Radiation Reality: Poisoned to Be CuredBy Dana Jennings
Prostate Cancer Journal
My radiation therapy for prostate cancer ended in late January, but I still think about it a lot and am still trying to put it in some kind of perspective. The radiation is no longer working on my body, but it preys on my mind.
The thing that sticks with me most is how industrial the whole process is. Even the phrase “salvage radiation” – used because the radiation came after surgery to remove my prostate – reinforces that sense of the industrial. Each day, as I lay in the TomoTherapy Hi-Art machine, tens of thousands of narrow beamlets were aimed at my pelvis: 200 centigrays of radiation for 340.5 seconds.
All this was on my mind this week as I read a New York Times article about medical mistakes involving radioactive seed implants for men with prostate cancer. Radiation therapy (of any kind) denies the cliché that we patients battle cancer. We are merely the battlefield, where the oncologists and the disease do their down-and-dirty work. All you can hope for is that you don’t get caught in the middle of any friendly fire. You understand right away that the big red emergency kill switches throughout the TomoTherapy room are your friend.
The Tomo – as hospital staffers called it – was factory loud, like being sucked into and stuck inside a huge vacuum cleaner. I was the target, down there on the killing floor, as the Howlin’ Wolf used to moan. And I wasn’t alone. According to the National Cancer Institute, nearly 60 percent of all cancer patients get some form of radiation.
To prepare me for radiation I was given a surprisingly cheery and chirpy guide called “Radiation Therapy and You.” It was like a primer for first graders, and didn’t suit my mood at all.
Having been raised on 1950s monster movies – “Them!” (radiation mutates ants into giants), “Godzilla” (radiation mutates slumbering dinosaur), “Attack of the 50 Foot Woman” (radiation mutates unhappy housewife) – I knew that radiation was a big deal. I wanted a drill sergeant of an oncologist to get right in my face and shriek: “THIS IS SERIOUS, SERIOUS STUFF, BOY!!! AND DON’T YOU FORGET IT!!!” I didn’t want or need the equivalent of “Spot Gets Cancer.”
It’s as if the medical establishment tries to encourage a disconcerting passivity among patients, as if radiation is just another therapy. In reality, you’re interfacing with a powerful, powerful machine, and if there were to be a problem, I realized, I could be in deep, deep trouble: “Kill switch engage, please.”
I’m not trying to be an alarmist. I went through radiation. I’m still here. But during my 33 sessions, there were a handful of times when the Tomo wouldn’t work. One of my doctors off-handedly remarked that it was known for breaking down because it has so many moving parts.
One time I waited on the table for an hour, so long that the plastic mold used to position me stuck to my butt when I stood up. Another time, I waited around for two hours as the technician tried to fix the Tomo. Raised in a family of factory workers (and becoming increasingly weirded out that the machine was malfunctioning), I said, “To hell with this,” and went home.
Here in 2009, we take the medical man/machine interface for granted. It doesn’t seem much like science fiction anymore. As I glided into the Tomo for treatment — my feet bound to keep me still — I sometimes felt as if I were in the cockpit of my radiation rocket.
But it was unnerving when the machine broke down while I was inside of it. Because of cancer, I was the one who was breaking down. The machine wasn’t supposed to.
Even when the Tomo worked perfectly, even as the radiation killed any rogue cancer cells in my body, I was still being poisoned to be cured. I got more and more tired, my incontinence got worse and my pubic hair started falling out. After each session, my skull throbbed with a small headache that seemed to whisper: “Radiation … radiation … radiation.”
Sometimes, as I slid and whirred into the Tomo, the radiation therapists would play Pink Floyd — “Brain Damage” — and I’d take a deep breath, shut my eyes, steel myself and wonder what I’d find on that day’s trip to the dark side of the moon.
There must be a better way. Radiation and Chemotherapy are so accepted, but they seem to me to be the modern day equivalent of bloodletting. If I ever get diagnosed for cancer I want to try any and every alternative to poisoning myself. I wish Mr. Jennings all the best with his battle.
— m camp
I have followed your articles for months now as our stories are very similar. This one particular hits home as I start my salvage radiation “therapy” on July 6th. I am scheduled for 39 treatments and have been thinking along the same lines as you about radiation:
– from the movie themes (add The Incredibale Shrinking Man to your list for many reasons, some obvious)
– to the simplicity of the “Radiation Therapy and You” booklet that I received last week (mind numbing)
– to the casuality of possible serious side-effects (my continence has almost returned in the three months since surgery and the thought of going backwards is extremely depressing)
– to more permanent ED.
But the most compelling thing weighing on my mind is the possible long term effects of the therapy to both body and soul which could take years to manifest. Thanks for continuing to share and good luck to all of us who share in this common cure.
— Tommy D
I’m having Tomotherapy radiation right now for breast cancer, 35 treatments, after a bilateral mastectomy and 4 months of chemo. I chose Tomo because of its precision, since I had a tumor 1mm from the chest wall. I find the Tomo experience surreal–that huge, cold room, all the clean whiteness of the room and the no-nonsense machine. Our techs play a loop of four CDs of music , and I’ve been subjected to a lot of Abba. I think that calls for some kind of refund to the patient, don’t you? I like the sound the Tomo machine makes – like shuffling of cards or huge leaves on a magnolia tree blowing in a storm. Isn’t it weird to be treated by something you can’t see? I would swear nothing was coming out of that machine if it weren’t for the side effects on my skin. I can only hope that the techs know what they’re doing when they line me up and that the radiation is really going where it’s supposed to go. It’s all a leap of faith for me. But I am glad to be having radiation because it makes me feel like I’ve done all I can to eradicate any cancer cells in my tumor area. I’ve had excellent communication and response from a staff member of Tomotherapy, making a friend in the process. All the best to you – I love your writing and hope you will continue updating us even after your treatment ends.
— deborah d. lattimore
bloodletting? no. someday, maybe soon, will be thought of as a bit primitive, but radiation and chemotherapy are modern, evidence-based modalities and while not magic bullets, have made substantial impacts.
for some types of cancer, eg. lymphomas and childhood leukemias, chemo and radiation are literally life savers.
It’s important not to oversimplify and judge things with perjorative labels lest some people who might benefit be alarmed needlessly. of course, they have side effects and are certainly not pleasant in any way, but they’re not medieval.
— Doctor S
I finished my “salvage” radiation for prostate cancer back in November. Three things stand out for me. First, I felt lucky compared to so many of the other radiation patients. So many cancers are so much worse: I remember the people that were being brought in by ambulance for treatement . Second, the technicians were always so upbeat and supportive (shout out for Good Sam!) – I always felt their desire to have me “win”. Third, the process of showing up every day for seven weeks, was a positive. That trip every day was a good time to take an “emotional inventory” and weigh this challenge against all the GOOD things in my life.
— John I