I got a whoppin' 5 bags of the stuff...Yeah, folks....Five; and Man, if you don't think that I haven't been beating the living shit out of myself mentally for it you would be sorely mistaken.
I don't think I spent a collective 10 minutes this morning not crying and wallowing in that annoying self pitying state that makes most people wanna nail you upside the head with a 2X4.
I just can't believe it!
I was all set to kick some ASS. Show stinkin, shitty ol' mel who's the boss here, anyway!! I had HUGE hopes of this being a total knockout. Total Annihilation.
Buuuut. I have been known to let my imagination run wild....To reach for the stars. But in this case, I was sent back careening at breakneck pace, slamming back down to Earth, beautiful Planet that it is.Five bags....I just couldn't believe my fucking eyes, ears, you name it. People on the support forum that I read, MPIP (Melanoma Patient's INformation Page) have done many more. One or two haven't....but alot of them have done quite a bit more.
In my case, my body just didn't want me to have any more.
My heart rate skyrocketed causing the team to order up a heart monitor with electrodes to be slapped on five different spots on my upper and lower chest. Because it stayed up, I had to skip my next sceduled dose. It eventually went down after that first time it hiked up. Not to my normal range, which is around 80-90, but still under 120, which is the max it can hit to still be given the IL-2 dose. As I mentioned, it went down to around 105-115, so I got the next scheduled dose for 8 hours later. After that dose, it soared up too high once again, and it just wouldn't come back down into the realistic realm of IL-2 dosing possibility.
10:00: I had to skip my 6th bag. Heart rate too high. The slightest movement caused the handheld monitor to read numbers in the 140's and 150's along with the words PATIENT ALARM PATIENT ALARM PATIENT ALARM!!
6:00: Second shot at getting that 6th bag. Heart rate was STILL too high, and I had gained far too much water weight gain for the doc to feel comfortable about giving it to me. In addition to that, they could hear fluid accumulation in the bases of my lungs. Not good.
I woke up this morning to the news that they were halting this round of IL-2. It was going to be stopped. I immediately burst into tears. Reasons and excuses were given, much like the ones I had listed above. I was told I would be staying here in the hospital until either Friday morning or maybe afternoon, so they could administer some IV Lasix to make me lose some of this water that I have taken on.
My oncologist just didn't feel safe or comfortable with going any further with the doses right now....I will be going home. No more IL-2 for this round.
I am still on for Monday May 21 for my next round; the second round in this first cycle. Hoping like hell that now that one will have to be my time of reckoning.
It's so hard, because I know I hung such high hopes on this treatment...To be told I (or to be totally and completely fair, my body) could only tolerate 5 bags was a blow. A sort of mild one, at least in respect to the blows I have been dealt over these last few weeks, but still a blow.
Also to be fair, it isn't all or nothing....and nothing means the end. I will get to come back on May 21st and try once again to kick some ASS! Come Hell or High Water, that is what I hope like Hell I get the chance to do at that time....
It is also so very hard when you build your mind, your thoughts, your hopes, your dreams up so strong. Get ready to fight in all the ways you can. Be brave. Be strong. Be courageous. NO matter how scared you are of whatever may be staring you in the face, be courageous and face it head on. Convince yourself that no matter how tough things get, to keep plugging on through it. This is necessary. Your WILL is something YOU can control.
To a very large extent, your body isn't. You can't control how your body is going to react and respond to any number of things that it has been wrought with. You can only plan and prepare so much for what may happen....but in the end, it is all unpredictable at best. You have to roll with the punches...and no matter what comes blasting out of the water and flying at your face, threatening to unhinge and undo you, you have to dig in your heels , alter your plans a bit....pick yourself up...and still....
Be more than ready to fight.
14 comments:
I'm so sorry you didn't get to take more. I know that IL2 is so hard on a body and it seems like a lot of people respond in different ways.
God bless you honey!
Jenny Barton
Hi Shannon,
Please accept what we all know about you, you are a strong, brave woman and you did GREAT! You mention that some people on the MPIP have done more bags and yep some have but many others haven't. As you know I'm a little obsessive compulsive about the MPIP, LOL, but the good thing about that is I can tell you that you are not in some minority that did "less than".
Besides the fact that you have to listen to your body, and your docs have to listen to your body, there is the issue that everyone is different but that doesn't mean that everyone that stops the first round of IL 2 before they mentally want to, because their body can't take it, doesn't get to do more rounds of IL 2 or other treatments. I know this is disappointing and you are handling it a zillion times better than I would but please don't feel like you have failed in any way because you haven't. You are a strong fighter and I'm hoping against hope that you will start getting some big time luck in your corner. You already have the best person in your corner, YOU! I am so glad you also have Ed, your docs, and more people than you know who recognize what a strong person you are. I think very highly of how you are handling yourself in a stinky situation. Love, Carver
I am not sure if I have the entire story correct to the word, but I love it so...and now it is your story.
Once there was a fierce giant of whom everyone was so afraid. The monks in the monastery fled when they heard of his impending arrival. All but one… He refused to leave and allow their sanctuary to be pillaged. When the giant arrived, the monk met him in the Great Hall. “Who are you, monk," bellowed the giant,"to stand before me when I will run my sword right through you?” The monk replied, “I am the one who will be looking right into your eyes when you do.” And the legend says that the mighty giant lay down his sword at the lone monk’s feet and wept.
You, my darling, are looking the giant right in the eye. Courage, above all things, is the first quality of a warrior.
Shannon = Warrior
Love, K.
OK,
So they had to stop. THAT DOES NOT MEAN IT WILL NOT WORK!!! There is no evidence that more doses works better than less. NONE. As far as I can tell you are doing great and you have doctors that care enough to make sure you are safe. Again, ONLY FIVE DOSES DOES NOT MEAN IT WILL NOT WORK. Don't be disappointed. Got it? You will feel better shortly - then you can eat without puking. What fun you'll have.
-Katrina
Oh Hon, I am so sorry you didn't get to just kick some major ass, but hoping at all, you kicked some ass anyhow. I will keep praying for you. Sending you so many hugs right now! Love ya
Shannon,
You are an amazingly tough woman. Please know that your body will be back and ready to kick mel's butt. Who's to say that your body only NEEDED 5 bags to kick mel's butt? Since all melanoma patients respond differently to different treatments, I feel confident that 5 is enough for this first round. Please be proud of yourself, I certainly am. Thanks for keeping us updated.
Wow, I just read all these comments and there really is nothing I can add to the mix..you are tough and you are a true warrior..the 21st is another time to fight and you will..you are that brave and that determind..I know how much you wanted to go the course with IL2 but I think you turly have for your body..sounds like you have good, caring doctors.
I'm in your corner like everyone else..be spitfire mad but I know that you will continue this fight and will win...it's gonna happen. love, sue
I just want to say hi and drop off some good vibes. Kim (al) hit the nail on the head, so did everyone else actually but yes you are that warrior! I've read a lot of your posts and though I can understand the whole feeling like a wimp thing and being dissapointed when your body doesn't do what you want it to I have to say: You Are No Wimp! I can only hope that whenever I face my own battles I have your strength and resolve.
Wishing you all the best,
David :)
Just finished reading your blog, and I can't help but shake my head in amazement at your strength, courage and determination. I know you are on a mission to kick mel's butt, and in you mind your fight is the ultimate fight. But your body is telling you enough is enough for round 1. It's telling you it needs a break before you tackle round 2 on the 21st. Listen to your body -- it's on your side too! IL-2 is different for everyone, so accept that you have reached your limit for now, go home and relax, and regroup. We are all rooting for you!
Sending you big hugs and a pat on the back for a job well done for this round.
Take care of you!
Sharyn
Dear Shannon~
Hi Honey...As always, you amaze me. I must have told you that about 100 times by now, right? Well..it's true...You just are..."amazing". :~)
In the face of all that you are going through, you are still so sweet and so strong,and such an awsome, one in a million friend.
Shannon,you did 5 bags of IL-2...I know that you are disappointed that it couldn't be more this first time, but I am SO PROUD..and again, amazed...that you did 5!
I've read enough posts in 5 years to know what nasty stuff this is...and it has to be, to kick Mel's big ol' butt. Still...there you are in the hospital...just typing away, supporting me and others, during all of this treatment. That just blew me away, compeltely....You are just so special.
I wish with all my heart that I could do more for you, right now. You are ALWAYS in my heart, and my thoughts, Shannon...and I want this treatment to work for you, AND IT WILL! Sweetie...your body had enough until the next round. It's okay..You did great...and I know that you will continue to do great, because you are you...the most amazing girl that I know....with a heart of gold.
I love you so much, honey...Take care of yourself, and let your body rest for next time.
Love always...Faith~
Shannon, I'm not sure what I could add to what everybody else has already said but I can tell you this ... 1 bag, 5 bags, 7 bags or more ...You ARE Living STRONG! Your body is doing all it can, and your doctors are listening to it! That is a blessing. Take this week, recover, regroup and look forward to round two! Live STRONG....just keep living STRONG!
Shannon,
I had the same concerns as you. I did 8 bags on my first round, and was worried that "it's either 14 or nothing!!"
My doctors told me that that simply is not true. Every person is different, and reacts differently. It is not how many bags you receive, but HOW YOUR BODY RESPONDS. Yours obviously responded earlier than some (not all) others. Besides, after 20 years of doing IL-2, they still do not know why some respond and some do not.
One of my nurses told me that she'd heard about some guy in California that took ONE BAG his first round, and ONE BAG his second round, and he's been NED for many years since. Urban legend??? I don't know, but if a nurse is telling me, I am going to choose to believe her.
Fight on, sister.
-Christina
Shannon,
I love your attitude... it makes me feel like I could really WILL myself to fight like hell. Alas, though, I think your go-gettum attitude has mine severly whooped. Try not to be so hard on yourself, mama- you can only will your body to do so much, and you have done all you can do for this round. Best not to wear your body out when you've got a few cycles left to do. And there's always next time. You are doing splendidly despite your beliefs!
As always, I am checking in way more than I am commenting (crazy, end of school year overload), but my heart is with you on the journey. You INSPIRE me! Keep kickin ass and takin names!
-Lori
Well, that really sucks. When you get home, have a *chocolate milk* on me.
Love you Shannon,
Your favorite Auntie Karen and Uncle Mikey
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