Day 3 Saturday 3/28 "Third Infusion Day (High Dose Steroids)"

We're now into the second of six treatment cycles.  Just finished the only actual treatment in this cycle (everything else through 4/16 is pretty much blood tests).

On 4/23 we begin a three-day treatment (Cycle 3) that will have Becky and I staying at an Extended Stay hotel (we've been doing Super 8 but decided to upgrade a bit and get a bit more business-friendly amenities since we both need to work as much as possible, it also has a kitchen so we'll save some in eating out).

The last three days were, thankfully, uneventful side effect-wise, which is always nice.

The numbers on the blood tests look good (most are within a normal range, which is what we were looking for, though not necessarily this soon).  If I'm remembering correctly from my research, earlier improvement in the treatment may portend a deeper remission so that I may have hope for a longer remission before any further treatment is required following this trial.

Anyway, the report for now is eminently positive and I'm getting quite a bit done in terms of addressing the strategic issues Mountain Counseling is facing so I'm feeling less stress around that.

Day One Cycle Two "Nothing Remarkable, but Trial is Progressing Well"

For those needing a review:
- Michael's involved in a clinical trial (read 'experiment') to address a nasty leukemia called (Chronic Lymphocytic Leukemia)
- Trial takes about six months and is separated into five 'cycles'
- Yesterday (3/26/2015) was Cycle Two, Day 1

Okay, back to the present.  I noticed I messed up one of the prescriptions for a day but hopefully I didn't do any great damage (I think my compliance is about 95% but then 5% deviation, in a lot of things, can be a big deal--anniversary celebrations and managing explosives come to mind).

Yesterday was notable in that I began one of the treatment periods solo (no friends--at least no earthly ones--no wife, except mediated by technology).  Not what I would recommend but life needs to go on, even for Extraverts.  My wife, of course, as God's sense of humor would have it, is an extreme Introvert so I'm assuming it's a gift for her to have some 'alone time' (though she has her own Extravert demands to contend with, such as a group she leads each week).

Nothing remarkable in treatment yesterday--received an infusion of Gazyva (the 'inhibitor' that is addressing the core problem of Leukemia) and of a high dose of HDMP (steroids, okay, I'm getting tired of the professional athlete jokes so I'll just say that HDMP is supposed to synergistically intereact with Gazyva to maximize the treatment effects and minimize the nasty side effects).

'Nothing remarkable' is actually pretty remarkable.  I'm not missing out on being grateful for little if any side effects and my doctor informing me yesterday that we are on track to a solid remission (2+ years) from the CLL.  My concentration camp mentality leads me to believe mine will be much longer, but the bottom line is things are going amazing well on the treatment front.

Watch Out for Too Much Screen Activity **Michael on Steroids (literally)**

Since this weekend my clinical trial includes three high dose infusions of steriods (HDMP), I thought it would be a good time to share a clip from Daniel Siegel (read by an actor, I think, so the communication style is better than would normally be the case from a Ph.D.).

Bottom line:  Siegel gives an understandable summary of the brain science behind both resting your brain (getting plenty of sleep) and giving your break wakeful breaks from the photons being shot constantly at your brain as you take in media through various screens.

What's the connection with steriods?  My sleep this weekend will undoubtedly be greatly reduced so this will be quite the 'battlefield' for me.

Worst Day Yet

This is a fairly late post because the last treatment day (3/12) was fairly uneventful.  I've titled this post "Worst Day Yet" because the worst problem we encountered was that the Cancer Center was having a computer glitch that added a few hours to the schedule and made the day for Becky (who graciously accompanied me) and me 5:30 am to about 8:00 pm, including rush hour traffic.  I know, whine, whine, whine. 

But that's really the point--the worst problem yet was a computer glitch and some annoying traffic (which gave me an excuse to have a leisurely dinner and a lot of casual time with the woman I love).  So far (I "get" that there may be tougher times ahead) this has really been a 'cake walk'.  I'm responding positively to all treatment thus far with virtually no side effects.

At this rate, I'm expecting a call any day from Moores Cancer Center asking me to star in commercial with a client testimonial.

One thing I'm experiencing that I'm betting lots of 'patients' experience:  I'm getting a bit tired of the major topic of conversation being health issues.  Even in the midst of challenge I'm drawn toward a focus on externals (service to others, new projects, basically strategies for making the world a better place) rather than the tendency toward an inward focus that these health conversations breed.  Not to sound ungracious, but the next time you talk to me (or someone else going through a challenge) maybe a better question than "How's your health?" would be "What's your next step in personal or professional growth?  What are you working on? Why is this week going to matter?"


So, some lessons learned, thus far:

• Don't take days (or people) for granted.
• Reduce stress.
• Value relationships (they're pretty much all that matters in the final analysis).
• Plan more.  Worry less.
• No practice. No waiting.  No anger (none). No regrets.  Lots of grace. Game on.

My desktop background at present:

Clinical Trial Summary/Friday Treatment (3/6/15)

Friday was an easy day, made easier because I went out to San Diego with a friend who helped with the driving and was a good companion.  Doing things (especially potentially hard things) with people you care about is way better than the alternatives. Things have gone so well, though, that I'm planning to try the next few one-day treatments solo.  I'm thinking the most grueling part of that will be he rush hour San Diego drive.

The staff (and I) continue to be very pleased at the virtual lack of side effects I'm experiencing as I deal with the HDMP and the GA 101 infusions.

Here's a quick summary of the treatment I'm engaged in:

Cycle 1
2/26/15 HDMP Infusion, GA101 Infusion
2/27/15 HDMP Infusion, GA 101 Infusion
2/28/15 HDMP Infusion
3/6 GA 101 Infusion
3/12 GA 101 Infusion

Cycle 2
3/26/15 HDMP Infusion, GA101 Infusion
3/27/15 HDMP Infusion, GA 101 Infusion
3/28/15 HDMP Infusion

 Cycle 3
4/23 HDMP Infusion, GA101 Infusion
4/24 HDMP Infusion
4/25 HDMP Infusion

Cycle 4
5/21 HDMP Infusion, GA101 Infusion
5/22 HDMP Infusion
5/23 HDMP Infusion

Cycle 5
6/18 GA101 Infusion

Cycle 6
7/16 GA101 Infusion


GA101 = Gazyva/Obinituzimab
HDMP = High Dose Methylpredisone


Bottom line:  mega steroids, major doses of Obinituzimab, all designed to create a lasting remission in CLL.  Everything going according to plan so far.

Been thinking a lot about gratitude of late--more difficult at present because I'm going through some significant business difficulties.  I'm also very aware that this stress is not particularly good for the CLL prognosis.  Could be overwhelming to one not steeped in my own brand of Christian 'tragic' optimism.  I still remember in graduate school working with what we called Christian existentialism--basically the Kirkegaardian leap of faith (trusting the one in charge). 

My Stages on the Way to Freedom

Here's a poem by Dietrich Bonhoeffer which (see highlights) feels apropos of my current experience:

Stages on the Way to Freedom

Dietrich Bonhoeffer

Self-Discipline

If you set out to seek freedom, you must learn before all things

Mastery over sense and soul, lest your wayward desirings,

Lest your undisciplined members lead you now this way, now that way.

Chaste be your mind and your body, and subject to you and obedient,

Serving solely to seek their appointed goal and objective.

None learns the secret of freedom save only by way of control

Action

Do and dare what is right, no swayed by the whim of the moment.

Bravely take hold of the real, not dallying now with what might be.

Not in the flight of ideas but only in action in freedom.

Make up your mind and come out into the tempest of living.

God’s command is enough and your faith in him to sustain you.

Then at last freedom will welcome your spirit amid great rejoicing.

Suffering

See what a transformation! These hands so active and powerful

Now are tied, and alone and fainting, you see where your work ends.

Yet you are confident still, and gladly commit what is rightful

Into a stronger hand, and say that you are contented.

You were free for a moment of bliss, then you yielded your freedom

Into the hand of God, that he might perfect it in glory.

Death

Come now, highest of feasts on the way to freedom eternal,

Death, strike off the fetters, break down the walls that oppress us,

Our bedazzled soul and our ephemeral body,

That we may see at last the sight which here was not vouchsafed us.

Freedom, we sought you long in discipline, action, suffering.

Now as we die we see you and know you at last, face to face. 

I discovered this poem in college and it has provided a great deal of inspiration and encouragement since. (Okay, so his suffering was in prisons and concentration camps by a brutal Nazi regime but, suffering is suffering and we all have our own need to "yield our freedom into a stronger hand".)  I hope it speaks to something in your experience as well.