Notes from Inc.com interview, ‘What 98 Brain Tumors Taught Me’

Amy Morin, author of 13 Things Mentally Strong People Don’t Do and I recently had a great discussion regarding some lessons learned, after hearing I had Stage IV Melanoma, including 98 brain tumors and a six weeks to live prognosis.  Thankfully its three years later and I’m still here. She wanted to know what I might have learned from the experience and the intervening years.

The result of our conversation was posted on Inc.com today.  You can check it out here: http://www.inc.com/amy-morin/5-life-lessons-a-terminal-diagnosis-taught-this-courageous-man-about-life.html?snmefr and thank you Amy for taking an interest in me and my story; as well as doing such a fantastic job summarizing some of the main points we discussed.

In addition to our conversation, I also had some notes. Not all made it into the above because a) there’s a word limit; b) yeah, I can be a little wordy.  However, I thought I would capture them below in case they are of use to someone facing or helping someone face a daunting health crisis like mine.

So, here goes…

“What 98 Brain Tumors Taught Me”

1. Forgiveness.

Melanoma is something like 95% curable if caught during early stages; and, conversely, deadly when it enters later stages. In my case, the dermatologist I was seeing misdiagnosed the bump on my scalp, thinking it was a fatty cyst. By failing to biopsy the mole, which in hindsight he should have done due to its characteristics (classic ABCDEs – asymmetrical, border, color, diameter, evolution, search for ‘Melanoma and ABCDEs) he catastrophically screwed up.

But, I know from my career as an engineer that everyone – especially yours truly – makes mistakes; especially when dealing with complex problems. Either way, I knew instantly if I was going to survive this terrible diagnosis that I had to forgive him. Otherwise it would consume me. I was not going to throw away what time I had left on hate. I forgave him.

The situation can still make me feel angry but I have spent close to 0 time stewing about it. When it does come up I remember to let him off the hook, think about my own imperfections, and remind myself that forgiveness is a practice; it is a conscience act of saying “I forgive this person” and then, if the temptation to spin off into some indignant, self-righteous anger comes up, kick it out.

2. My participation required.

Our society maintains a certain mystic around the medical profession; that doctors have all the answers and should, by virtue of training and position, make every call regarding health. For cancer at least (probably because no silver bullet exists yet), this is not the case. So I had to step up, get through the fear, look at the data, talk to friends and family, pray, and decide. This included deciding on surgeries, chemotherapies/immunotherapies, clinical trials, and even weekly trips, for six months, from Colorado to California.  It was on, or at least partly, on me.

3. Embrace the fearful internet.
There is a prolific amount of information out here. It drove me crazy but was a net gain. I read everything. I made bad decisions as a result; but also made some good ones.

Intel has stated that Moore’s Law is cooling off (the “law” that stated computing power would essentially double every two years while computing capacity growth slowed). A 2011 study in the Journal of Science, showed that the peak of the world’s capacity to compute information was in 1998. Since that time, technological growth has slowed. Post 1998 each new year allowed humans to carry out approx. 60% of the computations possibly executed by all existing general-purpose computers before that year. Fun stuff to think about…okay only if you are a nerd…I wonder why Amy chose not to use this…but continuing nerdeuphoric information…

While Moore’s Law cools, the amount of available information grows.

Buckminster Fuller created the “Knowledge Doubling Curve” when he noted that until 1900 human knowledge doubled approximately every century. By World War II knowledge was doubling every 25 years. Today things are not as simple as different types of knowledge have different rates of growth. For example, nanotechnology knowledge is doubling every two years and clinical knowledge every 18 months. But on average human knowledge (um average human knowledge) is doubling every 13 months.  According to IBM, the build out of  the “internet of things” will eventually lead to the doubling of knowledge every 12 hours (http://www.industrytap.com/knowledge-doubling-every-12-months-soon-to-be-every-12-hours/).

So what’s the point.  THE POINT IS that just because knowledge is doubling that does not necessarily imply or equate to quality. For example I just cut/pasted/plagiarized (some 0-;)  some information regarding statistics without citing my sources.  That is happening  everywhere.  So, again THE POINT IS search but be careful.

4. Lean on friends.

Advice from friends and family. My wife in particular, along with a few close friends, provided sounding boards for what I was reading on the internet and hearing from the doctors. There is also plenty of research “out there” that suggests cancer patients with a strong support group have, statistically, better outcomes.

5. What matters?
I will never “wish I would have spent more time in meetings.” I’ve lived that. The first thing I thought of when I got the news were my wife and kids. I was, ironically, at work when the doctor called. I went home to my family. That’s what is important when you get news like that.

6. Hamburger, shakes, fries. Whatever man.
I was a chronic cheeseburger obsessed aficionado-addict-aholic. But after reading anecdotal, personal experiences who radically changed their diet and received ‘spontaneous remission” (someone survives cancer without the medical explanation), I said “no” to meat and refined sugar three years ago. Every time I have been tempted I think about 98 brain tumors, my wife and kids, and how I never want to get told I have progressed or new cancer again. Doesn’t mean I won’t receive that news – I get that – but if I do I want to know that I punched back hard. This includes a near fanatical devotion to exercise every day as well diet. Here’s a little more detail on diet which I’ve followed for last three years (http://www.budwigcenter.com/the-budwig-diet/#.VmEXTHarTIU

7. I’m no terminal super hero.
What’s that Queen Latifa movie where she finds out she has a brain tumor and goes out and lives her life to the fullest? Pah! Or the myth (maybe its not a myth I don’t know) about how when people receive the news they are going to die, they suddenly start shooting rainbows out their fingertips (or, um, nether regions)? Yeah, I didn’t get struck perfect, knighted, or welcomed into the community of sainthood by virtue of a terminal diagnosis. Just ask my wife, kids or friends about my un-rainbows. Do I think about life a little more and appreciate it, yeah I think so. But its still life, I’m still me, and I’m still living in the middle of it.

8. Know thy life insurance.
It is very important, if I die, to make sure my family is covered. Fortunately, they will be as long as I am in the employ of my company. That’s the rub. I would advice anyone to do this now – find out what the terms of your life insurance are. I highly recommend getting a policy that is not tied to your job. Lesson learned.

9. Kind and Assertive.
Those kinds of principles should not be mutually exclusive, especially when dealing with insurance companies. You have to be ready to fight for treatment options and care. At the same time it does no good to do it with an angry voice or berating attitude. Its not that there is some master malevolent plan or the folks on the other end of the phone wanted to see me hurt. But, as with any large corporation or human system where policy and ultimately human frailty are involved, there’s gonna be trouble sometimes. I got great care from my insurance, but we had to work to get there.

This goes for treating medical staff and doctors as well. Its an art, even when in pain at times, to be kind yet assertive. I could also say something here about how we absolutely don’t want socialize medicine but, actually, should be working towards personalized medicine models (especially as it relates to hard to solve problems like mine); but that question of social medicine has become more a debate over emotionally over-charged, political views than good, reasonable discourse and logic.

10. Euphoria is the absence of pain.
I realized this recently having been in some acute, chronic pain from treatment, that euphoria = no pain. Euphoria translates to something like “to bear wellness” ((/juːˈfɔəriə/; from Ancient Greek εὐφορία, from εὖ eu, “well”, and φέρω pherō, “to bear”)…this is different than the more modern use of the term used to describe an all night “rave” under the blinking lights at a club in a back alley in Borneo. This train of thought leads me to wonder whether we are born euphoric, in a state of well being that is euphoric…just being our healthy selves is not only a privilege but actually a state of euphoria, we are just maybe too ‘caught up’ to realize it.

11. Death to death. 
I am a Christian, raised Catholic but now practicing Lutheran (God rest my Grandmother’s soul, and sorry Father S, Mom), but am also “blessed” with a constant cycling brain and engineering background. I know intellectually that believing this life is not the end is, ultimately, a matter of faith. We either choose to believe it or not and I choose to believe it today.

That said, what helped me was to read about near death experiences (http://www.nderf.org/) as well books like “Proof of Heaven” by Eben Alexander (neuroscientist who had profound near death experience) and Kubler-Ross’ “On Life after Death.” I found personal experiences more encouraging at times than remote or abstract statements about what happens next.

Love what Walter Murch, one of the mad geniuses behind The Godfather and Apocalypse Now, had to say in recent interview for Nautilus,

“…it’s very presumptuous of us to think that we are the end of it. Yes, we can perceive everything that we can perceive, and we can perceive downward pretty efficiently thanks to science…but constitutionally, I would say, it’s impossible for us to scientifically perceive upward. We have intuitions about that, which is the whole idea of religion…There is a kind of science in the Bible of, don’t eat pork, don’t eat shellfish, these things, behavioral stuff; but what are these based on? We now know what they’re based on and we can see the larger picture because we’re further down the road, so my hunch is that, I mean it’s a hunch, but a belief is that there are many levels beyond us and I don’t know what those levels are but I know that they are there…”

So the point is it is possible to not really understand something prior to believing or accepting it. That does not make it any less real, missing or not there.

12. Yeah, go figure, Einstein was right about relativity.
Einstein’s theory of relativity just celebrated its 100 birthday. Within the pantheon of his well weathered theories, is the statement that time is an illusion. I have, looking back, experienced that…I remember 6th grade Grammar class seeming to stretch on for back to back eternities, forever; then, when you watch your kids go from birth to 10 in a blink of an eye.

The experience of the relativity of time is my personal experience…and I realize that if I survive another 5-10-20-30-40-beam-my-consciousness-into-a-billion-cyber-years-God-forbid, at some point I will again, just as I did when I got the cancer news, look back and realize how quickly it went. Time stretches back but is gone, whoosh. This is a description of the human, emotional experience of time rather than the harder science in which Einstein proved relativity (sorry Newton). But either way, against this backdrop of time elasticity, there is the “moment” which was gone when I wrote “moment” (damn there it goes again), so I might as well try to enjoy it.

13. Kubler Ross was right too.
I spoke about Kubler-Ross above…she’s most famous for describing the five stages that all people go through when they are dying, according to her studies and work with terminal ill patients.  The stages are, as stolen from Wikepedia:

  • Denial — The first reaction is denial. In this stage individuals believe the diagnosis is somehow mistaken, and cling to a false, preferable reality.
  • Anger — When the individual recognizes that denial cannot continue, it becomes frustrated, especially at proximate individuals. Certain psychological responses of a person undergoing this phase would be: “Why me? It’s not fair!”; “How can this happen to me?”; ‘”Who is to blame?”; “Why would this happen?”.
  • Bargaining — The third stage involves the hope that the individual can avoid a cause of grief. Usually, the negotiation for an extended life is made in exchange for a reformed lifestyle. People facing less serious trauma can bargain or seek compromise.
  • Depression — “I’m so sad, why bother with anything?”; “I’m going to die soon so what’s the point?”; “I miss my loved one, why go on?” During the fourth stage, the individual becomes saddened by the mathematical probability of death. In this state, the individual may become silent, refuse visitors and spend much of the time mournful and sullen.
  • Acceptance — “It’s going to be okay.”; “I can’t fight it, I may as well prepare for it.”; “Nothing is impossible.” In this last stage, individuals embrace mortality or inevitable future, or that of a loved one, or other tragic event. People dying may precede the survivors in this state, which typically comes with a calm, retrospective view for the individual, and a stable condition of emotions.

Of-course this could be considered a bi-product of modern life. We can often see our mortality way in advance, know what is going to kill us, days-weeks-years before we die.  Either way, my experience is that I did not go through these stages just one time; rather over and over, sometimes many times a day…or at least I went through the first 4 stages this way many times until I reached acceptance. That acceptance was or, really is still today (because I sometimes repeat this spin cycle), the realization that whatever happens everything is okay, is to a certain degree out of my hands, and will be whatever it is meant to be.

So, I can and will try to the best of my ability to participate in my health, to lean on my friends and family, to have faith and do whatever I can in my power to be healthy, but at the same time I have to accept whatever will be, will be and is.

That’s it, that’s all folks, hope these notes from my convo with Amy helps someone. Peace and, as always, let me know if I can help or share any experience with you.  I will respond to each email personally, leland.fay@gmail.com