When I Have Fears That I May Cease To Be…

Sometimes a really difficult Sudoku puzzle keeps that devil right down in the hole.

Hey, occasionally it is that simple.

(Tomorrow, Belfast.)

Where Did The Summer Go? Now With Added Intimations of Immortality, and John Keats!

When I have fears that I may cease to be
Before my pen has gleaned my teeming brain,
Before high-pilèd books, in charactery,
Hold like rich garners the full ripened grain;
When I behold, upon the night’s starred face,
Huge cloudy symbols of a high romance,
And think that I may never live to trace
Their shadows with the magic hand of chance;
And when I feel, fair creature of an hour,
That I shall never look upon thee more,
Never have relish in the faery power
Of unreflecting love—then on the shore
Of the wide world I stand alone, and think
Till love and fame to nothingness do sink.

Just sayin’…

TL,DR: Sometimes You Have To Recover From The Shock Of Good News. Details Follow.

The first cancer scare I ever had was in 1999.

I’d had a mammogram and they’d found a hot spot. The nurse came at me with a needle. I clung to the ceiling and refused to come down and they decided to do a lumpectomy instead. It was day-surgery––i.e., I went home not long after I woke up from the anaesthetic.

During the time we had to wait for the results, I made a lot of jokes to Chris about how I was going to spend all our money on flamboyant wigs––this was during my flamboyant hair-extensions phase, when I swanned around town sporting monofibre down to my lower back. I would turn our study into a temperature-controlled wig closet, I said. And of course, I would need lots of new clothes to go with them. I would free my inner drag queen and let her take over. 

Then I got the all-clear and I fell apart. I was limp for days. 

Eventually I pulled myself together. I figured that was a little nudge from the universe to remind me I wasn’t invulnerable. I’d only told a few people and only after it was all over, so I pretty much forgot about it.

But the part I never forgot was how the good news––no malignancy––had undone me completely. I’d had no idea how much I’d braced myself to hear bad news. I had assumed the crash position and the plane had landed safely, normally, unremarkably. None of the other passengers were aware it could have happened any other way.

When Chris and I headed for the Macmillan Cancer Centre yesterday, we had no idea what we were going to hear. My tumour markers had already fallen dramatically, although there had been a very slight rise at the previous appointment. I’d decided to stay focussed on the things that felt good––exercise, eating fresh fruit, writing, walking without back pain. Chris helped me with everything, taking me to the gym, cutting up apples for me, making sure I could work undisturbed. He projects such an air of upbeat calm, even I don’t realise how much stress he’s under.

After we came home yesterday, he dropped onto the bed and slept for four hours straight while I danced on the couch, stared at the Gent, did a little work, and I’m not really sure what else.

Today Chris is still pretty done in. I took spoon inventory and discovered that, as I’ll be going out tonight, I didn’t have enough for the gym. That was disappointing––I’d pictured myself revving the recumbent bike to a new personal best in rpms before brandishing twice my bodyweight in the weight room. And all without a headscarf or a cap!

Well, you work with what you’ve got. Tonight I’m getting dressed up and taking my hair to a party. The gym will still be there tomorrow when I swan in with my pixie-ish good looks, even if I won’t be intimidating any of the bodybuilders with my strength. 

That’s okay, they all seem to be good guys, and very tolerant of the little old lady working a wimpy little-old-lady pyramid, straining to complete 8 reps with 3 kilo free weights. Although the “Secretly Hoping Chemo Will Give Me Super-Powers” t-shirt probably helps.

(Now aren’t you glad you didn’t read only the tl;dr and skip the rest? You’d have missed the parts about my hair and the bodybuilders.)

I Didn’t Get The Miracle But I Got The Next Best Thing

The tumour markers in my blood have decreased to nearly half of what they were at my last appointment. The hormones are working.

The doctor I saw, one of those on my oncologist’s team, told me that they don’t know how long the hormones will continue to work but, of course, this bodes very well for me. I’ll come back in ten weeks, have another blood test, and we’ll go from there. So my life is measured out not in coffee spoons but in ten-week increments.

Good enough. I’ll take it.

As Chris and I were leaving, we ran into the oncologist herself, who was all smiles, too. She had seen my results, she said, and she was very pleased. But, she added, she was even more pleased to see me looking so well. I look great, she told me, and that’s as important as anything else.

Also good enough; I’ll take that, too.

My Birthday Wasn’t All About Cancer

Even though it started with a blood test at the Macmillan Centre, my birthday was all about Chris, and sushi and sake. It was all about my weight-loss making more clothes fit better. It was all about walking all over central London without worrying about having to find a place to sit. Well, until after I drank most of a small(-ish) bottle of sake. My back became a bit less tractable for a while but it had shaped up pretty well after the bus ride home.

We visited my stylist Daniel at the Covent Garden Salon to show him my new re-growth. I’m not ready to show the world yet, although Daniel agreed with more than one of my friends that I could go hatless or scarfless. But my new curls––yes, it’s coming in kinda curly to start with––just aren’t quite there yet for me, not enough that I want to show them off. 

But I want to show off my walking. I want to get back on my recumbent exercise bike with my music and pedal madly while my imagination runs wild, feel my heart pound. Feel good.

As I said however many entries ago, when I feel good, I know better than to waste time feeling bad. I guess what cancer taught me is how much more often I can let myself feel good––and how to choose feeling good over the alternative.

Okay, so maybe my birthday, like every day, is at least a little about cancer. Well, what the hell––you work with the tools you’ve got.

Nothing and Everything: The Different Textures of Terminal

When most people think of a terminal cancer patient, they think of the end-stage, when the person is bed-ridden and so heavily medicated, they’re barely aware of where they are. I’m about as far from that as most healthy people so it may seem strange for me to refer to myself as terminal. After all, where there’s life, there’s hope, yes? It ain’t over till it’s over, right? Sure.

If I wake up tomorrow morning to news that they’ve found the cure for recurrent uterine cancer, I will no longer be terminal. Recent work involving the use of viral cells to carry targeted medication directly to cancer cells to eradicate them shows a lot of promise, so much so that this may well prove to be the treatment all cancer patients have been waiting for. But so far, we’re all still waiting.

Meanwhile, I’m taking progesterone, which as I’ve said may be able to hold the cancer at a low level and prevent it from growing and spreading. This coming week, I’ll have a blood test; the following week, I’ll meet with my oncologist or a member of her team to get the results and find out how well that’s working. Her team members have said they’re hopeful about progesterone holding off the cancer for years; they’re all younger doctors. My oncologist doesn’t talk hope; she talks in terms of what results she has in front of her. Hope is my department.

I suppose calling myself terminal doesn’t sound like I have much hope but in fact I do. I hope to live longer than my oncologist’s original estimate, despite knowing that her estimate is based on however many patients she has seen. The long-shot is that I live long enough to see the viral-cell treatment succeed and be among the first to experience an actual cure. But those really are long odds, on the order of being struck by lightning, winning the lottery, or getting a personal phone call from Steven Spielberg begging me to accept two million GBP in option money for “The Girl-Thing Who Went Out For Sushi.” (I can dream; as Blondie pointed out, dreaming is free.)

Until there is an actual cure, all the treatment I receive is palliative. Palliative treatment is not curative treatment. Palliative treatment is meant strictly to alleviate symptoms and relieve pain, resulting in improved quality of life.

But if life itself is the terminal condition we all have, I’m not actually doing anything out of the ordinary. As I said when I started this blog, if mortality is certain, then putting off the inevitable is not only business as usual for us, it’s also the whole point. So in the larger sense, nothing has really changed for me.

Nothing…and everything.

I’ve Been Travelling, or On and Off The Road With Cancer

I didn’t plan to travel as much as I did this year, it just happened that way. And I’m not done yet. I have at least one trip, possibly two left before I put the suitcase away till next year.

It’s been very good for me, physically as well as mentally. In May, I visited Copenhagen for the first time. In June, I took a road-trip from Virginia to a college reunion in Massachusetts. In July, I spent most of a week at a festival in Spain. And in mid-August, I went to Spokane, WA for Sasquan, the world sf convention. The difference in my physical condition now compared to the same time last year is virtually miraculous. I could walk reasonable distances without collapsing. On Saturday night, I went to the Hugo Losers Party––the one given by original co-founder George RR Martin––and didn’t go to bed till four a.m. Then I was up at 9-ish to meet a friend for breakfast.

Last year at this time, I was pretty feeble. This year, I’m hopping around like an ingenue. I appear to be well, so much so that you’d never guess I had terminal cancer. A lot of people didn’t know––they thought I was in remission. It was no fun to correct them. I hated making them feel bad. Seriously; I remember what it was like to be in their shoes. I have a lot more experience being them than being terminal.

I’ve been saying that more often in the last few weeks: terminal cancer; I’m terminal; treatment is palliative. There’s about a year and four months left of my oncologist’s original two-year estimate. Where did the time go? 

Suddenly it’s September. My autumn allergies have kicked in with gusto. I haven’t made as much progress on the sushi novel as I planned (that sound you hear is God, laughing her head off). Just reading a book seems to take twice as much effort to concentrate as it used to. Even my character leaves something to be desired––despite my vow to cheer when good things happened to my fellow writers instead of giving in to jealousy, I got sniffy over someone else’s good fortune.

I’m probably going to have to die before that happens to me, I groused to my husband sulkily, then couldn’t resist adding: Oh, wait––good news! I’m going to!

And Chris, a man of intelligence, grace, and compassion, said, No, you aren’t.

Angry, jealous terminal cancer patient instantly undone by the eloquence of love.

I’ve made plenty of jokes about achieving success posthumously but none since the Diagnosis of Doom––I thought it would be too tacky. Now that I had, it was far more pathetically self-pitying than I could have imagined.

Self-pity is my instant time-out/take-a-moment/hit-the-brakes switch. I detest self-pity; it’s so easy to fall into and once you get some on you, it’s hell to scrub off. Self-pity is sneaky. One moment you’re consoling yourself after some kind of loss or defeat––could be major, like seeing a promotion or an award go to someone else––or something less consequential, like having a bad hair day and a fat day next to someone who’s just lost twenty pounds and is having their best hair day ever. (Why, God, why?) Then suddenly you’re telling yourself that of course you’re a failure––fat people with bad hair don’t get promotions or awards and you’re the reason you can’t have nice things. But you wouldn’t be that way if the world weren’t so cold and cruel to you while other people get not only everything they want but everything you want, etc., etc., etc.

(If you’re so virtuous you’ve never had an inner monolog like that, don’t even try to talk to me. Fuck off and d…don’t have fun.)

That shit isn’t me. I’m the woman who, absent a better offer, is going to teach a horse to sing in a year. I’m the woman crawling out onto the front step on her hands and knees to save her own life. I’m the woman who got so tipsy on chemo day, she pole-danced with her IV tree. I’m the woman who will tell you that everyone who woke up this morning won the lottery. I’m the woman who’s been defying the odds all her life and sees no reason to stop now. 

I’m the woman who believes we were all put on this Earth to accomplish a certain number of things and is now so far behind that she can never die (that one always makes me laugh).

Then the sun gets low and the shadows stretch. My energy starts to flag and no matter how good the day has been, I’m tired. Eventually my mind turns to finding my location on my various axes––x, y, and z, but mostly t, for time.

I feel good; I feel strong. I feel no more mortal than I felt before I took up residence in Cancerland. Everybody, every single one of us, we proceed on the basis that, all evidence to the contrary, we will live forever, and I’m no different. Hell, I’ve actually been dead and I still can’t imagine not being alive.

Maybe my thinking about how much is left of the two years my oncologist gave me is a sort of mindfulness. Sure, it’s great to be optimistic, to go all in––and all out––to defy the odds. But even optimists are subject to natural laws. Once in a while, you get a miracle but miracles are scarce, not something you can, or should, count on. 

You can work with the idea that anything is possible, and it’s probably true, more often that not. Anything…but not everything. I know, I’ve said that before; I’m old and I repeat myself––

Actually, that’s probably it––I’m about to get older. My birthday is coming up on 10 September; I’ll be sixty-mumble (I’m in my early sixty-mumbles). No, I don’t feel bad about being this old. To be honest, I’m glad I’m not younger––even at forty, I’d have been devastated at losing my hair and even more devastated by a hysterectomy. Instead, I went through a phase of ostentatious hair extensions and left my child-bearing years on Nature’s timetable. I know some breast cancer patients fifteen to twenty years younger than I am who aren’t so lucky. Fortunately they aren’t terminal––migod, how horribly unfair would that be?

Even if you’re healthy, when you enter your sixty-mumbles you start thinking about how many good years you’ve got left. You think about what you’d still like to do as well as what you never want to do again. As a writer, I think about the stories I have yet to tell and how to get better at telling them. I don’t think about stopping; I’m not going to stop. I’ll have to be stopped. Until I am, I’ll proceed on the basis…well, you know.

And now looking down the next eight days to my birthday, I feel a renewal of that strong, good, making-cancer-my-bitch feeling. Terminal? Feh. So what if I am? I can still make cancer my bitch.

Now I think of Rosemarie, my best friend from childhood. We ruled the solar system, partied with the Beatles, and saved the Earth at least once a week. Rose died of cancer in 2001. I remember what her brother Joe told me: she said it wouldn’t beat her. It might kill her but it wouldn’t beat her. She made cancer her bitch. So can I. 

I guess that’s why I’m terminal. It can’t beat me so it’s got to kill me. But it won’t be easy…and it will still be my bitch.