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!