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Sep 02 2009

Just when you thought it was safe

<small>Julia's surgeons break out the barbecue forks.</small>

Julia's surgeons break out the barbecue forks.

The Blogulation Department here at Spinster HQ has been on sabbatical due to auntly apathy and writer’s block.

The deadly apathy/writer’s block combo, which results from intermittently spasmodic crystalline antimatter anomalies in the obstreperal lobe — brought on, no doubt, by extended megatheocorporatocratic interference — is also responsible for my having chucked college, all my rock bands, my juicy restaurant critic gig, and of course, my science fiction novel.

But today I crawl out of my lair to present something for you fans of pictorial cancer blogs. Reader Julia emailed me recently with a link to her mastectomy website. Quoth Julia:

When I was going to have my mastectomy I tried to look up surgery photos online and couldn’t find any. This is understandable; women don’t often want to be photographed topless and especially not when they’re frightened and vulnerable. There’s also a very small window of opportunity to decide whether or not to photograph something like that and figure out how to make it happen. Since I couldn’t find photos when I wanted them, however, I decided to figure out how to make it happen. I had my entire mastectomy photographed as well as my hysterectomy and my port installation and a bunch of other things.

Julia does not lie; there are no mastectomy photos online. Veteran blamers may recall that I (and I’m sure I’m not the only one who has done this) uploaded a few gross post-operative pix featuring my staples and blood-bags and bruises and scars and so forth (see below), but it never occurred to me to document the actual surgeries, on accounta I’m stupid, and besides that shit makes me hurl.

<small/>;What’s left of my left side, feat. MC Gruesome Drain Tube. Yes, it was sewn directly to my skin with black thread. Yes, it hurt.<small>” title=”Boobalectomy '06, part 2″ width=”400″ height=”266″ class=”size-full wp-image-683″ /><p class=What’s left of my left side, feat. MC Gruesome Drain Tube. Yes, it was sewn directly to my skin with black thread. Yes, it hurt.

Julia’s hypothesis — that women don’t feel like flaunting their chests on the internet when they’re sick with a fatal disease — is right on the money, but I submit that there’s more to this dearth of mastectomy documentation than that.

I allude, as so I often do, to repellent social mores oozing forth from the Cult of Breast Cancer Survivorism: the brutality of treatment must be hidden from view if the cancer-industrial complex is to continue flourishing (at the expense of sick women) in the opulent manner to which it is accustomed. As per the Global Accords Governing Breast Cancer Patient Behavior, the breast cancer patient doesn’t photograph her surgery. The breast cancer patient (unless she has the effrontery to die from her disease) is a Survivor ™, a dainty little pink teddy-bear-lovin’ non-feminist who has bravely put all that unpleasantness behind her, who purports to have experienced immeasurable personal growth as a result of her illness. Meanwhile, as an ambassador for The Cure, she wears a pink scarf to protect the world from her scary chemo baldness. Her amputated breasts are “reconstructed” so the boob-lovin’ public won’t have to confront the horror of her amputations.* She’s a fighter, but not an activist. She’s plucky, but doesn’t challenge the status quo. As Samantha King writes in the enlightening Pink Ribbons, Inc:

[Women] are discouraged from questioning the underlying structures and guiding assumptions of the cancer-industrial complex. The culture of breast cancer survivorship does not, in other words, embrace patient-empowerment as a way to mobilize critical engagement with biomedical research, anger at governmental inactionk or resistance to social discrimination and inequality, even if its history is bound up with attempts to do just this.”

People can’t find out how really fucking gross treatment is, because if they did they might start thinking, hey, maybe preventing breast cancer — as opposed to waiting for women to get sick and then slamming them with a series of debilitating, barbaric procedures — is a good idea. But prevention is not in the interests of the megatheocorporatocracy. There is just too much filthy lucre to be made from selling the romantic notion of “cure.”

So, thanks, Julia, for pioneering the field of Internetian (rhymes with “Venetian”) breast amputation documentarism.

Also, fucking nice tattoo, girlfriend!

_____________________
* I never miss a golden opportunity to poop on the concept of breast reconstruction. This surgery serves no purpose except to appease the patriarchal demand for femininity by preserving the appearance of funbags. It’s not like the procedure actually reconstructs a breast (a breast is not a lump of abdominal fat relocated to the chest. A breast contains a functional mammary gland to nurse infants.). What this reconstruction procedure does is, it constructs a totally useless, cumbersome protuberance. The only reconstruction going on is the reconstruction of the patient’s feminine compliance. Nobody’s telling dude breast cancer patients to reconstruct their manboobs.

Pah.

Inevitably, women who have opted for reconstruction will take offense at these remarks. Don’t be silly, reconstructed women. Patriarchy, not you personally, is to blame for the expectation that you endure more surgeries than are necessary for your health. Post-operative fancy-free flat-chestiness is a luxury enjoyed only by a fortunate few who can afford to spit in the eye of the Beauty Ultimatum.

64 comments

3 pings

  1. B. Dagger Lee

    Julia’s site and photos are very cool, although I’m always disturbed when evidence is presented that I am not filled with glowing colored light.

    Also, she has a fennec fox that talks.

  2. Jill

    BDL, this may be evidence that Julia — or her right breast, at least — is not filled with glowing colored light, but surely the contingency remains plausible for you.

  3. Comrade PhysioProf

    One of the things that I find the most troubling about the lionization of those who live through cancer as morally sound “fighters”, “survivors”, “heros”, and “winners” is the implication that those who succumb did so due to a lack of moral fiber, fighting instinct, and/or some other things under their own control, and are thus “victims” and “losers”.

    The fact of the matter is that those who live through cancer and those who do not are separated by only two things–neither of which are under their own control: (1) dumb fucking luck of the draw as to how aggressive the cancer is and how able their own immune system is to combat it and (2) access to preventative and ameliorative medical care (i.e., socioeconomic class).

  4. Jezebella

    Word, Comrade. That rhetoric is back-handed victim-blaming.

  5. k8

    These photos of Julia’s are awesome. I work for a plastic surgeon who specializes in cleft lip and palate repair. Occasionally, we will get a breast cancer patient – but not often – because all the general surgeons know that he does not usually recommend reconstruction as a matter of course. He always says, “What do you need those things for anyway?” and when they say, “To feel like a whole woman.” I know that poor woman is going to get about an hour long lecture about how boobs don’t make you a woman and if her partner happens to be standing there, he’ll tell him/her to shut up – that she or he is not part of the discussion.

    I am constantly amazed at the shitty propaganda that these patients have been fed about the niceties of cancer and how they can “fight it” with all they’ve got or “give up” and die, sad and alone. Physioprof is right on. Some people simply die of cancer. And so often, the patients that we see have never been told this ugly truth. And they’ve never been shown pictures of what a “real” reconstruction may or may not look like. It’s not always pretty. The good doctor won’t even consider doing reconstruction until someone has been cancer free for a year. Why would you do that to your body while you’re busy fighting a deadly disease? But it’s all so nicely packaged anymore that people forget that little fact. Even the surgeons and the oncologists who treat them tend to leave that out.

    Some people call it inspiring to the patient to hear all that “You can do it!” bullshit. I call it lying.

  6. BadKitty

    One of the things that I find the most troubling about the lionization of those who live through cancer as morally sound “fighters”, “survivors”, “heros”, and “winners” is the implication that those who succumb did so due to a lack of moral fiber, fighting instinct, and/or some other things under their own control, and are thus “victims” and “losers”.

    A-fucking-men, Physioprof. I beat my breast cancer (I hope) rather handily. There wasn’t anything heroic about it. I did what I had to do and got lucky. A friend of mine fought like hell and threw everything at it she could but died at the ripe old age of 32. She was the heroic one who insisted on driving 150 miles to see a parade the week before she died because she wasn’t going to stop living until she was forced to.

    As a woman who did go through reconstruction, I now agree wholeheartedly with your opinion on breast recon, Twisty. At the time, I thought I was doing damage control; that somehow I could just move on afterwards and pretend the whole cancer thing hadn’t happened. Eh, it turns out, not so much. It’s almost exactly 3 years later and my chest still hurts every single damn day.

  7. intransigentia

    Fucking cancer took two people out of my world in the last week. The announcements that went out had those exact pernicious metaphors, “lost their battle with cancer”. In one case, the guy wasn’t even 40, and diagnosed sometime during the summer. And the language available just didn’t work. “We didn’t expect him to lose so quickly,” for fucks sake? Sounds like the commentator at a boxing match. I realise the president of a large (conservative) organization can’t address the members and say “Fuck You Cancer for killing our friend” but there’s got to be somethign better.

  8. goblinbee

    I think “Fuck you cancer for killing our friend” IS the something better.

  9. Bix

    Thank you for this, Jill. I’m always stuttering about trying to find words of explanation when friends are dismayed that I’m not on the “pink stuff” bandwagon, etc. Now I can just point them here.

    But I came out of lurkdom because I especially want to thank you for the pictures you posted in the Dirty Sexy Cancer (I forget if that’s the exact name?) archive. The self-portrait you took maybe three days after one of your mastectomies was the first and only photo I had seen of someone post op. I was diagnosed with Stage 0 DCIS in my right breast in April 2008. Your picture gave me the courage to face the amputation of my breast and to decide to have a prophylactic amputation of my left breast. Thank you again.

  10. Orange

    Our distinguished Comrade is right. There are probably even a few hardcore pessimists who gave up and were convinced their cancer would kill them but in whom treatment was successful. Most of the people who die of cancer fought like hell and had a strong will to live, but sometimes the fucking cancer has other ideas.

    Julia’s photos kicked ass.

  11. Julia

    Thank you so much for posting this… I really want to get the word out that those photos are available; they won’t make a great resource if nobody knows they’re there. Currently I’m in the middle of reconstruction but honestly I don’t know how I feel about it. I never was made to feel that it was needed, though, which is good. My reasoning for it went like this: fake boobs don’t last forever (about ten years), I liked my boobs, I liked having no boobs… I might like having fake boobs, and if I don’t, I can go back to no boobs later. I just like to try *everything* I can. Sometimes that means I try things and don’t like them, but that’s how I found out that I love chai brewed with red bull instead of milk (it’s like awesomely caffeinated hot spiced cider, but it sounds foul). If I had to say right now what I would end up with, I would probably say in a few years I would go back to no boobs… it looked amazing and was super comfortable and I could wear anything. But I’m on steroids now and I hurt and I’m tired so that could be swaying my opinion. Also I’m a hermity old lady with eight cats so I’m not basing my decision on anything other than personal preference and experimentation, although the cats liked the expanders best because they made great lap stairs.

    My next photo and journal project on the site is going to be about how steroids connected with a lot of cancer drugs cause weight gain and how people need to realize that they’re not alone in that and that it’s not because of something they’re doing wrong and that it should be viewed like other stereotypically cancer-associated physical-appearance side effects like rash or skin pigmentation or hair loss. When a woman loses her hair it’s supported and she can go to people for support but when she gains thirty pounds from steroids she’s afraid to even say so, you know? That’s just stupid.

    Also I loathe the “lost their fight with cancer” phrasing… it *does* sound like something they did wrong. I hate when people tell me I’m strong or brave… I always think “what was my alternative?” There was a cowardly option? I might have picked that one, heh. It’s so random… some people are fine for thirty years and some people are gone in thirty days. And I’m pretty sure anyone starting any speech with “fuck you cancer” would get nothing but applause.

  12. Julia

    Wow, sorry for the wall of text. I got drugs today.

  13. Julia

    Oh, crap… three comments. I shouldn’t be allowed to talk on drugs. Just wanted to add… I hate the term “reconstruction”. Whatever it is on my chest in no way resembles anything that has ever been on my chest before. They are not rebuilding my boobs. Whatever they are, they might be fun, I might like them for the five or ten years I have them before I go back to the awesome flat chestedness… I might not make it five years before I yank them. I might think they’re the best thing ever and get them again. But whatever they are and whatever I end up thinking about them, “reconstruction” does not cover it. I like to think of them like “door number two” (although that has kind of an unfortunate grade school poop association)… I could have this option, or I could have that option, but none of these options “construct” you “back” into some thing you were before the surgery that you’re not now.

  14. Pinko Punko

    Don’t forget the pink baseball bats for Mothers’ Day.

    Thank you to Julia for doing this.

  15. Magpie

    During my Mum’s treatment for breast cancer, everyone spoke about a ‘journey’ rather than a ‘battle’, for exactly the reasons Comrade Physioprof and others mentioned.

  16. Jill

    Aw, I dunno about all this “journey” stuff, either. It strikes kind of a delusional note in my ear. My father, who died of pancreatic cancer last year, kept referring to it as an “adventure” in an insistently upbeat tone and it used to drive me nuts. Whatever gets you through the night, though, I guess. He didn’t think he was going to die from it until 4 days before he did.

    I, on the other hand, am still convinced that I’m going to die of it, and I’ve had clear scans for 4 years. Cancer’s no journey. It’s a fucking awful disease.

    Also, for the record, confronting my own mortality was not a golden personal growth moment for me. It was a physical and emotional trauma, and to this day it wakes me up deranged and screaming in the middle of the night.

    Like I used to say to the crucifix on the wall while lying, morphined-out, in my crackly bed at the godbag hospital, thanks for the cancer, Jesus!

  17. Tina H

    Wow, Julia and Jill, thank you both.

  18. Jill

    Julia, I’m not judging you on the reconstruction dealio. A girl’s gotta do what a girl’s gotta do. I know what you’re going through, believe me.

  19. buttercup

    Yeah, my best friend died of brain cancer two years ago next month. she “fought” for ten years and in the end it took everything away from her. Sanity, dignity, reason, independence, everything. People at her funeral were all like “she was so brave and strong” and it pissed me off because they made it sound like if she’d just been a little braver and stronger she would have “won” this stupid boxing match. No, she had that tumor for over ten years, and when it finally woke up and went violently malignant, there wasn’t shit anyone could do. Fuck you cancer, indeed. It’s not a journey or an adventure or a fight, it’s a horrible disease that a lot of damn decent people die from.

  20. Ex-Tex

    Back in the days when I was still practicing radiation oncology, I ran into a huge downside to breast “reconstruction.” Having those fake boobs sitting there on the chest makes it real hard to diagnose a local recurrence of the cancer. If you’re flat-chested, it’s real easy to see it when the cancer grows back where the breasts used to be. When it’s growing back under a fake boob, not so much. I had patients miss their chances for a cure because of those fake boobs. For that reason I always heartily discouraged reconstruction.

  21. birkwearingblamer

    My father died of pancreatic cancer. He lived long enough to starve to death. It was horrific.

    I lost a friend to stage 4 breast cancer. She tried every treatment available. In the end, she had to drop out of clinical trials. She was so afraid at the end. I’m glad that she felt safe enough to tell me that. Fuck this brave cancer victim culture.

    The Lance Armstrong crowd is the worst about glorified cancer survivorship. Lance wins races to prove he still has his sportsy dudeliness, and he proved his virility by impregnating his girlfriend. He’s a “winner.” Guess everyone else that succumbed to cancer is a “loser.”

  22. birkwearingblamer

    Julia, thanks for the website. You’re an amazing woman! Glad that they could preserve your fantastic tattoo.

  23. Wendy Barsotti

    I too have been bravely fighting cancer and heroically undergoing multiple surgeries to reconstruct that which can’t be reconstructed. I had always wanted reconstruction, but fighting with the Health Insurance Buttwipes got me to a point where I had to consider going boobless for longer than the 10 months that I did. I could have done it, but I didn’t want to. I liked the way clothes fit, too. (There’s nothing heroic or brave about my choices. I agree that I had few options and none of them would have been cowardly.)

    I refer to it as an adventure, too, but with more than a little irony thrown in. However, I did get to travel because of cancer, I got to see New Orleans and spend a lot of time there. That was fun. I got to take a bunch of time off work, and I loved that. It wasn’t fabulous that I was in pain for much of that time, but whatev. I’d never spent the night in a hospital as a patient before and one must try everything once if one can. I got a bunch of pink stuff that I cast aside (except for the pink measuring cup and scraper that I use constantly while cooking).

    I kinda wanted to be bald, but missed that this time around. I could just shave my head, but that takes real bravery, right?

    Anyway, Julia, thanks for the butt-puckering images. There is an image site that is heavily moderated over at the reconstruction part of breastcancer.org. Women are pretty good at sharing their pics, the good, the bad, and the butt puckering, bless ‘em. I find it very helpful to see what I’m getting myself into.

    Twisty, thanks for being heroically and bravely you.

  24. Antoinette Niebieszczanski

    “I, on the other hand, am still convinced that I’m going to die of it, and I’ve had clear scans for 4 years. Cancer’s no journey. It’s a fucking awful disease.”

    Right on. From the moment they take you into the Bad News Room until you’re planted or reduced to ash. If given the choice between reliving the last 3 weeks of my mother’s life prior to her death of colo-rectal cancer and cutting off my right arm with a dull, rusty saw, I’d say hand me the saw.

  25. B. Dagger Lee

    The framework of victim/winner/loser comes out of magical thinking at its essence: something bad happened because I’m bad; something good happened because I’m good.

    It’s the woo-woo ideological leg of the patriarchy.

  26. nails

    Working in bone marrow transplant units is enough evidence that it has fuckall to do with fighting anything, everyone there hurts severely and barely makes it through no matter what they are like. It is hard to fight something when you are sedated and your crit is below 20%. Not to mention, even if the people in BMT make it through, almost no one makes it to having a complication free life.

    What I don’t understand is why the pink ribbon programs don’t encourage women to get into science; it is a whole half of the population that is for the most part not utilized in helping medical technology. A big population of female scientists helps things progress and cuts out a lot the patriarchal bullshit. I feel a deep sadness when I think of all the female/people of color/lower class human beings who could have made breakthroughs like darwin or newton if they had simply had the chance to learn the material. I have no doubt that the world would be a much better place if that was really available to everyone equally.

  27. goblinbee

    Julia: “…so I’m not basing my decision on anything other than personal preference and experimentation…”

    Or so men would have you believe.

  28. Jill

    Hey goblinbee, Julia’s got fucking cancer. She can have it however she wants on this blog, without having to run the radfem gauntlet, and that includes claiming personal choice.

  29. Agasaya

    Let’s remember that breasts are part of our anatomy – organs like any other and amputation is a loss to the self. We can’t just define breasts by male standards. Yes, if we define mastectomy as a “maiming” solely because of the attendant loss of male attention/attraction, then we have a problem in conditioning.
    It still remains a great loss without regard to teh men. And let’s face it- not too much ought to depend upon teh men.

    Kudos to the blamer who spoke of women going into science. We all had better fucking get into science as consumers. The odds of getting cancer for both men and women are huge simply because consumers in this country are equivalent to pigeons ready for plucking, roasting and eating – all the while paying for the meal ourselves. If you have any grasp of the biochemistry involved in your contact with everyday products (seen and unseen), you’d realize just how deeply the corporations need us to remain ignorant. Women bear the brunt of the other fun diseases resulting from the perversion of economics, particularly in the degenerative autoimmune categories such as MS, lupus etc.

    Genetics means little in the incidence lottery.

  30. azzy23

    I always thought I’d go the recon route if I got the cancer too, without any real analysis.

    Having just had surgery for thyroid cancer, then the ER visits for complications, then the radiation and quarantine, then the endless blood draws, the additional specialists for all the fun side effects, the etc etc etc – I was thinking about how high my chances of getting breast cancer were and I suddenly realized there’s just NO WAY I’d get a breast constructed. It’s absolute hell getting treatment for this disease, and I didn’t even have one of the really bad ones!

    As a comment to the “fighter” idea, I absolutely detest that claptrap. I didn’t win anything. I’m not waging a battle. I have a chronic disease that requires treatment. People die from a bad case of flu but we don’t have marathons to raise money for NyQuil.

    Thanks for sharing Julia! While I get all in-to-out looking at surgical pictures, I have long wished women who have survived cancer, and who live with cancer, would show the un-romanticized truth to the rest of us who don’t know any better.

  31. Julia

    You know, I phrased that wrong, too, maybe. I wasn’t theorizing as to why I would want to try reconstruction on the larger scale, because in my opinion as a non-advanced-blamer it would be amazingly rude of me to come to Jill’s blog (which I do enjoy reading) and put in my two cents on anything like that. This is her blog and it’s for advanced blamers to comment and it says so everywhere. What I meant by what I said was just that I wasn’t taking into account another individual’s opinion like a significant other or family member or anything like that… it’s just me and the cats that are affected by the shape of my chest. I just have to try everything before I know if I like it or not, heh.

    I normally don’t comment here just because I’m not an advanced blamer yet… I just figured since you were lookin’ at the inside of my boobs maybe I’d speak up a bit. I was just glad that Jill shared the link so people can have access to the photos.

  32. Tupe

    Agasaya:

    You’re right. We really can’t get caught in the mindset that if men objectify something, a “good” feminist can’t like it too. Obviously, that would mean not liking our entire body.

    If a woman likes having her breasts and she has to have them removed and then decides: “Fuck it, I’m gonna get some kind of replacement back on my chest cause I kinda miss the old ones” — leave her alone. Even if it is a really bad impersonation of a real breast — whose real breasts fit the beauty standard anyway?

  33. Jill

    I normally don’t comment here just because I’m not an advanced blamer yet… I just figured since you were lookin’ at the inside of my boobs maybe I’d speak up a bit.

    And I’m glad you have spoken up a bit. Feel free to speak up a bit anytime. We can get somewhat doctrinaire here on Savage Death Island, but as far as I’m concerned, anyone who posts photos of their personal cancer boob surgery on the internet is automatically an Advanced Blamer. If you ever feel like it, I’d be really interested to hear your take on what all this shit will mean for your career as a stripper and pin-up model.

  34. Julia

    Hah, I’m not sure ‘career’ is the right word for when I strip. It’s just a job. I’ve had a *lot* of different jobs in my lifetime so far, and it’s been my personal experience that I enjoy doing “physical” jobs for money as opposed to the thinkin’ sort. I like to go to work and do my job and then go home and do the things I do for fun without taking my work shit home with me, and physical jobs are good for that. Logging (for an environmentally concerned company… salvaging bug kill areas, mostly) and construction were my favorites before lupus and arthritis set in and then I tried stripping when my boss at the graphic design company started stealing my work. I said “I’d rather show my vagina to strangers for money than work for you.” and it turns out I meant it, heh. The only reason I’m offering the back story is I don’t want anyone to think I feel passionately about stripping or think it’s somehow empowering or enslaving or any other thing that is too big for one job to be… it’s just a gig for cash, and any gig for cash (I think) depends on what you put into it and what you expect out of it. Certainly there are strippers for whom it’s a “lifestyle” and not a “job”, but that wasn’t me. For me, I would show up, dance around in my underpants and docs to music that I enjoy (in three minute intervals since I mixed the CDs myself), hang at the bar with people I didn’t hate, tip the bartender, and go home. Sure there are lots of things I’m probably qualified to do that rely on other skills that people tend to think more highly of, but I enjoyed that job and it fit in well with my particular health issues.

    I most certainly do not think it’s an appropriate job for anyone who needs to have people admire their physical appearance to validate themselves or anyone who gives the tiniest rat’s ass what other people think of them. I respect the opinion of people that I respect, end of story. If Joe Asshole thinks I’m too short/fat/snarky/tattooed/etc. and that’s going to bother me, I should never, ever strip. So, I don’t think it’s a good job for everybody.

    Also I think people get a “stripclub” idea in their head and that’s all they think of about stripping… the clubs I worked at were small and had such a wide variety of women and customers that it really didn’t resemble what you see in the media at all. Dancers were of all ages and shapes and personalities and customers were all neighborhood locals, men and women, usually just looking to visit with someone who was only going to pay attention to them for ten minutes at a time and not try to work their own problems into the conversation. I didn’t do “lap dances” or “special massages” or anything that you see in the “VIP room” in a stripper movie.

    So, with that out of the way… I probably will strip again after my reconstruction is finished, but it wouldn’t have been needed in order for me to go back to it here. Here I could have stripped with no boobs whatsoever and just a big flat tattoo on my chest if I wanted (and I might in five years, who knows?). Right now I don’t feel like it because I’m so amazingly worn out, but I still hang out with a lot of girls from work and I miss dancing around in my underpants with more company than the cats (who don’t really appreciate it at all). I enjoy planning ensembles to wear and putting together songs that I like and pole dancing is actually really fun (to me)… it’s kind of like playing on a jungle gym, except with ball bearings. I even like wearing six inch heels, but that could be because the bones in my feet are misshapen because of the lupus and arthritis and the shape of those shoes is more comfortable to me than “flat” shoes or even the expensive inserts I tried to work with for years in my walking shoes.

    Wow, so rambly. Sorry. Lots of drugs, still, heh. IV Benedryl and narcolepsy are not a good mix… or too good of a mix. Short version, I’ll probably strip again when they’re done with the surgery, but just because I wouldn’t want to take time off for surgery in between… if I felt up to it they’d let me strip now, the way the clubs are here. I’d have to be less tired, probably. Maybe not… once I got paid just to nap on the stage, heh.

    Oh, and pin-up art… I never really made a decent living from that, I just enjoyed doing it. This is really non-advanced-blaming, but I like to get “dolled up” and take pictures. It makes me happy even if nobody sees it or likes it but me. I especially like vintage-style dolling up, and historical dolling up although there wasn’t pin-up photography then. So, I’m sure I’ll go back to that as well when I have more energy. I wish I’d taken more photos flat-chested, though… that looked really good (in my opinion). I never really got to wear anything “boyish” or swashbucklery (that’s totally a word) as a teenager due to my huge bazoombas, and I did a lot of that before they put in the expanders. I’ll wear more of it again when I’m done playing around with the implants, I’m sure.

    On a side note, I’d also like to think that I’m allowed to like things even if men like them. I mean, men have spent a lot of time trying to get at my vagina, for example, so I assume that they like it… but I kind of like it, too. Maybe a lot. Maybe I like it multiple times a day, and no men are involved. Women used to sometimes come into the club and tell me that I ought not to strip because it was demeaning to them and lowering myself, and I used to think that them telling me not to do something I was enjoying would be as bad as “the man” telling me I ought to do something I didn’t enjoy, and I think that not liking something on purpose just because men like it would be kind of like that.

  35. Bird

    My mother died of a brain tumour six months ago, seven years after her diagnosis. Sometimes I have nightmares about it. Was she brave? Yeah, because it takes a lot of goddamn courage to do shit like go through surgery awake so that they don’t cut out the wrong part of your brain. But the whole warm-and-fuzzy cancer warrior thing is a massive fucking lie, and I’m glad there’s at least one corner of the internet where a woman is telling her real story.

  36. pheenobarbidoll

    “”with the above photo is to wait until some jackass on the internet is pestering me about whether or not I’m a “real live girl” and what I look like or what I’m wearing and whether or not I’m single… and then ask him if he “wants to see a picture of my boob”…”"

    Awesome.

    Plain and simple.

  37. preying mantis

    “I always thought I’d go the recon route if I got the cancer too, without any real analysis.”

    I always thought I’d get fakes in the event of a mastectomy because I really, really, really like my boobs. Then I found out that reconstructions aren’t usually much at all like home-growns, never mind my individual odds of getting reconstructed breasts that bear even a passing resemblance to my original breasts. No way in hell I’d get it done now.

  38. Julia

    You know, these “reconstructed” breasts are not going to resemble my original breasts, but they’re not even done yet and there are some things that I enjoy about them. For one thing, and I know this will probably horrify some of you, I always wanted to be able to twirl tassel pasties. Not to show off to anyone, it just always looked so fun… I would have loved to be able to twirl them even if nobody ever saw it but me. It kind of seemed like being able to hula-hoop with your boobs. So, I tried it. A lot. I found women that could twirl tassel pasties and asked them what they did, and they tried to teach me exercises to isolate my chest muscles but I never managed to figure it out. I could move each breast a little bit, but either I couldn’t identify the right muscles for proper twirling technique or maybe my boobs were just too big or the wrong shape or something for twirling. Well, nothing makes you aware of individual chest muscles like having a big old pocket cut in the middle of them and sticking what is basically a stress ball in there. I started out flexing those muscles involuntarily after surgery, but eventually working on relaxing and isolating those muscles gave me an awareness and control over them that I never had before. In retrospect I realize that most of the women I’ve met that could move their breasts in any specific way had some kind of surgery (either augmentation or reconstruction or reduction). Even if I’d never wanted to twirl tassels I think I would appreciate this new awareness of the muscles in my chest. Flexing them feels good… I’ve never done serious weight training and I’ve never actually had a well-defined muscle I could flex with results I could feel so clearly. It inspired me to do different exercises and weight training for muscles in other parts of my body.

    Another thing I already appreciate about reconstruction is how much it hurt. It may sound odd to appreciate that, but I have a ridiculously high pain tolerance level. I broke my foot once and didn’t even know… it healed totally wrong as a result. I had a piece of metal embedded in my eye for ten days without knowing it… when I went to the hospital for the headache finally (just because I thought it odd that the slight headache never went away) they said it was developing a rust ring. So, it was really novel to actually feel what I would term agonizing pain. I think it made me appreciate the times that I don’t hurt, and I think it’s nice to know that you *can* hurt.

    It’s not my job to research all of this stuff and I’m certainly not representative of all women, but I’m also kind of thankful that I’m working on this project and willing to write my honest opinion so there will be some record of “my reconstruction was like this” from a standpoint that isn’t 100% pro or con. I think people should research things as thoroughly as possible before they decide on major medical decisions and if I can present my experience in a way that might help another woman make her own decision (whatever she decides) then that’s another reason to be glad I at least tried reconstruction.

    So… even though they’re not boobs and they’re not going to resemble the boobs I had, I’m already appreciating some things about the implants and they’re not even done. I’m glad I’m trying them. Right now I still don’t like them more than I liked being flat chested, but like I said earlier I’m tired and achy and cranky right now so it’s not a fair comparison.

  39. Julia

    If anyone’s interested, I finally posted my piece on how weight gain happens with a lot of treatments and how it frustrates me that people support their friends through other side effects and this one just gets politely avoided. The wall of opinionated text is in my journal section, but there are photos (and a link to the wall of text) in the photo section. I really didn’t want to post huge rolls of back fat photos of myself on the internet, but I also don’t want women sitting at home thinking that they’re the only ones that gained so much weird weight with their treatments and it’s somehow their fault and it will go away if they just eat more salad. Bleargh, I hate huge rolls of back fat photos, heh.

  40. Agasaya

    Obesity is now linked in girls to pthalates, the chemicals in plastics and serving as preservatives in just about everything, responsible for introducing more estrogen into all of us. They cause male infertility which is basically the main complaint in science these days so gets most of the research dollars. More enlightened researchers have linked it to earlier menarch, later menopause and a plausible reason for increased cancer rates in women who don’t elect to take HRT. Let’s not discount all the steroids given to reduce inflammatory responses to various conditions and meds.

    But it’s still all that self-indulgence. You know, those two hundred calories you choke down daily while on chemo.

  41. Julia

    Yeah, I’m on two steroids right now… one that I get every week with my IV drugs and one that I take orally daily because my lupus is trying to make my hands fall off (it was all of those jokes about how I was going to get “hand falling off disease” next in my adventure of how the universe wants me not to have employment, heh). Anyhow, despite rigorous, rigorous testing nobody thus far can figure out why only the palms of my hands are blistering, so in the meantime I’m on steroids to reduce the symptoms (I need the palms of my hands). The reason I’m more vague in what I write here and on my site is that it’s so ingrained in women’s heads that weight gain is their own fault that I don’t want someone to see my site and think “I’m not on _____ specific drug, so it’s my fault I’m fat.” when really she might be on some other drug that causes weight gain. I’d rather have the effect of someone seeing my site, recognizing the same patterns of weight gain, and then doing their own research and getting help and support from their doctors and friends.

    I only posted those photos this afternoon and already a woman emailed me that she had exactly the same weight gain with her steroids and had showed my photos to her husband and told him to shut up. Steroid weight gain is so… distorted… that it really surprises (and upsets) me that a friend or family member could even mistake it for any kind of natural weight gain and nag someone about it.

    They show “big, beautiful” women in the media all the time, but these women are naturally larger and are proportionate and have “good skin” and a bunch of other stuff that women who are overweight because of medical treatment can’t (and shouldn’t) compare themselves to. I don’t really like putting disproportionate, lumpy, beer-belly topless photos of myself on the internet, but yeah… if I can keep someone from thinking they need to starve and run themselves to death while they’re trying to deal with harsh chemical treatments I guess I’m okay with it.

    If my lap gets any smaller the cats are gonna start sitting on my head, though.

  42. Jill

    When I was on steroids during chemo I gained 30 pounds. I had to get a couple of links put in my watch band. My big, bald, eyebrowless head swole up to about the size of Guam. My chemo nurse called it “moonface.” It’s weird to gain weight when you’re not eating anything. I had to smoke a bunch of weed just so I could eat a popsicle.

  43. Julia

    My rheumatologist calls it moonface as well. I guess it happens with most steroids. I hate moonface.

  44. Agasaya

    Julia,

    Autoimmune problems are common in women with implants so please research the kind you are receiving to ensure they aren’t of that nature. Lupus is a very tough condition as you well know, so check with an expert about what all is being introduced to your body while you can still alter the formula, method or other cause for your new symptoms. Beating cancer but ratcheting up the lupus isn’t your goal.

    Testing for regular allergies won’t often provide the answers but if skin is sloughing off of your hands, there has to be a simple explanation in things you are handling. Write me if you want to discuss this further.

  45. nails

    Agasaya- what kind of training do you have to be able to say that there has to be a simple explanation of the skin sloughing?

  46. Julia

    Actually, I visited your site earlier because I was going to grab your email and try to discuss some other things with you, but I wasn’t observant enough to find an address or method of contact other than leaving a public comment. I’m on a ton of drugs right now, so maybe it was there and I just didn’t see it? Maybe you could drop me a line when you have time, it’s just Julia at CancerVacation.com.

    Briefly, though, I am aware that there can be issues with implants and autoimmune disease and have been involving my rheumatologist in every step of my cancer treatment. He’s an amazing, amazing person and cares about his patients so much; I know I wouldn’t have gotten the treatment I’ve had thus far without his help. When I found my lump even though breasts were not his specialty he insisted that I see him that morning (I was just seeing if he would order me a mammogram) and when he saw the lump he got me a mammogram, ultrasound, and biopsy all that day. When I called him with my fears about how no surgeon was available to consult with me for a week or two he pulled doctor strings to get me in with the hospital’s head of surgery that same day after hours. He goes out of his way to make sure he knows what’s going on in all aspects of his patients’ lives since pretty much everything affects an autoimmune disease. Of course there’s still a risk that just about anything will set off lupus, but so far everything about the implants seems to be agreeable.

    Also, the skin on my hands isn’t sloughing off… it’s blistering from underneath my palms. It’s freaky. It looks like some kind of medieval religious punishment for masturbating too much. The blisters are *all over* the palms of my hands, but they’re so small and the skin on my palms is so thick that they don’t blister through it. They do, however, blister in a solid 2-4mm ribbon around the edge of my palms where the skin transitions into the normal skin that covers the rest of your body. Also, if we don’t medicate it and let it keep blistering, the skin on my palms will separate in spots where groups of the blisters eventually meet. It feels like I washed my hands in fiberglass insulation.

    Obviously it’s a reaction to something, but the timing didn’t coincide with any change in my treatment or anything new in my environment.

  47. Agasaya

    Nails:

    My training is in the health sciences. I write about toxicological issues with no aspirations to diagnose or do more than peer problem solving with those like myself who have been injured by chemicals. Most of us are women; most are misdiagnosed; most are mistreated (in all senses of the word).

    A localized reaction is usually easier to trace than something systemic. However, Julia’s clarification that this appears subdermal, rather than topical, does broaden the field considerably. Julia, I hope your rheumatologist will keep trying to find some explanation for that blistering or someone who can explain it. If you have been in the same environment for a long time though, (where you developed both diseases), you may consider environmental testing if you can afford to do it. I’ll write you.

  48. Urocyon

    Julia, it’s great that you’re writing about weight gain as a side effect of treatment. It’s awful the way we’re encouraged to blame ourselves for drug side effects. My mom simultaneously lost a lot of weight from cancer and developed the weird steroid fat distribution, and felt terrible about her appearance the whole time. I haven’t directly been given a lot of steroids, but was on other medications longterm which raised my own cortisol levels so that I gained 60+ lbs. in the classic steroid distribution (even got diagnosed with Cushing’s). I also got awful stretch marks at 15, starved myself for years, and wound up with diabetes in my 20s–and, of course, got blamed for Not Trying Hard Enough to keep the weight off. I agree, anybody sane should be able to see that the weight gain is unnatural, not that all the value judgments would be appropriate in any case. Thank you for posting your photos–it couldn’t have been easy, with all the victim-blaming!

    Having looked through your piece on it, I would like to add one thing: a lot of the aches and pains you’ve been running into may well be coming from the steroids messing with your connective tissues. That’s another well-known thing they don’t like to admit, but would frequently rather chalk up to “depression” and “anxiety” (probably also coming from the steroids, if you are experiencing any!).

  49. conductress

    Julia: the blisters you’re describing sound similar to pompholyx (or dyshidrotic eczema, but I think pompholyx has a better ring to it). I have pompholyx and get clusters of tiny subdermal blisters on my palms that eventually dry the skin out till it’s… scaley. It typically affects only the hands, but sometimes also the feet. It seems to be a pretty vague condition– it’s usually chalked up to stress and skin allergies, but I’ll be damned if I still haven’t figured out what allergies are causing it in my case– but I thought I’d mention it. Maybe putting a name to it will help you and your docs figure something out.

  50. Jezebella

    That certainly *sounded* like a diagnosis.

  51. beethovenqueen

    hey, maybe preventing breast cancer…

    Very true. I picked up this book for .50 (cents) at a yard sale and wonder why it isn’t a best-seller must-buy for everyone:

    The Breast Cancer Prevention Diet
    by Dr. Bob Arnot

    It’s © is 1998 but it sounds like good advice to me. And at least a place to start. I still wonder how the copy I bought left the Carnegie Library of Pittsburgh, where it could have done a lot of women a lot of good…

  52. beethovenqueen

    btw, great post all way around. Thanks so much to Julia for all of her contributions!

  53. Agasaya

    Conductress,

    The range of reactivity to various things goes far beyond allergy, a very specific immune-mediated form of reaction. Conventional (IgE) allergies are easily measured with a minimum of effort so other forms (IgA, IgG) and non-allergic reactions are often ignored by physicians who don’t want to do the detective work involved in isolating causation.

    This is why women are at such a disadvantage in the doctor’s office. We know when we’re up against discrimination in the workplace, but rarely medically. The AMA admitted some 15 years ago that cardiologists were missing a lot of heart disease in women because (a) women have to complain twice as much of a symptom as men to have them taken seriously and (b) heart disease for women can have different symptoms than show up in men. And hey, you can always determine that a problem is based in the usual hysteria (now called ‘stress’) and hormone excuses men use for ignoring female health problems.

    http://content.nejm.org/cgi/content/extract/329/4/271

    So, don’t rule out other causes apart from allergy. Having a name for a phenomenon makes doctors happy but isn’t the same as knowing whether it is an independent condition or a symptom of something else. You’ll figure it out eventually if you don’t accept the patriarchal (‘sickness = weakness’) and corporate (‘nothing we sell is toxic’) limitations placed upon possible explanations for your problem.

  54. Comrade PhysioProf

    Very true. I picked up this book for .50 (cents) at a yard sale and wonder why it isn’t a best-seller must-buy for everyone:

    The Breast Cancer Prevention Diet
    by Dr. Bob Arnot

    It’s © is 1998 but it sounds like good advice to me. And at least a place to start.

    It’s not. It’s more victim-blaming bullshit: “If only you had eaten correctly, you wouldn’t have breast cancer.” There is no credible evidence that any specific diet can “prevent” breast cancer. The only dietary issues that have been plausibly linked to breast cancer are adiposity and alcohol intake.

  55. Julia

    OMG, when I was about a quarter of the way into my herceptin treatment I started having terrible, irregular heartbeats. Well, terrible to me. Apparently they still fell within the medical realm of “normal” although extensive testing proved that they were more rapid and irregular than the heartbeats I’d been having prior to treatment. I had a lot of scans and went to a cardiologist. He sat there, without having listened to me one bit, and stated that because his wife went through chemo he knew exactly what was going on… obviously I had stress/anxiety. I said that that was bullshit and I would know if I had stress, and that emotionally and mentally I felt fine but physically my heart was crippling me if I even tried to walk across the room. We argued back and forth for about ten minutes before I asked what the treatment would be if I had stress and what it would be if I actually had physically damaged my heart such that it didn’t seem very physically different but had an increased and more irregular beat, and he admitted that the drug would be the same (a drug that regulates heart rate). So, I said to give me the drug and I wouldn’t come back and we were both fine with that.

    I insist on scans whenever I feel there’s something wrong and luckily I have a lot of other doctors that are willing to take what I say for the truth. My rheumatologist was outraged when I told him how things went with the cardiologist but as I told him, there’s no not-an-asshole test that people have to take in medical school. People really have to take responsibility for changing doctors and continuing to talk to people if they feel that they’re not getting the medical consideration that they deserve.

  56. Agasaya

    Julia,

    It is also a power and money issue. If he gives you a drug for a psych diagnosis, no one can say he erred in doing so and he still deals with the heart stuff. Any man can say a woman is having psych problems and that is that. They don’t even need an MD to do it.

    If he gives you a drug for a cardiac condition it means he has to go on record that something other than YOU caused some health problem he is treating. That means he takes responsibility for backing up that assertion if the drug is challenged by the FDA, if you sue for heart damage or a relative does later on for wrongful death and so on. If you even ask for a change in treatment from the oncologist, this guy has to consult based upon his findings. Oh, gee, phone calls and justifications have to be made.

    Like Comrade PhysioProf says above – gotta be your fault and therefore under your control. Interesting that the treatment is the same, no? If the cause is different, shouldn’t there be a different intervention? Biofeedback maybe?

    Good on you!

  57. Julia

    Well, it’s misleading for me to say that the drug would have been exactly the same… he would also have preferred me to pursue some form of treatment for the anxiety and stress that he claimed I was suffering from, and I refused. The compromise was to take the drug that only treats the physical side effect and for us to continue to disagree as to the cause. It really makes me so unbelievably flipping mad when people refuse to believe that being ill doesn’t always stress people out. Sure, it can be stressful, but not always. I think having started with kidney failure when I was eight uniquely prepared me (along with all of the other health problems in between) to handle being ill. It’s just a part of my life, like being short or liking video games or something. It doesn’t stress me out to think about all of the other things I can’t do (like fly in a rocketship or poop money or sing) so it’s not going to stress me out that there are some things I can’t do because of illness. That’s probably a ridiculous example, but I like ridiculous examples.

    I think I’m probably a little wrong in the head, but I’m at least content all of the time except for when I’m dealing with pet or animal related emergencies (which is why the otherwise mentioned balloon thing kind of sets me off). Most of the time I’m more than content. Sure, I’m sick and I hurt and I’m beyond poverty stricken right now, but I’m sitting here at a computer with a cat on my lap and a cat next to me and a cat trying to sit on my head and after this there’s a book and a nap waiting for me or maybe a video I haven’t seen for a while and some dresses I could sew or some pictures I could draw or I can go for a walk and pick some blueberries and make a cobbler… there’s a ton of stuff to not be unhappy about.

    So… someday the medical profession will realize that not all people dealing with chronic illness are depressed and/or stressed.

  58. beethovenqueen

    @ Comrade Physio who wrote:

    It’s not. It’s more victim-blaming bullshit:

    Why so caustic? Have you read the book? I don’t think it’s “victim-blaming” at all. It compares the diets of countries with low occurrence of breast cancer, among other things. That makes sense to me. Why not examine all factors when considering cause and prevention rather than “shutting off” and stamping potentially invaluable advice as “bullshit”?

    Obviously there are more factors (genetics, for example!) involved, but I’ve changed my diet and feel better for it.

  59. Julia

    You know, I kept meaning to mention this and kept forgetting… I’m so glad Jill, that you mentioned your weight gain. I know it seems like I’m reasonably minded about these things, but even when I saw your photos I was guilty of thinking, wow, she’s so slender and in shape and I wish my drugs didn’t hit me this hard with the weight gain. I mean, I never look at other women and think that it’s unreasonable that they gained so much weight from their steroids. I know it’s steroid weight and I know I’m not going to be able to do much about it, but I still (in the back of my mind) sometimes will look at other people and think that maybe they didn’t gain so much and it’s possible I couldn’t have gained so much. Really, though, it’s just that people don’t like how they look and feel when they have moonface and back fat (especially how they feel… standing up makes my back feel like trying to bend my knee with a soda pop can behind it) so they don’t post those photos or talk about it that much. So, it even helped me to post those photos, because it pointed out to me that the people I didn’t really think gained a bunch of steroid weight also gained it, heh. It reminds me of the bit from Alice in Wonderland where she says that she gives very good advice but very seldom takes it.

  60. Cathy

    So… someday the medical profession will realize that not all people dealing with chronic illness are depressed and/or stressed.

    That may happen, Julia, but will they ever realize that not all women are depressed, just because the doc can’t figure out what is wrong?

  61. Jill

    I’ve got a half-baked theory — all my theories are half-baked — that all women are depressed, if only because we can’t get anybody to diagnose our actual health issues as anything but depression. And also because we live in a rape culture.

  62. Agasaya

    I’ve got a half-baked theory — all my theories are half-baked — that all women are depressed, if only because we can’t get anybody to diagnose our actual health issues as anything but depression.

    Welcome to my world of activism for women who have been disabled by the toxic effects of chemicals. Nearly all who obtain disability wind up with psych diagnoses such as somatoform disorder. This effectively ends their lives because they remain sick without knowing why; lose the respect of friends, relatives and the public because, of course, they are merely weak females not doing their duty in society. It also means they will quickly lose any work related disability benefits because mental illness isn’t covered by that and a pill ought to get you back into the office quickly if you have the ‘will’ for it. Everyone is happy with the findings because there is no liability other than that of a faulty female attention-seeker. Well, the faulted female isn’t too happy.

    This also allows the patriarchy to make claims that universal health care will only lead to abuses in the overuse of services. They mean women have too many medical problems and need too much attention. Doctors who tend to voice their opinions of this unfairness tend to lose their licenses and spend a lot of time in court defending them before giving up patient advocacy impulses. Let me know if you want more info on this.

    This anecdote is the result of my acquaintance with nearly a thousand individuals (mostly women) all experiencing the same problem over the past ten years. Here is a typical journal article which shows how a physician stumped for answers needs only assess how thick the chart is and make a diagnosis based upon that:

    http://www.bmj.com/cgi/content/extract/325/7359/323

    They published my view of that article in ‘rapid responses’ (Barbara Rubin) just below that text.

  63. Kiuku

    What is causing all of the cancer? They used to say that cancer was always around we can just diagnose it now. But, I don’t think that’s the case. I mean, is it environmental decay? What is it? Atomic testing? I don’t know, but it’s frightening. Of course, focusing on saving breasts and beauty, and not women’s lives, is the focus of “Breast Cancer Awareness.” Otherwise we should herald women who chop them off, so to speak. Otherwise there would be pics of breasts and -babies- not breasts “for men” to jiggle, and “massage”. Disgusting.

  64. KATHY

    JULIE, YOU REALLY HAVE GUTS TO USE THOSE PICTURES. AFTER SEEING THEM I DON’T THINK ANYONE IS GOING SKIP GET MAMMOGRAMS ANYMORE. I NEVER HAD CANCER YET BUT I JUST LOST A SISTER TO OVARIAN CANCER AND LOWER INTESTIAL CANCER, ONE OF THE TOP THREE KILLER CANCERS. CANCER IS NASTY, AND EVEN CHILDREN CAN GET IT AND ANIMALS TOO. ALSO I AM SO SICK OF SEEING PINK THIS AND PINK THAT AND REALLY SICK OF TEAL RIBBONS! WHEN A CANCER SURVIVOR OR ANYONE COMPLAINS OF TUMMY PAIN THEY SHOULD HAVE A COMPLETE COLON-UP-SEE DONE WHEN THEY THINK THERE MAY BE CANCER THERE AND DO NOT LET ANY DOCTOR TALK YOU OUT OF IT! I REALLY THINK MY SISTER HAD COLON CANCER TOO THE SAME TIME AS HER OVARIAN CANCER. DOCTORS NEED TO REMEMBER THAT THEIR PATIENTS ARE THE ONES WHO PAY THEIR SALARY AFTER THEIR APPOINTMENTS!

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