Disappearing Before My Own Eyes...(-30 lbs)

Searching for my way back to "Self"

So, after 2 weeks of NOT eating....Not even ice-chips would stay down, I got upgraded to an "All liquid Diet".  My first meal included a small cup of icechips with lemonade, chamomile tea, and some cherry Jello....Wait for it...I think it is going to stay down!  Hallelujah!  

Gamma Knife and Brain Radiation Tom.  It's all kind of surreal... this time everything about treatment knocked me to the floor and I can honestly say, "I was/am scared".  I still can't believe I'm having brain radiation, but we do what we do and we just keep swimming.  I believe....I do, surreal is more than an understatement.  Thank GOD for friends and family for without you, I would be lost.  

Feel a bit lost in this BIG WORLD lately...Fighting desperately to uncover the "Jen" I know is in there.  Let's Do this!

A Family's LOVE...an Unbreakable Bond...a Forever Connection! Silly is ALWAYS a HOME RUN!

1st Step: SURGERY = COMPLETED & A SUCCESS~

THANK YOU FIRST AND FOREMOST FOR AL THE PRAYERS!

OK my friends...Sorry to keep you waitng, I was so out of it when I got back to my room, not to mention all the docs coming in to check on me ;-)  BY THAT TIME, BEING OFF ZELBORAF FOR THAT LONG CAUSED MY HIP PAIN TO BE EXCRUCIATING ONCE AGAIN...NOT FUN!

So, surgery WENT TREMENDOUSLY WELL!  I know it wasn't a curative surgery, but it is nice that it was on the surface AND not too deep.  Now we wait for the biopsy and HOPE AND PRAY IT GROWS MORE FOR TIL.  It was designed to get the tumor to biopsy to check to see if some hormone markers on it?  I trust my doctors completely.  They do feel they got all the margins and that is great.  

Surgery went so WELL that they put me back on Zelboraf last night.  Even though the side effects for this drug are yucky for me, I do feel like the darn thing helps.  AFTER ONE DOSE, I'M ALREADY FEELING SOME MORE RELIEF ON THE LEFT SIDE OF MY HIP.  Pain was excruciating again before surgery and I'm proud to say TODAY, IT'S NOT.  

I MAY EVEN START BIOCHEMOTHERAPY TODAY SO PLEASE BARE WITH ME AS I WILL BE SICK, TIRED AND THE WHOLE BIT SO I MAY BE MIA FOR A WEEK OR SO.  JEFF AND MY MOM WILL BE TAG TEAMING ME AND Z SO WILL HAVE THEIR HANDS FULL TOO.  

We are back to an awesome rhythm at home too and that makes me happy as well.  Zachary continue to use his "feeling" bracelets he got at the hospital.  His "Momo" he has with him a lot, is the monkey he named and can think of mom when she is not around.  He continues to learn and LOVE the video about your mom or dad having cancer which is told by doctors and kids.  It really hits home with him.  I love it!  What I don't love is the fact that all that wonderful stuff isn't on all the cancer floors.  

I wouldn't have known about it if it weren't for my friend Nat that is a practicing psychologist.  She called MDA social worker line and inquired about so many things to make things easier for families.  Those packets and info. need more visibility because not everyone will do that and they are so wonderful I can't stress it enough and I encourage you to inquire and check on that kind of stuff at your care center/hospital.  It doens't hurt to ask, right?  All they can do is say no.

THANKS FOR THE SUPPORT ALWAYS.  LOVE YOU!  AS FOR MY BRAIN METS, I WILL DO STERIO ACTIVE BRAIN RADIATION AFTER IT IS ALL SAID AND DONE!  I BELIEVE AND TRUST IN MY DOCTORS, MY FAITH,  AND THEIR PLAN OF ATTACK THAT IS WHAT IS MOST IMPORTANT! 

THAT IS THE UPDATE FOR NOW---LOVE YOU!

ALMOST GAME TIME~LET'S DO THIS!

Surgery:  All Prepped & Ready to Go!

Nurse just came in...They are taking me to surgery in an hour or less. IT'S GAME TIME! Let's do this~


Well, this was my status on my personal wall just minutes ago...In Typical any hospital fashion, nurse came back in and said to relax (after they had me in a frantic mood), they won't be coming until 8am.  

who knows when it will be, but it's best we put some thought and prayer on it NOW.  I'M STILL READY AND STILL WHENEVER THEY TAKE ME CAN'T WAIT TO NOT FEEL THAT TUMOR ANY MORE!  <3 TO YOU ALL!

It's just a head shaker because I WAS finally sound asleep. Now I'm wide awake, fully aware of how much pain I am in. Grrr. Just trying to take it in stride, but really as even kealed sps? As I am, IT'S MADDENING, right? Man I tell ya. BREATHE~

I've Decided...

I've decided to LIVE my life until I die and embrace the "Moments" each day has to offer...

as opposed to...

die while I'm still living which is something I see on so many people's faces in this world of stress we live in... HOPE is ALIVE in my soul is it ALIVE in yours?...

      We never know when our time is up. 4 days, 6 weeks, 9 months, 50+ years...Even I don't know that information.  It's an interesting spin on things if you really put it inside your soul and think about it.  Give it a try, you might like it.  It sure is making my everyday a bit brighter :-)

My Heart On Film...

I MAY HAVE CANCER, BUT CANCER DOESN'T HAVE ME...I WILL ALWAYS BE "JEN"

These pictures in the link below represent a "moment" in time where I may not have been feeling great but I did NOT let CANCER interfere with my ability to share beautiful and precious "MOMENTS" with my family that I will treasure forever.  Zachary had the vacation of a lifetime and what he will remember is his mom was there to share it with him...Priceless.  Thank you again dear friend Tracy Chadwick for capturing our family's heart without us knowing.  

So, my beautiful friend, Tracy Chadwick was able to meet us in Pacific City, OR and share the 4th of July, 2012 with us. It is so interesting how this universe works in a spiritual way and just has a way of somehow in hard times making everything just seem OK. Tracy and I met through Zachary and her daughter Grace.  Tracy and I shared part of one of the best times in my life...PLAYGROUP! Our playgroup consisted of 10 or more I lose track, inspiring, creative women that all became 1st time mom's within a month and a 1/2 of one another. Many of them, like Tracy, moved away from TX. It is so random and cool that we got to meet again while we had a family reunion (Jeff's side) not far from where they live. So fun. Grace and Zachary have known one another since 4 months old which means Tracy and I became friends about 4 years ago. Crazy how time flies...She is responsible for these beautiful "Moments" captured on film. Fun Times! Enjoy~


Please copy and paste this address into your browser and enjoy!  Love and health to you all...Cheers!


http://tracychadwick.viewbook.com/album/christiefamilypacificcityor#1

THE NEWS THAT I "Never Thought Would Happen to ME?"

WE ARE NOT MESSING AROUND ANYMORE AS IF WE REALLY WERE THE 1ST TIME, BUT HERE IT IS:

   I have had all day to process this information and let me tell you, it was devastating when it first came out of my doctor's mouth.  For me, hearing this was the last hurdle/last nightmare that could possibly happen.  After my Brain MRI last night, they discovered I had some metastases in my BRAIN!  Yes, you heard me correctly....IT'S SPREAD TO MY FREAKING BRAIN!"  HOW can this be?, I'm doing everything right?, I'm so dilIgent?, on top of every lump/bump/scan?  HOW, WHO WHAT, HOW?  HUH?  WHY?

AND THEN IT HAPPENED....A FLASH, A WHITE FLASH OF MY LIFE WITH ZACHARY'S ZOOMING ALONG AS IF TO TELL ME I WILL SEE IT ALL, IT JUST MAKE BE ON A MORE FAST-TRACKED FASHION.  

I know this all too well already, but I really know this....Life is precious, Life is Fragile, and none of us ever really know what is going to happen or how it is going to be, BUT I REALLY WASN'T EXPECTING THIS!

One foot in front of the other, one day at a time, minute by minute.........the lazor focus has hit a whole new meaning.  I, Jen Chrisite, whom loves MY life with her everything, now has Cancer in my brain.  Instead of hiding behind a rock, which I have never been one to do very well, I am exposing myself in full vulnerability.  The lesions are small in that they are only 2mm.  They said if this was just 2 years ago, they would be too small to even do anything about.  However, the fact of the matter is, that IT'S MELANOMA!  WE all know Melanoma is different, it's FAST, sneaky and was prob. there all along just undetectable.  

They believe it is because of Zelboraf that I prob. kept it off for this long.....I'm still REALLY UPSET, AND STILL NEED MORE SUPPORT THAN EVER.  EVEN THOUGH IT'S GOOD NEWS IN THAT THEY ARE SMALL TO THEM, it is still my brain and it is still Melanoma.  I'm smart enough to know what this really means.  Monday is still Surgery day for my breast tumor and then it hardcore treatment to STOP THE MELANOMA IN IT'S TRACKS.   The added thing needed is radiation of my brain and potentially meds for my brain and/or gamma knife etc.  It may be too small for gamma knife, I just don't know yet.  

I'M IN A REAL FIGHT FOR MY LIFE NOW, and I need the strength to walk this path.  I'm completely prepared to let GOD, as I have.  I also am completely wanting more than ever to FIGHT LIKE HELL.  We can't forget the new tumor growing rapidly on my breast, the lesions in my small bowel, and lymph nodes of abdomen.  I'M SO BEYOND FRUSTRATED!  

FIGHT THIS FIGHT WITH ME....I HAVE TO MAKE IT TO NC. TO WALK.....I HAVE TO MAKE IT ANOTHER YEAR TO SEE Z START KINDERGARTEN, GRADUATION, HIS WEDDING. AND ON AND ON AND ON...  SO MANY REASONS I'M SUPPOSED TO BE HERE. 

Bare with me, things are hectic with all the prep in dr. appt. etc. etc.  Our family feels your support, but sometimes your support comes in needing our space in that to not complicate things are disrupt Zachary's calm he has going on with his school and his routine.  We will keep you posted as best we can, but please know, it's hard on me when I feel your ansiness and anxiety through emails as we are doing everything in our power to make sure we can wake up the next day and do it all over again.  I really wish I had better news.  Prayers Please...

I LOVE YOU ALL!  IT'S BEEN A ROUGH DAY, BUT STILL IN IT TO WIN IT!

Jen

MY PERSONAL OLYMPICS---IT'S TIME TO WIPE OUT MELANOMA!

GOING FOR GOLD!

This girl right here is SO excited for the OLYMPIC GAMES...In a way, I'm going to be participating in my own kind of Olympics while I Annihilate MELANOMA!

THE COMPETITIVE SPIRIT IN ME IS BREWING AND I'M READY!  Looks like I have surgery sched. on Monday to remove the tumor in my Breast and then begin to eradicate the rest with a heavy dose of Biochemotherapy while still on BRAF if I can tolorate it.  

They will be testing that tumor to see if it has any hormone markers on it and also sending it to the lab to re-grow the cells for TIL in the event I want that as an option  in the future.  

If you remember, last time the cells were grown for TIL the tumor was narcrotic due to the fact that I was no longer pregnant and my immune system had already been attacking the melanoma.  There are NO guarantees, but hey it sure is worth the hope. 

 I feel getting this tumor out of my breast will def. decrease my anxiety level as well because I end up checking it out everyday...has it grown?, does it hurt?, etc.

It is NOT going to be easy, but as the Olympics are on think of me and say and extra prayer for the competition I'm about to embark on.  With my competitive tenacity, I'm sorry Melanoma BUT YOU DON'T STAND A CHANCE.  This MONSTER is growing FAST inside of me and it needs to be wiped out IMMEDIATELY.  I DON'T HAVE ANY OTHER CHOICE.  One hurdle at a time, Lazor focus and 150% BELIEF....I AM HOPEFUL!

LET'S DO THIS!  LET'S FOCUS.......IT'S GAME TIME!

STRUGGLING TO FIND MY WORDS...

Even if your voice is quiet, I know your fight is fierce! Don't ever quit!                                                                                                                                                                 

Inside the Body of a Cancer Patient is Screaming for HELP, when the outside says: "This girl has it all, what could possibly be so wrong or that bad?"

FACT:  

There has been a lot of heartache in the melanoma community in the past several months that it has been difficult to separate "Their Story" with "My Story"  I have been experiencing a LOT of pain recently, it has self admittedly been tough seeing my family's sadness on their face that I FELT THAT IF I WAS NASTY ENOUGH AND PUSHED THEM OUT, I WOULDN'T HAVE TO SEE THEIR HURT.  THEY (MOSTLY JEFF AND MOM) MOSTLY HUGGED ME TIGHTER...WELL, THAT DIDN'T WORK!

 I know a lot of us have big stuff going on too. To get my head out of the "emotion" and "drama" out of my head, I forced myself to make a chart:  (this was learned through therapy)

One side:

What I know to be fact!

The other side:

"what I think to be true"

When actually doing this exercise, it's important to be authentically "honest" with your thoughts. 

What I caught myself doing this past month really when I seemed to be losing myself (which u prob gathered I have been struggling from some of my posts). In doing this excercise, I feel like in finding my way back to ME. The ME I LOVE, the me that CAN. NO MATTER WHAT. 

This past month, instead of living in the "facts/what I know", I have been living in the "what I think I know about my life and the way way melanoma will be in my life". That is completely false info that I have been misleading my emotions into thinking its good or it's bad and lately with all the hardship that has hit our community I've been allowing my positive brain to fill in the pieces as to my story IS going to end in sadness when in fact 

I DON'T KNOW THAT. I DON'T.  This tumor/lump showing up out of the blue and completely off guard you would think would be a fact to support all that negativity I have been dragging my family through. 

I have been miserable almost to the  point of being mean to Jeff, my mom, my family because I wanted to just be by myself and push everyone away because seeing the hurt on my family's face when I was hurting was almost too much for ME to handle, NOT TOO MUCH FOR THEM. They, meaning Jeff and my mom never wavered. As bad and self admittedly terrible I have been, they only HUGGED AND loved on me tighter. 

This new knot (along with the  stuff going on in CO) is kind of a smack in my face to remind me that 

WE ONLY KNOW WHAT WE KNOW AND THAT IS AS FAR AS IT GOES. this is heavy and hard stuff. It's hard go admit about yourself and hard to have a scary illness that is inside your body and trying to kill it and still ALLOW people to love me. 

I'm all over the place and I want all of you to know that I'm sharing a very private part of my heart in an effort to be vulnerable and in a way, grow an extra set of ARMOR to face this BEAST AND MONSTER AND SEE

IT 

to its forever resting place. 

ONLY FACTS ALLOWED IN THIS GIRL'S VOCABULARY and I need Yi guys to call me on my BS WHEN U DON'T SEE ME DOING THAT. 

I'm not perfect as I am flawed, but whatever, it takes to not lose myself and keep LIVING and not DIE before I am dead. Does that make sense?  That is what I want you guys to to remind me go keep living. It doesn't mean I cant have a bad day, or a bad thought as some of the facts on that page I will write will be negative; however, it's really important to me, 

I LIVE

I LIVE NOW

I LIVE IN TE FACTS!

Melanoma tried, but NOT SO FAST!

IT FAILED AGAIN :)

0-melanoma

1-Jen

YES!  I'm doing it <3

Took a Break! A FAMILY RECHARGE, JUST LIFE, BUT I'M BACK!

I LOVE MY BEAN...I LOVE MY FAMILY!

So yesterday I got to spend the day with my little man...ALL DAY, you know like our good 'ole days. :)

GO gO Go, GO HERE...go there with no stopping in between.

Meet a friend, Monkey Joes...lunch, do the laundry together, fold the laundry as a team! Be silly with the laundry, laundry, laundry, laundry...BUT GET IT DONE laundry.  I DID IT!  We did it!

COMPLETED A TASK!

snuggles, tickles, giggles

Home to play, back out for an errand...

and...

0 interruptions! (none for "mommy needs to lay down, or mommy this, mommy that"

I even tucked him in!  Tired SURE, hurting, um YES but a better day than I've had in a while in that respect.

Just mommy and Z.
Simple
Beautiful
PERFECT <3

He looked at me as he asked me to climb up in his bed for:

"ONE last pretend story and snuggle and said....

MOMMY I'VE MISSED YOU!"

*tear, but a good one..."I've missed you too little one, but i said i'm always with you, always a part of you, always in my heart <3

NO MATTER WHAT~

lI've missed you and missed this...and our little family of it all working together...u, me and DADDY more than u know.

Always in my heart <3.

ALWAYS <3

When I have a bad day, which we all do, I WANT TO REMEMBER THIS DAY!

Before I went to bed and essentially fell asleep sitting up (which is why I am just writing this now...in the quiet and te still of the night/early early morning...

I went in his room and just stared at his peaceful sleeping self...again like the good 'ole days, and dreamed and prayed for decades  upon decades that we will have to do this over and over and over AGAIN~

I love you WINKERBEAN!  I love more than anything and so grateful for the miracle you are and for welcoming to the club of:

MOTHERHOOD!

Today, MOTHERHOOD was bLiSs...

*(As a side note:  For all my friends and family that think o might have fallen off this earth...

I HAVEN'T...just really focussing on my family right now & making sure we are all being taken Care of and it feels nice. My mom has left to refuel her engine and well that is that...

BY THE END OF THE DAY, I'm exhausted!  The good kind though!  The kind filled with I DID IT's and I can do it's and purposeful exhaustion of life !

Love to you all and especially to my Jeffrey, my Zachie and myself...our family....we have been through a lot and it seems never ending but I never in a million years could imagine doing this and SURVIVING THIS WITH ANYONE BUT YOU...

Thank you...MY JEFFREY, my ROCK!  Knowing our love is the FOREVER KIND pretty much

KICKS ASS!

'night again...WE ARE OK, just down here rocking and rolling kicking MELANOMA IN THE ASS AND OUT THE DOOR AS WELL!

No Vacancy...PERIOD!

Something that always make me smile :-)

Two phrases that Z still says that I have no desire to correct him on:

1. Very Emphatically: "NO I AM'NT MOM!" lol

2. "Yesternight when we had dinner..."  etc.

and then I think to myself...why not no I am'nt or yesternight! It sure does make a whole lot of sense. ♥

Heavy Thoughts Tonight...

Having an argument in my head regarding the "new normal" kind of Gig...I WON'T ACCEPT IT, BUT DON'T KNOW HOW TO RELEASE MYSELF FROM IT. Kind of sad tonight ;-( Wish I was able to feel more helpful and not such a burden. I'm not sure this is what anyone dreamt it would be like...So stiffled within my own head. Silent tears on my pillow.  I wish I had an impact like I used to be able to. I wish I could erase it all and make it obsolete.  Mobility is so much of who I am and even though I know my body is only the shell of me and not the soul of who I am, somedays, like today I WANT MY SHELL BACK.

Dear Hip Pain...GO AWAY!

Trying to be patient, but hip pain seems to be getting worse rather than better...Mobility is better with the cane and the walker, but the pain is still there. Besides being tired, I FEEL healthy!

Please Lord hear me: "Please let this be a temporary thing and please let my brain believe it is so it doesn't go wondering. I'm an active 36 year old mom who loves to run, swim and do anything active. I need/want use of my hip../legs."

AMEN---Please comfort and take care of all the warriors who are fighting harder than me!

My "NEW Leg & Wheels" Arrived on Friday May 11th!

Friday the 11th of May, I went to my 1st Physical Therapy Appt.

btw: I got a new leg (A CANE...really helpful) and wheels (MY WALKER...BEING DELIVERED TO MY HOUSE TOM) today Physical Therapy. Going to go 1x a week for 4 weeks to start to start strengthening my core so I stay strong everywhere else besides the limited weak/hip area where we have to just wait and see if the metastasis shrinks.

If Hip aint HAPPY, Ain't nobody HAPPY...HIP IS 

HAPPY...OVER THE WHOLE VANITY THING, I NEED IT!    

CANE'S NAME IS DECIDED: 

 "PEGGY" for the whole Peg-leg thing etc.  Plus, I figure if I get bored, Peggy is always with me to chat with while I'm at scans by myself.  grin...

My walker has been more challenging to find a name.  Here are names in the running...lol (in no particular order):

1.  Royce

2.  Jet

3.  Boswell


What are your thought?

I feel emotionally complicated:-/

You know, most days I do ok and I'm able to focus my brain on one day at a time. Every now and then, I get ahead of myself. It's exhausting trying to keep up with the desires of my brain when my body can't. I just hate it, let's be real. I know all that stuff be patient, my body has been thru a lot but the honest truth is something has been going on with me full speed ahead for a year and a half and I'm tired. I'm not giving up, but at some point as much as I try to believe this is temporary, it sure feels like it's permanent. That's when I get down and the cycle begins. I was sad today. I'll get it together. I HATE CANCER! I HATE THE CONFUSION IT BRINGS TO A FAMILY...at this point I know if it doesn't kill you, it sure does make you stronger. I'm STRONG ALREADY! I'm READY FOR A BREAK.

Best News I could have received at this point...

...but not out of the woods just yet.  One day at a time and moving in the right direction feels great!

Here's the scoop! They are calling me a TIL RESPONDER. Not out of the woods, but moving in the right direction!

I'd say...A GREAT DAY ♥~

My brain: ALL CLEAR! Whoo hoo (spare the jokes please...ha ha, I know, I know)

Liver: they think all that is left are cysts but watching them. :-)

Lungs, lymph node outside my heart, abdomen, small bowel and everywhere else have either SHRUNK or remain stable. :-)

A GREAT REPORT to have so early on....

Want me to put my chordotomy on hold for now. go to physical therapy and get a cane/walker to help walk on my hip. Should only be putting about 10% of weight on that hip.

Afraid if they take away the pain, I could get a false sense of what my hip is capable of and fracture it. Hopeful it will shrink too based on current results.

Bones need more time to heal so we'll wait and see.
NO more treatments at this time, my body needs time to recover from such a hard treatment. Plus it's working, so wait and see is a great option.

NO procedure on Monday. Yeah! I have a MRI of spine on tues and then scan again in June.

God Bless, God is good. My biggest need for prayer is my hip pain.

Let's do this! Melanoma WILL NOT DEFINE my soul. I WILL see a cure!

GOOD DAY!

Finally Home...

In great and amazing news, I'm home & health-wise, I feel fantastic and so does everyone in the house..Yeah! BONUS...super big win :) REALLY good to finally be home!

In some discouraging news...my hip pain is back to being debilitating so I'm essentially immobile and lack independence to do anything again. :-(

Appt. Tom at Brain & Spine for the Spinal Chord Ablation Procedure.

I don't want another procedure, but also can't function with this pain.

Praying for a solution and patience as I wait to see if my treatment is effective.

Nerve racking, but hopeful ♥

Stay Tuned...That's all for now :-)

Discharged tom., but CAN'T go HOME?

"We...take the good...we take the bad...we take it all...and there we have..."

---whistling, skipping, and living our lives one day at a time!  Here we go!

UPDATE:  Woke up in much less pain! Yeah!...Win~ 


Need to test the hip to see if I can sustain pain management orally in the event I go home.  Most likely will get discharged tomorrow Wed. April 25th, 2012...YEAH!


but wait....


THE HICCUP:  Got a call from Daddy this a.m.  Z was running a fever.  Barking cough that started in middle of the night.  Daddy calls Pediatrician and gets a 10am appt.  This means no school for Z, Daddy still working from home, Grammy coming up to me....ahhh!


VERDICT:  Z has Croup.  I'm ready to be released, but due to my compromise immune system meaning it's still a baby having been depleted, I can't go home or be in contact with my Bean for 3-4 days...


TORTURE-but we obv. don't have a choice...


(house needs to be disinfected...phew, at least we have that one covered...Thanks Gram Gram Grammy!  ;-p


Tomorrow upon discharge, I can't go home....I need to check into a hotel.  I can't see or be around Z for those 3 days because croup is a virus.  

Daddy gets an award for sustaining a paycheck; while, being MR. MOM...I so proud of the man I married.  It's when we are down that are love is tested.  OUR love is beyond the FUZZY stuff.  I definitely MARRIED UP....WE Really can do anything.  Love you sweetheart <3.

A normal person with a normal immune system can be around a person when the fever subsides.  For me, we can't risk me getting pneumonia.  Can treat Z with Steroids, DEF. CANNOT treat me with steroids to suppress an already suppressed immune system and then allow MELANOMA to go NUTS!


NOTE:  Jeff and I will be handing out flyers for crisis management.  Our seminars will begin:  TBA...Are you kidding me?  Once again, it is what it is and all we can do is ROLE and hope for the BEST...


"Obladee Obladah Life Goes On, OH...la la la la la la la"


On any other occassion, I would welcome a Dr. Mandated Stay at a hotel break...but all I really want is to kiss my baby....

Still happy to get discharged and thankful for everyday for a step in the right direction!

Soon, soon....very soon  PATIENCE is my lesson once again!  We've learned to expect Roller Coasters...We are better and stronger for what we have been through, but still pray for a break!

At least the more we go through, the next time a difficult situation arises, anxiety goes down and you realize how resilient we really are if we just believe.  

Where there is RAIN today, there is SUNSHINE tomorrow....I've proved that over and over and over again.

As I write this, I want to ask each of you to pray for my friend...


 Special Prayer Request for Shawnda Eddins who was my neighbor here at MDA.  She's having such a hard time keeping her red blood cells and platelets.  Every transfusion, nothing sticks due to complications.  I pray she can have a break and relief from this pain.  

I look at her and go:  "how does she do it?"  she looks at me and my story and says the same thing!  Right now, Shawnda needs some extra prayers.  Sending them her way and hopefully you will too.

Prayers for both of us:  AMEN!


Photo journalling of what RECOVERY LOOKS like:
Not an easy deal:


PUFFY FACE---THIS ISN'T EVEN MY FACE AT IT'S WORST...AT IT'S WORST I WAS COMATOSE...

NO EYELIDS, SWOLLEN EYES AND FLAKEY SKIN

LIKE THIS ALL OVER MY BODY:  THANK YOU EUCERINE!

THE PICTURE PRETTY MUCH TELLS IT ALL...

OK!  I KILLED NYDIA (MY APN) FOR TAKING THIS PHOTO


HAPPY BIRTHDAY JEN


THE DAY IL-2 WAS CALLED:  MY BIRTHDAY AND FROM HERE ON OUT WHAT I CALL MY CANCER FREE REBIRTH...PRAYING THIS IS TRUE.  HOW POETIC WOULD THAT BE? 


OK, FUNNY HAT...THANKS FOR THE LAUGHTER NYDIA!


THIS IS WHAT JEN LOOKS LIKE BALD AND WITH 30 LBS OF WATER GAINED IN 2 DAYS...I WASN'T GOING TO POST THIS BECAUSE IT'S BEYOND EMBARRASSING, BUT THEN I THOUGHT ABOUT IT AND YOU KNOW WHAT?  IT'S REAL..


YIKES!


THANK YOU LASIKS SPS?  IN ONE DAY, I PEED ALMOST 9 LITTERS...  


:-O


A MULTIPLE DAY EVENT AND MY HEAD AND BODY BEATLE JUICED BACK DOWN TO A NORMAL SIZE...


ON TREATMENT MY BLOOD PRESSURE WENT AS LOW AS 80/? TO AS HIGH AS 180/109...I DON'T REC. EITHER!

LET'S JUST SAY, I'VE FELT BETTER!

THAT ON MY HEAD IS A PILLOW CASE WITH AN ICE-PACK...
I HAD WARM BLANKETS AND A ICE-PACKS ON MY HIP AND HEAD!
RELIEF!

WELL, AS MUCH RELIEF AS ONE CAN GET...

NOW WE PRAY IT WORKS! AND WE PRAY HARD AND THIS POSITIVELY AND REMEMBER THAT THERE IS ALWAYS HOPE AROUND THE CORNER!

MIA---Tough Weekend!

Hi everyone ♥...I've missed you. MIA-I know, here's the happenings since my birthday:

1. Labored breathing, lungs filled with fluid...called IL-2 quits at dose #7 ( all I can do at this point is pray my body responds to the total of 17 doses of IL-2 with my T-cells. (1.8 billion, lower than we wanted which fueled my fight to push for more IL-2.

2. Like everyone, I don't care how it happens, I just want to hear NED! Goodbye Melanoma you nasty Monster!

3. Blood pressure sky-rocketed to a more than scary level...   180/109 (Oh my gosh!  My bottom # was nearly my normal top #)  Now, I've gone to super low BP to super HIGH BP---Both, feel LOUSY.

4. Then the excruciating headaches began which became debilitating. Looking at my phone hurt, the light in my room...a pain I've never experienced so naturally the psychological mind gets nervous and thinks "Oh no, BRAIN METS...and then fighting internally with myself not to think that way.

5. Fever hits, now think my PICC LINE may have an infection. We take it out and send it for culture...Waiting!

6. In the meantime, get a Peripheral IV because we "think" I'm going home soon like Sunday and BAM!  NOPE.

MY HIP PAIN RETURNS...the bad kind, the kind that made me so happy it was gone and made me think something was WORKING...

DAMN YOU MELANOMA AND YOUR MIND GAMES. I'M NOT SURE THE LESSON INTENDED FOR ME TO LEARN THIS TIME, BUT I'M OPEN...

Please cut this girl and all those fighting some slack. We are strong, but at some point:

WE HAVE HAD ENOUGH ALREADY! Ready for my REAL FAMILY VACATION...

It's TIME: Ready for More...Here we go:

      IL-2 week Part Deux

     Had the Best day of my entire time off today...I had the most energy, and just one of those days where everything worked and we were all in sync.  No plans, but everything we decided to do worked.  Lots of inside fun family project time!  LOVED IT!  


      Taught Z how to play UNO for the 1st time. All of us played and he schooled us...lol  He loved it.  VERY competitive...hmm, not sure where he gets that, eh hem...APPLE!  lol  Lots of laughter, no frustration, a lot of contentment.  Just a day you would want to repeat over and over and over again!


      NOW, I'm ready!  I ready to get my tests done.  I'm ready for my doctor Appt!  I'm ready to get checked in tom. night!  I'm ready for the final LONG week of IL-2 and EAGER to get it behind me.  


     Sleep well little T-fighters...tues. and the rest of the week get ready to EAT and EAT and EAT as much as you want so you can reproduce and ATTACK!  


See you Later Melanoma!  Good by pain...Adios PILLS!  It's my time...

My 3 week TIL Adventure in Photo-Resort MD Anderson...

Tumor Infiltrating Lymphocytes=TIL (Round 1)

The Photos Now Match the Words Already Written...

Next year, hopefully our family will be Resorting in another country, a tropical island, but definitely a different type of an All-Inclusive...I've been a bit down for the count, almost a narcoleptic kind of exhaustion but that was all expected in theory.  That type of exhaustion is much more difficult to handle real time which has been my explanation for my absence in blogging.

The beginning...An effort to document my journey...See that hair loss?  That is ALL Zelboraf...Hardly MILD THINNING!

Can't tell, but upon check in I was in excruciating pain from the metastasis in my hip!

I think I'm happier bald!

Nice and fuzzy...lovely!

Pain is definitely an issue!  Mamma is NOT a happy camper...

After having this onion head for so long, I was ready to go BALD!

"I may have melanoma, but I'm still cute"  (but always a bit dorky---tee hee

I need pain meds...NOTHING is working!

Walking the floor...

At this point in the journey, I was walking with a severe limp out of pain.  Keep in mind, I'm medicated beyond belief!

The GI Jane Look!

First stop, the Mohawk...Highly rec. everyone shaving their head and cutting a Mohawk once in their lifetime.  Kind of liberating!

Lookin' good 'lil Jenny!

I just love my audience looking on...

A closer shave...Getting all slick!

Didn't hurt, just tingly...It's only a cleanser, but felt burrr cold!

Little Man came for a visit.  Watched the tail end of the cut.  This is the salon and MDA.  He looks me in the eyes and says, "Mommy, how can you be so brave?"  I heart this little heart that I call my son...

He's showing me his "Build a Bear Chick" he built with Grammy and I'm reading it's birth certificate.  He made the chick a Doctor...

Checking out the New Do!

Back Upstairs...

My visit with Little Man...We weren't sure if visiting would be a good thing, or too much.  For his little mind, it's what he needed.  He def. needed to see where mom was.  His visits REALLy helped him.  they helped me too!

Learning about all of mommy's machines...

I LOVE you Zachary Dean, you are my Fight!

Keeping it light is REALLY helpful!  Isn't this funny?  So many times I wish I had the guts to do this...lol, someday...watchout!

Uh, my body didn't like the Fentnyl PCA...Nothing would help my excruciating hip pain.  Morphine=NO, Dilaudin=NO, Methadone=NO, Fentanyl=NO and well, my body did not like it.  I'm on oxygen because of an allergic reaction and due to all the pain medicine in my body in which we were trying to tame my pain, my heart went into Defibrillation.  NOT fun...pretty scary actually!

Did I mention...NOT fun?  Just documenting the reality of the situation.

My IV pole...Hi Raymond!

I called the vital machine, "Mr. Rushmore"

Thanks Hilde...yes, if Pigs can fly anything IS possible.  This pig is Francesca..

Snack tray="Slide"

Meet, "Squats ;-p"

"Raymond" is adding some flair!

Meet = "Phil"

Second visit with mom...Z got vanilla ice-creme

yUm!

:-)

"mOmEnTs"

Checking mom out!  Love you little one...

Children have a way of making you feel "normal" no matter what.  Unconditional LOVE...

I am LOVED...Amazing friends that have helped so much.  Thank you Kel for these beautiful scarves...I'm learning to rock the head scarves daily!

Happy St. Patty's Day...Enjoying some fresh air...NOTE:  I'm in a wheel chair as I couldn't walk at this point...so much pain!

Had to move floors...Now I'm on the Cardiac Floor...Floor 12 as my heart will not cooperate due to Defibrillation.

Hooked up to so much more!

What are you going to do?   ;-p

I think I'm electric!  Maybe a robot at this point!

Got to roll with it!

Being Silly...dance it out!

Oh, "Raymond", we have already been through so much together!

I'm Neutropenic...My immune system is at 0.  Gloves and mask at ALL times!

My traumatic move to ICU...I'm going, I'm not, I'm going, I'm NOT!  Frustrating and not handled well AT ALL!

WTF, they had me all packed up, unplugged and boxed up.  I was at the elevator and ICU got an emergency.  My room was given away...Pushed back in my room like this...terrible!

In the ICU...the Lovely gowns...getting ready for my TILS...

It's an Exciting Day!  Finally, TIL day...Finally a day that I feel like we can start to eat my melanoma!

"Cancer Royalty"

My little T-fighters...Going in...Nervous and Exciting.  Ground Breaking...Let's do This!

Yeah!

There they are...MY bag of Liquid Gold...

NOT sure what dose, but this is me after my IL-2 infusion.  Prob. an hour or so after.  Convulsions like I was having a seizure, chills beyond belief, FREEZING...All those blankets are in an effort to get me warm.  

Signs of LIFE...hi!

No description needed.  This stuff is BRUTAL!

Boo!

Starting to come out of the episode!

We named that machine "Leroy"

Phenegren, Benadryl, and my 1st Blood Transfusion.  For some reason, having a blood transfusion was difficult for me to wrap my head around.  I had a lot of anxiety over this...What if my body didn't like the blood etc?  It all was ok.

Starting to get swollen!

Skin is bulging, is so red like a very bad sunburn, feels like leather.  I'm so uncomfortable!

So, So Uncomfortable!

Miserable!

Trying to be happy?

Almost at my breaking point!  Faker smile...

I'm doing it everyone!  I love you all and thank you so much for you letters, emails, cards, and support!

In a nutshell...this is how I really feel, unfortunately...

My face is so swollen, I can't open my eyes...NOT a party :-(

I gained 25-30 lbs in 2 days and lost it all before I went home.  My body went to a war zone.  DIE MELANOMA!

These pix don't do it complete justice, but my skin was so red, purple, bumpy, and leathery...I hurt so badly.  Dr. Papa came in after 10 rounds of IL-2 and said...Ok my dear, your skin is going to call it. The White Flag was waved!  I did it!  I'm now in recovery mode.  Thank you Jesus...Praise GOD!  I DID IT!  WOW  THIS was a doozy!

And BACK AGAIN APRIL 16TH 2012 TO DO IT ALL OVER AGAIN.  WELL, AT LEAST THE IL-2 PART...Most difficult recovery of my life.  So exhausting!