Wed. 5/22 Michael's Home (and not a second to soon)

It's a testament to the flexibility of the City of Hope transplant team that I am writing this from the comfort of my mountain home (in Cedarpines Park).  Many people have worked diligently to ensure the environment to which I was returning was clean and safe (especially relative to pests and rodents, which are pretty much a staple of mountain living). 

There is still lots of activity to put the finishing touches on my den remodel which makes holding leadership and other meetings at my home office much easier. But I appreciate the fact that the COH team seems bent on carrying out the wisdom of their oft-stated question, 'What the point of curing the body if we destroy the soul?'  My discharge day was truly a day to acknowledge the sophistication of the COH team--they are all amazing in their passion, their training (even the student nurses) and their obvious commitment to excellence and service.

Only having been home a couple of days, I'm already enjoying the benefits of the work being done by so many friends and family over the past few weeks. It's easy to appreciate not being connected to an I.V. pole, sleeping quietly through long periods of time, and all the comforts of home (which one appreciates significantly due to their weeks-long absence.)

I will be followed by the medical team at least weekly for the time being so I'm hopeful I will be enjoying more and more unfettered engagement with the public as the next few weeks unfold.

The actual transplant went about as well as it could have.  I was released at the absolutely lowest number of days possible and the blood counts are returning to normal at the pace expected.  More next Wednesday as I have the first follow-up appointment.

I need to recast my expectations as to what and what kind of work I can accomplish in the next few weeks.  My stamina is less than I'm used to.  For example, I'm counting my time on the eliptical trainer in single digits these days. 

I'm able to participate in most of our regular and leadership meetings but am looking forward to when I'll be able to have more engagement in day-to-day activities (not that the team particularly needs my support). The MCT leadership team continues to carry out day-to-day tasks with excellence and I continue to hear stories of kiddos' lives being changed by interventions carried out through out team of direct service clinicians, family specialists, and parent partner, which really is what this is all about.

What I'm Learning

Mindfulness (the ability to be in the present with 100% focus) matters.  

I'm seeing more and more that staying in the present is the right answer for so many problems and opportunities, though technology and various 'bright and shiny objects' provides plentiful potential distractions.

Swing at the ball you're pitched.

Experiences like this make it easy to focus on what one can't do.  The reality is these times present unique opportunities for doing that which, in more normal times, often gets squeezed out by the urgent.  Tasks at which I can excel during this unique time include: strategic planning, blog writing, reading potential grants, reading growth-producing work from sources like the Harvard Business Review and various supportive materials to our student services (e.g. Gallup's new student-focused strengths materials, and the innovative "Seeking Safety" curriculum which is focused on overcoming the negative impact of trauma).

Sometimes Targets Help to Focus the Mind

Flash Bulletin ****Looks like discharge is going to occur tomorrow, Wednesday, 5/22****

This may seem like no big deal but I have been focused on returning to my life of relative normalcy for the last few weeks so for me it is akin to winning the lottery (not that that necessarily would be a good thing--Look at the research concerning lottery winners and you'll see what I mean.  But I digress.)

Reality is that, barring unforeseen events, I could very likely be wafting my way back to the San Bernardino mountains by midday tomorrow.  Not a second too soon, say I.

Canine Spoiler alert--Not a word to Luke the therapy dog (who is being groomed as I write this). He likes surprises.

Since I'm not long for the COH campus, here are some photos to give you the flavor of life here.

With gratitude to God, Becky (who put up with myriad tasks to get me through this), all the amazing staff here, I stand ready to return to my former life.  Balrog days hopefully over.

Working Toward D/C . (Target: 5/23) . American Paradigmatic Stupidity

We have a concrete target for Discharge--May 23.  I consulted with the attending physician yesterday who assured me in no uncertain terms that I'm not being released until it is safe to do so (this in response to my impassioned plea to return to my pretty good life of supportive spouse, cool Golden Retrievers, amazing friends/spiritual community, team at MCT that I actually LIKE hanging out with, etc.)  So the concrete may not be exactly dry on this concrete target.  But certainly I would appear to be returning to the aforementioned life this week or very soon after.

One thing this cancer experience does for you (the proverbial 'you') is to generate several 'cancer club' benefits (stuff you mere mortals believe but to which you only give lip service and which we addicts and cancer survivors live or die by).

These reminds me a bit of the addict who became CEO who shared three principles to live by (see earlier post) which addicts live or die by and everyone else considers and then decides to take them or leave them.  The addicts (and the cancer club folks) have an advantage (for which they have paid dearly). Could you achieve these commitments without going through the balrog days of cancer treatment?  Sure, but, let's get real, it doesn't usually happen.
Do I wish cancer on folks unafflicted so they can benefit from these commitments?  Absolutely not. But if you're doing to have to deal with this really obnoxious thing called cancer in some form, you might as well wring from the bloody experience every last benefit.

People in the 'cancer club' often:
Don't waste time.  They realize the cliche about 24 hours being all we have and time being our most precious resource are actually lasting correct principles (LCP's) which will either become our trusted friends or our destructive enemies.  These LCP's will either make us better or kill us.  A bit like the Ten Commandments.
Don't have a lot of tolerance for 'games'.  I mean by 'games" interpersonal dynamics which are founded in stupidities such as passive aggressiveness, vengeance, fear, or bitterness.  I like the internal self talk I often use, 'don't engage with that, you really can't afford it'.   I can't.
Don't waste energy on 'bright shiny objects'. I am, and always will be, an ENFP (Meyers-Briggs type called 'journalist' or champion).  The joke about this type is that they will always notice (and sometimes waste energy on) the newest bright shiny object.  The ENFP prayer:  ENFP: God, help me to keep my mind on one th--Look a bird--ing at a time. Don't laugh, there's a prayer for your type also.
Quit the Stupidity of Isolation.  What I mean by this is that the American individualism that we breath in unquestioning is, well, just dumbass stupid.  Look in the Bible (if you're among the Christian folk in this audience) and you'll find the majority (except for narrative stories) of the times that God calls someone or even just addresses them (e.g. in the Pauline epistles) are intended as "you" plural, that is, we are to do our best and most significant work in connection with others.

Why make such a big deal about this?  Because, as one of my brochures (for CCX) says, "Isolation sucks."  "Connection rocks."  And to give a 'shout out' to our armed forces, it didn't take long for Army leadership to realize that "The Power of One" was exactly the wrong message.  Now Army messaging is much more about connection and community.  There's even a senior training officer in the U.S. Air Force utilizing Brene Brown's work on vulnerability and daring leadership (all of which is focused on connecting rather than isolating).

By the way, let me respond to the introvert(s) in the audience who will say, 'Fine for you, Mr. Extrovert, but I am not wired for connection.'  Sorry not to sugar coat this for you but . . . Wrong.  The neuroscience says exactly the opposite.  You are wired for connection.  As an introvert, you may work harder for the connection and the resulting connection may be more thoughtful and authentic than us Extroverts who tend to think less and emote more.  Don't believe me?  I just now did a search for "We are wired for connection" and came up with . . . drum roll please . . . 115 million results.  Check out a few hundred thousand if you'd like but the reality is We are wired to connect.

I often say to my clients that on my goal list, I probably have over 50 goals that are incredibly important to me and not one of them has a snowball's chance in hell of coming to completion without connecting with the right people.  And I see that as GOOD news.

That felt good to say.  I wonder how many have ears to hear . . . Feel free to interact; I'd love to see the responses to the 'in your face' stuff above.  Hopefully the response is not to half my audience.

Days 5-8 (Hopefully Day 14+ is d/c)

This is the boring part.  Lots of waiting for what the medical community affectionately calls 'engrafment'--that magical process by which blood cell counts and other lab results return to normalcy.

Been re-reading "Dare to Lead" by Brene Brown.  Biggest ideas thus far:

THE HEART OF DARING LEADERSHIP

1. You can't get to courage without rumbling with vulnerability.  Embrace the suck
2. Self-awareness and self-love matter.  Who we are is how we lead
3. Courage is contagious . To scale daring leadership and building courage in teams and organizations, we have to cultivate a culture in which brave work, tough conversations, and whole hearts are the expectation, and armor . [defensiveness which prevents authentic communication] is not necessary or rewarded

Dr. Brown has some practical ideas here to transform our leadership from control to reward and from defensive to vulnerable and authentic.

Still shooting for a d/c date of approximately 5/23.

I've also been ramping up my sophistication in the cell group (Christian Community Experiments) by reading Joel Comiskey's "How to make disciples in the 21st century".  The biggest takeaway thus far is that American individualism is a major obstacle to creating authentic community experience.

See brochure included in Find post entitled "Michael and the Balrog Days" and go to bottom for brochure.

(Michael) and the Balrog Days +3 to +4

For Lord of the Rings fans, you will remember when the fellowship flees from the Balrog (big ass majorly evil monster) and Gandalf, the leader, ends up locked in prolonged mortal combat with the dreaded monster.  I may well be going through the Balrog phase at present--nausea, fatigue, even a bit of depression (been reading of depressive experiences of the likes of Lincoln and FDR so I push through with a certain amount of 'surrounded by witnesses' hubris), looking forward to achieving "Gandalf the White" status at the outcome.

Becky's here now which is a great help on many levels.  One reflects on marriage at a time like this:

• 'in sickness and in health' (from the traditional wedding vows)
• 'this is why they make you take vows' (quote from vulnerable scene in 'West Wing')

Assuming I get through this relative unscathed, better than I went into it, it will be as a result of the efforts of many, not least Becky.

Had some conversations with families here who are having a great deal more challenge than I.  Talking and praying with them is good therapy for us both.

I continue to be inspired by the quality with which the MCT team is pushing on with their responsibilities (and some not inconsiderable ad hoc challenges) as I play my backup role here.

Excited about getting into some planning on some initiatives, I'm hoping to catalyze in the the next few weeks, as the Balrog thing allows:

• Legacy Impact Giving Event & John McGill Concert -- Opportunity for Mountain Community to Give posthumously through their life insurance and other vehicles to causes they care about.  June 9.
• Regional Youth Foundation -- collaborative fund raising with likeminded child-serving org.  Details to follow.                                                                                                                       
• CCX Community Groups Experiments (see attached for latest brochure).

Transplant Day . (Day 0)

Completed the actual transplant today—all of approximately 40 minutes.  Now the game is to provide medication and support to bring lab counts back up to normal and restore normalcy.  Dr. Rosen says to expect feeling ‘like you’ve been hit by a small car’ (rather than a semi-truck). Some rough patches before and after but side effects are largely manageable now.

There is lots of activity around campus getting ready for the Bone Marrow Transplant Reunion on Friday.

I’ve been entertaining myself with a listen to the eminently well-written Leadership in Turbulent Times by the leadership biographical scholar, Doris Kearns Goodwin. Though I don’t believe the current political climate was mentioned once, there are numerous times it’s easy to yearn for the leadership of FDR, TR, Lincoln, or even LBJ which were largely based on honor, truth, commitment to right principles, and authentic relationships. FDR’s heroic battles against polio are a welcome respite to the current challenges both my own and those in the political landscape.

I’m not feeling great at present but am hopeful that the worst is behind and I will soon be home. 

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.