People ask

Today I decided to go with a scarf. This one is very special. It was given to me by a St. Ed's friend who wore it 23 years ago when she had chemo for this and now she's wonderful. Thank you Bev.

I'm answering questions today for my panel:

Does cancer hurt? 

Well no, it doesn't hurt me at all. In fact I don't think I even have cancer. You see I found two small lumps in my last rest and I had two surgeries already where the doctor scooped out any cancer she could find in my left breast. And even when my two little grapes were nestled softly inside their breast home they didn't hurt me. Not one bit. They were made out of me and they were living inside a nice home that had lots of room. No pain. 

Cancer doesn't hurt you at all when it's in your breast. She said there's a little tiny bit left,  a 3 mm margin. So with one more small surgery she's just going to scratch that out in March. 

Cancer isn't really a separate thing, it's not like a space invader or bug that shoots into your body from faraway - it's just a mutated recipe in your DNA that makes whatever cell it's in inside divide and grow too quickly. It's YOU. Skin, milk duct, colon, lung, blood cell, lymph cell, brain, heart, kidney, liver, pancreas. uterus, prostate. Or any.

So do your cells hurt? How do you know you don't have one cell that suddenly had a tiny mutation in the nucleus of one molecule, and it's starting to divide more quickly than it should? How do you know? Does it hurt? See what I mean? You never know when you may have a cancer cell starting, or a cell doing something wonky. Like why are some of the cells of your brown hair starting to turn white? Is that a mutation? 

Most of the time when cells do something wonky they just die, the body kills it. We have mutations going on all the time, in fact this is what is has advanced our species. Here are some mutations that advanced us from amoeba to fish to mammals to primates to hipsters and war mongering Homo sapiens: 

1. Gills that mutated to be able to take in oxygen from above water

2. Fur that grow over the scaly body to keep it warm in differing temperatures outside of water

3. Nails that grew into claws to grip bark to be able to climb away from predators

5. Eyes that mutated to be able to see in the dark

6. The ability to walk upright on two legs so to be able to see farther, which enabled our species to be able to plan and hunt and gather

7. Enlarged brain cells and brains that enabled us to have more intelligence, this caused a necessary mutation in the method of birth, with Homo sapiens giving birth to less developed fetuses so that they could fit to the small birth canal. That's why our babies are so undeveloped. Because of our superior intelligence and large heads have to be born earlier in order to survive, that's why human babies are so underskilled and helpless. Baby horses can walk and nurse at birth - look around, almost any mammal is way ahead of us at birth. Or insect. We basically give birth to embryos.

8. Skin color changes mutated according to the amount of UV light that was hitting us

Tons of examples use your head.

Mutations can be good (red hair!) and really bad (horrid diseases! goats with two heads! chickens like this! Kim Jong Il!) Cancer = BAD! A few little wacky cells no one notices, but if a bunch of them get together and form a big round hard or rubbery freaky gross tumor and the GROWTH RUNS AMUCK!!!! ...and the big uninvited monolith starts pressing on other parts of the body that don't want any intruders or need them thank you very much, HELL YES that could cause pain!!!!! 

How would you like a big hard knot trying to grow right in the middle of your shinbone, or press against your inner ear, or a part of your brain that registers pain or is trying to do something worthwhile like see the page in front of you or read my blog? I hope you have balance or walk or think or communicate? That would be beyond pain. 

That hasn't happened to me so I've had no pain at all from any cancer. 

Here's a breast cancer cell:

The thing is with me, is that just a few of those cells, just a tiny bit about as big as a grain of rice got into my lymph nodes, and they may or may not broken apart into little gangsters that are trying to set up shop somewhere else in my body like in my bones or my lungs. That's why I'm doing chemotherapy right now. If one of those sets up shop and gets the cells there to start dividing to quickly it could form a hard lump on my bone that would hurt. Or could form a tumor in my brain that will press against my brain and make me feel sick and ruin my ability to talk or think or walk or live. I bet that would hurt. But right now I have no pain from any cancer.

Chemotherapy is a crude, almost medieval approach. I predict it will be vastly changed in just five years. It's like dropping an acre of pebbles on a playground from 100 feet above to try to kill one stink bug . You bombard the entire body with poison just to possibly find a few rogue cells. 

I found a couple things recently that are interesting. In Italy they hardly use chemotherapy at all and they think that the American doctors are barbaric. Actually have a friend whose father is an oncologist in Italy and he reviewed my case. He said over there they would just do surgery and radiation and then follow up with tamoxifen. However I'm committed to my doctor here and I'm going to go through with this. 

Another thing I found that yesterday is that if you get stage four breast cancer, you can often live for 10 to 20 years by going in every three weeks to do chemo during that 10 to 20 years, EVERY THREE WEEKS TILL THE DAY YOU DIE.  I met two women yesterday who were doing just that. Both of them had ended chemotherapy last January thought they were done, only to have to come back. They had new hair that was to 3 inches long amd looked great. And they're about to lose all that again and keep doing this every three weeks for the rest of their lives. That was very depressing. However that is not me,

How do you feel one day after your second round of chemotherapy?

Nauseous, dead tired, feel gross in tummy and head, no regular pain except mild headaches - like hangover plus pregnancy plus mild food poisoning. On I'm on my third day of heavy duty steroids, so I won't feel super bad until they wear off tomorrow and the next day. I also feel dread and anxiety. Mouth tastes awful. Nice huh? 

What are you up to today?

Resting, hanging around, ringing my new bill from Madeline anytime I want any kind of service, drinking English breakfast tea, eating snacks, watching TV, maybe taking a shower, going to get my Neulasta shot at 1:30, trying not to complain too much, blogging. Trying to get Fiona to get used to my hair, she still won't touch it. Trying to help my motley collection of eighth-graders with the problems in their lives. I am like an every mother, as soon as I gave birth to Violet and Fifi I felt like I was the mother to all of the children around me, and that my children were no more special than any other children. Send me your wretched children, I love children, I also can't stand them sometimes and they drive me insane. There lies the paradox. How to get Vicki and my husband to go to the East Austin tour tonight and go to my favorite store called Take heart and see what are they have going on at the art show there, because I still need a painting for above the bed. Planning to watch some superiorly bad television. Planning to ship off kids for Saturday - pretty complete thanks to Cathy and Adriana! And being pampered by my nurses! 

Chemo two day Thursday November 14, 2013

First off to teach or learn in class today. Got fully made up with lipstick and a tablespoon of Urban Decay in order to offset the ugly globe of distorted continents that is my head right now. 

I gave my students a quiz today on some readings they did - here are some of the questions if you want to try!

1. What is a meme?

2. Gleick (author of The Meme Pool) said that belief in god is an ancient meme passed on through words and also through two other methods. What are they?

3. Researchers say that because Facebook gives you so many day to day intimate details of everyone else's lives - it's similar to a what?

4. Who started Facebook and where? (This was my easy giveaway question!)

I forgot the rest.

The chemo room is very friendly. A lovely women with a beautiful accent is handing out little Whole Foods ginger candies to help us all with the blech feeling:

Here are pictures of me from this morning after the make up spackle event, first without my hat, and with my skater hat from Zumiez skateboard shop. (Never mind that I'm 35 to 40 years older than the ironic Zumiez target audience):

I think it's a far far better thing with the hat.

Fast forward a couple hours and now I'm in the chemo lab chatting away with Vicki and Kris, who brought me a P. Terry's cheeseburger, french fries and Coke. Remember you're supposed to eat and behave teenageriahly on chemo day.

Attacks of tears dripping in. I typed that wrong but I like it. What I meant was the Taxotere is dripping in. I just learned from my nurse Laverne that when patients used to get this horrorshow drip drug in the 90s the victim/corpse would have to receive it in the ICU because it almost killed them. Now "we can manage the symptoms so much better!" Ha! Oy vey.

My view consists of Vicki, reading a Jeffrey Eugenides story in The New Yorker, after she read the article on pot; and Kris doing another smarticle particle crossword puzzle - she's about to take on the Sunday New York Times. She won't share with me, she doesn't believe in doing crossword puzzles together with other people, because she's too smart. I'm bugging her about leaving me out but she doesn't notice I think. Maybe I'm just jealous she can just fill it in square after square.

Today I have two sweet nurses! Laverne is an Austin native and teller of cool chemo tales. She's a sweetie. And Sabrina is as darling as ever though she worries that her Afro is lopsided so we had to take a few pictures. Both are kind to me.

I found out exactly how much of each drug I'm getting - it's based on the square inches of my skin and my weight! Anyway today's doses are:

Taxotere: 134 mg

Cytoxan: 895 mg

Adriamycin: 89.5 mg

On my last drug now. 4:15 pm. Adria. The red devil. My 89 milligrams of hell. It still gives me the creeps. Sabrina has to crimp the tube every minute or so to stop the flow in, to suck my blood back out and look at it in some magic way to ascertaine whether or not it's going into a vein and not burning my skin or my me, before she then continues to push it in.

Now I'm home with some elves helping - Kris is stirring the dinner, Vicki is fussing around the house beautifying it, and Mona is checking on me - and Mike is next to me on the couch - my home for a while. The kids are shut up in their rooms, and I'm feeling steroidally calm and mostly pretty fair. Feels good to have friends and family. So many sweet messages today thank you all.

Feels good

Well today was the day. My hair is gone. Vicki flew in, and when she got here we had a hair party. The kids and Mike and Vicki and I started by pulling. I leaned over the trashcan I let everybody pull out as much hair as they wanted from my head. This reminds me of a pork pull, but it wasn't exactly the same thing. It was more like a taffy pull, or mommy pull. Everyone got to yank out 48,000 tufts of hair. Including me. It was kind of fun.

The little one got freaked out and ran out of the room. 

We then resorted to Mike's clunky old clipper thing that works sort of. I channeled Britney Spears and tried to suavely mow a swatch down a little of my head, it didn't work terribly well. It was very uneven. Everyone took turns going over it many many many times. 

I still have some bizarre patches everywhere. It feels really good though. I have a dolphin ridge on the top of my head, possibly due to my superior intelligence (joke). Kind of cool in an alien-esque sort of way. 

So now I have a few little patches of longer hair, with a bunch of almost gone hair. It feels nice. Prickly. If I rub it in the wrong direction feels like people are sticking slivers of glass into my skin. So I don't do that. 

I'm glad that this stage is gone, and it actually feels pretty good. Not sure what kind of hats or scarves I'll be wearing, right now I'm just letting it be. 

A few hours to chemo, I'm on steroids and all kinds of other drugs so I feel pretty good right now. See you on the other side.

Going going gone

Chances are the next time you see me in real life, I will have no hair. The little hair that I have is departing rapidly to points unknown. Some of it I left at a restaurant today, some of it in my classroom, some of it is down my back and driving me scratchy batty. As you can see it's already much thinner than it was. Scraggly wimp hair is a new life experience for me, one who never sheds any hair. 

I'm turning into a golden retriever, a Shetland pony, a kitty cat. Leaving little bits of myself and trace DNA all over the place. If I commit a murder the detectives will have a very easy time finding a bit of me to analyze.

This morning I got up and washed my face, then I used my wet hands to kind of maneuver this short little haystack of a half hairdo into something slightly stylish. I had a little glop of some fancy aromatic  Aveda gel magic molding brilliantizing stuff, and as I tried to mush this cool white wonderful smelling goop into my hair I looked down and both of my hands were completely covered with browns fur and the little goop of gel was in a little round white ball like a dead Elmer's glue baby covered with fur. Oh the hell with this I thought, and I threw the whole contraption down the drain and just walked out, dripping wet, unstyled, undried, uncouth. 

Slowly I'm having to get used to looking rather, well let me just say rather not like how I would like to look. I'll leave out the adjectives I'm thinking of for fear that someone will tell me to cheer up.

Insanely, I'm actually feeling a little bit more cheery now than I have in the last few days. I think I'm almost getting a little bit punchy. What can I do? What can I do? What can I do? I don't know. I don't know. I don't know.

Leila and I have been emailing back-and-forth poems, or should I say she's been emailing me poems and I've been sending her thanks. Here's one that she put in a comment on one of my blog posts, but since most people don't read them, or at least I don't think they do, here it is again by way of Leila by way of Rumi:

THE GUEST HOUSE

This being human is a guest house.
Every morning a new arrival.

A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.

Welcome and entertain them all!
Even if they are a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice.
meet them at the door laughing and invite them in.

Be grateful for whatever comes.
because each has been sent
as a guide from beyond.

-- Jelaluddin Rumi,
    translation by Coleman Barks

Am I grateful for what is coming in right now? Yes I think. A lot of love and friendship is coming in. 

Here I am with my new thinner, more Spartan, more old lady scanty helmet hair:

And here's an example of what happens if I should run my hands through my hair to, oh, say, scratch an itch or just rub my hair down in the mindless sort of OCD-ish manner that most people do all the time:

If you look closely you can see 1 tablespoon of hair. It's actually kind of funny in a disturbing sort of way. I ate one of my hairs today atop a pizza. I drank one of my hair today in an iced tea. At least.

To recap, for any of you that are following my blog for actual medical information, here's what's happening this week:

Thursday I get my second round of chemotherapy. I will be receiving three drugs, along with a cauldron of steroids, and 5000 gallons of antinausea magic medicines. All liquid, all drip, all shot with a straight shot to the heart right through the wall of my chest. I shall be pierced. 

All of this combined will make me feel rather seasick and like another person who is sitting next to me, while I become actually no longer a person. I will feel slightly one eighth okay because I'll be high on the roid juice for a day or two (albeit sleepless) then the guillotine will fall and I will feel probably sort of like a mouse that you ran over last week, where part of it is in the tread of your minivan. 

However!

A shiny white prince on a white stallion is supposed to be galloping in, in the name of Sancuso (a drug), which is supposed to magically make me feel better. I will be receiving Prince Sancuso on day three after my chemotherapy, which according to my calculations will be something like Saturday or Sunday. I'll let you know if it works. This is all very confusing and other things are happening on specific days too, but I won't bore you with the details of that.

Like:

In the midst of this I will also be getting another $3000 shot of a bone marrow exciting drug, called Neulasta (world-class dumbass name). This $1000 an ounce liquid platinum is supposed to cause an orgy to occur inside of my bones, an orgy of new life and lust and white blood cells that will be spasming and exploding all throughout my bones to bring me back to life. Side effect: a bit of excruciating bone pain maybe. I'll think of it that on another day. All in all this is great news they tell me.

So I am walking the plank. Inch by inch. I get closer and closer to the edge, the horrible dive off on Thursday at 11:45 AM, into a sea of red and clear and clear poison. Hopefully to resurface.

Tangerine

I feel pretty good today, despite the fact that I went to bed last night at about 10:32 PM, and I woke up at 1:01 AM. For the day. I'm not sleeping much right now, I guess it's anxiety, although it just feels like free-floating nothingness. I think I'm really dreading the chemo on Thursday.

Right now the sun is shining, I'm eating a very delicious and tiny tangerine and grading papers while watching Scandal, so life seems pretty good.

My dear sweet friend Vicki is coming from California this week, to hang out with me and celebrate her birthday and deal with me while I feel horribly disgusting. I'm very sorry that I'm not gonna be at my best when she's here, but also very happy that she'll be here with me. She was my roommate for eight or nine years and we used to joke that we were going to get married. I know her so well that I actually remember things like her dreams, and things that she did when she was a little girl, even though I wasn't there, and I don't live inside her mind. Well I do live inside her mind in some ways. Like this one time she had a dream about running along with all these little round pink pigs running in front of her. One or two of them kept kind of rolling up into little round balls, and she was leaning over and kind of patting and rolling them ahead with her hand and singing "keep going little pigs keep rolling!" Or something like that. We both like to remember this dream that she had. 

Anyway you may see Vicki whizzing around in my minivan with me in the passenger seat hanging out the window or something. We've seen each other in almost every way a person can be, and now she gets to seeing me going through chemotherapy. 

Our usual favorite pastime luncheonette time is getting some really good French bread and toasting it, and then making little triangular open faced tuna salad sandwiches, and eating 14 of them each along with grapefruit soda and salt and vinegar potato chips. Will give this a whirl while she's here. She loves to go for walks, too bad she fell in a pothole yesterday and twisted her ankle. She like to fall down a lot, like this one time in California when she was at a little lunch place, it might've even been La Madeliene or someplace like that where you have a tray. Anyway she was wearing a dress and she was carrying her tray full of tinkery tinkley clickety-clackity plates and glasses and napkins and silverware and salad and a drink and she could feel herself about to wipe out so she yelled out "Coming down!" or something. And then she wiped out all over the place with her high-heeled shoes and her fancy purse and her jewelry and her skirt and her lipstick. Vicki kindly ignore whatever things I've told incorrectly about you, and feel free to edit this in the notes below. Anyway hope you'll get the gist of it. And see why I love her so much. She is simply herself. 

Vicki hurry up and get here. She calls me Lima. I call her Victrola.

Today after I took a shower my drain had a little forest floor in it, a little one eighth of an inch thick coveting of blackish looking hairs. A small continent. And my hairdo is feeling kind of sparse like a forest fire forest or something. Should I pull the rest of it out, shave it, clipper it, or just rub it off? When I lay my head down it feels like I'm laying on a prickle bush. Like I landed on Mrs. Tiiggywinkle.

That stuff in my hand there is after taking the brush just one pass through my 2 inch long hair. Kind of gross huh?

Despite all this I'm in a good mood and I'm off to lunch at Austin 24 Diner. See you later.

Sunday

This scarf is from Laura, very pretty.

I think my mood is subterranean dread. I don't quite acknowledge it here on the surface but my body KNOWS what is coming. Deep apathy for life and life sustenance, plus ugliness - in my surroundings and mirror. I'm sick to death of people telling me I'll look good bald - I think that's a bald lie. Speaking of lies I also hear that I'm so brave and honest. What other way is there to be? It would be twisted and demented not in a good Rocky Horror way to FAKE that you were all sunshine and destiny hope about drinking toxic evil juice through an implanted straw to your heart wouldn't it?

 

I do not mean I have no optimism - like in the movies I know this'll end ok, at least this round - it's the blah yuck abyss that I detest and fear, not quite death itself. 

Thursday is coming. Chemo round two and the anticipation is illing me. Do you know I dread it? 24 hours a day? Thursday is named after the Norse god Thor, known for thunder, and lately, for being kinda hunktastic on TV. It's a cool day usually - almost the weekend. No more for me.

Here are some other ways to say it:

• Middle English – thursday or thuresday
• Old Norse– thorsdagr – Thor’s day
• Old English– thunresdæg – Thunder’s day
• Latin – dies Jovis – “Day of Jupiter”
• Ancient Greek – hemera Dios – “day of Zeus”

And a painting I stole from online.

I shall smite the cancer on Thor's day!!!

Ha ha just kidding I'm not that cheery.

Too cranky to write much, let us devolve down to lists:

 

GOOD ITEMS OF NOTE

Got a free massage today with the kindly Susan - I was a subject at an oncology massage workshop. Had to undress naked in a room of 70 people (behind a sheet but who cares) and it was very dreamy.

 

Going to a dinner party tonight with wonderful women friends. Always welcome.

Vicki is coming from Californy to play and stay and take care of me.

 

Food tastes more ok - like 73% normal. Today.

English breakfast tea is nice.

Chaos of teenage girls - they entertain me with hilarity all the time. And my little silly one snuggles me.

Friends are coming out of the woodwork thank you all.

NOT HALLMARK-ESQUE ITEMS - however some of these are kind of funny and then that way they have some positive qualities:

The hair. The hair!!!! Like OMG. If I scratch an itch 37 hairs fly off. If I dassen to do a little style enhancing scrunch - 52 hairs dive out. The drain! Black with wet tiny thin twigs. At this rate it'll blow off in the next gust. People keep asking: When will it all fall off? How long does it take? Will your eyebrows fall out too? And oh no what about your LASHES?!!! And I repeat over and over in a dull voice (for I am a dull boy) "I don't know." Because I don't know. 

Anticipation. Not the Carly one. Thinking about how the dementors will suck and suck and sucubus the life out of me, gray me, and coat my world with a thin sickening veil of oil gray oil in four days is hurting my puffy pink clouds of mood. I'm quite adept at compartmentalizing and I'm employing that skill believe you me you'd maybe not know but my body knows and it's pulling me down. I think I already posted this video but so what. I will put the lyrics too:

 

SWIMMING HOME by Evanescence
Way down
I've been way down
Underneath this skin
Waiting to hear my name again

I'm sorry
Nothing can hold me
I adore you still
If I hear them calling
And nothing can hold me

Way down
(Do you really want me?)
All the way down
(Do you really want me?)
I will hear your voice
(Do you really want me?)
But I'll no longer understand
(No one's really loved me)

I'm sorry
Nothing can hold me
I adore you still
But I hear them calling

I was looking to the sky
When I knew I'd be swimming home
And I cannot betray my kind
They are here - it's my time

I'm sorry
Nothing can hold me
(Do you really want me?)
I adore you still
But I hear them calling - (calling)
And nothing can hold me

 

Days

Not in a good mood. This is bothering some people around me. They are not happy with my not happy-ness. I'm prone to darkness already - the darker the humor the better, for me. So while I def see the humor in my life right now, right now I feel dark.

So I'll make this short and just share some poems I like:

The Darker Sooner

BY CATHERINE WING

Then came the darker sooner,

came the later lower.

We were no longer a sweeter-here

happily-ever-after. We were after ever.

We were farther and further.

More was the word we used for harder.

Lost was our standard-bearer.

Our gods were fallen faster,

and fallen larger.

The day was duller, duller

was disaster. Our charge was error.

Instead of leader we had louder,

instead of lover, never. And over this river

broke the winter’s black weather.

Leisure, Hannah, Does Not Agree with You - by Hannah Gamble

—After Catullus

My house disgusted me, so I slept in a tent.

My tent disgusted me, so I slept in the grass. The grass disgusted me,

so I slept in my body, which I strung like a hammock from two ropes.

My body disgusted me, so I carved myself out of it.

 

My use of knives disgusted me because it was an act of violence.

My weakness disgusted me because “Hannah” means “hammer.”

The meaning of my name disgusted me because I’d rather be known

as beautiful. My vanity disgusted me because I am a scholar.

 

My scholarship disgusted me because knowledge is empty.

My emptiness disgusted me because I wanted to be whole.

My wholeness would have disgusted me because to be whole

is to be smug. Still, I tried to understand wholeness

 

as the inclusiveness of all activities: I walked out into the yard,

trying to vomit and drink milk simultaneously. I tried to sleep

while smoking a cigar. I have enough regrets to crack all the plumbing.

I’m whole only in that I’ve built my person from every thought I’ve ever loved.

Days

BY PHILIP LARKIN

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.