Outliers/Unicorns/Exceptional Responders/Outliving Statistics

This post is a follow up to the one I published last week on the 6th anniversary of learning that I’d had Stage IV Metastatic Breast Cancer (MBC) from the beginning (a/k/a de novo). You can read that previous post here. Based on some of the feedback and comments from that earlier post and other conversations I’ve had recently, I wanted to further explore this idea of being an outlier, a unicorn, an exceptional responder and outliving the statistics that can be a gut punch.

Many of us who are diagnosed with Stage IV Metastatic Breast Cancer (MBC) are given some information as to longevity at that first appointment or perhaps later on in our treatment. Generally, those of us who do not have triple negative disease are often told that a life expectancy of twelve (12) to thirty-six (36) months from diagnosis is what to expect. There’s some evidence that those people who have bone only disease may be looking at approximately ten (10) years after diagnosis, something I held tight to until the cancer spread to my liver in 2022. Other articles I’ve seen places the percentage of those who live more than five (5) years at around 22-28%. If you want to read more about this, here are some articles that might be helpful:

• https://www.cancer.org/cancer/types/breast-cancer/understanding-a-breast-cancer-diagnosis/breast-cancer-survival-rates.html
• https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6305243/
• https://www.cancer.net/cancer-types/breast-cancer-metastatic/statistics
• http://mbcn.org/3957-2/

One of the things I’ve struggled with a lot over the past six (6) years of living with MBC is understanding how to apply statistics and data to me personally. As individuals, we are not statistics and when articles and statistics are published, the data refers to a median or average across many many different categories. Unless specific cohorts or groups are broken out of the larger statistics, some of this information is just not helpful. We might fall into the trap of expecting time on a particular treatment because that’s what the median or average is when the truth is that we’re all so individual, so unique.

For me, now having living a bit beyond some of those initial statistical likelihoods that exploded my life in 2017, I’ve learned a little that I’d like to share:

• Not to Compare. It’s so easy to compare our experience to others and think we know what to expect. I spent a lot of time and energy down the rabbit hole of other’s experiences thinking that would help me understand what to expect during a few of the initial lines of treatment. It does help a little having information from other patients, not just the often lengthy lists of symptoms or side effects we get from our team or the companies that manufacture the medication. But there’s no one size fits all solution or struggle in this MBC experience and comparing ourselves to others isn’t productive.
• To Pace Myself. In the beginning, it felt like MBC took over my life (and it did) and I thought I needed or should stay in that space. But there are often long periods of time between treatments, between appointments, between scans. Living our best lives outside of cancer, I’ve found, is still really important and our families need us to lift our heads out of cancer at times and just be us, with them. Prioritizing time with my family and pacing myself in terms of advocacy and entering into the MBC Community has been key for my own ability to continue to pour into others.
• To Accept Help. This has been a double edged sword for me. Prior to my MBC diagnosis, I’d trained most of the people in my life to accept help from me but not to give back. When I’ve needed help, I’ve struggled to accept it. Balancing my need for help with my reticence to accept help and how that gets more complicated over time hasn’t been easy. Here’s the thing — those of us living with terminal cancer need a lot more help than most of us are getting and it’s hard to admit that, hard to see how we’re not the same person we were before cancer.
• To Give Others Space. In light of the various leadership things I’ve been involved with, I often encounter people who are newly diagnosed with MBC and/or are new to being open about their diagnosis. Welcoming and accepting others into the MBC Community and adjusting to how everyone does things differently can be a challenge at times. Knowing how important it is for everyone to be involved to the degree they desire keeps me coming back, but it takes a lot at times to lean into relationships when we know the ending.
• Use Grief as Energy. The longer I’ve lived with MBC, the more grief there is. We have to grieve so much about the changes in our lives and the many many dear friends who begin to truly struggle and then die all the time. At first, those feelings paralyzed me and I pulled back (a rather typical coping mechanism for me) from the MBC Community. What brings me back every time I do take a step back has been the connections with others. Even though every loss is devastating and every dear friend who dies takes a piece of my heart with them, that grief, that loss also gives me the energy and the focus to keep advocating, to keep speaking up.

I certainly don’t have all the answers and much of what I’ve written above may only apply to me. What I think is so important is to continue the conversation, especially when we find ourselves out of step in some way. I’m figuring this out as I go along, as are so many of you, I suspect. There is no blueprint or one way of doing this living while dying thing. What we can do is leave a path so that others may follow if they choose and the more paths illuminated for others, the better.

I want to close with what might be a controversial subject. As many of us with MBC do, I often hear statements like: “You make it look easy,” or “You are so inspirational” and it makes me itchy. With this blog and my other articles and speaking engagements (you can find links to those here: elsewhere), I try to shine a light on the struggles and difficulties of living with MBC because it’s FREAKING HARD; yes there are victories, but most of what we handle every single day is really awful. I’ve never set out to make anything look easy or to inspire others. Life for me is simply putting one foot in front of the others and desperately trying to stay on course while doing some good along the way. I’d rather that each of you take the time to support someone in your life, educate those around you, and pay forward the good in your life.

How to Talk to a Sick Woman

Do not make me your nightmare. Refrain from invoking me among
the A,B,C’s of your fear.
(There’s no cure, it’s true. That’s why I’m so blue.)

I’m not your “it could be worse”
or proof of the smallness of your woes. My bad luck is not your good luck.

(And by the way, fuck you.)

Your pity, though meant to be kind, undoes me. I find it dreary.
Nor am I the Madonna of cancer, your bow-arched Amazon.

Make me your inspiration
if you like, but I don’t deserve praise. My days are as ordinary as yours.

And when I die, what will you do?
You’ll have lost your light-strung Santos. Cede me back my story.
My veins open, then close like magic.
I don’t dread death more than you do.

Only I get to say I’m tragic.

Dr. Anya Silver’s poem “How to Talk to A Sick Woman” from her book of poetry, Second Blooms. You can read more here: https://southernlitreview.com/reviews/january-read-month-second-bloom-anya-krugovoy-silver.htm.