Tuesday, May 20, 2014

Drawing a blank

I'm getting close to the end of radiation, and about to come to my next step in cancer therapy: hormone suppression treatment. This consists of taking a drug to block the estrogen production in my body for 5 to 10 years, most likely 10. The drug could be tamoxifen, or something else if my body doesn't tolerate tamoxifen well. The thing that's weird about all of this is I can't seem to think about it. I draw a blank.

You see, I can't see the future right now. For example, people ask me about my plans for growing out my hair, because they look at me and see that my hair has grown. I never look at myself in the mirror or look at my hair so I don't know what it's doing. I don't know about the hair - I literally don't think about it or care - this experience of having cancer has stripped hair style thoughts away. I don't know how long it is. I don't know what color it is. I don't know if it's straight or wavy. I can't see the hair future - I draw a blank. So I have no plan whatsoever to do with my hair in any way, shape, form, bob, long, short, butch short, mohawk, Little House on the Prairie long, Scarlett Johansson waves, nada, zip zilch, el-nothingo. 

It's not that I don't want to think about my hair or that I don't think I have a future, no, that's not it at all. I'm confident that I have a future, but I'm not living in it.  All I can see is now and maybe a few weeks out. It's not really negative or anything - it's just the way my mind is now. This kind of sounds Buddhist or Zen, but no, I wouldn't equate myself with being on that higher level or anything, it's just a natural shift that has occurred in my thinking. Or lack thereof.

For example if you want to go out to lunch with me or something I can talk to you about today or tomorrow but not much further out than that. I don't want to make any plans. I'm content to just be here minute by minute, hour by hour, day by day mostly. Or actually I'm not content some of the time, but I just am here. Come see me here now.

I've had 16 regular radiation appointments. Today I had my first of the four "boost" sessions today. After those my 20 sessions will be done they say. I don't see that. 

The boost sessions mean that the machine is calibrated to deliver radiation to a much smaller targeted area, with a stronger zap to go to a specific mapped area inside the breast, which is where the tumor originally grew. I had two tumors, so there are two mapped areas. 

This is a special extra boost to supposedly help kill any remaining cancer cells more effectively. Sounds good. I'm not sure what it means. I'm drawing a blank.

Here is what is different and special about the four boost sessions I am getting:

1. Today was boost one. The technicians set up the machine and it shone light down on me from through its little metal teeth that opened specifically into the shape that they would be beaming into me. They used that silhouetted light shape shining down on to my breast to mark where the radiation would go in. They marked it by drawing all around the edges of the light lines shining down on me from god oops I mean machine, with black sharpies, adding a few X marks, and finally finishing their Amy Boob Art Project with a little round clear plastic sticker with its own X written on it. I asked why they did this - surely a multi million dollar machine doesn't need look at a magic marker to know where to go (I hope!). They said they did it for documentation. I suppose this means that if I need radiation later in the future (remember the future is a place about which I draw a blank) they'll be able to go back and look at these pictures to determine where I had it in the past.

2. Once they got that all set up I got blasted twice. Once from straight up above me going straight down into my body, which is the opposite philosophy of the radiation I had been getting (which was breast-skimming for the express purpose of NOT shooting straight in to the body). The second blast is from the side of my body straight into my body, also the opposite philosophy - that philosophy being the idea of trying to miss the major organs in me. Seemed odd to throw out that strategy now. I asked them about why the radiation beams were now going straight into my body perpendicularly, after I'd heard so much about how important it was to go in at extreme angles in order to just hit the blob on top of my chest but without going inside of my chest? I was alarmed to think about the radiation going straight in where my heart and lungs are, which is not good. She assured me that they "try to make it so that it wasn't too deep..." Hmmmmm... They program it so that the x-rays wouldn't go in "too far" or harm me too much. This maybe feel a little bit better. I think. I'm drawing a blank.

3. And in a little fun moment of low-tech retro-land, they then took a little wet washcloth and cut it into a little 2 inch strip and taped it to my scar where my four lumpectomies were. My sliced upon part. I asked about this of course, being the curious patient that I am. (Do they hate me or love me?). She said this would help to "draw the radiation up to my skin." I didn't believe her so I asked for further information. She then said that this wet piece of terrycloth sort of acted like an extra layer or two of skin - I'm still not quite sure what that means, but what I think it means is that the extra thickness of it (it = wet terry cloth = fooling the machine cuz my skin is like a wet washrag? Ok I'll buy that) on the outside of my body would help the radiation slow down more quickly as it was going in so that the rays could focus on the scar area outside more effectively. In other words my tough and gnarly scars are about to get the fuck zapped out of them. That's what I got out of it.
Don't worry the above photo is rated G - that X and round thing is just a sticker.

A curiosity: no matter how much you ask about this stuff ahead of time, no one can ever give you any answers that are very accurate, and you will not know what's happening until you are there and it's actually happening. Or, unless you read my blog I suppose.

Another curiosity: we do not treat human beings as human beings when we treat them for medical stuff. We treat them like little files - a small Manila vanilla file of one symptom ("sprained ankle" or "sore throat" or "boils on the buttocks") or disease/illness ("mumps" or "multiple sclerosis" or "prostate cancer" or "swine flu") or condition ("recurring anxiety" or "auto-immune dis function" or "insomnia" or "irritable bowel" or "horrible personality") but fail to see how these are, surely, interwoven and connected.

The medical community of United States of America in the year 2014, thinks of me as a "cancer patient." So when a test showed cancer in a breast I was sent to a "cancer doctor." But wait - there's more. Actually they did not send me to a cancer doctor - I went to three highly trained specialists:

1. A medical oncologist - the person who gives chemicals -  highly specialized, highly trained, brilliant, expert in chemicals that kill rapidly dividing cells

2. A surgeon - the person who cuts and removes cancerous tissue - highly specialized, highly trained, brilliant, expert in surgical techniques 

2. A radiation oncologist -  highly specialized, highly trained, brilliant, expert in the use of x-rays to kill cancer cells

However - I am not only composed of rapidly dividing cells, cancerous tissue, and cancer cells. The other 99.43% of my body and 87.59% of my mental state is not being addressed.

And I am not sure if the three experts know me, or each other, very well.

Actually, I am not a "cancer patient," I am a human being. Actually I am the one and only Amy Jeanine Larner Adams, born July 15, 1961. The cancer that I have is just part of a long, almost 53-year-old history of events, experiences, genes, nutrition, fluoride, antibiotics, proclivities, personality, chemicals, accidents, geography, ethnicity, luck, exposure, geography, and ancestry. 

Yet I am sent to different specialists for special things, and each of them only looks at one teeny tiny part of me, like opening a door an inch and analyzing and seeing just an inch wide slit of a person but not noticing anything else about them. 

Why? Why? Why? Why? Why? 
Why? Why? Why? Why? Why? 
Why? Why? Why? Why? Why? 
Why? Why? Why? Why? Why? 
Why? Why? Why? Why? Why? 

I'm drawing a blank.

Why do we treat patients with such a short sighted and narrow view of "your alleged diagnosis" instead of as a holistic, complete organism? No, make that set of millions and billions of organisms held together in this thing we call a human? 

I have experienced strep throat, childbirth, depression, dog bites, pleurisy, heart surgery, pneumonia, chickenpox, sunburn, breast cancer, hangovers, anxiety, trips, cuts, bites, stomach flu, anxiety, fractured wrist, ripped knee ligaments, hangnails, inflammation, sinus drip, plaque, dandruff, surgery for a fatty tumor on my knee, a sprained ankle, happiness, burns, drunkeness, sloth, heartbreak, cuts and bruises, car accidents, freak outs, lice, colonoscopies, pelvic exams, tooth extractions, stitches, drugs, braces, migraine headaches, bitten fingernails, fungus in my big toenail, acne, thrush, constipation, sprained elbows, yeast infections, sore joints, irregular periods, hot flashes, anemia, low blood sugar, cramps, backaches, crackling joints, low blood pressure, extreme silliness, dry mouth, vaccines, medications, an avalanche of ibuprofen, greasy hair, myopia (both literal and figurative), plus the average bumps and bruises and colds and sores of life. And much more. Are not all of these things related to each other? In the plantation of my body, filled with millions and millions of bacteria and microorganisms that all work together to make all of my departments function? 

But wait. Before you think I'm throwing all doctors under the bus let me tell you. I know. I know why we function in this way medically. Because. The human body is so complex that we just can't master it. I do believe that what we know, as humans, as the best of our medical minds know - is but a fraction of the universe of complexity of the human body. And I forgive us, I forgive the doctors who are TRYING. 

I forgive you.
I forgive you.
I forgive you.

But still I feel that we can not treat a person effectively until we can understand the interwoven parts of the person better.

In the future, I think we will figure this out. Each person will have a doctor that knows you as a holistic organism, filled with lots of other organisms that all relate to each other. This doctor will take into account your history, your genetic makeup, and how everything in your body works together, how your immune system is affected by the things that you eat or take and the experiences you have, as well as the diseases and surgeries and events of your life. It's all related. It'll be grand then. Not in my life. Future people - enjoy! 

I know were starting to think this way medically, there are so many fascinating books out there all about  talk about diet and yoga and meditation and happiness and depression and how of these things affect every other thing, even life-threatening diseases like cancer. Future people - enjoy!

Yet it's hardly really in practice yet and I find this upsetting. I've been going to hell in a hand-basket over here in the last couple weeks alone, with this weird auto immune system flareup of pleurisy pain that is confounding to my doctors. I have different doctors and nurses at the same place tell me completely opposite things and it's clear to me that they're not talking to each other or really understanding me as a patient. I don't really fault them and I'm not really mad, I think our system doesn't work very well. Literally the other day one person told me to call my general practitioner, and in the same SECOND my phone beeped and another person there told me to get a prescription and start taking steroids. What did I do? Do you know?

I'm drawing a blank.

LOVE ME OR HATE ME
By Lady Sovereign 
(Come over if you want me to play this awesome song for you)

Lyrics:

Yeah,
It's officially the biggest midget in the game.
I dunno.
Make way for the S.O.V.

Love me or hate me, it's still an obsession.
Love me or hate me, that is the question.
If you love me then thank you!
If you hate me then fuck you!

I'm fat, I need a diet.
No, in fact I'm just here lying
And I ain't got the biggest breast-s-s, but I write all the best disses.
I got hairy armpits, but I don't walk around like this.
I wear a big baggy t-shirt that hides that nasty shit.
Ugh!
Never had my nails done.
Bite them down until they're numb.
I'm the one with the non-existent bum,
Now I don't really give a....Ugh!
I'm missing my shepherd's pie
Like a high maintenance chick missin' her diamonds.
I'm missin' my clippers lighters.
Now bow down to your royal highness.
No! I don't own a corgi.
Had the hamster - it died 'cause I ignored it.
Go on then, go on report me,
I'm English, try and deport me!

Love me or hate me, it's still an obsession.
Love me or hate me, that is the question.
If you love me then thank you!
If you hate me then fuck you!

I'm that funky little monkey with the tiniest ears.
I don't like drinking fancy champy,
I'll stick wit Heineken beers.
Whoops, might burp in ya face,
A little unlady-like,
What can I say?
Well oh gosh I'm not posh, me, I wear odd socks.
I do what I'm doing, yeah!
So everybody's entitled to opinions,
I open my mouth and shit I got millions.
I'm the middle kid, the riddle kid,
I'll make you giggle till your sick
Cause my nose jiggles while I spit.
Yeah I do have some stories
And its true I want all the glory.
Go on then, come on support me,
I'm English, try and deport me!

Love me or hate me, it's still an obsession.
Love me or hate me, that is the question.
If you love me then thank you!
If you hate me then fuck you!

Love me or hate me
Love me or hate me

So I can't dance and I really can't sing.
I can only do one thing,
And that's be Lady Sovereign!
So I can't dance and I really can't sing.
I can only do one thing,
And that's be Lady Sovereign!




Friday, May 16, 2014

The geometry of cancer

Yes Virginia, you do need your geometry lessons. Geometry is an integral part of cancer treatment when using radiation because the doctors need to analyze the terrain (your body) and determine literal angles of attack.

In reality the universe has no geometry. --Kedar Joshi

Radiation exits the machine in the form of x-rays which are shot out in a perfectly straight line from point A to point B. They magically go right through almost anything. Hmmmmm...this seems a little suspect because they must not go through every substance in the universe or go on forever - otherwise the x-Ray somebody gets on the other side of the world would travel all away through the earth and zap you today while you're eating your tuna sub at Thundercloud Subs. I better look into this more since I obviously don't know what I'm talking about. 

Back to angles.

X-rays are straight. If the death rays were shot straight down at my breast from above, they'd hit and kill their target but then continue through my body and also zap my heart, lungs, bones, and other useful innards, thus extinguishing my me and negating the whole purpose. Let's just say - it'd kill ya. So they shoot the radiation in from the sides of the breast, trying as best as they can to have the killer rays go through the blob sitting on top of the ribcage...using geometry and art to get the rays to go as low low down to the rib as they can while still trying not to radiate any bone or lung or heart. 

There are several problems to be worked out geometrically mathematically emotionally mythically mentally psychologically though:

1. X-rays scatter a bit - they can be unruly preschoolers and a few may ricochet or freak out and ping pong around inside you willy nilly if they want to and no one knows if or where. So I will have some lung/heart/something else zapped - most likely. What if one x-ray bounces off a diamond chip somehow embedded in my breast and is sent shooting down at the speed of light internally inwardly through my body and it fries a little one celled organism in my gut - the one that was in charge of the probiotic army, the general, and then all the other troops die of depression and my guts explode with rot? Probably won't happen. But what will?

2. When the x-Ray thingy is on my right side trying to hit me at an angle across my cleavage down to exit around my underarm, the angle is so flat (obtuse?) that the rays go through the skin at an extreme angle (meaning MORE skin - imagine a highly diagonal bevel concept) AND they tend to "skitter" across the surface, so that this area gets much more irritated. I must confess, I was glad when the doctor explained this to me, because I was starting to wonder what in the world was wrong with my skin there because it looks dégoûtant as they say in French.

If they wanted textbook example of this they could take a picture of my chest. 

I'm showing you just a tiny bit of it in the picture I post here, I don't want to be too rated R for a blog, a family blog. Ha ha, what family reads this? And I don't want to scare you. The polite narrator.

There is still a difference between something and nothing, but it is purely geometrical and there is nothing behind the geometry. -- Martin Gardner

have just completed my 15th radiation session. Five more to go. I'm getting to know the staff at my radiation clinic, and they are good people. Kimberly always smiles and has the grace to recall who I am every day when I walk through the door. I know I'm just one of hundreds or thousands of patients to go through the revolving door of her life, but to me, she is unique - a once in a lifetime (I hope) radiation oncology nurse. I wonder if she knows how important she is in the minds of the patients that she sees?  

Notes from inside the radiation room:
1. There are no windows in the radiation room. 

2. It is very fridgey cold in the radiation room. Is it part of the mystery of medicine to make the patients so cold and uncomfortable that they feel isolated, and are not warm enough to think very well or ask too many questions? This keeps the patients docile I think. Everywhere I go in this guise the room is out to freeze me. This room is no exception.

3. The door to the radiation room is about 15 or 18 inches thick, and it has scary danger signs on it. Warning warning, and I'm all like yeah.

4. After I have been set up and wiggled about and my bed raised up, like I'm a cheese toast being placed just so under a broiler, the technicians/magicians say to each other "925" in conspiratorial tones, and then they exit the room and close the door. 925 is my special number they say - part of the prescription, the recipe for just me - and relates to the distance between me and the machine. When I hear this I think of looking for a stamp on silver jewelry in 1978 in Mexico City, to prove that it was at least 92.5% real silver. Pure. I'm pure silver.

5. Once the techy people walk out it's lonely like outer space. I'm not to move, even my head, so I can't see around me. I feel very alone. At this point the roomness of the room recedes and I am in an ocean or a tomb or a womb or a spaceship. I am all alone in the casket of the radiation room which is down a long dark hallway in the building, which is in an ugly parking lot set off from the street, which is a long street on the east side of Austin. I'm way inside the Russian doll complex of complexities about to meet the machine. And I'm totally isolated, cold, silent.

Kimberly said she read my blog yesterday and that it was interesting to see the patient's point of view. I told her I was going to revolutionize radiation oncology -  probably not true - but I do have a few ideas. How about if doctors and clinicians took off their shirts and laid bare chested on a table for about 10 minutes while both gendered stranger people walked around and arranged pillowcases on them, and moved their bodies up and down in a freezing cold room while trying to match up little dots tattooed on their floppy non sexual bodies to X-shaped red laser lights that are shooting at them from the walls and the ceiling? That would provide another angle. Maybe they all already do this and I don't know. 

I don't know.

Kimberly has something that many people I've encountered along this way, the cancer way, do not have: the human touch. The last thing she does before she leaves the room to seal me in the submarine death ray chamber, is to put her hand firmly on me - my shoulder or my leg - and say something in a calm kind voice. This is more reassuring than anything. Doctors could learn from her.

I am now starting to not love radiation. 

My friend had 33 sessions of radiation. I ask her about it, as I do my other co-breast-cancer friends. I don't know why some of us have more radiation sessions than others, I think it has to do with the dosage. I may be getting the same dosage in fewer sessions, but I'm not sure. Anyway she said that for the last week or so of her radiation she literally had to wear no clothing on her chest, she had to go topless, so she didn't really go anywhere. Like out. Her skin was actually coming off. It was too painful to wear anything so she lived topless at home, and would just drape something strategically around her neck to cover her chest when she would get a ride to radiation. I am nowhere near that bad yet, but I can see that it might be coming. My left nipple looks like it's melting off of me. And the skin on my mid chest area is horrible. I saw the doctor the other day and she says this has to do with the perpendicularity of the rays.

Geometry.

A figure with curves always offers a lot of interesting angles. -- Wesley Ruggles

This same friend who also had similar chemo as I did, is in physical therapy cuz she had a mastectomy and she noticed that she could barely run without feeling dreadful so they measured her oxygen level on a treadmill and noticed she could not get the oxygen over 96 (should be 99-100). The PT said she should be careful about aerobic exercise because her lungs and heart don't work as well as they used to apparently - and the therapist said "Oh yes we see this after chemo all the time." And she was athletic. Is athletic.

In other words - it's hard to know what all after effects anyone will have from chemo, or when they'll show up, or how long they'll stay. Or from radiation. Or four surgeries. What weirdo effects will I have, what do I already have? What chemical time bomb is ticking or not? What radiated particle will mutate later in a bad way? Or not? Right now I'm so tired it's hard to sit up - is that from chemo? Radiation? Dull laziness? Menopause? Depression? Is it fake? And why is that pleurisy thing popping up? It keeps coming back every few days and I swat it away with other chemistry and tonic. Am I permanently altered? Or looking for excuses for my sloth? All.

Am I obtuse or acute? How do I measure the time of this? How far is the arc?

My Dog Practices Geometry

BY CATHRYN ESSINGER
I do not understand the poets who tell me
that I should not personify. Every morning
the willow auditions for a new role

outside my bedroom window—today she is
Clytemnestra; yesterday a Southern Belle,
lost in her own melodrama, sinking on her skirts.

Nor do I like the mathematicians who tell me
I cannot say, "The zinnias are counting on their
fingers," or "The dog is practicing her geometry,"

even though every day I watch her using
the yard's big maple as the apex of a triangle
from which she bisects the circumference

of the lawn until she finds the place where
the rabbit has escaped, or the squirrel upped
the ante by climbing into a new Euclidian plane.

She stumbles across the lawn, eyes pulling
her feet along, gaze fixed on a rodent working
the maze of the oak as if it were his own invention,

her feet tangling in the roots of trees, and tripping,
yes, even over themselves, until I go out to assist,
by pointing at the squirrel, and repeating, "There!

There!" But instead of following my outstretched
arm to the crown of the tree, where the animal is
now lounging under a canopy of leaves,

catching its breath, charting its next escape,
she looks to my mouth, eager to read my lips,
confident that I—who can bring her home

from across the field with a word, who
can speak for the willow and the zinnia—
can surely charm a squirrel down from a tree.

Tuesday, May 13, 2014

No one knows why

No one knows why.

Anything.

Monday was day 13 out of 20 of my radiation treatments. Friends ask how I'm feeling, and I really don't have a brilliant answer. I'm not as tired as I thought I would be, yet I have no energy. That doesn't really make sense does it? Well hey, that kind of goes along with my whole theme about Dadaism doesn't it?

I'm all over the place. I'm too tired to walk up the stairs but I can't sleep at night. I'm messed up. 

No one knows why.

I am an ironing board. Someone placed an iron on me so that they could prepare the linens for a fancy tea with the queen. The queen of malcontent. The iron is heated to cotton and placed down very precisely so that you can see the sharp outline where its heat scorches.  The edges where radiation is "on" versus "off" are clearly demarcated - as clear as the borders drawn on a map. It's rather fascinating actually. My skin is a map. Apparently they can focus the x-rays very precisely, so sharply that their journey leaves a sharp shadow on the skin, although some of them supposedly scatter and bounce once they get inside your body and ricochet off in heart or lung or stomach or neck or brain directions. I try not to think about that too much. 

My radiation is called external beam. Meaning simply that it is beamed through me from outside me. From a Godzilla sized metal toaster truck continent object. Welcome to the machine. 

Sometimes cancer patients have little tiny radioactive things (Seeds? Astronauts? Ships? Rice Crispies?) actually surgically STUCK IN to their bodies, where the thing sits and emits death rays from within. Kind of like how in Black Christmas the killer was inside the house. Then it's removed. For me I travel to the external beam beamer once a day. It zaps me and then turns off. When I walk out I'm not radioactive. Don't worry.

My treatment is some new protocol test thing where I get lots of external zaps in fewer times than they used to - 20 sessions as opposed to 35 or 40.   Why? I forgot. You think when you get a cancer diagnosis that you are going to continue to sit on the edge of your chair and listen raptly to every single word that falls out of your doctors' mouths when they talk, but what you don't realize is that this is fatiguing and after a while you don't remember much of anything and you don't pay attention. You become kind of eighth grade.

No one knows why.

Radiation is only five minutes a day - or if you really want to get specific it's more like 47 seconds a day. My breast is vibrating and hot and sore inside and out. The actual breast is bright pink, but the skin to the left of it on my chest, the part that showed when I was wearing a bikini back in the 70s looks really awful. I think this must be related to old sunburns from the past - those ignorant years of living a mile closer to the sun while being blond and slathering on orange greasy wonderful smelling Bain de Soleil, not regarding or knowing about sun damage / skin cancer / crocodile dullness. My cleavage et environs is reacting more ouchfully and uglificationishly to this radiating onslaught than the skin that was nestled away behind a bathing suit, because it's already half dead I guess. 

It's not nice, this décolletage skin bubbling like it was deep fried or had kind of bad burn. Or maybe like I splattered french fry oil on it while working at McDonald's topless. Little bubbling red festering blisters. It was hurting enough on Friday that I pulled my shirt down off of my shoulder and held my seatbelt away from my body with my left hand while I was driving, but I think two days off over weekend made that abate. 

No one knows why.

Now it itches and looks disgusting like plague boils - and nothing can be done really. Yes they give you cream. Here ma'am would you like a free sample of some cream? Some lovely all natural cream? Like all other skin creams, I don't think that this stuff actually does anything. I mean seriously. Have you ever in your entire life put cream on itchy irritated skin where it had any effect at all, whatsoever? I don't think so. I think that entire industry is a big fat scam. Kind of like the Tum's industry or the Tylenol industry. Have you ever taken a Tum's that actually made your stomach stop hurting? Have ever taken a Tylenol that actually relieved any of your pain? I call these industries out! Go away and do something else you large corporate boxes full of large vats of useless chemical nothing!

Yes of course it feels kind of cooling when you apply said cream but the same thing would be true if it were yogurt or chilled Jell-O or mud, right? It feels good for 1.3 seconds and then it goes right back to itching like mad. 

No one knows why.

I'm not a doctor and I don't play one on TV but I am stuffing my head with knowledge about cancer. I don't know if this is making me smarter or more scared, but I do love the information so I eat it all up. Radiation is actually one of the most effective (okay let's just say it, it is THE most effective) treatments against cancer that we know. 

No one knows why.

Here's what happens: All of the cells inside and out of the radiated area (read - left boob and surrounding suburbs) will die, but then new ones will be born as the cells repair themselves one rickety molecule at a time. But - the cancer cells won't be able to repair themselves. They are evil dictators, but even an evil dictator has a weakness, and in the case of the cancer cell the weakness lies in the fact that once the dictator takes over, he can't repair his body if he gets sick and dies. No one knows why.

So goodness does win out, just like in Harry Potter, the good cells can repair themselves once they're killed but the bad ones can't. That's kind of hopeful I think. Here's a quote from the doctor about this phenomenon: "No one knows why." I know I just said that but it bears repeating.

No one knows why.

We do have a cure for cancer. They could radiate your whole body and KILL ALL CANCER FOR SURE - except it'd kill you too.

Now it's Tuesday morning, after a long night of very heavy rain that scared Fiona so much that nobody in our home got much sleep till after 3 AM. My radiation oncology nurse just called to say not to come in this morning because the storm made their machine go bonkers.  No one knows why. Well, thank you very much, I do agree that I should not go anywhere near a death ray machine that is out-of-control. 

What should I do with myself today? Today is like a metaphor for my life right now, it stretches out in front of me, both long and short, gray, with no plan or purpose. I feel like a piece of dust floating in a beam not knowing whether to go up or down or left or right or how to or if to stand out or what I am, insignificant. And highly unadmirable. How can anyone admire someone who has lived through cancer and yet feels blah and doesn't feel like doing anything? Why am I not out jogging or getting fit or doing joyful yoga twice a day while drinking kale raspberry juice? Why am I not celebrating one more wonderful day of life when I didn't know just a while ago if I would be living? How have I failed this most basic of all human tests? See...this is the thing: I also "didn't know if I would be living" the day before I heard the word cancer and the week before that and 749 days ago and 22 years ago and yesterday and tomorrow and when I was 17 and 32 and 48 and in ten minutes and every 4th of July and most Wednesdays and during lunch meetings and while walking and weekends and on days because all of us none of us no one knows when we'll die or why. No one knows why. So this cancer experience while disgusting has not really changed me cuz I already knew things are iffy at best and the best things are free and here and now and that's ok. I'm just tired and, well, rather bored with this particular chapter.

No one knows why.

What I like is simply just to carry on with the fun girlitude of life and not revolve around the clogged rotten drain of screwy mutated cells. The kids acted in a play and played in an act and I drive and sing loudly with hilarious teens and this cures.

And we can always read poetry it's free

Spaces We Leave Empty

BY CATHY SONG
The jade slipped from my wrist   
with the smoothness of water   
leaving the mountains,

silk falling from a shoulder,
melon slices sliding across the tongue,   
the fish returning.

The bracelet worn since my first birthday   
cracked into thousand-year-old eggshells.   
The sound could be heard
ringing across the water

where my mother woke in her sleep crying thief.   
Her nightgown slapped in the wind   
as he howled clutching his hoard.

The cultured pearls.   
The bone flutes.
The peppermint disks of jade.

The clean hole
in the center, Heaven:   
the spaces we left empty.




 



Friday, May 2, 2014

Down and out

Been in a fog of pain for three days. It's my old foe: Pleurisy. Here's a description from the website called Healthline:

When you breathe, the tissues that line your lungs and chest wall, called the pleura, rub together. Normally this is not a problem, since the tissue is satiny and generates no friction. However, when this tissue is inflamed or infected, it becomes irritated and swollen. Its texture then becomes gritty, causing extreme pain. This condition is called pleurisy. 

Pleurisy has a grim fame of sorts, for it caused the death of a number of historical figures, including Catherine de Medici and Benjamin Franklin.

You know was idiopathic about having cancer? The thing is that each of us that has cancer, or any disease for that matter, is a unique individual, a set of 70 trillion atoms, a person, an entity, an organism. Unlike any other. A snowflake. We each come with our own unique set of circumstances, background, history, luggage and baggage, and shit. The stuff that makes us tick. We each tick tock at our own rate and with our own clocks.

So there are no hard and fast rules. 

For me, for some reason, when MY body or mind undergoes a lot of stress, its stupid annoying idiosyncratic counterintuitive non-brilliant DUMB reaction is to have pleurisy! It's ridiculous! What the hell!? How about just garden-variety over-eating of Ben & Jerry's Cherry Garcia ice cream or something?

Wednesday I went around in pain, not able to take a deep breath, and with lasers shooting through me, worse  if I would sit down and much worse if I would lay down. Yesterday was the same, although I managed to get around during the day pretty normally. I hid it. Last night this act went to hell in a hand-basket at 1 o'clock in the morning and I was in out-of-control ouch-land and shaking and almost went to the emergency room but didn't want to leave my children alone at home. Hubby was biz tripping.

I hate having to drag around this stupid condition of pleurisy as a response to stress. Why? Because it doesn't make sense and it's a big chore to have to explain this to doctors who look at me and argue, "but this is not related to chemotherapy! This is not related to radiation! This is not related to heart surgery!" Or fill in the blank, whatever stressful thing I'm undergoing the time, "it's just not related!" I am a curious freak. I'm sure that I must be annoying in this way, and that they would like to simply bat me away. I would like to bat me away too, but my body says homie don't play that.

I know my freak pleural pain is not BECAUSE of radiation. I am not trying to argue that. I just want to know what should I do? Should I go see my general practitioner or show up at the emergency room or just scrounge around in my cupboard for old Vicodins and oxy pain meds from when my dad was around and take a bunch of them? That's what I did last night and it worked pretty well, but it's really not that great for carpooling and such. 

This morning from my general's test (bed) I put Fifi in charge of getting the kids ready, and they did, and they got a ride to school with a neighbor, thank God.

I slept till 9:30, threw on some slippers and drove to my 10 am radiation, luckily positioned a mile away. I was mostly clearheaded by that point but in a lot of pain, since the pain meds had worn off a few hours earlier. I looked particularly attractive too I'm so sure.

While there, a nurse, Allison, was kind enough to say hey why don't you stay here while I see if I can find a doctor to talk to you? She saved my day. Yes please. I met with a wonderful doctor at Austin Cancer Centers that I had never met before. He walked in and he was happy and jolly and kind of old-fashioned and retro. It turns out his old stomping ground is Tarrytown, and he used to hang out in Tarrytown Pharmacy were Mike was the manager for many years. He knows my husband, and my husband knows him and his wife. It's a small world. Cue the song. He hooked me up with some super strong pain medication and a short course of steroids, very very short, not enough to mess me up too much. I am now home resting, I have slept through a rock concert and four teenagers screaming and running around all day, but I feel much better. I waited to take the strong medicine until I had safely driven the kids home.

I'm riding this out.

You never know. You never know. You never know what's going to happen and who is going to help you. You just never know.

7 radiations down
13 to go