7

The Hormones Laughed At Me, Saying, ‘Sleep?! B!tch, Please––You Can Sleep When You’re Dead! Mwahahahahahaha!’

Because hormones are the next best thing to a Scooby-Doo villain, I guess.

Maybe they burned out the hot flash/night sweat circuits or maybe they just got bored. After a while, I got up to see if I’d accidentally taken my day meds instead of my night meds. Nope, that’s not why I’m wide awake at Stupid O’Clock in the morning. This is hormonal insomnia. Well, that’s okay. Hormonal insomnia isn’t one of my frequent fliers, and given a choice, I’d rather have hormonal insomnia than hormonal anxiety. Well, if I were given a choice. If it were actually that easy, I’d stick with the hot flashes and night sweats.

Truth to tell, I suspected I was going to have some sleepless nights coming up anyway. This December was my original estimated time of departure. I didn’t believe for a moment that it would be (I’ve probably said that about a thousand times, here and elsewhere). But when a doctor gives you an expiration date, it kinda sticks in your mind even if it doesn’t come true. And though I didn’t believe it, I tried to imagine what it would be like but as I never got within spitting distance of Death’s Door, it didn’t seem like a productive use of my time so I stopped.

Anyway, starting tomorrow, 1 December, every day is a party. They won’t all be noisy and lively parties; some will be too sedate to really be worthy of the term. But I’m calling them parties anyway. From 1 December till…well, who knows? Whatever I’m doing, I’ll be partying. If I’m writing, I’m partying. If I’m in the bathtub, I’m partying. If I’m reading, I’m partying. You get the idea.

I was actually going to wait until 1 January 2017 to start the party by springing out of bed and yelling, ‘In your face, Mortality, now turn up the music!’ And then I thought, why wait? Why not just start a month early? And you know, I couldn’t think of a single good reason to wait.

I’d start tomorrow but I’m going to need a day to recover from this monster bout of insomnia.

6

Dispatches From The Revolution––Dispatched

Sorry, ‘Dispatches From the Revolution’ has had to be dispatched. I left it up a little longer than I really intended to. If you didn’t get a chance to read it, or if you want to reread it, it’s in my collection Dirty Work, available as an ebook courtesy of Gollancz’s SF Gateway program. You can also find it in The Mammoth Book of Alternate Histories, edited by Ian Watson and Ian Whates, in The Year’s Best Science Fiction: Ninth Annual Collection, edited by Gardner Dozois, or Alternate Presidents, edited by Mike Resnick. For other sources, check the incredibly handy and useful Isfdb.org.

25

Late 2016 Already––Where Does The Time Go?

It’s the end of 2016 but it’s not the end of my life. Well, universe, I told you so.

Back at the end of December 2014, when my oncologist told me the prognosis was two years, possibly less, I told myself to look it square in the face. But the first thing that came to mind was the fable about the condemned prisoner teaching the horse to sing. (You can find it here.) The condemned man only had one year–I had two. I don’t know how things worked out for him, whether he got a pardon or a talented horse. But my horse seems to have perfect pitch. Who knew?

To be honest, though, I never really believed I’d be checking out at the end of 2016, not deep down. According to the Kübler-Ross Five Stages of Dying and Grief, this would mean I was stuck at the first stage: Denial. The others are: Anger, Bargaining, Depression, and Acceptance. But cancer patients are angry, whether they’re terminal or not–it comes with the territory. Recovery is a struggle and when you’re struggling, you’re not always even-tempered. Okay, maybe some people are so even-tempered and sweet-natured, they’d rot your teeth. Not me–I had to apologise to good people for behaviour I considered unthinkable when I was well.

There was Bargaining, too, and there still is. Each time I’ve seen my oncologist, the cancer level in my blood has dropped a little more. If I eat right, if I exercise, if I keep taking the hormones, if I do everything I can to stay healthy, can I keep this devil down in the hole?

As for depression––I’ve made no secret of the fact that I take medication for clinical depression. These are not happy pills, they don’t have me walking around in drug-induced euphoria. This is medication that allows me to experience appropriate emotions so I can think coherently, write, and behave like a real person rather than sleeping for twenty hours a day and crying for the other four. To me, depression means being unable to cope, with anything. So if it’s all the same to the Kübler-Ross school of thought, I’d like to skip that stage altogether. I was depressed for so long, I feel like I’ve already been there and I don’t care to go back.

Which brings us to Acceptance. I suppose if I never got past Denial, Anger, and Bargaining, I’m still pretty far from Acceptance. But seeing as how life is the terminal condition we all share, aren’t we all? The fact of our own mortality is something we take for granted–Valar Morghulis!, as the Braavosi say (I love the whole idea of the Braavosi; I still have a crush on Syrio Forel and Miltos Yerolemou, the actor who plays him; I even got to meet him once. But I digress). 

At the same time, however, most of us don’t feel mortal. We might be tired all the time because there’s always some crisis to take care of or some fire to put out, and even when we’re not besieged by serious crises, we’re getting pecked to death by ducks. But we don’t feel our own mortality. We know it intellectually but not viscerally–not ‘way down deep. As I’ve said before (probably more than once, because old people repeat themselves), we proceed through our daily lives as if, despite all evidence to the contrary, we’re going to live forever. We may not be thinking about how we’ll spend the winter holidays in 2216, but most of us don’t look at time that way. For most of us, yesterday’s over, now it’s today, and then it’ll be tomorrow, rinse, repeat forever. Even when you’ve got a deadline, you count from the day you’re at toward the deadline, not vice versa. (That’s my experience, anyway; your mileage may vary.)

In late December 2014, I had a theoretical deadline: late December 2016, give or take. And it was about a year ago––give or take––that I realised the theoretical deadline was no longer in force. Once again, I could live like I’d never die––twelve weeks at a time, at first, now increased to sixteen. I buy green bananas a month longer than I used to, stopping at the end of week 13. Not because I feel more mortal but to remind myself that the infinity in my grain of sand has a 16-week boundary.

Well. I’m not going to check out any time soon, and yet here I am, dwelling on something that isn’t going to happen, that I in fact never quite believed would happen anyway. Never believed on a gut level, that is. But the science geek in me did the research and I was well acquainted with the facts. I knew what I was up against. But what I also learned was that the results were not identical for everyone––some women did live longer than two years, even women with my form of recurrent uterine cancer, which has the worst prognosis. Obviously, a prognosis is not something carved in stone. And in everything I read was the statement that while this might be incurable for now, it is treatable, and has been treatable for many years. If I could hold on for two years, medicine could have progressed to where the prognosis had changed to five years. And five years beyond that, clinical trials might have produced a cure.

This is not silly wish-fulfilment fantasy optimism on my part. At the worldcon in Kansas City, a few of us fellow-travellers in Cancerland did a panel about living with cancer. One beautiful lady has stage-four lung cancer. You’d never know it, though, because she’s doing great––clinical trials pay off. In fact, over thirty years ago, my Aunt Loretta (one of my mothers) agreed to be in a clinical trial for a breast cancer drug. That drug is Tamoxifen. On her behalf, you’re welcome.

Rational optimism notwithstanding, however, I still remember how the last months of 2016 were projected to be the last months of my life and…well, I can’t help gloating. Who am I gloating at? Cancer, of course. Who else?

These days, I’m thinking not so much in terms of a singing horse as I am the story about the two people in the forest being chased by a bear. One of them stops and puts on fancy running shoes. The other person says, ‘Do you really think you can outrun a bear?’ And the first person says, ‘No, I only have to outrun you.’

I picture me and cancer being chased by a bear called Annihilation. It’s going to get one of us first, and I’m hoping thanks to current clinical trials and the latest developments in immunotherapy, that will be cancer, not me. All I have to do is last long enough. All I have to do is outrun cancer.

Maybe I won’t. But I might. Besides, what else have I got to do?

36

It’s Because I Wore My Lucky Shirt

The shirt in question is navy blue. In plain white letters it says, ‘I’m making cancer my bitch.’ I wear it a lot. I always wear it to my blood tests, and I wear it to my appointments with the oncologist. So now, of course,  it’s my lucky shirt.

The level of cancer has fallen a little more. My blood tests are perfect. My very straightforward, down-to-earth oncologist was almost giddy.

So it’s official––I’m kicking cancer’s ragged manky ass.

I’m kicking it so hard, in fact, that I won’t be seeing my oncologist again till the end of February. The interval has been extended to every sixteen weeks. I can now buy green bananas for a month longer than I used to.

No, I’m not in remission. I still have cancer…but cancer doesn’t have me.

9

T Minus One Week and Counting…

Or to put it another way, only seven more shopping days till I visit the oncologist. There are no green bananas in the house. The junior cat, Castiel (named for a character in the Supernatural TV series, in case anyone’s wondering why I’ve misspelled Castile) has taken to spending more time with me. It’s probably because he knows I’m the source of the Dreamies that appear whenever he does something nice, like climb on my lap and get lovey-dovey. But hey, the little guy’s had a hard life; he does the best he can.

Last night, I dreamed it was my 66th birthday, specifically. But because I couldn’t remember what year it was, I had to do the math to find out and it took me several tries to get it right. And naturally, I didn’t know I was dreaming, despite the fact that all the usual signs were there: I had trouble doing simple things like making a phone call or basic math, I couldn’t find a usable loo, and I was walking around in public without most of my clothes. In the last few years, some or all of these elements show up in most of my dreams, as if my subconscious is deliberately signalling me so I can dream lucidly. But being me, I never get the hint. Instead, I find myself thinking, Oh, right, this is one of those times when it’s impossible to make a phone call or Dammit, I’m in another place where all the toilets are out of order, why does this keep happening to me?, or Why do I keep forgetting to get dressed before I go out?

Of course, a better question would be, Why don’t these things tell me I’m dreaming? So far, my subconscious has no idea and neither do I. But I do have a theory: it’s the hormones, of course. So far, they are to blame for night sweats, hot flashes, occasional nausea, the resurgence of my acne, disturbances in mood, and fatigue. Adding impaired reasoning during REM sleep to the list doesn’t seem like such a stretch.

Just before I went to Kansas City for the word science fiction convention in August, I noticed my face was starting to break out. I made sure I had an adequate supply of concealer and hoped it would pass. But no, it has escalated to where I had to ask our pharmacist’s advice. He agreed with me that it was almost certainly the progesterone and advised a suitable face-wash.

Then yesterday, the hormones decided they had been neglecting part of their side-effects repertoire and hit me with the fatigue hammer. I don’t think I was totally conscious until sometime after three in the afternoon. I actually dozed off a few times and was still ready to go to bed at night.

Half the battle of living with cancer is living with the side-effects of the meds you take for it.

Not that I’m really complaining. It has been my contention that the side effects are becoming more pronounced because there is less cancer to kill off. All the hormones left out of the gang-stomping of malignant cells have to do something. The acne is dismaying. My face clearing up was one of the best things about being an adult. Okay, maybe a lot of adults would say there are many, many more things much better than that but I suspect they didn’t have skin as bad as mine during their adolescence (I still cannot abide the smell of Clearasil, which I refused to use even at my most desperate).

Acne is one of the less common side-effects of progesterone, at least according to the package insert. However, as one of our previous gps was fond of saying, ‘The condition doesn’t always read the instructions on the box.’ Neither does the medication in the box.

I’ve noted before that the side effects don’t double up on me, so I never have to have a hot flash and an anxiety attack at the same time. But acne belongs to a different set of side effects, a much rarer group, so unfortunately, I can have a hot flash while my face breaks out. Or while I’m fighting to stay awake. That’s how it works for me, anyway.

Today, the fatigue has lessened, possibly because having Castiel parked on my lap is such a novelty it’s keeping me more alert than I would be otherwise. He came for the treats and stayed for the comfy pillow and the playlist on the iPad (his eyes are closed and his front paws are tucked). But the fatigue isn’t completely gone––I can feel it lingering somewhere behind my eyes, like it’s looking for an opening.

All I can do is try to get as much writing done as possible, and not get my h9pes up. And not buy green bananas for another week.

11

More About How I Kept Busy This Summer

In mid-August I went to Kansas City to be Toastmaster (or Toastmaestrix) for the world science fiction convention. I was busy every moment, even when I wasn’t actually busy. No anxiety attacks––adrenaline over-rides that sort of thing. However, while I was MCing the Hugo ceremony, the hot lights onstage inspired an extended hot flash of proportions I feel justified in calling ‘epic.’ Fortunately, I decided to make MCing a double act with writer Jan Siegel. I’m always better onstage with someone to play off but I also knew that if I became incapacitated for some reason (or just dropped dead), Jan would make sure the show would go on. Early in the proceedings, she could see the sweat coming through the back of my dress and took to fanning me. Good thing, as I might have dropped from heat stroke.

But I didn’t, and we got through the ceremony in record time (for this century, anyway). The convention finished the next day and I melted into a limp pool of vegetable matter.

(If the previous two paragraphs don’t make sense to you, you can, as I mentioned in the previous post, Google ‘MidAmeriConII’. However, no esoteric knowledge is required to understand what follows.)

The inbound trip was a comedy of errors––and by comedy, I mean like the slapstick of I Love Lucy. When you fly into the US from outside the country, you have to collect your luggage at your first stop, whether that’s your final destination or not, and go through US customs with it. Then, if you’re going on to somewhere else, you re-check your bags and hope there’s enough time left to make your connection.

I was connecting to my Kansas City flight in Chicago and, because I can’t stand or walk for very long, I had wheelchair assistance. Protip: if you ever use wheelchair assistance when traveling by air, tip the attendant as soon as you sit down in the chair and be as generous as you can. Had I not done this, I don’t know where some of my bras would be now.

My inbound trip was on United Airlines and I regret not asking the convention committee to find an alternative carrier. The best thing you can say about TransAtlantic UA is that it’s uncomfortable––I’m 5 feet three inches tall and my knees were pressed up against the seat in front of me for the entire trip from London. I didn’t feel like paying over $100 to upgrade to an economy-class seat with a few more inches––which is to say, the kind of economy class seat provided at no extra charge by every other airline I have ever flown with, ever.

In the end, I was doubly glad I hadn’t given United any money. As my bag came dropped down from the conveyor belt to the baggage carousel, I saw to my horror that my suitcase was open and all my worldly goods and chattels were slowly spilling out. 

I’ll never forget the sight of my favourite bra sailing by on a strange rucksack, heading for who-knows-where. I began hollering ‘My clothes! MY CLOTHES!’ and struggling to get out of the wheelchair. In O’Hare Airport, however, there’s a rule that attendants fasten you into the wheelchair with a seatbelt. So there I was, flailing madly as more of my clothes poured out onto the baggage carousel.

I’ll leave you with that mental image for a few moments while I explain this was not the doing of the TSA. I have had the TSA open my bag and inspect the contents a few times in the past. They always leave a note that says something like, ‘We opened your bag and looked through everything, have a nice day.’ No, I don’t particularly care for that but I never lock my bag because if they’re going to look through it––and they are––I don’t want them destroying the bag to get into it.

No, this time, someone in the United Airlines baggage area decided to have an unofficial look at what I was packing. The bag had a double-zipper on the main compartment and Some United Employee (known hereafter as SUE) was apparently very impatient. SUE broke one zipper, then tore the other off the bag entirely. I mean, it was GONE. The only way to do that is by deliberate brute strength. This caused the zipper it to unmesh and set my wardrobe free. Rather than put the bag in one of those big bins I’ve seen airlines use for damaged luggage, or wrap it tightly in layers of plastic, SUE decided it would be a better idea just to put the bag back on the conveyor belt and let the chips––or bras––fall where they may.

If you get the idea that I hate United Airlines with an intense passion, you’re right. I will walk––I will swim––before I get on another United Airlines flight.

Well, I managed to free myself from the wheelchair so I could try to recapture my bra and other items of clothing. A polite Asian gentleman who had been on the same flight graciously caught some of them and brought them to me, his compassion over-riding his preference not to touch a strange woman’s unmentionables. Meanwhile, my wheelchair attendant had hauled my bag off the carousel and was stuffing everything that had come out of it back inside like a mad chef trying to speed-stuff a turkey in under five seconds. I would have wept for the state of my evening wear if I hadn’t been so glad that it was still in my possession.

I’ll also mention here that the bag has six pockets, also closed by zippers, and not one of them has ever broken. They are also water-proof. If––or rather, when something liquid leaks, it doesn’t go through to the main compartment with my clothes. Ever. It doesn’t go through to the outside, either. You can’t tell anything leaked until you open the pocket and stick your hand in it (yeah, ew, but I have a feeling it’s discouraged more than one would-be luggage-pocket-picker).

‘What do I do?’ I asked the wheelchair attendant.

‘We’ll go to United and talk to them,’ he said, and off we went.

At this point, it was about 9:30 pm. Do you know what you can do in an airport at 9:30 pm? Not a frickin’ thing. The complaints department had gone home three and a half hours earlier. The night shift were already tired. United’s offices were closed but one of the ground staff found a giant plastic bag that I could put my entire suitcase plus mashed contents in.

‘Is there some way to seal it?’ I asked.

‘I’ll tie a knot in the top,’ he assured me. ‘Don’t worry, I won’t leave it open.’

The flight from Chicago to KC was brief and the plane was small. All I could do was hope neither my luggage nor the contents could get into much trouble.

I got lucky. The United ground employee had tied a knot in the top of my Bag-O-Remains as he’d promised. It was still tied but now there were several holes torn in the plastic. Fortunately, none was large enough to let anything escape.

And while I did appreciate the considerate treatment I got from the flight stewards on that leg of the trip, it did nothing to lessen my utter and complete loathing for United Airlines, their shabby aircraft, their twisted idea of passenger comfort, and their utter stinginess in the area of entertainment and refreshments. Plus, if you actually did want to pay for a drink or a snack(!), they don’t take anything except a credit/debit card. That’s right––cash is no good on a UA flight. United Airlines is beneath contempt. But I digress.

The poor MAC2 committee people who’d been delegated to pick me up and had to wait until after midnight for my arrival. I got in something like five hours later than originally scheduled.

Two days later, Jan Siegel managed to completely outdo me. She had to sleep in a Washington, DC airport after her connecting flight was cancelled altogether. Other connecting flights were not, just hers. Do I really have to tell you she was on United?

United Airlines: if you want to know what their business class is like, fly economy class on Virgin Atlantic or Delta.

Anyway, I didn’t get into the hotel until sometime after 1 am. I took inventory––miraculously, all my clothing had been recovered but one of my Irregular Choice Miaow high-heeled boots seemed to be missing. It looked like I’d have to wear either sneakers or Doc Martins with my evening gown, which had somehow escaped being damaged or soiled. I called my husband and sobbed. 

After I hung up, I found the missing Miaow and passed out from sheer exhaustion.

This has never happened to me before. I’m actually a pretty easygoing traveller. I never yell at the ground staff. I don’t expect or demand to be as comfortable as I am on my sofa; I can sleep anywhere, even if I’m sitting up straight. Crying babies don’t bother me; I know why they’re crying and I’m sympathetic. I never yell at a flight attendant, not even that time when I found spiders in my sandwich––it was obviously a catering snafu, not her fault, and we made jokes about how I should have taken the vegetarian option. Anything I can do sitting down is usually okay with me. So if I feel cramped and uncomfortable, conditions are pretty frickin’ bad.

Within a day, I was telling this as a funny story. I hadn’t lost any clothing or other belongings and my policy is, all’s well that ends well. But that doesn’t mean I loathe United Airlines any less. United Airlines: your cattle-car in the sky. When they say ‘mash-up,’ they mean you. 

I’m not kidding about that. The flight attendants kept assuming the other people in my row were related to me. Friendly skies––maybe it really did look like I was sitting on the lap of the person next to me. Or vice versa.

Don’t ask about the food. Did you ever wonder where food goes after it dies? Good food goes to food heaven; the rest flies United. 

Did I mention I hate United Airlines so much, they’d have to pay me to fly First Class with them? And even then, I doubt they could afford me.

Seriously, now: who the hell puts a damaged suitcase on a conveyor belt without even trying to do something about it?

But I’ll say one thing for the whole experience: It kept me too busy to be nervous about anything, including my role as Toastmaster for the convention. I think it also used up all my disaster potential, as nothing in my personal sphere of influence went utterly and completely wrong. Any time I ran into something challenging, I’d take a deep breath and think: Hey, it could be worse––you could be chasing your underwear around a baggage carousel in Chicago with a wheelchair strapped to your ass.

Then a week later, I started my journey home to London––not, thank all of creation, on United, that unfunny parody of a real airline. But I have to rest up before telling you that story.