~'So Broken', Bjork, because it's cautious about how clever it is. And it has the tempo of certainty, necessary for persistence of the human-kind.
~Noise, properly conveys how something can mean so much to one person while everyone around that person responds with "so what?" and the resulting frustration. It's a comedy.
hi gang. pull up a strong one because i'm going to go on a teeny-tiny rant. and yes, sigh, eye-roll, it's about cancer. for those of you with the above "so what?" attitude, please, i implore you, stop reading.
but i think, after three years of being mostly out of the muck, i'm finally pissed off about it. i never got mad while i was going through surgeries or chemo; it was just something that happened. and it is, that, too. but it's starting to dawn on me that i've got this fire-eyed, clawed-creature in me that is ferocious over: pharmaceutical companies being in bed with insurance companies being in bed with the government being in bed with the doctors...and i'm most angry about: breasts.
when my first diagnosis was that i had 8 months or so to live (god that reads so dramatic), i self-denied like any good girl does, didn't tell anyone, and promised my HR department that i'd work up until the day i started losing my hair. after i had to tell my boss about the diagnosis she asked, "What is your plan of action moving forward? I'll need to know for my schedule." heh heh. what?
i told HR that i'd eventually like it if they could arrange for me to work from home because i was pretty sure, despite how i'd seen my mother dissolve, that i could do it. O readers. Sweet readers. sure, a lot of people can still work, provided adjustments. but many cannot. take a short stroll with me through Chemo Gardens!
before you begin chemotherapy (bear in mind that it's tailor-made for each type of cancer, stage, person and age), you're given The Literature. it's full of bald, smiling women with beautiful teeth and adoring husbands. i get that. for shit's sake you sure don't want the marketing company who really tells it like it is. if they passed out pamphlets showing people hugging the toilet for the sixth hour that day, or gripping their insides until their skin turns grey, or hallucinating that someone has stolen their car when they don't even own a car, i guess that marketing company wouldn't exist very long and would give over their mini-mall storefront to a bagel café or somesuch.
for nearly two years, every other week, we made a two-hour drive to my 5-hour chemo appointments. when i had surgeries scheduled, we'd stay at some hotel by the hospital. guess what they put next to the breast care center? Hooters. so, while the wives, daughters, sisters, mothers are getting their mastectomies, at least the fellas can go get a greasy burger and ogle. pisses me off.
besides losing weight to the point of being unrecognizable, you're bald as a ping-pong ball, you lose your eyelashes, eyebrows, will to live, everything you eat, if you're lucky, only a couple of toenails/fingernails will fall off. BUT, if you're lucky like i was, you still have enough leg hair to shave every other day. where the hell is the justice in that?
and, of course, no one knows what to say if you don't cut them off at the pass and make a joke of everything, and you have to make a joke of everything because people don't like sad or cranky sick people. you're supposed to have a great attitude so people can say "s/he's amazing. What a great spirit." (do the bullshit-cha-cha with me, kids.) so they're sublimely uncomfortable around you. i heard "hey you're lucky; you're saving a fortune on shampoo." how, again, is that lucky? in other words "hey you're lucky you've got this terminal illness and have lost your hair, etc". yea! hey, that's neat! i never thought of that!
my unsolicited advice: If you don't know what to say, shut up and just smile. it really does means a lot.
when i finally had the nerve and strength to leave the house after nearly two years, i had some hair. my first trip -and i was so scared because i was paranoid of getting sick or doing something wrong that made me sick again- was to see my beautiful sis LL in Petaluma. i'd not seen her since she moved up there and i made the drive. going over my gorgeous Golden Gate felt like a real milestone. we went to Bodega Bay and stopped to eat (because i could). there was a couple behind us, dining. my sister had gone to the bathroom. the young man said to his date, "I don't know why any woman would cut her hair that short. It reminds me of my gym teacher in high school...and he was a guy."
back in San Diego i went to a music festival with my other fabu sister. we were at an outdoor Italian place waiting for a pitcher of sweet, lusty beer when this drunken guy came over with a camera and said, "You know, I'm a photographer. I would have liked to take your picture, but I don't know why you've done that to your hair. You could have a nice face, but…."
what makes it even more difficult is our breast-obsessed society. they're everywhere, and it hurts. i'm trying to think of how the fellas would feel if the proverbial tables were turned. what if you saw penises everywhere you looked? billboards, calendars, jokes, men's and women's magazine covers, napkins, coasters, newspapers, television, restaurants, t-shirts, video games, postcards screen savers. it's bad enough that the images are *i'm so sorry for this* shoved down your throat, but then, what if you suffered this awful disease and survived…without your penis?
everywhere you look a reminder of what you went through and what you are without. people say "you're not your body". i am. i can't have one without the other. i want people to step back and consider, be mindful. i want to scream that cancer is fucking ugly and hard and savage. and that the "treatments" are worse than that and last forever. you are never cancer-free. it's a whole multi-dimensional miscalculated mess. i think it's happening to me now: There was no point in being angry when i was sick, but. now. i am mad.
this is cheaper than therapy. i'm going to go watch mitch hedburg and fix a drink. guh. cheers i guess.
14 comments:
I know dear. I believe/am with you.
I might have it later, I might not. I should be so lucky as to ‘not’.
My father died 5 years ago because of it. He had a lump in his throat.
Sometimes I have one too. It comes and goes. I can swallow my food easily most times, but sometimes not quite. I hope I am paranoid.
I still remember my 13 y.o. son being misdiagnosed with leukemia a bunch of years ago. Until the misdiagnose was cleared, (about 10 days) I lived through a freezing Martian winter - outside were 42 degrees. Celsius that is. You do the maths; I am European by miles/pennies and degrees.
thank zeus for the misdiagnosis of your son. a friend of mine just lost her father to it. i'm tired of it. please don't go.
You are so right! Cancer is ugly. We lost my FIL to lung cancer 3 years ago, we managed to nurse him at home right to the end, but I am so thankful that he didn't really remember the last few days, he would have been mortified at his loss of dignity. He was unable to be operated on as he already was down to one lung - lost the other one to TB after the war.
Hugs
bless your heart. my best thoughts to you and yours. undignified and ugly are understatements. they haven't invented an adjective for it yet.
people often ask me how i got through the cancer treatment, losing my hair, my breasts etc. i just got through it somehow and the anger came later. thank you for putting your words out there. it means more than you know.
thank YOU. i just saw the photo of the typewriter and your daughter. it brought tears to MY eyes.
I'd like to recommend a book to you. "When the Body Says No." by Gabor Mate. Website here: http://www.whenthebodysaysno.ca/
I have no personal understanding of what you've gone through, but this book speaks to illness and emotions and I think you might find it useful.
Best wishes.
that's very kind. thank you. best to you.
Awesome post. Society at large is not well equipped to deal with even the concept of illness, much less a young person who is seriously ill. And heaven forbid an illness affect one's femininity in any way...
Ironically, as a woman who has worn her hair short for most of the last 25 years, I also have some experience with the hair remarks. The correct response is "Did your mother not teach you any fucking manners?" ("were you born in a barn" is a good second choice IMHO). Because that's just fucking rude - there's absolutely no reason to say those things. And then if you really want to get them (and you probably should) you can add that you had chemo and watch them wilt. Seriously - shutting those jerks up is a public service.
Came here via Yarn a Go-Go...and oh my do I identify with you (I am stage 4, in remission but in ongoing treatment)...the hair (I have hair now but had some surreal experiences when I was bald, too), the anger, the everything. Sometimes dealing with other people's sh*t around cancer is as hard as the damn illness. Thanks for expressing it all so well.
I get it. Thanks for the honesty and the anger. I lost my uterus to cancer when I was 21, and I am still consumed with anger once in a while when I see a pregnant woman or hear young women talk about having babies like it's a given. Several years ago, though, I walked around in a suffocating fog of anger and bitterness all the time.
It's good for people to hear our anger, even if it's hard for them to understand it now. Unfortunately, most will likely have the chance to experience it for themselves.
Blessings to you.
Wow. What a post. Thank you for your honesty and sharing your experiences unfiltered. I've lost a number of relatives to cancer (mostly stomach) and my mom is an oncology RN. There are many, many days I saw my mom come home looking so crushed and defeated. She loves her job (has to to keep doing it I think) but she says it's really, really hard to watch even the most successful cancer treatments.
I also came from Yarnagogo; I feared I'd get upset from the warnings, but instead, just felt your words resonate. My father died two years ago, rapidly (two months from diagnosis to death) and thus began my hardest life lesson to date. The world wants everything tidily packaged and neatly arranged like a store display. Grief, anger, fear are all ugly, uncontrollable emotions. I lost friends. Because I was looking for more loss at that point in my life. (?) But I am oh so much wiser now, and can quickly separate the wheat from the chaff. Your stories make me rageful. Asshats who need their heads thumped. But, karma will take care of them at some point. And all we can do is take care of ourselves. I'm glad you are here to write & remind everyone it's our right to be pissed at the stupidity and corporate collusion. Best, Jen
I am so with you on the booby thing. The whole push behind breast cancer research funding has NOTHING to do with the women who we would like to see survive and pass on their wisdom and experience to future generations and EVERYTHING to do with saving the tits. Bake sale boob-shaped cupcakes, complete with gumdrop nipples just piss me off.
Grr!
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