My Left Turn - Leukemia

My Left Turn

As Fall turned to Winter in 2022, my life took an unexpected left turn.  I began having inflammation in various part of my body - my neck, my back, my shoulders, even my eyes.  What was strange was that the pain would be one place one day and somewhere else the next.  What was going on?  I scheduled numerous doctor's appointments trying to figure this out.  What was more frustrating was I couldn't even get certain tests or specialist appointments until deep into 2023.  I woke up on New Year's Eve and my feet, knees, and hands had all swelled.  My wife Stacey decide that enough was enough and carted me off to the emergency room.  They ran a lot of tests showing nothing, but the ER doctor did not like the looks of my blood tests.  She consulted with an Oncologist and had me admitted to Mary Washington Hospital.  In the meantime, my hands and legs continued to swell such that I could no longer walk nor even get myself to the bathroom.  I spent the worst weekend of my life waiting to get a bone marrow biopsy while having to be changed what seemed like hourly.  Once done, the biopsy confirmed I had Acute Myelomic Leukemia.  At the advice of the Mary Washington Oncologists, I transferred to University of Virginia (UVA) hospital in Charlottesville, one of the top hospitals in the country dealing with Leukemia and bone marrow transplants.

What is Leukemia?

Leukemia is a cancer of the blood.  There is no 'tumor' and the cancer resides within the blood and inside the bones and bone marrow where blood is produced.  Rather than normal blood, Leukemia produces something called blasts.  Left untreated, it will compromise one's immunity system such that some outside infection will kill you.

Science does not know what causes Leukemia.  There is some thought that one is born with it and at some point it is activated.  At the same time, there is no statistical evidence that the disease is genetic, passed from one generation to the next.  Leukemia just happens to some people - a left turn no body wants.

If you want to read more about Leukemia, I suggest you start here.

My Path To 'Cure'

I had some great doctors at UVA.  The best was the lead Oncologist, Dr. El Chaer.  He would only come talk to us when he had something new or worthwhile to say.  Day-to-day, this drove my wife and I nuts.  But, in retrospect, I appreciate it.  The quality of our fewer conversations was incredible.  The process for Leukemia treatment is highly individualized and tailored to the specifics of the disease as characterized by analysis of the biopsy results.  That analysis was performed by the Mayo Clinic and fed back to Dr. El Chaer.  More information flowed back over time as more was known.

The process started with a round of 'infusion' chemotherapy.  The goal here was to kill off most everything in my bone marrow, bringing my immune system down to nothing.  They then wait a week, take another biopsy, and go from there based on results (is cancer gone, almost gone, still there).  I was quite successful in this stage, eliminating ~98% of the cancer.  I also managed to avoid any major infections while my immune system was down.  My hemoglobin/platelet production picked up quite quickly, allowing me to go home from the hospital on 1 Feb, after a month in the hospital.  Normal course would have me meet with Dr. El Chaer in clinic to determine the next step.  I intervened before that, but let's not get ahead of ourselves.

There was some other work that got done in the hospital and I don't want to minimize that.  I entered UVA essentially bed-ridden, my legs, feet, and hands swollen and unable to operate.  They gave me medicine to drain off the swelling but getting to move around on my own was work.  The nurses would not let me just go on my own.  The fear of me falling was great.  Still I managed to progress from getting out of bed and sitting in  a chair, to moving around the room with a walker, to being able to get into the bathroom on my own (that was a big one).  I also managed to balance without the walker and get up and down consistently.  I cannot thank the Physical and Occupational Therapy staff enough for helping me push past both real and perceived limitations and being a capable human being again.

Genetic Markers and Tendencies

Using latest enhancements in both oncology and genetics, doctors are able to characterize an individuals Leukemia based on genetic mutations found from the bone biopsy.  These mutations indicate tendencies for how the Leukemia will behave over time.  My results came back with 6 mutations (average patient has one or two).  Of those, three were particularly bad.  The gist is that my Leukemia is nasty and has statistical tendency to come back even after treatments (chemo, bone marrow transplant, etc).  

Having mutations as I do essentially dictates an aggressive treatment strategy.  Thus, to fight it one should plan for multiple rounds of chemotherapy, both in- and out-patient, as well as bone marrow transplant.  This amounts to three-year battle if there are no set-backs.  Of course, mutations would dictate set-backs are likely.  So, as options were laid to me, best chance of success was to throw all my chips on the table against less than favorable odds.  I could be less aggressive, but that made odds even worse (in my mind a waste of time and resources).

The other option was to stop the active treatment, manage my pain and discomfort, and accept death when it comes.  This comes with the advantage of spending my time with my family vice in and out of hospitals while maximizing my quality of life for my remaining time.

Decision Factors

As I faced the decision of way forward, the following were factors:

•     Although my life has been far from perfect, I have no regrets and no 'burning' goals I need to meet.  I have endeavored build the foundation in my children for them to become productive and happy adults.  Aside from enforcing those teachings/efforts, I don't see anything drastically different that needs to be done.
• I cherish the relationships and resultant experiences I have had across my 58 years of life.  Though I have many small threads of incompletions and relationships I've not cultivated as best I could, nothing bubbles to the surface as a major incompletion - I can comfortably go to my grave today feeling I've said all I have to say.  This goes not only for my peers, but also with God.
• My life was coming to a major  cross-road in 2025 anyway.  That year marks a) my 60th birthday along with various retirement and Social Security eligibilities that come with reaching that age, b) 20 year anniversary with the Government and eligibilities that come with that, and c) my daughter's graduation from High School transitioning Stacey and I into 'empty-nesters.'  In my mind this would bring a major career transition.  I planned to enhance my technical skills, take job in commercial software development (no Govt. contracts, minimal bureaucracy, no denial  of technology due to stupid rules, and flexibility based on what I as an employee wanted and actual product needs of my employer). and work mostly from home, wherever I chose that to be.  You can throw that out the window if I am doing chemo -- no time, no energy, and all income feeding the medical bills.  So, I really have to accept that future is now dead.
• Lastly, what are the long term repercussions, financial and otherwise, of courses of action.  Medical events are the number one cause of bankruptcy in they US.  A small car accident with six month hospital stay will destroy the average family's finances.  Yes, I have medical insurance.  However, even having to pay 20% of $1M will wipe out an entire year of my salary.  Having state of the art treatment from UVA is great, but each time some doctor entered my room, there was a 'cha-ching' somewhere.  These costs don't go away when I die and they don't care if treatment is successful or not.  I could easily eliminate my children's opportunity for an education by putting on my armor and going to war with my Leukemia.  Why should I be such a burden only to die in failure two or three years from now?
• As Stacey walked the halls while visiting me at UVA, she had two occasions to overhear cancer wives begging doctors to stop the treatments and let their husbands have peace.  In the first few days at UVA, the social worker signed me up to have a volunteer who had similar Leukemia experiences to mine come talk to me for encouragement.  They never darkened my door.  Doctors quoted me plenty of statistics but evidence of success, to my engineering brain, was paltry.  Preachers will expound all the time how God will give miracles.  If they were that common, they wouldn't be miracles.  

With all this I have decided to forego any additional treatments, put myself under hospice care to keep me comfortable as I approach my death.  As you are reading this, I realize you are putting it through your own filters and reaching conclusions different from mine.  I just put this forward as my reasoning and decisions.  I am not right but am comfortable in my decisions.  I just wanted to document my process.

I plan to write more blog posts on more general and philosophical topics as I try to put my life into some kind of perspective.  Thanks for sharing in my journey.

Dan 

Writing as a tool, not just documentation

 

I listened to this podcast several weeks ago and got an insight into a better way to look a writing. Maybe it will motivate me to write more blog posts. I spend so much time on my job writing to convey what I know. In the course of writing it, I always need to go back to source material or Google to refine the ideas. In doing so, I am improving my understanding. The idea in this interview takes this a step further: Write about something you don't understand, employ different areas of your brain, and come to understanding of that topic. Below is partial transcript of podcast with the relevant topic. I encourage you to listen to the whole thing and then write down your own opinions about it.

From Re:Thinking with Adam Grant Podcast, Season 1, Episode 8, October 11, 2022- How Celeste Ng Writes Fiery Prose: Apple Spotify Transcript

Celeste Ng: I always write from a place of not understanding versus I think some of what you're talking about where, especially in the non-fiction world, you research, you learn about something, you understand it, and then you write about it. Right? To share that, for me, it's almost, it's almost the reverse. There's something that's confusing me. I'm like, “Why would somebody do that? How did you get yourself into the situation? Why are you like this?” And writing for me is my way of figuring out what that is. And so by the end, when I've finished writing, then I have figured out what it is it, it can't go the other way for me. And I think that's one of the big differences between my process and sort of what you're describing.

Adam Grant: I think that a lot of people see writing as a vehicle for communicating ideas. But it's also a tool for crystallizing ideas.

Adam Grant: So often I find that what's fuzzy in my head becomes clear on the page. And that when I try to write down, you know, an inkling, it could become an insight, or in some cases, I'll see the gap in my knowledge or my logic, or when I'm trying to spell something out in writing, I have to articulate my assumptions. I have to address counterarguments, and I guess I think a lot about the observation of how can I know what I think until I see what I say.

Adam Grant: Or until I see what I write. And I think we, we do enact our way into our thoughts through writing. And I guess one of the things that makes me curious about is I meet a lot of people who say, “I'm not a writer”, and therefore they don't write. And it's kind of like saying, “Well, I'm not a public speaker on stage, so therefore I don't talk”, right? It’s like, wait, you're, you're missing the point that writing is a tool for thinking, and if you wanna be a better thinker, you should write more often. It sharpens your reasoning. What do you make of that?

Celeste Ng: writing is a way of thinking and that many of us, when we go to high school, you're taught to do it like you know, you should have your whole ideas, and then you basically just dictate them to yourself and write 'em down on the piece of paper.

Celeste Ng: Whereas I think it's much more what you said. You articulate something on the page and it crystallizes something that you hadn't been able to say. Or you write down what you think you know, and then you read it over and you go, “Well, but wait, what about this?” And you start to make it more complex. And so that was one thing that I really tried to teach them that, you know, they would write a draft and they'd be like, “I'm done.” And I'm like, “No, no, no. This is your thinking through, right? This is where you're starting to think.” Um, so I, I, I really agree with you on that. I really think that writing is, it's odd because it is both the skill you are trying to get, and in order to get it, you have to do it. Right? It's this thing that you learn to do. By doing it.

Adam Grant: Which is a paradox. I think I, I've watched a lot of people get away with… Well, let, let, let's put it this way. I, I've seen too many people get away with faulty logic because they’re charismatic speakers. And one of the things I love about putting ideas on a page is, is it forces ideas to live or die more on their merits, right? As opposed to how they're presented. And I think so often you find that, that somebody who's a captivating talker, uh, struggles to articulate their insight on the page. And that doesn't mean they can't write. For me, it means that their unclear writing is a sign of unclear thinking, and they should stop using their charisma as a crutch, and, you know, force themselves to articulate ideas in a medium that doesn't benefit from, you know, their elocution or whatever skill is allowing them to be persuasive interpersonally.

Celeste Ng: Yeah, I think that's true because, you know, personal charm is real. Right? And like you said, if you write things down on the page, you take one of those variables out of the equation, you take away the variable of whatever your personal charisma or your, you know, your dramatic reading, whatever it is, your flare. And the, uh, you know, you can still certainly do a lot of pyrotechnics with your prose, but in some ways it, it takes away that layer of performance. And the other thing is that I think unlike something that is heard, like a speech, what's on the page is experienced at the reader's own pace. You can read it, and then they can read it again. Right? And they can read it again. And if they keep reading it and they're like, “I don't think you're saying what you think, you're saying.” They caught you. Right? And so in a way, like you say it, it kind of separates what you're saying from the act of saying it. It separates it from time and it has to hold up on its own.

Achieving Your Objectives in 3, 2, 1

 I spend a lot of time reading articles by 'thought leaders.'  It is even more cool when a friend and colleague publishes an article of that caliber.  Please check out Noam Oz's article using techniques he learned in Ju Jitsu in one's career and projects.

Achieving Your Objectives in 3, 2, 1

Time of Opportunity

"THESE are the times that try men's souls. The summer soldier and the sunshine patriot will, in this crisis, shrink from the service of their country; but he that stands by it now, deserves the love and thanks of man and woman."  Thomas Payne

In these times of social distancing and impending impacts of the time, society is bound to change.  We can move one of two ways:  we can become fearful and selfish or we can rise to a higher level of responsibility.  We need to help people.  The traditional means of service come through groups gathered together in mutual support.  That won't work this time.  This time we need to innovate and create novel ways of moving our society forward.  I don't know what those means are, but we need to find them.

I've spent most of my career supporting the Department of Defense.  We always said the bureaucracy would be put away if we ever got into a real war.  Well, it wasn't a war.  It's a virus.  I have envied the 'Great Generation' for having a purpose and chance to make an impact.  Now we have that opportunity.  Let's not waste it.

2020 Reading List

Starting in the Fall of 2019, I began one of my periods of intense reading.  Most of the books are business or self-improvement books.  As we start 2020, I want to keep track of what I read and what I want to read.  I would like to do reviews of those books also.  I've made promises like that before on the blog and not stuck to them.  Oh well!

I plan to update this list as the year progresses.

Happy New Year!

Books Read in 2020

• Death by Meeting by Patrick Lencioni
• The Four Hour Body by Tim Ferriss
• The One Minute Workout by Martin Gibala
• Talking to Strangers by Malcolm Gladwell
• The Death of Ivan Ilyich by Leo Tolstoy
• The Infinite Game by Simon Sinek (in progress)

Books To Read

• Indistractable: How to Control Your Attention by Nir Eyal

Dealing with 'Management by Intimidation'

We often consider them bullies.  They instill fear in our colleagues and our leaders.  Our natural instinct is to avoid them.  But that may not be the best way to deal with them.

If you like to use "Management by Intimidation" as a tactic or have someone working for you who does, I think you need to eliminate this behavior.  It is detrimental to your whole organization.  I point you to  Robert Sutton's book, The No A**hole Rule to deal with this.  Unfortunately, many times you're not in a position to change these people.  You just have to deal with them.

When I was in a previous position, I encountered the biggest bully I've worked around.  He worked in the Belgium office.  He would rant and rave, belittling the work of everyone in our office.  All the U.S. managers were afraid of him, going out of their way to avoid confrontation with him.  I thought he was the definition of an a**hole.  I later had the chance to collaborate with some engineers who worked for him.  They loved him.  I decided I needed to watch more closely.  That's when I realized that the bullying was a technique more than just his personality.  He was quick to criticize anyone who didn't work for him while defending his own, justified or not.  I originally thought he hated Americans.  But, as I continued to observe, I realized he just didn't respect them, presumably because they wouldn't stand up to him.  Lastly, he was very intelligent in finding the problems and faults to exploit with intimidation, putting others on the defensive since, to some degree, he was right.

So, given the bullying is a purposeful tactic for doing business, how can we effectively deal with this to achieve successful outcomes?

1. Temper your emotions.  Intimidation is intended to cause fear, anger, and shame.  Keep that in mind and don't fall into the trap.

2. Listen.  Understand the bully's point.  Rationality and logic can prevail, but only if you can show the bully you understand the logic beneath the attack.

3.  Stand up for yourself and others.  The only way to render the attack ineffective is to thoughtfully engage.  Remember, the bully has no respect for those that shy away.  This will be inherently uncomfortable for you.  Don't expect a whole lot of help from colleagues, as they will tend to want to avoid conflict.

4.  Move forward with the end in mind.  Once you've made your stand, then you can look toward common goals and "win - win" -- maybe. 

This is not a fun game.  But sometimes you have to play.  Be brave and stick to your principles!

You're Either Part of the Solution or Part of the Problem

"You're either part of the solution or part of the problem."

That saying is one of my favorites.  First, I would ask you be careful using this saying.  It can easily be taken as a criticism on insult, depending on when you use it.  In fact, I rarely will say this to anyone.

The value in this saying is to keep it to one's self and use it as an evaluation criteria for whatever you are doing.  As human beings, we often partake in destructive behavior.  I must admit that I have picked a fight with my wife for no good reason.  More often I've complained out of my frustration about some situation.  I've tried to train myself to stop, and ask "am I part of the solution or part of the problem?"

It's not a good feeling to realize you're part of the problem.  Don't beat yourself up.  Just stop!

Are YOU part of the solution or part of the problem?