Tuesday, January 24, 2012

Information coming in at a rapid pace...Lots of new posts read below:

Check out this article....do you all take advantage of the free subscriptions to Cure Magazine? It's a great free resource! They did an issue focused on Melanoma:


The combo Yervoy and BRAF treatment or that with MEK inhibitor may be next in my line up.  Dr. Hwo that is discussed is on the team of oncologist that works with Dr. Kim, my medical oncologist at MDA...interesting and informative for all.




http://curetoday.com/index.cfm/fuseaction/article.showArticleByTumorType/id/826/tumorCategory/Skin/article_id/1693

COMEDY RELIEF...I LOVE Animals, I love my Mr. Jenkins & Sasha...

Sasha is my Pretty Princess Lap Kitty that pretty much knows mamma's moods and won't leave my side.  In fact she's so with it, that I believe that she knew I had Melanoma before I did...Mr. Jenkins on the other hand, gives us some great entertainment.  He also provides some 5am motor conoodling snuggles for mom every night...To say these guys are not my children...Well, they are as much part of this family as any of us...Thanks guys.  Hope you are enjoying your new toys, scratching posts and heated beds.  YOU put smiles on mom's (and us all) face ALL day long.
LOVE~

 I mean really...How can you not smile

After a long day at MDA, Mr.J felt the need to inspect all of mommy's new medicine. ;-)  BIG SMILES


Addressing the Elephant in the Room...

     I'm am blessed to be surrounded by so much support and generosity.  I realize relating to me at times can feel helpless and overwhelming on your part.  As much as both sides tends to feel isolated and with their hands tied, I'm blessed with an open heart that is willing to hear the hard stuff and open to being open.  I know this isn't easy for everyone and everyone handles themselves differently in situations like these.  


     I know I may die...heck, we all are going to die and none of us know when.  Somehow when a stage 4 melanoma diagnosis hits the airways at times things get awkward in relationships and many things change with what seems to be over night.  I have experienced a lot of  awkward moments in friendships, hardships within family members near and far, and know that in the end being open and honest with everyone is really the only way to be.  


      I received this email from a very close friend that I think so eloquently expresses what many close to me have been feeling but unable to put into words.  No worries, I asked this person before posting, but if you can relate I completely understand. PLEASE know I understand this is hard....It's a hard for us all and I get that.  I have many people that feel like because they are not here, they are not helping.  Please know that is not the case either.


    I'm focussing hard down here on keeping stress to a minimum, and staying as rested, active, and as positive as I can in my mind as I know that has a huge effect on the immune system.  Hopefully I will see this to a cure, or at least all this treatment I am enduring let's me see the NED (No Evidence of Disease) Diagnosis.  I do believe in miracles.  In the meantime, know that I am content, I am happy and really HAPPY TO THE CORE IS WHAT LIFE IS ALL ABOUT.  We don't take all the stuff with us, so we are just focussed on keeping it simple.


The email:


Hey Jen,
Just wanted you to know that I'm thinking of you and feeling kind of bummed about what a crappy friend I've been. I won't lie, I felt a little "weird" after our last visit. Don't get me wrong - I loved seeing you and spending time with you. I guess I'm just frustrated with myself. I'm frustrated that I don't know what to do or say. I'm frustrated because I know that nothing I say can make anything better for you - I can't make the cancer go away. I'm frustrated that I can't seem to get my sh*t together so that I can be there for you more. I'm also frustrated that I can't truly 'relate' to your situation. I can try, but I don't know what it feels like to have cancer. I don't know what it feels like to go through what you are going through.
I'm so glad that you have found a group of "warriors" - people who can really relate to your struggle.
I want you to be able to be open and candid with me, but I also know that it isn't the same as talking to someone who is living it the same way you are.
I feel so guilty every time I complain about anything in my life. I know that isn't your intention, and I know that you still want to be able to talk to me (and your other friends) about "normal stuff", but I can't help it, I just feel so weird because I know that you have it so much worse.....

Anyways, I just wanted to be honest with you and let you know that my heart and my soul are with you, even if my brain and my emotions are still trying to figure out how to handle it. This is hard stuff - and I'm okay with it being hard. I'm just going to keep trying to figure it out. Keep trying to figure out the best way to be your friend. And you can tell me what you need. You can tell me what you need me to do as a friend.

So, I guess this is my apology for not handling everything the best that I could have, and my promise to try to do better.
I love you Jen, and it rips me apart that you are going through this. And, I would be honored to walk with you in November :)

Hope you had a good weekend and I will talk to you soon.



    I NEVER FOR ONE SECOND FELT LIKE I HAD A CRAPPY FRIEND, BUT HONORED TO CALL THIS PERSON A TRUE ONE AS WRITING THIS DOWN WAS COURAGEOUS!  MY HEART ACHES TOO AS I WOULD HAVE THESE SAME FEELING AS WELL AND JUST WANT TO FIX SOMETHING SO REALIZE I CAN EMPATHIZE ON THAT PART TOO.


 Here is another wonderful thought process to think about....I live everyday to not have any of these regrets and I think I'm doing a pretty good job.  How cool to have received this contentment  at age 35, whether that means it's with me for 60 more years or 1...I'M HAPPY AND I'LL STAY THERE.  


This has made that elephant in the room go away and I'm such a lucky girl to have all these kinds of people in my life.  Even though you are not here....YOU ARE ALWAYS IN MY HEART.  That goes for friends and family near and far.  Even when you feel like you are doing nothing.  I feel your support and I am grateful.  <3



LEAVING YOU WITH:
THINGS TO THINK ABOUT...


http://www.huffingtonpost.com/bronnie-ware/top-5-regrets-of-the-dyin_b_1220965.html

Head, Neck, and Throat appt: "What the $#^@ is growing in my MOUTH!

     So, yesterday I got introduced to the Head, Neck, and Throat Dept. of MD Anderson.  I went to ease my mind that the sores in my throat are not Basal Cell Carcinomas or new melonomas that can be caused from the Zelboraf.  Let's face it, anytime anything new pops up on you you panic....Prob. in general, but you really panic knowing your diagnosis of stage 4 melanoma that is in you and trying to take over your body daily.


    I don't take chances and the "watch and wait" mentality doesn't work for me in my situation.  The Dr. said they didn't look like anything and I had the choice to "watch and wait" or cut it out to see.  I'm optimistic but at the very least bumps in your mouth are annoying.  I said...."TAKE THEM OUT!"  EMPHATICALLY.  My local derm. also didn't think my mole in 2006 was anything either...ok, stage 3C melanoma.  Take it out!


     She thinks they were warts like on my face.  AWESOME!  (Sarcasm)  I had a camera/scope tube thing inserted into my nose to take a look all the way down to my larynx through a camera....Crazy huh?  Anyawy, she numbed it, decided the thing on my tonsil she would leave because to take that one off would be really painful.  I also have an ulcer in my mouth that I am seeing a specialist for tom. before dermatology.  Below are the pix of my ulcer and the biopsy on my throat from yesterday and today:

The ULCER...So painful...Seeing someone tom. to see if they can provide relief.  



Yesterday's shot of the snip they cut off...It burns, couldn't talk yesterday...



What it looked like this morning...I think it's healing...Still burns but it is feeling a bit better.  All of it definitely uncomfortable.



Now, WE WAIT for the results....The Hardest part!

OK, HELLO? Been at MDA for 5 years....STILL uncovering resources I never knew existed. ASK! KNOWLEDGE IS POWER...ASK PEOPLE!

      I have now been an MD Anderson Patient since 2006 and the funny; or sad thing, is I feel REALLY comfortable there.  Kind of like a second home.  WIERD, I know it's just that I'm there so much that I have learned to make my visits more of an adventure rather than a drag.  There is so much to learn and keep learning and so so many resources.  My eyes are finally open to receiving it all as when I first became a patient EVERYTHING so overwhelming. I didn't understand the process and ALWAYS GOT LOST.  Nick, one of my fellow warriors calls MD Anderson "Most of the Day" Anderson and that unfortunately is the case.  I've learned to realize this and make my visits more fun by anticipating that I'm going to "Most of the Day" Anderson, rather than just a Dr. appt. at MDA....Really helpful to the psyche.  Nick, I LOVE IT...Considered it borrowed.  


      Taking a detour which "JEN" frequently does, I promise I will get to yesterday's appt and Head and Neck, but I forgot to post how excited I was to find more resources I never knew existed for over 5 years of going to this place.....5 YEARS!  5 YEARS I never knew "The Levit Family...The Learning Center" even existed.  Picture BELOW:



     It is located in the Mays Clinic.  I think our doctors just assume we know all this stuff because they are around it all day long.  I had this epiphany when I started feeling like my language seemed "Normal" jibber jabber to all my friends and it hit me too that all of a sudden I was becoming fluent in MD Melanoma Anderson speak as well....eek!  I've never been "normal", but I've always been able to relate...especially to people... but MD Anderson and melanoma language is so fluid for me, I started not being able to relate to normal life things.  


      I felt isolated with my friends and my family and MD Anderson felt "Normal".  Kind of when I felt the need to educate.  Anyway, back to this Learning Center I discovered after speaking with my Pychologist through Psychiatric Oncology.  Btw, didn't know about this in 2006 either....Oh my gosh, these people "get it" and instead of just going and talking to Just someone they are actually "really helpful"  What a concept huh?  HELPFUL...GRIN...It's helped just me, Jeff and I and I'm so grateful to that dept.  I didn't find it because I waited for my dr. to tell me I needed it, but Jen actually listened to herself.  My doctors would prob. never diagnose me with depression or anything like that because I'm so energetic, full of silly, and that upbeat kind of person....It's ok to say it....kind of annoying at times, but that is me.  I'm happy.  Even happy people fall down and I've learned to know my body and I knew that I needed to talk to someone. It's important to know yourself.  I essentially got the referral for myself.  I started going and my psychiatrist took me over to this library place and I was in awe as to all the resources...The internal dork in me exposed once again.
;-)


     If you are an MD Anderson patient, please go!  They have information on caregiving, free really well written pamphlets to take, computers.  You can check out videos, books.....ALL FOR FREE...I mean, we are really paying for it and if we don't know about it we won't use it.  It was like my new Disneyland of knowledge.  I learned how to download videos on MY MDAnderson login and just such a wealth of free help at your finger tips.  HIGHLY REC. PLEASE CHECK IT OUT!

Monday, January 23, 2012

It's funny how the world is connected...I meet real life Angels EVERYDAY!

So, when I discovered I found out that I had stage 4 melanoma I was scared.  Understatement, right?  I had a choice...I could burry myself in my fears and literally hide, or I could talk.  Well we all know which route I have taken and let me tell you because of it I come across angels everyday.


In the very beginning of my journey with stage 4 I found myself walking around knowing something was trying to kill me but looking completely normal and fine.  I felt like I was hiding a tremendous secret and very early on I made the choice to not shackle my body but release the demons and talk about it.  I was in the dental chair and out came my story.


Low and behold, my dentist told me a story about this organization her cousin started and is the president of.  This organization is called:  Can Care


http://www.cancare.org/


I picked up the phone, called, and also clicked on the link:  "Looking for Support"  The next day a lady called me with stories of hope and she told me based on my information I had submitted she felt like she had the perfect person/sponsor to link me up with.  This is how I met:


Hilde Stapleton


What a wonderful and inspiring lady that gave me hope upon our 1st conversation.  We emailed a couple of times and I was just happy I knew I had someone to call.  Time went on, treatments started and lives got busy, but I always knew I had her story to get me through.  Hilde has been through the ringer with Melanoma and that was back in 1999 when survival really wasn't even thought of as an option.  Guess what?  Hilde is still here.....Hilde "gets it" and I feel comfort with that.   I was blogging, but my friendships through blogging expanded.


I got invited to become a Melanoma Warrior.....BEST GROUP EVER!  and guess who was there.....YEP, HILDE WAS THERE.  What a small world.  Anyway, through that group and facebook we began corresponding more.


Just last week I get this email...


Hi I just painted an angel for you to wish you better. Hilde


Along with this beautiful Painting that she painted for me "just because"  An angel for sure!
Thank you HIlde....Just knowing you gives me strength....The painting is beautiful!  Lucky girl!


Friday, January 20, 2012

Interesting Article...

  I was informed and explained that Zelboraf could cause squamous cell carcinomas, but never saw it in an article.  Thank you to the Fowler's...thanks Fritz, he found this and sent it to me so I thought it fitting to post it to my blog.  They check me for carcinomas everytime I go in.  The study I talked about is one they use in the article using a BRAF like combo with the MEK inhibitor.  In my case, in order to qualify I need a tumor to biopsy and all my tumors have been removed for other therapies down the line.  The ones that are left are in my organs. Obv. we don't want to biopsy an organ.  Makes it tricky as I qualify for it in every other category.  I obv. don't want another melanoma, but this drug sounds promising.  If I do need a new path next month and there is a need to switch.....Yervoy aka. (Ipilimumab (also known as MDX-010 or MDX-101), marketed as Yervoy,) is also an option.  


http://www.sciencedaily.com/releases/2012/01/120117191417.htm


KNOWLEDGE IS POWER....


At this point all this stuff is 2nd nature and the language of melanoma is so familiar that it's simple for me.  I was telling a friend the other day that sometimes I feel more at home at MDA than out in the real world....lol, I think I've been spending a lil too much time there, you think?  lol  I can definitely speak the language and it's nice to just feel understood sometimes.  They just understand me there and it's comforting....


love you all!


Jen

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 not...you'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.


http://www.aimatmelanoma.org/en/aim-for-action/1158/1159/charlotte-2012.html


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 well.....my 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.


Please everybody, wear sunscreen, DO NOT GO TO A TANNING BED, GET CHECKED....MELANOMA SHOWS NO SYMPTOMS UNTIL IT IS TOO LATE.

      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.  


http://www.myfoxphoenix.com//dpp/health/mother-passes-deadly-cancer-to-baby-01182012


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.


http://www.youtube.com/user/EricNJill?blend=1&ob=video-mustangbase





David Robles, MD, PhD - Dermatology










MELANOMA IS NOT "JUST SKIN CANCER"  JUST BECAUSE IT'S CUT OUT, DOES NOT MEAN IT IS GONE.  BE DILIGENT, GET CHECKED.  DON'T WAIT, YOU AREN'T OVER-REACTING YOU COULD SAVE YOUR LIFE.

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...
WEAR SUNSCREEN!  LOVE YOU ALL <3

Wednesday, January 11, 2012

Good mole, bad mole? How to spot 'em

Check out this link and click on the "Dear 16 Year Old Me" Video at the bottom of the article...

http://www.gladstoneobserver.com.au/story/2012/01/11/good-mole-bad-mole-how-spot-em/


BE INFORMED!

Saturday, January 7, 2012

One of those days...

Not much tonight in the eyes of anything profound or insightful, but rather a shout for a HUG.  I'm feeling misunderstood today.  Tired, achie,  and kind of feeling like being with my melanoma peeps....Where I don't have to say anything but they know what you are thinking.  I'm tired of being such a weak link for our family (it's how it feels tonight..I know in my heart I'm not, but still feelings are real)  I feel guilty for not being able to see an end of my care in sight.  Just down.  I want to be able to support my family like I used too.  It gets old being the one always needing something.

Yes everyone, Jen gets down...more often than you might think; however, I do admit it and somehow in all this HELL (pardon me) that has gone on, the little "downs seem to be able to be turned around quicker than they used to.  I had a pitty party post today on Facebook.  Here is what I said:

Having one of those exhausted, achie days where my words and actions are being misinterpreted. It's been a long morning. Going to rest and hopefully wake up forgetting about it. The truth is, sometimes the simple things in life are the hardest. Impossible to be UP all the time. I'm frustrated.


I was ok, and then I said:


I get so mad sometimes as to the stress Melanoma has on family...as we all know so well, money, tiime, childcare, worry, friction, the roller coaster and all in the center of the storm we sit trying to not feel responsible but with our lights shining high, our head up, our face feeling the wind just to FEEL and sometimes just sometimes this BASTARD just feels like too much for us all.  I think I'm making some serious tear fuel for the fight tom.  Night all.....


Still reading that darn paragraph over and over again....up down, up down...Mostly a down day.  Conflicted in so much thought.  It's what I do though...I go go go until I explode and well, I was due for an explode like a geiser that hasn't released it's steam in decades.  :-o


In scrolling down my facebook page after my post, I read from a friend this quote that I must borrow because immediately it put my perspective back:


I'm glad that I have positive people in my life that can give me perspective when I feel tired. (Thanks Dorian!)  This is where I feel like my angels are with me..."why did I have to see this not 15 min. into my pitty party post.....someone is watching over me...too many coincidences but read what I read and it def. can turn a pitty party around....

below is something to think about:

Very powerful....
There was a blind girl who hates herself because she was blind. She hated everyone except her loving boyfriend. He was always there for her. She told her boyfriend, " If I could see the world, I'd marry you". One day someone donated a pair of eyes to her. When the bandages came off, she was able to see everything, incl...uding her boyfriend. He asked her, " Now that you can see the world, will you marry me?" The girl looked at her boyfriend and saw that he was blind. The sight of his closed eyelids shocked her. She hadn't expected that. The thought of looking at him for the rest of her life led her to refuse to marry him. Her boyfriend left her in tears and days later wrote a note to her saying; " Take good care of your eyes, my dear, for before they were yours, they were mine." This is how the human brain often works when our status changes. Only a very few remember what our life was like before, and who was always by their side in the most painful situations. Today before you say an unkind word - Think of someone who cant speak. Before you complain about the taste of your food - Think of someone who has nothing to eat. Before you complain about your husband or wife - Think of someone who's crying out to GOD for a companion. Today before you complain about life - Think of someone who went too early to heaven. Before you complain about your children - Think of someone who desires children but they are barren. Before you argue about your dirty house someone didn't clean or sweep - Think of the people who are living in the streets. Before whining about the distance you drive - Think of someone who walks the same distance with their feet. And when you are tired and complain about your job - Think of the unemployed, the disabled, and those who wish they had your job. But before you think of pointing the finger or condemning another - Remember that not one of us is without sin and we all answer to one MAKER. And when depressing thoughts seem to get you down-put a smile on your face and thank GOD you're alive! ~Zee



Well, as my day went it was filled up UPS and downs and quite frankly more downs than UPS as this day was a major struggle to stay UP.  It was one of those days were I didn't really want to talk to anyone because no one really got my feelings and I was tired so it was harder and harder as the day progressed to get back up.  Tonight, I'm reading that quote and I'm promising my family and myself that NO MATTER HOW DOWN I FEEL, I'm HERE AND THAT IS AN UP.  re-reading this paragraph so I can have sweet dreams.   


Please do to all of you as well... Signing off tonight a bit less chipper, but that's what it is....PITTY PARTY or not, I think we can all agree....


WE HATE MELANOMA AND THIS IS WHAT DRIVES OUR SUPER HUMAN STRENGTH AT TIMES...being REAL is what causes us to make a difference!


BTW, a teacher supply catalog came in the mail today....a SUPER BIG ONE!  How funny that that little thing was a HUGE UP for me today.  The little teacher dork in me got so giddy excited.  I guess I still have the bug....So many fun things, I just love that stuff.  


POOR ZACHARY, BUT HE LOVES IT TOO...PHEW, at least while he has no choice that is, grin

Monday, January 2, 2012

2012 IS the year...A reflection...

Melanoma...I GLARE into your face directly and I'm not backing down...  2012 IS THE YEAR OF MIRACLES!

WAS THIS THE SUMMER I GOT MELANOMA?  WEAR SUNSCREEN...

I never went to a Tanning Bed, NEVER cared about a tan, but I did grow up in CA going to the beach on vacations in the 80's during a time when sunscreen happened sometimes and hardly talked about.  I went to the beach without a care in the world to have fun.  I have gotten a sunburn...I never even thought about Melanoma...

All it takes is one sunburn...just one!  This DOES NOT RUN IN MY FAMILY...


REFLECTION:  Adios 2011...Welcome 2012. REFLECTION and New Years always go hand in hand. A bit of where I have been and where I am going...  A bit of this, a bit of that, but always a tim when I ask myself...HOW CAN I BE BETTER?

This reflection time truly makes me realize that I DEFINITELY DO GET KNOCKED DOWN, BUT I AWLAYS GET BACK UP AGAIN.  The more that happens to you, the more you realize you can be ok on the other side.  FIGHT!  Even if I am not physically here, this year has brought a contentment that I will treasure forever and that is something that can never be taken from me.

...A little information about my journey & my hopes in terms of where I see myself going with it.  

 MELANOMA, IT'S NOT JUST SKIN CANCER...Melanoma as much as I wish I didn't know you, I do and rather than living fighting the diagnosis, MELANOMA in many ways you have made me better.  I choose to teach through you, lead through you, and INSPIRE!  Never say you can't.  I am going to be the ONE to beat this and YOU are going to be right there with me.

LET'S DO THIS!

2011 was the year of finding my peace, contentment, purpose, and light through the darkness and paths I never thought were meant to be.  2012 will only be an extension of that.  Opening my eyes to see things and learn things about myself that I would have never let in or allowed myself to see "BM...Before Melanoma"  My contentment is here, my happiness is NOW...I'm listening to signs and I know now I don't drive my ship.  I can't choose the things that happen to me, but I sure can choose how I react to them.

I was having difficulty realizing that I have purpose other than Cancer and losing myself in being a stay at home mom, which I wouldn't change for the world but sometimes if you are "JEN" you are so hard on yourself that you aren't doing enough or making enough of an impact or being the best you can be. 

I also missed being at the top of my game being a teacher and with CANCER again I felt like people looked at me differently and I couldn't just be Jen the mom or Jen the teacher, I was Jen that girl with CANCER...AGAIN.  DAMN! I didn't want to be a victim, I wanted to do more and was fighting the fact that treatment is exhausting and I had to accept the fact that treatment was my job and that is ok.  Had to let go of a lot. Had to accept the fact that it was ok to be "Jen with CANCER" and turn that into something meaningful.

 I have always had a journal, but my blog was set up for me by a friend.  WOW, am I grateful Mrs. Heather Berg!  Blogging has reconnected me to my past, opened up a whole new world of new friends fighting this same fight with me and has enabled me to TEACH, help others and motivate which is  in my blood and in turn ends up helping me define my purpose with and hopefully soon without the CANCER label.  

It has helped me find my way through teaching again and motivating others in a different way.  I want to touch lives...I now know I am.  I have met some amazing warriors through blogging and it's an understanding I can't explain to you. I can relate to an 80 year old man as much as I can a 15 year old girl...I HAVE MELANOMA AND SO DO THEY.  They just "get me without words"   I am so thankful to all the precious gems I have met through this journey whether they be my personal angels at this moment who have succumbed to their battle or those fighting the fight with me.  I am also thankful to my amazing support system of family, friends, and neighbors all the same.  I am blessed.

My army of support is even larger with the friendships and support groups formed through Facebook and blogging and just a language that is understood.  There is something about walking in the shoes that I have on that is comforting.  My only wish is there wasn't as many people that there are out there.  OUT MELANOMA...OUT...UN-INVITED IN US ALL.  ALL OUR JOURNEY'S ARE PERSONAL AND LIKE US ALL, WE ALL HAVE OUR STORY AND OUR PERSONAL MUSIC TO SHARE.  LET'S SHARE IT!

It has been so helpful and I want to say thank you to making my Melanoma world seem more manageable and less lonely.  Although I find comfort in similarities I do realize like in life WE ARE ALL ON OUR OWN JOURNEY, OUR OWN PATH AND NOT ONE OF US IS THE SAME.   That is the beauty of LIFE...Let's be open, let's share.....LEARN FROM ONE ANOTHER, KNOWLEDGE IS POWER!

A TRIP DOWN MEMORY LANE

SEPT. 2006  THIS IS AFTER I HAD WIDE LOCAL INCISION IN JUNE WHICH DIAGNOSED ME WITH THIS BEAST.  IN AUG. THEY FOUND A POSITIVE NODE THROUGH SENTINEL LYMPH NODE BIOPSY AND HERE I AM GLAMOROUS AS EVER SPORTING THE LOVELY GOWN COURTESY OF THE GREAT DESIGNER...MD ANDERSON!

EVERYONE HAS THEIR STORY TO TELL WITH ANYTHING YOU DO AND IT'S NO DIFFERENT WITH MELANOMA.  Even though there are many similarities with this disease, I know that my journey is mine and yours is yours so by no means to I wish to say It happened to me, so it will happen to you, but more to inform and educate.  Knowledge IS POWER and it definitely is comforting knowing someone that has gone through what you have.  For me, writing like I've said before is therapeutic for me.  It's almost like it puts it out there so I have to face my fears.  If I say it, I've committed and I intend on following through.  It's motivating for me.

AFTER MY COMPLETE LUMPECTOMY IN MY RIGHT GROIN
I HAD NO OTHER EVIDENCE OF DISEASE IN THE ORGANS WHICH MADE ME STAGE 3C. OR 3B (CAN'T REMEMBER)  AT THE TIME, I THOUGHT THE TREATMENT AND SURGERY SEEMED AGGRESSIVE AND CONSERVATIVE, BUT I WAS 30, ENGAGED, WITHOUT CHILDREN AND HAD A LOT OF LIVING LEFT TO DO.

I00% don't regret my decision.  

There are many stories out there about tanning beds and the risks which I would say NO TAN IS WORTH THIS, but I'm talking to those people in which a tan was never really important or in my vocabulary.  I grew up in California and travelled to Santa Cruz most every summer for family vacations and yes, I can say I have gotten sun burns, but never ever would I say I was a sun worshiper or worked at a tan.  WEAR SUNSCREEN!  I even remember wearing it, but...all it takes is one sunburn.  It doesn't run in my family, melanoma just picked me.  Cover up, be informed.  Don't be naive.  

My mole didn't even look ugly or weird, all I can say is I just started needing to go around it shaving...but stage 3 melanoma....NOT AT ALL WHAT YOU WOULD THINK.    THIS IS THE YEAR, MY WORLD, MY LIFE AS I KNEW IT CHANGED FOREVER.




MY INCISION STARTED AT MY HIP BONE AND WENT ON FOR 14 INCHES...IT'S A GRUELING SURGERY TO RECOVER FROM...


I KNOW YOU ALL ARE THINKING...
"GLAMOROUS, RIGHT?'



...SO COMFORTABLE, NOT!





PATHETIC MAYBE?





MY NEW LEGS AND FEET FOR ABOUT A MONTH...FANCY!


DETERMINED TO FIGHT FOR MY OLD LEGS BACK, BUT NOT PREPARED FOR THEIR LIMITATIONS...


AT THIS POINT I HAD NO IDEA THAT THE TERM COMPRESSION STOCKINGS WOULD MEAN SO MUCH!


4 WEEKS AFTER SURGERY....A BUMP IN THE ROAD...THAT BAG YOU SAW IN THE PREVIOUS PIX, WELL THAT CAME HOME WITH ME TOO.  ALONG WITH THOSE TWO DRAINAGE TUBES IN MY LEG.


WE NAMED MY BAG "CHITLAN"  HI 
"CHITLIN"  NEVER KNEW I WOULD REMINISCE ABOUT YOU AGAIN....I COULD ONLY WEAR SKIRTS AND NEEDED TO PIN THE BAG TO MY CLOTHING.  SEXY!  THAT RED YOU SEE AROUND MY DRAINAGE SITES...YUP, INFECTION...THOSE LANDED ME IN THE HOSPITAL FOR 5 DAYS WITH HIGH FEVER AND INFECTION....

THANKS MELANOMA!



ARE YOU GETTING THE MESSAGE?  WEAR SUNSCREEN!  IT WASN'T GOING TO HAPPEN TO ME EITHER!



Flash forward to 2011...THE PREVIOUS 5 YEARS HAVE BEEN FILLED WITH MIRACLES in their own right.  Marriage to my soul mate, a child that I was told shouldn't be here and just wonderful years of clear scans NED( NO EVIDENCE OF DISEASE)  and the confirmation in knowing that I had made the right decision in going through HELL with interferon treatment and surgeries.  

Because Melanoma is so unpredictable in who it targets, what makes it come back and how it reacts to people in their own biochemical makeup, it makes it a BEAST to treat and a BEAST TO GET AHOLD OF.  After a healthy pregnancy with my little miracle of a boy whom I couldn't live without, my doctors gave me the clear to try again.  There was no scientific evidence that says hormones cause melanoma to grow.  Breast cancer yes, melanoma NO.  Some people it does, and some people it doesn't but there is no rhyme or reason.  I WAS BORN TO BE A MOTHER AND THAT INSTINCT IN ME COULD NOT BE TAMED.  2010, was a year of miscarriages...

One at 12 weeks and one early at 6 weeks.  Devastating in both of them.  I'm an all or nothing gal and never believe in giving up on my dreams.  I was going to do everything in my power to give Z a sibling. This is where I learned that I am not in charge of my ship...My God during this time, (I believe) was probably talking to me, I was just not ready to listen)  I pressed on. I grieved, but you know what I during that time refused to be a victim again.  I would try again....I LOVE BEING PREGNANT, I LOVE BEING A MOM.  It was in my design to keep trying.  Made sense, that is what I was always taught.  Never give up.

The last pregnancy we really thought was going to stick.  I had made it passed 3 mo, then 4 months, into maternity clothes, felt the baby moving and then BAM!  My world changed FOREVER AGAIN...This time, my GOD was LOUD.  I was awake, I was listening...I AM LISTENING!

Jeff and I just got home from a birthday party, It was Easter Weekend..."honey....come here!  The tone in my voice said I meant business and that I was scared.  Feel this I said.  I put his hand on my thigh about 1/2 way between my wide excision and my lympectomy....it was a mass.  I was the size of a small lime or large grape.  It appeared out of nowhere... Completely overnight.  Of course it was 6pm on Easter Weekend so there wasn't anyone to call.  The fear set in, but I knew it was a tumor.  Lots of anxiety that weekend.  Called on Monday and the rest is history....

Melanoma was confirmed again.  THE MONSTER WAS BACK.  HOW COULD IT BE?  I DID EVERYTHING RIGHT?  I NEVER MISSED A SCAN, I PROTECTED MYSELF AND NOW I'M PREGNANT 5 mo. to be exact with a child I would cut my head off for.  Conflicted and scared...no petrified is more like it was me.  What do I do?  More than ever, this is where "MOMENTS" came into my vocabulary.  As a mom, you know you will do everything in your power to protect you baby even sacrifice your own life.  YOU WOULD DO IT, I GUARANTEE IT...I WOULD.  MY FOCUS ON SAVING US BOTH BECAME RAZOR SHARP because I had Zachary, and I NEED to be there for him too.

Monday came, and I was immediately sent for biopsy.  Because I was pregnant and in protect baby mode, I wasn't willing to do anything to jeopardize the health of my baby.  I did the full biopsy with no lidocaine.  Melanoma was confirmed and surgery was scheduled. 

I had just completed a year of grief over 2 miscarriages, was 5 months pregnant with what I thought was FINALLY a healthy sibling for Z (after all, I was the one that truly in my blood wanted to raise a mini preschool and never in my head did I dream that I would only have 1 child.  This is where I feel like GOD was speaking to me, and I never saw the signs...This time, the sign was clear.  5 months pregnant, baby kicking, full maternity wear and guess what...I found a LUMP.  My heart sank, I have never actually felt a tumor, but guess what I new it was a tumor.  My cancer was back....I went to every maternal fetal specialist around and we were a go for surgery with an OB staff on site at MDA.


The next piece is when I realized GOD was screaming at me at the top of his lungs.  It was either me, or the baby.  My surgery was sched. for the following wed. which made it May 11th, that friday before I joined a study to follow healthy fetus's at Baylor.  The reward for me, was free 4D images of the little one through ultra sound.  Who wouldn't join a study to get a peak at their precious 1 more time....It's so surreal.  I was all relaxed, I mean at this point thinking the pregnancy was gravy as I had made it through so many markers and felt the baby moving.  I was 5 months for goodness sake.  

That silence in the room happened.  THAT silence that happens when you know something is wrong but they aren't telling you.  I couldn't figure out what but I knew it wasn't good.  I saw the heartbeat....the silence was deafening..."I'll be right back happened and in came the head doctor. More silence....just tell me already"  and then they did.  My baby had a lethal diagnosis.  The kidneys did  not develop which means the lungs wouldn't and would either die in the womb or be still born.  100% lethal diagnosis.  The room went black.  This was supposed to be my fun appt.  The one where I saw my little one in 4D...?  Oh my goodness, who am I?  My life flashed before me.  Now I lay on the the table with confirmed melanoma tumors in me, trying to process the fact that they are telling me my baby won't make it and quesitoning whether or not I would be around for my son.

THIS IS WHAT I MEAN, GOD WAS SCREAMING AT ME.  HE KNEW I COULDN'T TERMINATE A HEALTHY PREGNANCY.  He knew that.  There is some reason I am meant to be here and if it's to teach and motivate then that is what I am going to do.  I had the surgery for melanoma and a week later, we removed my baby and the hopes of ever becoming pregnant again.  Devastating couple of months, well a void that will be hard to fill forever...but you know what, 

"I'm Jen...and I GET KNOCKED DOWN, BUT I GET UP AGAIN AND AGAIN AND AGAIN..."

SCANS AFTER THAT SCARE CAME BACK CLEAR....I WAS NED FOR 2 MONTHS.  The end of June, a lump on my incision site appeared...headed back to MDA and this is where I find the world I live in now.  Took a picture of it, they made me an appt. on monday (of course another long agonizing weekend of worry) and by the time Monday came, I had lumps in my breasts and one, again grape sized "down there"  Lovely location.  The beast was on fire, and it was taking over fast.  I did scans and realized it was everywhere.  It was in my spine, my bones, my lungs, my abdomen, my liver.....

NOW, I'M STILL JEN...BUT SOMEHOW I WEAR THE:

STAGE 4 MELANOMA LABEL

NO.....

I'M JEN

NOT THE VICTIM

THE FIGHTER

I WILL BEAT THIS

I WILL SEE YOU TO A CURE.

I WILL!

NOBODY TELLS THIS GIRL NO...

ARE YOU WITH ME?

NO

"GAME ON!"

Surgery to remove the tumor in April...Because I was pregnant, this tumor for ethical reasons could not be used for a future "what if treatment" called TIL harvesting. 



Instead of tattoos, I wear my scars with pride!



After that melanoma was cut out in April and CLEAR SCANS FOLLOWING...that tiny purple dot is what ALERTED ME TO GO IN.  Can you imagine if I hadn't....?  God is good.  The Melanoma was taking over.  That picture was taken on friday.  I got an appt. for monday and between then and monday 2 LARGE tumors grew.  One on my right breast, and another in the lovely spot of going to the bathroom.  Scans showed it had spread EVERYWHERE!  IT IS AT THIS TIME WHEN I TRULY FELT THE FIGHT OF MY LIFE.

STAGE 4

THAT IS ME...

I'M PETRIFIED, BUT WILL BEAT THIS...I KNOW IT.






MORE SURGERY AND MORE SCARS...THE BREAST TUMOR AND THE 1 DOWN THERE (LOVELY!) WERE REMOVED...These tumors are hoping to be grown for TIL.  They were taken out and Dr. Ross was in shock.  My body was eating my cancer itself.  The tumors were Narcrotic.  My immune system from not having a fetus was ramping up and attacking the cancer on it's own.  There is a GOD.  This is before Zelboraf was FDA approved and we put my biochemotherapy treatment on hold.  HIGHS AND LOWS, UPS AND DOWNS.....BUT NEVER QUITTING THE RACE.

THAT SO FAR IS MY JOURNEY TO STARTING ZELBORAF.

Now I stare Zelboraf in it's face, hoping it's working, dealing with every side effect imagineable and not caring if it's working.  WARTS, RASH, EXHAUSTION, SUN SENSITIVITY...you name it, I've seen it...but anything for Melanoma to be gone.

I see the Dermatologist on thurs.  Let's hope they can shed some light on getting these lesions out of my throat.  

I WILL SEE THIS TO A CURE, AND HAPPY TO REPORT...I HAVE A HUSBAND THAT WILL TOO...FOR OVER 5 YEARS, HE'S NEVER LEFT MY SIDE.  NOW THAT IS
LOVE!


2012 IS THE YEAR!  THE YEAR OF MIRACLES OF ALL KINDS...
I BELIEVE ~ DO YOU?