Having cancer

Every weekday I drive to a hospital, go down the stairs to a lobby in the basement, and scan a red ID card they gave me. Then I sit in the waiting room for a short period of time before they call me on the intercom.

“Mr. Chick, come on back. Mr. Chick.”

Down the hall past the nurses’ station and the examination rooms are rooms for machines called Tomos. They look like giant donuts. Tomo is short for tomotherapy, which is a relatively new type of machine that delivers more specifically targeted radiation to a tumor than machines that don’t look like giant donuts.

I wait at the door until they come get me. They ask my birthday as part of the identification protocol, even though we all know each other by now. Melinda, Barb, Na, Jenae, Chris, Jerrica. On any given day, I’m not sure who will be there. Melinda is probably my favorite.

The rooms are decorated to look welcoming and non-medical. They look to me like I’m being tricked into thinking I’m going to get a massage. Tasteful wood paneling. A big fake plant. The ceiling is a giant backlit image of cherry blossoms and sky. Inside the donut, someone has taped pictures of a garden. There’s no music. Just the persistent hum of the machine at rest.

I kick off my flip-flops, take off my shirt, and lay on my back on a gurney in front of the giant donut They give me a foam ring I can grasp to make it easier to hold my hands in front of me, although I suspect there’s a bit of a security blanket thing the with the foam ring. It’s easier to have something in your hands than to just fold them in front of you like a corpse in a coffin. They drape a warmed blanket — yes, it’s warmed — over me and then here comes the worst part.

Radiation therapy requires carefully aiming radiation at the tumor. It takes precision and consistency. Some people get marked with little tattoos to help aim the beams. But rather than tattoo my neck, and to make sure my head is positioned the same way every time and doesn’t move, a mesh mask that lies flat against my skin is put over my face and bolted onto the gurney. It presses my head firmly into a bracket that cradles the back of my skull. I can breathe just fine, and I can even see through it, but I can’t so much as wiggle my head. When I blink, I can feel my eyelashes brush the mask. When I inhale, my throat presses against the mesh and I can feel my own heartbeat. Because of the extent of my cancer, my mask extends down my shoulders to my chest. It’s like being closed in the top half of an iron maiden. Minus the spikes, of course.

When I got fitted with the mesh mask the first time, when it was a soft warm wet sheet of plastic pressed down around my head and cooled to harden and fix its shape around my face, I panicked. Well, I didn’t panic. But I decided I was panicking. “I think I’m panicking,” I announced. They held my hand and finished as quickly as they could. I’ve never really experienced claustrophobia before, but this felt like claustrophobia. It was a pitched conversation between two voices in my head. One tells me that I really really need to move, to turn my head, to sit up, to get free. The other tells me to settle down, that I’ll be fine. It’s an argument of lizard brain vs. intellect. It’s anxiety vs. calm. Being told you have cancer uses up a lot of your calm. That might be why the anxiety got the better part of me as the mask hardened around my face, fixing it in place. “I think I’m panicking,” I announced, and then continued to lie there, very still, breathing, focusing on the hand in my hand.

When I told my radiation oncologist about this, he nodded sympathetically and said it wasn’t uncommon. He gave me a prescription for Ativan. “Take it an hour before you come in for the treatment,” he said. I took the Ativan a few times but I’m not sure it helped. The voices were still there, each telling me something different, but with a slightly dreamier timbre. I finally decided to just tough it out. It got easier and easier. Now I’ve learned to drive the argument. It’s almost a form of meditation, letting the calm prevail. I can almost take a nap with that mask pressed against my face.

“Here we go, Mr. Chick,” one of the technicians on duty says once I’m bolted down and tucked under the warm blanket. Then they leave the room because, you know, radiation. But they’re watching from the control room. Some of them talk me through the process. My favorite is Na, who makes it sound like a ride at Six Flags. “Just four more minutes to go,” she’ll announce as if I’m not going to want to get off the machine when the time is up. I don’t think she’s trying to make it sound that way. It’s just the way she talks.

The gurney slides me into the donut and the treatment is preceded by a five minutes computer topography scan to line everything up. The machine makes no more noise than its usual idling hum at this point. You’d almost think they’d forgotten me. But then the gurney slides me out again and there’s another pause while they look at the scans to make sure it’s all lined up. So far, I’ve only had to be readjusted once. Barb came into the room and scooched me a tad to the right and they did it over again. But mostly, someone says over the intercom, “Okay, it looks good. Now we’re beginning your treatment.”

The gurney jerks slightly and feeds me back into the donut. The machine makes a mechanical fluttering noise, as if in anticipation. I am looking through the mesh at the pictures of gardens taped on the inside surface of the donut slide into view. Gardens. Why gardens? Why not oceans? Too turbulent? Why not sunsets? Too final? Gardens are the most inoffensive possible thing. Who could take issue with a garden? I close my eyes. I appreciate that these pictures are here, but I don’t want to look at a garden.

The machine flutters again. The fluttering starts moving around my head, coming from various points in the donut, playful and erratic, like a faerie. I smell a strange acrid odor, like smoke. It reminds me of being a kid and having a cap gun. We used to have cap guns that unspooled paper rolls with little bubbles of gunpowder like beads at regular intervals. When you pulled the trigger, it would advance the rolls to the next bubble and slam a hammer onto it. Pop, pop, pop. The smell I smell when the machine starts up is like the smell of those paper caps after they’ve been fired.

Jerrica tells me there is no such odor in the room. She says if they were to stand in there during my treatment, they wouldn’t smell any such thing. It’s a response some people have to the radiation, she says. She says she’s heard of the smell. The more common one, she says, is a flash of light. Some patients see a streak of light when it begins. I tell her I’d rather have that one. I tell her a streak of light would be more fun. But I only later realize that my mine recalls summers in Arkansas as a boy with a gun that makes a pop like a real gun, chasing my friends Guise and Anthony around the apartment complex, jumping into the pool real quick, then we climb the fence and run across the street to the 7-11 in our bathing suits, barefoot, our hair still wet, with a handful of change in our chlorine smelling and pruned hands, change we’ll use to buy a Slurpee or play the pinball machine. The Tomo’s machine noises flutter around my head.

This part of the treatment lasts about ten minutes. All told, on a typical treatment, my head is bolted under the mask for about twenty minutes, tops. It’s my new routine. I get weekends off. Today I had the 15th out of 35 treatments. 20 more to go. The skin around my neck is starting to darken. It hurts to swallow. I have no appetite. Eating is a chore. I can’t quite get my calorie intake as high as it needs to be. My voice is weak and raspy. I’m not producing saliva normally. I wake up in the middle of the night choked with phlegm, my breath rattling through my ragged throat like a grotesque snore. “What’s that noise?” I think as my eyes open. “Who’s doing that?” It’s me. It’s only me. It’s me.

“It’s going to get more challenging,” the doctor’s assistant said today during my weekly meeting. I knew I shouldn’t have, but I asked her to elaborate. I should have just left it as “more challenging”. It was kind of cruel for me to ask, to make her specify how much harder it will get to eat, to swallow, to speak. But I’m terrified of people not telling me things. The worst of it, and what I have to fight against when I’m pinned under the mask, is the idea that I will go through all this and I will still have cancer. It’s all for naught, says the voice that used to tell me I need to move, to turn my head, to sit up. It’s all for naught and when this is done, you will be as you were before. That voice is going to take longer to stifle.

-Tom

Remember, Tom. You’re never alone. You built this place and there’s always someone here, so it’s like we’re there with you and we’ve got your back.

<3

Thanks, Brad. And I hope you guys don’t mind me using this thread to just talk a bit about what’s going on. I’d also welcome anyone else’s stories. I know I’m not the only one who’s dealing with this, or has dealt with it, or been close to someone who’s dealt with it. I’d love to hear from some of you as well.

-Tom

Those cap guns, I remember them well. Good memories are excellent medicine, keep those ones close because it’s also a time when you didn’t have cancer, a place where you’ll be again once you’ve kicked this thing (and take that other voice out for a sound beating while you’re at it).

Good luck Tom, you can do this. And thanks for the vivid description of the process you’re going through as well, it helps that you shared that.

My mother would drive my dad to his chemo treatments in Minneapolis every week for what seemed like months though it was never very real to me until I saw it in person during one of my last visits from California. He lost his battle with prostate cancer four years ago on Halloween, a few weeks before my wedding. I really appreciate you giving voice to the thoughts you’re having as you wage your own war. Be strong and keep up the fight.

Also, loved those cap guns - thanks for the reminder!

Thanks for sharing Tom. It is hard to imagine what you are going through right now, but I do know writing about it and putting your thoughts down can be helpful in dealing with it, even if you don’t end up sharing it. When my mum passed from cancer about 18 months ago I posted here in the forum and it really helped me begin to come to terms with how I was feeling (though I can’t re-read that post without tearing up). Of course the support and well wishes from everyone here at QT3 was fantastic as well.

Keep up the fight man!

Best wishes, Tom. I was really sad to hear the news. I’m rooting for you.

I’m really glad I got the chance to read your story. My mom had kidney cancer some years ago, and told me nothing about the experience because she didn’t want to worry me; she never did have a great sense of what actually makes people worry. (Like you, I want to be told everything. That’s a good impulse.) The day of her nephrectomy we drove into Chicago early, painfully early, and she insisted on driving – steering wheel, foam ring, all the same thing I suppose. It was so surreal watching her leave us in the waiting room; I had a very conscious thought that I might not see her again, and the upsetting part was I didn’t know the odds because she’d never told me them. Anyway, it was a few hours in the wood-paneled room with the other family groups, and then they lead us to where she was recovering. In the hallway outside her room one of the fluorescents was on the way out, and it flickered on a mop and yellow bucket a janitor had left behind. That made me angry, I didn’t like confronting the fact that hospitals were just buildings, antiseptic only because someone in coveralls made them that way, it wasn’t all miracle workers and squeaky linoleum. The recovery room was dark, too, and my mom was on her side, sucking on chips of ice. She did not look well.

But once the medical ordeal was over she recuperated, gained some weight back.

Last year she got her 5-years-clean bill of health; I’m sure you’ll get yours in 2019.

I’m so glad we can still hear your writer’s voice, even if we can’t hear your speaking voice for now. Not gonna lie, this all sounds terrifying, but we are all behind you! That’s got to count for something.

I heard a story on the radio the other day about these masks. There is some art exhibit featuring them, I don’t quite recall where, but what affected me most were the interviews with former cancer patients describing their relationships to the masks. Some folks keep them as totems, wards against a relapse, comforted by their presence. Others hate them, are furious with them, shooting them, burning them, dramatically destroying them.

I think the art exhibit may be at a hospital, and patients have turned their masks into sculptures, dressed them up, turned them into art. I had to google them to see what they looked like, and yeah, the first thing I thought was “iron maiden.” Fuck.

Tom, that post was something else.


My grandfather was diagnosed with stage 4 lung cancer when he was around 80. I was 25 or 26 at the time. I was living in New York, unemployed, trying frantically to find work, while the rest of my family was living in Maryland. After his diagnosis, I went down on the greyhound to be with him, along with my mother and uncle, for the big meeting with his oncologist. I remember sitting in that little office, listening to the doctor explain the treatment options, while my grandfather sat back in his chair. After the doctor was finished, my grandfather turned to my mother and uncle, and said, “Well, what do you think?”

My uncle was just kind of nodding his head, making this little clicking noise in the back of his throat. My mother was crying, with her head down. When he looked at me he smiled a bit and said, “I guess we fight this thing, right?” Turning to the doctor he said “Whatever you think is best doc, what are we looking at?” The prognosis was horrifying, 6 months if he eschewed treatment, up to five years if it was successful. The doctor explained that there was no cure for lung cancer, and the best we could hope for was to slow down the aggressiveness of the tumors. It’d be chemo. Starting in a few days.

I came down from New York in the greyhound to sit with him for every chemo treatment. I came down for the PET scans too, waiting outside the trailer for him to finish. The word “chemo” always nauseated me, but like most things you’re afraid of, it turned out to be pretty innocuous. My grandfather would sit in a reclining chair, set up next to other recliners, with an IV bag hanging from a stand, while the drug slowly emptied into a vein in his arm. He would mostly sleep, but sometimes he’d send me to go grab him a sandwich, or a cup of soup, and he’d sit there and eat lunch. I mostly read.

I don’t quite exactly remember how long the treatment lasted, but at his advanced age the chemo finished him off. His body couldn’t take the drugs, and his nutrition was all out of whack. He was on oxygen for pulmonary fibrosis, and like the stubborn man he was, he wouldn’t always take his tank with him. Still trying to walk down his driveway without it, to get the mail. He had to be hospitalized multiple times over the next few months, each time upset that his treatment had been interrupted.

Twice he lost consciousness in his home. I was there both times. I remember my grandmother freaking out, while my grandfather made this horrible, almost mechanical breathing noise. We made sure the oxygen tubes were properly in his nose; I ran into the next room to crank up the tank; I called 911. The second time they intubated him right there in the living room. He died about four months after his cancer prognosis. We were fortunate to be able to bring him home before he died. A few days after his funeral I got a call about a job. The job I still have today.

It was pretty amazing that I was unemployed at the time. If not for that I wouldn’t have been able to sit with him during those treatments. Wouldn’t have had those last few moments with him in his recliner, watching the bag empty into his arm, while I sat there with him. Just sitting there. Before the tortured final weeks of his life.

I wish you the best of luck with your battle, Tom. Cancer has hit my family very hard, so I have some experience with what youre facing. The best advice I can give you is to keep your spirits up. Staying positive is huge in the fight. My baby sister is now in full remission and she faced her fight with a smile on her face, always. You can beat this, Tom, dont doubt it for a second!

Keep up the fight!

We are with you there, inside that machine.

I started reading this really hoping you were trying your hand at fiction in Everything Else. You write well, by the way.

Roughly 7 years ago (amazing how quickly time goes at this age–53) I was diagnosed with a "monoclonal gammopathy of unknown (or undetermined, some say) significance. Also known as an MGUS. My body is producing a protein it isn’t supposed to be producing. Bottom line is, they think that at some point it will become multiple myeloma. I get blood tested every 3 months for my light-chain protein production. I’m thrilled to say that, so far, the rate of production has remained very stable–the graph is a basically flat line. But the tension every time I have the blood drawn again, until I get the results back, is oppressive.

Please keep us up to date, Tom. We are all thinking about you.

Tom, thanks for sharing your ongoing fight. While it may get “more challenging,” you can do this. I want to throw out something pithy like “it’s always darkest before the dawn,” but such words always ring hollow, at least for me. You’re an amazing guy, incredibly talented, smart, witty, insightful (and occasionally inciteful!), and you’ve enriched the lives of thousands of people with your writing, your podcasts, and obviously your personal friendships. Please remember the $20k+ that you raised almost overnight is just a small token of the appreciation and love that the denizens of Qt3 have for you.

I ‘beat’ Malaria (only about a 1/10th as scary as cancer!) by envisioning my white cells (the ones that fight infections and virus etc) as little guys armed with axes chopping at the malarial larva hidden in my body. It was a very deliberate mental act, very detailed and very specific, almost like a meditation.

I had been told i’d have reoccurring malaria for many years, and on average i’d be laid low (in a very physical sense) about once a month or once every two. After my sixth visit to hospital, with a few friends that had decided to come visit, i decided that that was enough. I’m not someone to lie on a hospital bed sick, my whole life has been the opposite of that, so that WAS that.

I’d not had Malaria since, and the staff for Tropical diseases could not explain it. Really i guess i’m just telling you this story Tom so you understand you can be in control of this, maybe to less an extent, but really never underestimate the power of your sharp mind, no matter the grim outlook.

Thanks for writing that, Tom. I’ll have to agree with the consensus - we’re all with you whether as shoulders to lean on, ears to bend, or hands to hold. You’re never alone.

Tom, don’t recall if you have a comfy chair or not, but have you tried sleeping in something like that (more upright)? Also, smoothie drinks or ice cream shakes may help the caloric intake. and if you find a nice cool flavor you feel might soothe the throat, all the better. All in all, you can look at it as you are already about halfway there.

Thanks for the perspective. Don’t forget to pet the cat.

Thanks for writing this, Tom. From my perspective, it’s very comforting to read and to know what’s going on, even all of the fears, because it’s completely honest. I feel like I know you a little bit better and can empathize more, like I can send better well-wishes because of it. Is that slightly illogical? I don’t know.

It’s also comforting in another way: my aunt was diagnosed with throat cancer earlier this year, and I only know the slightest about what’s going on there since I don’t live close to the rest of my family anymore. So you give me a chance to have an idea of what my aunt is going through even though no one else wants to really talk about any specifics. So thank you, and keep writing about your journey and your fight.

Wow, Tom. That was really moving and powerful. Thank you for sharing that.

Thanks, Tom. Lovely writing, as usual.

Back in August of 2013, I started getting headaches. Little ones at first, but they were there every single day. I have had migraines in the past, so I figured I could ride these out, no problem. By late September, things had gotten pretty bad. I was at work and my head was literally throbbing - bolts of pain with every beat of my heart layered over a constant, background pain. I decided to go see my doctor. I nearly black out on the way over but her office was close to work and I made it without killing anyone else or myself. My doctor looks at me, checks my vitals and calls an ambulance to take me to the ER. She calls my wife and tells her I am on my way to the hospital. I am told I was completely delerious at this point - screaming incoherently and urinating in my pants. The doctors quickly daignose hydrocephalus (fluid on the brain) and take me into the operating room for a craniotomy. I was told it was like a geyser when they opened me up. Turms out I had a colloidal cyst in the 3rd ventrical of my brain that had blocked the normal flow of cerebral spinal fluid (CSF) in my brain that led to the accumulation in my skull. They were unable to remove the cyst, but the surgeon did install a shunt and a drainage system that empties extra CSF into my gut. Two little tubes are stuck in the middle of my brain, meet at a T valve on the right side of my head which feeds into the drain that was plumbed down behind my ear, down the side of my neck on down the right side of my abdomen. I have these little scars that trail down my body where they guided the line. I was in the ICU for 3 days and in the hospital for about two weeks, getting therapy to regain my balance enough to walk without collapsing. When I got out, I went immediately to an after-care facility for intensive cognitive rehabilitation. Basically, I lived in a house with about 8 other people recovering from traumatic brain injuries and spent 8 hours a day, 5 days a week trying to put my mind back together. I was there for 3 months.

I have lived a pretty decent life since then, going back to work and my everyday business, but last month I had a follow up MRI and my tumor is growing. I’m scheduled to have it fully removed on October 24th at USC Keck Medical Center. I’m not really freaked out, because I think that I have already been through the worst and this surgery is planned out and with an expert in the field. I am actually really glad it is happening, because living with a cyst in your brain really sucks. My short term memory is pure shit; I have to take a picture of where I park so I can find my car when I come out of a store. I even got lost in Target the other day: I was on the other side of the central divider that is in pretty much every store and I looked up from some picture hangers that I was looking at and had no idea where to go. Not a hard problem to fix with a little wandering, but it freaked me out anyway.

I’m not sure about the value of all this to others, but it is pretty cathartic for me to get it all out every once in awhile. Therapy, an active spiritual life and the correct antidepressant (lots of trial and error in that department) have helped a ton as well. Hang in there. Life is always better than the alternative.