People Like Me

Oh, I’m tired of being home and afraid my immune system won’t fend off COVID19 or symptoms that can rob me of my metastatic terminally ill self. I decided after overthinking this post I’d relate an event that occurred about a year into my dirge towards death. A countdown -or would you call it a count up to the number of days I have left in this body that carry’s my soul from place to place, night to day, breath to death? Here’s a chapter in the last five years I call, “people like you.”

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 this contagious little Typhoid Mary of a nurse, 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,” in this case ashkenazic Jewish women, are genetically predisposed to breast cancer.

We have the honor of carrying the BRCA Genetic Mutation discovered in 1996 when the human genome was mapped out. There were eight original tribes who long ago set out to populate the earth with too few in the gene pool to wash us clean of this hideous mutation. Those who migrated to Eastern Europe were called Ashkenazi. Seems the diaspora spread us far and wide but not far enough .That and the environmental stressors on our bodies in the post industrial world created a perfect mix – just add hormones like estrogen and a first or second line relative with breast cancer…

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 at eight years old, alone in the dark 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 in which we seek only to live and find compassion in those around us as 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.

My Bi Monthly Cancer Wellness Survey

If someone handed you a clipboard with a survey attached regarding your “wellness” today, how would you respond? Doing my best to circle the closest answer to each inquiry using various rating scales, I hand the one-sided piece of paper sharing all my hopes, dreams, pains, and happiness to one of two nurse practitioners. Neither can truly comprehend the fitness of m6 mind and body by grazing over my confessional. Worse, they seem as uninterested with a quick flick of the wrist it’s tossed on the exam room counter, after it’s removed from the clipboard. I believe I spotted an eye roll of cynicism as I sat watching for an6 sign of interest on their face.

As always I inadvertently misappropriate the ballpoint pen on temporary loan I really don’t need, given my penchant for purchasing an embarrassment of redundant office supplies, to fill in the survey: “YOUR WELLNESS: how well you feel so your cancer center staff could attend better to your needs?”

The Stranger
Immediately an Existential crisis ensues. Such questions provoke an intensely dramatic Shakespearian-Hamletesque- “to be or not to be” soliloquy of the mind, or just plain thought vomit. Hopefully I don’t puke all over the page as I must determine the scale on which my most important stressors exist including appetite and nausea. For instance, rating my ability to think and judging during this particular day a level of satisfaction with my relationships? Seriously I think it’s not cogent at the moment, but I answer evoking my centrist point if view, since going too far right means I’m really angry and headed too far left means I’m going insane with happiness. The middle answer for the question is “sometimes.” Makes sense I suppose and I do not need those prescriptions adjusted.

Also I’m pursued by this paper chasing mind stalker to rate my current pain level. Do you mean right now? This morning when I got up? In general? If they mean at that moment right then or that just passed while I’m filling out this supposedly innocuous survey of my overall well-being? It’s giving me gas and a bit of acid reflux, plus this pen is really crappy for a nice place like Stanford and gives me a hand cramp that won’t let up due to neuropathy. (Note to self, donate nice pens for metastatic patients to lift in my last will and testament.)

What does it all mean?
Now the real kick in the ass – how I rate the meaningfulness of my life on a scale from excellent to poor, my activities in my home, social life, and community rating from completely to not at all. Two specific questions require an essay by Diogenes regarding cynicism and stoicism but there’s no blanks for open form answers. If you’ve read my posts you’re thinking the form might require five pages of addendum to control my verbosity. The questions in question:
My life lacks meaning?
Irritable, anxious, or depressed?
Rated from “never” to “always,” and “sometimes” the middle ground, on this particular day, I circled “sometimes.”

Sometimes my life lacks meaning for reasons such as my usefulness to society in general, to my financial stability, to my husband, to my friends, even to my customers in my Etsy shop – shameless self prhttp://www.yeuxdeux.etsy.com – should you want to do some holiday gift shopping from a very small business that directly supports metastatic breast cancer at the grass-roots level.

The purpose of consciousness might be as simple as love. Therefore we are all here to bring each other joy through love. And I firmly believe love is our purpose. What if, as imperfect as we are, we can achieve a clearness of mind to allow our thoughts about people to fall away, and rather than judge them love them instead? Wow! the joy we could feel if we lived without those thoughts, and the love we truly feel could comfortably be shared even further than inside the doors of our rooms.

Try a little tenderness.
Experiment with the following: show a little love to somebody you don’t particularly like today and see how your whole attitude about them and yourself changes in an instant. Perhaps, you can love yourself a bit more, too. But don’t give them a satisfaction survey when they’ve been loved sufficiently by yours and their agreement, because you’ll lose the squishy warm feeling of human interaction to the marketing puffery even taking place in your personal brand study.

Cynical? Nah.

 

 

Are you on drugs, lady? Or, is Walgreens new policy to fill only judgement biased prescriptions?

The Who – The Real Me – Quadrophenia
Love didn’t reign o’er me that day at Walgreens’s drive through window, but a pharmacist predisposed to judge people based solely on a list of prescriptions rained down on me with a very ugly realization.

Context is King
Our perceptions of other people when we lack personal context, especially someone you’ve just met, can be jaded by situational circumstances. To prove my hypothesis, I’d like to try a little experiment in sociological phenomenology (a fictional new branch of anthropology) With no Amazon gift card to intice you, please participate in my no-paper-or-pen-required field test, for the sake of pseudo-science or better yet, to help argue my point using logic and reasoning.

Here goes: read the following list of medications and think about your immediate impressions of a person who uses these every day:
Adderal
Dilauded
Valium
Morphine

Test Your Perceptions
Now hold your prescription perceptions of that person in your mind. What does he or she look like? How do they act and what kind of morals and personal values do they have? Are they capable of illicit or even illegal acts?

Now, here’s another piece of information about this person: they are on Medicare and social security. However, they look too young for such social services and furthermore not very sick at all.

Now hold that image and add this concept in your mind – Is she scamming the system? Lazy? Have you read or watched news stories about drug addicts who buy and sell prescription medications? About criminals stealing from social agencies meant to help the aged, the infirm, and the critically ill? They should be in jail or at least in drug rehab for opioid addiction, right?

So, you have your current picture of this person firmly in your mind based on some pieces of factual information but knowing nothing else about them at all except they are female, about 50-ish, driving a late model Mini Cooper. Now, certainly your perception of her changed based solely on this new information about gender, age, and the car she’s driving. You do not know if it is her car or borrowed. Do you assume it’s her Mini?

Now, I’d like you to add the following medications to the list above and tell me how adding contextual medications for stage four breast cancer to the list changed your perception of her:
Ibrance
Faslodex
Xgeva
Xolodex

Different? Of course. Pain, fatigue, and anxiety all go hand in hand with stage four metastatic breast cancer. What do you perceive of her now without your logical fallacy rendered false by new information providing context that you did not have prior to understanding her medical condition? Completely different I would imagine.

Here Comes the Judge
On this basis, Walgreens pharmacy can kiss my skinny Jewish ass. After receiving a slew of text messages regarding my prescriptions, their readiness for pick up, and questions about why I’m not over there receiving advice from my local Walgreens pharmacist, I head over to the drive through. I’m saved by small favors of a drive through pharmacy down the street especially after an hour long colonic with my intestinal angel, Lisa.

At the Walgreens drive through that day, new staff I’d not seen before had taken over for the former day pharmacy crew, who all knew me by site and didn’t need me to repeat the spelling of my first and last name five times slowky, please. They knew why I’m taking an onerous list of 11 medications prescribed to me monthly for my cancer and chemo side effects as well as my other medical conditions. They did not judge.

A Logical Fallacy
Judgmentally and silently to the outside world, her poorly constructed argument against her own internal monologue, used a logical fallacy. It probably goes something like:
A. All customers who pull up to the drive through pharmacy window are lazy.
B. Users of opioid-based pain medications are all lazy prescription drug addicts.
Ergo
C. If a list of a customer’s medications includes opioids that are not quite due for refill, she is lazy and therefore a drug addict who shoukd be arrested on the spot.

As my list of prescriptions were read aloud over the outside speaker for anyone within earshot, I felt my face get warm and red and not as a result of a hot flash. The pharmacy assistant’s snotty attitude grew as did her pride in redressing me, the criminal. Reading off my medications like a drug crazed wish list, it may as well have been the voice of the prosecuting attorney wrapping up the case as though I were going to be indicted by a grand jury for trafficking in illegal substances. She looked down her nose at me in my Mini, disgusted, and with a shake of her bobble head, her down cast eyes said, “addict.”

She did not bare in mind I’d told her what meds I was there to pick up. None were of the schedule 1 type requiring an act of what’s left of Mein Trump’s cabinet of fools. Talking over me as I tried to explain about the text messages and how I wasn’t expecting any of those medications for another two weeks, I knew there wasn’t a way to get through to her. She allowed her perceptions to paint a preconceived picture of people she’s afraid will get her in trouble with her supervisors or worse, fired. Everyone whose physician prescribed these drugs for immediately fits the profile. Arrest us, please. It’s better then hearing the rants of public lunacy and the angry mob running after us with maltov cocktails flaming proudly in their raised hands.

She argued over my interruption of her tirade and she kept on with her fear driven illogical argument with no response from me or anyone else forthcoming. There was nothing to say except to please get the pharmacist and that I refused to be served by her ever again in the future and that she may want to review the file she’s reading to see that it clearly states I have stage four metastatic breast cancer. How dared she?

Can You See the Real Me?
I slipped from not thinking too much about cancer that day to only thinking about cancer the rest of that day. I thought deeply about this woman judging me based on perceptions without context. I’m learning not to judge people based on what I see, because there is so much I don’t see. So little I know about anyone. So expecting them to notice what I need or my definitions of how they should act is as preposterous as her judge, jury, and executioner style of customer service.

We have an opioid prescription medication epidemic in our country getting worse by the day and leading to deaths by overdose amongst other ugly preventable causes. Does this mean it is impossible for a responsible adult with terminal illness to peacefully pick up her prescriptionsand without fear of embarrassment or harassment? I’ll let you the judge. I’m not impartial.