I’m not a survivor

| 23 Jun 2016 | 02:10

My mother, my sister, and four of five aunts got breast cancer. I was terrified.

By Beth Stanitski

At first blush, this probably looks like another bit of business written by a yoga instructor, complete with requisite asana (posture) selfie, touting the benefits and importance of regular practice.

That’s not my intent for this piece. In fact, I am writing today about something that few people even know about me, but it’s time they did—not for my sake, but for their own. Yes, I am a yoga instructor. Yes, I am a kickboxer, and a runner. Yes, I am a mother to three young children.

I am also BRCA2 positive.

For those of you who aren’t familiar with that term, it is the name for a deleterious genetic mutation that brings with it a 55% increased risk of breast cancer, and a 45% increased risk of ovarian cancer in its carriers. That word “deleterious” there is critical: so-called “normal” women have a gene that actually works to inhibit the growth of cancer cells in breast tissue. For one reason or another, I’m missing that little bit of information in my genetic material. To help flesh out the above stats a little bit, consider the fact that the risks of these diseases for a “normal” woman are in the neighborhood of 12% and 1.3%, respectively. These figures seem shockingly low when held against the fact that almost everyone knows at least one woman who has been touched by breast cancer. In the past 10 years, there has been a major push for awareness, including those little arm bands worn by 13 year old boys that read, “i heart boobies,” and “Save the TaTas.” Trust me, I can take the little trivializing jokes in hand with the enormous benefits of increased awareness. Those numbers up there, those statistics? They’re no joke. Oh, and the genetic mutation? It’s about as hereditary as eye color and skin tone. And the real perk is that family history boosts your risk another several percentage points.

You might see where I’m going here.

My mother had five aunts, four of whom got breast cancer. My mother’s mother had breast and ovarian cancer. Eight years ago, my mother and my then 42 year-old sister were both diagnosed with breast cancer within a few months of one another. Both underwent radical surgery, chemotherapy, and radiation, as well as a full genetic screening. My sister’s operation, which followed almost immediately on the heels of her diagnosis, happened to coincide with the birth of my second son. When she met my resistance to getting the genetic screening done for myself, things got pretty ugly over the phone.

“What can you possibly be thinking?” she said. “Why the hell wouldn’t you WANT to know your level of risk? Don’t you know that there are preventive measures that you can take? Are you just going to wait around for cancer to show up? You have babies to think of, and you’re my only sister! How selfish can you get?” and so forth.

Of course, this conversation only galvanized me in my decision not to get tested. I was going to do things My Way, which is to say I was going to hide my fear behind the guise of independence and control. At the time, I was 39 and wanted no disruption in my life—I didn’t want to know my genetic makeup. I kept convincing myself that I would be fine, that I would be super careful to get regular tests and be very vigilant in my self checks. I was even unmoved by the fact that mammograms had missed both my mother’s and my sister’s tumors.

In truth, I was terrified.

And then something dawned on me. Was I going to stay in a burning building that would inevitably collapse in on me and wait to get cancer, just because I was comfortable there? Was I going to be bullied by my fear? Or was I going to jump out of a window of that building into a safety net and run like hell before the disease could get to me? The organs that had grown, harbored, and fed my beautiful babies were the very things that could take their mother away from them.

So I steeled myself and got the genetic screening done. After all, as a yoga student and teacher, I was supposed to be practicing svadhyaya—self-study and self inquiry. There was information there that could possibly save my life.

The rest of the story you can probably guess at: in May 2011, just after we moved to Warwick, I underwent a radical bilateral mastectomy with reconstruction. It was terrifying, painful, and mutilating. Recovery was brutally slow.

And I continued a very modified asana practice.

In May 2015, I underwent a total hysterectomy to ward off ovarian cancer. It was terrifying, painful, and mutilating. Recovery was brutally slow.

And I continued a modified asana practice.

In the years following all of this, I have had to have more than one conversation justifying my choices. I was frankly shocked and disappointed by how many women—friends of mine, mind you—not only questioned what I had done, but stated outright that I had been too radical, that I had caved to the untrustworthy and monolithic medical community. I should have pursued holistic options, they said. Warm lemon water, apple cider vinegar, and an all-organic vegan diet might have been a far better path, a more “natural” one, a more “empowering” one. Besides, weren’t doctors all but ignorant about women’s health to begin with?

I am telling you all of this in order to address some of those questions, and to offer myself as one example of the power of self-knowledge. It’s uncomfortable to undress so publicly, but if this story can reach even one woman and set off a desire to get proactive, then I’ve done my job and the discomfort is worth it. Because I know my risk, I took what is admittedly a radical series of steps. Is there a chance that I might be the one female on my mother’s side of the family whom cancer misses? Sure…I suppose. Am I willing to roll the dice and possibly miss meeting my grandchildren? Not on your life, and not on mine either. And if you think the surgeries that I underwent were mutilating, I would encourage you to consider what chemotherapy does to a woman’s body.

If you have even the slightest doubt about your family history with this disease, don’t be bullied by your fears that life will never be normal again. The more you know about yourself and your body, the more logical, informed choices you can make. If you have a yoga or meditation practice already, trust that it will continue to grow and deepen, that it can sustain and comfort and support you, and that you can face whatever challenges that present themselves and wind up stronger and clearer than ever. The process is slow, and it’s uncomfortable, and it changes you dramatically, inside and out—but isn’t that the purpose of an awakened, intentional life? To teach us the patience, gratitude, strength and endurance to overcome the obstacles on our path as we evolve?

Oh, and that picture? I chose a challenging pose not to show off my own practice or to convince you that I’m some hot-shot teacher, but to show you that you won’t have to give up your physical work. You will have to modify things for a time, but this photo came after all of my surgeries were over, not before I started the whole process. I’m on the other side now. I’m back to all of my normal activities, with all of the energy and enthusiasm and stamina and strength I had before. And now I don’t have to worry that cancer will be the thing to take me.

I’m not a survivor. I didn’t have to undergo the ravages that I saw cancer wreak on the minds and bodies of my mother and sister. But I am a warrior. I was afraid, and I faced down that fear.

You can, too. Trust me.