I’m still here. But not a week goes by that I don’t see a death notice for someone with the kind of cancer I had. Some of them lived less than a year after their diagnosis. Some of them stayed healthy after their treatment long enough to hit that statistically magical five-year mark before recurring. I watched them strive to live a full life for as long as possible. Then I cried when they died.
The majority of people diagnosed with inflammatory breast cancer (IBC) with me in 1998 didn’t live three years. Even for people being diagnosed today, the death toll is high. I’ve met many of my IBC sisters in person, and I also have friends in the metastatic breast cancer community whose breast cancer was initially considered cured. I have watched their struggles in person and through online support groups. I have written way too many condolence notes to their families.
I never questioned “Why me?” when I was diagnosed. If someone had to get cancer, why not me? I knew I had no special pass to avoid hardship. However, I have often asked “Why me?” as a survivor.
I lived a fairly healthy lifestyle before and after cancer. My dinner plate has lots of veggies, but I haven’t gone all out on dietary changes such as eating all organic foods like some of my friends. I still eat too much sugar. I haven’t been consistent with exercise, the recurrence deterrent with the most evidence behind it. I’ve never been able to drop the weight I started gaining in my 30s. If I had done something special to secure my survival, I could be smug about outliving others. But I haven’t.
I used to feel quite a bit of survivor’s guilt about this. Sometimes I hesitated to talk about my good fortune to people whose cancer was gobbling them up. I could imagine them wondering “Why her? Why not me?” I still feel that way sometimes, but I’ve found some strategies to deal with survival guilt that work for me.
I don’t blame
An unfortunate trend I see is an increasing need to victim blame. One of the first questions you might hear after someone’s death is a discussion of its cause. Did the person smoke? Did she get her annual mammograms? Should he have pushed for a second opinion? Couldn’t a more positive attitude have kept her alive? These kinds of questions help us feel in control. If we can find a reason in the person’s behavior for the death, then we can maintain the illusion that we can stave off our own demise.
I know many dead people who did everything “right.” I know others, much older than I am, whose health habits are atrocious. One of my friends was talking about her father who was still smoking. She couldn’t get him to quit. His attitude was that if smoking hadn’t killed him since he started 70 years ago, why quit now? It is a mystery why some people get sick and some people get well. Yes, we can reduce risk for illness, but there are no guarantees. For me, understanding that my health is not a result of my virtue, and friends’ deaths were not their fault, helps reduce my survivor’s guilt. Some things are just random chance, nothing to feel virtuous or guilty about.
I know that not everyone has had the opportunity to live that I’ve been given. Of course, I get bogged down in daily frustrations, but I also rub my fingers over the rosemary in my garden and smell its fragrance. I flirt with the toddler in the grocery cart ahead of me in line, delighting in his laughter. I’m grateful that I lived long enough to retire and that my teaching colleagues still like to have coffee with me.
In 1998, I hoped to live long enough to see our children graduate from high school and college. I never expected to see them launch their careers, marry, and raise children of their own. All grandmas are crazy proud, but I doubt any can surpass me for the sheer joy in living long enough to enjoy grandma-hood.
I pass it forward
Pete Bevin and Menya Wolfe helped save my life by starting an online support group and website that was one of the few places to get information about IBC when I was diagnosed. Today I try to do the same with my work with the IBC Research Foundation, educating people about IBC and providing support as people go through diagnosis and treatment. On the list of charities I support are several cancer nonprofits that have helped me and that are working to end this scourge.
As a patient and survivor struggling with long-term side effects, I benefit from many people who have stepped up to help me in myriad of ways. I can’t repay all of them directly. Some have moved away, and others have died. However, I can pass along their gifts to me. I can send a card to a sick friend. I can take dinner to a new mom. I can listen when a friend is in turmoil.
I do these things in memory of Menya, Lee, Donna, Julie, Kerry, Kristi, Kate, and all the others who have touched my heart. I carry on for them in these small ways.
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Phyllis Johnson is an inflammatory breast cancer (IBC) survivor diagnosed in 1998. She has written about cancer for HealthCentral since 2007. She serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)© organization focused on research for IBC. She is a list monitor for an online support group at www.ibcsupport.org. Phyllis attends conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. She tweets at @mrsphjohnson.