University of Pennsylvania Health System

Focus on Cancer

Monday, February 17, 2014

Something Stronger Than Me - A Previvor Story

Katrina is an editor for a medical publication, and lived in South Jersey with her two daughters and husband. In January 2013, she found out that she is a carrier for the BRCA1 mutation. Katrina is returning to her writing roots by blogging through the experience as she weighs family planning, surgical measures vs. surveillance, and the impact all of it will have on her family. In her spare time, she practices yoga and spends time with her extended family.
“Pour me something stronger than me.” ~Nashville

I jotted that lyric down last season, not long after finding out about my BRCA gene. And it came rushing back when we went to see Decoding Annie Parker, a 2013 movie that tells the story of Annie Parker and Dr. Marie Claire King.

The movie looks at parallel journeys — that of Annie Parker, a woman dealing with a heavy family history of breast cancer, and Mary-Claire King, the geneticist who spearheaded the discovery of the BRCA mutations.

Parker’s personal and family history of cancer is eventually explained by a mutation in BRCA1. This  gene sequence Dr. King’s team studied led to the discovery of its role in increasing the risk of breast and ovarian cancer.

The realism with which they portrayed Parker’s chemotherapy treatments hit me in the gut. The swelling. The hair loss. The vomiting. The scarves. I’ve watched four women very close to me endure it. One still is enduring it. They were and are the strong ones. Not me.

Not long after, my friend posted this photo essay in which a photographer documented his wife’s battle with cancer. You can feel the heartache, almost touch the physical pain.

All of these things scared me. I thought, “I don’t know if I can be that strong. I don’t know if I can fight like they did.” I’m sure if it came down to it I would, but in the moment I only felt weakness. I wanted to schedule my preventive surgeries right then and there. As much strength as I knew it would take to follow through, it won’t be the strength I would need to go through chemo. To put my girls through watching me suffer in my fight.

Living with the BRCA Mutation

There are days I manage to forget the decisions weighing on my shoulders, but not for long.

It’s in the 3-day walk for breast cancercommercials. It’s in my bee necklace that my best friend sent me. It’s in the Pandora bracelet we gave my best friend for her 30th birthday that I now wear.

But it’s mostly at night - when I’m feeding and rocking my baby or reading stories to my toddler that I think about all the memories we have yet to make. It’s then that I wonder what kind of example I’m setting for them or what they will think someday when they understand. Or what kind of torture it will be to not pick them up in the days and weeks after my mastectomy. Or if they will poke and prod at my “foobs” and ask why I’m not soft and comfortable for nighttime snuggles any more.

I can only hope they have vague memories of the days or weeks that mommy wasn’t be able to pick them up and millions of fresh memories of the times I did, of the times I ran with them, danced with them from kitchen dance parties to their own weddings.

I cannot help but shed tears over the chance that I passed this on to one or both of them. I pray that they will have many more options than I have or that this won’t even factor into their lives. (And all of this emotional weight, all of these decisions don’t even factor in the debate of whether to have another child).

Knowledge is Strength

Some days I feel very much like the oncologist quoted in this amazing pictorial, Before Angelina:
“When I told my friends about my upcoming procedure, some of them looked at me like I was crazy, like it was a brutal mutilation. They told me to just wait and to see what happened, but I told them the idea of getting the breast cancer diagnosis and having chemo was something I couldn’t face. Maybe I was a coward, but I felt like at that point I still had a choice.
I see “Save the Tatas” a thousand times a day and all I can think is, “Take mine away. Save me from the tatas.” In many ways I’ve faced this reality head-on, but in many ways, I’m still trying to outrun it.

So my goal for this year is to continue to educate myself. For me, knowledge is strength when you feel you have none. And sometimes I’m more scared than strong.

Movies like Decoding Annie Parker and news stories like 
Before Angelina helped Katrina learn more about BRCA 
For a list of supportive resources, including top BRCA reads, visit Basser.org

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