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SMACKDOWN Victory!
The results are in...
STEROIDS 0 ~ DENISE 1 That's right! I'm finally "clean"!! No steroids in my system for an entire week now! And let me tell you... it was not an easy week! My body (my adrenal gland in particular) had grown quite lazy over the course of the SMACKDOWN! The first 3 days without decadron, I literally slept 16-18 hours each day. And when I was awake, I felt very weak and generally baaaaaad! But on day four things started to improve. Praise God!! Warning! the rest of this post is a downer - proceed at your own risk. At first, I thought the residual off balance/wobbly feelings, and the shaky hand were part of the whole withdrawal experience but alas... no Apparently the goo is still pressing on the "balance center" of my brain. Kind of a bummer really. I was hoping for miraculous improvement I guess. I'm not sure where we go from here. And as queen of "The Sunny State of Denial" I'm not sure I want to know. My gut tells me that if surgery is the only option left... it would be soon... and it will not end well. And that makes me both sad and terrified. Dying is not on my "Things to do this Summer" list. But typing this out has made me realize that I need to call the MO and the neurologist TODAY! Knowing is ALWAYS better than not knowing. Thanks, friends! Please, if you are a pray-er... pray for me. Denise |
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Ohhhh Denise- you have my fervent prayers! You've been so unbelievably put through the wringer with so much lately and you've survived and thrived through it all! I've been in awe and silent wonder how you just keep pushing through it all.
We just need to keep on believing and hoping and resting in Him- He has this Denise- He has this! I know our sistas will join in and I hope you feel all of the loving- healing- energy coming your way!! Love and blessings to you! |
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Denise,
Don't let your mind wander into dark places, stay in that sunny place. I don't think Denial is appropriate. You are living in the moment, and you are not denying anything. You look your adversary right in the eye, AND keep a sense of humor all the while. I am always in your corner. Always. Love Karen |
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I love the State of Denial....even if only for a while. I know you need to find out what, when and why, but I hope whatever you hear; you can still wander back into that blissful state of denial for a while. I'll surely be praying and believing for only good things and miracles for you.
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I think one of the most agonizing places in the world to be is that place of uncertainty. The not knowing. Because when we know, we can be in charge and make a plan of action and DO something. Even if its not something we look forward to Funny how that works
I love you and am keeping the faith for you |
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Denise,
Prayers are in the works. |
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My dear Denise...
To put a lil' smile on your face...YOU ARE SUCH AN INSPIRATION...loved the "Chemo Ninja's!!"...I didn't even see your "attachment"...DUUHHH, so I named myself: SHINKOU: which represents Japanese FAITH!!! Be assured girl, I'm praying, believing, trusting and have Faith that God has His Hand of protection on you!! HUGE HUGS!!! |
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Denise, thinking of you and sending prayers and good wishes. xx
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Okay...
so the neurologist's nurse practitioner called me back within minutes (I just love her!) There's good news and bad news... not tragic, just bad... but if any of you are wondering who the top ten UN-luckiest people you know are... I'm DEFINITELY one of them! I just can't seem to catch a break lately! So... because I like to end on a happy note... BAD news first... Would you believe I've been challenged to a SMACKDOWN re-match!! After being "clean" for only a week!! They want me to go back on the dreaded Decadron. Can you believe it? They're worried that a) the fact that I'm off balance and can't accurately control my right hand/arm means there is swelling AND b) they're also worried that the lack of balance will lead to ANOTHER fall (which I really don't need!) Initially she wanted me to take 2mg/day, but I negotiated it down to 1/2 mg per day, with the understanding that I would increase it a little every few days until the symptoms subside. But, at some point I'll have to wean, AGAIN! Sheesh! The GOOD news... I've been taking Lapatnib (Tykerb) for months with no side effects UNTIL I stopped taking steroids. Then I got everything! Headache, nausea, explosive diarrhea, fatigue...etc... No, that's not the good news! My luck doesn't suck that badly! Give me a little credit people! The good news is that if I start taking the steroids again... they'll protect me from side effects again! At least that's what I think should happen... but I'm relatively sure no one ever listens to my opinion about things like this! :) I still don't know what our "next steps" will be... both docs are out of the office today... but I'm personally hoping for more Avastin. It was working, but my insurance company does not agree that more is better, or even advisable. I'll keep you posted. Thanks for all the promised prayers! I appreciate it! I just love you guys! I couldn't do any of this without you! Denise |
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Denise - You are Tekuto Ki Ariku, cancer assassin. Ward off that stress.
So sorry about the damn steroids. I wish that you were getting better breaks. All this, and you are still so darn funny. Sending love, and chemo ninja luck! |
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Congratulations on getting off the steriods. I hate them and avoid them whenever I can myself. I agree with KDR. Please try to stay positive. We never know when the next miracle will happen. You want to be ready for that. Meanwhile I have my fingers crossed for you that all will go well from now on.
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Stay strong. I think the answer will come and it won't be bad. Don't ask me why I'm saying that but I am. You did a little experiment on yourself and actually suggested another by starting decadron with a low dose and working up slowly until you find the lowest effective dose. That was great thinking (so you know the ole brain is engaged, dear).
I think this "thing" will end up being alright. You might have to work harder at it than you thought but you are getting some answers and results. It will work out because you are so willing to work at having it work out. And you have tons of prayers, thoughts and well wishes on your side too and that always helps. |
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Opps. Didn't see your last post. Good for you to get control and monitor the steriods yourself.
Hang in there. |
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Denise,
I am sorry to hear you will need the steroids again, I was on them for a week and felt horrible getting off so I can't imagine what you've gone through and face again. We do become advocates for ourselves and I am so glad you are still thinking strong and proactive. Sending you the strength to carry this through because determination is what I've always heard come through on your posts. I wish I could give you an arm to lean on for balance in the meantime. Hope you can keep it to 1/2 mg. Hugs , Cathy |
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NEWSFLASH! Those of you who are old enough to remember... imagine the teletype sound in the background! So... the new plan is for the MRI to be Monday or Tuesday of next week... instead of 6 weeks from now. Then I see my neurologist on Tues. afternoon. When he views the scans, hopefully... fingers and toes crossed... there will be MRI evidence that things were going well while I was on Avastin... but now that I'm off... not so much. And then, dear friends we start to present the evidence to the warm fuzzy people who make decisions about whether my insurance will cover more Avastin. Which of course they will because all their decisions are patient-centered, NOT money-centered. So, no worries there... right? Oh well - I'm still glad I called. I feel better already just having a plan. Thanks for all the support my friends! Again... I don't know how I'd cope without you! Sending love to all! Denise aka ~ Tekuto Ki Ariku, cancer assassin :) |
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Stay strong as I know you will.
Thoughts and prayers are coming your way. |
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Perseverance and a plan...way to go girl!!! You're winning!!! :)
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We cant do any of this without you either Denise. You are such a light...keep strong
and prayers for you. Lois |
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Telex is whirring madly......
Glad you have a plan and glad the MRI will be sooner. PRAYERS are with you Jenny x |
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I am working on an alfoil cap just for you, Denise - to focus those positive vibes. Will be thinking of you early next week, and hoping for better news.
Stay strong for all of us..... Pam. |
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So Denise, when you are through this next stage, you have to start to write a book, or a blog, or something to share your incredible spirit to the world. We are all very lucky to count you as a friend, but I think the world deserves you too! So, bring on the Avastin and loads of good news next week. I am a prayer too, and I will continue to send up some special ones!
Love Marie x |
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Prayers being sent your way Denise x
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((hugs)) Just want you to know Im thinking of you and praying for you. My brain MRI is Monday as well, and I will have the results a few hours later at my rad onc's office. Hopefully you don't have to go too high on the steroids to get the symptoms under control. If my tumors have grown or, heaven forbid, if there are more of them, I will be doing cyberknife, and I'll be back on steroids too. Time for both of us to catch a break!
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Oh, Denise...cancer sucks, 'roids suck, and most definately insurance companies suck! Fervent prayers going up for everything involved.
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Marie - I've always dreamed of writing a book... even before I got cancer, strange, but funny things always seem to happen to me... or around me. The problem is once it's all written down... I don't know how to get it published... and I can't imagine anyone paying money for it!
I never made my blog public because as a teacher, I can actually be fired if my bosses think what I write is "innappropriate" ... profanity, criticism of them...that sort of thing. I can't risk that - my health insurance is through them! But it just occurred to me that I could use a pseudonym... like the Cancer Vixen did! I'll have to mull that over a bit... hmmm KsGal - I soooo hope your MRI shows only the small lesions we already know about. If that's the case, Cyberknife should be a breeze! Just the break you've been hoping for, and deserve! I'll be thinking of you on Monday, :) Thanks for the prayers friends, and for the moral support! Denise |
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Hey Denise
Use your ninja name. Just don't release the code. People would be looking for the weird named Asian! Cathy |
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oooooo Cat
You are clever! and devious! I like that! :) Takuri |
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Sending my prayers, as always, Denise. Hope some more avastin gets approved soon! Hugs.
Barb A. |
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I'll look for your book ... Takuri ...
Mikachi |
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Dearest Cancer Slayer,
I see that look in the docs' eyes. I hear the worry in the nurse's voices. They are concerned. Too familiar with bad scenarios that can look like this. I just refuse to identify with my emotional reactions. The experience is duly noted. Acknowledged. Even actively participated in when need be, as you have been doing Denise. You KNOW when to come out of the sunshine state of denial. I don't think it's that, personally. Fully aware, you are choosing to live on the sunny side of the street. Your fears are not truth. Decidedly, leave no room for imaginings to distort reality. This isn't a time to postulate or assume. Don't blur reality. Just live in The Moment! Which is what you naturally do, I think. Don't let the voice in your head rule you. You have this moment. And this... Don't go anywhere. This Moment is safe. The love and prayers offered to and for you will sustain you. Fear can't exist if you are full of the Light of hope. In my heart I believe in miracles. Not bad endings! Steroids do protect you from the side effects. Even they are not all bad! They're good for something! I love that you negotiated. I would and have done the exact same thing. YOU are in charge of your team of medical experts. It is YOUR body after all! Do not believe in the story that seems to be presenting itself to you and scaring you. Love, prayers, genuine caring and enorrrrmmmmoussss admiration -- oh and true appreciation for your wit and wily ways. Andi |
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Andi and friends ~
Thanks for the votes of confidence... all of them! I need that! It's one of the reasons you guys well never ever get rid of me! You feed my spirit! So far the side effects are still with me. I think they may have lessened a little, but I admit that might just be wishful thinking on my part. I tend toward that, only usually I call it optimism. After talking to the neurologist's NP and my MO yesterday... both offices and my nurse navigator called to check on me today. I figure it's one of three possibilities... 1 - They are exceptionally compassionate and concerned medical professionals 2 - I'm not concerned enough, and they're more concerned than they should be 3 - They are worried because this is a dangerous situation... and I can't see that from my throne room in the Sunny State of Denial Personally, I'm partial to option #1 myself! :) Now...everybody hop on over to the "Keeping your mind off BC" forum and post your Chemo Ninja name! Then pick one of the other funny threads and put a giggle in your heart, and a smile on your face! Laughter is the best medicine! Right? Love to all of you! Denise - Cancer Assassin! |
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I vote option #1 too. Has to be. Besides how could they not care about you? You must be a very special person to them and if you've told them you are a queen AND ninja cancer assassin they would most definately want to keep tabs on you. I'm hoping the weekend goes fast for you.
I'll be thinking of you Mon. while at my Dr. appt. and saying some prayers. Mikachi |
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I am going with KATSU...!
A shout to awaken an enlightened state (satori). To focus ones energy! It fits. Also read it means victorious! Thanks Denise for arming me! And -- easy to remember... |
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Denise,
It's standard procedure for them to call you back the next day to check on you. I've done that many, many times. Our hospital has an 'on-call nurse line' available. They would always follow up our conversation the next day or two to see how I was doing. And the nurses of the oncology department are usually very good at following up those who are undergoing active treatment. I'm glad you are being closely 'followed' ... :) |
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Option 1, keep your chin up, ninja woman!
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Hey Assassin!
Sorry to read of your ongoing tale of woe. Sheesh, you really are due for a serious break. Stay on your throne, oh Empress of the Land of Denial, we have your back. Prayers heading heavenward. |
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Denise, please know that I am sending big hugs and prayers from the Great White North for your MRI to show only good things!
Sorry you have to go back on the steroids, but it is what it is. You are such an inspiration to all of us! xoxoxoxoxoxo! all the best caya |
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Laurel - thanks for the unending prayers and the elevation to Empress! Who knew you were so powerful!?
Caya- You are sweet, but I don't feel inspirational at all! I feel fat, dizzy, and frustrated!:) Everyone Kind Enough to Check in on Me - Heading off in a few minutes to find out what the next plan of action is. Hopefully, this MRI provides the kind of evidence my docs need to convince the insurance company to get on board. (I know I usually like to self-diagnose but... except that "Mickey" looked a little crowded this time... and the necrotic area looked less dense... I don't know whether this shows what the ins co needs to see or not) Stay cool everyone - especially my East Coast friends - it's going to be a scorcher today! Denise |
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Denise,
I hope everything went well today-you have such a dedicated compassionate medical team and that helps so much-I agree with option #1. I am sending alot of positive and white light to you! Caroline |
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Denise I have been trying to figure out how to put into words the emotions I felt when reading your posts. I can't do it. Love and prayers are always being said for you.
Cool hugs to you oxo |
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