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

Opposite work

Today, I’m relatively okay with the prospect of dying from cancer. Yet I choose to believe that I’m going to live. Those two ideas make strange bedfellows. They don’t really make sense as a combo meal, kind of like broccoli and Cheetos. Yet somehow or another they work gastronomically and I’m okay with some or all of it not entirely making sense, just for today (thank you Stuart Smally).

There wasn’t always this truce in place. It wasn’t always this way – believe-you-me friends and fellow freaks. The biggest brawls I’ve had since being diagnosed with cancer have been with myself. This particular fight, between the dying and living camps, escalated to epic proportions some time ago. We’re talking a bloody cage match- Ricky Rude vs. The Ultimate Warrior at WWF Summer Slam 1990 or Hulk Hogan and Andre the Giant smashing folding chairs over heads- dimensions.

On the one hand I really wanted to believe that no matter what happened everything would be okay. I didn’t want to walk around pissed off, berating doctors, kicking puppies, punching babies, or pushing old ladies down stairwells, bitter and depressed to the bitter end. If anything I wanted to be an example to my boys and friends of how to comport oneself, even if I felt like the least qualified human to do so and even if things didn’t end up going my way.

Who knows, I told myself…Maybe dying would be the very thing that pushed Connor and Derek to become world famous musicians of the legendary band “Flux Capacitor,” in between stints as future NHL hall of famers, after graduating from MIT with doctorates in rocket brain science surgery and advanced metaphysical ministry? And Sarah, not to be left out, would fall madly in love and re-marry the next billionaire philanthropist, who’s fortune 100 company would simultaneously cure toe fungus and cancer (oh the irony!) with a wine derived entirely from polluted melted polar ice cap H2O which, in turn, would prove safe for hopeless alcoholics to guzzle responsibly (damn you cruel irony, damn you to Hades) while simultaneously removing those stubborn coffee and pets stains on carpets. 

Okay, so things maybe wouldn’t come to pass in such monumental ways – hey but maybe they would, ya never know – but you get the point. My passing would yield, despite the hardship sure to be in attendance, a net positive result.

Diametrically opposed to acceptance of dying was the insistent thought/desire/hope/belief in living.  As I tossed east, west, north and south in bed at 2 a.m. or screamed on the trail at 7 a.m. (much to the amusement and/or trepidation of my fellow runners/walkers who were likely thinking “Just smile and wave (and run away) boys, smile and wave (and run away)”), it had to be this way.  I had to be healed no matter what. Belief in healing has been well documented with a load of stats and studies that suggest positive attitudes are a key ingredient in any surviving cancer concoction; and beyond that, as far as I was concerned, it was also an intrinsic article of faith that I better try to cultivate.

So these two concepts waged war, using me as fertile punching grounds, leading to sleepless nights, unpleasant drives to work, surly, bad moods, near puppy kicking and people pushing incidents etc.  The best I could do was to try not to think about either one, dying or living, good or bad, right or wrong, pro or against, for either option. I had to wave “bye” to both for a time.

Here one of my favorite Seinfield episodes comes to mind. Its where George realizes that because absolutely none of his little plans and designs have ever worked, he should do the exact opposite of whatever his mind tells him to do.

@ 25 years ago this kind of approach to life began to make some serious sense. I was busted up pretty good at the time. Nothing was working right.

A friend used to like to say, whenever the subject of me and “brokenness” came up, “You know Lee the only thing that needs to change in your life is, EVERYTHING.” He’d follow that up with a good laugh, “”Har-har-har,” which I didn’t really find all that hilarious … 0-;

But I eventually realized that he and Costanza were actually onto the good stuff and I better start practicing the rule of opposites.

Doing it wasn’t easy or fun. In fact I found opposite work colossally hard; especially because it involved taking control of my thinking; or at least, continually redirecting it. As that same loving a-hole with the quote and the laugh above used to say, “Lee, you’re not responsible for the thoughts that come in your head, but you are responsible for what you do with them.” I wanted to quit everyday, a couple hundred-hundred times an day, hour, minute, second and do some serious binge thinking.

As it turns out, perceived suckiosity might actually have been a good sign. You know something along the lines of that old adage, “If it’s not hard it’s not worth doing.” Or as Dave Goggins in The 40% Rule: A Navy SEAL’s Secret to Mental Toughness says, “If it doesn’t suck we don’t do it.” Word.

The point is that sometimes a thing or things don’t really have to make sense, right now. Maybe they will later. That’s not a requirement for success or meaning or whatever.

Back to near present time frames, by letting go of the living or dying battle for awhile, I eventually came to accept them both, together, of being two sides of the same meal of whatever experience I was having.

Walter Murch, one of the mad geniuses behind The Godfather and Apocalypse Now, is not only a legendary film editor but a serious science nerd and meta physicist. I like what he had to say in recent article from 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.

Today I’m okay with dying but I’m also believing I’m gonna live.

Okay. Done. Peace. Truce. May the schwartz be with you.

Back to dinner.

broccoli-cheetos2

Euphoria

 

If you had told me when I was sobering up twenty four years ago, that I could feel good, great, or even euphoric just “being me” I would have laughed in your face. After croaking out a hallow Seth Rogen style laugh, would probably have accused you of suffering from Terminal Cornball Disorder (T.C.D.) and pattered my crazy self away as fast as my crazy paws could pitter. I mean people, as far as I was concerned, didn’t feel good, great or even “euphoric” without extra curricular help. Inconceivable!

Yet the word “euphoric” keeps popping into my head this week. Wikipedia says that euphoria is derived from Greek roots meaning “well” and “to bear.” I read this as “to bear wellness.” I had been thinking about euphoria more as an absence of pain. Yet when I considered the definition and my own ideas further, I realized they were the roughly same thing.  I mean pain and sickness are the antithesis or opposite of wellness right?  So being well and in a good state of health should be considered – and this made me sit up in my chair – a state euphoria.

Over the last few days I’ve found a few things that have helped tremendously with the ulcers and gastritis (inflamed insides).  We’re talking going 3-8 hours without the internal forest fire ablaze in my guts, entire nights spent actually sleeping (what a concept!), and riding to work with the radio off and feeling okay in my own skin. After spending the majority of the last 60 or 90 days living inside the flames, I can tell you that is indeed an apt word for the experience.

This leads me down a philosophical path. Sorry about this.  As with anything here, please take it or leave it as you will. But I’m wondering, “Is this meant to be our natural state?” In other words are we born to a state of euphoria?  Is it only over time, through bitter experience or heartbreak or sin or ego or whatever-you-want-to-call-it, that we forget how good it feels to just be well and breathing?  Having spent weeks in pain I can tell you today that I believe that’s the case.  I believe our natural state, if we are well (clearing away accumulated mental, emotional, spiritual, physical junk), is to feel okay or better than okay…you know like euphoric.

Alright so the fact that I realize these things probably means that I need to buy one of those bumper stickers that suggest “miracles happen.” I’ll slap it proudly next to the newly stamped, custom license plate reading, “T.C.D.”

XOXO

Leland

PS.  We got our biopsies back from the doctors office today. Great news! Neither the pigmented ulcerous tissue nor the inflamed areas of my stomach are cancerous. This looks like a straight up GI problem. We still need to figure what’s causing the problem, but are relieved and grateful for this news.

P.S.S. If you have gastrointestinal issues and want to trade war stories or solutions let me know.  I’ve tried just about everything under the sun and am happy to exchange ideas.  Lately what works for me is slippery elm bark and marshmallow root (a revelation, you can google both) and smaller meals of mainly vegetables…I know sounds simply euphoric doesn’t it!

 

Diagnosed with cancer?

The following is recycled from an email I sent to a good friend of mine.  Its talking about possible suggestions of what to do if you or someone you love gets diagnosed with cancer. This by no means should be considered authoritative advise (if you need a refresher on my level of authority please visit the 98braintumor’s Disclaimer).

“At the end of the day” I believe each person should consult their doctors, medical professionals, friends and family and ultimately their own conscience, reason, faith and intuition.  Here are some ideas based on my experience with doing something like that and I hope it might be of use to you.

Take responsibility for your own health, even to the point of being a jerk 0-;. I found that there are doctors with big brains but little emotional intelligence.   A pet peeve is when they are afraid to admit they don’t have the answers, are completely obtuse about the emotional weight of information they are providing, or lack any real troubleshooting ability.  I’ve said to doctors before, “I’m okay with you taking a guess on what we should do.  Even a best guess would be okay.”  This speaks to my own experience in software engineering where there have been a few times, in dealing with a complex problem, someone had a hunch, couldn’t necessarily explain it all, but we arrived at a solution nevertheless by “stepping off the ledge” and just trying something on faith.  It was only after the fact that we understood the entire problem and solution space.

Its true as well, and perhaps a cliche, medical schools don’t appear to teach or have time for people skills. This is aggravated by a system which encourages a kind of fast food (Order Up!) mentality in which each patient must only get the allotted 5 min/32 sec/99 ms per visit in order for the doctor to pay his or her mortgage, staff and medical insurance.  Also, if you don’t like a doctor then find another one.  If you only get 5 minutes it might as well be a good 5. They are not gods, not even lesser ones even if their suits are hand tailored on Savile Row.  Second and even third opinions are good too.

I found a few studies on ncbi.com that talk about how survival rates were better for cancer patients who had bad relationships with their doctors.  From my experience this is because they don’t roll over and trust everything that their doctors say; they take initiative, ask the tough questions, don’t take “no” for an answer in some cases, and are in some ways are “a pain in the arse.”  Maybe even demanding of 6 min/44 sec/57 ms or something crazy and outlandish like that.  If you are not feeling well enough to be a thorn, or if that is not as Austin Power’s would say “your bag man,” get that friend or family member with a bull dog mentality to go with you.  Have them take notes too.

BTW ncbi is a good reference for published medical journals on different substances and their efficacy against cancers (both specific and non-specific). http://www.ncbi.nlm.nih.gov.  I’ve used it several times as a reference as well as to remind myself why I wasn’t a huge fan of Latin in high school.  You can also look at potential clinical trials and discuss these with the doctors.  Find trials at https://clinicaltrials.gov/

In general, stick with the big cities and big institutions if you have a life threatening condition.  Also try to find the specialists for a given illness.  There are many different types of cancer and, within each type, lots of variation.  The errant cells that constitute my particular version of melanoma, for instance, are not the same as Susan, Jeff’s, or anyone else.  The big cities and institutions (again I’m generalizing) attract the best doctors.  As a rule you will get the best care in these locations and, as indicated, when you seek out the ones focused solely on your disease.

Omid Hamid at The Angeles Clinic, my favorite all time doctor (no offense to anyone else, many of you have been da bomb), probably sees a couple hundred patients with melanoma per year.  A local, less specialized oncologist, might only see 1 or 2 people diagnosed with melanoma in an entire year.  So, think about it, would you rather have the guy who specializes in Ferrari’s at the Ferrari dealer fix your red F12berlinetta or would Earl at Roadkill’s Body Shop and Repair be better?  You may have to work for these relationships if you do not live by the big cities or if the expertise is in a different state or even country, but its worth it.  Finding the best can have dramatic differences in overall outcomes.

In that sense, I think about doctors the same way I think about software engineers (or any engineers).  Not all are created equal. I know this “anecdotally” (yeah that just happened I made up another word) from experience in industry.     The good SWEs can accomplish 5 or 10x more in 8 hours than the not-so-good-ones in 40 + Mountain Dew + doughnuts + overtime. There are lots of published statistics describing this condition as well.  IMO it’s the same with doctors.  You want the knowledgeable and learned, the trouble shooters and communicators with helpful attitudes and a passion for what they do.  Nerds rule by the way.

This includes investigating and seeking out alternative forms of medicine.  Controversial at best and again in the category of my own opinion, but I believe that there is more than one path towards healing and finding answers. I believe this not just because I’m like into groovy and spiritual stuff and like because I have spent thousands of hours simultaneously rotting and expanding my brain listening to the Grateful Dead. A trip around the internet suggests that there are lots of people out there offering different viewpoints and experiences.  Undoubtedly there are snake oil salesmen out there, pseudo science, crackpots etc.  But, there is also a whole world of people sharing their personal experiences. I think its equally “bad science” to summarily decide that all of it is no good because it doesn’t have a clinical trial and million dollar research grant associated with it. I think the scientific method and FDA are there for a reason and have brought tremendous good to the world.  But it isn’t everything IMO.  Nor is necessarily running off to central america to have your blood drained while hanging upside by your toenails, drinking a vegetable smoothie and listening to Bob Marley the Alpha and Omega either.  Again, controversy abides.  Thank God we are entitled to own opinions, for now.

Find the knowledgeable care-givers and/or patients that are running advocacy programs. Find out if there are online support groups or organizations interested in your specific cancer and ask them the questions…”is this treatment effective” or “is this doctor good?” “how do I deal with this side effect?” etc. I believe finding someone like this for me, in the case of melanoma, was one of the key factors that kept me alive in the beginning. I was able to make a much more informed decision when armed with the right information from someone who had been fighting the battle longer than me.  The real rub with all that though was that she was introduced to me by my Mom; thus proving Mom’s are always right. Dangit!

Don’t underestimate the power of nutrition and the role of the immune system in fighting cancer.  This is another controversial topic with the power to exercise my inbox.  Especially for lots of med professionals who think it’s a bunch of mumbo jumbo.  But if you step back and think about sayings like “garbage in garbage out” or just simply apply common sense, then the answers get clearer (for me anyways).  At the end of the day I turned to better nutrition because I was desperate and had nothing else to lose so perhaps its not really fair for me to offer my opinion on this subject.  Either way, it is a personal choice.  I decided that I might as well go out, if I was going to go, swinging as hard as I could for left field, turning over every rock and trying anything I could in the process.  There is lots of evidence that diet plays a role in cancer.  Three of the places in the world where cancer rates are as low as 1/3 the rate of US (Greece, Japan, and a community in California (I’m thinking Mormons)) have demonstrable high vegetable/low protein diets.

I am going on 5 years without any processed sugars or meat.  I did this after research that suggested sugar is one of cancer’s favorite meals because of its high metabolic rate as well as twisted processes.  I decided I was not going to give it an easy meal, ever.  I forego meat/sugar as part of the budwig diet (can also google).  Another controversial subject and not that easy to implement.  But, I was very encouraged by the hundreds of online testimonials that I read of people who did it and got well.

In my own experience I also saw dramatic results using this while doing immunotherapy (new kind of chemo with different emphasis than traditional therapies)…was doing blood work every week as part of clinical trial.  Within 1 week of starting the budwig diet my dangerous liver and kidney counts all returned to normal.  It was dramatic enough that the doctor asked me if I had still been doing treatment.

There are natural supplements that have been shown to fight cancer.  Some have even gone head to head with chemo therapies.  One that I use every day is turmeric with black pepper (I have @ 2 tablespoons a day with a touch of black pepper which helps increase its effects, prepared as a tea).  Turmeric contains curcumin which is the substance in curry, used heavily in Indian food (another place in world with low rates of cancer).

Confront the possibility of dying and deal with whatever needs dealing with now.  This was and is one of the hardest things for me to have to face.  But the link between emotions/well being and the immune system is also documented.  Connect with church and mental health professionals to work through any issues or problems.  As somebody said once “there are no real atheists in fox holes.”  Either way, I have found great comfort in exploring the subject of death and afterlife.  It’s amazing, when it happens, to realize how short life can really be and to stare down death.  Drove me whacky for awhile.  Again church helped.  The fellowship I attend helped.

Praying, reading and examining the subject of death helped as well.  I got a lot out of sites like IANDS site on near death experiences (read every single one as part of morning reading) as well as books like Eben Alexander’s Proof of Heaven.  Elizabeth Kubler Ross who wrote “On Death and Dying” also wrote On Life After Death, having researched something like 20k different near death experiences.  For me, just as with reading about people’s personal experiences with alternative medicine, these kinds of life experiences, where people are sharing their own thoughts and perceptions, were extremely helpful.  It wraps some skin around the theory and/or faith and belief.

Remember that statistics are not everything.  They can be a strong marker or indicator for various diagnosis, treatments etc but are not the end all be all.  There are so many complex factors that come into the treatment of a human condition (person’s age, relative health, diet, mental attitude etc).   So if you hear some dismal stats just remember that one size does not fit all.  In turn, you have to be careful what you choose to focus on.  Studies have also shown that the stats can be self-fulfilling prophecy…eg tell someone that they are going to live a month and they might just oblige and die exactly 30 days from now.  This underscores the need for mental toughness as well as support systems.  People that talk about their health with others formally or informally are also statistically shown to have a higher survival rate.

Don’t give up no matter what.  Another cliché but absolutely true.  I’ve had 98 brain tumors and am still alive three years later, after one grim diagnoses after another.  I’m not bragging (I hope) but have had cancer in brain, stomach, lungs, liver skin.  I’m still here though maybe not “all there.” I can’t blame cancer for that “not all there part”…goes in the category of pre-existing conditions.

Again, all of the above is based on my opinions and perceptions of what worked and didn’t work.  Its not comprehensive.  I forgot, for instance, to talk about how I like to smother myself in organic garlic butter and slither up trees in the backyard to watch the sunrise each morning while chanting the chandi path durge and whipping myself with a cat of nine tails (do I have to say ‘kidding’ here or did you think for a second that was true?).

Regardless I could be wrong about some things and I could be right others.  If you have cancer and are struggling, believe me I know, that’s maddening to hear.  We desperately want to know and have the answers, the timelines, and the proven results.  Are they there to be found?  Sometimes yes, sometime no.  I believe I’ve found a few ideas that work for me.  Don’t know if they are going to last another year or another ten years or more.  I’m certainly hoping and praying for the latter.

What I do know today, to my very core, is that these three are worth the price of exploration.

derek S&C S&D

Con and Der

 

 

Answers

I’m playing hooky from work for a few days this week.  Would like to tell you that I’m taking this time to devote to a series of productive and extremely manly honey-dos but, chances are and knowing me, most of that time will actually be spent committing honey don’ts or their wicked step cousins, oh-no-you-didn’ts.

Speaking of which, Elsa decided to take me for a run this morning. I guess she thought I needed it.  Didn’t sleep much last night and was feeling a bit, persnickety. Have been “dealing” with ulcers as a byproduct of previous immunotherapies as well as current keytruda regimen. It felt like I stopped by the grill in the backyard and swallowed a few hot coals on the way to bed.  Running usually helps relieve and/or remove the pain when I’m symptomatic. Waa-waa-waa.

So off we went to the Mt Herman Trailhead, which is a confusing name for the path that actually does not take you to the top of Mt Herman; rather meanders around its foothills through a dense pine forest, pond, and Monument Rock (picture). I usually do a loop that is basically uphill for the first half.

It was during the last bit of climbing that I ran into a couple of guys mountain biking.  They had stopped at the the “top” or the highest part of this particular route to catch their breath, grab some water, take in the view, or perhaps watch me, Thunder Cat, crawl his way to the top.

We struck up a conversation (they talked, I gasped) and because I’m kind of on a evangelistic tear right now I happened to mention, in reference to my breathing, “Yeah not too bad for a guy diagnosed with Stage IV terminal cancer and 98 brain tumors a few years ago…”

There’s probably – okay probably maybe certainly – an element of crow going on here.  Boasting or not, this is a story I feel the need to share these days.  Not sure I care to perform any further self examination on the subject beyond that, at the moment.

The thing is though, if I’m going to take the talk from run-of-the-mill, trail based pleasantries like ‘ha ya doin’ and ‘beautiful day isn’t it’ or even ‘that last part kind of sucked,’ to deeper topics of cancer and survival, then I better be prepared for heavier caliber conversation.

“Mind if I ask how your relationship with God is?”  One the guys asked.

My instant reaction was to think, ‘Huh? I don’t know.’ 

But that’s not really how you are supposed to respond in that situation right?  Not when you have been sober 24 years and regularly swear in a room full of your peers, “it’s only by the grace of God”; or faced with a life threatening illness find yourself alive and saying, “Thanks be to God.”

So instead, I answered the question by not answering the question, “Well, I go to church…”

The truth is, in relation to my belief, some days are better than others.  There are a lot of moments when I feel the opposite of “sure” about anything. I’m barely making it up the trail let alone feeling confident about life, God, me, you, us, them, the Cubs chances this year…

Here I can hear the gruff voices of a few old guys with the inflated spare tires around their waists (aka “boomer bellies”) and steaming Styrofoam cups of coffee in their hands.  Their talking to me in cliches, derivatives of,

“The older you get the more you realize how little you know.”

Or,

“The only thing I know is that I know only a little.”

And I relate.

Oh well, guess it could be worse.  Perhaps the fact that these statements ring true- combined with my own expanding waist line – means I’m getting older.  Older = good. (-;

PS. Elsa was not working on ulcers but she definitely succeeded in wearing herself out.

Worn out

Or maybe it was the after breakfast snack she had on the trail?

Outed on Facebook

Well, some things never change I guess.  My brother broke, I mean, got wind of this little project and he told on me, again, to my Mommy no less and to Facebook.

In my typical nerdy and some would say “controlling” way (only the jealous ones say that though), I’ve been hacking away for the last couple of weeks, keeping 98braintumors super top secret (except for like registering the public domain, adding a few posts etc).

Though I have to say it did get a bit creepy the other night when 15-20 “people” registered their “usernames” here.  I wondered if my SEO (search engine optimizations) were really that good?  Had I applied the right tags, using the right words, to my few meager posts?  Was adding my xml based site map to “The Google” so effective as to bring legions of new subscribers to my door? Er, no.

Turns out it was Boris or Sven or somebody’s web crawling software who found my site and auto-registered so that – I assume – they could start serving spam to the universe.

So, if your spam filter recently picked up email from 43bigfool1@98braintumors.com or buttaholla2020g@98braintumors.com offering “Free Russian Brides” or “The Diet Pill that Dunkin Doughnuts Doesn’t Want You to Know About…” it wasn’t me (btw the bots are no longer allowed to register and their suspect usernames have been purged).

The “truth is” I probably would still be hacking a year from now if the Gibster/my brother hadn’t ratted me out.    So thanks G, thanks a lot man, now there’s like 10 people that know about this.  Anyways, if you are here, welcome and thanks for reading.  I hope my story is of use to you.

xoxoxoxoxo

Leland

PS. I added a photo album tonight (should be on menu bar, entitled “Pics”) and, of all things, a few pictures.  So now you know I’m actually a real person, my name isn’t  43bigfool1 or buttaholla2020g and, at least for the moment, there are no Russian beauties or snake oils sold at bargain basement prices here.

Energy and Exhaustion

Grateful for Busy Weekends

Last weekend I coached two hockey games and a practice, ran 3 miles in the mountains with my dog Elsa, lifted weights, did one of Shaun T’s “Max Out 30” videos (with window shades tightly drawn in living room, chasing away images of 80’s era Jane Fondas in purple spandex and candy-cane-striped-leggings doing squats across the back of my eyelids), worked on this blog, threw the football for my two boys for a couple of hours, bounced on the trampoline with them, mowed the backyard, helped my wife in entertaining @ 25 people from our church Saturday night,  and hit our bible study Sunday (another minor miracle)…not too bad for a guy diagnosed with Stage IV melanoma and who, for most of my life, has struggled with some serious fatigue issues.

Hopefully that last paragraph is not in poor taste or comes off as arrogant or boastful.  The purpose of www.98brainturmors.com is to offer people with cancer, even a terrible prognosis like mine, hope. I’m grateful for the ability to be a part of weekends such as these. While I can’t predict what the future holds for myself or anyone else for that matter, it’s been a gift to go from a six week prognosis to three more years with friends and family!

Even before I was diagnosed with Stage IV melanoma, I struggled mightily with feeling tired.  I remember, especially after my kids were born, feeling so tired it physically hurt, despite a near constant infusion of coffee on a fast drip.  Our good buddy Scotty pretty much summarized how I felt for an eternity…um, since childhood. I wondered if it would ever end.

From http://blogs.emulex.com/lenovo/files/2014/12/scotty.jpg

Things to try if you are feeling tired

Why am I writing about this? What’s changed?  I can tell you that I got much more serious about energy, or my lack thereof, once I got sick.  I can also tell you that, at least for me, this problem was not “solved” overnight.

“Solved” is tagged in quotes because this is still something I struggle with…though, as mentioned, I feel like it has significantly improved over the last few years.  I think, in most cases, the answer to the energy/exhaustion problem will defy a headlong assault, is more complicated than just finding a single cause (at least in my case) and is not something I could wake up one morning and give myself a good Foghorn Leghorn talking to, “Boy I say-I say I do declare today you shall have more energy.”

But here are some things I did, either intentionally or by stumbling my way into them, over the course of treatment.  Again this is, as with anything on this site, not medical advice.

Get worked up

Got a complete workup of labs (blood work) done by doctor as well as medical practitioner.  Had them review the whole thing and see if there were any deficiencies.

Note that I’m not anti-doctor by any means, but I have noticed a tendency, at least with some of the doctors I have seen, to either discard or downplay vitamin and mineral deficiencies. I’m not sure if this was my lack of assertiveness in stating the problem, their busy schedule/time allotted for me (or both), or as the more paranoid among us might suggest their over-reliance on the western medical doctrine and practice…pick your poison.

I would recommend making it known if you are really struggling that you need help, that it might take more than one test or course of action, and you would hope that he/she will help you resolve this problem. Given this kind of sincere plea for assistance, they should roll up the sleeves.  If they don’t, exercise your right to find someone that will.  This is what I did. In my case, after some serious whining/asserting myself and a change in doctors, I got worked up.

Vitamin D

One of the things we found was a serious vitamin D deficiency.  This is pretty common for people in general and not just cancer patients.  BTW…this is a little curious for over baked, extra crispy melanoma suffer like myself don’t you think? 0-;

You can google for studies, anecdotal evidence, rants, and pseudo-science about the role of V-D and cancer. I’ve been taking 5,000 IU/day of Vitamin D-3 for a few years now.  I also don’t – against what many people advise – necessarily avoid the sun.  We need it for V-D as well.

I vant to check your blood

Another thing that occurred over the last few years is that I gradually became more and more anemic (had a reducing red blood cell count) and iron deficient. Here I was told it would be good to rule out internal bleeding; that sometimes bleeding lesions or tumors don’t show up on the normal C-T/PET scans.

That equated to an endoscopy or check down esophagus, stomach and small intestine as well a journey, um, through the other “end.” In both cases I was found to be free and clear – no lesions and no vampires hiding out in plumbing (seems to be a Sesame Street thing going on here now…guess that’s about right/my level).

What did happen as a result of the anemia was I started taking an iron supplement (there are various ‘blood building’ supplements at health food store) as well as B complex.

I have to say, of all the things mentioned here, the blood builder and B complex combo seems to have given me the most jump; even during that 3 o’clock – oh Lord why can’t we practice the art of the siesta in this country – hour, I rarely feel the need to crash out anymore.

Thyroid Disorders

Got my thyroid checked. This is something I believe anybody that is receiving immunotherapy should have regularly monitored. I can’t say for sure if my thyroid was always messed up (to use medical terminology), but I can tell you after a full course of yervoy, I finally had mine looked at…and it was bad, as in out of whack, as in essentially not working.

Okay, guilty as charged, I don’t have a copy of the labs. The University of Colorado app I use that has previous medical records doesn’t have it listed in there for whatever reason. Sometime in 2013 we figured out that my Tsh level had a value of like 190 where normal ranges are @.45 -4.680.

Needless to say I remember feeling a bit “put out” at the time. Just tying my shoes or, heaven forbid, hanging a towel instead of tossing on floor seemed like a major ordeal. My wife now thanks the decision to treat my thyroid accordingly and the towels generally smell better, longer as a result.

In relation to melanoma and thyroid, a particular paper written by Jacob Schor comes to mind.  Schor cites studies which appeared to show Tsh as a growth factor for melanoma. Its an interesting read, as all Dr. Schor’s writings are, in case you are interested- melanoma and thyroid.

Diet

Okay is there some cruel irony that the word “die” is embedded in diet? I could spend a lot of time writing about this but I won’t. There’s plenty of passionate debate around this subject everywhere…just know that I haven’t eaten any meat or had any processed or refined sugar (that I know of or willfully/sometimes these things are embedded in restaurant food or prepared meals) in three years. NONE nada nawching.

People often ask me, “how do you do it?” and I always say it was relatively easy.  Despite a serious, bordering on professional appreciation for The Immortal Cheeseburger and all things greasy, meaty, cheesy, salty, fatty, sugary etc.

Every time I feel the need to exercise my addiction I think about my boys, my wife, 98 brain tumors, tumors in the lungs, stomach, liver …along with a mountain of anecdotal and scientific studies “out there” that suggest reducing or eliminating both might help me live a little while longer…and if and when I find myself in the afterlife, I’m hitting Red Robin, hold the lettuce and tomato.

Pray

I finally remembered to pray about exhaustion. For those of you that make a habit of prayer already you may be able to relate to the fact that there are times where you/I can struggle with something for years and seem to make no progress.

Then I suddenly realize something important and say to myself (out loud in the car, with people looking strangely at me at which time I pretend to be talking on phone or maybe totally throw them off with a good pick of nose), “Ah, maybe I should pray about this?”

In the back my mind, tucked behind Jane Fonda doing her leg lifts, I can then hear Curly Howard (Larry, Moe and Curly) saying, “Nyuck, Nyuck, Nyuck…ah wise guy!”

Prayer is the most unscientific-scientific thing that I’ve done/do of all the ideas mentioned above. In my case, unfailingly, whenever I do this and try to combine it with an open mind things work out…even energy problems, bad blood or vitamin deficiencies. It just happens, it has no real logical explanation, taunts the ever loving engineer out of me, but just is. As a book I’ve read a few times says, “It works, it really does.”

Final Thoughts

Yep I’ve had the “luxury” of thinking, “What the hay man, might as well throw the kitchen sink and everything else at this, can’t hurt.”  This afforded me every excuse and lots of motivation to try different things.  I could, in fact, write even more about what I have done “wrong” or what didn’t work for my exhaustion.

But the disadvantage, of-course, of throwing the kitchen sink at a problem is I can’t pinpoint one clear cause/effect relationship that led to my being less exhausted. Either way I hope that some or all of the above might help you dig through your own experience and find answers to your struggles with energy and exhaustion.

Oh and full disclosure…I did take a glorious, Leland-pleasing nap last Sunday afternoon even though I didn’t absolutely have to…there’s nothing I quite enjoy more than a snooze on the couch by the fireplace, listening to the boys and Sarah play “Monopoly” or “Clue.” (-;