Rant

I'd like to get off this goddamn roller coaster pretty soon. Yesterday I went and got fluids with Rebecca, thank you for driving me. We schlepped out in the freezer. We drove from the Popsicle shelf to the frozen pea shelf and parked in the ice tray. We remained in the ice cream department most of the day. I was so cold last night that I was walking around wearing a dirty naked ugly down blanket. 

But who cares that doesn't matter. I was feeling pretty pleased as punch with myself for inhaling through a needle several liters of fluid and being able to eat dinner. Yay Amy! I'm awesome! All the hype is true about how wonderful I am! I'm doing it right this time. This time.

But today? I've had it! I'm actually mad! In what I thought was the middle of the night, I was having a dream that some large muscley strapped man, in other words some short square self assured hunky annoying person like Tom Cruise, came up and slapped his big fat meaty hand right on my back at the base of my neck as hard as he could, and then started to squeeze me. He flashed his megatwat smile and gripped me hard, in what he thought was a comradely way. A Scientologically bright and radiant way. And squeezed. And squeezed. Till my breath hurt coming in. 

I realized then that the dream had unraveled and I was once again in that damn state of sort of awake sort of asleep , and not knowing what day it was or what time it was or what continent I was on or what room I was in or what floor I was on or anything. I thought well it must be about 8 o'clock in the morning and the kids have gone to school, or maybe it's Saturday before Christmas. But no it was more like 11 PM. Another long night that had just started. I lay there for an hour or two trying to get comfortable and thinking what is this twinging singing screaming pain!? Did I sleep wrong? Have I been laying down too long and my back and neck are getting scratchy scratchy crotchety old mannishly sore? How dull a diagnosis - I shall not attend to this. Then I realized - it was the Neulasta shot, which makes boiling pain inside a bone. OH YEAH THAT! Oh gee thanks. 

I dreamt about getting up to get some Advil for three seasons before I made myself get up to do it. You know how pathetic it is when you feel so awful that you need medication, but you don't feel well enough to get up and get it? That was how I felt. I hate that me. Another hour or year went by and I realized I needed something stronger, so I shuffled myself up schlep my medicine burro downstairs, made myself eat a snack and then took a big old fat Percocet, the world's best pain pill. These aren't even prescribed to me by my doctor, she has yet to get out the really big guns, but I have my connections. Thank god. Well let's say that did the trick, and knocked me out AFTER A WHILE. But now here this morning, yes 11:15 is tea time morning for me today, me no feel so good. The pain is back and I feel pretty nauseated from the pain medication. WTF.,So I'm back on the merry-go-round of antinausea meds, food, drinks, antinausea meds, pain pills - repeat reuse recycle re-fucking-re-tread. I am just goddamn sick of this right now. I don't need a pep talk, I don't need any reminders that I'm halfway through with this and things will get better. I do know all of this. I'm just in a bad mood right now feel like a scrabbling little roach that's being smashed by the heel of a giant lady who's walking up the stairway to heaven. And she hasn't even noticed me down here. I'm flat and cold and brown and losing. And she's gold and Chanel pantyhosed and she smells good and she's wearing a fantastic Chinese bun. Meanwhile I'm just down here as a nothing bun, a bun of nothing stuffed with nothing. A dim bun. That makes no sense whatsoever and I fucking like that.

Glueless

Do we need a maid? A ride? Dinner dropped off? An errand? Yes yes and yes and we've been getting these things consistently, thank you thank you thank you. 

But still something is missing around here. My being sick is discombobulating us. I think it all comes down to glue. Plain old Elmer's/mother's glue. You see, deep inside of me, I manufacture a sweet honey-like glue that sticks everything else around me together. It is invisible. It is taken for granted. It is unseen. It is very very sticky. Like it or not, I am the queen bee of this hive. And I am the keeper of its secrets, the spinner of its honey, and the one that glues everything else together. When I'm out things unglue.

This morning while Mike valiantly swathed his way through the jungle of getting two teen/tween girls out the door for school I lay up in my bed, pretending to rest. Crash! Bang! Squeal. I could not stop dreamwaking, existing up here in my cube room's fugue-like state where my little girls kept coming upstairs in dresses for me to approve of their outfits for the day. Fiona was a little tiny short kindergartner in a brown gingham flowery dress very short, with little short white ankle socks. This was not true. This was not real but I could not disconnect. If I couldn't be downstairs helping them get ready for school, I had to dream it along with them, painfully. My girls aren't little and don't wear dresses to school anymore, but I could not rest because I kept having this waking dream that I was helping them. Alone, upstairs, in my raft of bed, I followed their every move, connected to them by a long thin sticky filament of mother glue. 

My waking dream within my pain dream was accompanied by crashes and yells and crying when the real children and father could not find the eggs or the homework or the socks or the backpack or the lunchbox or the note or the gloves or the coat or the shoe or the shoelace or the key or the mug or the orange juice. The phone. There are no eggs, I heard, so I guess my goddamn breakfast taco plan has gone to hell.

I have proned around so much in the last two days that my neck hurts. Valium, Marinol and four ibuprofen at 3 o'clock in the morning make for fuzz. My glue is fuzzy. In fact at one point this morning in the wakedream I forgot where I lived. And I dreamt that I dreamt that I was in the bed and Mike was trying to wake me up, and then when I did get up he had a Starbucks set up in our living room and was busily trying to sell a bunch of investment bankers some breakfast. He was trying to sell them on an investment deal, and I walked into the room and ruined it with my sickness. They all hated me. And I tried to imagine the outside of our house, and I couldn't remember if we lived in Colorado or Texas. This is real, and it was not real.

Back to the glue. I am the one that knows. I know things. I know where the gift for Sydney is, and the antique horse that I bought for a little girl that needs to be wrapped up in a tiny little box with a bunch of other small things and shipped. I know where the postcard is from the orthodontist and which person to call there to set up the appointment for one of the three children that I am overseeing as their teeth tectonically move back to a more suitable plate style. I know which brushes are in the freezer and why. I have  little wrapped and half wrapped gifts strewn all over the floor of my bedroom, and they are in a secret pattern that has a very distinct meaning that only I can ascertain. Please do not disturb them or Intercontinental shipping may not occur as it should. 

I am the keeper of the ultimate Christmas list, I know what is been ordered, wrapped, hidden, planned, desired, and shipped. I know Mr. Omelchuck's t-shirt plan and exactly where Fiona is every single day at 3:54 pm, down to the chair. I know who her new friend is, and which 9th grade boy is having problems because of nail polish. I know where the stamps are. I am supposed to rest, unhook, disconnect: not DO. I know too much and nothing at all.

Don't get me wrong. I fully know how important I am. And yet. I know they could get along fine without me if they had to. And Mike is doing a fantastic job of juggling the myriad million things that he's having to do without much help from me. I had a premonition he would fall off the ladder this weekend while putting up Christmas lights, and it came true. He took a step backwards into clean plain thin air, when he thought it was the ground. There were still three steps to go so it was a very hard landing on that leg and it still hurts. Still, it's better than it could have been, and it was not the premonition of him breaking his back that I had envisioned. 

So we are getting along okay, and will continue to do so, but we are a little bit glueless right now. If you come around, watch out for chaos, and little bits of things flying out of the center of our cyclone, and a little bit of yelling and screaming and fussing. We are a little bit undone.

Absurdlandia

Is where I am right now. Dichotomy world. We're getting ready for Christmas and we put up our tree and it's crisp and cold and beautiful outside. I love the smell of the cold crisp coldness. Can I get a bottle of perfume of that for Christmas? That's what I want.

And yet I don't feel myself. My mind is tangled up in pills and visualizations of Martian tides of red annilhating cancer cells with chemical eyes. I don't feel. Myself. I. Don't. Feel myself.

What do/did I take?

One pill makes you larger

And one pill makes you small

And the ones that mother gives you

Don't do anything at all

(Grace Slick)

It's a weird way to go into Christmas. 

To believe in this livin'

Is just a hard way to go

(John Prine)

Hearing sad depressing truth like Prine's words actually comforts me - I don't find it depressing - rather I find it validating to know that each of us has failures of confidence and moments of doubt - why what is all this? It's hard. And wonderful. All.

Christmas. Christ:Mass. The mass of Christ. To us it has always been a time of family and fun and green and red and delicious food and friends and decorations and giving and giving and giving and receiving receiving and receiving and happy laughing warm Joy happy joy Max Annabelle Amy Ray Burnyce Emma Lou Marilyn Val and all the rest. Oyster stew on Christmas Eve. Or Burnyce's homemade macaroni and cheese where you make a roux, then stir in real sharp cheddar cheese. And cubed ham, breadcrumbs and you bake it till it explodes with deliciosity.

The holiday food. Can't fathom eating any of that now, but I look forward to fathoming eating any of that later. Today it's all about sliced bananas, sliced apples, English breakfast tea, apple juice, and one egg. That's kind of depressing for me. But what the hell can I do? Are you getting sick of reading this blog? I am. And yet I ooze it every day. I almost have to, my sister thinks it's my personal journal. I can't stop.

Mostly whatever pills I take don't seem to do anything at all, even though mother didn't give them to me. I wish my mother were here to take care of me right now. She used to fluff up my bed when I was sick, and bring us a tray to bed with magazines, crayons, paper, and always a weird little Maybelline eyeshadow that we could try on. Everything was fresh and clean and sunny and always fluffed up. She was an amazingly excellent nurse. One of the big verbs of my childhood was fluffing up. She fluffed us up. 

I don't think I'm quite as bad as I was on day three of my last cycle of chemotherapy. I'm not ready to brag about it yet. But I think I might be a tiny bit less hellish. Let's hope so.

Listening to Annie Lennox now soaring her voice out over my living room "oh tidings of comfort and joy!" - it's almost enough to convert me Christianity. Beautiful music is so spiritual and as powerful as a weapon - and wielded by a true master it can sway. I love the original ideas. I swoon at Lennox's version of God Rest Ye Merry Gentlemen. A song I never liked much till she sang it. 

O tidings of comfort and joy!
Comfort and joy!
O tidings of comfort and joy!
Comfort and joy!

Or the concept of let heaven and nature sing. Yes! Or the Holly and the Ivy - hearing her sing this reminds me of the original merging of the wonder at nature and blood and beating hearts and death and birth and life and green and the wondering mystery of it all causing mythic stories of wonder: 

The holly and the ivy
When they are both full grown
Of all the trees that are in the wood
The holly bears the crown

Oh, the rising of the sun
And the running of the deer
The playing of the merry organ
Sweet singing in the choir

The holly bears a blossom
As white as lily flower
And Mary bore sweet Jesus Christ
To be our sweet Savior

Oh, the rising of the sun
And the running of the deer
The playing of the merry organ
Sweet singing in the choir

The holly bears a berry
As red as any blood
And Mary bore sweet Jesus Christ
To do poor sinners good

Oh, the rising of the sun
And the running of the deer
The playing of the merry organ
Sweet singing in the choir

The holly bears a prickle
As sharp as any thorn

Is it absurd that I find comfort and joy in sad words and words of comfort and joy? It is so. To me it's all about grace. A very complex but simple concept. Flannery O'Connor wrote exclusively about it. More on that later.

Peace to man on earth. To you.

What a cold and rainy day

I hope you guessed by my title today that I am quoting Natalie Merchant, from one of best songs ever: "Like the Weather" - it's not really about the weather, it's about depression, which fits both the weather and me a bit today, so I shall sprinkle a bit of her in this blog today.

Where on earth is the sun anyway?
The color of the sky as far as I can see is coal gray 
lift my head from the pillow and then fall again
with a shiver in my bones just thinking about the weather
a quiver in my lips as if I might cry

Chemo yesterday in a cold freezing hazy blue room with Motel 6 circa 1982 decorations, no windows, and too many people crammed into the room with its white linoleum floors and overflowing toilet behind door number one two feet from me. Oh well. You tend to notice these things as you get to round three. It was so packed that my guests were invited to leave but then kindly invited back - they had to double book due to Thanksgiving. I overheard lots of stories about people on lifelong chemo. I felt great yesterday wolfing down my tuna sub and chips from Kris and homemade chai latte from Leila and my Japanese crackers from Stephanie.

Well today the toboggan is gathering speed down the black diamond slope of yech but I am more determined than ever not to crash into a tree, and maybe head more into a fluffy bank or maybe just do a quick flip in a mogul (seems spelled wrong) and then pop back up. I went in to the clinic today for fluids just in case and will go in Monday - a big fat schlep to a place I don't want to be but I am trying very hard not to get as sick because it's too awful.

Well by the force of will my lungs are filled and so I breathe
lately this big bed is where I never leave
shiver in my bones just thinking about the weather
quiver in my voice as I cry

At the clinic I met a young man who just his first baby two days ago - a little boy named Wyatt. He wants to get him a Peacemaker gun just like the one Wyatt Earp had those years ago. He wants to buy it as soon as he can. Apparently this gun is a real collector's item now they say and I find this oxy and non oxymoronic (two types of moronic)' This young guy is getting his masters in math and business and plans to teach high school soon. He does not have cancer but instead a rare bone marrow condition where it does not work so he has to come in every week and a half forever to get his magic juice. Or he pees blood and croaks.

I hear the sound of a noon bell chime, I'm far behind
you've put in 'bout half a day while here I lie
with a shiver in my bones just thinking about the weather
a quiver in my lip as if I might cry

You overhear everyone there. A lady behind me is having a new chemo because hers did not work and the cancer is now in her lungs and brain and bones and adrenal glands. I don't know what kind of cancer she has.

Do I need someone
here to scold me or do I need someone
who'll grab and pull me
out of this four poster dull torpor
pulling downward

It is such a long time since my better days
I say my prayers nightly this will pass away

In the late 80s or so my friend Traci Fonville would spontaneously burst into singing this song and she could do it SO WELL - it was amazing. She would just belt out "The color of the sky, as far as I can see...is coal gray. Where on earth is the sun anyway?" She may have been better than Natalie - I was enchanted. I always will remember that. I wish I could sing.

The color of the sky is gray as I can see through the blinds
lift my head from the pillow and then fall again
with a shiver in my bones just thinking about the weather
a quiver in my voice as I cry

But it's not all bad. I am ok. Just dull and witless right now and a bit scared. This does not feel good mentally or physically.

What is this? What is life and what makes it misery or parade-like or sloth or angelfood cake? I think Arundhati Roy captured this essence in the title of her book The God of Small Things. It is the small things. Cancer, this LARGE thing, I think will pass. I get that. Right now CANCER isn't killing me - but countless small things birdy peckin peck things make the moment worse or better. Can't swallow a piece of cauliflower. Can't get warm. Can't find my sleep cap. What to do? 

I was pondering this with my dear friend Nancy S up in sunless cold Michigan with her host of dementors - we all have them. So I was writing to her about small things. 

An edited excerpt about this: 

Small things. Like how a sunny day can make life all better for a while. On your face. Tripping and banging your toe can throw you into a fit. Taking a bite of a deliciously perfectly toasted piece of toast with butter and jelly can be sublime. Having so many things in your hands that you can't unlock your car door can be the last straw. Maybe when times are troubled maybe it's best to look for the small tiny moments of happiness and pleasure. Like when I get a text from you that shows me that you understand me. Or I get to sit alone in the bathroom to pee and read a little bit of the New York Times. Or good song comes on the radio. Or I find a funny cartoon in the newspaper and cut it out. Or watch a stupid video (try Cap'n DesDes conversation #32). Or I send somebody a cute postcard and I spend energy on finding something funny to stick on and then decorating it with fun stickers. Surfing the poetry foundation website. The god of small things. So maybe right now instead of trying to seek a big change in an avalanche of shit, look for the small things that might be good. For the moment. Like a nice friend. A hug with Mike. A warm Fifi foot. Violet is scrambling me an egg. A perfect cup of tea. A pretty picture in a book. A ray of light as it hits the wall in a beautiful way. A distracting horrid magazine. A friend to drive me. My new warm coat. Or taking a bath with your baby - any age. Or brushing her hair. Getting your nails painted. Getting a massage. Or walking outside. Teeny tiny expectations for small things. Laughing at silly things. Slippers. I'm trying. 

Here is another song by Merchant:

JUST CAN'T LAST
I swear I know your face, I wish I knew your name
I wish I could take you by the hand
If I could name it, if I could just explain it
If I could only help you, help you understand

I can see that you're hurting weighed down like a beast of burden
About to break your back God only knows that you're human
So what are they trying to do then believe me, they don't understand

That you have the weight of the world today it's on your back
A heavy load like that is gonna hold you back, it's gonna drag you down
You know it just can't last, just can't
You know it just can't last

They thought they could use you, push you down and abuse you
And what's so sad is you've decided to hide all your feelings
Got more pain than you can deal with but ask yourself how can this last

I know you have the weight of the world today it's on your back
A heavy load like that is gonna hold you back, it's gonna drag you down
You know it just can't last, just can't
You know it just can't last

Dripping Springs

No I'm not moving to Dripping Springs, this is the nickname my sister came up for the day that I go get chemotherapy. I love it! 

So my third round of Dripping Springs went fine today. Poisons dripped into me, and I had a very good meeting with my doctor, helped along greatly by a visit from my wonderful cousin Kim, who is a hospice doctor. She and my doctor kind of powwowed and helped me come up with some better coping strategies so perhaps I will not feel so sick this round. My fingers are crossed that they work. And I do feel cautiously optimistic.

I decided to continue on with the poisonous devil drug so I'm full of red stuff right now but so far so good.

Got some really soft and snuggly slippers from Piper, they are helping me feel better already.

I've heard inferred smelled dreamt that some people don't how to respond to my posts, and I don't mean technically, what I mean is they don't know what to say. So if this resonates with you let me just say, you don't have to say anything special! Just treat me like you always treat me, I'm still the same person. You will not offend me. I keep trying to say this, but having cancer is not really a special thing it's an ordinary every day commonplace thing and it doesn't make me a different person. You can just say hi or I thought of you today or here's a joke (Susan T is the master of this) or ask me a gory question. You see we of the gross scary world want you to ask about it. Maybe you didn't know that. Now you do. Nothing special. No need for special words - don't try - just speak.

There Is No Word

by Tony Hoagland

There isn’t a word for walking out of the grocery store

with a gallon jug of milk in a plastic sack

that should have been bagged in double layers

—so that before you are even out the door

you feel the weight of the jug dragging

the bag down, stretching the thin

plastic handles longer and longer

and you know it’s only a matter of time until

bottom suddenly splits.

There is no single, unimpeachable word

for that vague sensation of something

moving away from you

as it exceeds its elastic capacity        

—which is too bad, because that is the word

I would like to use to describe standing on the street

chatting with an old friend

as the awareness grows in me that he is

no longer a friend, but only an acquaintance,

a person with whom I never made the effort—

until this moment, when as we say goodbye

I think we share a feeling of relief,  

a recognition that we have reached

the end of a pretense,   

though to tell the truth

what I already am thinking about

is my gratitude for language—

how it will stretch just so much and no farther;

how there are some holes it will not cover up;

how it will move, if not inside, then

around the circumference of almost anything—

how, over the years, it has given me

back all the hours and days, all the

plodding love and faith, all the

misunderstandings and secrets

I have willingly poured into it.

Our evening chef will soon serve us her scalloped potatoes and mixed vegetables and garlic bread and chocolate chip cookies. Thank you Kris. My driver my Thundercloud fetcher my listener today. Merci.

Today was my very last class - picked up final projects. To sum up my 45 hours of trying to drill into their heads to BE CURIOUS and QUESTION EVERYTHING and BE EVEN MORE TERRIBLY CURIOUS I made each student ask a question. Then I asked each a question. This was very engaging. 

Here are some of the questions my students asked:

What is life? (I explained eukaryotes, drew the tree of life, mentioned that scientists think that one thing common to all life is carbon, etc...and that I certainly do not know)

Who is your favorite philosopher? (Scientists like Michio Kaku, Albert Einstein, etc - the Dalai Lama, etc)

What are you doing for Christmas? (Annabelle and Dave, hanging out)

What was your favorite job? (Teaching)

Do you think Bill O'Reilly was right when he said that rap music causes black people to be violent and engage in crime? (Long discussion all about how super complex issues have many sides and stakeholders and it's not simple - too much to type here, we talked a long time. Call me if you want to discuss)

How do you stay so upbeat when your going through this? (Why not etc? I said a lot of course - as you know)

When will our grades be posted? (No idea)

What book should I read? (I said email me I have 50 off the top of my head I'll pick a few for you)

Many other questions - I made each person ask one.

Here are some of the ones I asked - one custom question for each person, and answers:

Did you change your mind about anything this semester? (Wow I don't know!)

Your father is very well off as you've said and connected. Success is a combo of grit and luck, and connections are part of luck. How do you plan to use those connections to get into a great grad school and then job? (Not sure)

You said my choice of Herdez salsa the other day was just ok. So what is the best salsa? (Home made)

How was your first semester different than you thought? (More fun)

What did you learn in any class this semester that blew your mind? (That if a person of authority asked someone to push a button to electrocute someone in an electrocution chair, 9 out of 10 would do it)

Venus or Serena Williams? (Venus)

What was your weirdest EMS call on Black Friday - to a guy who is training to be an EMT. (Old man pinned to garage door and killed by a car where the parking brake failed and it rolled down a hill )

Forgot the rest.

My chemo nurses are adorable.

My friends are adorable. 

You are.

The dark tide is rolling in. Pill time. I'm ok for the moment.

Just be there

A friend (good in the actual sense of the word) was just diagnosed with breast cancer and it looks like she's going down the same path as me. Damn that prickly brambly muddy path. I can see her, about 100 yards behind me, on this path that I'm tripping on and I feel for her. She is behind me with her binoculars and too many maps that keep dropping and unfolding and falling out of her pack down into ditches. The maps are all written in old unreadable languages and they all conflict each other. She is shouting up at me across the canyon and I am shouting back encouragement. She is being inundated with advice and good wishes, and she has many many friends who are surrounding her and love her. This is very good. I also feel for her because she is in the twilight zone of surrealism where you feel completely bizarre.

I guess I'll stop talking about her now and talk about me. I remember when my diagnosis first happened to me. It might've been the hardest time. Or at least I thought it was, now I think being sick with chemotherapy is the hardest. But stay with me - I may change my mind. Anyway in case you run into a new person newly diagnosed, or a person having a really frightening time (death of someone they love, news of a horrible event far away, divorce, a terrible break up, fear for a child in Iraq, news or fear about a possible awful disease, a terrible injury, panic, great pain...or any human tragedy) - I can tell you a few things, from MY perspective: I do not like it when people say that things happen for a reason, or  that god never gives you more than you can handle, or that a whole bunch of people that I don't know  (and who do not know ME) are praying really hard for me. I feels creepy to me and it feels like a lie. I don't mind positive thoughts and people thinking and caring about me, in fact I love that. Of course. Common sense.

I am not against prayer. I think the word "pray" is beautiful and that it represents a stillness, a meditation, a place of serenity inside each person, that is their way to connect to the greater universe. Each person chooses their own way to pray: Sitting by a river, staring at horses in a meadow, fishing, Islam, yoga, Paganism (root of most modern religions), nature, Satanism, poetry, Buddhism, Hindusim, Jainism, Woden, painting, photography (Tracy - well he does other art too of course), art (any), Wicca, studying insects, The Church of Scientology, Mormonism, The Book of Mormon, farming, shamanism, gardening, worshipping buffalo, body-building, meditation, cooking, yoga, running (Jara), Judaism, Hoa Hao, music (loud trancy dubby electronic music calms me), Bach (that too), Budweiser, drugs (most cultures do this), Christianity, sex, physics, Greek gods, Navajo mythology, math, string theory, the theory of everything, and on and on in an infinite number of ways, many of which are unknown except to the one self. Even the word universe, an old word, tells us this: one truth.

I am open. I am open. I am open. If you want to pray to your god, even on my account, then of course that is fine with me. If you are thinking kind thoughts about me and you care then I shall thank you and I shall love it.  

Do whatever you want.
 
I think that the chatter toward a person with cancer is more about the speaker than about the sick person, and it's a sort of a fear-based freak-out distraction defense mechanism OH MY FUCKING GOD I HOPE THAT SHIT NEVER HAPPENS TO ME! OH NO DID I JUST THINK THAT? OH NO I BETTER START SAYING ALL THAT GOOD STUFF SO GOD WON'T BE MAD AT ME HERE GOES BLAH BLAH BLAH. Now that I think about it I am kind of giggling (will god strike me down - of course not) and it's kind of funny and I find myself feeling a bit sorry for anyone that feels like they have to go into Hallmark card mode. Actually this whole thing is kind of funny and absurd. Life is absurd and that's ok.
 
So all I am saying is think about the person when you talk. Sometimes words can be scary to a hearer of the words even if the speaker of the words does not know this. It takes awareness.

We are 70 trillion atoms that coalesce together. Starting with one atom and then one cell, or two, beginning with Mr. Egg and Mrs. Sperm. They turn into those 70 trillion atoms that stick together for 70 or 80 or 90 or 100 years and then fall apart. Entropy. No one knows why.

Cancer does not happen for a reason and when someone gets it central casting does not suddenly cast them into the role of "superstar fighter" or "cancer's ass kicker" or "amazing wonderful angel of a super great person that will inspire us all." Cancer happens every day, quietly, to lots of people - some of which are really wonderful people that you like, and many of which are just regular boring people, and some of which are assholes that you would not like at all. So please do not stereotype all people who have cancer as any one type of person who needs any one type of communication. We are still just who we are.

If you want to be helpful to a person flailing, just be there. Go there. Listen.

I like Alanis Morrissette and the lyrics to this song. If we can approach being like this - then yeah, that's helpful:

You Owe Me Nothing in Return

I'll give you countless amounts of outright acceptance if you want it

I will give you encouragement to choose the path that you want if you need it

You can speak of anger and doubts your fears and freak outs and I'll hold it

You can share your so-called shame filled accounts of times in your life and I won't judge it

(and there are no strings attached to it)

You owe me nothing for giving the love that I give

You owe me nothing for caring the way that I have

I give you thanks for receiving it's my privilege

And you owe me nothing in return

 You can express your deepest of truths even if it means I'll lose you and I'll hear it

You can fall into the abyss on your way to your bliss I'll empathize with

You can say that you have to skip town to chase your passion I'll hear it

You can even hit rock bottom have a mid-life crisis and I'll hold it

(and there are no strings attached)

You owe me nothing for giving the love that I give

You owe me nothing for caring the way that I have

I give you thanks for receiving it's my privilege

And you owe me nothing in return

And no I do not claim to be at all even one tenth of the amazingness that the Dalai Lama is but I aspire, and I like to think about his words and his smile.

Where ya been

They ask. Well some of the nicest people in the world, also known as my actual blog readers (a small group), have asked me why I haven't been blogging much lately. The truth is, because I'm boring, 

And/or.

I've been busy and I've been feeling really pretty great (Albert Einsteinishly - that is, relatively - and relativity makes all all all the difference) so I guess I don't have as much to complain about. I don't have much to say. What the hell does that say about me? That I'm only interesting when I am a cantankerous carbuncle of disgustingness stuck on the side of a piece of cardboard left out in the rain? That I only have something worthy to say when I'm complaining? That really there's nothing much to regular me? Or that feeling shitty just gives me an excuse to pretend to express myself when really I have nothing to express? Perhaps.

Let it be.

Today is Tuesday. I have my third set of chemotherapy in two days - on Thursday. I've compartmentalized this incredibly well. In nesting boxes. Thursday is lying in a very small compartment that is inside a box on aisle 17 of my mind. You cannot get to that box unless you go find the librarian in charge just to look up its coordinates in the card catalog but she's kind of too busy to even look right now. She's off in the stacks with the dark janitor. Anyway if you you catch her attention, and she finds the information you're seeking, and then gets a warehouse person, you can go down a dark steep corridor and get one of those beeping machine car pallet movers to drive up that aisle, then telescope way up to the top shelf. He/you/I might be able to pull down the box/compartment that contains the knowledge that I will be doing chemotherapy on Thursday if you really want that box. I don't. 

Thursday will find me feeling violently disgustingly sick again. Thursday will be 12 days long. 262 hours. I don't really want to think about that ever. Much less do it. Even though at the same time I am honest and of course I know this is coming. I'm dreading it but my dread is underneath a layer of strawberry ice cream that is planetary.

Weirdly, this experience has been a tiny little bit like childbirth - in that you forget the pain a little bit as time goes by. It recedes. This is good, otherwise I might be in a mental institution. I am not kidding. 

So far my chemotherapies go like this: 12 days of feeling like death, followed by eight or nine days of feeling progressively better, first like 20% of yourself, then 30, 40, 50, 60, 70, 80, 87. Then you remain at 87% normal for a few days, and then the cycle starts over on day 21. Or something.

So at noon on Thursday, yes, I am back on chemotherapy once again. I KNOW!!!!

I thought about dropping one of the drugs that is in my regimen, and I still don't know if I'm going to. Adriamycin. I won't know if I'm going to take it or not right up until the moment that the needle pierces the plastic tube that pierces my chest. 

I've done so much research on Adriamycin that I have decided completely against it and to never take it again. NEVER! Then when I dug a little bit further into the research I decided that yes I must take all six doses of Adriamycin and it's extremely important that I do so! YES! And then when I researched a little bit more I came up with the conclusion that was somewhere in the middle of those two poles. A big fat: UHHHHH UM UHH YEAH LIKE HMMMM UH UM 

I could sneak into a conference right now and give a fairly lucid speech on this drug. I'll let you know what my latest final plan is. Presently.

I'm also thoroughly not impressed with the drugs of the 21st-century. They promised me drugs. They promised us jet packs. They promised us impenetrable raincoats. They lied. 

Zofran doesn't do anything for me. Compazine is a freaky old drug from 50 years ago that doesn't do anything for me. Lorazepam is a raindrop on a Patagonia coat. Phenergan works a little bit but it also has this nasty side effect called akathesia plus another one called tardive dyskinesia. More on the tardive thing in a sec.

Let us examine akathisia first:

Akathisia, or acathisia (from Greek καθίζεινkathízein - "to sit", a- indicating negation or absence, lit. "inability to sit") is a syndrome characterized by unpleasant sensations of inner restlessness that manifests itself with an inability to sit still or remain motionless. The term was coined by the Czechneuropsychiatrist Ladislav Haskovec (1866–1944), who described the phenomenon in 1901.^{[1][2] (from the not too great but thoroughly informative Wikipedia)}

Reglan is another drug that appears to have not much of an effect on me, and like Phenargen, it is rather impressively famous for the side effect called tardive dyskinesia that I introduced above. Which can be permanent. A week or so ago I was getting some fluids and medicine at a clinic because I felt so poorly, and the nurse practitioner ordered Reglan for me la la la. I slumped there, panting, waiting for relief, and my ears pricked up. I overheard one of the nurses say in an extremely amazed way (you'll have to add emotion to this that kind of make it sound like you're shocked and shrieking a little bit and your voice went up a bit higher): "REALLY!!!???  Are you SURE?????" I was granitely dulled out but even in this state the reptilian part of my brain awoke. So I looked it up. 

Let us know examine tardive dyskenisia:

"a neurological disorder characterized by involuntary uncontrollable movements especially of the mouth, tongue, trunk, and limbs" (from the Merriam-Webster online dictionary)

The best way to treat this is to prevent it, in other words don't freaking do a drug that could cause this because it can become permanent. And real real real bad. Mind you, when I was feeling as bad as I was, kind of like the last person at the very tip of the Titanic as it was going down, but they were welcoming the icy sea, I possibly would've traded feeling well for those symptoms above. I really would have considered it. In fact I did consider it and I said yes give me the damn drug. Right now. But it didn't work. Yes I took it that's how bad I felt, but it didn't do anything. 

Damn.

Believe me there's a lot more that you could look up on both of these peculiar little side effects, but the more you read the worse it gets so I pretty much stopped reading about them for fear of wanting to jump into a mineshaft. Reading about side effects of drugs is a rabbit hole.

Okay back to my original rant on drugs. So far I have not encountered an antinausea drug that really makes me feel good while I'm doing chemotherapy. And so, I'm becoming dismayed at the entire medical world, and its apparent lack of ability to look at the whole patient. I mean here is a person who feels absolutely dreadful, miserable, low, apathetic, and what they hear is: have you tried drinking ginger ale? (Smile at the rumpled person). Well take the Zofran, and if that doesn't work you can take a Phenergan, and that that doesn't work you can actually take a third drug! (Look sympathetically at the gross human crumpled before you). Et fucking cetera.

But wait! THEY DON'T WORK! Where are the miracle drugs? I'm asking for Marinol. After that morphine. Am I kidding? Don't know.

Oh well. What else?

Today I threw my class a party, because it was my last real day to teach. For the entire year. Well that sounds melodramatic since the year is ending in a few weeks. I should say until next fall, which is a big deal for me teaching is my favorite thing and it's very hard for me to take the spring semester off, but I've decided I should do this because of how I feel. Well it is the last day for the academic year. This is sad for me. 

So this morning Mike and I made 25 breakfast tacos. By hand, he made the bacon, and I scrambled 24 eggs at once, which was rather hilarious. I brought my kids with me to school and we served each student a breakfast taco and some homemade chocolate chip cookies and some orange juice. We waitressed quite nicely. It was a fun day.

And I've been cramming Christmas shopping in the last few days, in preparation for being down and out for most of the Christmas shopping season. That is also been fun. Doing regular ordinary things is really great for me right now.

I received a beautiful cashmere scarf and hat from Italy today, thank you Annalisa. How incredibly sweet of you. People have been so kind to me, I hope that you all know how much I appreciate you.

I drove on the field trip yesterday with the eighth-grade at NYOS charter school. It was fun even though there was some squabbling and arguing amongst the 13 and 14-year-old girls about who got to ride in the van and sometimes the art of graceful living was not very full of grace. However I loved it all. And I shall do it again.

Tonight I am going out to dinner with my breast cancer support group. We are going to discuss how much of your boob caves in after some of it is scooped out. We might even strip off our shirts and do a comparison right there at the brewpub. I have no idea. 

Last night I went to a bookclub hadn't been to for a few months, and it was a breath of fresh air and several glasses of fresh wine, and many many hours of fresh laughter and conversation. It's been good getting back to some fun. 

And now I will be getting back to my cave. But I'll be writing to you from there, and waving.

From "Atlantis" by Ellie Goulding:

Where'd you GO? Where'd you GO? Where'd you GO? Where'd you GO? 

Where'd you GO? 

I'll forget you not
I'll forget you not
I'll wait for you... for you... maybe

Where'd you GO? 

Where'd you GO? 

Where'd you GO?