Beyond Awareness: Komen Westchester Metastatic Conference Keynote Address 2019

In November, I was honored to be the keynote speaker at Komen Westchester’s Inaugural Metastatic Conference. The best of my speech is below, and the video of it can be seen here.

The poet Anya Krugovoy Silver, who died in 2018 from metastatic breast cancer, wrote, in her poem Stage IV: 

Suddenly, gloved hands empty the rooms
Of my house, and I’m told
To take only what I can carry.

Faces turn away from me – I’m taboo, now –
The boat I’m set inside is crowded
With others like myself-

They come from their own cities.
Cautiously, we take each other’s hands
And trade stories. We learn

Of the lucky few who return-
Who are able to cross back over.
And in time, their shame

Comes to be known as victory.
We use words that once embarrassed
Us – Courage, Prayer, Miracle.

And always, we long for our old homes –
We draw scarves over our faces when we weep,
Singing the songs of our ancestors.
In this exile, no pillar of dust and fire guides us.

Our passports have been stamped –
Our wrists and collarbones have been marked,
Even when the old promises begin to fall away –
When we see less clearly the gardens
Of our former lands – still, we are together, friends.

We know what our beloveds do not
Yet know. We see through each other
To the lapping silence beyond the Milky Way.

Two years ago today – November 9, 2017 – I was diagnosed with breast cancer. Earlier that week, my husband and I celebrated our fifth wedding anniversary and our son’s second birthday. Not two months prior to that, we closed on our first home, and, finally, had moved out of our cramped NYC 1-bedroom apartment. We had been trying to have a second baby. I was 32 years old. 

A few weeks prior to my diagnosis, during a routine physical, my primary care doctor had found a lump deep in my breast. She sent me for an ultrasound, just to check things out. The morning of the ultrasound, my husband, my son, and I drove to the appointment – my husband and I had, essentially, the last normal conversation of our lives while our little boy babbled away happily in the backseat. 

As the ultrasound went on, the tech went quiet, and brought in the radiologist, who ordered a mammogram, then a breast biopsy. Then, in her dark office, with slides of my breast on the wall, she began to talk to me, saying “I just don’t like the way this looks.” I didn’t understand – what did she mean? The way what looks? I asked to clarify, and she began to fumble over her words, delving into the minutiae of calcifications and dense tissue. The words washed over my head, further confusing me. I asked her, point blank – is this breast cancer? She paused, and looked at me, stunned. Yes, she said, it is. 

I sought out a second opinion a couple of weeks later – there was something that wasn’t sitting well with me about the initial treatment plan laid out for me. Again, within a few minutes after the beginning of the appointment, my husband and I heard more unexpected bad news. The symptoms I had been experiencing indicated that my disease was likely metastatic, which was confirmed the following day via PET Scan. 

When we hear those words – you have metastatic breast cancer – your life as you know it is over. 

I began treatment the week of Christmas in 2017, and remained stable on targeted and hormonal therapy for first year. I had extensive metastases to my bones, but each respective scan was positive, indicating that my disease was regressing. However, that year was not without its struggles – I was put imemdiately into chemical menopause, and then, nine months later, when many of my friends were adding babies to their families, I underwent a total hysterectomy. 

After a year, the disease in my bones progressed, and I switched treatments into a clinical trial. Less than three months into the trial, I began experiencing unusual headaches, which led to a brain MRI, in which two small brain lesions were found. I underwent stereotactic radiosurgery in April to treat the lesions, but the tide of progression did not stop there. My disease moved into yet another organ – my liver, and I was taken off the trial and put onto oral chemotherapy. Unfortunately, this treatment did not work, and my liver disease continued to develop. I switched to another chemotherapy agent, but that drug also failed to stem the progression in my liver. And so, several weeks ago, I started my third line of chemotherapy, and my fifth systemic drug treatment. 

By training, I’m an elder law attorney – much of my law practice was centered around navigatigating healthcare and end of life issues for my clients. Yet, in the time following my own diagnosis, I realized just how difficult, how isolating, and how hard it is to understand what is happening to your own life. To say it can be confusing, overwhelming, unbelievably frustrating, doesn’t even really begin to cut it. I’m accustomed to organizing these issues and making these decisions for my clients, but still found myself drowning. At every turn, I didn’t know what I didn’t know. 

As I found my way in this strange world, I began to see breast cancer “awareness” campaigns in a new light – and, nearly without fail, I began to see how those campaigns failed to include people like me – those of us who are metastatic. As Anya Silver said, “Faces turn away from me – I’m taboo now.” And we need to do better. We need conversations about breast cancer to always  – always – include conversations about metastatic breast cancer. We can no longer serve to punctuate our efforts with the tired label of awareness. We must think about what awareness means, and how to utilize that meaning as a way of furthering conversations about breast cancer, rather than ending them. 

When we talk about awareness, we must talk about metastatic disease. And when we talk about metastatic disease, we need to talk about the sorts of issues – such as the need for collaborative research that focuses on issues such as treatment resistance – the need for the types of collaborative research that will save lives. And when we talk about awareness, we must talk about how each of these categories of understanding affect those of us who are still dying from breast cancer. 

To me, the concept of awareness can be broken down into three categories: education, advocacy, and community-building. 

When we talk about education, we need to look critically at what exactly any sort of slogan, activity, event, or fundraiser, is providing a means to better understand how, and what, information we are disseminating to others. 

When we talk about advocacy, we need to identify how we can amplify our voices to improve the lives of all of us living with metastatic disease. We must talk about drug parity, lowering drug prices and availability, improving standards of care for all of us. 

When we talk about community building, we must recognize the need to go beyond the concept of pink-washing to recognize and understand the nuanced needs of the groyups afected by metastatic breast cancer.

In the two years since I have lived with this disease, I have experienced a lot of moments that, at the time, was the worst moment of my life. Hearing the words “you have breast cancer” – and then, soon after, learning that my disease was metastatic. Being robbed of my ability to have more children. Learning of my disease progression. Learning of my brain metastases. Having to start IV chemotherapy and losing my hair. I had – and have – moments where I don’t know how much more I can take. Moments where I can’t take any more, and I can’t look at my husband and son without breaking down into tears at the agony of my diagnosis, and the thought of not being able to go through life with them. 

Last month, I had, once again, noticed some strange symptoms – this time I had started briefly losing feeling on one side of my face. Knowing that I was scheduled for my six-month follow up brain MRI, I pushed the face numbness to the back of my mind until I no longer had the luxury to do so. When I received the MRI results a few weeks ago, I found a still-worse moment, deeper depths into the crevasse of life with metastatic breast cancer. The newest worst moment of my life, rewritten once again: my disease had progressed into my cerebrospinal fluid and meninges. I have leptomeningeal metastases.

 Historically, this development carries an exceptionally grim prognosis – months, at best. I actually have spent the past week in New Jersey while I received proton radiation therapy to my full brain and central nervous system. My husband and I drove home yesterday afternoon.

I can’t tell you how this disease will continue to play out in my body. Unfortunately, the things we know are not indicative of a positive long-term outcome. I recognize this, and quite honestly, I hope that others will recognize it as well. I often find that, when I speak frankly about these aspects of my disease, I receive pushback from others. It is very likely that metastatic breast cancer will kill me. I’m 34 years old now, and I would like to see my son go to kindergarten in the fall of 2021. I recognize that, statistically, that is somewhat of a stretch. However, I am often told that I need to be positive – and that positive thinking is going to eschew those statistics. I am told to have hope. 

I’m told to have hope. And yet, that hope, that desire beyond reality that the tides will turn – I often whisper the word “miracle” to myself in the dark – does not provide to me that wafer of hope that I need. That hope is a sea-change, the hope to live as an outlier, years longer than my prognosis indicates – often feels like trying to win a down payment in Vegas. It’s not a hope I can hang my hat on, it’s a lot of luck. And the part of what is hopeful about those of us living with this disease is what we do with it.  We have the hope of now, of our individual and collective voices to demand more for ourselves and for all of us living with metastatic breast cancer. I have often said that having breast cancer puts you into the worst club with the best people: some of the most incredible advocates, artists, friends, brilliant researchers, and compassionate, unwavering medical practitioners. 

That group – those people, are the hope that I believe in, the hope that will give me a rope to pull myself out of the darkest recesses of despair with my disease—that this hope is not an idea, or an ideal, but that it is the ongoing concrete actions of those who are giving their time and energy to ensure that we are not alone. It goes past research, past treatments, to the belief that what we can do with the time we have is to contribute to a collective legacy that will make the world better.