Saturday, March 19, 2016

Beyond the Pink: UnderWire for the Bra-less

I have Ovarian cancer, but I think I need to address Pink Girlfriends before I can get further, and so that I can get further..

Breast cancer women seem to have pretty good odds compared with us Ovarian girls. With meeting so many breast cancer "survivors," I began to believe that death from breast cancer was an uncommon event. Until finally I began to meet people who were approaching imminent death from breast cancer.

There is a little blind spot where breast cancer women are not survivors, nor are they particularly playing with pink. But they're not dead yet, either.  In a way, each day they're living life under the wire.  They do so much, they live so much, but for the most part they remain unseen. 
We wail death and cheer survivors, but our women who are in the process of dying, but not dead yet, are almost hidden from all of us.

Breast cancer is so greatly publicized that it really sets the bar for all cancers in general. (Meaning a high-jump bar  vs. a Bombay gin-fizz at a medium-height bar. But we could always adjust to suit).
We all get to meet lots of people who have had breast cancer. Pink ribbons everywhere. Lots of perky, happy, breast cancer survivors. In pink. Or with pink accessories. Go Pink!

A pink cap on a bald head is a magnet for breast cancer women and their friends and relatives, who are a fabulous bunch to have rallying around you
Imagine stepping out the door and being surrounded by a pack of sorority girls who just voted you as Top Girl.  That's what breast cancer women do to other cancer patients. Total Feelgood. 

They'll even act that way toward me if I have no cap at all and am just walking around as a baldy with no eyebrows (not quite as pathetically as you would think from this description).  Hugs-kisses-cheers-encouragement. Wow. Go More Pink!


In 2014, (the first time I lost my hair from chemo), my kids were too embarrassed to be seen with me unless I wore a wig (caps didn't cover enough). 
Dropping off the kids at school one day, I hid in my car wearing a baseball cap (to further hide my wigless head), before my kids left the parking lot to cross the buses-only driveway to their school. The school driveway is covered in permanently-painted pink ribbons. (Perhaps, I pondered, in a discreet tribute to all the women who unwillingly wear caps and shrink down into cars under social pressure to disguise chemo side-effects).
That day was special--a breast-cancer rally.  My kids wore pink, accordingly, and as they stepped out of the car prepared for the big day they urged, "Mom, don't let them see you." That hurt, but it was OK. Some people just don't get it, even if they're your own kids.

My friend sent me a huge, beautiful cancer-girl basket from IIIB. Fantastic. Very feminine. Totally thoughtful, even to the little stuffed lamb to keep your seatbelt from getting too close to your breast site, the angel candle, the pink neck pillow, a million things. By golly, they even used Pink Chiffon as packing material. Loved it.  (Thank you Natalie!)
Breast cancer continues its upward spiral in sophistication. Women support women so well.

I'm fortunate enough to also meet the breast-cancer women who are NOT the fun-jumpy-pink survivors that many of you see.  I get to meet the tired breast-cancer women who are waiting with me in the cancer center to get scans or blood draws or whatever.
At cancer centers, you meet people who make the rest of us patients look like wimps.  
Sit next to someone who is literally dying in pain, and you'll realize that yes, despite an upbeat approach to whatever uncomfortable treatment you just went through that won't cure your own terminal cancer, you STILL qualify as a wimpy-complainer compared to the person you're chatting with. 

What was a little scary--with all of the pink ribbons and sponsored runs and fundraisers and awareness activities

I still had no idea of how a woman could actually, really die from breast cancer.  
Do You?   I mean, really?  Do you?

 
These were my guesses: 
1) Breasts expand from cancer until maybe the woman just ulcerates to death in some way.
2) Cancer gets into the tissue behind breasts and then spreads around like an infection to maybe the lungs and heart.
3) Breast cancer goes into the lymphatic system so strongly that you can no longer fight infection. Then the cancer cells spread from lymph nodes into neighboring tissue and slowly they take over all of your normal body cells, using your lymphatic system as a super-highway.
4) I actually hadn't thought far enough to come up with anything better than those three.

By golly, was I wrong wrong wrong. 

OK, so after years of breast cancer awareness campaigns, what do we really know except for the fact that it exists? How women actually died from breast cancer was all so new to me.  
I asked a few family and friends--they didn't know eitherWe really had no idea. 
My beautiful aunt died of breast cancer.  And still, I didn't know much about cancer when I found out (or even once I got cancer myself).  
"Dying of Breast Cancer" is the new "Dying in Childbirth."  We accept it, and don't know how or what to ask, so we never really understand what exactly happened there. It's time to start asking.

How do people work so hard on breast cancer awareness campaigns without most of the populous knowing in what way breast cancer could become fatal?  
Or when the pain starts?  Or, after a woman has mostly healed from a double mastectomy and the cancer comes back, where does it hurt then? Or does it? 

So here it is:

Breast cancer kills you in one of three ways: 
1) by spreading into the bones, 
2) or liver, 
3) or brain.  
Those three. That's it.

I had no idea.    But does it hurt?   

The woman I met the other day has breast cancer cells growing all over her bones, but not inside them. The cells are growing on her skull, too. 
"Does it hurt? Can you feel it? 
Nope.  
"Does it feel just like a bruise, maybe?"
No, I can't feel it at all. But when the cancer gets inside the bones, that's when you start feeling it, that's when it'll hurt. My breast cancer like to go up. It all wants to go to my head. It's already on my skull but today I'll find out if it's going into my brain or not.

I wonder if women who do not receive regular medical care suddenly show up for mammograms because of Breast Cancer Awareness efforts. Really?
And I wonder if women who do pursue regular health care. . . wouldn't they get a mammogram anyway?

If the general public has no knowledge of how breast cancer women actually die from breast cancer, how are us old quiet hens with Ovarian cancer supposed to feel hope from the "awareness" paradigm?  
Ovarian cancer is "The Silent Cancer."  But maybe the women who are actually dying from breast cancer are somehow silent, too. If you buy a pink coffee are you really learning or just feeling better about getting wired? 
 
Ovarian cancer awareness. . . we could follow the pink ribbon with a teal one, but maybe "awareness" isn't good enough. "Awareness" is actually a pretty vague term, isn't it?  It doesn't really emphasize learning, does it?   
"Oh my son is really aware of math in school."
"My surgeon should be good, he has lots of awareness."
"We went to a cancer awareness dinner and the duck wontons were fabulous." 
"I have a PhD in Awareness" 

Is is just me or is "awareness" very 1980?
I think we can do a little better than "awareness."
Our Ovarian Cancer bar needs to be higher.
Or maybe our seats need to be lower. . .Working on it. . .