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.
Which is to say, I still have cancer, and unless something miraculous happens, I will always have cancer. Recurrent endometrial cancer (aka recurrent uterine cancer) is inoperable, incurable, and terminal. There are something like four different forms (I think it’s four) and I have the one with the worst prognosis.
However, it is treatable. My cancer cells have progesterone receptors, which means that doses of progesterone can keep it stabilised at a low level. For how long? Impossible to say. Could be months. Could be a few years. Could be more than a few years. Nobody knows…just like someone without cancer. Technically, I’m still terminal but now the more accurate term would be incurable. My own preference is incorrigible.
I like to think that the longer I live, the longer I’m likely to live but that’s not really true with recurrent endometrial cancer. That’s recurrent endometrial cancer, not a one-time occurrence as most cases of endometrial cancer are. My oncologist made it clear: this can turn around and bite me at any time. If I continue to lose weight (yes, I still need to lose weight) and maintain healthy eating and exercise habits, I’ll increase my chances of living longer. But there are no guarantees either way. There’s no five-year anniversary for me because I’m not in remission. Being in remission would be a miracle.
Correction: being in remission would be a bigger miracle than the one I’m living right now. It is at least slightly miraculous, in my opinion, that I am not looking at the last six months of my life after all; that I am not in pain; that my cancer has decreased to such a minuscule level that my straight-shooter, down-to-earth oncologist who couldn’t crack even a faint smile when we first met now beams at me every time I see her.
Some days, I actually forget I have cancer. Being a cancer patient isn’t all that I am but it’s something I’m always going to be. I live twelve weeks at a time; I make plans only within each twelve week period. I don’t think any farther ahead than that and on week eleven, I don’t even buy green bananas.
That’s okay. Could be worse. Eventually, it will be. But it isn’t today and today is all I have to worry about.
My oncologist was smiling broadly even before she called my name.
The level of cancer in my body has fallen again, this time very slightly. The rest of my tests are perfect. Unquote; she said perfect. She also likes my I’m Making Cancer My B!tch t-shirt. I am killing this cancer thing.
I was so friggin’ tense before this latest appointment that all I’ve been able to do for the last day and a half is sit and stare. Don’t ask me what I was staring at; I don’t remember.
The year’s half over. I imagine I’ll be just as tense about the next appointment but that’s in September. In fact, I’ll probably get more nervous as we get closer to the end of the year. But all I have to do is get through the next twelve weeks.
––till my next appointment with my oncologist.
The nervousness always starts in the last two weeks before The Day. I double-check my calendar to make sure I’ve set a date to go for the blood-test, and that it’s far enough in advance so the results will be available on the day of my appointment. Then I triple-check that I’ve set a calendar alarm for both the blood-test and the oncologist appointment because if I don’t, there’s a good chance I’ll get the dates mixed up. That’s the morning sorted.
In the afternoon, I do the whole thing again, just to make sure.
And then the next day: check, rinse, repeat.
It sounds kinda OCD and I suppose it is, whether I want to admit it or not. I don’t; I don’t think of myself that way but really, we all are, some more so than others. Old Eternal (aka my late mother) lived by routine. As a single mother working full-time and raising a kid, routine and organisation were her greatest weapons against chaos and danger.
My mother always coloured within the lines because that was how she could fulfil her obligations and responsibilities. But she had one funny thing: whenever we left the house, she would make sure the door was locked by trying knob thirty times to make sure the lock had caught and the door wouldn’t suddenly spring open after we were gone. I could hear her counting under breath. I tried assuming locking-up duties myself but it didn’t help. It didn’t matter who locked the door, she had to try it thirty times before we left. And I had to stand there and watch, to make sure she didn’t walk off and absentmindedly leave her keys in the lock. The woman who lived upstairs from us had done this, not on her way out but when she had come home from shopping. The keys stayed there all day until finally the guy across the hall came home from work, saw them, and knocked on the door to give them to her. She told my mother about it thinking it was kind of funny in retrospect, not realising this was one of my mother’s worst nightmares.
Well, at least I don’t have a set number of times I have to check the calendar.
But even if I did, what the hell. So I’m quirkalicious. Who isn’t? Could be worse. Has been worse.
Yeah, you read that right. First I was terminal. Then I was incurable. Now I’ve decided incorrigible is really the most accurate term. Seriously, it only makes sense––I mean, I’m incorrigible, therefore my cancer must be as well.
Terminal and incurable aren’t very good at parties but incorrigible is something you can have a little fun with. You can take the piss out of it whenever you want. Sometimes it’s tiresome and boring; when it gets that way, you can ignore it in favour of something with more depth and meaning. And when you’re feeling more energetic, you can scorch it with two or three one-liners to remind it that you’re the real talent and it’s just a one-trick pony.
Incorrigible cancer: eventually, it may revert to its previous status. Well, fck it if it can’t take a joke. Just because it loses its sense of humour doesn’t meant I have to lose mine.