Wednesday, April 21, 2010

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.


Four Winds said...

A very good piece of work written for ease of understanding... so appreciated!

rugbyhubby said...

Many thanks FW - not sure if you'll see my response here but when were you diagnosed?

Anonymous said...

Hi Billy:

My name is Carol and I am a friend of your parents here in Belfair. I am also a nurse. I just caught up on your blogs since Easter and the Seuess made me realize once again ~ YOU ARE AMAZING!!!! Should be no surprise knowing your folks and the genes you carry. There are many of us down here in the Low Country that are in your corner with thoughts and prayers. your

rugbyhubby said...

Many thanks Carol - Mom told me about "all the good folk down in the Low Country" wishing for me! Based on some of the responses I'm getting there are a large number of people wishing for me! I'm very lucky in that regard (among many others!).

Thank you again!