Thursday, January 19, 2012

Slow and Steady-Learning to Ride the Wave...

Full of thought, bear with me as I go from one thing to the next...If you know me, this is just Jen...If'll get used to it.  Just too much to say in VERY limited time.  Passionate about my journey is an understatement.  

      I'm a teacher by trade and a Melanoma patient because for some reason GOD saw it as a good fit.  Wouldn't have been my 1st job choice, but you know what...It's kind of a match made in Heaven.  So many things have been happening that lead me to think that I can be part of getting the real information out there about Melanoma and preventing so many young kids, mothers/fathers from ever going through the nastiness that I have endured and so many people I have met along the way.  

       Through blogging, my world has opened up and taken off.  I have met so many wonderful people and because of that belong to a group called the "BAD ASS MELANOMA WARRIORS".  I know it may sound strange to some of you,  a little cheesy, but these people are amazing and get me through some seriously dark times by just allowing a private, safe place to put all my fears and have them not thought of as losing hope, or needing a pick me up, or a conversation stopper.  These people are all in my shoes and I will be forever grateful.  

      Right now, I'm in the dream stage of figuring out how to meet some of them in North Carolina for the AIM WALK for Melanoma.  There is one is Houston I'm wanting to do as well just know sure of it's date.  The one in NC is Nov. 17th and it gives me something to work towards.  I've also thought about making it a mini or big family reunion spot but again right now it's just in the dream stage.  FAMILY, stay pending wanting to get all my ducks in a row before I shoot out my ideas.  I'm going to get everything set for Jeff, Zachary, and I to attend and anyone else interested would be a bonus....I'M inspired and moved to do it and to help spread awareness.  

     Melanoma is the Breast Cancer of the 1980's and more info. about prevention needs to be out there.  Too many wonderful people, too many friends, for me it is now personal.

On to the update about me today...

     When I left the house this morning, Jeff (the hubby) reminded me that even if an AMAZING all CLEAR happened, I shouldn't jump off the cliff in excitement, nor should I go to my deepest darkest valleys if it didn't as I have Melanoma and I will never be able to let my guard down.  This was VERY good advice for Jen as I can be that "jump off the cliff" excitement or down to the valley kind of gal.  It is for this reason which is why our relationship is just becoming richer as we experience so much as a TEAM.  I needed his voice of reason today as always as much as he needs my ENTHUSIASM.

      My SCANS came back STABLE!  STABLE is not a word I do well with.  I'm not a middle of the road kind of gal....I'm usually the all or nothing and def. the "both" girl.  Stable is so, well VANILLA.  Most people I know wouldn't necessarily choose the word STABLE to describe me anyway, but that is what I left with today....STABLE.  Fantastic.  My over achieving brain doesn't like it.  Without sounding too disappointed, stable is MUCH better than ACTIVE or GROWING.   The one area around my lung in a lympy node by my heart which is growing, but not enough to  measure.  

      I've been so busy, I haven't had a chance to BLOG and I have so much to say that it's paralyzing so I haven't written anything...I feel like a musician that has a song in her head that doesn't have access or the time to write it down.  I still have things to write about the dark valley our family hit a couple of weeks ago and how grabbing one another and staring into one another's souls and tears of fear, frustration, anger, love, admiration, and honesty all came out at once and had at it.  We hit a wall, it was dark, awful, scary, and terrible but we talked it out, faced our demons are are better because of it.  I want to write more, but Z is coming home in a bit and I just don't have the time.  I will...I want to, today is just about results.

     At this point, I'll learn to be ok with STABLE maybe that's a good lesson for me but what has taken me to the places in my life haven't been because I ever accepted stable or mediocrity, but with melanoma and it's daily every changing ways, I'm learning that stable is at least a good thing as this monster attacks and when it does it's rapid and unbearable.  I've been on both sides and at least am taking some drugs that slows it down.

        The doctors know BRAF won't work for me forever as it's already slowing down, but now that I'm off prednisone we are giving it a go on the full dose for 1 more month and will meet again to discuss.  At least there wasn't a need to change paths immediately.  I'm beginning to get these lumps that one of my fellow warriors has.  My dr. described them as a collection of white blood cells.  This one is on my neck and it's painful.  It's supposed to move around and more can show up.  The calousses on my feet hurt, and hair is def. more than just mild hair loss. My hair these days seems to be looking for a new place of residence...argh!   I may need to have a shave Jen's head party but not ready for that just yet.  I watch everyday as I slowly turn into a "Cancer Patient"  It's slow, but everyday, I notice.  It's hard to not wonder what your path looks like.  Stay in the moment, be present, arrive everyday.....that is all I can tell myself.  My eyelashes are nearly gone and they land in my eyes every min. as a constant reminder that something is inside of me that I'm walking around with and it is slowly trying to take over my vessel.  There is NOTHING glamorous about Melanoma.  NOTHING.

     For now, I stay on BRAF, pray the full dose stays effective in stabilizing and makes a breakthrough in shrinking.  Everyday it's just wait and hope and live for today.  They will try and get me in a trial in a month which would be gsk something and mek or I will start Yervoy.  I may not qualify for the trial as they need to biopsy a tumor and all of mine at this point are in organs.  Obv. biopsing an organ is NOT an option and we obv. don't want to wish for a new tumor to grow on my leg just so I can have this treatment.  The line up for all my options is tricky.  Melanoma is NOT a Cancer that you want to get.  THERE is no cure, but I can GUARRANTEE you I will fight with my everything to see you at the finish line where they have a solution.


      We also know that it can pass the placenta to your unborn baby if you have advanced disease, it destroys families, it leaves children without mommies and daddies.  IT'S UGLY!  If I can stop one person from experiencing any of the things I have, it is worth it.

I'm in it and yes, have decided to see the gifts I bring, but I guarantee you, I would not wish this on my worst enemy.  PLEASE, this is not intended to scare you or to think I've lost hope.....I HAVE SO MUCH HOPE AND SO MUCH FIGHT.  I write this way to make my message Clear.....ONCE YOU HAVE MELANOMA YOU ALWAYS HAVE IT.

I've always wanted to donate my organs to help someone else in the event that I died and because of melanoma I can't....Melanoma is vicious.  I WANT IT OUT SO BADLY.

Sharing Eric's story...

ERIC was such an inspiration.  Please be informed.  Some graphic info here, but also such a fight.  IF you are thinking of TANNING, ask yourself "IS THIS WORTH IT"  CONTINUING ERIC'S FIGHT, CATHERINE'S FIGHT, SAMANTHA'S FIGHT, RANDI'S FIGHT AND SO MANY OTHER'S THAT BATTLE THIS EVERYDAY.  It is a monster and together we can help one another.

David Robles, MD, PhD - Dermatology


I live now in a world where I am writing a WILL, filling out disability paperwork, and facing things I never would have thought I would have to at 35.  I plan on living a full life and beating this, but at the same time, I must face reality.  I'm a smart girl and will fight with all I have.  The only way to beat something is to know what you are up against and FACE it.  FACE THE FACTS, AND PULL THOSE BIG GIRL PANTIES UP AND DO IT!

now, back to silliness, giggling, skipping in the rain, and BEING IN THE MOMENT...


  1. Hi my name is Joshua Dodd. I am in remission of stage IV metastatic melanoma. I was wondering how to join the Bad Ass Melanoma Warrior group? I live in Bay City, MI. Do you have a Facebook page?

  2. Writing a will at your age isn't easy, and it's understood that it can be painful. It's good that you're upholding the interests of your family, but other people may want to take advantage of this, so it's a good idea to at least make a lawyer read your will to ensure that it won't be easily challeneged, allowing your loved ones to benefit.
    David Munson @ David A. Munson, PC Law Office