The Burden of Survivorship

My oil painting: "Survivorship"

I'm a breast cancer "survivor," whatever that means. 


But I'm still waiting -- waiting for that moment when I can feel like a triumphant and brave breast cancer warrior-survivor, that ever-so-neatly-packaged archetype.


I want to live up to those expectations, you know, the ones where people tell me how brave I am, how heroic I am, how much of a role model I am. 


How inspiring I am.


I wish I could feel happy when I hear the "good-for-you-for-winning-your-battle-on-cancer" comments.


But the praises and accolades don't sit well with me. 


Surviving breast cancer is a good thing, don't get me wrong. And I survived partly through self-advocacy -- and partly through sheer luck. Random luck. 


I wouldn't trade my life for anything. But the status of "survivor" carries a heavy burden and a heavy price.


People who see me as heroic should know some things about me:


Not a day goes by without thinking about cancer. I spend enormous amounts of some energy quelling the fear welling up inside of me. I get panic attacks and have to control them with deep breathing. I worry about the toll cancer treatment has had on my body, I have body-image issues, osteopenia from treatment, chemobrain, constant abdominal and back pain from surgery, and fear of recurrence -- and this is just the tip of the iceberg.


Emotions are still raw -- even 11 years out of treatment and six years out of my double mastectomy with reconstruction.


I try to keep busy. I work hard. I paint. I write. I care for my daughter.


But I'm always looking over my shoulder. Every body ache assaults me. I wonder, did I strain a muscle, or do I have cancer? My friend Faun died of metastatic breast cancer, and she became aware of it because she had hip pain and went for a "routine" physical.  


Nothing is "routine" I've learned. I grieve for her still.


My hip hurts. Is it cancer? 


"No it's not," I tell myself, "Stop being such a hypochondriac." I take Tylenol, and the pain goes away. Ah, I'm feeling more confident about my health. Later, my hip hurts again, and the rollercoaster twists and turns in my stomach all over again.


I put off getting routine bloodwork for almost a half-year after my general doctor ordered it. I am not proud of this. But for six months, I am trembling at the thought of the lab results indicating a new problem. I finally summon up enough courage to get the blood drawn on Friday. I am not afraid of the blood draw; I'm afraid of the results. I am trying to put it out of my mind for now.


I just set up an appointment with my oncologist, two months overdue. It is so painful to pick up the phone and make the call. My heart is racing. The receptionist tells me that my oncologist ordered bloodwork and I should get there early to have it done. I numbly say, OK, but when I hang up, I sob. "Why does he need blood from me?" I keep torturing asking myself. This "perhaps routine" test has been constantly gnawing at me on my mind ever since.


I get a "routine" colonoscopy this year, and the period of time leading up to it is hell challenging, and I spent a lot of time crying about it preoccupied with it. I'm convinced the results will be bad. Luckily, they are good. I'm relieved. For now. Until the next medical worry.


Yes, I'm waiting for that moment when I can feel like a brave and strong warrior. I now know I will never have that feeling of medical and emotional security. Because I have already had breast cancer. And that forever changed things for me.


In the meantime, I'll continue looking over my shoulders, which carry a crushing burden no one should have to bear. 


For an excellent article on the complexities of survivorship, please read  Darryle Pollack's article, Surviving Cancer: It's Complicated. 

Have you been put on a societal pedestal because of cancer? How do you define survivor? Please feel free to share your experiences.


I'm writing a book titled Calling the Shots: Coaching Your Way Through the Medical System. Please feel free to subscribe to this blog by clicking the orange subscribe button. I am a professional writer and have published numerous academic and magazine articles, as well as an essay on my breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. I can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.