Countdown to the BIG DAY... TIL = NED Lets' do this!

Call at 10am Sunday March 11, 2012  to get a time for Admission.  They are then supposed to call us back and let us know when a bed will be available and for us to come on in...Nothing like not knowing until the last minute, grin!  Here is what has gone down these last few days...

What I wrote Thurs. Night:  I've been up for an hour now since 2am. EXCRUCIATING hip pain. Nothing was cutting it. I just needed to go to the bathroom and there I find myself in a cradle position, unable to even rock, silent tears down my face and my husband so confused as to what I'm doing he's thinking I'm being funny and quickly learned I wasn't.   Please LORD, let me make it through these next two days. If I can't get ahold of this pain, I may need to check into the hospital early. 

SO MUCH HIP PAIN I was back to being lifted/dragged to the restroom.  Now I'm screaming. So much pain. All I had was hydrocodone so I took two. Kicking in but not cutting the pain. Terrible headache. I write this unable to sleep because the hip pain feels like knives. Please help me have the strength to get through this Friday and Sat without being admitted early. It hits hard when the pain is so high. I have melanoma, stage 4 and it's trying to kill me. Please pray for relief. This monster works. Please pray that the week I'm in the hospital this BEAST DOESNT TEAR ME APART IN JUST ANOTHER SHORT WEEK.

 I've declined in such a short time off my medicine it's pretty frightening. Hubby was confused what I needed as it was the middle of the night and he was half asleep. I know he believed me but he didn't know how to support my agony at that moment. Pain starting to be masked. Thanks for listening. Thank you! How, just how does this monster think it can get me. IT WON'T. IT WON'T. Prayers to anyone and everyone. Effected by its unpredictability. ♥

Friday Night's journey:  Just to shake things up a bit, I spent the a couple of hours in the ER last night in the worst pain I have ever in my life experienced.  I was convulsing, lips were quivering, nauseas, and unable to find a spot of comfort.  Trying to rock, couldn't sit, couldn't stand.  Jeff had to drag me to get to the restroom I could not even crawl.  Excruciating is an understatement!  Got my central line in this position and Jeff walked over to melanoma and skin to get a Rx or Oxycodone and potentially some morphine.  Nothing worked.  

At about 7pm, we made the call to head to the ER after talking to Dr. Kim.  Dr. Kim told us to take some ADVIL.  Absolutely unbelievable. Advil? After a full day of suffering and the highest dose of heavy narcotics, my pain is managed by advil and I'm being sent home. This is awesome, but really...who would have thought Advil. Lol. I kind of feel lame, but still don't regret coming. Pray I can get a good nights rest and the pain relief holds steady through Sunday. Flabber gasted sps. If u know me, u know my pain threshold is high. Advil? I guess the tumor in my hip pushes on a nerve and when I take the Advil is works on inflammation. Duh...driving home and night all. What a circus!

As for the advil, if you actually think about it, it does make sense but when morphine isn't cutting your pain you kind of don't think advil will. Also, on Zelboraf Advil was a no no for me so I was thinking I couldn't take it. Because not on the Zelboraf I can. I'm still in pain, but at least I can sit. The pain I experienced I was in complete full body shivers, shaking, couldn't walk, couldn't get comfortable and couldn't get relief. At least this way, I can make it to Sunday at home...Slept well last night. 

I have NO words for what Melanoma BONE pain feels like....it is EXCRUCIATING. no words....hugs everyone! Morphine and oxycodone block receptors in the brain and do nothing for the inflammation from bones on nerves. They said advil works wonders on bone cancer pain....who knew?  I didn't know the brain doesn't recognize inflammation pain. I do now, I'm ready for my doctorate. It's all so very fascinating!

Melanoma isn't worth it!  PERIOD.

My two new "tube friends" that will be with me kicking Cancer's Ass for the next however how long. Picture is BELOW:  The port coming out of the arm is a safer location than the one I had on my chest in 2006 for high dose interferon. What is amazing to me s how they threaded it through my veins all the way into the spot right near my heart in my chest. 

Jeff and Grammy will attend classes when I get admitted to learn how to change my dressing. Can't get the twins wet so I cover it in Saran Wrap and a plastic ziplock with tap. It works. Fun stuff. These guys arrived yesterday while in excruciating pain. Still in pain but at least my body isn't convulsing from it and I can at least relax when not moving. Thank u Advil and alternating hydrocodone. On a six hour schedule with each so taking something every 3 hours.   Glad we figured out the solution for that one. Never in my life have I felt pain like that. WOW~  NOT RECOMMENDED...

What shall we name these two little friends of mine?  Hmm...?

My buddy Nick reminded me:  You are just going to love your new friends. Actually not so bad after a few days.

The pole is more annoying. I am so happy that I got divorced from my IV pole! It was very clingy. Lol.  

My response:

Nick, I forgot about the affair I was going to have with the IV pole. You are so funny. Good to have its clingy &$* off your back. I may be dancing with mine in the hallways upon your return. "I'll do it...(pause)...my...way...". Spirit fingers! Lol

When Jeff got home, he drove me to get a mani/pedicure...this Diva needs to look damn good for her big day. Lol I can't drive, but I figure I could sit in a chair and feel pretty. Ready to KICK CANCER IN THE ASS Tom. Using my pain, my anger, my drive to focus on years of clear scans and no medication. Being beautified for the years of NED COMING MY WAY! 

Really is the small things...these will be my daily reminders of sunshine as I wake up every morning and see them shining back at me ;-p. Yeah for soft feet...an added bonus that happens when stopping Zelboraf. The callouses begin to leave as well.

The BEAST and the DIVA...(The BEAST really has NO IDEA) GAME ON!

Off Zelboraf and Melanoma is trying to reclaim my body...NOT SO FAST!  Pray I can make it to hospital admit day.  This is definitely not going to be easy nor fun, but definitely worth it if it gives me more of a long term solution...HOPE IS ALL WE HAVE!  Here's the recap from last night and the days ahead:

 HATE MELANOMA!...it's speed is ridiculous and in a blink of a second it tries to rip me to shreds. I've been up for an hour now since 2am. EXCRUCIATING hip pain. Nothing was cutting it. I just needed to go to the bathroom and there I find myself in a cradle position, unable to even rock, silent tears down my face. Please LORD, let me make it through these next two days. If I can't get ahold of this pain, I may need to check into the hospital early. SO MUCH HIP PAIN I was back to being lifted to the bathroom. 

Nothing worse that melanoma pain. NOTHING, at least in my life. Experience thus far :-(

Now I'm screaming. So much pain. All I had was hydrocodone so I took two. Kicking in but not cutting the pain. Terrible headache. I write this unable to sleep because the hip pain feels like knives. Please help me have the strength to get through this Friday and Sat without being admitted early. It hits hard when the pain is so high. I have melanoma, stage 4 and it's trying to kill me. Please pray for relief. 

Pray this trial works. Please pray that the week I'm in the hospital this BEAST DOESNT TEAR ME APART IN JUST ANOTHER SHORT WEEK. I've declined in such a short time off my medicine it's pretty frightening.  Pain starting to be masked. Thanks for listening. Thank you! How, just how does this monster think it can get me. IT WON'T. IT WON'T. Prayers to anyone and everyone. Effected by its unpredictability. ♥

 No words about last night other than, I'm going to need INTENSE prayers that I can endure the next couple of days and the 1st week of chemo in the hospital that will just be depleting my system and doing nothing for my melanoma. This fight started a long time ago, but it's really ON NOW! 

My road ahead is bumpy and jagged, but I need this path to hopefully one day be able to feel like i'm out. Melanoma...I HATE YOU! Leave me alone and YOU HAVE NO IDEA WHAT MY FIRE REALLY LOOKS LIKE. I have to fight, I'm ready!

1 day off Zelboraf, 1 week before TIL, and so much change: MELANOMA YOU ARE NOT THE BOSS!

just venting to make sense of all that is about to go down....

OK...So based on what happened to me last time when I went off Zelboraf, Dr. Kim asked for a waiver for me to stop Zelboraf 1 week before TIL rather than the 28 day protocol. These are the little things as to why I LOVE my doctor. He just did it and knew and I feel like I have true advocates on my side.

Back to the Zelboraf Confusion thing for me and the MELANOMA IS SO FRUSTRATING THING. It's truly a mind game. So, last time I got scanned, I was disappointed because essentially I was living life with little melanoma pain but just side effect Zelboraf pain. In my head I was SURE the Zelboraf was working more than the scans showed. I was so confused as to why it would show stable and not regression and even growth in some places when I was active and back in my life. THIS IS ANOTHER REAL REASON TO GET SCANNED AND NOT NEC. GO ON HOW YOU FEEL.

Now that I'm off Zelboraf, it hits HARD that melanoma is REALLY in there and I NEED to do something about it. Yesterday was my first official day off Zelboraf and ALREADY, I'm having difficulty walking up my stairs etc. etc. Now I feel that I match my scans, but I'm confused as to what Zelboraf actually was doing and how fast the pain could come back to the point where now, I limp like I was doing before. After only 1 day off! Can you believe the speed of this monster? Can you imagine if I didn't have Zelboraf? Zelboraf isn't a pain medication. It's mind boggling to me.

My hip melanoma and spine melanoma pain and my mobility are all showing signs of being debilitating again after only 1 day off Zelboraf.....It hit me today EVEN harder that WE NEED A CURE AND WE NEED ONE FAST. They are so close on many levels to having even more options but that is just it. So close, NOT A CURE. This walk in NC and I may even do the Houston one keeps my eye on the prize and motivates me to look ahead and get through all this gruesome treatments ahead of me.

I def. would not have made it the 28 days off Zelboraf and side effects and ALL, I do realize at least I am lucky to have had Zelboraf at all. I had these big plans since I was off Zelboraf this week that I was going to go exercise as I wouldn't have joint pain, as much sun sensitivity, and def. not as exhausted...BAM! woke up this morning and realized even though I know this....but REALIZED, my MELANOMA is trying to kill me. I HAVE TO FIGHT. I DON'T HAVE ANY OPTIONS. I may lose my independence by the end of the week and I was planning on being FREE from a drug with so many side effects. NOT SO FAST, MELANOMA SAYS.....In one day, It's trying to paralyze me. CAn you believe that? I just can't.

Maybe that is the whole Miracle in the this Miracle drug as it has given me quality of life time after I sorted through and was able to manage all those awful side effects but I did. You do walk around wondering though..... You wonder a lot no matter how positive of a person you are. How long will this drug work for me? This is the reason I need to keep my razor sharp focus. This is the reason I get extremely overwhelmed on a daily basis with too many moving parts as I feel EVERYTHING that happens on a cellular level inside my body that no body does. To everyone else, aside from now the obvious thinning of my hair, I still look the same. I'm the only one that feels the intimate changes and it is this reason that keeping things simple with very few moving parts and change is so crucial for me to get well.

OK TIL TRIAL....I HAVE TO MEET YOU HEAD ON. I HAVE AN EKG, MORE BLOOD WORK, AND A CT SCAN THIS THURS. I NEED TO GET THROUGH TO GET ALL THOSE BOXES CHECKED OFF. I NEED TO MAKE IT TO SUNDAY, AND WE NEED MY LITTLE T-CELLS TO BE VIABLE SO I CAN BEGIN TREATMENT.

Please pray for me I get in this trial and something at the last min. doesn't disqualify me. I am having anxiety now as I'm so close to being there. Please pray that if I go through all of this, IT WORKS FOR ME! IT'S A BIG WEEK OF ANTICIPATION and my pain is back so with the pain comes some worry. Off to meditate and focus some. Feeling these feelings people is where I get my fight. Sharing because I know you care. I hope you all have a more than wonderful week.

Things in this world of MELANOMA...Nothing is constant and everything is rapidly changing. Just trying to stay focussed. Sunday here I come....NED, YES I WILL SEE! WALK IN NORTH CAROLINA I WILL BE THERE AND giving my everything to see this to a CURE! Go away you uninvited BEAST! GO AWAY!