Palliative Care Is Everywhere

Today my sister and brother-in-law took a huge risk to travel from Georgia all the way to Northern California. After collecting them from the Sacramento airport, we arrived at the house greeted by my husband and an immanent call with my palliative oncologist from Stanford. He’s a wonderfully compassionate physician. In the specialty of palliative medicine the most important aspects of a competent practitioner, aside from the obvious foundational and ongoing education in their medical specialty, includes all the nuances of compassion and empathy. Can one learn the two most important humane personality traits, regardless of intelligence? I certainly have my theories in the matter: you can fake it but not make it if you’re not sincerely so. And therein we find the art of medicine, the details of human suffering and healing.

Since she’d not met my care team I invited her to join the telemedicine appointment with Dr. H today. As a trained nurse with 40 years of experience, she’d not yet had the privilege of experiencing the graciousness of palliative medicine. And like many people – medical professionals included – she had, prior to my telemedicine appointment, only a vague idea of the importance of palliative care. It’s not simply the path leading up to the edge of a graveside with a bed in a hospice facility as the next place we lay our ailing heads before life’s end. We travel to to that great unknown and universal mystery – death. However, before we reach that great democratizer, we come in and out of pain, feel the side effects of medications and chemotherapies, as well as the psychological hardships that arrive hand in hand with a cancer diagnosis. Palliative physicians see the patient as a whole being and treat us with the tools that science provides them with but in a more nuanced way than a breast oncologist in my case. As a treatment protocol and important part of the health and well being of a patient, palliative medicine in my experience remains a mystery to most, including myself before I entered the realm of the terminally ill. Yet one needn’t be terminal to benefit from palliative medicine either. If you have some time, and I reckon with Covid still thrashing the global population, you do, a worthy use of an hour or so can be found in this conversation between Dr. BJ Miller (yes he’s very good looking) and Michael Lerner, author of the de facto book published by MIT press on integrative therapies. https://youtu.be/5YDbq7vBT-A

Mission: Impressionable

After our hour long video call, my sister connected the dots on her own after asking a few questions and experiencing the interaction between myself and Dr. H. She was especially impressed by his clear respect for me as a human being – gasp! an entire hour of conversation between doctor and patient – and not only a number to rush through a five minute visit with and quickly hand off to a nurse for scheduling and prescription refills. She observed the mutual respect and intellectual relationship we clearly share as “refreshing and very unique.” She added that it was “unfortunate that it’s also very unusual.”

I took some time to educate her with a brief overview of Dr. H’s role in my care, palliative medicine in general, and why it’s so important for the well-being of someone with a terminal or chronic illness: it’s not the step before hospice, although sometimes it is; it’s not only prescriptions for pain, although sometimes it is; it’s not only referrals to specialists outside of oncology, although sometimes it is.

In my follow up to my doctor, I decided to include some photographs for him since he already asked for a picture of my left lower leg and foot because I have another case of cellulitis. We also discussed my thoughts about an ooprhectomy, or removal of my ovaries, so that I might avoid the side effects of hormone suppressing medications like letrozole, which take a huge toll on my entire system. All non targeted medicines are by nature systemic and therefore so are their side effects. He agreed with my assessment of including surgery in my care plan and will discuss it with my oncologist as will I bring it into our conversation during my visit next week. Welcome scanxiety – after my next head to toe PET scan on Wednesday.

Not only lay-people, but medical professionals lack education regarding the roles of each member of an ideal care team in dealing with a terminally ill patient. Not because they don’t want to provide the ideal care, but because those specialties aren’t homogeneously available.

Pass It On

I’ll use American football as my metaphor for sake of making a longer story short. The patient ideally becomes the quarterback position and the palliative oncologist becomes the offensive line and the oncologist is the coach as well as the defensive line. We all work together to battle our way down field to reach the same goal: to have me live as long as possible with the best QoL along the way. The oncologist fights off the opposition, being the cancer itself while providing tests, therapies and other specialized oncologists to keep the patient in the game as long as possible. While we may never win, we hope to get to the super bowl and beat the odds of living 2.6 years from diagnosis. Each year is like a touch down for us. Each time we take possession of the ball without cancer scoring a point and outsmarting our medical strategy is another chance at more time. And if the team falls apart the entire game is over. A good metaphor for how we all participate in the life we pray to extend as long as possible with the best quality of life as possible.

Photographic Evidence

Dr. H asked for a photo of my leg for a baseline of my cellulitis. Of course I sent it using the Stanford MyHealth application that very day. I’ve had cellulitis in the past and my sister’s opinion as a seasoned nurse concurred that indeed that is the correct diagnosis. However I thought I’d send him some more personal photos as well, since he is a very personal part of my life.

The photos consisted of the following: Simon my cat, my mascot, my side kick, my tear sponge and fur baby was in the. Simon follows me everywhere and always stays by my side when I’m not well. There were two additional photos I decided to send: the first from Jan’s 40th birthday (I was 33); the second of us at a wedding in 2014. How time does fly. I was not smoking a cigar in that photo but pantomiming the powerful act of puffing on a heater, as my ex fiancé’s was fond of saying, whose cigar it was, and my way of exerting my executive privilege at that time. In both photos my biological mother, who is Jan’s step mom. My mom died from Alzheimer’s four years ago. Too young… she was 74. Long history there for sure – Jan and I have been together since 1980. It’s been over 40 years. So many lifetimes ago yet like yesterday.

How life takes its great turns and and we walk along along its pathway together and alone, until we must change our direction or take an entirely different road to meet the moment we find ourselves.

Yet, after all, love is all we remember and all that matters as reflected in the photographs. And a life without love isn’t a life well lived, it’s a mere existence and makes no mark at all – I believe love is our true legacy. You’ll remember your vacation but unlikely that week at work you chose in its stead. Enjoy making memories with the people you love. While work seems important to us – it’s not what truly supports us.

Healing Circles

I’ve just completed my training to host a Healing Circle. It’s a sort of support group, except no one gives advice or tries to fix anyone else, and confidentiality is a must fir giving people room to share their truth with the use of a metaphorical tribal campfire as it’s basis.

“Healing is what the person says it is. (Like pain is what the person says it is),” quoted from Michael Lerner a founder of commonweal and its cancer help program, which if you’ve read this blog for some time you’ve read of my effusive respect and through which I’ve found my own personal style of healing.

In healing circles people take take the risk of being vulnerable, just as I do with my palliative oncologist- and this is a very difficult emotional task to say the least. I feel accepted, no matter the content of what I share, no matter the emotion I express. I see his capacity to be truly present and know me as a whole person, and the good and bad experiences of my life. I’m inspired by our talks to express myself regardless of the situation. And in his listening he’s able to treat me with respect and care.

I wish more physicians and more oncology practices included palliative care as a part of the team. I hope you find some guidance in what palliative medicine truly is – not the fear of the call I first received about five years ago when I was first introduced to my original palliative doctor. I was so frightened I was closer to death than I originally thought, but not so. The nurse who called to schedule the appointment was just not adept at creating a safe space by explaining what palliative really meant and that it wasn’t the last stone in the path before my grave.

I couldn’t have been more afraid, but today I owe my health in so many ways to the five physicians who have been a deep part of my life and my healing. I cannot thank them enough.

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.