I like to pretend I was at the disco
Updated: Aug 17, 2018
When you’re lucky enough to be healthy enough for radiation you suddenly have all these choices to make, but you thought it’d be easier. You realize you have the mental capacity AND the energy to transform the health care industry in one fell swoop if they’d only: do this.
Example. Instead of driving all over tarnation (I have always wanted to use that word) trying to find a radiologist you can stand, * there should be an app for that * — something where you can review all the doctor candidates at your leisure. Picture yourself thumbing through each physician’s likes and dislikes, what topics of conversation they tend towards, maybe the art they have on their walls and the music they play overhead, and, oh, if they are keeping folks alive at all. Because when you’re looking at six weeks of daily treatments these things tend to tick up rather quickly in your what-you-can-stand-ometer.
Another example? How about if all docs have access to the same level of honesty and candor and machines. In my particular case, it took several visits trying out some very intelligent radiologists before it was revealed that my body’s physiology is an *issue.* Apparently I have a heart that likes to snuggle as close to my chest wall as possible — I imagine it with a glass pressed against that wall, trying to eavesdrop on the world outside.
Lovely as that sounds, it makes the prospect of radiating my left breast to get at my dang stubborn recurring cancer some incredible fine trickery. The issue is that my curious heart just might get zapped right along with it. Which, apparently, is problematic if I want to continue to use it. And…..I…..do.
So after a few tragic doctor dates (OK I guess they were technically appointments) we sniffed out a doc who was not only a good hang (he spoke laughingly about his 4 month old son and his too-tallness and his wife’s expensive shoe habit and how much he loves to eat goat) but was so dang good at his job that he lectures all over the nation to share his brain with people. And, get this, my dude has access to a “heart sparing” radiation machine. Which, I know:::: shouldn’t they all be heart-sparing machines??
I live in Cuyahoga Falls. To keep on living, I gotta meet up with my heart-sparing machine in downtown Cleveland. So, when you look at the math, that’s one hour there (assuming there’s no accidents or even a whiff of rain) then what, 15 minutes to park and walk to your appointment? Then a half hour, forty-five minutes for your appointment, then back it all up and combined? Three, four hours out of every day for 30 days? Fuuuuuck.
Try telling that to your kids. Where you go each day, and why.
Free valet parking is a beautiful thing, especially when you’re all tired and it’s 94 degrees and 94% humid and its Cleveland and you just don’t wanna do stuff anymore. But in the end, even though I’m a patient I’m not a patient person, and preferred to park in one of the garages then hike it through the connecting sky-bridges to my appointment.
I’m not saying this was a pleasant experience. Most people, turns out, don’t know how to maneuver parking garages nor have the capacity to realize that driving safely in them behooves us all. But I told myself most days that if a driver can’t figure out how to manage a turn in a parking garage then really, that’s a good thing. Because that must mean they aren’t in hospital parking garages all that often. And I would honestly be glad of that for anyone.
There’s these brief moments where you are walking through the sky bridges and you could be anyone. You could be visiting a friend, say, or just getting a check-up. Hey, maybe you’re there for a job, or you’re in medical sales, whatever. But when you turn down one very specific walkway there’s no mistaking. You’re entering the cancer zone.
They try to trick you. There’s all this beautiful gigantic artwork on the walls, and the air conditioning suddenly kicks in. It smells like *clean.* There’s music. But maybe they should reconsider the playing of harp music in their long white hallways.
The people walking away from the cancer zone have a very certain look on their faces that the faces coming from the other hallways do not. Some people are just walking and crying. Some are low in a wheel chair. Some are actually just fine, walking with that clip in their step that says, “just cuz I have cancer don’t mean I aint got shit to do.” But it’s the hall no one wants to walk down, and you’re a-walking it.
The First Waiting Room
I don’t know why I’m calling any particular room a “waiting room” when let’s be real: every room is for waiting. To get to my heart-saving machine you walk past four such rooms which are always in the same state of filled, and you take the elevator down and down and down.
On a good day you ride along with some very kind people with a paper plate and plastic wrap trying to contain some home-baked muffins for their nurses because it’s their last day of treatment. Maybe there’s a beautiful young family and dad’s in a nice pink polo shirt and the kids are helping push his wheelchair and it’s all so beautiful you breathe deep through your nose so you don’t cry and you try to suss out are those muffins blueberry? Or are they apple cinnamon? They’re banana chocolate chip.
And when you arrive at your waiting room you’re surrounding by beautiful people again. Your husband will sit next to an old woman who wants to tell him about the color of his aura. An Amish posse of 12 family members shuffle worriedly and silent. A man who smells strongly of necrosis who walks with a cane is offered a cup of coffee from someone’s tired sister. It’s all so beautiful. It really is.
That’s how many I got so that they could line up the radiation machine just so. The tattoos in reality are just little dots - grey freckles if you will - but I like to think of them as five additional traces of badassery courtesy of cancer.
My doctor likes to show me why the heart-saving machine works by dazzling me with pieces of paper that illustrate the sines and cosines or whatever of how the radiation is literally bending around my heart. I nod politely, like, dude. You know I have no idea what you’re showing me.
What does feel immediately tangible is the breathing machine they put you on to literally press your heart away from your chest wall during the zapping. From a patient perspective, it goes like this:
They place a snorkel-like contraption in your mouth. It smells kind of like cupcakes, and I forgot to ask them why this is and how they did that because it is awesome.
There’s a thick bendy-straw-like tube that then connects to what I assume is a ventilator. Your arms go above your head and they give you a triggered button for controlling the machine. They place a plastic clothespin over your nose so no air escapes. Yep, a clothespin. You’d think it would somehow be more technical than that, but, oh well.
So during treatment there’s a table you lie on. It’s not uncomfortable. Your arms are above your head, you’re wearing your snorkel gear, you’ve got your button. There’s then this large round white and black robot eye on an arm that rotates around your body. Being at the center of its attention is rather odd, for as it swivels around you it feels like it’s actually curious, in a way. One big ole eyeball that opens and closes over you in shy benevolence.
The truly wonderful nurses are in a separate room and they speak with you through a speaker. “When you’re ready.” This is your cue to press your button and then take a big ole breath, which you then hold for 20-30 seconds while they do the zap. They give you a 10 second heads up so you don’t panic over how much time is left to go, but for me, especially at the beginning, I struggled with this. With each deep breath I would be uncomfortable with the thought of not being in control of my own breath. Don’t get me wrong - I did it, because I had to - but I’d much rather have been doing something else. You do this over and over. Maybe 15 times? There’s much adjusting between each zap and sometimes there are X-rays in between to make sure they’ve lined it up right that doubles your time throughout the process.
Strangely, towards the end, I came to enjoy those deep breaths - something peaceful was found in the fullness in my lungs. Even now I take in and hold my breath because it feels something on the border of something big, and good. Like grace, or compassion, or, life.
What the room is like
But I digress. So when you’re holding your breath time does weird things on you - you can feel each second quite immediately. You have all this time to assess the things around you. In my particular treatment room there was some magical technician named Brooke who arrived at the room first each morning and thereby got to be the DJ by default. Brooke hooked that room up. I never met her, but I could tell we’d be pals by her playlist alone. There was also this groovy light system near the top of the walls that glowed blue, then purple, then turquoise, then back again in a hypnotic, peaceful way. I liked to pretend I was at the disco.
So you’re holding your breath and the music is playing and you’ve got your own light show. The big robot eye pries in its curious way. And when it’s positioned just right over your face, four inches from your nose, you can see inside. How the pupil dilates and constricts and flexes like metallic muscle in intricate patterns as it adjusts its patterns through treatment. And you know what is happening is high-tech and very complex, but the inner mechanism itself seems very industrial. Metal teeth that look very much like screwdrivers shift towards and away from each other in almost-musical steps, controlling the level of death entering your body.
What it feels like
And that’s a weird thought. For me at least, I didn’t feel anything at all during the actual zapping. It was more of a residual, cumulative energy rob, much like after a day spent in the sun. And of course what the radiation is doing is killing the cells in your body that are cancerous — but it’s taking the good cells right along with them. So there was a killing field across my chest that started right between my breasts, went up to my left clavicle, wrapped down around my armpit to my left shoulder blade, and back around down to just beneath my left breast.
I have some seriously sensitive skin so even after my first treatment I knew I was in trouble. Again, you don’t feel anything during the radiation itself but after — even now, six weeks later — you feel a heat.
There’s a nurse who tells you what moisturizes to use on your skin and how to not exacerbate your “issues” and I did all the right things. But there’s no fighting what your body is.
Turns out my body is not all that fond of radiation. First the area just felt warm all the time. Then the follicles started to get irritated, so that there was a poison-ivy like rash across the entire treatment area. Then it turned a deep, scary red, and I couldn’t stand for anything to touch it. I was lathered all the time in the only thing that would soothe it — Pinxave baby butt cream. I smelled awesome, as you can imagine. And then the skin began to peel.
There was a period there where the peeling was so painful I wasn’t sleeping all too well. Especially in the area under my armpit and beneath my breast there was no way to prevent contact with clothing and other skin and it’s Cleveland in the summer so everything swelled like a beached and dying sea creature. At one point I texted my friend in a frenzy because I thought my nipple had fallen off.
But then, through that miracle that bodies possess, my body began to heal. About 2-3 weeks after treatment was complete, the skin was back to something like normal.
In between it all, your life is nothing but sleeping. Your kids find you boring. But, at the same time, while you have slept they have found all of the places you hide candy, so they are grateful for that.
I’m not much of a baker, so on my last day of treatment instead of muffins I brought the nurses bath bombs. I had them in individual little bags with a kind but courteous note, and it was all adorable and stuff. I had in my mind that I would walk off that elevator like a celebrity — all smiles and energy, ready for people to cheer and throw confetti in my hair. It was my last day! Let the universe shine upon me!
But instead, I sort of muddled through in a haze of fatigue and something close to anxiety, and I wasn’t sure why.
When it was my turn to check in at the front desk the receptionist showed me her row of pretty teeth and congratulated me — by name, because we were buds after all this — and I dug into my bag of bath bombs and presented it to her, saying, “Hey! Thanks for saving may life! You’re the bomb!” And what I intended to be a flash of radiant smile and lasers of joy beaming from my eyes, ended up being a sort of choked up cough of words and I had to look away, blinking, keeping the tears at bay.
I handed out 15 bath bombs that day, and it was all the same, my face betraying me, every time.
When the final treatment was done and the last bath bomb disbursed, I walked to the changing room alone, and shut the sliding door to separate me from the 6 other patients who waited patiently for their turn at zap. All were talking about their progress, or lack thereof. Everyone spoke about “getting more time.”
Dressed, I opened the sliding door to them and feared there would be something tangible to betray me — something that would float over their heads, just out of reach, advertising, I was one of the lucky ones. I was done with treatment. The following morning, while they were driving here, I would get to stay home. Maybe I’d sleep in. Maybe I’d have my coffee in bed with my children surrounding me. But the room was filled with people who would still be waiting, still be here.
As I walked away from them, feeling guilty, feeling small, my footsteps in the long white hallways were conspicuous. That sound of person meeting world. That world stuck together by gravity and miracle and time.
I passed through a set of tall white doors that took me to the main waiting room, and the quiet shuffle there. The shuffle of air breathing the passing of time. I too breathed deep, exhaling a big ole prayer over us all, spreading the hope that they, that we, would still be here. Just a little longer. And please, not in this building. But most definitely here.