The long-term, ever-revealing nature of pain

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Monday August 17, 2015 · 4:30 PM PDT

2015/08/17 · 16:30

It’s odd, sometimes, which parts of the burden turn out to be the heaviest.

After all our family has been through, my son’s latest development is the one that came closest to cracking something inside me as a cancer parent. Ironic, since in the course of a six-year cancer survival journey it is probably the least consequential setback we've ever had, but I feel it more keenly than most.

Quick summary of the backstory: My son is 8 and still feeling the effects of a stage-four cancer diagnosis at the age of two that he really had no business surviving at the time – his brand of neuroblastoma had a survival rate in the single digits, so we tried a variety of experimental treatments on him. They worked so well that these experiments are now the standard treatment for neuroblastoma, but the long-term side effects remain unknown. All we know is that there are a LOT of them, many of them quite serious, and no doubt more yet remain to reveal themselves.

poguesrun for Monday Night Cancer Club

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Monday September 01, 2014 · 4:30 PM PDT

2014/09/01 · 16:30

The images flicker through my memory as half-remembered snatches of youth, a childhood where my church hall was television and my icons were superheroes crushed by fate and rebuilt by mad science.

"I can't hold her, she's breaking up, she's break --"
"Dr. David Banner, searching for a way to tap into the hidden strengths that all human have. Then an accidental overdose of gamma radiation alters his body chemistry ...
"The television screen is the retina of the mind's eye."

I get circumspective about my son's cancer roughly three times a year: in May, around the diagnosis anniversary, when we discovered stage-4 neuroblastoma at the age of 2; in late November, remembering the deep dark days of stem cell transplant; and in September, which kicked off the hardest three months of my son's cancer treatments and is also Childhood Cancer Awareness Month. And when I get circumspective, I get writing.

In the late 1970s and early 1980s, body horror took hold in the popular consciousness, even if sometimes people didn't really think of it as body horror. The concept of one's own flesh turning against them, warping in the wake of forces not entirely understood. On TV, the likes of "The Six Million Dollar Man" or "The Incredible Hulk" delved deep into the subconscious fear of the body torn apart and reassembled, sometimes by the very same aspects of science, week in and week out.

poguesrun

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Wednesday May 14, 2014 · 6:32 AM PDT

2014/05/14 · 06:32

Followers of my (extremely infrequent) diary know of my son, Armand, diagnosed with stage-IV cancer at the age of 2 and extremely grim odds of making it to age 3. And you also know of his fight to survive and thrive in those circumstances and rebuild himself, detailed here and here.

This week marks 5 years of survival since his diagnosis. It also marks five years since my wife and I learned she was pregnant with Armand's little sister, Autumn-Rose. (Yes, we got both pieces of news the same weekend. It was a little weird.) He and his sister are fighters in the face of the impossible. Every year I create a poster-style tribute to the anniversary. This year I went with a G.I. Joe theme, and decided to get ambitious since it was the 5-year mark and edited a full four-minute video.

Then I got REALLY ambitious and asked a couple of the voice actors from the original GI Joe cartoon if they would narrate it, and to my great surprise and pleasure they said yes.

The results are below. Take a look; I promise it'll be a good start to your morning :).

Monday Night Cancer Club: The Devil's Path

poguesrun

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Monday November 25, 2013 · 5:00 PM PST

2013/11/25 · 17:00

In the days leading up to November 13th, 2009, we took our son as close to the edge of death and beyond as he had ever been or ever would be again.

There’s really no other way to put it. My son, two years old and pushed to the brink, six months into a trench-warfare battle against the gigantic neuroblastoma tumor lodged in his abdomen. We and a team of doctors and nurses fed a string of lethal poison in a tube directly plugged into his heart. Ablative chemotherapy. An order of magnitude up from regular chemotherapy, which is a carefully controlled dosage of poison meant to kill the cancer and hopefully not you. The first six months is a game of inches where you pump the chemo as far as the body can endure yet retreat to rest and fight another day. Not so with ablative chemo. Nuke the site from orbit. A thermonuclear blast capable of killing anything it touches, an unholy concoction no living being could survive. It devours the body from within, eating the bones from the inside out. By the time you get this far, regular chemo and surgery have wiped out cancer very nearly to the molecular level, and ablative chemotherapy exterminates whatever free-floating rogues might be left.

And, save for one small step at the end, sufficient to kill any human being in days.

Poll

21 votes Show Results

Do you feel any literary, real-world or historical archetype applies to your journey? If so, click on your answer and explain in detail below

21 votes Vote Now!

Do you feel any literary, real-world or historical archetype applies to your journey? If so, click on your answer and explain in detail below

Religious figures

1 vote

Figures from myth and legend

8 votes

A historical figure

0 votes

A historical class of person

0 votes

A figure from superhero fiction

0 votes

A figure from films or TV

1 vote

A figure from books

0 votes

Someone in real life you know personally

3 votes

Someone from real life you don't know personally

1 vote

None

7 votes

Monday Night Cancer Club: The way of the survivor

poguesrun

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Monday September 30, 2013 · 6:50 AM PDT

2013/09/30 · 06:50

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.

poguesrun

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Monday February 18, 2013 · 3:52 PM PST

2013/02/18 · 15:52

I’ve been on a massive fitness kick in the last year, going on a healthy diet for the first time in my life and exercising like a madman, and people frequently ask me why. And I don’t always have a good answer; until recently, I didn’t have a good answer even for myself. Part of it was advancing age; nothing quite like trying to do high-intensity activities when you’re 37 and 265 pounds. That’ll force you to face reality in a serious hurry.

Even beginning to realize I was shaving years if not decades off my life didn’t do much to ease my sedentary lifestyle and frankly awful eating habits. Once I get motivated to do something, I’m not prone to half measures – but I spent 20 years not being motivated.

I told people it was a matter of pride, of personal drive, of “someday” finally becoming “now.” And all these explanations make perfect sense and do indeed contribute mightily to my motivations.

But one element looms above the rest. Truth is, I want to be worthy of my son. And I don’t want him to lose his father at a young age.

RSS

The long-term, ever-revealing nature of pain

Monday Night Cancer Club: Long live the new flesh

A GI Joe tribute on 5 years of cancer survival

Monday Night Cancer Club: The Devil's Path

Monday Night Cancer Club: The way of the survivor

The Teddy Roosevelt School of Physical Rehab