Treatment Day Three/Saturday

Easy day. Just one infusion of the Gazyva (GA-101), also known as Obinutuzumab or Gazyva.  Gazyva is actually the star of the clinical trial (not that a high dose of steroids is not interesting or fun, take it from someone who's slept an average of three hours the past two nights, I know).

Gazyva is what's known as a monoclonal antibody that is targeted to kill malignant B cells (which is pretty much the whole problem of CLL.  For those with scientific minds, the description is,

a third generation type II anti-CD20 antibody, selectivity binds to the extracellular domain of the human CD20 antigen on malignant human B cells. The Fc region carbohydrates of the antibody, enriched in bisected non-fucosylated glycosylation variants, contribute to its higher binding affinity for human FcgammaRIII receptors compared to non-glycoengineered antibodies, resulting in enhanced antibody-dependent cellular cytotoxicity (ADCC) and caspase-independent apoptosis. In addition, modification of elbow hinge sequences within the antibody variable framework regions may account for the strong apoptosis-inducing activity of R7159 upon binding to CD20 on target cells. (NCI Thesaurus)"

I've had no reactions so far and everything else in the six-month trial is pretty much repeating what we've done is the past three days so my hope (and relatively firm expectation) is that this will not be much more annoying than a few trips to San Diego.

Quite a few responses to the newly public blog so far.  Lots of encouragement, lots of people praying (no small thing that).  Some people being able apparently to benefit from the thinking here even if they aren't dealing directly with cancer (though some are dealing with cancer effects in its impacts on others)

Random Thoughts on Day Two

Random responses to nurses throughout Day Two:

'Feeling great' [some mild euphoria from steroids may be involved here]
'Some restless, especially in legs' [needed to walk that off several times throughout the day]

Focused my attention throughout most of the day on getting administrative chores done that related to my non-profit CEO job.  I notice many others going through similar experiences at the infusion center used other distractions:  novels, sleeping, incessantly listening to Fox News [not recommended but everyone has their point of view].

Random thoughts on dealing with easy, good days:

Where were the side effects?  One nurse (one of the more experienced ones in similar clinical trials to what I'm doing) commented to the effect, "I can't remember more than one or two patients who had as few side effects as you've had.'  My internal response is profound gratitude but it's also part of how I happen to be wired in terms of my personality that I expect good results.  I describe this to my close friends as 'my concentration camp' response (See 'Concentration Camp' post).

The Parking Lot
Left the infusion center around 6:30 pm only to find a lady who had just tripped and apparently injured her ankle.  Helped her up and she seemed fine (she was pretty much monolingual so I was guessing) but needed a jump which we could help with only peripherally (good reminder to do a better job with emergency supplies in my trunk).

Bright day, bright thoughts, but it's easy to have bright thoughts in the midst of grace and clerical errors.  How will I do on bad days? St. Paul has that great statement about doing well in abundance and in need.  I'm much better with the abundance, which is where I currently find myself.

Faith Perspective Day Two

The gracious act of faith from a loving Father [with apologies to those from a different faith perspective] is a component of how one experiences days like today.  It will spring primarily from their very personal choices about their search for meaning. Some of those are faith commitments--I'm working from a faith that believes the Christian basics:

• we're majorly screwed up deep in our deepest being
• we have the opportunity to accept, without any reliance on our own effort the completed work of a gracious dieing, resurrected God, whose death and resurrection invites us to 
• complete (eventually) transformation into a new version of the resurrected Jesus, becoming followers of him yet also completed versions of ourselves impossible apart from him.

To some that will be the religious part, the crutch.  No defensiveness here (I'm a psychotherapist, we're not much given to defensiveness). I have total respect for the fact that this God (about whom I have some very specific and very passionately-held beliefs) has given each of us final choice(s) and amazing respect for our individual choices (and their consequences).

Again, apologies to those of different faiths but I am enamored of the belief Luther sometimes called, far more eloquently than my paraphrase, 'only grace, only the Bible, only Jesus' in response to the non inconsiderable weirdnesses of the religious systems of his time.

Further Resource to Check out:
Francis Chan on choosing or not choosing faith.  I'm a big fan of Chan--he's a great communicator and a committed follower of Jesus, not a common combination in my experience

The Audience (Part II)

Beginning of Day Three (2:21 am) Not sleeping due to the steriods?  Maybe but I'm often given to midnight and early morning writing in my normal existence so let's just say this is more of who I already was.

Anyway, getting tired of the privacy issues so I'm going public with the blog for whoever has interest.

The right to share one's personal musings (see disclaimer in separate post) is a First Amendment right.  I'm not always a great patriot but I really think Adams and Jefferson got that part really right. 

Day Two "The Concentration Camp Parable"

If I was thrown into a concentration camp because, say, for my faith or ethnicity, I don't know that I would be wise enough to take the high road (a la  Victor Frankl at Auschwitz who used the experience to write about human search for meaning in existence) but I do know that I'm wired to believe, both rooted in my personality and in my faith, that I'm likely going to be among those who 'get out'.  I will be released due to a clerical error [grace, not works, to put it in terms of my faith in Jesus].

Day Two of treatment was definitely that for me.  An easy day to write about grace and transformation. But I had read the warnings on the medications--nasty possibilities, some of which I may well be still in for and, honestly, some of which my fellow travelers were experiencing the very day I was being excused from most of the real suffering.

Easy for me to be grateful now.  Victor Frankl wrote some of his best stuff on scraps of paper (apparently toilet paper and the spaces of smuggled newspapers were favorite mediums).  I write on a Mac Air notebook computer with lightning speed and amazing access to much of the best that been written throughout human history.  More resources are available to me now than were available to kings and queens of previous generations.  You'd think I could do better than this.  Really.

But I'm grateful for grace because part of grace is that even my not doing better is covered in grace my response to days like today is covered by the grace of the Cross (try to block this out if you're of a different faith persuasion; followers of Christ sometimes lapse into jargon).  Way different from Frankyl here. I get that that (though he had his own jargon).  But my training was boldly eclectic (take what you can from the best of those who've went before).

So my response is framed in terms of Frankl:

“LET US FIRST ASK OURSELVES WHAT SHOULD BE understood by “a tragic optimism.” In brief it means that one is, and remains, optimistic in spite of the “tragic triad,” as it is called in logotherapy, a triad which consists of those aspects of human existence which may be circumscribed by: (1) pain; (2) guilt; and (3) death. This chapter, in fact, raises the question, How is it possible to say yes to life in spite of all that? How, to pose the question differently, can life retain its potential meaning in spite of its tragic aspects? After all, “saying yes to life in spite of everything,” to use the phrase in which the title of a German book of mine is couched, presupposes that life is potentially meaningful under any conditions, even those which are most miserable. And this in turn presupposes the human capacity to creatively turn life’s negative aspects into something positive or constructive. In other words, what matters is to make the best of any given situation. “The best,” however, is that which in Latin is called optimum—hence the reason I speak of a tragic optimism, that is, an optimism in the face of tragedy[…]”

Excerpt From: Viktor E. Frankl, Harold S. Kushner & William J. Winslade. “Man's Search for Meaning.” iBooks. https://itun.es/us/rT4xC.l

An easy (not terribly tragic) optimism for me today because I 'get' that I benefit from a long list of privileges including:

• deep relational connections with a gracious Father God and a few of his followers
• meaning in my work that often witnesses life changes and growth into grace (though not always strictly spiritual)
• working with colleagues and interns in many ways superior to me in some of their emerging giftedness yet willing to learn and receive guidance from me as well
• access to technological and intellectual resources (which can be turned inward and backward in mindless internet surfing, pornography, or mindless television viewing) but can also be a way for us to 'stand on the shoulders' on the wisest of those who went before and participate in my own search for meaning
• and a Day Two of CLL treatment that has been virtually free of significant side effects

The Disclaimer (Read this First)

Since the private blog this began as is now public, I need to provide the legal and ethical disclaimer.  Here goes:

This blog is not to be used as a substitute for psychotherapy--better to get your own therapist for that.

This blog is (obviously) not to be used as a substitute for medical advice (or even very good medical reflections) see your own doctor(s) for that.  And don't forget about Brian Kaufman's blog for solid  medical musings (from a physician) on cancer, especially CLL.

I happen to be a therapist in one of my jobs.  But in this blog I'm a cancer (Chronic Lymphocytic Leukemia (CLL)) patient who happens to have a job, several jobs really, as a psychotherapist, a  coach (think 'Executive, Life and Leadership' rather than soccer or tennis) and a teacher and a servant-leader of other human services professionals (some also therapists or emerging therapists, some who are amazing for other reasons) in a not-for-profit organization in the San Bernardino mountains.

Since this is now personal (and public) I get to show you my wife and therapy dog, both of whom play important, though very different, supporting roles in my CLL experience, in my professional life and my life generally. Luke is a certified professional therapy dog (for clients) but he hangs out with me most of time non-professionally as well (sometimes he gets his roles confused).  I haven't figured out (yet) how to get him involved with my clinical trial (but don't put it past me).

Becky

Luke

Treatment Day Two

1:41 pm
I remember going through Chemo with Becky at Kaiser and the comparison with the UC San Diego is very favorable.  They actually have a Physician's Assistant here full-time in addition to specialists being available on call.

No need for any of this today on my account, though. A bit of restless (due to the Benedryl and/or high dose steroids) is about the most annoying thing I've experienced. We have a private room so Becky is able to work much easier than yesterday and ditto for me.

I almost think the overall impact of productivity is good as far as getting me out of the office a bit as well.

We were concerned about driving the Prius home tomorrow (probably around 12 or 1) in the snow but it looks like snow is being postponed on our account.

Blood draw labs look good--exactly what is supposed to happen is taking place right on schedule.

Thanks

This is worth a separate post, even with the risk of leaving out some key player who I really wanted to thank.

One comment I often make to just about every client I have is that, if one looks at my goal list (which is not inconsiderable and may be a bit on the grandiose side), one discovers very quickly that I don't have anything on that list that is going to be accomplished without the right players providing the right support.  Since I now need to add, "Complete CLL treatment successfully" to my goal list, I would like to thank some of those 'right players'.

• Paul (friend) who has already committed to giving up a day accompanying me to one of my one-day treatments
• Becky (wife) who is stuck with me by virtue of her vows, but is totally engaged in the whirlwind of this treatment adventure and brings her own brand of intensity and focus to the team
• Dr. Choi (the physician who is following my case in the clinical trial)
• Dr. Kipps (the physician who birthed the idea for for the trial)
• Dr. Rosen (my CLL specialist at City of Hope who consulted with me in the process of arriving at the clinical trial decision)
• Maria (the nurse for Day One who answered about four trillion questions with the patience of Job and the sophistication of a nurse who takes her role very seriously and with a great deal of passion)
• Natalie (clinical research coordinator who seems to do pretty much everything non-medical in conducting the clinical trial; I don't know how much 'organizational' authority she has in this system, but she has huge amounts of 'moral' authority in my book).
• Jesus (skip this if you have religious issues) who provides actual peace and joy in the midst of an experience that could be anything but peaceful or joyful. A comment I often make to clients is that we really don't get to see "who we are" except in the crucible of challenge. As Dallas Willard has taught me through his books, Jesus is not so much interested in changing our behavior or feelings as he is in changing us into the sort of people who naturally have the right behavior and feelings.  And we don't really get to see what sort of people we are apart from challenges like CLL diagnoses.
• the Mountain Counseling & Training (a not-for-profit I lead) team who expertly fills in the gaps I leave when I take clinical trial 'vacations' to San Diego, and especially
• to Terri who fills in for my clinical roles when I'm away
• to Sarah who makes referrals flow in so we can pay the bills
• to Juliette who turns the referrals into actual services by assigning them to clinicians and coaches
• to Kelli who provides the personal touch in our phone contacts with clients and stakeholders
• to the pre-licensed therapists and credentialed coaches who do the real 'front line' work
• to Denise who leads the academic coaches and the Affinities Division generally

One more thing about thankfulness (this could be the steroids talking again).  Check out Shawn Achor's TED talk on happiness (toward the end) for some amazing practical tips (and scientific justification) for expressing gratitude. If you happen to be doing the 'follow of Christ' thing, you might want to notice that there are over 138 direct Biblical references to thanking or being thankful. 

The Audience

At this point the audience for this is a fairly small group of friends/family.  So if you have ideas as to who may benefit, pass their emails on to me and I'll see if I can put them on the invitation list.

Also, feel free to comment since it's moderated and if there's a problem with confidentiality, I'll fix it.

When I think about specific audience members in mind I think about:

Rudy who has his own experience with cancer.
Paul F who has lots of experience with alternative medicine.
Pastors of local churches who are undoubtedly dealing with cancer-related issues on a weekly basis
Some of my own MCT colleagues
Family

The Why's

I thought quite a lot about whether this blog even deserves to be written.  Here are the Why's (I'll let you figure out the Narcissism).

Why
It's 2:49 a.m.; I'm in a Super 8 hotel room.  My wife is asleep (I'm pretty sure, but you never can  tell for a certainty).  My dog is 100+ miles away (so I can't just pet Luke until the blogging desire goes away).  So why not?

But,  seriously.  Writing makes one a better writer and reflecting on life can make a person a better person.  So I can get a "win" out of this whether there's a small audience or a large one. More about the audience in a separate post.

I currently have a high dose of Methylpredisone (steriods) coursing through my veins and my nurse virtually promised me a sleepless night. Might as well make good use of the extra energy, drug-fueled as it is.  I should have been a professional athlete.  But I digress.  But who wouldn't digress under these conditions, so give me a [proverbial] break.

Also, I've got this cancer (Chronic Lymphocytic Leukemia, 'CLL' to its friends and I use that word loosely) thing.  Which is a bit of a gift in that I have much more of a sense then most that I'm mortal, temporary, not very important, and very important. Becky (my wife, the probably sleeping one) put a quote on our refrigerator: : 'To the world you may be one person but to one person you may be the world.'

Another of my "why's":  Brian Kaufman is a physician in Newport Beach who also has CLL.  Part of his response to this was to write a blog and then form a non-profit corporation in service of those similarly struggling.  Brian is clearly making a great contribution with the gifts he has and I thought perhaps I should work on the "micro" level while he works on the "macro" level.  If you want to read some really good stuff on CLL from a medical (though personal) perspective, check out his blog. If your goal is medical depth, read his stuff, it's pretty damn good.  As for me, I'm a psychotherapist and a coach.  So you get what you get.

Another reason:  Maybe this will be relevant to some struggle (hopefully not Cancer) someone else is having. I often say to graduate counseling students that, though they likely don't share some of the problems of their clients (e.g. addiction, homeless, etc.) they do share the common human pain.  I haven't met anyone yet who's totally escaped that and that is a potential rapport-building connection. There's more in that than you might think (and, a word of caution to budding therapists:  that is not carte blanche to engage in narcissistic self-disclosure).

Clinical Trials or Conventional Treatments

My adventures in CLL have taken me to a few workshops, a consult with a CLL specialist (Dr. Rosen at City of Hope) and finally to participation in a clinical trial at UC San Diego's Moores Cancer Center.

Bottom line is that what is typically recommended is the conventional treatment (more aggressive and toxic Chemotherapy) --FCR or BR.  For me, this would likely have the result of a longer remission.  Or I could go with a clinical trial which may have a shorter remission but has less long term side effects.  One can also get on one of many clinical trials which can go in many directions. Since everyone seems to agree that three to five years from now medications will be even better than they are now, I went with the clinical trial approach which involves primarily Gazyva and Methylpredisone.

In Meyers-Briggs Type Indicator parlance, I'm an ENFP so, true to form, I carefully examined all the options and then chose the one that felt right.

So I'm beginning a clinical trial at UC San Diego under the guidance of Dr. Choi, Dr. Kipps and more supporting players that I can count (though I'm getting to know some of them much better).

The trial began formally yesterday.

Treatment Day One

First, apologies to the detail-oriented among you.  I tend not to care about details (except as they point one to the BIG picture).  I know that drives some of you bonkers.  Commiserate with my wife (Becky) if you'd like (she's queen of details and it has saved my vision-loving butt more times than I could count).  But one is who one is.  And I am the writer of this blog so you get what you get.
So don't expect tons of details.  I don't speak that language, certainly not very comfortably and certainly not for long periods.  As I used to say in college, 'My external world is a mere foil for my internal world'.

But I'll throw in a few if I can use them to make a point.  On the other hand don't forget that one of the components of this trial is shooting me up with a high dose of steroids so who knows exactly how this will turn out.  But I digress.

Here's the Day One Summary (with more detail than usual because of all that 'protesting too much' above).

We drove to San Diego the night before to be sure we could be on time Thursday a.m.  We checked into a Super 8 motel (not my preferred hotel at the beach would have come at a higher premium than was reasonable at present).

We arrived at 7:40 a.m. at the Moores Cancer Center the next morning but then went to the wrong waiting room (that was me managing the details) and waited 20 minutes, which was interesting because we hung out with a few people dealing with highly significant life threatening events.  One gets that a lot in a cancer center.  One also tends to be much less glib with all the wheelchairs and depression hanging about.

Anyway, the first of what must have been at least 50 vital sign checks occurred and the adventure began.

There were medications and pre-medications. And schedules to negotiate.  I ignored most of it since the staff seemed to know what they were doing and I was behind on my administrative chores (which one can manage remarkably well from a cancer center).

Some of the high points were:

• The clinical trial nurse prepared me for 'virtually inevitable' side effects of the main drug (Obinutuzimab, 'Gazyva' to its friends, but I'm not sure medications have friends) and other drugs.  None of which materialized to any great degree, not even my becoming terribly manic as would seem to be expected from the steroids (okay, so it's now 4:01 a.m. right after Day One, but that really isn't all that unusual for me, so lay off the manic diagnosis).  Basically, relative to side effects Day One (there are two more this week), it was a walk in the proverbial park
• God responding to prayers of good friends and family, having Becky there to attend to details, and the distraction of lots of administrative professional chores seem to help
• I've taken more medications in the past 5 days than I have in the preceding 15 years

Finished the day with smoothie from Robek's and yogurt at Yogurtland (the sort of thing one does in San Diego). Becky did a more normal dinner from Chipotle (note to Becky fans:  she is not a fan of spicy foods).

Prelude--The Beginning of My CLL Journey

Here's an email I sent to friends back ground back in late October of 2013:
*****************
From: Michael Beavers <mikebeaverslmft@me.com>
To: ...
Sent: Friday, October 25, 2013 5:26 AM
Subject: Michael's Health

Hi all,
Here's an update about the health issue (Chronic Lymphocytic Leukemia (CLL)) that you may have been praying (and/or wondering) about.

This has been a long diagnostic road but here are some particulars:

1. I have received a definite diagnosis of CLL.
2. It is described as Stage Two, in an "indolent" phase,  "Indolent" being a good thing since it's the opposite of aggressive and one likes any sort of cancer to be as indolent as possible. And "indolent" is also nothing like "terminal" which is pretty much what you want to avoid in matters like this.
3. There are no symptoms (except enlarged lymph nodes, which is what merited "Stage Two").
4. I will be monitored via blood tests every three months for at least the next couple of years.
5. Should further symptoms develop, it's possible I'll be in for an aggressive round of chemotherapy (which has a high probability of a good outcome)
6. It is also possible that things will worsen considerably and it will become terminal (which could take place in the next six months or when I'm 92), which makes long term planning rather more tentative.
7. Bottom line:  I have a much greater appreciation of whatever days I am granted and hope to carry out a life mission that (in no particular order)

• creates Christian community (the "CCX"  or "Christian Community Experiments" cell group project)
• provides strategic service to my community through avenues such as Rotary international
• develops a healthy non-profit organization focused on training and empowering outstanding clinicians, providing strengths-based services, and supporting the abolition cause
• provides love and support to an amazing wife (who is dealing with a few existential issues of her own)
• carries out a spiritual life with consistent integrity and connects deeply with like-minded people.
• Hopefully, "Rumors of my death have been greatly exaggerated".  Don't feel too sorry for me; the reality is I could easily die of causes having nothing to do with CLL (like old age or careless driving or inordinate and adolescent risk-taking).  There's actually a gift in this process in that I likely have greater awareness of the preciousness of each day (some would think that a cliche, not having the benefit of a chronic potentially life-shortening diagnosis.  I, however, am beginning to "get" that the brevity and preciousness are actually the reality).

Something of the following may find its way into my next life mission revision:

I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit.  -Dawna Markova

This is the true joy in life, the being used for a purpose recognized by yourself as a mighty one; the being thoroughly worn out before you are thrown on the scrap heap; the being a force of Nature instead of a feverish selfish little clod of ailments and grievances complaining that the world will not devote itself to making you happy.  -George Bernard Shaw

Perhaps it is a bit ironic that this week I've been studying Philippians 1:21ff which hints that shorter lives can be better ones.

As to my mildly narcissistic sense of indispensableness to my lofty goals, a quote of which a friend reminded me last week, says it well, The graveyards are full of indispensable men.  So maybe I'm beginning to "get" that 'Man proposes, but God disposes', or as the Yiddish proverb has it, "Man plans, God laughs", God being quite the 'untame' (though eminently loving and majestic) 'lion'. God's purposes are not in doubt, nor is his kindness, as in allowing me some pretty awesome experiences alongside some pretty awesome people.

Michael Beavers
*********************
That was then, this is now.  And now (February, 2015) treatment begins . . .