Lillie Shockney on Coping with Breast Cancer

Lillie Shockney, R.N., M.A.S., has worked at Johns Hopkins since 1983 and served as the Administrative Director since 1997, and is responsible for the quality of care programs, patient education programs, survivor volunteer team, community outreach at a local, regional and national level, webmaster and patient advocacy. Whew!

She is also the author of eight books, including Navigating Breast Cancer: A Guide for the Newly Diagnosed, as well as a nationally recognized public speaker on the subject of breast cancer. She serves on the medical advisory board of several national breast cancer organizations and is the co-founder and vice president of a national non-profit organization called "Mothers Supporting Daughters with Breast Cancer." In this interview, she speaks openly about her experiences with breast cancer, and why finding humor in the moment is so critical to survival success.

Do you remember when you were first diagnosed with breast cancer?

It was 1992 and I was 38 when I was diagnosed. I never expected to get breast cancer. Being an oncology nurse falsely led me to believe I’d be granted some special immunity. I was so confident that my biopsy was benign that I looked up my own pathology report while my surgeon was out of town. I read the words "breast carcinoma" 12 times. I couldn’t believe it was mine.

I had multiple tumors in my breast, which meant I needed a mastectomy. Due to other medical problems, I would not be a candidate for reconstruction—another blow to my self-image and psychological well-being.

How did you find the strength to feel whole again?

Our daughter Laura, who was 12, provided me the inspiration to endure and learn that our beauty is within us and not what we wear inside of a 44D bra. She even wrote me a poem about how beautiful in her eyes, and others, I was and am. It was a heartfelt experience to know that we had taught her well.

You believe laughter is crucial to survival. How did you find humor in your situation?

The last thing on my mind was laughing about the news, but my daughter was the one who became the catalyst to our finding humor. Children ask questions that, to them, are very serious, but to us can be quite hysterical. She asked me questions like, "Will they let you take your breast home to keep? After all, it isn't the doctor's, it's yours. You could put it in daddy's big pickle jar and put it on the mantle so every now and then he can go downstairs and look at it."

My husband and I made a pact that every day for the rest of our lives, we would find something funny about the fact that I had breast cancer, and we really have stuck to that agreement.

You're a two-time survivor. What was it like getting diagnosed with breast cancer a second time?

Two years after my initial diagnosis and treatment, I was diagnosed in the other breast. To inform family and friends, we called and said, “Betty Boob [my left breast's prosthesis] is getting a roommate and we need you to help us select a name for her.”

You named your breast prosthesis?

I even sent out adoption notices to my best friends that I had gotten Betty Boob. One of my friends mailed her a Christmas ornament in the shape of a baby bottle. It said "Betty Boob's First Christmas, 1992." And we displayed it in the living room. We decided it was a good substitute for having my breast in the pickle jar.

Didn't your family think you were being flip by telling them your breast cancer had returned like that?

One of the things we learned was this: Converting my breast prostheses into family members with names became an effective way to neutralize sensitive discussions about breast cancer. A friend would call and say, “When are you scheduled to get Bobbie Sue?” (the name of my second prosthesis). What she really was saying is, “When is your mastectomy going to happen?” So it made it safe and comfortable for people to talk about.

What was your sex life like with a double mastectomy?

Initially, I felt the need to be "assembled" before my husband. I'd be half naked in the opposite direction, with only my bra in place. Then I overheard my husband telling a friend, "I'm so thankful I've still got her. I don't care how many breasts she's got, or arms or legs either." We ended up with my sex life being even better without my breasts. So how do you like that?

What has your battle with breast cancer taught you?

I survived breast cancer so I could make a difference in other people's lives. I've been on that side of the bed rail, and I know what it's like to be a patient. I truly believe I was meant to get this disease. I yearn for the day there will be a cure, and until then, I’m helping whoever needs me to fight their battle. My experience and being with them is a gift, a privilege. I wouldn’t trade it for anything.

SIGNATURE QUESTIONS

What is the belief you personally go to during times of change?

I have a parchment on my wall that I've had since I was 17. It was written by a prisoner in a German prison back in the1800s. It was written in blood on the wall, and it says, "I believe in the sun even when it is not shining. I believe in love even when I do not feel it. I believe in God even when he is silent." That and the serenity prayer always carry me through.

The best thing about change is...

...It lets us see our life in a new perspective, which initially might be scary but in the end is usually great.

What is the best change you have ever made?

I would have to say finding something to laugh about every day, because prior to my diagnosis and treatment I didn't do that. I was a very serious person.

For more from Lillie Shockney, please visit www.hopkinsbreastcenter.org.