For As Long As I Know How To Love, I Know That I Will Thrive

I usually don't react to blogger noise, particularly to spew like this but I felt that this post, and particularly the comments that followed it, was so ignorant and misguided that I thought I would post a few remarks here.

 

First, let's address the ignorance:

 

Chantelle writes:

 

I have a strongly negative visceral reaction to the word "previvor". I get that people want a label, but this one implies that they're going to develop a disease - which is by no means certain - and that they're the only ones who are genetically predisposed to develop it - which they can't know, because researchers have only found two genes so far that are connected to breast and ovarian cancer.

 

Fact:  BRCA carriers have a 60% - 80% lifetime risk of developing breast cancer and a 25 - 45% lifetime risk of developing ovarian cancer.  So yes, Chantelle, you're quite correct that developing these diseases is by "no means certain" but how much certainty do you require?  Given these statistics, the OVERWHELMING MAJORITY of mutation carriers, without significant medical intervention, i.e., extensive surgery, WILL get cancer.  Simple as that.  Hence the term "previvor" - a group of women who face a highly elevated, sufficient threat of specific diseases not shared by the rest of the population. 

 

There seems to be this pop psychology belief that having BRCA mutations just means that you know what's wrong with your genes but hey, doesn't everyone has some fucked up genes?  They just haven't identified them yet, so why get all worked up over this?  Ya know, live your life, drink some wheat germ shots, work out regularly and you'll be just fine. 

 

The above is an example of some especially dumb and lazy thinking.  Mutants like me are categorically not like everyone else.  If you have any doubt about that, try calling up your local friendly life insurance salesman, tell him you're a BRCA carrier but otherwise in excellent health and ask him to sell you some life insurance.  If you want to know your life expectancy, don’t ask a doctor, ask a life insurance agent.  When he calls you back to inform you that you're "uninsurable" you will quickly discover, as this study demonstrates, that a BRCA carrier, without medical intervention, has a significantly reduced life expectancy.  A BRCA1 carrier like me, without surgery or surveillance, only has a 53% chance of making it to the age of 70.  Everyone else?  84%.  Without medical intervention, nearly one out of every two BRCA1 carriers would be dead before age 70.    

 

In plain English - we die often and we die young. 

 

Yes, we are special.

 

Not in a good way : (

 

That's the ignorant part of the equation.  Now let's talk about the sadly misguided part: When people complain about the term "previvor", what they're really complaining about is the idea that people who have never had cancer somehow have the chutzpah to think that they're somehow entitled to share a collective consciousness build around a common medical burden that involves the most dreaded diesese known to humankind: cancer.  It's not about semantics but rather the whole "you never had cancer so you haven't suffered enough so shut your fucking mouth" mentality.  Chantelle's little rant may as well have been a companion piece to this similarly ignorant piece of internet shit where a self-hating mutant came straight out and said it:

 

To think that someone is deserving of a name associated with the word survivor, when you haven't actually survived anything, disgusts me.

 

Having gone through three surgeries in five months, the first of which lasted eight hours, hospitalized me for three days and had me debilitated and on pain-killers for a month, the second of which left me permantly infertile, severely estrogen deprived and dependent on my little blue "happy" pills (we don't use the "m" work around here), and the third of which scarred me from the end of one hip to the other, I take issue with the notion that I haven't "survived anything". 

 

As a factual matter.

 

But what I did and did not survive is besides the point.   Once you start playing the game of "comparative suffering", you are worshipping an idol that will lead you straight to hell.  Once you start quantifying suffering in an effort to ration compassion, you will quickly discover that there's always someone standing in line who's suffered more. Why should women who survive breast cancer get sympathy when there are people who get pancreatic cancer or lung cancer, both of which typically have much worse outcomes than breast cancer?  And why do people with DCIS get to say that they've had "cancer" when we all know that 98% of them are fully cured?  And they don't even need chemo, for fuck's sake???  How about all of those bullshit "good" cancers, like most skin cancers and thyroid cancers - why do those people have awareness campaigns ("Check your neck!") and support groups when they enjoy spectacular cure rates with minor surgeries and no chemo?  I had far more surgery than the typical skin cancer patient but I guess they get to be a "survivor" but I'm nothing identifiable - just a whiner with some crappy genes who "voluntarily" had lots of surgery.   

 

No, we can not allow ourselves to think this way.  Compassion is not a fossil fuel.   There is an infinite supply of it and giving some to one does not dimish or detract from the suffering of another. 

 

No one has a monopoly on suffering.  Or on what it means to be a survivor.  Not Chantelle, not the nefarious BRCAPositive, not Beyonce (whose definition is somewhat circular and redundant but effective in its message nonetheless).

 

I'm a survivor,
I'm not gonna give up,
I'm not gon' stop,
I'm gonna work harder,
I'm a survivor,
I'm gonna make it,
I will survive,
Keep on survivin'.

 

Comments

[Teri S.]

Ok, so I'm mad at myself for wasting all that time reading 'Chantelles' blog and all of comments. And all the negative people stating their uneducated opinions as if they were fact. Chantelle is obviously another one of those kinds of people that has no real desire to hear an opposing viewpoint, leaving a comment for her would be a waste of energy. It's very sad that there is such a lack of compassion and understanding. I'm glad that's the minority of people I come across.

[Krys]

YES! Thank you SO much for this. I'm so over the ignorance and uneducated thoughts on all of this - no, we aren't "surviving cancer," but it STILL sucks, and we STILL deserve understanding and support for what we do go through.

[Mica Harris]

Thank you for your blog. YOU have gotten me through the last three months. I have watched 13 members of my family lose their lives to breast cancer, ovarian cancer and pancreatic cancer. I am the daughter of a mutant. I am now waiting for my BRCA 1 test results with a sense of peace that I had not had until I found your blog. Hey Chantelle, F&%K you :)

[Dee]

To Krys, Teri and Mica,

Thank you so much for your comments. I am touched that somehow you found this blog and it has contributed to supporting you through the ordeal known as BRCA. I started this blog to have a place to vent about how angry I was about all of this since I didn't know who I was angry and if I didn't let it all out here, I would have turned into a bitter unpleasant beyotch that no one wanted to be around. As it is, this blog has kept me sane but slowly it seems to be morphing into something more. . . a voice of resistance, an unsantized view of what's it's really like to live with the BRCA beast, and a relentless plea for mutual support and understanding among ourselves no matter what choices we make and how we make them. I thank you all so much for participating in these endeavors.

We really are all in this together and it makes a world of difference.

[Nancy]

I am also a BRCA mutant. At first I didn't want to know, but boy am I glad I found out because my treatment path was clearly altered. Glad to find this blog cause I'll be back for more.

[online writing]

Congratulations, Your blog is a constant source of great information. Thank you for taking the time to share with all of us!