Saturday, July 21, 2018

On Why Cancer Isn't the Villain

I was diagnosed with testicular cancer five-and-a-half weeks ago, and though this is the second time in my life I have faced a life-threatening illness — the first was a short-lived bout with severe food poisoning in Vietnam when I was 22 — it barely makes the top 100 of terrible periods in my life. I've absorbed each piece of bad news very quickly. The surgery and its aftermath were almost painless. When you have cancer, the world looks upon you with kindness, the way it should look upon you and everyone else all the time. I've told a few people that I would repeat these past five-and-a-half weeks again before I would repeat a single day of middle school or high school. They laugh. I am not joking.

When I was in sixth grade, and I guess for the following six years, I was the victim of what we now call microaggressions, as well as plain old aggressions. Students and some teachers were mean and I was sensitive. I hated myself and I hated the ways others were treated. I was a mostly decent kid, but like all kids, I could be cruel too. The worst memories from that time have nothing to do with the way I was treated. Cabin John Middle School, where I spent my sixth grade, was home to a program for severely autistic children. Everyday, I saw pathetic mini-Nazis bang their hands on their chest and groan, right in their faces. I've been binge-watching Game of Thrones, and though the show has been criticized for its depictions of rape, I was most "triggered" by an episode in which a group of low-life ruffians torture and humiliate Hodor. I'm mostly over those years, but at 37, my only nightmares I have were born of watching children with special needs get bullied. I've woken up screaming more than once.

What I am trying to say is that I am more horrified by and more scared of suffering caused by other humans than I am by suffering caused by biology or nature. I'm not the only one. Which upsets you more: a terrorist attack that kills a few hundred people or a natural disaster that kills thousands? Your child is more likely to end up in a cancer ward than he is to be shot in a kindergarten. Which possibility keeps you up at night? A child ravaged by cancer is the way of things. A psychopath killing five-year-olds is a violation of the social contract.

Of course, humans are very good at helping biology and nature do their dirty work. My cancer may very well be caused by the processed food America loves to eat. Other cancer patients don't get the care they need because my country, in its heart of hearts, hates the poor and teaches the poor to hate themselves. But the villains that run these terrible systems don't have a name. You don't know who they are. The modern American city has more in common with the Rome of Bicycle Thieves, which was made in 1946, than with the Gotham City of that fascist garbage The Dark Knight, which came out in 2008.

I hate everyone who would spend resources helping Saudis kill Yazidis rather than kids dying of cancer. But I don't hate cancer itself.

Wednesday, July 18, 2018

On Maybe Having to Get Chemotherapy, or More Surgery, or Something (Sorry, the News Isn't Great)

Last Wednesday, I was driving to Ballard to see the Croatia-England match. I missed a phone call from a 206 number. I pulled over. My oncologist left a fast-talking one-minute message, the gist of which was that he and his colleagues had a meeting and decided that I would probably need either surgery or chemotherapy. He had already set up a meeting with a urologist for August 3. He figured we would meet a few days later. We would discuss the pros and cons of each option. I was parked in an empty lot on a side street. I stared at a brick wall for a few minutes. I called the doctor back and left a message with his assistant. I called my mom and didn't go into details. I sat for a few minutes more. Then I drove to a cafe in Ballard to watch the Croatia-England match. Croatia won. I was happy. I called my mom and told her I was in a good mood. I went home to pack for a trip to California, a visit to an old college buddy in Santa Cruz, followed by my cousin's wedding in the Berkeley Hills.

On Thursday, I met my buddy, a professor at UC Santa Cruz, at the San Jose Airport. He, his wife, a reporter for 538, and I drove up to his parents' place in Stimson Beach, and then Bolinas, a hidden community. In two days, I tasted some of the best berries I had ever eaten and walked on the beach for the first time this summer. My friends' parents live in a converted hotel. Bolinas is home to a defunct radio station that used to broadcast Morse Code to incoming ships. They turn the place back on every year on the anniversary of its last broadcast. And I walked among the ancient technology made beautiful with age, and listened to the Morse Code music, so evocative of a recent past. We came back to Santa Cruz exhausted on Friday afternoon. After taking a nap in my friend's hammock, I was finally awakened by a phone call from my oncologist. He clarified the situation: It was still possible they wouldn't have to do anything. Still, they had put the scans on a giant screen and the situation looked more serious and "interesting" — DOCTORS OF THE WORLD I ASK YOU DON'T EVER USE THAT WORD WITH A PATIENT — and that we would have a better sense of things when I got my second CT Scan in early August.

My cousin's wedding was a bluegrass fest. I gave a mic-drop worthy toast. On Monday afternoon, I drove to the top of Mount Diablo with my mother. I flew home Monday night. I took a Lyft to a friend's place in Capitol Hill and we went out for a late night pizza that wasn't very good. But we talked about my cancer and his own plans to leave Seattle. I came home at midnight, and found in my mailbox, a handwritten letter, written out in green pen on college-ruled paper — remember those things? — from a kind friend in my mailbox. I stayed up until 2:30 am writing a reply. I woke up Tuesday morning exhausted, incapable of doing even the work I like to do.   

This is just the latest 180-degree turn in my reality and I have come to accept that my reality will be one of ambiguity, not just for the length of this illness, but for a few years, arguably for the rest of my life. I might as well accept ambiguity as the new reality. My college buddy's wife, who reports on health issues, tells me that there's no point diagnosing an illness if they can't cure or palliate the disease. I'm lucky to live in fear of a disease that can be cured.  

Wednesday, July 4, 2018

On Not Having to Get Chemotherapy (Yes, the News is Good)

I won't bury the good news: It looks like this ordeal — at least any part of it that could be called an ordeal — is over. No hair loss. No weight gain/loss. No compromised immune system. No nausea. No all those many horror-movie scenarios I keep reading about and talking to cancer-survivor friends about.

With that out of the way, here's what happened:

Before it kills you, cancer humiliates you. You think you know your body. You think you know how to organize your days. And then you discover there is something inside you. You are an expert in something, on comics, on fixing cars, on raising your children, and then you are forced to rely on the expertise of many people you don't know.

My surgeon and his colleague had both told me that I would almost certainly need chemotherapy. They had first told me this news the day before my surgery, then again the day of surgery, and then again a week after surgery once they received my pathology report. My surgeon was excellent. He had seen many testicular-cancer patients before. And he had done his job well. I was after all in very little pain, so of course he knew exactly what was in my future.

 I was referred to an oncologist at the Seattle Cancer Care Alliance, whom I saw on Monday. People travel across the country to come to the SCCA. I saw license plates from Georgia and Tennessee in the parking garage. I, however, only travelled two miles. Most of the people at the SCCA do not look any more or less unhealthy than the rest of the world. Bald women are not rare sites in Seattle. (Honestly, they shouldn't be rare sites anywhere but our society is messed up.) But I did see an old man with an oxygen tank. I saw a small child with a mask who was probably half the normal size for her age, and without a hair on her body. 

My mom and I sat in a room with a friendly nurse. We had come armed with two pages of questions about chemotherapy. How long would it last? How often would I come in for treatments? How long would each treatment last? At what time of day would I have the treatments? The nurse had questions for me. There was a degree of comfort in knowing that almost every answer to every question regarding a possible unhealthy habit or problematic health history was "No". "Any illicit drug use?" she asked. "Well, marijuana isn't illegal anymore." She left. We waited a half hour. The oncologist was an affable Greek. He walked us through terminology, acronyms and percentages, odds, and whatever. He noted that he and a very large team had looked at everything. It looked like the problematic lymph nodes were located in odd places that didn't suggest the natural path of testicular cancer and were of a size that suggested at most a minor threat. The doctors don't think the cancer has spread. They think I'm cancer-free. But my oncologist is a good doctor and he knows there is no such thing as absolute certainty. He imagined three futures for me. In the first future — the most likely future — I am a responsible patient who goes in for tests every few months and the doctors continue to discover nothing. ("You look like a compliant guy," he said, by which he meant I was 37 and not an 18-year-old who didn't keep to his medical appointments.) In the second future — which is unlikely — I am a responsible patient, I go in for tests, something isn't quite right, I undergo very minor surgery, and then move on with my life. In the third future — an extremely unlikely future — I am a responsible patient, I go in for tests, something isn't quite right, I undergo very minor surgery, something is even more not right, and I undergo chemotherapy. The third future, if it were to happen, is a very long way off. The underlying message: "I don't know who told you you needed chemotherapy. Follow our directions and go live your life."

To put it another way: I had a few days in the county jail, when I underwent surgery. I am currently spending a few weeks in a halfway house as I recover, which pretty much means walking around in exercise clothes while not exercising. And I start my parole in August. 

I had to go downstairs to get a blood test. It took fifteen minutes and then we debated whether or not we wanted to get a snack at the cafeteria or just head home to the French cafe near my apartment. Of course we left. It didn't feel right to be the man with good news surrounded by people with bad news. At 8:00 am I was checking into my new home. By 10:30 I was either a trespasser or a tourist. And I wanted to leave before I became something even worse, a voyeur.

It's not uncommon for cancer patients, at least in the very early stages, to be relatively relaxed about their situation. As much as I "knew" I would have to go through chemotherapy, I didn't really "believe" it. There was a disconnect between me and my friends and loved ones, who kept thinking that the situation was even worse than what they had been told. Considering what cancer does to so many others — emotionally, physically, financially — it would be obnoxious and the height of privilege to call this a positive experience. But I learned plenty. I am glad it's over.

I experienced no great revelation about death or the meaning of life these past few weeks. I recognized that I was more or less living the professional life I wanted to live. I was reminded that I hadn't accomplished much of what I had hoped to accomplish and I hadn't had the romances that I wished I had had. But there is still plenty of time ahead of me. I also realized that life is not about accomplishment. It is about process. If everything had been cut short three weeks ago, I could say that I lived my life with integrity, that I had helped more people than I had hurt, and that by 37 I was not in any way pretending to be something I was not. 

I am still learning about humiliation. I do not like having to surrender my life, the most precious thing I own, to the expertise of strangers, but that seems to be the way of things. I do not like not being able to exercise as much as I would like to exercise. These last few weeks would be hell for an athlete. I am grateful I still have my mind.

I also learned that I am very capable of doing things when I think I have nothing to lose. Whenever I felt a rise of anger these past few weeks, I picked up the phone and gave holy hell to receptionists and staffers at private prison companies that were responsible for enslaving undocumented immigrants. I don't think it did any good, and I am looking for slightly more productive ways to fight fascism.

I'm a twelve-year-old boy at heart and I like reading about war. This past week I read Ismail Kadare's The Siege, a grotesque comedy about a battle in fifteenth century Albania. On the morning of my appointment at the SCCA, I was laughing hysterically at Kadare's depiction of a debate concerning germ warfare. Before that, I read Primo Levi's western If Not Now, When? which I first picked up when I was 24. I was jealous of Levi's characters and I think he was jealous of them himself. Their suffering had a clear purpose. And they knew how to fight back.

You are likely reading this after clicking on a Facebook link. I went on Facebook for a day a month ago to announce my graduation. I went back on after my surgery in order to post updates for family and friends regarding my health. Now that this little crisis is over, I'm leaving again. I have too much to write and too many novels to read. Life's too short to get depressed in the virtual world. It's better to get angry — angry with a sense of purpose — in the real one.

Sunday, July 1, 2018

On Leave No Trace

When I first got to Seattle six years ago, I joined Meet Up groups and started hiking. I think I've logged a few hundred miles since I moved here, nothing compared to some of my co-hikers. I love/hate it all: the mists, the mountains, the quiet turns on a long stretch up that keeps messing with your perspective, the aches, the way food tastes and feels in your body. I've climbed up sister mountains to Rainier and even though that giant looks like it's right next door it's always at least fifteen miles away. I often say I live in Ursula K. Le Guin land. (She lived in Portland from the late 1950s until her death this year.) When I've shown friends and families the pictures, they say the background doesn't even look real.

I'm never truly "getting away." I'm always hiking alongside city people or at least suburb people. I never hike alone, because I know I'd never make it to the end if I did. (There's only one difficult hike I ever did alone, and that was to the top of Montserrat outside Barcelona when I was a young 26.) This was to be my last summer for PNW hiking, and unfortunately that's just not going to happen.

So of course I had to see Leave No Trace (2018), the new film from Debra Granik, whose Winter's Bone (2010) was one of my favorite new movies ten years ago. It's the story of a PTSD-afflicted veteran played by Ben Foster and his 13-year-old daughter played by Thomasin McKenzie, who try to eke out a private life in public land outside Portland. It's about the ambiguous place most of us occupy between the natural and man-made, the gradations in any relationship between parent and child, and the poverty of human language to describe mental illness and basic human needs. 

In Winter's Bone, the cinematography was a grim layering of greys and blacks. If the disturbed meth-afflicted family weren't characters from a horror film, they were just one step up from the grotesque. In Leave No Trace, Granik's anthropological camera doesn't romanticize the natural world and it does not make city life the nightmare it could be. The many forces of civilization that come forward to help this lost father and daughter are well-meaning and it's up to us to decide how harshly we want to condemn the systems of capitalism, the church, or government for their inadequacies. The policeman who arrests Foster's Will is hardly malevolent and respects him as he should. A businessman who offers Will and his daughter Tom a home and Will a job means well, but he clearly doesn't understand that the father and daughter are not the badass survivalists he would like them to be. He makes a killing growing Christmas trees and sending them to California, and though his work damages his landscape and ecosystem, we can't make ourselves condemn the fellow. I was relieved that the audience of Seattleites with whom I saw the film didn't erupt into guffaws when an elderly dance group put on a silly performance during a church service. When Will and Tom cross over into Washington state and meet a community of backwoods folk who clearly get the pair and what they need — the band includes a lovely beekeeper who feels a spiritual communion with her critters, a dog-loving veteran, and Dale Dickey playing against type as an unambiguously kind matriarch — we recognize that even this form of kindness is inadequate. Will is too far gone, his ability to engage with humans or accept anything like human kindness has been forever compromised. 

The movie gets that Will and Tom's relationship isn't appropriate. Tom is both mother and wife to Will, and Will protects his daughter sometimes as father and at others like husband. The spoken and unspoken accusations of incest are hardly crazy, but the movie sneaks up on you, in much the same way as the episode about emotional incest in The Decalogue (Krzysztof Kieslowski, 1989). The deep love bond makes the issue beside the point. The world and forces thousands of miles removed from Portland, Oregon completely fucked up this gentle, decent man so why deny him this. This relationship is what it is and judgement almost seems besides the point.

In the end, it's understood that Tom has found a mini-civilization in the backwoods which will care for her as she needs to be cared for. But it's not right for Will. No place is right for him. He is a man who can only be alone. He disappears into a landscape that may not be Le Guin-impressive, but is at very least as good as it could be for him. If anything a Le Guin-impressive landscape would be too much for the poor man. It might destroy him.

Having lived in this region for six years, I didn't entirely buy Leave No Trace. On my trips to trailheads I've passed plenty of Trump signs and stopped at gas stations selling vile bumper stickers. You don't have to travel far from urban areas to find Confederate flags. There's a heavy presence of hate groups. That Leave No Trace has few non-white characters may be a quiet way of saying that, yes, it does know what's going on around these parts. In that sense, the third act of the movie is a fantasy, but a devastating one. Even in this world that I still don't believe exists, those with the greatest wisdom, those closest to the earth are the ones who understand that some souls can't be saved and that the kindest thing we can do for someone like Will is to step back and let them experience the living death to which they have been condemned.    

Thursday, June 28, 2018

On Protesters at the Northwest Detention Center in Tacoma, Washington

For the last few days, a group of protesters have occupied the strip of grass next to the Northwest Detention Center in Tacoma, Washington. Ten protesters were arrested on Tuesday night. I drove down last night to meet these people. At very least, I wanted to give them the number of the corporate office of the GEO Group in Florida, so they would call them on their downtime and ask them what it was like to run a slave plantation.

I met the sanest and most insane people in the Seattle-Tacoma area.

Why sane? If I told you that a human rights atrocity was in your backyard, that human beings were being held as slaves, that it was essentially 1859 where you lived, would you still spend your downtime watching television or reading books?

Why insane? I saw signs which read "Save a life. Kill a cop." I saw a Soviet flag and it felt a little odd to use the symbol of the Gulag to fight another atrocity. To be fair, I saw other signs and paraphernalia that I didn't have a problem with, like a Palestinian flag, and shoutouts to the indigenous community. People wore shirts protesting for LGBTQ rights and against Citizens United. A meeting was held, regarding how the protesters were to hold the space. And all I kept thinking was "How is any of this going to free the slaves?" There was a little too much me and I here. Intersectionality had taken the focus off the people in our vicinity suffering the most.

I make nasty phone calls to the GEO Group partly — mostly — because it feels good, because it works off my rage. But I am also of the belief that it does at least some good. It makes comfortable people feel uncomfortable, and that for all I know maybe one or two people will leave that job if their consciousness is awakened. People leave hate groups with even less prodding. I figure I'm not doing any harm one way or another.

I know plenty of people whose beliefs align 90-95% with those of these protesters. (They'd be cool with everything except calls to kill cops and the hoisting of the Soviet flag.) They work as prosecutors. They work in government. They work in faith-based human rights organizations. They're doing good work too. They're not opposed to protest, but they don't see protest as an end in itself.

There needed to be more people at the Detention Center. And even though I hate to give in to the politics of respectability, there needed to be men and women in their Sunday best, middle-class accountants, priests, and rabbis. And they needed to occupy the street and block all traffic in and out of the facility. That would be my fantasy at least.

Then again, there is something about protest for its own sake, for protest being an end in itself. A declaration to anyone who will hear that you will not accept slavery as normal. It might not free anyone. But it's worth something.

Tuesday, June 26, 2018

On Waiting for the End

There's a character we know both from news reports (Bill Cosby now, previously Anthony Weiner, and before that Rod Blagojevich), and from the movies (The 25th Hour [Spike Lee, 2002], Creed [Ryan Coogler, 2015]). It's the man of privilege waiting for his prison sentence to begin. In the movies, they're looking to do something significant in one way or another before they go underground, whether it be a night at a club and tying up loose ends, or winning one last major boxing match. In the former, they're just waiting. I'm waiting too. There are things I want to do, but can't. Although I have the energy for it, the nature of my surgery means that no, I can't go on one final hike before my chemo starts. I can't go for another run. I may go for a drive somewhere before I meet my oncologist on Monday. For the most part, I'm just doing what I expect I will be doing when my immune system starts to take a serious hit, I lose my hair, I grow fatigued, I lose/gain weight. I don't feel dread for myself. Far from it. I am about to experience something I haven't experienced before and as awful as it sounds, I still can't quite imagine how painful or not-so-bad, liberating or humiliating it will be once it starts. Losing a testicle was hardly the tragedy I would have imagined it to be six months ago. So why should chemo be so terrible? I expect to be unpleasantly disillusioned.

Some people, when faced with a terminal illness, forgo treatment altogether. They go for an insane trip. Where would I go? My top four are now Japan, Buenos Aires, Alaska, and Lebanon. Is there a book I would consider a must-read? I don't know. The Bible. Some people reconnect with all the old friends they've let fall away. I've been making an extra effort to reconnect this past year, mostly by getting off Facebook, picking up a phone, and writing lengthy emails.

Other people, when faced with a terminal illness, fight the inevitable by maintaining their normal routine — a routine they enjoy — up until the last moment. Of all the teachers I knew from high school, the one I may have learned the most from was a math teacher who died of cancer. She was in and out of the school, and one day in senior year, she substituted in my class. She just sat at a corner while we worked on a set of problems our regular teacher had prepared for us. I couldn't figure out a problem. She patiently helped me make a connection. She walked me through step by step. I had good math teachers before. This one was a master of her craft. And then she went home. And a few months later, she was dead.

I expect to have many decades ahead of me. But this illness, like all illnesses, is a trial run for the finale. And this week is giving me at least some hint of how I will handle the end when it comes.

Saturday, June 23, 2018

On Suffering as a Human

Yesterday, I received my pathology report. The results are no better nor worse than what everyone had assumed the day before my surgery. Yes, it was definitely cancer. It has spread to two lymph nodes, but the growth is small. I'll have to see an oncologist and likely go through chemotherapy, but the situation is hardly dire. I'm not being an optimist when I say I'll survive this thing with few scars. I'm being a realist.

My euphoria of the first week, brought on by a combination of an evolutionary survival instinct to cope with a 180-degree turn in my reality as well as prescribed medicine, is over. I had an hour of despondency yesterday that was more a come-down from a high than anything else. I'm back to my normal little sad/little happy self. There is comfort in knowing that everything my body has experienced post-surgery is normal, predictable. The yellowing of the skin around the scar in my lower abdomen is a thing that happens to people. The bruising in the groin area is a thing that happens to people. My reaction to Vicodin places me in a minority, but, yes, that too is a thing that happens to people.

(I will take note that the Bizarro version of me that is a 37-year-old with adult responsibilities, like children and a job that I need to put food on the table, would probably have a very different reaction to this experience.)

I think it was Oscar Wilde who said that the purpose of socialism is to make us stop suffering as animals and start suffering as humans. My love for animals makes me a little uncomfortable with that formulation, but to take his point, I am most definitely suffering as a human and not as an animal.

The indignities of the privileged are not the same as the indignities of the poor. An undocumented immigrant in the Northwest Detention Center in Tacoma, Washington, who works for $1/day because people in the GEO Group's corporate office in Florida think this is a completely ethical way to make money, and starts feeling pain in his right testicle which he ignores, is a beast of burden. If anyone is going to be among the 4 percent of testicular cancer patients who don't survive, it will probably be him.

When Donald Trump was elected president, I felt nothing but dread. Now, I feel disgust. I never understood some of my progressive friends' love for Hillary Clinton. I voted for her because, good god, look at the alternative. But, and I am no expert, my reading on the issue of these last few days,suggests that the stalwarts of the Democratic Party, even if they did not actively build a system that criminalized millions, made things a little too easy for the opposing party to support interests that would profit from that mass criminalization, that made it that much more likely for the undocumented immigrant in the Northwest Detention Center in Tacoma, Washington to die of the single most curable cancer in men. (Fun Fact: Senator Patty Murray [D-WA] accepted $5000 from the GEO Group for her 2016 campaign. I called her district office to let them know that I found this very disturbing. I left my number and said that she was free to call me anytime to explain why she accepted what I did admit was a small sum.)

There are at least two ways to react to the Trump presidency. The first is to fall back on classical liberalism, which is to say a faith in institutions to slowly and carefully correct for the most atrocious atrocities, like the torture of immigrant children in the Shenandoah Valley Juvenile Center. The other is to become radicalized, to take matters into our own hands and shut down every ICE office in the country, and raid the GEO Group's office in Florida. On Mondays, I'm a liberal and don't feel great about it. On Tuesdays, I'm a radical and don't feel great about it.