My dear Friends, Family and Blog Readers,
I write this post today with an incredible feeling of relief, wonder and deep happiness, for this is a post I have been waiting to write for 6 long, tough months and to actually be doing it is just surreal and here goes.
I, Juanita Grande, after all these drugs and chemo and eating uber-well, am now officially IN REMISSION from Microscopic Polyangiitis!!!
YES! YES! YES!!!
It's TRUE and I still am whirling with the news that I discovered only yesterday when at the hospital for the signing of the drug trial papers for Rituximab. The doc-in-charge who was briefing me on how the study will go just kinda casually mentioned while looking at my file on the screen that indeed, as of the last ANCA levels blood test done at the hospital, I AM FINALLY TESTING NEGATIVE!!!
Never thought negative could be such a positive word. :)
And to learn of this heart-hugging, mind-melting, soul-blowing news on the last day of my dear parents' visit here in France, was just the cherry on the already unbelievably delicious cake!
When I got home and shared it with them we all hugged and cried and laughed together, basking joyously in this blessed news I have been soooo longing to hear for so lonnnng and wow. Just wow. I am still in some kinda shock!
Here's a photo I snapped while in the cab on the ride home as I drank in this great news:
Now begins the maintenance phase of this lonnnnnnnnnng treatment, which will commence on June 26th when I do another IV day in the hospital for my first infusion of Rituximab.
This will be followed, I believe, by another of the same 2 weeks later and then---NOTHING for the next 5 1/2 months!
Follow-up shots will go on every 6 months like that for 18 months and I will still be on Prednisone, (but only 5 mgs/day thankfully), for that time as well.
It will be immensely wonderful to have such a long break from all this medical activity and here's to this "liquid gold", medication being just what it takes to kick this form of Vasculitis I, (no longer!!!), have to the bench forEVER.
Of course, the kidney regime and further treatment for it, (in the form of the BP meds which also improve kidney filtration and yes, the new ones steal my voice too, it seems), will continue, as that's a whole other ball o' medical wax and I will keep up the good fight, eating right and staying fit for LIFE.
But for now, MORE CHAMPAGNE!!! (Just a smiiiidge ; ), and even more light and hope and joy and thankfulness--all in time for summer!
And on that note, I shall spend this rainy and stormy day taking it slow and eeeeeasy as even though I'm starting to feel better these days at last, I'm plum worn out and at not even 9am, I'm already thinking about a nap, heheheh...
Be well, All and thanks again to everyone out there who's been keeping tabs and checking in on me during this whole affair. It means A LOT.
++++++++++vibes,
: J
I write this post today with an incredible feeling of relief, wonder and deep happiness, for this is a post I have been waiting to write for 6 long, tough months and to actually be doing it is just surreal and here goes.
I, Juanita Grande, after all these drugs and chemo and eating uber-well, am now officially IN REMISSION from Microscopic Polyangiitis!!!
YES! YES! YES!!!
It's TRUE and I still am whirling with the news that I discovered only yesterday when at the hospital for the signing of the drug trial papers for Rituximab. The doc-in-charge who was briefing me on how the study will go just kinda casually mentioned while looking at my file on the screen that indeed, as of the last ANCA levels blood test done at the hospital, I AM FINALLY TESTING NEGATIVE!!!
Never thought negative could be such a positive word. :)
And to learn of this heart-hugging, mind-melting, soul-blowing news on the last day of my dear parents' visit here in France, was just the cherry on the already unbelievably delicious cake!
When I got home and shared it with them we all hugged and cried and laughed together, basking joyously in this blessed news I have been soooo longing to hear for so lonnnng and wow. Just wow. I am still in some kinda shock!
Here's a photo I snapped while in the cab on the ride home as I drank in this great news:
This will be followed, I believe, by another of the same 2 weeks later and then---NOTHING for the next 5 1/2 months!
It will be immensely wonderful to have such a long break from all this medical activity and here's to this "liquid gold", medication being just what it takes to kick this form of Vasculitis I, (no longer!!!), have to the bench forEVER.
Of course, the kidney regime and further treatment for it, (in the form of the BP meds which also improve kidney filtration and yes, the new ones steal my voice too, it seems), will continue, as that's a whole other ball o' medical wax and I will keep up the good fight, eating right and staying fit for LIFE.
But for now, MORE CHAMPAGNE!!! (Just a smiiiidge ; ), and even more light and hope and joy and thankfulness--all in time for summer!
And on that note, I shall spend this rainy and stormy day taking it slow and eeeeeasy as even though I'm starting to feel better these days at last, I'm plum worn out and at not even 9am, I'm already thinking about a nap, heheheh...
Be well, All and thanks again to everyone out there who's been keeping tabs and checking in on me during this whole affair. It means A LOT.
++++++++++vibes,
: J
18 comments:
Such awesome news friend! I saw Haoug (Wang) at The Bird today and he had just read that you were sick and passed along that he was very concerned and wished the best for you! Now I'll be able to pass along the good news...I know he'll be thrilled. (the 5 Stars was awesome BTW) So glad to read about this, you are awesome and an inspiration! :)
Thanks so much Jim! Next time you're there, eat some celebratory colors for me too, heheh...
Still reeling with this FABULOUS news!
Hope to see you in the Fall!
(((hugs))),
: J
Ma belle,
You did it! Your body & soul did it.
I feel like congratulating each and every one of your cells for fighting so well.
I'll start from your left pinky toe. ; D
Miss J. I am smiling from ear to ear!!! Congratulations, this is wonderful!! xoxoxo
Thanks, Jude-belle! : )
I'm still sponging it all up, it seems.
Processing.
LOVING IT.
(((biiiiig hugs))),
: J
P,
Me and my L pinky toe will be waiting on the couch...
r's,
; J
That made my day!
All that courage and determination and research and scientific cuisine paid off big time!
Cheers,
nobby
Tremendous - I'm absolutely thrilled. Your meritorious efforts have paid off! A box of Marlboro reds and a bottle of Dalmore to celebrate?? And by God, what extraordinary timing! Masses of love to you....
Incidentally, Mr. P, you're a knight!
NITA! I am so happy for you!!! But I am also so proud of you for fighting so hard, learning so much, and being pro-active about telling others about this! You are an inspiration to MOI! And I love you very much! Congratulations...Love Spumoni xo
YAY!! Such amazing news...I am smiling over here for you! All I can say is "YAY!!"
Nita...Girrrrrl you are so inspirational and shit. Mad props to you homeie. hehehe But seriously GF this is the best news ever and it made my day, week, year, millenium. Take it easy though, remember Juan day at a time. Much love G coz you especially Gangstar Yo!
WOOOOOOO-HOOOOOOOOOOOOOOOOOOOOOO!!! This is such fabulous news!!! I am so proud of you, and so thrilled for you, and so excited for you, and so happy, and I just want to do a whole whack of happy dances for you!!! Gee, can you tell how happy I am to have come home to this news? :) :) :) Congratulations, darling! *muah*
Thanks mucho, mes amis!
It's a real good feeling indeedy and all the fuel I need now to go on and keep up the good work!
(((hugs 'n the very best of vibes back at vous))),
: J
Happy Happy Joy Joy!!!!
Oh how wonderful Nita! I'm so so so happy to hear this amazing news. Keep shining your happy, shiny light. Be well. :)
Merci beaucoup, palettes, : )
Onward 'n UPWARD.
: J
"Never thought negative could be such a positive word. :)"
Brava, darling!
Smeeches, Sarah...
: J
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