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I Am Not a Hero: I Survived Breast Cancer, Stay Vigilant, and Live in the 'In Between'

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Madhulika Sikka Photo Credit: Kainaz Amara

By Madhulika Sikka, Special to Everyday Health

I meet with my oncologist every three to four months. At my most recent routine checkup I told her about a new pain in my arm: a shooting sensation emanating somewhere in my shoulder or neck, that runs all the way down my arm, through my elbow to the tips of my middle and forefingers. This pins and needles pain occurs regularly and hampers my ability to type and to knit (one of my relaxation pass times), and it bothers me at a consistent level that is not debilitating but is present. If I were to have assigned one of those smiley faces of pain (which she didn’t ask me to do), it would have been in the 4 to 5 range out of 10. My oncologist’s ultimate response was to do a bone scan “just to rule out the bad stuff.” The “bad stuff” could be cancer coming back in my bones (one of the destinations for metastasized breast cancer).

Three years after being diagnosed with breast cancer, which led to a year of surgeries and chemotherapy and a daily dose of drugs that I continue to take to this day, I am a so-called “survivor”. But the thing about survival is that it doesn’t mean you are “in the clear” as so many choose to describe it.

Three years on I have learned that survival requires vigilance on my part and vigilance on the part of my doctors. And this leads to an abundance of caution when it comes to my health. Just because there doesn’t seem to be cancer in my body right now doesn’t mean it won’t come back.

Five-year survival rates for women of my age are impressive, 90.5%. But paradoxically those rates decrease the longer I live. The ten-year rate is 81.5% and the fifteen-year rate is 72%. When you are diagnosed in your 40's, that medical math gives you pause.

So when you get an ache or pain somewhere, you have a conversation like the one I described above. I have still not socialized the idea of a routine appointment because to me they will never be routine.

Madhulika Sikka, with her daughter Maya, during treatment.

The popular image we have of breast cancer makes it seem like being diagnosed is another life stage that we will just get through. The writer Peggy Orenstein has rightly identifiedOur Feel Good War on Breast Cancer. The over-amped, hyper consumer marketing of breast cancer awareness has turned it into one of life’s challenges like crooked teeth or bad hair or bags under our eyes, all of which—unlike cancer—are fixable. Been There, Done That, Got the T-shirt. The truth is that 40,000 women a year don’t survive breast cancer, and for the hundreds of thousands who do, their lives are not restored to factory settings. For many, survival means a life of anxiety and vigilance and an adjustment to what the treatment has done to your body.

If you know someone who has had breast cancer, you are probably relieved to see her “back to normal.” Her hair has grown, her wan pallor has been replaced with something resembling healthy, and all is good. Why would you know anything more? The “feel good war on breast cancer” influences life after breast cancer. It implies a beginning, middle, and end that correlates to diagnosis, treatment, end of treatment.

It’s not quite like that for me and my breast cancer, and truth be told it’s probably not like that for most cancers. The fact is I don’t live my life in a fearful crouch waiting for the cancer to pounce once more. The place I live is in between the “crisis” period of diagnosis and treatment that is behind me, and the current period of feeling mostly good (apart from the side effects of the drugs I still take) and awareness that vigilance is necessary. But I also grapple with a tinge of concern about those odds.

Madhulika Sikka with her husband Jim Millward and daughters Maya and Priya, 2 years after treatment.

This place in between is mostly uninhabited in the diaphanous, blush-hued world of breast cancer awareness campaigns. What a survivor usually hears is some variation on, “You beat it, what a hero and inspiration you are.” But that is not how I feel. I have beat it, for now. I know too many people who get cancer more than once and not because they failed to “beat it.” It might be because of the treatment they underwent in the first place, and it might be because cancer is an insidious cellular malfunction that sometimes just happens more than once.

My aim here is not to seek sympathy or special treatment but to point out the reality of living as a breast cancer survivor. This is not a story you are likely to hear during breast cancer awareness month every October. But it is the way that many of us live our lives, 12 months of the year, and it is a different way for you to think about survivorship.

Madhulika Sikkais Executive Editor of NPR News and author ofA Breast Cancer Alphabet(Crown, Feb 2014)

Photo Credit (Top): Kainaz Amara

Photo (Middle):  Madhulika Sikka, with her daughter Maya, during treatment.

Photo (Bottom): Madhulika Sikka with her husband Jim Millward and daughters Maya and Priya, 2 years after treatment.

Last Updated:2/25/2014
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Date: 04.12.2018, 18:07 / Views: 93254