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!
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..
Meet, "Squats ;-p"
"Raymond" is adding some flair!
Meet = "Phil"
Second visit with mom...Z got vanilla ice-creme
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!
My little T-fighters...Going in...Nervous and Exciting. Ground Breaking...Let's do This!
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!
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!
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!