Seeing the water

Lately, I've really been spending time soaking (ha, you'll catch the pun later) in the commencement speech by author David Foster Wallace entitled "This is water."  I don't recall how I first came across this speech, but I've read it a few times since my diagnosis.  It was given in 2005 at, coincidentally enough, Kenyon College...which is also the location for the 100-mile finish for Pelotonia.  This video adaptation is an excerpt that catches the gist of the message...but I highly recommend reading the entire piece.

https://www.youtube.com/watch?v=8CrOL-ydFMI

He starts off with this story--

There are these two young fish swimming along and they happen to meet an older fish swimming the other way, who nods at them and says "Morning, boys. How's the water?" And the two young fish swim on for a bit, and then eventually one of them looks over at the other and goes "What the hell is water?"

He goes on to talk about how our default setting is self-centeredness....not in a preachy, negative way but in a "there's no other way for us to experience our reality than from our own perspective" way...with ourselves in the center.  And it's easy to get frustrated with the mundane boring parts of life like commuting home or going to the store...but we can make a choice as to how we see those things.

If you're automatically sure that you know what reality is, and you are operating on your default setting, then you, like me, probably won't consider possibilities that aren't annoying and miserable. But if you really learn how to pay attention, then you will know there are other options. It will actually be within your power to experience a crowded, hot, slow, consumer-hell type situation as not only meaningful, but sacred, on fire with the same force that made the stars: love, fellowship, the mystical oneness of all things deep down. Not that that mystical stuff is necessarily true. The only thing that's capital-T True is that you get to decide how you're gonna try to see it. This, I submit, is the freedom of a real education, of learning how to be well-adjusted. You get to consciously decide what has meaning and what doesn't.

He concludes the speech with this

I know that this stuff probably doesn't sound fun and breezy or grandly inspirational the way a commencement speech is supposed to sound. What it is, as far as I can see, is the capital-T Truth, with a whole lot of rhetorical niceties stripped away. You are, of course, free to think of it whatever you wish. But please don't just dismiss it as just some fingerwagging Dr. Laura sermon. None of this stuff is really about morality or religion or dogma or big fancy questions of life after death. The capital-T Truth is about life BEFORE death. It is about the real value of a real education, which has almost nothing to do with knowledge, and everything to do with simple awareness; awareness of what is so real and essential, so hidden in plain sight all around us, all the time, that we have to keep reminding ourselves over and over: "This is water." "This is water."

I really believe that one thing my diagnosis and illness has taught me is to really see the water all around me.  So many things that I might have found frustrating in the past are now miraculous--lines at the grocery store, a traffic jam, something forgotten by my absent-minded husband (ok that one still gets me but not as much as before I got sick.)  I think to myself, "Yeah, this might be irritating but you're not in the hospital, you're free to do pretty much whatever you might want and this crazy disease is under control.  What do I have to be upset about?"

Tonight, as I enjoy my normal life....as I think about the email from my oncologist over the weekend summarizing my progress that says CR (complete response/remission--the best outcome) in all areas (hematology, kidney, liver/GI) and I move further and further from the dark, scary days of diagnosis and treatment, I pray God will continue to bless me with the ability to "see the water."

Amen.

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......

Gist Day--Cycle 9

Well, tomorrow is Gist Day...not a week this time since I only see my oncologist.  While you might think these appointments become a non-event after a while, that hasn't happened for me yet.  Yes, the anxiety preceding the appointment lessens over time but it's still a reminder of the enemy lurking within my body.

Tomorrow's appointment is a big one because it's 2 years after my transplant and if my numbers look good..well, technically there's really one main number I care about--kappa free light chains to be exact..then I can move to 6 month appointments from the current 3 month schedule.  Having half the appointments to be anxious about would be a welcome change.  As you know, I consider these appointments my "contract extensions."  Previously, when I used that term, my friend Todd recommended that I negotiate a longer contract.  Tomorrow, I get a shot at doubling the length of my contract.

So, as I enter KATE (Kat after transplant era) cycle 9 (number of oncology appointments since my transplant), I'm hopeful for continued improvement but trust God's plan regardless of what happens.

Here's my song for the day--

"I wanna set fear on fire, and give dreaming a fair shot 

And never give up whether anybody cares or not"

https://youtu.be/WaXXR9kU5K0

My Second Birthday

Yesterday was my 2nd Stem Cell birthday. Thought I'd share some glimpses of my day. My daughter gave me a "You're 2" birthday card, I went on a 30 mile bike ride with my husband and my oncologist's nurse practitioner (who I call my 3rd daughter), I went to the 2 games my daughter's lacrosse team played in a tournament and then I went to a fund raiser for Lymphoma research at The James, our local cancer hospital. Sure beats being in the hospital. If you're in those early phases of diagnosis and treatment and wondering what life can be like on the other side, see below.  Keep the faith!

Remembering the tough times

Tomorrow marks the second anniversary of my admission to The James Cancer Center for my stem cell transplant...followed by my second stem cell birthday on Saturday.  Those of you who followed my blog last year know that this time of year was filled with remembrances of the darkest and bleakest days of my life.

A few weeks ago, I shared a post from 2 years ago asking for prayers due to the pain in my GI tract.  A good friend, whom I consider a spiritual mentor, commented on the post asking me to stop, saying it's over and that I should "keep gratitude. Embrace hope now."  Whenever a trusted friend advises me to change my behavior, I like to stop and reflect on what's causing the behavior and consider the recommended change.

The anniversaries of my time in the hospital will fall near Easter most years, as it did when I was in the hospital in 2013 and this year.  It's an interesting parallel and one I've pondered before in "Stem Cells for Easter".  I was kicking around my friend's admonition and thinking about Holy Week, pondering the somberness of Good Friday against the joyousness of Easter.

When there's joy in the outcome, what is the role of remembering pain and suffering that was on the road to the triumph?  I wish I knew.  I just know for me, when I think of the suffering, it brings my gratitude from lurking in the back of my mind to the forefront of my consciousness.  And it does it without undermining my hope.  I don't look back at the tough times and have fear they may come back in the future.  I look back to remind myself of how wondrous is the joy and how precious is the life I have now.

Exaggerated joy and a sincere appreciation for life..if remembering the tough times gives me that, I think I'll keep doing it.