May You Live in Interesting Times

It’s an election year, things are heating up on TV, the campaign route, and on Facebook, so it must be time for me to pontificate.

I feel we are out of control as a nation.  I also feel that President Obama is doing the best he can, but that doesn’t mean I agree with everything he says or does.  And I feel that both the conservatives and the liberals are often mean and bullying in their criticisms of each other.  I see a lot of humor being used as democrats express themselves concerning the GOP and the current crop of presidential hopefuls - mostly because I love Colbert and Jon Stewart.  But the conservatives tend to not have a sense of humor about these things and they fight back in a mean way.  I think if we all took a good look at ourselves, we would find some humor in our behavior and in the behavior of our politicians and policies.  Without humor, we really just have anger and tears left, and I’d rather have humor.

As to the HHS mandate concerning birth control and abortion, here are my thoughts:

Women and men should pay for contraception out-of-pocket if it is not medically necessary.  At what point in time did we begin to think that insurance was supposed to pay for these electives? 

I have a health ailment that requires I take daily medication or I will die a slow death.  Guess what – insurance no longer pays for this medication – and it is medically necessary.  Why aren’t they paying for it?  Because the insurance companies want me to use a different brand of medication.  Unfortunately, the other brands do not work as well for me, so I am forced to pay out-of-pocket for medication that I need to live.  So, quite frankly, women and men can pay for their own contraception. 

Many of my friends in the world of cancer have had to deal with insurance denials for medications and treatments that they need in order to continue battling cancer.  CANCER.  So, yeah, pay for your own contraception.  That’s what we all did a few decades ago.  Quite frankly, it’s fairly easy to not get pregnant.  It’s not as easy to fight cancer. 

Here’s a resounding 'get over it' to all those who feel their rights as women are compromised if insurance won’t pay for contraception.  You are not entitled.  You are not being denied contraception.  You just have to pay out-of-pocket for it.  Big deal.

Abortion.  I am far from an expert on this touchy subject.  I’m pro-choice for political reasons, but anti-abortion for personal reasons.  A few weeks ago, I set out to understand the Catholic perspective so I could better comprehend their anger at the HHS mandate.  Unfortunately, my Catholic friend became more than a little annoyed at me for all the questions I was asking so I had to stop questioning her.  What I found on the internet was a lot of wackiness that made me think people had really lost touch with reality.  (Well, my version of reality, that is)  So, since my one Catholic contact wasn’t able to continue helping me, I had to turn to Jewish teachings online.  I found this amazing essay: 

http://caae.phil.cmu.edu/cavalier/Forum/abortion/background/judaism1.html

I have to say, this essay really helped me to understand a few differences between Catholics and Jews.  In particular, I loved the explanation of the different ideas of souls and Baptism.  I was also happy to learn that “Pro-life” means “pro-mother” in Judaism.  The essay goes on to explain that when a Jewish mother’s life is in danger, an abortion is mandated.  So, if all abortion is made illegal, that is a violation of Jewish religious rights. 

With all that being said, if an abortion is not medically necessary, then insurance should not pay for it - this is an elective procedure.  I think that as long as we maintain our right to choose, we’ve succeeded.  But don’t ask others to pay for your abortion.  You are not entitled.  So, another resounding 'get over it' is called for here.

Should Catholic institutions be forced to provide insurance that pays for contraception and abortions?  This I’m a bit fuzzy on.  On the one hand, I agree that they should.  On the other hand, I agree they should not.  I’m out of hands, and really don’t have a leg to stand on where this topic is concerned.  But I know that two of my Catholic friends are very upset by this, and when something is upsetting my friends, then I’m upset for them, too.

Much of what I’ve read on the internet comes from Catholic publications which are pushing the fact that the birth control pill contributes to breast cancer.  But so does alcohol consumption and being overweight, if you didn’t know.  Unless you never drink alcohol and you have a perfect BMI, I really don’t think you can use breast cancer as an argument against using The Pill.  The Pill also protects against ovarian and endometrial cancer, which is far more difficult to detect than breast cancer.  Let’s move on…

Does abortion contribute to breast cancer?  Notice that I am using the word “contribute” as opposed to “cause.”  Here’s a fact that not too many people know:  many of the women I know who are under the age of 40 and developed breast cancer, developed breast cancer while they were pregnant, or soon after giving birth.  It makes just as much sense for me to conclude that pregnancy causes breast cancer as it does to conclude that women who have had an abortion may get breast cancer.  We have no idea if those women who aborted their babies would have gone on to develop breast cancer if they had given birth, or if they had never gotten pregnant in the first place.

I find publications that push the abortion and breast cancer angle to be opportunistic and exploitive, and I believe they are praying on the fears of women. 

And just because I like to promote vegetarianism –

“Pro-life” should mean “pro-all life.”  Not just the life you choose to fight for.  If you determine yourself to be “pro-life” then I would hope you are doing your best to not eat meat, fish, or fowl.  If you are picking and choosing which life is worth saving, then I strongly suggest you take another look at yourself and what you stand for before pointing fingers at others.  Murder is murder, whether it is the murder of a cow so you can purchase a cheap hamburger at the drive-thru window, or the murder of an unborn child. 

Each of us has our burdens, and none of us is perfect (especially me).  But when I made my decision on abortion, I also made my decision on eating animals.  I’ve been thwarted a bit here and there by situations outside my control, but I am always striving to improve.  I hope you are, too.

Best Facebook Game EVER!

So...

I wrote a blog post about how insulting those FB games are when they use the guise of raising awareness for breast cancer. Seriously. How does making people think you are pregnant promote awareness for breast cancer? You can read the post here.

While I vented and spouted off about it in my blog, my friend Sally actually did something about it. She's that amazing.

You can join the cause here.

• Hello. My name is Sally and I am 42 years old and have Stage IV (metastatic) breast cancer. As we approach October (or Pink-tober) and all of the Breast Cancer Awareness campaigns, facebook games, etc, I believe we can do something less about the pink and more about the green. I hope you will join me in spreading a real message about breast cancer to all of your friends. My goal is to raise $41,000 dollars, 1 dollar for every life lost to breast cancer this year in 31 days. How you ask? Just like the viral "awareness" games spread and forwarded around the world via social networking, I believe we can do the same thing and have a real impact in the fight against breast cancer. Did you know that 100% of breast cancer deaths are due to metastasis? Did you know that approximately 41,000 women and men die each and every year in America alone from metastatic breast cancer? Did you know that less than 2% of all money raised for breast cancer research is used to research metastatic breast cancer? Knowing these facts is awareness. Doing something about it is action.

Please go the link above and pledge a few dollars - $1 is all that's being asked. But forward the information to everyone you know. And if you've ever posted your bra size, where you put your purse, your shoe size, or thought it would be fun to make your FB friends think you are pregnant, then pledge to not do so ever again - and instead, tell people about this campaign.

As Sally said, "Knowing the facts is awareness. Doing something about it is action."

Breast Cancer Awareness FB Game? Who are we Kidding?

And what a day I had today!

Birthday, homework, work, Facebook, get spat upon by people claiming to care about breast cancer awareness, state my case, get unfriended by said people who claim to care about breast cancer awareness....and so on.

People are weird.

But, the whole thing did turn out to be quite the sociological experiment.  I am an anthropologist at heart.

For those who don't know what I'm talking about, there are these insipid FB games going around that are supposed to raise awareness for breast cancer.  But for those of us who have been diagnosed with breast cancer, they can be pretty insulting.  And for those who have not been diagnosed, they seem to offer a non-challenging, albiet well-meaning, feel-good, "oh look at how wonderful I am," easy thing to do that doesn't cost them anything.

The first time around we were asked to post our bra color.  Um, really?  For a bunch of women who no longer have breasts, this can be kind of hurtful.

Then there was the one where we were supposed to say, "I like it on" and then list where we put our purses.  "I like it on the kitchen table."  Or some other stupid nonsense.  Mildly risque?  Because NOTHING says sexy better than mutilated bodies!

And now we're supposed to list our shoe size.  So, women's FB statuses will say "7 inches," etc.  Again, could be mildly suggestive.  And shoe size has EVERYTHING to do with whether or not you will survive cancer.  EVERYTHING. 

(Edited to add the new game) The latest game has women state their birth month number as weeks and then say they are craving their favorite candy.  So, mine would be "I'm 8 weeks and craving Reese's Peanut Butter Cups." This is supposed to make people think you are pregnant.  What, exactly does this have to do with breast cancer awareness???  Here's some awareness for you: young women undergoing cancer treatment often lose their fertility due to surgery and/or the side-effects of the treatments.  So after having their ability to ever have children taken away from them, you want them to now participate in this awful game that makes people assume these women are pregnant.  WTH?  Grow up, Facebookers!

(Back to the original post)
So, here's where the sociology experiment comes in.

My cancer chick friends like to post about these games and, oh how we laugh.  We post something in response about how these games do nothing to raise awareness and help no one and how they are often hurtful to those diagnosed with breast cancer - to trivialize the deaths of our friends, etc.  And after posting, wow!  Sit back and watch the fireworks go! 

You see, people support breast cancer awareness, just not actual people with breast cancer.

Today I posted what I thought was a well-worded, but strong (in order to get attention) response to the shoe size absurdity.  The result was a whole lot of people jumping to support the person who had posted the game, and not one single person saying, "Oh!  I had no idea."  Not asking for an apology, or anything, just trying to, I don't know...RAISE AWARENESS FOR ACTUAL BREAST CANCER. 

I was called bitter and angry (I'm not).  And then, the woman who posted the game unfriended me.  Because, apparently, it was all my fault (I assume).  How dare that breast cancer survivor tell us our breast cancer games are offensive!  The nerve!  We know better than those breast cancer survivors!

And don't think this was an isolated occurrence.  It has been the result for most of us who have posted a "please don't" response to these games.

So, here's the real deal - those games do not raise money for breast cancer research.  They do not save lives.  They don't do anything.

If you want to show your support for breast cancer awareness, donate money to charities that are helping actual people get mammograms/ultrasounds/MRIs.  Donate your TIME.  Clean a cancer patient's house, cook them some food, take the children for an afternoon.  But don't think that saying "7 inches" on your FB page is doing anyone any good.  One person said that "it's better than doing nothing." 

No, it isn't.

Here is exactly what I wrote that inspired the craziness:

As a breast cancer survivor connected to hundreds of other young
women diagnosed with breast cancer, I can tell you that we hate
these games.

Our lives are not games. Our friends have died.

These games do nothing to up awareness for breast cancer.

Instead of participating in these so-called games (that often
offend cancer survivors), please donate money to charities that
are out there working hard to help those diagnosed with cancer.
The Pink Daisy Project is a grass roots charity that helped me
when I could no longer pay my bills after (Edited for privacy) all because of cancer.

Don't trivialize our struggles by making them a game. Shoe size
has nothing to do with breast cancer awareness.

If you've read this far, then take a look at what this woman wrote. She's a much better writer than I am:

https://www.facebook.com/home.php?ref=home#!/notes/alaina-jenkins/im-897-days-and-im-craving-a-cure/10150282871371200

I am a 0

Today is my birthday.

And the start of my cancer season.  Cancer season is a season one celebrates alone, generally in quiet reflection, silently checking off each cancerversary – diagnosis date, surgery date, start of treatment, end of treatment, etc. Most non-cancer people have no idea that many survivors do this.  But each and every day, minute, and second is counted and tallied – for the first few years at least.  And lest you think cancer survivors are morbid, we also celebrate the cancerversary when we actually FORGOT it was our cancerversary.  And on this day, my birthday, I also shed a few tears for my friends who are no longer with us.

Birthdays are really, really important.

My cancer story is my own.  I had what some of us call Cancer Lite.  Or, a non-invasive cancer called DCIS.  And though I was “lucky” to find my cancer early, I somehow found myself in the midst of an amazing sisterhood of young women with breast cancer.  Because of them, I had someone to talk to in the middle of the night, and people to coach me through the difficult times. I knew what to expect throughout treatment, and I received great advice on how to work full-time and somehow get to daily radiation treatments, how to dress, how to get through the day, what to do when the pain and fatigue got to be too much, and what to do when my skin started falling apart.  There is no cancer user-manual; there is only the advice from those that came before us.

Many cancer survivors have their stats committed to memory: 1 cm, multifocal, grade 2, w/ comedo necrosis, ER + 50%, PR -.  Currently NED. And though I’m not that great in science, I’ve studied all my treatment options, drugs, and side effects.  I never took statistics in college, but I’ve become a semi-expert in what my absolute risk vs. relative risk is.

So you see, I’m stage 0.  Not that we identify ourselves with our cancer stages (all the time), but it is often on our minds.  My concerns are completely different from someone who is stage 4.  And though there is a world of difference between 0 and 4, camaraderie, love, and support know no boundaries of stage.

This is my “other” life - the cancer patient life.  It’s pretty darn lonely except for a wonderful online community.  So thank you, “sisters,” for all you have done for me.  Now if you’ll excuse me, it’s time for some reflection, some tears, and some laughs.

Sometime in the future, I'll talk about how I despise the term "survivor."

If you have some extra change, please consider donating to:

The Pink Daisy Project, a fabulous grass roots charity that directly helps women diagnosed with breast cancer.  They helped me tremendously.  http://pinkdaisyproject.com/

Libby’s Legacy is a central Florida charity that paid for my mammogram, ultrasounds, and three biopsies while I was unemployed.  http://www.libbyslegacy.org/donate.php

And the YSC – Young Survival Coalition – who created the space where I met all these amazing women.  http://my.youngsurvival.org/