Category: Cancer

I feel as if I am counting down to something. But I really am only counting down to the past. There is nothing specific ahead, except "continue living." I feel as if I have abrogated all those sweeping "bucket list" goals I spent so much time outlining and meditating on during the depths of my illness last summer, and now there is only each day. 

This isn't completely bad, of course. It's good to live "in the moment," as they say. I need those sweeping goals, though – otherwise, the aimlessness of life underwhelms me and leaves me feeling purposeless. 

I am neglecting the social stuff – work is highly social, of course, and my schedule is very, very busy these days. Consequently, when I'm not at work I have no desire for human contact or interaction. I ignore the "social media" with the exception of this odd, one-way communication that is my blog. That's ok, I guess, but I know some of my friends and acquaintances become annoyed. If so… I'm sorry. 

And… today was a really depressing day. Was it depressing because I was already depressed, and thus I only saw the bad parts? Or was it objectively depressing? I had a completely new schedule – meaning unfamiliar classes (although I know almost all the students well enough). I was inadequately prepared. I have huge pile of correcting and grading and evaluations hanging over me… undone. At the end, it was capped off by some unwanted, negative feedback conveyed from parents. Stupid complaints: the typical stuff, parents who think they know English better than the teacher and want to second guess what teachers say, or how they correct their students' work, or whatever. I have no time for that crap.

Without a doubt, I'm depressed, lately. Am I more depressed than I was last May, when I was sick with cancer and didn't know it, and when I was in constant pain and dissatisfied with work? Hm… I'm now recovering from cancer, rather than unknowingly sick with it. But I still have constant pain, I'm still dissatisfied with work, and now I have my new food miseries as well as the gloom of my mortality hanging over me more prominently than ever.

Overall quality of life? 30%. Has it been worse? Yes. Has it been better? Yes.

What I'm listening to right now.

Digable Planets, "Graffiti feat. Jeru The Damaja."

[daily log: walking, 5 km]

Post-scans update: according to Dr Cho, there's "nothing there." That's a good thing.

All clear.

His biggest single advice to me RE my issues still with eating, phlegm and periodic coughing fits was: water, water, water. I already drink more water than I used to, but his advice reminds me that I could probably do yet more. I'm trying to always have a cup of water or bottle around, but it's never been a habit of mine so it's sometimes hard to remember. Definitely I drink more at night, waking up every few hours because of my dry mouth.

Anyway, I am once again grateful to be embedded in the South Korean healthcare system: for 35 bucks (about $200 before insurance) I got scanned and consulted and followed up on, and everyone I interacted with, from the accounts desk (수답) to the techs and doctors, was efficient and kind and patient. Thankful to be in walking distance of a great, global quality cancer center in a country that isn't so terrified of socialism that they think healthcare shouldn't be regulated.

Anyway, more later. I'm home for brief moment, and will head to work now.

What I'm listening to right now.

The Limousines, "Fine Art."

Lyrics.

You! You are a disaster
You are a master of the fine art…
The fine art of falling apart

How'd you manage to stab yourself in the back?
How'd you get your arms to bend back like that?

Me? I'm just a bastard
Another master of the fine art…
The fine art of falling apart

They're coming back to point and laugh and ask me:
"How'd you manage to stab yourself in the back?
How'd you get your arms to bend back like that?
How'd you manage to stab yourself in the back?
How'd you get your arms to bend back like that?
How'd you get your arms to bend back like that?"

Burn it down

You pour the gas
And I'll strike the match
And we'll turn our back on this pile of ash

And the only things left
Will be the bones of our promises

[daily log (11 pm): walking, 9.5 km]

July 4 – January 4.

Half a year ago ago this evening, I emerged from 9 hours of surgery. The tumor had been removed, my tongue was reconstructed. I was still alive. At the time, I was very happy about this.

I need to remind myself, sometimes, when things get frustrating.

What I'm listening to right now.

Jake Bugg, "What Doesn't Kill You."

Lyrics.

Step out the door 2 AM yesterday
Me and my friend keeping the night aflame
And as we're walking in the clear night blind
Two guys come up and take him out of sight
All I know is one thing they hit him hard he doubles up
They takes his money and they run and all I can do is watch them go
His hands are round his nose
His blood is on his clothes

What doesn't kill ya
What doesn't hurt
Sometimes you feel you're up against the world
What doesn't kill ya
What doesn't break
This life it seems
To bring you to your knees
You try you bleed then finally you breathe

She was the dream that kept me up at night
I couldn't face the world without her eyes
I never knew it till she disappeared
My life would be a bunch of souvenirs
All I know is what it is her heart she doubles up
She packs her bag and then she runs and all I can do is watch her go
I've lost all I own

What doesn't kill ya
What doesn't hurt
Sometimes you feel you're up against the world
What doesn't kill ya
What doesn't break
This life it seems
To bring you to your knees
You try you bleed then finally you breathe

What doesn't kill ya
What doesn't hurt
Sometimes you feel you're up against the world
What doesn't kill ya
What doesn't break
This life it seems
To bring you to your knees
You try you bleed then finally you breathe

Today is the six month anniversary of my cancer diagnosis. It happens to be Christmas day, too.

That makes it a good day for a rant about food.

Food is a part of the Christmas theme. My relatives ask me about how it’s going with my eating. My coworkers cannot stop offering it to me. My friends invite me out to eat.

Every day, I eat three meals, and each one is a kind of torture.

On good days, I just say, well, forget food! – it’s a luxuriant distraction anyhow; I can find satisfaction in other things. “Gluttony is a sin,” and all that.

But… food is so core to everyone’s social world. It’s what friends do together – they go out to eat. It’s how relatives show love or concern. It’s what coworkers do together. It’s how the boss rewards us. It’s how the parents of my students show gratitude. It’s what strangers first offer….

So by having these “food issues” that I am having, I end up having social issues, too. As an introvert and someone with social issues already, it’s the last thing I need or want. But I’m stuck with it.

In fact, sometimes I speculate that there is perhaps an aspect of karmic payback to this whole “food issue” that I’m suffering. To have this kind of problem, centered around food, is probably “just desserts” (haha get it?) for a man who has struggled with both anorexia and obesity in his life, at different times.

On bad days, I feel like my “deal with the devil” to stay alive and survive this cancer wasn’t even worth it. Will people just leave me alone about food? Please? I’m sick of it. Sick to death of it.

I can’t eat comfortably, but I can eat to stay alive. I prefer to eat alone, because the joy I take from eating, these days, is similar on the pleasure scale to the joy I take from vomiting – as such, it’s not something I want people to watch me experiencing.

I’m tired of being invited and pitied and queried and being-concerned-about. Food sucks. It may never be a fun thing for me, again. So that’s life. But frankly, I’m going to go live on a mountaintop alone, and eat my soft noodles in quiet-suffering-solitude, if all you people don’t stop bothering me about food.

No, I don’t want to go out to eat with you. No, it is not fun for me to sit and watch you enjoy your food. No, not just a bite of that cookie or cake because surely it’s not so bad as I say, thank you. No, I don’t know when it will get better. No, I don’t want your advice anymore about how to make things more palatable.

OK. That’s the last I’m going to post anything negative about food. When people ask me about it, I’ll point them to this post. If I have good news, I’ll share it.

Enjoy your Christmas. Be thankful for small things, like good friends and good food and… ah. Whatever.

What I’m listening to right now.

Santa Hates You, “Raise the Devil.” This is not an anti-Christmas joke. Santa Hates You is one of those German gothic-industrial groups I sometimes listen to, in my darker moods. They have a somewhat intellectual posture, within the genre.

I came out of surgery for tumor-removal five months ago this evening.

Quality of life, compared to 6 months ago, when the tumor in my mouth was rampant and as yet undiagnosed? Marginally improved. Less pain, overall – by quite a bit – but a lot of annoyance around the eating issues. Although slow, however, I do think there are small increments of improvement in that situation over time. So I look forward to returning more to "normal."

It was very foggy this evening when I did my circle in the park around the lake – so thick that the lights from the buildings in Ilsan were invisible from inside the park. The fog had that vaguely smoky smell that makes me wonder whether I'm inhaling toxic chemicals that have drifted across the Yellow Sea from China. Ah well.

The fog makes me think of my hometown of Arcata. Go figure.

What I'm listening to right now.

Kate Bush, "Hounds of Love." This song is old. It makes me think of cold winter days in St Paul in the mid to late 1980s.

[daily log: walking, 7.5 km; running, 3 km]

Stuff.

Life keeps happening. I noticed I'm still losing hair. I didn't lose much from the top of my head during radiation (unlike my beard which disappeared almost entirely – but that just makes shaving easier), but I've been aware that the rate of loss overall seems to have accelerated. I keep finding grey and white hair: Oh… that's mine, isn't it? Well, used to be…. goodbye.

What I'm listening to right now.

Elis Regina, "Retrato em Branco e Preto."

letra:

Já conheço os passos dessa estrada
Sei que não vai dar em nada
Seus segredos sei de cor
Já conheço as pedras do caminho,
E sei também que ali sozinho,
Eu vou ficar tanto pior
E o que é que eu posso contra o encanto,
Desse amor que eu nego tanto
Evito tanto e que, no entanto,
Volta sempre a enfeitiçar
Com seus mesmos tristes, velhos fatos,
Que num álbum de retratos
Eu teimo em colecionar

Lá vou eu de novo como um tolo,
Procurar o desconsolo,
Que cansei de conhecer
Novos dias tristes, noites claras,
Versos, cartas, minha cara
Ainda volto a lhe escrever
Pra lhe dizer que isso é pecado,
Eu trago o peito tão marcado
De lembranças do passado e você sabe a razão
Vou colecionar mais um soneto,
Outro retrato em branco e preto
A maltratar meu coração

My acquaintance Kelli (a former coworker from circa 1988) suggested, based on her own experience, that there is possibly a component of the cancer treatment process that leads to PTSD. I've been mulling it over, and it makes sense. That explains the slightly affect-less, semi-shell-shocked feeling I've been having so much of, lately.

I hesitate to use the term, though – both because it seems broadly over-used as part of our culture, and also because I'm not sure how I feel about it as a "diagnosis" at all. I'm not much of one for the DSM, when you get down to it. It's a lot of labels.

Partly, though, my feeling is it's just being back in the grind of work. I had been intending to plunge back into a kind of self-curative workaholism after the worst was over, and so… that's where I'm going. It's taxing, though – physically because I'm not in the best shape, and emotionally, because, well… work.

What I'm listening to right now.

Peter Murphy, "Cuts You Up."

[daily log: walking, 6 km]

Well… as far as we know, anyway, I'm cancer-free. How can we really know?

I think this a good thing – there are things in the world I still have left to do.

But… lately, as a part of the radiation therapy aftermath, I'm experiencing a discomfort level a bit worse than my last months before the surgery that removed my tumor, 3 months ago today. So from a quality-of-life standpoint, there's room for improvement. Sigh.

Work today went OK. I had two classes. It's so hard to talk, and I worry the kids are just being polite and can't understand a word I'm saying – though the possibility that a group of 2nd grade boys are being polite is actually pretty slim, on further reflection.

What I'm listening to right now.

Psychedelic Furs, "Alice's House."

[Update, 2013-10-05 8 am: My friend Jeannine had this comment on this blog entry on facebook, this morning, and I decided it must be included here, along with my answer:

Jeannine: Cancer-free…strange words. I'm sure you know much much more than I, but my rudimentary understanding of cancer is that cell replication goes haywire quite often – but usually our immune system gets rid of them before they proliferate into a tumor. So are any of us every cancer-free? All we can do, it seems, is nurture the ecosystem of our body and help it do its job for as long as we are given.

Jared: Jeannine is right – I know that very well. Though I doubt I know more than Jeannine (biologist!). All those cells are all just swimming around , and the immune system is swimming around playing "enforcer" and we hope everyone remains a team player. Point taken. The term "cancer-free" is essentially a misnomer based on a misunderstanding of the disease. That said, I'll play along with the misunderstanding because it's a manner of positive thinking: I'll believe I'm cancer-free, and hope the immune system is listening and stays with the program.]

[daily log: walking, 5 km]

Over the last three months my body has seen a series of catastrophic interventions: surgery, various invasive scans, a major infection and a second surgery, and then 7 weeks of cancer-killing radiation therapy.

I am now hoping these interventions are over, and that way I can focus on actually trying to build up my health and resistance once again.

Oddly, I feel very little of the elation I expected to feel upon  the end of my radiation series. Instead, I feel overwhelmed: overwhelmed by the fact that now, I should “get on” with my life. I no longer have any excuses, except the delay of my own body in “getting it together again.” I am a naturally impatient person – did I mention that?

Here is a picture of the technicians who did my therapy. I think the one on the left is an MD – but I’m not really sure. I didn’t really interact with them much – mostly they are in a little booth (protected from the radiation) while I was inside the machine.

I gave them a gift – some individual-sized cakes from a bakery across the street.

The lobby of the radiation building has a multilingual sign. I noticed something today for the first time – good to notice it on my last day there. What I noticed was that the language at the end is utterly messed up. Wendy thought it was mutilated French, while I wondered if maybe it was an attempt at Catalan. I’ve decided Wendy is more likely correct, but it’s very bad French, where someone may have forgotten to clear his template of some leftover Spanish, first.

I wonder if the other languages, that I don’t know as well, are messed up too?

What I’m listening to right now.

My Bloody Valentine, “When You Sleep.”

[daily log: walking, 9 km]