Having breast cancer means being ‘aware’ every day, not just in October

Washington PostOctober 20, 2014Articles

There is a catchword for October among women who have been treated for or are living with breast cancer: Pinktober. The reason is on full display on television one Sunday afternoon as my boyfriend cheers on his NFL team: pink cleats, pink towels, pink goalposts, coaches with pink ribbons and a male announcer promoting the NFL’s “A Crucial Catch” campaign.

Yet I’m left to wonder, more than two years after my diagnosis and eight months out of active treatment for breast cancer: What is all the pink accomplishing?

After a wave of deaths in the young women’s breast cancer support group to which I belong, I am glum and petulant despite my boyfriend’s best efforts to alleviate my sour mood. I attempt to provide him with a snapshot of my pain: the deaths, my own fears at the blind luck of it all and my struggles to stay in the present.

Well beyond the 31 days of breast cancer awareness month, I am aware.

Getting up from my desk at work, my joints are stiff and achy, a side effect of the hormone therapy I will be on for 10 years. I hobble like a woman beyond my years until my hips, knees and ankles are warmed up and the discomfort dissipates. A colleague asks, “Did you hurt your leg?” “No, I’m okay,” I reply with an embarrassed half-smile.

Beginning with my first stiff steps out of bed, I am reminded.

Sitting on a mat, I pull up a compression sleeve and hand garment. With 21 lymph nodes removed from under my armpit, the lymphatic system in that area has gone from a superhighway to a two-lane country road. To help prevent swelling of my arm and hand, I wear compression garments during physical activity.

When I join a new yoga class, the instructor looks around and peacefully inquires, “Any pain or injuries?” I ignore the question, not wishing to draw attention. She zeroes in on me, glancing at the compression sleeve, and whispers, “Any injuries?” “Surgery, radiation and lymph node removal.” I turn my focus to my breath and attempt to clear my mind.

I am grateful that my “chemo curls” have a Shirley Temple bounce to them and that growing my hair back has not been as awkward-looking as expected. “I love your hair! I wish I had the guts to cut it off like that.” I recognize the intentions behind these compliments, and I am always grateful for them. But I am reminded.

When I arrive early to receive a monthly injection of a pellet in the subcutaneous tissue of my belly to suppress my production of estrogen, the nurses decide this would be a good learning opportunity for a new nurse. The needle used to insert the pellet is large and can be difficult to administer. As a result of the switch in nurses, I wait longer than anticipated and miss an activity I had planned to attend afterward. I ask to speak to the head administrator at this world-class New York cancer hospital. Nothing will change if people don’t speak up, I figure.

In reality, it’s a buildup of frustration after more than two years of constantly waiting for oncology teams that are overworked and understaffed. The administrator meets me and kindly advises that I not schedule anything for at least two hours after an appointment time. I find this unacceptable, yet I realize that no matter how hard I try, my life for the foreseeable future will be dictated to some extent by medical appointments.

I step out of the shower and glance at myself in the mirror. My left breast sits slightly higher than my right, a result of the 28 radiation treatments to my chest wall, supraclavicular lymph nodes and breast, and it is cooler to the touch than the rest of my body. A keloid scar, under which the port used to administer my chemotherapy once sat, is visible over my right breast. Below, a belly that resembles an early pregnancy bump greets me, the result of weight gain after I was thrust into chemically induced menopause at the ripe old age of 26. This new body still surprises me, and I am aware.

In January, I start a new, full-time job. Intermittently, I begin to experience dizzy spells. Knowing that the aggressive form of breast cancer I was treated for likes to spread to the brain, worry creeps in. I mention the symptoms to my oncologist, who reassures me that it is probably a case of my doing “too much, too soon.” But she orders a brain scan to be sure. I don’t tell my family, choosing not to (hopefully, fingers crossed, knock on wood) unnecessarily worry them. Instead, my boyfriend and I go get the scan on a chilly winter evening after work. It’s clear, and I breathe a little easier the day I receive the results. I am acutely aware.

At work, while discussing our organization’s 401(k), a colleague innocently asks how much I contribute. Caught off guard, I reply that I don’t. She takes the opportunity to elaborate on the merits of investing while young. I respond that I’m aware of that and contributed healthily to my previous retirement plan. I leave out the part that I don’t contribute because I’m not convinced I’ll be around to enjoy the fruits of my financial prudence.

This is what my breast cancer awareness looks like. Not just in October, but every day I and countless others who have been diagnosed are reminded, made aware. It’s not rosy, it’s not always bald and smiling, and it’s not over once our hair has returned and our cheeks lose their steroid puffiness.

With the world awash in pink, I’d like to change the conversation around awareness and share this information: Despite the promise that “early detection saves lives,” the actual number of Americans dying of breast cancer annually has been around 40,000 since at least the year 2000.

In fact, close to a third of all diagnosed early-stage breast cancers go on to metastasize — that is, return as incurable — with people in that group having a median survival time of 18 to 24 months. And even with all those pink ribbons, only about 2 percent of research money goes toward metastatic breast cancer. Taking inflation into account, the budget of the National Institutes of Health has decreased by more than 20 percent since 2004, which has a direct impact on the grants that the National Cancer Institute doles out as well as on young scientists deciding whether topursue careers in research.

So, this month, I encourage breast cancer awareness to be translated into action. Perhaps this means donating to such organizations as Metavivor, a volunteer-run Maryland-based nonprofit that directs all of its donations to research. Maybe it’s being a more informed consumer of pink products: How much of a product’s profits are given to breast cancer-related charities, and what are those charities’ objectives? And action doesn’t have to mean spending money; write your elected representatives to vote for and support medical research funding, or deliver a meal to one of the 162,000 women living with metastatic breast cancer.

I am grateful that I was diagnosed with a disease that garners so much “awareness,” when many other diseases are given so little. But now is the time for action.

By Kathryn Petrides. Petrides is a professional at a nonprofit. She lives on the New Jersey side of the Hudson River.

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