Cancer Happens

Tempting the Fates?

I might tick off a few people with this post, but so be it. I cannot control what or how anyone else thinks. Indeed, I can’t even control my own destiny. I might be able to exert an effect on it now and then, and I certainly don’t lay around passively awaiting its designs. But control it? I think not. I’m not that powerful, and neither is anyone else.

The ladies in this tapestry are the Fates, three sisters who, the ancient Greeks believed, control our human destinies. Clotho, the spinner, holds the spindle from which she draws the thread of life. Lachesis holds the rod that measures the length of a life. And Atropos holds the shears with which she snips the thread, thereby ending a life. I don’t know the identity of the woman laying at the feet of the sisters. In fact, I can’t quite tell whether the Fates are stepping over her or upon her. But in any case, I Photoshopped my face on her, because it has certainly felt during much of the last year or two that I was at the mercy of something or someone that was kicking me around.

I have been pondering the philosophical and etymological nature of this post for weeks now, maybe even months, so let me just say something right up front. I did not ’cause’ myself to have breast cancer. The best scientific and medical minds of this century don’t know what causes it. I was one of those people who should conceivably never have had breast cancer. I was healthy, slender, fit, and had no family history of breast cancer and no genetic markers for anything. So I think I have every right to say that I had nothing whatsoever to do with my developing breast cancer. It was a bolt out of the blue, or a decision by the triad above if you like, but it sure wasn’t my fault. And if I hadn’t made my peace long ago with the notion that we are mere specks in the universe, and that, despite our best efforts, we can’t really control a lot of the stuff that happens in our lives, I would have gone completely around the bend when I was diagnosed. But I did not. That’s where my profession as a health care clinician helped me a lot, because I’ve seen every kind of rotten luck befall all kinds of people. And trust me, most of the time it wasn’t their fault either. Illness happens.

But, oh, we humans don’t like to admit how powerless we really are. And don’t get me wrong: I’m no fatalist. No matter how huge the cosmos is, and how teensy we are in comparison, I still think we have a moral and spiritual responsibility to be good to others and ourselves, and to try to leave our little corner of the place a little better than when we arrived. But when you are diagnosed with cancer, all manner of human hubris, superstition, advice, fear and plain ol’ errant nonsense comes your way, along with the things that actually help, like validation, compassion, factual information and support. Just now, as I made myself a snack before sitting down to write this, I peeled the lid back on a tub of yogurt and found an offer for a free copy of a book that describes how we can prevent cancer by eating organic foods. Lordy. Sometimes you just wish everybody would leave you the hell alone.

People Are Not Batteries

One of the most prevalent notions that pops up when you are dealing with cancer is the idea that somehow it’s not only helpful, but crucial to your survival that you “stay positive.” Now, in the first place, the news that I had cancer was delivered to me by a doctor who said these words, “Your biopsy was positive.” So, right there, the word ‘positive’ instantly became at best an ambiguous concept for me, if not an out-and-out dreaded one. In fact, when I looked it up as I was researching this post, I discovered that the word has, according to Merriam-Webster Online, at least eight official meanings when used as an adjective, and a few more when used as a noun. The last definition on this list is “having a good effect : favorable […] marked by optimism.” This is the one from which the various pundits and Pollyanna’s are speaking when they tell you to stay that way when you have cancer. It doesn’t matter if you’re realistic, as long as you’re positive about it. Yeah, thanks. Meanwhile, now and forever when I wait for pathology and diagnostic imaging reports, my mantra is always some version of “I hope it’s negative.” Not surprisingly, the word ‘negative’ also has several meanings, including such things as “denial, disagreeable and marked by features of hostility.” But if that initial pathology report on my biopsy had been negative, meaning “having a test result indicating the absence, especially of a condition,” it would have meant that I didn’t have cancer, and I wouldn’t have had to endure this whole sleigh ride. There are value judgments attached to all of the meanings of these two words, including the ones that are merely mathematical or electrical or scientific. Assigning a value to a result may be useful in medicine or quantum physics, but it can be harmful at worst, or inept at best to assign a value to the emotions and outlook of a cancer patient.

Delusions of Grandeur

There’s no question that being diagnosed with cancer is generally regarded as a pretty dramatic event in one’s life. So I don’t think there’s anything wrong with being in a lousy mood about it once in a while. Indeed, I would venture to conclude that anyone who was happy to be diagnosed with cancer might need a rubber room and an IV of thorazine. But that’s just me. Call me grumpy — and I’ve been called worse — but I don’t, won’t and vigorously object to anyone who tells me I ought to regard cancer as a blessing. Double rainbows are a blessing. Steadfast friends are a blessing. Cancer, ladies and gentlemen, is a disease, and a life-threatening one at that. But the friends I’ve met and made since having cancer, and the lessons I’ve learned as I faced the challenges of treatment, and the fact that I’m still walking and talking and able to help others, those things are blessings. A lot of good things have happened to me in the past eighteen months, but cancer was not one of them. It may have been a kind of conduit through which some of these good things arose, but had I not had cancer, there would have been other conduits, other challenges, other blessings. That’s the way this fate thing works. Shit happens, but mostly you get to choose how to respond to it. It’s never as simple as merely being positive or negative, whatever that actually means. And there’s something dangerous about thinking that our moods and thoughts are so powerful that they can affect events that we don’t even apprehend. The very idea makes me think of a two-year-old who wants her own way and thinks that she’ll get it by lying on the floor, screwing up her face, and kicking and screaming until her parents give in just to shut her up. It might work for the moment, but if her parents don’t learn to say no and mean it, she’s going to grow up without feeling that safety net known as boundaries and without learning what her real strengths and limitations are. In fact, it’s likely she’ll grow up to be fearful of all the things she can’t control, and disillusioned when she finds out that she can’t change most of them by being a good girl or a bad girl. Being a sensible girl is the only strategy that might help her navigate the shoals she’s bound to encounter.

“I never think delusion is okay.”

I’m not the only one to take issue with this notion that your attitude can change the world or at least your little piece of it. One of our Sistahs and a fellow skeptic, author Barbara Ehrenreich, talks about how damaging the myth of positivity is and how it can lead to the kind of greed, entitlement and denial that brought us our present economic crisis. In her new book, Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America, she discusses the ramifications of positive thinking, including how “[o]n a personal level, it leads to self-blame and a morbid preoccupation with stamping out ‘negative’ thoughts.” The quote above this paragraph is from a recent interview with Jon Stewart on The Daily Show, during which she discussed her own experience with breast cancer and how others invalidated her experience by insisting that she be positive.

The Daily Show With Jon Stewart Mon – Thurs 11p / 10c
Barbara Ehrenreich
www.thedailyshow.com
Daily Show
Full Episodes
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Here’s the thing. In my travels as a home care physical therapist, I have found that ordinary people are quietly heroic about facing the challenges of illness and disability every day of the week, and it’s not delusion and denial that help them do it. It’s the willingness to face up to their challenges squarely and honestly, with good humor, persistence and acceptance. And occasional cussing. So here’s what I say to those who push what I call the “pink Koolaid:” keep your adjectives to yourself, thanks. When I want someone to pass judgment on my attitude, I’ll let you know.


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This entry was written by Kathi, posted on Tuesday, February 02, 2010 at 07:02 pm, filed under Art & Music, Attitude, Cognitive Dysfunction & Depression, Fatigue, Fighting the Pink Peril, Survivorship and tagged , , , , , , , , , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

29 Responses to “Cancer Happens”

  1. Yeah…standing ovation for this blog. If one more person asks me "why" I got cancer I may just have to punch them. If my lovely sister tells one more person that I gave myself cancer to get attention I may just have to punch her!
    Honestly…I may need a padded room regardless of how I think LOL.
    Hugs…
    V

  2. Fantastic post as usual Babe….I only wish I could write as well as you or organize my thoughts the way you do…once again, you've hit the nail on the head, the only thing I would say I felt different about was the good humor, I lost it after the first A.C ROTF………..

    Oh and btw, stay positive hon!
    Love you!!!! muah!

  3. Have you read her book? Sounds like something I need to put on my list. To Vickie who commented first – You poor thing. You must have a selfish, self-centered and very stupid sister . I feel for you. The good news is that there are "Sisters" out there who care and aren't even related to you in blood. If she is still alive you have more in you than I do.

  4. Hey Everyone. I am a new Facebook Friend with Kathi and I just connected my Mother to this blog. I do not have cancer… yet… but I have supported my mother through it two of her three times! She just called me to say that she just received the book by Barbara Ehrenreich you refer to in the mail and is looking forward to reading it in the near future. I suspect she will be following this blog regularly although she may not manage to add to the comments very well. My heart is with you all on this rough path and I concur with Kathi on many points. I wish you all well!

  5. Hey, Coco. I am going to see if I can get Barbara's book at the library or use one of my Borders Rewards coupons to get it.

    Welcome, Tara, and I hope you NEVER have to go through this experience as a patient yourself.

  6. I love this post…I'm going to look for the book at the library tomorrow. If ever anyone told my mom to smile, she gave them the most vile look (believe me, tough guys would shake in their boots), sometimes accompanied by some sort of descriptive explicative. If they were lucky they got off with a simple FU. If she really liked them, she would tell them she WAS smiling, deal with it. Just thinking about it makes me laugh. I miss her so much!

  7. Tzimari, I'm sure your mom and I would have gotten along like a house on fire! She's sounds like my kind of woman.

  8. oh my
    i would say the worst thing about “being postive” through this nightmare (oh dear that sounded a little negative) is the catch 22 effect.
    Allow me to clarify. When I am positive (and I do try to be) as in trying to go about my daily routine in as normal a fashion as possible, I find that my family and friends seem much more comfortable. I cook for my kids when the visit, I take my parents to the Dr. I try and paint my room. They like this, which makes me try even harder, which exhausts me. Then when I have my little breakdowns, I feel guilt, for letting them down.
    Now, I know better than this. I have a wonderful supportive family who have never put pressure on me to “be positive”…I think.
    Oh, I can’t even imagine someone suggesting i got cancer for attention.
    Are they insane??????

  9. OK – not sure where this post belongs (other than out of my head). I am really struggling right now with fatigue and my husband! Every day he picks something new to rag on me about. Last night it was that I am not picking the vegetables in the garden to his (expectation). To be quite frank, I am tired of trying to live to his expectations. He like every other person in my life thinks that magically “I am all better”! Oh ya, fatique is not real, the fact that the medication takes you on one hell of a SE rollacoaster ride is not real…I should just be “all better” now. I want to SCREAM! I can’t put this anywhere but here, and I know that most of you know what I am talking about. He even decided to pick on my “cancer friends” last night – saying that is all I care about these days. Well, perhaps so, they are the only ones that friggin understand what the hell I am dealing with. I feel so alone and so disgusted with all of this.

  10. Aw, Cindy, my dear friend, any place on this blog that you want to say something is the right place for it. You know you are welcome to let it rip any time.

    I’m sorry your hubster is Not Getting It. After struggling with my own fatigue for two years, cutting my work hours way back, using up my time-off hours to make up the difference as soon as I accrued them, I clawed my way back to 30 hours a week & realized that’s as far as I can go. I just cannot work full-time, probably ever again, in this job. So, I made it official and all a few months ago, and what happens?? I am constantly having to defend my borders from intrusion by requests to squeeze in more patient visits or more meeting or more something. And these are health care folks I work with.

    Tell you what. I’ve gotten really, really good at saying no and telling people to back off, but I’m getting really, really tired of having to do so.

    Hugs, Sistah.

  11. Kathi, I LOVE this!!! I agree with you 100%, sistah!! I have lots of friends, my husband included, who think that I can “make” my cancer come back, just by thinking about it, and by being scared…. well, I am pretty sure that ALL of us are TERRIFIED that it might come back. If they aren’t, then they have a mental problem, I think….
    Thanks for all you do to get the word out to people!! Your blogs are GREAT!!! They also help me, to know that I am NORMAL….
    Love ya, sister!!

  12. Oh Cindy! Have I a rant or two for you on the “expectations of normalcy!” Big Hugs to you Sistah. I know from whence you come!

    Kathi, My Love, for once, I’m not sure you were belligerent enough. Or maybe harsh enough, or maybe “in your face” enough with this one. Dunno what the right word is–but, as usual it hits home hard and I wish you were shouting from rooftops and not kindly explaining with facts and figures in your usual calm manner!

    Love ya Sistah!

  13. Webbie, lol on that! I wasn’t feeling kind as I recall, but I was probably too tired to get more worked up…

  14. I like your attitude about the gratitude!

    Great minds think alike!

    http://ihatebreastcancer.wordpress.com/2011/04/14/order-in-the-cancer-court/

  15. I have read this post earlier but enjoyed reading it all over again today. It touched me so deeply that ended up reading it in blurred vision. I totally admire you Kathi.

  16. Amen and amen. The only person who pushed this on me was my mother. (Tells you something….) She had been part of something called the “Center for Attitudinal Healing” – which may make sense for what we lovingly call “the worried well”, but not when the issue is cancer. Mom should know, she had it twice. And aside from choosing the wrong genes and not wanting to pass them on (no kids) I did everything “right”. Ate healthily, exercised, kept my weight in the low normal BMI range (but not too low since it is a J curve after all). Still got breast cancer.

    The other view to this is that some of the people who will jump on you for cancer being your own fault are deluding themselves/propping themselves up by thinking that if they — unlike you of course because you got cancer — eat healthily, exercise, and keep their weight in the low normal BMI range then THEY won’t get cancer – that it was just something about YOU, some flaw of self, that caused YOU to get it but that THEY are immune to. (Or fear that they are not.)

    Cancer’s scary. Everyone deals with it in their own way. Like Cindy’s husband who is doing what my husband did screaming out “ME, ME, ME!” (Which 5 years later I have a lot more understanding for than I did then.) Or the people Barbara talks about in her book. Or my mother. Or a “friend” or co-worker….

    It’s our very own personal experience and we can damn well feel however we want to feel about it.

  17. Yup. People certainly can be stupid.

    And people can be wonderful. You are wonderful. This community is wonderful.

    Thanks again.

  18. Right on Dorry. Cancer sucks. Cancer is not my fault. The community ROCKS.

  19. Well, I for one am NOT ticked off by this post! In fact, I love it! Even though I have the brca 2 gene and can “blame” my cancer on that, I still get so annoyed when it’s implied cancer is the person’s fault. I agree with all your points. And the positivity thing, is one of my biggest “cancer pet peeves” which I blogged about a while back. This post tells it like it is. Thanks.

  20. You said it, girl! And the interview with Barbara on the Daily show was a great posting! Gotta read that book! You are brilliant, and this remarkable truth is the core of the serenity prayer that I use for everything! Cancer or not, we are entitled to feel our feelings and must not be told to suppress them for someone else’s idea of peace, comfort, and social responsibility.

  21. Kathi,

    I came to this posting after you recently left a posting on my blog.

    WOW!! You totally rock and totally get it. This “think positive” crapola that society feeds us is unbelievable. You tell it like it is, and your candor is refreshing.

    BTW, I just bought Barbara’s book. Can’t wait to read it.

  22. Came late to this post, but I love it. As a social worker (who worked in a hospital until recently, with palliative care/rehab patients) I can absolutely identify with your description of how you’ve seen people deal with illness. I must say this background helps free me of a sense of ‘guilt’ for getting breast cancer – I’ve seen so many terrible things happen to people who didn’t do anything whatsoever to cause ( let alone ‘deserve’ them). I think that no one in these kinds of professions could maintain a stance of “everything happens for a reason” – I will confess to feeling like punching people who say this! One interesting aspect of starting a blog in which I plan to reflect on life with breast cancer – knowing family and friends are reading – is finding ways to write honestly, without the ‘positivity mask’ that I’ve felt pressured to adopt, partly because of a desire to shield loved ones from some degree of pain. A very interesting topic, and I love your take on it. Will get my hands on Barbara E, too!

  23. Liz, as sister clinicians, we have LOTS to talk about!!

  24. Amen! Kathi, you nailed this. It is beautifully written, captivating, witty, informative, funny and packed to the gills with truth. I LOVED it! Thank you for steering me to an older post that deserves to see a new day!

    You’ve heard of brothers from another mother? We’re sisters from a similar twister!

    xoxo

  25. LOL, Renn. I’ve thought that about us from the get-go. Cyber sisters for truth and snark!! Good to know there are more of us out there, isn’t it? xoxo

  26. […] about it. I’ve lost count of how many blog posts I’ve written rejecting the notion that cancer is some kind of blessing, or some sort of opportunity to build one’s character. In fact, I was writing about these and […]

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