The same lessons that kept Leland Fey alive will improve anyone’s quality of living, especially the first one.
Three years ago I was tearing up the internet searching for information about melanoma. It was at Thanksgiving of 2012 and we’d just gotten my teeth knocked out, again. The cancer that began on my scalp had crept below the surface to the lymph nodes, liver, stomach and lungs and then into my brain. At the time we were staring at 44 lesions (or tumors) in a series of images of my brain; that number would later more than double.
My doctor cried when he gave me the news.
What he didn’t say was, “You have six weeks to live.” He didn’t have to, I already knew the stats and they were not good. That’s why I was crying too. I mean I had an internet connection and half a cranium (though my wife might argue the latter point 0-;). I knew what this would, in all likelihood, mean for me and my family.
Anyways, that experience with melanoma and cancer care in the context of this vast, information rich (and poor) WWW is why I decided to share my story at www.98braintumors.com. More than anything I wanted people to know if they were ‘out here’ scouring the internet for themselves or someone else that I’m still here three years later. My wish is that knowing that I’m still topside and fairly normal (emphasis on fairly) might provide hope.
In addition, I’d like to share a few things that have been important to me along the way.
#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 zero 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 conscious 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 was required.
Our society maintains a certain mystique 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 research was a net gain. I read everything. I made bad decisions as a result; but I made some right ones.
Buckminster Fuller created the “Knowledge Doubling Curve” when he noted that until 1900 knowledge doubled approximately every century. By World War II knowledge was doubling every 25 years. Today human knowledge is doubling every 13 months. According to IBM, the “internet of things” will lead to the doubling of knowledge every 12 hours.
The POINT is growth does not necessarily equate to quality. Hey I just used some statistics, with a rather dubious amount of citation. That is happening all the time. Search, but carefully.
#4 — What really matters?
I know now that I’m not going to look back and “wish I would have spent more time in meetings.” I have lived that. When I got the initial news I wanted my wife and kids.
#5 — Hamburger, shakes, and fries be damned.
I was a self-confessed chronic cheeseburger obsessed aficionado-addict-aholic. After reading lots of anecdotal, personal experiences of people who radically changed diets and received ‘spontaneous remissions’ (someone survives cancer without 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 – I get that – but if I do I did everything in my power to punch back.
#6 — I’m no terminal super hero.
What’s that Queen Latifa movie where she has a brain tumor and goes out and lives her life to the fullest? Pah! Or the myth (maybe it’s not a myth I don’t know) about people receiving death sentences and subsequently shooting rainbows out fingertips (and, um, nether/posterior regions?) Yeah … I didn’t get struck perfect. Just ask my friends, wife or kids about me and my un-rainbows.
#7 — Know thy life insurance.
It’s beyond 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 advise anyone that can do this now – find out the terms of your life insurance. I recommend getting a policy not directly tied to your job.
#8 — Be kind and assertive.
Those principles are sometimes mutually exclusive, especially when dealing with insurance companies. You have to be ready to fight for treatment options and care. But it does no good to do it angry. It’s not that there is some master malevolent plan. But, as with any corporation or human system, there’s gonna be frailty, inconsistency, and just plain trouble. I got great care, but had to work to get there.
#9 — Euphoria = no pain.
Ask anyone who suffers from chronic pain, I realized after having treatment-induced acute, chronic pain 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 modern uses which have more to do with all night “raves” under the blinking lights in Borneo. But it’s true.
#10 — Death to death.
I’m Christian, raised Catholic but practicing Lutheran (God rest Grandma’s soul, sorry Father S., Mom), but am also “blessed” with a constant cycling brain and engineering background. What helped me was to read about near death experiences as well as read 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 and ideas to be more encouraging sometimes than abstract statements about what happens next.
So I could go on with maybe like, um, 87 more things this experience has taught me. But they are bound to soon devolve into nonsensical things like poop jokes cuz I have two young boys and everything, at this point, gets there eventually. Anyways, I hope these notes are helpful or informative for you. If you would like to follow along with me as I battle cancer please visit www.98brainturmors.com.
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