Final results of Gist Week

Hematologist results are all good!! The one key number--kappa free light chains aka the dirty bastard--is still as low as it's ever been. Normal is 3.3-19.4 and my lab results show less than 3.3...still at that level 3 months after stopping chemo. It was 79 when I was diagnosed. WooHooo! Thanks for the prayers and encouragement one and all, and thank you God for all the blessings you've given me throughout this journey. Now I can not think about this for a few months.

So begins KATE (Kat After Transplant Era), Cycle 6. It's 6 because that's how many oncology appointments I've had. With this, you kinda live in little chunks from oncology appointment to oncology appointment. That phrase "new lease on life" is real. It feels like my contract has been extended for another 3 months. Here's the closing song for Gist Week. It's about trying not to think about it for the next 3 months. Roll credits. 

http://youtu.be/LHJhyrrUTgc

Results of Gist Week--Episode 1

Part 1) "Live and Let Liver" Liver gist says things are great and I'm "the example of recovery from this disease." We joked around about me being able to die from something else and he said that would be great unless I get killed by a pick-up truck while I'm out cycling in the near future. If that happened, he said he'd stand on my grave shaking his fist saying, "You wasted all of this!" Sounds pretty morbid but it was really funny at the time.
 
Part 2) "Kidney Time" Kidney gist agrees about how well I'm doing and said I could cut my last medication dose in half. If I don't have any issues with fluid from that after a few weeks, I can discontinue it. The recovery of my protein loss through my kidneys has slowed down but is still improving and may continue improving for another two years. Last test, in March I was improving by more than 6 grams per day and now I'm down to a little over 4 per day. But, as my phlebotomy buddy and I say, "Slo motion better than no motion." AAAAND...I see the kidney gist one more time in 6 months and if things are still doing well, I won't have to have regular visits with him so I'm not only reducing the number of medications, I'll be reducing the number of physicians. Love ya, Dr. Parikh but it's time for me to move on. Really, it's me, not you.
 
So, great news across the board today but tomorrow is the big one! C'mon plasma cells, don't let me down!

The Gist of What I'm Sayin'--Part 1

Tonight, I'm talking about the gists...both kinds in my vernacular.  The first is how I refer to my medical specialists--gastroenteroloGIST, nephroloGIST and oncoloGIST.   That's the subject for part 1.  In part 2, I'll get to the gist that refers to "the substance or essence; the main point."

This week is Gist Week in my medical schedule because I have appointments with all my main peeps--liver gist, kidney gist and cancer gist. Now, you may think Gist Week is cool, maybe even like Shark Week on Discovery Channel.  The only similarity they share is that they both involve lots of blood---mine from a phlebotomist stick and not a shark bite, going into a tube and not the ocean.  That's about the extent of the excitement in my week.  But I do get to see my buddies at the phlebotomy lab at Stoneridge.  As I said on Facebook after my last visit, it's nice when the 60-year-old phlebotomist and I can quote the same lyrics from Common simultaneously--"Slo motion better than no motion."  :D

While having all of these the same week really messes up my work calendar and probably causes my admin to direct some not so nice words my way (even more than usual), it's nice to get them all done within a few days of each other.  It just condenses the time I have to think about my disease and lab values, and gives me more time to forget I'm dealing with this.

This will be an important diagnostic week for me for several reasons.  I'll go through them gist by gist.

Liver gist--I'm hoping my liver has softened and gotten smaller so he doesn't make the "this thing is really effed up" face he usually does when examining my liver, if that's even a face a 70ish year old Harvard educated physician could make.  I know my liver function tests are all normal because I got a sneak peek before I went on vacation.  I wasn't feeling well and Tammy wanted to check a few key things before I left.  Thumbs up!

Kidney gist--I'm hoping the protein level in my urine is low enough that he'll take me off my last prescription medication.  One little pill twice a day may not seem like much, especially considering what I've been through, but for someone as anti-medicine as me, it's just a daily reminder that I have Amyloidosis and it would be great to be free from that.  If the protein level has to be normal to take me off of it, it probably ain't happening this time. According to my spreadsheet then it won't be until September 19.  This assumes the recovery is linear (which it probably isn't damn you diminishing returns) even though it looks like this.

Here's the waterfall chart for my protein levels showing how much it's come down since diagnosis....yeah, it's nerdy but I think it's cool....so it is....

Cancer gist--The other gists are on Wednesday and Dr. Efebera is on Thursday.  Before my appointment with her, I have an ultrasound to measure my liver span.  It was 24cm last summer and in January it was 18.6cm.  I don't have a big enough data set to have any idea what it might be this time.  Based on how it feels, it's down a lot...I can sleep on my stomach again, YAY!!  I'm hoping it's below 13cm but anything below 15cm will be a win in my book.

Now, the real magic numbers with Dr. E are my free light chains.  Those are the bad proteins produced by the aberrant plasma cell clone who caused all the problems  Those are the guys who clump up and form the amyloids that clog things up...and, even on their own before they clump, they're toxic enough to cause damage from the oligmers.  Fun stuff, eh.

The test this week will be the first real test of how my bone marrow is working since the transplant.  Last September, I started the oral chemo, Revlimid, to "clean up anything that was left after the transplant", according to Dr. E.  It worked so well that the bad free light chains, the kappas, just showed up in April as "< 0.33", the lower end of normal.

And, just to be sure, I did a 3-sigma control chart based on all my normal values and have this.  Looks like the system has been behaving OK up to this point.

This week will be the first time to check and see if the free light chain process can be in control without any pharmaceutical intervention.  The magic number there is less than 1.94 mg/dl but I'm OK as long as it's still within the control limits...one point does not a trend make.  (Yeah, I can say that now....hopefully I'll have the strength of spirit to be OK if it is above normal.)

So, there's my Gist Week.  I'll get to the other gist in a later post.  As I said last summer, I feel like I can live more boldly, and maybe more honestly now.  I've got a few things I'm struggling with and I need to come clean.

But as long as the gists above say everything is ok, I can handle the other one.