Jury Duty

I was too upset to write about this the day it happened, but (like many things) a little distance has made it sting less.

I was called for federal jury duty way back in March. I really don't mind serving on juries; it isn't always fun, but I find it interesting. (Truthfully, the last time I served it was depressing, because the defendant was so obviously guilty - he basically admitted it - but we couldn't convict because the prosocutor did such a lousy job. It was sad.) This time promised to be even more interesting because it was a federal case.

However, between then and now, I recieved the diagnosis that prompted me to start this blog again. And I didn't start chemo when I had expected to, which meant that I was going to be in treatment when I had to go to court. I started checking the jury website every evening, as instructed, to see if I had to serve the next day. My thinking was that there was really no reason to call them and explain the situation unless I was being called. And I got through the first week (in this city federal jury duty means two weeks of checking in daily) without being called.

The jury website doesn't post jury lists until 5 pm on the night of the weekday previous to the one when you are called. It was thus that I found out on Friday evening that I was expected to show up on Tuesday, my third day of chemo. Therefore, at 8:30 in the morning on Tuesday, I called the number for the jury clerk to tell her my story and find out what to do next.

I expected to be asked for a letter from my doctor, or even from the hospital. But this is what I got from them:
me: I have a medical excuse, and I need to know what you need to have in the letter from my doctor.
woman: What's wrong with you?
me: Um, I am in treatment for cancer. In my brain.
woman: You're going to need a letter from your doctor outlining the nature of your problem.
me: Like, what I can or cannot do?
woman, snickering: If you really are that sick, they'll know what to say. I don't need to tell them what to say!
me: (nothing, I was too shocked)

Let me just broadcast this loud and clear to all you people who think that it is fun to pretend you have a life-threatening illness (and yes, I am including you, Mr. 1990 MBTA passenger who scolded me for lying after you pestered me for so long about my baldness that I finally told you the truth):

IF I WANTED TO PRETEND THAT I WAS SOMEONE OTHER THAN WHO I AM, I WOULD NOT PRETEND TO BE A PERSON WITH BRAIN CANCER. I WOULD PRETEND TO BE XENA, WARRIOR PRINCESS.

Pigs

I have a sort of fascination with pigs. This is not an invitation for lots of little piggie trinkets, but they are kind of fabulous. First of all, they're outrageously strong. And apparently they're quite intelligent. (Not as intelligent of goats, of course, but we can talk about goats another day.) But I think the real reason I like them is their representation in art.

Note, for example, Kohler's Pig by Michael Sowa (above). Does this pig not look as if he is having the best time? And my favorite of the Sowa pigs is Pig In Soup, who has obviously been splashing around. You can find it here.

I have found a number of Sowa-type images in the non-art world, too, which always amuse me. The Pig Olympics, for example, are always a good source of amusement. God knows I can use amusement right now.

I have a plush pig that was given to me when I had mono in high school. I don't know what it is about this pig - it may be just that his ears are exactly the right length for me to whirl him around by one of them. (A better fate for a stuffed animal than for Him and Her, LBJ's martyred beagles, though one of my college housemates thought I treated him terribly.) For better or worse, this pig has outlasted numerous friendships, roomates, and romances. He has supported my cheek when I didn't have a pillow, dried my tears when my heart was broken, and monitored my research when I was in school. He is a little dingier now than when I got him. But then, so am I.

The Thing About Anti-Emetics

is that they make you really really drowsy...

Phacochoerine

I have now completed one (1) dose of chemo. Four more to go this month. And tomorrow I am supposed to serve on a federal jury. I cannot imagine that anyone will have a better reason than I do for skipping my civic duty. (Actually, I always sort of enjoy jury duty - I feel so Democratic!)

There are a number of things about this drug that I conveniently forgot since the last time I took it. For one thing, when it is actually in my system (for about 8-10 hours after I ingest it) my mind whirls. It does not even seem like it is my mind. I have long dream conversations full of disquieting import and peppered with words I DO NOT KNOW. Last night I said urgently to someone at an airport, "triangulate raptorial contradistinctions for declination of jabberwocky phacochoerine!" or some such thing. I had to look up "phacocherine" - it means relating to warthogs. How did that word get into my unconscious?!

The other thing I forgot is that I am always thirsty when I take this drug. Always. When I am not actively pouring liquid down my throat, I am thirsty. The second I put down the glass, thirsty. Parched. Dehydrated. Electrolytically starved. So I am always drinking and - I bet you saw this one coming - I have to pee a commensurate number of times. So even if I wasn't having somebody else's dreams (that's all that I can think of; they sure aren't mine) and feeling very anxious because I don't understand myself and there is great urgency about everything in these dreams I STILL wouldn't be able to sleep because I have to spend half the night in the bathroom.

Four more days. Twenty percent down for this month.

(Is that right? I'm terrible at percentages.)

Parsing Plus

Today has been the kind of painful journey from dawn to dusk that cannot be ended in prose. Unfortunately, I have no poetry in me tonight - or rather, I am full up on pinching poems but cannot write them.

Sometimes when I am most in need of unfathomable words I cannot find them, or they come with mockeries of their depth. I wrote this a few years ago to answer a question of meaning. It didn't help me understand, but I like what happened when it got hold of me.

[Please note that this piece was formatted in a significant way, and I couldn't bring that aspect of it into Blogger without tearing my hair out. Not that I didn't try. The Mighty Mr. Husband may bring his web skills to this page, but until then, it is what it is. Deal with it.]

Parsing
This piece borrows liberally from N. Shange, A. Rich, W. Shakespeare, S. Beckett, W.B. Yeats, E. Hoffman, L. Hughes, A. Ginsberg, T.S. Eliot, and The Lone Ranger – at least.

How does a poem mean?
Is it a wasteland?
Lost in translation?

How does a poem dream?
Is it is it is it a dream?
Does a poem sing?

If music be the food of love
And poetry the drink
Do we sink
Diving into the wreck?

Sing her a song of possibilities
She’s half-notes scattered
the little engine that could, could, could

If we can dance to that in the widening gyre
(if we can can-can, even)
that
that poem that dream that mountain that ocean that road

and if all the colors in us can conjure god

How do I wait for god
ot?
(We always find something, eh, to give us the impression we exist)

How! How, kemosabe! Howl!
“How” is in charge of what is common
What is living What is dead
what turns
colors
what moves
with a whip-whistle-whimper
or a chitty-chitty bang bang

that twining alphabet
I think grown out of my roots
my hair going gray

my mama, my gramma, my great gramma
Emily Rey
who unknowing gave me her name

And if that vine bore grapes
And if those grapes made wine
And if we drank that wine

would we fall down drunk
from meaning?

Checklist for Chemo

1.
Q. Do you have the medication?
A. Yes, I have the medication, and I know that nobody but me should touch it, since I will be exposed to it anyway, and that I should wash my hands THOROUGHLY after touching it.

2.
Q. Do you have the anti-emetics, and do you understand how to take them?
A. I do have them, and although I have not yet read the package insert, I will before I take one.

3.
Q. Do you have time set aside for the first dose?
A. I do. I thought we were going to go for a drive in the country tomorrow (I love that phrase, it's so Victorian!) but Mr. Husband is sick with something between cold and flu, so it looks like we are staying home. I do have federal jury duty on Tuesday morning, but the plan is to go in and tell them that I cannot come because of my new diagnosis. I cannot imagine that they will want me to stay.

4.
Q. So...
A. Yes?

5.
Q. Why haven't you started yet?
A. Oh.
Do I really have to?

Feminism Defined

I like this tomatonation essay because when I was in college, the message I got was that I was a bad feminist. I liked men. I even slept with them. I wore nail polish and ate processed foods and read Cosmo. I also loved Luce Irigaray and Audrey Lorde, but I was told by a campus womyn's leader that I should give my ticket to see Adrienne Rich to a "real feminist". I'm glad to this day that I didn't. And while I don't agree with every word of it, this essay feels truer than that.

Yes, You Are.

So much for the dress code.

feminism n (1895) 1 : the theory of the political, economic, and social equality of the sexes 2 : organized activity on behalf of women's rights and interests -- feminist n or adj -- feministic adj

Above, the dictionary definition of feminism -- the entire dictionary definition of feminism. It is quite straightforward and concise. If you believe in, support, look fondly on, hope for, and/or work towards equality of the sexes, you are a feminist.

Yes, you are.

The definition of feminism does not ask for two forms of photo ID. It does not care what you look like. It does not care what color skin you have, or whether that skin is clear, or how much you weigh, or what you do with your hair. You can bite your nails, or you can get them done once a week. You can spend two hours on your makeup, or five minutes, or the time it takes to find a Chapstick without any lint sticking to it. You can rock a cord mini, or khakis, or a sari, and you can layer all three. The definition of feminism does not include a mandatory leg-hair check; wax on, wax off, whatever you want. If you believe in, support, look fondly on, hope for, and/or work towards equality of the sexes, you are a feminist.

Yes, you are.

The definition of feminism does not mention a membership fee or a graduated tax or "…unless you got your phone turned off by mistake." Rockefellers, the homeless, bad credit, no credit, no problem. If you believe in, support, look fondly on, hope for, and/or work towards equality of the sexes, you are a feminist.

Yes, you are.

The definition of feminism does not require a diploma or other proof of graduation. It is not reserved for those who teach women's studies classes, or to those who majored in women's studies, or to those who graduated from college, or to those who graduated from high school, or to those who graduated from Brownie to Girl Scout. It doesn't care if you went to Princeton or the school of hard knocks. You can have a PhD, or a GED, or a degree in mixology, or a library card, or all of the above, or none of the above. You don't have to write a twenty-page paper on Valerie Solanas's use of satire in The S.C.U.M. Manifesto, and if you do write it, you don't have to get better than a C-plus on it. You can really believe math is hard, or you can teach math. You don't have to take a test to get in. You don't have to speak English. If you believe in, support, look fondly on, hope for, and/or work towards equality of the sexes, you are a feminist.

Yes, you are.

The definition of feminism is not an insurance policy; it doesn't exclude anyone based on age. It doesn't have a "you must be this tall to ride the ride" sign on it anywhere. It doesn't specify how you get from place to place, so whether you use or a walker or a stroller or a skateboard or a carpool, if you believe in, support, look fondly on, hope for, and/or work towards equality of the sexes, you are a feminist.

Yes, you are. Gloria, schmoria.

The definition of feminism does not tell you how to vote or what to think. You can vote Republican or Libertarian or Socialist or "I like that guy's hair." You can bag voting entirely. You can believe whatever you like about child-care subsidies, drafting women, fiscal accountability, Anita Hill, environmental law, property taxes, Ann Coulter, interventionist politics, soft money, gay marriage, tort reform, decriminalization of marijuana, gun control, affirmative action, and why that pothole at the end of the street still isn't fixed. You can exist wherever on the choice continuum you feel comfortable. You can feel ambivalent about Hillary Clinton. You can like the ERA in theory, but dread getting drafted in practice. The definition does not stipulate any of that. The definition does not stipulate anything at all, except itself. If you believe in, support, look fondly on, hope for, and/or work towards equality of the sexes, you are a feminist.

Yes, you are.

The definition of feminism does not judge your lifestyle. You like girls, you like boys, doesn't matter. You eat meat, you don't eat meat, you don't eat meat or dairy, you don't eat fast food, doesn't matter. You can get married, and you can change your name or keep the one your parents gave you, doesn't matter. You can have kids, you can stay home with them or not, you can hate kids, doesn't matter. You can stay a virgin or you can boink everyone in sight, doesn't matter. It's not in the definition. If you believe in, support, look fondly on, hope for, and/or work towards equality of the sexes, you are a feminist.

Yes, you are.

Yes. You are. You are a feminist. If you believe in, support, look fondly on, hope for, and/or work towards equality of the sexes, you are a feminist. Period. It's more complicated than that -- of course it is. And yet…it's exactly that simple. It has nothing to do with your sexual preference or your sense of humor or your fashion sense or your charitable donations, or what pronouns you use in official correspondence, or whether you think Andrea Dworkin is full of crap, or how often you read Bust or Ms. -- or, actually, whether you've got a vagina. In the end, it's not about that. It is about political, economic, and social equality of the sexes, and it is about claiming that definition on its own terms, instead of qualifying it because you don't want anyone to think that you don't shave your pits. It is about saying that you are a feminist and just letting the statement sit there, instead of feeling a compulsion to modify it immediately with "but not, you know, that kind of feminist" because you don't want to come off all Angry Girl. It is about understanding that liking Oprah and Chanel doesn't make you a "bad" feminist -- that only "liking" the wage gap makes you a "bad" feminist, because "bad" does not enter into the definition of feminism. It is about knowing that, if folks can't grab a dictionary and see for themselves that the entry for "feminism" doesn't say anything about hating men or chick flicks or any of that crap, it's their problem.

It is about knowing that a woman is the equal of a man in art, at work, and under the law, whether you say it out loud or not -- but for God's sake start saying it out loud already. You are a feminist.

I am a feminist too. Look it up.

Various Oblongatas

**Warning: this post contains non-graphic references to vomiting. But if you are as emetiphobic as I used to be, you may want to skip it.**

Today I learned that the source of nausea and vomiting in reaction to chemotherapy is in the medulla oblongata. This process even has its own name: Chemotherapy-Induced Nausea and Vomiting, CINV for short. As a bodily rejection of toxins, it makes sense, as many bodily functions do (yes, even what you did with That Guy in 1987) but unfortunately doesn't help in the long run. (The comparison stands, incidentally.) So we decided to move my medulla oblongata to my knee by using hypnosis. Now, when the nausea is triggered, my knee will itch and I will do self-hypnosis to control it.

We are going to call it the patella oblongata.

On a more serious note... My anti-emetics arrived this morning. The chemo drugs will arrive at the office tomorrow. Our anniversary is this weekend, and when we return from a very mellow day in the country on Sunday I'll start the first course. My Memorial Day will be a memorial to all who have been through this.

Heroes and Kickball

We had dinner this evening at a Thai restaurant near our office. (My chemo has yet to start, which annoys me, but it has some advantages, including that I still have an appetite.) This place is on the second floor of a building overlooking a busy street, and they have a patio outside which looks down on the people bustling (or dragging) home from work. It was a beautiful night - unusually for this city of extremes, it was warm but not hot, cool but not cold, breezy but not windy.

From our perch above the world we saw two of our colleagues walk past on their way to the bus (we called to the first one but she didn't hear us, so we didn't repeat the experiment) and several members of at least two kickball leagues.

[Aside about kickball - these people take their kickball seriously. The league with a national presence and chapters everywhere has apparently bought the other one's alternate website address, (their name).com, making them CYBERSQUATTERS. Also they do not sponsor parties that are as good as the other one because they only spend $15 per player. And annoyingly, they sling no mud on their website, which makes for very boring reading. Yet you do get the feeling that they are about as slick as a snake oil salesman.]

From our aerie I could see (it was behind Mr. Husband) an interesting interaction between two dogs. The first one was a white dog about the size of a collie and seemed like a puppy - ebullient and large pawed. The second was mostly black and about the size of a Jack Russell terrier. I saw the first one first, which I guess is obvious, but because of that I didn't understand its behavior. It stopped walking, let its person walk by it, and laid down on the ground on its tummy. Meanwhile the black dog walked the rest of the block to the white one, and sort of nuzzled it, as if it was saying, "what's the matter with you? Get up!" And the white dog jumped up and I swear, it danced with joy.

Last weekend I went to another city for a celebration for some people who had a huge impact on the movement in which I work. These were ground breakers, law defiers, persons of enormous integrity - and my heroes. The man who was being most honored has been an inspiration to me ever since I have known of him. He is now an old man, and after I was introduced to him he kissed me and thanked me for my work. HE thanked ME. He thanked me. And I almost danced with joy myself.

Mooncussing

This venerable practice works as follows. Thanks to The Miniatures Page, though I don't know what they have to do with mooncussing. Oh, and imagine it with an Irish accent; it sounds more authentic that way.

Unlike proper piracy, a mooncusser needs only two things:
1. A lantern or lanterns.
2. A night with poor visibility.

The practice is simple. You rig said lanterns up in such a ways as they resemble the stern and rig lighting of a sailing ship. You do so near a dangerous bit of shoaling—preferably something strong enough to break up a ship quickly, but not so pounding as to break up the cargo.

Unsuspecting ship approaches your lanterns, and given that 2. is true (and if it isn't, you're standing ashore cussing at the moon), unsuspecting ship beaches herself on the shoals, and you salvage the wreck. This is a low, cowardly practice, not proper piracy at all.

It turns out it's almost legal, too. Now, suppose you own a bit of shoreline. That which washes up upon your shores is yours by right of salvage. It's the practice of hanging lamps in trees that's illegal. Maybe. Certainly it's a hard crime to prove, unless you're caught red-handed, but moreover, the erstwhile mooncusser can always claim that the Admiralty (or Navy, or Federal) Court has no standing over him. I have been led to believe the issue has not been resolved legally. So if you manage to get your case moved to the County, and the County has no law against mooncussing (sometimes called Fraudulent Aids to Navigation or Intent to Disrupt Free Passage), then you could get off free.

That doesn't change that you, Mr. (or Ms.) Mooncusser, are the lowest, most wretched form of pirate.

Not that I'm planning any mooncussing.

Theater(s)

Suzan-Lori Parks, who is formidable playwright, started writing a play a day in November 2002, and stopped in November 2003. The resulting 365 plays were published in 2006, and are being performed this year by companies large and small throughout the country. In my city, it is the Studio Theater that is doing a majority of the work, but smaller companies are also involved, and tonight we went to see the plays from the third week of May at one of our neighborhood theaters. You can read each play on the corresponding day here. It was quite wonderful.

(And how amazing is that, that we have neighborhood theaterS. There are at least three within easy walking distance!)

My play for today would be better than a play I might write for May 14. (Scroll down to the very last - or first, I guess - post.) But I am still frustrated that even though I sent in my information to the hospital Monday, the drugs for my chemo were ordered from the pharmacy on Thursday instead of Tuesday, and that the outcome is that I will not have them until this Thursday at the earliest. What comes to mind are the famous Macbethian words, "If it were done when 'tis done, then 'twere well/It were done quickly" but those are about an assassination, so maybe I don't want to go there.

The upshot is that I am not a patient person. I've heard that patience is an acquired trait, and that it gets easier as one ages. But truthfully, it is my sense of urgency that has increased. Come on, folks! I've got places to go and people to see!

Ol' Blue Eyes

One of the things that is nicest about this last diagnosis, if that makes any sense, is that everything is still in place from the previous time. I haven't had to educate anyone or start at the beginning looking for good people to take care of me - they are already there. My primary care provider is a PA who works out of a physician's office. I'm going to call him Esmond, which means grace and protection, out of deference to his dog and his personality. Esmond is "in" whatever I go through, right there with me.

The technician who took my blood every week when I was in treatment last time has become a friend. He's from southern state and you can hear the molasses in his words. Just in the last year or so, all the techs in the office have started wearing scrubs, and his are dark blue - thus the title of this post, which is my new nickname for him. I have to say, nobody ever wore scrubs to more advantage. His eyes just burn blue when he's wearing them. Ooh la la!

When I went to see Ol' Blue Eyes for my first blood draw after the new diagnosis, he offered to take my blood at my home if I didn't think I could make it to their office. He said he'd just bring the supplies he needed and make a house call. And it was this, after I'd been teetering on the edge of tears all afternoon, that made me break down. I think we both know that I can make it there weekly and that a house call will not be necessary. But here was a man with a skill that he knew I needed, and he was offering to make it easier for me to get it.

After my initial diagnosis in 1989, I signed out of the hospital AMA (Against Medical Advice) and forced my family to take me home. I was a mess and on some serious drugs, so I don't remember the toilet clogging up, but apparently it was unusable. My mother called our plumber, who was intimate with our old pipes. He and my mother had been through a great deal together, including the time that he dug up our entire yard at great expense, looking for a pipe that proved to be irrelevant to the project in progress. He was distracted, because his son was dying of cancer at the time. They ended up splitting the cost of the excavation.

After he had snaked the toilet that evening in 1989, he asked what was going on. My mother told him that I had just come home from the hospital. He said that he hoped it wasn't very bad news, and she told him that it was, indeed, very bad news. He said that he hoped it wasn't cancer, and she told him that it actually was cancer. (I cannot even imagine how hard this conversation must have been for her.) Apparently his eyes filled with tears, and he handed her the professional-grade plumber's snake. It was what was in his hands and what he knew how to do. "Here," he said, "you might need this."

What is devotion if not that spontaneous impulse to do what you do best for another person? Is there any better, any more heartfelt gift?

Mom

Overheard on the train tonight:

"We need some beer, okay? The party is BYOB. (pause) All you need to do is get me two forties, dude. (pause) What do you mean, we'll see, that's lame! (pause) Okay, can I at least take my bike to the store when I get home? (pause) Aww, Mom! That's so unfair!"

Doesn't sound like any moms I know...

Hard Times

My father had an arrhythmia. His heart worked fine - better than fine - but it had an electrical problem. He died of heart failure, which is pretty much what we all die of, when he was in his very early sixties. Which is young, these days.

My father and James Thurber will always be linked in my mind. I found out recently that Thurber died before I was born, which shocked me. His writing and his cartoons felt so real to me, so current. When I went away to college my father gave me a copy of My Life and Hard Times, Thurber's slender and brilliant autobiography. It was, he said, the closest thing his family had to a Bible.

As a result, many of the ties that bound me to my father were made out of Thurber's stories. When there was no comfort between us, I persisted in giving him Thurber-evoked artwork, and tee shirts, and neckties. Eventually we were able to fall (or leap) into a relationship of our own, but we could always go back to Thurber. We got him in exactly the same way - with a wry and slightly embarrassed sense of humor about the essential ridiculous-ness of our people, be they family, classmates, or dogs.

I'm tempted to quote one of Thurber's adages here; I am particularly fond of the one that says "humor is emotional chaos remembered in tranquility." But what I really mean by evoking Thurber is only captured in his memories of his youth. And certainly it would have been meaningful to my father, whom, I just realized, I have memorialized here, to give you this link to The Night The Bed Fell.

Unfortunately, not only does this web-based version not have the shaken doors, thrown furniture, and barking dogs that Thurber suggests, but it has only one of the pictures that Thurber drew to go with the story. (My favorite of these is of Aunt Grace Shoaf, heaving shoes down the hall to frighten off the burglars that got in nightly. "Some nights she threw them all, some nights just a couple of pair.") Still, it is a story that brings me comfort, perhaps because it means that mine is not the only crazy family in the world, and it amuses me to boot.

The Best Gesture of My Brain

Somehow I stumbled upon this poem again today, and rediscovered it for the umpteenth time. I quoted part of it in my last blog but realized today that it is inseparable from itself, so the whole thing is here.

Here is what e.e. cummings is (does?) for me. It is as if everything seems a bit off and the landmarks are familiar but wrong. Everything is there but nothing is where you expect it to be. And then you find that you are holding the map in your mind upside down, but you didn't notice that it was upside down, but now you do, and so you turn it over. And everything slides into its right place. And you say, oh, NOW I see! THAT'S where I went today!

since feeling is first
who pays any attention
to the syntax of things
will never wholly kiss you;

wholly to be a fool
while Spring is in the world

my blood approves,
and kisses are a better fate
than wisdom lady i swear by all flowers. Don't cry
- the best gesture of my brain is less than
your eyelids' flutter which says

we are for each other; then
laugh, leaning back in my arms
for life's not a paragraph

And death i think is no parenthesis

- e.e. cummings: Complete Poems 1904-1962

Tinkerbell

Peter Pan and the Lost Boys and the Pirates and the Darling Family were all very much part of my childhood. I think that came to be partly because we had a babysitter who was a rising star in the theater scene, and who taught us all the musical numbers she knew. I remember singing "The Perfect Nanny" from Mary Poppins with her when I was maybe 7 or 8. I played Jane, and my babysitter played Michael, and knelt on her shoes for our performance. She also taught me how to make chocolate mousse one glorious night that I got to sleep at her house IN A SLEEPING BAG. Greater wonders no child ever knew.

My sister, when she was maybe 4 or 5, was a huge fan of Sandy Duncan, who was playing the title role in Peter Pan in those days. (Post-Mary Martin, pre-Cathy Rigby.) She (my sister) even wrote to the production company and got a signed photograph of Duncan. I just about swooned with jealousy - not of the photograph, but of the chutzpah to write to the production company. We saw the show, I don't remember if in New York or Boston, and it was magical.

Last weekend, before the hospital trip that threw me into a tailspin, we saw the Mabou Mines production of Peter and Wendy. (It is a phenomenal piece of performance, by the way; see it at Arena Stage if you get a chance.) If you know the story, you know that Tinkerbell drinks the poison that Hook has left for Peter in place of his medicine. Peter doesn't believe her when she tells him what Hook has done, and laughs at her. So, before he can drink the medicine, Tinkerbell throws it down her own throat in a headlong protective rush. Tinkerbell is often represented as a small light on stage, and after she drinks the poison, the light sputters and fades. Peter calls on the audience to keep her alive through their belief in her by clapping their hands. And they do.

We had a child-sized record player (if you are too young to know what a record player is, it is past your bedtime) and a child-sized version of Peter Pan on a record. There was a book that went with it and every time you heard a certain chime "ding!" it was time to turn the page. It had songs, too, and the one that has been circling me for a few days went,

if you believe in fairies

then clap your hands

Tinkerbell

will get well

if you clap your hands

Ever since I wrote the first entry of this blog - in spite of the fact that I am a big woman and not particularly light on my feet, shall we say - I have been feeling a little like Tinkerbell.




(The Rackham-y artwork is by Tina Mansuwan from http://www.ba-reps.com/image/93526.)

And Thank You Again For Your Support

First of all, a change in plans. I am supposed to present at a conference this weekend and I really want to go. I am cancelling my attendance at another conference to which I really wanted to go because it looks (as I calculate it by the calendar) like it will happen during a treatment period, but I am not giving up everything. So I will not start my new/not new chemo treatment until next week.

Second of all, more MedSpeak. Sometimes it is easy for me to forget, because I've been inside it for so long, that not everyone knows the basics of cancer therapies. Here's a crash course, labelled as many patients do. The options are:

• cut: surgery. This is when a surgeon, in my case a neurosurgeon, attempts to remove, or resect, a section of tissue that is malignant.
• poison: chemotherapy. This is when an oncologist, in my case a neuro-oncologist, attempts to destroy malignant tissue with toxic drugs while simultaneously not poisoning the patient.
• burn: radiation therapy. This is when a radiologist attempts to destroy malignant tissue by radiating it with toxic rays while simultaneously not burning the patient.

These therapies have become more sophisticated by leaps and bounds in the last 50 years. It's astounding how much they can do in the hands of a competent and knowlegable oncologist. But except for gene therapy which, in spite of enormous strides recently, is still largely an unknown quantity, there isn't much that is constructive about cancer therapies.

What I will be taking is chemotherapy, specifically a drug called Temodar (the brand name) or Temozolomide (the generic name, and I cut and pasted that, so don't ask me to spell it). Surgery is not a good option, at least until other options have been tried, and radiation is (for me) the backup for chemo. Temodar is a drug I can take orally at home, which is rare for chemo. (Usually you have to go into a hospital or clinic and have the drug dripped in from an IV. ) It's a 30-day cycle, 25 days off the drug and 5 days on it. As I said in a previous post, I'll do two months of treatment and then have more scans to see how the little bugger is doing.

Third of all, thank you for your support. I know that not everyone has this type of encouragement. I feel so lucky that my community - communitIES, really, of work and family and others - have been so kind.

(A prize to the person who recognizes the title line from an old TV ad...)

Status Quo

Thank you! Since I posted the first time I have been inundated by offers of everything from casseroles to pedicures. I couldn't ask for a better support community. What I didn't say before, and should have, is that I feel exactly as well physically as I did yesterday and the day before that. I am still planning to appear on the panel that I was planning to appear on this weekend in NYC, I am still going to run my department at work, and I will still learn everything I need to know about crime from Law & Order. And I will still lie abed while Bill is up being productive on Sunday mornings.

If this round lays me out, it won't be for at least a week or two.

Again Into The Breach

I am going to be fine.

(Last year one of my colleagues was badly hurt while riding her bike. The next morning her fiancé emailed a number of people with the subject line "Amy is going to be okay." It was a lovely and thoughtful way to tell us that she was not okay – but only for the moment. )

There are new lesions in my brain. They are (and I quote from the radiologist’s report) “in the region of the splenium and of the corpus callosum on the left/adjacent subcortical left occipital white matter.” All I can see on the MRI is that it’s deep.

So I did some research, and I found it helpful to use the following visual aids. First, a piece of regular paper folded in half along the long side is slightly larger than a brain. Second, a dime is about the same size as the larger of these tumors. If you put the dime just below the center of the folded paper, and slightly to the left, you’ll be in the general area.

In other words,














The consensus from the doctors is that they want to try the same drug I was on for a year last time. Though I resist putting that horrible stuff into my body again, I admit that it worked. The plan is that I will have my blood drawn today and start taking the drugs again on Wednesday. I’ll have scans after two months and we will reevaluate depending on the results.

It does seem a little like a sick joke that today is the fourth anniversary of the surgery that excised most of the 2003 tumors. I’d hoped I would get more time out of the surgery and chemo combination – I got almost 13 years out of the previous treatment! – but so be it. I am more grateful than I can say for the many years I have survived beyond my original prognosis, and the many years I intend to survive in the future.

Starting tomorrow I will be back at work. I have no reason to think that I will be sicker than I was last time – maybe it won’t even be as bad. I am thankful for your prayers and good wishes.