While feeling pretty crappy after my first infusion of Enhertu, I came across a “positivity” social media campaign touting, among other things, that Stage IV metastatic breast cancer (MBC) is a chronic disease and then listened to the memorial episode about the death of Natalia Green from MBC on the podcast OurMBCLife. I found myself vacillating between so many different emotions as I attempted to accomplish basic tasks through crippling fatigue. Not a lot of positivity to be found and a whole lot of grief.

As I inch towards my seventh anniversary of my MBC diagnosis in 2017 and experience starting my 7th line of treatment, I find myself experiencing this whiplash more and more. I hear from newly diagnosed patients pretty regularly that they are being treated with “curative intent” and that their teams view MBC as a chronic condition. That positivity campaign featured MBC patients who worked with oncology social workers and therapists to embrace this concept as part of their self care and quality of life. And then I learn of another friend who has entered hospice. Another friend who has died. I don’t count the number of friends I’ve lost to MBC since my diagnosis, that’s a number I simply can’t face.

Natalia Green lived for seven years with MBC before her death last November. Maybe her story hit my heart a little more because I’m also approaching this milestone, a milestone most of us with MBC don’t reach.

I think I would describe myself as a hopeful realist. Every time we embark on a new line of treatment (Enhertu is my 7th or maybe my 9th, it’s hard to know how exactly to count them) we hold out hope that this will be the one that will give me years of stability or even get me to no evidence of active disease (NEAD). I did have some scans that looked like NEAD on one line of treatment. Each time that hope is again dashed, I gather stories of people who have done well, who are living and potentially thriving on this next line of treatment, this next possibility.

But it’s getting harder to hold onto that hope year after year, progression after progression, lesion after lesion, death after death.

That positivity campaign on social media and so many of the people who only project a positive image of living with a terminal diagnosis, many if not all are in the very very very small minority of people who get years and years and years on one line of treatment, often the first one. They are the lucky minority and attempting to extrapolate very limited and specific experiences without balance is a lie and a dangerous one. That lie triggers the desperate hope so many are clinging to and that is crueler than anything I can think of, because that limited experience cannot be extrapolated. The majority won’t have that limited experience, not yet and maybe not ever.

MBC isn’t chronic for nearly all of us despite so many hoping it could be. There are those who get lucky, whose bodies respond in amazing ways but that’s not the story for more than 90% of us (based on my own flawed math skills). Over 44,000 men and women die every year from MBC in the US because it isn’t a chronic disease, it’s a terminal one. Attempting to sugar coat it otherwise does a disservice to every single person in the MBC community in so many ways and that false hope is dangerous.

Hope, real hope, isn’t something that misleads, isn’t something that deceives, it isn’t dangerous, it doesn’t require one to suspend reality and doesn’t ask require anything. Hope, real hope, well, Emily Dickinson said it better that I could …

“Hope” is the thing with feathers

BY EMILY DICKINSON

“Hope” is the thing with feathers –

That perches in the soul –

And sings the tune without the words –

And never stops – at all –

And sweetest – in the Gale – is heard –

And sore must be the storm –

That could abash the little Bird

That kept so many warm –

I’ve heard it in the chillest land –

And on the strangest Sea –

Yet – never – in Extremity,

It asked a crumb – of me.

https://www.poetryfoundation.org/poems/42889/hope-is-the-thing-with-feathers-314