30 August 2007

I just don't know what to say about this.

By this, I mean this.

On one hand, I really admire her attitude. It's similar to the attitude John and I had: you just have to keep on living.

On the other hand, I'm listening to her interview with Ann Curry on Today, and I just can't quite get beyond this "cancer sucks, but my life is better because of it!" "I called myself a survivor from day one!" "I created a posse of 'Cancer Gals." "You can't let it define you." "I married my editor . . . it's a cancer love story."

A fucking cancer love story?

I suppose I'm just jealous that four years after getting a Stage IV, incurable, non-treatable diagnosis, she's still gorgeous and vibrant and married. That's a big part of it.

But there's something that runs deeper for me. There she is with Ann Curry, talking about how once she got her diagnosis, she started eating healthier food, being more present in the day-to-day, and not taking life for granted. I don't think that attitude is so out of the norm. She's waving her burdock root around talking about how healthy food and good friends and family are keeping her going, helping her manage her disease. Look, kids! You can get a Stage IV cancer diagnosis and hardly feel a thing! Just eat some good food and embrace life and everything will be great!

It's not that simple. John ate healthy food (although he didn't always keep it down). We could not have had a better support system. And if working every day, traveling all over the place, buying a house, having twins, and sharing a love I never thought I could feel is not embracing life, then I don't know what is. But I do know all too well that sometimes THAT'S NOT ENOUGH.

Yes, I think she has the right attitude. I also feel, though, that the reality for most people who get a similar diagnosis is not so pretty. There's an air of false hope and saccharine sentimentality to it all that I find grating. I mean, the book is touted as a "girlfriend's guide to kicking cancer tail." Come on! It's not that I want her "cancer adventure story" to have an unhappy ending. I'll just be curious to see what happens when the going gets really tough. Keeping that attitude is one thing when you're still feeling pretty good. When you feel like utter ass and your body is giving out on you, it gets a lot harder.

There's also something to her tone that implies that you are at fault if you die. You didn't do enough. You didn't take charge. Again, I know all too well that you can do everything and still come out the loser. Any implication to the contrary calls up a primal anger in me that I find hard to tame.

I suppose I'm being uncharitable. It's not nice to pick on a girl who has been told that she's going to die. And I don't feel like I've quite pinpointed what it is about all this that bugs me, other than the jealousy I feel that she's still here and John isn't.

If nothing else, Kris and I can agree on one thing: Fuck Cancer.

See lots of interesting comments on this subject over here, on I Blame the Patriarchy. (Thanks, YT, for the tip to go visit Twisty!)


Yankee T said...

I totally understand any feelings of jealousy you might have. All that aside, I totally agree with you on rejecting the implication that if you succumb, you are weak.
Do you read "I Blame The Patriarchy"? The author, Twisty, has had terrible cancer diagnoses, prognoses, and treatment, and has addressed this very issue more than once. She's a good read.
Sending my love to you.
Cancer sucks.

Anonymous said...

I'll normally watch just about any medical show on TLC, but I lasted about 15 seconds with last night's show. I'm happy that she has the time and resources to research and pursue treatment, but what about all the people who don't? What about the people who can't even access the Internet and Dr. Google to find the best docs, or even get themselves to chemo appointments because they don't have a car? When they die, are they weak, or just screwed? I dont' know, something about the 15 seconds I saw just rubbed me the wrong way.

Wabi said...

I watched part of the documentary and ended up turning it off because it bothered me for a multitude of reasons, many of which you describe. In general, it just seemed like a new version of "The Secret" marketed specifically for people with cancer. And I loathe "The Secret.

Anonymous said...

everybody wants to get better. just wanting to get better 'bad enough' doesn't make you get better. if it did, everyone would get better.
she's sanctimonious.

Sylvie said...

Did you ever read Cancerbaby's blog? She wrote a similar post, a brilliant essay talking a lot about how so many people think that "a good attitude" can cure cancer, that fighters like Lance Armstrong -- while hopeful and inspiring -- can make you think that by believing and fighting more, you will win. I guess you say it best, the way to do it is to live life to the fullest. And then be very lucky. Indeed, cancer sucks.

Sarah said...

So true. I think there's something totally American about the whole philosophy of "if _____ happens to you, it's your fault." Because we're bombarded with that in the popular press in many other areas. For example, "if you are poor, it's your fault", "if you're in Iraq, it's your fault", "if you're infertile, it's your fault", etc.

The implication is that you didn't "do enough" to get a positive outcome. Again the popular press is making sure we don't think we're enough. *sigh*

Thanks for the post from a lurker!

OTRgirl said...

It's been a slow day at work so I spent some time exploring her website, reading her blog and watching the show trailer.

I'm not sure what to say either. I 'get' the drive to seek alternative cures, to do everything possible. It's a similar feel in Christian circles when people talk about having enough 'faith' for God to heal them. Within that philosophy it becomes difficult to have a good death. As in, I have to fight and if I'm strong enough I'll beat it. There's no room to accept cancer as a journey and travel that road well, including the part where you die. As you say, the 'fighter'/'believer' approach implies a judgement on those who 'fail'.

"Here’s the deal, cancer is a just a silly metaphor, like it or not, it’s in each of our lives in some way. For me it’s tumors for you it may be a bad job, your weight or a dead end relationship etc, etc. It’s spooky but it doesn't have to be taboo. It’s just life, so we have to wake up to it!"

She's got good stuff mixed in with all the positive thinking will conquer all. In the end though it feels confusing and frustrating.

That's a LONG comment to say that I just don't know what to say...

Megan said...

Hello - my first comment, but I've been lurking a while. Your ability, and willingness, to share your story and the daily ups and downs is inspiring. Thank you for having the courage to do so. When there's a new post, yours is the first blog I read. I'm so sorry for what you've been put through. It's so not fair.

As others spoke to in their comments, the first thing I thought when reading your post is this is the same anger I feel about my infertility. The constant "relax", "think positive" messages just make me feel like I am the one who somehow failed in all this - not my body. I think it's great to share a struggle through any adversity, but those not going through that same adversity need to know that not everyone gets lucky and wins the struggle. It doesn't make them weaker, or less able, or less positive, or less in any way. Sometimes life simply deals an unfair hand.

Anonymous said...

I watched the documentary last night and I thought it was great - but mostly because I have the same type of cancer (diagnosed last year at the age of 31) and it was the very first time I've ever actually seen another person with ehe - gotta love having super-rare cancer. I love your blog, but sometimes it does cross my mind, "her husband got cancer and at least she has gorgeous twins to show for her marriage. I get a liver full of tumors and all my husband will have left is a dead wife." And I'm not saying that to be mean - in an awkward way I'm trying to say that I know just how you feel. Jealousy and cancer are a hard mix.

And I, too, disagree with the whole cancer "battle" terminology - inherently some of us will lose the fight and it doesn't mean we tried any less. I think Kris does too and that's why she tries to call it her "cancer adventure." I'm not so keen on that term either, but at least it's an attempt to change the language we use.

Lisa said...

I was also going to suggest "I blame the Patriarchy" but some one beat me to it. Here is a link to an essay about "plucky cancer attitude":

It laments that all this plucky survivor life better off-ness is detracting from some of the real issues that need to be addressed, like health care, environmental causes, etc.

But, yeah. It bothered me, too.

Leggy said...

Ditto what others said. We watch TLC a lot and my husband was more than horrified at the title of the show. We didn't watch it.

Just Me said...

I have a different but similiar experience......A number of years ago I was diagnosed as bipolar. I was told I was high-functioning and given all sorts of reasons and ways to focus on this. So I tried to.

Right around that point a book came out written by someone who was a high-functioning bipolar patient who had traveled around the country interviewing high-functioning bipolar patients. I read that book and found that most of those people did have bipolar and they had experienced devastating changes to their lives and yet remained high functioning, but unlike me they were responding to treatments. I am high functioning despite being a poor responder, despite doing everything wrong. It is just a gift, although one I pay for daily with energy, socialization, etc. The book was about people who were high functioning based on what they did as well as my factors.

I didn't get that for a long time and wound up only feeling I had done something wrong to not be fully better. It took years of illness for me to be able to understand on a personal level (I am a healthcare provider and do know it for patients, but I don't see myself the same way--again double standards) that the same illness affects everyone differently.

soralis said...

I thought that was a bit of a different show, I guess I missed her point. Each to their own I guess we all experience things differently I suppose. I am with you though f-cancer!

Lucy said...

As a cancer nurse, I think sometimes the "normal" cancer patients start feeling like shit because they aren't Super Cancer Patients like Lance Armstrong or this chick. I live in Lancetown (Austin), and I can't tell you how many of my patients both (a) admire Lance and (b) criticize themselves harshly because they can't walk from the couch to the toilet to go puke up their meager breakfast, while Lance can beat cancer and then ride seven Tours. Sigh. I certainly don't begrudge anyone their happy endings ... but I hate that sometimes others' happy endings make it harder for everyone else.

Chickenpig said...

All I can say is that she seems to be very young. The younger people in this country really seem to think that 1) bad things happening to you are somehow your fault 2) there isn't anything that can't be fixed by being positive enough, young, healthy and good looking. Because of this, so many people seem to have the "Why me? I have the perfect job, spouse, and hair?" attitude, or the "If this happens to me I'll just do XYZ and everything will work out perfect". Ahhh....to be so young. It is experience that teaches us 1)bad things happen to good people, all the time. and 2) sometimes there isn't a damn thing you can do about it except fight the good fight, and know when to let go. Of course it is important to feel positive, and to seek out the best treatment you can (that's a big DUH), but sometimes it doesn't work, and sometimes you've got the right to feel sorry for yourself, or the ones you love. I think that's why her stuff annoyed me.

Klynn said...

I haven't visited the links, but I think I understand the gist of what it's about. The perky cheerleader attitude just doesn't cut it.

My dad was a great person and didn't deserve to have his brain slowly and parasitically destroyed by cancer. He tried so hard to be positive and keep going. It didn't work.

If this chick has beaten the odds, and done well with her positive outlook, fine. Wonderful for her. But have some f'ing tact and consideration for those who fight the good fight and lose painfully.

As another example (in addition to the infertility one already posted), think of the micro-preemie babies born to crack addicts who pull through and go on to thrive. Are they any better...did they try any harder than the micro preemie born to the hard working, church going, upstanding middle class mother who has to bury her much loved and wanted infant?

Oh, I could go on with tons of examples of the inequities of life. People that say "just have a positive outlook and work really hard, and you too can have good things happen...look at me"...they just piss me off.

Life's not fair and cancer f'ing sucks. We all do the best we can with what we have.

Sorry about the rant, Snick. And sorry you had to read/see that stuff. I know it still hurts. (((HUGS)))

Kate W. said...

I have been reading for a while and wanted to say how much I admire your strength.
As for the show? I couldn't even get past the Title-- just gross.

mlg said...

I completely get what you are saying. My 12 year old is in a wheelchair and I just get a little tired at times of hearing people in chairs (especially adults) talking about how good it has been for them. Face it, no one wants to be in a chair. No one wants to have cancer. I respect anyone's right to deal however they can. I just wish it was as politically correct to say out loud, "this sucks a lot. Why did it have to be my kid? This is a nightmare." Instead I have to say it to friends in hushed voices, trying to hold back tears.

It is a funny rock and hard place to be between. "Experts" say I am not supposed to tell her it sucks because she may take it as a direct comment on how I feel about her. But I am pretty damn sure I am not supposed to tell her how great I think it is that she can't play softball with her friends or how neat it will be to go to school dances and sit there awkwardly because what 12 year old boy knows how to dance with a kid in a chair? argh!

leighs said...

I read your post on this with interest; what so often gets left out of this discussion is that some people DO survive longer than expected...but no one really knows why. Yay for her healthy food choices and yoga classes...but are these things responsible for her "winning" her battle? Maybe, maybe not. THERE IS NO WAY TO TELL. I dislike Lance Armstrong's belief that his mindset has helped him beat the odds. Maybe it did, maybe he would have beaten the statistics anyway. So much seems to be just random bad luck, but we are in a culture that has a hard time accepting that things can happen that are nobody's fault. And, your twins are gorgeous!

Mrs. d. said...
This comment has been removed by the author.
Mrs. d. said...

I completely agree with you. My husband was diagnosed yesterday with carcinoma. The "Crazy Sexy Cancer" documentary was on TV last night and I thought I would watch it. I thought I would find an inspirational story of a woman kickin' cancer's ass. Yeah, she seems to have done that, so why do I also want to punch her in the face? I agree with you that her attitude is very much that she beat cancer because she ate well and practiced positive thinking. Ummm...that, and the fact that she was incredibly LUCKY.

So sorry about your loss Snick. I have been reading your blog since February 2007, never dreaming that I too would be facing life with 2 kids and a husband with cancer. I find your blog a source of incredible inspiration and hope. Thank you.

Anonymous said...

Snick -

I don't like it, at all...with the work I've done with ACS over the years, this is an issue that has come up more times than I can count, "why does it have to be a battle that you WIN or LOSE", and not just different "outcomes". Luck...i agree that's a part of it that folks just don't talk about, sometimes you get lucky with the treatment, for some reason it works different on one person from another, they all are fighters, I've seen too many patients that the one commenter described, why can't I do better like Lance Armstrong, why can't I be a better fighter, why...I hate that some are made to feel inferior just for the situation they are faced with, not because of anything they have done or not done...and let's face it anyone who has had a diagnosis of cancer or had a loved one going through it (which is pretty much most ALL people when you start to think about it) they DON'T FUCKING FEEL LUCKY. I know i've said on my posts before in so far as Emily is concerned that I was grateful for the "family" we gained through her diagnosis and treatment, people I otherwise wouldn't have known and loved....but I'd give them all back in a heartbeat if it meant she never had to have cancer.

Cancer sucks, and to do a good service to those who will face it in the future, the way I deal with it, is I try and get support for the systems that will benefit them, research, funding dollars for programs that provide coverage and resources, better healthcare coverage, better work place policies so that you can have time off to recover, heal, get treatment. What is available to the wealthy in terms of resources should be available to everyone, that's what I'll work for.

Love you, Mean it!

stacey said...

Your feelings are TOTALLY understandable. My NON-smoking, health food eating, gym going mother was diagnosed with Stage IV lung cancer. We did everything you're supposed to do and more: meditation, exercise, yoga, positive thoughts, shitaki, flax seed and more burdock root than Whole Foods could supply. We BELIEVED 100 percent and with complete unyeilding faith that she'd survive. We didn't accept failure as an answer. We were gonna kick cancer's ass and send her triumphantly into the 2 percent miracle winner's circle. She never made it there and passed away last month after a fierce 2 year long struggle.
Now I'm left with the feeling that all of our positive support for winning the battle was just a grand illusion and that perhaps we just unintentionally misled her into believing she even had a chance of remission. Some types of cancer, like Livestrong Lance Armstrong's, are survivable but others, like the lung cancer my mother had, are not. It's not all the same. You can't positive thought and health food yourself out of cancer. It's amazing how that show maked me feel like my mom died because we just didn't believe strongly enough. That's kind of the message I walked away with. It grates me too.

Anonymous said...

I watched her documentary on Lifetime (yes, I watch Lifetime sometimes!) and to say I had mixed feelings was putting it very midly.

I was on the fence until the very last line of the movie when she says that life is scary, crazy, huge, sexy, etc. "just like cancer."

Then I read an interview with her where she says she meant that a woman can remain sexy and she knew the word would be problematic to some people.

Bullshit. She used the word because it sells books and it's an easy trick.

I'm glad she's currently well. Truly. But to add "sexy" to the list of things that women dealing with cancer are supposed be aiming for is just total and complete horseshit.


Mijk said...

I lately read a post somewhere from an american girl wo had worked in europe who said we told children they couldn't do anything they wanted and didn't encourage them enough. We americans she said when we want something we get it because we do anything to get it.

It disturbed me more then just because I am a proud european. It disturbed me because what she said is basically saying to children: "When something rotten happens it is your own mistake you should've worked harder. When you are born poor and in a rotten situation you don't need our sympathy because you should've worked yourselv out of there and when you get cancer you probably didn't like living enough. It is just stupid. More then that it is a way of thinking that allows you to think it can't hapen to you. But hey it can and it might....

Monday I'll start my anual door to door begging for the dutch cancer foundation and I will think of you and John and the kids.. an all those other people I know who loved live and still lost to cancer

dregina said...

Oh, I COULD not agree with you more. My Dad died after being sick with Multiple Myeloma for 2 years, and I have to cram my fist in my mouth when people starting spouting off about the power of a positive attitude. What is it about cancer that makes people believe you can just smile it away? A positive attitude is a wonderful, life-enhancing thing to develop, but IT DOESN'T CURE CANCER. My partner's little brother starting going on a few months ago about the connections between attitude and cancer, and how if you think positively, not only can you beat it, but you can never get it in the first place. I looked at him and asked, "Yeah? How do you explain pediatric cancer, then?" It caused a very tense moment at the family table, but I just couldn't help myself. Thank you for this post, Snickollet.

Anonymous said...

Well, I guess she is entitled to feel what she feels, and if it helps her, great. At least she is spouting all that positive thinking crap from real experience, meaning, she has cancer, and that helps her somehow. When I was going through infertility, there was nothing harder to hear than "oh, just relax, that's what my friend did, and it worked for her," the "friend" no doubt being someone who didn't get pregnant the first time she tried, so was more relaxed the second time she tried, and poof! it worked.

I also have a huge problem with the whole praying hard thing. I am currently spending a lot of time reading a blog of a woman who has stage 4 breast cancer, and also has three young children. She attributes good things that happen to people's prayers, and her faith in God. I see the comfort that it brings her, and I would never begrudge anyone that comfort. But if her good response to treatment is a result of answered prayers, what does that say for the person whose treatment went poorly? Not enough people praying? Not praying hard enough? God was busy that day and didn't hear the prayers? I have a real problem with God as micromanager, just as I have a problem with the power of positive thinking. Too much burden.

Anonymous said...

Really, really good point.

So if what she's saying is true, then the opposite--the men, women and children who die of cancer every single day--weren't *trying* hard enough or weren't positive enough? I wish she'd think about what she's saying and implying to everyone who's lost someone to this horrible disease.

Since my login isn't working, I'll sign this Michele in Oregon. :-)

It's about time I stopped lurking, huh? And yes, we're ON for December if you're here! :-)

Anonymous said...

Yea, that was my thought too. I agree w/Sylvie (I think it was Sylvie) who talked about Cancerbaby's post about Lance Armstrong etc. I loved CB, and she and I had a good discussion about this.

First, because we are huge cycling fans in our house, we love Lance. I have a lot of respect for him because of what he has done, w/or w/o cancer. And he has raised a truckload of money for both support and research, so of course, that's great. BUT - and this is a big BUT - it wasn't just his positive attitude that helped him beat cancer. It wasn't just believing, it wasn't just wanting it badly enough, it wasn't eating the right foods or taking the right supplements, etc. No matter how I look at it, it implies that my mother, who was only 2 months away from welcoming her first granddaughter, didn't want it enough, or that my father-in-law couldn't hold on long enough to be at our wedding .... or that John didn't want to be w/you and the twins. That's utter BS, and I'm sure, for the most part, not really what they meant. However, I think it's highly irresponsible, especially as a cancer survivor, to tout that you have the answers - because what worked for you will not work for anyone - and it may not work for you in the future. And, like everyone else, not that I wish anything bad to happen to her, but I just can't sanction further burdening already suffering families and cancer patients w/such guilt.


Linda said...

I've been reading your blog for a few months now but never really commented. I saw a commercial for this show, was curious but was afraid I'd tune in and end up really upset. My dad passed away from lung cancer earlier this year so I thought seeing someone go through what he did would be tough to watch. But, the show was not what I expected. It rubbed me the wrong way too... I don't even know how to explain what it made me feel. But I agree with all that you've said. She just makes it sound so easy and it isn't. Also, it made me mad (and guilty to think this) that she might live a looooong time and be fine, the tumors may stay stable and she'll be fine. And my dad didn't live long after his diagnosis... and a lot of people I know who got cancer didn't live long either... I don't know. I feel guilty saying that her being so happy made me mad. But it did.

terri c said...

Snick, I understand you all too well. We in the US especially have a horrible time acknowledging randomness, luck, that the worst can happen in spite of everything. So that people who are healthy, who are beautiful, who are rich, who have good outcomes with treatment tend to believe that these positives are due to THEIR CHOICES, to WHAT THEY HAVE DONE, because it helps them (and helps us as a culture) feel as if we are in control of our fate somehow. We are not, in so very many ways. While it is true that some people find great strengths and truths through adversity, that is not an expectation that should be made of anyone. I have multiple physical abnormalities, and at one point I got so sick of people asking me why I thought I had needed to "create" that reality that I was tempted to inquire why they thought they needed to create the broken jaw I was there to help them experience... Snick, it goes without saying that I wish with all my heart that John could have had such a positive outcome. It is painful enough that he died, without anyone thinking that "if only" he, or you, had done this or that, or thought this or that, he would be alive.

Jolene said...

Amen sister. I couldn't even get past the title. what the F*CK is so sexy about cancer?!? I'm with you on this one.

FingKASIL said...

I agree with a previous commenter that the real danger here is that, if cancer proves terminal for you, then it's your fault because you weren't "positive enough." In fact, the not-so-subtle message is that it may have been your fault for getting cancer in the first place, and if you don't get on the lemons-into-lemonade train, then it's your fault if you die.

Cancer sucks. Sometimes you can figure out why people got it, sometimes you can't. Sometimes the treatment works, sometimes it doesn't.

Let me link you to a friend of mine's blog. Here's all the perspective I need.


vicki in NC said...

I'm late to chime in. I've just found you through the alittlepregnant blogging network.

I am deeply saddened by the sorrow and grief you've had to endure with the loss of your husband to pancreatic cancer. As I know very well, the horrible depths of it are infathomable.

I lost my own husband at age 44 on 20 Sept 2005, just 49 days after being diagnosed with adenocarcinoma of unknown origin.

And as you know all too well (and have so stated so eloquently), cancer is a fucking beast. There is not a g*ddamn thing even remotely SEXY or FUNNY or ROMANTIC about cancer. Crazy? Yes. Definitely that.

Still just fuming over this. I am truly sorry for her diagnosis, but how dare she?

outre said...

This is really late in commenting but I came across this and am happy to see that I'm not the only one who did not agree/like/was WOWed by Kris Carr and her story.

Yeah the girl has stage IV cancer, but that doesn't always mean death right than and there. Her cancer is indolent. She'd probably alive still even if she wasn't positive, ate 'better', did all the alternative bs. I'm angry that her actions might have caused people to believe healthy positive thinking/living will help their cancers held at bay. ..and yeah that stuff won't hurt in addition to standard treatments. Considering she didn't get any for the fact that conventional treatments do not work for her type or sarcoma, and all she did was alternative treatments, it makes it seem like the alaternative treatments work 'better'.

Does she understand what it's like not to be able to get tests you need because of insurance reasons? Or have your doctor breeze in and out because there isn't a camera in their face to make them, force them to answer your questions and take time with you?

She's a girl full of herself who doesn't understand cancer community and prob wont' know she did disservice.

WendyB said...

I found your blog via CNN and somehow this old post came to my attention. I just want to empathize with you on the pressure of "a good attitude and diet will cure you and if not it's your fault." If a good attitude was the answer to everything, we'd all live forever because who wants to die! Of late, I must admit I have indulged in a little Schadenfreude as some "good attitude" people I've known for a long time have had to cope with (thankfully non-terminal) illnesses that all the kale, acupuncture and laughter in the world won't fix for them. So now they keep their noses out of other people's business. Life has a way of teaching folks humility! Best of luck to you and the twins.