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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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