Kathleen, Kage and the Company

Kage Baker suffered from migraines. She left them to me, along with all her writing notes and Beatles memorabilia.

I had no vestige of a migraine until menopause heaved over my personal horizon. Kage, Kimberly and Anne all did – I held a lot of hair out of the way of helplessly vomiting siblings, and dispensed a lot of strong tea and black coffee in darkened rooms: but me, I never had so much as a hint of an aura.

Then, about the time that I developed hot flashes and a 1000% increase in chocolate appetite, the migraines started. I’m lucky even so – they are rarely painful. Instead, they mostly rely on vertigo and visual distortions to do their evil work. And thus, the only way to get through is still to lie down and sleep ’em off. I can’t even rely on a painkiller to help, since the buggers don’t have the good grace to hurt.

Instead, I get black and silver patterns of thorns growing all over my visual field. It’s like Sleeping Beauty’s castle being over-run by roses in fast forward, and in a Gothic style. Metallic lace, mirror-and-jet thorns, a rose garden out of a Cocteau film … rather lovely, really, but when you’re peering at the world through the edges of the daggers and thorns, it’s very confusing.

Besides, I can see them growing. Unnerving to the max, lemme tell you.

Anyway, I spent this afternoon lying down and sleeping it off. The Orange Fluff Cat came and slept with me, which was very nice; and I managed to stay actually horizontal in my own bed for quite some time before Harry decided I had probably died and started bugling in alarm. A bored parrot will reliably raise the actual dead, Dear Reader. I am sure one travelled with Jesus and the disciples.

Anyway, I am still sorting through my thoroughly disabled sensorium this evening. The exploration of how lucid dreaming and good painkillers effect post-surgical awareness of spatial relationships will have to wait. Heaven only knows where I think I’m waking up in the middle of tonight – last night, I thought I was in the Great Cabin of the HMS Surprise from the film Master and Commander. She lies at anchor these days at the Maritime Mueum in San Diego, and I was privileged one very early morning to run all over her with Kage before the day’s crowds appeared …

It’s the only way to get through the little hiccoughs that crop up during migraines and post-surgical healing. Use your thoughts’ disorder to make your dreams more interesting! If the brakes are off your imagination, head for a good downhill grade and let ‘er rip!

Sometimes I understand why people want to do drugs …

Kage Baker was of the opinion that, when one was ill, one should take time to fully recover before attempting to leap once more into the millrace of life.

At least, she always told other people to do that. She herself seldom took any time off at all, and would resume her duties and activities as soon as her fever broke or her wounds healed. It’s different for me was her philosophy.

Most people feel a certain amount of that, I suspect. We’re always so sure we can beat the odds, and return to the fray as soon as our heads clear … certainly, I’ve depended on an inhumanly robust system to get me back on my feet in record time. Usually works, too.

And, in fact, it’s working this time. For a 62-year old with a few health problems, I’m healing from my nephrectomy very quickly. I was on my feet in mere hours, and home in 3 days;  the pain is nearly gone, and my incisions are closed and healing. However, while I am over-all doing well …. this whole experience has not been as easy as I had anticipated.

I think I forgot I’m no longer 18. It’s an easy mistake to make – despite the evidence of mirrors, we do tend to overlook that passing of time on the insides of our heads. I’m still demonstrably that young woman who spent Halloween of 1971 eating smuggled pizza and clandestine chocolates. Hell, I’m still that only slightly stiffer woman who was climbing in and out of her hospital bed in 2011, a mere 8 hours after a hysterectomy, rather than use a bedpan.

I don’t do invalidism.

On the other hand, I currently have 4 stab woulds in my abdomen. They’re better than the gaping canyon left by the original kidney surgery – none more than 4 inches long – but they are all about 6 inches deep … and, something I keep forgetting, a major organ has been removed and left a void in my innards. My innards apparently object more than I had anticipated.

The pain isn’t bad, and my drugs are good. But I have no stamina. I’ve spent the last week pretty much asleep and/or stoned, Dear Readers, which has put a serious crimp in my bloggery. I do not currently bend especially at the waist – rather like an Ent, reclining has been achieved by a very brief fall onto a slanted surface. The only way I’ve been able to sleep has been in a recliner – the cats love this, as my pillow and blankets and I are thus at their constant disposal; but getting me in and out of the thing has been problematical. A winch would have been handy …

But last night, I finally managed to lie down in my own bed and sleep lying flat! The bliss of being able to stretch out one’s legs and go limp cannot be over-estimated, Dear Readers; even with sad kitten eyes blinking at one in the darkness.  The Orange Fluff Cat managed to content herself by stealing one of my pillows – I don’t have the stamina to successfully wrestle a cat for possession of my own pillow.

Still, I am much better. And I am getting more so. I haven’t had any pain killers at all today; which means I can be pretty sure of what dimension I am in. It’s been kind of up for grabs until today … I seem to have spent a lot of time up near the ceiling lately.

Things are better now, though. And I don’t miss the damned kidney one itty bitty bit. My various surgical stab wounds are all purring with satisfaction.

Tomorrow I’ll describe the peculiar dimensional hub I’ve been inhabiting at night. Strange scenes, indeed …

Hi – this is Neassa. I just heard from Kimberly and the surgery was a success!

It took longer than the surgeon had planned. He apparently didn’t believe Kathleen when she told him just how much scar tissue she has!

Kage Baker hated waiting.

Anticipation was not her favourite state. The wait for something did not heighten the excitement for her, nor add spice to the occasion. The only manifestation she enjoyed was wrapping up birthday presents the night before, and then displaying them to gently torture the recipient with futile curiosity – and she herself did go happily nuts trying to figure out what was under the ribbons and paper. A dedicated present shaker, Kage.

When something for which she had been longing became finally available, she wanted it right then. We frequently went looking for soundtracks to movies she liked on the way home from the theatre – Kage wanted to continue that experience right now. Sometimes I just didn’t tell her when some special film or book or game was coming out, just so I’d have a chance of giving it to her for her birthday or Christmas – and if she found out anyway, there was no help for it: she went after what she wanted like a hunting cheetah.

So what’s wrong with instant gratification she’d say reasonably. It’s not like I get bored with these things right away.

And in that, annoyingly, she was right. She didn’t get bored with new toys. Once her attention was engaged, it stayed that way – it’s why she was content to watch The Wrong Box (for which she had hunted for decades) over and over and over. Her favourite video games remained her favourites forever. And once Kage found something she loved – shoes, jeans, a particular rubbing spice for meat, a specific shade of sunglasses – she went to great lengths to duplicate it whenever she used it up.

Some of it may have been the Asberger’s. Kage disliked change, especially when forced on her from outside. But some of it was just that she never wanted to leave that level of satisfaction that she felt when she achieved acquisition. She hated waiting: but she could, conversely, prolong the joy of finally getting something forever. It’s a rare combination.

For my part – I learned long ago to be patient. I can anticipate happily, and enjoy a wait. (It’s why I always carry a book or ten with me.)  I think Kage taught me some of her staying happy trick.  I’d like to think I taught her to wait a little more peacefully, in turn. Countdowns were a big help in that. She learned to enjoy crossing things off the calendar: with big, malicious red X’s, usually, exulting over the destruction of another day between her and her desire.

I’ve waited 50 years to get rid of this damned kidney. I spent my high school years flat on my back – and not in any interesting John Hughes teen flick way, but literally staring at the ceiling because I couldn’t stand up. I became an expert in throwing up into bags, in empty Tupperware, in waste baskets and extra-large Slurpy cups – you throw up a lot with uremia. Admittedly, the slightest twinge of pain in my side now induces a panic attack in me – but I can drive several hundred miles bent over at a 20 degree angle.

I’ve been corseting since I was 14 years old. One of my sillier doctors was convinced I had a floating kidney, and advised my wearing girdles to keep it in place. Of course, that only helps if you put the damn thing on before you stand up … wiggling into a corset while lying down is not easy, even when one is a lithe 16.

I was so happy to be rid of the boning when I was 18, that I gave up most underwear for a while. But then I joined the Renaissance Fair and promptly ended up back in corsets for the next 40 years … but at least I could put them on standing up. And make them prettier, too.

You have time to come up with an astonishing range of coping mechanisms when something hurts for a half century. Patience wears out very quickly – but stubborn rage can get you through a lot. Burning hate, endless wrath, the determination to never, ever let your enemy win – my, that becomes a real help. My sweet pixie nature curdled a bit over that time, but my stamina became something positively mythic.

Tonight is, I sincerely believe, the last time I will lay down to sleep with the fear I’ll wake up with those iron teeth of pain in my side. If the laparoscopy works, the new incision will be covered with a mere band-aid: but even if they have to cut wider, and leave me with another foot-long scar, I won’t mind at all. It’ll be the last big red X on that particular calendar.

Tomorrow is Day Zero.

Kage Baker was a patient and methodical person. Her motives, methods and logic were sometimes so weird I wanted to set my hair on fire – but once she had a plan, she worked toward it with an admirable efficiency and determination.

We went through all the 9 Circles of Bureaucratic Hell, getting Kage treatment for her cancer. Kage, early on, just surrendered to the apparent tide and trusted me to set her course: she hated dealing with people anyway, and honestly could not cope with the petty secretaries and clerks who stood between her and medical care. That happens to a lot of sick people – believe me, Dear Readers, if any of your loved ones becomes seriously ill,  you find someone to be their warrior/advocate.

They’ll need it. So will you, when it’s your turn in the barrel. Kage had me, and while I ultimately did not succeed in saving her life, I at least made her last year a lot less painful and a lot more pleasant. It was my job to listen to the doctors and figure out what they said.  Kage’s job was to listen to me and do what I told her, go where I took her, sign where I advised her. She patiently and methodically did all that. It wasn’t her fault that it didn’t quite work.

Once of the things she ordered me to remember, was that I wouldn’t be able to manage this myself if I was alone. She knew that my personal inclination was to clam up and try to do everything myself; she warned me not to do that. Don’t you dare try to live by yourself! she commanded, as we sat waiting for her last ever guests to arrive. You haven’t got the sense God gave a goose.

Which was pretty funny coming from someone who thought her insides were solid like a potato, until she had to research anatomy to write about it. However, most evidence indicated Kage was fairly correct in her evaluation of my share of sense. So when my health took its unnecessarily melodramatic nose dive in the winter of 2010, I was already safely living in Los Angeles where my sister Kimberly could keep an eye on me.

Kimberly (who is also patient and methodical) has been my safety net ever since. She’s gotten me through all the ridiculous illnesses that followed my collapse in 2010: heart attacks, diabetes, klebsiella, uterine cancer, and now kidney failure. That last one is especially unfair to Kimberly, since – like all my unfortunate friends and family – she’s also had to deal with me getting sick from the damned thing over and over through the last 50 years. But she did it.

She taught me how to make and keep a daily meds schedule – Kimberly is an avid fan of all office supplies and aids, and has colour-coded significant portions of my life. She has introduced me to Levenger bags, Circa filing systems, Post-it Notes in actually interesting colours and sizes. She nags me to write; this Countdown Series was her idea.  And she makes sure I actually read all the information that comes in the mail from doctors and medical groups and the Federal Gummint; and then she actually files it in these big, easily accessed notebooks …

If Kage was a devotee of the God of Writing, Kimberly is a priestess of the Goddess of Librarians. They were and are marvels of skills I seldom bothered to exercise, and they have both shaped and saved my present life.

So here I am, on Day 3 counting down to my much-anticipated nephrectomy. I finished the check-in interview today – you can check in in advance for surgery these days; better than airlines! – and all I have to do is decide what I am taking to the hospital. And Kimberly is making the packing list, a task at which I have always sucked … Kage used to do all that.

But tonight I can relax in the knowledge that my Kindle and my Buke will be available when I wake up enough to use them. Someone will bring me pizza, and red jello if the hospital only has nasty green jello. When I come home, someone will know where my clothes are, will make sure I remembered to pack underwear and shoes, and will have a folder ready for all my discharge instructions.

So here’s the ultimate wisdom I have learned so far in life, Dear Readers:  Make sure you have sisters.

Kage Baker, as I have noted often before, loved Halloween.

When I was 18 and had the very first surgery to try and correct my kidney, I was in hospital at this same time of year. The place was decorated all over, especially as it was a children’s hospital; a lot of what Kage sneaked in to me was Halloween candy. I can’t say much in favour of those teeny little cheating “fun-size” chocolate bars, but they are easier to hide as contraband.

Halloween that year, I was home but not allowed to go out. By age 18, I was mostly playing guardian for littler kids, but I still got to dress and run around: so I was bummed to be grounded. Kage took smaller siblings out in the sycamore-haunted Hollywood Hills; Kimberly and others of our friends went Pumpkin Caroling at the Shriner’s Children’s Hospital … I stayed in and handed out candy.

With luck I’ll be home in time for Halloween this year, too. I’ve quite run out of small children to escort (kept that up until I was 40, though!) so I will be delighted this year to stay in and watch the parade on the front porch. Kage was happy to do that in her last year; then I drove her down to the sea to see the black waves come in glowing green from a red tide. Kage clapped and hoped for zombie pirates: she really, really loved Halloween.

Most sane people do, I think, once exposed to it. I’ve known lots of recently-acquired Americans, who are even goofier over that particular holiday than those of us who grew up with it. Grown-ups, in particular, are thrilled by dressing up and running around in the dark eating candy. Halloween is now celebrated in some form over most of the industrial world – Europe, certainly, where Christian and Celtic backgrounds abound; but also in China, Japan, the Philippines. Australia and New Zealand and South America. And this is in addition to whatever native harvest or Day of the Dead celebrations may also be observed. People like Halloween.

Unless you are some variety of fundamentalist, I guess. Some fundie Christians think it’s demonic, sadly; and here in Los Angeles the Hispanic fundamentalists go so far as to tell their kids it’s Satan’s birthday. (It’s not. In the mainstream Christian canon, Satan doesn’t get a birthday.) I can’t believe fundamentalist Islam looks kindly on it, either, as they seem to be against most fun in general. And I’ve actually been scolded by some fundie pagans for “trivializing” Samhain with Halloween decorations

But there was a Buddhist temple in Hollywood that used to gleefully give out candy to trick-or-treaters, and I’ve known even Orthodox Jews who take their kids out as long as Halloween doesn’t fall on the Sabbath. There’s All Hallows, and there’s Dia de Muerto, and there’s the various permutations of Samhain proper – it’s the source and original of Halloween, after all, but Halloween now is something else entirely, something just as universal and a lot sweeter. Some of the neopagans get weirdly grim and proprietary about the festival – I think evolving an organized religion might be bad for you at some level …

What is celebrated all over the world now is a refreshingly secular holiday. Dress up! Run around in the dark, and make it safe and comfortable for at least one night of the year! Beg for – and give out generously – sweets!  Light lamps in the night to spread warmth and cheer!

That was what Kage most especially loved. For her, it was the start of the winter season. And when you know it’s gonna get cold and dark for the next several months, there’s all the more reason to string coloured lights in the windows and give smiles and goodies to strangers.

And if, when all the Jack O’lanterns have burned down and filled the late air with the incense of guttered candles and singed pumpkin – if, when you’re sitting in the quiet dark living room with a couple of candles and the last bowl of candy – if, when the laughter in the streets has fallen silent – if, then, you go pour out a little salt and grain and wine on your threshold: well, that sacred moment will not be diminished by the procession of masked and giggling children at your door.

Really.

Kage Baker had very firm ideas about how trouble should be apportioned out in any one person’s life  She didn’t expect to glide scatheless through the woes of everyday life – she was just quite sure that a certain balance was to be expected of any well-behaved Fate.

If you get hit with a big problem, she always insisted, the small stuff should leave you alone.

She was adamant about this, despite the recurring proof that Fate was not well-mannered, and that a myriad of petty troubles rode whooping and howling in the train of any large one.  Sometimes it meant she could be devastated by a little screw-up that appeared when she was emotionally unprepared – but more often, it gave her the ability to rise above the small stuff in the righteous conviction that it wasn’t supposed to happen and thus was essentially unimportant.

So I guess that was at least a partial win. Kage had a whim of iron, and it worked for her.

Personally, I expect trouble of all sorts and sizes to be pretty much perennial. I wish it weren’t so, of course – and I get still be surprised at just how petty, constant and freaking annoying the little stuff can persist in being. You’d think I’d learn, you know?

Headaches, hangnails, cats that throw up in the dark in front of the bathroom door, dead batteries in your flashlight, INK OUT warnings from your printer: the Post Office cannot compete with the steadfastness fidelity of small, horrible, exasperating calamities. Not even when you’re waiting to have a major organ removed.

No sooner did my kidney finally get its marching orders, than it decided to explore the broad spectrum of infections available to it. Maybe internal organs get special catalogs, or wi-fi, or something. All I know for sure is that – having managed to avoid minor plumbing problems for decades; rare luck for an aging lady – I have spent the last 3 weeks battling damned near constant genito-urinary tract inflammations. You could probably clean up the entirety of Gruniard Island (which was quarantined for 48 years after anthrax experiments by the UK War Department) with the amount of Cipro I’ve taken this month: which gifted me with cramps, diarrhea, and dissolving finger prints.

On the other hand, I’ve lost a lot of weight. On the other other hand, nearly everything I eat makes me ill. On the other other other hand, I’ve discovered Norco, which is a painkiller that essentially reboots your entire nervous system. But I’m needing more hands all the time.

My car has been safely parked in the driveway for 3 weeks; it’s been difficult for me to drive, no one else in the household can drive my manual transmission Cruiser, and it can’t be left on the street or it’ll impede the street cleaners. (The street cleaners only come out when I am parked on the street, but it’s a guarantee they will if I am.) So, inevitably, over the weekend, my car abruptly began shrieking and blinking and honking hysterically. Something had set off the alarm system. Probably raccoons.

It’s never, ever happened before – and now, when I can barely bend over to try and find the kill switch, it goes amok. I couldn’t find the kill switch, I don’t have a remote, and even disconnecting the battery did not reset it – I had to pull the fuse to shut it up. And even then, the car went into security catatonia and would not start. So I called AAA today. But the AAA alarm system tech couldn’t turn the alarm off OR the engine back on, so he decided it was dead and sent me a tow truck. Aaaargh!

But then! My normal faith in the universe finally paid off! The tow truck guy had schematics for a PT Cruiser on his Smart Phone, mirabile dictu, and located the cunningly hidden and invisible kill and reset switch. So now, if my car starts beeping again when trucks rumble down the street, I can at least hobble out and silence it.

I still wish the small stuff would stop. But one triumph makes up for a lot of disasters, especially of the honking-howling-beeping -blinking varieties. Maybe Kage was right, and the minor shit doesn’t matter because it just shouldn’t happen anyway. It isn’t really real unless I let it be, right? Right.

Time to reboot my nervous system again. I shall survive!

Kage Baker was a keen observer of hospital decor.  Through most of our life, she was the one visiting me; though I rather made up for that in her last year.

She had several amazing rooms at the Arroyo Grande Community Hospital. They’d just completed a fund raiser, where various donors got to select the decor of newly-refurbished hospital rooms; Kage got some hilarious ones. The two best were the Jungle Room – leopard print wallpaper, prints and photos of all sorts of wildlife – and the Wine Room. The Wine Room had flocked wallpaper with life-sized velour bunches of grapes, and pictures of vineyards in all seasons. It also had faux crown molding – Kage was crazy about crown molding.

I’ve had far too much occasion since she died to check out hospital decor on my own. Cedars Sinai, for instance, is notable for the truly amazing number of aquaria it contains. In some cases, they take up entire walls, or are built into floor to ceiling pillars. The best example, I thought, is in the IV Therapy Day Room – rows of nice recliner chairs in a vast room, under a glass atrium roof held up by glass pillars full of tropical fish. I used to lie there under the shadows of birds’ wings and darting fish, and wonder what would happen if an earthquake hit …

Glendale Memorial was in the throes of a refit when I was there for an extra stent in my coronary arteries. However, their corporate colour was a lovely shade of blue, so the accent colours everywhere were very nice. Also, half their rooms have a view of the Griffith Park hills, which is hard to beat. Best of all, they’re close to TWO Starbucks – and I always need real coffee smuggled in, since what they serve in hospitals is vile.

Next Monday, I report to USC Verdugo Hills, in La Canada. It’s set on a hill, amid parking lots hidden in groves of trees; the architecture is very smooth and modern, with lots of polished stone accents. The waiting room is full of comfy chairs, and has a tea and coffee bar for anxious relatives. There are no aquaria, but there’s a beautiful rock garden at floor level – it was obviously planned as a water feature, but for now the pretty little creek is a gravelled Zen pathway. It needs rain. The corporate colour is sand, alas; I guess it’s soothing, but it makes for dull fuzzy slippers.But the views from the windows should be keen. And the gift shop carries See’s chocolates.

When I was 18, and had the original ureter repair that will now be utterly removed at last, I was in Children’s Hospital in Los Angeles. See, when I started seeing a doctor for the pain in my side, I was 14 – when it finally became obvious even to my surgeon that I needed intervention, I still had a pediatric nephrologist. So they admitted me to Children’s.

That was hysterically funny, in many ways – they had to send next door to Hollywood Presbyterian Hospital for gowns that would fit me: I was neither tall nor fat at 18, but I came equipped with breasts and hips that couldn’t be accommodated by the Disney-printed gowns all the other patients got. They had to send next door for a pre-op prep kit, too – the ones for kids don’t come with razors, or adult catheters; in fact, they eventually had to send next door for  a surgical tech who was more up-to-date in catheterizing a grown woman. I was very popular with the residents and interns, though. I followed orders, I could hold an adult conversation; and Kage and Kimberly smuggled in pizza. And there were, you know, the breasts …

Now I’m a fat old lady, of course. But I will be a good patient, just because I will be so relieved to be done with this damned kidney! And I know that Kimberly will still smuggle me in whatever I need: there is a good coffee shop AND an exemplary bagel store right across the street. Always remember to be hospitalized someplace near good drinks and snacks, Dear Readers – and make sure your sister has a biiig purse.

Man, with bagels and decent coffee – and my kidney exiled to the Outer Darkness, wailing and gnashing its teeth – I’ll be as happy as a clam.

Kage Baker frequently despaired of my health.

Not that it was that bad. I seldom got colds or influenza or even migraines; I don’t have a bad back or trick knee or compulsive shin splints, or any of the other problems that can accompany an (often violently) active life. Outdoor theatre in all weathers and every season is arduous – but I dodged most complaints.

What drove Kage (and all the rest of my friends and family)  nuts was that I seemed to save up my sick days for disasters, and then fall over in throes of something improbable. In her own last days, she ordered me not to try living alone, lest I collapse some day from dengue fever or an alien parasite, and end up as tale of horror on the evening news.

The longest-enduring of my few chronic problems has been – as I have frequently mentioned – the shenanigans of my right kidney. After putting up with it for 50 years, I finally found a doctor who agreed it had outlasted its usefulness. I’ve been technically in kidney failure for months now, but the Final Countdown began today!

A week from now, I’ll be recovering in my hospital room in USC Verdugo Hills, free at last from my evil kidney. The last 3 weeks of waiting have been a trial and tribulation. but now the end is finally in sight!

I’ve been off the grid for these weeks because I have a Crazy Straw lodged in my right ureter. It’s actually a ureteral stent, but it looks like a Crazy Straw – and feels like one, too. Imagine this as part of your personal plumbing:  

Pro: it connects my kidney to my bladder and forces it to drain; left to its own devices, my kidney just pumps out urine into a dead end in my blocked ureter until DYI disembowelment begins to seem sensible. Con:  it irritates everything to which it’s connected. I haven’t been able to sit up for very long; nor to walk very far; nor to stand up for more than about 15 minutes.

It’s meant to flexible, but also to lodge itself securely in place. Wearing this thing has been a minor hell. Also, I’ve gone through 3 cycles of Cypro to keep down the inevitable UTI’s, and have again lost my fingerprints … though I assume I could kick the ass of any anthrax bug that tried to infect me. That’s the other thing Cypro is for, besides unrelenting UTI’s – anthrax. Small wonder Kage didn’t trust me to maintain my health.

I would have been as merry as a grig if this stent were anything like the 5 in my coronary blood vessels. Those look like tiny Mexican finger traps, made of platinum – I wish they glowed through my chest, like Iron Man’s reactor, but at least they are painless. They don’t show, but I know that my heart of surrounded by these:  

Now, that is elegant.

But now – it hardly matters! Today I had my pre-op blood tests; Friday I have my pre-op registration talk with the hospital. And on Monday morning at 9 AM, I shall be blissfully asleep in the knowledge that my nemesis kidney will soon be gone …

So, here I am, Dear Readers, back to blogging. Thank you for your patience. These last 3 weeks, I have been just clinging on, sitting as still as possible, waiting. The wait is finally some fun, because the end is near! Time to count down the days until I am free!

This Halloween, my own personal monster loses.