Improvisation In Daily LIfe

Kage Baker was diagnosed with uterine cancer in May of 2009. Her chemo and radiation therapies started in August of that year.

The changes in our life were not great at first, as neither of these therapies is especially onerous per se. A little nausea and loss of appetite, a little more fatigue. The new tattoos and piercings for markers and chemo shunts rather amused Kage; she kept saying, “At my time of life! I’m suddenly fashionable!” We’d been working for decades on how to keep beer cold and flowing in primitive circumstances – keeping Kage’s drugs cold and her daily chemo port clean and flowing was a snap. It was all plumbing, and I’m a decent plumber. Medical hardware proved less cranky than beer taps, too.

It required a bit more forethought to get through daily life, but Kage and I were experts on improvisation! A life in historical re-enactment and live theatre doesn’t give you any cancer specific skills, but it surely does teach you to think on your feet. Her drugs required an infusion every 6 hours, round the clock; luckily, I’m a dedicated insomniac, and Kage learned to sleep right through the rituals of attaching drug bulbs to her port.

She hated the gauze coverings supplied by the tech who trained me on her round-the-clock drugs: I knitted cotton covers, all the bright colours she liked best, so she had a full wardrobe of them. When someone asked (as sometimes happened) why she wore a single leg-warmer on her upper arm, she would make up some goofy political cause for which she claimed it showed support … she did the same thing in high school, wearing a plaid scarf forbidden by the dress code. She got away with it, too.

All the therapies continued. A cane and a wheelchair were added to her accessories (we did have fun with that wheelchair … and Steve, thanks for the loan of the cane.) In November 2009, Kage had surgery for the uterine cancer.  The wound was slow to heal and prone to infections; but I made a wound care kit from one of our dozens of baskets (props again!) that could be carried anywhere; slowly, we began to beat the infection.

I don’t relate this to complain. Please realize, Dear Reader, that we felt much hope – the therapies were working, the cancer was gone! And with every clever way we found to let Kage continue her daily routines, we congratulated ourselves. It was for that last 2009 birthday that she graduated to a little HP Notebook – it fit in her neat wood and brass steampunk briefcase, and was small enough that she could use it anywhere. She called it her Buke, after one of the ubiquitous devices in her Company series. A lot of writing got done on that Buke. And a lot of movies were watched.

Kage was diagnosed with brain cancer on Christmas Day 2009. The uterine mass had metastasized.  She had  surgery on Boxing Day, and was home by Twelfth Night.  The chemo stepped up and the radiation therapy changed focus to her skull. “Great,” was her comment, “first I get a late-life Brazilian and now I’m gonna go classic punk.”

“I’ll knit you chemo caps ,” I assured her. “Or I’ll shave my head, too.”

“Knit me a pink cap and I will run you over with my wheelchair,” Kage told me most sincerely. “And I refuse to be seen in public with a bald you.”

“I’m trying to show solidarity!”

“Kiddo, I can’t summon up solidarity with a bald mushroom – which is what you will look like. Buy me pirate scarves.”  And we did, but she never had to wear them – not to hide a smooth skull, anyway. She died before her hair got thin. But she wore the scarves anyway, with elan.

This week a year ago, her headaches came back. She always been prone to them, but this was different – it felt like the one on Christmas Day, and it would not relent. I called all her doctors – they swiftly and obligingly prescribed a variety of pain killers, but none worked. Kage turned out to be allergic to oxycodone and after 5 or 6 hours of vomiting and no cessation of pain, I took her back to the ER.

Another CAT scan. Kage hated those things; she said she left like a Cuban cigar in the tube. But the painkillers there at the ER worked. So we were both calmer when the results of the next CAT scan came in.

The tumour in her cerebellum was back, in the same place and bigger than ever. Over-achiever: it took it barely a fortnight to regenerate.

Kage was too weak for more surgery – not a good idea to go opening the skull every couple of weeks. evidently. They prescribed steroids, and painkillers that worked, and a more aggressive course of radiation and chemotherapies. I browbeat the hospital into taking her to the therapy sessions every day for week, via patient transport, while the drugs had a chance to work and she stabilized a little. Twice I got to the hospital late for her transfer, and they told me she had been discharged – no, they had just lost her temporarily. It was a bad week.

A week of that and Kage was ready to go on a shooting spree – which was, in a black way, a good sign. She had more strength. Her doctors approved a return home as long as she kept up the therapies, but now the hospital had misplaced her discharge papers … I got a call from her one afternoon, telling me that the shift change was due to start in half an hour and the nurses were short-staffed due to the flu epidemic: we could sneak her out!

A crazy idea. Maybe I was not precisely in my own best mind, either. But when I got there, there was no one within 20 feet of Kage’s room. Her roommate was wearily pressing the HELP button over and over, and told me no one had answered in 45 minutes. I suspect it was longer; I had to change several necessary items for Kage before I got her into the wheelchair.

But she was manic with the glee of escaping, and her moods were always infectious. We were both giggling as we set off down the hall at a brisk but not-panicked pace. We didn’t want them to chase us … as soon as we rounded a corner, though, Kage said: “Gun it!”

And I flew down that hospital corridor, pushing Kage to the light of the day at the great glass doors, and they opened  like magic and we were OUT … I think I picked her up bodily to get her in the car.

“I am never going back there,” said Kage. That tone of voice had meant she was serious since she was a tiny child.  “I’ll do whatever I must, but no more hospitals.”

“Gotcha.”

“Screw them all,” she decided. “Let’s drive down by the beach and then go home.”

So we did. We had to call the fire department to get up those damned 14 steps, but they were lovely guys and obliged cheerfully. Small towns can be great. And so we came home, and resumed improvising life.

About Kate

I am Kage Baker's sister. Kage was/is a well-known science fiction writer, who died on January 31, 2010. She told me to keep her work going - I'm doing that. This blog will document the process.
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