Day -3 through -2

Chemotherapy taking place in earnest now with Day 0 being the long-awaited transplant day. The myriad players at COH  are carrying out their roles with excellence and we're heading toward transplant day with hope and a fairly positive attitude. Room service is excellent and one can get pretty much whatever one desires.  We're trying to lean a bit toward the Cinco de Mayo theme with a quesadilla.  Nausea quite the order of the day.

Becoming acclimated to how one gets 'extras' around here (e.g. workouts in the gym and unrestricted access to B complex vitamins) (which seems to be quite the contraband due to niceties in the pharmaceutical profession).

One plaque I saw recently symbolizes the reality of how things really work around here:

Importantly, we are approaching he actual transfusion date which moves irrevocably toward success and the patient (me) being relatively whole and ready to return to his regular life and, not least, Golden Retriever-and not-for-profit filled life,

So far, my time away has been characterized by the team at Mountain Counseling & Training, Inc.  ably conducting a Wellness Walk and my handyman team (headed by Paul (hauling guy) Shane (Handyman/coordinator guy) and wife (all around make it happen person) working on getting the house in tip top shape for my return.  We also have some cleaning people, Robert and Kimberly Moss, who are working on reducing household contaminants.  In addition we have Structural Termite and Pest Control working to eliminate pests of the microscopic (spiders/ants), submicroscopic and larger size (e.g. rats/mice).

Another bright spot is the Dean Koontz novel, "Watchers", focused on a genetically engineered Golden Retriever named Eisenstein.  Things going pretty well for them now except they are intermittently locked in mortal combat with a mafia hit man and a genetically engineered malevolent baboon, bent on mindless murder.  To say more would require a spoiler alert so I'll let you have your own Koontz/Golden Retriever adventures.  Finished the book this a.m. but you'll have to read it for the conclusion--suffice it to say that I agree with Koontz and his reviewers that it is his best work.  Not that I wasn't also powerfully impacted by "Fear Nothing", an earlier work which is also worth a read/listen.

Coaching Tips (This is the What I'm Learning From My Cancer Part)
Here are some materials I'm working through during my forced convalesence.

Coaching resources.  (This is the What You Might Learn From My Cancer Part)
I got to review a training that one of our consultants is going to be presenting to our team tomorrow and I thought a couple of his selected videos worth sharing:
First from Fred Rogers on the Importance of Trust and Investing in our Kiddos

And then there's the always worth sharing classic Ted talk from Brene Brown on the "The Power of Vulurnability. 

And second, on the lighter side, a bit of Star Wars wisdom, when facing a difficult challenge.

Enough for now--hopefully that the days here are only a few more.  I hope We are now in the home stretch as I'm looking forward to getting back to my normal life (and a pretty good life it is too).

Dr. Rosen just stopped by making it clear that he has a vested interest in a positive outcome.

Days "-8" and "-7": First Days In Hospital

First couple of days in the hospital. I've been learning how one designates days in the transplant process.  Yesterday was Day minus eight (-8).  So designated because Day Zero is next Wednesday which is what one affectionately refers to as "transplant day".  Day "-7" (today) inches ever closer to the transplant day.

The goal, in the words of one of the nurses, is to 'give you enough chemotherapy to kill you'.  But fortunately killing the patient is not actually the intent.  It's more about killing the patient's immune system and reducing all immune functions to basically nothing so that new cells can be introduced (Day 0).  Assuming all goes well, that infusion leads to a gradual rebuilding of immune function and one is discharged and sent home to lead a long and happy life.

Yesterday was generally uneventful, filled with driving, administrative tasks, labs, meeting with the attending physician, meeting with the transplant coordinator (who originally hales from Canada), and getting pep talks from the various nurses on Floor 6 of Helford Hospital.  Some "good cop" "bad cop" dynamics at play. Fortunately, nurses have way more "good cop" than "bad cop" going on. Overall, the experience seems to be: a bit of prison, a bit of luxury resort, a bit of monastery, and a bit of medical institutionalization, all with a lot of great people who seem to care a great deal about their patients and their hospital. Room service is quite the highlight.  These guys seem to think that food is a centerpiece of one's success around here.

All seems manageable thus far but the clear message from the nursing staff is, "Don't worry we haven't had a chance to really beat up your body yet", all said in a spirit of love and professionalism.  But one does take solace in the fact that COH has done thousands of these procedures and, by all accounts, is pretty good at it.

Serendipitous (and encouraging) event in the parking lot yesterday:  connected with Dr. Rosen (my main physician and the COH Cancer Director) who expressed interest in following me throughout the procedure (though the attending physician for the transplant is Dr. Herrera). Dt. Rosen is not only exactly who you would want in charge of your cancer care, he is also a great example of a leader profoundly impacting those he serves with his gifts and strengths,  I don't know if he's a practitioner of the Gallups strengths philosophy (as I am) but he absolutely is an example of someone playing to his strengths and bringing his best contribution daily to his myriad stakeholders (of whom I get to be one).

Coaching Tips (This is the What I'm Learning From My Cancer Part)
Two things:  Never alone. Never without a goal . Two things that seem painfully and abundantly obvious on Days -8 and -7:   This transplant thing (and life thing) only works with the right people and it only works with focus.

The Right People--MD's, the wife (never forget the wife), the PCA's (learned today that was Patient Care Assistant), nurses, case managers, housekeepers, recreational therapists, nutritionists and others are all critical parts of this effort and success of this is going to rely on my connecting well with them and benefitting from each of their roles.

Focus--I'm also thinking that generally maintaining focus on the goal(s) is going to matter a lot, I'm a 60-year-old man.  Assuming this goes well I could have ten years or more to serve kiddos (and our counseling team) at a non-profit in the San Bernardino mountains, engage with friends/wife/God/Golden Retriever, have a positive service impact on not-for-profits generally and other leaders in our community, and start a not-for-profit focused on Christian Community Group (CCX) experiments.  I'm thinking those are worth doing so figuring out how to navigate through this particular next few weeks is also worth doing.

Coaching resources.  (This is the What You Might Learn From My Cancer Part)
Before I left the office I presented a new policy to the team that included the following videos, both of which I see as great catalysts for personal and professional growth:
"The Call to Courage" by Brene Brown (on Netflix).  This is a condensed version of a presentation Dr. Brown gave in L.A. recently (which our clinical supervisor got to attend).  Lots here to propel individual growth and professional leadership.
"Great Leaders Do What Drug Addicts Do" by Michael Brody-Waite.  I discovered this in the midst of creating a Performance Improvement Plan policy and decided to use it as part of our strategy for encouraging staff to meet the organization's productivity standards.  Worth a listen/look even if all you get is the three principles that recovering addicts live by (and leaders should live by).

Michael's Not Dead/Current Treatment/Prognosis

I should be at least mildly embarrassed that it has been several years since my last post. This could lead the reader to surmise, since these are posts about reflecting on one's experience with cancer, the writer succumbed to the disease long ago.  Not so.

Actually my lack of writing is a combination of procrastination, boredom (check out reasons, pretty positive), and being distracted by a thriving not-for-profit--Mountain Counseling & Training, Inc.

Now things are heating up in the cancer war.  I've been under the care of the City of Hope team for several years now.  Treatment, including various clinical trials have seen a remission on the Chronic Lymphocytic Leukemia front and a transformation (not a good thing) to Hodgkins Lymphoma.  I have been treated for that as well during the past few months which has led to very encouraging lab tests, to such a degree that we're now looking at a stem cell transplant (which will occur in the next few weeks).  The end goal of the transplant is "cure" so we're thinking it's worth the short term annoyance.

Reasons for Boredom
I have a few positive reasons for boredom during the period since I last wrote in this blog:
1) I've been largely symptom-free.  Some of the clinical trials, for Chronic Lymphocytic Leukemia (CLL) or, later, Hodgins, have brought some minor side effects but nothing too dramatic or detrimental to my career and personal pursuits.
2) I've been under the care of a world-class team of medical professionals (headed by Dr. Steven T. Rosen) at City of Hope and they are pretty good at making a battle with a life threatening disease look relatively easy.
3) The support and encouragement I've received from my relationship with Jesus, spiritual community (Calvary Chapel Twin Peaks), my wife, and the staff at Mountain Counseling & Training, Inc. has been stellar. I also have some amazing friends. They generally provide the right mix of prayer, encouragement, and practical help such that this whole experience feels less a full-on trial than a minor annoyance.

The Next Adventure
As I write this (appropriately enough, on Easter), I am wafting my way to City of Hope to begin what's called the collection (or 'vampire') phase of the transplant.  Known as an autologous (using my own blood cells) stem cell transplant, the procedure involves collecting one's own stem cells from the blood, enduring some high dose chemotherapy, and then putting the healthy stem cells back at the appropriate time.  Dr. Alex Herrera heads the transplant team. The City of Hope team has been doing this procedure for over 40 years so I'm thinking they're getting pretty good by now.  I'm told the mortality rate (nice way of saying rate at which patients die) is around 1 in 100, which I'm thinking I could also get by taking a nasty fall in a bath tub.

Becky and I will be staying in "Village" housing on the City of Hope campus for the "collection" period and I plan to formally admit into the hospital next Monday when the real 'fun' begins.  The projection is for me to be in the hospital for 3-4 weeks and to then have three to six months of recovery time at home (main requirement is to largely keep away from germs and the like).  I'm planning to work remotely through most of it.

What I'm Currently Reading
Not very coach-like not to mention at least a few resources that help me think about health issues from a constructive vantage point.  Here are a few of my "go to" leadership and life resources:
Dare to Lead by Brene Brown.  Listen to her (now) famous Ted talk, "The Power of Vulnerability" and see if you get 'hooked'. I find her research and life recommendations quite compelling and they end up being a fairly significant part of my client work.
Watchers by Dean Koontz.  Koontz is worth a read, if for no other reason, because in real life he has a Golden Retriever given him by Canine Companions.  And I know of know other book that features a Golden Retriever with superpowers.
Principles by Ray Dalio.  Amazon best selling business book.  Recommended by one of the heroes in the philanthropic space, Bill Gates.
Daring Greatly by Brene Brown.  Worth reading for the "Daring Greatly" quote (from Roosevelt speech).

More Info on City of Hope Stem Cell Transplant Process
https://www.cityofhope.org/tests-and-treatments/bone-marrow-and-blood-stem-cell-transplants#overview

Screening, Tests, Informed Consent and an Story About Leadership

Last couple of days have seen lots of tests, the clinical trial informed consent, and a story about leadership.  

As you may remember I'm being treated at the City of Hope which houses one of the foremost investigators in the area of CLL research--Dr. Steve Rosen.  Here are a few of Dr. Rosen's titles:

• Irell & Manella Cancer Center Director’s Distinguished Chair
• Director, Beckman Research Institute of City of Hope
• Provost and Chief Scientific Officer
• Professor and Director, Comprehensive Cancer Center
• Professor, Department of Hematology & Hematopoietic Cell Transplantation

One would think that such a person would be disconnected emotionally and socially at best but one finds in experiencing him and talking with his staff (often the best test of one's leadership is the perception of one's subordinates) that Dr. Rosen actually maintains a striking humility, grace, and respect for others as he moves about his various professional orbits.  One physicians' assistant I spoke to made it clear that Dr. Rosen's respect for colleagues (even saying "thank you") was not the norm among physicians.

I've been teaching about leadership for several years now and one of the models of which I've been enamored is "Servant Leadership".  The following quotes summarize this theory of leadership.

“Good leaders must first become good servants.”
― Robert K. Greenleaf
"True leadership must be for the benefit of the followers, not to enrich the leader."
― John C. Maxwell
"Servant-leadership is more than a concept, it is a fact. Any great leader, by which I also mean an ethical leader of any group, will see herself or himself as a servant of that group and will act accordingly."
― M. Scott Peck
"A new moral principle is emerging which holds that the only authority deserving one's allegiance is that which is freely and knowingly granted by the led to the leader in response to, and in proportion to, the clearly evident servant stature of the leader. Those who choose to follow this principle will not casually accept the authority of existing institutions. Rather, they will freely respond only to individuals who are chosen as leaders because they are proven and trusted servants. To the extent that this principle prevails in the future, the only truly viable institutions will be those that are predominantly servant-led."  ― Robert K. Greenleaf

R. Greenleaf's work did much to solidify the Servant Leader theory in management leadership.  I remember writing in my Life Mission statement that one of my life aims was:  exercising leadership such that people are served, encouraged and developed into synergistic interdependence. I am about using power and authority with purity toward noble social and spiritual goals, striving to always be mindful of the overriding importance of right principles.

It's refreshing to see that others are striving toward this goal as well.  What if all the leadership authority we were given was used exclusively to serve, encourage and develop others?  Cudos to Dr. Rosen and others exemplifying Servant Leadership for showing us how it's done.

Looks like my next clinical trial will likely begin December 30. For those with an interest in the details:  A Randomized, Multicenter, Open-Label,Non-Inferiority, Phase 3 Study of ACP-196 Versus Ibrutinib in Previously Treated Subjects with High Risk Chronic Lymphocytic Leukemia.

The next event is being "randomized" which will tell me whether I'm in the AB-196 arm or the Ibrutinib arm.

 

It Looks Like Another Clinical Trial is in My Future

I had two meetings this week with CLL experts.  Turns out the remission was neither as robust nor as longlasting as I had hoped.  I had what's called a "partial response" to the clinical trial (which is better than adverse reactions or "no response") but is a bit disappointing.

I'm really not experiencing significant symptoms beyond some lymph node enlargement which is unfortunate because my work is requiring me to do a bit of on-camera work (whine, whine, whine).

Another change is that I'm becoming a "City of Hope guy" rather than a "Moores Cancer Center (UCSD) guy".  UCSD does a great job; I'm opting for COH due mainly to the logistics (COH is an hour closer to my home).  Both facilities have renowned CLL experts.

My wife and I are attending a workshop Saturday which is likely very relevant to whatever clinical trail I end up utilizing.

The most likely option at this point appears to be a randomized trial comparing Ibrutinib (an approved drug for CLL) with ABT-199.  ABT-199 has shown great promise but is only in a Phase III trial.  Being who I a am, I'd prefer the newer drug but the trial is randomized so if I enroll in that trial, I need to be okay with whatever assignment I get.

Expect another post around 12/12 (the day of the workshop) if I don't get lazy.  Thanks for all the interest in my CLL adventure.

By the way, the bottom line is that this continues to be a "chronic" disease which suggests I may have a good while left and it is very cool that I have access to the best of the best in terms of research and clinical quality professionals.

Potentially Significant Week

Some lymph node enlargement has occurred so I'm wondering about the durability of the remission from the clinical trial.  I have two meetings this week with two CLL specialists which will provide guidance as to next steps.

No significant symptoms--possibly a bit of fatigue but I nothing clinically significant.  I will post more after the specialist appointments. The best guess is that I will begin some sort of oral medication soon.  I will get lots of information from most recent clinical labs and will post whatever seems relevant.

In the meantime, check out this research on gratitude. It turns out gratitude is demonstrably helpful, literally, for (actual) heart health.
http://www.npr.org/sections/health-shots/2015/11/23/456656055/gratitude-is-good-for-the-soul-and-it-helps-the-heart-too

I hope you're doing well and that Thanksgiving included some reminders about opportunities in your life for gratitude.  For those looking for an optimism boost, check out:
http://www.ucla.edu/optimists/video


Since tomorrow is GiveBIG Tuesday, I thought I'd close with an opportunity to support Mountain Counseling & Training.  Tomorrow (beginning at 12 midnight) is an opportunity to support MCT's work in counseling, abolition, and strengths discovery.  Give $10 or more throughout the day and MCT get's the opportunity to 'win' incentive donations in various forms (they call this 'gamification' but it basically means we get additional donations based on:  number of donations, time of donation, etc.)
https://givebigsbcounty.razoo.com/story/Mountain-Counseling-And-Training

Finally, Another Post (Two Scenarios)

Here is my long delinquent post.  I suppose for those who have been following this blog, you could have guessed either that I met an unfortunate demise, succumbing to some rare or unexpected CLL symptoms or side effects from the treatment or that treatment has just been incredibly uneventful and that things are going swimmingly well.

Fortunately the reality is the ladder rather than the former.  Busyness in my professional life has kept me from blogging but response to treatment as been outstanding and we are now clearly in the 'home stretch'.

As I write this, I am receiving the latest (and last) infusion of Gazyva.  As per usual no side effects have been experienced.

There will be more blood tests and a final battery of more extensive tests (including a bone marrow biopsy) soon after which I will consult with Drs. Rosen and Kipps (CLL specialists who are on the cutting edge of clinical trials in the CLL world.

Bottom line:  I will continue to be 'followed' for the next few months.  Thanks to all for following me in this adventure (which is fast coming to fruition).  More to follow as this adventure wraps up in the next couple of months.

Don't Do It Alone and Two Responses to Challenges (like Cancer)

Here's a great (and simple principle).   Don't do it alone.  My personal experience is that certain professions and personalities are more prone to the trap of isolation than others.  Therapists, pastors, teachers, to name a few.

Last night I had dinner with a long-time friend which I knew would help break up the solitude of treatment but it also helped me reflect on the importance of connection with wise people who share your values (both of these are important).

Two Answers to the Question of How We Deal With Challenges (like Cancer diagnoses)
Wrong answer (to which we are often drawn):  Do it alone. Do it privately. It's safer and more convenient.

Right answer (which, for Christians accords with our philosophy of Christian Community): Do it with trusted mentors because that truly is safer.  Some will argue that I write from an Extroverted perspective here (and I do).  But they're wrong if they miss the principle.  The principle is about mentoring and connection and accountability.  Introverts may need to get these things through different means than the Extrovert but they surely have the same basic needs (connection/significance) and face the same basic realities (isolation breeds depression and disconnection with reality).

Here's some 'remote mentoring' from John Adams (via David McCullough):
“Rather than literally burning the midnight oil, which he judged to be unhealthy, John Adams advised his son to make the most of college by developing an inquisitive outlook that would prompt him to get to know the most exceptional scholars and question them closely. "Ask them about their tutors, manner of teaching. Observe what books lie on their tables. Fall into questions of literature, science, or what you will.”
― David McCullough

How is your battle with isolation going?  Any steps you want to take to further real connection? 

Second Day of Third Cycle

This is the second day of my Third (of Six) cycles of treatment.  Technically, my second day, since it is about 2 a.m. (the steroids are working).

Notable events

• dinner last evening with a long-time friend who had his own cancer diagnosis--we end up connecting with others around shared pains, which I suppose is a good thing if we reflect and learn rather than merely commiserate--some good reflecting and learning took place in our time together.
• first mention of "Complete Remission" (CR) yesterday by Dr. Choi who is running this clinical trial.  

Note:  CR's are good but are not the 'holy grail' of treatment.  Two other considerations are the durability of the remission (this being a clinical trial, we can only make guesses, hopefully 2+ years) and the hope for Minimal Residual Disease (MRD) which basically means that at the conclusion of the trial, the most powerful tests available do not show the disease in the bone marrow (which is where it originates).  

A CR is certainly a good thing and does suggest the possibility for a few (or a lot) more 'good' days (my friend last night reminded me we all face the possibility of mortality daily in various forms--I get that a lot).

But a CR is basically just "good", not necessarily important.  I find myself often remembering a statement Stephen R. Covey (of Seven Habits fame) used to make to the effect that being "good" is good but being good for something worthy is far better.  My application would be:  It is good that I apparently get a few more days but it would be far better if they are invested strategically.  Aye, there's the rub.

I am amazed by two things:

• how many resources are available to us (technology, education, global and instant communication, to name a few)
• how these resources are double-edged swords in that each of them carry the potential for greatness and the potential for waste (Solomon was right when he said there was no end to the writing [or reading] of books)

So, yesterday was a 'good' day, all in all, I hope your journey is also going well. How is your 'waste/worthiness ratio' going?

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.

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 . . .