Thursday, June 27, 2013

Remission Possible

Hello again, Dear Readers,

Just had to share a few good things with you all, starting with how the new treatment IV session of Rituximab went at the hospital yesterday.

In a word:  GOOD.

There were a few reactions about 45 minutes into it including a slight fever, an ear, nose & throat blowout that went pretty strong for about an hour and then settled, but THAT WAS IT.

It was an 8 hour day at the H and I shall be back there for another course in two weeks.  I'm told by fellow Vascies, (people with Vasculitis ; ), who have had that treatment, that the 2nd round might be less reactive and that's just fine by me.

Then not another one for 5 1/2 months!  *yummmmm*

(I also now only have to get blood work done monthly.  : )

What was amazing after getting home and enjoying my usual post-hospital bubbly bath is, I DIDN'T have a nap!  And no naps at the H either.  Yes, Friends, I was blown away to see myself awake I think for the first time in many moons for a whole, (and lonnnnng) day that started at 6:45am, SANS-nap and relatively with it to boot. 

Granted, the hours between 9:30-ish and midnight were spent nesting with P, but still, I was really amazed that I stayed awake for so long after taking in so many heavy drugs that day.

I think part of that was pure relief and thankfulness that it all went well, as I know I for one was undeniably wary knowing of the drug's many serious possible side effects and reactions.

That and the 100 mgs of methylprednisone pumped into me before the Rituximab.

Now, to note how I am TODAY after this new drug.

In two words: NOT BAD! 

And by not bad, I mean:

-I slept last night from midnight to 5:45am, (garbage trucks came early), but the sleep itself was great.

-I went for my usual 4k pooch hike by the river this morning without a hick-up.

-And even though it's only noon, I'm feeling OH SO MUCH better than I did after chemo sessions, which would usually put me outta commission for 1-2 days.

On the subject of chemo and a little mystery that's been plaguing me since I noticed it some months ago--today, my armpits began to smell, (just a tad, but yay!), like armpits again!  I had lost all body odor in those pits o' mine for the longest time and until now, I didn't know if it was a side effect of the Prednisone, the daily antibiotics or the chemo and now I know.  It's that darned chemo.  It's been a month now since my final session and even my hair seems to be falling out less.  *like*

So there it is, a wee update with lots of good mojo for me to celebrate.

I'm so looking forward to feeling better and better and getting on the mic again for a number of new projects that have come my way with the best of timing.  I know, lil by lil, Juan day at a time 'n all, but YAY.

'Til next blog-time, be well All.


"Remission Possible-J"

Thursday, June 20, 2013

THEEEEE Day Has Arrived!!!

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!!!


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.


: J

Saturday, June 1, 2013

I'm In!

Greetings dear Readers on this (finally!), sunny French Day,

Just a wee note to share that the great Professor/Dr. Guillevin, "top international authority on Vasculitis", has accepted me as a patient and I have an appointment for June 14th.

I'm really looking forward to meeting this man and learning more about Rituximab and all the new trials being done, using it both as aggressive treatment and for maintenance.

For those interested, here is a link to an interview with him on that very subject.

In other news, today I got some blood tests back and while most of it is great: my GFR, (kidney filtration rate), is up again at now, 36 (YAY!), and the hemoglobin is but half a point away from normal, (DOUBLE YAY!), my cholesterol however, is pretty darned high and me no like.

As it was myself who requested the cholesterol levels be checked, (to a different doc), I faxed the results to my Nephrologist along with some Q's, (of course), and hopefully this will be fixable with diet and not more damned pills.

Fingers crossed...

Perhaps it's just another effect of kidney disease and the lil beans just not being able to process saturated fats as well as they used to?

And regarding "The Voice", I've been on these new BP meds for 4 days now and so far--minimal hoarseness in the pipes!  (TRIPLE YAY!)   That loss of vocal presence was rather getting to me as it's amazing how much sounding like crap can affect one's morale.  It's still a lil scratchy at times, but not as bad as it was.

So boom, there it be 'n cheers for reading.

Have a sweet weekend, All.


: J