Wednesday, April 16, 2014

Milestones, Tests and the Sleepies ... OH MY!

April 15th, 2013 was my final radiation session so ... 

April 15th, 2014 marked one year of cancer remission.  

Yay, right?  

I would have liked to have been in a better mood on that day.  I've made it a year with no reoccurrence of the blasted M-protein.  It's a big deal.  I celebrated by having all my blood work done because I've been feeling so miserable.  My cancer remission continues ... I got an email today from my oncologist that there is still no sign of the M-protein.  

That's fantastic. 

Now, if only I could feel as good as I did before February 2012.  I'd even take how I felt in the summer of 2012.   At this point, I'll take how I felt a few months ago.  Because, even then things seemed a little bit OK.  

Has Boris, my disease monster, ever gone into hibernation (remission)?  It sure hasn't felt like he's ever truly gone away.    Part of that is attributed to the side effects of my medication, the other part is my in-ability to slow down.    So, I've still been fighting away, daydreaming of a time when I'll know what that normal feels like again.  

Maybe Boris did hibernate for awhile.  If he did, is he awake again?  Is that what this is all about?  I did that bloodwork too. 

Want to know what I found out? 

I don't know. 

The trouble with Wegener's is that it doesn't have it's own blood test.  There's a series of blood tests, all of which are looked at as a whole and then a determination is made.    As usual, the majority of my blood work was squeaky clean. 

For example, you might look at me and see a fat girl.  I bet a million scenarios run through your head ... high blood pressure, diabetes, high cholesterol, ... any number of conditions associated with being overweight.  

My blood work has never shown that.  Aside from Hashimoto's (which is finally managed by my thyroid meds), my numbers are beautiful.  Perfectly low, perfectly in range.  My EKGs have always been gorgeous.  That's what made everything so damn puzzling when all this was happening.  Nothing was showing.  

The only time there's ever been an indication of something amiss in my blood work is my antibody test, and my CRP (C-Reactive Protein).  And, as usual, those numbers are not in range again.  In fact, the ANCA (antibody) is on the rise.  

I know this isn't a 100% indicator of the disease activity.  This is a very well known fact for people who have to deal with this butthole of a disease.  It's a lot of knowing how your body reacts and ... listening to it.  

Yes.  Listen to your body.  If only I could practice what I preach, right?!   I will when my life affords me that chance.  Until then, I must keep pushing forward.   

Anyway, it was a minor relief to me to see those numbers on the particular tests.  No, I don't want them to be going up.  It's just that I feel something isn't right ... and when all the other tests were coming back in their usual healthy numbers I was getting frustrated. 

I've worked too much in my life.  This isn't the first time I've worked a bunch.  I've never had this fatigue, this complete inability to move forward, except when I was in the midst of all this diagnostic process and during radiation.  Sometimes it feels like I cannot even pick up my feet and walk.   This isn't just being tired from too much work.  

Remember that part about knowing how your own body works?  It's true.  Only we know when something is TRULY not right.  For me, I really know.  I've become an expert on how my body normally functions and when it's misfiring.  

I've been in remission with Cancer for a year, I'm still going to bat against Wegener's, and ... goodness gracious I AM FREAKING TIRED!!!!!!!  I should already be in bed but ... I don't have a lot of time not working or doing laundry so ... I'm sitting on my couch and enjoying the quiet, except Loki is snoring.  

I hope that next year at this time, I'll be writing about a two year milestone. Maybe on that day I won't have to do my blood work to try and find out why I feel so lousy.  I will be thinner, I can promise you that.  

1 comment:

  1. Congrats on being cancer free! And I agree with this entire post. This "butthole disease," is so strange and confusing. The ONLY thing I've really learned is that before Doctors can give me warning, my body does. BUT, the side effects from the meds feel like the disease itself, so it can be confusing. I hope you get a break and can rest so you feel better!