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.

Sloop John B. aka Let Me Go Home

So hoist up the John B’s sail
See how the main sail sets
Call for the Captain ashore
Let me go home, let me go home
I want to go home
Well I feel so broke up
I want to go home
Hoist up the John-b sail.
See how the main sail sets,

I groan as I depart outrunning the Smurf blue scrubs-clad wheelchair engineer who, I’m totally convinced, wants only to embarrass me with one last spin round the rotunda of Stanford’s gynormous older hospital (a new one is on the way, thankfully). Leaving behind me a dishearteningly BORING stay in Stanford’s F-wing. Wow, ever so apropos of the oncology floor, the F-uck it wing, the F-ucking cancer wing. Let me never ever go into a hospital again.

Dehumanized. Depersonalized. Muted. Turned into a brainless pajama bag of pain and shit. Exasperated, exhausted annoyed. Telling the same boring story of how I arrived, my trip through the ER, the amount of fluid siphoned out of my abdomen, whether or not I went poopy in the toilet, as well as my level of discomfort. All told to a supporting cast in this theater of the absurd. All except for my angel in uniform, Stacey, who actually sees me as human and spending more than one shift with me, even requesting to take my bed at assignment time. We talked about everything and nothing, perfumes, children, cancer, other nurses, hospital stories. Stacey stopped by when she wasn’t obligated to do so, and see how I was feeling, to let me know she’d ordered the Flower Bomb perfume I sprayed on her wrists a few days earlier to make sure she’d like it enough to plunk down hard earned cash for it. Like a friend might, she came by my room when she’d heard my ticket outta there had been stamped, to say goodbye. Stacey remained my friend in the hospital for six boring shifts and her big smile, bounty of hair and breasts, and her need to talk to someone who could just ask questions and listen to her.

Basically, and aside from Stacey, at any given time, one might become confused permanently by a troupe of medical professionals, including:

Two doctors, one of whom visited me for exactly three minutes and accidentally ran into me during one of four daily 30 minute cross hospital walks,
Seven distinct nurses
Three nurse practitioners
Two social workers
One psychologist
One spiritual leader of the Rabbinical kind

The same questions day in day out, night after sleepless night…your level of pain, 0-10, 10 being the highest. Where? Which pain? It’s all over and all different. I learned to pantomime and point to my pain, showing anyone who buys a ticket to my freak show behind the curtain. No one likes to stay overnight in a hospital let alone six fabulous nights at the Palo Alto Stanford Hospital Resort and Country Club. Where sleep comes only to those who sleep with the fish, there’s no relationship between yourself and a concept called privacy.

I’m not contagious, therefore my roommates become a series of Spanish speaking, translator required, entire family toting, new treatment guinea pigs under tight scrutiny from the nurses who all ignore me. I’m not part of the program. And but the way why the translators who clearly were trained in translation skills raise their voices with each translated word to the supposed Spanish only speaking individual in the next bed in the room, is beyond my comprehension. I hear both of the roommates, between whom I get one 36 hour reprieve from holding my farts due to close proximity of their family and our shared bathroom.

You want to define understatement? My visible excitement level peaking higher than my pain level for the first time in weeks as I jumped at the first chance to “give up” my bed and an opportunity manage my symptoms at home until my next procedure. Emphatically and resoundingly, please please please let me go home – like The Beach Boys song. For the record, the break in self care and trying to pull my partner out of bed (generally so I could try it out alone for a few hours to recuperate) I needed more than I realized. I fully enjoyed people focused on all of my physical needs for a little while. Pathetic, right?

Maybe so, but I’m home. I got home a week ago yesterday. Simon, my cat-son, truly gave me the what for when I got in, ignoring me at first, but unable to help his nose, which had a mind of its own, from sniffing down my belongings and then coming over to sniff me. Persuaded by sight and scent he crawled into my lap and purred and I rubbed by now-damp eyes in his soft brown fur, and said, Mommy’s home, baby, mommy’s home.

Now that’s pathetic.

Canferatu, The Monster at My Door

WARNING: I’m going to bitch a little. Maybe a lot. I admit, I’m in pain of several kinds and with facing #chemotherapy again, and the evacuation of a total of 10 liters of ascites  fluid from my abdomen adding 20lbs to my stomach and causing my body not only discomfort but all kinds of fun side effects including severe constipation. Ascites meanders through the abdominal cavities, which fill up with the remains of a body’s lubrication in the peritoneum, leaving less room for the organs including the intestines. See the container of yellowish fluid above? That’s one of four two-liter bottles removed from my big round belly three weeks ago. Additionally, I had four and a half more liters removed yesterday.

My body had enough room for food for first time in three weeks, long past a bad case of being “hangry” (hungry-angry). My prescious neighbor and dear friend Lisa, made me simple soup of chicken broth and won tons. The hunger with which I ate it rivaled Henry VIII mauling a turkey leg as he’s so often portrayed. I’m feeling like total shit right now, no pun intended. I feel physically and emotionally wrung out. I appreciate your patience and please know I do not mean to condescend: I’m just kick off my big girl shoes and put on my fuzzy slippers and whine.

#Stage4cancer brings to mind a place a B movie might portray, as you’ve probably noted in some of my other pity party posts. In my latest film, my 1960s MST3K worthy vampire hell ride, Canferatu. Canferatu is an inescapable, slow yet fast paced vampiric monster approaching magically everywhere I turn. Chills run down my spine as I hear the ugly abhorrent thing rapping, scraping on my door. I realize it’s only the wind picking up, frightening me as a tree branch runs its claws along the windows of my imagination,

Am I dreaming in color of the darkest places my consciousness has to offer on tonight’s mind menu? No. No horror film, no inadvertent wind blown tree debris, and definitely not a B movie. Reality sets in at some point between, “are you fucking kidding me?” and the desert test of an atom bomb blowing up underground and taking out a life I once knew. A life defined. One with possibilities of working full time, seeing friends, hearing from family, trips and travel, and a whole lotta love. As unsalvageable though your existence may feel at this very moment – if you don’t have stage 4 cancer consider all systems pretty good, if not fantastic!

I feel awful when I can’t feel much empathy for people with controllable, curable diseases who do nothing to seek out readily available medical attention. Even when the hands of help reach out to them to provide everything they require to find a healthy self, they choose to lie down in puddles of self created doom and pity. As I approach the diagnosis’ three year mark at stage four, I become more hardened to their plights. An empath, I know that their pain is very real pain. I know it’s as real as the device you’re reading my post on, yet I see possibility and hope. Depression and anxiety sufferers see darkness visible. As I scratch and scrape to stay alive and keep Canferatu from sucking me dry, my partner has the audacity to pull at my heels and bring me tumbling down with him into the black box he lives in day after day. And night after night without so much as a kiss or a hug anymore.

It all feels so very unfair. I want to make it all just stop because this simply cannot be real. Like Canferatu. What kind of unique inequity caused these circumstances in which I face my end of life head on while he faces his future head down? For three solid years, I represent the root cause of every single one of his problems. These days I’m overly embarrassed to even suggest sexuality as a topic to discuss. Who would embark on a talk to let him know how I don’t want my end of days bereft of human touch?

When my psyche owns up to having grace enough to know when to get off this crazy thing, I will, but I love him enough to have hope and to stay.

There’s days when his light comes on and his blue eyes sparkle and shine like two stars in the sky. Come on you, just wake up and shine with me for a little while and let’s shut this nightmare down. Coupling up begins, but never ends, with sex. Love in all its permutations requires an orchestration of high and low and mid range notes all syncopated in time, day in and day out. However, there’s a time not too far away when the cortisol highway in my body caused by the stress of this heinous cloud raining down on us both will end, as highways all must. I’ll have to leave him sitting here alone. If he refuses to seek help he so desperately needs much longer, I’ll miss him, and I wonder if that heartbreak is enough to cause a whole new cortisol highway to open up, allowing my cancer to take me over and cause a horrible, unintended wreck.

Does cancer extract my heart from my body for study by science and remain in a clear beaker like the one holding the ascites on some dusty shelf behind an outdated computer book from 1999? My loneliness and frustration are at an all time high. Can you tell? No, I have nothing he can gain from and to his mind, all he does is give and I cannot bring anything worthwhile to the relationship anymore, so why don’t I stop fucking up a good thing and just shut up?

Okay.