Good News--Data Geek Style

Today was such an overall great day....good news at the gist (my term for any of my doctors...today was oncologist) to start the day, saw a fellow Amyloidosis patient who's getting his transplant at The James right now and went to a little get together at the Multiple Myeloma research lab at OSU to see the progress they're making in the fight against MM....which often leads to treatments for AL Amyloidosis.  I saw a poster about a model that calculates the optimal dose of the chemo drug used before the stem cell transplant and the work was funded by a Pelotonia idea grant.  I also learned about work they're doing to reprogram patient's immune systems to attack myeloma cells.  Oh, and I found out that my older daughter is going to Bonnaroo with us in June to enjoy 3 days of awesome music in Tennessee.  How cool is that???

I was mistaken on the change to the follow-up schedule, though...I only move to 4 month follow ups from 3.  Not as long as I'd hoped but better than no change.  I can reduce my number of visits by one next year and if things still look good in a year, the follow-up schedule goes to every 6 months.  I am holding you to this Yvonne Efebera!!

So what does good news look like to a data geek.  Exhibit A, the statistical process control chart for my kappa free light chains (FLCs).  Those are the bad substances my plasma cells over produce that clump up to create amyloids.  As long as my value is below the UCL (upper control limit) my system is operating in control.

Exhibit A

Exhibit B is a chart I created to put all my free light chain values on the same scale.  The key measures are kappa FLCs, lambda FLCs and the ratio between the two.   But they all have different normal values so I calculated the mean of the normal value for each and plotted the percent variance from the normal mean for each value.  If it hits 100, it's right in the middle of normal.

Exhibit B

You can see the bad guy in red starting to trend up but, as shown in the SPC chart, it's well within normal limits.

Exhibit C is the same variance from normal mean chart but for my key liver values.  Those key measures are alkaline phosphatase (the main one), ALT and AST.  ALT and AST will vary more at different points in time depending on if I've had alcohol, the quality of my diet or other environmental factors.  This one looks pretty good, too....except for the spike in July (after vacation) and January (after vacation.)  Ooops.

Exhibit C

Exhibit D and E show the recovery of my kidneys.  Because the amyloids pry open the filters in your kidneys, a lot of protein that would normally stay in the blood leaks into your urine.  To see how much protein you're losing, you have to collect all your urine for 24 hours and they measure the amount of protein.  (I'll save the stories of how to get creative in collecting urine for 24 hours when you're as active as I am.  Hats are for amateurs, amiright, Kim??) The first chart is just a line chart of protein amount in the  24 hours of urine. The red bar in the second chart shows how much protein was in my urine when diagnosed.  The green bars show how much the protein volume dropped in each test.

Exhibit D

Exhibit E

The only not so great news is that my platelets still haven't recovered from the chemo, transplant and revlimid.  It's not the worst it's been but it's just not getting traction on recovering yet.  See Exhibit F.

Exhibit F

My IGG (Immunoglobulin G) levels haven't recovered, either and those are key to the secondary immune response, ie your immune system's response to stuff it's seen before.  Normal is 600-1714 mg/dL and mine has never gotten much above 500.  But it's been as low as 252 so it's SLOWLY heading in the right direction.

So this, boys and girls, is what good news looks like to a data geek.

Now, if I could just get that instance of Teradata and Tableau installed at home it would make this sooooo much quicker......