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.