Friday, November 7, 2014

Kidney pain. Nothing? Or...

So after being cold-free for, I dunno, two years or something, the combination of kids running through on Halloween, everybody in my family being sick, a 36-hour cross country golf trip with little sleep and the germ exposure of four airplanes, and being lackadaisical with the hand sanitizer caught up with me.  I'm in the closing stages (hopefully) of a week-long bug that Tamiflu and Levaquin helped minimize.

One of the things I noticed was a pain in my right flank.  It hasn't gotten worse, but it hasn't cleared up, either.  Could it be a pulled muscle from golf?  Maybe, I suppose.  It's a dull pain, doesn't show up often, and when I notice it, it's not particularly painful and certainly isn't sharp, but it feels like a bruise and it feels deep.  Ribs?  Could be -- and that would likely mean a tumor.  Kidney stone?  Could be.  Ache from the random virus that is getting me down?  Could be.  Kidneys being impacted by light chains from recurrent disease?  Could be.

I recall I had this once before, although searching the blog is fruitless so either the search function here doesn't work as advertised, or I didn't write about it.  I had a pain in that area.  It was, if memory serves, a little worse than it is now, because I remember being prescribed Norco for it (Vicodin, essentially).  I went to the hospital, had X-rays and an MRI because I thought it might be a kidney stone, and imaging was negative.  Bloodwork was fine.  No cancer.  I went home with the Norco and a few days later it was gone.

That's hopefully what this is.  Random pain, maybe from the virus, maybe not.

So I went in to the doctor yesterday.  I've not been as religious about seeing him (versus simple labs and weekly visits) as I should be, because while GD is fine for carrying out BB's instructions, he's not a leader in the field and is unlikely to unroot problems that aren't commonplace.  And I figure I see BB 3X a year, and while I'm in complete remission (if not cured, more on that in a future post) that frequency seems fine.

Anyhow, he poked and prodded and slapped me on the back in a few strategic places and from that highly nuanced procedure we determined that it's not a kidney stone because I'd evidently have been shrieking in pain were it one.  (Note to self: check the bottle of Dilaudid and make sure it's not expired if I ever get a kidney stone.)

His answer: if it doesn't clear up in two weeks, I need imaging.

I'll get the full gamut of cancer markers back next week; if it light chain disease or secretory MM returning, we'll know then.

This does segue to the "am I cured" post I just mentioned would be coming up.  It occurs to me that the last time I had this pain, I wondered if it was a kidney stone, but it didn't occur to me that it could be recurrent disease.  I never had a fear that it might come back.

Those graphs under Eli Wallach's face in the post from a few months ago call that into question.

I also asked GD about reimmunization as I'd like to be able to travel with the family at some point and our efforts in having a "nice relaxing family vacation" over the holidays proved to be rather challenging given that I couldn't confidently travel to half the places that we were considering (e.g., resorts in Mexico).  GD's response was that he needed to check the protocol with City of Hope; this is what I meant when I pointed out that he's a good doctor but not necessarily a thought leader here.  I hesitate to schlep out to City of Hope for reimmunization advice, especially since I don't think they'll let you in the building until they've drawn blood and God help me I'm sick of that even though I still do it all the time.

Lastly, I'm giving thought to other tests that I might use to help me restore my shaken confidence in the curative protocol of the TT4 "Lite" Arm (the Standard arm is doing just fine; if I were in that arm, I'd be breathing easy right now).  These include deep sequencing and the HevyLite Assay, which my good friend SR tells me can be ordered by a doctor through LabCorp.  As she put it, the value of this is as follows:

HevyLite helps determine if your immune system has reconstituted itself. So, it tells you if your uninvolved immunoglobulins are being suppressed. And it indicates clonal tides when the involved Ig is out of normal range..in other words it detects the new clone long before relapse shows on IFE or SPEP and it tells you about the heavy chain intact immunogloblin long before SPEP as well.
If deep sequencing comes back negative, AND HevyLite comes back negative, AND the damn pits in my spine have gone away when I get imaging on them in January, AND BB shows me updated information on the TT4 Lite Arm that suggests a plateau exists versus the cliff in the data reported here earlier...then maybe I can close this chapter and get on with it.  :)

Until then, we enjoy every day, right?  Which means I ignore that pain and keep on golfing.

Have a good weekend, everyone!