Fun With Cancer

I was diagnosed with testicular cancer June 17th, 2014. Life goes on.

Just What I Needed.

It’s been ten years now since my cancer diagnosis, the perfect time to see that the hospital where I went for treatment offers an Introduction To Chemotherapy class. It’s a great idea and I’m glad it’s being offered, but where was it when I needed it? I could have used something like that when I was at the beginning of treatment—it would have been even better to have it before the first day I walked into the clinic scared out of my mind because I had no idea what chemotherapy was going to be like or what it would involve. I’d watched Breaking Bad and seen Walter White go the clinic for treatment but I don’t recall actually seeing what that involved until close to the end of the final season, when he was living alone in a cabin in New Hampshire. And, in spite of knowing far too many friends who’d been through cancer themselves, I didn’t realize he was getting chemotherapy. I’d also read memoirs by people about their own cancer battles, specifically Robert Schimmel’s Cancer On $5 A Day (which was originally supposed to be called I Licked The Big C), Gilda Radner’s It’s Always Something, and Julia Sweeney’s God Said Ha!

So I was prepared to face cancer with a lot of humor. And I was prepared for side effects, which I got. My hair fell out, I had bouts of nausea, and my fingernails got dark and crusty. I got a rash from sunlight. And I felt tired all the time. What I wasn’t prepared for was what the process of getting chemotherapy actually meant. Nothing I’d read or seen, I thought, actually showed what happens to a person getting chemo, so I imagined it was too gruesome to be shown or even described. This may sound really stupid, and my wife and other people have even asked me, “Why didn’t you ask about it before you started?” Because I was terrified of what it meant but also trying to put on an unnecessary brave face. And whatever chemotherapy involved I was going to go through it because the other option was, to be blunt, death.

Here’s what happened on my first day, and every subsequent full session after that: I went into the clinic and sat down in a room. Some nurses came in and gave me a few pills and a cup of water. Because it was really cold in the clinic, in spite of it being 90 degrees outside, they offered me a warm blanket. They brought in an IV pole with a bag full of fluid, stuck a needle in my arm, and said, “Call us if you need anything” and left me there by myself for three hours. When the bag of fluid was empty an alarm went off, they came and took the needle out of my arm, and that was it.

When someone gets a cancer diagnosis they’re bombarded with information: what it means, what their chances are, what their treatment options are. I get that a detail like “At least part of your treatment will involve sitting in a chair for hours so figure out something to do with your time” is not something most doctors will think to say.

And I doubt any of them would recommend filling that time with some bad lip syncing.

The Game Master.

I have a painting that was made by three artists. All three signed it but I wish I had a fourth signature: that of the person responsible for making it happen. His name was Rembert Parker.

I’d been introduced to Dungeons & Dragons by my friend John and, early in our freshman year of high school, he invited me to go to a weekend D&D convention with him in Evansville. His father drove us and when we got to the hotel John introduced me to Rembert—an older guy who was just a little taller than me, with lanky hair, round glasses, and a friendly smile. John had met Rembert at a previous convention and they’d become friends but then, as I quickly realized, Rembert was friends with everybody. In the few minutes we chatted at least two dozen people said “Hey Rembert!” as they passed by. Rembert was also one of the organizers of the convention, so it wasn’t just because of his outgoing nature that everyone knew him.

Then John and I got invited to join a D&D game and we went off to a hotel room with a group of strangers. The game was part one of a module, called something like Road To Verangia, that would be played over the weekend. At the end of it everyone would vote for the top three players who’d then advance to part two. Those who didn’t advance could find another game.

The next morning all the attendees gathered in one of the hotel conference rooms. Those who’d advanced—including my friend John—went off to play Road To Verangia part two. Alone and unsure what to do with myself I sat down at a table and was soon joined by a friendly group of strangers. We chatted a bit and then a guy came over and said, “All right, looks like everybody’s here. I’ll be your Dungeon Master today. Let’s start the game.”

“What’s this one called?” someone asked.

“It’s called Certain Death To Your Characters” the Dungeon Master laughed.

Oh, thank goodness, I thought. For a moment I’d been afraid it was going to be a repeat of the previous night’s game.

Character sheets were passed around. I looked down at mine and realized I’d been given the same cleric I’d played the night before. I panicked and looked around, but the room was empty. Not knowing what else to do I just played dumb, and stayed dumb, not using my knowledge of what was to come to my or anyone else’s advantage.

Later that day I’d go to lunch with John and his father and they’d talk about a guy who’d been in the previous night’s game and who’d tried to sneak in to a repeat of part one and how terrible it was that some people just couldn’t obey the rules.

“I won’t be surprised if Rembert kicks him out,” said John’s father.

“And he’ll never come back to a convention where Rembert’s in charge,” added John.

I chewed my chicken sandwich glumly, certain that my own crime would be uncovered, wondering if I should throw myself on Rembert’s mercy immediately. But I decided to keep playing dumb instead. And, somehow, over the whole weekend, it went undiscovered—or no one said anything if they noticed.

I went to a lot of conventions after that, most of them organized by Rembert. He and John were still friends but I kind of avoided him. He was a good guy and fun to talk to but, silly as it seemed even at the time, I still carried a slight air of guilt. Over time I just assumed he forgot who I was. Everybody knew Rembert but he couldn’t be expected to keep track of everyone.

Every convention had an art room and on Saturday night there’d be an art auction. I liked a lot of the paintings and would usually bid on one or two. After losing a bid on one someone tapped me on the shoulder. I turned around. It was Rembert.

“Hey Chris, I noticed you liked that painting. I’ll talk to the artist and see if he’ll do one for you.”

This was surprisingly generous and, because Rembert was involved, a couple of other artists got interested and all three of them collaborated on the painting. I’m sorry I’ve forgotten the names of all three artists, although they signed the back as well as putting their names on the front so I can always open the frame if I ever get it appraised.

I’ve never forgotten Rembert, though, so I was sad when John told me he’d passed away earlier this month.

I didn’t realize Rembert had a blog where he wrote mostly about old and mostly forgotten songs “that the radio seldom plays”. Here’s his last entry:

Sadly, I’ve been in the Hospital with Cancer for a few weeks.
I hope to return to daily posts within a few weeks!

Funny and optimistic to the end. When John and I talked I brought up the painting, and John, who still goes to gaming conventions regularly, said that the ones Rembert organized were small—at most there’d be about two hundred people, which made it easy for Rembert to know the artists, and everyone else, unlike modern gaming conventions that have thousands of attendees. There used to be a stereotype of D&D players as socially awkward loners, but the small conventions really showed how untrue that was. We all got to know each other, even if it was just in passing, although they were just big enough that some noob who’d never been to one before could accidentally play the same game twice and have their mistake be forgotten while they were remembered.

Hail and farewell, Rembert. You were, as Nat King Cole sang, unforgettable in every way.

It’s A Date.

A friend of my wife’s sent us a platter of dried fruit which I like for being so artfully designed with the different colored fruit and the cluster of nuts in the middle. “Clusternuts” is the polite term for how many people think of all the shopping and prepping they have to do for the Christmas season, but that’s another story. And it does seem very Christmas-y. I remember as a kid wondering what sugar plums were. Then I saw a guy on one of those daytime talk shows making some out of dried fruit, nuts, and sugar. He also took some dried fruit slices and dipped them in syrup which just seemed like a waste of good dried fruit and a recipe for diabetes. I also remember reading The Velveteen Rabbit as a kid, which mentions that, in addition to the title rabbit, “nuts and oranges” were in the Christmas stocking. I’d never thought about it before but I realized that in the 1920s, when the book was published, oranges were a special treat for some people–not just a fruit you could pick up at the store any time you wanted.

The one thing I balked at in this collection of fruit is the dates. I loved dates. Note the past tense. It seemed like fresh dates would show up in the stores around me once in a while, which is odd because they’re widely cultivated and have a long shelf life, especially for fruit. So when I’d see dates I’d fill a bag and munch on them for at least a month.

The last time I did that was early June 2014. Then I was diagnosed with cancer and stress killed my appetite. I’ve avoided even thinking about this but here’s some friendly advice for anyone going through chemotherapy or any medical condition that reduces your appetite: avoid foods you love. Your doctor and other people will try to get you to eat, and you should–it’s important to keep your weight up as part of staying healthy. But if you have nausea or even a reduced appetite you may suddenly find you hate the foods you love.

Or it may just be me. Maybe it’s that I associated a big bag of dates on the kitchen counter with a very uncertain future. Note the past tense.

I pulled a date from the fruit tray. It was warm and gooey and sweet–like chewy honey. It was as good as I remember dates being before looking at them made me sick.

Eight and a half years is a lot of dates and it took all of them for me to realize I love dates again.

Comb Over.

Source: The Guardian

It never occurred to me until recently that No-Shave November isn’t just something fun that people can choose to do, like Talk Like A Pirate Day, but an actual organization that people can join and that raises money to treat and fight cancer. I always assumed it was a voluntary activity and I discovered how serious it really is when I went to check and see if it was still something people did. Now I feel guilty for never participating, although, for me, participating would have to mean donating some money to the cause. I have never been blessed with abundant, or even reasonable facial hair. Even if I did quit shaving for thirty days my face would be punctuated with dangly patches.

I don’t mind being baby-faced, though. I had a roommate in college who could walk twenty feet to the dorm bathroom, shave his cheeks and chin completely smooth, and have a five o’clock shadow by the time he got back to the room. I guess the only reason he even bothered to shave is in two days he would have turned into Alan Moore, but that’s another story.

What set me off on this line of thought was the discovery of the world’s oldest known sentence on a comb. The inscription says, “May this tusk root out the lice of the hair and the beard,” and from the louse and egg remnants still clinging to it after almost four-thousand years apparently it worked. And we also now know that cooties weren’t just invented on the playground but have been around a really long time.

Various historians have speculated about what, exactly, allowed our first ancestors to start building civilizations. Some think it was fire, others think it was the transition from a nomadic, hunter-gatherer way of life to an agricultural one. Some have even suggested underarm deodorant.

I think tools had something to do with it. Tools require instruction, not just for their making but for their use. Imagine looking at something as mundane as a comb and having no idea what it was for. And while grooming seems like it’s partly a matter of comfort it’s still important–it’s not something I’d call entirely voluntary.

Number Eight.

Eight years ago, on September 23rd, 2014, I had my final round of chemotherapy. Eight is a funny number: it’s two fours, which are two twos, which are two ones. Maybe that’s why a lazy eight is used as the symbol for infinity. Upright it also resembles an hourglass but, while I continue to mark time since I was cancer free, I also need to look forward. It’s time to reflect on what I miss and what I don’t miss from my bout with the crab.

Lately I’ve been noticing the moon which is currently waning down to a slim crescent. It was in the same phase in late September 2014, which seems auspicious—one phase coming to an end and another about to begin. On that afternoon in June when I was first diagnosed with cancer and my wife and I rushed to the emergency room because they thought I also had a blood clot I ended up spending the night in a room in the lowest level of the hospital, a room without windows so I couldn’t see the sky or even the light shifting from day to night. Then they kept me in the hospital another night but moved me to a room in a completely different section, high up in a corner, where I at least had a window but, thanks to the oddities of hospital architecture, the only thing I had a view of was a brick wall. But I could walk to the end of the hall where there was a big window that looked down on a gas station, restaurants, a coffee shop, stores, and I could see people walking up and down the sidewalks. I didn’t think to look up, only down, wondering what was going to happen to me.

Chemotherapy followed a rigid schedule. My oncologist even said at the outset that no matter what happened we would plow ahead with the treatment. If a meteor hit the clinic she had a backup location. If some other unforeseen disaster happened she’d still find a way to proceed. One morning while I was waiting to go in for treatment a nurse came out and told me my white blood cell count had crashed and they thought they might have to pause until it went back up. My oncologist told them to go ahead. She couldn’t think of anything that would halt, delay, or change the plans that had been made. Somewhere, off in the distance, 2020 heard that and snickered, but that’s another story.

It was just three months but it felt like forever, probably because chemotherapy was such an unusual experience. It was lonely, too. Most of the time when I see chemotherapy portrayed in TV or in movies people sit in chairs next to each other while poison slowly drips into their veins. And most cancer clinics, I think, are like that: they pack people together like they’re on an airplane. My clinic had the real estate to give every patient an individual room, which was a mixed blessing. There were days I wanted to be by myself. There were days I would have liked some company. One of those days, in my first week of chemo, a guy with a guitar came around to sing songs for the patients. He came to my room and played “Edelweiss”. I asked if he knew anything more uptempo, so he played “Surrey With The Fringe On Top”. I started to ask if he knew anything from Sweeney Todd or if I was going to have to cut my own throat but instead I just politely said, “Thank you, I think I’d like to be alone now.”

I miss chatting with the nurses each morning as they stuck needles in me. I miss the mornings when I didn’t have chemo and I would stay in bed, one of our dogs curled up next to me. I don’t miss forcing myself to get up at nine because if I didn’t I’d stay in bed all day. I don’t miss the night sweats or waking up to soaked sheets. I don’t miss the brief bouts of nausea or the medication that took away the nausea and made me so ravenous I’d cook and devour stacks of French toast with Nutella and pecans, then have a midmorning snack of cheese and crackers and a couple of hot dogs and chips for lunch and fried chicken and mashed potatoes for supper followed by a root beer float and I really don’t miss gaining more than thirty pounds in less than two months.

And I don’t miss the rigid schedule of chemo. At the end of it was uncertainty. Technically the doctors wouldn’t give me the all-clear until December when they performed surgery to remove and check several of my lymph nodes, but they didn’t find anything. I’m also the one who had cancer so I get to set the date.

Uncertainty, I realized, was a gift. It was time unbound, the hourglass that fixed the movement broken.

Source: Mind Of Frames

Public And Private.

Source: Boston Globe

Public tributes to Chadwick Boseman, like the one in Graffiti Alley in Cambridge, Massachusetts, are a reminder that he was a public and very prominent figure. And yet he kept his cancer diagnosis private so that many of us who are fans were shocked by his death. I know some have criticized him for not speaking up, saying he missed an opportunity to educate the public about colorectal cancer and its changing demographics. It’s rising among younger people and Black people. I won’t repeat or even link to the critics but at the same time I will acknowledge them. He didn’t choose to get cancer, but he could choose how he responded to it. I don’t know why he chose not to talk about it but I know when I was diagnosed with cancer I didn’t want to talk about it, and didn’t tell anyone outside of a few people for three weeks. And when I did talk about it I joked about it because it was hard for me to admit even to myself, even after I’d started chemotherapy, that it was really happening.

There are a lot of reasons my own fight with cancer is different: I had a different, and much more treatable, cancer, and my own treatment was probably a lot easier than his. And yet I remember days when I didn’t even feel like getting out of bed. I was out of work for six months because my immune system crashed. He kept working, filming and co-producing Marshall, Black Panther, and two Avengers films. He was even confident he could finish Black Panther 2.

Also consider four major roles that help define his career, a career that was cut too short: Jackie Robinson, James Brown, Thurgood Marshall, and T’Challa, the Black Panther. There was some luck involved—in art and in life none of us can control everything—but he chose to portray four people, three real and one fictional, who are all legendary. He chose roles that contributed to discussions about race in the United States.

Respect his choices.

Hail and farewell Chadwick Boseman.