1 outta 10

So I've been unbelievably busy at work and at home.  The time in VT was great but since my return it seems there hasn't been enough time in the day to get anything done.  I'm in my third week of this cycle and return to SVCCC on 27 April for my checkup.  But I haven't really updated things from my last visit.  Some of this will be stream of consciousness so apologies in advance but its been weeks since I got this info and I just haven't had the opportunity to put "pencil to paper."
My numbers are in line, IGG and IGM are coming back in towards normal (from low) and IGA (the primary culprit) remains normal.  RBC/Hemo/Hemato are all below normal but closely approaching normal so in a good position.  All other indicators are in place and good.  My night at the hospital (after day one of the harvest) had a variety of tests performed, all but one of which came back negative.  The "sputem" test (such a refined word) turned up the H-Flu virus (if I'm remembering this correctly) which is closely related to a bad cold.  Bottom line, the doctor decided it would be best to get a variety of shots to help fight off future infections.  These shots were part of my one big day of many tests.
Now if you remember from my Ohhh Loopy....I'm home post, I had a mini-lyposuction done to test for existence of the disease within the fat cells of my body on that day.  They ran this test due to the late peripheral neuropathy that I was experiencing.  There is a 1 in 10 chance that a MM Patient may have this issue (and I'm sorry, but I'm not sure if that's related to my form of MM, IGA Lambda, or MM in general.)  Guess what, I'm 1 in 10!  Now I'm not sure if I fully understand what this means but I've been told not to be concerned and I'll do my best to explain why here.  Unfortunately, the report, which has two pictures (labeled "Congo Red" and "Polarized Microscopy") has only one line of diagnosis, "adequate fatty fragments focally suggestive of amyloid deposits (focal congo red positive under polarized microscopy)."  But here's my interpretation and it's relation to the bizarre, delayed p/n I've been experiencing.
There are two types of Vitamin C you can buy: regular and time released.  The regular VitC is water soluble: your body uses what is needed and flushes the rest out.  The time released VitC is fat soluble so it stays in your body for a longer length of time as it's dissolved within the fat cells so takes longer to digest (for lack of a better word.)  Where MM is a bone/blood disorder and you expect to see the proteins running rampant within the bloodstream, in my case, the proteins are also present within my fat cells.  So where I may finally get to a point where my blood tests are showing me in a complete CR, the potential exists that the proteins could still be present in my fat cells.   So the Docs are all saying, we want to keep business as usual to make sure we eradicate all presence of the rogue proteins before we consider me in full CR.  
Keeping this same line of thought, if the Velcade got into these same systems, it may be taking longer than normal to get out, thus the delayed effect of the p/n that I've been experiencing.  My feet have been better, but I'm still limited in what shoes I can wear and for what length of time I can be on my feet.  Now my feet are more numb than anything else.  Also, based upon the few acupuncture sessions I had, I can see a definitive link between my feet and my hands - when my feet are hurt/numb, my hands are are hot/numb.  If you remember, at the end of each chemo cycle, approximately 3 days after the last Velcade shot, my hands would get abnormally hot.  I think this was my first sign.
For now, I'm on 20mg of Nortriptylene and supposed to be on 300mg of Lyrica per day.  As I can never remember to take my mid-day pills, I'm only taking 200mg of Lyrica but keeping up with the Nortrip.  Unfortunately, I still can't seem to get myself out of bed and doing my exercises which is driving me nuts!  But I am getting closer.  My goal is to get back into that swing within the next three weeks.  My hair is starting to come back but still not everywhere. I believe I'll have to trim one or two more times before I finally let it just grow but I can see it coming.  Of course, now my wife is saying she likes me bald (I still hate it!)
So bottom line, the Amyloid Deposit, as I've been told, is not something to be worried about, but I am glad that I'm aware (one more thing to check and confirm).  I'm hoping to get more detail on what this means when I'm back on the 27th.  Until then, I've got about a dozen other things I need to get done.
One last thing, which I hope to update further in the near future, I've added a page (linked at the top of my main page) which is the drugs and their effects.  I've tried to start covering each of the drugs I've been taking, their purpose and the effects I've seen.  Each of them have a slew of potential side effects and warnings, which for me, never seem to be applicable (except for hair loss!)  So I wanted to put down in writing what was happening to me and hopefully that will help someone else out down the road.

Bye for now.

Let Loose The Seuss!

More than a week has gone by and not a word on my blog,

The readers down in blog-ville were running agog.

“What could have happened to that glorious author,

was he stuck without tools, a phone, a catheter?”

Well it seems, grateful readers, that the time that doth past

was spent on quite an adventuresome repast.

Add to that a somewhat substantial workflow

It’s difficult to say where all the time go!

Vaction in Vermont, for six lovely days

It was stress-free but action packed in ways.

Daytime saw poodles and bunnies and swingsets

Hidden treasures, woods and lots of cool insects

Ice cream, teddy bears and other fun toy-sects

Mario, Luigi and “Wii would like to play”-sets.

Where evenings were more focused on the adult time

Nice vino, good dinner and…well a whole lot more wine

We talked, shared stories, forgot the daily grind

We even saw an ‘80s band that knew Simple Minds!

But then later, we would break into my favorite libation

A bubbly amber substance from some foreign nation

And at times like these as everyone knows it

You break out the Wii for a few laughs and how goes its

Alas, all this ends when you must finally return

To face that dreaded ogre that is work and your churn.

The 5 hour drive does not help in the little

Knowing soon you’ll be attached to a desk by the middle.

But you Bloggers must be wondering, “why he doth rhyme

Like some two-bit hawker seeking a dime.”

Well it seems that the only way my daughter would sleep

Is to tell her a rhyming story to help earn my keep.

And in that store, what was found, soon to be my noose?

Just a book, aptly named, “A Hatful of Seuss”

So Sneetches, and Ooblocks and Zax’ do beware

My rhyming, my timing, and whining is clear.

Finally a post, though no update is new

At least it’s different than Horton Hears A Who!

But the blog watchers in Blogville would soon look askance

If I didn’t say something regarding my stance.

Numbers stay good, my feet still circumstance

I don’t believe I’ll soon be attending the dance

But Hellboy remained absent (at least at first glance)

And thanks to “UPS Bill” for keeping meds in presence

That’s it for now, my tongue be doth tied

Arrivederci, Sayonnara, Adios and good byed!

Only in Vermont!

While at the Ben & Jerry's factory, during the tour, my phone rings (and of course I have the "DIVE, DIVE - NUCLEAR DISASTER" sound for my ringtone.)  I turn off the ringer and don't answer the phone.  After the tour, I listen to the voicemail and it's Bill from UPS saying he tried to deliver and noone was home but was going to give it another try if we could coordinate being there.  I called back and Bill told me he lives up near where we're staying and said he could drop it off on his way home.  My friends coordinated with their neighbors to accept the package (it took three calls to find a neighbor home on a Sat afternoon in VT that was 78 degrees and sunny!)

Bottom line, thanks to UPS Bill, I got my package and all is right in the world.  My only question, would this have happened in the City?  Happy Easter all.

The wonders of a 21 day cycle!

We are visiting friends for Easter Weekend so apols to all that are anxiously awaiting my next update. I will give all the details later when I have some time but for now, suffice it to say, I'm taking it easy and enjoying the GORGEOUS VT weather!

Well actually right now I'm enjoying the weather on hold with CVS trying to figure out where in the hell my next scrip of Revlimid is. The problem with a 21 day cycle and Rev is the Rev is a controlled scrip and there is no auto renewal. If you can't get an appt till Wed that means they have to call in the scrip that day and then it's overnight delivery on thurs for arrival on Friday. We're on vacation so needed to get that delivery to VT. I got a call late Thursday telling me they didn't get the scrip from svccc in time so it will now be delivered on Sat. Again, this is a controlled substance so someone has to sign for it. But it's guaranteed delivery by 1030.

But its also Sat in VT, Easter weekend. And as I said I'm enjoying the great weather, on the back deck, on hold with CVS in Lenexa, KS for 19 min and 08 seconds now. Can I blame my sunburn on them? I wonder what the guarantee guarantees? Oh well, we'll head to the Ben & Jerrys factory and deal with the Revlimid later!


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