Cold's On

There's only one heater vent in the whole house and I huddle there in the mornings, at least until I have my first hot flash of the morning. Lately, I swing from hot and sweaty to chilled and shivering and back again over and over and over. Lately, I have a few things I could complain about, but that's not why I'm here tonight.
Tonight I am filled with gratitude for the season. Gratitude and anticipation. Anticipation and relief. Relief and curiosity.
I love this time of year. I didn't always. I used to get really depressed this time of year, just in time for the holidays. But something's shifted, like things do and the change of light, the color of the trees and the shimmering movement of wind through baring branches, death in the garden (tomatoes rotting on their stems, peppers blackening and curling, cracking stems, flowers brown and shriveling),the juiciness of the ripening citrus, the shouting color and creepy squishiness of persimmons, and the last apples with their wrinkles.
I love the early dark, my bones and muscles and guts love the early dark and how it holds me.
I feel it happening, my insides responding to deepening dark, like a secret glee, like the pure, perfect seed buried deep in my belly is rubbing it's little hands together and grinning with excitement about what comes: the deepening of the soul's quiet, the profound rest of the surface movement...all that smiling, all that chatting done with for a bit.
I love the dark like I love the water, the enveloping relief on submersion, on surrender. It's everywhere if you look for it. Today I saw a variation on the "Mystery Spot" bumper sticker. Cut the thing in half and switch nouns and it's a suggestion: "Spot Mystery." The ground is soft. The sap in thick. Late at night, animals grunt and squeak in the compost bin.
And even if I can't sleep, I can give it all away...everything that's ever been given to me, given up into the dark star in the center of the earth. It is indeed the time of year of generosity and gratitude, but this isn't the kind anyone will ever see, not even you, because it's better if you shut your eyes.
Try it. Relax your face. Turn off all the lights. Let it all go.

This is a blog about Cancer, Breast Cancer, Metastatic Cancer. Not that I don't have other things to talk about.

I would like for other readers with cancer to be able to find my blog easily and I'm not sure how to make that happen. I thought I'd try this.

A Hiccup in the Universe

Just as the momentum was building for relaunching this blog, my computer expires. I've been using George's computer for the past few months, postponing the repair of my Dell. A couple of days ago, our computer friend took it and said he'd have it back in a few days ready to use. Then he called saying he'd repaired it and then the hard drive crashed. Luckily, he had a used hard drive he'd be happy to install at a good price. Do it, I said. That hard drive collapsed as soon as it became part of my computer. Everyone recommends a new computer.
Okay. I could kick and whimper and twitch, or I could buy a new computer. Actually the computer friend, Luke, has offered to build me a computer, this time a desk top. Oh how I've loved having a laptop, but it's true that I hardly ever moved it. It was too heavy to travel with and my desk is the most comfortable place to write. And this way, I can have a 20 INCH SCREEN!!! Whooooohoooooo!!!!!!!!!!
So, the momentum is idling a bit right now because I still haven't figured out how to download pictures on George's computer and I really love posting pictures on this blog. And we are leaving a week from today to spend two weeks in Southern Utah....in Zion and at Capitol Reef....without a computer.
And if I'm willing to make big decisions quickly, I could have a new computer when I get home.
Until then, everybody breathe.
Again.

Resurrection

I just spent the last half hour trying to download Van Gogh's painting of Lazarus rising from the dead. It's so perfect to go with this entry, but this isn't my computer and so everything had to go wrong no matter how many times I tried it, so maybe I'll go back and lay down and rise from the dead some other day. Like when I get MY computer back from the shop.
Yet, after all that effort I've built up some momentum, which is hard to come by these days.
With said momentum, I am going to say a few things here. I'm back. I'm feeling pretty alright, if you don't count the nausea and the fatigue. With a little momentum, I'm going to post my first blog entry in months. Jill, who has let her blog lapse too, just said it seems like so much effort for something that nobody reads. Well, she reads mine and I read hers, and I know there are a handful of people who read mine, or at least did when back when I was on fire for it and telling everyone to check it out.
I'm wondering: Does it matter whether anyone reads it or not?
What I think today is: what matters is that I do it. It's like that with just about everything, I suspect, though I have spent most of my life holding out for the big payoff. Now I'm not so sure there's such a thing. Now I'm thinking it's whatever joy I get out of doing a thing, and maybe all the better if nobody actually knows that I've done the thing. Or if I don't know whether anyone knows that I've done the thing. Then I'm not holding out for something besides the joy of doing the thing. That's what I think today, so far. And I think that's pretty good, considering I have just risen from the dead.

Nocturnal Beasts

There was a time when I imagined myself nocturnal. It was an image that went well with writing: the gaunt and haggard scribe throwing candle shadows all over the walls while the rest of the world wasted their lives with Mr. Sandman. I had sharp teeth and my eyes burnt through walls.

You can only hold on to a fantasy like that for so long. Especially when you really love sleep. I love sleep. I love everything having to do with sleep: beds, pillows, sheets, darkness, lullabies. I once thought I would make a good midwife. Then I realized that midwives lose a lot of sleep. I once had a bed that I used to fantasize about during the day.

I am not nocturnal, but my friend Frank is. She was born for sleeping most of the day. And most of the night. The rest of the time, she attempts to fulfill her destiny as a hunter. Birds, mostly, but mayflies, moths and dragonflies will do.

Or me and a full night of sleep.

All through the winter, she has been my hot water bottle, my heart warmer, irresistible when she climbs under the covers and stretches out with her back against my belly. Compared to her sisters-huntresses, Taz and April, Frank has been angelic. Where Taz has been short tempered and quick-clawed, Frank's been tolerant, a balm, a bean bag. Where April has been demanding and cranky, Frank's been generous and serene. A buddha with black fur and golden bedroom eyes.

Now it's Spring and the other night my sweet bunny became my evil nemesis. Or was it this morning that I woke to the sound of claws on wood, a sound that struck deep to my marrow. At first, I thought it was a wild animal clawing at the side of the house, then perhaps an animal accidentally locked into a bedroom. Then, I realized it was Frank, on her back under the bed, propelling herself from top to bottom and side to side with her claws. I grabbed her as she slid across the carpet with the grace of an ice skater. I pulled her up onto the bed, where I was fully awake. She was panting and joy poured off her in a halo of shed hair. As soon as I fell back to sleep, she returned to her gleeful gliding.

So yes, I sought revenge, waking her every time I caught her stretched out in a spot of sun, singing into her twitching ears that song "Are you sleeping, are you sleeping, French word, French word, French word...?" But I couldn't match the delirious giddiness with which she had interrupted my already patchy sleep.

Last night I had the best night of sleep I've had in a long long time. When I woke up, Frank was wide awake beside my head.

Singing

Requiem for your Toes

Lately it feels as if I've only just begun to grieve his loss. It's amazing how long it takes to really get it that he's gone. Denial is such a precious gift sometimes. I don't pretend to know how it works. Perhaps some unconvinceable part of my brain holds onto the idea that he's going to come back, that it's impossible that he's gone, that this can't be. While I've absorbed the common knowledge that we live and we die, that none of us is going to be around forever, that our days are numbered, there is this surprise I did not expect. Two years later, it hurts worse. Two years later, I still think "This can't be."
It is. Two years ago yesterday, Daniel Glen Mills, my little brother, died of pancreatic cancer. Two years ago tomorrow, I flew into Salt Lake City, where my sister-in-law picked me up at the airport, then we drove from store to store buying stacks of newspapers (containing his obit). Later that afternoon, we went to the funeral home, where we bathed him and dressed him in his burial clothes (he was Mormon and they get dressed up in white). I remember his toes, white and cold and beloved.
So, I know he's dead. I saw his body. I touched his body. He wasn't there anymore.
When he was there, he was amazing. Everyone he ever loved knew themselves to be loved. He had a way of surprising you with his sense of humor. And he laughed along as if he'd surprised himself. He made me laugh every time I saw him. He made strangers laugh. He had a straight face and a fiendish delight in life. He was a Mormon, but he was not what most would expect from a Mormon.
When he first converted, I was living with Diane, my partner at that time. He wrote me a letter saying he wanted me to know that his converting to Mormonism didn't change any of his feelings about me or Diane, despite his new church's stance on homosexuality. We were, and always would be, family. He said he didn't believe that god left anyone out of his love and he refused to let the church's narrowness limit his heart. He and Al continued to visit us and to make us part of their family.
Daniel had a heart I strive towards: big, inclusive, tender, fiercely loyal, stubborn. He knew more about love as a verb than anyone I've known so far. He screwed up as much as the rest of us. He left his wife for another woman when their youngest was six months old. And he came back. When he was 20, he went to prison in South Carolina for two years for having sex with a 13-year-old. Right before then, he married and fathered a daughter who was then taken away from him. He could be a self-righteous asshole. He liked to argue. He liked to be right. He was a terrible driver.
He'd been sick for four years before he was diagnosed. He'd gone to urgent care over and over with excruciating back and stomach pain. They didn't find anything. Right before they discovered the cancer, a doctor told him he wasn't going to get anymore pain medication from him because he thought Daniel was working him. He was diagnosed the week after he graduated from college with his degree in systems design. He was already enrolled in a master's program. He was 37 years old.
I already knew that life is not fair.
I just had no idea how much I would miss him. And for how long.

At a Loss for Words

It's not that I haven't had anything to say.
Who knows where these gaps come from in the life of a writer. What I've learned in my 40 years as a writer (I won a poetry contest when I was 12, but I started writing when I was eight.) is that I always stop and I always come back. It used to scare me. Maybe it still does.
Some call if writer's block, but I could have written if I'd really wanted to. For me it is more like a momentary lapse in ambition, or maybe just pure laziness. Lately, I've preferred reading others' writing. I've been devouring books with a ferocious appetite: six in the past month.
Or maybe I have too much to say and I lose the ability to gather it up in my arms and work it into something I can handle. So I just let it all roll around until it's compacted enough to pick up again.
When I've thought about writing in the past month, this is what I've thought of: Daniel, who on April 4, will be two years dead; the temporary nature of feeling good; sex without estrogen; Daniel; the hike Dan and George and I took at Big Basin; Daniel; sleep and lack of it; living as if I have 20 years; and Daniel.
I'm not quite ready to write about Daniel. I still have a bunch more crying to do about that.
But I am ready to write again.

I Love to Smoke

I don't smoke anymore. It's bad for me.

I stared smoking when I was 20: Benson Hedges, in a silver pack, with lots of whiskey. I remember the night. I had just left my husband. I was at my co-worker Jennifer's house. She was married to a soldier at the time and they were having a party with lots of soldiers and a few other girls. Women, I mean. The room was full of smoke and laughter.
It couldn't have been my first cigarette, but it was the first time I smoked without coughing or getting nauseous. The whiskey was key to my success with smoking that night.
Over the years, I smoked Benson Hedges Ultra Lights, Phillip Morris, Camels, Marlboros, and whatever other people were smoking. When I moved to the woods, I took up rolling my own Drum. On special occasions, I smoked Dunhills, Kools and clove cigarettes. When I was trying to quit, I smoked Bidis. The most I smoked was a pack and a half a day.
Mostly I tried to quit smoking. I'd go without anything for a couple of days and then decide that I could probably just have one after dinner. Then maybe one after lunch. I'd go out drinking and smoke half a pack and then I was smoking again until a couple days later when I'd quit again.

What I really want to talk about is how much I love to smoke. Tonight, I miss smoking. I've been eating chocolate chip cookies, imagining pulling on my jeans, getting in the car, driving up to Mission and Youngblood to the liquor store there and buying a pack of, maybe, Kools (the luxury sticks of my final smoking days). I'd come back here and sit on the curb out back on Dufour and look at the full moon. And smoke.

Then I would feel like shit.
Not just guilty, but dizzy and pukey. To do it right, you really have to do it more than once in a while. Or you have to drink booze. Otherwise, it just makes you sick, and horribly disappointed.
The last time I smoked, I ended up feeling so sick and bad about myself I had to call my best friend and tell her about it and cry and say I would never do it again. I mean, Christ. I have cancer. People don't like to see people with cancer smoke.

Take my little brother, Daniel.
I'd quit smoking. Then he got pancreatic cancer, or I should say, he finally got diagnosed with pancreatic cancer the week after he graduated from college at the age of 37. He'd had it for years. That's the fucker with pancreatic cancer: it's hard to diagnose. He was treated for back pain, tested for kidney problems, lectured about drug seeking, and finally after three years of pain and puking, someone thought to look at his liver: studded with cancer from his pancreas.

He lived about a year more and smoked most of that time, at least until his wife insisted that he stop. She didn't like the way it smelled.

I started smoking again that first time I came to see him after he got diagnosed. His 17-year-old daughter was our source. She was a smoker and we started bumming (and stealing) her Marlboro Reds.
First, we smoked on the front porch in front of god and everybody, including my brother's bishop (Mormons) who lived across the street. The next time I came to visit, we were sent into the garage where noone could see us. Then it was my brother's old car, parked in the back yard.

Then my sister-in-law said no, which made it more fun. We'd wait until she went on an errand and then we'd brush our teeth and wash and apply men's cologne. She'd come in and say "Have you guys been smoking?" And we'd lie.
At first, I just smoked when I went to Utah to see Daniel, which was nearly once a month. Then I started smoking in between.
Then he died and I kept smoking.

It was like a memorial every time I lit up. I'd think about the things we talked about while we were smoking. Smoking goes really well with talking. It's because secrecy and smoking, or maybe it's more like seclusion and smoking go together. Like in jail, back when you could still smoke in jail, the best conversations were out in the yard where the smokers hung out, and the guards (and the prisses) didn't.

Then I got cancer, or at least I got diagnosed with what had been making me feel like shit for a year or so. I thought it was just my brother dying that made me feel that way. And I kept smoking even though I was short of breath and had some tumors turning up in my lungs.

What the fuck? I'm dying, I thought. Why not?
It worked for Daniel.

It felt so good, especially with the pain medication. Outside of some of those last cigarettes with Daniel, it was the most pleasurable smoking I'd done in my life. Especially with not wanting to eat. Especially with all the bad news and the wanting to hide out. Smoking goes well with hiding out. It is also fine substitute for eating.

About the time I'd maxed out my credit cards, and realized that I wasn't dying anytime soon, I thought I'd better quit smoking. I was getting more and more paranoid about getting caught by my friends, who would have been horrified seeing my squatted on the curb in my pajama bottoms, my flannel jacket and my bald head, smoking my breakfast. I knew it couldn't look good: about as far from cool as I could get. And cool had always been at least one factor in smoking.

I love to smoke. I miss the hungry suck of it, the pure presence of heat and smoke rushing into my chest, into my blood, into my head, and blowing it out with everything that had seemed stuck in there. Free now, all of it, the thoughts, the fears, the oxygen. I love to smoke: the crack of the match, the dryness of the filter between my lips, the quick light in the dark, the inhale and exhale made visible. Tonight, I didn't go to the liquor store and I probably won't go tomorow either. Smoking is bad for me. I need all the breath I can get. I'm not dying anytime soon.

I know if Daniel was still here, I'd take one from between his thin fingers, lean into the flame of his cracked yellow Bic. We'd pull our collars up against the night cold, step behind a wall, or into a parked car where, laughing and talking, we'd smoke like we loved it more than life itself'

The test

Imagine you've been diagnosed with a fatal illness. You freak. You grieve. You tell your family and friends. They freak. They grieve. You quit your job. You look at your stuff through the eyes of the people who will have to pack it up after your funeral. You think more about god than you have since puberty.
Then you get a call. Oops. The test was wrong. You do not have a fatal illness. You are fine and dandy.
This happens.
Unfortunately it hasn't happened to me yet, but I'm still holding out for the possibility.
And how does it feel?
More often than not the erroneously diagnosed experience not relief, elation, overflowing joy, but depression. There have been studies. There have been knotted brows and pursed lips at this outcome.
But I get it.
A fatal illness is, indeed, a bummer. But it has its benefits. Having a deadly disease is kind of like having an advanced degree, an exceptional child, or a crazy relative. It distinguishes you. You are different from most of the people you know. Faced with losing you, your loved ones love you more than ever. I kid you not. This is not necessarily a bad thing.
Where it gets tricky is the result of the above study. Something's wrong and you start to identify with it. The illness, a source of loads of attention (some delicious, some dreaded), become part of who you are, part of your life. It creates definition. It makes you interesting.
I found in my work as a journalist that it's much easier to write a profile about someone dead than someone alive. A potentially fatal disease provides structure to the story of your life. A beginning, a middle, and an end. It cleans up some of those messy loose ends, like the fact that you haven't saved up for your retirement.
You are not your cancer.
I have heard this expressed many times as a form of encouragement, perhaps with a little bit of chastisement as well. I know what they're trying to say: that you are still a viable person, with other interesting things going on in your life besides xrays, nausea, dr's appointments, chemo, ct scans, disability forms, insurance forms, trips to the pharmacy, constipation, difficult questions from family members, inappropriate questions from people you don't know well.
I am not my cancer, but my cancer is me and is now my vocation. Keeping myself alive and lively, above the dark waters of despair is now part of my avocation. I am not my cancer, but I am not who I was before that fateful summer day in a surgeon's office. I can't say that I'm better or stronger or more in touch with what life is about. I just know that I am bigger than all of it.

Live Long, Live Cranky

My mom is certain I am dying. She has proof: a photograph.
I have seen plenty of photos of me before I had cancer that would convince you my time was nigh. But this one, she claims, is the clincher. Proof that once again I am either in denial or lying to her.
I haven't seen this photo. I can only imagine.
My mom has been certain I was dying since I got diagnosed. She has told folks that I am in denial about the severity of my disease. My mom wants to talk to me about my funeral. She wants me to process my feelings about dying with her. She wants to come and take care of me in my final days, which, according to her, are now.
Me, I am very much alive. I just got back from a brisk walk to the ocean. That was after a half hour of yoga and a load of laundry. I am headed out to meet friends in an hour and this afternoon is my two and a half hour stress reduction class. My fantasies these days are of a new career, going back to school, walking across Ireland.
The cancer in my soft tissue isn't currently growing. The cancer in my bones is growing in bits and spots. I have some pain. I'm a little achey. My tummy aches sometimes. My most recent blood work looked good. My tumor markers are the lowest they have been. My oncologist thinks I have years in me.
I am so pissed at my mom that she won't believe I'm doing well. This is my mom through and through, clinging to the worse case scenario and missing the good stuff. The hardest part for me is not trying to convince her otherwise. I should give up.
But then I think perhaps living long and hearty is the best revenge.
My mom's insistence that I'm dying just might keep me alive. Some days I'm so mad, I think: this could cure my cancer.

Dangers of the Amazon

In the newest "Outside" magazine is a story about a bloke who plans to swim up the Amazon River. I think he's swum the English Channel and now he's bored. The article listed the dangers he's facing in the murky waters of that legendary river. There are the pirhana, of course, and sharks. But what caught my eye was the little fish, the candiru (sometimes referred to as the "willy" fish) that swims into one's urethra on a stream of urine and imbeds itself with barbed fins.
That's it, I thought. That's what's happened to my urethra! I have a fish swum up it.
Actually, not that long ago I had a doctor swum up it with a stick and no real warning of what that might feel like for the week that followed. The nurse handed me a gown, told me to quit my undies and asked if I'd had this procedure before. No, I hadn't. I was totally a lamb. She said, oh she'd had it once and it wasn't so bad. I had no idea how bad so bad could be.
Imagine the fish. I bet it felt about the same.
Now that I've got you this far, I'm sorry to say that this isn't a story about fish. I'm not sure it's about my urethra either. See, I've got this pain and I'm scared about it and I quite like affecting this semi-British accent thing (I've been watching "Foyle's War"), and talking about a fool who's dead set on swimming up the Amazon. It's making me feel a bit better. It's not like I'm wishing the fish on his urethra. I wish him no harm.
What this is all about really happened first about two weeks ago, I figure. I'm not good about keeping track of unpleasantries. I was driving home from downtown...Cedar Street, I think,nearly to the Police Station, in front of Louden Nelson. I had a sudden stabbing pain. In my vagina, I'd say. It made me cry out....like "Aaargh" (they don't have that on the pain scale, unfortunately). I was about to pull the car over when it passed. The next evening it happened again while George and I were watching a movie. I didn't cry out. I didn't want to interrupt the movie, and since I'd just had it the day before, I knew it would go away. But I closed my eyes and clenched my teeth. Like that. Ow.
Then it was so long since I'd had that particular pain (distracted by the others) that I forgot to bring it up when I went to the doctor's office a couple of days ago. Then yesterday evening it hit again and I had to get on my hands and knees on the kitchen floor. Now I have to say that I'm not sure it was my vagina. Could be my bladder. Could be anything in that pubic region. Anything that I've got left, I mean.
It felt like I imagined that guy in "Alien" felt, right before the new being burst out his gut. It felt like something was going to split or bust or emerge, new and bright on the kitchen floor. It lasted much longer that time. It didn't feel like it was going to go away without leaving a mark. I took drugs, put on the British cop show and things calmed down. Today there have been mild tremors in the same region.
Okay. These are the things it could be. Really really bad gas. Adhesions from my hysterectomy this time last year. The cancer on my bladder acting up. New cancer in my bowel or anywhere else round there.The cancer in my pubic bone doing a dance on some nerve. The Amazonian fish. I don't know. I WAS in the pet store a couple of days ago buying dead little mice for my snake.
Pain sucks. I can't say I've gotten used to it though it's part of my day to day life. I have adjusted to certain kinds of pain that have been around for more than a year and that the drugs more or less relieve. But new pain: fucked. Did I say fucked?
And this kind of don't-know-when-it's-coming-back kind of pain, this sudden, out of the blue, knock you on your knees kind of pain makes a girl nervous. When is it coming back? Oh, there's a twinge! Is that it? Or is it gas? If I think about it a lot will I make it come back?
This afternoon, there was activity in the same area, but mostly it felt like someone had recently kicked me between the legs, more like pubic bone pain. Tonight, it's more like menstrual cramps, only there's nothing there to be cramping. Oooooo, a mystery. Call Dr. House!!!
Who really wants to know about this?
You do, no?
There was a time when pain like this would most definitely send me to Urgent Care. Now. I don't know. What is anyone going to do? I can already see it. Someone will scratch their head. And order another test.
I think I'll wait and see what bursts forth. It could be interesting. It could be some kind of miracle. Kittens maybe.

A passion for ducks

One of the comforts of the early days was the reassurance that, if it hurt, it probably wasn't cancer.
What a relief. Until the other shoe fell and the doctor added, "Unless it's very far advanced." There are some kinds of pain that can be softened by opiates, and there are some that require stronger medicine.
In the past year and a half, I have read many books about cancer. Only a few have been courageous enough to really address the pain that results in a collision between serious illness and expectation. Recently I read a magazine article in which a German oncologist summed it up in saying that in order to heal (and I don't think he was necessarily referring only to getting rid of disease, but to many levels of healing), one must have a passion for something, a compelling reason to get out of bed in the morning.
I am not alone in suffering the pain that strikes when called upon to claim a reason to keep living when faced with physical discomfort, the loss of lovely delusions like "the future," the indignities of the health care system and the isolation of disability.
If it hurts, it's probably life.
There is a cult of heroism surrounding cancer. How often do you hear of the person who claims that cancer was the best thing that ever happened to them? Or the woman who climbed Mt. Everest or trained for a triathalone while still recovering from chemotherapy? Are there many diseases from which the sick are expected to rise from their beds to perform wonders? For whose benefit?
I've had plenty of time to think about what might be my crowning moment, my act of cancer heroism. Will I be allowed to die if I swim the English Channel? How about a pilgrimage across Spain? Yesterday I caught myself thinking about going to med school. It's not too late to realize my childhood dream of being just like Carol Burnett, is it?
One of the most common questions I'm asked, besides, "How are you feeling?" is "What are you doing with yourself?" followed by such prompts as "Are you writing? Traveling?"
I'm training for the Tour de France.
I'm writing a novel that you will never find in a used book store because people will be so blown away by its brilliance that they will keep it forever. Pass it on to their descendents. Teach it in the university.
Not really.
I have a passion. Well, maybe more than one. I've never been so good at settling on just one thing to be thrilled about. And now -with all the time on my hands left over from medical tests, dr's appointments, british detective series, telephone calls, visits to the toilet, novels I've always wanted to read, cleaning my closet, reassuring my mother, eating, googling med schools and writing for my small and beloved audience -I now have time to focus on being fickle.
These days my passion is ducks.
Ocean ducks.
Surf scoters. The ones with the funny bills, all the better for sucking limpets off rocks and sifting tiny mollusks from the sandy water of crashing waves. The orginators of a technique practiced by surfers who've found themselves facing towering waves coming in the wrong direction, known as the "duck dive."
Check it out, if you haven't had time to get down to the ocean lately. The surf scoters are here in numbers, as are big sand churning waves. They go together. Surf scoters tend to loiter off shore in large groups and then to come in closer in smaller groups. At the end of my street here on the Westside, there's a threesome that have taken on the wild surf at Fingerbowl. Where the waves are crashing into each other before smashing into rocks, surf scoters hang out like a gang of pre-teen body surfers. Only with funnier faces.
According to the Natural History of Waterfowl website, because of its glorious and massive orange, yellow, black, and white "Roman" nose, the surf scoter has also been known as Goggle-nose, Horse-head Coot, Plaster-bill, Snuff-taker, Blossom-billed Coot, Bottle-nosed Diver and my favorite: Skunk-headed Coot.
Why do I believe that the surf scoter may cure me of cancer just as surely as, say, broccoli sprouts? Or a jaunt up to the summit of Mt. Rainier?
Because when I stand on the rocks, close enough to feel the spray of the winter waves, I am a surf scoter. It's like when I watch boogie boarders in the winter swell. It's like when I watch a dance performance. It must be like what some people feel when they watch pornography.
I am in the waves with my powerful webbed feet. I rise with the incoming wave and just as it breaks, I dive down into the spinning world below. The force of the universe wraps my hollow bones tighter than love, combs my black feathers into a tight curl and lifts me up into the air with my wide circus smile full of mussels, limpets, snails and sand. And I go back for more. More.
More.
And I look just like a middle-aged woman, hanging out at the ocean, doing nothing remarkable.
Feeling no pain.

Nighttime Meds

My nighttime meds brought me back here. It's past my bedtime. My new healthy bedtime, two hours before the bedtime I've fallen into of late. The bedtime that falls long after I have fallen face first into a book. What happens is that I read and then my eyes close and I dream what comes next in the story and then I wake up and what I dreamt is not what the writer wrote.
I do this for a couple of hours on average.
I am determined to stop, which is why I must keep this entry short.
My nighttime meds brought me back here, telling me I could stay up for hours baring my soul. I could stay up all night writing about how much I love the people I love and why and how. If I didn't have a new bedtime, I would stay up writing about surf scoters and buffleheads. I've had buffleheads confused with goldeneyes and so much more. I would write about what marriage means to me now that I'm in love with the man I married and divorced. I would write about an amazingly brilliant and beautiful friend I have who makes me laugh and think and want to be a better realer person. I would write about three cats who are curing me with their tongues, late night sighs and bad breath.
Sometimes my nighttime meds bring me to tears, wretched, heaving, pot-scraping tears and sometimes to the back of the closet where I keep a box of photographs. Sometimes they bring me to an ecstatic gratitude for life and to my bookshelves where I pull down volume after volume, ravenously hungry for all there is to say and passionate for my people: the ones who live for words.
But now, it's my new bedtime. Somebody with four legs just ran across my roof. The moon is gibbous and waxing. I'm going to bed without a book. Maybe.

I feel fabulous (Really! I Do!!)

Today I want to write about feeling great.
I’d much rather feel great than this low-grade shitty.
Feeling great is so much more interesting.
I feel vaguely guilty for feeling lousy.
What right do I have? Everything works. I have all my hair. I haven’t puked in a couple of months. I’m not in the hospital. I can walk. It’s not in my brain. The last battery of tests resulted in some good news and some bad news. Sheesh. It could be worse.
When I feel lousy, my best friend reminds me that I have cancer.
I have permission to feel lousy, like a “get out of jail free” card.
Oh.
Yeah.
But there are women with cancer who don’t whine, who climb mountains, who raise children, who get married.
I want to write about feeling as fabulous as everyone says I look.
When people say, “Wow, you look great…how are you feeling?”
They don’t want to hear “I feel like shit.” Where’s my proof?
My hair never looked better.
I’ll say “I feel like a million bucks!!!” with three exclamation points. Who will believe otherwise?
I’ll add, “I’ve never felt better!!!” And they’ll know what I mean and shake their head in wonder that a woman full of cancer can feel (and LOOK) so good.
My mom used to say that splashing my face with cold water would change everything.
Whew. Cancer isn’t so bad after all.
Maybe I’ll get a full-time job. I’ll write a novel. I’ll adopt a baby from China.
I read somewhere that metastatic breast cancer isn’t fatal anymore. It’s a “manageable chronic illness.”
But according to Dr. Susan Love’s Breast Book, the average survival of women with metastatic breast cancer (from the time of first appearance) is between two and three and a half years, according to most studies. But 25 to 35 percent live five years and 10 percent live more than 10 years. There are the exceptional cases that live beyond that, but they are the ones whose metastases have only spread to the bones, not the organs, like lungs or liver.
I was diagnosed a year and a half ago, when I finally responded to a large mass in my left breast and within two weeks we discovered that the cancer had already spread to my liver, my lungs and my bones (spine, arms, legs, ribs, pelvis, skull). How much time does that leave me?
When I’m feeling good (the days I put a blue star on the calendar to remind myself there are such days), I court the possibility of 10 years, why not 20? I’ll outlive the people who are taking care of me now. I’ll have time to pay off my credit cards. Maybe I’ll get a masters degree. I’ll be invited to speak at all of the breast cancer benefits.
When I feel like I do today, a year and a half more looks like mercy. What a relief! Imagine how much I can get done in such a short time. I’ll sign up for a couple more credit cards. I’ll organize my posthumous works. I’ll let my hair grow long.

Coming Soon: Broccoli Sprouts

Every book written to advise friends and family how to best help their cancer-afflicted loved one strongly suggests that it is most respectful to not offer medical advice unless it is asked for. That's why it is mostly the grossly uniformed...and those who don't read those kinds of books who call, email and interrupt conversation to suggest all manner of surefire cures for my kind of cancer (which is exactly the same cancer their sister, cousin, best friend's boss (fill in the blank) had and was miraculously cured of).
So why does my long-time dear friend, who is sensitive in every way imaginable, refuse to stop talking to me about the healing powers of eating broccoli sprouts daily? Even at the risk of straining our relationship? Even though I have asked her repeatedly to not bring it up again?

Stay tuned.

Humor Rhymes with Tumor

There were several of us women, around the same age, hanging around the place where we all volunteer. One woman, down on her knees unpacking boxes of books, wanted to know if I had thought about my retirement. What was I going to do when I couldn't work and had to live on Social Security and probably couldn't afford to live in Santa Cruz?
I took a deep breath and passed up the opportunity.
I said, hm, I hadn't really thought about it much...What did she think about it?
It was a rare moment for me, a consummate party pooper. I'm the one who talked about childhood sexual abuse on my first date. I've silenced more than one family Thanksgiving...Easter...Christmas table with conversation starters like nuclear annhialation, U.S. foreign policy in Central America, apartheid. Since I was diagnosed, I have shared the tragic news with just about anyone who ventured anywhere near that territory and even with people who didn't ask.
But this woman wanted to talk about retirement, not the statistics that say I don't have to worry about aging.
So I shut up and thought about Richard.
Richard was a figure skater. When I met him, he was emaciated and could no longer get out of his bed at the hospice where I worked. I met a lot of men in the same straits as Richard over the three and a half years I worked at Rosehedge. It was the first hospice of its kind in Seattle: a six-bed facility for people with AIDS who were knocking on heaven's door. Richard was one of the crankiest of the men I met (and fed and bathed and dressed and tended herpes and kaposi and radiation burns) out of nearly 100 guys who lived and died in that old Victorian house surrounded by rose bushes.
He was mean and he was funny and he had lots of great gossip from the days he skated with Dorothy Hamill and others in the Ice Follies.
One day there was a documentary crew visiting the hospice and they were in Richard's room interviewing him about his religious beliefs about death (Richard was Catholic). In a break from shooting, one of the filmmakers noticed Richard's portable morphine pump and marvelled over it.
"How did you get one of these?" he asked innocently.
"Bend over and I'll show you," Richard replied.
I still laugh when I remember the look on the guy's face.
But I got to where I didn't want to go in Richard's room. He'd told all his Ice Folly stories and the only thing he wanted to talk about was being sick. Sure, it was pretty much the center of his life and it got more and more dramatic with every opportunistic infection that attacked his frail body; more and more compelling with the pain that wracked his days and nights despite the morphine pump.
And he wasn't the only one with a sad story to tell.
Maybe that's why I walked out after the first few sentences of the guest speaker at a recent fundraiser for the local women's cancer organization. She had cancer, but now she was better.
I didn't want to hear about it. The cancer or the better.
Both for different reasons.
I didn't want to hear about the better because it's a lie they've been telling us for too long. Very few women stay better once they've had cancer.
Why didn't I want to hear about the cancer?
(Pull my shirt up and I'll show you.)
Because I already know way more than I ever wanted to know.
Because just about every day someone asks me something about cancer..."my" cancer.
Because there aren't enough good cancer jokes to break this spell.


My favorite cancer joke:
A guy's waiting in his doctor's office and the doctor comes in and says "I have some bad news and then I have some really bad news....which do you want first?"
The guy says, "Sheesh...okay, the really bad news."
The doctor says "You have incurable cancer."
Stunned, the guy shakes his head. Then he says, "What's the other news?"
The doctor says, "You have Alzheimer's."
The guy sighs and says, "Well, thank god I don't have cancer."

That reminds me.
One of the funniest and most right on books I've read about living cranky and lively with metastatic breast cancer is called "Cancer Made Me A Shallower Person: A Memoir in Comics" by Miriam Engelberg. She's brilliant and savagely honest, and she has saved women with cancer from death by a more painful foe: sincerity.

Shot Thru With Light

I was walking into the setting sun this afternoon, the ocean on one side of me, car after car after car on the other side. I couldn't see the people walking towards me, so I had no social obligations to acknowledge them, leaving me free to ponder as much as dodging dog shit would allow.
It's getting harder and harder to ponder on West Cliff Drive, what with safety concerns...bikes, poop, dead fish, spacey people pondering...
The sun was ferocious in the chilly afternoon sky and I was unshakeably certain that I was permeable, light shooting through all the various and increasing number of holes in my bones. I stopped, pissing off a cyclist for good reason, and savored the vision.
If I was a painter, I would paint that one with lots of bloody red and deep yellows and oranges coming through the holes in my legs, my pelvis, all up and down my spine, my arms and shoulders and ribs and skull. Maybe with encaustics, y'know where they mix the paint with hot wax and sort of sculpt the paint on the canvas, giving the image fleshiness and heft.
And when the light shines through that.
Wow.
For someone who likes to walk and jump up and down and dance and jerk around for no reason, it is distressing to know that my bones grow more fragile from one CT scan to the next. I think about that movie "Shadowlands" about C.S. Lewis (Anthony Hopkins) and the American woman (Debra Winger) he fell in love with and how one day she's just walking around the kitchen and her leg breaks.
Snap.
Crash.
It's a great movie, partly because she dies such a tragic death (they'd just fallen in love) by bone cancer. And it makes Tony Hopkins realize just how much he loved her.
It didn't start in my bones, but in my breast, and it's taken to my bones like a tick to moist dark skin. I have lytic lesions, which are the ones where the cancer thins the bone, leaving them at risk of breaking out of the blue. Especially with bouncing. Or picking up heavy things. Or sometimes for no apparent reason.
It seems that along with the erosion of the bone, there can be nerves and muscles involved, all those things being so close together like. This intimate sharing of space and blood and sensations and naughty cancer cells can bring on the pain like a surprise birthday party that only people you don't really like come to. For instance, I often have the feeling that my ribs have been shattered by a two-by-four.
Halleluiah for the humble poppy. I know I complain about the irritating and embarrassing side effects of opium derivatives (constipation, nausea, anxiety, anorexia, itching, depression, nodding off as the arc of narrative makes it's most graceful turns in books and movies. Oh and farting.
But I don't even want to imagine what my life would be like without opiates. I remember when my grandmother was dying of cancer. It started in her breast and within five years it was all over and finally in her brain.
In those days...the early '70s...they were real worried about dying middle-aged women becoming dope fiends and so the only time she got pain medication was when she screamed for help. And my dear introspective, shy grandmother who I remember as being someone I had to get really close to in order to hear her, became a screamer. I was ten and we visited her in the nursing home every night for months.
There should be a parade for all the people who dedicated their lives to getting as much pain medication necessary to the people who sorely need it for as long as they need it without making them feel guilty or weak or fiendish about it.
I'm grateful I can save my screaming for other opportunities.

Piss Off Post

I ran into a former co-worker yesterday. God, it was good to see him. I miss work something fierce much of the time. I mostly miss hanging out with writers all day, being smartasses. He, one of the most proficient smartasses I know asked me what I was doing with my time. I said, Oh, you know, having cancer, reading books, hanging out, going to doctor's appointments. And, I said a bit sheepishly, I started a blog.
He laughed and said, "You must be the last person to start a blog...what are you writing about? What Dick Cheney said today?" I said, "No...(Asshole)." He said, "What? About having cancer? There must be a few blogs about that out there by now." I muttered something about how I didn't really know what I was doing yet, had just started it a few days ago, didn't really care if anyone read it, just needed to be making something happen. He laid off. I carried on with grinding my teeth.
Today I did a search for cancer blogs. I knew before I opened this blog that there was plenty of this out there and I admit to having illusions of writing something so different about my experience with cancer that it has no compare with the other blogs by people with cancer.
I will not only be the exceptional experience, I will be the most outstanding author of cancer lit ever to hit blogspot. People, with and without cancer, will stay up into the night waiting for my next post. In my hands, cancer writing will encompass the whole human experience in the way that Camus' "The Plague," spoke not only of festering lymph nodes and bloated rats, but of love, death, friendship, swimming and war.
And where will the energy come from for this life -defining piece of work if I have to take a three hour nap every day as well as keeping my house clean, doing laundry, feeding myself, going to the movies, reading books and contemplating my next bout of chemo?
Where will the scalding syntax, the vivid vocabulary, the cliche-splitting chapters, the genre-busting narrative arc come from when I can't remember what I did yesterday, when my ears are ringing so loud I can't even hear myself think, when I sit for ten minutes tapping my fingers waiting for a single simple noun to come to me?
Here's how:
A lava flow burning its way to my fingers will illuminate every thing that stands in its way. All that left over radiation and throat burning chemo will lead me to the truth. Adverse drug reactions, pain and constipation will keep me up into the dark fertile hours of the early morning. Irritation is my cloud by day, my pillar of fire by night.
Piss and fury are my guides.

Poem of the Day

The Buddha in the Glory
by Rainer Maria Rilke

Center of centers, of all seeds the germ,
O almond self-enclosed and growing sweeter,
from here clear to the starry swarms
your fruit's flesh grows. I greet you.

Lo, you feel how nothing more depends
on you; into infinity your shell
waxes; there the strong sap works and fills you.
And from beyond a gloriole descends.

to help, for high above your head your suns,
full and fulgurating, turn.
And yet, already in you is begun
something which longer than the suns shall burn.

Venus in a Nursing Home

One of the benefits of having worked at the local newspaper is that I am welcome at the regular press screenings of upcoming films at the arthouse theater. It had been awhile and today my friend Annie invited me to come see the new Peter O'Toole flick, "Venus."
First, let me say. Oh My God. How is it that Peter O'Toole can still be gorgeous at, what is he?, eighty-something? His wild life is written all over his agile face, his long luxurious limbs are still limber and steady in slapstick, and his voice is steady and sexy.
But if it wasn't Peter O'Toole sliding his hand down the shoulder and around the breast of Venus, his best friend's country-raised niece, who is maybe all of 17--if it was, say, my eighty-something uncle, I would have walked out of the theater. The baby boomers are getter older and this is a classic old man fantasy flick. I was creeped out.
And I liked it.
Okay, I love Peter O'Toole, who in this film is married to Lynn Redgrave who he abandoned with three children under six many years before. He takes Venus off his best friend, Ian's hands. Ian asks, "What is it that a man your age can do with a girl like her?" O'Toole says, "It's very difficult. I'm nice to her."And we watch Venus, an angry teen who's been kicked out her home after a forced abortion, slowly and sometimes violently unfold under O'Toole's gaze. And sometimes, touch.
That's all I'm going to tell you except that I was many times moved. I laughed a lot. One of the best scenes is Ian and O'Toole waltzing together. It's a beautiful movie about old age, love and death. And Venus rises whole from it all.

Poem of the Day

Wet Pajamas On a Rainy Night

I dreamt it was blood,
the adhesive sticking my pajamas to my slick skin.
Rain drummed late into the darkness,
first tapping lightly on the window so at first I thought it was possums trying to steal my bike again, raccoons looking for a handout, the egret resident of the local drainage bumming an umbrella.
The wall heater cranked up high,
I tried to dry off evidence of my late night dog paddle across the bay, finally giving up to a dry set of flannel before stepping back into the swell,
thick with kelp, smelling just like blood.

Cats in the Machine

It's about every three months that the doctor wants to see what the cancer is doing. He just can't resist the lure of technology, the clicking machines, the brightly colored scans, the heated phone calls with the radiologist. It's what he does.
He's an oncologist.
Today is my CT scan, also known as a cat scan. My father, my brother, my lover: none of them can resist a joke about cats and claws and purring and whatever.
It's a man thing.
Last night I started at nightfall with the first glass of barium sulfate suspension (2.1%w/v,2.0%w/w). It's like drinking a glass of someone else's spit. Then another glass at daybreak, another before leaving for the clinic, two more after checking in. I did better this time than the last one in October. I drank it all without once gagging.
Today there was even more excitement, a countywide power outage. The receptionist said I could reschedule my appointment. AND START THE SPITTLE DIET AGAIN?
No way.
Me and George sat it out, which sounds noble, but it wasn't because the power came on within about 20 minutes. Ten minutes later I was prone on the bench that slides into the whirling techno-donut, the nurse telling me she was just learning how to do the intraveneous thing with the iodine. They all leave the room and the machine says:
"Take a deep breath and hold it," and then "Breathe."
Then it's all over, except for the barium and iodine hitting my intestines like a marching band.
This is where the hard part starts: waiting. What did the cat see? Has the cancer grown? Has it miraculously disappeared? What does that mean? Should I go buy a cane? Some new hats? A burial plan?
Okay. What it means is that I have cancer.
One more time, almost just like the first time, I go through the grief, just as surprising as before:
Tears and snot out one end, barium suspension out the other.
I've told George that if I'm going to do chemo again, I'll need to go to Hawaii first.
Or we'll just go to Hawaii and fuck the chemo.

Snake in the Grass

You just never know.
I've never noticed a snake until the very last minute, until I'm pretty much on top of it.
Then there's the adrenelin rushing to all of the senses and suddenly everything is big and bright and loud and alive. That's why I used to like horror movies. And why I used to take a regular spin on the Giant Dipper roller coaster.

It was like that when the surgeon put on his serious face and said it was bad. Real bad. It was all over the place and it wasn't going away. He said a lot of other things but adrenelin did funny things to language and I heard single words, like chemotherapy and nipple, like stage four and lobular.
But none of them would string together in sentences. I got the general idea. I had cancer and it was bad. Real bad all of a sudden and I didn't really notice it until I was pretty much on top of it.

The adrenelin flow slows down pretty quick and then everything that was big and bright and loud and alive settles down into complete sentences. But there's the lingering slime of the stuff and still the sentences won't coalesce into paragraphs.
The questions don't lead to the answers.

It's more than a year now since that first adrenelin rush and since then there has been one after another...oops, now it's in my uterus, now it's in my bladder, now it's in my intestines... so that I am now always looking for the snake before I get to it.

Can I slip by this time without waking it up? Is it going to be poisonous this time? Is that any reason to kill it? Isn't it just another snake in a world of snakes? Isn't it beautiful in it's own right?