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[personal|cancer] Hope and despair - Lakeshore — LiveJournal
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Jay Lake
Date: 2013-01-15 05:47
Subject: [personal|cancer] Hope and despair
Security: Public
Tags:cancer, child, family, friends, health, personal, radiantlisa
Yesterday was a particularly challenging day for reasons only tangentially connected to my cancer. Tomorrow I see my surgical oncologist, the pre-operative nurse practitioner for screening, and my therapist. (That makes for a half sick day from work right there.) Today I am in what will hopefully be a trough among the cavalcade of stress and woe.

One bright spot on yesterday was spending an hour with my dad over coffee. (Well, soda for him and hot chocolate for me, but the principle remains the same.) We don't actually have a lot of one-on-one time, he and I, because I'm usually with [info]the_child and/or Lisa Costello, and he is usually with my (step)mom. We talked a lot about the Acts of Whimsy fundraiser, and my forthcoming surgery, and the current state of affairs in the extended family.

Then he brought up my recent sharp negativity. Dad is a retired U.S. ambassador and a former Deputy Assistant Secretary of State [ wikipedia ], and is extremely diplomatic in both the metaphorical and literal senses of the term. He is careful how he phrases his thoughts, and he was very careful with me, saying that he and Mom were concerned about how upset I've been since the news of Ashcroft, my fourth tumor, broke. As the current family issues erupted about the same time, I have been emotionally and logistically overwhelmed literally every day for this past week and a half. (Keen-eyed observers of my blog may have noted zero writing time during what should have been my main writing window during this surgery break.)

If you know me at all, think about that. I'm so stressed out I can't write, even though I'm no longer subjected to chemo-induced writer's block. In over a decade of being a professional writer, I've never had writer's block in the usual sense for more than a two or three days in a row. Until now.

My despair is showing through. In ways that are alarming my family. In ways that are probably undermining my own treatment course. Lisa Costello and I have spent time discussing this quite frankly. My therapist is very concerned. What I've said to both of them is that my day-to-day life is still a joy to me, but my sense of the future has retreated to a deep and profound negativity.

Even the amazing response to the Acts of Whimsy fundraiser hasn't been enough to shake me out of this emotional pall.

Over the past few years, hope has been frankly poisonous to me. Every time I've started to have serious hope, I've been shot down by another round of cancer, another round of bad news, to the point where even proudly logical me has become immersed in that species of magical thinking that says, "If you hope, you'll just lose what you hope for, so better to despair and have the potential to be pleasantly surprised, than to hope and be shot down yet again." I can only stand to have my head pounded into the metaphorical concrete so many times, and I'm past my limit.

One of my longtime (i.e., pre-cancer) coping strategies for stressful events and situations is to "run to the edge". In other words, I visualize what the worst possible outcome could be, and work backwards from there. This generally worked for me, because things rarely if ever came to the worst, and it allowed me to be pleasantly surprised even by relatively difficult outcomes. Under this rubric, if no one died or went to jail, I was doing okay.

The problem with applying that strategy to my cancer experience is that I have on a number of occasions experienced outcomes that were even more terrible than my envisioned worst possible outcome. The coping strategy has failed me through a combination of insufficient imagination on my part and overwhelming medical setbacks. I've painted myself into a corner.

Oncology is infested with what Barbara Ehrenreich calls "the cult of optimism". The reality is that cancer sucks, and half the people who are diagnosed will die of it, many of them prematurely. (Bear in mind this includes all those relatively minor skin cancers that get zapped or frozen off in dermatologists' offices every day — I don't know the statistics for cancers internal to the body, but they are obviously much worse when you factor out melanomas and whatnot.) Yes, treatment outcomes in any area of medicine vary according to patient attitude, but as far as I can tell, this has a lot more to do with being an attentive, proactive patient who follows their treatment courses carefully and shares information with their doctor than it does with being a happy warrior.

While I am a very, very unhappy warrior, I am also a very proactive and engaged patient. Almost certainly annoyingly so, from my oncologists' perspective. Though they are very professional about dealing with me, this is my life.

Right now, I'm really not capable of hope. Not in a large scale sense. If the whole genome sequencing of my tumor produces a new treatment direction, that may change. Otherwise, the trend of my illness is sharply unfavorable to me making any long term plans.

My despair, however, is poisoning the people around me. So apparently I must now put on my happy face for the sake of the people who love me, and whom I love. I'm not good at living lies, which at the moment this absolutely will be. But I'm not comfortable with the social aspects of my illness, either. No matter which way I turn, I'm doing something wrong.

It's a hell of a trap. Fuck cancer.

Post A Comment | 23 Comments | | Link

User: mevennen
Date: 2013-01-15 14:04 (UTC)
Subject: (no subject)
Jay, I don't really know what to say except that the people around you are just going to have to suck it up and cope as best they can. I've now been in this position several times (I'm sorry, by the way, to keep bringing this back to my personal experience but it's the only experience I have directly) - with C, who died, and with T and my father, who are, thankfully, both with us. Both my married cousins have brain tumours and another cousin is in remission for breast cancer. It is awful, but I wouldn't expect it to be anything else. And if the person with cancer is negative - who can fucking blame them?

I really don't know what people expect, but ultimately, you are the one up the sharp end and everyone else will have to deal with it and whatever emotions you bring to the party. You don't owe any emotions to anyone else. This is undoubtedly rough on them but it is rougher on you - you're the one with cancer: they are not.
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W. Lotus: Pink Lotus
User: wlotusopenid
Date: 2013-01-15 14:29 (UTC)
Subject: (no subject)
Keyword:Pink Lotus
I second this. As you said, Jay, this is your life, not their feelings. I can understand keeping your despair from The Child, as she is not yet an adult. But everyone else is an adult and needs to be there for you, not the other way around.
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User: radiantlisa
Date: 2013-01-15 16:31 (UTC)
Subject: (no subject)
All of this. Both of these. Please listen to this wisdom.
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Submarine Bells: backlit
User: submarine_bells
Date: 2013-01-15 22:33 (UTC)
Subject: (no subject)
I concur.
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User: anghara
Date: 2013-01-16 00:03 (UTC)
Subject: (no subject)
I third this. I can only imagine how hard this had to be on EVERYBODY, on all the people whom you love and who love you, precisely BECAUSE of that love. But you yourself have a limited supply of life energy right now - for plenty good reasons - and misusing any of that on pretending to put on a happy or a happier face just because it makes everyone else feel better is a waste of resources. I am not saying to give in to despair and sit back and howl. No. But the grown-ups around you need to cope with the simple fact that they need to be a support for you right now, and not a drain.
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User: klwilliams
Date: 2013-01-17 22:35 (UTC)
Subject: (no subject)
Except for your daughter, who is still a child, yup, I agree with this. Your father and your mother are still your parents, no matter how old you are, and need to be your parents through all this. Everyone else is an adult and can deal. It's your life, not their feelings, that matter.
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User: keikaimalu
Date: 2013-01-15 14:28 (UTC)
Subject: (no subject)
I think there are times when hope is the wrong goal. As you say, it can become so wearing to stumble and fall over and over that taking a breather from hope can actually be helpful. You can only take that dive so many times before deciding not to get up for a while.

I know how hard cancer is on families; I've seen it destroy them. And while in physical ways, it's harder to be the patient, I'm not convinced that it's easier overall to be the kin. When you die, you're gone. When you lose a loved one, you grieve and hurt. Both sides know that.

I hope you and those around you find the right balance in dealing with all this. Mortality is a horrific truth, and being smacked in the face with it daily makes it impossible to pretend it isn't there, which is how most of us cope with living our lives.

I also hope this all gets easier for you, somehow. Not sure what form that would take. Just -- easier. Gentler.
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chessdev: alien
User: chessdev
Date: 2013-01-15 14:39 (UTC)
Subject: (no subject)
I dont know what to say or have words of wisdom to give, but am hoping this despair somehow goes away soon...

Hoping for you sir
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User: mcjulie
Date: 2013-01-15 15:37 (UTC)
Subject: (no subject)
I don't think the people you love are trying to torture you by expecting optimism, but Flying Spaghetti Monster preserve us, no matter how much they love you, THEY HAVE NO DAMNED RIGHT TO EXPECT YOU TO ACT HAPPY.

If they have legitimate worries that you might need additional counseling, or that you might be planning on checking out prematurely, okay. That's one thing. Maybe you can put their minds at ease.

You have the right to your negative emotions.

Hope is meaningful as an action, not a feeling. You're taking the action -- continuing your treatment, continuing to take care of yourself, continuing to struggle to stay alive as long as you possibly can. That's the hope that matters.

Hopeful feelings are just feelings. Humans have a lot of feelings. Our feelings are interesting, but we can have the same feelings from reading and watching made-up stuff that never happened.

Really, I think what you're learning here, is that your negative emotions have scared them. They pierce the bubble of denial. Too bad. That shouldn't be your problem. You've got enough to deal with.
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User: threeoutside
Date: 2013-01-15 16:39 (UTC)
Subject: (no subject)
100% concurrence here.
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User: radiantlisa
Date: 2013-01-15 18:03 (UTC)
Subject: (no subject)
This, this, this. Thank you.
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User: skellington1
Date: 2013-01-15 18:42 (UTC)
Subject: (no subject)

The cult of optimism is a dangerous, insidious thing. You don't need the stress of faking optimism for someone else's benefit.
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User: voidampersand
Date: 2013-01-15 16:03 (UTC)
Subject: (no subject)
Hope is not expectation.
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User: inflectionpoint
Date: 2013-01-15 21:35 (UTC)
Subject: (no subject)
Then what is it?
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User: voidampersand
Date: 2013-01-16 05:49 (UTC)
Subject: (no subject)
If you have a highly predictable satisfactory outcome, you don't need hope. You don't hope the sun will come up tomorrow, or the next day, or ten years from now. You hope Jay will be there ten years from now to see it.
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User: daveraines
Date: 2013-01-15 16:15 (UTC)
Subject: (no subject)
Once somebody said something that was helpful to me: "Hope is what's left when optimism has fled." (Actually he put it in theological terms: "Hope is what's left when Robert Schuller stops smiling.") (You younger folk: substitute "Joel Osteen" for Robert Schuller, lol.)

I'm not sure what that means to you. Actually, I'm not sure what it means, period. I just know it helped me.

But I'm not you. The place I find hope is way different from where you would find it. And, most significantly, nothing as dreadful as your cancer has happened to me. From this distance, it looks like you're handling it pretty gracefully. So I'm sorry that your internal experience is so painful.

Nor do I know what it means to live a full life in your situation, but I think it must involve honest emotion expressed in relationships of love. You seem to be doing that, too.
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User: shelly_rae
Date: 2013-01-15 16:46 (UTC)
Subject: (no subject)
No pink hats here Jay. But I'm still here. You may have noticed my small attempts at turning to positives. Of anyone I do understand, I live it everyday. I'm going to be 50 next month, yep, 30 years, 30 fricking, wonderful years, with my "we don't know how to cure this" diagnosis. It's not gone, yet. But I am who I am.
Can you go out into the sun yet? If you can, I highly commend it.
Good luck. Be well. Carpe diem dude.
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(no subject) - (Anonymous)
User: kshandra
Date: 2013-01-15 18:08 (UTC)
Subject: (no subject)
It you can't be authentic, don't fake it.

This. Right here.

When gridlore was first diagnosed (and I'm sure he'd be telling these stories himself if this was not currently a one-computer household), the best advice he got was from one of the nurses on the cancer ward at Stanford (many of whom were survivors themselves), who told him "If you're having a bad day - go with it." Let it suck. Curl up in a ball and be fucking miserable. Because the longer you ignore it, the longer you grit your teeth and tell everyone 'no, really, I'm FINE,' the longer you'll be stuck in the morass. And the people around you can either learn to duck, or come back when the storm has passed.
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User: torreybird
Date: 2013-01-15 19:01 (UTC)
Subject: (no subject)
When first skimming, I read:

"Tomorrow I see... the pre-operative nurse practitioner for screaming..."

and I thought: Good thing there's a plan for that. Sounds like some screaming, railing, gasping, despairing is in order, and what else do we have our voice for, but for crying out?

Your posts are so thoughtful, poignant, and rational. Not that you need permission from this random commenter, but if it would help to add to the chorus: there's no wrong way to FUCK CANCER.
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User: angiereedgarner
Date: 2013-01-15 19:53 (UTC)
Subject: (no subject)
Did he indicate that your despair was poisoning others? Are you sure he was bringing it up in order to nudge you to put on the happy face? Could it have been letting you know he is not oblivious that things have taken a sharp turn, and he cares?

I'm asking because having loved ones demand me to be A Perky Patient while fighting for my life is def. one of my own worst case scenarios. It seems really important to be sure this is what is actually happening and not fear (of a kind of abandonment).
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Jay Lake
User: jaylake
Date: 2013-01-15 20:17 (UTC)
Subject: (no subject)
Oh, this was and remains very well intentioned. Dad is not even remotely passive-aggressive. He was and is concerned about my health, and how my emotions affect my teen-aged daughter.
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User: martianmooncrab
Date: 2013-01-15 21:02 (UTC)
Subject: (no subject)
Oncology is infested with what Barbara Ehrenreich calls "the cult of optimism".

I would rather join a different cult, one with lots of self administered excessess.. sigh. It was at this point in my friends cancer treatment I had to put him in The Happy Place for a couple of weeks for an emotional tuneup as it were. (see what happens when you give someone a very broad Power of Attorney over your life) and he pulled it together to complete his treatment.

Wallow for a bit, you dont have to be upbeat all the time, but really, you can cut back on beating yourself up for now cuz cancer is doing that for you.
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russ: zen
User: goulo
Date: 2013-01-15 21:38 (UTC)
Subject: (no subject)
> What I've said to both of them is that my day-to-day life is still a joy to me, but my sense of the future has retreated to a deep and profound negativity.

May you continue to enjoy the good joyful stuff (and regularly scheduled wit and erudition) that's there day-to-day.
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