Still Making Cancer My B!tch

The level of cancer fell just a little bit more according to my oncologist but the celebration is somewhat subdued. I lost two friends this week, within days of each other. Yes, cancer. Worse, neither had cancer when I was diagnosed. One has been very ill for the last couple of years, the other had just turned 50. Neither was supposed to be terminal.

And that’s how it happens sometimes. You might get lucky; you might not. Living with incurable cancer, not in remission but stabilised for some indefinite period, might be as lucky as you’re gonna get. But that might be just lucky enough.

I’m not knocking it. Back when I got the Diagnosis of Doom, I decided I was going to make the best of the time I had left. Making the best of things is an old family tradition; Old Eternal (my late mother, for those who may be new) used to be an expert at it. Now here I am with what looks like a lot more time than my oncologist expected. As I’ve said many times before in this blog, I never actually believed on a gut level that I was going to check out in January 2017. 

At the same time, however, it’s a little spooky to think that, had my cancer followed its standard course––had I not gotten so extremely lucky––I wouldn’t be here now. And the two friends I lost were supposed to be living their lives as usual. John Lennon once pointed out that life is what happens while you’re making other plans. Truer words were never spoken.

A few days ago, I had started writing a post about survivor guilt. There have been a few posts I found very difficult and uncomfortable to write but this one was impossible. I have seldom written nonfiction; it’s really not my metier. I did write two nonfiction books in the late 1990s, one about the making of Lost In Space and another a year later about the making of The Mummy; they were assignments I lucked into and I think they turned out pretty well, if I do say so myself. But I digress.

Survivor guilt is one of those things easier felt than explained––easier done than said, if you will. You can’t write about it without sounding like you’re fishing for comfort: Please forgive me for still being alive. You know people are going to tell you that you have nothing to feel guilty about. Except for the few whom you secretly suspect don’t forgive you.

Personally, I’ve always thought of survivor guilt as something suffered by people who have been through terrible catastrophes––natural disasters, mass transit crashes, explosions, wars. These people have been through extreme trauma and injury themselves. So claiming I have survivor guilt sounds self-aggrandising. The truth is, I’ve never been in pain and thanks to my family and my ongoing support system of friends far and wide, I’ve never felt alone or like I had no one to talk to. 

What I’m feeling is more like survivor embarrassment. It’s like this: you find out you’re terminal, and you make a big deal out of it, because what the hell, it is a big deal, to you anyway. Then, holy guacamole! Things take a completely unexpected swerve and it turns out you’re not as terminal as they thought. You’re not exactly well, not in remission, but you’re stable and you’re not leaving any time soon unless someone drops a house on you. (And even then, it would probably depend on the house.)

Well, I’m not the only person this has ever happened to. One example I’ve mentioned before is Stephen Jay Gould, who was given eight months when he was diagnosed with cancer and died twenty years later of something else. I never knew Stephen Jay Gould but I doubt he spent much time being embarrassed. But then, Stephen Jay Gould was a wiser, busier, more learned person than I am, with a lot more to think about. Dammit, I really did want to be a theoretical physicist/mathematician. But I digress.

This, too, is life. Life is a messy, unruly, smelly, chaotic crap-shoot and all roads lead to entropy. And, old reprobate that I am, it’s my idea of a good time. Green bananas all round!

Five More Shopping Days To Buy Green Bananas, or Recovery Is Never A Straight Ascending Line

By Valentine’s Day, I’ll have finished a month and a half of borrowed time. So far, so good, although the hormonal fatigue has come down on me like a 10-ton bag of wet cement.

You’d think fatigue would just be fatigue––i.e., you’re just too tired, end of story. But you’d be wrong. I seem to have become an expert as to the many different kinds of Fatigue.

Not Enough Sleep Fatigue: at one time, I could fix that with a pot of coffee but sadly, I can’t. I overdid it and now my esophagous suffers from chronic coffee irritation. The discomfort was so bad I actually gave up coffee for green tea. Then I discovered my problem was only with real coffee, the kind made from ground coffee beans. Instant coffee didn’t produce heartburn bad enough to make me vomit. I now drink instant coffee. There was a time when I’d have called me a Philistine. So I’m a Philistine; I can live with that. I have a secret for making instant coffee taste a whole lot better than it normally does. Still drink green tea; there’s a kind flavoured with pomegranate that’s as close to divine as tea gets. This is actually different from

Poor Sleep Fatigue: believe it or not, the quality of this fatigue really is different from Not Enough Sleep Fatigue, at least for me. Normally, I sleep like the dead––global thermonuclear war wouldn’t wake me. I’ve always been a deep sleeper, which has been enhanced over the last years by my evening anti-depressant medications. I was taking the hormone pills at night because I figured I’d sleep through the side effects. But apparently even I can’t sleep through night sweats. I would wake several times a night, usually because, having sweated and kicked off the covers, I was freezing. Then I was a zombie for most of the following day. Hoping my sleep would improve, I started taking the hormone pill first thing in the morning. Now I spend the better part of each day with the fan on but I’m sleeping all the way through the night, which has made a big difference in how much I can brain every day.

Depression Fatigue: I struggled with this one for years without realising what it was. At the last, before I gave in and tried medication, it was so bad that I could fall asleep at a long traffic light. Occasionally I had to force myself to stay awake in mid-sentence––my own. Later on, it would re-emerge when my medication needed tweaking. Some days I would wake up and realise that staying conscious was going to be a constant physical effort, and I shouldn’t sit it any rooms that weren’t brightly lit, or hold still for longer than ten seconds. It took years before my shrink and I finally found the meds cocktail that allows me to get out of my own way. (Some people handle depression without medication, some need the drugs, and of those, some need more drugs than others. If you need treatment, get it, and go with whatever works for you. Everybody’s different; one size does not fit all.)

Menopausal Fatigue (Ladies Only): If Hormone Replacement Therapy is contra-indicated for you because of a family history of breast- or gynaecological cancers, you’re just going to have to tough it out. I hope you have the support of friends and family. There are herbal and non-pharma alternatives to HRT too. One of my gps told me that Japanese women have so much soya in their diet, most of them breeze through menopause almost without even noticing. You can try over-the-counter soya supplements, along with things like black cohosh and evening primrose oil capsules. Or just say Fuck it and take a nap. By the time we get to menopause, we’re entitled to a little extra rest.

Chemo Fatigue: Being poisoned will wear you out. Rest as much as you can during the worst of it. Different people are affected to different degrees. I know one person who didn’t do things much differently during chemo than he did normally.  Other people felt as if they’d been slammed by a cement truck. I felt like I’d been flattened by the anvil meant for Wiley Coyote. 

Weird Exhaustion That Comes Out Of Nowhere Seemingly For No Reason: It’s a symptom. Go to the doctor for tests.

Hormone Fatigue: Please don’t make me get dressed. Please don’t make me think about getting dressed, it wears me out. If I can do it sitting down, I’ll do it but really, don’t make me get dressed. I’m serious. I don’t have the energy to get up and take clean underwear out of the drawer. Yes, the cat is in there but that’s not the problem. He’ll let me take anything I want. I just can’t stand up and walk into the next room right now. I’m going to the loo later.  What day is it anyway? Already?

I Haven’t Written Enough Fatigue:  Well, I haven’t. I’m working so hard and yet I’m not where I should be. It’s making me tired. (I bet I’m not the only one so afflicted.)

I know, reading about fatigue is what you want to do to get your blood flowing and make you feel like running a marathon, especially in February.

Personally, after declaring back in late November that every day would be Party Day, I thought I’d have a lot more zip, especially after completing my first full month of Borrowed Time. But no, I still have trouble finding enough energy for…well, anything. The 25th anniversary of when I quit smoking came and went. And now here we are, five days from Valentine’s Day, which is my last day to buy green bananas; it’s also one week before I need to get my blood test, and two weeks to the day before I check in with my oncologist. Which is giving me The Suspense Is Killing Me Fatigue.

28 February will also mark two months of Borrowed Time, aka Party Time. I’m not so exhausted that each day isn’t a life-savour, as well as a gift. As the old saying goes, that’s why they call it the present. 

(What, too corny? I’d have said the same thing before I woke up in Cancerland.)

Actually, I want to stop calling it Borrowed Time and call it Reclaimed Time instead. Because really, it was mine to begin with. But I don’t feel quite steady enough on this shifting terrain to go that far. Yet.

It’s My Two-Year Chemo-versary!

That’s right––two years since I started chemo, with the thought that I might have about that much time left, possibly less, according to the oncologist. No, that never seemed real to me. But as I get farther away from it in time, it somehow seems to become clearer what the medical professionals were telling me. But here I still am, two years later. I’ve got the form of recurrent uterine cancer with the worst prognosis and I lucked out.

I think I was probably more eloquent last year, on my one-year chemo-versary, when I was still coming to grips with the fact that I wasn’t halfway through the rest of my life and I could expect to go on living for an indefinite period. Well, here’s the going-on-living part, the quotidian. It’s short on confetti and long on general chores and maintenance, which is pretty much the human condition for most of us, or at least most of the people who would be reading a blog like this.

Last year at this time, I was so…moved by the fact that I was going to live that it was a few weeks before I could think straight enough to get any work done. I think I was more affected by the news that I was going to live than I was by the news that I had terminal cancer. Even now––I mean, I’m getting things done but every so often I still have a sudden moment of clarity, of being surprised by joy.

It’s still in the back of my mind always that life turns on a dime, so sharply it could give you a nickel change (but never does). 2017 could be as good for me physically as 2016, or it could turn around and bite me. My oncologist, that wonderful, down-to-earth woman who makes no promises, has changed my check-ups from every three months to every four––definitely a good sign. 

Regardless, everything still happens one day at a time. That’s all anyone gets, and if it’s above ground, it’s a good day.

Hi, I’m Not Dead Yet––Hahahahaha, Suck It, Mortality!

I’ve been studying up on quantum physics for the book I’m writing. I mean the hard science quantum physics, not the woo-woo-harness-the-power-of-the-multiverse claptrap that inevitably shows up when you search for genuine physics. Anyway, if there’s one word you could use to sum up the universe––there isn’t, actually, but if there were––that word would be indeterminate. It seems many physicists of the last hundred years or so have had a lot of trouble getting their minds around indeterminacy. Which is something I can’t get my mind around. I mean, considering how life turns on a dime (and could give you a nickel change but never does), I’d have thought scientists would intuit life is probabilities of the possible and non-locality would go without saying. But that’s just me, I guess.

I grew up hoping for things, and working hard for what I wanted, but never counting on anything. I always had Plan B through N in my back pocket and outlines for Plan O through Z in my other back pocket (Q, X, and Z were hilarious).

But that’s the thing: circumstance can land you in a state where plans aren’t an option; they aren’t even real. You get what you get and the only options are how you react to it, how you’re going to work around it, and how your priorities shake out.

Which is the long way of saying, I’m glad to be alive but I can’t help being a little nervous. I have now exceeded the original estimate of the time I had left. I’m not in any way surprised as it’s been obvious for a year that I would. And I still can’t help being a little nervous because, as the kids say, sh!t just got real. I knew I was going to do this. I never believed I was going to do anything else. But it’s no longer something in the future; now it’s put up or shut up: You’re on, kid––careful you don’t trip on your super-hero cape as you make your entrance.

Every day is still going to be a party. Every day is Anything-Can-Happen Day until further notice. Of course, every day is Anything-Can-Happen Day for everyone, not just me. Indeterminacy Are Us. But certain probabilities are a little higher for me and it’s the sort of thing that I can’t help being aware of, sometimes more so than other times.

It’s not going to spoil the daily party. I’ve spent a good part of my life confounding the odds so this is nothing new. 2017 starts with my buying green bananas for a whole month longer than last year, which in terms of my personal probabilities bodes very well.

And I still can’t help being a little nervous. Maybe that’s as it should be. When you feel good, you shouldn’t waste time feeling bad. But being a little nervous can keep you mindful, and there’s nothing wrong with that.

Happy New Year.

It’s Christmas Eve and You Know What That Means––It’s Time For My Favourite Christmas Story!

This isn’t really a Christmas story, but I’ve always loved it. The first time I heard it, I was moved in a very profound way. Later that year, when Christmas came, it was the first thing that came to mind. I post it on my Facebook page every year and last year, I posted it here. And now I’m posting it here again.

One night, Confucius had a dream about chopsticks.

In the dream, he was transported to Hell, where he saw multitudes of people sitting at enormous tables set out with wonderful foods of all kinds. There was so much food that the tables groaned under the weight and the various aromas were mouth-watering, promising incredibly delectable flavours. But the people sitting at the tables had not touched any of it—they had been told they could eat as much as they liked but only if they ate with chopsticks that were five feet long. None of them could figure out how to eat with five-foot-long chopsticks so all they could do was stare hopelessly at this amazing feast and cry in hunger and misery.

Then Confucius was taken to heaven where he again saw multitudes of people sitting around enormous tables laden with glorious foods. They had also been told they were allowed to eat only if they used the five-foot-long chopsticks. But these people were not crying with hunger and frustration—they were eating their fill, talking, laughing, and enjoying themselves.

Because in heaven, they were feeding each other.

My friends, whatever holiday you celebrate, however you celebrate it, I hope it’s heavenly.

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.

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.

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?

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.