Days

What are days for? This has been asked and answered countless times by many artists, poets, businessmen, teachers, philosophers, moms and dads, coaches, agents and children and the elderly of any age. Yet, it's unknown and remains so. 

Phillip Larkin said 

What are days for?

Days are where we live.   

They come, they wake us   

Time and time over.

They are to be happy in:   

Where can we live but days?

Ah, solving that question

Brings the priest and the doctor   

In their long coats

Running over the fields.

True enough. My mind runs over this question continually. I'm structureless at the moment and this is uncomfortable to me, but I'm having to learn to get used to discomfort lately so I will adjust to this I suppose. I refuse to let my illness - or rather the illness of its cure - become the scaffolding upon which I build my daze.

And yet. Here it is - sitting elephantine upon my schedule, obliterating all other events and desires. How can I pretend otherwise?

I an about to do my final chemo this Thursday February 6th. Everyone around me reminds me hourly how fantastic this is. But I just feel flat. I have a bit of neuropathy in my toes that's still there after two weeks (not supposed to be there now they say - medium to large uh oh) so I called my nurse and she said if it doesn't go away they may postpone the last chemo. Quelque horreur. WHAT?!!!! Please please no. I must get this chemical destruction over. I confess - I have built my whole schedule, my wholeOctober to February life, yes yes yes I admit - my whole everything - on 10:30 am Thursday Febrruary 6, 2014 being the last time I ever allow a person to puncture my chest with a two inch curved needle and then spend five hours flooding my halls and vestibules, my formerly private and hidden, secret internal passages - with sickness and death, while I sit passively, sweetly, inviting them to do so. 

If this has to be postponed even a minute I 

I don't know. Can't finish that sentence. 

I can't wait to end this.

If my toes and fingers are still numb I may lie. I'll say they are perfectly fine and I can feel everything. Although the doctor gods want to scare me by saying this kind of nerve damage can be permanent and disabling - what if I can't button my shirts, or my pants? What if I can't hold a pencil? Walk? What if I can type my blog onto my phone? What if I can't use a fork? Change the song?

Also, my doctor will be out (Where? France I hope) so my last chemo will be with her partner - a man I've never met. I get to be poisoned by a stranger for my last dance. Will I like him? Will he be kind? What kind of man will he be? I hate him already.

Depression is another side effect of the bus crash that is breast cancer. Barely want to sit up these days. Will pass. A nutritionist says I'm low on B-12 and minerals so today I plan to drink a gallon of honey and then go outside and eat some dirt. I'm going to go to the park and roll downhill and if I land face down I'm just going to start biting the earth. Maybe this will make me feel better.

Or I could take her recommended bitter supplements. The mineral B-12 person I met yesterday was wonderful and kind, and as gentle as the daily sunny warm 2 pm afternoon rain on Mount Haleakalā.

I loved being with her and her energy. I could feel her. Yet, my research-paper-teaching brain causes me to question all information that I hear about, on any topic. I want to look at objective, credible, evidence. I can't find very much of this about vitamin B12 or organically bound minerals. Humans evolved to be healthy if we do what is healthy for our species, which is wander around all day like hunter gatherers, and eat actual food (plants and animals who eat plants all of which were plants growing in rich soil and photosynthesizing madly - so we all ate the energy of the sun). Of course we don't do this stuff so perfectly in our culture any more. So surely we could benefit from good supplements, right? That makes perfect sense. Yet, which ones, why, when, how, who? That is the unknown, and it leaves a huge space for misinformation to slip in. I don't like this. Does NOT MEAN these are not good for me or that the lovely person I met yesterday is incorrect or not a superb expert - I'm just saying that my knowledge gap sets me up for misguided behavior (my own). Anyway, I am trying these and I will see what happens. But I worry about those vitamin stores I see on the highway as I'm driving along, that sell hundreds and hundreds of thousands of different little teeny tiny pills for hundreds of thousands of millions and millions of dollars to lots of people. 

Today is a day. Here's how I spent part of my day, which serves as an illustration for the types of days and the type of life that I'm living currently: I cooked an egg, but not quite enough. I put it on a plate, ptrettily, with a tangerine and a banana. I ate it mostly. I decided to pause, and rest my fork, or maybe "decided" is too strong a word, I just had a momentary moment and while trying to put the fork down on the plate (while lazily watching The Today Show on my fancy light colored couch) the fork flipped over, splatting egg yolk all over the couch, then in my haste to rectify the situation, I dropped the plate onto the coffee table where it didn't break (yay) but then my iPhone slipped out of my hand (why was I holding it - I don't know) and it landed face down in the plate in a pool of runny egg glunk. Whatever. Carry on.

Here is the former location of my fancy smart phone:

And now I'm onto another hour, about to go pick up a van full of teenagers and drive them all over town, including someone's house, the hospital, and thundercloud subs. Or something like that. While listening to loud emo electronic music. This will probably be the best part of my day, as well as the most annoying. Lorde have mercy.

What did Virginia Woolf say about the hours? Of which the days are made:

"Always the years between us. Always the years. Always the love. Always the hours."

This is supposedly from her suicide note to her husband, yet I don't see it this way. Or, I should say, that doesn't bother me at all. I see her words about the hours as wisdom. All we ever have with each other is the second, the minute, the hours and days and weeks and months, all distilled down to one long shimmering memory that goes backwards and forwards. 

Right now the days and nights are all one and are all long. I look forward to a different part of this long day.

Spindles

Another drug I injest through my chest is called Taxotere, which I have discovered is an "anticancer substance of vegetable origin" and is also a "spindle poison." Are you a vegan or vegetarian or or person who presumes to like vegetables perhaps? (I say presume, because in some of my experience vegans and vegetarians are people who do the worst things to vegetables, which I find highly ironic. I think vegetables can be quite delicious.) Vegetable is now a highly charged adjective. Vegetable poisons. Vegetable politics. Vegetable furniture. Vegetable counseling and mail order grooms. 

According to the Merriam Wenster Dictionary the term "spindle" means:

1 a : a round stick with tapered ends used to form and twist the yarn in hand spinning b : the long slender pin by which the thread is twisted in a spinning wheel c : any of various rods or pins holding a bobbin in a textile machine (as a spinningframe.

I tend to get spindle and spinning looms and spinnerets or something mixed up in my head in some vague fairy-tale-evil-stepmother versus beautiful innocent young girl miasma, or a spidery Ariadne Greek themed dream. With pricked fingers and blood and death and sleep and dark attics or Hades. Metaphor, part of the layered Jungian same story never ending narrative of human life: blood birth, blood spilled, blood death, no escape. We, as in humanity, have pondered and written our story, seeking its meaning, for millennia, always through a red lens. A feminine red lens - overcompensated for with fits of knights and rules and gods. Yeats said the "blood dimmed tide." Always a prick and innocence lost, and always death/birth. To me this spindle idea is part.

So then, what is a spindle poison? Is this a redundant phrase?

Well apparently when chromosomes break apart they then migrate along a "mitosis spindle" which is a thread of protein. Spindle poisons get in there and "disorganize" this action. Let's just say they fuck it all up. The chromosomes, a colorful bunch, are all like "hey let's split, cheerio!" and they ride their little tiny bicycles along the thread highway and then this poison rain comes along and rains sludge upon them so their little windshield wipers on their goggles don't work and they all crash up. Or something. 

A quote in and amongst the jargony text I'm inferring does say:

"Unfortunately, spindle poisons, as numerous and varied as they are, still are yet to be 100% effective at ending the formation of tumors."

That is rather unfortunate. Right now that little set of evil vegetables is killing and chilling in a Poe-like manner parts of me. Namely the most far out parts, the very ends of the very ends of my star points if I were a starfish: my finger tips and toe ends. They are deadly tingling or tinglingly dying. Their nerves are shriveling up and calling in sick. I only hope that if a rogue cancer cell is hiding in my body, that it's chosen Big Toe, Right Side, as its address because everyone in that room is dead. 

Where've I been?

Mailing stuff, lots of stuff. I've been very postal.

Making tea.

De-pressing

Reading cramming gorging on poetry

Losing eye hair beauty

Even doing online poetry trivia contests like some kind of freak cat poetry lady weirdo.

Having guests. 

Getting comfortable with being awake all night and just being there. I feel about the same if I sleep or don't, eat or don't, drink or don't. Do or don't. Mostly I don't. Wanna.

Dreaming. In one dream I was angrily gushing at my mother for not understanding how awful it was for me to feel so wasted on life/death feeling that I wondered if I wanted to go on, that it was like I'd lost my own me and saying accusingly to her something like god you don't even know what it's like, it's like losing a child, you don't even know! And simutaneously knowing how impossibly hugely grandly evil a thing that was for me to say or even conceive of because yes she did know did lose a child my brother and no one knew it better than her, and me, and my sister, and my father....and at that moment the dream dissolved disintegrated and I rose to the surface of my consciousness (under which I'd only been an inch) with a dreadful feeling of guilt and shame and awfulness and dread sorrow. For her. For her? For what? And the question of am I really a horrible person? Everything was terrible.

Floating. Forgetting. Everything.

Do

Write to me

Borrow a book

Ask me a favor

Take me out to lunch

Take three items out of my house

Tickle my child

Put away my dishes and shoes and scissors/debris

Tell me about you

Share a fantastic poem

Tell me what you think about the music I recommend you listen to

Puzzle me

Give me a long survey or questionnaire or exam or quiz or test

Watch television with me while eating snacks

Take my children out to lunch

Charm my husband

Leave me a secret note written on the wall somewhere in my house or inside of the door or cupboard 

Say anything

Laugh inappropriately 

Tell outrageous lies and stories  

Don't

Bring or send me any physical items larger than 2 inches tall by 3 inches wide, unless from Nordstrom or Iceland or your drawer

Worry

Fear me

Wonder what to say - anything'll do

Censor 

People asked - that's why the list above. 

Last chemo February 6

Then I'll be radiant 

Sources:

1. Made up 

2.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086919/

3.http://www.oncoprof.net/Generale2000/g09_Chimiotherapie/gb09_ct12.html

Castel del Monte, Stupor Mundi, and red poison

About halfway down the boot of Italy lies a picturesque little village with its accompanying old castle, something you just don't find around here outside a Hollywood set:

The community and castle or castel as they spell it is called Castel del Monte - "of the mountain" I deduce using my lame Latin root skills. Some poor toddler named Frederick took over the reign of this place at the age of three when his dad Henry, croaked, probably from syphilis. Well I made that last part up, but who knows. This was in 1197. I bet it was dank and not terribly clean, but the sex was the same.

Anyway Frederick managed to hold onto this until 1250. Frederick actually turned out to be a pretty cool guy, he helped get his anarchistic community calmed down, he started the University of Naples, and he studied five languages and high level mathematics. 

He was a real rennaisance guy ahead of the curve. He brought in scholars from all over the world, he had Aristotle translated into Latin, and he studied Greek architecture, and oriental toilets. His focus on the middle east and Muslim architecture led him to want to design a mathematically perfect castle.

Here's what the castle looks like:

He had it built in the middle of nowhere, on a hill, using Muslim and antique mathematical principles for its design, rather then the Christian principles that dictated the look and feel of many other castles that were built in that era. For example this castle had no moat, no kitchen, no chapel, no real ornamentation. The thing is an octagon with repeating trapezoidal rooms, made of limestone that glitters with quartz. The upstairs rooms are fancier than those below, with vaulted ceilings and Greek style triple columns. 

Frederick sought the input of the orient too - installing hydraulic toilet and bathing facilities. I can't really imagine the castle about a kitchen, so that bothers me, but otherwise this seems rather magnificent. 

No one lives there now, and it is eroding, although so slowly that we can't see it. I don't think my house will be around and seven or eight centuries. What will? You can still go visit this place if you can find it. It's still in the middle of nowhere.

Okay so fast forward to the 1950s. The pharmaceutical companies all over the world are in a big race to figure out who can make the most money by solving and curing cancer. One company in particular, Farmitalia Research Laboratories, an Italian company, apparently sent out a bunch of people to try to find soil microbes toward this endeavor. I can't really quite imagine this. Let's try to imagine it. Maybe it was a guy named Paolo, or Cosmo. Driving around in a teeny tiny little blue car with his other grad student type colleagues all over the Italian countryside, with their little test tubes and scoopers and cork stoppers. They would get up in the morning from their crap hotel, sit outside and have a coffee and a cigarette and then another coffee. And then say the hell with it let's go, get dressed, grab your stuff, get in the car and drive around. Periodically they pull over -  (When? Where? Why? What drives the knowledge that a particularly important soil microbe lies nearby?) - dig around in the dirt, sniff with their little inept noses and put samples in test tubes that they then slap masking tape on to and scribble in non-sharpie pen: date, location, notes. 

Well a couple samples were taken right outside of this Castel del Monte. And they turned out to be golden, or I should say: red.

Outside Frederick's octagonal monolith someone found a new strain of Streptomyces peucetius, which turned out to be very valuable to the pharmaceutical company. They'd stumbled upon something important.

How did it get there?  Why? Wonder if this is something to do with Frederick himself? Did he cough onto the soil a magic antibiotic from his own body back in 1237, that then grew like Jack's magic bean into a microbiological soil strain. No… That can't be. 

Streptomyces peucetius. 

When I see these words it reminds me of strep throat. And a strep throat has been a secret ingredient in many things including cancer research from over 100 years ago when a doctor noted that if he let his patients almost die of strep throat they would sometimes get rid of their cancer, and some more modern reports that have to do with strep throat and autism or neurological problems. I myself am a person that is had strep throat over 10 times, as have my children. I wonder if strep is a key? To the body? Immune system? Cancer? Brain? Run off and get your PhD on this some young bright enterprising person, I'm getting back to my story now.

Scene: 1950s cancer race. A breakthrough at Castel del Monte! But MERDE!  A dastardly competing French team of young soil sniffers had also discovered this same compound at about the same time so a fight sprung up! They had to share the prize, and decided to name the new red compound after a word for an old pre-Roman tribe that used to live in the area (Dauni) and the French word for ruby: rubis. The new compound was to known as daunorubicin.

(PS - if nothing else, let this history remind you, that yes, in the future there will be a term that says "pre-United States civilization" and another term that says "post American civilization." The words "Europe" and "New York" and "Christianity" and "China" will be dusty antiques forgotten. We are all going to go the way of Frederick and the Dauni and our ways and religions and castles will be forgotten). 

Back to the pharmaceutical world of Italy/France and their red prize. They were thrilled, trials started immediately, the stuff was found to help a lot with cancer that it been previously untreatable. TRES BIEN! DIAMO UNA FESTA! MERAVIGLIOSO!

Unfortunately people started croaking due to "fatal cardiac toxicity."

Back to the drawing board, they fiddle around with the formula and made it a little bit less deadly. Techy sentence:

"A strain of Streptomyces was mutated using N-nitroso-N-methyl urethane and this new strain produced a different, red-colored antibiotic." Don't ask me. 

It was a bit less toxic, not a lot, but they wanted a new name. Interestingly they named this new poison cure afyer the Adriatic Sea - calling it Adriamycin. My drug.

So I'm taking the poisonous red Adriatic Sea-named thing discovered in the 50s in some dirt outside of a castle that was designed by a guy Frederick that was so far ahead of his time that his nickname was Stupor Mundi, meaning "Wonder of the World."

Just pondering what is happening to me right now. I'm hairless. My throat and tongue are covered with thrushy fur which makes me sick of myself. My house disgusts me. My spirit is tired. Yet little parts of me perk up at little things, like maybe a movie I might watch today would be good. I went on a mile-long walk yesterday with Susan and that did not kill me. The sunshine felt pretty good. I ate a good dinner last night. I have some bookclubs coming up. I have a best friend coming to visit me tomorrow. Family too. Things will be okay I think. I'm almost done with another super excellent book. I like to read. Birds exist.

I'm so hungry and starving my stomach is caving in on itself yet my head and my mouth tell me not to eat.

A friend had a double mastectomy Monday and reconstruction surgery at the same time. I want to go visit her, but I wonder if the thrush in my mouth means that my immune system is not very strong, and if going to a hospital would be a super bad idea. Stupendously stupid. Secretly a part of me wants to go get checked into a hospital and put in the ICU and knocked out and woken up in a month when this is all done. Maybe I'll go there and lick the floor.

Is my history tied up with Frederick's? 

Stupor Mundi? Muslim architecture? Some random French guy taking up a piece of soil? Is my history tied up with you? Is my history even important or should I quit worrying about it and just look forward? Why am I obsessed with poetry?

Sources

http://whc.unesco.org/en/list/398

http://www.myelomabeacon.com/resources/2008/10/15/doxorubicin/

I want

I want all my pictures hung up beautifully and prettily 

I want the books found and stacked 

I want both of my childrens' beds made high and fluffy with thick comforters and pillows and stuffed rabbits and sunshine 

I want my room painted pink with a tall pink and red flowered bed I have to crawl up into

I want all new clothing soft flannel yellows and dotted things

I want never to see or feel this again 

I want no ceiling

I want fresh air

I want clean square ice cubes

I want no gifts 

I want no drugs to dull me you think I'm better on them but I'm just more shut up so I don't bother you but it's not better

I want no cold only palm heat sand drench my feet 

I want this taste gone

I want a fat cat to lie on my back while I lay face down on a large clean comforter that's a peace green with white embroidery 

And Bach

I want my mother to make it so

I want this to end but I can't see it

Next day after chemo five - snail world

Night Poem 

Hiccuped and burned esophagus 

All night

Ceiling projected clock said 10:42, then 1:11, then 2:30, then 5:51, then lightened.

Not so bad as long as I don't move one muscle

In my now bright room

I'll look up some better poetry while my dear heart mixes me a batch of black cherry Koolaid don't judge me it's all I can stand.

Here's one from The Poetry Foundation:

"Follow" by Leah Umamsky

Follow where all is. / Follow the transfused. / Follow what is still and what is still-attracting. 

That light / That beauty / That love / That, that is massy-borne and rising up, like a drifting star.

Like stars lift. / Like lifting stars. / Like the lifting of stars, I rose. I rise.

Rose. Rose. Like a thing beyond words: satiated.

Let lie in the ravage. / Let lie in what is ravaged-wrought.

Why fear what hasn’t become?

I beckon, like light. / Like a star, I will beckon. / You will oblige. / You will lend the want. You will eclipse my blinding.

-You will know nothing ---. Nothing. You will know nothing of what has been dark.

•••••••••••••   I like this poem a lot. Why can't I write a good poem or a blog or story or book? What is the trick? 

I just got back from the clinic where my dear friend Rebecca took me so I could get my Neulasta shot, the shot that supposed to prevent my bone marrow from going so low that I get sick and end up in the hosputal. I also got a giant IV bag of saline solution to help me stay hydrated. I am so weak and tired right now I cannot get out of bed. I may be here for 24 hours a day for a few days. They say this is the cumulative effect of chemo and such it is. My body betrays.  The nurse said hiccuping uncotrollably is a form of nausea. Delight.

What people say about my blog:

It's raw and real

They love it - thank you

It's just a journal and doesn't matter 

It's good writing and should be published

It helped them get through a crisis - I'm honored 

It's informative - keep writing 

It's scary

All true and today might I add - the spacing is off.

I'm off. My eyes close while I'm talking, I'm brand new kittenish eyes glued shut, don't want to talk, my cracker remains unchewed and dissolving in my mouth as my teeth go to sleep.

Second to last

Second to last: you may only have a second more to last in this world, what should you say? "I lo..." Or what?

Second to last: you may have gotten second to last place place, a very prestigious rank in an Ironman competition but pretty suck ass in a job interview featuring one other candudate.

Second to last: seems pretty good to consider I'll only have one more chemo treatment after today's. 

In three weeks.

yay? tiny yay spelled ok

Learned

I found out today that three weeks after my last chemo treatment I come back in to my oncologist so she can see how I'm doing, and also meet with my radiologist so she can set up my radiology appointments. It looks like it will be able to have those appointments over on MLK Boulevard which is much much much closer to where I live and that would be nice. I get to pick what time of day I have it because I'll have to come every single day Monday through Friday for 5 to 7 weeks. 

This is a bit of a conundrum...how does one pick a DAILY standing appointment? Without much of a scaffolding of a structure or scheme to fit it into, to nail it on to? To crucify it onto? If I worked full time I'd pick lunch hour. If I worked part time I'd pick a non work time. 

But you see, I'm in what you might think of as a kind of enviable time of life, where I don't really have much of a schedule, and I get to "focus on health and recuperation and relaxing" – but this is actually very disconcerting and upsetting and doesn't feel good. I don't like aimless days and hours and minutes and seconds and weeks and time and time and time. It depresses me and makes me feel like I'm nothing much with not much  purpose or even shape. I and the couch ooze together and have the same purpose and thoughts - stuffing, fuzziness, dullness, softly rectangularity, and stillness with no insight.

Thank god for the kids - they orient me, some.

How shall I spend my days. Watching soap operas and eating bonbons? Taking an art class? Substitute teaching at the junior high? Going out to lunch? My mother-in-law I really wants me to take the fancy jewelry making class. I don't think I fancy making fancy jewelry. A friend wants me to kind of coach her 19-year-old college student about time management, that sounds pretty good but I'm not quite sure when I can start or where. I like that idea though. Everyone and their dog, and the dog they rode in on, tells me to rest and recuperate and heal and just be kind to myself. What in the world does this actually mean! Recuperating and inhaling? I simply can't do this 24 hours a day, I will bore myself to death.

I also learned how they came up with the six-time regimen for the particular chemo regimen I'm on. (TAC) They used to do it for longer and longer cycles of time till the patients died. Suddenly one day they realized, oh my, it's not the cancer that's killing the patients, it's the chemo! So they experimented and experimented to see how long patients can last without croaking: about six times.That's nice. 

Other stuff:

Doctors can be so nonchalant. I asked her today why I was still feeling so queasy right up before the time when I had to start chemo again at the very time I should be JUST FINE. 

Here are the reasons she thinks it could be so:

1. Heartburn - take such and such

2. Pavolvian conditioning - she said "does the thought of me and coming here make you sick?" I had to confess that it wasn't really specifically her, since she doesn't sit around with me during chemo, but going there and sitting in that ugly room and smelling everything is kind of gross. And I'm also becoming oddly conditioned to not like my room, at home, and my brand-new chosen house. I don't like my bed I don't like my lamp I don't like the walls I think the room has a weird horrible smell that no one else can smell. Purely Pavlovian. Dr. G told me that that happened to her husband last year when he had colon cancer, so that when he was completely finished with everything they repainted the room got all new bed linens and curtains and stuff. We may have to do something like that too even though I like these bed linens. The whole thing kind of makes me ill. Maybe I am getting a bit mental.

I often write in the difficult and frowned upon second person. Why?

One of my adorable nurses changed her hair. It's a weave and I asked if it hurt her and she said not very much.

Chemo day so far:

Nice ride and company and lunch by Carrie - thank you! She brought snacks and two good books and Starbucks - a dear good friend.

Bleh feeling now.

A fancy dinner brought by Liz and her delightfully gourmet husband Clayton - roast, gravy, fancy green beans, potatoes - very nice. Hey! More tender than mine! Send secret.

Met a man today with fairly advanced tongue cancer. Cannot eat through mouth now. Met another tiny man today with stage four lymphoma. Overall I think I'm pretty lucky in the chemo room.

Taking a new heartburn pill that has side effects of arythmia, insomnia and a stiff non movable neck. Not delighted.

The Farm

The body is not really one organism. We tend to think of ourselves as individuals. But science is discovering more more than this is not the case. We are each more like a farm or microbome or microbio biological domicile or something. I don't think I have the scientific name correct. But our skin holds it in, and on the skin live billions and billions of other creatures, bugs that live in the pores of our eyelashes, bacteria that live in our mouth and throat and our esophagus and stomach and  intestines and all away through. We host tiny worms and bugs in our bloodstream and our bones and all over our bodies. 

And when any of the many communities on the farm get poisoned or rampaged, it upsets the whole ecosystem. That's why if you get antibiotics and they wipe out some of your gut bacteria you can messed up. Doctors are even now doing fecal implants for people that have dysentery that won't go away. Because the healthy poop can repopulate the unhealthy person's intestines with the right kind of bacteria. Isn't this amazingly fascinating? Disgusti-nating?

So how this relates to a cancer patient is when your body is flooded with a bunch of poisons it wreaks havoc on all types of stuff on the farm and then the farm's varying communities have to get out and retill their ground, get rid of their dead, make new workers, get new food, hospitalize and nurse their almost dead, rebuild their homes, and work ferociously to try to get back to normal - plus try to establish communication and trade with all of the other groups they depend on, serve, and deal with. Like a country after a natural disaster. Takes time to return to a state of homeostasis and health. 

So that's what I'm working on, that's my real project, although mostly occurs below my subconscious so I (meaning the "I" of our normal egotistical self-view) don't how to have much of an effect on it. I am no me. I am we. 

So it's more like my bacteria and cells and cute tiny worms and bugs are all floating belly up In a sea of poison flowing over them ruthlessly redly. Result: My farm is fucked up.

Reading 

I'm back in the mood to read a lot though, and I just read the collection of best stories of 2013, edited by Elizabeth Strout. I highly recommend that you read The Semplica Girl Diaries by George Saunders and the story called The World to Come whose author I cannot recall. The first one is absolutely hilarious in the beginning, got busting really funny commentary on being a parent raising kids fighting with your wife etc. etc., and then it shifts into a truly bizarre amazing concept that no one else has ever thought of, that came to Saunders in a dream. It in and itself is a scathing commentary in our commercialism and our ferocious seeking of prestige in our American culture. 

Next story is just so beautifully written, you'll find yourself drawn in to even if you don't think the subject matter sounds good, this is what happened to me. It starts off with a woman living alone in a cabin with her husband about 100 years ago or sometime in the 1880s or so out the middle of nowhere and how life was to dry and boring and they the same things every day. However it is observed with such beauty that evokes the countryside. A lonely woman makes friends with another wife grieving a lost child married to a work-driven quiet husbandeets a neighboring wife, and on weekly Sundat visits, they find sustenance and depth, iconnection, and real friendship in each other. Reminds me of a scene in The Hours movie, where Toni Colette comes next door to talk to her neighbor to tell her that she has to go to the hospital because she has breast cancer. The scene shows two women in that repressed time of the 50s were most housewives were pretty to look at but fake and repressed. Nobody really talks about what was real - but amazingly here in this scene the two neighbor moms looked at each other and talked about what was real for a second, and it seemed to be the only moment in either one of their lives when they could really be genuine, open, vulnerable, and themselves. They transcended and it was a moment of beauty and grace. There's real power to female friendship. Anyway I think this story captured it absolutely beautifully. Amazingly it was written by a man.

Now reading two good books at one time Brain on Fire and The Lowland. Both very engaging. Also ingesting lots of YA.

Recipes

What if you had a really long complicated recipe that you had made up from scratch it was a family favorite. Maybe chicken cacciatore, or some kind of fancy lasagna with truffle oil and mushrooms and oregano and spinach and five different kinds of cheeses and special noodles? Or maybe like a five layer cake with ganache and raspberry and with cream and chocolate and more whipped cream? Like it's kind of complicated?

Anyway when if you painstakingly wrote this beautiful long complicated recipe out by hand step by step by step by step. There are maybe 50 ingredients and 50 steps. Has to be done correctly.

Then what if you made 10 copies of it and send them out to your favorite aunts and cousins and friends? They each made it for their friends and their friends loved it in fact each of them had a big party and after the party everybody wanted a copy. So they each made copies of the copies that you made them. And then each person they got a copy and friends he wanted a copy, and so on and so forth. And your recipe was so amazing that it went around the world and there were 7 billion copies made? How do you think that 7 billionth copy would look woukd  it be legible or clear? This is what the cells in your body do every day. The recipe is copied over and over (DNA AND RNA). Mistakes are made. That's cancer. Cancer is just a recipe inside your cell that tells the daughter cells what to do when the cell divides. Each one of those daughter cells then does the same thing and so on and so on and so on millions and billions and millions of times in your life. Mistakes are made in everyone's body. Often times these messed up mistakes are killed or eaten. Sometimes they're not. That's cancer. It's probably happening in you right now, it's normal and often random.

Kids

One suffered such bad cedar fever I squeezed her in to her pedi yesterday and begged her to HELP US! This kid is so sick she's non functional and resorted to screaming while sneezing 157 times and rubbing her face bloody. Which made the other child freak out with annoyance flying tears and her own screams - a circus of hell. Hub was out of town, mommy starting chemo next day and not feeling sparkly. Dr. N helped - loaded her up with roids and sprays and meds - today 100% better. (Kid, not me). LOVE MY PEDIATRICIAN 

Little one shoved a staple under her fingermail at school - got it out. Now screams and fusses every 45 min that she is in dreadful pain and then hates our suggestions for relief. Repeat.

They still charm me.

Glad Mike is home.

Ms. Cunningham - coolest science teacher ever - brought two baby lambs to school today. With baby bottles.

The days of old returned

Long ago in a far off country I embarked on a terrible journey into freakout land. It doesn't matter when or where this was, all you need to know is that it was shear terror and panic and anxiety 24 hours a day. It was a physical sensation. I've tamped it down over the years with various methods but it suddenly came back last night at 3 AM.  I mean today. I think the body and mind are not different and that deep inside my body lives the knowledge of the bullet train of chemicals that's headed my way in 27 hours. The top part of my body, the head, the capital, still waggles its mouth encouragingly like talking and the eyes blink and the lips curve up, but deeper down the real brain is going into hyperdrive - the scenery is blurring, the heart is racing, the white rabbit is running and about to fall down the hole in sheer cliff panic. My body knows what my psyche doesn't want to say: that very soon I'll be so sick again, and I don't want it.

I can't think right write right now 

But neither can I do another thing

Must attend

Took steroids as asked with food or milk

Now what?

Day is full calendar booked but 

Hmmmmm....

Here I am three days from chemo - this is when I'm supposed to feel my best, relatively speaking. Here on day 18 I should be peachy clementine. But guess what? I'm not. I'm not peachy. I'm not refreshed reprieved reliefed. I have come to expect a wonderful vacation, a little oasis of calm in the middle of days that revolve in 21 day increments. I am now wondering if, in addition to the expected days of feeling caskety, if also doing this routine (a difficult tumbling routine) over and over has some kind of unkind cumulative effect, where the more TIMES you cycle through, the less bouncy-backy you get in the last half of the cycle.

Kind of like maybe:

Cycle 1

Chemo day - La la la! New life experience! Hook me up! I feel BUENO! I'm game I'm so game! No freaking biggy!

Days 2-13: Kill me now, are you freaking kidding me? I am so down and sick I am not believing this. Help.

Days 14-20: BOOM SHAKALAKA! Instantly one day I feel better! Let's party with champagne and fine cheeses and loud music and parties! I'm so happy to feel good! Exploding with joy!

Cycle 2

Chemo day: Oh hello there! Rather chatty and hamburgery with pals and icy Coke, lots of playful chatter, feeling fairly up for it, a bit leery but still riding the high of feeling so much better at the end of whatever that last thing was...

Days 2-10: Oh yeah. This again. Kindly ignore the corpse on the couch but hey isn't it super swell that she sorta came back to life in 9-10 days instead of 13?! Yes! Our advice was so wise! Round of back patting. The corpse declines to sit up.

Days 11 -20: Mostly back to life. Maybe let's party with a beer and maybe a bit of pizza. A little tentative. Hollow.

Cycle 3

Chemo day: Well ok I suppose but the fun due to newness has worn the hell off this particular item. Stick me.

Days 2-9: Ugh. Tried some new drugs, well they were ok but not worth a parade or anything, still fell into that poison lake from Harry Potter 6 (I think - the Half Blood Prince) and felt as Dumbledore  did after he drank that horror juice. Shaky. Flattened.

Days 10-20: Mostly came back. Um I'm ok I think. Uh ok I wanna kinda let's party rather quietly with orange juice and Project Runway Allstars who really are the B team but it's ok cuz I feel rather C teamish, streaming eyes, and snarky attitude may be off putting. But still, yeah, I feel better.

Cycle 4 (which I'm ending up presently) - looks are deceiving. Hmmmmmm...

Chemo day: The day after Merry Christmas nice to see the sweet nurses but just the sight of this room gives me the heebie jeebies, hate the dry chemical smell and the white gray mouse walls and the slimy squeaky leatherette chairs and the overflowing toilet over there and the long dark Freddy Kruger hallways and oh yes the bags held high so that gravity can be used as a lever to flood me with $20,000 worth of poison. Me not like. 

Days 2-8: Been there done that but this so-called knowledge and hard earned expertise doesn't help. I'm cut off again and feel like the liverwurst worst sandwich that got stepped on and then the person who stepped on it slipped and kind of wiped out, and as they wiped out the liverwurst sandwich it unceremoniously shot back underneath the fridge and stayed back there behind the refrigerator for five years. It's odd how nobody really noticed it. It's lonely but doesn't want company, it's disgusting and repellent, it's dehydrated but wants no re-enlivening water, it's unrecognizable even to itself and retains no deliciousness. Also I'm very tired and my eyes and stomach twitch a lot a lot like a mouse whisker. Disintegrating. 

Days 9-20: Waaaaaait a sec where's my reprieve? It kind of showed up, but then it rather slinked away, leaving me with a half-pregnant half-stomach 

-flu flavored life. I'm driving around, making dinner, eating dinner, talking and laughing and entertaining and seeming to have fun, but underneath it I'm not quite normal. If could maybe unzip my skin and take it it off, underneath would be a malformed sticky green person. Who I do not like.

Here in the "good" part of the chemo cycle I'm not experiencing the good part much. To whom do I address my complaints?

Everything smells off, in a dried out Hobby Lobby way, mixed with medicine. (I hate shopping at hobby lobby because of the smell). I smell this with my nose, mouth, and eyes, which then repel the onslaught with eye water. It's its own cycle.

I have chemo five in three days, then screamo six in three days plus three weeks. 

Distractions:

Going to the movies with friends. Today I saw August: Osage County, with Rebecca. Well, not starring Rebecca, but actually attending with, and sitting next to, her. Which was quite nice. And the Academy award goes to Julia Roberts, and another one for Meryl Streep. The acting in this was absolutely superb, the comedy as dark as midnight with no stars, the darkest of dark comedy. Some of it was gut-bustingly funny. Some of it was heartbreaking. And I must say I am lucky because I have never ever ever in my entire life been in any family situation that was as dysfunctional as the family that was depicted in this movie. I have never even seen that kind of dysfunction up close and personal, with a few very rare exceptions that totally freaked me out, at other peoples' houses. WOOOO I am lucky.

Reading. Up a storm.

I forgot what else.

To bed.

A few days away

In a few days I shall embark on chemo #5 - Thursday January 16 to be clear. I have learned a few things as somewhat of a chemo veteran:

No thing helps very much - only time. There is no blanket or cup of tea or food or touch or kiss or toy or book that can touch you when you're THERE in the valley of the shadow of death, to borrow a phrase from a favorite piece of poetry. I wish this was not the case. I so do. I don't want you to feel futile and I don't want to be futile when I try to help others, but here is a truth most won't tell you: when a human is in true misery, either from starvation or dehydration or nausea or depression or anxiety (the five horseman of hell to me) you on the outside have no power to help. You don't want to know this. It hurts to know. You do have one power, and that is patience. 

I'm not dead but I learned what it actually felt like to be ready to die, in 1996, after heart surgery, and I feel it again a few days now each chemo cycle. 

I feel scared because I now know a secret: when some is so sick that they don't pay very much attention to you or they seem a little detached THEY ARE DETACHED and are actually quite alone. You are not there. I hate to confess this to you cuz it'll hurt you but at that time you are not helping not needed not there. Doesn't matter who you are father husband child god best friend sister friend child kitten you are disconnected.

A white blizzard descends and everything and everyone is whited out. Your love becomes an idea of love once heard of far away in Nova Scotia. 

When the molecules of the chosen one begin to realign and things move toward homeostasis a bit, even a little bit - then rush in, you're back on the radar. Yes you.

You'll be there someday and understand, unless you are chosen as the lucky few lightning bolt shot or gun shot or sleep shot instantaneously to death. 

My eyes water incessantly.

My eyes are heavy, one closes.

My eyes saw two movies with my babies today.

My eyed are topped by the thinnest most stupidly and randomly chemically manicured /butchered  English garden row eyebrows of sparcity, they are neat but nut tidy. And not desired. These are prickly stickly thin sporadic weeded hedges of Death Valley.

My eyes search for your words.

My eyes dare not go to their invited yearly eye exam. Silly. How do poisoned eyeballs and retinae and rods and cones do their upside down spoon movie screen things without all sorts of fuck ups?

My eyes have thin spidery lashes no one mentions.

My eyes water poisonous tasting treason water I instinctively spit out. All day.

My eyes nor body are normal at all - watch out I can do easily deceive you.

My eyes look for you. 

Stats

Just a few facts today - we'll let them speak for themselves:

FACTS ABOUT SOME WOMEN I KNOW:

I joined a support group for newly diagnosed breast cancer people a few months ago. Sandy. Harper. Estella. Diane. Leah. Peg. Donni. Amy. We are now friends. We are in various stages of breast cancer treatment. The typical narrative is: surgery, chemo, radiation, then 5-10 years of a hormone suppressing drug like Tamoxifen. Some did chemo before surgery to shrink tumors first. Some did not do chemo and went from surgery to radiation. We are all on the same path at different places and we help the others along. 

We met for dinner last night. One is done with chemo and today is her last day of radiation - her hair is growing back, it's dark and silky. She wears a cotton washcloth under her clothes to keep the skin under her breast dry and not splitting open any more. One got hit by a car while crossing a street, a few weeks ago. A slow moving car whose driver did not see her. She turned and saw the car as it touched her and then slowly but quickly broke her pelvis in three places. She had to go to the hospital right away and then to rehab for a few weeks over the holiday. She was looking forward so much to completing her last chemo treatment but it had to be put on indefinite hold while she learned how to walk again. Her hair has started to grow back in and she now walks with a walker and is not sure when she will have to/get to complete her chemotherapy and then get to/have to start radiation. One got an infection from radiation that caused the doctors to put her on a medicine that is the same stuff that ate the oil in the gulf during the oil spill. It comes back. Other things going on in this group include an impending double mastectomy with reconstruction plus another surgery at the same time thrown in, dealing with side effects of anti estrogen meds and the fear of one of those effects which is another cancer, wondering why hair hasn't started growing back a month or two after chemo ended, forced menopause, and anxiety (all share this experience). We ate and laughed and planned future hospital and restaurant visits.

Another friend started chemo last week. The evening before she began the dreaded beginning, she went for a walk by the river and a pit bull walked up to her and bit her hand. Bloody bite marks. The next day her oncologist looked at the bite and decided it was still ok for her to start chemotherapy, so she did.

QUOTES FROM AN ARTICLE I READ:

I read an article that was written in The New York Times on January 4th 2014 called: "Why Everyone Seems to Have Cancer" By GEORGE JOHNSON.

A few friends sent it to me to read. 

Here is a quote from this article in a section that talks about heart disease versus cancer, as killers:

"But there are reasons to believe that cancer will remain the most resistant. It is not so much a disease as a phenomenon, the result of a basic evolutionary compromise. As a body lives and grows, its cells are constantly dividing, copying their DNA — this vast genetic library — and bequeathing it to the daughter cells. They in turn pass it to their own progeny: copies of copies of copies. Along the way, errors inevitably occur. Some are caused by carcinogens but most are random misprints."

Here is the link if you woukd like to read the entire article:

http://mobile.nytimes.com/2014/01/05/sunday-review/why-everyone-seems-to-have-cancer.html

NUMBERS:

We got an itemized bill for (only) some of the recent treatments I have received. We have insurance that helps pay a lot of it. The treatments have varying costs - here are some of them:

Doxorubicin liposoma (Adriamycin), one syringe: $11,214.00

Taxotere, 1 MG - $5,762.00

Cyclophosphamide 100MG - $1,215.00

Doxorubicin: $495

Taxotere: $4,343.00

Aloxi, 25MCG: $440.00:

Neulasta 6MG: $5,662.00

Kytril 100MCG: $300.00

These are a few from the three single spaced pages. Most of these will be six time drugs. I do not know why the same item sometimes has different costs. I do not understand this bill, any of the charges, how our insurance works, why we have insurance, why others don't, what insurance is, my cancer doctor's accounting philosophy, my doctor's philosophy, cancer drugs, dividing cells, cancer, health insurance, our culture's interpretation of ethics and health, life, or death.