by Band Back Together | Oct 7, 2010 | Breast Cancer, Cancer and Neoplasia, Denial |
What came first, the chicken or the egg?
Did I first find a band of brothers that could be there for me, through life’s ups and downs, and use them to help, should shit get rough? Or, somewhere in the back of my mind, did I know that through all the denial, something was about to come up that I was going need back up for?
I have found so much respite, joy, strength, laughter, camaraderie, hope, humble…wait, is humbleness a word? (I think, “been humbled by” is more appropriate but it didn’t fit grammatically.) And I feel like what I have to say right now will betray everything I have found. I will betray what has become my family, mi familia, and they don’t even know how important they are to me.
I’m all over the place, a grammatical idiot, probably fucking up my spelling to the highest (even though I am a middle school spelling bee winner!)
I want to be irreverent and funny and take it all in stride. I want to have the strength that these women who have had horrible illness, sick babies, miscarriages, lost of loved ones, painful break-ups have. I want them to still want me as part of their band. But I know what I am doing… or not doing…is so wrong..and I don’t want to lose them. I am making every excuse, cutting every corner, and not hitting it head on.
I am so sorry if I have pretended to be someone I am not.
(Christ on crutches, I sound like an insane crazy person.)
I have developed relationships here and on The Twitter that I am so vested in. I’m afraid to tell you. Will you still want me, after you have survived, you have fought, you have won, you have lost and I finally tell you my secret?
I have a lump. A sizable lump. My left breast has hurt for about a month. I have done nothing about it.
Because what if it is something? There is NO ONE here for me.
My Chelle Belle. She would be devastated. She reminds me constantly that she doesn’t know what she would do without me. When the ache first started, we joked, “what the hell would I do if all the sudden you came to me and thought you had The Dead ? You can’t have The Dead? What would I do without you?”
So I can’t tell her. And my Bean, my beautiful Baby Bean…what would she do without me? There is NO ONE for her besides me.
Her dad? The 40-year old Roller Derby sensation, who has been on the verge of eviction for the last 5 years? The one who only makes time for her if it’s one of his championship roller derby bouts? And she can find her own transportation to it? At 17?
Or maybe my mom, who is living on my couch right now. Acts like an addict even when she isn’t using. Until this morning, I thought had been in jail for the past three days for driving with no license, in a car with bad tags. Any minute now, she’s going to find the next great thing in American health care. Which means that every morning, I hand out bus fare to my mom and my kid. And at around 3PM, everyone calls me to ask what’s for dinner. Well, at least Chelle is only calling because she knows I’ve forgotten to defrost something. She’s home and will happily do that for me.
Because, when the kid is 17 and the mom is crazy and the partner is a musician, you only worry about that ache in your boobie the third time you toss and turn. Which only happens at about 2am, when the dishes are done and the dog is walked and the clothes are pressed and the homework is done and YOUR homework is done, and work clothes are clean and school clothes are clean and your kids who AREN’T your kids are tended to and you’ve gotten a little strength from your blogs….
And you still feel like you failed because there are dishes in the sink and you didn’t exercise, no matter how much you bitch about your weight, and that paper could’ve been better and, have you seen the ant brigade making a home right next to the fridge? and the lawn needs to be done and the job is trying to kill you and the floor needs to be vacuumed and the beautiful jungle you loved when you got the house REALLY needs to be pruned before it eats one of the poor babies walking to the bus stop on your corner and there are only 3 paychecks before Thanksgiving and it’s at your house this year and…
And…
There is a lump on my left breasticle. And my boobies hurt. And whatever that means, I just don’t have time for it.
But I’m gonna call my doc – the same doc who has NEVER met an ailment that a vegan yoga lifestyle wouldn’t fix, thank you Government HMO – I’m gonna call him tomorrow. And I’m gonna try to make time for an appointment to go see him before I’m due in Kansas City for 6 days. But I’m scared. And I’m sorry to all of the women who are probably cursing me out under the credo of early detection. Because I just know its bad. And I don’t know how to tell anyone. And I am surrounded by people who can’t care and listen because my job is to care and listen.
And I’m scared, terribly scared.
And I just need someone to be there.
And I am so sorry for asking.
Update: So after writing this last night I was a mess and clearly had to tell ChelleBell what was going on. And then i frantically found Aunt Becky on the Twitter and asked her PLEASE DON’T POST THAT. And because she rocks my socks off, AND has probably picked up on the fact that I have roving bouts of the Bat Shit Insane, she agreed to put the squash on it. But now I know how important all of that was to get out, and I feel like a total punk after the stories you all have shared here and my apologies for not trusting you. And I’m feeling so much lighter today.
And just called my doctor.
And I totally am having cupcakes for lunch.
by Band Back Together | Oct 7, 2010 | Anger, Breast Cancer |
I want to sue Susan G. Komen.
I want to sue Playtex gloves, Campbell’s Soup, Glad wrap, and every single corporation making money on the carnage of cancer. I want compensation for the last 7 Octobers shoved down my throat with pink ribbons and “awareness.”
How dare you. My physical rubble, my scars, my rib cage, my bones remember the day my breasts betrayed my body – I still had a baby at home to hold.
How dare you paint me pink. And to place your pink interpretation of my experience on mundane housewife products? Insult, meet injury. I hear some effed-up patriarchal focus group somewhere, dudes kicking back, women wearing men’s suits trying to live with the fact that they sold out. This is what they are saying to me with every pink ribbon: “See…I even own this; you are a woman and you mean nothing more than cleaning products—and if I can, I will whore you out to make money.”
I thought we’d come a long way, baby?
…baby?
Psyche, join hands with your old friend despair, as we walk through the aisles of life in October and are hammered by image after image of a pink ribbon and the plethora of pepto-bismol shaded products I am supposed to buy. Does a kitchen sponge really make a woman get a mammogram? Is the dog food manufacturer really giving money to breast cancer research? I want evidence. I deserve evidence. I want the lab report on the efficacy of the color pink to reduce incidence of breast cancer. I want evidence that demonstrates that just seeing a pink ribbon on a golf ball increases the chance a woman will do a self-examination.
My body was hijacked by a disease at 36 . Hacked up, hacked off. Nerves cut, nodes removed. Home in time to hold my baby and play with my toddler. Dead tissue, dead sexuality, dead eyes meet mine every time I look in the mirror. Each October, my “recovery” is held hostage by corporations who sell their products with pink ribbons on them. Another invasion. Another intrusion. More and more mocking and belittling by those in power. I have to fight to “survive” October.
Oh October, I am tired of surviving you, and the other traumas of invasion that make me qualified to use the word “Survivor”.
Susan G. Komen, Avon, Revlon–you take one good look at my daughter’s 7-year old face when she sees the wreckage of my body. See her naive disgust, confusion, and fear that it will be her fate as well. See her try to piece together why her mother has no breasts, no nipples, no evidence of being a woman. Look directly into her eyes when she asks if she will “get it,” and I dare you to hand her a pink ribbon.
I want to sue Susan G. Komen.
by Band Back Together | Oct 7, 2010 | Abuse, Animal Abuse, Fear, Grandparent Loss, Pain And Pain Disorders, Psoriasis |
Let’s take a look at some things that are total bullshit right now.
Psoriasis is bullshit. The itching, the peeling skin, the pain. People staring at me. People making nasty comments about me, asking to be moved to a different table so they don’t have to sit near me, avoiding any chance of touching me. All bullshit.
Medications to treat psoriasis are bullshit. All the damage it can cause, the extra blood tests needed, the worsening of the itching (and to think, I thought it wasn’t possible to itch MORE), the dryness, my lips chapping and bleeding even though I’m practically attached to the chapstick tube. All bullshit.
My best friend’s Grandma died yesterday, and the best I can do is help her by editing a couple of letters she needs to send, and being there online. Because she lives several states away, and I can’t just go hug her and tell her that she can relax and cry, and that I’ll take care of the huge list of things she has to do. That she doesn’t have to hold it together alone. Bullshit.
That people I don’t even know online have lost people so very special to them, and there’s not a damned thing I can do to help. I read their words, and I can relate to how they feel, but I can’t find the words to help. Instead I’m sobbing my heart out for people I’ve never met, and wishing that somehow, I could make it just a little better. All bullshit.
I’m afraid to walk from my car into the store because my purse might get stolen again. I should not have to live in fear. Fuck you, asshole, for stealing my purse, and part of my confidence. It was really fucking hard to get that confidence, and it will be even harder to get back there again. Total bullshit.
The Mate is in constant pain, and no matter how much I want to, there is no way for me to make it better. He’s on so many heavy-duty drugs, and still, he hurts all the time. Medical science can find a way to build robotic arms and legs, and no way to help him with the pain in his spine? Bullshit.
Animal abuse. I don’t even need to go into how many animals are out there suffering, and I can’t fix it. I do what I can, I have more animals than I can easily take care of, I transport, and still, there are so many more out there suffering. It’s all bullshit.
Parents that are assholes, abusive, nasty, whatever. I had them, and I hate that anybody else might have to go through something similar to what I’ve gone through. I HATE IT I HATE IT I HATE IT. I just want to gather everybody up in my arms and some how make it better. And I can’t. And that’s bullshit.
There is so much more bullshit I’d like to cover, but I’m having trouble typing through my tears, so I’m going to go hug my dog, find some tissues, and try to figure out at least one bullshit thing that I might be able to fix.
by Band Back Together | Oct 7, 2010 | Diabetes, Guilt, PICU, Special Needs Parenting |
It’s 1:30 in the morning, and we’re having the worst week since my daughter’s diagnosis of Type 1 Diabetes. Insane blood glucose numbers, ever-increasing insulin needs, ketone testing…and the endless blood sugar testing. My daughter is a pin cushion, and I hate myself each time I jam another needle into her skin, when she winces, but doesn’t say anything, when it hurts badly enough that she says “Ow, that one hurt,” it feels like razors cutting my heart to ribbons.
170 days since the diagnosis. 170 days since I leaned against the wall in the hallway outside the emergency room and allowed myself the luxury of five minutes of tears. 170 days since I called the ex-girlfriend and the midget’s father in the middle of the night and told them to get to the hospital NOW! 170 days since I watched them strap my daughter to a gurney and load her into an ambulance. 170 days since I heard the term “PICU” and realized that’s where my daughter was going. 170 days of trying to readjust to normal, and realize that nothing was ever going to be normal again.
170 means at least 700 finger pricks and 700 injections. And that’s assuming that every day we only test four times and give four injections. Which never, ever happens. When she runs high, I give insulin corrections, then check again to see if she’s come down. When she runs low, I give sugar, then recheck to make sure she’s gone back up. Not even six months in and she’s had 1500 holes poked into her body.
I’m sitting here at 1:30 in the morning waiting for it to be 2AM so that I can test her again, and then lay down and try to sleep, but I know that I will instead spend the rest of the night waking up every thirty minutes to make sure she hasn’t gone low in her sleep. If she does, she doesn’t wake up, which could mean…I can’t even bring myself to type the word, can’t bring myself to use it in conjunction with my beautiful, precious daughter…but it would be very bad.
On the other hand…when she runs high all night like she has all this week, I think about all that sugar in her blood, and the damage it’s doing to her body, knowing that it’s coating the blood vessels in her heart and her eyes and her kidneys, another layer of damage, bringing her that much closer irreparable harm. It sickens me, makes me physically ill, makes me want to scream and cry.
170 days of wishing that I could take her place for each finger stick and injection.
170 days of wishing I could take away her type I diabetes.
170 days of wishing there was a cure…
by Band Back Together | Oct 7, 2010 | Encephalocele, Neural Tube Defects, NICU |
Even in the NICU, she made her temper known. Her furious bleats echoed from the previously calmer walls, disturbing the other tinier occupants and their parents, and I had the good grace to feel sheepish as my daughter wailed fiercely, her gigantically fat legs and arms pounding against the sides of the isolette.
“Let me the fuck outta here!” she hollered without saying a word.
I echoed the sentiment, with my own words, of course.
My daughter, she is a fighter.
At birth, my Amelia Grace, the fighter, born with her brain hanging from her head, she disturbed the entire labor floor with her angry screams. Indeed, one of the only clear memories I have of her birth is her shrieks, so loud, so furious over the grievous sin of having been forced to be weighed.
(I, of course, feel precisely the same way every Friday when I am weighed in, but, you know, I am much more in control of my tantrums, so I can shriek QUIETLY before having to see the number on the scale)
This trait, this fighter trait, it has never left my daughter, my warrior girl, and it is with intense pride that I see her furiously beat her hands against the floor, shrieking in anger over some injustice, because it is so familiar to me. She is her mother’s daughter and she should know how to fight.
Yes! I say to her, YES, my brave, sweet girl, you FIGHT against it. You get good and god-damned mad and you take that anger and you channel it into something good and you use it for all it’s worth. That is the tiger in you, my child. And you let that tiger out and you let it ROAR and God HELP anyone who gets in your way. That fight will remind you you’re alive.
My little Amelia is a warrior.
If anyone should be born with the spirit of a warrior, passed so handily down from her mother’s DNA, I think it should be a daughter, someone born with the odds stacked so heavily against her.
Still, she doesn’t speak to me and tell me the secrets of her heart, although when I look into her deep brown eyes that mirror so closely my own, I can see them there, just below the surface. The Little Prince was right, what is essential is invisible to the eye. And when my heartstrings pull painfully in my chest, imagining the times when it will be so hard for her, I comfort myself in knowing that the warrior heart that beats within my own chest beats within hers as well.
The secret place, the land of tears, well, that will be hers alone, as it is with all all of us.
As I look at her, awestruck, often bemused by her anger, flared up by the terrible injustice of having been told, “no, no we’re not having candy for dinner,” I never forget how lucky I am to have her by my side.
Her speech therapy will begin soon. She’s operating at quite a delay, backsliding from even where she was several months ago. So now we put on our platinum battle armor, polish our diamond coated swords and get ready, because it’s time for the fight to begin.
My Miracle Mimi, my Warrior Principessa; it’s you and me against the world, kid.
So watch out, world.
