Salute to a Survivor

When I heard that Jennifer Lyon, a  “Survivor: Palau” contestant, died of breast cancer at 37, it triggered a lot of emotion as I’m sure it did for many breast cancer survivors. It’s always a shock to hear it’s claimed someone who’s so young, and you can’t help but feel sad for her family’s loss.

I admired her for the way she battled her cancer to a standstill for several years, and even more for the way she spoke up about her diagnosis. When she was diagnosed with stage three cancer in 2005, she said she felt something in her breast a year earlier but assumed it was scar tissue. As a celebrity, that was one of the most valuable things she could have done.

I don’t know about you, but it took me years to reach the point where I felt comfortable telling my doctor about symptoms instead of figuring I could diagnose them myself. Part of my prairie heritage is not going to a doctor if it’s not bleeding or broken. My dad might have lived longer if he hadn’t mistakenly believed his cancer symptoms were left over from a bout with West Nile.

Every time someone like Jennifer speaks up about not putting things off, it has to help. By publicly sharing her experience, I’m sure she prompted women to get something suspicious checked. We’ll never know how many, but I wouldn’t be surprised if she saved some lives.

Treatment has improved and breast cancer is being caught earlier than ever, but none of that should make us complacent. That may be why Jennifer’s death was such a jolt. It was a stark reminder that this disease is still killing women, some of whom are very young.  We need to keep supporting research and paying attention to our bodies. By doing so, we’re honoring the memory of Jennifer and too many others like her. Here’s wishing all of them Godspeed.

Breast Cancer: It’s Not Just About You

Deciding what to do when you’re diagnosed with breast cancer is one of the loneliest decisions you’ll ever make. Your doctors will give you  their best counsel, but it’s ultimately up to you.

Although you’re the star of this horror show, if you have a family, breast cancer affects all of you. Both my husband Bruce and I felt hounded by pink ribbons in the early days of my diagnosis. We decided to escape by watching the John Adams miniseries on HBO and wouldn’t you know it, his daughter had breast cancer. It was fine until they got to the 18th century mastectomy minus anesthetic. Bruce yelled at me to leave the room. When I came back, I said, How was it?” and he said, “I don’t know, my eyes were closed.”  

Bruce was more scared for me than I was for myself, although he didn’t share his fears with me until I became calmer and stronger. At one point he asked me if I would consider the double mastectomy as prevention, and asked me to think about it. I waited for about 30 seconds and said, “I’ve thought about it. No.” He told me he didn’t want me to die and I told him I wasn’t going to die and preferred dealing with one breast at a time. But first and foremost, he told me he would stand by my decision, and he’s been true to his word. I couldn’t have asked for a better partner to accompany me on the cancer roller coaster. 

Bruce was amazing in too many ways to recount here, but I’d like to share what a great source of humor he was throughout this adventure. (Yes, cancer does lend itself to humorous moments and I would urge you to take advantage of them when you can. Sometimes that’s the only power you have over a situation that sucks.)

When we were waiting for our first consultation with the doctor who would become my oncologist, I said, “Well, at least nothing can surprise me now.” (We had been assuming for two months that I would undergo radiation and had just had a different oncologist recommend a mastectomy.) Bruce leaned over, lowered his voice and said, “I’m sorry–we’re going to have to cut off your head.”

One of my favorite stories about family decision making was in the October 2009 Omaha World-Herald Healthwise supplement. (I can’t link to it for you because it’s not archived online.) The woman’s family voted on a white board posted in the kitchen with headings “Save the Boob” and “Lose the Boob.” (In case you’re curious, they voted to lose the boob.) That’s a family I wouldn’t mind being a part of.

Your turn–how did your family members handle it? How did they prop you up or make you laugh?

When Do You Become A Breast Cancer Survivor?

It took me awhile to start thinking of myself as a breast cancer survivor. I think that’s partially because I was so fortunate to have it caught early. If you’re diagnosed with stage three cancer, there’s no question you’re in a fight for your life. Because mine was technically stage zero, and safely ensconced in my milk ducts (for now, at least), I felt kind of sheepish thinking of myself as a survivor. I finally realized that while I may not have had to go through chemo to battle a cancer that had spread, I had to take action to prevent reaching that point. Five surgeries later, I feel like I earned my survivor status.

Then I started wondering when you mark your anniversary. Cancer is kind of up there with weddings, births and deaths—the dates tend to stick with you. But cancer has multiple milestones, so which one do you choose? Is it the day you were diagnosed? Or the day your cancer was surgically removed? The day you learned you were in remission, or the day you had your last chemotherapy treatment?

I asked a breast cancer survivor this question when I interviewed her for an Omaha World-Herald article I was writing on how survivors give back. She said she had that same question when she started attending A Time To Heal, an Omaha-based rehabilitation program that is designed to help women regain their physical, emotional and spiritual health after breast cancer treatment. She said they told her you become a survivor on the day you’re diagnosed. The National Cancer Institute agrees that this is when you become a survivor.

I prefer thinking of my anniversary as the date my cancer was surgically removed with a mastectomy. It might seem like a gruesome date to commemorate, but it’s the day I became cancer-free. A friend of mine, who had her five-year anniversary in October, said she also marks her surgery date.

The decision is a personal one, and you can choose which day you want to observe as the day you joined the ranks of survivors. You can choose not to commemorate it at all. But never doubt that you earned the right to call yourself a survivor.

Is Optimism A Breast Cancer Requirement?

Barbara Ehrenreich has a new book called “Smile or Die: How Positive Thinking Fooled America And The World.”  The book was triggered by her experience with breast cancer, and an excerpt called “Smile! You’ve Got Cancer” appeared in The Guardian on January 2.  

Ehrenreich is an amazing writer and she brings up a lot of good points, such as how breast cancer has become a cottage industry. Beyond that, she discusses how the power of positive thinking has become ideology in some breast cancer circles. Some women viewed her anger as “treasonous,” which I find alarming. No one has the right to tell you how you should feel when you have breast cancer. It’s kind of like saying you should be six feet tall or have brown eyes. We’re all wired differently and there’s no right or wrong way to do this.

I have to admit, I’m one of those women who feels like cancer gave me more than it took away. Doe that mean I was never scared or angry? Of course not, but on balance I’m grateful. It also doesn’t mean I handled it better than anyone else or that I think everyone is required to see the cancer glass as half full. I’m just sorry Ehrenreich had to go through so much criticism at a time when she surely didn’t need it. But the half-full glass is it prompted a highly intelligent book that is generating some much-needed discussion.

I was a mental health worker in a former life, working with people with chronic mental illnesses. One of my mentors said the trick is to be where they are, not where they’re supposed to be. Maybe that’s what we need to do for each other in Cancer World as well.