There are some fairly safe subjects to discuss while on an hour-long car ride, alone, with your future mother-in-law. For example, how excited you are to be joining the family, how excited you are about the wedding, and how excited you are, in general, about everything good and wonderful about her son. These subjects, however, only take up about ten minutes of the ride and you soon find yourself searching for some other sounds to fill the space. So you test the waters with some less safe subjects, such as specific plans about the wedding, house-buying, and future children. These topics carry you through much of the ride. More importantly, your conversation goes well. Your future mother-in-law doesn’t try to sway your plans or offer unsolicited advice. She tells you about her wedding and homes and pregnancies. And you are giddy with this blossoming relationship that is based on an open dialogue.
Once you start to feel comfortable, you let go of the list of benign ideas, and just talk about whatever. But, no matter how comfortable you may feel in the moment, there are still some subjects you should probably never, under any circumstances, test out when on a long drive when there is no easy way out. Sex, for example, comes to mind. But that taboo subject never even crosses your mind because you were raised with a sense of decorum. So instead of talking about sex, you suck the air out of the Chrysler PT Cruiser by bringing up your status as a carrier for the breast cancer gene and your very specific plans to have your breasts cut off.
By the time I found myself on that drive through Iowa’s countryside with my soon-to-be mother-in-law, Judy, I had lived with the idea of the gene and surgery long enough to talk about it as a reality, but not long enough to consider the detailed consequences of it all.
About two years before, when my gynecologist first suggested I get the BRACAnalysis, I hesitated. Well, no, that’s not exactly true; I said I didn’t want it. I asked her if, given my family history, we could just act as-if. I suggested we could get the screenings done and do whatever it is we would do if I knew I had the gene, because, I figured, even if I didn’t have the gene, I still wanted to be on the alert. I knew that the gene wasn’t the only determining factor, that there were other factors we probably didn’t even know about yet. “So, let’s just err on the side of caution and do what we need to do,” I said. Really, I just didn’t want to know.
My gynecologist Dr. Bennett wouldn’t let me bury my head in the sand, not even up to my neck. She explained that I couldn’t just act as-if. And it all came down to money. In order for my insurance company to approve the expensive screenings, I needed to test positive for the gene.
Days before this appointment, a friend had complained to me that she couldn’t get any insurance companies to cover her because she had ticked the box that called out migraines as a pre-existing condition. Migraines. Surely, my insurance company would drop me immediately if I were BRCA positive. I voiced my second attempt to avoid the truth.
“No,” Dr. Bennett said. “Insurance companies can’t hold it against you.”
I asked a couple more questions just to bide some time as the decision whirled around in my head.
Dr. Bennett went on to explain that it was the perfect time for me to have the test. It was December, and I had already met my deductible for the year, so the test would be 100% covered by my insurance. Also, I was 34 years old, about 10 years younger than my aunts had been when they were diagnosed with breast cancer. And that was the general recommendation—to begin screening 10 years before your youngest relative was diagnosed.
It was time, we agreed. I stuck out my arm and she drew my blood.
It took less than a week for the results to come back: positive for a deleterious mutation, BRCA-2. Dr. Bennett went through the lab packet with me in her office. I sat at the front edge of the exam table. Dr. Bennett sat on a chair that seemed much too short from my perch. She had a folder with my lab report inside. It was thick, conveying the seriousness of the information it contained. I was only able to take in some of the information, in bits and pieces. “…you will be screened every six months, alternating a mammogram and MRI…we recommend a preventive mastectomy…most people who get cancer do not have a family history or the gene…about 90% of cancers have environmental causes…” I heard the part about the screenings, dismissed the part about the preventive mastectomy, and misinterpreted the last bit about the environmental causes of cancer.
I focused on the part about how most people who get cancer do not have a family history or the gene. I came away from this appointment with my own version of reality. I told myself that, yes, I had the breast cancer gene, but the gene doesn’t cause most cancers, so I really shouldn’t get too upset about the results. In fact, the results allowed me to get screenings that would catch anything before it progressed. So, really, I was ahead of the game. I was part of a select group that got special treatment, but probably wouldn’t get cancer anyway.
The real message that Dr. Bennett was trying to convey, however, was that cancer was nearly impossible for me to avoid. I had the mutation, which put me at a higher risk, about 84% to quote the lab report, but if that didn’t get me, environmental factors likely would.
My first scare came a few weeks later at my first mammogram appointment, a baseline screening, Dr. Bennett called it. It wasn’t as routine as I had thought it would be. After several rounds of pictures, the radiologist wanted to use an ultrasound to get a better look at a particularly concerning area in my right breast. Despite the circumstances, everyone in the ultrasound room was upbeat. The radiologist talked to me about unrelated matters. He told jokes—inside office politics jokes and general funny-guy jokes. Everyone in the room was cheerful and I followed suit.
The radiologist couldn’t make a determination from the ultrasound, so we scheduled a biopsy a few days later. The possibility of a cancer diagnosis worked its way into my mind’s chatter. I pushed the idea aside, though. It was too soon. I was too young. I had never felt better. I think the radiologist’s encouraging words during the initial ultrasound and follow-up biopsy helped, too. No one gave worst-case scenarios. No one seemed overtly worried. When the call came from the nurse that the mass was benign, I breathed a sigh of relief that seemed inevitable.
My doctor set me up with an oncologist, Dr. Reyes, to manage my screening plan. I made one change to the standard plan: I decided I didn’t want to get annual mammograms. The increased radiation worried me. I just wanted to get an annual MRI, which does not involve radiation. Dr. Reyes did not try to persuade me to continue with the mammograms. He also didn’t suggest alternative screenings, like an ultrasound to keep up my six-month schedule. I would have one test per year and see him twice a year for check-ups.
During our initial visit, Dr. Reyes also recommended a preventive mastectomy, but I so successfully pushed that idea to the back of my mind that when he talked about it again a couple of years later, it felt like brand new information. During one of my routine, six-month check-ups, I showed Dr. Reyes my new engagement ring, and he asked about our plans for children.
“Just one,” I said, “Well, one at a time.” He loved the idea—one at a time.
“You may want more,” he said. “You’re still young. You have time. And when you decide you’re all done having babies, we’ll talk about your mastectomy and hysterectomy.”
“Yes,” I said, before I really heard the words. I pretended this was old news. Had I not been paying attention? Had I forgotten a conversation?
“It is all part of your plan,” he reiterated.
I held in my sadness for the rest of the appointment and let the news sink in during the drive home.
That night, I told my fiancé Joe about the plan. He was on his computer in his home office. One part of me thinks I said it confidently, so as not to worry him, as if the decision had already been made—no big deal. The other part of me remembers being honest. I think I even got teary. The news caught him off guard. He leaned back in his desk chair, looking at me with eyes a bit wider than usual, full attention. I told him we had time. In my mind, the age of 40 seemed about right. We would get married, have one child or one child at a time, and then I would have some preventive surgeries, and we would keep cancer away.
A couple of months after this conversation Joe and I traveled up to Iowa to visit his family. And by then, this new-ish plan made sense to me. It almost sounded like a normal life stage: wedding, baby, mastectomy, hysterectomy.
Of course, they were all just words to me then.
Joe’s mom Judy and I were on our way back from a stained glass shop after picking out glass pieces for a framed window she was going to make us as a wedding gift. When I shared my news, Judy’s hands held steady on the wheel. I remember her in profile. She kept her gaze forward as I went into some detail about the gene and the plan and our decision to have just one child, probably. We joked about the “one child at a time” caveat.
There are many qualities you can tell about a person by what they say and what they do. There are also many things to learn about a person by what they don’t say and don’t do. Judy did not ask too many prying questions. She did not question my research or rationalization. Instead, she kept her own worries and sadness just below the surface. Her quietness and fallen expression, hinted at what was going through her mind, but she didn’t add her burden to mine. She just listened.
Her response was in direct contrast with Joe’s grandmother’s response, that night, to the revelation that Joe and I only wanted one child. After pie, Joe’s grandmother asked pointedly how many children we planned to have. I answered honestly, “We’re thinking just one.” Grandma, sitting across from me at the dining table, immediately embarked on a campaign to change our minds. On the one hand, I appreciated her directness. She told the room, filled with Joe’s aunts, uncles, cousins, brothers, nieces, and nephews, that she was an only child and it was lonely and terrible and quite possibly the worst mistake a couple could ever make. We all listened.
I made the mistake of explaining my apprehension about the unknown. I wasn’t sure how pregnancy would go. I didn’t know if I could handle giving birth more than once, especially after I knew what to expect. And I couldn’t imagine caring for more than one child at a time. Didn’t a baby need all of my attention? How would I manage a baby and a toddler?
“You could have twins,” she announced. “There are twins in our family.” There was some naming of the sets of twins, their parents, and when they were born. She even brought up twins two or three generations earlier who were sickly. I believe one or both of them died. She was not helping her own cause.
I smiled politely. “Yes, twins would be wonderful. One pregnancy, two children, everybody wins,” I said. This is the night our agreement of “one child at a time” became “one pregnancy at a time.”
When my mother had heard me say years and years before I ever met Joe that I probably only wanted to have one child, she didn’t come right out and say she thought it was a bad idea. Instead, she said everything else she could think of to sway me towards a larger family. She talked about her friends who wished they had siblings. She talked about how wonderful it was that my sister and I had each other. She emailed me articles about the benefits of siblings or the drawbacks of only children. There was a lot of bobbing and weaving on my mom’s side, trying to find the sweet spot that would cause me to change my plan. I’m not sure how long it took me to finally say something about it, but I did. I told her that I knew what she was trying to do, and it wasn’t working. “I’m just giving you the facts, Michelle,” she would say. “It doesn’t hurt to know the facts.”
My response in my head was, “Maybe I won’t have any children at all, Mom. I don’t even know if I’ll get married! No one is knocking down my door with a proposal, so let’s just stop putting the cart before the horse.” But my real response was something closer to annoyed silence.
My mom thinks one child for us is perfect now—a great decision even. To be fair, when my mom was touting the benefits of two children, none of us could have known that my own survival was at stake.
A small bump appeared on my right breast just weeks after Joe and I were married, and just days after I found out I was pregnant. A small bump that was so close to the surface, I could almost see it.
Lab reports would tell us that the bump was cancer. Lab reports would also tell us that the hormones that surge through your body to sustain a pregnancy were the same ones that fueled my particular cancer. But lab reports could not tell us exactly how to proceed. Some people tried. Of course. But the people with the most at stake, Joe, Judy, my mother, they listened. And I told them my plan: pregnancy, mastectomy, chemotherapy, induced labor and delivery, hysterectomy. In that order.
Yes, they all nodded. Because this was our one chance for one child. And this plan gave me the best chance to be her one mother.
Michelle is a freelance writer and editor. She lives just outside of Austin, Texas, with her husband and daughter.