By Pamela Grossman
Tuesday, November 27, 2012
If the breast cancer you had comes back somewhere else in your body, you lose the "survivor recognition" stripes gained by years of good test results. Suddenly, you have something incurable that no one really wants to discuss.
Credit: Rebecca Ehrmann.
The authors dedicate this article to Nicole Stagner McMaster: March 22, 1974-Nov. 21, 2012.
(WOMENSENEWS)--Breast cancer survivors can become stratified by clinical test results, and these divisions can seem truly harsh and ostracizing when someone gets an unfavorable scan or biopsy.
I've asked my friend Sarah Polzin Schultz and her mother, Sheila Polzin, to discuss the social, communal and even linguistic issues of living with Stage IV cancer--issues they face first-hand.
Sarah and I were diagnosed with breast cancer in 2008, within months of each other and at a similar stage of disease. We "met" online through the Young Survival Coalition and quickly became friends (even though she's in Wisconsin and I'm in New York) as we faced surgeries, chemo and various treatment decisions together.
I loved her spirit and sense of humor. She once posted to our bulletin board a twist on the "Mister Rogers' Neighborhood" theme: "It's a beautiful day in the chemohood . . . A beautiful day for some chemo!" I had Sarah's version in my head the rest of the day.
A year or so later, I wrote that I was hesitant to attend a high school reunion due to my awkwardly growing-back "hairstyle." I feared that those who knew I'd had cancer would pity me, while those who didn't would wonder why I'd made such an unattractive choice. "I look incredibly frumpy!" I complained. Sarah understood completely, responding, "I feel like frumpy's homely sister!" But she encouraged me to gather my confidence and attend--which I did, shocking myself by honestly enjoying the night.
In May 2011, I was sitting at my desk at work when I got an email. Sarah had a very bad cough and doctors had prescribed antibiotics. We all hoped this would be a simple fix; but it wasn't. She'd had a chest scan and she was writing to say the results looked terrible. Even before a biopsy, her doctors were quite sure cancer had come back in her lungs. Sarah would be heading back into treatment--and into an entirely new relationship with the "survivor" world.
Schultz: I will never forget the first time I felt like an outcast within the breast cancer community. I was attending a fundraising walk, surrounded by thousands.
The survivor-recognition portion of the event had survivors standing under banners proclaiming their years of survival. Previous years had me proudly standing under the "1-5 years" sign and embracing the other women in my section. This year, I froze. I had been diagnosed with a Stage IV recurrence six months before and didn't know where to stand. I didn't consider myself a survivor. I was incurable. So where did the metastatic ladies go? Where was the banner that proclaimed "Still fighting for my life"? I had no place in this sea of pink.
Grossman: When Sarah told me how lost she'd felt then, I was appalled. I said what I think any friend would: "You always have a place right next to me."
Schultz: There seems to be a push by the breast cancer community to embrace survivor-based terminology. I hear things like, "You are a survivor because you survived today." Is that how we define survivorship? In a society that seems to label everything, we stumble when it comes to defining those who will battle cancer for the rest of their lives.
Grossman: I myself have used the word "survivor" rather freely. The day after I was diagnosed, I went to a discussion group at a local support center. I had previously volunteered there, so we were familiar with each other, but they were surprised to see me at this meeting. I said, "Some of you know me. My name is Pam, and I am now a breast cancer survivor of one day."
But Sarah's point cannot be ignored. After treatment, neither of us had cancer visible in our bodies. We had reason to believe that we never would again. With one piece of news, Sarah's circumstances changed; she had Stage IV cancer. Our society doesn't want to describe her new situation and, I think, doesn't particularly want to think about it either.
Schultz: As I began asking my metastatic friends, I found I was not the only one who resisted the label of "survivor." In fact, it is often met with snarls and snarky remarks. The definition of "survivor" is: a person who remains alive in an event where others have died. How does that apply to the incurable?
Grossman: And why do some people remain cancer-free after treatment, while others do not? If only we knew; everyone would follow the "correct" path and never have cancer again. But this answer is not known.
People sometimes congratulate me on my current cancer-free state. I want to say: If you praise what I've done with my life, before or since my diagnosis, I'll accept that. I'm proud of my accomplishments (and I'm proud of Sarah for hers). But don't congratulate me on not having visible cancer. It's a biochemical situation that exists for reasons that neither I nor the world's medical experts can yet identify.
Others ask if I have what's called "survivor's guilt"--as I'm here, while others are not. The answer is no. What I feel is "survivor's rage" and, even more, "survivor's grief." Cancer therapies are often lastingly, and many times permanently, damaging to patients. Why, in spite of all efforts made and hardships faced, are far too many amazing loved ones now gone? Hopeful and vital, determined and adored, they did everything possible to live through cancer.
I rarely discuss these losses anymore with friends who have not had cancer. How could I explain how frequently they occur?
Polzin: I struggle to respond to the question, "How is your daughter doing?" The truth is, I don't know.
What people want to hear is that "she is doing well." To say this, however, feels as if I am misleading people. It feels like a betrayal of both Sarah and the breast cancer community as a whole.
I stand off-balance, one foot in this community and the other in the cancer-free public, not really belonging to either. From here, however, I am able to see the disconnect between these worlds. Until we are all brave enough to face the fact that this disease can metastasize--and is labeled incurable when it does--we won't find the right words to talk to each other about it.
Schultz: A psychosocial worker said to me, "You have a unique opportunity. As each discussion ensues, you can change the language and make it better." Maybe that's the opportunity that's given to all who want to change how cancer is viewed and discussed.
Grossman: Sheila goes with Sarah to her treatments. Picture it: The two of them, facing it all, even making jokes together.
I think about them all the time. Two beloved women. A mother helping her daughter treat Stage IV cancer. So much grace and love. I don't want to be trite or overly metaphorical in the face of the pressing issues at hand, but I want to say: To me, that is survival. That is full of life. And to me, it always will be.
Pamela Grossman is a Brooklyn-based writer and a patient advocate, through organizations such as the Young Survival Coalition and SHARE. Sarah Polzin Schultz is a stay-at-home mom and community representative for Stillwaters Cancer Support Center. Sheila Polzin is a registered health information technician professional in the Milwaukee area and an advocate for education regarding metastatic breast cancer.
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