"Four Simple Words"
17 years - marking time again
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Welcome!
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Every year when March rolls around, I wonder what I should do with March 6. March 6 marks 17 years since my mother died from metastatic breast cancer.
Sometimes, I wonder if I should continue to mention it at all. I mean, 17 years is a decent chunk of time, right? You might be weary of “that old story”. What else is there to say about it, anyway?
But then, I remind myself that my initial purpose in beginning my online writing endeavor years ago was to shed light on the reality of grief and breast cancer — even more specifically — metastatic breast cancer.
Advocacy has always been a primary focus, so with that in mind, today’s post was written. It was a labor of love, and I am even more grateful for your presence in this space today. Thank you for being here.
If you think my article has value, please consider liking, restacking, and of course, commenting. Doing any or all of these things means a great deal to me.
“Four Simple Words”
17 years — marking time again
To help me mark time this year, I’m sharing a brief excerpt from my book, Cancer Was Not a Gift & It Didn’t Make Me a Better Person. It’s from chapter 28, “Four Simple Words”.
In this chapter, I describe the moment I heard those four simple words — the moment I found myself on the other side — the side of motherless daughters.
I got the call while driving back to Minnesota from my home in Wisconsin. I had left my mother’s bedside a day or two before so I could go to my annual physical (she had urged me to go) during which my primary doctor and I discussed, among other things, my next mammogram and genetic testing.
Oh, the irony. Cancer is f***ing cruel.
The last words I had whispered in my mother’s ear were, wait for me.
But she wasn’t able to wait.
Roughly two years after I heard those four simple words, I was diagnosed with breast cancer myself. Life has never been the same. And no, cancer was not a gift and it didn't make me a better person. As far as I’m concerned, that line of thinking is bullshit nonsense.
Here’s that excerpt from Cancer Was Not a Gift & It Didn’t Make Me a Better Person: A memoir about cancer as I know it:
“We just lost her.”
Those were the four simple words Kay (one of my sisters) spoke when she called to tell me the news. I had been expecting such news for a while, but hearing the words said out loud caught me off guard. How could four simple words instantly change my life forever?
Despite the fact I had been preparing myself to hear them for months, I wasn’t yet ready. It wasn’t supposed to happen that day. Perhaps the next day or the day after that, but not that day. I wasn’t ready to step off the bridge. I wasn’t ready to be on the other side…
The day was sunny and warm for early March, and suddenly, it annoyed me that the sun’s rays continued to feel so pleasant and inviting as they streamed through the car windows. What a stark contrast to my mind which was quickly becoming cloudy and confused, filling up with thoughts of disbelief, uncertainty, and an overwhelming sense of emptiness. It seemed I could actually feel Mother’s earthly presence leave me, a very real physical sensation of being cut off from a part of my life I would never be able to return to. I knew at that moment I was a changed person forever. There was no going back to my old life in which I had a mother. I had stepped off the bridge for good. I was on the other side.
I don’t share this excerpt looking for sympathy.
I share it to expose reality — the reality that so many families have faced and will face — the reality of losing a loved one to metastatic breast cancer.
Other realities about metastatic breast cancer that need to be brought into the light include the facts below:
1. Metastatic breast cancer (MBC) is cancer that has metastasized or spread to other organs of the body.
The bones, lungs, brain, and liver are the most common organs where metastasis happens. However, any organ can become invaded.
2. Roughly 6-10% of metastatic breast cancers are diagnosed de novo, which means from the beginning.
Imagine the shock of such a diagnosis right out of the gate. Yet, it is reality for some; so yes, imagine it.
3. Metastatic breast cancer can be treated, but it cannot presently be cured.
4. Treatment lasts for the rest of the person’s life.
Yep. The rest of the person’s life. Let that sink in. Goals of treatment are twofold: control the cancer for as long as possible while not obliterating quality of life.
5. Treatment options for MBC are not all the same.
Treatments are becoming more and more individualized based on type of cancer, location of metastasis, gene mutation status, genomic testing, molecular testing, age, and other variables. You can read about some of the treatments here.
6. The primary treatment goal for a person with MBC is to find and maintain disease stability.
When early stagers are told they are NED, it means no evidence of disease. When a Metster hears NED, it means no progression at that time. But the clock is ticking. Eventually, each treatment will lose effectiveness. Eventually, treatment options run out.
I’m reminded (again) of the wise words from the late Barbara Brenner:
Patients do not fail treatments. Treatments fail patients.
Amen!
7. It’s important to clarify that breast cancer that metastasizes to the bones is still called and treated as breast cancer. It is not bone cancer.
8. A diagnosis of MBC does NOT mean the person did something wrong.
If you’ve been diagnosed with MBC (or any stage), it is NOT your fault. (Yes, sometimes this is implied by the uninformed.)
9. Roughly 20-30% of early stagers will progress to stage 4 at some point down the road.
I’m not sure where this percentage originated, but it seems to be the figure most often used. Regardless of the exact percentage, a significant number of early stage breast cancer patients will progress to stage 4. My mother was one of them.
10. The 5-year survival rate for women with metastatic breast cancer is 31%.
The 5-year survival rate for men is even poorer at 20%. This is likely due to the fact that men are diagnosed later. Man or woman, these are not acceptable survival odds.
Source: National Breast Cancer Foundation
11. It’s estimated that 168,000 people in the US are living with MBC.
The above number is likely not accurate as numbers aren’t tracked as they should be by SEER (Surveillance, Epidemiology, and End Results Program — National Cancer Institute). Why this is I do not know. Advocates are working to change this. As I understand it (correct me if I’m wrong), people initially diagnosed as early stage aren’t counted when diagnosed later as stage 4. If that doesn’t leave you scratching your head wondering WTF, I don’t know what will.
Source: MBCalliance
12. Estimated deaths from MBC are expected to be nearly 42,170 in 2025.
During Breast Cancer Awareness Month and all year long, we keep hearing about all the improvements in Breast Cancer Land (and there have been many), but the bottom line is that the number of annual deaths has not improved in decades.
What kind of progress is that?
I say, dismal.
Breast cancer awareness campaigns have primarily focused on the survivor-in-pink narrative — a rah-rah, pinktified, stale narrative that too often isolates, even erases, those living with MBC. (And it more or less erases men, too, I’d add.)
Sure, things are getting better thanks to SCIENCE, (everyone should be concerned about the Trump administration’s cuts impacting cancer research) dedicated advocates, social media, and the voices of those living with MBC getting louder and demanding action.
Clearly, there is still much to be done.
I still think about and miss my mother every day. Though I can still clearly picture her face, it makes me sad to admit I struggle to remember the sound of her voice now.
Why didn’t I make more recordings?
Grief is ongoing; there’s no expiration date. It isn’t something to get over or in need of fixing.
Grief changes. Mine isn't the same as in year one or year five. It's likely different than it will be next year or in ten more. And this okay.
Grief is meant to be felt, talked about, and witnessed. No matter what the passage of time has been.
So, thank you for being here to witness mine. Please know, I am here to witness yours as well.
Thank you for helping me mark time. Again.
I’d be grateful if you restacked this post to help spread awareness about metastatic breast cancer. Together, we can make a difference.
What words have you heard that changed your life forever?
Is there someone you mark time for?
What would you like others to know about metastatic breast cancer?
Do you have a question about MBC?
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Thank you for reading my article. I appreciate you.
As always, I see you. I hear you, and I care about what you have to say.
Until next time…
Take care of yourself, be kind to someone, and be a light.
With much gratitude,
Nancy
Nancy, my mother's 15th anniversary of her death from a brain tumor is on the horizon, and I know how much it means to keep our beloved's memory alive. Those three words, 'We just lost her,' are so poignant and brought tears to my eyes. I was at Mom's bedside in hospice night and day, but the morning she died, I'd gone home to collect some fresh clothes for my dad. I missed the moment. My brother called with his own three words: 'Mum is gone.' Your post just brought all of that back to me now.
I think about her a lot and miss her!