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May 14 2007

I said who put all those things in your head

Susan Mitchell, writing in Salon on the oft-smirked-at phenomenon of ‘chemo-brain’, describes it nicely. Memory holes, addled wits, the “quite frequent inability to name common objects [...] : ‘Book.’ ‘Envelope.’ ‘Cup.’”

And when I say she describes it nicely, I mean she is nice about it. She betrays little sense of outrage or crapulence when she admits that her oncologist “has difficulty getting too worked up about my forgetfulness.” She is even nice when running down the checklist of all the other conditions wrought by chemo et al: neuropathy, stubborn weight gain, hot flashes, excruciating joint pain, the fact that her ‘reconstructed’ globular unit is no substitute for an actual boob.

In fact, she says a couple of times how grateful she is. She says it’s “hard to complain” because after all, she notes, she’s not dead. She was “lucky” to have had the “great surgeon” who stitched together — probably using fat from a foot-long incision in her abdomen — the macabre lump of feminine acquiescence on her chest. It is only after explaining how lucky and grateful and understanding she is of her oncologist’s insouciance that she gets a little cranky. She says she wishes for her old self back.

The point of her piece, of course, is not to cut loose about her bloody fucking awful post-chemo condition. She means to suggest the need for a new field of medicine that would treat the symptoms of the treatment.*

The point of my piece, however, is to complain. Complaining is not virtuous, I realize. In fact, thanks to the corporate breast cancer mascot — the plucky, pinkified Breast Cancer Survivor (TM) who’s popularized the insane idea that women embrace the disease as an opportunity for personal growth — there is nothing in this world so unpleasant as a breast cancer sufferer who

– isn’t grateful
– doesn’t feel lucky
– won’t suffer nobly in silence
– thinks all those pious pink volunterrorists are deluded
– believes that the pseudo-concerned Racers-for-the-Cure luxuriate at her expense in a false sense of meaningless “philanthropy”
– is hopping mad over the expectation that she pretend she still has tits
– is even hopping-madder over the expectation that she shut the fuck up

I’m even hopping madder that I find myself capitulating. “So how’re you doing?” people ask me, and I almost always answer that I’m doing “great.” Because it would seem so ungracious to answer any other way. I mean, since after all I’m not dead and wouldn’t it be greedy and ungrateful of me to expect more than that?

Well, I’m puttin’ the kibosh on that bogus shit right now.

This is what it’s like to “survive” breast cancer treatment: you feel, every goddam day, like something that oozed from a rotting log after an acid rain. I mean, every goddam day you experience everything on this list:

– markedly decreased mental acuity that your friends laugh off because they don’t understand it’s not just garden-variety where-did-I-put-my-keys, but is in fact a substantial and debilitating hit in the old IQ (in fact, it’s really dementia, but you can’t bring yourself to call it that because a) you’re only 48, and b) you can’t remember the goddam word anyway)
– crippling joint pain
– either diarrhea or constipation but never neither and you never know which
– dizziness
– depression
– episodic weeping
– insomnia
– hourly hot flashes
– the ‘aura’ of utter despair that precedes, and is substantially more discomfiting than, the hourly hot flashes
– a sense of general debility
– extreme fatigue
– pain and peeling skin on the radiation site
– a flappy, post-hysterectomy bladder
– anxiety that the next scan will reveal a recurrence
– numbness and pain from the center of your chest to your elbow
– the constant sensation, from your dual 7″ scars, that you’re wearing a bra two sizes too small
– a crushing sense of futility
– fear of imminent death

Nothing’s gonna fix all that shit. And let’s face it; socially, it’s just a big pile of stay-away-you-repulse-me. Even I find it repulsive. If I were you, I wouldn’t be touching this blog post with a ten-foot pole.

I suspect that’s why Susan Mitchell feels obliged to so agreeably acknowledge her indebtedness to the wonders of medical science. It’s impolite to have cancer. It’s even more impoliter, when, a year or so after your last treatment and you’re still not dead, someone asks you “so how are you feeling“, and you go, “Well, Chet, my post-cancer-treatment life is actually a waking nightmare.”

A waking nightmare may be somewhat preferable to death, but only just. It’s definitely not a fucking cure, and I’m done pretending to be grateful for it.

UPDATE: Here’s a list of 10 remarks that are guaranteed to insult the cancer patient. [Thanks, Carol.]

__________________________
* I sympathize with Mitchell’s call for a branch of medicine focused on fixing the diseases they give you when they’re curing you, but after 2 years enmeshed in the medicorporatocracy, I’m pretty sure that any “therapy” they could come up with to treat FLS (Feels Like Shit) would probably turn you into a bald zombie with hemorrhaging eyeballs.

137 comments

2 pings

  1. Spinning Liz

    You know it’s funny, every single time I read one of your posts I think, damn her, how come she didn’t get chemo brain, she still has her fucking edge. While my brain has gone as blunt and squishy as a giant sea sponge. Plus my fingers are so numb I can’t type worth shit, and four days out of five I forget that I even have a stupid blog to update.

    Anyway, add to your list of woes, at least for those of us with less than complete insurance coverage, the post-cancer financial disaster scenario. I’ve not only lost my income, I’ve lost my entire life savings, plus my house. And even though I’ll never ever again be eligible for affordable private health insurance, I still don’t qualify for any kind of government aid. I’ve fallen through every crack in the system. Yet somehow everybody expects that I should be bouncing “back to normal” by now. Well, maybe I’m not dead but any chance in hell of ever being “normal” again sure is.

    As for capitulating, it’s only lunch time and already today I’ve chirped to seven people that I’m doing GREAT!

  2. MedeaOnCrack

    Is there anything that could at least take you away from this list, for a few moments each day without knocking you out? Ecstasy, heroin. I’m serious. I think estrogen and the rest of the hormones we lose at menopause cause a lot of problems, and you had to jump over a cliff not ease into it as the rest of us did and will do. Apart from your cancer treatments and meds, I don’t know if it gets better after awhile, after your body adjusts to the menopause shock and at least that is gone.

  3. B. Dagger Lee

    That fucking sucks. I like this poem by Robert Creeley at moments of extreme suckage.

    “I Know a Man

    As I sd to my
    friend, because I am
    always talking, — John, I

    sd, which was not his
    name, the darkness sur-
    rounds us, what

    can we do against
    it, or else, shall we &
    why not, buy a goddamn big car,

    drive, he sd, for
    christ’s sake, look
    out where yr going.”

  4. LMYC

    Fuck it all, cancer sucks. I’m sick of reading and hearing about friends of mine having body parts lopped off, and I’m sick of worrying about whether any of my own are going fetid right this very today and aren’t out to kill me.

    I’m terrified of the idea of losing my acuity, because honestly, it’s all I’ve got that makes life any damned fun. The day I open a foreign language grammar withouth being able to follow it for more than seven seconds is the day that I just don’t know what the hell I’ll do or how I’ll react.

    The fact that I’d be expected to go “I’m doing great” in the face of this to keep my shit out of other people’s way makes me nauseated.

    Jesus people, don’t ask the question “how’s it going?” if you can’t tolerate the answer. If you MUST say SOMETHING, just express sympathy, or say, “I hope things are better than the last time we ran into one another.” Or something. Anything. I don’t know. I mean, this is fucking cancer we’re talking about. I think everything is on the “Don’t Say That” list. THe only thing on the “Do Say That” list is, “I’ve discovered a cure.”

  5. S.

    I think we need to update “How are you doing?” Wouldn’t it be more honest if we had a social nicety that asked:

    “Do you need to vent to me about the sucky thing you’re going through?”

    Then we could say “yes” or “no” and be honest.

    Twisty, vent away. And I’m with you on the need to take care of the fallout from the medical system outside the medical system.

  6. Cass

    It was made worse for my sister-in-law by the fact that they promised her beforehand the anti-pain drugs would make it all better. They didn’t, but when she told them so, they refused to believe her.

  7. hedonistic

    Sniff. Chocolate? Bunnies? Fluffy clouds? A hug?

    Have any of your doctors mentioned anything about post-surgery depression?

    http://www.med.umich.edu/depression/condition.htm

    It happens a LOT. Depression with cancer, AND depression with surgery. Since you’ve had both, I’d be surprised if you didn’t have CLINICAL depression, not just “the blues.”

    Something about f-ed up neurotransmitters. It’s all very confusing but apparently they need each other and if just one is “off” it can cause a brain avalanche. A handful of sex hormones (progesterine being one of them) synthesize in the brain and can negatively affect GABA and serotonin levels. Since many (all?) of your sex hormones recently went on a permanent vacation with your ovaries I wouldn’t be surprised if your hysterectormy is at least partially to blame. Low serotonin levels result in the very things you describe on your list (except the flappy bladder and the bra size).

    I’m of the very strong opinion that (my Calvinist upbringing notwithstanding), this condition can’t be cured with a stiff upper lip,’cause your brain ain’t minding the store, you see? When my serotonin levels tank I feel a LOT like your list, even though I have no REASON to feel that way. YOU have a damn good reason to feel that way, and to explore the possibility of an SSRI if it fits into your belief system. I know without my Zoloft I’d either be in jail or dead by now.

  8. Trout

    Twisty, I’m sorry you’re feeling so bad today. Cancer sucks. I wish I could help.

  9. tinfoil hattie

    Twisty, there ain’t nothing good or ennobling about cancer. Fuck it all. Gee, would you have been a BAD PERSON if only you hadn’t gotten CANCER????

    I’m sorry. I’m really, really sorry, and I wish there were something, ANYTHING, to make this shit better.

    And I prefer your approach — for god’s sake, how can we ever be expected to find better and more effective cancer treatments, with fewer horrific side effects, if every cancer “survivor” is doing “great, just great!”?

    And BDL, that is absolutely one of my all-time favorite poems.

    P.S. Twisty, I hesitantly second hedonist’s input — hesitantly because I know you get enough medical “advice” thrust at you, but I will say my Wellbutrin & Lexapro have saved my life.

    And by the way, do you also know you are a walking case of PTSD? (I recognize the symptoms.) Maybe treating the PTSD will help.

  10. hedonistic

    I meant progesterone, not progesterine!!!! Stupid fingers.

  11. zz

    I’m sitting here waiting for my Onc to call and tell me the results of my latest breast MRI. Every time my cell phone rings I jump like a god damn cat on a hot tin roof. This post couldn’t have come at a better time. As always, thanks for calling “bullshit” when and where it’s needed.

  12. brklyngrl

    Good for you. I mean it. The expectation that sick and dying women should continue to take care of others by not letting conversations about cancer become socially awkward or emotionally painful is ridiculous.

  13. teffie-phd

    My dad is in the end stages of colon cancer and even he talk about the heroism of breast cancern survivors. How they have it worse than him, how it’s harder etc.

    I want to scream at him for it because from where I stand it’s not about who is more virtuous but about how the disease and treatment are completely fucked up. How they hurt the person with cancer and all their close family and friends.

    I’m sorry to hear that in a way having cancer never goes away. I sort of figured it didn’t and you voice my own rage in far better ways than I can. Thanks.

  14. arlene

    Sorry to read that you’re having a rough day. You’re right of course, you should never pretend. Or ever have to pretend.

  15. ekf

    Twisty, your anger and bullshit-calling is a shitload more inspriring a cancer survival story than any pink-ribboned KitchenAid mixer. I’m sorry I can’t be of help, but I send you a metaphorical taco of admiration from afar nonetheless.

  16. curiousgyrl

    Thanks for this post! you and barbara e are about the only two I’ve seen who tell the truth about cancer, which for someone who watched a parent go throught this for 10 formative years, I can say, is very related to telling the truth about life.

    Twisty, I’m glad you’re with us.

  17. RadFemHedonist

    “Do you need to vent to me about the sucky thing you’re going through?”

    I really want to start using that one, it would make things so much better for everyone if you could simply say how crap things were, and not have people ask you questions relating to your cancer with the presumption that you will say:

    everything is fantastic! why if only I’d smoked and drunk more and had a more stress inducing job I could have got this disease and had an amazing period of personal growth even sooner!

    “And I prefer your approach — for god’s sake, how can we ever be expected to find better and more effective cancer treatments, with fewer horrific side effects, if every cancer “survivor” is doing “great, just great!”?”

    I really agree with this, everyone should complain at the scientists until the treatments cure you completely, no more settling for waking nightmares.

    I’ll go make a placard…

  18. ginmar

    Jesus, Twisty, did you ever hit it on the head. You’re supposed to be brave so other people don’t have to. You’re supposed to suffer so other people are spared your suffering. You’re still a woman, and that means you’re supposed to exist through and FOR other people, silly! You’re supposed to soothe others’ pain. Well, fuck that shit. Friends are the ones who you can bitch to when you’re getting chemo.

    I have to say, I lost a lot of friends when I came back from Iraq and I got all depressed. It was just, so, you know, icky. I mean, same thing. Why aren’t you perky and happy and nice, all you have to do is cheer up a little, pet the baby duckies, turn that frown upside down, make lemonade out of those lemons, and just generally puke from the saccharin. Now I know why they take our weapons away. I had and still have a terrible desire to fire warning shots at incoming sappy sentiments.

  19. Ron Sullivan

    Ugh.

    Ouch.

    Yeucch.

    Thanks. Really.

    And Liz, I hear ya. My sister Jeanne fell through those same cracks and it killed her.

  20. Moira

    I get the fatigue and the pain and the goddamned fucking STUPID, but mine’s fibromyalgia and not cancer. It sucks festering dead rat’s ass. I’m really good at hiding when I’m hurting or exhausted, though I can do it only so long. Even when I’m not able to hide it, I’m okay at keeping it from splashing onto people I care about. Most of the time.

    I don’t let many people see the anger. Including me — the anger usually turns into depression and I don’t need more of that.

    The point? I know, sort of, where you’re coming from. I admire your rage. And you have my deepest sympathies about the stupid.

  21. norbizness

    What, the pink breast cancer awareness bats didn’t undo the damage wrought by modern medicine?

    It could be metaphorically worse; a sign mysteriously appeared in my company bathroom with Katie Couric advising me about colorectal cancer by making an impromptu rectangle out of her thumbs and index fingers. I don’t even want to know what that means.

    I will, however, commit to keying the first Eddie Bauer Special Edition Chevy Tahoe with a pink ribbon parked on SoCo the first chance I get.

  22. delphyne

    Not being able to be honest about how hellish cancer is – that’s hellish in itself. What you say about it doesn’t sound repulsive, it sounds real.

  23. marachne

    What burns my butt is how long the fight was to even have the medical establishment acknowledge that there are a multitude of symptoms r/t to cancer treatment. If I can toot my profession’s horn, it was nurse-researchers (in particular Lilian Nail,http://www.ohsu.edu/crsmlti/bio_lillian.html, who is also a 3x cancer survivor) who really pushed to have the phenomena recognized. The latest things are: looking at symptom clusters and looking, at a molecular level, at the process — the latest theory is that at least some of it is related to the inflammatory process that happens when we get a cold, but it just doesn’t shut off.

    I’m sorry you feel like crap. I’m sorry that most people who go through cancer treatment aren’t given an honest description of the side effects and how long they last. As so many others have said, vent away.

  24. smmo

    I watched a baseball game yesterday and was annoyed by the pink bats etc. on your behalf, Twisty. Your blog is so damned thoughtful, brilliant and entertaining I wish I could offer more than “that sucks” in return. That sucks. Fuck cancer and the sparkly pink horse it rode in on.

  25. 100 Words

    I recently lost a friend to cancer. He couldn’t wait to go, truth be told, though it took him a long time to admit it. He would have approved of this post, I think.

  26. Bird

    I’ll never forget my mother giving in and wearing a wig because she was tired of people recoiling from seeing her head. She has scars on her scalp from her three brain surgeries, and her hair is permanently gone over half her head because of the radiation (permanently killed the hair follicles). The people who looked the most freaked out weren’t strangers—they were people at her church and such who knew exactly why she was bald and scarred.

    Sort of like you having to wear a top to the pool, I guess, Twisty. The world wants to love cancer “survivors,” but only if they look noble and brave and the reality is swept tidily under the rug.

    Makes me wish for a nice quick aneurysm, or the intervention of a convenient semi truck, because the shit my mom’s got might be heritable, and that scares the hell out of me.

  27. Hawise

    “Do you need to vent to me about the sucky thing you’re going through?”

    or the more socially acceptable,

    “Want to go for a coffee and just talk?”

    I’m the go to person for people who need to vent- family is pestering you about the mother’s alzheimers, transplant friends dying because they can’t take the medical routines, burn scars, whatever. I’m not squeamish and I am willing to listen for a question before giving advice.
    Nothing ever got cured that wasn’t complained about first, so vent, bitch and if necessary, whine. We can take it and no one should feel crappy alone.

  28. MedeaOnCrack

    Of course the need for us to be smiling and oh so brave and pretty sufferers is directly related to the fact that the scientists and the scientific establishment is MALE. Just like in rape blaming, put the MEN in there. MEN require us to smile while we die and they build their careers.

  29. MedeaOnCrack

    I have never gotten much out of venting. And I think there are some ill or dying people who do not want to vent. My request would be, can you drive me to the bush/ocean/mountains and come back and get me in three days? I’ll still be ill, but I’ll be me, again.

  30. RadFemHedonist

    “Want to go for a coffee and just talk?”

    Hmm… I had forgotten that, the only problem is if one of you doesn’t like coffee, I suppose you could always say:

    “Want to go to a cafe and talk?”

  31. Silence

    Forget about ‘Take Back the Night.’ Instead, let’s take back the right (if we ever had it to begin with) to say that sometimes life sucks. In fact, most of the time life sucks. Pain sucks, and we usually have to deal with more of it for every year we grow older. Cancer in particular sucks on toast. Everything about it, even surviving it. Why can’t we say so? The only answer I can come up with is that it offends the people who are determined to pretend that life does not suck.

    Well, damn, I’m sorry. Life does mostly suck. We keep plugging away at it because the times that don’t suck are so fucking brilliant we want to try and experience them again. But no one should expect you to be experiencing them every minute of every day. If everyone was really as ‘fine’ as they all claimed, the world would be a much happier place.

    Your cancer sucks, Twisty. Get yourself a non-sucky taco and tell the idiots to fuck off.

  32. hedonistic

    Bird: Funny you should mention that, because that’s precisely the reason I decided to wear a wig. Reactions from people who presumed I was – what? – radioactive? Contagious? What? They literally went out of their way to avoid interacting with me or even meeting my gaze. I wanted to scream at them: I’M NOT DEAD YET! (in a Cockney accent, of course)

    No: Women especially are not to remind people of their own mortality, or how fragile life is. It makes them “uncomfortable.” (as if they know from discomfort!) So SHH. Smile! Wear fake boobs! Fake hair! Full makeup, even if you feel like crap! Wear PINK! Be cheerful!

    It’is just another form of submission: Women OWE the world it’s eye candy, and everyone else’s comfort is more important than ours, no matter what.

    F*ck that.

  33. MzNicky

    She said ‘you don’t understand what I said’
    I said ‘no no no, you’re wrong, when I was’
    going through the shit my own self, Twisty, I created and took in to my doc a chart of symptoms, cross-referenced and ranked by heinousness, that included most of the things on your list. My own chemo-brain, hormone-deprived, raging weeping maniac phase occurred right around 9/11, and such was my grief, despair, and anger that one night the week after I found myself “rearranging” the kitchen cabinets by prying them off the wall with a crowbar. I remember being in a sweaty weepy heap on the floor about an hour later, thinking that it seemed like a good idea at the time and wondering What The Fuck.

    There’s nothing that’s going to make it all go away. Even though you know what you know, here’s what I know that might be of use:

    1) Chemo brain gets better. Truly, it does. Just takes a little time. Although even with chemo brain, you’re still the greatest ass-kicker on the InternetsTubes.

    2) Some antidepressants—perhaps all SSRIs for all I know, but anyway in my case, Zoloft—apparently short-circuit the hot-flash switch in your brain. Also helped tremendously with the mood swings, weepiness, depression.

    3) That tightness sensation in your chest will lessen in time also.

    Wish I had a magic wand to wave over all the rest of it, Twisty dear. Seriously, I remember those dreadful “post-treatment” days. Demand good drugs. Lots of good good drugs. Drink many margaritas. This too shall pass. Jeezus, now I feel like a cross-stitched kitchen plaque.

  34. Sara

    Gad, Twisty, I’m so sorry. Thank you for telling it, though. Thing is, if people don’t tell the truth about their experiences, nothing will ever improve.

    I send people with breast cancer to your site, among others, all the time. I don’t send them to these sites so they can see shining examples of nobility and graciousness, but because you are all honest about your experiences and your feelings about them.

    I’ve always appreciated honesty, but as I age, I grow to cherish it. Spin is the enemy.

  35. Bird

    HPS, as a woman who has intentionally shaved her head, I know the reactions you’re talking about.

    Of course, back then I was a 21-year-old snarly punk-rock type, and the bald head went with my knee-high combat boots, my patched-up military surplus jacket, and all that fun stuff, so the reactions when I was dressed up were pretty predictable (although the tourists who wanted to snap photos of my boyfriend and I at the Quay in North Vancouver were a bit unexpected).

    It was in my work clothes (for a “nice girl” clothing store on Vancouver’s Robson Street) that I got all the stupid reactions, ranging from “Oh! You poor suffering dear!” to the “Look at the freaky dyke in a dress.” I started wearing hats to work to make life simpler.

    Later in my bald career, I was asked by an elderly Italian woman if I was a man or a woman, and then she told me how I was so ugly that no man would ever want me, etc.

    Funny how a woman’s hair becomes everyone else’s business. Now that I’ve grown it long and let it go natural (auburn with a few grey strands coming in), the comments have just changed—they haven’t stopped. And no, you can’t touch it!

  36. LMYC

    Bird, I’m a firm believer that hair should either be buzzed so it doesn’t get in the way, or past one’s ass so you can get it out of the way.

    I get remarks about Why Don’t You Wear It Down More Often? Um, because it’s so damned big and unruly when not bunned that it might quite literally hold up a liquor store when I’m not looking?

  37. Garden Gnome

    Wow, Twisty. All I can say is your chemo-brain is way smarter than my healthy-as-far-as-I-know-brain hands down. Yours is the only blog I read anymore, and I find myself quoting you often.

    Anyway, I just want to echo what everyone else has already said. Cancer sucks, and you should rant all you want.

    Thanks for sharing with us.

  38. Sylvanite

    The most frightening aspect of cancer, it seems to me (other than the fact it’ll kill you if you don’t get right on treating it, and still may kill you even if you do), is that it’s a fundamental betrayal by your own body. Your own body is going rogue and attacking you. Maybe not as literally as with an auto-immune disorder, but to generally deadlier effect.

    Personally, I’ve always thought my breasts a tad disappointing, and have always wondered if they’d betray me someday. Damn traitors.

  39. Jokerine

    Hey, I watched my mom go through breast cancer treatment. I always wondered how much she hid from us. She wanted to get going again really fast.

    I do want to oppose the scientist bashing here for a bit. Yes there are a lot of men in science. But there are also very strong, interested and courageous people(both genders) working to actually make life for humans better. Science doesn’t work with the magic wish. We all want real cures for cancer and a whole host of other diseases, but that takes a whole lot of work. Currently it isn’t even clear why and how cancer forms, what the crucial steps are to stop it from forming. This of course makes it unbelievably difficult to find a cure.

    What we can do is change our (american) culture so people that hurt can say so. And if you feel underinformed, well I can try to find the answers you want, or another scientist. We are out there, we are people, talk to us!

  40. Bird

    LMYC, I’m glad to know I’m not the only blamer with hair that is only tamed by being contained firmly and mercilessly in a bun/braid. I’m always afraid that it will start assimilating random objects/passersby if I leave it to its own devices. But it’s completely wash-and-wear and much warmer in a prairie winter than a bald scalp (as I learned over a winter in Winnipeg a few years back).

    Sorry, I think I’ve completely drifted off the topic now.

  41. TP

    The first time I asked you if you were feeling OK, you shouted out “I’m not dead!” at me, and I was stunned into silence. You were trying to say everything you say in this post in one quick phrase. And I heard – or felt – a lot of it right then, but had to process it and still keep on talking.

    You still rock, Twisty. A Twisty Faster reduced by science and cancer is still a being to be reckoned with on every level.

    You carry yourself with such relaxed and unapologetic grace that I thought the booblessness almost flattering, considering what traitors they turned out to be. Several times I wondered how anyone could have found you disturbing, like the country club women.

    You look really healthy and strong, even though I could easily tell you still suffer. You glow with an internal fire that is undimmed.

  42. badkitty

    Hear, hear! Another “survivor” de-lurking to agree with the general suckiness of it all. No one tells you how crappy you are going to feel after treatment or how long you’re going to feel crappy. Everyone just pats you on the head and says, “all better!” and expects you to go back to your old merry self. Not that I was ever very merry to start with. I don’t know if they put you on tamoxifen, but let me say with great authority: IT SUCKS.

    Some days it just irks me to no end that of all the cancers I could have gotten, I had to get the trendy pink-ribbons and teddy bears cancer. On top of all the horrific medical BS I had to go through, couldn’t I at least be left with a little effin’ dignity? I was at the garden center with my partner last night and she burst out laughing and pointed to a bag of potting soil. Yes, even potting soil comes in a pretty pink bag with the ubiquitous Komen Foundation logo.

  43. The Hedonistic Pleasureseeker

    MzNicky, I never pried anything off my walls when I was on my Hamster Wheel of Grief. That’s what I called it when my brain would fixate on something bad and go round and round with it and I couldn’t even change the subject on myself. Rather, my tendency was to frantically organize everything by color and go buy more of those things in every frickin color that I didn’t have because I had to have them EVERY SINGLE COLOR because the world would end if I needed something and I didn’t have it in the right color!!!!!!! Dayum, you should see the shit in my house. I don’t even remember buying half of it.

    Oh, and twice I was so depressed I scheduled and paid for plastic surgery. Once with a credit card.

    Can I BTP?

  44. lawbitch

    Twisty, I’m sorry that everything sucks so bad right now. I hope that it gets better soon. I hope that drugs help. Give us the honest truth about how you’re feeling, though, so that we can be supportive. Sending healing thoughts your way. Wish that I could do more. Lobby against those damn ridiculous pink bats, maybe?

  45. Jessant

    I use to read all these books about women suffering from various diseases when I was in elementary school and high-school…For some reason both libraries were well stocked with the adventures of young women wasting away from some disease…Looking back it was all very disturbing. All the patients were YOUNG most importantly, beautiful, and rarely showed physical signs of the disease. In one memorable book, the patient was told to imagine her cancer being zapped away by benevolent angel type creatures, as if you could use the power of your mind to destroy cancer. What I’m trying to say is this kind of thinking is something we were indoctrinated into early, especially women. None of the ‘wasting away from illnesses genre’ was ever marketed toward men. They want us to suffer beautifully if that makes any sense. It’s sick and twisted and most definitely a form of sadism. Who cares if your dying, the books seem to say, as long as you look good doing it and of course keep a positive attitude, the reason your sick is that you can’t ‘mind zap’ it away. Typical blame the victim mentality.

  46. Sandi

    What we don’t need is a new ‘organization’, what we need is a real organization – any takers?

  47. yankee transplant

    goddammit, Twisty, I’m sorry. I wish I could make it better. As many people have said, your chemo brain is much sharper than most peoples’ “healthy” ones. I bow to you.
    Sending you better-feeling thoughts.

  48. Joanna

    Say it out loud. We need to hear it.
    I have not had cancer, but I may some day (and in fact with my mother’s family history, it is quite likely) and I know people who have or who will. And I want to know how to deal with it in a real way, not in a state of perky denial.
    Moira, me too.

  49. MedeaOnCrack

    Please don’t misunderstand me Jessant. I’m not blaming the scientific community because they haven’t found a cure yet. I’m blaming them because they aren’t looking for one. What they’re doing is pharmaceutical marketing. This isn’t science, it’s business.

  50. MedeaOnCrack

    Ooops it wasn’t Jessant made the comment I responded to. I can’t find it now. Sorry Jessant I completely agree with your comment.

  51. Calabama

    Nothing the patriarchy likes better than a grateful, suffering woman who keeps her mouth shut. So keep yelling as loud as you want, Twisty — we hear you. And are the better for it.

    Rotten as you feel, you give us so much. I wish we could reciprocate somehow and make it better for you, damnit.

    SSRIs? Martinis? Etc.? Hope you can ease the pain by any means necessary. And though they may induce more pain than they salve, I’ve got some juicy pre-Codes I could send you if you’re so inclined.

    Sorry you feel so fucked. But glad you’re still with us. And thanks.

  52. MedeaOnCrack

    okey dokey for anyone (like me) who didn’t know what pre-Codes are, here it is. I’ve have two:

    http://www.greencine(dot)com/central/node/362/print

  53. ginmar

    C’mon, Twisty, say it loud; Cancer sucks and you blame the patriarchy, dammit. It’s bullshit that they don’t want you to blame about the bullshit. Fuck ‘em sideways.

  54. Catherine Martell

    Twisty, you’re incredible. Cancer or no cancer, you’re hands-down my favourite writer on the internet, or pretty much anywhere at the moment. I hope these comments have proved that not only would most blamers gladly touch your post with a ten-foot pole (fnar), but that they are – I am – profoundly grateful for your clarity, honesty, and dazzling insightfulness.

    I wish stuff like you’ve said above was said a lot more. I am probably teaching multiple grandmothers to suck eggs here, but John Diamond’s books on his cancer and being deeply pissed off with the “noble sufferer” mentality knocked me for six when I read them a few years ago. Many of the things Twisty and others say here recall his feelings. The BBC website has a poorly-written precis, though – in an appalling misjudgement that Diamond himself would have scorned – they have felt the need to end it on an upbeat note. http://news.bbc.co.uk/1/hi/uk/1198541.stm

    MzNicky: were I ever to have a cross-stitched kitchen plaque, it would say “Drink many margaritas. This too shall pass.”

  55. Dr. Helmet Breath

    “…the macabre lump of feminine acquiescence on her chest.”

    Holy shit, I love that. What cancer has wrought upon your mind and body notwithstanding, you practically SWEAT pure brilliance. Thank you for so colorfully and consistently sharing the inner workings of your brain with us. Thank you for not Oprahfying cancer (or anything for that matter), and honestly sharing all of the gruesome, unglamorous, and uncomfortably shitty details that come with a life-threatening illness and, more often than not, life itself.

  56. edith

    Buzzing off all my hair, intentionally, was one of the best things I’ve ever done. I haven’t taken a shower in four days because I DON’T NEED TO. I also have been wearing dirty clothing for a week. Sure, maybe it’s because I’m depressed and I haven’t done much of ANYTHING in lately besides go on the internet and sleep, but god damn if it isn’t great that without a mass of hair to deal with, no one even knows anything about my personal habits, so I can go to the pharmacy and pick up my medication without getting the Afeared Eye that you get when everyone is trying to determine whether your homeless or just crazy or both.

    No shame in having a rotten day/week/year. When anyone asks me how I am, I just say, “Listen, you don’t really want to know.” Most of them don’t. But then I have a lot of the same feminine issues, in that I listen to everyone else’s problems but don’t tell them my own. I’m very good at listening and giving advice, but I only tell strangers on the internet just how poorly I’ve been doing. It’s a problem.

  57. edith

    Oh, well. I’m in moderation. I support you, Twisty, and you can always tell us how craptastic you’re doing because god knows it makes me feel better to at least hear someone else complain without couching it in “grateful” speech.

  58. ew_nc

    My whole-hearted empathy goes to you, Twisty. Although I don’t have cancer, I have what may be termed “cancer of the psyche”. And, having tried almost all the drugs on the market, I’m now blamed for being “treatment resistant”. Then, just to top it all off, I let them zap my noggin with electricity. My brain will never be the same. And hearing platitudes about how “you’re lucky to be (insert your personal luckiness here)” only serves to infuriate and invalidate a person. Why are we so afraid to let people feel like shit?

  59. ew_nc

    Oh, and for far more sensible advice on relief of the symptoms of menopause, visit Susun Weed’s website on the Wise Woman’s Way.
    http://www.susunweed.com/

  60. Ron Sullivan

    Jokerine sez:
    Currently it isn’t even clear why and how cancer forms, what the crucial steps are to stop it from forming. This of course makes it unbelievably difficult to find a cure.

    Now and then over the course of my life, I’ve found it necessary to console myself by reminding myself that though lots of people are doing the best they — we! — can with what we have, we live in the Dark Ages.

    Sometimes that does sound optimistic though.

  61. EN

    Thank you, Twisty. I’m in a high-risk group for breast cancer, and it scares the daylights out of me. Mostly, I find it frightening because I don’t know what to expect. There’s all this crap about personal growth, and finding oneself, and being a proud survivor, and I just can’t buy it.
    What you describe is a whole lot worse than the standard sparkly happy line, but it’s comforting, too, because it’s honest. It’s much easier for me to face something when I know what to expect, even if it sounds awful.

  62. pocketina

    As much as I am befuddled by the desire of many to have lumps sewn onto their chests, I am even more befuddled by the stock idea that people must meekly uphold societal norms while desperately sick. Part of the reason that I refuse to have reconstruction hinges on the hope that people might learn that living beyond cancer doesn’t mean one has to shield the public’s gaze from its evidence. I had it. Deal with it. Stare at my sunken chest.

    The demand on cancer patients to always look good reminds me of the various cults of the Victorian era: the Stigmatic Nun, the Tubercular Invalid, the ever-pale, ever-lovely, fading flowers of femininity.
    I must admit that in my least charitable moments, not only does the breast cancer cause-marketing-machine’s army of runners & walkers sadden me, it reminds me of the fabled Children’s Crusade…ineffectual, doomed, and prone to successive waves of exploitation.
    Why is it so hard to get people to support nothing but research, free screenings, and simple hardship funds for people who need them? No pink t-shirts, not an inch of ribbon, no rewards. Giving is not a commodity exchange. Just fork over some cash to groups that use it responsibly. I mean, how many treatment cycles could Komen’s advertising budget pay for?

    Twisty, you made a huge difference in the fight I put into going through my bilateral, and how I help others deal with their own struggles. You have the most positive, creative anger I’ve encountered anywhere. Thanks.

  63. Flash

    We’ll politely say we’re fine, when we’re not, because we know that most of the people who ask are scared stiff of cancer, and would rather not know how shitty it is.

  64. Dawn Coyote

    Philanthropy is always selfish, isn’t it?

    Like, if I were to initiate “Twisty’s Caribbean Vacation Fund”, it would be mostly out of a selfish desire to keep the words coming well past the five-year survival mark, or to take comfort in the knowledge that even if you were not blogging, you were out there somewhere, heaping Blame upon those who most deserve it.

  65. LMYC

    ObDisclaimer: I don’t have breast cancer (at least AFAIK) and if I had to make a first-person, I stongly suspect that I’d rather die than undergo yet one more surgery for cosmetic reasons.

    However — while I can seriously question the motives of getting “reconstruction” done, can we at least acknowledge that these are body parts that are, ideally, present and that some women might not like to have something absent that has been there for a very long time? People don’t just have prosthetic limbs because of balance and utility, or else people wouldn’t use limbs with plastic silicone sheathes on them to look at least a bit like the skin on a normal human hand.

    I can see how the “problem” with breasts is that you are patriarchally expected to have them and flaunt them — but not too much or else you’re a slut, Just enoguh to be a good perky girl who appears to be able to turn men on without actually trying to do so. I know tits complicate things.

    But shit howdy people, give women who opt for that a bit more slack. This is a fucking amputation we’re talking about here. If I had cancer in my retina (and people do), I might opt for a glass eye, too. Sometimes people get reconstruction (or prosthetics or glass eyes) not because they can’t handle the antipatriarchal status of being the Thumb In The Eye Of The Man, but because when you’re missing parts, being the thumb in the eye of the man is a full-time fucking job, and that’s a hell of a job to carry off.

    Basically, Twisty as a role model can speak to this in the first person, but if you are unwilling to walk around topless with two mastectomy scars to let everyone around you, even total strangers, know that you almsot fucking died and might still do so from an horrific disease, then STFU. I’m serious. Being Cancer Chick 24/7 to everyone who can see you is not a job that everyone wants to volunteer for, and sometimes not everyone has the Cool Feminist Chops to do it. Get the hell off a woman’s fucking back for making the not-sufficiently-antipatriarchal-for-you choice or getting a reconstruction or wearing a prosthetic breast. Goddamn it, even when our fucking knockers aren’t there, everyone owns a piece of them.

    Christ. Again, I can see the political point of what’s being said, and again — Twisty has every fucking right to talk. She’s been there. Other women who have been there can talk about their experience. But Jesus. We’re talking about women who have been to the brink of death and still are sitting there. Cut them some fucking slack, would you?

  66. CuriouserAndCuriouser

    Sorry, sorry, sorry you have to deal with all this, Twisty! I think it’s great that you come out and say exactly what you’re feeling, I hope you have a safe place where you can scream and yell it out if you need to (at least that’s what helps me when things get bad). But I realize that might not work for you, maybe writing is your best way.

    Yes, bottling it up to keep everybody else happy totally sucks. We should never do it, and thank you for setting the example of busting loose.

    Please don’t ever hold back anything you need to say, it’s your blog and you should say whatever you want. And as so many here have said, you turn even the most mundane events into works of art with your words. Thank you for your inspiration, even, and especially! when you’re not feeling very inspired, or are feeling downright awful.

  67. MzNicky

    “[A]s a woman who has intentionally shaved her head, I know the reactions you’re talking about.”

    Bird, dear: No. No, you don’t. Twisty is talking about losing one’s hair to chemo. Big difference in involuntarily losing the entirety of one’s bodily hair, including that on one’s head, due to cancer treatment, as opposed to purposely doing it as a punk statement, or whatever. BIG fucking difference.

    Sylvanite: My position is that cancer is not so much one’s body turning on one’s self as it is something OUT THERE that’s causing one’s body to fuck up. It’s not the human condition per se so much as it is the shit we’ve done to the atmosphere, the environment, etc., acting on the body, that is fucking us up, cancer-wise. Again, BIG fucking difference. This is just another way of blaming the victim.

    Jokerine: In my BrCa research I turned up the curiously unpublicized finding that a rather sizeable percentage (I forget the specific number) of breast cancer tumors will do nothing, nada, in terms of growth, if left undetected and hence untreated. So don’t get all in our faces about the fabulousness of scientific progress. Yeah yeah, mammograms, advances in adjuvant meds, yadda yadda. I understand there’s now a vaccine for prostate cancer, which, isn’t that special, and would they had had it when my dad was first diagnosed, but still: As Twisty points out, with all the pink-beribboned races and sales of detergent and other capitalistic manipulations and exploitations of this female cancer epidemic, wouldn’t one think that the millions, if not billions, that have putatively been raised thus far in the name of breast cancer would have by now come up with something more than “get a mammogram” (assuming you can afford it), feel yourself up constantly (and thus, if you miss the lump, it’s your fault), and, if/when you’re unfortunate enough to be one of the, what is it now, 1 in 8?, who get it anyway, well, Big Daddy Medicine’s got the shit, as outlined by Twisty, to turn your life into a fucking living hell, in spite of which you’re expected to wear a pink-rhinestone-encrusted ribon pin and be all jolly and cheery about it anyway, lest you bring down others?

    HP: “twice I was so depressed I scheduled and paid for plastic surgery. Once with a credit card. Can I BTP?”

    You betcha. (And “Hamster Wheel of Grief” is a great way to describe this phase that Twisty’s going through, I think.) I’ve been to two breast surgeons to consider reconstruction my own self, which experiences reiterated to me how the patriarchy mightily waggles its wrinkly schlong when a newly de-boobed female contemplates her de-sexbotted future. I ended up wanting to tell each of them to eat me. I fucking don’t think so.

    Sandi: “What we don’t need is a new ‘organization’, what we need is a real organization – any takers?”

    I’m in. Precious little real grassroots activism over this has occurred, as far as I know, since Susan Love rallied women to storm the federal government with hundreds of thousands of letters in the early ’90s to finally get some BrCa research $$ going, which actually happened, and I for one have been a beneficiary of that subsequent work. That’s when Clinton was in the White House. Perhaps once we’re finally rid of the Chimp in Chief and his fellow thugs, a resurgence would be worthwhile.

    MedeaonCrack: ” I’m not blaming the scientific community because they haven’t found a cure yet. I’m blaming them because they aren’t looking for one. What they’re doing is pharmaceutical marketing. This isn’t science, it’s business.”

    Yes it is, yes it is, as well as finding ways to blame the victim. I did research on this for my master’s thesis in 2003, and the percentage of BrCa studies devoted to “cause” (i.e., blaming the cancer victim for not exercising enough, not eating enough vegetables, drinking, smoking, taking birth-control pills, having abortions, etc., etc. — none of which, by the way, showed any definitive link to breast cancer) that focused on “environmental conditions” was very negligible. Oh Duh. Whom shall we blame?

  68. LMYC

    Again, I’m not talking about not wearing lipstick or not having the perfect hairdo while you’re undergoing radiation treatment. I’m talking about attempting to rebuild at least facsimile of something that was fucking amputated. Every woman can make that choice for themselves, and of course choices are open to scrutiny — and I can certainyl see scrutinizing a choice that consists of a woman who has possibly ten surgeries under her belt opting for another one for elective reasons, when the reasons can be questioned.

    But do you all — excluding the women who’ve been there — even understand how draining it can be to a woman who has already been through fucking hell and back to effectively announce to the word I HAVE A DEADLY DISEASE AND AM MISSING PARTS THAT I WOULD REALLY RATHER HAVE BACK? Some of us recover through being the thumb in the eye, some of us find other ways of being the thumb in the eye.

    It just seems like a shitload of 24/7 to ask of a woman who’s been nearly fucking DEAD to overturn the entirety of societal expectations regards her breasts — which ain’t even there anymore.

    It’s worthwhile to question a woman’s choice to undergo that surgery, but just as in the case of oh ABORTION, I strongly doubt that any woman is going to undergo that without a buttload of questioning in her own head. Why do I want to go through with this? I’ve been through ten surgeries already — why the hell am I going through another one? Is this to please my husband? Is this for me or for other people? Christ, I’m sick of being cut open, what the hell is the point of this? How fucing arrogant of all of us to assume that a woman who is missing body parts from cancer isn’t going to run through this in her head in a million ways and in a depth that we can’t even imagine.

    The literature — oh, I’ll go after that. The way it’s marketed, sure. But if ANY woman can see through that garbage and really ask herself about it, I’ll wager it’s a woman whose scalp feels like it’s got pins stuck in it and who can’t fucking wait for the REST of her hair to fall out so she can stop seeing it on the pillow every time she wakes up.

    I don’t know. Like I said, I haven’t been through all that, so I can hardly talk. But goddamn it, as much as I imagine I’d never get reconstruction done because I couldn’t imagine going through one more surgery for no reason, I simply cannot be so snide about women who have. If we’re going to say that no one thinks about abortion in such depth as a woman who’s about to have one, then we can say the same about this. I’ll question her, sure — I may reach my own conclusions about why she chose what she chose, but I’ll be damend to hell if I’ll call a woman who nearly died a thousand shitty deaths frmo a fucking shitty disease a patriarchal sellout because she’s offered the option to rebuild a facsimile of a body part that got SURGICALLY CHOPPED OFF and that she might actually miss.

    Argh. Shutting up now.

  69. bitchphd

    I think by “repulsive” you meant “refreshingly honest.” Probably it’s the chemo brain that fed you the wrong word.

  70. Mar Iguana

    You’ve helped save what shreds of sanity I still have left. So, sure doesn’t bother me to hear how you’re honestly feeling. Damn, I wish I could make it go away though.

  71. Anastasia B.

    I will unabashedly proclaim that sometimes you make me howl with laughter and wince with pain. Thank you Twisty. For the real, the raw, and the courage to tell it. I cannot go a day without you, and we are all the better for it. Well, that and the meds.

  72. Miranda

    My mom is going through her third bout of ovarian cancer and has just been put on tamoxifen because the cytotoxins are screwing so badly with the rest of her body. I try to encourage her to say what she feels but let her set the tone. I encourage you as well.

  73. lawbitch

    There’s a blood test for prostate cancer, and the docs don’t cut off the menz dicks when they get it. Just sayin.

  74. MedeaOnCrack

    You’ve hit it lawbitch. The focus should be on why after 50 years the solution is the same for women today as it was for our grandmothers, not on how we can get more baseball like knobs accepted as desirable and necessary ‘prosthetics’.

  75. Sunday School Dropout

    Twisty, someday soon I am going to take my road trip across this country, and when I stop in Texas, I am taking you for tacos. My treat.

  76. badkitty

    LMYC -
    Thank you! Thank you for speaking up for those of us who struggled so hard with the decision over whether or not to do reconstruction. You get it. I did not want to be Cancer Woman 24/7. It was a terribly hard issue for me to face and I still struggle with feeling “not feminist enough” because I decided to have reconstruction. I was so sad to realize how deeply the patriarchy BS had soaked into me. Thanks for not shaming me or any other woman who struggles with that decision. Cancer sucked enough. I don’t shit from other woman making me feel like I sold out.

  77. MedeaOnCrack

    MzNicky it was about a year ago, here, that you damn near slaughtered me for saying what you’re saying today.

  78. MedeaOnCrack

    Badkitty it’s not women who sold out but the medical profession that did, by not finding better ways to treat breast cancer. It is just because our breasts are so important to us that new techniques for smaller scars isn’t quite good enough after 50 years of women fundraising.

  79. MzNicky

    MedeaOnCrack: Say what? I don’t remember that. Please refresh my memory.

  80. LMYC

    It is just because our breasts are so important to us …

    The thing is, I can see why this is the case without having to say that it’s patriarchy. It’s another case of carbon load; in the world at large, even HAVING breasts is a patriarchal carbon load, but goddamn it, they are still our fucking body parts and ANYONE will resent having them lopped off.

  81. MedeaOnCrack

    I’m Pony.

  82. MzNicky

    lawbitch: “There’s a blood test for prostate cancer, and the docs don’t cut off the menz dicks when they get it. Just sayin.”

    No, they don’t, because prostate cancer doesn’t involve the penis. But my brother-in-law had a radical prostate-ectomy (or whatever it’s called) when he was diagnosed with aggressive prostate cancer at age 59 a year and a half ago. It was horrible, and he wears diapers now and takes hormone therapy that’s stripping him of testosterone, just as women with reproductive cancers often get stripped of their estrogen. Cancer is an equal-opportunity plague, and it’s all hideous.

  83. LMYC

    And anyhow, if the patriarchal value and carbon load of breasts outweighs their simple value as a normal body part to any woman here, then I will personally send flowers to your hospital room when you decide to get your own perfectly healthy breasts removed in a feminist statement against the patriarchy valuation of said breasts.

  84. MedeaOnCrack

    Well damn absolutely resent it. And demand some answers from a medical profession that has done diddley squat on this for a generation.

  85. pheeno

    Fuck it. The next time you get asked, answer honestly. They may think you’re ungrateful (idiots) but at least they might STFU and stop asking stupid questions.

  86. Spit The Dummy

    LMYC said: But shit howdy people, give women who opt for that a bit more slack. This is a fucking amputation we’re talking about here. If I had cancer in my retina (and people do), I might opt for a glass eye, too. Sometimes people get reconstruction (or prosthetics or glass eyes) not because they can’t handle the antipatriarchal status of being the Thumb In The Eye Of The Man, but because when you’re missing parts, being the thumb in the eye of the man is a full-time fucking job, and that’s a hell of a job to carry off.

    Haven’t been there with the breasts, or even eyes but been there with eye-lids. Had my left lower eye-lid removed completely due to cancer and I caved and had plastic surgery to rebuild it. I didn’t even think twice about it, and only partly because you need a lid or you’ll end up damaging the eye itself. LMYC is right, the scars from the surgery (which I must admit are quite minimal, he was a decent surgeon) are enough to carry around, a hole in my face is something I didn’t want to have to show the world every day. Especially after going through all the other surgeries (4 all up) – I was depressed enough after weeks of walking around being stared at with a bandaged eye and tripping over everything in sight!

  87. pandapan

    LMYC: “And anyhow, if the patriarchal value and carbon load of breasts outweighs their simple value as a normal body part to any woman here, then I will personally send flowers to your hospital room when you decide to get your own perfectly healthy breasts removed in a feminist statement against the patriarchy valuation of said breasts.

    I’d do it right now if I had the money. I would be so much happier with an androgynous body. Binding gets a bit sweaty in the summer, after all. Not being allowed to go topless won’t be an issue though; I’ve got the Irish Curse. You won’t catch me outside in the daylight not fully covered anyway.

    P.S. I like daisies best.

  88. KMTberry

    Currently it isn’t even clear why and how cancer forms, what the crucial steps are to stop it from forming. This of course makes it unbelievably difficult to find a cure.

    It is just ONE thing, but they are PRETTY FUCKING SURE that Pesticides, and the by-products of making PLASTIC, very definitely CAUSE CANCER, and they are too fucking GREEDY to STOP USING THEM/not just dump them into the water etc.

    Pesticides: PARTICULARLY breast cancer. Hey, I found THAT out reading THIS BLOG!

  89. Twisty

    Well, thanks for turning this into a referendum on boob reconstruction. That was totally my point!

  90. roamaround

    Catherine Martell said everything I wanted to say, including quoting MzNicky: “Drink many margaritas. This too shall pass.” If anybody decides to cross stitch, I want that kitchen plaque!

    If it helps to know how much you are appreciated, Twisty, I add my vote though the evidence is already overwhelming. You are part of a phenomenon the likes of which the world has never seen. I’m serious here. How many real-time worldwide radical feminist conversations about, well lots of things, but say Firestone, have ever taken place on this planet?

    How much of a difference will it all make? That remains to be seen since we may all go down in some kind of blaze or whimper before any of us reaches our natural end. It does make a difference to lots of us, though, here and now. Thanks for wading through the fog in your head to find brilliance to share.

    I really wish you weren’t hurting. Damn it.

  91. MzNicky

    Medea/Pony: I can’t imagine I “damn near slaughtered” you a year ago for saying what I’ve posted here. I do recall your positing something to the effect that you consider cancer treatments futile, with which I disagree. Beyond that, I don’t know what you’re referencing.

  92. Twisty

    Speaking of MzNicky, I would like to point out that she singlehandedly saved me, at one pretty low point during chemo last year, from eating a revolver, when she sent me an email that said “It will end.” It may sound trifling to you, but when you’re puffed up like a sausage from steroids, lying in a Barcalounger of Doom on the business end of a toxic infusion, bald, with bleeding sores on your tongue, and throwing up into a bedpan, that’s a mighty excellent thing to hear.

  93. Frumious B

    but they are PRETTY FUCKING SURE that Pesticides, and the by-products of making PLASTIC, very definitely CAUSE CANCER

    No, they aren’t sure.

    Hey, I found THAT out reading THIS BLOG!

    I submit that medical journals are a better source of information on cancer research than blogs, no matter how well written.

  94. Alex

    Conservatives think fear of cervical cancer will prevent girls from committing the ultimate sin of having premarital sex: http://www.newscientist.com/article.ns?id=dn11842&feedId=online-news_rss20
    Fucking assholes. I was enraged when I read it. How could anyone with any sense of morality fight against a vaccine that essentially PREVENTS a form of cancer?

  95. MzNicky

    Twisty: You want I should cross-stitch you a kitchen plaque that says “Drink many margaritas. This too shall pass”? I’d walk barefoot across broken glass for you, so I s’pose I could learn needlework. Just say the word.

  96. Pinko Punko

    I could launch into an entire spiel about how much your words and thoughts mean to me even though it is just this electronic connection, but I don’t want to prove one of your darker theses that many of our motivations stem from selfish or self-centered behavior. I will just say thank you for your smack in the face honesty. I mean that as much as I can mean anything.

  97. Kelly

    Funny how hearing about others’ experiences gives me new perspective on mine. My eyes were cut out to treat bilateral retinoblastoma when I was 9 months old. RB is a cancer with exceptionally high incidence of secondary cancers in middle age (some studies say as high as 50%), so my parents essentially assumed and constantly reminded me (gee, thanks) that it would be back. One can only live with that kind of hovering cloud of doom for so long, especially as a child, so at some point I just stopped being afraid of it. Not because of any innate courage or any of that kind of bullshit, simply because I didn’t feel like thinking about it anymore. Right now, after reading your posts here, I’m feeling incredibly fortunate to have been forced to accept an imminent death at a time when I could not remember a time before.

    I remember how, as a little girl, I could feel my mother shrink in embarrassment when I would tell some little old lady that I was about to die with this great big smile on my face, just to fuck with her head (I regret that my charmingly idiotic prosthetic eyes weren’t able to capture the facial expressions I received in response). Because everybody assumed that I was a goner and because being a poor pathetic blind chick there was NO WAY I’D EVER AMOUNT TO ANYTHING, nobody ever expected jack shit out of me…which then and now both pisses me off and entertains me, sometimes simultaneously.

    Right now I’m also feeling pretty pleased that nobody knows what the hell RB is or I’d have to listen to bullshit self-gratifiers talking about it and their holy awareness of it every waking minute. Though at least I’m spared having to see the various visual bombardments…the idea that blindness is the worst thing that can befall a person is total bullshit, take it from me.

    32 and not dead yet, but I’m sure the damned clock is still ticking. In the last four years I’ve lost my father, my sister, and my husband to nasty ass cancer, my brother and mother to other horrid diseases, and my close friend to her fucking ex’s desire to crush her throat and bash her skull in. There’s no good way to die. Good death is so Hollywood.

    And LMYC, amen about the hair. Mine hangs to my ass and would take over the universe but for the lack of opposable thumb. One of my favorite pastimes has always been to braid it wet and smack people with it (drew blood once, I’m told).

  98. Brianne

    When I was reading this to my husband he latched onto the idea of the wretchedness of being told it’s an opportunity for growth, saying:
    “It’s like saying that your house has been destroyed by a tornado, it’s your opportunity to own a mansion.”
    Why more people don’t call it for the bullshit the “growth opportunity” is I will never know.

  99. Gertrude Strine

    “Currently it isn’t even clear why and how cancer forms, what the crucial steps are to stop it from forming. This of course makes it unbelievably difficult to find a cure.”

    Oh I think there’s a really good idea of what causes these cancers of rapidly replacing and cycling tissues.
    A really good idea.
    There’s just the other day a compendium published of 200 or so of the chemical culprits – many of which the little ladies are in contact with so as to maintain their identification as the woman class.
    http://www.latimes.com/news/science/la-na-cancer14may14,0,3950809,print.story?coll=la-home-center
    And I don’t mean only cosmetics and household chemicals.
    I note, for those following the politics of the cancer industry, that the study got 5 million from the Komen Foundation.

    But there’s no will to urgently examine that end of the supply stream for the modern medical engine – because it’s not a source of income in the first place and in the second more important place, controlling the ubiquity of the culprits in the woman’s environment would reduce the income of the patriarchal corporation gods.

    That most recent report and the responses, sadly of medical establishment defenders in this thread too, remind you of the other spin-fest? Tobacco and its profiteers. How much easier to deflect blame from your own product when there are another 199 industries running the spin too?

    In a very real sense, women can be regarded as by-catch for the great trawler of this industrial/petroleum age. We remain unaffected by the sea of synthetic stuff long enough to produce and raise replacements, and then our agonised flapping around on the deck from the net that has caught a shipload of profit for oh, about 20 different medical and pharmaceutical interests is of course a real shame, but doesn’t affect the progress of the great profit trawling fleet. And with the pink washing, or before that the injunction on any woman from showing any pain, there are enough crippled survivors of onco machines that can continue to do the housework for many more years, even if it is a total battle every day for them. And as for we who have been so sinning as to refuse to reproduce? We deserve the pains of the damned anyway.

    “What we can do is change our (american) culture so people that hurt can say so. And if you feel underinformed, well I can try to find the answers you want, or another scientist. We are out there, we are people, talk to us! ”

    I blame the patriarchy every day in my sh*77y little corner of the medical machine. Don’t come and talk to me because all I’m allowed to reply is
    ~have a nice day, you don’t really matter in the grand scheme of things.

  100. Miranda

    You want I should cross-stitch you a kitchen plaque that says “Drink many margaritas. This too shall pass”?

    Subversive Cross Stitch has a great ‘Fuck Cancer’ graph.

  101. Carol

    Twisty, I hope that you start feeling something more like your old self soon. I have been grappling with Lyme disease which causes brain fog similar to what you describe. I think of all the symptoms, the brain fog is the worst. It’s as if your brain is a computer and someone erased an important part of the hard drive. As someone who has always prided herself on being a smart person, and who’s generally been viewed that way by others, it’s a real mindfuck to one day see that the world around you is treating you like a dipshit airhead. And even more of a mindfuck to realize they are right. I feel for you. If it helps, you on a bad day are more intelligent, trenchant and hilarious than 99.9 percent of the population on a good day.

    A friend of mine wrote up a list of the top 10 worst things people say to you when they find out you have cancer.

    http://the-ravelld-sleave.blogspot.com/2006/10/just-fine-thanks-how-are-you.html

  102. Hawise

    I cross-stitch and would be willing to stitch that plaque now that the new reading glasses are here. I made myself a pearly jacket with “This too shall pass” as the motto on the back. Thirty pounds and still adding buttons.

    My aunt’s wife is in an on-going battle with incurable bone cancer and I am so glad that they have each other. It is in these times that we really need people who can take us at our worst and let us be at our worst. Forgive us if we want you to stick it through, we like checking in everyday for your take on the wide, wide world.

  103. incognotter

    Twisty,

    My dog Patches sends you gentle kisses and a tail wag. He doesn’t want you to suffer heroically, or be reconstructed for his comfort. He just wants you to feel better.

    I want the same, but am prone to saying stupid things by not thinking first. I aspire to my dog’s tact and compassion.

    Back to lurking. (Elipses omitted for your peace of mind.)

  104. lawbitch

    Thanks for pointing out my mistake, MzNicky. So sorry to hear about your loved one. It sounds so dreadfully awful.

    My friend’s husband had prostate cancer, and the docs wouldn’t operate because he was too heavy. Die on the table or die my cancer? They made him do the killer radiation treatment instead. Sucks.

    *A reminder to all blamers: schedule check ups, paps, mamograms today*

  105. Sylvanite

    Well, envvironmental toxins do help cause some cancers, but unfortunately, MzNicky, a lot of cancers really are our bodies’ cellular reproduction systems going haywire for no good reason. It’s not blaming the victim any more than pointing out that environmental toxins don’t seem to cause multiple sclerosis is blaming the victim. Of course, it does seem that viruses are increasingly being implicated in cases of cancer and autoimmune disfunctions, but still. Sometimes bad shit just happens to people, even when they’ve done everything right, and it’s nobodies’ fault! That’s what really sucks about it.

  106. lawbitch

    “I submit that medical journals are a better source of information on cancer research than blogs, no matter how well written.”

    You mean those publications funded by the incestuous pharmaceutical industry?

    The chemical exposure situation does parallel the whole tobacco debacle. The problem is that industry can buy scientists, legistlators and law firms to protect themselves.

    Check out your environment:

    http://www.epa.gov/enviro/html/em/index.html

  107. stekatz

    Don’t know if you’re still reading comments on this, but yes, it’s amazing how the world moves on and expects you to move on too whether you’re well or not.

    I wish I had a magical taco for you, but I don’t. Barring that, continue to complain at will and none of your readers will expect you to put on a happy face.

  108. vera

    Twisty, if I could send you a dozen long-stemmed tacos, I would. I’m in total agreement with Catherine Martell–you are my favorite writer. So if chemo is messing with your brain, it sure as hell doesn’t show in your writing which is pure genius.

    You’ve given me a sense of what my mother must have gone through. She had a mastectomy and radiation when she was in her fifties. Ten years earlier, she had been gravely brain injured in a car accident, and because of that accident she was never able to express herself clearly.

    I remember my sitting in a little huddle in the hospital waiting room with my dad and sister, astonished that the assumption I’d carried around since I was eight years old–that nothing could possibly be worse than losing your mom to a brain injury–had just turned up false. The doctor entered, glanced at the three of us, and announced with a big smile, “We have so much to be thankful for!” Meaning, of course, that he was pretty sure the operation had been a success.

    And I have never had the nerve to write that, or tell anyone how I felt in that moment, until now. I’ve never even discussed it with my sister, and as I write this, I realize that I should.

    Twisty, thank you for being.

  109. josquin

    Twisty,
    Joining the throngs to say how sorry I am to hear about the wretched crud you’ve had to endure and continue to endure. Thank you for saying how it really is. Thank you for passing along MzNicky’s words from farther along the path.
    Wishing you respite when possible, and many small moments of grace.

    Do dogs help at all?

  110. Molly

    My grandmother died almost three years ago of ovarian cancer and although she suffered horribly, she played the role of noble victim as long as she was able. Near the end, with the chemo and the steroids playing havoc with her emotions and personality to the point that she was swearing and threatening to kill her grown son, she finally broke down and told my mother (her daughter-in-law), with whom she’d been at odds for all of the 20 years my parents were married, that my mother had gotten it right in being so independent (what my grandmother in earlier years had uncharitably characterized as “selfish” and “unchristian”) and that if she could go back in time, she would have devoted less of her time to others at the expense of her own happiness. She died an angry, bitter woman with many regrets who nonetheless felt compelled to pretend at serenity in the face of her own mortality. Witnessing my grandmother’s slow death, more than any other event in my life, convinced me of the idiocy of the whole “woman as martyr” paradigm, and I vowed that if I ever contracted such an illness, I would shout from the rooftops about its suckitude; fuck anyone who can’t handle the reality of the pain. Why do we expect such stoicism from people who are already enduring the unimaginable?

    Thank you, Twisty, for your honesty and willingness to share the gritty reality of the ugly situation behind the pink ribbons and smiley faces they keep trying to paste on cancer. Most “survivor” stories are sorely lacking that honesty.

    You are the light at the end of my tunnel on the days when I feel like I’m being smothered by patriarchy and I’m the only one who sees it.

  111. Bird

    “[A]s a woman who has intentionally shaved her head, I know the reactions you’re talking about.”

    Bird, dear: No. No, you don’t. Twisty is talking about losing one’s hair to chemo. Big difference in involuntarily losing the entirety of one’s bodily hair, including that on one’s head, due to cancer treatment, as opposed to purposely doing it as a punk statement, or whatever. BIG fucking difference.

    Shit, I should have been more clear. I was replying to HPS’s experience of having people think you have cancer or the like when you don’t (her because she has a condition that has made her lose her hair, me because I buzzed mine off).

    My mom is in a hospice dying of brain cancer. She lost her hair because her head was radiated. I’d never equate my experience to hers or Twisty’s. Cancer is shitty hell (and I may be facing it soon too, depending on my test results).

    Sorry to anyone who might have been hurt by my lack of clarity. I didn’t intend to trivialize anyone’s experience.

  112. Feminist Avatar

    It seems to me that the expectation to put on a smile and to keep you feelings to yourself is a true patriarchal construction. Women have always been expected to act stoically in the face of pain, whether it is inflicted by illness or an abusive husband. The patriarchy needs you to smile and suck it up because if you realise that you can complain, you might start complaining about all the injustices in your life. You might ask why you need to put up with a violent husband or catcalls on the street or wage discrimination.

    One of the big steps of the Women’s Movement has been to encourage women to speak out against injustice, against the pain that the patriarchy has caused them.

    Speaking out about your real feelings towards physical illness or pain is a feminist act, because it teaches us to challenge the need to be stoic in the face of adversity that should actually be challenged. Furthermore speaking honestly about your own body is a feminst act as it reclaims your body as your own, in a world where you body is a commodity.

    Keep on blaming Twisty, you’re doing a fantastic job.

  113. mAndrea

    I read this yesterday, and today I still don’t know what to say.

    Except possibly that you are an incredibly amazingly woman, and I admire you dearly.

  114. Theriomorph

    [offers cup of tea with milk and brown sugar, side of Pepperidge Farm Bordeaux cookies, no instructions whatsoever on what you should be doing and thanks for what you are doing]

  115. mg_65

    Dog have mercy, Twisty, I love you so much.

    I sent this post to my best friend who has just lived through Leukemia. About eleven months of chemo hell.

    Thank you for being so consistently awesome.

  116. Theriomorph

    [or if that sounds gross or digestively disastrous, this.]

  117. mg_65

    Ha, Tmorph, fancy meetin you here.

  118. lightly

    Well, I’m too far away to rub your feet, but if there is ever anything I can do to repay even a fraction of the laugh-out-loud moments you have given me, just say the word.

    Unfortunately, offering writing on anything close to a par with yours is not an option here.

    Perhaps an attractive photo of my cats in their Halloween capes and bow ties?

  119. Jodie

    If you find yourself in Oklahoma, I give really good footrubs; I’ve been giving them for 40 some odd years, starting with my mom, who used to be a nurse. You rock, Twisty!

  120. PhoenixRising

    Oh, Twisty. This will pass. Two thoughts from my wife’s experiences over the past 13 years:

    1) There is no such thing as too much drinking, during this delicate period between having been treated and feeling all the way alive again. It turned out in my wife’s case that alcohol became a problem many years later, but it sure got her and us through the crisis of the first 5 years. Pour another magarita, and next time I’m in town I’ll buy you one.

    2) The mental fuzziness is real. It’s also (probably) reversible. My wife is not at any level the person she was before chemo–the hair came back a new texture, the weight is sticking still, the patience with idiots is long gone–but her sharpness returned sometime in the third year. She’s not the person she was and I’m damn glad. Most days so is she. But the first year, when she could read but not critique her own work product from the year before cancer–that stank.

    This will pass. Keep blaming, it sharpens the saw.

  121. lawbitch

    I hope that dogs help. Speaking of which, I hope that Zippy has fully recovered and that ya’ll are comforting each other.

    *hugs for Twisty and Zippy*

  122. magickitty

    Word up to Twisty. Keep on raging.

    Excuse me for being on topic after the fact, but I too hate the “how are you doing?” greeting, which is so empty and meaningless that I always automatically reply with an equally meaningless “Oh, good!” And I used to do the same to other people – it was more of a verbal tic than anything else.

    Being a depression sufferer, I was NEVER good. And frankly, I didn’t care how other people were, since I was always brooding with my own emotions. So I stopped asking. I didn’t think anyone had noticed, but the people who I valued and liked stopped using the phrase as well. Now, they (and I) only use it when they (and I) really want to know. When people, i.e. strangers or bare acquaintances do ask me, I just brush it off with a “fine, thanks!” and don’t ask them in return. They know it’s a brush off, and sometimes they’re surprised, but mostly they don’t notice, or choose not to notice. I’m hoping that they realise how inane the question is, and stop asking it automatically.

  123. lawbitch

    I prefer, “Hi. It’s good to see you.” It’s a great way to open the conversation.

  124. Yeny

    Twisty – Tell it as it is, you should never have to hide how you truly feel. As to your writing, you’ve got some mad skillz with words, girl.

    I’m rubbish when it comes to talking about personal crap, but I really wanted to let you know that you’ve changed the way I feel about myself and about life. I used to hate being a woman, I hated it every single day for the way it meant I was treated and how it made me feel about myself. As a result, I’ve suffered with severe depression for most of my life, of course, I didn’t realise how much it had to do with the fact that I despised being female in a patriarchy. That is, until I stumbled onto IBTP

    You and all of the blamers here have made me proud to be a woman. Thank you Twisty and all the amazing women that comment here, you’re all fucking awesome.

  125. Twisty

    On behalf of the amazing women who comment here, Yeny, thank you.

  126. Yeny

    Oh god no, don’t thank me. You guys are the ones that come out with incredible comments that leave my hand raw from slapping my thigh in merriment.

  127. S-kat

    What to say?

    That must really, really suck.

  128. kiki

    When my mother was battling lung cancer that had metastasized in her brain she became confused and very quiet. One day, we were sitting together and she was gazing out the window at her favorite tree and seemed very far away. I asked her what she was thinking. She turned to speak and I leaned in (as her voice had gotten weak)and she said, loudly, and clear as a bell, “sometimes you need to grab life by the short hairs and yell, “FUCK YOU”. Not bad advice.

  129. edeaOnCrack

    The latest safe products list from the Environmental Working Group. Don’t wash your hair with carcinogenic shampoo:

    http://www.cosmeticdatabase(dot)com/index.php?nothanks=1

  130. Twisty

    “She turned to speak and I leaned in (as her voice had gotten weak)and she said, loudly, and clear as a bell, “sometimes you need to grab life by the short hairs and yell, “FUCK YOU”.”

    Well, this caused me to emit a guffaw.

  131. Tigs

    I know what it is to be sad.

    My first comment got ate. Much love and admiration.

  132. kate

    I saw this post yesterday and didn’t comment, I didn’t know what to say. Yeny and so many others, including myself have said many times how important blog is.

    I don’t or never knew anyone with cancer, my mother had it, but I as thousands of miles away and my consolation wasn’t requested, I was informed after the ‘cure’.

    Twisty, you have reached out to me, I wish I could offer equal or better yet, more, but I find myself falling short. All I have is my pathetic attempt to empathize. I wish I could rip out a piece of my heart and throw it to you and all you’d have to do was hold its warm throbbing mass and some magic power would make you feel better and all would be well. But this type and my limpid effort at expression of how I feel will have to do.

  133. therealUK

    Being so ill is horrible, and then the expectation to be “positive” and “brave” ? Yeah, sod that.

  134. kiki

    Well, this caused me to emit a guffaw.

    Me too. I didn’t know what to say when the hospice nurse asked me what she had said. My mother appeared remarkably calm and so no one truly understood that she was in the throes of Weltschmerz. Behind her drug-induced placid visage, a terrible storm was raging. She hated and feared doctors but worried if she (or I being her loudmouth daughter) “misbehaved” they would not help her to survive or that they would leave her with unmanaged pain. She was a self proclaimed, “plain talkin, tough old broad” who in this time of vulnerability and suffering felt forced to pretend otherwise. I know she died a little death every time her oncologist patronizingly called her, “dear”. You could see the anger in her eyes. When I read your post I could only think that she could have written it if she had the opportunity, courage and clarity that you possess. You need to write it because women like her cannot. IB(the fucking)P

  135. Antoinette Niebieszczanski

    You make me feel small for ranting about inconsequential things. It’s stupid self-indulgence and I need to just STFU already.

  136. That Girl

    Just wait. A few years from now Oprah will have on her show a breast cancer survivor who has “discovered” all the things you said in this post and is “brave” enough to share it.
    Even more nauseating, each of the women interviewed will be compelled to add how “lucky” she is to have survived before she can tell you how bad it sucks.

  137. amanda

    I love you.

    No really.

    My husband died at age 24 after having leukemia for a long time. He passed away last year.

    Throughout the treatment and after his death, people told me so much bullshit that I felt that I was drowning in a sea of saccharin.

    How about being fucking REAL for a change?

    I wrote a lot about the dumb shit people said at my old blog. I’m managed to keep a tighter cap on my opinions recently through heavy usage of meds, drugs, and having a mild mental health issue.

    Keep on preaching the word so that people get used to the TRUTH.

    love,
    amanda

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