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!
Tuesday, November 25, 2008
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.
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.
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.
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.
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.
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.
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.
Subscribe to:
Posts (Atom)