Bertrand Russell, Richard Feynman and Me

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.

People like me

People like me

“People like you…”
The nurse practitioner blew her raw red nose into a white, rough hospital-grade tissue. Clearly battling a bad flu, her mouth exposed over the face mask she’d moved beneath her chin, moved for her comfort. Defending a position sitting on a stool with both legs and arms crossed, she spoke at me while spewing her germs throughout the infusion center. The chemotherapy infusion center, where people’s ability to combat anything more than the cancers each one of us came to cure. People like us all prayed to our gods that we’d find a cure here. Some of us, people like me, could only hope to stave off death a little longer through enduring therapies that might also kill us. People like me.
Out of the pursed mouth of this contagious little nurse Typhoid Mary, came words I’d only heard once before, generally mumbled at people like me by men in mullet hair cuts, smelling of cigarettes and motor oil. Of course in the southern state where I’d lived the largest percentage of my life, a constant tug of war between cruel epithets and self deprecating jokes were cracked in reference to my religion – Jewish. Now my long heritage would turn on me again, because people like me, ashkenazic Jewish women are genetically predisposed to breast cancer. The eight tribes long ago set out to populate the earth with too few in the gene pool to wash us clean of this hideous mutation.
Back again my mind wandering at the dull drone of our nurse practitioner- tuning her in as if a UHF channel on my little black and white TV in my bedroom staying up too late watching Godzilla vs. Mechagodzilla. I looked at her as she said, “we don’t operate on people like you.” Blink. Blink.
People like me? People married to a guy named Craig? 51 year old women? Jewish women? People who’ve traveled the world? Who know how to bead jewelry? Whose parents both died in the past three years? Who earned honors degrees in English? Who could talk by the time they were six months old? Who grew up in New York City? Who lived on Miami Beach? Who loved singing? Who swam and were lifeguards? Who have two stepsons but none of their own children? Who love deeply and give compassionately? Who cannot believe they cannot hold a full time job ever again? Who never imagined that a palliative oncologist would become the most important person next to their spouse? To whom do you refer?
“People with metastatic breast cancer, that’s who.” 
“Oh, you think so? Well, you’re wrong. And let me tell you first to please put your face mask on properly so you don’t pass us your awful germs and secondly don’t dare come to work sick ever again. Next, understand that all patients are different, with different constitutions, different kinds of cancers and some of us were even diagnosed at stage IV. And not because we are negligent in getting our mammogram, but because we have such dense breast tissue. And if you’re not a doctor how dare you tell me what you believe my therapy should or should not contain in its proscriptive recipe. You have no right to be here sick or nor the credentials to know what will make me better. I know there’s no cure for me, but I dare say people like you keep people like me from getting the benefit of life and a larger slice of the cancer research pie. So get out of here and you will never speak with me again, because people like me do not need the pessimism of people like you.”
I looked into her now tearful eyes and found no pity in my heart. I found only my fierceness and my tenacity – the qualities of spirit that keep me going even through the bleakest times of my life – and as she silently stood to leave I apologized for upsetting her. But people like me don’t have the time we used to waste on ignorance and behavior that required our patience. My words, blunt, yet sharp like a surgeons scalpel, had filleted out a piece of that thoughtless, careless person who knew nothing about me or anyone even like me.
So people like me, with hormone receptor positive, metastatic breast cancer and some bone lesions to prove it, can get lumpectomies to improve their mortality. We can do things that defy the odds. And we will do everything we can to cling to this light we call life for as long as it will have us. Our beautiful, full and rich lives to which we seek only live and compassion from those around us and we rage at those who speak from a platform of ignorant generalizations.

I am the only me that has or ever will be.
Don’t forget me.

I Judge Myself through Love

I Judge Myself through Love

 

Every morning, in peace and with the new day upon me, I am thankful for receiving all the love in my life. For even the most radical scientists at the end of their physical lives among  us, individually agreed that love makes us human and matters above all else. God, however  you may define the hand that moves the universe, the great architect as my husband calls god, moves us through love. So I share with you my daily prayer, mantra, ritual sayings, reading, or whatever you would choose to call such a thing. It’s words that represent who I am through my strong belief in forgiveness an through forgiveness, love.

Do not measure self worth in the sum of your mistakes,
Nor in the total of your accomplishments.
Do not allow the weight of the past to drag you back,
Choose forgiveness and receive the gift of the present.
You are the sum of all the love you feel,
And love can only exist where there is faith.
To allow forgiveness is to allow love,
The universe’s light and gift to you.

Your spirit gains no interest by receiving material gifts,
Nor by the amount of currency spent on expendable tangibles.
Inflation of the ego does not measure your self value,
Through receiving something artificially expensive.
Become humble through the joy of giving,
And accept immeasurable gifts from the heart with radiant humility.

Do not cause fear in others through shame,
Fear turns the soul into an empty well.
If you look for truth in fear, the enemy of faith,
You then become your own enemy.
Fear extinguishes love,
Forgiveness enlightens the spirit to love.

Fear shrouds insight and blinds you from truth.
The light of forgiveness shines brightly on love.
Sin lives in darkness wedded to fear,
But insight and forgiveness absolve us from sin.
Search for truth in love and spirit in divine giving,
Give way to the immeasurable light of love,
Allow faith to guide you in lightness and in peace,
All gifts of the knowable present radiate,
And then you fear nothing, not even tomorrow.

Inside Out, Outside In

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Pain. Pain of the physical and psychological, and social kinds, became a part of my world as my condition started to define my world more and more. Sometimes, I feel as though I must live with pain, but why? When pizza burns the roof of my mouth, I know the origin of the pain and the subsequent, between the incisors blister. Nothing really mysterious.

Metastatic Cancer makes life mysteriously painful. Allow me to try to describe it without seeming condescending – in general people experience pain via injury from the outside in; MBC causes pain from the inside out. It causes all kinds of discomfort and sometimes the outside in kind meets the inside out kind and that collision of outside and inside makes things exceedingly uncomfortable. However, there’s no reason to feel any anxiety about letting your oncologist know about it. You’ve no need to feel like a hypochondriac when you have a traveling case of cancer. And if anyone tells you you’re imagining things, then imagine life with those who positively support you instead of the negative naysayers. Nothing pisses me off more than a medical practitioner of any kind who doesn’t listen or view the patient as a whole person with lives outside of the hour or less per month they spend inside the office with us.

Palliative care saved my life as I know it today. Palliative care should not carry the connotation of a frightening, stigmatic step before hospice. It’s for our physical and mental well being to keep us from hurting in every way possible. I’m blessed to have my palliative oncologist; I’ll call her Dr. Favorite, since she is my favorite doctor. Dr. Favorite helps me with physical pain through medication and alternative therapy; through talking and knowing me and my situation at home and sending me to therapy to work through my issues and challenges; through navigation of the healthcare system and helping me get the to the right doctors and adjunct therapies; through my fatigue with medication and other therapies such as sleep hygiene and just understanding my body is exhausted and so is my mind. These are a few of the many ways Dr. Favorite helps me. Pain isn’t something we metastatic cancer patients intrinsically must feel because we have cancer. In fact, palliative care means giving us the best life possible while we are able to live the best life possible.

No doubt, I’m a believer in better living through chemistry and have no problem, as I know some of you do, with taking medication to alleviate my intense pain including the allusive bone pain. However, there’s alternative therapy, such as acupuncture and other eastern techniques – one of which I was blessed to receive through Cancer CarePOINT for six weeks called Healing Touch. If you don’t know much about it I encourage you to see your local cancer support group because chances are they have not only heard of it but offer it at no cost to cancer patients in treatment.

Reach out to places where you can find other kinds of support too, because some pain is not the physical kind. In fact it’s pain caused by the daily isolation and by our lives turned 180 degrees from what once was. It’s going to be a long row to hoe for some of us. For some of us. It’s fought on a short path. But I know that no one can really truly understand what it’s like to get up in the morning and hope for a good day only to find no peace, no comfort, no one who understands really what you’re going through, and laying your head down at night with the only comfort of joy that life gave you today was the purr of the cat next to you and it’s godsend of unrequited love for you. To feel needed by something alive.

Here’s a fantastic TED talk on palliative care and Dr. B.J. Miller will blow your socks off with inspiration:

High Scanxiety

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Stila cosmetics doesn’t do very good homework on its pithy quotes on the cosmetic packaging.

With every rising of the sun, think of your life as just begun…

Opening a new palette of eyeshadow by Stila Cosmetics, these two lines, misquoted and attributed to anonymous, I of course look them up in a rapid fire web search. All of one second or less later, the results for Ella Wheeler Wilcox, a prolific poet who died in 1919 comes to my attention. The rest of the couplet based, wisdom filled short poem rang so true and so apropos of my day today.

Headed out for my CT scan and have the usual and very real scanxiety. We metastatic cancer patients all get it as do the cured brothers and sisters when they’ve got to go get a check to make certain the cancer hasn’t spread or returned.

Wish me luck. And thank you Ella for your wise wonderful words. Stila cosmetics – Shame on you for not doing a millisecond of research and giving the rightful citation to the pen who wrote the words in the Wonderful in Waikiki palette. Fix it.

Metastatic World Traveler

 

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I’ve traveled, watched places unfold under me, as shirts from beleaguered cases onto hangers.
Many streets left behind and those right in front reveal a tourist’s gift, unspoken surprises.
Bread, wine, flowers in paper wound in twine grow more beautiful,
As my watch, my time, grows long and further from the terminal.
Immediately, rushing over blocks cobbled and rough on my heels,
I return one last time to visit that old hotel and her permanent residents.
I stop and sit at the feet of Winged Victory, as she spans on her pedestal,
A headless ranking queen of a seedy artists’ hotel, but she’s mad you know…
A lazy outstretched arm where sensuous old ladies and tawdry little blue boys alike come to find heaven.
Some stairs usually leading to a window where I watch the crowds queue into a pyramid below,
I’m startled by a three story single, crowded room overrun by alabaster bodies twisted about, unnaturally.
White, milky skin, robed shoulders, un-uninformed guards so incongruously here for quick fixes.
A crack here, a small nick there, and a careful cleaning before they leave with what they came for –
Each goddess, poet, beggar, thinker, and creature alike, alone under watchful passers eyes,
While new coats and incarnadine daybeds like benches in a park, hurriedly restored for their arrival.
The permanent residents at the Richelieu arm, the medieval cellar, the baroque hallway, the glass palace,
With their cold white and black veined marble limbs and sad sightless eyes return tonight.
Unlike the rich blue irises stolen by the brush of a madman, or still life by
Lenses focused in vein on those bodies waiting, arms hiding their nudity,
Shame replaced their once lively, graceful likenesses stolen by angry hammers and chisels.
Once Royal,or somehow important now they share rooms with boys riding turtles,
Mary Magdalene, the prostrate bodies of beaten soldiers, and lovers’ locked in uncomfortable embraces.
Sending postcards from faraway places, you never did know who I spoke to those days,
When the crowded trains whisked me away to the sounds of your slowing breath,
Rising and fighting falling off for the night, home the cat pushing the phone away from your mouth.
And me with the entire day to find a way to bring you irrelevant souvenirs,
To somehow convince you that next year, maybe next time you accompany me here.
Or anywhere.

Don’t be a Back Seat Driver

My metastatic breast cancer diagnosis in March of 2015 at age 49 did not throttle my world or change it in the ways I’ve read about in blogs and books and in other personal narratives. Instead, my MBC diagnosis changed the way I’d heretofore approached the medical community and the decision process they used to determine my own care, which was delivered to me by way of prescriptions and advice, mostly. I had little say in the matter. In fact prior to my week long hospital stay, I’d only been in the hospital once before – when my mother gave birth to me.

I’d always educated myself on the diagnoses handed to me or to my friends and family members. In fact, on five separate occasions, I disagreed with the doctor’s assessment of my husband’s health issues. After looking at my non-medical amateur diagnosis and the research behind my educated hunch, he went back to his physicians with an alternate diagnosis. One aspect of a patient to which doctors aren’t privy are their daily psychosocial, health, and other important issues that may impact their conditions – for better or worse. Partners, wives, husbands, friends, family usually do not have the opportunity to provide a more dimensional picture of the patient and therefore the physician only sees a single snapshot, including tests, of a patient’s health during the short window of a visit. Every time he re-visited or had a discussion with the doctor regarding my deep research and further assessment of his condition, my opinion was correct.

I’m no doctor. However, what the doctors didn’t have access to was the intimate knowledge of my husbands psychosocial situation, the outlying events, and the ongoing symptoms, which are impossible for them to observe. I sleep next to him. They sleep elsewhere.

Why then do we cancer patients sit back and take what’s handed down as gospel by our oncologists and other members of our cancer teams?

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Simon looks on dumbfounded at my audacity.

As stage IV patients, the end it would seem consists of drug after drug until they stop working and then the painful statement, “there nothing more we can do for you.” Au contraire! And, for god’s sake, never ever tell a tenacious 50 year old, self made woman, “we don’t do _______ on people like you.” On that occasion I’d brought up surgery as an option and that came after many readings and a new study that looked at the charts of MBC patients across decades that found without a doubt that we live longer when primary tumor surgery is performed. Surgical procedures were slowed to a halt about 20 years ago for MBC and the mortality went up significantly. While not conclusive enough and still controversial, I want to deliver this as my story to illustrate why we the patients are the best suited to be our own patient advocate.

Patients must therefore become the drivers of their Oncology Care Team. Back seat drivers don’t get anywhere, they just get annoying. I spent 27 years in marketing in high tech and have written for professional print and online content providers and have now changed careers due to my lackluster energy and bone pain from the mets. However, I love my slowed down life and good husband.