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.