I'm Heading to ICU Tonight To Receive My TILS and IL-2 There in the Morning!

I feel good about the decision.  With all the unknowns, it will be the safest place for me.  Wish me luck.  Going in Head First!  Ready or not, here I come!

Ok, so met with Cardiology this morning along with Dr. Papa (melanoma) and his team. They ALL are rather perplexed as to what exactly happened and what caused my hear to go into affrib. being so young, healthy, and with great echo stress test and heart prior to this...YES, I am a real life episode of HOUSE, grin!

With all that taking into account, they want me to be in the BEST possible care going into TIL and I agree. They know TIL and the IL-2 component can send me into affrib. so they don't want to take any chances and also don't want to stress me or the nurses out on the reg. floor if that happens. It is for that reason that I am being transferred to ICU tonight.

I feel like they are making a good decision and I will feel safe there going into something VERY scary not knowing how my body will react, but ready to fight for as many doses that I can handle so I can KILL this monster for good.

Mom is on her way up...Jeff will get a slight break from me and some time with the BEAN when he gets home from school and a playdate with a buddy, and I will be travelling to the ICU. Wish me luck tom. It's a BIG day.

I'm naturally a bit scared, nervous, fired up, anxious, excited, optimistic, and ready to roll and put this behind me. TIL tom and week 1 of IL-2 your day is here....BRING IT! Prayers always welcome...you all have been AMAZING!

This man speaks to my heart and is my current heart...He has the hope that I BELIEVE IS ALIVE IN ME. He DID the treatment I am about to endure...I AM GOING TO DO THIS! I AM A SURVIVOR...I WILL WALK IN NC. TIL WILL WORK FOR ME. I love this man as for right now, in this moment...he represents the journey I am currently embarking on. I have the determination...I have the attitude! I see myself NED.....I see it, I feel it, I am it! It's me....watch out Melanoma, my TILS come tomorrow and hiccup after hiccup hasn't gotten me down, it's just given me more fuel to fight this fight!.  YOU have NO idea the type of drive I have when I look at my 3/12 year old son's eyes...The promise I make to my hubby when I believe we will go on many a family vacations this year. It's on my Vision board and DAMNIT Melanoma has no room anywhere. I"m receiving my chemo NOW as we speak! I BELIEVE!

http://www2.mdanderson.org/cancerwise/2012/03/tims-triumph-with-metastatic-melanoma.html

Trying to Play Catch UP...

Bear with me as I back peddle the days in order to catch my non facebook folks up to speed.  I've copied and pasted FB posts as it paints a pretty accurate picture of the brief comings and goings of The Christie's as of late.   Here we go:

March 15th:   I'm in so much hip pain I can't even walk and on so many pain meds

I can't get enough to relieve it. This is supposed to be our easy week,
do you remember? I have NO appetite at all, but nausea with meds have been
kept at bay. I'm disappointed that my TIL # isn't high but I will never
lose hope. All my life I've followed my instinct and was right so why
would this be any different. Really tired to ths point where my head is
heavy.

Jeff is staying the night with me so he can meet with the neuro
surgeon Tom. I'm having hopefully (so I can get off some of these heavy
pain meds). spinal chord ablation. The operation takes about an hour. It's Kind of like accupuncture in the spinal chord. This
isn't s a long term fix but at least it gives me time to get off these
meds so i. Can't function.

Tough week..Z is having a blast that makes me smile!

March 16th:  

Hey There, we r still good. Haven't eaten much and have slept a lot today. Our biggest challenge of the hour seems to be figuring out how to calm my hip pain. It excruciating and I am having pretty severe reactions to all the big drugs that work. We thought the methadone was working this morning, but my blood pressure dropped really low and my heart rate went up to 170. Not fun when u feel faint and have docs rushing in your room. It was really scary. They think it was the methadone. My body isnt used to stuff like that, duh! Lol Now no more methadone for me either. We are waiting on the dr that can do the spinal chord ablation procedure but they aren't sure he can fit it in his sched. In the meantime, I'm just weak, nauseas, and have pretty much slept all day. I love u. Jeff is here, Z is playing with friends and Grammy and we are doing the best we can. I guess you can say, we've made it to the big leagues. I'm going to do this!

I miss my little guy like crazy. He misses mom too but we are juggling as best as we know how. He's been having tons of fun on play dates and BBQ with friends. Z has been having fun. It's night times that get a little hard naturally. All and all we are making it work and going to do everything in our power to stare this ugly monster down. 

Jen

I haven't even had any IL-2 yet. Please Lord, keep my body strong so I can endure the road ahead

March 17th:  Happy St. Patty's wear your green :-). 

Update:
Dr. "V" (full name too long) came by to see me last night late. He said, "I think she is a good candidate for a cordotomy. There are two considerations. First, we need to follow her blood counts to ensure the procedure is safe. Second, the procedure is done in the ct scan room. Unfortunately, this is not something i can arrange on the weekend. Will find out first thing monday when we could schedule. 

If my counts are ok and there is availability, I may be having this procedure on Monday. More info. as it comes. Just finished my chemo. Feeling pretty nauseas 

but ok. Love you all. ♥

March 18th:  Here's the scoop: when I'm MIA WITHOUT report from FB, I'm in "special territory"

Sheesh! So, I am now known on the floor as the person that does not react to "normal" medications in a text book way. Not surprised...I came out backwards remember?

So, morning was going great until I had to puke. I puked and then everything with my heart went haywire. My heartrate went up to 170. Beats per min, low blood pressure, shallow breathing and very scary.

Oxygen mask went on and in came the doctors. Remamber, I'm not even on IL-2 yet. Holy! My body has a hyper sensitive reaction to medicines. The docs even called me "not normal"my heart went into afribrilation and we couldn't get it back down. They gave me meproporfal sps?

Cardiologists were called in and now all I'm waiting on is a bed on the cardiac floor for monitoring so i can be watched closely. We need to avoid a stroke. Well, yah! I'm leaving my melanoma floor now and they will make DVD. Dec wed whether or not I will receive IL-2 here or in ICU DOR CLOSE MONITORING.

I'm exhausted. Jeff is here. We are getting is worked out. Scary, all the more.

Another reason is the lymph node that has melanoma in it outside my heart could be growing. WE KNOW I NEED TREATMENT. Thank you all for your kind words and prayers. ♥.

March 19th (Morning): 

Well...Made the call, NO procedure for me. It's too late as my blood counts are too low and I'm close to being neutropenic sps? and the risk for infection is too high. I COMPLETELY agree. That is all we would need. Today has actually been a stable day. Nick Thornburg and his mom visited which helped perk me up as he begins his last week of high dose...Nick, you are almost there. yeah..As for me, looks like TIL day may be wed. Pain is being managed, heart too, and now just 

trying to figure if I will be in ICU for IL-2 or reg. floor 10. Stay tuned...

March 19th (Evening):

Jeffrey is with me and sharing stories of the comings and goings of our household...I miss my blue eyed Little Man Terribly...This is only the 2nd time in his life I have been away from him over night...sigh (not to mention for this long). He's doing great and it's been fun to hear of his silliness and sweetness that I miss so much.

On another note, our poor little orange Tabby...CAN WE TALK ABOUT HIM? GOODNESS. Mom and dad new Sasha (our 8 lb grey cat, grin) would miss mom; however, Mr. Jenkins our little moley orange 12 lb little 1st born is having a hard time Missing mom. Part of his normal routine is he comes in and conoodles mom and 3:30am every morning without fail! I LOVE it and so does he...(who says kitties have no personalities...ha) Anyway, Mr. Jenkins has been having tremendous anxiety issues since Mom has been away and dad says he's been alerting the troops (him and grammy) in pure agony in trying to find me. Jeff got no sleep last night.

It's so bad that Poor Mr. Jenkins had to have a vet consultation today and my poor little furry critter is in need of Anti Anxiety Medication. I feel so bad, but on the other hand it truly is so sweet. Animals are so loving and just the BEST. I miss you too MR. JENKINS...Mom is just trying to get better. Hopefully be home in the next 2 weeks to snuggle you.....

Mr. Jenkins needs anti-anxiety MEDS...Are you kidding me? Feel better tonight kitty and PLEASE let Daddy get some rest...

I LOVE MY WHOLE FAMILY ♥ Today has been a good day ;-)

Ok, it's out there...had a rough night and rough morning...I need to feel to FIGHT! so I am...

It's out there, if there is anytime to HATE anything, it's time to HATE MELANOMA!  I HATE IT.  Going on no sleep high pain and trying to get to the hospital.....here it is:

Emotional, exhausted, ambivialent, in pain...hospital bed ready, now I just want more time. Wanting to run and hide. I'm in need of so much help I feel very humiliated and like a burden. No one did anything, just the situation. No one really knows what to do. Not even me. Every emotion under the sun. Safe to say, I'm a mess. Ready or not...here we go! Prob. best I feel all this. It's real...I'm hurting, I'm nervous. I want this to work so badly. Please Lord help me get through this. I'm scared. It's a lot easier to face fears with some sleep under you belt and in a state of NO pain....BREATHING...One thing at a time.

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!