Tuesday, December 30, 2008

New Gold Stars

I am a stubborn, loud, scrappy individual.
It would seem silly to assume that this stupid cancer ( a haywire cellular version of myself) is anything less.

So, Christmas Eve came with some not so great news. Could be because of all of my mocking of the Caucasian Jesus-Mary-n-Josephs. (I'm sorry Brookside-Boulevard-nativity-scene-putter-uppers, Mary did not look like a Rockwellian Gweneth Paltrow). Could be. Could be simply that cancer is a nasty evil thing that wants to live just as bad as I do.

The big bad ugly chemo isn't working as well as The Captain had hoped. The lymph nodes in my neck have gotten a little bigger. The tumor hasn't gotten any smaller. The skin involvement hasn't decreased. I can't have surgery yet.

Fantastic!

But there are other methods to try, other means of beating this fucker back. Instead of Napalming my entire body, as we've been doing since July, The Captain has decided to use a smarter, more targeted type of Chemo in the form of pills. I had no idea it even came in pills. The pills have names I cannot even begin to pronounce. I will take twelve of them a day for a week or some other such insane regimen. This part isn't over.

Sometimes I feel like I'm on some really messed up trip to Mordor.

I cry like I sweat. Most girls "glow" or "perspire". Most girls let loose one angelic Hepburn tear. I sweat like a linebacker and I cry like a six year old.

The good Captain, unnerved by my weeping, set out some new plans of attack. One of his ideas was to have me skip this awesome stuff (Adriamyacin and Cytoxan) that's made me so sick. We could reconvene in two weeks and go from there with the pills. The pills won't make me so sick. For a minute that sounded like a gift. To not feel this bad for two whole weeks, fourteen whole days! Think of the minutes. Praise little Caucasian baby Jesus! But the chemo is doing some work and to let my body off of it would simply offer cancer an easier window to slip through. I told him to string up the drip. I'm stubborn, not stupid.

I've spent the last four days laid out by the nasty crap I voluntarily put in my body. Worse than the worst chemically induced recreational hangover I've ever had. Worse than waking up licking the asphalt in the Soldier Field parking lot. Worse than the shot-for-shot Jaegermeister incident of 94'! Worse than all the rest.

I am a proponent of the gold star. I love a gold star. A solid mark of measured accomplishment. As we get older there aren't so many (*sigh*). I guess I believed this bad trip would come without setbacks if I just applied myself. I come from an "apply yourself" people. Abigail, apply yourself! See, gold star! Easy peasy. If I just roar long and hard and mean at this thing long enough it will just wither and die. No. This thing will roar back. It is made of me. And how do you apply yourself when getting out of bed and into the kitchen without puking on the dog seems like it should come with triumphant theme music? I freak out a little (more than usual) if I cannot measure progress and feel as if I'm failing. And failure is not an option. Really....

This is not a linear journey. I have been fooling myself into believing if I just put my head down and kept one foot in front of the other than it would all be alright. I have not failed because its not alright. It just isn't alright. It's cancer, not a women's history final. It will get less not alright. I just have to give up on the idea that setbacks can't happen. They will happen. And I'll get through it.

So nasty bitch cancer, you may be mean and roar big and bad but I'm going to roar back, meaner and louder, and guess what- I've got thumbs fucker, so I win!! Kiss my gold star! I win because today I didn't throw up on the dog, so HA!

Cue the theme music.

Monday, December 22, 2008

Sweaters and Fools

It is the beginning of longer days. December 22nd and we begin crawling into longer hours of daylight. No one has told the temperature fairies however because it is "powerful cold" out there. If the actual air temperature goes into the single digits, its really not even worth mentioning. The alarmist weather people are simply mocking the idea of warmth when they say things like "And including the windchill, it feels like 26 degrees below zero....". Thank you. I'm not leaving my house. Until April.

I can't however. The last round of Chemo happens Christmas Eve, and I need to be there. I'm going to wear my closest approximation of a Holiday Sweater. It's green. Sans reindeer or glittery appliqued elves, but green nonetheless. It will look particularly striking offset by the giant cherry red tubes of Adriamyacin the poor nurse lady will have to administer. What sort of gift do you get someone who manually injects poison into your veins? I bet you Emily Post can't answer that either. If I could I would get every single one of those lovelies a Villa in Niece, a pony, a box of chocolates. Oncology nurses are made of some brass, yo!

So this bit is ending. Though I am insanely glad and want to run about in footy pajamas, I am strangely apprehensive about what happens next. I've got a handle on this chemo thing, these weird poisons running in my veins. I never thought, back in August, that I ever would. Funny what is possible when you have no choice, eh?

So surgery. Surgery? Will I go into fits? Will I play in traffic in its aftermath? I don't know. I will tell you this, however; I want this nasty beast gone, gone, gone!! Away from me and my family and my friends. Gone away so there will be no more fear and awfulness. I just want the thing gone. The thing happens to be dying off in my left breast. My rational brain ferociously wants it gone, cut off, removed, physically not on me anymore, And take the other one too for that matter because I'm not going to dance this dance again.

But then my heart, the same heart that searched out second and third opinions, the same heart that tried to find another solution, that heart...that heart isn't so sure its that strong. To which my rational head says "Get over it, wussy pants. You can't win lying down!!" I think that's true. You can't. Grieve the loss and get on with it. I don't have a cold. I have cancer. Intense navel contemplation is a luxury I cannot afford.

It is a character flaw. Yes. I know. It likely has a name. I see things in black and white. I recognize it. It's possible that it's a defense mechanism I've been mastering my whole life for this exempt purpose. Who knows. Is it healthy? I don't care really if it gets me up in the morning. People fool themselves all the time with far more dangerous excuses.

My resolution for 09' is to not suffer fools.....(and I, in my own silliness, am included). I have very little time for bullshit anymore.

Tuesday, December 9, 2008

First Snow

Christmas. A word that strikes fear in the hearts of men.

When I was a kid, the official start of the Christmas season came with a familiar trip down Second Avenue (on the bus) on a day rather like today. My mother was always irrevocably moved by the first New York City snowfall. It didn't happen often, and the snow never stuck around for longer than eight minutes, but it would be on a day like today after I got home from school that we two intrepid souls would venture downtown and engage in the Manhattan Christmas tree buying ritual.

My mother is about five foot three...in a hat. A wee person. I was young, 5,6,7...not much taller. The snow would begin to fall and my mother would wax on about its beauty, winsomely winding a woolen scarf about my neck. Then she'd dig around for her snow boots and her weird, fluffy winter hat. She'd whistle "Chestnuts Roasting on an Open Fire" in the elevator downstairs. And together, arm in arm, we would set off into the city's first snow to buy a Christmas tree.

The blissful holiday magic, however, sort of ended there. Usually about the time we got to the bus stop.

My mother was the sort of New Yorker who disdained cabs. Cabs were an extravagance. The subway. The bus. These were the legitimate modes of transport. She usually walked everywhere, but with a six year old in tow she conceded to a bus ride down to Hell's Kitchen. It was cold, I remember. Northeastern winter cold. Her whistling would quiet and I would begin my overtures as to how cold my feet were. But it was Christmastime.

I don't know why all the Christmas trees in New York were sold on 23rd Street but they were so there we would travel with our fellow Midtown dwellers, like we had seen a star or something. We had come to this place, by foot, by bus, by pachyderm, to haggle for the best deal on a live Fraser Fir. And it had to be a Fraser Fir. None of those other trees that lost their needles (!). No, no it was going to be a real live Fraser Fir and she was absolutely not going to pay full price for it and $50... you've got to be kidding and where did you think you were, Westchester? To watch my mother work a tree lot was a thing of beauty.

As a kid, wandering these makeshift evergreen dealerships was like walking through a sidewalk forest circus. They'd go on for blocks, populated by the most wonderful assortment of unsavories trying to sell you one thing or another; a Rolex, a dime bag, a Cabbage Patch Kid. More often than not, wearing a Santa had and sucking on a cigar. I would always stand next to the 14 or 18 foot trees, trying desperately hard to convince her that our apartment was, in fact, as big as The Met. "Yes, yes it will too fit, Mommy!!", lamenting the fact that our measly 8 foot ceilings were going to ruin Christmas. Pouting often ensued.

But finally, as the pretty snow had given way to miserably windy, raw cold, my mother and the tree-dealer would settle on a price not insulting to either of them. The tree man would "tie it up" for free, which is the evergreen equivalent of trussing a turkey. And then, deal done, tree gotten, my tiny mother and I would begin to drag that Fraser Fir the twenty-odd blocks back to our apartment.

This is where the Holiday fun really started.

I was a kid. I wasn't used to being out late in the cold on a school night. (That's my best excuse for ridiculous Holiday behavior). Three blocks into it, I'd start in about how I was so cold I was going to sit down and die of cold to which my mother would respond how she'd hate to leave me on the sidewalk for all the crazy people, but she would if I didn't stop complaining. Not receiving the appropriate response, I would start in on how we'd passed two bus stops already and how the bus was the warmest place ever and that I would personally convince the bus driver to let us have a tree on the bus. My mother would remind me how mean New York City bus drivers were and how our tree was so big the bus wouldn't even stop. Hopeless, desperate, and thinking about nothing but hot chocolate I would start in about how if she really loved me she would get a cab and how other kid's Mom's didn't have weird hang ups about cabs, especially at night when it was so cold with a tree and everything......

It was usually about this point when she would throw up her hands in exhaustion. Flushed and freezing, she'd remind me how Santa was watching to which I'd smart-off something about his reindeer at least having fur coats. At wits end, she'd finally give in and make me sit on the Christmas tree a few feet back from the street (because cabs WILL NOT stop for anyone with a Christmas tree, kid or no kid, snow or no snow), swallow her pride and hail a taxi. After several pulling away with mention of the word "Tree", eventually a kind-hearted cabbie would take pity on us. I would, of course, do my absolute best to look desperate and in need of warm chocolaty beverages. The cabbie would tie the tree to the roof and all the money my poor mother had saved in the haggling would be spent on the tip for the driver who helped drag the tree inside.

Every year. It happened like that every year.

Christmas is not about trees or presents or lights or dinner parties. Its not about Jesus or wise men for that matter either. It is about memory.

This day, (some may say arbitrary, some may not) happens at the end of every year where the memories of all the year's past days sort of culminate. It is impossible to escape. It is burned into our collective knowing. Christian, non-Christian, consumer, non-consumer. Where were we last year? It's a benchmark. It isn't as desperate as New Year's Eve. Too much of our childhoods were tangled up in its ribbons, for good or bad. The remembering is deeper. There is more hope in it. Hope in memory.

December 25th is three days after the shortest day of the year. In the darkest part, where the light is weakest, it is a mark of a quiet beginning.

Evergreen.

Tuesday, November 25, 2008

It's (not) Only Temporary

I feel as though I have been failing at the blogging lately. I blame it on the debilitative napping. I can take pain all day. Pain makes me mad. Pain keeps me up. But the accumulative effects of chemo makes me ridiculously TIRED! And tired is really a bitch-ass excuse not to do anything. Which, yes, makes me mad, but then I get very sleepy and the anger fades to dreams. And the dreams are weird too. I feel a little like the mouse at the Alice in Wonderland tea party, sort of round and sleepy and wearing a silly hat.

About the hat. I'm so done with the hat! I'm done with not having any hair. It's cold. I am reminded every time I look at myself that I'm sick. I don't know if I'll actually feel like I'm getting better until I grow some damned hair. The cutest hats in the world can't cover up the fact that I used to have several feet of long blond hair that I miss daily. Yes, I miss it. I miss it like you miss someone who went on a long vacation. I've had long hair my entire life, like I've had green eyes and a funny sneeze. And I know, I know "It's only temporary!" I hear it all the time from the best intending folks. But it's not temporary right now.

So I saw the good CAPTAIN Thursday as they shot the last of the crazy-mean platinum stuff in me. Two more rounds and I'm done. But like every light at the end of every tunnel, you can't always be sure its not a train. This was sort of a train. I have two more doses of chemo (yeah) except it will be considerably nastier than the stuff I'm used to. It will make me sicker. I will have both in quick succession, only two weeks apart, so recovery time will be shorter. And to add to the holiday fun, I'll be having my last round on Christmas Eve. Not quite sure how to think of that one. "Honey remember the Christmas Eve we spent in the chemo room? Nothing like some Cytoxin and a 100-calorie snack pack to celebrate the season!" Messed up as that may be, my last chemo was supposed to be on New Year's Day. As far as I'm concerned, the universe can just have my 2008! I'd rather keep all the bullshit squarely in the cosmic vicinity of last year. It would be a bad omen to begin 2009 plugged into a wall.

I had a genetic test done two weeks ago to determine if I have the BRCA1 or BRCA2 genes. For all y'all who are unsure what post-industrial goth band I'm talking about, the BRCA1 and BRCA2 genes have been marked as hereditary indicators for breast cancers within families. My family tree is riddled with cancer. My aunt died from the disease I have (IBC) before there was a name for it. My mother has been fighting cancer for 15 years. It is a disease I had become acutely familiar with before I was diagnosed. The very nice GENETIC SCIENCE LADY was convinced I had at least one of the genes, as was I, but I can convince myself I have anything if given the chance. Cancer makes you spooky.

I don't have the genes. That's what the fancy pants test showed. I call bullshit! I think I have some special secret mutant gene that hasn't been discovered yet. My genes are just waiting for Columbus or Magellan or Cartier. The GENETIC SCIENCE LADY agreed. I love it when people who possess such a foreign and important knowing agree with me. Makes me feel smart and surly. All of this matters because it comes down to whether or not a double mastectomy is medically necessary. Which leads back to the "Its only temporary..." thing.

This is what happens when time passes, when progress is made. The thing hanging out at the end of this long haul, the surgery bit of this delightful journey, is getting close. It is tangible. People with important titles are clearing blocks of time on hospital schedules. It is real, whether I like it or not. It is real and I have to be there. All I have been wanting is for this miserable chemo-trip to end. Soon it will and what looms at the end of it is not a lot of fun. To paraphrase good old Hunter S., that great white light at the end of a bad trip is sometimes worse. Sometimes that great awfulness is just prep for some serious awfulness. Sometimes the white light has claws.

The CAPTAIN is concerned with the cancer. I am overjoyed that that is what he is concerned with. Wouldn't have it any other way. He informed me that reconstruction will not be discussed for a good long while after surgery, not til my margins were clear and all that. Radiation will follow and I will get all juiced up with Herceptin two weeks after surgery. My hair will kind of come back but it will be thinner. He will radiate the lymph nodes above my collarbone as well as the breast tissue. This sent me into tears.

MOTHERFUCK enough! Enough already! Radiated skin doesn't like to heal. I have seen this with my mother. You burn out the cancer but what's left is confused and really doesn't want to play anymore. That would be cool except its the skin where my new boobs are supposed to go. "This will make the reconstruction more difficult." said the CAPTAIN. Awesome. "But this is only temporary." I'm sorry, darling, but walking around the world without a tit for a year seems awfully fucking permanent. That's when I told him "You're going to take them both." I am off-kilter enough. I certainly don't need any more help.

This entire cancer fiasco is not "only temporary". No. No sir. There is no part of it that is or ever will be. The CAPTAIN's job is to cure me. Cure is a word full of trade-offs. If you are willing to do this than I can cure you. If you are willing to give this up than I can cure you. If you are willing to be afraid, lose your hair, not have kids, walk the earth scarred, hurt like none other, miss yr old life, be burned to a crisp, be shot full of poison, fight every waking moment, have water taste like battery acid, get fat, puke yr guts out, cry, cry more, throw things, send yr husband to sixes and sevens,act like yr fine, make yr friends sad, be stripped of vain comforts like hair and eyebrows, be hungry and never full, get ugly, swallow immeasurable loss, make yr dog worry then, maybe then, I can cure you. Maybe then you get to live.

Well that seems like nothing really when, if you don't, you don't get to be on the planet to bitch about being fat anymore, right? CAPTAIN, I will do whatever it is you need me to do for however long you need me to do it, just don't let me slip off this world. I've got shit to do. It is, however, not temporary. Long after (and it will be long after) the day to day fight is gone, the chemo and the scars and the weird burning smells, I won't ever forget it. It is an ugly thing to know. And, at the moment, its a wretched place to have to hang out. Fuck the edge! I want back into the sweet soft complacent middle. But this is the way it is now.

It is amazing how the universe asks you for incredible energy when all you want to do is take a nap. Wars have rarely ever been won napping, however. Hush now and wake up!

Thursday, November 13, 2008

The New World

There are words in the world. I understand this. I cannot find the right ones.

I have been staring at this screen for an hour ( actually, I've been staring at it for a week), trying to figure out what to say about the last weekend, the last week, and I cannot find the words. Rendering my smart-ass speechless says volumes.

First of all, as of November 4th, I don't have to learn Portuguese. I can almost be sick in my own country now and that is a huge relief. The part that worried me most, (other than Sarah Palin, a hundred year war, the possibility of a further privatization of health care, and the ridiculous $5000 health care credit idea) was the pet quarantine. How does that work? Can you go visit? Can you bring roast beef? Doesn't matter now.

I have a friend who still cries when she sees pictures of Election Day. I understand. I am reminded by the young and the beautiful crowding outside the White House telling a certain man to "Get the fuck out!" that not everyone lived through the Reagan Years. These last decades those of us who were "trickled down" on have watched our country morph into something ugly, gaudy, and sick. Self-serving and self-indulgent. That "shining city on a hill" had become some awful tan-and-taupe gated community. The rest of us weren't welcome anymore.

On November 4th we beat the gate down.

The following weekend was Apocalypse Meow.

If November 4th did not bring hope enough, the weekend that followed sealed the deal. I am a doe-eyed cynic, a worst-case scenario sweetheart, an Eeyore who sings. For all of my want for things to be better, I am tempered by the fact that things rarely cooperate the way one may want them to. But as of the late, late evening of November 9th, several shots of bourbon ahead of myself, I realized that I'm a changed person. Cynic be damned. I've been broken. Built again. My gate was beat down too.

Thank you is not not full of enough to begin to express the depth and breadth of this. Thank you is what you say after someone has given you a blender.

Community and family. I keep going back to community and family. Howard said it best on Friday night, "This is community. This is family". You all built me a barn and as soon as I possibly can I will return the favor. I'll build you a bajillion barns and sing in all of them. And make chicken.

When the idea of a benefit came up my first response was "No!" which was greeted with a resounding "Too fucking bad, get over it, we're doing it anyway, buck up!" But I was reminded by a man who has known me a good many years that all the good in the world that you do doesn't mean shit unless you let other people return the favor. Otherwise its just selfishness. I had to remind myself quite a few times that The Rev. was right. If good can come of this bullshit cancer thing than let good come of it. Let good come of it!! There is no better way of telling it to go to hell!

I will find the right words soon. Right now I can offer up the awkward-not-making-much-sense ones. The ones that don't seem to express what I mean. I'd take bullets; give all I had left.

Thank you.
Thank you....

We're living in a different world now.

Monday, October 27, 2008

Standing at the Mailbox

I don't recall a more perfect fall, slipping slowly by degrees to winter. Usually, or has been the case over the last years , it's 98 degrees on Wednesday and by Friday there's snow on the ground. Summer ends and winter starts. Maybe its all the rain we had that sets the trees on fire. I know, I know.. waxing poetic about the switch of seasons is cheesy. I have cancer, ha! I shall muse as I damn well please.
I haven't really thought about cancer lately. It comes in flashes now, which means one of two things; I've learned to reckon with it or I have a wicked case of denial. I can't help but think about it when the damned bills come. I now know why the insurance industry is so expensive. Everything they do involves an envelope and paper. The overhead for mailings alone must reach into the bajillions of dollars. And its not even the bills, it's the lead-up to the bills. I have received a piece of paper that tells me "Hang on we're just looking to see if you need to pay us" every day (cept Sundays of course) for four months. Everyday. Now, lets do the math. I've been rolling in and out of Dr.'s offices pretty steadily since July 22nd. If we assume a mailing once a day (and that's a low assumption) at .35 each for 84 days I'm running the company about $30 in paper so far. This is only the beginning. I'm going to cost them, baseline, one hundred dollars a year in paper THAT DOESN'T SAY ANYTHING! I am excluding from my equations and calculations the paper that actually does say something, like "You owe us $16,457.09". (I love the .09 part). And I can't be the only one getting these letters of nothingness. Even if there were, say, 8 of us (and I believe more cancer-folks than that are under insured by my insurance company), that would be $800 a year in paper that says nothing. That's like half a bag of Herceptin, 2 scripts for Oxycodone, an eighth of an MRI. I'm just saying...you know, man on the moon craziness here, but maybe insurance giants could learn how to cut a few corners. Those of us on the receiving end most certainly do. These are hard times.

Its a funny thing when items show up in your mailbox asking you for three quarters of the money you've made over the last year. It pulls into question yr chosen career path. A typical day at the mailbox often includes a quick review of the moments in my life where I could have made the decision to be a millionaire. "Hmmmm, if I had taken Advanced Economics or Computer Programming in college instead of Girlhood in America or Advanced Creative Writing would I be looking down the barrel of the same gun?" Considering the state of the economy the answer is likely yes. But this whole episode, this whole cancer bit, has got me thinking about art and artists and songs and poems and their real validity versus their perceived validity as a major component in culture.
On several "music" message boards in the area there seems to be a standing belief that pursuing music or songwriting as a viable career is misguided to say the least. There is a feeling that those of us who have tried and achieved varying degrees of success in music are living out some adolescent fantasy and why don't we just go get "real jobs"? Real jobs? The implication here is if I had a "real job" than I wouldn't have to worry about health coverage, financial stability, the future. Some of the nastier inferences seem to suggest that if I'd just shaped up maybe I wouldn't even have cancer. Wowsers!
A group of people are stepping up to help me, the folks from Apocalypse Meow. I have played benefits for musicians, too, as a way of offering support when they've been faced with the financial harpship of a medical emergency. We are a benefit having people. I have always believed musicians as important as HVAC folk or programmers or schoolteachers. I beleived that before I got cancer. I believed that before I ever got on a stage or strung a guitar. Songs make up memory. What played at yr wedding? What played at yr first kiss? What played when you lost yr first love? Songs did. The people who made them are important. As far as I'm concerned, writing the soundtrack of the world is a pretty "real" job.

"But yr not making money off it!" "But yr not doing a stadium tour!" "Yr not really a musician because you don't have a video on MTV! " "Are you on the radio??" Ahhhhhh!!
Perhaps it is because I am the daughter of a working actress that all that malarkey drives me to drink. My mother was an actress who never starred in a major motion picture. She never dated Colin Farrell or made the cover on InTouch magazine. She quietly worked hard and made enough money to keep a (Manhattan, and not Kansas) roof over our heads and send me to the best school she could afford. As an actress. Her union is taking care of her now. Working musicians are worth the same respect, deserving of the same securities as any other performing folk. And I'm not just talking about the chamber music people or the orchestra lovelies. The people making music night after night in bars across the country, across this city, are worthy of respect and security. If they are out there, night after night, year after year, with little return on their investment of time, they did not choose it, it chose them. There is nothing romantic or glamorous about sleeping in the van, living with your band mates, eating beans and rice, or working 3 part-time jobs to support yr full-time job. Their work is worth preserving and they are worth protecting. If no one else will do it, damn it, I will.

I was reminded last week that music is a game of attrition by someone who knows a thing or two about all that. A career is not hits or videos or money. All those things are nice. (Especially when standing at the mailbox with a $16,000 bill in yr hand). Staying in the game long enough to make great records and sell a few, put on good shows, sell a couple songs, and not give up. That's a job. Not a fucking J-O-B, but a life's work. That's worth pursuing, sacrificing, and believing in.

It's worth kicking cancer in the motherscratching teeth so I can get back to figuring it out.

Wednesday, October 15, 2008

Go S-P-O-R-T-S!

In a fourth floor office on July 22 a game plan was formulated with the distinguished CAPTAIN and myself along with my offensive line. A methodology was set forth. There were charts, visual aids, Sharpies. A plan of attack was conceived, a playbook issued. We got uniforms. I showed up for the first quarter and there were cheerleaders....a lot of bad ass cheerleaders! I am not quite sure why I'm using a sports analogy except to declare that we've reached HALFTIME folks! Snacks!!

As my mode of treatment was explained to me I was to have eight rounds of delightful and invigorating chemotherapy followed by surgery (Superbowl) and then radiation (post-season nonsense). I got through the fourth round on Thursday. Its time for the halftime show. Why aren't Bob Seger and Beyonce doing a confusing duet in my living room?

July seems like a hundred years ago. I halfway expected to be some sad shell of myself at this point, having to be carried in and out of cars wrapped in an old checkered blanket, sipping Ensure out of a straw, having adopted some post-Dickensian mode of speech ("Thanks Gov'nr. R'membr you 'n 'Eaven, they will.."). No. All has changed and every thing's the same....

I have a super militant haircut, but I was super-militant anyway.

I still scream at the television, loudly! Just because I have cancer does not change the fact that I am a super political fringy "elitist" lefty, who, if left to my own devices would not only nationalize health care but also put kittens in every airport. Cancer did not bring on some toned-down, even-handed, deeply contemplative version of myself. Not so much. Loud and confrontational is sort of in my blood. Cancer did not make Sarah Palin anything less than insulting.

Cancer did not make me a grudge less individual. I wish it had. Maybe it will. I'm still one of these black or white sorts of folks. If someone wrongs my family my friends or my band, forget it. Its not intentional. I come from hot-under-the-collar people. I have a memory long as an elephants. Cancer won't fix that, time will.

I have read a lot about this disease and a lot from people dealing with this disease. Having reached halftime I feel I can report on my findings. Cancer-talk still deals in a language of quiet desperation, of resignation, of "the end". Even the stuff that's supposed to be inspirational is rather, shall we say, down at the mouth. The word is so imbued with fear and loss and awfulness, a certain end-of-the-worldness. I am not making light of its severity. Please don't misunderstand. But language has power. Words have power. They represent things, concepts, identities. Spoon. Rascal. Kitten. Cancer. No one is deathly afraid of spoon. Spoons don't kill you. Well, cancer doesn't have to either!! That seems ridiculously simple and naive and immature but I say the word everyday now. I say the word and the whole shebang it entails pops up and floats about, shedding its nastiness in drifts like dog hair all over the room. I'm over it. Good lord I'm over it!!

Cancer is not my guru, my teacher, my defining moment. I am no better or worse for it, stronger or weaker or smarter or more psycologically scarred in its wake. It does not allow me to wear sweatpants to the grocery store or to become an anti-smoking Nazi. It does not excuse bad behavior, nor does it automatically turn me into some Mother Theresa sort who gives up all her worldly goods to sit in silence on a mountaintop. It just needs to have its ass kicked to the curb so I might endeavor to worry about something more important and, may I venture to say, more interesting!

It has, however, put a fire under me, an urgency, a this-won't-wait-anymore-Abigail sort of thing. I am sort of a high strung person, depending on who you talk to, so what may be the end for cancer may very well be the beginning of hypertension but that is another blog entirely. The world, no matter what you believe about later, is, at the moment, finite. It is this moment-full of love or chemo or cocaine or stress or buttercups or breakups or any number of finite, accountable, real life things. We are not existing in some existentialist Oliver Stone version of our own lives. No one's gonna make a fucking movie, sweetheart.

So that concludes this halftime show...the second half starts now.

Monday, October 6, 2008

Tiny Amish Ponies Cure Cancer

I had forgotten how good it felt to sleep on the ground. I had forgotten how uncomplicated time is when the only thing governing it is the sun. It rises, you rise. It sets, you fall to sleep without strange lights or meddling ringtones to tell you otherwise. A fire is infinitely more interesting to watch than Hardball.

We went camping this weekend in northern Missouri in an area called the Green Hills, a collection of glacial deposits that are uncharacteristically hilly and beautiful for that part of the state. We were also in close proximity to Jamesport, an Amish community established in the 50's if I remember correctly. It had been a small forever since I had left the J-O-B and the city behind for an excursion beyond the state line that didn't require an amplifier. The winter is bound to get complicated and this trip was to be a little vacation before the cold and the medical B.S. hemmed me in to town for a good long while. It could not have been more perfect. I was half prepared to come back to KC having someone in my party gored by the last living Grizzly in Missouri (I've been so lucky lately), but we all returned unscathed.
The most dangerous thing that happened the whole weekend was the continual menagerie of cute and small animals that kept turning up; several kittens, a puppy, a small collection of doe-eyed calves, a precocious Jack Russell, a pack of stray hound dogs, and to top it all off, a pair of miniature Amish ponies pulling a cart. Really, miniature ponies? Does the universe just revel in fucking with me? The fact that I am not harboring the puppy, the kittens, the pack of hounds, the Jack Russell, the miniature ponies and their tiny little cart are testament to my rock-like inner strength. Or it could very well have been my husband, unmoved by my pleas, shaking his head and laying down an unsympathetic "NO". He apparently does not believe that tiny Amish ponies cure cancer.
I lived in a tent for awhile, what seems a hundred years ago, while I was getting ready to go Buddha school in Colorado. It was an incredible and uncomplicated time. There were no high-flung-back-to-nature-Gary-Snyder-on-a-mountaintop reasons for it. I just didn't have any money so I lived in the woods. My telephone was a quarter operated affair at a four way stop in Nederland, a four mile walk. Forget the Internet, TV, a coffee maker. We cooked outside on greasy stones and hung our wood smoked clothes and snacks in trees to keep the real live bears away. There were no walls.
I look back now and remember it being perfect but it was also full of difficulties, and if memory serves me a food poisoning episode without a bathroom finally moved me from the woods into a cabin I could afford. But worries were basic then; will it rain, will it snow, will there be enough wood to keep us warm? I did a lot of walking in the woods alone and the silence of that was an incredible listening tool. Away from the noise and chatter and general electrical hum of the life we know as normal is another life, another way of knowing and thinking that is sharpened only when the layers of all of this "civilized living" are shrugged away. Now that sounds ridiculous coming from a bourbon-swilling expletive-spewing CNN devotee such as myself. Hippie bullshit, right? But we've all lived strange lives to get to where we are now.
So the dog and I left our napping cohorts this weekend for a walk alone in the woods. After about ten minutes of manic snuffling she settled into walking on ahead of me at a measured pace. The woods were not as dense as up in Colorado. They've been cleared, tilled, and reclaimed several times since the Oto Indians were run out west, but the Missouri parks folks are trying to restore them to their native state. Billie and I half ran down a rocky hillside and across a dry creekbed where we poked around in the dirt, turning over rocks to see what was underneath. We moved on to a clearing and out of the right side of my peripheral vision came a white tailed deer bounding across the trail and on up the hillside. The dog and I both stopped and watched it disappear. It was like some sort of Disney movie and I half expected the birds to start talking and dwarfs to start marching out of the shadows. Billie didn't run. She just sort of looked back at me and then back to the hill where the really big and bouncy dog went. We kept walking.
We build walls and put things inside them, build fences around them, and call them our own. We surround ourselves with distractions, levels of technology that can keep us from interacting with people for days at a time, and then we wonder why we're lonely. I don't know why camping this weekend (at a relatively well-appointed campsite mind you) got me thinking about all this stuff. Things just seem more precious now. Laughing with four of my favorite people around a fire seemed surreal, stolen from time. The dog almost getting hit by a deer on a trail in the woods goes completely against my seemingly normal ways of thinking. Not being on a 24-hour-news-cycle schedule punctuated by electric light and important incoming messages for just 48 hours righted me a little bit, snapped the bigger picture into focus and steeled me for the bullshit fixing to rain down soon. I wasn't sick this weekend. I was just some anonymous piece of a bigger thing spinning from sunset to sunset, unencumbered by appointments and second opinions, diagnoses or projected outcomes of treatment. No one stuck me with a needle or measured a damned thing and there were no mirrors to remind me that I don't look the way I feel. There were no walls to hide in.

Friday, September 26, 2008

Fox-Colored Paint Chips

How are you? We ask people this every day. How ya doin'? How are the kids? Howzit? How are you.....Lately people ask me this question and I'll say things like, you know, "Fine," or "Hanging in there," or something like that depending on the extent of our relationship and how closely they are associated with THE NEWS and whatnot. Then they'll be all "No, really, how are you?" and they'll look at me very seriously as if perhaps I didn't understand the gravity of the situation and I will reply "Oh, good, fine, you know, getting by, livin' the dream..." and then with all the earnestness in their hearts they'll say something like "Are you doing alright?" What am I supposed to say? "I'm not dead yet," or "Better step back actually, the chemo is leaking through my shoes," Heavens sake! I'm convinced sometimes people love a car wreck. I'm never quite sure how to handle these situations. No one really wants the details three drinks in on a Saturday night but I will offer them up. I have no qualms. There are gory details. I could go on for days....
I go back and forth. In the same way I want people to know about how fucked up this particular version of breast cancer is and am willing to tell anyone who will listen about it there are also some days I want to worry about something less ridiculously weighty and scary. I want to worry about normal shit again like what color are we going to paint the bathroom darling? Or did we remember to pay the water bill? The importance of haircuts and outfits, though not really ever my thing to begin with, have been completely upstaged by really annoying bullshit like metastatic skin involvement and cytoxin therapy.
I've been away from the computer for awhile. I do this sometimes. I don't have a job that requires me to use it so I kind of forget about it on purpose and pretend like its 1993 again. The chemo kind of knocked me out this week and I'm pissed about it. I feel like I'm letting folks down when it knocks me on my ass. I want to fight this thing. All I want to do is get in a ring and fight this thing. I want to beat it bloody, rip its cheeks off with my teeth, tear at its eyes, break it in two. I want there to be some measure of success. I want there to be some sort of winning not just ragged victory by virtue of getting through. That just seems so pussy to me. "We'll shoot all this poison in you and see how long you can still get out of bed and function like a normal person" does not seem like a proactive plan to me!! I can't do anything. Things are done to me, through me, in my veins, over my heart, under my skin, silently, strangely. I'm used to fighting- whoever, whatever,whenever, let's go! When these strange things knock me down I get mad and just start throwing punches at the shadows on the wall. I want it to be over.
I saw my fox again. The night before I was diagnosed I saw a fox trotting down Ward Parkway, on the sidewalk mind you, at 4am. That's just weird. I've seen her three times since. She's always got something in her mouth. Apparently she's a fan of snacks. I didn't grow up with foxes. Squirrels were a big deal when I was growing up (citygrrl). Foxes are new for me. I've done a little nosing around in regards to what they're supposed to mean. Some folks say they're the spiritual manifestation of dead relatives. I'm not sure about that. My people weren't very fox-like. They were sort of big and German. Some folks say they're tricksters and are meant to bring joy. They represent cunning, longevity, family. All good things. I just think she's awesome. There is a fox living where she shouldn't, getting by, hanging out. Maybe she's been there all along. It's strange what I see now.

Wednesday, September 17, 2008

Cancergrrl Goes to the Grocery Store

An hour and a half if I'm lucky. That's how long it takes cancergrrl at the grocery store. More if I have time and I don't feel the uneasy glares of the stock boys as i traverse the frozen foods section for the umpteenth time reading bags of frozen peas. I frequent a little hoity-toity market in the Brookside area where well-intended (but perhaps overexerted?) "liberal elitism" rears its holistically coiffed head everywhere, including the cereal aisle. Perhaps it is because of my fragile state at the moment but I found my self yelling at the heavens "WHY! WHY do we need 487 kinds of gluten-free organic folate-and-calcium-enhanced 100% fiber all-natural animal friendly panda-snuggling free-trading PVC free breakfast cereals!!" I was pummeled by healthy choices and pummeling is no good for a woman in my condition. Please don't misunderstand. I love pandas and everything, likely more than the next guy, but the level of nutritional options is mind numbing when there are so many studies involving the link between nutrition and cancer. (This is why republicans hate my team; the mother scratching litany of do-gooder breakfast cereals, tofurkey just as a concept.... and the free-range cinnamon rolls.)

The grocery store has become a library, a medicine chest, a mine field. The farmers market is so much easier. Not so many labels. When you have a messed up wicked ugly disease you tend to do a ridiculous amount of reading about it. First you read all the horrible statistics then you get into the rah-rah stuff so you'll stop fucking weeping and take out the trash. Then you eat six pints of ice cream because you have cancer (why did you eat six pints of ice cream?). After that you try to earnestly figure out why you have the wicked ass ugly nasty disease. And then after several weeks of alternating between fashioning a wonder woman outfit made entirely of pink ribbons and flat out refusing to put on anything but pajamas, you settle into where I am now: how do I synthesize all this information regarding science, nutrition, wellness and the stuff I put in my mouth and get on with my damned life.

I love bacon and diet coke! Lets make that clear. And bourbon, and mayonnaise, and cheese. I love crappy tacos at three am and breakfast sandwiches when I'm hungover and late for work. Let's not forget how MUCH I LOVE CIGARETTES and fried chicken. I have been forced, as an occupational hazard, to create entire meals from the enticing selections at Kum-n-Go's, Snappy Stores, Truck-o-mats, and any other of the Stop-n-Robs that line our American highway system. I have eaten bologna and canned tuna as protein staples (and shared them with my cat) due to poverty. I am not a vegetarian. I am not a proponent of vegan-ism, macrobiotic-ism, raw food-ism. But I tell you what...the more I read about the shit we have been fed as a nation, from the dollar menu to the DDT, the less crazy the macrobiotic free range vegans of the world seem to be.

Yes, fucking cigarettes are bad for me. I get it. But the cumulative effects of all the marginally safe additives in the human body have not yet been studied and they can't be good. It's just amazing to me that more research has not been done into how our environment and our genetics play significant roles in contributing to getting the disease as well as not getting it. What did my grandmother say, something about an ounce of prevention.....but broccoli isn't sexy! It already exists. A pharmaceutical company can't create it and profit from it. Elegant science does nothing for actual people. Find me a cure darlings! Find me a cure. And in the interim, figure out what my husband, best friends, and boss have to do to not get it...and don't just tell me to give up cigarettes and bacon. I will raise you money darlings. I will walk your walks and someday run your runs. Getting my fat ass off the couch isn't about being thin anymore, its about being alive. But let us not set our sights on the fame and the glory, the magic bullets and the wonder drugs. Those would be nice. I got no time for nice. What do we have to work with now?

Back to the grocery store......This wickedness can't all be genetic. What we put in and on our bodies has to be a factor. So I will spend 20 minutes reading bread labels because you know what there's no fucking reason for high fructose corn syrup to be in bread (and every other thing). Stabilization my ass! Buy local and help the wretched economy. There's no reason for anyone to eat a pineapple in December. Pick up a parsnip and figure it out. I'm just trying to figure it out. Some things take time. But the less far food has to travel the less weirdness goes into preserving it so less of that bullshit ends up in me. The shorter the ingredient list the less crap goes in my body. Its an expensive shift for a girl who is going to owe the GDP of New Zealand in medical bills. Tell me this, why is the nasty ass wonder bread from Jersey cheaper than the stuff made two blocks from my house? Why are Twinkies three boxes for a dollar and you have to sell blood to afford antibiotic-free beef? If I only had two bucks I'd say fuck it, let's get a taco. All of this makes me want to throw things!

Rotten, organic things.

Saturday, September 6, 2008

Gratitude & Thespians

The air has changed. It happens in the Midwest. A certain day when the air gets colder, cleaner, only for a few hours, signalling fall. The dog stood outside with her nose in the air for half the afternoon trying to figure out what corner of her world summer had escaped to, snuffling about at the holes in the fence as if it might have followed a rabbit into the neighbor's yard. It will undoubtedly get hot again. The Midwest does that too. Wretched hot in October. And then it will give way to autumn and then winter. I have never waited for winter. I'm waiting for winter now.

Wednesday night (the fabulous Wing Nite of previous mention) my folks came in to the bar. And by my folks I mean my theater kids, a group of grad students who haunt a particular joint where I happen to work. These, just for the record, are not my insane wing nite dinner clientele. They are insane, but in a totally different way. I have waited on them every Wednesday for the better part of two years now. They are my brave ones, my thespian cavalry, my darlings who believe wholeheartedly in the art they have sacrificed for. You don't get to grad school in theater for any other reason besides love; love of lighting or stage managing or sound wrangling or play writing or set designing or (heaven help them) acting. (The plays the thing, right? Someone might have said that once...). My mother was an actress. It is a difficult life full of struggle. And perhaps that is why I've always felt a certain kinship with my late night theatrical wing eaters. My people chose music. They chose theater. In an older world, the work we do would matter just as much as the work the accountants do, or the IT people, or the money movers, or the big contractors. But this is not Greece, or a Paris of a certain age, nor Rome before the fall (even though sometimes it feels that way). In this country, right now, art in all its incarnations is marginalized so thoroughly that the work we do has become nothing more than frosting on rather dysfunctional cultural cake. I have never considered music frosting. Its sort of important. As is theater, poetry, art, and language. I could go on about this for days (my soapbox doesn't go to chemo with me)......but back to Wednesday...
So every Wednesday my theater kids come in and get shit hammered. They eat their wings and drink their vodka-tonic-double-tall-whiskey-press-captain's punch-extra-pineapple-miller-pitcher-drrty-shirley-appletini-jeagerbomb-slut-shot-rum-and-cokes-after-11pm-please-Miss-Abigails. I, too, have a bar I walk into where I don't even have to speak and there is a Beam and diet waiting for me. I understand the importance of the joint you go to when the world ends, when the world begins, when you nailed it, when you failed. These places are important. I do what I can for them. I like them. And they are kind. But what they did for me last Wednesday was amazing.
Certain angels among them (Beth & Phil) rallied the troops, shared the news of my awesome $100,000 haircut, organized a cocktail assault, and basically fed the evil insurance monster for a good, long while. Thank you! I'm sure there are far better combinations of words but I have thought for days about this and cannot think of them. I am a proud and stubborn girl. So stubborn that even some of my hair is refusing to fall out. I have, for many years, been the cavalry director, the cat wrangler, the sword wielder. It is strange watching the advance from the other side. From this vantage point, please know, I am learning something I may have never really known before. Gratitude is not something you have for something or someone, but something you are shown you have and often painfully. You all left on Wednesday night, and when I was good and safe and alone I walked out into the rain and cried. And they were good tears. Full circle tears. Thank you, my darlings, thank you, thank you, thank you more than you will know!!
There are other people too, whispering away in secret meetings they don't think I know about. My Apocalypse Meow contingent. So much whirls in my head. I think, "This is community. This is taking care of your own. If no one else will do it, it is our responsibility." I remember sitting in the room with the nurse having the initial biopsy for this beast done, unsure, unknowing, scared shitless of the huge black shadow on the xray machine, and she asked me "Why didn't you come in sooner?" and I said to her, "Debt kills people too." I don't want the super-bestest-cutting-edge-elephant-placenta-magic health care, I just want some health care. I want someone who loves medicine like I love music to lay hands on me and tell me "This is how we're going to beat this fucker" and I want to be able to pay for it and get on with my life. I don't want it for free, I want it for possible. I am worth saving even though I don't make $100,000 a year, and it took me awhile to come to that conclusion. The painters and the dancers and the actors and the writers are just as worthy of being well and safe as the lawyers and the doctors and the used car dealers. "What matters most," Bukowski said, "Is how well you walk through fire." Fire ain't no thing for some of us. We've learned how to live on a quarter. But its a hell of a lot easier to fight through with an army. So gratitude....gratitude deep enough to change the way the world looks now. Eight letters are not enough, but thank you.
XOX

Sunday, August 31, 2008

The Spanish Chemo Rats

2 centimeters is a negligible amount. It is not a large thing. In fact, if it were anything other than a piece of cancer that is no longer there it would be entirely overlooked. Except, it is a piece of cancer that is no longer there and the biggest thing I've ever known. The good DOCTOR, who I will now be referring to as CAPTAIN, said the tumor was 2 centimeters smaller...(maybe more but he is a conservative fellow and I appreciate the effort to not overstate). I had a small freak out in the exam room. I made a triumphant yalp. He raised his eyebrows at me and smiled. I am convinced he won't let me die because I may be the weirdest patient he has ever had. I brought him a record too. I stated that the record was a not so subtle reminder that when the time comes to go mining for lymph nodes in my arm that the arm still needs to do the work it used to. I'm not 50. I still have a couple good decades of songs left in me and not playing the guitar is not an option. He said he was not a big fan of rock n roll. I told him to hush and listen to it anyway. He smiled again. Small distances mean everything now.

Chemo is a weird thing. You are infused, like tea, with poison. It wasn't so bad this time except I knew what was coming and that is another game unto itself. But I have decided that the strange gnawing feeling in my left boob shall be accredited to a small legion of winged Spanish chemo rats. It just feels like little scruffy rats with bandoleers, razor teeth, and long moustaches are nibbling away at this nasty business, successfully at that! I'm not sure why this visual comes to mind, its special spiritual significance, what any of it means...but I love my Spanish chemo rats! They are badasses! They are oldish and tattered and have been to this movie before, risen up through the floorboards of the Alamo, built rafts across the Rio Grande, shot bigger meaner things than cancer dead on and lived to tell the tale. These rats know things! They also like to nap which is cool because I couldn't take their crazy nibbling all the time. It is said in many of these books folks write about cancer that is is useful for the PATIENT to visualize something fighting their cancer. Not sure if my rat army is what they meant but I'm also learning that a lot of these folks who write these books are very serious indeed! I, alas, am not so serious. But even the batshit among us need an army once in awhile....moustaches or not.

Runnish has been going well. Think I'm going to take the dog for a little spin and try desperately hard to mentally reroute Gustav from barrelling into NOLA. I'm just going to say this....Republicans shouldn't pray for rain. They have so thoroughly sullied the communication lines with the divine that there should be a moratorium called on all further exchanges. At least for the time being. Let a liberal pray, dude! Shit may go better.

There should also be a moratorium called on all ironic moustaches. Indefinitely.

Sunday, August 24, 2008

Runnish and Zevon

We had a show last night and it was delightful. The funny thing about quitting smoking is I've seemed to gain back an octave. There are no octave loss warnings on the packages. Birth defects...not really applicable. Cancer, well, thought I was invincible, etc., etc., but if the packages said "Warning, WILL assuredly sound like Marianne Faithfull by the time yr 35" that might have made me quit earlier. I love how music critics call that, what is it, "cigarette stained". That's a load of crap. Ladygirl can't hit it like she used to, is what they mean! I read an article once that Emmylou Harris started smoking a little here and there to grit up her voice. I think you have to be Emmylou Harris for this to work effectively. Chipping at cigarettes rarely works.
Things are finally getting back to normal which means chemo again next week. Yeah! I can hardly wait for things to taste like battery acid again! Love it! But in an attempt to combat all the tiredness that comes along with this nonsense the dog and I have embarked on an exercise program I have decided to call "runnish". When the dog and I used to sort of run together in my old neighborhood (the gnarled heart of midtown) I found it difficult as sometimes friends would pull up next to us and ask us what we were doing. I would wheeze out a "runn...nning" and they would say "From what?" as this is my relationship with physical activity. They would slow down at the cross walks and ask if I needed help, or a ride. Then I would remind them of my policy to never wear sweatpants out of the house and how breaking that rule obviously meant I was trying to better myself through rigorous activity. And then they would ask me what time I would be at the bar later. Needless to say.....since moving out of "the Shire" I enjoy relative anonymity and can run about in sweatpants with the dog and not be questioned as to my intent. So me and my sidekick McWizzlers have begun "runnish", a self-devised program of walking rather quickly and then occasionally, when the mood strikes us, sprinting from mid-block to stop sign every once in awhile.

I have a friend who I admire to the point of sort of standing in awe of her and not quite knowing what to say. I am like this with most people who possess great amounts of discipline because I have none. She is a runner, and by runner I don't mean, yeah she gets out of bed and takes the setter for a spin around the park before she goes to work runner. I mean the lady logs miles. Many miles. $947 worth of airline miles miles. She is serious about it and I respect that to no end. She has the discipline to do a rather uncomfortable thing and her reasoning is not obvious which makes it more intriguing. She's not the sort to do it for vanity. Health perhaps, but she is all around one of the healthiest people I know. If it is for joy, as I suspect it may be, then I totally understand. I came to music late in the game and had to go through all those awkward 15-year-old-boy steps as an adult. Every step was terrifying, uncomfortable, sometimes painful (failure is never fun) but the joy I got out of it was worth every single wretched bit of it. Its not old hat now by any means. The moment that happens I'll need to stop. I am still flummoxed by it. I still fall in love with it daily. But I do have my sea legs under it. I have a handle on it. I think its time for me to do something I am entirely afraid of. Think I'm going to start figuring out running. I will begin with runnish, however, for a good long while. Unlike my lovely friend I possess little if any discipline. Obviously. I have cancer which means I overindulged in more than a few somethings along the line! (Tee-hee). And hell, you know it might be good for me.

It is a strange thing when you realize you are not invincible anymore. When you have lived hard and rough and fast and loose and come to the point where you're obviously too old to overdose and young enough to actually want to see how it all plays out. How yr friends kids will turn out; what the next record might sound like. As the strange wizard Zevon said "I'm too old to die young and too young to die now". There is a certain breed of folk, I perhaps included, who never thought they'd get to thirty. So now we're here. Shit! There is no trading up or trading in. This hoopty-ass body of mine is what I've got to work with. Parts are expensive (as I'm finding out). Time accumulates. And I am not saying I'm old, just full of time. You'd think I'd be smarter by now...but as my beloved says while watching reality television "Man is a stupid animal and slow to learn." Amen! So I'm going to learn to run because I'm here and I can.
XOX
miss a.

Sunday, August 17, 2008

Does All This Worrying Make My Ass Look Big?

So I've been thinking lately. I think a lot now. I've been wondering how do you say thank you to people who have sacrificed their own hair in solidarity. I don't know how. Thank you all so much. I cannot make enough chicken in gratitude. There are not enough chickens to fry (or tofu, accordingly). I've been thinking a lot about hair, as my funny "little rabbit" haircut will soon give way to no hair at all. And I've been thinking about Royal Oak Michigan....

If my memory serves me it was the summer of 1994 but I could be wrong. There was a boy. His name was Andy and he came from a row of workingman's houses in Royal Oak. He was beautiful. Long hair dark-eyed beautiful. He worked days in a garage but fancied himself an artist. I was in love with him for a little while, I think, but what do you ever know before you're 25. The important part of all this is he was in love with me and I was so confused by that. This beautiful creature thought I was a beautiful creature and I was so worried! I was dumb-16-year-old-girl-worried about everything- my hair, my weight, my clothes, what I said, what I didn't say. Andy didn't care, he just thought I was beautiful. I wasted that joy in my insane self consciousness.

They say stress may cause cancer so technically worrying about my damned hair has ultimately led to its loss. All those things I've worried about are real now. In another week or so I'll be bald. The poison has made my skin do crazy things. I may gain weight because of hormones or lose it because I can't keep food down. My body is slowly showing signs of dis-ease. And I think back to that girl; the girl I saw, and the girl that beautiful boy saw one summer and realize I have a lot of time to make up for. Fuck a bunch of worrying anymore!

We are the masks we wear, what we perceive as ourselves. Every self assumption is a piece of armor and we build it up to get by as unassailed as possible. We don't like getting hurt. Big boobs. Big hair. These are symbols of "beauty", fall-back defenses almost. We can hide behind them. I have for years. What happens when they go away? I have no idea. But hair is just hair. And boobs, well....they really are just boobs.
I woke up with cancer one morning but I also woke up with this weird, fully aware opportunity at reinvention. Disease imposed reinvention but reinvention nonetheless. That's a mother to wrap yr head around. I can be anything now except what I was before. That's frighteningly reassuring!

Wednesday, August 13, 2008

Wing Nite

As some of you may know I sling hash to pay the bills. I work at a bar and grill with a contingent of the baddest bitches I've ever met. I love my job...except for.....wing night.
Oh lamentable wing night! Oh wing night of foulness and filth! Oh put a hex on thee wing night! When I arrive in hell, I will be forced to consume cheap chicken wings (and likely wear a visor, but that is another story).
So the chicken wings are 35 cents each. You must order at least six (no sir you cannot have one wing). People actually insist on separate tickets! 20, 30 people will come in for wings....separately. Neighbors, co-workers, friends, married people with their separate tickets are you kidding me? Did you never like him enough to spend $2.10 on his punk ass? Can he pay you back tomorrow? It's as if the wing sauce temporarily inhibits seemingly normal people's abilities to do basic math. I could go on about this particular day of the week and likely will sometime later but if ever a heroic thing was ever done, at least in my mind, it will be walking in there tonight, my shaved head held high, my server-tron smile plastered across my face, and not smacking a bitch upside the head! Really sir, really you ordered 55 chicken wings and you say there are only 54 here? Really? If that is the worst thing to happen to you today sir, congratulations!
XO
Miss A.

Sunday, August 10, 2008

Word on the Street

So yeah, chemo! Wow. Not fun. The strangest part is the waiting. DOCTOR gave me a dozen scripts and a laundry list of side effects and said "Fare ye well" to which I replied "You're kidding!"
Abusing highly addictive and potent narcotics was a touchstone of my misspent youth. I was really good at it. Its not as much fun when you actually need them, let me tell you. So here is the rundown. Keemoz makes food taste bad, makes my bones hurt, makes the sky heavy. Keemoz makes me incapable of listening to people bitch on their cell phones...I just walk away now. Keemoz makes the pets think I've been poisoned because I smell like heavy metals. Keemoz makes me cry which just makes me mad! But I love this wretched poison too. Its killing this nasty stuff...everything else but also the nasty stuff.
We had a show last night. That was crazy. Next time I think I ought to take the drugs they give me but I figured I wouldn't be able to sing well if I did. I have done a little singing over-served before. Its likely the same thing.
I learned a little about rumors and this town last night. Word on the street gives me a 20% chance of getting through this. Wow! 20%! Have you naysayers such little respect for this old battle axe?? Let me just clear this up right now.....I AM NOT GOING TO DIE YOU FUCKING FOOLS! If you've got money on it I would suggest another horse because this little pony ain't done yet. Lawsy!
And I also learned a little more about this town.....you all look so beautiful with your shaved heads!! It makes me want to put you all in my pocket! You are all amazing.
I cannot put words right today but I figured I'd post something. I will re-read it and find it not making any sense. But nothing really makes sense anymore. XO

Thursday, August 7, 2008

Best Get A Run At It

I went to an appointment with the DOCTOR yesterday and there was a little glimmer in all this. The nastiness hasn't spread. The battery of tests came back negative. That was the first five minutes. The next forty five minutes were spent discussing the side effects of chemotherapy. Yes, chemo is medicine, more specifically, a cocktail of medicine they infuse through mass quantities of blood through a port (that I had installed) near my Vena Cava. Chemo, by its very nature, is poison. Its dispatched to kill the cancer, no holds barred, take no prisoners, spare no life. That's why my hair will fall out by August 21st. That's why I'll spend time I can't get back being shot up with white blood cell booster. My risk for infection is high. My heart could explode (I am told this doesn't happen...much). I have an armload of prescriptions, two of which I can actually pronounce. I was told to go out and get stool softener and anti-diarrheal. Ok dude, which one is it? "We can't be sure," Well, when will I get sick? "We can't be sure," Ok, will these drugs work on me to prevent throwing up all over my pets? "We can't be sure," What about these mouth sores you keep mentioning? "We can't be sure," And so on and so on. I swear I was just going to rip out my hair yesterday! Leave it in a nice little pile in the waiting room.
So I'm terrified. Yep. It's 7:30 am on a Thursday and I'm terrified again by what I don't know. And it sucks because all the well thought out questions and advance planning and research about chemo therapies and their side effects made sense on paper but today they will start happening to me. My body is getting an elephants dose of poison. My body will hurl back up everything I put in it. My strong, wolverine-like stout little self will start being fragile and I can't fucking stand that!! I wasn't sick till right NOW! And this is the part when I start getting better. As a wise man once said when I was terrified long ago of some ridiculously trivial thing "Best get a run at it if yr scared..." So there may be a little tidbit on the news tonight "Strange Girl Runs Through Door To Chemo Infusion Room, story at 11..". Every day is a series of navigational maneuvers in worlds completely foreign to me. I usually revel in this sort of thing, except in this case, some one has blindfolded me, shaved my head, cut my Achilles tendons, and said
"Go fight!". My initial reaction is "Go fuck yourself, you go fight! " To which a gravelly voice booms down from the heavens.......
"Ain't nobody here gonna go there for you....you've got to go there by yourself..."
Cancer really pisses me off!
XO

Sunday, August 3, 2008

Hiccups, Bourbon, and Gravy

I have decided the DOCTORS can't have everything. They can take my cigarettes, my hair, my deep seated need to nibble on fried cheese, they can take away my ability to wear v-neck t-shirts without scaring children, they can even take my boob....but they cannot have my bourbon!
No. No good DOCTORS...you cannot have it! Please understand, I don't want all of the bourbon, and I don't want it all at the same time. Excessive alcohol intake is a risk factor for breast cancer. The operative word here being excessive. My level of intake before this nasty business wasn't even close to what most good MEDICAL folks call excessive (and mama can drink). But the conclusion I have come to is that late in the evening on Saturday nights I will slip on down to my favorite bar and have a drink. Just one. Maybe two. And I'll talk to my good folks, and we'll laugh and I'll be normal until just a little past last call and good DOCTORS, you're just going to have to deal with it! I understand you all are trying to save this old grrl from death (and that I totally appreciate) but if I'm far gone enough to not enjoy a cocktail now and then good Lord what are we doing? Let me smoke in Paris, Bali, Australia and be done with all this nonsense! Fuck blueberries at that point..give me brie! We ain't there yet boys n' girls.

But, last night, in a fit of normalcy, great magic happened as it is wont to do in the middle of absurdity. Nothing too fantastic, really. Just a few cocktails way past midnight and then breakfast at a tiny cafe that reminds me of summertime in New York. And there were plates of toast and gravy, eggs, ham, potatoes. And my lovely friend had the hiccups and fell flat on 18th street to get rid of them. And the world was the world, nothing short of it, unencumbered, spinning rather lazily toward dawn. And we were there having breakfast, drunk, and fear let us be. Fear just stuck its spindly fingers in its pockets and turned North toward the river and let us be. Magic. Sometimes I forget how close this line is drawn next to the people I love, how they are as involved in this bullshit as I am. If I could bring them the head of this monster any faster I would.... But last night just hiccups, bourbon, and gravy.

Monday I get to go to the HOSPITAL again. Breast MRI. I get to see this thing's face. I get to tell it its fucked. They put the chemo port in Tuesday at 6AM. We are really going to have to have a discussion about the hours these PEOPLE keep. I go to bed at 6AM! Wednesday we meet with the good DOCTOR, Thursday they start pumping me full of poison, and Saturday the band has a ROCKSHOW!! Small bits of magic....chemo is just going to have to realize I have no time for its nonsense.
XOX
Miss A

Thursday, July 31, 2008

I'll Think About It Tomorrow

I woke up this morning (actually, late afternoon) and wasn't a cancer patient...until someone called me to remind me. I had every intention of pouncing on this day off with the same vim as always except I was cordially reminded by a well-intentioned person that I'm supposed to be sick. It wasn't her fault. She didn't mean to let the cat out of the bag. But for about eight minutes when I get out of bed, when m'brain is still all woozy from dreams, it doesn't register that I'm entangled in some nasty dis-ease. I'm just normal, and wanting coffee. I'm sure that mind trickery will fade with time but for the moment I love those eight minutes.
SO, since I'm going to have to have cancer today here are the vital stats:
1) They put the pump in on Monday. They have to shoot poison in me somehow so the port to my aorta will be installed by a mechanic next week. I will main line diet coke if they're mean to me.
2) I have a consult with the good DOCTOR Wednesday. I will likely ask him questions that have no relevance whatsoever like "Did working on a painting crew and not wearing a mask give me cancer?" or "I ate corn in New Jersey once. Did that give me cancer?" He will shake his head and try to be very serious.
3) Chemo starts Thursday! Awesome. It's like the Christmas season, a giant run up and then boom, it is upon ye! I hope it is as overrated as Christmas. I hope there are sales after its over.

So that's the important part. I know how busy you are darlings so get on with your day.

NEWS FLASH*** Did you know DOCTORS OFFICES cannot communicate with each other to save their lives. I've gotten 3 phone calls in the last half hour regarding appointmets that I may or may not have next week. They better get it together quickly or I'm going after this thing with a Leatherman and a wet/dry vac myself!

If I get a bad grade at cancer I'm not sure what I'll do. Audit!
XO
Miss A.

Monday, July 28, 2008

In Triplicate, Please

So, CAT scans aren't fun. No. Not even sort of fun. However echo cardiograms are pretty cool. I got to see an ultrasonic picture of my heart today. I made a little shriek and a few of the men in white came in to see if everything was ok. I guess they get very little shrieking in the echo cardiogram room. My descending aorta makes a sound like a wildcat, I shit you not, it makes wildcat fighting noises. I found that infinitely funnier than the poor guy doing the test. I think he thought I was nuts, but, as I said earlier, I really don't care anymore. Joy happens.
But CAT scans, well. Drink all of this nasty stuff and then hang out for three hours and then drink more nasty stuff, and more nasty stuff, and then we'll shoot you up with dye that makes you feel like you're whizzling all over yourself, but you're not so don't get up in the machine, and then we'll give you a lollipop. The barium cocktail tastes remarkably like strawberry vodka and Redbull, both of which I despise. Felt like I was in some sorority nightmare. Blech!

Just a little aside. I have had to deal with HOSPITAL for roughly a week now, so it is a thing I am learning. I understand that the greatest feats of modern medicine take place within these walls. That terrible afflictions are cured, that entire organ systems are replaced, souls healed, all of it and I'm not being snarky, I mean it. HOSPITAL saved my mother from dying of cancer, and it will save me. HOSPITAL is amazing! But how come HOSPITAL can't figure out a way to consolidate the sheer number of forms poor patient has to fill out. It is a small price to pay I guess, but sheesh. I think I'm just going to walk around like Paddington Bear with a little note taped to my jacket that has all of my important information on it. I'll just download some generic forms and let each office put their special sticker on them. Maybe I'll wear a little Blue toggle coat too! "Hippa Laws, Hippa Laws," the nurse kept saying. I must look up these laws. Not sure if Hippa ever had cancer but dude its hard enough getting to the appointments on time, ease up on the dittos in the waiting room.

*I quit smoking today. That may be why paperwork has presented itself an insurmountable obstacle.

Sunday, July 27, 2008

Hope Is My Middle Name

It came in the house on July 22nd at 11:45 a.m. It crashed through the door and freaked out the cats, set the dog barking, and pissed off my husband. It promptly thrashed the living room, broke all the glass, blew out the light bulbs. It changed every word in every book on every bookcase. It made the TV speak a new language. It shredded every bit of clothing I own. It emptied the contents of the refrigerator, kicked the butter and the milk and the salad mix to all corners of the kitchen. And then it sat down squarely on the couch and said I had to live with it now.

I was diagnosed with stage III inflammatory breast cancer on July 22nd. Not my favorite day. Those of you who are reading this likely know me. I was born Abigail Hope in New York City, grew up in the nasty pit of Detroit, landed in Kansas City by way of strange accident. I am 31 years old. I am a singer, a writer, a guitar player. I've spent the last five years touring on and off with a little rock n' roll outfit. I am a lover of all things small and bewhiskered. I would rather get cheese than flowers. New Orleans, Paris, and Lindenlure are my favorite places on earth.
I am confused by technology. I have always believed it a time thief. But I was encouraged to write this by friends who know me well and know I cannot experience anything without writing it down (ex-boyfriends hate that). To spare the world a barrage of cancer songs, I figured I'd write down this stupid bullshit cancer thing word for word, note for note, indignity after indignity, because I want ya'll who I love and ya'll who I don't know to know I will be OK. I want you to read this and I want it to scare you because it scares the shit out of me.
I want you to know that the minute I stop writing, I start dying, and I've got no time for that! I have a record to make and shows to play, and shifts to work, and my husband hasn't quite figured out how to clean a bathroom yet, and my mom needs me to get her coffeemate, and my overweight cat needs someone to keep her on her two mouse diet, and the lawn needs to be mowed! So basically this ugly thing that busted into my living room on Tuesday needs to shape up and start living right because I have very little patience for its bullshit. Cancer, you listening? I'm serious. You picked the wrong bitch to fuck with, buddy!
This is the first Sunday I've spent with cancer. It's usually my day off. I don't think cancer gives you a day off. No "We'll call in Rickets to cover your shift, enjoy the afternoon." No "Scabies really needs the money, she'll pick up Sunday for you". I don't think I'll have a day off until sometime in the middle of the next calender I hang on the wall. Every Sunday I usually shuffle in here around noon and start milling about on the internets (all 6 of them), drinking my coffee and smoking my beloved Winstons. I am enjoying it to the fullest, let me tell you, because I have to quit tomorrow. Yes, I know, smoking is bad for me. But that's not why I got cancer. I got cancer because I'm a liberal who has gay friends! (By the way, if we don't deal with this with humor darlings we cannot continue this conversation). Sunday is usually full of cooking elaborate meals full of butter and cream and bacon, french things, complicated dishes with fancy names. There are no fancy beautiful names for the things I will have to eat now. Broccoli Naturelle, Jus d'wheatgrass, broth au poulet, yick yick!! One more injustice of cancer, bacon fat is often frowned on. So is bourbon.
So Sunday. My sweet non-secular Sunday, my day of rest and Law & Order will now and hereafter be spent gearing up for the Chemo they'll be pumping into me for hours at a time. And somewhere in the deep cold of wretched February I will spend a Sunday weeping, almost assuredly, for the breast they'll cut off of me. All my sweet rabbit yard friends and twitchy sparrows I see out the window now will be sleeping and I'll have nothing fun to look at. We'll cross that ugly bridge later and if we have to put bunny ears on the dog and send her out into the snow to make me smile, she'll just have to cooperate. She's been given free room and board all these years, its time for her first "real job".
My darlings if you've made it this far in this inane rambling than you care so we will talk a little bit about what you can do for me. I find that with cancer, everyone wants to do something, which is awesome, except now even people who I know don't have cars are offering me rides to the doctor.
1) Don't believe the B.S about how only little old ladies need mammograms. Get your sister's/mother's/wife's/cousin's/girlfriend's boobs on that machine "stat" (cancer teaches you cool hospital lingo). For all the lady musicians, I know you don't have any money. I don't have any either, but there are free mammogram programs all over this city. With my kind of cancer a mammogram wouldn't have necessarily caught it early, but mine is rare and weird and if you're freaked out over that than I am doing my job!! Look up inflammatory breast cancer, know what it is and how it works, and don't let anyone tell you you don't have it until they've done a biopsy.
2) Dudes I love, just don't get cancer. Figure it out. Start living right. Drink five nights a week instead of seven. Ease up on the invincibility malarkey and know you are just as fragile and precious as us "little women". I know if my uncle is reading this he knows that serious running keeps you young. He's getting up there in years and still looks like superman, but for the rest of you tattooed-PBR swilling-Parliament smoking-black t-shirt wearing fools, walk to the liquor store. Do it for me.
3) Let us keep the positive affirmation business to a low roar. My grandfather had a saying "Everyone's got their own way of doing business" and since Charlie was the smartest man ever to roam this dark and pretty world I respect that. You may deal with life altering news at church. I have always preferred the bar. I respect both ways of praying. I had a dream on Friday, and mama don't dream, but it was vivid and wonderful. I saw this whole thing play out. I saw my hair fall out, I saw the dark-lit chemo rooms, I saw myself on a gurney being wheeled in for surgery, i saw the scar the knife left, i saw me smiling...and all the while there was no sound except for a weird bird in the right corner of the frame, a crested bird with a white neck and a black beak and it kept squawking, rather strangely, "The White Light Will Beat It, The White Light Will Beat it". Now I don't know anything about all of that, but it comes down to you have your bird and I have mine.
4) My friends and I have decided to deal with this with humor. I can't deal with it any other way because it's so absurd its funny. I don't mean to offend anyones sensibilities here, but please laugh with me. Please please!! I need you to do that. I don't want a casserole. This is not a wake! We need to laugh at this, laugh loudly and make this ugly thing self conscious and uncomfortable so it will shrink away and die! For example, the best one I've heard so far is "At least you're not pregnant, that's terminal!" Tee-hee. C'mon, lighten up! That was funny....
5) Understand that this will likely get dark at moments. I know nothing of blogs, but my general understanding is that they are musings, rants, the confessional entrails of anonymous people's lives. Basically all of the shit I've tried to keep out of my songwriting for the last five years. The economy of words is as sacred to me as the economy of notes. Get in, get out, and nobody really cares about your ex-boyfriend, they care about their ex-boyfriend. I'm not quite sure what this is an exercise in, I'm not even sure if it's cathartic yet, but then again I don't know when a cheeseburger is going to taste like a cheeseburger again so there you have it. But I have a problem with honesty. What little bit of a filter I still had left has evaporated at this point and a lot of this may just be me saying the quiet part out loud. I think everyone should do that more. We can spend lifetimes not saying what we mean. I think that cheapens us as people because ultimately, if we do it long enough we end up not meaning what we say. Our words become bullshit, censored renditions of our lives, scripted bar-talk, trite and hollow conversations. I will write this all down. I've got no time to filter anymore.

So yeah, I have cancer and I'm scared and I'm pissed and I'm going to be fine. My middle name is Hope. My mama gave it to me "just in case". Smart lady, that mother of mine. So today, Sunday, June 27th I will smoke every last cigarette in the damned house, make out with some bacon, have band practice, go to bed, and start kicking this thing's ass tomorrow!

XOXO