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The Teddy Roosevelt School of Rehab Revisited: The Way of the Survivor

[ADDENDUM 8:56 EDT: Many thanks to PeregrineKate and the good people of the Monday Night Cancer Club for bringing their discussion over here -- looking forward to it!]

A few words on this last day of Childhood Cancer Awareness Month. Possibly more than a few.

The further away I get from the time my son’s cancer was eradicated, some time after he was two, the more clearly I can see it. The oozing inner decay, greed and selfishness given form, the anti-sun dragging everything in its orbit, spirally tendrils consuming all in its path.

It wasn’t always that way. You don’t think of it that way when it’s happening, or at least I didn’t. It was too immediate, no room for abstractions. Rapidly growing tumor originating on the adrenal gland, eleven centimeters on the rear anterior, seventeen centers height, seventeen centimeters in width. It was not a metaphor; it was a thing on an MRI screen so thoroughly consuming an abdomen and squeezing out the organs that I couldn't conceive how a human being could have those readings and still be alive. And before long, it was going to kill my son.

I was asked recently, by a friend going through their own crisis, how I dealt with the encroaching inner darkness throughout the trials. I respected the question so I gave it the full true answer I don't usually give, which is very long but boils down to "through sheer stubbornness and a personal philosophy cobbled together from Doctor Who and a lifetime of comic books."

But if I had to boil it down into even more practical phrasing, it would be the words of the great swordsman Musashi: The way of the warrior is resolute acceptance of death.

Accept. Not an easy word for me. I don't like to accept – it feels too much like giving up. And I am by default a person who tends to look at the world and demands things be different, and to hell with the world if it feels differently. A nice philosophy for a college kid. Not so easy to deny reality and substitute your own when reality is barreling down with twenty eight hundred cubic centimeters of self reproducing death trained on your son’s abdomen.  

To accept became not a matter of giving up but of acknowledging the way things are, to embrace reality no matter how horrific, and in doing so, position yourself for the possibility of change. To accept death is to not fear death. Musashi understood that fear kills just as surely as the enemy. It's not so different with cancer. Chemotherapy is a fearsome thing that brings its own risks, and it takes unshakeable nerves to confront it.

Death was a constant companion. It probably helps that my wife and I are natural alarmists, lifelong gothic types with lunatic romanticized notions of death inspired by Tim Burton movies. It didn’t make us any more mature, quite the opposite, but it made things a touch more familiar when death moved in as an unwelcome long-term houseguest. When you know death is right there, ready to spring at any time, it is less a medical procedure and more a rescue mission. Which brings an amazing amount of focus.

Being an alarmist helped in ways I would not have expected. It turns out that when you’re so edgy and nervous that a late electric bill feels like the end of the world, you’re pretty well focused and mentally prepared when the end of the world actually comes. I have a clear memory of being a moody, broody teen with an overdeveloped sense of drama and “Don’t Fear the Reaper” on constant repeat on the CD player. Impending doom? I can DO impending doom.

About the cancer and this treatment much has been written, which I won't dwell on here. Suffice to say that he survived, astonishingly, in the wake of several rounds of chemo, several operations, more infections than I can count, a stem cell transplant, dozens of blasts of radiation and an anti body treatment so experimental I half suspect the people who invented it barely dun stand how it works. The price: nearly two thirds of his hearing,  the return of clubfoot from infancy, eighteen months of lost physical and mental development, large chunks of his attention span and a body that was literally rebooted from scratch.

An unexpected complication. It turns out that when you live months on the edge fighting for survival, pivoting back to reality is not as easy as it sounds. Living is not the same as surviving,  especially when the fact of everyday living is so much harder than it was before. But in that, as with the treatment itself, our son turns out to be the secret weapon in ways we did not expect.

Rebuilding is the path we walk still. The Teddy Roosevelt School of Physical Rehabilitation, of which I discussed in depth at this diary.

Archery and horseback riding were foremost the last time I wrote about this. Since then it’s gotten … somewhat more interesting. His three-year-old sister is in on the act. (More about her some other time.) He’s gotten better at both, on those occasions he chooses to pay attention. His skill at archery is directly proportional to the extent to which I let him indulge in Hawkeye/Legolas-style antics at any given time. (It’s annoying enough he wants to bank shots off the floor. More irritating still that he’s actually quite good at it! Flat-out magic, that kid.)

Myself, as discussed in the link above, I’m vastly more fit as a result of following his example. I run five, six miles most morning, and thirteen on Saturdays. And lately he’s begun to insist on accompanying me on Sunday mornings, and we log five or six miles together. Not quite as fast, mind you, but he still walk/runs/hops for four hours down the White River and still has energy to spare.

And lately we’ve added obstacle running into the mix. He delights in making his way through waist-deep water if I let him. Hills, climbing, rock scrambles, the works. I take him indoor rock-wall climbing and he scoots 20 feet up as if it’s nothing. Maybe for him it IS nothing. Not long ago we did the Patriot Challenge together – an all-ages obstacle run that he thought was great fun and has been asking to do again. He'd do it every week if he could. I imagine we’ll be getting very muddy in the next year.

Mind you, he’s surprisingly adept at maneuvering through tough situations. Improvising his way through tight spots has always been a thing for him. Numerous people at the Patriot Run remarked on how well he seemed to be doing, even before they knew he was two-thirds deaf and doing the whole thing in leg braces. A couple of weeks before, I ran a more advanced grown-ups-only obstacle race, but to be honest, I’m perfectly certain he could have made it past all the obstacles at that one except the monkey bars.
I shouldn’t be surprised. The most wildly invasive surgery of his life was a four-hour cancer resection that saw most of his entrails temporarily becoming extrails while doctors scraped away every last bit of remaining tumor. The scar runs half the width of his abdomen. Five days later he was running up and rolling down hills and laughing all the way. When we told his doctors about it they just shrugged and said kids have a way of bouncing back. No kidding.

I don't know how he does it. (His favorite superhero is the Hulk. I take endless amusement from the fact his radiation treatments included actual gamma radiation.) He doesn’t care about impediments, or braces, or whatever limitations his body seems to place at any given time. He wants to DO. He wants to live, not just survive. He knows his limitations and remains intent on sailing past them at any given time.

So once again, I find myself following my son’s example. It turns out that the road back past survival and into something new really is summed up that simply.

I see him as so strong now. When I think of the cancer, it is in the past tense – even though the last vestiges of the tumor remain, probably always will remain, held at bay by the antibody treatments. But I no longer think of his body as a place dark things dwell to devour the innocent. He is a battlefield where life draws a line in the sand. Where dark things go to die.

In the classic Japanese comic book series “Lone Wolf and Cub,” one of the lead characters was Daigoro, a three-year-old samurai child who had experienced and witnessed unimaginable tragedy in his life. A recurring theme was how anyone who really knew what they were talking about that encountered him would shudder upon looking closely into his eyes – warrior’s eyes, far too cool and collected and accustomed to death for any three-year-old to have.

I study my son’s countenance sometimes, looking for that same thing. Most of the time I see nothing. One of the remarkable things about his recovery is that you almost can’t tell there was ever anything wrong with him. But every so often I see a certain set of the jaw, a hard furrowing of the eyebrows, and I know that the instinct to push past his limits at all costs is setting in. Even as I all too often remain in the mindset of the warrior, his is that of an explorer who is determined to move on to the next thing.

If the way of the warrior is resolute acceptance of death, surely the way of the survivor is fervent embracing of life.

   Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.

Originally posted to poguesrun on Mon Sep 30, 2013 at 06:50 AM PDT.

Also republished by Monday Night Cancer Club and Community Spotlight.

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