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[personal] Slight change in email management policy

Lisa Costello and I were discussing my email management issues. I’m a lot slower of thinking than I used to be, and things take longer. There are days where I receive more email than I can possibly respond to, which causes me to get behind. Then more behind. And so forth.

I used to be very diligent about responding to email, with the exception of complex or difficult communications where I needed time to think. At this point, I’m simply announcing what has already become de facto reality. I no longer respond to most email on the same day I receive it. I will also begin to triage my email more aggressively, which means far fewer courtesy responses, thank yous, and follow up notes than is my wont.

This is not me being ill socialized or rude. This is me acknowledging my time and cognitive constraints.

Please, feel free to write me if we have business, or are friends, or you are just so moved. But please do not be offended if you do not hear back from me promptly, or even slowly.

This is not how I would have it be, but this is how I must handle things.

[personal] A slow day and a dinner out

Yesterday we were supposed to do another round of basement cleaning with Team E—, but I was just too tired to deal with it. So we laid low instead. Dinner was still on, though, at Deschutes Brew Pub in NW Portland.

A funny thing happened on the way to dinner. Team E— got delayed and couldn’t make it. But @MiriamAnneW (of Tor, my publisher) messaged that she was in town, and were we free for dinner. So we kept our plan and swapped out our dinner companions. Miriam brought @suddenlyjen (of Donald Maass Literary Agency, my agency), who was delightfully interesting to talk to. And while walking to the restaurant from the car, @radiantlisa and I ran into @PDXjerseygirl (a/k/a Jersey Girl in Portland), so she joined us as well.

A good time was had by all, except for me becoming fairly ill during dinner and not eating much of anything. Still, I lasted almost ninety minutes. Mostly it was funny because of how much the dinner morphed from when we planned it to when we sat down to eat.

You never know…

[personal] A school visit

Last Thursday I did a school visit. Since it was a middle school, I’m not comfortable naming exact details for the sake of privacy, but suffice to say that I sat with an eighth grade class, then a seventh grade class, to talk about writing, cancer, death and other things.

The particular spark for this visit was my recent blog post on kindness and opportunity [ jlake.com | LiveJournal ]. The teacher had assigned that as reading to both classes, then had them write essays about kindness.

I got to hear some of the essays, as well as some related fiction from a writing assignment. I was also told some pretty interesting and serious things by several of the kids. But mostly I got to talk with them.

These days I’m on disability because I can neither work nor write effectively anymore. As a friend said to me last week, we all need meaningful pursuits. While bearing witness to cancer and its challenges is certainly a meaningful pursuit for me these days, that’s a small amount of time spent at a keyboard a few times per week. To be out in the world, talking to people of any age, about the things I think are important: that is a great gift.

I want to thank the classes and their teacher, and Ellen Eades for driving me to and fro so I could have the energy to focus on the kids.

[personal] Ask me anything

Yesterday was kind of busy, what with the broken bed (not for fun reasons, sadly), the entertaining but lengthy visit to the lumberyard, the minor crisis over life insurance, the school visit, and actually socializing with our visiting friend Ellen Eades. That meant I never had time to write a solid blog post for today. Likewise this morning, with early lab work at the clinic and a bunch of errands.

I will, however, have time this afternoon. So this is an ‘Ask Me Anything’ thread. Post your questions in comments, and I’ll reply. If the question (or the reply) is particularly interesting, I’ll probably promote them to a blog post later on. Writing, publishing, cancer, death, parenting, politics, etc. — give it a shot. The only thing I won’t respond to is blatant trolling.

I look forward to hearing what you have to say.

[personal|food] Restaurant disservice, Outback Steakhouse style

I’m not a fiend for perfect restaurant service. I know wait people get tired, kitchens get busy, and everybody messes up once in a while. Generally, I have a lot of patience and a high tolerance level for eccentricities of table service.

But last night, Lisa Costello and I had one of the worst restaurant experiences I’ve had in quite a while at Outback Steakhouse over here in SE Portland. Comparable to my very bad experience at Papa Haydn about this time last year [ jlake.com | LiveJournal ]. Much as with Papa Haydn, the evening was sufficiently irritating that I won’t voluntarily go back to the restaurant ever again.

On entering the restaurant, we were seated immediately in an otherwise empty section. There were very few diners in the place, as we had arrived relatively early in the dinner hour. A little more than five minutes later, we had to ask the host to send a waitperson to our table, as there had been no attention at all. The section was simply dead. He rolled his eyes, which I did not appreciate, then headed off to the kitchen. A waitress shortly appeared.

We placed our order, which was simple with no special requirements. It came out very slowly, and piecemeal. Two appetizers arrived about ten minutes apart. The steak arrived about forty-five minutes after we ordered, just after I’d politely complained to the host, who again was indifferent. Others around us entered the restaurant, were seated, ordered, served and finished their meals in the time it took our entree to come to table. The waitress never acknowledged this and made no attempt to explain the slowness, make up for it, or secure us our food. (She did eventually take one of our appetizers off the bill.)

What the heck do you do as a diner in that situation? I respect that food service is a tough job on its best day. The waitress was not being personally rude to us. I’m a little too well socialized to raise hell, though I did speak to the host twice, for all the good it did me.

Restaurant politics are funny. The whole low-wage/tip thing is weird. (There’s some history about it here, in an otherwise fascinating article about a tipless restaurant.) And I know chances are good the problem had little or nothing to do with our waitress. But her job is to be the restaurant’s face to its diners, and her job includes making sure people know what’s going on. Even a plausible lie about some embarrassing kitchen screw up would have been better than the dead silence and excruciatingly slow service we received.

I think that’s what frustrates me the most. That lack of communication, that lack of service in the larger sense of the term. The indifference.

At any rate, this is the first time I’ve set foot in an Outback Steakhouse in years. It’s also certainly the last. My life is too short, literally and figuratively, to put up with this crap. Especially when I am lucky enough to live in a place like Portland with hundreds of wonderful restaurants to choose from.

[cancer|personal] Last night I shit my bed

Yup. What it says on the post title.

The details aren’t important. Suffice to say that at this point in my Regorafenib cycle, my lower GI is in a state of profound disruption. I awoke from sleep moments too late for an urgent demand from my colon. Everything was eventually cleaned and dealt with, but I felt disgusting and filthy, and experienced a very depressing loss of my sense of agency and self control.

This is what cancer does to you. This is what years of chemotherapy does to you. This is what powerful drugs do to you. They strip away your basic control of your body, and reduce you to an infantile helplessness.

I sometimes complain about feeling broken, about feeling compromised and foolish and unlovable. I’m here to tell you, scrubbing shit out of the sheets at 2:30 am is about as unlovable and unsexy thing as a human being can do.

So, yeah. There’s a lot of love, laughter and fun in my life just lately. But there’s a lot of fear, distress, pain and just plain nastiness as well.

[cancer|personal] Another change of status

As of today, I am no longer employed. Instead I am now on Long Term Disability.

For the past ninety days since I stopped working, I’ve still been employed, but on Short Term Disability leave. Today is my transition date. Much as I never expect to write again, I never expect to go back to work again. Not with my terminal diagnosis and the difficulties of my treatments.

I had my first job at 15. I was working full time by the second half of my college years. Except for periods of involuntary unemployment, I’ve never not worked.

Now I am being given the luxury of dying in peace rather than dying in harness.

Sometimes I think about what it would mean to work now. There are days when I’m quite functional, after all. Then there are days when I am not. To fill a job today, I’d need an employer that could tolerate me being unable to commute to work, being unable to stand at work, being unable to walk more than short distances at work, being incredibly clumsy and malcoordinated, spending up to three hours per day or more on bathroom breaks, falling asleep at random intervals, having significant short term memory problems, not being able to count or make change accurately, being unable to remember the names of co-workers and customers, lacking deep analytical or critical thinking skills, and taking an enormous number of half days off for medical visits.

Since I’m not interested in being a congressman, there’s not a lot of other jobs that will tolerate this sort of behavior. Plus exhaustion. And emotional meltdowns. And and and…

So I no longer work. Another thing which has defined my adult life, lost to cancer.

At least I still get to do interesting and rewarding things with my time, given the limits of my capacity.

[personal] A fun weekend

Yesterday afternoon, Lisa Costello and I went out to McMenamin’s Edgefield. Located at the old Multnomah county poor farm, the place is basically an 80-acre art project, featuring architectural preservation, glass blowing, ceramics, sculpture, wild gardens, vineyards, a winery, a distillery, a hotel, a spa, about a dozen bars and almost as many restaurants ranging from casual snacks to fine dining. It was amazing. We will be going back, probably a lot.

A friend is coming to town this afternoon for a few day’s visit. We all have a fajita party tomorrow afternoon on the porch of AH and [info]tillyjane (a/k/a my mom). And it’s a cool, rainy Oregon autumn.

I’m down with all this.

What are you doing this weekend?

[cancer|personal] The panics go on

So there was the recent issue with blood in my stool. Which seems to be innocuous enough, but still scared me into flashbacks.

Also, I’ve lost about six pounds since returning from New Zealand. I’m a big guy, and six pounds isn’t much, but it’s a mildly puzzling trend. In the past week, my appetite has also dropped close to nil. (This postdates the beginning of the slide in my weight, so the obvious causal connection does not apply.) The combination of these two things corresponds to the description of what I could expect at the beginning of my terminal decline. Both Lisa Costello and I have very much been fearing that the Regorafenib was failing. The fact that my body continues to adapt to this drug only reinforces that fear — for some chemo drugs, the intensity of side effects reflects the efficacy of the drug’s action. High side effects, strong drug action. Low side effects, weak drug action.

Yeah, well.

Given that we have a scan next week, we’re also wrestling with scanxiety. Lezli Robyn visiting is a fun distraction, but there’s a big coil of mortal fear and dread of death swirling close to the surface. Which makes everything else hard to cope with. Especially fears such as the ones about the change in my metabolism and the possible loss of the drug effectiveness. Prior to the last scan in July, Lisa and I were pretty much at each other’s throats with fear and stress, which is so not how our relationship works.

Then yesterday I realized that my appetite loss coincided with a recent increase in my Trazadone dose. A little quick Googling showed that there is a link between Trazadone use and appetite suppression. Which, while annoying, is orders of magnitude less scary than assuming I was hitting the skids with the cancer.

When the current drug fails, as it inevitably will, I’m back to having six to nine months to live. The countdown is on hold right now through the good offices of Regorafenib. But panics like the one we both had this week are emblematic of how tenuous my grip on health and life itself is. And next week’s scan, like all scans, is an opportunity for me to play Russian Roulette with my cancer.

Sometimes the fear consumes us all.