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Sleepless in Dallas

Can't a girl get some beauty sleep around here? I'd really prefer to not look like a walking zombie tomorrow while sporting my rapidly balding hair-do.

Guess the Sandman won't be stopping by tonight. This has become my routine after each intensive chemotherapy treatment. Between the steroids pulsing through my veins and the Neulasta Onpro on-body injector (you've probably seen the commercial) anchored to my arm flashing green like a beacon in the night, slumber ain't coming easily. Luckily, this was round three of six before my big surgery. Being halfway through my difficult chemotherapy sessions feels good. But lying in bed for five hours without getting an ounce of shut eye does not. So it's 2:00 am and I'm up. Instead of sheep, I'm counting upcoming infusions and thinking about a report that I received in the mail this week.

When I first met with my surgeon a few months ago, she strongly recommended that I complete genomic testing to determine if my cancer had been passed down through inherited genes. We both decided that my choice to undergo a double mastectomy would not hinge on the outcome of these results, but that it might impact future choices that we make regarding my health. I was all in. After all, knowledge is power.

Perhaps the greatest benefit of the genetic testing process, was having to dig deep into my family tree and identify all the cancer in my close and distant relatives. Seeing it all there on paper was distressing.

My genetic counselor was very thorough first by having me answer a series of questions like a family history quiz and then by taking a lot of time to speak with me and my mother who happened to be in town that week supporting me. It was explained to us that it is still very rare for a genetic test to come back positive for genetic mutations, but even the counselor agreed that based on my age and family tree, he was not going to be surprised if mine did come back positive. If positive, we knew that the next recommended treatments by my medical staff would likely be surgery to remove my ovaries and fallopian tubes. Another potential major surgery frightened me, but more disheartening than that would be the ramification for my own daughters.

Mentally and emotionally I had prepared myself for a positive result. I decided early on that I wouldn't allow a positive genetic mutation to ruin my life, to cause me to constantly look over my shoulder or to fret for my daughters. I believe it's a powerful tool that can be shared with one's medical team and also with family.

My Color Genomics test came back negative. Admittedly, I have never felt so positive to be negative. But we're not out of the water. Genetic testing is still an evolving science. I have been encouraged to call the counseling center in another couple years just to see if there are additional tests which have located any inherited genetic abnormalities that have not yet been identified. I plan to do that.

My insurance company finally agreed to cover my genomic testing. But I was prepared to pay out of pocket at a cost of around $100. If you are reading this, consider talking with your doctor about getting tested. It was a simple blood test for me, it can also be taken from your saliva. The takeaway for me is that information reduces uncertainty.

You can read more about the physician-ordered test here.


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