To my aram cara, who knew this poem prior to its appearance here, I decided to publish its parts as photographs. We may never get a chance to see our images together in a picture. Perhaps one of us hands our phone to a passerby after asking if they’d not mind, “oh thank you so much it means a lot to us.” I imagine we grasp hands, walk over to an ancient wall by the seaside on a lucky sunny day. We’re both in big sunglasses, floppy hats, blonde hair peaking out, bright smiles. Our flowing white dresses bought the day before, when we heard it would be unseasonably warm. It’s close to lunchtime. We thank the passerby and we say nothing and I slip the phone into my backpack. Sighing simultaneously, both of us know the value of that photograph. A dream.
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.
This post won’t leave you feeling good though I hope my words help the understanding of why it’s hard for metastatic breast cancer endurers to get excited about Octobers. As BCAM finally came to a gentle close on Halloween – Breast Cancer Awareness with 30 days dedicated to breast cancer. This year BCAM messaging focused on racial inequalities with access to quality healthcare and new immunotherapy and targeted medications that entered the market. Yet the cancer community only dedicates a single day out of 31 to metastatic breast cancer- one day to raise awareness for 150,000 people who will die. And MBC patients primarily participate in the clinical trials that bring medications from lab mice to human trials to market. Without us, there’d be less innovation and slower time to market and more lives lost or at least more lives damaged by very difficult chemotherapies.
I’m not thrilled with the sexualization of BCAM or the pink-fuscation of the real issues in our lives – my “rosy lunettes” – thank you Moira Rose from Schitts Creek (a must watch avail on Netflix if you’ve not had the pleasure of laughing out loud at least 10 x per episode and laughter is great medicine) – but I don’t know how to say to people that although I don’t look that sick outside, inside I’m a big mess of chemo thrashed and cancer smashed Bones and Organs. And it sucks that MBC gets one stinking day during BCAM. Hey, we should at least have as many days as a ratio of a percentage of people who will get secondary or metastatic breast cancer (40%) .
Unfortunately, 2020’s BCAM found itself rightfully overridden by COVID19 and unbelievably overshadowed by the month leading to craziest election with largest voter tallies in US history. Maybe it’s me but BCAM did not have the same messaging nor the same intensity as in prior years.
It’s a very strange and ugly time in the United States. And the virus doubled down on the isolation and depression that comes with a metastatic cancer diagnosis. People found the right excuse for not visiting or helping those for whom they didn’t even believe were as sick as we were. I suppose COVID19 helped with the guilt and provided an iron clad excuse for not seeing us. Thanks, I appreciate your conscientiousness in not wishing to potentially impose germs on my already overtaxed immune system.
We all die. I know this so please quit telling me everything dies and everyone’s going to die from something. Yes. Thank you for the news flash. The only one I want to see tonight is the election called already for Joe Biden and Kamala Harris (whose historical importance is shrouded in ugly Doritos dust by that fat Covid super spreader who will throw a big tantrum when he is forced to leave the Trump oval tower.) I bet he’s made all the sinks gold like his gaudy ugly Atlantic City monstrosity. But I’m off topic. Blame it on chemo brain.
Who’s Zoomin’ Who?
From a fire hose to a dripping sink, the hours spent on Zoom calls, in virtual conferences, and engaged in blogging, tweeting, and posting our truth have become another of 2020’s strange punctuation marks. An umlaut over the “o” in “you have cancer.” My god. And I did my work with Living Beyond Breast Cancer and our hashtag campaign #fourforstage4 – I posted here earlier in the month. But again, not the bang we hoped for in the shadows of Covid.
My husband says he doesn’t read my blog because it depresses him and he believes it’s about him rather than for him. I live in a completely different reality than he does. The reality of death is no longer an abstract definitive of every living thing born into this world. It’s abstract to the majority of humans and I seriously doubt animals and plants think about their own death because foresight separated us from the natural world long ago. It gave us the beauty of language, of math and of science. Those utterly human inventions that provide us with life-saving healthcare innovations and also kill us every damned day. You’re a smart bunch so I won’t elaborate to the cliff and shove you off to tumble to your fate at the bottom of a canyon on the natural end of the story.
As far as my husband goes, I think it’s more that he’s afraid to read the blog. I’m sure once I die, he will take comfort in hearing my voice in my words. I started writing the Cancer Bus as a gift for him to hold onto a deeper part of his wife as a widower before his time. We’ve been together and weathered many tsunamis since we met 14 years ago this month. We joke that we are still on our first date because we’ve been together ever since. I may bitch about him but he’s a brilliant and funny and a giving soul who’s so interesting I’m still held up by his love and our amazing friendship and trust. Well, most of the time. So trash lightly on the poor sod. No one signs up for this and 50% of husbands or significant others leave their female companions after she is diagnosed with MBC. Half. How pathetic. Only 3% of women leave their significant others – women or men.
Now, four plus years after I began writing here, this blog became much bigger than a long love letter and than myself. And it’s nothing like I originally thought it would be. But the day I heard the words “you have terminal lobular stage four metastatic breast cancer with bone inclusion” I felt like a dead deer in the tail lights of a hit and run driver’s speeding car. They don’t like looking back. The doctors at the hospital didn’t care too much for my kind of hopeless case – the incurable.
But things changed between March 2015 and today. The clinical trials that were well under way like PALOMA 3 and PALOMA 2 – giving us Ibrance and fulvestrant as a CDK 3/4 protocol for hormone receptor positive MBC endurers. This pretty horrific combination of medications added years to my life. I cannot thank those women who gave of themselves to participate in those studies, the majority of whom participated not knowing if they’d survive the trials or of which they’d even reap the benefits.
I’m pretty impressed with myself sometimes but mostly my life isn’t a pretty picture of regrown hair and glowing skin. I’ve taken to cancer endurer given that’s how it feels most days. I endure the pain, the many forms of collateral damage thank you Dr Susan Love, and I endure…my life. We carry on best we can knowing our bodies are going to turn on us sooner or later hopefully later and kill us. But we all pray we are part of the growing small % of stage 4 breast cancer endurers (courtesy of Rudy Fischman) who will live beyond the 2.6 year average mortality from diagnosis. I’m lucky to be here. But it’s not a gift and I was fairly self aware before so I don’t have a happy happy joy joy pink fairy dust farting attitude. I have resilience and humor, hope and tenacity and that’s what I think keeps me going. Oh and I’m in a great deal of denial, but whatever works.
What. Ever. Works.
Resources for Living with MBC from cancerconnect.com
Metastatic Breast Cancer Project: Patients driving research for genetic understanding of metastatic breast cancer
Cancer Legal Resource Center
Connections to advocacy groups
Approved treatment guidelines for metastatic breast cancer
Free downloadable app for organizing and keeping track of appointments, meds, side effects, and more
Insurance and financial assistance
Social network portal