For The Last Six Days, There’s Been A Non-Stop Party In My Head

It’s so loud sometimes I’m surprised it doesn’t disturb the neighbours. I walk around with a silly grin on my face. It’s raining? Great! It’s cleared up and the sun’s out? Great! It’s raining again? Super! It’s cold? Super-duper! Can’t get any work done? Hey, tomorrow’s another day, you can get up early again––yay!

But today I think things are finally calming down. I can read for longer than half an hour; I got some writing done; my smile muscles aren’t cramping. I have resumed thinking about what I can do to improve or maintain or at least not make things worse in my corner of the world. I’m thinking about where the world science fiction convention will be after Helsinki in 2017. I even bought green bananas.

And, to my surprise, a new emotion has entered the mix. I thought I’d felt everything I was going to feel––denial, bargaining, anger, anxiety, confusion, anger, disorientation, anger, jealousy, envy, determination, anger, hope, anger, anger, delirious joy, contentment, more delirious joy, joyful hysteria, and all points in between.

But no, there’s a new player in the limbic arena and it’s one I hadn’t foreseen: embarrassment.

Yes, I am ecstatic, totally happy that I can tell people I am will be living with canceruntil further notice and not that I’m halfway through the rest of my life. ButI’m also embarrassed. Underneath all the party noise, there’s a little voice saying, So, all the people you told––now what do you say to them? ‘Oh, hay guise, remember when I told you I had terminal cancer? Well, it’s the funniest thing…’ 

Yes, I know this is silly. There is no good reason to be embarrassed because the drugs worked better than anyone anticipated. Until last week’s appointment, as far as I knew, I was a short-timer. The cancer is still there; it hasn’t gone away. But it’s so little and wimpy, it should be embarrassed to call itself a carcinoma. There are probably lymphomas laughing at it, tumours making fun of it. You call yourself a killer? Better get outa there before you get beat up by a white cell!

I’m sorry. I make jokes when I’m embarrassed. (Disclosure: I make jokes when I’m not embarrassed, too, so I guess my telling you that is non-information and thus pointless. But I digress.)

In other news, I went to the gym this morning. I’m now a gym hero laureate, as a new hero has been recognised in Ilford––a young, formerly morbidly obese man who achieved serious weight-loss. Oddly enough, his doctor gave him two years to live if he didn’t lose weight. Now he has, and besides having a much longer life expectancy, Kayes looked wonderful. I did send the easyGym people an email telling them my own good news. So far, they haven’t met me at the entrance to tell me I’m not a hero after all, so I guess they’re cool with it. Still wore my “I’m making cancer my bitch” shirt. That’s still true, and it’s something I do every day. Because taking off and nuking it from orbit just to be sure isn’t an option.

And finally, my hair is coming in curly. I wish it would stay that way.

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And The Delayed Reaction Goes On As The New Reality Continues To Sink In

Let me explain

Our friend Amanda, who lives in our upstairs bedroom part-time, used to have abysmal eyesight. I think the term for it was pathological myopia. She wasn’t legally blind but it was a near thing. I tried on her eyeglasses once and I thought my eyes were going to impode. She wore contacts most of the time and she had been coping with her poor eyesight for most of her life. Then one day, an eye specialist said, I can fix that for you, and he did. The effects were dramatic.

It took Amanda months to adjust to life with normal eyesight. Previously, she removed her contact lenses at bed-time as a way of “shutting off” the world so she could go to sleep. After the surgery, however, there was no shutting off the world––she had to learn how to wind down even though she could still see everything. The rest of the day was a big adjustment for her, too. The visual centre of her brain had never had so much stimulation––she could get positively hyper from all the visual information coming in. Sometimes listening to her marvel at what she could see and how it made her feel could get me choked up. She’d been able to see just fine with her contact lenses but somehow, it wasn’t the same thing as being able to see without them. I don’t think she takes it for granted to this day.

I think you see where I’m going with this.

Every day when I wake up, the first thing in my head is, I’m going to live. (This is usually because I’m still damp from hormone-induced night-sweats.) Eleven months ago, I was working out how I was going to tell my son that I’d be lucky to see New Year 2017. This year I got to tell him that he shouldn’t be surprised if I were still around for New Year 2030.

My first post about cancer here included  a fable about a prisoner who persuades the king who condemned him to death that he can teach his horse to sing   (you’ll have to scroll down a bit to find it).

Well, I got my year––let’s just round up from eleven months, for the sake of neatness––and it turns out that the horse has a musical streak. The noises coming out of him actually sound kinda melodic. The king thinks so, anyway, and he has apparently decided that’s reason enough to continue with the singing lessons past the original deadline. Besides, the horse is enjoying himself, so cutting off the lessons would punish the horse who is the innocent party in all this.

I was giggling madly while I wrote that; I still am.

There will probably be a few more of these OMG you guys I can’t believe I’m not going to die next year! dispatches from Cancerland––maybe more than a few, interspersed or interwoven with OMG you guys exercise is so great! and OMG you guys here are some more reasons to be cheerful!  Not to mention my favourite story to tell on Christmas Eve. You can read them or not; I won’t judge you.

But absent medical advances with viral cell therapy or a spontaneous, inexpicable event of the sort people often describe as a miracle, these dispatches will come from Cancerland. And that’s not a downer. Because although I’m permanently resident in Cancerland, cancer itself is––say it with me, loud and proud even if it’s not aloud––my bitch!

And The Delayed Reaction Sets In

The first thing I did this morning is check to see that yesterday had actually happened, and it hadn’t been a wish-fulfilment dream.

You may laugh. Really, it’s okay,  go ahead, I’ll wait. … Every night, I have long, complicated dreams––this is actually how I know my anti-depressant cocktail is working. I never know I’m dreaming. Everything that happens to me, whether I’m awake or asleep, seems equally absurd. Or equally plausible, depending on your point of view. I’ve tried to dream lucidly. The closest I came to it was dreaming that I had dreamed lucidly––I dreamed that I fell asleep, dreamed lucidly, then woke up and told everyone I had finally done it. Then I really woke up and I can’t tell you how disappointed I was.

I have finally accepted the fact that dreaming lucidly is not for me; I’m just not meta enough. My lot is to dream elaborately, vividly, and then to wake up and marvel about it.

I have had wish-fulfilment dreams. Before I actually won a Hugo, I dreamed about it several times over the years, and in one of the dreams, I really did say what I said onstage in 2013––i.e., “Bear with me, this is usually the part where I wake up.” I wasn’t kidding––that usually was the part where I woke up. When I quit smoking twenty-three years ago, I had dreams where I suddenly found myself smoking again. Not all the time, but frequently enough that, in the dreams, I would say, “This might be a dream. But just in case it isn’t––” and I’d put out the cigarette. Everyone around me would laugh and tell me what a comedian I was. Then I’d wake up and be relieved I hadn’t been smoking. Those dreams tapered off eventually, but every so often, I still have one. They’re not recurring dreams––I’ve never had recurring dreams, just recurring themes. Recurring dream-themes. My dreams have also started referencing each other, but that’s a topic for another time.

In any case, yesterday happened. Yesterday I made the transition from terminal to chronically ill. Actually, I probably did that last spring, when I came out of chemo with more of my cancer killed off than my doctors expected. But that was only physically. I didn’t actually grasp it, I didn’t consciously and deliberately accept it until yesterday.

It’s quite a shift in perspective and it’s going to take some getting used to. When I was diagnosed, I swore that I would look the reality of it in the face no matter what. And despite my trash-talking about putting my boot on cancer’s neck and making it my bitch, I didn’t give much thought to how I’d cope if things continued to get better instead of getting worse.

But then, who does when they’re preparing for a disaster? When you’re boarding up your windows in the face of an approaching hurricane or assuming the crash position while the plane descends with its landing gear jammed inside, you’re only thinking in terms of bad to worst––or maybe just worst. You’re not expecting Taylor Kitsch to suddenly pop up on the bridge of the battleship to tell you, “I’m gonna die, you’re gonna die, we’re all gonna die. But not today.” And then Rihanna turns the big gun on your cancer and says, “Mahalo, motherf––!” I love that movie. I’m sorry if that makes you think less of me but there it is. I’m shameless and proud of it. (Besides, it will probably  look like Apocalypse Now next to the movie adaptation of the Hungry Hungry Hippos game. Or Operation. But I digress.)

As many people, including myself, have noted here and elsewhere, life is the terminal condition we all share. But as I have also noted, here and elsewhere, life is a privilege; so is getting old, and getting as old as possible is the whole idea. We complain about getting old. After forty or forty-five, the warranty on our bodies runs out. Some of us enter heart-attack country, some of us start putting on weight, the world begins to look unfamiliar or you might even feel like it has turned on you instead of turning you on. At the very least, you can no longer safely ignore symptoms or irregularities the way you did in your twenties and thirties. You find hair growing where it shouldn’t be. Somebody calls you “Ma’am” and when you get home, you cry. You take your niece shopping and the clerks think you’re her grandparent.

When I was in my early forties, I heard someone laughing about how “that little old lady has a Nine Inch Nails bumpersticker on her car!” (Little bastard. Like his generation invented music?)

Getting old gives us plenty to bitch about. That can even be part of the fun of getting old. But take it from me: getting old is something you want to do, and if you’re already old, you want to get even older than that. Getting old is not code for getting cranky or getting set in your ways or becoming obsolete and useless.

Getting old means the same thing as staying alive. Trust me on this: I’m an expert.

Good News For The Holiday Season

The tumour markers in my blood have fallen again. Not as dramatically as last time—only a little—but they’re still falling. The hormones are doing their job.

The doctor I saw this morning told me that eventually the tumour marker readings level off, which may be why the decrease was so little this time. 

Still, in my head I keep bargaining. If I get to the gym at least four times a week; if I always eat healthy and lose weight; if I get enough sleep every night; if…if…if…then can I please not have incurable cancer?

And that’s what I’m going to call it for now—not terminal, but incurable.

I have habitually called it terminal. It’s not that I want to regress to denial about my situation. Despite my good blood readings today, I know there’s no guarantee they’ll stay that way.

But dammit, I’m not dying. Not right now, not in this moment. Therefore I’ve got no business saying I am.

There are lots of incurable but treatable conditions, from type 1 diabetes to Parkinson’s. People live with them. I’ll be living with mine till further notice.

(Hear that, cancer? You are most definitely my bitch.)

Nine Weeks and Counting

My next appointment with the oncologist is a week from today. The suspense is, you should pardon the expression, killing me. News from the previous exam was astonishingly, maybe impossibly good. I’m afraid it can’t get better; I’m also afraid it can.

I’m about halfway through my oncologist’s original two-year projection and I’m running far behind where I wanted to be. I try to keep myself focussed on what I want to accomplish, breaking it down into a series of tasks rather than tryng to swallow the big picture whole, as it were. But it’s harder to screen out the distractions these days. Of course, the distractions aren’t what they used to be.

At this point, I’m down to taking things in hourly increments. One hour at a time, one word after another; lean back to see what I’ve got. It’s not the quickest way to get anything done but forward motion at any speed is better than no forward motion at all.

Although at this rate, it’s going to take a hundred years to get through the next seven days.

The Anger Thing

I’ve said it before, more than once: cancer patients are angry. Even when they feel good, even when the news is good, they’re angry.

When I was still having chemo, I was more aware of it because I wasn’t dissipating the energy with vigorous physical activity. When I could finally join easyGym, I was glad that I could finally pound it out, pedal it off, lift it or press it or push it away from myself 14 kg or 20kg or 50 kg at a time. Mostly that works really well, also paying off in endorphins and endocannibinoids.

Afterwards, freshly showered and dressed in clean, non-sweaty clothes, I stride a block to the bus stop with my gym bag slung over my shoulder and I never hear a peep from my back. I get on the bus and sometimes, I give up my seat to someone who looks more tired or debilitated, or to a mother with a stroller and half a dozen bags, so she can sit while she talks reassuringly to her baby who may be getting a fussy about being in a moving vehicle filled with strange people and voices and noises and smells. 

Then it’s a block and a half from where I get off to our house and I just walk it. I don’t have to think about it, although I do. It’s still a thrill to walk blocks at a time without having to worry about finding a place to sit/perch/lean because my lower back is screaming I’ll kill you, I’ll kill your whole family! It’s a dream come true and that’s not an exaggeration.

What, me angry? Well, yeah.

I’ve always had to deal with anger, and not just my own. Old Eternal (my late mother, formerly known as Old Unkillable) was an emotional person. We laughed a lot but she also cried easily and yelled even more easily, and it was hard to know what would set her off. In her later years, she was firmly convinced that venting was good for her. It probably was but it was hell for the rest of us. Once she had reduced everything to scorched earth and rubble, she felt better but everyone else caught in the blast area had lost the will to live. Which she couldn’t understand––she’d been the one who had felt bad, now she felt better, what did we have to complain about?

It made me a firm believer in the value of distraction and forgetting. Bad day? Tomorrow will be different, don’t dwell on it, forget it. Failure? Tomorrow you can fail better, don’t dwell on it, forget it. Somebody’s wrong on the internet? Be glad it’s not you, don’t dwell on it, forget it. 

Cancer? You might as well get mad at the weather. Don’t dwell on it––well, try not to, not any more than you absolutely have to. But forget it? The best I’ve been able to do is not wearing a funny cancer shirt every day. (I’ve gotten most of mine from Cafe Press but there is actually a place called http://www.funnycancershirts.com and their humour takes no porisoners.)

That’s actually been a big step for me, not wearing a funny cancer t-shirt every single day. They were like security blankets or good luck charms––in your face, cancer, screw you, you’re my bitch, my boot’s on your neck. When I looked in the mirror, I read it backwards and knew I was covered on both sides of the looking glass.

I didn’t think funny cancer shirts had anything to do with anger but they do. Whenever I’m out in my Secretly Hoping Chemo Will Give Me Super-Powers, I get smiles, laughs, even compliments from people who know the geography of Cancerland. And maybe a little discomfort from those who don’t.

But I’m not angry at them. I’m not angry at anybody or anything. I don’t want to make anyone uncomfortable. But I’m angry. On the bus, I’ll give up my seat to a tired, over-burdened mother or an older person and smile as I do it. But don’t play sidewalk chicken with me because I will walk straight through your face.

Well, no, not really. But I probably look like I might, or like I want to. Part of it is my standard woman-walking-by-herself expression but part of it is anger. It’s like static you can’t get rid of no matter how good the connection is, or a hum from the mains or the amplifier––you can’t hear it under the music but the music isn’t always playing.

It’s not just sidewalk chicken with strangers. I’ve apologised to more than one friend since I started chemo last January. 

My version of chemo-brain has been more in the area of anger-management, and the side effects from the progesterone don’t help. What this means is not that I should get a free pass because chemo-brain and side-effects. It means I have to be careful and think twice. Not other people––me. Because if I am competent enough to understand the problem, I am competent enough to take responsibility for it. Which also means I’m competent enough to do what I can to avoid getting into trouble. And if I do get into trouble, I’m competent enough to apologise.

Prior to the Diagnosis of Doom, I went years, even decades, without owing anyone outside my immediate family a serious apology. In sixty-mumble years, I have fallen out with very, very few friends. There are people I’ve lost touch with but only because life, not because we fell out. 

After the Diagnosis of Doom, I started getting my affairs in order; I also resolved to leave no bad feeling behind if it’s in my power to prevent it. I don’t mean I think I can  please everybody. I’m sure there are people who simply don’t like me but that’s true of everybody and that’s not my problem––”Bite me” is a legitimate answer to certain complaints and observations.

(Just to be clear, it also doesn’t mean I’m not angry about racism, sexism, ageism, cruelty, climate change, famine, war, budget cuts for the poor, tax breaks for the rich, smug Tories and the Religious Right who have the gall to call themselves conservatives. I’d consider it an honour if the latter two couldn’t wait to see me go. The only thing better would be if the Westboro Baptist Church picketed my funeral but I doubt they’d come to London just to curse me. But I digress.)

Anyway, I’m not proud of the fact that I’ve had to apologise to friends––good people––for the sharp edge of my tongue. It’s humbling, to say the least. It’s also a relief to know the people in my life are capable of forgiveness. As my Aunt Loretta (one of my three moms) told me many, many years ago, all apologies are mandatory but all forgiveness is optional––i.e., just because you apologised doesn’t mean you’re entitled to be forgiven. There’s a big difference between I want to say I’m sorry I hurt you and Hey, I said I was sorry, now let’s forget it. The former is the A answer; the latter is adding insult to injury. Forgiveness is part of the healing process for the injured party, not a get-out-of-jail-free card for the one who hurt them.

Of all the dispatches I’ve made from Cancerland, this one has been the most uncomfortable. Revving myself up to make cancer my b!tch, finding things to be happy about, talking about exercise, giving the history of my hair in photos, posting pictures of myself pole-dancing with my IV tree during Chemo Dance Party, telling stories, talking about physical problems or even my feelings about mortality––those are easier subjects. 

But this is a blog about the cancer experience and anger is part of that. Even so, just saying Cancer patients are angry states the fact without any of the attendant mess––it’s so clean, it’s practically antiseptic. You picture someone sulking because they’re in a bad mood, not blowing up in what should have been a rational discussion or biting the hand that comforts.

While I would love to guarantee that I’ll never screw up again ever, ever, ever, I know there are no guarantees in this life, least of all from me. I can only promise to be mindful, and that my intentions are good.

Now, I know some people out there are thinking, The road to hell is paved with good intentions. Protip: the road to heaven isn’t paved with bad intentions. All roads are paved with good intentions––it’s up to each one of us to watch where we’re going.

Even those of us in Cancerland.