Some of you may be aware, Internets, that I had to have a medical thing done last week. The short not-TMI version of this was that I had a hysteroscopy due to weirdness in my menstrual cycles. I had previously been wondering whether this was due to my going perimenopausal due to being in my mid-40’s, but given my previous history with my thyroidectomy and my stage 0 breast cancer, I had it strongly recommended to me that we should have my uterus checked out just to be sure.
I just got called with the pathology results from the sample they took out. The phrase “pre-cancerous change” was used in the conversation I had with the doctor.
And he recommended we have my uterus out. And my ovaries and tubes as well.
I am to come in on the 10th for a followup appointment to discuss these results and what my options are moving forward.
I wanted to be done with having to have parts of my body cut out due to threatening to turn into cancer.
But apparently I’m not.
God fucking dammit.
ETA: To everybody who’s been expressing their support to me on the various sites I’ve posted this news to, thank you.
At this point I’m mostly just tired and numb. I can’t even manage to muster any real rage for this–because as I told the doctor when he called me with the news, part of me was half-expecting something like this as worst case scenario just because I have been down this road before. I do have a history of portions of my body up and deciding to pull shit like this.
I can deal with it, I know I can at this point just because I have before, and I’m at least grateful that this time around I had a couple of years’ breathing room to get my strength back.
Right now though all I can think of is Tommy in O Brother Where Art Thou?, when Delmer boggles at him about trading his immortal soul to the Devil in exchange for being taught how to play the guitar. Tommy’s answer was a laconic “well, I wasn’t usin’ it!”
I would just like to now protest that losing my uterus WILL NOT IN FACT IMPROVE MY GUITAR PLAYING. Something seems medically awry here. I feel like I should be getting some kind of musical superpower out of this deal.
Earlier today I had to link again to a post I did earlier this year regarding my take on the memes that periodically go around the social networks (Facebook is where I’ve personally seen this happening but it wouldn’t surprise me if it showed up elsewhere) and encourage women to post cryptic status messages in the name of raising breast cancer awareness. I think I’ve made it pretty clear at this point what my stance is on those memes, and the convenience of linking back to that post is one small part of why I posted it–so I won’t have to post it AGAIN.
This post is a followup to that and has to do with breast cancer awareness in general. As I asserted in that previous post, in my experience it’s pretty nigh impossible, at least in North America, to NOT be aware of breast cancer. For the last several years, I’ve found that in order to NOT be aware of breast cancer, you pretty much have to avoid going in a store or looking at the Internet for the entire month of October in particular. Shelves in American stores get flooded with products branded with pink ribbons. The Safeway I usually get my groceries from holds month-long in-store fundraisers to get people to donate a few dollars along with their purchases, so yeah, I get reminded of what month it is every time I set foot in the place, all throughout October.
So yeah, I don’t think the lack of breast cancer awareness is the problem. If anything, I think there’s so much awareness of breast cancer that it’s taken on this amorphous existence and frequently doesn’t seem to have much connection to reality. Or to the women (and sometimes men) that have to fight the disease in the first place.
This particularly goes through my mind when I see well-meaning campaigns with names like Save the Ta-Tas or Books for Boobs going around. Notice where the emphasis on those names is? It’s on the breasts. As if the breasts themselves are these independent entities that are in danger of extinction, and which must be saved at all costs.
And while I got off pretty lightly in the whole battle with breast cancer thing, I nonetheless have had it change the course of my life enough that I’m really, really tired of seeing so much emphasis placed on saving the breasts and not much at all on saving the women.
Let me tell you a bit about what it’s like to be a stage 0 DCIS patient, Internets.
It means that you have to negotiate with your workplace to take time off to go do radiation therapy. And that even if you’re young and in reasonably good health, it will be a significant drain on your energy and ability to handle life in general. If you’re fortunate, you’ll have a workplace that’s supportive of your medical needs and the simple fact that if you’re having to go do radiation therapy, this means that sometimes you will not actually be in the office. Not all breast cancer patients are that fortunate.
It means that you have to go through several massively stress-inducing conversations with your medical professionals about what exactly this means for your life. Especially if you have a family history of cancer. It means you have to spend many months trying not to flip out because your mother died of cancer, and you’ve been diagnosed at about the same age as she died, and even though you’re not particularly prone to depression or anxiety, you still can’t escape the fear of shit am I doomed?
It means that you have to have mammograms every six months, and if there’s the slightest irregularity in the results, your stress level gets to spike back up. And it means you get to go in for periodic new MRIs, too.
It means you wake up from a mastectomy to discover half of what you used to see every time you looked down is gone. You have body dysphoria because that just does not make sense to you, and your center of gravity is off, and wearing a prosthetic only helps when you’re actually wearing a bra.
It means that when you opt for reconstruction surgery, you get to prolong the months of going in for medical activity as a chunk of your back is moved around in front to build a brand new breast, and that tissue has to be stretched before a proper implant can be put in. This is not fun, and it’s not comfortable, and even once the implant is in it feels distinctly weird.
It means that when your reconstruction surgery is done, you’re going to have some big lingering ugly scars even if you’re more or less symmetrical again. Emphasis on the “or less”.
It means that because a significant portion of your musculature has been rearranged, the entire right half of your upper body is prone to tensing up in odd ways. You have to be careful about twisting in the wrong direction if you want to avoid cramps along your back or chest, and you have to go in for semi-regular massage by way of pain management. Especially during winter months when it’s cold. Or damp. Or both. Like it gets in Seattle. (I don’t so much mind the gray of Seattle winters, but I’ve gotten a LOT less fond of the damp.) And it also means that you have to be very careful not to take too much aspirin or ibuprofen, and that eventually, you have to accustom yourself to a low default rumble of pain in your consciousness. An entirely pain-free day is a blessing and a gift.
Speaking of pain management, it means you get a lot more aware of your personal pain threshholds and you still have to struggle to acknowledge when you’re cranky and stressed because you’re in pain. And you have to still periodically remind yourself that it’s okay to step back and deal with that.
It means you get to be skittish about wearing a one-piece bathing suit, and never mind a bikini, for reasons that have nothing to do with your figure or your weight.
It means that even if you have a decent paying job with good medical benefits, you are still going to sink several thousand dollars into your medical care costs. And let’s not even talk about what a cancer patient who doesn’t have good medical benefits is going to have to deal with. (Hint: see previous commentary re: the fucked-up state of the American health care system.)
It means that you get twitchy every time you see articles like this one circulating the Net, because yes, it has in fact occurred to you to wonder whether you were over-diagnosed, and whether there was any possibility whatsoever that you might have avoided three years of stress and massive surgical procedures. And then you have to just deal with it, ’cause it ain’t like you can go back and change what happened now.
And I was a stage 0 DCIS patient, Internets. Kick this up a few more orders of magnitude for every additional stage of severity a breast cancer patient might go through. I was really, really fortunate and I’m grateful for that to this day. But I’m also very cognizant of what other women I know have gone through fighting this same fight.
So I’d like to ask you all, this coming October, when you see the inevitable Breast Cancer Awareness campaigns fire up… please think about it in terms of the people who have to deal with it.
We are working women and retirees. We are writers and musicians and mining engineers and product managers and countless other professions. We are mothers and grandmothers and adults without any children at all. We are sisters and daughters and wives. We are young. We are old. And we are every age in between. We are countless colors and creeds and sexual orientations.
We are women, and we are defined by much, much more than our breasts.
Because another of these appears to be going around Facebook again, Internets, it’s time for me to do another post on the topic of “Please Leave Anna Out of These Status Update Games”. Somebody just tried to loop me into one of these again. I’ve already privately PMed her about that, and this post is not directed at her. It’s for the rest of you.
Y’all may remember that a couple years ago, a game went around Facebook where women were encouraging each other to post cryptic messages about various places they were leaving their handbags, and not telling their male friends why they were posting this stuff. The ostensible idea was to raise awareness of breast cancer. Now, I like a fun Internet meme as much as the next girl. But sorry, for me, this particular one isn’t fun. In fact, I find it actively depressing, for several reasons.
One, first and foremost, hi, I’m a breast cancer survivor. I lucked out and was only stage 0, and never had to do chemo. But I did have to do radiation therapy and a mastectomy. One of my breasts is a stunt breast, and I have big ugly scars under my bra. So trust me, I’m very, very aware of breast cancer. I’d like to be a little bit less aware of it, in fact.
I lost my thyroid as well, due to five, count ’em, five growing tumors on it it that never got to be actual cancer because we took them out of me before they could do that. So yeah, long history here of doctors having to cut out parts of my body to cancerous or pre-cancerous behavior of my tissues.
Two, I really dislike the inherent assumption that one’s male friends aren’t already well aware of breast cancer. I’ve got a male housemate who’s certainly aware of everything I went through, and he and many more of my male friends were very supportive to me all throughout my cycle of treatments and surgeries. I know four other women, friends and/or former coworkers, who’ve gone through more severe versions of the same fight I have–and I guarantee you that every one of their male friends and family members are very, very aware of breast cancer.
And even if a man doesn’t have someone in his life who’s suffered from breast cancer, seriously, people, who isn’t aware of breast cancer in general these days? You can’t escape awareness of it, especially during the month of October, when it seems like every company in North America falls all over itself to slap pink ribbons on its products in the name of raising breast cancer awareness. It’s impossible to miss, in fact.
Three, given my starting point of assuming that yeah, actually, my male friends already know about breast cancer because they have brains in their heads and have observed the world around them, I find absolutely no point whatsoever in doing cutesy, cryptic status updates. If the menfolk already know about the thing you’re ostensibly raising awareness about, then ultimately, sorry, all you’re doing is spamming your Facebook friends with weird little status updates. You may make one or two of your male friends go ‘um, so what’s up with this?’ Assuming that they see your status update at all. And given Facebook’s history of making it tough to see updates from your own friends (another rant entirely), there’s absolutely no guarantee of that anyway.
Four, these games never actually mention breast cancer. You know what works to raise awareness of a thing? Talking about that thing. You know what doesn’t work to raise awareness of a thing? Not talking about that thing.
So if your goal is to raise male awareness of breast cancer, and you go about this by posting cryptic status updates for your male friends to read that never actually mention breast cancer, then how exactly does this raise their awareness?
Pro tip: it doesn’t. Instead, you’re putting way more emphasis on “let’s make the boys notice us” than you are on “let’s raise male awareness about breast cancer”. I like male attention as much as the next het or bi girl, but again, I like to assume that the men I know have brains and that they know how to use them. And that if I need to raise their awareness about something, I can outright say to them, “Hey, guys? There’s a thing I want you to know about.”
And then I tell them about that thing.
Five, these games also never have any actual follow-through. Raising awareness is all well and good, but I have yet to see any of these things proceed to the next step: what to do once you are, in fact, aware of breast cancer.
Because seriously, people, like I said–breast cancer awareness is pervasive in Western society these days. Nobody with half a brain in their heads is unaware that it exists. Raising breast cancer awareness is not the issue we need to be addressing here.
The issue we need to be addressing here is purging the scourge that is cancer off of the goddamn earth. Not just breast cancer, either, though it’s politically easy and safe to talk about that particular form of it just because it gets you cred about being friendly to women. But here’s the thing.
Cancer is not easy. It’s not safe. It fucking well kills people, and if it doesn’t kill you, it may well drive you into financial insolvency if you’re not lucky enough to have decent health insurance (and the fucked-up state of the American health system is yet another rant entirely). My mother died from cancer at the ridiculously young age of 38 because she had a goddamn tumor in her brain. My young cousin Phillip has been battling stage 4 bone cancer for the last couple of years, with ongoing regimens of radiation and chemo. I have a friend whose brain tumor put her so far in the hole financially that she still has to live on state support. My housemate lost a very close friend of his to cancer as well. Two more close friends of mine had a family member have to deal with a brain tumor, though fortunately she was young and strong and came out of it okay.
In the broader picture of society at large, we hear every day about another famous person who’s either suffering from cancer or who’s about to die of it. Ian McKellen has prostate cancer. Cancer just took out Roger Ebert, and we know now that it’s going to take out SF author Iain Banks in only a few more short months.
And given how many people I know who have either suffered from cancer themselves, have loved ones who are doing so, or have lost loved ones to it, I think I can safely say that yes, we’re all on the same page here. The page which has emblazoned upon it, in bright red capital letters: FUCK YOU, CANCER.
So yeah. Please leave me out of the status update games. And if you really want to do something about the problem, people, consider donating your money instead. Go to cancer.org and find out how you can do so. We don’t have a cure yet, but actual funding helps. Even if a cure hasn’t been found, the improvement of cancer treatments alone in the last three decades has meant that I’ve had it infinitely easier than my mother did. I’ve already lived longer than she did, and I have every expectation of several more decades to come, because I’ve got good medical support at my back.
Just the other day I was posting to the social networks that I’d just realized that I’d passed the five-year mark since my original breast cancer diagnosis in 2007, and was closing in on five years since I’d been pronounced cancer-free and had commenced reconstruction surgery. (All that got started in 2008, until everything was finished off in 2009.)
I’d just had my latest mammogram this past week, and was expecting it to be routine. They’ve been having me in for regular mammograms ever since the 2007-2009 excitements, and they’ve been keeping a really, really sharp eye on me in general.
Which means that when they see things like new calcifications in a mammogram, this trips all their alarms.
Calcifications in the breast, for those of you who don’t know, are one of the very early warning indicators of breast cancer. They are in fact what got me started on the first round of fun, with my first mammogram back in 2007. Apparently now I have some new ones–this time on the left side.
They are very tiny, only 3mm in size. But the fact that they’re there at all, given my history, is suspicious. So the team at Evergreen has scheduled me for a biopsy next week to see if they can get a better look at them. Since the calcifications in question are so tiny, however, a biopsy might not even work. In that event, we punt to Plan B–sending me to the same surgeon I worked with before, who’d take out the suspicious area. The biopsy is scheduled for Monday. The backup surgeon visit is scheduled for Tuesday.
And Wednesday is my birthday. Which means I get a biopsy for my birthday. And another possible round of DCIS, depending on how this goes. I don’t mind telling you, Internets, I’m really nervous about this, because really not in the mood to do this again.
All good thoughts, crossed fingers, prayers, lit candles, fluffy small cute creatures, awesome bouzouki players, podorythmic fiddle players, or crack ninja assassin teams to take out whatever gnomes have dedicated themselves to taking over what’s left of my breasts would be most appreciated. If I have to do this again, though, at least this time my choices will be much clearer. If there’s anything going on on the left, we’ll be going straight to mastectomy.
You can’t be on the Internet tonight and not be aware that Steve Jobs has died. That hit me bleakly–less because I’m a user of Apple products (Macbook and iPhone and iPad, yo), and more just because I’m a cancer survivor. And even though I didn’t know Mr. Jobs as a human being, his work nonetheless has had a formative effect on my life the last several years. I cannot help but feel for the loss of someone who’s touched my life like that.
I played “Da Slockit Light” for him tonight–by reading the sheet music for it out of the TunePal app on my iPad, which has become a critical tool for my session practice.
And after I did that, I fired up Le Vent du Nord’s “Lanlaire” on my iPhone, and listened hard via the earbuds to try to pick out the first few measures of Olivier Demers’ fiddle solo. Because, again, music, and music delivered to me on a device that wouldn’t have existed–certainly not in its current known forms, anyway–without Steve Jobs.
And I’ve raised a glass to him tonight: Ardbeg, mixed with Blenheim spicy ginger ale.
RIP, Mr. Jobs. Thanks for all you did, sir.