Jay Lake: Writer

[cancer] The saucer brought me home, colonoscopy all good

Colonoscopy this morning. The (important) good news, as calendula_witch explains here is that I’m all normal. No polyps, no nothing. I don’t need another one for three years. The (transient) bad news is that I am as fatigued now post-procedurally as I was during some of the worst of chemo. My recovery climbout from sedation or anaesthesia is always much longer than the norm. calendula_witch is here at Nuevo Rancho Lake keeping an eye on me.

Tags: Calendula, Cancer, health

Posted: 5:23 pm Fri August 20 2010 | Comments(9) |

[cancer] Time for another alien abduction experience

I am having another colonoscopy tomorrow. That means I’m on a clear fluid diet today, and this afternoon will be taking WonderDrugs™ to ensure the pipes are clean. I’ve warned everyone local to stay the heck away from Nuevo Rancho Lake today. There truly are some experiences that should not be shared.

A lot people are very uncomfortable with the idea of a colonoscopy. It’s invasive, in a manner and location which can feel very transgressive. It’s a little spooky, especially if you happen to get a look at the probe beforehand. Imagine a Norelco razor duct-taped to a black garden hose… Then imagine that going where the sun don’t shine. We’re talking Fantastic Voyage, except with John Candy in the Raquel Welch role.

I like to think of colonoscopies as alien abduction experiences. I’m taken into a little room with bright lights by mysterious figures in face masks and splash guards, I’m forced to strip and lie on a cold table, I get to enjoy an anal probe, and afterward remember almost noting of it. Really, how different is that from the classic contactee narrative? Perhaps the CIA has had field-expedient colonoscopy teams roaming the country in black helicopters all these years, when they’ve been able to take time off from mutilating cattle, staring at goats and overthrowing Third World dictatorships.

But there’s two critical facts about colonoscopies.

One, they don’t hurt at all. (I’m far more wiped out by the sedation.)

Two, they can and will save your life.

So do me a favor. Do yourself a favor. Do everyone who loves you a favor. If you’re eligible for a colonoscopy (in most US healthcare environments, that means being aged 50 or older), go get one. More to the point, if you have experienced any of the warning signs of colon cancer, whatever your age, go get a colonoscopy.

Colon cancer is the third most commonly diagnosed cancer in the United States, with about 6% of the population eventually suffering from it. It’s the second largest killer among cancers, after lung cancer. The procedure is a little embarrassing and rather disruptive, but I’m here to tell you from deep personal experience that living with colon cancer is a hell of a lot more disruptive than half a day on the toilet and some bright lights in a little room.

So enough with the PSA. I’m doing my bit, because we already know my colon loves to produce new polyps, the bad kind. Due to my medical history, that induces a certain amount of fear and trepidation on my part, but the alternatives are worse.

Tags: Cancer, health, Personal

Posted: 5:18 am Thu August 19 2010 | Comments(7) |

[cancer] A pair of semirandom lists

Some things that irritate me about the cancer experience.

• Cold, cold hands and numb feet from peripheral neuropathy
• Irregular sleep
• Irregular lower GI
• Emotional jags
• Screwing up my writing schedule
• Casting a pall on the future

Some things the cancer experience has granted me.

• A keen awareness of how much I am loved
• An opportunity to come to terms with my mortality
• Renewed sense of priority
• Heightened awareness of my somatic self
• Perspective — so much fucking perspective I could mine it and sell it by the long ton

What have the great trials of your life taught you?

Tags: Cancer, health, Personal

Posted: 5:18 am Tue August 17 2010 | Comments(3) |

[personal|cancer] Trying to keep up

“Trying to keep up” seems to have been my recent theme. Keeping up with the logistics and details of our forthcoming trip to the antipodes. Keeping up on yesterday’s Kelly Point hike. Keeping up with my sleep. Keeping up with the final read-through of Endurance.

Sleep is all over the map. Along with peripheral neuropathy, fatigue is one of the only chemo side effects still dominating my life, here two months after finishing the FOLFOX/Avastin regimen. (Other side effects still appear in blivets, around digestion, sexual function, etc., but they are not constant.) Apparently, if I have a low-key day, I can sleep six and a half to seven hours and be fine, nearly my old pre-chemo pattern. In those situations, my internal alarm clock has returned. That is to say, my pre-chemo time awareness that allowed me to select a wake-up time and then simply wake up without the aid an alarm. If I have a physically or emotionally stressful day, I can sleep as much as nine hours. In either case, waking is a longer, slower process than the ‘spring out of bed and go! go! go!’ rubric under which I used to function.

Which continues frustrating, to say the least. Much as I no longer take the stairs two at a time going up, I am still missing something that feels like it was an important part of me.

One of the lessons I am currently taking from this third occurrence of cancer, rightly or wrongly, is that I may never get back to that six hours per night, two-stairs-at-a-time life I had. I think I’m preparing myself for cancer to be a chronic condition. That is not to say I’m ceding so much as an inch in the medical fight, but I’ve been making myself crazy trying to be the person I think I should be instead of the person I am.

I do not want to let cancer to redefine me, but in blunt terms, it has. This is the struggle I recently referred to about not accepting limits but learning to live within my limitations.

My surgical oncologist may be right. We may be managing this for years. My medical oncologist is still aiming for a full cure. She may be right. I don’t know. What I do know is this thing keeps Not Going Away, in an increasingly spectacular and invasive fashion. Medical science prunes my body one organ system at a time, then cancer calls around and takes a shot at another one.

So I pursue surgery, second opinions, treatment options, improved understanding. I reorder my writing schedule and life priorities. I wonder if this month right now prior to the next surgery is the best health I’ll ever see for the rest of my life. And what do I do but go on, trying to keep up?

Because giving up is never an option. But keeping up gets damned hard some times.

Tags: Books, Cancer, Endurance, health, Personal, Travel, Writing

Posted: 5:30 am Mon August 16 2010 | Comments(3) |

[cancer|travel] Some good news, for a change

My surgeon called today. The CT scan showed the lesion having not grown much, so he’s cleared me for the New Zealand/Australia trip with . Surgery will be September 16th, after we have returned.

Tags: Australia, Calendula, Cancer, health, New Zealand, Travel

Posted: 4:08 pm Fri August 13 2010 | Comments(13) |

[cancer] Dipping from the wells of disappointment

Some more semirandom observations about cancer and its discontents.

…

This morning in Link Salad I included a link to a Roger Ebert essay about Christopher Hitchens and cancer. Ebert says a number of interesting things about dying, religion and self. As I highlighted this morning, he comments that being sick is worse than dying, at least in some ways. That was the point of my jeremiad yesterday about my cancer fears.

I also rather like the comments on prayer. As anyone who pays attention to me for more than a few moments probably knows, I am a staunch atheist. This has been a frequent topic of discussion on the blog in the past, my view of religion as such falling somewhere between the Pink Unicorn fallacy and Last Thursdayism. On the other hand, my view of human nature and the human spirit requires that I acknowledge both logos and mythos. That duality for many people is best expressed through faith.

I have one acquaintance who’s a committed Evangelical Christian, and has been pressing me hard to “get right with God.” It strikes me as moral cowardice of the worst sort for to me surrender my intellectual principles now in the face of fear of death. If I’m willing to live with my beliefs (or lack thereof, in the religious sense), I should certainly be willing to die with them. Otherwise I’m guilty of the same hypocrisy I so constantly rail against.

That being said, for all my quarrels with the formal worldly incarnations of mythos, I do have an immense respect for it, and for the value of spiritual truth. When someone says they are praying for me, I hear love and respect and caring, because I understand the importance of that prayer for them. Likewise, when people light a candle or send me energy, or whatever their spiritual practice suggests to them. That is a focus of goodwill on me that I would not dare deny for simple civility if nothing else, and far more than that, something I welcome and appreciate and for which I am profoundly grateful.

…

Coming at this from another angle, I find the response of my doctors to the latest round of cancer to be a bit unsettling. My medical oncologist was visibly upset about the new metastasis, which is decidedly not her usual modus operandi. The surgical oncologist also found this new round quite surprising. This continues to suggest to me what I’ve thought for a while, that the progress of my disease is pretty far out on the edges of what is expected for this type of cancer, and pushing the boundaries what the treatment protocols indicate.

I was discussing this with my therapist yesterday. He asked if at some point I would need to leave my current hospital and seek treatment elsewhere, at a dedicated cancer center. Since my cancer is arguably aggressive and almost certainly chemo-resistant (at least to the FOLFOX cocktail), this is not a bad question. I have a great deal of confidence in my current oncology team and in the treatments to date, but obviously the progress of my disease is ahead of the effectiveness of those treatments.

So, I don’t know. Some research on my part (or possibly on my behalf) is required. I cannot see any reason not to proceed with the current plan, but if it comes back again, especially with a repeat of the swift intensity of this most recent metastasis, I am going to have to rethink. One thing I will be asking for is a 3-month CT scan during the chemo cycle. Had we done this on the last go-round, we would have discovered far sooner the ineffectiveness of the chemo regime I spent the first six months of this year enduring for what turns out to be no good at all.

In the mean while, we await the results of Wednesday’s CT scan to determine whether calendula_witch and I get to go traveling, or just dive back into the medical system that much sooner. Not that I’ve really left it…

I say to you again that I do not recommend cancer as a hobby.

Tags: Calendula, Cancer, health, healthcare, Personal, Religion, Travel

Posted: 5:29 am Fri August 13 2010 | Comments(4) |

[cancer] Melting down like an ice cream cone on an August sidewalk

Yesterday, most of what I expected was confirmed. calendula_witch commented as well. In short, I am almost certainly entering my third round of cancer in the past three years, with a second metastasis, this time in my liver.

Apparently, I’m collecting organ systems one by one. Eventually I’ll have the whole set, and can make a man of myself.

So late yesterday afternoon I went into a nasty, slow-motion meltdown and (figuratively) threw up all over calendula_witch. I had sad, ugly thoughts, and spoke some sad, ugly words. Revolving around the obvious of course. We worked our way through it, and made things right between ourselves, but damn it was hard and stupid and she doesn’t deserve any of it. Neither do I.

I continue to struggle with, among other things, my sense that this is getting worse. The primary cancer in my colon likely took years to develop, they tell me. The lung metastasis last year was 5 mm in April and 10 mm in October, growing about 5 mm in diameter in six months. Call that a growth rate of 1 mm per month (assuming a linear progression for the sake of discussion). The liver metastasis this year was non-existent in November and 29 mm in July. That’s a growth rate of about 4 mm per month. While on chemo.

In other words, every time this little bastard assassin child of mine comes back, it stronger, faster and nastier. And yes, three data points doth a trend describe. This is why we had the CT yesterday, to see how fast this thing is growing now. There are three possibilities, it seems to me. One, the tumor has stabilized. Two, tumor has maintained the linear progression and will measure about 33-34 mm. (Which, incidentally, falls within the 5 mm margin-of-error of the CT scanning process, with respect to the current 29 mm measurement.) Or, post-chemo, it has really busted a cap on my liver and is somewhat larger than 34 mm.

Over the past three years, whenever I think I’ve found the worst-case fear, the reality has trumped my thinking with something even more dreadful.

So I have trepidation about this CT scan. Mind you, it does not matter, we’re doing surgery anyway. All this scan will do is establish our risk criteria, and govern whether we rush the surgery (and cancel the New Zealand/Australia trip) or let it happen in mid-September, per the current plan.

Now, take the above-described trending and map it forward. What happens next year? A big piece of yesterday’s meltdown was me pouring out my fears about losing my writing career, my Day Jobbe, my ability to care for myself and the_child financially, as I get increasingly sick every year.

I am sane, I am rational, I am emotionally healthy. I am not going to let my fears stop me. But the stark simple fact is that the things I fear from this seemingly endless progression of cancer do have the power to stop me, regardless of my resolve. And I am afraid of that.

Tags: Calendula, Cancer, Child, health, Personal, work, Writing

Posted: 5:58 am Thu August 12 2010 | Comments(7) |

[cancer] Having met with the liver surgeon…

calendula_witch and I met with the surgical oncologist today regarding the lesion in my liver. He had a very strong and reassuring chairside manner.

The surgeon expressed his sympathy for what I’m going through. He is quite clear on believing this lesion to be metastatic colon cancer of the liver, despite the ambiguous PET result. There are several other possibilities, but he finds them all low probability. The proof of course will be in the post-operative pathology report.

We talked about the possibility of a biopsy, but in this case he’s strongly in favor of going straight to a resectioning. I agree with this completely. Whatever this thing is, I want it out of me. The plan is to take about 45% of my liver out — the left half, more or less — via laparoscopic surgery which will leave entry wounds in various decorative places about my abdomen, including in the existing scar from my colonic resectioning of 2008. I can expect the liver to regenerate to about 95% of its original size within four weeks of the operation. The surgeon says I will feel lousy and tired for about six weeks afterwards, even with the relatively minimal surgical wounds. I pointed out that having just gotten off chemo, I was no stranger to that.

Assuming the pathology report bears out the current opinions, I’ll go back on chemo 4-6 weeks after surgery. This will be another six-month course of twelve biweeky infusions, this time FOLFIRI-Avastin. We did discuss the possibility of chemo prior to surgery, but he felt that was not indicated in my case as the lesion is singular and fairly accessible.

The main variable now is the New Zealand-Australia trip. After some discussion, we all agreed that if the lesion is fairly stable in size and presentation, the surgeon is comfortable postponing the surgery until after the trip. Currently it is scheduled for 9/16. However, he did order a CT scan which was done this afternoon, to check on possible growth of the lesion. If it shows evidence of continued development, we will cancel the trip and the currently scheduled surgery and instead have surgery as soon as OR time can be secured. I hope to know on Thursday or Friday which path we’re taking.

One of his more revealing remarks was his comment that cancer treatment is a process of controlling the disease over the long term. He called it “eminently manageable”, given my apparent tendency to present with one tumor at a time. I remain concerned about the apparent increase in aggressiveness as this journey continues, but we treat what’s in front of us.

I’ll know more by the end of the week, hopefully, with respect to dates and planning. For now, suffice to say it’s falling out about as my medical oncologist said it would, and as I have been expecting.

Tags: Australia, Calendula, Cancer, health, New Zealand, Personal, Travel

Posted: 4:16 pm Wed August 11 2010 | Comments(12) |

[cancer] Life’s only a metaphor anyway

Last night I dreamt my own death. It wasn’t literalized, was in fact highly metaphorical even for dreamspace, but I knew this for what it was. The situation involved top fuel dragsters, some of my co-workers from the Day Jobbe, and the cast from the recent Star Trek reboot, in character. Ultimately there was a botched beheading, and pale white blood.

I have got to get a handle on these emotional reactions to the apparent return of my cancer. (Now! Held over due to popular demand! SRO!) And I will, once we have some direction and a better sense of the treatment plan. But for the moment, the odd thoughts and disturbing dreams and emotional eddies are here.

Liver surgeon in a few hours. Then we’ll know more.

Tags: Cancer, health, Movies, Personal, work

Posted: 5:49 am Wed August 11 2010 | Comments(5) |

[cancer|writing] All-way stop

Tomorrow’s meeting with the liver surgeon has put my brain so deeply in vapor lock that I cannot even work on Endurance revisions today. So here I sit in the Fat Straw with the Fireside Writers Group doing, well, nothing.

Cancer has stolen yet one more thing from me, at least for today. Grr.

Tags: Books, Cancer, Endurance, health, Writing

Posted: 4:00 pm Tue August 10 2010 | Comments(4) |