Jay Lake: Writer

[conventions|cancer] Norwescon Day Three, meltdown edition

Well, that long delayed cancer meltdown I’ve been wondering about finally triggered yesterday evening. I had an overwhelming amount of programming yesterday at Norwescon, was tired from the previous two days, and generally was feeling my mortality.

I realized yesterday that about my favorite version of myself is the fun, flirty, fast-moving me who comes out to play in conland. I was on, more or less, that way the first couple of days of this convention. And this is only the second time since the summer of 2009 that I’ve been able to be this person I really like most to be. Cancer stress, cancer treatment and chemo fatigue have either kept me away from these events altogether, or had me attending on a much more limited basis. The only real exception, oddly enough, was Norwescon of last year. Even that was tainted by just having received the then-new cancer diagnosis.

And, well, here’s the new round of tests coming in eight days from now. I am terrified I’m going to lose another year of my life to this disease and its treatments. Lose more of what I’ve struggled to gain, just as cancer has cost me writing time, parenting time, an entire major life relationship, teaching gigs, speaking appearances, many of the things I love most in my life. It even steals my waking hours.

This disease is a fucking thief.

I let myself get overworked and overtired yesterday, and it all caught up with me. In turn, stealing my evening from me. Just like I’m so mortally afraid it’s about to steal another year of my life and those things I love most from me.

lizzyshannon and I finally did make it up to the DAW party for a little while, but my heart wasn’t in it.

So the main arc of my Norwescon experience ended with a miserable whimper instead of the usual Saturday night crescendo of partying and frenetic socialization. I’ve got a panel today, then we’re heading home, where I can go back to my quiet everyday life, and spend this next week wondering if I’ll be trapped there for another year. Cancer, or at least the stress of it, certainly stole what should have been the peak experiences of this weekend.

Tags: Cancer, Conventions, health

Posted: 8:24 am Sun April 08 2012 | Comments(4) |

[cancer] The frustrations of the future

So much hinges on next month’s retests to try to nail down what’s going on with my new liver lesion. I can’t really commit to what I’m doing this year in terms of writing productivity, convention and conference travel, or even friend-stuff past mid-April.

I lost essentially half of the year each of the last two years to cancer treatments. My inability to commit to future dates caused me to be dropped from an important teaching gig. Chemo-induced emotional and mental distress contributed significantly to the end of my last relationship. I keep confronting my mortality in large ways and small. And now with so much going on in my life socially, emotionally, professionally, I’m once again staring down the barrel of the profound disruptions of cancer.

Even if this lesion is another round of cancer, what then? My oncologists have expressed differing opinions about the treatment courses. I only have one more course of chemotherapy available to me, then we’re pretty much done with that option. Do we use that last bullet in the gun on this go round? Do we have surgery only? What do we do next?

It’s pissing me off. Frustrating me. Making me angry and sad. I suppose some people would say that control is always an illusion, but cancer, even the simple threat of its recurrence, strips that control away and leaves me with uncertainty piled upon uncertainty.

Cancer sucks.

Tags: Cancer, health, Personal, Travel, Writing

Posted: 5:09 am Tue March 27 2012 | Comments(2) |

[writing|cancer] Staring up at the mountains of madness

I spent some more time yesterday working on the book proposal for Going to Extremes. I had to write the initial draft of the summary, make some other edits, do some cancer statistics research, and begin dropping text into the first chapter for the proposal’s sample chapter.

My experience of working on this Monday was almost joyful, where I had expected it to be stressful. My experience of working on this yesterday was almost stressful, where I had wondered if I might find more joy. Such a roller coaster, much like life itself, and especially cancer.

In a sense, much of this book is already written. My blogging trail on this topic is a deep reservoir of experience, emotion and first hand information I am already drawing on. Now I am finding the echoes of old pain and loss, past and current fears, everything.

Which of course is a large part of what this book is talking about. I’m in some danger of spiraling down my own navel on this one, I’m afraid, but I’m confident I’ll stay on track.

Still, it’s a pretty big challenge. And tackling the topic of death so soon after Mark Bourne’s funeral seems odd. Like it or not, this is my life.

Tags: Books, Cancer, Extremes, health, Personal, Writing

Posted: 6:38 am Wed March 07 2012 | Comments(2) |

[cancer] Update from the oncologists on the new liver lesion

Yesterday I saw both my medical oncologist and my surgical oncologist/liver specialist. They were fairly positive about my current situation. The general takeaway is that this new lesion in my liver is a very small spot. Neither of them is especially concerned right now, unless we see growth at the next scan.

My surgical oncologist opined that if it does turn out to be a tumor, it may be a leftover second site from my last round of liver metastasis. Their thinking is that if we do have to treat, we may do surgery (or radiofrequency ablation) without chemo. That’s certainly not the prescription at this point, but it’s a direction.

Whatever this is, even worst case it’s not a mortality event, just another step on the road.

My follow up is in mid-April, with a CT scan and bloodwork followed by consultations with both oncologists again.

Objectively, this is encouraging. Both doctors emphasized the low CEAs as a good data point. I am not so sanguine about this, given my historically idiosyncratic CEA levels. They were apparently quite sincere in their positive outlooks.

Subjectively, I continue discouraged, though the idea that if need be we may be able to treat without another round of chemo at this point is a bright spot.

On the emotional front, this is still pretty daunting. I can’t shake the feeling I’m dealing with a relentless foe. I’ve been so busy that I haven’t had time to sit down and really process this one emotionally — the expected meltdown still has not taken place. We shall see. For now, I get two more months to live my life.

Tags: Cancer, health, Personal

Posted: 6:39 am Thu February 23 2012 | Comments(7) |

[cancer] The dragons of doubt

I am off to see both my oncologists this morning. That would be my medical oncologist, who is the primary doctor on my cancer case, and the surgical oncologist who has now operated on my liver twice. This was supposed to be follow-up from last year’s treatment, with both doctors, but now it’s turned into a discussion of the meaning of and go-forward plan for last week’s CT scan showing a new lesion in my liver. L— is taking me so I don’t have to drive in my current nerve-wracked state, plus they can listen to the doctors in case I’m too busy freaking out to pay full attention.

As I said before, there’s several things this lesion could be — steatosis and abnormal liver healing from the prior surgery are the two I’m aware of. Surely that will be a significant topic of discussion at both consults today.

But given my history, the likelihood that this is a new cancer is quite high. And I know what I want done. I want the damned thing out of my body right now, I want to KILL IT WITH FIRE!!! DIE!!! DIE!!! DIE!!!.

Not that I’m upset about this or anything.

I’m virtually certain I won’t get what I want. As one of my various cancer surgeons explained to me at some point in the past, “Surgery is inherently high risk. We don’t like to operate until the risk of not doing surgery is higher than the risk of going ahead with the procedure.”

Given that we cannot yet demonstrate with a high degree of confidence that this new lesion is a tumor, that risk equation isn’t shifted in favor of resection so far as I know. I’ll find out more today. Plus I’m not sure how many times the liver can be resected. If this does have to be taken out, either now or in June, it will be my third liver resection in three years. I’ll also ask about radiofrequency ablation, to see if that’s an option for me. (And my thanks to calendula_witch both for originally explaining that procedure to me, and just lately reminding me of it when my post-chemo brain couldn’t summon the details.)

I wonder so many things. Is this the one that will kill me? (Probably not.) Can I have it out now? (Probably not.) How many times can we repeat this process? (I have no idea.) What happens after we run through the next and last chemotherapy option? (I have no idea.) What’s my prognosis? (The doctors won’t want to say absent more evidence.)

I’m tired of being sick, I’m tired of being afraid, but I’m not tired of living, even living with cancer. Everything is in doubt right now. Those questions rise like dragons from the dark caves of my mind and skim low and menacing over the horizons of hope.

Tags: Cancer, health, Personal

Posted: 6:45 am Wed February 22 2012 | Comments(8) |

[personal|cancer] Stress, cancer and me

I slept over eight hours last night, and still woke up tired. Last week was a very tough week, combining business travel, the slow reveal of my new and ambiguous cancer status, and a Friday evening spent in the ER with a close family member. My schedule has been very off its norms, as have my eating habits. As a result, my weight has shot up again, which happens when I am eating from stress, eating out of the house, eating carelessly, and eating at odd times.

In broad terms, eating is my go-to compulsive behavior in response to stress, rather than drinking or otherwise acting out. This is probably the largest unresolved self-care issue in my life which is within my behavioral control — unlike, say, the cancer, of which I simply have to endure the vagaries.

There’s been plenty of good stuff as well. Personal life is going well, writing life is going well, the_child is doing well. But none of those things grant me more sleep or repair the gaping holes in my schedule or fully balance out the high stress stuff when it hits.

As for the cancer, I haven’t had a meltdown over the new round of information. I think I’ve been too busy to do it. I keep expecting to hit some stumbling block and just lose my shit. Cancer does have that effect on me, especially around the time of diagnosis. On the other hand, being a cancer patient has pretty much evolved into my ground state. The human mind really can routinize almost anything.

In any case, I’m seeing both my medical oncologist and my liver surgeon this Wednesday, and that may be enough to trigger me.

The advantage of a meltdown, of course, is the massive release of the rolling boil of stress and fear and despair that cancer induces in me. If I don’t find a way to let all that out, well, then I wind up doing things like eating too much. The disadvantage of a meltdown is, well, it’s a meltdown. I act like I’ve lost my mind for a while, and I’m embarrassed later. And it’s a tossup whether a meltdown is best performed alone or in trusted company. Not around the_child, however. I am the dad, and while I am not afraid to show weakness, being human and all, losing my shit in front of her is just a bad idea.

So I wander tired, fat and cancer-riddled through my days, waiting for the emotional mugging I can see lurking in the shadows.

Tags: Cancer, Child, family, Food, Personal, Writing

Posted: 7:45 am Sun February 19 2012 | Comments(4) |

[cancer] Watching and waiting

Heard from my oncologist by email yesterday evening. They tell me that the suspected mass is too small to light up a PET scan, so we’re likely going with continued monitoring by CT. This means we’ll recheck, presumably in May three months from now. If it has grown, that’s pretty close to conclusive that it’s a metastatic tumor, but will also indicate that a PET scan is necessary. If it has not grown, that’s pretty close to conclusive that it’s either a scar or a steatosis.

I’ll know all this for certain next week, after I see the doctor on Wednesday.

So, looks like I get a few more months to live my life before the shit maybe hits the fan. I think I’m going to name my liver Damocles.

Tags: Cancer, health, Personal

Posted: 5:08 am Fri February 17 2012 | Comments(2) |

[cancer] The CEA levels are in, ambiguous results

My CEAs came back at 0.7. This low-normal. For comparison, I was up around 8.0 when my previous metastatic tumor was first detected, spiking at about 10.8 prior to chemotherapy and resection — see the chart below.

Had my CEA levels been high on this test, combined with the CT scan result, that would have been fairly conclusive evidence this is a tumor. However, the converse is not necessarily true. This doesn’t mean the current mass in question is not a tumor, as my primary cancer presentation as well as my first metastasis both occurred without any spike in CEA levels. The next step is to check metabolic activity with a PET scan. If the mass is a steatosis, it won’t light up the PET. If it’s scar tissue from the last surgery, it will light up the PET but not as much as a tumor would.

So, an ambiguous but encouraging result. Now waiting to find out when I get a PET scan, or if my oncologist has some other advice.

Tags: Cancer, health, Personal

Posted: 6:16 am Thu February 16 2012 | Comments(5) |

[cancer] So far, not so good

I don’t have my CEA levels yet, but the radiology report from Monday’s cancer checkup is not encouraging. I quote:

Questionable developing subcentimeter lateral right lobe hepatic lesion to which close attention on follow up suggested.

In plain English, that means I have a small mass in the right side of my liver. I’ve been down this road before, and I know exactly where it leads.

Now, this isn’t conclusive. It could be atypical healing from my last liver resectioning. (Longtime readers may recall that I’ve had that surgery twice so far.) It could be something else entirely, like the misread steatosis that led to my first liver resectioning. But given that this cancer has metastasized twice since my primary presentation, one of those times in the liver, I am not especially optimistic. The CEA levels will tell us more — if they are elevated, then there’s a strong likelihood this is another metastasis. I rather assume I’ll be in for a PET scan quite soon to confirm metabolic activity at the site in question.

On the plus side, this likely isn’t the one that will kill me. The site should be readily addressable through surgery, so it’s not inoperable. If I have to do chemotherapy again, this will be my last course, because there are only three options for my kind of cancer, and I’ve already run through two of them. That means if it comes back again in another year, I’m in a much worse position.

And on a serious note to anyone reading who is over 50, or has any lower GI irregularities: get yourself a colonoscopy. It’s inconvenient, and some people find it embarrassing, but trust me, years of cancer surgery and chemotherapy are a hell of a lot more inconvenient. Go do it. Please.

As for me, I feel very, very discouraged.

Tags: Cancer, health, Personal

Posted: 6:15 am Wed February 15 2012 | Comments(9) |

[cancer] Getting another scan today

Off shortly to get my quarterly CT scan and bloodwork. mlerules is driving me because this stuff stresses me out so much.

I need to be scanned every three months because of the high likelihood of the return of the cancer. Let’s just say I’m not a good bet for life insurance. So this is a necessary, even critical part of managing my health. But it’s such a triggery moment, and the rest of my life hinges on each scan.

Sigh.

Tags: Cancer, health, Personal

Posted: 6:20 am Mon February 13 2012 | Comments(2) |