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[cancer|conventions] Schedules, short term and long - Lakeshore — LiveJournal
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Jay Lake
Date: 2010-01-29 05:35
Subject: [cancer|conventions] Schedules, short term and long
Security: Public
Tags:australia, books, calendula, cancer, child, conventions, endurance, health, new zealand, personal, shellyrae, travel, work, writing
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 the_child 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 the_child, 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. amberdine made a wise observation in comments yesterday, which dovetails with discussions I've already been having with calendula_witch and shelly_rae 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. calendula_witch 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.

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martyn44
User: martyn44
Date: 2010-01-29 13:47 (UTC)
Subject: (no subject)
Jay, you're not giving in to the cancer, but you only have so much energy and giving any of it to unnecessary negativity leaves you less for fighting the good fight. It is a question of fighting smart, being devious and winning, rather than charging downhill, waving your claymore while shouting your battlecry and getting blown apart by a volley from the redcoats. That's glorious in song but stupid in real life. You are not stupid. Accept what you cannot change and kick shit out of the rest.

It is a real battle. You have finite resources. Don't waste any of them. You might not like but but - like Al Davis says - just win, baby.

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adelheid_p
User: adelheid_p
Date: 2010-01-29 14:15 (UTC)
Subject: (no subject)
I, want to echo, that making temporary changes due to the needs of your body in fighting the cancer with the help of chemotherapy and healing again is not letting the cancer win. Definitely view this as a short term compromise and definitely heed what amberdine said in her comments to yesterday's post.

My father had major surgery in July to remove esophageal cancer and required no chemo. (They caught it really early thanks to Plavix.) Still he had a couple of months after the surgery where he needed to seriously curtail his normal routine and rest and heal and adjust to his new internal configuration (he's still adjusting). He's now, six months later, walking two miles again and resumed most of his normal routines including volunteering at his church and other places. (My dad is busier in his retirement than he was when working.)

My point is, that it's entirely reasonable to think of these changes as short term for the purpose of winning against the cancer and not as giving in to it. I want you to win, too.
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Lawrence M. Schoen
User: klingonguy
Date: 2010-01-29 14:33 (UTC)
Subject: (no subject)
Hmmm, I wonder if there's a t-shirt in the whole "coastal elite" thing. I like that so much better than pixel-stained techno peasant.
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shelly_rae
User: shelly_rae
Date: 2010-01-29 14:54 (UTC)
Subject: (no subject)
Don't you mean "yes, Shelly Rae, sleeping in the recliner really does help?"

Your day is now NORMAL Jay. Few people can manage the kind of productivity you usually put out. Yes, it's not normal for you, I understand that. I know all too well how frustrating not being myself is. But sweetie, it's not giving in to cancer, it's taking time to care for yourself. You'll go back to your usual days after 10 more chemo sessions--20 weeks. But for now you need to gather your spoons. Only two things matter right now. You, Jay the physical meat person, and The Child. NOTHING ELSE MATTERS!!! Not me, not work, not friend's messed up lives or issues, not cons, or writing or, the laundry. Even calendula_witch understands this. Cut yourself some slack, use the titanium battlespork, take what you need. This is one of the few times in your extremely generous life when you take. Put yourself first. I'm sorry but I think you made a mistake in agreeing to handle the late meeting. You are doing CHEMO Jay, what's that compared to someone staying an hour or too later at work? Were you even at your best during the meeting?

It's not weakness to ask for help, to demand slack, to take up offers of help. It's human. Remember ghat by giving to you we make ourselves feel better. I for one ask nothing else of you.

Don't make me come down there ::somehow manages to shake a finger while hands are on hips:: ::laughs:: of course I'll come down there.

Ok here endeth lesson. Love you. Will teach you more in other venues less public than this.

It's annoying, yes, frustrating, yes, but it's only temporary. You have the trip to NZ & AUS to look forward to--that's as good as a triathlon and will certainly take much longer.
Anon
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User: joycemocha
Date: 2010-01-29 16:26 (UTC)
Subject: (no subject)
I will second everything shelly_rae says.

She's right. Listen to her.
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markbourne
User: markbourne
Date: 2010-01-29 17:10 (UTC)
Subject: (no subject)
More agreement with vigorous head-nodding here.
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frabjouslinz: Me Street
User: frabjouslinz
Date: 2010-01-29 17:38 (UTC)
Subject: (no subject)
Keyword:Me Street
Fourthing the Shelley! She is wise and wiley and knows things. Hugs from me. Fight smart.
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calendula_witch: arms
User: calendula_witch
Date: 2010-01-29 18:04 (UTC)
Subject: (no subject)
Keyword:arms
Yes, even the witch understands this. Most especially she does. We're all here for you, my love, my duckling; and even if we sometimes fall over, you do not need to pick us up--we pick each other up.

This is temporary. Long, but temporary. A colossal pain in the ass (quite literally), but temporary. A huge disruption, but temporary. No fun whatsoever, but temporary. Cancer sucks. Yes, yes, yes. But temporary.

It will be over in June. Then you pick yourself up and march forward again. Meantime I'll have another collab novel drafted, if you want, for you to play with. It's only a few months...in the grand scheme of things...the blink of an eye.

And thank you Shelly for your love and wisdom!!! :-)
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Kenneth Mark Hoover
User: kmarkhoover
Date: 2010-01-29 17:53 (UTC)
Subject: (no subject)
Hang in there, man. Thinking of you every day and wishing you only the very best.
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Michael Curry: minifesto douglass
User: mcurry
Date: 2010-01-29 18:10 (UTC)
Subject: (no subject)
Keyword:minifesto douglass
I think I'm pretty much with shelly_rae as far as finding a way to look at this that will allow you to take care of yourself without driving you entirely insane.

As for WFC, yeah, I can completely see your points. The fact that WFC 2010 still doesn't have either online registration or even hotel rates on their website, while WFC 2011 has both, is both troubling and annoying. For me, it's on the edge of driving range, so I'll probably end up going anyway, especially since I skipped WFC last year.
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They Didn't Ask Me: darth-winslet
User: dr_phil_physics
Date: 2010-01-29 18:52 (UTC)
Subject: (no subject)
Keyword:darth-winslet
That is SO embarrassing. And a shame, because Columbus OH is so much closer that San Diego (2011) or San Jose (2009).

Dr. Phil
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User: jess_ka
Date: 2010-01-29 19:19 (UTC)
Subject: (no subject)
Keyword:polarbearlove
I know all about catastrophic GI issues thanks to the scleroderma. I've spent nights that were truly horrible.

Hang in there.
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cathshaffer
User: cathshaffer
Date: 2010-01-29 19:20 (UTC)
Subject: (no subject)
This has been me for the past five years. I have been a mother, a full time freelance writer, caregiver for a person much sicker than you, and a primary support person for my husband whose job is extremely stressful and demanding (for no good reason). All of this means that I lost control of my schedule a long time ago. I have been through anger and self-pity with this many times before I got to acceptance. But your friends are right. Acceptance is what is required.

The issue is more crucial with you because as the ill person you need to be even more careful with your resources. You think you're fighting the cancer by depriving yourself of sleep or refusing to adjust your goals and priorities. But the worst case scenario here is that you will over stress your body and your infusions will start getting canceled because your body is not handling them well. Don't make excuses and say that you will slow down if it looks like it's going to happen because honestly you don't f-ing know when the chemo truck is going to run you over or when it is going to pick you up and drive you to poughkeepsie. You need to treat every infusion like it is a marathon--you have to prepare for it and you have to rest and recover from it. Food and rest and your daughter are your priorities, and everything else is optional, even your job. (Disability could be in your future.) Your treatment protocol is optimized to work exactly as administered. If you miss a treatment, it is another two weeks for the next one--that is a whole month your cancer cells get a break to reproduce and possibly mutate. You can't afford to miss a treatment, and if you overwork yourself and have a complication, you could even miss two or three before you get back in the swing of things. We had many interrupted cycles with my mother's therapy and it is very frustrating.

On an emotional level, I understand extremely well how frustrating this is. I was angry at the beginning feeling like I had been singled out not to have control over my life. It's been been a slow process of growth and maturation for me to realize that what happened to me is normal. We are all interconnected and we all have huge responsibilities in life (or if not, someone else is taking it for us). Almost everyone I know has been through something similar. Those who have not are just young and lucky. When I realized this, I felt embarrassed that I had been so self-centered as to feel entitled to be able to call all of the shots in my own life. What's better is that I've since learned that with an abundance of patience, I can still make progress on my goals. The log jams do clear every once in a while. I've learned I can't procrastinate. Other people can, but I can't, because I never know what's going to be coming at me tomorrow (cras). We have slowly solved some of these problems, but I still understand that things are different for me now. I don't take plans for granted. For example, my yoga studio offers something called a 60-day challenge. Do 60 classes in 60 days and you get a free month of classes and a T-shirt. I've cheered others on, but I know for me, at this point in my life, I'm never going to be able to put yoga first. That's okay with me. I've accepted it.

With regard to the exercise, you should probably only do it if it makes you feel better. If it gives you more energy for your day, go for it. If it's draining you, just rest, and get back to it when you have a better day. And you will.
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cathshaffer
User: cathshaffer
Date: 2010-01-29 19:37 (UTC)
Subject: (no subject)
By the way, reading this over, it comes off kind of intense. Please consider me to have written it in a friendly, chiding tone, rather than scolding and strident. Also, I didn't mean to say that you are currently depriving yourself of sleep or not taking care of yourself, but only what could happen if you do.
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Jay Lake
User: jaylake
Date: 2010-01-29 20:32 (UTC)
Subject: (no subject)
I did take this as you intended. Thank you. And more to come when I have time.

And to be clear: I am not depriving myself of sleep or self-care. I'm just fussing, hard, about the cost of that.
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Gary Emenitove
User: garyomaha
Date: 2010-01-30 02:54 (UTC)
Subject: (no subject)
Poughkeepsie?? jaylake probably just went running for the bathroom after hearing that. Like he needs another excuse to run to the bathroom...
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shaolingrrl
User: shaolingrrl
Date: 2010-01-29 20:23 (UTC)
Subject: (no subject)
A lot of smart people commenting. I hope you listen to them.

My suggestion? Read The Art of War by Sun Tzu.
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User: quantuminsanity
Date: 2010-01-29 22:09 (UTC)
Subject: (no subject)
You are still more active while on chemo than I am normally....
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Msconduct
User: msconduct
Date: 2010-01-30 02:05 (UTC)
Subject: Travel to NZ
I'm thrilled for you that you'll be visiting Our Fair Country - if you're already familiar with this kind of long-haul travel then my apologies and ignore what comes next. Otherwise, a small warning:

As a New Zealander who travels (which is a large propoetion of us) I'm more than familiar with the dificulties of travel to/from here and the US or the UK, but I've also hosted numerous people from overseas for whom it's their first trip. Without exception, they are shocked at how much harder the trip was than they were expecting. The long flight is difficult enough, and the massive time change combines with that to do people in. If it's at all possible, it's desirable to give yourself some time to recover after arriving before bouncing off into activities. (This isn't about your cancer, BTW: it's advice I give every first-time visitor.) I hope you have a wonderful trip.
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Jay Lake
User: jaylake
Date: 2010-01-30 03:02 (UTC)
Subject: Re: Travel to NZ
Thank you. As it happens, I grew up in Southeast Asia and West Africa, and am familiar with the demands of long haul international travel. Though admittedly, nothing so long haul as US-NZ. I'm very much looking forward to the visit!
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Gary Emenitove
User: garyomaha
Date: 2010-01-30 02:51 (UTC)
Subject: (no subject)
What shelly_rae said.

Plus this: You gave several eloquent commentaries about Spoon Theory, and here you are forgetting what you preached. Use your spoons, carefully, during this time. If you "have" to work extra hours then that uses up a buncha spoons. You have only so many spoons right now (etc., etc.) You will have plenty more when the chemo is over.
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Keikaimalu
User: keikaimalu
Date: 2010-01-31 00:03 (UTC)
Subject: (no subject)
So here's me (Melissa, and hey, great seeing you at the Bournes), disagreeing with not the intent but the content of some of what's been said.

I think when you're dealing with such a major and terrifying interruption in your life as cancer, you kinda have to rail against it. You have to get tough and angry, and refuse to let it knock you down. At least, you have to do so *in your own head,* because sometimes that's the only way not to run screaming out of the house and into oncoming traffic.

Getting mad and stubborn is part of girding your emotional loins. It's part of the precious and absolutely necessary denial that gets you through the process of reaching an accommodation with this kind of life-change. After each of my (outpatient) cancer surgeries, I was back at work *that evening,* because damned if I was going to let cancer threaten my job or slow me down. I had to prove to myself I really was tough enough to overcome it. Sort of like psyching yourself up for a berserker battle -- you can't do it in half-measures.

The only "but" here is that you may have to find a way to maintain that attitude in your head while secretly sneaking off and being really kind to your body, that poor steed that carries you around as best it can and needs a lot of TLC right now.

You're a smart guy, and you're probably in the middle of a mental process of coming to grips with it all. So do what you need to do in your head. Scream and rail. Just reserve a small bit of brain for making the cold, rational decisions about body-care too.

I guess what I'm saying is that just as you have to be kind to your body, you have to be kind to that part of your brain that needs to be angry and filled with, "Fuck you, cancer! You don't own me!" I suspect that's what you're doing.
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inflectionpoint
User: inflectionpoint
Date: 2010-02-23 04:08 (UTC)
Subject: (no subject)
You wrote, "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."

Oh do I ever understand that. Balancing that and self care is damn hard. Best of luck to you...
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