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.