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[cancer] Field notes from Cancerland, gentleman of leisure edition


As discussed yesterday, today is my first day out of work. I’ll be out of work for the rest of my life. This continues to feel very strange to me. I woke up this morning melancholy and feeling off. I have no schedule anymore. (Well, I do today on account of an early therapy appointment, but the principle holds.) I still have the things I need to do — exercise, blog, so forth — and the things I want to do — write, read, hang with Lisa Costello anc [info]the_child and my friends and family. I just need to adapt to the now much more fluid structure.

At a minimum, this means my morning blog posts don’t have to be finished before 6 am Pacific, which is the time of day at which I have started work for lo these many years.


[info]mlerules and Team E— came over yesterday afternoon for another basement cleaning party. We have perhaps one more to come. Vast quantities of archive material were boxed for [info]rarelylynne. The library has been rough-sorted for giveaway, send-to-Powells, keep-for-Child, and Jay-cannot-get-rid-of. We have maybe one more round of serious basement cleaning to do before it’s mostly settled.

Another part of my life boxed and put away forever.

More on Books

As mentioned, the books have been divided into several parts. Like most authors and fans, I have been obsessed with books all my life. At my high point, I probably had 5-6,000 books in the house. There have been three culls since 2000. What’s going on now is the fourth cull. I will hold on to a fairly limited number of books because I want to read or reread them. Everything else is going to various destination. My author copies are being divided as well, between [info]the_child and her mother, Lisa Costello, and the archive. Overage will either be given to interested friends or donated to OSFCI for future convention bag stuffers.

Again, a big part of my life being boxed and put away forever.


I am still driving the Genre car. This would be a 2002 Chrysler Sebring convertible with about 101,000 miles on it. I only drive in the mornings if I can possibly help it, because my increasing fatigue and loopiness as the day goes on increases my risk on the road later in the day. I expect by the fall to never be driving again. The plan has been to let [info]the_child learn to drive on this vehicle (she turns 16 in October), and then simply give it to her as a first car.

So the last few days I’ve been jonesing to sell the Sebring off and buy a gently used first generation BMW Z3. Which [info]the_child would like a whole lot more than she likes my Sebring, plus with the original 1.9 liter motor, they’re actually fairly slow, and with no back seat, she will be a lot less likely to be driving around with a carload of drunken friends or off getting jiggy in the car of a Saturday night.

Excuses, excuses.

This is all a big giant piece of WTFery. My backbrain is looking for positive steps. My frontbrain is saying, uh, no, you don’t have the money and even if you did it’s a stupid idea.

It’s amazing, the stuff my brain and I come up with.

Regorafenib, second series

We are now into the second week of the second three-week series of my good friend Regorafenib. So far, so okay. At this point in the first series, I was pretty damned miserable. We’re doing much better at both anticipating and managing side effects this time around. It’s also possible I’ve already peaked on those, and this is me adapting. Medical opinion is split on whether the peak comes during first series or second series. Go me?

By the way, to deal with the foot pain, which is specific to my soles, we have found a terrific product called Icy Feet. Basically, these are sandal shaped blue ice packs. They’re made for people with plantar fasciitis, and for athletes with foot problems. But they work like gangbusters for the kind of pain that Regorafenib inflicts on me. Check ’em out.

Disability Filing Process

Still going through the disability filing process. What a circus. As mentioned before, I’ll have a lot to say about this in the fullness of time. Last night I learned a weird thing. For SSDI, treatment effects are not considered a qualifying disability.

Think about that for a moment. When I was on FOLFIRI a couple of years ago, I was sleeping 12-13 hours per day, spending 2-3 hours per day on the toilet, could not do simple math, and had trouble focusing to read, among other things. All of those were treatment effects from the drugs. I never felt the cancer at all. Yet according to the Social Security Administration, I would not have been considered disabled at that point.

How in the hell does that make any sense? Another example of the punitive nature of our disability system. American society is so bloody Calvinistic: if you’ve had the misfortune to fall ill, that is a judgment of God that you are unworthy and must be punished. I’d prefer a little old fashioned compassion plus some common sense, thank you very much. We’d all be better off for it.

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[cancer|work] Today is my last day of employment

Today is my last day of employment. Ever.

As of tomorrow, I’m going on Short Term Disability. After the 90-day clock runs out, I’ll transition to Long Term Disability in late September. At some point, I may go on SSDI as well, though that’s not clear to me.

I have a great deal to say about this process, but as the applications and approvals are still ongoing, I’ll hold my remarks until after everything’s settled, or least progressed to a stable point. What I want to observe today is that this is the first time since the summer after high school that I have been voluntarily without work.

I worked my way through college, with an assist from my parents that was substantial as a freshman, declining to minor as a senior. That was their way of fostering my transition to self-supporting adulthood. They were successful.

Since then, I have always worked, though I’ve been laid off five times over the years — one of the perils of a career in high tech — and left jobs for other jobs another handful of times. Except for a long period during the post-bubble tech crash in 2002-2003, I’ve never been unemployed for more than a few weeks. I’ve never not been either looking for a job or working at one.

So this feels very, very weird.

It’s not about being lazy or milking the system, though the disability application process clearly assumes both of those things on the part of me or any other applicant. It’s about being too sick to work, with no expectation of getting better. I can no longer stand and walk easily. I can no longer grip things, or move objects of any heft around. I tend to fall asleep in the middle of the day. I am experiencing meaningful and measurable cognitive decline. I am weak, tired and always in at least mild pain. I spend hours each day on the toilet. None of this will ever get any better. All of it will get worse over time. Any of it is likely to get worse at any moment. Not to mention the new symptoms and side effects that will continue to emerge.

I am not my job. My job is not me. But in the mainstream of American culture, we identify strongly with our work. “What do you do?” is one of the most common questions to ask a stranger.

Me, what do I do now? I’m a professional cancer patient. I’ve been one for years, but now I’ve gone full time. It’s a rather close-ended career, sadly, and even more sadly, it’s the one I’ve got.

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[cancer|writing] Another frantic day

Yesterday I again lost my writing window. The morning was pretty good, including a media interview, but then I lost control of the day. I had meals with friends scheduled, which happened just fine. But some unexpected Day Jobbe responsibilities popped up. One of the disability applications I have outstanding generated an urgent (and unscheduled) return phone call which required response, which in turn soaked up more than an hour. Some of the workplace transition issues which I had asked to deal with next week emerged urgently and unexpectedly yesterday afternoon, consuming quite a bit more of my time. And of course, I had [info]the_child‘s basketball games last night. None of that stuff could wait for another day, none of it could be done by someone else.

So, no writing, but tons of busy-ness culminating in fatigue. And more trazodol last night, which I took too late in the evening on account of being out at the games. So again this morning I woke up groggy and disoriented.

I swear to God, I want to write some more. It’s just been impossible to manage lately. And even if I recover some of my time today (which seems doubtful given the schedule in the offing), I am a week+ behind on responding to email, for the same reason I’m so far behind on writing.

Ah, me.

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[cancer] Field notes from Cancerland, peeling fingers edition

Hand-Foot Syndrome

I’m off the Regorafenib this week as part of the monthly dosage cycle. This seems to mean that my feet hurt a little bit less, and there’s also less pain in my hands. Even so, my lovely case of hand-foot syndrome progresses. There’s some cracking in the skin around my heels. My fingers are peeling like crazy. (Though oddly, so far my thumbs are not.) I am not seeing rawness yet on the fingers, and the peeling barely even itches. It’s just kind of weird.


Regorafenib continues to play merry hob with my sleep cycle. I tire and fall asleep too early, and sometimes also pass out in the afternoon. Yet I’m awake between 2 and 3 am every day. Sometimes I can get back to sleep, mostly I can’t. I’m netting five hours and perhaps a bit more of sleep most nights, occasionally six or so. Weirdly, even Lorazepam does not seem to help this very much. As it happens, I’m surviving okay on this level of sleep, but it leaves me without mental or physical reserves, at a time when the treatments and the stress of terminal cancer eat at my heart, mind and body.


I have been very, very busy this week. Day Jobbery is wrapping up with various project handoffs, knowledge transfer efforts and so forth preparatory to me going on disability as of 7/2/2013. In order to do this, I have four separate disability claims that need to be filed and followed up on: FMLA, Short Term Disability, Long Term Disability, and SSDI. This in addition to a considerable amount of detail effort to manage my severance from the workplace. Not to mention all the followups and action items from multiple recent meetings with attorneys (plural), the financial planner and the accountant. And everything else that goes on around here normally, including writing business, dealing with health insurance, medical appointments and so forth. So, yeah, busy.


Speaking of writing, I am at least moderately back on the horse. I worked last night on finalizing METAtropolis: Green Space, specifically my own story and that of the mighty [info]kenscholes. I have to bat clean-up on a number of minor items today. With any luck, tomorrow I can return to my work effort on drafting Original Destiny, Manifest Sin. I am slowing down (see below), and I’ve for the most part stop accepting invitations to contribute to markets. Just getting through what I have in front of me is close to impossible. The new, it is receding. Even so, I am still writing.


I continue to notice mild cognitive impairments. A combination of memory lapses and being hard-of-thinking. Not sure if this is a Regorafenib effect, a stress symptom, or just my general state of being after all the chemotherapy of the past few years. Most likely all of the above. One place where this manifests starkly is that my ability to either explicitly multitask or to juggle multiple tracks of effort in a tightly-coupled process has all but evaporated. I’ve turned into a one-thing-at-a-time guy. Something that hasn’t been true of me ever, right back to the very beginning of my life. I feel the loss of some of my capability.

Palliative Care

Today, Lisa Costello, Dad and I are going to see a palliative care specialist to talk about end-of-life planning some more. I expect this appointment to cover everything from pain management in my terminal decline, to hospice care decision making, to advice on administrative and financial issues. Like so many of my meetings of late, it will be sobering and overwhelming. This is a difficult path I walk now. Appointments of this nature are trail-blazers that lead me to where the shadows deepen and the light leaches away until I am left with nothing but blood, bone and fear.

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[cancer] Field notes from Cancerland, post Father’s Day edition

In General

All the excitement of JayCon XIII is behind me, along with JayFest and the various auxiliary festivities. This means that I am back to focusing on the difficult details of my life. Including still not having my laptop, and thus missing access to many of my files. I believe the new one arrives tomorrow. It also means the mental and emotional landscape has shifted from a multitude of entertaining distractions to being back at the center of Cancerland. Melancholy prevails.


This week I see a trust attorney for some more estate management discussions, and a palliative care doctor to talk about end-of-life planning in detail. I’m also sitting for a print interview, as well as film shoot not connected to Waterloo Productions‘ ongoing Lakeside project. More about these as they unfold.

Life Transitions of the Financial Sort

The house refinance finalized and funded last week. I hadn’t really written about that here while it was ongoing, simply so as not to create problems in the process should the lender Google me for diligence. I’ll say more about this later in a detailed post on end-of-life finances, but the general idea was to reduce the interest rate in order to minimize cash flow going forward.

Likewise, I have begun the process of separation at work, and my last day on regular payroll is currently set to be 7/1. I’ll go on Short Term Disability for a while, then transition to Long Term Disability later in the year. I have a lot to say about this process, but would prefer to see it all play out before I comment publicly. What is clear is that I will go through a period this summer of essentially zero income, which will be scary and tight.

Emotional Ripples

Lisa Costello had a near meltdown a few days ago in which she told me how difficult it was to watch me dismantle my life piece by piece. Which is exactly I am doing. Leaving work, simplifying and shutting down financial accounts, giving away or getting rid of much of the contents of my house, saying good-bye to geographically distant friends as I get the chance to see them, and so forth. I pointed out that dismantling my life on my own terms was itself something of a gift, as it grants the illusion of control and allowed me to arrange things as I see best. Those brave words aside, she’s absolutely right. This process is heart-breaking. My only comfort is that it’s even more heart-breaking when your survivors have to do it all unexpectedly.

Regorafenib Side Effects

Side effects bingo continues. As of today I am in my off week for the drug (21 days on, 7 days off), so the side effects have hopefully peaked for now. Some of the advice we’ve given is that month one is the period of maximal side effects, some advice says month two. In either case, we expect a plateau after the peak, with the possibility of some mild amelioration. In the mean time, yech. My mouth continues swollen and sore. After most meals I brush my teeth with pharmaceutical grade toothpaste, then rinse and gargle with a saltwater solution followed by a baking soda solution. (I tried combining those two at first. Pro tip: Don’t. Just don’t. Trust me on this one thing.) After that I rinse with the lidocaine mouthwash. Let me tell you, go through that a few times and you never want to eat again.

The other overwhelming side effect is the hand-foot syndrome. As of yesterday I was finally seeing some skin breakage, just peeling on my fingers mostly. But the pain in my palms and soles has been quite troublesome. I walk with a cane now, use a disabled parking permit, and spend as little time as possible on my feet. I also wear cotton gloves most of the time, to avoid incidental friction on my hands. Yesterday my feet hurt so badly I thought the skin of my heels had torn free (which is a possible thing on this medication). In related news, the swelling in my scrotum continues, though we’ve managed to mitigate it by having me wear briefs which are slightly too small for me. This gathers and cradles the affected area, which keeps the skin of my thighs from irritating the swelling. Crazy stuff.

I’m also continuing to experience erratic GI function. Admittedly, that’s my ground state these days, but the Regorafenib creates mild constipation on top of everything else. This is pretty much the opposite of what it says on the tin. And my sleep patterns are just weird at the moment. Unless I have a strong amount of social distraction, I will all but pass out by 9 pm. I will then wake up between 2 and 3 am, and usually cannot go back to sleep. Even my friend Lorazepam doesn’t seem to fix this problem. Just lately, I’ve been falling asleep in the afternoons, and fairly deeply at that. What I’m not yet doing is hitting that pathological fatigue that has characterized so much of the rest of my chemotherapy experience over the years.

I see my oncologist next Monday, along with more bloodwork to track my liver functions and overall body chemistry. We’ll have to find out what the second month of Regorafenib brings. I suspect this will depend a lot on how much the side effects diminish this week in the absence of continued further drug dosage.

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[cancer] Field notes from Cancerland, JayFest edition


JayFest is tonight at Powell’s Cedar Hills. Some of the folks arriving today are staying over for JayCon, including J.A. Pitts and [info]fjm. From about lunchtime today until after dinner Sunday it’s going to be one nonstop trip to crazytown around here. Next week will be a dead calm sea by comparison.

Story Sale

In the department of good news what cheers me, [info]seanan_mcguire and I have placed our collaborative novella “Hook Agonistes” with Subterranean Online. Go, us!

Estate Matters

As of yesterday, the house refinance has funded. I’m done with that, at an advantageous interest rate and a reduced cash flow requirement. This week, we have met with the accountant, the financial planner and the attorney about various matters as well. Sometime in the next week or so, I will write out in detail the kinds of planning we’re doing, including whys and wherefores. Just don’t have time right now. And, frankly, it’s overwhelming.

Daye Jobbe

I am in the process of leaving work permanently on disability. I have a lot to say about this, but I believe I shall wait until we’re all the way through the process so I can comment from that perspective. My employer continues to be extraordinarily supportive of me in this process, as does my boss, as well as the members of my work group. This does have some fairly staggering implications in terms of me receiving reduced cash flow from disability insurance while seeing my healthcare costs push up by 350% in shifting to COBRA. Again, more on this later when all the ducks have been enrowed.

Regorafenib Side Effects

My not-so-slow side into debilitation continues apace. I am now wearing cotton gloves almost all the time, including in my sleep. Also thick hiking socks over my silky bamboo socks, to cushion my feet. We have bought a new chair that gives me good elevation of the extremities, as well as a ‘zero gee’ posture to deal with the significant back pain which is emerging as a result of me walking with an odd gait due to the foot pain. I am also experiencing swelling in various body parts, including my feet and my scrotum. (That last is no joy, let me assure you.) The day to day stuff is driving me nuts. Yesterday I almost had a meltdown because I could not uncap a pen. Also, I am getting stupider. I can tell this because my performance at Sudoku has declined noticeably in the past two weeks. I use that as one of my basic cognitive self-checks. I’ve also been making an increasing number of stupid logistical mistakes. And my sleep cycle is very messed up. I woke at 2:15 am this morning, finally giving up at 3:00 am — this on top of a 10:00 pm bedtime. So, yeah…


Meanwhile, there’s JayCon XIII on Saturday. I’ll be doing my best to enjoy the heck out of all the fuss and bother. Hope you can make one or more of the events between now and then.

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[photos] More faces of Omaha



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[personal] Happy my birthday to you

Today is my thirteenth 37th birthday. I am turning 49.

Hilariously, yesterday afternoon, when it was already today (yesterday’s tomorrow) in New Zealand and Australia, friends over there began posting birthday wishes to my Facebook and Twitter. Folks here in the United States saw that and thought yesterday was my birthday. I find all this terribly cute, and a decidedly modern problem.

We’re having a team lunch at work today, and tonight here in Omaha is my birthday dinner.

There’s a lot of freight on this one. I happen to be here in Omaha on what is almost certainly my last trip ever to a city I have visited literally about one hundred different times. Chances are high I won’t live to see my fiftieth birthday, and if somehow I do, I expect to be quite ill at that point. So, well, here we are. Time to have a party while we still can.

Thank you everyone for coming along for the ride. If you can make it to JayFest, JayCon or JayWake, please do. I appreciate your good wishes and your encouragement.

And hey, it’s my birthday. Go do something nice for yourself today.

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[personal] The week goes on

Not a lot of big doings to report. Plenty going on in my writing life, but it’s either administrivia or stuff-not-ready-to-be-announced. Day Jobbery has been busy. This is convenient, as I am in the Omaha office this week. Been seeing a lot of old friends while I’m here. It’s fun to introduce Lisa Costello to this part of my life, and the people in it.

I’ve been working in Omaha (in a remote sense) since 1999. Over the past fourteen years, I’ve made literally a hundred trips to this city. Kind of weird when I think about it. This has been my home away from home.

Working a lot on paving the way for the life changes in progress. Those are financial, medical, emotional, business and personal changes. And, of course, ultimately mortal changes. These days I’m so caught up in the details that sometime it’s a surprise to remember what I’m really doing.

My actual 49th birthday is tomorrow. We’re having a dinner for me here in Omaha. We fly home Friday, where I have some medical stuff in the afternoon, then my family birthday dinner Friday night. Saturday is the birthday party for [info]mlerules, for which I am planning to make my heart attack potato salad [ jlake.com | LiveJournal ]. That of course presumes my problems with my hands and feet will allow me to cook, which may be a major issue.

Next week I see the oncologist, the attorney, the accountant and the financial planner. Plus JayFest and JayCon XIII. And my very dear friend [info]fjm comes from England to visit me. And, and, and…

So the week goes on.

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[photos] Faces of Omaha

Some faces of Omaha…

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