn 50 in less than a month, and I love the intimacy between my husband and I. I love being with him, touching him, hugging him, kissing him, laughing with him, dancing with him, playing Yahtzee with him. I'm not giving up the intimacy part of our marriage or any other part of our relationship.

    I always try to put the shoe on the other foot and see it in my partners eyes... If for some reason(out of your or his control) your husband would not be able to be intiment with you, you would probably find much comfort in all that you two do have, and it sounds like there is so much love in your relationship that whatever the outcome you two will be ok. I will continue to keep you in my thoughts and prayers that this dragon does subside and disappear.

    1. Yay! Baring my soul (pun intended) was worth it if just one woman makes a decision to be fierce with her body!

      There is much love between my husband and I, and I know that whatever happens we will survive this. We do have a lot of fun together (outside of the bedroom) as well, and are best friends.

  2. Oh Cindi, make that two you have touched.
    I am due (overdue) my PAP smear and have been putting it off because life keeps getting in my way. I will put it off no longer.

    Our intimate life has gone due to my partner's health. I miss it. It is not all of our relationship, but it does matter.

    Do what is best for you.

    Hugs from afar.

    1. Yay!!!! I know it is something that we all "really" look forward to [enter sarcasm anywhere] but we need to take care of our bodies!

      I've always believed that if you can have a good time outside of the bedroom, it will carry you through those times when things don't work in the bedroom. That is why I value my friendship with David, our nights playing Yahtzee and kitchen dancing, going fishing on the boat, and just enjoying our time together. I miss him now, being states apart from each other...

  3. I had a pap smear only a month or two ago, Mine have always been normal. I get a reminder letter when I am due and I always go WTF it's been 2 years already? Then I slouch off and have it done. Healing energy to you x

    1. Thank you, Kim. So glad that you 'are on top' of things [yes, pun intended ~ it is my very warped sense of humor that I survive on most days.

  4. I'm so glad you fought for what you knew was right. That's terrible that they tried to lead you astray on getting the quality care that's vital to a woman's health. Thanks for sharing your story so that this won't happen to other women. Sending lots of healing thoughts and energy your way.

    1. Thank you, Amanda! I know that regardless of what happens, I am going to enjoy every part of life that I have!