Wednesday, July 29, 2009

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.

Thursday, May 14, 2009

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.

Wednesday, April 29, 2009


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.

Saturday, April 4, 2009

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 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

Tuesday, February 17, 2009

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 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.

Sunday, January 18, 2009

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 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.


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.