It’s been a while since I last wrote about cancer, largely because I don’t consciously think about it much these days, three years post-treatment. Then someone will ask me, with a concerned and meaningful look: “How are you?”
As far as cancer goes, I’m fine. I’m down to one annual round of mammograms, followed by visits to all my doctors, who tell me everything is good. This summer will probably be the last time I see the radiation doc. I need to see the oncologist at least annually, because I’m still on tamoxifen.
Tamoxifen suppresses the production of estrogen, especially in the ovaries, bringing on an abrupt and drastic menopause. This is necessary because the cancer I had was hormone-sensitive, and if there are any cancer cells left lurking somewhere in my body that didn’t get wiped out by chemo and radiation, we don’t want them to encounter any hormones to get excited about.
When your ovaries stop producing estrogen (tested by measuring by estrogen levels in the blood), you’re considered to be in full menopause. Under the usual treatment regimen, you then switch from tamoxifen to an aromatase inhibitor, which suppresses the (lesser) production of estrogen in other parts of your body. Unfortunately, all of the currently available drugs in this class can have bad side effects, and these effects vary unpredictably among patients.
I tried two of them. Letrozole affected my mood so badly that I did not take it for long. I was on exemestane for five months before I realized that it was the source of the terrible pains in my hips, knees, legs, and feet (nearly bad enough at night to make me cry, and sometimes bad enough to wake me up from sound sleep – which I don’t get enough of as it is!). I felt as if I’d suddenly gotten advanced arthritis, and feared that I was going to be in pain for the rest of my life. But my GP said I didn’t have arthritis at all, which meant the culprit was likely the exemestane. Sure enough, the pain disappeared within a couple of weeks after my oncologist switched me back to tamoxifen.
Tamoxifen is 10-15% less effective in deterring a recurrence of cancer for people already in menopause, and I’ll have to take it for years longer than I would have an aromatase inhibitor. Tamoxifen carries some risks of its own, such as an increased incidence of uterine cancer. I have an IUD, which my gynecologist tells me helps to discourage the growth of uterine cancers, so I’ll keep it even though I no longer need it for birth control. Tamoxifen also causes bone density loss, so I take a lot of vitamin D, and have bone scans every two years. I’m not fragile yet, but I’m conscious that a fall will be increasingly likely to lead to a break – so I’m cautious.
Still, all of this is better than the pain I had with the exemestane. There is no “quality of life” with pain like that: it’s brutal, depressing, and exhausting.
I still deal with lesser daily discomforts, some of which may be with me for the rest of my life. I would have been in full menopause by now anyway, but it’s hard to know whether my symptoms (hot flashes, poor sleep, erratic body temperature, headaches) are worse on tamoxifen than they might have been in a natural menopause. The menopause experience varies widely among women, and not much is understood about it, possibly because no one bothers to study things that affect older women. Before cancer, I was taking hormone replacement therapy to alleviate the symptoms of menopause, but that’s no longer an option.
Some antidepressants can help relieve hot flashes. I tried that a while ago. For a few, glorious days my body temperature felt stable and normal. But that good effect diminished, and then I realized what it’s actually like to be on antidepressants (at least for me): I didn’t have bad moods, but I also didn’t have good moods, and I didn’t really enjoy… anything. This felt like a stupid way to go through life for a person who doesn’t need the mood control, so I stopped. And that was apparently my last chemical option for dealing with hot flashes. Sigh.
Thanks to hot flashes, I usually wake up every two hours, every night. On the rare occasions when I sleep through a hot flash, I sweat through my pajamas and the bedsheets, and then wake up drenched, cold, miserable, and having to deal with a wet bed. To add to the fun, the usual pattern is that I get very cold right before the hot flash, so I’ll start out piling on blankets, heating my feet, etc., knowing that in just a few minutes I’m going to be throwing everything off me and turning on the fan. I sleep in layers – a sheet, a cotton blanket, then a light comforter on top – so that I have options. And I have a remote-controlled fan on my bedside table so I’m not fumbling around trying to switch it on.
I travel with extra sleep shirts and a USB-chargeable mini fan (a thoughtful gift from Brendan) that I can prop on a hotel bedside table.
My immune system has recovered from chemo, back to its previous baseline of not-terribly-good. I still get the same sinus infections I have had since youth, but I am no more or less susceptible to other kinds of illnesses than I was before chemo.
Neuropathy in my feet is still a factor, and that is unlikely to get any better: the nerve damage done by chemo is, at this point, permanent. On my oncologist’s recommendation, I take vitamins B6 and B12, which seem to alleviate the symptoms. Nevertheless, sometimes my feet hurt, sometimes they’re hot, sometimes they’re cold. I prefer shoes that I can wear with or without socks, as I need to in the moment, and I sometimes carry around different types of socks (wool and cotton) in case my feet get too hot or too cold. At home, I use a microwaveable flax pack to get heat to my feet quickly.
Aside: If you get upset over someone who takes off their socks and shoes in a plane or wherever, be aware that that person may have a similar problem to mine. At times when my feet are burning hot, wearing anything at all on them can be painful. I have taken my shoes off in stores to get relief from a cool floor. So, if you’re tempted to shame someone for baring their feet, think again. You have no idea why they’re doing it, and the reason might be pain.
Watering eyes. This started during chemo – outside air caused my eyes to water uncontrollably. It’s not as bad now as it was then, but my eyes have always been sensitive, and have remained even more so since chemo. I very rarely wear makeup anymore. Oh, well. One less thing to hassle with.
I do try to pencil in eyebrows, because my original ones never quite came back after the chemo hair loss. I’m not very good at drawing them on (it’s something I never did before cancer), and it rubs off quickly. Sigh. Maybe I’ll get eyebrows tattooed on.
At least my hair came back nicely. The first post-chemo growth still has a barely noticeable wave that I never had before in my life (it will eventually all be cut off in my usual haircuts).
So… I’m alive, and expect to remain so. Though I have to deal with the side-effects and after-effects of cancer treatment all day and night, every day and night, I am generally focused on those things as phenomena unto themselves, not in relation to cancer. I don’t dwell on whether that cancer might recur – at this point, it’s more likely that I’ll get some other cancer later in life, possibly as a result of the chemo (e.g., one of the drugs I was given can cause lymphoma twenty years on). But it’s too soon to worry about that.
I still don’t have any big lessons that I feel cancer taught me. I already knew to cherish the people I love and the experiences I can have, more than things I can own. I already didn’t waste much time on bullshit. I already had goals that I was striving towards; cancer was just an obstacle, a delay to be got through.
Many cancers are survivable nowadays, and more will be over time, though there is probably no such thing as a universal cure for what is actually thousands of different maladies. But what you have to go through to survive cancer is horrible, and I recommend doing whatever you can to avoid getting it in the first place. Don’t smoke. And maybe cut down on alcohol.
Wait, maybe I do have one post-cancer lesson to share: don’t fuck with me. I have been through worse than you, and I’m still here.
As a young child in Thailand, I didn’t have access to many comics – only the handfuls that other expat kids brought with them from the US. I was vaguely familiar with Mickey Mouse et al, more because of their status as global cultural icons than because I’d seen much of them. Peanuts was a family touchstone (maybe the strips ran in the military newspaper we occasionally received?), and we had several Peanuts books which I read over and over.
On our trip through Europe in 1969 we acquired a few Asterix books. I loved these for their funny stories and clever wordplay. My dad, the inveterate punster, loved to quote: “We’ll be driven into the Nile!” – “We’ll be annihilated!”
Even on such slight exposure, I fell in love with comics. I also adored film animation, though, again, I didn’t get much chance to see it – I didn’t have the ready access to TV and movie cartoons that my peers in the US enjoyed.
But I didn’t love everything about comics. Most of the characters, to my eye, were simply ugly. The Peanuts and Harvey Comics characters, though human, had enormous heads and chunky, ungraceful bodies. Anthropomorphic characters, like Mickey or Baby Huey, appealed to me even less – they had none of the beauties of real animals or real people.
The Disney princesses were visually appealing, but I was annoyed by the Disney stories of my childhood. Though I loved fairy tales and fables, myths and magic, I had no sympathy for characters lying around waiting to be rescued: I wanted to be the one riding a horse and wielding a sword!
When we moved to the US, I was able to watch Saturday morning cartoons just like everyone else, and I read comics at others’ houses, though I don’t recall owning any myself. Superhero comics didn’t excite me: Batman, Superman, Spiderman – clearly, women weren’t having much of the fun.
I didn’t know about manga until college, when I ran across Frederic Schodt’s Manga! Manga!: The World of Japanese Comics. I loved the prettier style of these comics, especially in the ones aimed at girls/women. Not much was translated at the time. I considered learning Japanese so that I could read them, especially The Rose of Versailles – which, frustratingly, is still not available in English.
The first time I saw Elfquest was during a D&D game. (Of course I played D&D.) Someone had brought along the first one or two collected editions. I stopped right in the middle of the game and read until I was finished. Finally: a visually stunning comic with characters (including female ones!) and a story that I could care about.
In the following years, I went to a lot of trouble to keep up with issues as they came out, even as I moved from country to country. I can’t remember how I obtained them in, eg, Jakarta, Indonesia in 1984. Maybe my friends back in Austin were mailing them to me.
Yes, there were other comics I came to like, partly because Elfquest had me haunting my local comic stores, looking for more titles that would appeal to me on all the levels that Elfquest did. I found a few over the years, but Elfquest will always be my favorite.
Many people have written about how Elfquest changed their lives, or (when encountered at a young age) helped them grow up to be more loving, tolerant, and kind, with different ideas about courage, friendship, family, gender equality, and sexual freedom than they might have imbibed at home. The elves of Elfquest model kindness and respect for all living beings, while having adventures and leading intense, full lives.
For myself, this aspect of Elfquest was less formative. I had grown up a hippie kid with free-loving parents who encouraged me to be whatever I wished and dreamed, “just so long as you don’t hurt anybody.” My concept of family was fluid, even before I spent four years at an international boarding school (living with a tribe of your peers, everyone feels like “family”). Those elements in Elfquest, which have been so freeing and revelatory to many of its readers, for me were simply a reinforcement of what I already believed. I could perhaps say of Elfquest what my daughter once said of Buffy: those “unusual” ways of being were already part of my consciousness and beliefs – but Elfquest made them cool.
My main lesson from Elfquest has been something else. What struck me from the beginning as real magic is the partnership between Wendy and Richard Pini, its creators. I always believed it to be real (among other clues, their values and beliefs about human relationships are demonstrated in the behaviors of their elves). And yet, deep down, I didn’t believe that it was possible for a human couple to be partners in their working lives as well as their home lives.
I’m aware of other examples such as the Curies, but… I thought it just wasn’t possible for ordinary mortals to enjoy, respect, and value each other so much on every level that they could love each other deeply AND spend (it seemed) every waking moment working intensely together to create wonderful things.
So I really, REALLY didn’t expect it to happen to me.
But it did. I now have a lifemate with whom I share all the things you’d expect lifemates to share, but we’re also professional partners. Even when not working directly together, we spend most of our leisure hours discussing ways to make our industry better (in both technological and human terms). We don’t get tired of our work, or of each other.
This still amazes me.
It’s possible-to-likely that the Pinis and their creation deserve some of the credit for this, both directly and indirectly. My life has been made richer by them, as well as their creation. Thank you, Wendy and Richard, for bringing the beauty of your work and your partnership into my life.
I could have written this story years ago, or years hence. I’m posting it now because Elfquest is drawing to something of a conclusion – the final issue of The Final Quest will be published soon. But I can still love reading it for another forty years, if I last that long.
Last Christmas (2016) we did not spend in Australia, partly because we had just had a vacation in India in October/November, but also because we were going to Hobart, Tasmania, in January for linux.conf.au – Brendan was speaking, I attended the Community Day, which was a great opportunity to learn from old friends and new.
At Ericsson, I was doing content and social media tasks that I’d been managing interns and contractors to do the previous year. The company was (still is) in crisis, it was time for a job change, and I was out looking – always a stressful process in itself.
In May, I resigned from Ericsson and had a few weeks off between jobs (I gave a hint what my next gig would be – did you spot it?). I spent the time off visiting a dear friend in Kansas, and my daughter in New York.
Had a very busy first week: new hire orientation, which I left early to fly to Seattle, a TODO Group meeting, AWS Community Day in SF, and all the usual new hire stuff like getting my new laptop set up. There was a lot of training to be got through.
While listening to hours and hours of training, I’ve been doodling (keeping my hands busy focuses my attention). pic.twitter.com/3lgm2gsIS9
Anticipating a lot more commuting, I bought a new car:
(It’s a hybrid Camry. When the worst thing that Consumer Reports can find to say is: “Everyone has one,” that’s the car for me. Every other part of my life is so unpredictable, I want transportation that I don’t have to think about.)
The last week in July, I was in Seattle for an internal event with AWS developer evangelists – had fun getting to know some of them.
Unfortunately, that was the week that Seattle was blanketed in smoke from forest fires in British Columbia – the air quality was as bad as Delhi’s. For me, this triggered a sinus infection which was to prove hard to shake (yes, climate change is hazardous to health).
I was walking out of San Jose airport to catch a car back home when I got a call from Ilona: Celeste had died. I’m still not used to the idea that this force of nature is no longer in my world.
In August I completed my annual round of post-cancer tests and checkups: all is well on that (my) front.
“I love you” is a wonderful phrase. But there’s a lot to be said for: “You are cancer-free.” (Two years post-treatment, and all is well.)
Then Brendan and I went to LA for the Linux Foundation conferences, at which we both spoke – I think that was a first. My talk on “Marketing Your Open Source Project” was not recorded, but they did a nice post about it later.
After that, we went to Paris, where Brendan was speaking at two conferences back to back. We stayed at the stunningly fabulous home of a Woodstock classmate of mine.
Brendan decided that his favorite thing in all of Europe was the private pool in the basement.
Brendan had a significant birthday. With important help from his colleague Guy (shown at left), I pulled off a surprise birthday party which actually was a surprise:
I hung out at USENIX LISA (which Brendan will be co-chairing next year, along with Rikki Endsley) in San Francisco, and also had a procedure – basically, a power rinse – on my sinuses to try to clear the infection, which had not responded to five or six rounds of antibiotics (it’s likely that the critters in my sinuses had formed biofilms, making them hard to attack with medication).
October was also the month that #metoo started. I had already shared manystories about lifelong experiences of sexual harassment, which for me (fortunately) have mostly not occurred in the workplace.
Late in November, I launched the AWS Open Source blog. This is and will be the main thing keeping me busy at work, and it’s a fun, challenging job – like being a journalist, where my beat is almost anything to do with open source at or on AWS (or any other part of Amazon). That means a potentially huge variety of projects, most of them deeply technical, being created by brilliant people to solve interesting problems. If you know me or my work, you’ll know that helping people communicate about complex technologies is my career sweet spot. Now I just have to do more of it, and faster, to keep up with a regular blogging schedule.
The blog started the week before re:Invent, AWS’ biggest event of the year, at which Brendan spoke. Ironically, I did not attend: employees go only if they have specific jobs to do at the conference (I probably will have, next year). I didn’t want to spend my birthday week alone at home, so I went to New York to see Ross and Dan. I did work that week (had plenty to do for re:Invent even without being there, and a new blog to keep running), but I also played: we saw Hamilton (my second time, Ross and Dan’s first), had a birthday dinner with a few friends, and other time for company and conversation.
Sarah got me this wonderfully apropos present:
I returned to the Bay Area that Friday night. On the Sunday, Brendan, Mitchell, and I attended Celeste’s memorial service (which had been postponed from October due to wildfire smoke).
Monday morning, Rossella called me: her father Enrico had had a stroke. She flew to Italy that night. He’s now in a clinic in Milan, undergoing intensive physical therapy. Enrico and I are far from close these days – we haven’t even spoken in years – but of course this makes me sad for him, and for Ross.
My Woodstock family continue to be an active part of my life – we had visits this year from Sara, Denise, and Neerja, Sarah was at my birthday dinner in New York, and I regularly see Jonake, who also lives here in the Bay Area.
Sadly, we lost a much-loved member of the Woodstock family this year:
As for politics – because, yes, politics is an important factor in everyday life – I do what I can. I donate. I call. I write. I listen and discuss on Twitter and Facebook. I try to warn Facebook friends about untrustworthy “news” sources. (I’d been doing that for years already.)
I give monthly to Planned Parenthood, primarily because birth control is a critical matter of women’s health, secondarily so that others have a chance to catch cancer early, as I did. I also give monthly to the ACLU and the SPLC. I pay for good journalism (far more than I have time to read): the Washington Post, the NYT (yes, with reservations), Mother Jones, the Atlantic, the Economist, Pando, and perhaps others that I don’t remember right now.
In all these ways, I pay attention.
It is in fact possible to love your country & also be angry at its injustices. If you’re not angry, then you’re not paying attention. https://t.co/scOQfvjbPO
Although many things are going well for me personally right now, I am grieving, raging, and despairing at the state of my country. No matter how well I am doing myself, I cannot really enjoy it when I know that so much is so wrong for so many. And has been for so long – as I have been aware for years.
I’m also aware that there are direct, if not immediate, threats to my own well-being and my very life. I’m a cancer survivor. Without the Obamacare guarantee of coverage for people with pre-existing conditions (at affordable prices), I live in terror of not having a job with health insurance. And it now looks likely that Medicare will be cut significantly just about the time I’d become eligible for it, if not sooner. Unless we manage to forestall the wrecking of the US economy and social support system long enough for a government of integrity and humanity to be elected. Even then, it will take time to undo the damage now being done.
On top of these social and economic disasters, we have the renewed possibility of nuclear war (oh, well, it was nice to have a few decades’ respite from that particular worry). And the onrushing environmental disaster being wreaked upon our planet. In the scale of things, the wellbeing of myself, my family, and even my country seem relatively unimportant.
Uh, happy new year?
I’m not sure what is the rational response to a world gone mad. The best advice I can think of is: take care of those you call your own (and as many others as you can manage) and keep good company.
When I attended US schools in the 1970s, the term “bullying” was used to describe extreme cases of recurrent physical abuse of kids, by kids. Verbal abuse, no matter how severe, was identified by the soft term “teasing.”
Most of the adults around us did not see teasing as a problem that they could or should address. Everyone advised victims to reply with the childish chant: “Sticks and stones may break my bones, but words can never hurt me.” We all knew that this was bullshit: words can hurt – a lot – and are often intended to do so. But adults believed that: “It’s all part of growing up; kids have to toughen up and learn to handle it.”