[cancer|conventions] Schedules, short term and long

Another somewhat sleepless night, thanks to my lower GI issues making a return engagement. Having applied the lessons of last Tuesday’s disaster, I managed to keep both the digestive and sleep harm down to merely annoying as hell, as opposed to nigh-catastrophic. Yes, Virginia, sleeping in the recliner really does help.

I completely lost control of my schedule yesterday. The Day Jobbe, very unusually, needed a meeting covered from 4 to 6 pm Pacific. As everyone in my department but me lives and works in Nebraska, that would have been 6 to 8 pm in their home time. So I agreed to take one for the team. Given that I started work at 6 am Pacific, as usual, this netted out to a twelve-hour work day for me. (In fairness, I took an extended afternoon break, but it ain’t the same.) As a result, though I managed to help with her homework, I got nothing else done outside my office chair yesterday. I had in fact planned to begin work on the Endurance revisions, and return some languishing emails.

This reinforces to me something I already have been wrestling with: that I really don’t control my time any more. The most I can do is set goals, and aspire to meeting them.

In ordinary health, I am awake about eighteen hours a day and active the entire time. The first two hours of that are exercise, personal grooming and blogging. Nine hours of that is Day Jobbery, at least during the work week. That leaves me with seven hours per weekday for time with , relationship maintenance, friend time, writing, reading, cooking, housework, shopping, errands, and all the other things that make up a life. (I don’t watch tv or play video games, so I don’t budget time for that.) All the more so on weekends.

In chemo mode, and this has been more or less true since the surgery in November, I am awake fourteen to sixteen hours a day. The first two hours of that are still exercise, personal grooming and blogging. Nine hours of that is Day Jobbery, at least during the work week. By the time work is over, usually 3 pm, I am running out of steam, and have at most two more productive hours left.

I have gone from seven hours per weekday to accomplish things, including both parenting and writing, to two hours per weekday to accomplish things. And if anything upsets my schedule, such as sleep fail or other side effects issues as with Tuesday, or work overflow as yesterday, or family issues as at the beginning this week, I’m done. I meet none of my goals. Guess how many of my goals I’ve met this week?

This is making me insane.

And there’s nothing I can do about it.

Some of my friends have argued for acceptance. I can’t do that. I simply will not give in to the cancer. I am forced to compromise in obvious ways. I don’t fight to stay awake and do things when my body needs to sleep. But as soon as I start telling myself, “Oh, it’s okay, I can’t do this any more because of the cancer,” I’ve lost something important. Critical.

Because I will take back every inch cancer is taking from me, with interest and vengeance. And if it does eventually drag me into the grave, the undertaker will be picking dirt and blood out from under my fingernails, where I fought it to the last. The fight starts anew every day, because I’m afraid if I give in even that first inch, I’ll set myself on the path to losing the entire field.

More on this later from another angle, when I have brainspace and time. made a wise observation in comments yesterday, which dovetails with discussions I’ve already been having with and about the coping distinctions between chronic and acute conditions, and how I’m viewing my cancer.

Speaking of compromises, my convention and travel schedule this year will be quite different than it has in prior years. Time to update that.

Except for a hoped-for appearance at Rainforest Writers Village this March, I don’t plan to be at any events prior to this summer. I will be writer in residence at A Writers Weekend in July, my first post-chemo event.

My first conventions post-chemo will be Au Contraire (New Zealand’s national SF convention) at the end of August, and AussieCon 4 the weekend following. and I burned a sky-high stack of frequent flyer miles to get ourselves there in celebration of my recovery from cancer.

Due to constrained funds because of healthcare expenses, and having to use all my sick and some of my vacation time at the Day Jobbe for chemo, that’s about it for major conventions for me. Barring unexpected developments I will probably make it to Foolscap, and certainly to OryCon.

Speaking of major conventions, I will almost certainly not be at World Fantasy Convention, for the first time in many years. Even if I were in funds and equipped with plentiful time, I would probably skip it this year for two reasons.

First, the continued difficulties the WFC convention committee has been experiencing providing something as simple as on-line registration — not exactly a startling new technology in the 2010s — gives me no faith whatsoever in their ability to do anything else basic to putting on a successful event.

Second, when I inquired why this was an issue, I was told that the committee had been running conventions in the Midwest for years without online registration, and that only “coastal elites” cared about such things. I have no desire to spend my time and energy at an event where the convention committee has such a derogatory view of me, as well as many of the pros in our field. So, no WFC for me this year. Which is deeply ironic, considering I was Toastmaster at WFC this past year, and have long been an enthusiastic fan of that convention.

So, if you want to catch me on the Con circuit, you’ll have to pop down to Australia or New Zealand, hang out on the West Coast, or extend me a GoH invite and see if I can wrangle the time. Another gift of cancer, this lack of time and funds. Another thing I’ve given up this year. Some fights I cannot win, and the fight to keep up my travel schedule and public presence is absolutely one of them, in the face of my need to heal and recover, and manage my life.

It’s tough, giving up my activities. I don’t think I’ll stop resenting the need for additional sleep, and resenting even more the need for daily periods of inactivity, especially after about 5 pm. Giving up so much of my travel and convention schedule is just another annoyance on the pile.

10 thoughts on “[cancer|conventions] Schedules, short term and long

  1. Meran says:

    I’ve been on the goal setting only plan for about 12 yrs now, and yes, still resenting it, tho I’ve been Forced into the Acceptance Contract.
    I, too, had a very long production day. Now, the days I get one major thing done is a good day (I got tired of the constant frustration)
    maybe you can think of it as temporary adjustment, knowing the end is in sight (go look at that row of bottles,,, mine would be neverending; yours all fit on your mantle). Be happy that you have what you do! Living w frustration only feeds the cancer 😀
    take deep breaths
    and yes, recliner sleeping works… also white noise (have you got an air filter?)

  2. Meran says:

    Honestly, I’m surprised you couldn’t / didn’t take time off to do the entire treatment time period… Working while even between treatments sucks in so many ways.

    1. Jay says:

      I could go on short-term disability at work (up to six months), but I’d lose about 40% of my income doing so during that period.

      Except by draining my retirement funds, I don’t have anything remotely approaching the financial resources for six weeks of unpaid leave, let alone seven or eight months of either unpaid leave or short-term disability.

      I’m the sole wage earner for two adults and a child, and our capital and long term savings were pretty much wiped out in the dot com crash, have never come back effectively because my income levels have never recovered.

      1. Cora says:

        This is yet another way in which your situation illustrates the issues with the US healthcare system. Because in most countries with a decent, organized healthcare system, you would not have to work through a course of chemotherapy. Because there would be a system of a period of employer paid sick leave (at full payment), followed by insurance paid sick money (usually a certain percentage of your wages) in place. In Germany, people are routinely absent from work for sometimes weeks and months at a time for ailments that are much less severe than yours. An employer will probably try to get rid of a constantly ill employee (you can’t fire someone outright for illness, but you can get rid of them in the next downsizing or negotiate premature retirement), but losing your job will not automatically lose you your health insurance.

        And yes, there are those that abuse the system. But I’d rather put up with a few abusers, then see people forced to work through chemotherapy and other debilitating conditions, because they have to. You might still choose to work – and many do, including cancer patients – but you wouldn’t have to, if the side effects became too severe.

        1. Jay says:

          Whereas in America, I am one of the lucky ones. My annual healthcare expenses out of pocket for 2008, 2009 and (estimated) 2010 are about 15-20% of my net income, and that is with good insurance and a generous employer. That I am salaried, given a fair amount of flexibility, and assisted through this process is an unusual benefit in the overall American workforce, though ordinary enough in white collar employment. If I were hourly, I’d be toast.

          Yes, it’s rough. And that’s me being lucky, well-insured, and with a generous, supportive employer.

          You can analyze much of American politics and policy, not just healthcare, by keeping in mind that the guiding principle of virtually all conservatives as well as many others is the dread fear that someone, somewhere, might be enjoying an undeserved benefit at their expense.

          1. Cora says:

            You’d still have to pay some costs out of pocket in Germany, e.g. the daily hospital fee, “Praxisgebühr” (quarterly fee of 10 Euros to be paid once per quarter when someone dares to seek medical attention), probably some kind of medicine surcharge and you’d have to pay for things like better anti-nausea drugs out of pocket. But you’d still not have to pay nearly as much out of pocket as you do now and you’d not have to fear job loss or lifetime maximums.

            The German system has its share of problems, e.g. contraceptives and abortions are never covered by health insurance (but viagra and fertility treatments are), that bloody “Praxisgebühr”, glasses are no longer covered at all and only the most basic of dental work. Plus, we have a few newly in power neo-liberals (probably what you’d call libertarians in the US) chopping away at the healthcare system. But it’s still vastly preferable to the completely mess-up US system.

            And regarding conservatives (and neo-liberals/libertarians), I completely agree.

  3. Kai Jones says:

    I understand and have sympathy for the resentment (I have a chronic disease and I remember the first few years after my diagnosis as ones of frustration and denial about how my life had changed).

    I can’t offer you much other than conversation. If you want to vent, feel free. I know it has helped me over the years to vent to someone other than the people in my immediate life who are already dealing with the burdens.

    1. Jay says:

      Thank you, Kai. Coz, yes, it’s a strange transition. And even so, I may get to go back…

  4. Phiala says:

    I’m baffled by WFC. It’s within driving distance for me, so I was hoping to go. But their web page is nonfunctional (aren’t those buttons supposed to go somewhere)? And even weirder, I wondered about the lack of functionality on my computer, so I clicked on the web designer’s link at the bottom of the page and was taken to what appears to be a Japanese cosmetics site. Huh?

    I know, tangential, but…

    1. Elspeth Kovar says:

      The WFC is tangential but I’ll pass along what I have –

      People more experienced are now more active on this WFC, which I found out at Boskone because both Hartwell and one of these people were there. As an aside I was well prepared to chew out either or both (yes, I’ve chewed Hartwell out on WFC matters) and glad I didn’t have to take the time.

      The main part of Hartwell’s concerns was already taken care of: you can now register online. The rest of the website isn’t active yet but while they should get the boilerplate up it is boilerplate.

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