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 | Anger, Anxiety, Coping With Divorce, Divorce, Loneliness, Marriage Problems, Sadness, Shame |
It was August third, 2001. A Friday. It was hotter than Hell outside, and it had been a long week. We’d talked about what we should do that night, and going out to a movie seemed like a good idea. I made dinner. We ate. You went upstairs to take a quick shower: “to wash off the day,” you said. I lay on the couch under the ceiling fan, dozing, and waiting for you.
When you came downstairs, I stirred. You smelled clean, ready to go. You sat on the loveseat across from me and said, “I need to tell you something.”
The rest is a blur, really.
I remember hearing the words, “I’ve been thinking about leaving” come out of your mouth and hit my ears like boiling lead.
I remember simultaneously wanting to vomit, hit you and run away.
I remember screaming, “NO! This isn’t high school! You can’t just ‘break up’ with me!! We took vows! In front of our friends! In front of our parents!”
I remember having a hard time catching my breath and my top lip swelling like it does when I cry really hard.
You were cold, despite the August heat. Firm. Unswayable. I wonder now how many times you’d practiced telling me that you were done. I wonder if you rehearsed in the shower and in the bathroom mirror just before you came down the stairs: “I’m leaving. No, I’m thinking about leaving. Yeah, that sounds better.”
I ended up begging you desperately: “Anything. I’ll do anything you want, just please don’t leave me,” I said. But your heart was closed. You were already gone.
The rest of the month was almost unbearable. The heat. The shame of explaining what was going on. The feeling of utter abandonment and failure. Hearing you move around upstairs in our bedroom while I tried unsuccessfully to sleep in the guest room below. Moving through the days numb, dreading my return home from work to see your things slowly leaving in boxes, headed for your new apartment. Crying on the phone to my mother and my friends about how you’d changed my chemistry and how there was no fucking way I was going to be able to go on without you.
And then it was September, and—just like that—you and the dog were gone.
I moved into a shitty eighties town-home that I loathed. My last living grandparent died, and I felt nothing. The Twin Towers fell, and I began to fall apart. I had one-night stands. I drank alone—something I’d never done before. And when I’d start to get disgusted with myself, I’d blame you. If you just hadn’t left me, none of this horrible shit would be happening to me. I’d be at home with you and the cats and the dog, hanging out. Being your wife. But you didn’t want that, and everything had turned to shit.
Somehow, I woke up each day and lived my life. By April, I’d lost forty pounds, dyed my hair aubergine and pink, and gotten a promotion at work. I began dating. Then one day I looked at the calendar, and more than a year had passed.
I was still alive.
Life was still happening, even though you weren’t a part of it anymore. Big, important shit was going on, and it was no longer my first impulse to pick up the phone, call you to tell you about it. And one day, I woke up, and loneliness and abandonment were not the first things I felt.
Letting go of my anger toward you was a like digging to China with a teaspoon in the desert sun. I hated you and wanted bad things to happen to you. I don’t anymore. I survived you, and I want to thank you. You leaving taught me how strong I am. You showed me how deeply I am loved and supported by my friends and family. I’d always suspected as much, but when you left, I became more confident of that strength and love than ever before, which set the foundation for the biggest challenges, the most terrifying and thrilling adventures and deepest love of my life.
by Band Back Together | Oct 6, 2010 | Multiple Sclerosis, Stress, Trauma |
Three years ago, I was diagnosed with MS. It took about six months from the time I first saw my neurologist to get the actual diagnosis, but he and I were pretty sure we knew what it was from the beginning. I loved my neurologist.
When I say “my neurologist” I actually mean my second neurologist. My first neurologist was a ball-licking douchebag with the bedside manner of a used tampon.
For a couple years before I was diagnosed, I felt “off.” My memory wasn’t as sharp as it had been. I had occasional periods where I would lose my train of thought. I had periods of shaking and twitchiness and I often felt like I was in a fog. My primary care doctor sent me to Dr. Douchenstein, who spent all of five minutes with me at my initial appointment.
He examined my eyes, asked me how I felt, banged my knee with the hammer and said he thought I was fine…but if I really wanted to pursue this….*deep sigh*….he would go ahead and order an EEG.
When my EEG came back with “some small slowing in the left frontal lobe,” he said it was no big deal. He saw nothing remarkable and that there was no seizure activity indicated on the EEG.
In short; I was fine.
I saw him about 9 months later and he spent even less time examining me and indicated that no further tests were necessary. I could see the receptionist on the way out to give her my co-pay. Wham-bam-thank-you-man.
My primary care doctor believed something was wrong, though she didn’t know what. She sent me to see a new neurologist and this dude was the polar opposite of the first one. The initial appointment was over an hour long and he asked about everything.
Through his questioning we found out something very interesting.
As a child, I’d remembered taking an orange liquid-filled capsule. I’d stopped taking it when I was around 16 or 17 and I never knew what it was for. The truth is that when I got old enough to question what it was, I had taken it for so long that I didn’t think twice about it.
Dr. Raddude had me ask my mom what the pill was for and (finally) at age 40, I learned that I had petit mal seizures as a child. You would think that would be the kind of info I would have known, but nope. With this new information in hand and an extremely thorough initial evaluation, the doc went to work investigating.
Approximately 15 MRIs, a CT scat a PET scan, two EEGs and a spinal tap later, I had a diagnosis of multiple sclerosis. I was having small seizures still but honestly, at the time our focus was on diagnosing the MS. The diagnosis of the actual type of seizures has been in the last month, mainly because they’ve returned and have been getting worse.
MS affects everyone in different ways and for varying lengths of time. If you’re not sure what MS actually is, it’s a degenerative disease of the nervous system. It’s not fatal, but it does lower your quality of life. There are four types of MS and each is slightly different than the others, but there is one common thread: no two people will necessarily have the same symptoms.
My symptoms tend to be dizziness, loss of balance and coordination, dropping things, stumbling over my words or slurring words, losing my train of thought, straight up forgetting things (things that I should absolutely know) and (this may sound funny, but is NOT a joke) I had one more symptom in my head to tell you, but I cannot remember what it is. Whatever it is, it’s kind of new to me and I was going to tell my doctor about it, but as I said, I forgot to write it down.
When I was first diagnosed, I was in the midst of my first big MS attack. It lasted about a year, and in that time I had to use a cane, could not walk more than a block or two without getting completely exhausted, had to write everything down in order to remember it, fell I don’t know how many times, including a half dozen times in the shower and went through a two-month period where I needed to sleep 16-18 hours a day.
This wasn’t stay-in-bed-like-I-have-depression, this was sleeping because my body needed the rest. My neurologist said it’s not uncommon for some MS patients to go through that and it completely sucked for me.
Throughout all of this, I had full custody of my daughter. Luckily, I had nearby family who could help me out. For a while, I was having a hard time with doing simple things like fixing dinner. There were nights when I would try to cut veggies and my hands were shaking so badly that I was afraid I would cut a finger off. Other nights, I repeatedly dropped whatever I was carrying–plates, food, knives, you name it.
I couldn’t drive for almost a year because of the dizziness. Luckily I got state disability for six months, but was denied SSI. Why? I really have no clue. The crack medical team that evaluated patients for Social Security was holed up in a shitty storefront office with 1970′s equipment and they said I didn’t need it and that was that.
Assholes.
The kicker was the woman I was dating at the time. She is a RN at a very well-respected hospital and one night she told me this, “If you can’t work and can’t do the normal things you should, what good are you?” And with that, she dumped me. Swell, huh?
For two years, I did pretty well. The symptoms were minimal and except for a couple of small episodes I remained symptom-free. Until about two months ago. Things haven’t gotten as bad as it was the first time. Yet. Maybe it never will. That’s the thing with MS–you just never know.
Since the first attack I’ve moved far away from my family. I have a new neurologist that I absolutely love. She’s as thorough as the first one and is the one who actually diagnosed my seizures as Juvenile Myoclonic Epilepsy or JME.
Thanks to the seizures, though, she is pulling my drivers license which means I need to look for a new job.
My current job requires a license. Plus, I deal with people on a daily basis and it’s tough when I keep stumbling over my words. I’ve been mocked by some co-workers on a regular basis as well. A couple of days ago, I was standing in front of my boss’ desk for about five minutes and we were talking. In that short time I dropped my pen three times. He never said a word, but the last couple of days I’ve had co workers pass me in the hall and drop whatever they had in their hand. They will generally bend down to pick it up and say something like, “clumsy me.” It’s childish and makes me feel both pissed and like less of a person–though I know I’m not.
Things are starting to suck ass again, but it’s not the end of the world. I have a couple of friends here that I can count on and I have a wealth of them back home and ones that I’ve made through my writing. I consider Aunt Becky (ed note: I love you, yo) a close personal friend and I would help her in a second if she needed it.
The bottom line is this: I have MS and JME and they will both (to a degree) diminish my quality of life and will make things more difficult for me, but neither disease is who I am. I will find a way to get by. I’ve taken this and put my own touch on it. I occasionally have to use a cane, but I found one that has flames painted up it.
It looks way awesome and it’s my way of looking at the MS and the JME and saying, “blow me.”
