Thursday, May 30, 2013

The Voice

 And no, not the show, heheh...

Hi again, Everyone!

Just a lil update now that I've bounced back some from the LAST chemo session.  I just love saying that.  THE LAST CHEMO SESSION.  YAY.  Bounced back enough to return to my daily pooch-power-walks today and it was great to be back out there in the fresh, sweet-smelling air.

RE: the title of this entry, I had a chance to talk with my Nephrologist when in the hospital last time and he prescribed a new blood pressure medication, as the one I was on was sporadically and most frustratingly stealing my voice--a dry cough being one of the side effects of said ACE inhibitor.

I'm now on an angiotensin II receptor blocker which also helps with kidney filtration and so far, (after a few decent BP readings taken since this morning), seems it's working fine.  Not sure how long it will take to reflect on the voice issue but I'm sure soon enough.  Hoping it will make future voice-over and singing work MUCH more do-able, literally.

Unfortunately, if I have my facts straight, this blocker, like the ACE inhibitor,  also causes one to retain potassium, so I'll have to continue being extra limiting with the K-rich foods.  (WHY MUST THEY ALL BE SOOOO GOOD!!? ; )

Since it's been so rainy and cloudy here lately, here's a pic of our first rosebud, on a day when the sun wasn't being so shy:

In other nice news, as some of you already know, MY DEAR MOM & DAD WILL SOON BE COMING FOR A VISIT FROM CANADA!  This is music to my ears and will no doubt be some wonderful and healing medicine. Won't be long now and I'm SO looking forward to it.

On the blood-front, tomorrow I will be going in for another test that will show, (after a week), my ANCA levels again, (these are the markers of MPA's activity in the body and the last time I had it done it was juuuuust on the cusp of being negative at 1:20).  I'm TRES curious to see how it is this time as I've had I believe, two chemo sessions since then.

On a side note, I learned at the hospital last time that when I arrived in crisis-mode there back in January, the reading was a staggering 1:800.  VERY different and no wonder I felt like death in a Glad bag back then.

I still have to have that testing fully explained to me, niiiiice and slowwwww-like and hopefully in the lamest of layman's terms.  I know it's a dilution process but that's about it.   If anyone reading is an expert, please do comment.

Soon, in less than three weeks, I will commence with the maintenance phase of this long treatment, consisting of Rituximab infusions.  This stuff has, as I've mentioned before been referred to by fellow MPA patients as, "liquid gold", and I soooo hope that it puts this disease firmly into lasting remission.

It's done in the same manner as the chemo, as a day patient via IV, along with some corticosteroids and a bunch of other prophylactic measures to minimize allergic reactions and I'm honestly still working on not being overly concerned about the side effects of the stuff.  It's the darned Cancerian in me I guess and I'm sure it'll all be fine and will work like the magic it's touted to be.

On that note, I'll be taking part in a Rituximab drug trial at my hospital and here's to that shedding even more light on this serious autoimmune disease.

Et voila, today's bit of bloggy blabbings.

Hoping it finds you all feeling fine and enjoying the day.


: J

Sunday, May 19, 2013

The Jimi Hendrix of the Vasculitis World

Hello again, dear Juan Day Readers,

"What a difference a day makes".  K, well, a few days in my case here but as of today, a helluva turnaround in my outlook and I wanted to share some goodness that I just learned of after speaking with my Nephrologist, who just called me and ON A SUNDAY, ain't that grand?!?   What a guy...

He put my worried/over-researching mind at ease with answers to a bunch of Q's I had faxed him last week and it has really made a difference in the ole mojo-tank here.  THANKS, Dr. K.

Turns out, that the Rituximab treatment will consist of likely, (all depending on the results, of course), 3 courses; each one done much like the chemo, as a day patient.  The second will happen two weeks after the first and, (again, depending on results), 4 more infusions every 6 months or so after.

My fax had also requested that he write a letter of referral to a new Rheumy Pascal found last week, by the name of Dr. Loïc Guillevin, who as we read about, is a heavy in the world of Vasculitis.  

When I asked my doc if he knew him/know of him, his voice went up a couple notches and he quickly sung the praises of this apparently, "Top authority on Vasculitis in the WORLD."  

Well, holy COW and the barn too, and am I ever happy with the notion of being treated by someone who most defineitely knows his shite!  What's a huge bonus is that he most likely speaks English, being constantly involved with international conferences, studies and groups on the Vasculitis front.

All this to say that coupled with the bevy of beautiful and heart-warming emails and messages I've been getting from so many dear friends and family lately, I'm starting to feel so much lighter in my spiritual loafers again.

It's been a few dark days here but I'm back in the ring again and swingin'--when I'm not nappin'...  ; )

And on that note, it's time for luncheon and I'm hungry like the wolf as usual.  I'm thinkin': organic scrambled eggs with green onions 'n garlic on a slice of saltless bread--which I've gotten rather used to, I must say.

So, with renewed mojo and a happier heart, I wish you all a great Sunday and thanks again to everyone who reached out and showed me some much needed love at this time.  You guys ROCK.


: J

Friday, May 17, 2013

The Ole Mojo is a No-Go...

Hello again, dear Readers,

So, I picked up my usual bi-monthly blood test results today and over all, it's pretty ok with all the electrolytes in normal ranges and the hemoglobin count--after only one week of iron supplementation up over one point, taking me to 10.9 and that's great.

What was less great was seeing my kidney filtration rate, (aka GFR), go from 35 to 33.  Also less than inspiring was noting the Creatinine at higher level, (not good), than last time.

I thought that this last round of chemo would have at LEAST given me a few points in the right direction with the GFR but non.

What's really taxing my mojo reserves though, is that due to the extended chemo rounds ordered by my doc, my plans to be in blessed Canada this July with P have been rain-checked.  Depending on this immune system of mine and how fast it recovers from the chemo, we *may* be able to make the trip in September but at this point and staying true to this blog's name, it's juan day at a time and I gotta roll with it all, hard as it is sometimes.

I sure could use a hug right now as I really can't express just how MUCH I was longing to be with my dear family again and my sorely missed Canuckian friends after already 6 months of this heavy treatment and rather isolated existence--now to be 8 months and with another 6 to follow of a new treatment regime.

As I understand it, this new treatment, called Rituximab, along with glucocorticoids, will happen after the last chemo session.  It will be given as a day patient, like chemo, in the hospital and frankly after reading about it, which you can do here, I'm scared.  The side effects and even risk of death and untreatable possible brain damage are enough to make me not want to even do it.  BUT, this treatment apparently reduces relapses of MPA from 30% to only 5% and that is promising.  And on the upside, Rituximab has been referred to as "liquid gold", by some fellow MPA patients I've come to know in a support group and I'll be pulling on their pantlegs about this too.

I need to dig a lil deeper on this stuff. 

And I need to stop crying already, although it IS probably good for lessening the sodium levels at least, plus I'm outta kleenex...

That's it for me today, gonna pet Tony now and have a hot bubbly bath after.  He's plum tuckered out after a long walk and some off-leash romping in the park with two young pooches.  It was a joy to see the ole Pappy running free.

bon weekend, All,


Saturday, May 11, 2013

This juan goes out to...

Greetings, Readers,  

...the one I love, who has been taking SUCH good care of me in these hazy anemic days of late and I just wanna say THANK YOU, my dear Pascal!

He's been in that lil kitchen either loading or unloading the dishwasher, makin' snacks or full on suppers and what a treat it's been as he does a kidney-friendly special of mixed jullienne'd tri-color bell peppers, baked Tilapia with sesame oil 'n lemon 'n Basmati rice that I've been just diggin' into lately.
Seeing as by the evenings I'm usually a complete write-off, (and let's face it, from 2pm on, I'm either napping or trying hard to stay conscious), these P-dinners are an extra pleasure at the foggy end of the day.

Here he is just the other day, working his hubby-magic as I dozed from the sofa.

Happy to report that I'm now on day 3 of iron/b9 supplements, (which I always take with C to help with absorption), and on Monday when I do my usual bi-monthly blood tests, I shall see just how fast these things work.  Hoping fast enough to see even a little mounting of the hemoglobin count from last time, which was lower than ever.

Wishing all of you a sweet weekend with the ones you love and with a "grande" salut to all the hubbies out there who are taking extra-good care of their other halves who may need it right now.


: J

Tuesday, May 7, 2013

A Slightly Longer Tunnel

Hello again, dear Readers,

It's been a while, eh?  I know, it's this damned anemia/prednisone weaning that are just knockin' me OUT every day making posting a little more than I can handle most of the time.  Happy to report that I've been prescribed Iron+C which I hope will help with this ever-falling hemoglobin count.

Subject change:

On Monday during chemo I was sharing with my roomy how happy I was to have had not ONE migraine since before being hospitalized, then last night at 5am I was rudely awakened by just that, a driving spike in the side of my head followed by over the next 10 hours or so, 6 violent rounds of head-pop-off vomiting that left me a sweaty, panting quivering mass each time.  Still nauseous this afternoon and dammit, got sick again today, can't even keep water down.  : /

I thought those days were over but nay.  The meds I usually to take for migraines, (Maltax, a serotonin agonist.), didn't work so good this time, even after two doses and I hope that this is not going to be any kind of regular thing again as it just wracks me to the bone and now that I have to take so many meds at so many different times, the vomiting makes that very problematic.

Aaaaanywho, today is a new day and with it, (after a huuuuuuge nap), I'm sharing the latest news from chemo land that is:  due to recent disease activity, this was not the final chemo session.  I will need at least one more, to quote the doc.