Waiting

Taking a family history is a huge part of what I do as a midwife. Certain themes seem to run through families clearly; other far-flung and seemingly unrelated diseases and cancers lurk just under the surface. Most commonly I find strings of diabetes and heart disease, advise my patients to exercise regularly and follow up with their primary providers and move on.

“Any family history of breast, ovarian, colon, or pancreatic cancers on either side of your family?” This is often my lead-in question once I get a general lay of the land for a person’s overall family history. Most women can recall an aunt, a grandmother, a great-aunt with breast cancer. One in eight women will develop breast cancer over the course of her lifetime, most of it related to age and environmental exposures over time.

However, sometimes a person’s family history will be much clearer. Two aunts and a cousin with breast cancer. Mothers diagnosed in their 30’s. This is when we start to talk about the hereditary breast cancers, and the genes most commonly related to them, the BRCA-1 and BRCA-2 genes.

Less than 10% of all breast cancers are related to genetics, but those who have them are at close to a 79-90% lifetime risk of one of the related cancers, which, for women, is most often breast or ovarian cancer.

“Has anyone ever told you that you are most likely a candidate for genetic screening?” I always ask, because the topic is often an emotional one.

“You know, it’s a very personal decision to be tested or not.”

I know this because I have made this decision.

This is an extremely personal topic, but one I feel passionate about writing about because once you start looking for resources on whether or not to test, what the process is like, and what most people do, there is almost no information. The best information I could find was from the American Cancer Society, which bluntly lays out risk factors, general guidelines for screening, and preventative measures that can be taken once someone tests positive.

I had my blood drawn last Monday, and the heaviness of waiting has been surreal.

I probably never would have considered myself at risk if I was not a women’s health care provider myself. None of my providers have ever seen my father’s pancreatic cancer as a link in this chain of risk.

I remember being a new graduate, sitting in my very first office completing the requisite online trainings and orientation materials and hit my required breast cancer screening module. I was half listening as the slides scrolled by, the grainy audio lagging a half second behind.

“Women with family histories of not only breast and ovarian cancers, but colon and pancreatic cancers may also be at risk. These women should be referred to see a genetic counselor.”

Then the slide moved on.

A bolt of lightning ran down my spine. Breast and pancreatic cancers. My grandmother had breast cancer when my dad was in college. And then my dad was diagnosed with pancreatic cancer at 53. We had always just talked about it as an unlucky, random occurrence. I didn’t know much else of my family’s medical history on that side; it had been paired down through a combination of long-deceased great-aunts and great-uncles, distance, and similar to most modern Jewish families, by the Holocaust.

I sat with the knowledge of my risk for a little under two years, paralyzed by fear, indecision, and rage at the universe for putting me in such a position.

Never one to be comfortable with uncertainty, I sat with the decision for an unusually long time. The factor that pushed me over the edge was that the vague idea of “children someday,” was starting to become a more definite, “children soon.” I knew that I couldn’t head into that phase of my life without knowing if, or what I was at risk for. The way that these genes function is that if one parent is positive (and I have no idea if my dad had the gene, and my elderly grandmother probably could not get tested), there is a 50/50 chance of the child having the gene. A coin toss.

I stared at my wavy dark hair in the mirror, remembering my grandmother telling me that her hair had started to get curly in her early 20’s, just as mine had. My olive skin and hazel green eyes, those for sure are from my mother’s side, I reasoned. My just-above-average stature? Definitely from Dad, I mused, laughing at my mother’s telling of their wedding, “It looked like the wedding from Munchinland!” she would always laugh as I looked up at her nearly six-foot frame. I could stare at the mirror all I liked, but knew that there was only way to discern who I took after in the respect that mattered most to me at the moment.

So one sunny Friday, my hand shaking as I filled out the forms, I met with a genetic counselor who talked me through my risks, the tests available, and the sticky wicket of figuring out insurance coverage. Without insurance, or if my insurance decided to decline covering the test, we were looking at the possibility of an out of pocket cost in the realm of $5,000-$7,000.

It took me another month past my appointment to work up the courage to go to the lab and actually have my blood drawn. It’s still going to take about another month before the results come back.

So now I wait. I would be lying if I said that I didn’t think about it every day. I would be lying if I said that I have only dealt with my fear in completely healthy ways that do not involve a little too much ice cream or one more beer than a responsible adult should have on a weeknight.

Instead of abject fear this month, I have been trying to think about the meaning that I derive from all the things I love about the life I have built. The joy, difficulty, and challenge that comes with being a midwife. The trusting, honest, and passionate relationship my husband and I work at every day. My deep friendships with friends both far and near. Watching now not one, but two of my Godchildren grow and change constantly as they begin to explore the world. Exploring the great outdoors by hiking, biking, and climbing everything I can get my hands on.

In about three weeks I’m going to get a call. I have no idea what the result will be or how it will change my plans, or how I think about life. Ever the nerd that I am, all I do know is that Gandalf can often be consulted for life advice, and this quote, which I hold dear:

Frodo: “I wish none of this had ever happened”

Gandalf: “So do all who see such times. But that is not for them to decide. All we can do is decide what to do with the time that we have.”

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One Response to Waiting

  1. Lucille says:

    Thank you for your courage in sharing your vulnerability through this process. My mom had breast cancer at 25, and on her side of the family it’s hard to find anyone who DIDN’T have cancer, mostly breast, skin, and pancreatic. I worried a lot as a teenager but was told that because I was under 18, I could not elect to be tested. These issues are weighty enough for anyone to deal with without having to defend their agency in the process. At my request, and after lengthy negotiations with the insurance company, my mom got tested. She was negative. As I approach the age she was at diagnosis, a part of me worries that this could have been a false result, but who knows? Even without the gene, there is no such thing as zero risk, so the only thing left to do is live my life and try to be proactive about my health and cancer screening. Thank you for your humor and honesty in shedding light on this issue. Cancer is scary, and the fear of cancer itself can be scary– but when we shine a light on our experiences and call out, “Me too!” there is less room for fear to hide.

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