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!