Jay Lake (jaylake) wrote,
Jay Lake

[personal|cancer] Hope and despair

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.

Tags: cancer, child, family, friends, health, personal, radiantlisa
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