In Palliative Care, Comfort Is the Top Priority – NYTimes.com

https://mobile.nytimes.com/2016/02/16/health/in-palliative-care-comfort-is-the-top-priority.html?_r=1&referer=http%3A%2F%2Fm.facebook.com

The Great Dump of ’65

Just listen to me – all of you the dirty, the persuaded:

Sixties life and look and playboy and poker.
Duck-type  ambiguous artifacts,
Yet generally, quite innocent.

Ladies see shapeliness in clouds.
Gents reflected in the recessive genes of ice.
To distribute, simply embed sex and death,
Then fold a mirror in thirds, finally ispect the shadows.
Unnatural suspects, dull without technology.

All vodkas infused with nefarious encoding.
You, Mr. Fleming, showed JFK a spy crazed lusty novel –
How heavily imbued with ties, hats, the red phone, desks, a blonde.
Artistic movements – cubists, surrealists, dadaists and Bucky’s Balls, just as in art or in fact? Three years now.

My words ambiguous enough, supposedly,
Decomposing, blantant but silent. Next door,
Someone defiantly sweats over a project:
Our Outdated Social Misbehavior.
Where it’s coming from is unknown.
Can you even determine a single source?

Spread your arms widely across different domains:
Beer, soda, watches, stockings, cruises, costume jewels.
When the stenographer became involved with some director,
Perhaps she typed for him at an agency,
Married someone in time life’s art department.
Wedded to different agendas,
Maybe a Client.
He may or may not have knowledge of the messaging.
Sample slices of pie and unknown layers of cakes.
Perhaps neither agency nor client got inserted.
Anything by editor or by publisher, either one,
Whose technical spaces could be deserted.

Our lives blacked out, tail blades, suicide,
Doors, 1966 mauled by a dense article.
Kubrick commences the moon shots of 2001.
A reenactment told in photographs of Lord Snowden.
Reinforcement of text strategic commentary for:
“Alcohol consumption”
“Mind altering”
“Subatomic innuendo”
Partially recalling a chance meeting, now
Only fractionally verifiable in print.
No apologies needed,
None taken, none meant.

Crisis Competition

You loud mouth obnoxious woman!

You prompt a scream –

You queue my time.

You pour gas in the stream,

You victimize my crime.

With no context –

No reason no less,

No wonder you press,

Upon my body’s guest.

I reasoned and grieved.

(I killed everyone)

I sewed up the sieve,

I flew near the sun.

I garaged the insane.

I slammed my doors wide.

I fled by the main,

Determined – Denied.

Traffic moves and redirected, 

Wheels crush undertow

God indifferently stepped in

Crushing us under tiptoe.

Who raises their kids?

He pays off the lead.  

Laughing, “god forbid!”

In the tall grass and weeds,

Too late, then adopted.  

Rotator cuffs and helicopters,

Boys master gas lighting, shrugs,

Hold jars fueled by tail light bugs.

Heaving forward for cause 

The Duchess of sad laws

I confused her. Now a kiss?

My burning limbs avail, flailing amiss.

Blue to start healing.  

Yellow as yesterday’s crush.

Red and no closer to sealing

Green islands sail by in a rush.

You prompt me to whisper.

You want to kiss her.

Watch Full Episodes Online of PBS NewsHour on PBS | Cancer immunotherapy has life-saving powers — and limits

http://www.pbs.org/video/2365952106/

Metastatic Cancer: Unemployable and Unapologetic 

Working? Not really. Nothing seems to work. Not me. Not my body. Not my marriage. Desperate and jubilant, isolated and surrounded, frightened and soothed, all on the roller coaster hoping the slow climb up will take forever and not send me screaming on a steep downslope to a dead stop. After two years I feel like I am sitting in a bathtub full of ice cubes when I think about having cancer. In a way it’s easier saying it and engaging in discussions about it because conversations naturally end. My mind loses track of time when I think about things. One of the things I think about is Cancer and the role of the disease, which has taken a full time job in my body. I didn’t hire it. But this new employee of the brand of me I used to be changed and not for the better.

 
I feel like I used to be Coca-Cola then some idiots in corporate decided there needed to be a new me, so like New Coke (for those of you reading who are too young to remember it was a MASSIVE failure and still the brunt of many jokes). Like New Coke, I lost the support of my friends and relatives one after the other, yet finding love in the strangest and most unexpected people, and it’s all a mess. 
I hope for the best, demand the care I need and want, I cry sometimes all alone and sometimes I cry at night when I cannot sleep out of frustration. I cry from pain that drugs can’t touch anymore because of my fast metabolism and built up tolerance.
Sleep requirements have changed, too, although my body always fought sleep so I’ve never slept well. I couldn’t wait to get up in the morning and see what would happen – all curiosity and annoyance to my mother’s chagrin when I was a little girl. Now I can’t get to sleep – and I’ve tried everything. Guided imagery. Meditation. I have a nice aroma therapy machine next to the bed. Changing the position of the bed. Bed toppers with space age memory foam invented at NASA. Hot relaxing showers. Everything, but my mind and body aren’t cooperating. Now I’d make the worst employee being in pain and going to constant doctors appointments and being perpetually late. Thus, I had to change careers and become self employed. My husband is to thank for affording me the privilege to do so as I know many people cannot. I am eternally grateful although I’d feel better about it if his depression would let him accept my gratitude. So work doesn’t even mean the same thing it used to…and I cannot fire this new hire named Cancer punching a clock every day in my body.
“I” don’t work in so many ways. 

My body.

My career.

My punctuality.

My relationships.

My sleep.

My pain.

It’s all so broken. But in breaking things down, I grow. I will grow something beautiful from my wreckage. It’s debatable what beautiful new things will arise from my broken life. I don’t even know if I’ll be living with my husband next year. But I know I’ve survived as well as I can, unselfishly and without too many apologies necessary. I wish I could talk to some people who meant so much to me. Explain why I wasn’t myself over the past seven or eight years. Yet no one needs to explain themselves. We hope apologies will come to people from a place of humble strength. Mostly I’ve come to understand apologies connote weakness to most people.
So I give no apologies. 

“What else could I write?

I don’t have the right.

What else should I be?

All apologies.”

– Writer Kurt Cobain – All Apologies by Nirvana

Bertrand Russell, Richard Feynman and Me

You’re correct – that’s not a picture of Bertrand Russell who wrote this 10 point view on teaching, it’s my meditation mentor Richard Feynman. In my den framed is the Apple Computer “Think Different” advertising campaign poster with Richard. When I am really in a bind, I look at his photograph and ask, what would you do, Dick? Eventually I figure it out and  if I test my conclusions and they are correct then go for it and keep trying  until a better answer comes to me.  He’s been a great mentor. 

Bert’s words below, however,  apply to teaching as well as more life experiences than I can think of – it, too, applies to how I view my own cancer education. I never wanted to be a cancer patient and I never wanted to be a stepmom, but now I am those things and more. 

So for your edification and for the high regard I place on pedagogical philosophy that’s orders above the ordinary, here you go:

1.  Do not feel absolutely certain of anything.

2.  Do not think it worth while to proceed by concealing evidence, for the evidence is sure to come to light.

3.  Never try to discourage thinking for you are sure to succeed.

4.  When you meet with opposition, even if it should be from your husband or your children, endeavor to overcome it by argument and not by authority, for a victory dependent upon authority is unreal and illusory.

5.  Have no respect for the authority of others, for there are always contrary authorities to be found.

6.  Do not use power to suppress opinions you think pernicious, for if you do the opinions will suppress you.

7.  Do not fear to be eccentric in opinion, for every opinion now accepted was once eccentric.

8.  Find more pleasure in intelligent dissent than in passive agreement, for, if you value intelligence as you should, the former implies a deeper agreement than the latter.

9.  Be scrupulously truthful, even if the truth is inconvenient, for it is more inconvenient when you try to conceal it.

10.  Do not feel envious of the happiness of those who live in a fool’s paradise, for only a fool will think that it is happiness.

Thank you Bert and Dick. You’re both very much alive with me every stinking day and I am better for both of your words still available to me when I’m having a crappy day.

How I learned to stop arguing and love this pain

The past 10 days brought what would have been the 76th birthdays of both of my deceased parents and the first year since my mother’s death. My husband started his therapy back up but he’s not keeping with his doctors orders. My stepson who is 18 is on the precipice of failing high school and I came to find out he’s been fueling fights between my husband and I while I’m not around. He also has an upper respiratory flu and I’m recovering from a stomach virus. Yuck. Stop. Enough!

And, guess what? 

Today SUCKS. Yeah! I’m alive. But let us just cut through the bullshit here – I am not feeling well. I’m tired of having to deal with the pain and just sitting here constipated from pain reducing opiates and my mind wandering into a place I try not to let it travel. That is, how much devastation my metastatic cancer causes to my bones every day.  My second off limits discussion that I really cannot remain quiet about: desperate pleas to my husband regarding treatment options for depression – a depression that’s wrapped a cloak of negativity around our house for two years. The third and last off-limits topic revolves around an 18-year old stepson and his unrepentant lying and visible disrespect. Today’s winning bingo card:  the irritability and unkind words that blowback in my direction from my darling’s depression.  I’m drowning in a persistent rain and the hard downpours of Northern California, after a long and devastating drought, reflect my mood today as well as the sharp ups and downs my life seems to take over and over again. It’s either “sadness or euphoria,” to borrow a line from Billy Joel.

Pains and aches take my body and soul through those same sharp ups and downs from having terminal cancer. The metastasis to my bones turns me into a sleepless contortionist each night and the lasting effects of the Xeloda on my nerves gives me neuropathic pain I can only describe as hot pokers and nails rather than pins and needles. From my doctors and my own investigation of metastasis to the bones, I’ll always have a few lesions present, however, depending upon where the initial leisons were found and how much damage they’ve done, there can be a reduction in the number and/or size. Also, radiation therapy in certain areas reduces pain associated with bone mets. Frankly, I don’t believe that it’s a very good strategy to use a treatment proven to cause cancer against cancer. All kinds of cancer. I am fighting a war but I do not think it’s time to type in the code and push the button to release the nukes just yet. Tantamount to singly assured destruction.

Further, as is always the case with forced menopause in ER/PR + and post menopausal MBC patients, a bone “shoreing” therapy is given to the patient. The chemo and hormone therapies can kill the lesions but the bone damage is done, so it’s really important to pay attention to pain, even if it comes and goes because it’s a sign of weakness in structure – especially legs and hips because we put so much weight on those poor things holding our bodies above ground. Standing up from a crouched position makes me look like a 90 year old at the grocery store. People get impatient with me sometimes and I want to yell at them, but I take a calming breath and remind myself they have their own pain that I do not understand, just as they should never have to know mine.

Ingestion of vitamin D once per week and eating lots of high calcium foods like yogurt, supposedly help along with sunshine, of which ironically I can’t take too much. I haven’t gained any weight so I treat myself to ice cream when I want it. Bone mets are not the end of the road by any means but again I’m no doctor and it depends on where they were found and how far advanced the cancer. While over time bony lesions with treatment and luck can mostly go away, but they do damage while they’re laying around like the boneless chickens in The Far Side cartoons boneless chicken ranch. The osseous sticks that keep me strong and upright, are left like bomb trashed countries after a war. There isn’t a Marshall plan for clean up and repair since stage 4 people will just die anyway. The plan, if you’ve got to hang a poster on the wall, is to keep us out of pain as much as possible.

My constant research and reading on topic make me a pain in the ass patient to some doctors, but my questions have resulted many times in a change or an additional possibility. My palliative oncologist once said something interesting to me – that she hadn’t ever worked with another patient who not only knew about the disease and asked questions, but stayed ahead and apprised of new breakthroughs and oncological opinions and options.  

Now if I could just stop having to spend time making others feel better about my illness, feel less isolated and less in pain I’d be getting somewhere. But today isn’t the day. And unlikely tomorrow will be either. It’s my hope that my husband gets it together soon so I can stop thinking about how I would feel living alone. It wouldn’t be better although some days it does feel like it’s what I should do. The pain isn’t going away in my heart. But it’s not time to release the nukes on a nine year relationship, either.
I recall the end of Dr. Strangelove when Slim Pickens rides that nuke as if he’s straddling a wild bronco, cowboy hat in hand, yelling, “Woo Hoo!” as the missile gains speed towards the earth. The ants below have no idea they’re in the direct path of a mistake gone terribly awry. 

Am I on the nuke? Or am I blindly walking to the pharmacy on the ground below, unaware of what’s about to hit me? Only the present moments go by, as time stretches out of my reach again. As a little child I remember asking the adults around me, “where does nothing start and something end?” I meant what’s out of our knowable understanding and beyond the beginning and end of time. My mom contorted her face at my incessant questions. Instead of answers, I received an apple and a boot to go outside and play.

I believe, now anyway, I should finally take her advice. 

Cantcer

I can’t sir. I am not prone tonight to eat heaving and
Sounding out sloppy syllabic English.
Sisyphus gave blood I heard yesterday
Helping out our cause at the five and dime.
When outnumbered run faster, he remarked
Wiping his brow and tossing aside a bead from his neck.

Colors streaking and bleeding while
Ten Red Crossing Guards walked down hill
To deliver us to a corner. Each and every cell
Even at the  coroners. Then cohorts we went ringing
All their bells dying to laugh at elderly crooks.
Well, dear, didn’t we?
Of Main, 1st, Acme, Arapaho.
Why do you even know – tell me –
What neighborhood streets fired off,
Sizzled by before the funerals
Our ages ranged then arranged from
Dead red four two beats and too, too orange ade.
Sleepless? Well, sleep less.

Circadian arcane rhythms in the nacht muzhik*
Dreamless drum beat Heartland 3-1. Who cares
Anyway, tonight its core cooled just enough
Down to the touch networked our fingers enraptured
Engraved in graves for the book of the year  of the  dead
Picture us happy with Sisyphus’ Stoney strain
Upwards, shooting from frozen dreams
Bodies consumed by frequencies
And waves of electronic singing 180 degree miles away.
Off handedly I followed the paths of railway miles yet
So far only the shofar sings in the deserted diner.
I traded a philosopher’s stone for water sieved
Through the mazes etched in the lime of aquifer stones.
100 year contract for signing away, singing and astray
Your dearest routes and longest Rights of way.

*a Russian peasant

Graph Paper Plate

Reference me darling but never laughing. Take cover –
Mine a degree no matter how, brute force? Over
Your walls held up with all your might,
Turned into what’s more – a mere apple bite!

How rich.
On what became my paper you stopped and read
The parallel shelves, my hand tight and contorted.
You joke about Jack knife butter. Open house appointments
See those stems and flower arranged in pretense
We revisited tonight’s closing – arrangements made
Against the odds yet
Strangely discarded.
Sinister and stunned you check boxes and file
Taxes for a bastard, and nobody’s child.
Pop the can open or candle light, who hears anyway?
The fits, the starts an overflowed – which? a film? a play?
You remember I know you do, the one with a picnic,
Grass knolls, university style. The maniac
Stabbing westward onto sunnier valleys.
When on the bright unknown date, ending too early,
Realizing every word you’d written in back alleys.
Fairy tales came via encrypted games, your story
Along the lines of epic but still no corollary.
My words simple as silk, spun all for your love,

My only one. I tease you that one to the millionth is still one, Love.

Cancer: you don’t know shit from Shinola

Brunch. Sex. A drive. Shop for antiques. Take in a movie. Chilly out? I got sweaters and coats! Sex. Nap. Dinner. Goodnight.

That was then.

Get going about 11. Take pills. Put on clothes. Determine whether or not my energy level allows for an outing. Decide to stay home. Make brunch for husband. Sit down. Get distracted. Shit it’s time for bed. I don’t want to sleep yet.

This is now.

Why can cancer cause such considerable collateral life damage? Cancer doesn’t differentiate shit from shinola in a life.  The life delta between pre and post diagnosis  may be the most insidious, least understood variable in all the known cancer literature in the universe. Just as we can not see out into the vast universe with the naked eye, neither can we see into the hearts of those afflicted, though we’d like to think we know what their lives are like.

For stage 4 patients there’s no end to the unseen damage and ugly yet simply passed onto and thwarted changes to their lives. Here’s my little personal list of things you may not see about my works even if I stood naked and shivering in a dehumanizing hospital gown, ass showing, dignity stripped away before you:

  1. My really embarrassing lack of cash. I generally have no expendable income whatsoever and when you ask me to go do something like see a movie I have to think if  I can get cash from my usually negative bank account. Seriously.
  2. My wardrobe changes are for comfort. While I’ve made an attempt to try to become fashionable hot flashes, neuropathy, surgery, and other fun shit like that require layering my clothes, loose shirts and skirts to not irritate painful body areas, and shoes that don’t hurt my chemo made delicate feet, for example.
  3. I do not particularly want to receive every gift in pink.
  4. No I really don’t know what you can do for me but I wish you’d just do anything.
  5. No I don’t know what I really want to do. Really. I wish it were not the case but I can’t tell you what my body will allow for next week either.
  6. I’d love a massage by someone who knows how to deal with bone mets.
  7. I’d give my left uncancerous tit for a long hot bath. We have only one bathtub in our house and it gets used daily by an 18 year old teen boy. No thanks.
  8. Please just send IT. Whatever IT is I am sure your thoughts of me will bring a smile to my face.
  9. I’m not ignoring you. I am at some appointment or I just am tired of talking.
  10. I know you’re not purposely ignoring me either – we don’t have to talk about cancer and I don’t really want to, either.
  11. Yes, I want to hear your complaints about life. Just because I haven’t the same issues anymore doesn’t mean you can’t vent to me. I’m still me.
  12. I’m worried about losing my insurance as we get closer to Trump taking over the country. I’m really scared of this.
  13. If you have something curable and you’re not taking care of it, I totally and completely resent you because of what I am taking to get incrementally better and stay alive.
  14. I still want to be treated like a woman not a neuter.
  15. I WISH TO THE UNIVERSE that I could work full time. I would make a shit employee with nine business days per month dedicated to my cancer treatments, tests, support groups, appointments, not incisive of recovery and bad days and my lack of punctuality.
  16. I hate not having much appetite.
  17. Constipation causes my legs to fall asleep on the toilet.
  18. If I don’t get to eat ice cream I won’t be happy.
  19. If another person tells me to juice or do coffee enemas or I shouldn’t do chemo or I better try ____, they shouldn’t be shocked when I am not there at the end of their monologues.
  20. I don’t look sick. Really? What does stage 4 cancer look like, Sam Spade? I swear if I hear that one more time and get your stupid judgmental look of “aha,” you petty and tedious excuse for a professional private detective working with a medical degree – I will punch you really hard. In the groin. With an anvil.

I want to thank you for sitting through this whiny rant. Now onto bigger and better things.

I have ice cream sandwiches in my freezer. I’m gonna grab one and forget about life for a moment.
Happy Sunday.