Know Stage IV: Parenting through the lens of a metastatic breast cancer diagnosis

For LBBC’s Know Stage IV campaign, on Sept. 18, 2017 members of LBBC’s 2017 class of Hear My Voice Outreach Volunteers have written about what they want other to know about metastatic breast cancer.

For Know Stage IV, Rachel Fournier writes about keeping life for her kids as normal as possible for as long as possible while she faces metastatic breast cancer.

“It is not length of life, but depth of life.”

—Ralph Waldo Emerson

“What do you want my kids to call you when you’re a grandmother?” my 12-year-old daughter nonchalantly asks as I’m driving her and her younger brother to school.

The seemingly innocuous question grabs me in the chest. I look quickly in the rearview mirror to see if they can see my face in the reflection. To see if they can see the tears welling up in my eyes, sense the stinging in the back of my throat. I look at the mirrored image of each of them the way I always do and pause, trying to freeze every moment. I’m willing them to have the strength they will need in the months and years ahead, pleading silently for them to be there to support each other, to not let my disease and their subsequent loss be a defining narrative for their own lives, but to let our time together buoy them through life’s challenges. For them to savor the memory of every Girl Scout camping trip I’ve led, of every time I’ve cheered on the baseball sidelines, of the homemade Halloween costumes, of the Pinterest-worthy birthday parties, of the hundreds of times we’ve cuddled on the couch watching cooking shows. For all the love I’m trying to infuse deeply into every cell of their bodies, into every part of their being, to be enough in a race against time.

In a split second, I’m silently calculating the gravity of my daughter’s question, as I do for every forward-looking milestone that I used to take for granted:

• Her first day of high school—2 years
• Her junior prom—4 years
• His driver’s license—7 years
• His high school graduation—8 years
• Her wedding—18 years
• My hypothetical grandchildren—20 years

Statistically, I will miss them all.

I see every event that I will miss, every struggle they will have to endure without me, every celebration that will be dampened by loss, every joy that will be a little less sweet because they aren’t sure if they should allow themselves to be truly happy if their mother is gone.

No time has passed. No calculator has been needed. Because I have been living with metastatic breast cancer for 2 years now. Because I know the data all too well. And I know that the “pink” breast cancer awareness campaigns are a farce. I was diagnosed stage IV de novo (stage IV at initial diagnosis, when breast cancer has already left the breast and traveled to bone, liver, lungs, brain or elsewhere) seemingly out of nowhere at 38. I was actively living my life, working in a field I loved, traveling with the husband I met a lifetime ago at summer camp, raising our children. I had no symptoms—and was deemed too young for screening mammograms—until my spine fractured in three places and cancer was found in my spine, my ribs, my skull, the result of insidious breast cancer cells eating away at my bones undetected for months if not years.

I know that up to about 30 percent of early-stage breast cancer patients will progress to stage IV, even those whose doctors have told them they are “cured.” I know that of those who are metastatic, 6 to 10 percent, like me, will be diagnosed stage IV out of the gate. I know that there is NO CURE for metastatic breast cancer, that the pills and infusions and shots and surgeries and radiation sessions only serve to delay an inevitable progression. I know that on average, women (and men) with metastatic breast cancer live 33 months after diagnosis, even with the most rigorous treatments. I know that 113 patients—mothers, fathers, sisters, daughters—still die of metastatic breast cancer every single day, just in the United States. I know that this hasn’t changed in 40 years, despite being saturated with “awareness” and pink ribbons on everything from toilet paper to trash trucks.

I know that there are research and pharmaceutical advances, but there aren’t enough and I don’t know if they will come out fast enough for my children, for their milestones.

I know that today I will check my social media pages and see more losses. To see more of my friends who are dying while the world misconstrues breast cancer as the “easy cancer” with tutus and pink wigs and offensive “Save the Tatas” campaigns.

I know that today I will call my congressmen and ask for more research funding, for drugs to get approval more quickly. I know that today I will speak out about “awareness” and how what we really need to fund is research.

But I also know that in the tightrope act of living with metastatic breast cancer that today I feel OK, that today I look like every other frazzled mom in the drop-off lane. I know that the daily pills and the drugs that are infused into my veins every 3 weeks and the shots I receive every 4 and 6 weeks are keeping my cancer quiet.

I know that today I can add one more day to the goal that my husband and I set in the hospital when I was diagnosed: Keep life for the kids as normal as we can for as long as we can. It's hard: They don't know the full details of my diagnosis, and we aren't at a point that they need to, so I'm trying to navigate being a vocal advocate and a protective mom at the same time.

“I don’t know,” I swallow my tears and answer honestly, as the doors open and my kids — my world — get out of the car to join a sea of backpacks. “I guess we’ll just have to see what happens then.”

Learn the facts. Support the cause. Know Stage IV.