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

The Oncological Menu at the end of the Metastatic Universe

It just dawned on me as I was driving home, for expertise and advice we choose those people with whom who we agree, and more importantly, who agree with our way of thinking to be around us. No matter the circumstance: hiring staff; new friends; the closer of our family members; electing the president; even professional contractors and our mechanic. As human beings our fight or flight instincts can override our critical, logical thinking as a relationship becomes more intimate over time. We might find ourselves arguing and we may even decide to no longer see a friend due to irreconcilable differences of philosophies.

Simply stated: we don’t become friends with people we don’t see eye to eye with.

So why do we remain under the care of an oncologist with whom we disagree on treatment or we cannot communicate well?  This person is the primary decision maker regarding the major decisions and details of how we can fight with the dread disease. They should at the very least talk to us and answer our questions in an understandable way. I mean, if we’re good patients and lead decision maker for our oncology team, and even go so far as to help in selecting solutions as we go along our journeys.  Hell – they themselves wouldn’t have jobs without us, their patients.

So how can we define our role in our own care?  Isn’t it a little like we got parachuted like a soldier out of a plane onto a battlefield? A good patient navigates the terrain for themselves first and foremost. They don’t wait to get told what to do and they don’t accept blindly what’s doled out to them. When a soldier hits the ground hard, they release the parachute and get a view of where they landed and do their best to follow orders but that only goes so far. They have to protect themselves by the very nature of what they’re trying to accomplish.

A good patient will bring their oncologist information they’d would not normally have acces to. If you look at a time limit or a time that is spent with a physician – any physician like an oncologist, it’s just a sliver of time…just a small snippet of someone’s overall life. There’s not a way of seeing the whole picture in their dealings with the patient and they’re certainly not there on a day-to-day basis monitoring everything that’s going on with their patients.

It’s difficult for me to understand how, with so little time spent and only tests results to go by, they can make life or death decisions. You wouldn’t let your mother buy you shoes without your input; why would you let your oncologist treat you with things like chemotherapy and radiation therapy and other therapies without your input?If your mother buys you brown shoes and you prefer black it’s your fault for not telling her you wanted black shoes in first place. She can apologize and take the shoes back. (Although you probably believes she should know your tastes.)

Your oncologist cannot force you into subjecting yourself to chemotherapy. She can’t make you submit to radiation therapy, which like chemo, might lead to more cancer. You have choices but you cannot have a say if you don’t speak up about your preferences. He can’t order an ultrasound rather than a mammogram if you didn’t tell the him that you have very dense breast tissue and it would do more harm from radiation than good from a clear picture.

I am strange case apparently. I just seem to be responding well to treatments that many others haven’t responded well under. And I told my surgical oncologist today why don’t we just pretend that I’m stage IIIB instead of the stage IV? If I were stage IIIB you know I’d be getting metastatic sometime in the near term, right?  Because I’m metastatic, I don’t get a menu of options such as lumpectomy, mastectomy, and so forth because it’s just not in the restaurants in the at the end of the stage IV universe.
There is a tumor board that meets each Friday and  discuss my case as well as many others.  Before I even met with my surgeon he knew to expect my questions, he had heard of my annoyingly legendary knowledge base, he expected me to stand up for myself and ask a lot of questions if I didn’t understand what was going on. I chose to have the lumpectomy. My surgeon knows me well enough now. And he knew if he couldn’t get clean margins in my originating tumor he would push for me to have a mastectomy. I had my lumpectomy two weeks ago.

In my follow up appointment last week he looked at me and knew the answer before he even asked the question – I would say yup let’s go ahead and cut it. He said he said well I’m going to see the oncology board Friday I’ll speak to your oncologist as well as your other doctors and we will all decide. He said the first thing I’m going to do is make you an appointment with the plastic surgeon. We don’t want me walking around with just one boob really leaning into the doubt and says what are you curled call a girl with one boob? Ilene.

But guess what? No mastectomy needed. I can stand tall and straight and sit here and tell you to speak up and ask for what you want. Find the right team to help – ones who will work on YOUR side, not only by the books. The books change all the time and sometimes because a patient asked for something different than the set in stone procedural possibilities.

And be happy this holiday season. Do not forget your nurses and your team and thank them. You’re reading this and they’re glad you’re here.

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 becomes akin to a kitten at a dogfight.

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 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.