It seems like only yesterday, I was wittingly composing a v2.0 announcement post on facebook, heralding the birth of my first child. That was a decade ago now. As a software engineer, I likened the situation to my professional experience and, i.e. software revisions, it seemed acutely relatable that my offspring were akin to next generation version of myself. A proud moment for me, full of dreams, anticipation, and life. Similarly, 3 years later I held my son for the first time, full of expectation and wonder. In those days, it never once occurred to me that I might not see my children through their formative years. The mere possibility that my ongoing effort to squash bugs, align function and utility, and refine them into the very best versions of themselves could be terminated prematurely, was completely unfathomable. Sure, there would be challenges; bumps and kinks along the way. But that would become my mission. To chronicle and log all anomalies and work tirelessly to find workarounds. I have always approached engineering challenges with tenacity and an unrelenting focus. And I intended to become the very best Dad that I could possibly be.
And I was. Over the past decade, I’ve been lucky enough to experience the privilege of seeing some of the best qualities of being human, blossom and emerge in both of my children. As well as in their Mother. Some Moms are born to mother. Others discover that along the way. And I’ve come to understand that the latter holds just as much virtue. As I write this, we are in the middle of global pandemic. And my childhood sweetheart, the mother of my children; is homeschooling at the kitchen table, while maintaining her job working remotely, as well as keeping the laundry, dishes, and children washed, managing doctors, hospitals, meal-train and fundraising, all while emotionally supporting me through the worst possible circumstances that could ever have occurred. I am privileged, I am grateful, and I am impressed.
None of this makes any sense at all. Strangely, I still can’t get my logical brain to accept the reality of the situation, even though I know the facts. We live healthy. We exercise regularly, get plenty of sunshine and fresh air. We buy natural and organic foods. Eat plenty of fruits and vegetables. Ever since I was a kid I’ve always eaten my vegetables. In fact, I was raised on a health food diet. And I’ve carried that habit into adulthood, with reason and moderation. Additionally, I strength train with free weights habitually, as I’ve done since high-school. And we generally live a reasonably low stress life (as low stress as any 2 parents with 2 kids and 2 jobs can). And yet, lately, I find myself continually reminding myself of this:
the universe is under no obligation to make sense to anyone…
Its so easy for me to fall back on a sentiment that precludes that this could be happening. I made good choices. Right? Certainly there are those who take far worse care of their health.
Nonetheless, at a mere 45 years old, I became a victim of cancer. The Emperor of all Maladies… The title of a book on the subject written a decade ago by Siddhartha Mukherjee. An exceptionally accurate characterization. And not just any cancer, I have a relatively aggressive form. In less than 2 months; from identification - to biopsy - to results - to treatment plan, I went from a minor stage 1 to a serious stage 3 teetering on 4. In that time, I’ve lived through emotional hell, as every imaginable fear seated deep within my psyche has materialized into a dark shadow haunting my every step.
My wife, in an effort to bring light to the situation jokingly mused, “You just don’t do anything half-assed, do you”. And so I guess that’s true of my disease acquisition as well. I guess nobody gets illnesses as good as I do. Winning!!! I get 3–6 months, possibly, to wrap things up and finish out my projects. In software, we colloquially refer to this scenario as EOL (End-Of-Life). And it is a predetermined date after-which said software is written off, no longer supported, and expected to no longer function. It is a common practice in iterative software life-cycles. Generally intended to give rise to and stimulate the inception and adoption of next generation software. Superseding and improving upon the efficiency, intuitiveness, utility and function of its predecessor.
I take solace in the knowledge that I have my v2.0’s, my offspring. Although, they’re certainly not ready for production, and I have unfinished plans for their development. Perhaps, I’ve supplanted enough core logic that they will gain the remaining ground on their own. I cringe at the thought of leaving their mother to handle 2 children through puberty alone. And shoulder the rest of life without my contribution would surely be too much. Its not fair to her, or the children. But then, again…
the universe is under no obligation to be fair or compassionate to anyone…
In my circumstance, its nearly impossible not to search for blame in myself. To hunt for some kind of flaw, overlooked, that must be the root cause of my disease. What mistake did I make that precipitated such an untimely disruption in my plans. And yet all there is, is the lonely dark emptiness of an unsolvable question. There is nothing that science can point to and say, “THAT thing! Clearly that foolish thing you did caused this”. So, unfortunately, neither I nor anyone else can offer any kind of sane rational explanation, to my wife and/or my children. And that is one of the hardest bits to digest, for everyone involved.
I do have a treatment plan. With with a huge sticker price and relatively good odds of success. But I’ve never had much luck playing the odds. Clearly, my odds of getting cancer were some of the lowest achievable. What could give me confidence that my relatively good odds of surviving it wouldn’t fail me too. Engineers really don’t like uncertainty. We need data, tests, experimental proof. As such, medical science (human being engineers), has spent literally hundreds of years and literally trillions of dollars “solving” the problem of cancer. And yet the best we have in 2020 is decent odds. I’m left with choosing between an assortment of bad options, hoping to circumvent a terrible outcome, with something slightly less-bad. But without intervention, this is technically my EOL. This is all the universe, fate, and/or my choices gave me. Roughly 16,000 days. Something is wrong with this picture.
I hold no credence to the metaphysical. I’ve never been much of a “believer”. In fact I’m no kind of a believer at all. And I consider the words “faith” and “belief” somewhat of a cause for concern. So I take solace in few things; save the here and now (and possibly some of the then that I personally experienced). The moments I’ve had, are all that I have to hang on to. And I can only consider the vast unlikely-hood that I am, is, and was; profound… And a thing, in and to myself, worth cherishing.
And I guess that’s how it should be…
Used 16,428/16,608 Days
We were without health insurance when this happened. So were funding treatment out of our own pocket. We’ve set this up to take donations for anyone who is willing. https://www.mealtrain.com/trains/okn0l4/donate
If anyone is interested we are selling shirts to raise money and show our support for Joel. $20.00 for adult sizes and $15.00 for kids. To purchase, let us know the quantity and sizes. https://forms.gle/ep4y5ytaPt1bSnDf9