With less than a week to go before my surgery, I wanted to explore the world of symptoms, and how they become interwoven in every aspect of my life. To do this I had to decide on an appropriate analogy from which to examine what has become an integral part of my daily life for the past several months.
NOTE: Some parts of this story may get a bit 'icky' as I explore my symptoms and how I deal with them.
When I talk to people about my condition, or about other people they know who have survived the 'cancer experience' what comes to mind - or at least what comes FROM the minds of 'others' - the ones who know the survivor, is that we are some kind of 'heroes' for having survived. That is a lot of pressure to deal with.
Of all the things I felt the first time around, considering myself a 'hero' was simply not on the list. Did I consider myself a fighter? Yes. Did I consider myself damn lucky? Yes. Did my experience make me appreciate the people around me? Yes. But SUPERHERO? That is just too much.
Fast forward 20 years, and now things are a bit different. Now I see my position as a 'cancer-fighting-superhero' from a more external perspective. I now have not only a wife (as I did then too) but I have two kids, one entering the most confusing part of his life -adolescence- who DOES see me as Dad-The-Superhero, the other is embarking on 'adulthood' who needs me to be there in different ways. My wife still needs me, as we grow together, watch out kids grow and look forward to what we HOPE will be many, many golden-years.
And, beyond my 'blood-family' I am still very connected to the many, many students I worked with in my previous job, who in some ways at least I have become a surrogate Dad, Mentor, Friend, Uncle, confidant... And I see that the efforts I make to fight this thing may (I hope) help them in someway, maybe not now, but in the future.
Finally, during the final two years of my tenure I got to know one of the iconic teachers at our school, who lost her battle with brain-cancer, very well. She and I discussed many times the affect that our fight to hold onto life in the best way possible was more important to the people around us than our own singular existence. "The needs of the many, outweigh the needs of the one." - a quote that she and I both loved from Star Trek, a show we both enjoyed.
Considering all of this, I was watching (again) the movie 'Kill Bill Vol. 2'. Before his demise, Bill delivers a speech where he discuses the nature of the Superhero, and how, Superman (not my favorite, but the story is still great here) is the only one who was born a superhero. In my case I was born with the genetic predisposition to develop cancer. In effect there was nothing either one of us could do about our situation. Superman arrived on Earth as an outsider, different from regular humans. Cancer patients, like wise are different from 'regular humans'. Like a Superhero (sadly, without superpowers) my experience is 'life-changing'.
Let's look at Bill's speech:
Bill: An essential characteristic of the superhero mythology is, there's the superhero, and there's the alter ego. Batman is actually Bruce Wayne, Spider-Man is actually Peter Parker. When he wakes up in the morning, he's Peter Parker. He has to put on a costume to become Spider-Man...
For the 'regular' superheros they get to DECIDE to do what they do. They get to DECIDE when and where they 'become' the superhero. In effect, they get to stack the proverbial deck in their favor. They can ignore a call for help, ignore a plea for assistance. And in some way they are 'enhanced' through gizmos, gadgets, or happy accidents that make them 'super'. While they struggle at times to come to grips with their new identities - masked alter-egos. In the end theirs is a CHOICE. They can 'hang-up-the-cape' when ever they want.
Bill:...And it is in that characteristic that Superman stands alone. Superman did not become Superman, Superman was born Superman. When Superman wakes up in the morning, he's Superman...
Again, I want to repeat, I am not arrogant enough to consider myself 'super' or a 'superhero' but roll with me in the analogy. We are all born with a set of genes that we inherit from our parents. This is simple biological fact. We cannot change the package we start with. That package, like it or not determines how our physical bodies will develop, respond and react to anything that it encounters. Science has come along way in mapping out these packages for us - giving us markers, warning signs, predictors and chances of what might be. So, in this case YES I am LIKE Superman. My package is unique, I cannot change it, but with help (medical and other) I can DEAL with it. So much as in the first appearance of a Superhero, the birth of 'Captain Cancer' showed up one day with a streak of red in the toilet.
Bill:...His alter ego is Clark Kent...His outfit with the big red "S", that's the blanket he was wrapped in as a baby when the Kents found him. Those are his clothes. What Kent wears, the glasses, the business suit, that's the costume. That's the costume Superman wears to blend in with us...
Is my 'alter-ego' Scott Lightfoot - Security Technician by day - Captain Cancer at all other times? In these past few months I have tried at first to ignore the symptoms (the calling to become once again, Captain Cancer), eventually I consulted my 'oracles-of-science' who basically revealed to me that I have no CHOICE but to once again, fulfill my destiny of Captain Cancer.
So, in order to begin fighting this new battle I have to wear - under my clothes - hidden from the world, my special, uh, protective undergarments, so that 'evidence' of my symptoms shall not be unnecessarily 'revealed' to the public. Simply, the first part of my costume I don every day now is a pair of frickin' depends... "Protective undergarments for 'active-adults'" - you gotta love advertising...
So I stand there, in my steamy bathroom, showered, cleanly shaven, hair neatly coiffed (no Clark Kent swirl for me -- spiked hair baby!) Putting on my best tough man face, I reach ever so deftly for the package of depends... I free one from the package with all the deftness of 'Bruce Lee' --- Hooo WAH! Stretch them out, try to jump into them with as much cool as possible... of course that leads me to catching my foot on the elastic and falling sidways into the bathroom wall... I try to recover my cool, but all I can do is stand there, one leg in one leg out and looking in the mirror, laugh at myself.
The second effort goes better... now I am standing there, trying to flex/pose superhero fashion and realize I look more like some kind of emaciated sumo-wrestler than ANY kind of Superhero... I avoid reaching into the cabinet to fish out a red lipstick from my wife's cosmetic bag to draw a big red 'C' on my chest. Instead, I return to my room, my bathrobe 'concealing' my Superhero costume, I then dress in the rest of my 'public' costume long-underwear to battle the cold, pressed blue uniform pants. neatly buttoned and tucked company shirt, crisp company hat, pen and pen-light in my pocket, company ID (reading Scott Lightfoot - Technician, my alter-ego) and off to work I go.... Ah, but the adventure is not over...
Bill:...Clark Kent is how Superman views us. And what are the characteristics of Clark Kent? He's weak, he's unsure of himself... he's a coward. Clark Kent is Superman's critique on the whole human race.
Every Superhero has an arch enemy. For Captain Cancer his enemy is a multi-faced villain who can appear in many forms. With Captain Cancer now deftly tucked away, together we have to face the growing strength of 'Symptom Man'. My daily battle against Symptom Man begins shortly after the alarm rings in the morning... He attacks before Captain Cancer is properly garbed (see above!). I, Scott Lightfoot - Technician, must come flying out of the bed, race through the dark - being careful not to disturb either my sleeping wife or the stupid ass cat who sleeps on my chest - if I am fortunate I reach the toilet - keeping Symptom Man from, uh, making my morning messy. Successful in this initial battle, I shower (attempt!) to dress in the costume of Captain Cancer, and make my way to work. Dressed, tucked and ready to face the day of Scott Lightfoot - Technician.
The battle between Captain Cancer and Symptom Man continues. Every time I change position - get into my van, get out of my van, pull a heavy ladder out of my van, climb into a lift - Symptom Man attacks.... Captain Cancer battles with extra, uh, 'clinching', slower, more thoughtful movement - running is OUT for certain. My 'special-under-garments' provide protection from the moments when Symptom Man wins the occasional fight - leaving 'evidence' of a successful attack - like a bloodied lip in a fist fight. Captain Cancer and Symptom Man repeat this parrying throughout the day. All the while as Scott Lightfoot - Technician I do my best to hide the battle that is going on inside my battle - and sometimes in my pants...
I have never in my life worked so hard to 'schedule' things like bathroom visits or the need to 'pass-gas', another neat trick used by Symptom Man - because sometimes - unpredictably it is not gas that gets passed, at that point I have to make quick excuse to hustle (not run) to the nearest bathroom. Imagine how difficult THIS is when I am 30' up in a lift, in the blowing snow, and beside taking about a full excruciating minute to get to ground level, I have to then 'tuck-walk' a good 500 yards through the mud to the nearest restroom. Oh... the adventure does not end there...
Once I get to my 'Fortress of Solitude' I THEN have to disrobe... five layers of protective clothing, zippers, buttons, belts, snaps and the like before I can FINALLY sit down and have some modicum of relief from Symptom Man's attack...
On a good day I can get by with hopefully 'unnoticed' trips to the restroom... morning breaks (thanks union people for those), lunch (we usually get an hour), afternoon breaks, final clean up at the end of the day before going home. On a bad day, I find that I am running of excuses for restroom breaks.
This battle requires support. One technique that Cancer Man and I use is our 'web-of-support'. Out of necessity, I have informed a cadre of people who, by knowing what I am going through, can not only better understand my sudden 'needs' or the necessity to change plans, but can provide the support when needed. So far, I have been very lucky that Cancer Man has many allies in my battle.
The good news is that next week Symptom Man will be mostly defeated. Attacked, removed, tossed in a bucket by Cancer Man's Science Team... At that point there will be new battles for Cancer Man to fight... He must recover from the ordeals of the operation in order to battle with 'The Cancer That Remains' with the help of Cancer Man's side-kick 'Chemo-Man'....
The Adventure Continues.....
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