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[cancer] There’s a fog in the lowlands

Last day or so my emotions have been pretty foggy. As I told , “My head’s full of chowder, so ignore everything I say.” Monday afternoon K— came and watched movies with me. Yesterday afternoon I went to the not-Fireside Writers Group and actually Got Stuff Done. This morning I kept a trainer appointment at the gym.

Somewhere in the middle of working out, my head cleared again. Hooray for endorphins! I have no idea if it will stay clear today — my pre-test anxiety has been pretty powerful. But it’s nice to feel like myself and not some peevish git, at least for a few hours.

I’m on clears today, no food at all tomorrow until after the colonscopy, then only very light intake until after Friday’s CAT. will be here this evening. By Friday afternoon all this upset should be gone like summer morning mist.

[cancer] The Fear, nibbling

So I haven’t been having a full blown attack of the Fear, but I seem to be slipping into an increasing maze of worry and emotional unreliability. The one year followups are Thursday and Friday. Oversimplifying, that’s where I get to find out if my life goes back to normal. If my colon, lymph system and liver are clean, the cancer wasn’t aggressive, and life goes on. If I’m developing new polyps, or have spots in lymph or liver, the cancer was aggressive, and we do whatever we need to do next.

I’m tired of the Fear. (Which I think means it’s losing its power over me, but not this day.) I’m tired of being cancer boy. I’m healthy and fit — more so in both cases since last year’s illness than any time since my college years. Life is good. I have the love of and , I have an interesting writing career, I have a stable Day Jobbe. I don’t want to go back to cancerland. I want to keep this normal life I won back at such cost.

Nobody thinks I’m going to get a return ticket to cancerland. My doctor is optimistic. My baseline health is a terrifically positive indicator. But until they’ve gone in and looked this Thursday and Friday, we don’t know. And the Fear has developed a conjoined twin; the Doubt. In some ways, the Doubt is tougher. I can shrug the Fear off, I know it for what it is. The Doubt has a tinge of reasonableness to it which the Fear never achieved.

I grow my own monsters, thank you very much. Both in my gut and in my soul. I can slay them. And I will.

But they’re still real.

[cancer] Dreams of darker days

Had my first cancer dream in a long time last night. Normally I’m a lucid dreamer, or at least pretty self-aware, but this was one of those dreams that felt real while I was inside it. I’d gone in for some tests (as I am in fact doing on May 14th and 15th), and they’d found a new cancer. My throat, I think, though that part of the dream is fuzzy now, in retrospect.

In my dream, I got out of the doctor’s office and called . I was just in tears. I found myself on the phone with her, trying to convince her that this was not a bad dream, that it was really happening. Which was, of course, my lizardbrain trying to tell me this was a dream, but that’s not how I experienced it in the moment.

By the time I woke up, I’d sorted out the fact that this wasn’t really happening to me, but it certainly speaks to my anxiety and trepidation at the upcoming screening. Which will be at in person, thank Ghu.

[cancer] The Fear pays me a visit

Settling in on the plane, I made a casual joke to my seatmate about how any day you wake up above ground with no bars on the window is a good day. (No, it’s not that funny, but it had context in our brief conversation.) That bit of silliness opened the door to the Fear.

The Fear is never too far from the place behind my eyes where the “I” lives. Legacy of the cancer, for me, of course. I never had it before getting sick last year. Though there are certainly other kinds of fear, this one is my own special brand. My digestion has never been quite the same since the cancer, so even without wisecracks or occasionally noticing my surgery scars in the bathroom mirror, I have an everpresent reminder.

Now, of course, the anniversary of the cancer approaches. I’ve never been big on special dates. Probably legacy of the moveable feast that was my birthday in childhood. We moved every year or two — the longest we stayed in one place was three years, once — and always right at the end of the school year, where my birthday falls. Even on years we didn’t move, we tended to take family vacation or home leave right then. My birthday was celebrated far more often at random times than ever it was on the date of my natal anniversary, often more than once.

So it is with the cancer. No one knows when it first began. I don’t have April 29th circled on the calendar to mark its visible onset in my life via ER ambush. In fact, that’s a date I have to look up. May 9th, the date of my surgery, is engraved in my consciousness, perhaps because I approached that event with malice aforethought and much worry.

A cancer season has been added to the calendar of my life. Right now and for the next few weeks to come the wind blows out of the sign of the crab. My scar aches in my mind, even when the seam in my body is quiet. We will celebrate this season, my body and I, with observances of the Fear, bouts of unpleasant memory, a continual carrier wave of gratitude, and (on May 14th and 15th) medical tests to ferret out any evidence that my most intimate enemy has not yet left the stage.

Afterwards, there will be a party with my family, a few close friends, and . A way to banish the Fear until the next cancer season. Or, if the worst happens during the tests, a way to celebrate a new cancer season, and launch me on the path of its defeat.

[cancer] Why I talk about the Fear, and about cancer in general

Blog traffic has built a lot in the past year, and there’s always churn in my readership, so I thought I’d touch on why I talk about the Fear, and cancer in general.

Late in the evening of March 29th of 2008, I was admitted to the OHSU Emergency Room for very serious rectal bleeding. As it happened, I’d had a hematocrit test that morning, so we were later able to establish that I’d lost 25% of my blood volume in an 18-hour period. I collapsed inside the ER with blood pressure too low to measure. Various urgent medical procedures ensued. On March 30th, I was diagnosed with colon cancer, Tubulovillous adenocarcinoma with suspected lymphatic involvement.

I immediately made a decision to go very public with this. Some of that is just symptomatic of my pathological extroversion, but more of it was due to the secretive and shameful nature of cancer. In some very real senses, “cancer” is the last dirty word. I blogged all through the process of diagnosis, treatment and recovery. I talked about the funny bits, the stupid bits, the painful bits, the emotionally damaging bits, and the hopeful bits. See here for the history: [ jlake.com | LiveJournal ]

Why?

Because it shouldn’t be a secret. Because far more people than you and I will ever realize have gone through these experiences. Maybe the gal in the cube next to yours at work. Maybe a friend who never mentioned his prostate cancer from fifteen years ago before you knew him. Your boss, your pastor, your grocery store clerk. And while everyone has the absolute right to as much privacy as they wish, no one should be forced to make this journey alone.

My cancer so far has been an amazing gift, filled with hope and benefit and growth for me and many people around me. After these next round of tests on 5/14 and 5/15, I’ll be as close to clear as I can be before the five-year survival clock is run out successfully. My story came out well, despite the Fear and the pain.

Not everyone’s does.

So I talk about it, because I can. It’s my personality, and I have a platform to reach many eyes and ears. Because maybe in talking about it, I can lend courage to other people. Maybe in talking about it I can grant understanding to other people. Maybe in talking about it I can make others’ experiences a little better. Maybe in talking about it, I can steal cancer’s power away, and give it to everyone who desperately needs a piece of that power for themselves.

And ultimately, talking about is what takes away my own Fear, lets me love and and everyone else in my life as fiercely and as powerfully as I do.

Thank you for listening.

[cancer] Return of the Fear

Walking out of the pharmacy today (on a non-cancer-related errand) I was struck by the Fear again. It hit me hard and fast, my breath shuddering in my chest. I managed to walk it off, or so I thought, until I got home. Pulled into the driveway at Nuevo Rancho Lake listening to “The Ballad of Pancho and Lefty”, which is a song that can bring tears to my eye on a good day. Carried some boxes of stuff for inside, and just lost it completely.

And once again, talked me off the ledge, all the way from California. Because that’s the kind of thing we do for each other.

I know why the Fear is coming back. The year anniversary of the initial hospital admission is almost upon me. The surgery anniversary is in a month. The one-year followup tests just after that. That trainload of stress is gathering speed. Sometimes I’m very, very afraid I’ll have to back to cancerland, be slow again, maybe die this time. Most of the time I know better, much better.

But the Fear is tricky.

And I hate being its victim. Even for a moment.

[cancer|awards] Hugos

METAtropolis by John Scalzi, ed. Written by: Elizabeth Bear, Jay Lake, Tobias Buckell and Karl Schroeder (Audible Inc) has been nominated for the Hugo in the category of Best Dramatic Presentation, Long Form. We believe it’s the first audiobook ever nominated for a Hugo.

This is very special to me because my novella in METAtropolis, “In the Forests of the Night”, is the first piece I wrote when recovering from cancer surgery. It’s the piece that scared the hell out of me, because until I’d written the story, I didn’t know if I still had “it” as a writer. It’s also the piece I was struggling to work on when I very first met .

Thank you Steve Feldberg of audible.com and John Scalzi for moving the deadline after I got sick so I could stay in the project. Thank you Elizabeth Bear, Toby Buckell and Karl Schroeder for putting up with my flakiness. And my special thanks to everyone who nominated METAtropolis.

Because that story is testament to my kicking cancer’s ass.

[cancer] A brief return of The Fear

Longtime readers will recall my Excellent Cancer Adventures of the past year. Had my quarterly followup with my cancer surgeon today, during which we scheduled the colonoscopy and CT scans for the one-year followup this coming May, just after the one-year anniversary of my surgery.

Afterwards, in the car, I had an outbreak of The Fear. (See also here: [ jlake.com | LiveJournal ].) I’ve recently experienced an odd moment of grief [ jlake.com | LiveJournal ], and since then, some deep melancholy, on the day Escapement Powell’s | Amazon ] was released in mass market paperback. (That was an echo of the fact that I first went into the hospital on the day that Mainspring Powell’s | Amazon thb | Audible ] was released in mass market paperback.)

This was different.

I’d been talking to my doc about what we were looking for in the tests. Specifically, tumor recurrence in the colon, lymph system or liver; as well as any polyps which might have been too small to be detected last year when various medical professionals went spelunking in my fine and private places. This was pretty sobering, although not particularly alarming in medical terms.

After the consult, I felt fussy, angry, stressed out. I sat in my parked car talking to about the tests and what they meant, then suddenly burst into tears. Just overwhelmed.

Because I am afraid of what we might find.

My doctor is as optimistic as he can be, but until we look, we will not know. We must look, we must know, but for a few minutes I was back in the Big Cancer Fear of last April and May. was very sweet and understanding, talking me down in part by telling me I’d gone to a dark and scary place. In the context of colon cancer, this suddenly seemed very funny. It’s hard to laugh and cry at the same time.

The fear is purely emotional. Medically I’m as good as I can be. These tests are purely risk management and good followup. Yes, something might be there, but if it is, I’ll beat that like I beat this last round of cancer. Emotional or not, it’s real.

And today I realize that the Big Cancer Fear will never really die. It doesn’t keep me awake at night or stalk my dreaming mind, but it’s with me. It always will be. With my own strong heart and the love of my friends and family, I will always be better than The Fear.

[cancer] Flashbacks

Sitting in my stylist’s chair this afternoon. He’s quitting smoking right now, and he’s being kind of bitchy. He also had some serious gas, and kept going out the back of the salon. We were passing fart jokes, when I made a comment about the experience of having colon surgery. It suddenly hit me that part of my body was missing, gone. Just a deep emotional wallop.

So weird, in a moment of grade-school levity, nine months after the fact, I start missing a diseased ten inches of my digestive tract.

Sigh.

[books|contests] Green

Well, this morning I sent off the completed galley edits of Green.

This afternoon, the ARCs arrived:

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Photo by

I guess it’s a Green day in my world!

ARC contest number two is now open. Tell me in comments why you should win an ARC for your own reading pleasure. Voting poll next week.

[cancer] Redefining myself

I don’t talk so much about the cancer these days. Not that the disease has receded from my consciousness — it has become an ineluctable part of me, and I can no more cast it away than I can cast away my childhood — but rather, I don’t want to be defined by it.

Yet I am. When I see infrequently-encountered friends, I am constantly asked about my health (excellent at this point, if you’re new to the blog and missed the adventures of last spring). When I examine my writing process and the words on the page, I see its pale ghost. When my daughter expresses a fear about a family member’s health, I know she remembers me in the hospital bed.

My six month post-surgical followup is this Tuesday, a week or two early. I wanted to get it done before WFC, just because. Not everything works the way it did before; physically, mentally or emotionally.

The redefinition of me cannot be denied. So what I have done since the very beginning of this odyssey is take control of that process, so I redefine myself, instead of being redefined by the cancer and the echoes of its discontents. From time to time I’ve mentioned the gifts of cancer, but this may be the greatest of them: how much I have taken control of my own life and health.