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.
All cultures have some kind of myth about the treacherous path the living risk when nearing the dead. Orpheus in Hades. Christ descending to the abyss for three days before streaming back into the light. The various myths that inspired “The Crow.” The common factor: Those who walk this path do it at tremendous peril and steeper cost.
Being a comic book type, I’m partial to the Japanese term “Meifumado.” The path of hell. Made famous in the west via “Lone Wolf and Cub,” in which parent and child travel through the war-torn wreckage of a landscape so doomed it may as well be post-apocalyptic, surrounded by the last vestiges of a society that doesn’t realize it’s already dead. Parent and child have nothing to cling to save each other, and in the darkest, loneliest moments, the child is left to navigate alone.
Ablative chemotherapy brings you as close to death as possible, in a separately-ventilated, closed-off room that you know has a disturbing chance of your child never walking out of again. Your child’s two-year-old body at the precipice, leaning well across eternity’s door while you and all of medical science hold onto his belt for all you’re worth. Descending into hell, hoping against hope to walk the path of the dead and return to tell of it. The devil’s road. Meifumado.
Because the entire point of ablative chemotherapy is death and resurrection.
Out there on the edge of the world, far beyond the edge of any rational human experience, the body is jump-started with its own cells. Stem cell rescue. Cells collected from the patient’s own blood prior to chemo, over the course of dozens of hours of blood recycling, straining to gather just enough precious cells to succeed at the process months later. It’s a complete reboot of the body, jamming down the cosmic reset button with all your might, force-feeding stem cells into the body with the intent of bonding to the dead bone marrow and triggering it to rebuild from the cellular level, as if the day you were born. Some call it a second birthday. November 13, 2009. Everything restarts.
Reset to the day you were born. Every injection. Every vaccine. Every antibody ever exposed to your blood, erased like it was never there. And you’ll spend months with this body, completely incapable of defending itself from the simplest infections, until it slowly rebuilds its defenses. The immune system never completely comes back, not the way it was. You’ll always be a touch more vulnerable, and it manifests differently with every person. He’s wildly susceptible to bug bites that most people wouldn’t notice. Probably always will be. The whole process is so unpredictable it borders on sorcery – you literally pump the stem cells into the heart and wait for them to notice the bone marrow’s missing, then swim in and take its place. And the only reason it works in the first place is because the body was pushed so far to the brink that the stem cells just know where to go to preserve life. All very mysterious.
In practice, though – it’s complete hell on the body. Of the entire cancer experience, stem cell transplant was almost certainly the worst. (Antibody treatment came close, but it was significantly less dangerous than the transplant.) We thought we had seen just about every combination of bodily fluids possible by that point, but stem cell transplant gave us innovative new outcomes every day. Hospital beds full of blood, vomit and god-only-knows what else. (The thing nobody can really tell you in advance about being a cancer parent? You are always mopping up BUCKETS of insides that have ended up on the outside.)
I could carry my son, hold him through many dark passages. But on this one, even with a small army of medical personnel and my wife and I on hand constantly – this path of the dead, he had to walk alone. As he groped his way through the abyss, all we could do was watch, wait, clean up the physical mess, and hope against hope he knew where he was going. To come back to the light, alive against one of the most terrifying and lethal forces nature has ever placed against man. My son. The interfector ex mortem — the vanquisher of death, the killer of killers.
Don’t get me wrong; it was all worth it. Four years later, he survives. He thrives. He has persevered through some staggering odds and to this day acts like it was all perfectly normal to him. My wife and I would have done anything to save our son. And for all intents and purposes we pretty much DID. But that doesn’t mean the experience itself wasn’t pure madness, or that it doesn’t, on quiet moments, sometimes intrude on my memory.
I have acquired a small reputation in certain circles as someone who can reasonably keep his head in a crisis. (I know, surprises me too.) I’ve been asked once or twice why that is. And I really wish I could give some kind of secret-sauce answer that explains it. But the truth is – this right here is why. Once you have walked the devil’s path with your son in the lead, nothing else compares.
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.