My appointment with the oncologist has been re-scheduled to 13 October.
I’m taking this to mean she doesn’t have any bad news to give me. That doesn’t make the suspense any less killing. I’ll just have to keep busy.
As you were.
My appointment with the oncologist has been re-scheduled to 13 October.
I’m taking this to mean she doesn’t have any bad news to give me. That doesn’t make the suspense any less killing. I’ll just have to keep busy.
As you were.
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.
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.
––until my next appointment with the oncologist. And although we’re still in the buying-green-bananas zone, I’m already nervous. Not anxious, nervous.
I’ve had plenty to distract me over the last month. In mid-August, I was Toastmaster––or Toastmaestrix––for the 74th world science fiction convention in Kansas City, a crazy little party called MidAmeriCon 2. The first MidAmeriCon occurred forty years ago and the Guests of Honour were Robert A. Heinlein (pro) and George Barr (fan), with Wilson ‘Bob’ Tucker as Toastmaster. I was the liaison between the Heinleins and the committee, and also the pretty girl in an evening gown who brought the envelopes out to Bob Tucker so he could announce the Hugo winners. I’d always hoped that Tucker would live long enough so he could be my pretty girl with the envelopes but after a lifetime of smoking, drinking, and chasing women, he died an early death at 92. But author Jan Siegel was perfect as my co-host and I’m sure that somewhere in the multiverse, Bob Tucker was smiling on us.
If you don’t know what I’m talking about, Google ‘MidAmeriConII’, ‘MAC2’, and/or ‘Hugo Awards ceremony 2016’, which may eventually lead you to a bunch of clips on YouTube, including this one from the end of the ceremony:
The silver fox on the left is yours truly; my lovely co-host is Jan Siegel, aka ‘the bimbo in the red dress’ or simply ‘KevinTheBimbo’, author of Prospero’s Children, The Sangreal Trilogy, and most recently, The Devil’s Apprentice. Yes, some guy actually called her a bimbo. Her response was to punch the air and cheer: ‘I’m sixty years old and someone called me a bimbo! I’ve still got it!’ (You’ll have to watch one of the other clips to understand why she’s ‘KevinTheBimbo.’)
It’s all good but it’s in my mind––last day to buy green bananas: 12 September.
Yeah, the story of the hormones never ends. For those who came in late, I’m taking progesterone because my cancer cells have receptors for it. As a result, progesterone reacts with the cancer cells by stifling the hell out of them and helping me live longer. But I don’t get that for free. Progesterone comes with side-effects. I.e., BANG! Menopause is back!
Well, actually, it isn’t––it’s just the symptoms. But hey, if I have to endure night sweats and hot flashes, it’s a small price to pay. And I so wish that was all, but it ain’t. There are also disturbances in mood, in particular, anxiety.
Antidepressants have kept me functioning smoothly for quite a few years now but sometimes even my rather unusual cocktail of meds is no match for progesterone-induced anxiety. I just have to ride it out, remember it’s a side-effect and it’s temporary, not a sign that my meds need tweaking.
Anyone who’s ever had an anxiety attack––which is practically everyone I know––will understand what a neat trick that is.
Anxiety doesn’t give a crap about what’s real. It doesn’t arise from rational thought. It has nothing to do with how intelligent you are, even if you’re actually as intelligent as you think you are, and it doesn’t matter how much you have to do, or want to do, or that people are relying on you. You could be the most well-adjusted, sane, non-neurotic person on the face of the earth but none of that matters when neurons in a certain section of your misfire. You know how sometimes people actually go to the emergency room thinking they’re having a heart attack, and it turns out to be an anxiety attack? It’s not because they’re silly people or hypochondriacs who think every time they hiccup they’re dying or because they need to stop being so neurotic. Anyone who has to endure chronic anxiety attacks is going to get a little neurotic, but being neurotic is not why they’re having anxiety attacks.
Personally, I haven’t been able to leave the house in over a week. No hot flashes, no night sweats, just can’t do anything, can’t go anywhere, can’t walk it off, can’t think straight, can’t punch my way out of this wet paper bag.
I thought that my blog entry on admitting to my problem with anger management was the hardest one I’d write. But surprise! Owning up to this is a lot more embarrassing. I’m not sure why. Maybe it’s because it’s so personal; maybe it’s not my idea of being strong and positive about living with cancer (as opposed to dying of it).
Well, things like anger and anxiety are part of living, too, cancer or no cancer, and while life itself is sweet and far more desirable than the alternative, it’s also messy and shambolic, inconsistent, unruly, ungraceful, and sometimes it even smells bad. It’s bad hair days and having to apologise when you screw up and some days not knowing what the fuck to do. Or what the fuck, period.
For my fellow travellers in Cancerland, for anyone fighting a chronic illness, for all the people who love and support them: even when you’re doing well, you won’t do well all the time––even when you think you ought to be doing well. Life is a messy proposition. Even when it’s good, it doesn’t always feel that way. Take the days however you can, whether you can go out and punch the world in the face or kiss it on the lips…or you can’t bring yourself to leave the house. If it’s the latter, well, it is what it is. There will be days like that.
And then there will be other days, when there are hot flashes and night sweats instead of anxiety. Because at least the damned side effects don’t double up on me––I don’t have to sweat and be anxious. It’s been over a week since my last hot flash and right now, I’m sweatin’ up a storm. It will be nice to get out of the house again.
I was reading about the Marvel Cinematic Universe yesterday with regards to Netflix. There’s a Punisher series coming, I guess, and one about a character who was in the Jessica Jones series as well, among others; I can’t remember them all. They were giving the projected release dates––sometime in 2017, sometime in 2019––and I suddenly caught my breath at the realisation that if something appears in 2019, which is two years after my initial expiration date, the chances are now very good that I’ll be around to see it.
There are no guarantees, of course. I might get through all of 2017 in great shape only to have my cancer wake up loaded for bear in 2018. Or I might be planning my 67th birthday party (a surprise party, of course) and fall under a bus. It’s always Anything-Can-Happen Thursday. (Actually, it’s always Anythiing-Can-Happen Thursday for everybody, even those of us who don’t live in my particular area of Cancerland, or any other Chronic-Life-Threatening-Illness-Land.)
However, when I started getting the good news that the level of cancer in my body was diminishing, I thought of what my mother, Old Eternal, told me during the Cuban Missile Crisis. (Scroll me if you’ve heard this one.) I was a little girl at the time and the possibility of nuclear war between the US and the USSR seemed very real, but never more so than right then and there. I was actually having nightmares. One night, after she’d read to me, she was tucking me in and I asked her if she thought war could really break out.
‘Not a chance,’ she said. ‘Take it from me, putschka, nothing’s gonna happen that’ll get either of us out of going to work or to school tomorrow or the next day or the day after that, or ever. Nobody’s gettin’ a day off, so you can fuggedaboudit.‘ (Her maiden name was Saponaro and at the time ours was a Mafia neighbourhood. We all used to talk like that, myself included, even when my mother and my aunt lapsed into Yiddish or Polish, as in putschka. Life’s rich multi-cultural pageant. But I digress.)
I thought about that when I first got the Diagnosis of Doom. Old Eternal had been gone for a little over two years by then but I could hear her like it was yesterday. I could even hear things she would have said: ‘Two years? Don’t count on it, putschka. They’ll be telling you the same thing ten years from now, and ten years after that, and probably ten years after that. Nobody’s gettin’ a day off so you can fuggedaboudit.‘
Of course, that was just my defence against the dark arts, so to speak. You do whatever you have to do and think whatever you have to think in order to keep putting one foot in front of the other rather than curling up under the bed in the foetal position. But I also wanted to face reality. I rearranged my priorities, got my affairs in order, got my mind in order, decided that if I had to live in Cancerland, it would be as much on my terms as cancer’s. And while I don’t think I ever really believed I was going to check out in late 2016/early 2017, I didn’t realise how much of the future I had abdicated from. I would read something about London Transport’s plans for 2020 and think, Well, that’s not my problem. Then, when things went right and the possibility of living years longer than my doctor had originally estimated became real, I had to consciously acknowledge that whatever London Transport or anyone else did in 2020 would be my problem.
As I’ve said elsewhere, Be careful how you talk to yourself, because you are listening.
Another good thing to remember: things aren’t done blindsiding you.
I.e., I was pretty sure I was done with all the feels about my extended lifespan: Yeah, I’m gonna live longer than they thought, hooray! Mom was right, nobody’s getting a day off and hey, that’s a good thing! The good die young but the lucky get old. And in the immortal words of the immortal Warren Zevon: I’m too old to die young and too young to die now.
Yeah, I really did think all those feels about having more life ahead of me were settled, old business, case closed, now back to writing the sushi novel and the ‘Truth and Bone’ novel and who knows, maybe Doré Konstantin will get her last hurrah after all. And all of it contained within my 12-week schedule for buying green bananas (not after the end of week 10).
But apparently I’m not done with feels. Today I was, in the words of (I think) Gerard Manly Hopkins, surprised by joy. Not euphoria or ecstasy, more of a quiet bliss arising from the fact of my existence and of having given it purpose myself, and the satisfaction that comes from figuring out what to do and how best to do it.
And that no matter what I’m facing, all I really have to do is get through today.
Yeah, there’s living with cancer and there’s living with the treatment. Most of the time I can do both at once. But every so often, the hormones run through their repertoire and have to find something new. Night sweats? So last week. Hot flashes? Been there, done that. Anxiety/mood disruption? Bitch, please. Fatigue? How tiresome. Oh, wait––stomach upsets! We haven’t had that one in a while.
But, hey, at least it’s not a stroke or a heart attack.
I tell myself that there’s so little cancer left for the hormones to kick around that they have to find other things to do. So here I am.
Believe me, it’s not that I’m not happy the hormones are working such a treat. Cancer-Stompers R Us, go team! Side-effects included as standard, no extra charge.
Living with cancer. It’s not always dramatic. In fact, most of the time it’s just a pain in the arse. Given where I was last year at this time, you’d think I’d have a higher threshold for that sort of thing. Okay, I’d have thought. But there you go. Life is the terminal condition we all share, and the human condition is included as standard, no extra charge. Just in case there are side-effects, I guess.