Bend in the River

It has been a year.

A year ago I didn't think anything would ever be alright again. The sky would always carry unbearable weight, food would always taste like metal, sleep would never be unbroken. I never thought I would ever look like myself again, feel like myself again, be able to concentrate for six minutes without thinking about sickness. Disease. Dis-ease. Nothing easy.

I am glad I didn't know what I was getting into. Nothing prepares you for cancer. Read all you want, go to doctors, talk to people. Nothing will prepare you for the weight of your breath in the quiet of the night when the world falls down. And the world will fall down. In big booming pieces, every single day. My body just stopped acting like my body but I made it do what it used to do anyway. I made it go to work. I made it walk. Then I made it run. Then I made it run again. I made it get on stage and sing. I had no idea how bad I actually felt. I had just assumed I would feel that bad forever. And I wasn't going to sacrifice the living part. I wasn't going to curl up into a ball and let the blackness settle in my bones anymore than it actually had. The human spirit is all well and good, but human will trumps it in its general tenacity and single-mindedness. The spirit is like a bird. The will is like a badger; mean, scrappy, and close to the ground.

I used to go to Rye Playland when I was a kid. This cancer bit is a little like the Tunnel of Love on the Midway. Those things were always creepy and weird, much more reminiscent of crossing the River Styx than an opportunity to make out with anyone. There is this life in all its color and noise and familiarity and you get in this boat and begin sailing away from it. Everything gets quiet. Everything is dark. You have no idea where you're going but you know you're going forward. You cannot go back. It stinks. The dude operating the ride is sketchy at best. He has no answers. He has no teeth. You realize "this ride sucks" but you cannot get out of the boat. You cannot get out of the boat and the blackness and the strangeness and the nastiness start closing in around you. You can't take one more minute, not one second more, when all the sudden you turn a corner and light comes tumbling in. You come out of the Tunnel blinking like you'd never seen the sun, never seen color or heard the dulcet strains of Nenah Cherry being pumped from the speakers by the bumper cars. This world on the other side is totally new. You step out of the boat and the ground amazes you in its solidness. The blueness of the sky overwhelms you. Cancer is one fucked up carnival ride my friends! May you never be tall enough.

Relearning the life left behind before it all went to hell in a hand basket is proving to be a strange endeavor. I'm realizing I cannot do everything....but I can certainly try. Meaning is found in strange and quiet places.

My hair is growing back. I look like a six year old boy. I am not complaining. I no longer look like a baby bird. Yay! I do not live at the hospital. Food tastes like food, just in time for real life Milo peaches and Odessa sugar melons. And Bourbon still tastes like Bourbon, every once in awhile. Bit by bit these nasty remnants of the last months fall away, like ash, like armor. Several things trying to kill you all at once can be a bit taxing. But I never knew. You don't know how tired you are until one day you aren't tired and remember what it's like. It's best to not know.

When I go back to see the Captain I see women who I haven't seen before. I remember seeing women like me when I was first diagnosed with he funny boy hairgrows. I look at them and know completely how hard it will be. It will be a long hard haul. And you won't really know until the bend in the river, until the light comes tumbling in. But it will. It will.

Puma Cancer Shark Gun

It went as well as it possibly could.

The pathology report said no evidence of cancer, 1.5 cm margins, scar tissue left where the radiation had done its thing, lymphatic removal successful, evidence in only 2 nodes. Basically as awesome as these sorts of things can get.

I remember a world-spinning parade of everyone I love, a basket of flowers, cookies, a stuffed cow, and really awful pancakes.

Through my haze of efficient and fantastic narcotics, I recall the moment the weight finally lifted. I was not sleeping in the hospital room dark, just sort of slipping from nod to nod. But I do remember turning my head to see Christopher, all six-foot-something of him, crammed onto the little hospital room "couch" out cold. For the first time in nine months he was sleeping. Actually sleeping. That terrible thing that had been crouching in the corner of our days was gone, beat back, surgically removed, hopefully in the back of some bio hazard truck on its way to anywhere else. We would get up tomorrow and tomorrow would be different.

Over, however, well...not over. First there has been the nearly insurmountable obstacle of not doing anything of any use for several weeks. This has been a hard road but no one prepared me for the trauma of sitting on my ass watching paint dry. "It won't be so bad," the nurse said, "Just don't pick up anything over five pounds and keep that left arm above your heart a good 45 minutes a day, and no digging, or pulling, or lifting heavy things and you should be fine." Awesome! Except she was talking to a Les Paul playing-amp hauling-vegetable planting-lawn mowing-flour and milk jug using-dog walking-cat scratching WAITRESS! AARGh! Not so good at patience. The tendons in my left arm are tight and they'll require a little work to get back to fighting form. And the nerves in my arm have been monkeyed with so they hurt and are sort of numb at the same time. Otherwise unscathed, just bored.

The scars are going to be pretty tough looking indeed. I go back and forth on the "no boobs" issue. I'm not cool enough to just dismiss it. I had a nice rack. They will be missed. They will, however, not be down around my ankles at sixty either so I've got that going for me. They were also trying to kill me and if you've ever had something trying to kill you (puma, cancer, shark, gun) your warm fuzzy psychological attachment to it/them changes...alot. I look like I got into a hell of a knife fight in Juarez or some other exotic locale. Tough super cedes pretty. I'd rather be tough and alive than pretty and dead.

So we sleep now. Real sleep. I lift lighter things. I ask for help and watch weeds grow. But for all my bitching I am grateful. So grateful for so many and almost entirely incapable of expressing it because there are not words, really. Through so much of this words have failed or fallen short. How do you say fear beyond fear or joy beyond joy?

It may come back. It may never come back. There are no guarantees. Some cellular slot machine lined up just right and I got cancer. Then the universe lined up and kicked it to the curb. Such is the way. Bad things happen. But so do good things. They are not mutually exclusive.

Frost said, "The best way out is always through". There is no other way.

Gone

In fourteen hours this part ends.

I've been thinking on it for nine months, how tomorrow will go down. I want to close my eyes and wake up with whatever this is that's been heavy on me all these months to be gone. I am hoping something like that will transpire. I am hoping for release.

I am not afraid of pain. Pain is real and temporary. I will miss my boobs, yes. I'd be lying if I said otherwise. And to act like I'm not terrified about the next part would be dishonest. Figuring out what the hell I'm going to not do for the weeks I'm going to be laid up is also rather daunting. I am really bad at sitting down.

I've run through it all, freaked out, cried, thrown things at the wall. Regrets for what could or might have been are hollow and useless. There is no time for that. Loss, yes. And anger, a little bit. If I could just take the fucker outside and beat it bloody myself I would......but I'll leave that part up to the folks with the medical degrees.

I am no longer who and what I thought I was. What was important occupies so little of my time now I wonder why I wasted so many years on it. There are better things. Getting to them isn't easy.

So tomorrow, April 30th, at 10:30 am.

I'll be the one with the bells on.

3rd Annual 29th Birthday

My birthday is next Wednesday.

We've been at this cancer bit for about nine months now. Some people redo their kitchens, incubate children, get through one more year of college in that time. I'm not bitching, just counting.

It's not a long time. There are people who have been at it longer than I have. It's just weird to look back and see what was and what is and try to reckon the two. I am still the same yet completely different and it has happened not in years but months, days, hours, moments. Tiny little moments. When something blows up yr life you can either stay pinned under the giant concrete slab or try and get the damned thing off you and figure out how to get on with it. Not to be all "Footprints-y" or anything....

But my third annual 29th birthday is upon me so I figured I would scribble these little bits as I will likely need to be reminded of them in the months to come.

I have learned some things:

People are happiest doing what they love. The more time people have spent engaged in what they love the less time they spend taking their bitterness out on the rest of us. This holds especially true for anyone in the insurance field. (****The insurance folks, by the way, have decided they are going to pay...sigh..***********). Brings me to my next shocking realization..

Miracles happen. You can be walking along one day and bam $150 just blowing across the street. I would say "Yeah right" except it happened...in Brookside....in January. I looked absolutely ridiculous jumping up and down in the sunfresh parking lot looking for the hidden cameras.

I found the best one. And I married him.

Singing makes it better.

The weirder they think you are the less likely they'll keep you waiting.

Hair, and all of the things having it entailed, required way too much of my time and smoking required entirely too much of my money. If I never got cancer I would have never known I really did have better things to do.

My lawyer is like a wolverine. Do not make the wolverine angry.

Saints walk around. They just walk around and make you take the day off or organize benefits or play in yr band or send you little notes or bring you muffins....just, you know, out and about in the world.

Every mile I run is a mile between me and that stupid disease.

2 cats and a dog make a living, breathing, shedding syndicated comic strip.

Most things really aren't worth it, but the things that are really are.

Faith is tricky.

Things will change and you can wail and fight like a stubborn sob, but they'll just change anyway. Life doesn't really give a rat's ass if you liked the old way better.

I have no time to humor assholes anymore. Just be nice or fuck off.

Food made with love can heal. So can a cocktail.

Once yr in it, it ain't ever over.

Its ok to be the person in the room with the fewest social networking devices on the table.

Forgiveness isn't so hard. Forgetting is not so easy. I have a memory like an elephant and it gets me into trouble.

I should take my pain medications. I am not fooling anyone.....

I will go in for surgery in May, sometime. Its kind of up in the air right now. The radiation wasn't so bad. Compared to chemo it was a cakewalk, except for that nasty little 3rd degree burn incident....but really, one woman's burn is another woman's "resurfacing", right?

I want it all to be over. But I want a pony too, so..

But it's April. And we have a show tonight. And we're making a record. Billie McWizzlers and Lu are sleeping next to me, and Otis is plotting world domination in a drawer in the next room. Chris is sleeping off the Stoli. I am contemplating needlepoint.

Time wounds. All heals. -JL

To The Bone

He was not going to wear the suit I bought him for Christmas to my funeral.

My mother wasn't going to put her entire family in the ground.

These things were not going to happen.

My appointment with the Captain the first week of February didn't go so well. Having started the new super-chemo pills (after lots of financial wrangling) I guess I had wanted some sort of measurable improvement, some magic sign that this stuff was working. My bones hurt but otherwise I was feeling OK. The redness wasn't going away. I ended up on the Internet and looked up "bone pain". When cancer and bone pain are mentioned in the same Google search the results come back "Metastasis".

At the appointment I explained my symptoms. The Captain examined. He is not a man prone to fits of glee, but he seemed defeated. It wasn't my favorite day. Words like "terminal" and "will" were bandied about. My tears were thick and hot and absolutely silent. We would have to do a new round of scans, he said, to re stage. To re stage from IIIb to IV. From possible to impossible. Bone pain was not a good sign, he said. We would wait and see.

Thing is, when you're thirty-ish, that sort of conversation doesn't even enter into your realm of even improbable knowing. That appointment was on a Wednesday. The scans were scheduled the following Wednesday. I have known long weeks in recent memory, but never one as long as that.

Who gets the guitars? This is where I keep the bonds, the checkbook, the account numbers. Anything will go to my Christopher, won't it? Please make sure, Mom. I've always wanted to go to Paris in the summer...and Spain. The college debt, it just goes away doesn't it? How do you do everything that needs to be done, feel everything you always thought you would have time to feel? Those days after my appointment were a tangle of questions strung on a wire of impossible urgency. How do you tell someone how much you love them? What words can be used to explain how badly you don't want to die? How do you bear the weight when someone tells you how badly they don't want you to die either?

It is a strange thing, staring down your short life and realizing you aren't quite ready to give the damned thing up. It happened while I was folding the laundry the Sunday before the bone scans. We all don't want to die, yes, I get it. But we don't ever think of it really, or at least I never did, in more than a philosophical sense. If you have kids, I am told, you tend to more fully realize your mortality. I guess if you have big piles of money you may think on it in a financial sense, but that may be the extent. I was just putting away the socks and I realized in an absolutely basic, practical, unemotional way at a precise and measured moment I didn't want to not be here anymore. I just wanted to still be here.

Forget every loss. Every single one. The hair. The breasts. The toenails. The kids I may or may not be able to have because of the damned chemo. Screw the pain. Pain is pain. It is unimaginative and boring. Scrap the frail myth of security or safety, the invincibility of youth, the permanence of beauty. Those things are long gone. My skewed notions of fairness or goodness are weeks past righting in any Christian sense. These breakable parts of me have broken. Crumbled to dust. But what is left of me cannot bear leaving the one I love. Simple.

It's silly really. I've had cancer for months now. It seems I should have had this epiphany weeks ago. And I have. In a very billowy-ray-of-light ain't-it-good-to-be-alive kind of way. I want to live, however, without any exceptions. No breasts? I'll take it! Armless, legless, skinless? Fine, yes, sign me up! I will scare little kids, but OK! I will not leave. I want to get up every morning. Period.

All of the niceties, the fringy, lefty do-gooder-ness of my general makeup, means nothing if I am not here. What I want to do will have to wait until I win the fight for the right to do it.

Last Wednesday I went in for bone scans. And I prayed as much as a godless heathen can. There are no atheists in foxholes. The white light will beat it.

I also went in for my radiation tattoos. The Captain thought it best to line up the big guns, as it were, if heavy artillery were needed.

I can officially update the worst day of my life. It might seem to the ordinary onlooker that July 22nd would be the obvious choice. While being diagnosed with Inflammatory Breast cancer was a pretty bunk-ass day as bad days go.....February 11th may have beaten it out by a nose. All that work all that loss all that pain all that all that and for what? One long protracted awful goodbye?

My bone scans came back clear at 12:30 pm on February 12th. The nurse said "The bone scan came back clear " and the invisible weight broke away. I held onto Chris in the afternoon-lit kitchen, refusing to let go, as if somehow that miracle would evaporate if I allowed a space between us. It was, after all, the thing I was being granted the ability to do. I was given the opportunity to fight for this. I am wary of all good news. As I have said before...you never know...the light at the end of the tunnel may be a train. I will fight for this. For however long the fight will have me, unconditionally.


So I started radiation today. 28 days, every day, maybe twice a day. Theoretically, the tumor will get smaller, it will melt (!) the cancer in the lymph nodes. This will make it possible to do surgery. There are absolutely no guarantees, in anything, ever. Cancer is a giant mystery. But so is living. When they collide and start throwing down, results may vary. It is part of the game.

Love those you love. Tell them you love them. Do not suffer fools. Do not make excuses. Life is too short.

Life is too short.

Really. No bullshit.

WARNING: The Following is an Over Statement

Its been a long while. This Christmas shall go down as the sickest Christmas ever and I don't mean that in a 14-year-old-skater-kid kind of way.

The first news I received, after I took 2008 out back and beat the living shit out of it, was that my darling insurance company will be denying ALL of my claims associated with breast cancer.

Apparently having boobs is a pre-existing condition.

This is the part where I get angry.

I've been sort of alright with everything so far. Stage III? Well, that sucks....You tell me the drugs may make my heart explode? Hmmmm...well, I'm a team player. Yes, I'll quit smoking and drinking and I'll start running if you think it will help. I don't really need to eat so much red meat. Yes, I'll be there, two, three, four times a week and not be late, never ever....you all are keeping me alive right. I will never miss a treatment, dosage, appointment. Puking and complete exhaustion will be tolerated indefinitely...I understand. We'll just keep trying....some drug will make the tumors stop growing....whatever you say dude, you've got the degree...

All that I can handle...with relative grace, mind you, less a few episodes of utter desperation. (I think I'm allowed an episode...OR TWO..).

But what I absolutely will not tolerate is being FUCKED WITH BY THE INSURANCE COMPANY.

They have dragged me through a five year review which began in September and was just, as in a week or so ago, concluded. I'm assuming these people are completely inept at their jobs, otherwise there is no reason for it to have taken so long.

They have run me and the hospital and providers who have actually given me care around so many times all of us are not quite sure which way is up.

No one I speak to on the phone about my account concedes to calling what I have "breast cancer". It is a number, a code. It is "condition number 70836 as stated on your EOB". YOU FUCKERS!! Its cancer. What ails me is not some cold or chronic imaginary condition. It may kill me.

The burden is now on me to file an appeal. I must amass evidence and records and write an appeal on my own behalf trying to convince a giant corporate monolith to listen to me. This will be great fun.

I got insurance because I was tired of dealing with the healthcare system for the uninsured. I wanted to have the card that said I was tall enough to ride the ride. The card that would allow me, bleeding and broken, the luxury of prompt attention if I got hit by a bus.

What had spurred the initial getting of the health insurance was having to wait three weeks for a script for antibiotics last year. I'm not sure if anyone out there has had to deal with these places, the hospitals and healthcare providers that deal with the uninsured, but speed is not their strong suit. I cannot blame them however. They are dealing with the problem of the uninsured and under insured on a daily basis. They really truly are doing all they can.....slowly, but hell they're doing it.

The uninsured aren't lazy. They don't need better jobs. Most of them are denied full time hours by their employers so the employers don't have to pay for their coverage. 39.5 hours a week isn't lazy, but its not enough to be covered by most small companies group plans. ("Small business is the engine that keeps the economy moving"...blah, blah). That worker likely has another part time job that their first part time job keeps them away from so they can't get coverage at either place.

And who can blame business owners. Their primary reason for business is to make money. I get it. I wish the well-being of their employees was primary concern but I get that the world ain't a commune. I would like to change the way it all worked, created sustainable community pathways and all that....but the dudes in the suits really don't give a shit. They've got their own to worry about. The cost of coverage is often more than it takes to keep the motherscratching lights on. If the lights ain't on no one has a job. Its ugly the whole way round.

Declaring yourself "indigent" is a painful and awful thing. It hurts when you've worked your whole life and paid your bills on time and kept yourself above water and happy. To say that you are unable to take care of yourself and must have the taxpayers carry you is embarrassing, awful, heartbreaking. Many years ago I had to sign a paper in an emergency room in order to get treatment for a work accident that stated I couldn't take care of myself. That wasn't true....I couldn't afford a $5000-up-front emergency room visit but I certainly was taking care of myself. Some of us do think long and hard about the ramifications of what that really means. I come from a proud and self-sufficient people. Stories of how my great grandmother would never go "on the dole", even during the Depression, are legendary at the dinner table. The memory of basically being forced to ask for a handout has never left me.

I turned 30. My father died. It had taken me 3 weeks to get antibiotics. I was over it. I found a plan I could afford as an individual and bought it. I gave them my blood, literally. Three vials. I answered their questions. I paid my premium. I got their policy.

AND THEN I GOT HIT BY THE PROVERBIAL BUS!

I get it, insurance company. A thirty one year old woman with cancer IS weird!! Yes! I agree. No one thinks that is stranger THAN ME! I am not a sick bastard however and have not thought long and hard on how to defraud you as my cancer got worse and worse. Number 102-FT207 isn't that messed up in the head! Yes, dear insurance company, you've got me all figured out. I am the sort who would stand idly by, watching my own demise, for your awesome benefits (which, as it turns out, aren't that fucking great anyway). Did someone beat you all when you were young, you paranoid ass-hats? Christ.....

But the greatest crime really, the most aggravating, you've-got-to-be-shitting-me thing about this entire mess, is if I didn't have my wits about me the insurance company could just get away with it. They are intimidating as hell with all their paper and their numbers. What if there was a language barrier? Say I wasn't a primary English speaker? What if I had a type of cancer that was literally debilitating my mental function? What then? What if I was alone? What then? What if the treatments completely laid me out? What if I had no voice? No voice at all? Fuck me! What about all those other poor bastards in the world who won't fight because they are afraid or can't fight because they are too sick? What about them? They are all SICK people who tried to do the right thing and are hung out to dry for their efforts.

I work (quite a bit) but don't make a shit-ton of money. I qualify for financial assistance. That isn't the point. I don't want it for free. I want it for FAIR! I want to pay for what I owe. That's why I bought the plan to begin with. That's how you pay for healthcare in this country.

Seems strange that I now must begin a fight in the middle of another fight to be able to pay people. I could just say fuck it, let it lapse, and get it for free......but that safety net isn't for me! Its for the ones who can't fight. Damned either way, I suppose.

Apparently health insurance is for things like hangnails.

NUMBER 102-FT207 who has condition #70836 IS PISSED! I am not concerned with the quality of their sleep, but am confounded how anyone involved in the health insurance industry actually can sleep at night.

It reminds me of the people who slept so soundly in the towns surrounding the death camps.

An overstatement, you say?

The drug that is keeping me alive is $5000.00 a month. It is keeping me alive and my insurance company refuses to pay for a portion of the cost even though its covered in the policy I am paying for. I just shouldn't have gotten cancer. I should have gotten a better job. I should have gotten better health insurance. If I don't get the drug, I die. If the uninsured or underinsured don't get the drug they die too. But someone in an office in Kentucky or Minnesota or wherever gets to make these decisions, and their underlings carry it out, and someone somewhere gets a letter and throws up their hands and tries to hang on and finds they can't for very long......

And then they die.

They die.

They are overcome by a disease which they cannot afford to fight and they die.

Lots of them.

Tell me if that's an overstatement.

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.

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.

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.

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!

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.

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.

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.

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.

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.

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.

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

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.

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.

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!