I watched the words float out of his mouth and hang in the air, hovering 4 feet over the bleached linoleum floor and steadily making their way to my ears. The gentle sound of the word “she” entered first, softening my eardrum to the sweet pronoun for my baby girl. With little space in between, “has” drew itself across my earlobe, bouncing off of my silver earring and tinning its way home. Without warning, and without preparation, the hard “c” of “cancer” pierced my drum, jerking my head back in a small but focused motion. My ears directed my arms to hold tight to her tiny body perched on my lap while my mind fought the urge to go limp, lifeless, dark.
“Did you just say, ‘she has cancer?'” I asked, doubting the very existing of my senses.
Just two years before our visit to the pediatric ophthalmologist, I was in a hospital bed with my feet in stirrups, surrounded by doctors from the NICU. In our small delivery room, young men and women in white coats stood shoulder to shoulder, their heads cocked to one side as they focused on parts of me that I hadn’t even seen in more than 6 months. Medical students, doctors, nurses. My daughter was born premature — at 35 weeks — and weighed just 5 lbs, 5 ounces. She was born in mid-July, just weeks after all the new medical residents started. So, everyone was there for the show.
“Good news,” one of the doctor’s said to me as I was just starting to feel high from the release of pain and the euphoria of new motherhood. “She just made the cut off. We keep babies in the NICU at 5 lbs. She beat it by 5 ounces — she didn’t beat it by a lot, but beat it by just enough. She is certainly close to the cut off line, but everything looks great.” Within minutes, the wall of white coats emptied to reveal the backdrop of gray wallpaper with a dry erase board sign reading, “Welcome to the maternity floor!” I held my baby girl, promised her that everything would be alright, and knew my life had changed forever.
When Jo was diagnosed with cancer, we experienced living on the line again. Jo’s cancer extended just barely to her optic nerve. With children who have tumors contained in their eyes, an enucleation (removal of the eye) is enough. When children have tumors and cells extend into the optic nerve, the protocol is definitely chemotherapy. Jo’s cells were found just at the line, so in order to be safe, we proceeded with a chemotherapy protocol for her. Just to be safe.
A few years later, in an effort to find out whether or not her cancer is genetic, I underwent genetic testing. I came up negative for the cancer that she has, however, by simple scientific chance, the lab discovered that I have a genetic marker for kidney, spinal, and retinal tumors called VHL. I had never heard of VHL and knew nothing about it (and, I still sort of claim some ignorance to it, even now). The geneticist explained that my case is “scientifically interesting”, though. Code for: Damn! We’ve never seen this before! The position where my VHL marker is located has only been documented in 1 other family – a family somewhere in England that was tested back in the mid 1990s. That family is no longer traceable. According to the geneticist, the position of my VHL marker is on the line. If the marker shows up in “Section A” (my terms, not the scientific ones), I definitely would develop kidney, spinal, retinal tumors. If the marker shows up in “Section B”, I definitely would NOT develop kidney, spinal and retinal tumors. Whadda you know…. my genetic marker shows up, you guessed it, right in between Section A and Section B. Because no one has worked with any patients in this genetic position, I am undergoing all of the tests that someone in Section A would undergo, just to be safe.
I straddle the line between fat and healthy. I straddle the line between financially struggling and financially stable. I straddle the line between clueless and smart, self-doubtful and confident, introverted and extroverted, cowardly and brave, understimulated and overwhelmed, and depressed and happy.
I’m done with living on the line.
Taking charge of my hereditary risk of cancer physically takes me away from living on the line. I still struggle with my emotional acceptance of it — am I really done having biological children? what if this surgery doesn’t go well? – but I know that having this surgery means I don’t have to constantly worry about my risk of breast cancer.
After finishing a 4.25 mile run today with Donna and Christina, I looked back at my running logs from February. Two miles, two miles, two and a half miles, three miles, three miles, three and a half miles, four miles, four miles, five miles, six miles, six and a half miles … the line of achievement gets higher and higher and higher. Those two mile runs back in February were amazing. I remember High-5’ing Christina and being shocked that we had just done two miles. TWO MILES! Those were the days of cold bitter wind, ice on the ground, and more clothing on our bodies than in a Goodwill box! Today’s run — uphill — meant that we had moved the line. And, the line has moved me further away from fat and closer to healthy. My changing body has sparked a changing mood, and I am moving further away from the lines that separate self-doubt from confidence; cowardly from brave.While I can’t change my genetics, I can embrace the challenges they have put forth for me.
Crossing the starting line of the 1/2 Marathon separates my life before the race from my journey as a runner. At mile 7, when it is time to turn back around, I will have the wonderful opportunity to retrace each step, each accomplishment, and each challenge that my life has presented. Though the race takes me back to that starting line, I will not be the same. I will be stronger. Wiser. And closer to a life that is not determined by hereditary cancer.
I will move this line, one step at a time.
Peace, love, and less than 7 weeks until the lineup,