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.

Viruses and Assholes

Assholes. There I said it. You who were too selfish to even comprehend that viruses beg for crowds to strengthen them. The more the better, and you just couldn’t stay put for a couple of weeks to save humanity. 3,000 people in the United States are dead as a result of COVID19, as of today March 30, 2020, or so we’re told. If there are too few people to take hostage the virus will become less deadly because a virus, like a parasite, won’t kill off all of its potential hosts. To survive with less the virus weakens. So with fewer to infect so it can remain alive only far less deadly. Much unlike stupid metastatic cancer, which will eventually kill its hosts.

But such assholes probably won’t die. The ones who will die are the aged and the infirm.

I fall into the category of “infirm.”

I have one of the diseases metastatic cancer along with diabetes, AIDS, and other lovely human killers have repressed the immune systems of the human beings who walk around with those assholes. Those jerks who couldn’t stay home just for the sake of their fellow Americans to avoid such an imminently high death toll.

And the slow burning down of our Economy is their fault, too by the way.

Having metastatic breast cancer means jumping from one therapy to the next until they no longer work. Right now the very Immunosuppressive chemotherapeutic medications ingested into my body to hunt down cancer cells and save me, could kill me. Good luck to me for trying to find a lab willing to draw my blood for the four major blood tests I need to know if the Verzenio and aromatase inhibitors are working and if I’m suffering from liver or kidney dysfunction. Oh and how bad my white blood cell count really is right now to see just how open my system is to this corona virus. I’m not too happy to have been home now going into the fifth week.

I had two telemedicine visits last week with my palliative oncologist and my medical oncologist. My palliative oncologists and I are just in the “getting to know you” stage of our relationship. He’s a great guy, and I hope he lasts in the role longer than the previous four I’ve had at Stanford. I don’t think palliative medicine is still taken as seriously as it should be for those with terminal and chronic illnesses. But what a great time to educate yourselves if you’re at home like I have been.

Dr. B and I had a laugh or two on our call. He’s not as techno savvy as he will be when this is all said and done. I hope for his sake and mine he stays well. He’s in the “aged” category and I am in the “infirm” category so we run similar risks although mine’s a bit worse than his but he was in clinic doing our call. I need some ascites fluid drained off – the new protocol I’m on doesn’t seem to be getting rid of it as we’d hoped. I have a hard time breathing and I can’t button my jeans and the rest of me looks thin. It’s making my back ache where I had the L5 stress fracture in my lower back. That was two months ago when I had my CT scan. It’s showed a slow accumulation of fluid and it needs out. We will try to find a place to have it done but chances are I’ll have to go to the cancer clinic – alone. No use anyone else getting sick if I do.

But I’ll do what I have to to keep myself alive and well as long as I can. Every time Craig and our friend S leave the house they are the only ones wearing masks and gloves. They assure me the looks they get are like two men about to commit a crime. When the opposite is true – those assholes who refuse to take this situation as seriously as it should be are the thieves and crooks. The thieves of lives and the crooks of humanity.

Every time they come home from the grocery store, the post office, or the pharmacy and the occasional trip to the hardware store – we procure most of what’s needed online and the rest we try to buy from local small businesses when and if at all possible – they remove their clothes in the garage to be washed later and shower in our downstairs bathroom. They keep me safe.

I do get out for my walks and for some much needed gardening, too.

Our friend has been staying with us for the past three weeks and knows once he leaves the house he cannot come back due to the high incidence of the virus in the Bay Area and specifically to his neighborhood. He is the opposite of an asshole: the Yiddish word mensch comes to mind. He’s here to help complete what’s necessary to bring our house up to move in ready. It turns out our dream home wasn’t as move in ready as we were led to believe.

So people reading my blog aren’t likely in the part of the Venn diagram labeled assholes. And there’s a few who should stay home or face a ventilator and take a hospital bed away from someone who couldn’t help it, like a nursing home resident. If it was your mom or grandmother I doubt you’d think – well they already had their lives…fill in your own blanks. I know Americans. They love their freedom, but freedom at what cost? The cost is detrimental this time. And to those who least can afford a virus as deadly as COVID19. I don’t care if the conspiracy theorists are right and it was unleashed by the Chinese on an uprising in Wuhan province. I don’t care if it came from Mars. I’m a native New Yorker and I know the venom from the fangs of the rabid individualists. It’s deadly too.

But hear my plea. Don’t, for the love of those you love, take risks on our behalf. Don’t be an asshole. Assume no one can fight off a very strong virus. And don’t assume you don’t have it right now. You might. The massive campaign to politicize this virus is only now becoming apparent. Shame on those assholes, every last one of them. But here I sit, happy in my bath of green tea, macha powder, frankincense, and Epsom salts. I’m lucky to have telemedicine, immunotherapy, people who love me, and a house far from the madding crowds. And if you’ve got metastatic cancer and need to get away for a couple of days drive in and stay. My house is open to you.

But the rest of you – don’t be an asshole. Stay home, please, because this too shall pass and all will be well after the dust settles. I just hope I’m still here to see that first sunrise on that first day we can all breathe in the same air and heave a collective sigh.

PS The photo is of three donkeys who live up the road from us. They look rather unbothered by this fiasco and I take solace in their existence every day they come down by the fence when I am walking by. They see me and trot quickly down to say hello to me no matter where all three of them are at that moment. Craig said they don’t do that when he walks by without me. They come to the fence and shake their manes at me as though they’re inviting me to hang with them for a while. Maybe next walk I will, too. They’re asses not assholes. 😜

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.