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
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.
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.
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.