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.

The Hoopla of National Cancer Survivors Day®

Just when the marketing of cancer feel-good gimmicks cannot get more insulting, there's National Cancer Survivors Day. Oops, I forgot to include that pesky little registered symbol.

My bad, so sad.

Once again, here is an attempt -- through a fake holiday -- to extol those who have "survived" cancer (whatever "survived" means) instead of honoring those who died from cancer or are dying from cancer.

Once again, this huge cloud of denial shrouds our very culture to the core: denial that many, many people are NOT surviving cancer. Denial that money is NOT always being funneled properly into research, but into feel-good campaigns. Denial that people with metastatic disease are NOT being honored or maybe even considered survivors.

They are forgotten. On purpose.

By society's accounts, I am a breast cancer survivor. That's how I introduce myself in social circles because it's a term that most people understand.

However, I'm not comfortable with that word, "survivor," which connotes some sort of superhero who has battled and defeated the demon known as cancer.

"Survivors" are not heroes, but our society puts us up on a pedestal -- all because we have not died from the disease...yet. Those who die from cancer are not weaker or less tenacious than those of us who "survived." Cancer can come back at any time -- and with a vengeance, no matter how hard a person tries to stay healthy. 

The problem is that on a subliminal level (or maybe not too subliminal), there's a blame game going on: those who survive did something heroic; those who don't survive just weren't tough enough.

I can tell you how I spent National Cancer Survivors Day yesterday. Irritated that such a day existed and reminded that being a "survivor" is not all it's cracked up to be. We have ongoing medical issues, as a result of harsh treatments. We are at risk for other cancers due to the very treatments designed to help us. We must deal with survivor's guilt, as most of us at least have lost someone to cancer and wonder why we survived. And the experience of having cancer is the experience of losing control of one's life.

"Survivors" can also have PTSD, some of whom must be on psychotropic medication and/or need counseling. Others may have a recurrence, thereby stripping them of "survivor" status.

Truth is, whatever the outcome, nobody affected by cancer is a hero. We are just human beings.

We don't need a Survivors Day.

We need a cure.

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. To obtain my postings regularly, please subscribe to this blog by clicking the orange subscribe button. I can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

Mind Games

I am one of the lucky people. I got to beat cancer. Or did I?

Survivors like me are besieged by mind games.

If mind games were an Olympic sport, I'd certainly sport the gold medal. When I go for my "routine" physicals, my panic can spike astronomically. My ears are programmed to hear the word "cancer," so when the news mentions "cancer," my curiosity (OK, panic) is peaked. If I overhear (OK, eavesdrop on) a conversation about someone who has cancer, I can't help but take notice.

My body has betrayed me before, so couldn't it happen again? I no longer trust my body, which in its previous life, was fit and ingested healthy foods. Now, any ache or pain that assails me frightens me because I am afraid it's cancer knocking at my door. 

Perception is a tricky thing, and doctors, society at large, and cancer survivors perceive battling cancer differently.


Many doctors see it this way: First comes diagnosis, then comes treatment, then come followups.

Society often sees it this way: First comes diagnosis, followed by treatment, and then life resumes back to normal and the former patient is "over it."

Cancer survivors often see it this way: First come diagnosis and treatment to end cancer. Then normal life as we know ends. Let the mind games begin.

 Here are just some episodes that caused me to hit the panic button prematurely:

Just this weekend my back was really hurting. So I did the only thing I knew to do: had a friend watch my daughter. Then I wept and slept. Then the pain went away, and so did my fears and pity party. These episodes are common for cancer survivors. We are lucky enough to survive cancer, but our very survival -- the one thing we fought so hard for -- is threatened by those mind games.

I went to my oncologist and he ordered a blood test, and I felt tormented about why he ordered a blood test.

Any ache or pain will set my fears off.

The longer I'm stuck in the examination room, the deeper the fear. Sometimes I want to scream, but instead I try to keep my mind occupied with useful matters.

A routine lab result showed an elevated liver enzyme. I called my doctors sobbing, only to be reassured it was nothing.

I had a broken foot, which prompted fears of all sorts.

Of course, having had cancer gives me another perspective: one of appreciating and living life to the fullest. I can slow down time to enjoy the taste of a Honeycrisp apple (my favorite apple) and gaze at my daughter, savoring all of the wonderful things and opportunities life has offered me.

Do you struggle with mind games as a result of a current or past illness? It can be cancer, but many illnesses and conditions can provoke the panic I describe above. Please share your story.

This posting is an excerpt from my upcoming book, Calling the Shots: Coaching Your Way Through the Medical System. To obtain these excerpts regularly, please 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.

What Being a Breast Cancer Survivor Means

As a breast cancer survivor, I want to usher in Breast Cancer Awareness month by noting what I have to be grateful for.

A recent TV commercial features two musicians playing instruments and singing “Happy Birthday to You.” Afterward, a message appears on the screen that many people who have had cancer are still celebrating their birthdays.

I’m one of them.

Except I have had 365 birthdays per year since I was diagnosed with breast cancer in 2001.

My perspective has changed since I had cancer and went through chemotherapy, radiation, and, a few years later, a preventive double mastectomy with reconstruction. Before cancer, I took life for granted and didn’t appreciate even the smallest, precious moments.

Since cancer, I view each day as a gift, as another birthday. I now have an uncanny ability to slow down time and appreciate life. This is what it means for me to be a survivor and thriver: not merely to exist day to day, but to see each day as something to be savored because, truth be told, no one knows when his or her last day on Earth will be.

Oddly enough, I view my having had cancer as a gift, for it has taught me many life lessons. I have learned to make friends with quality people and not waste my precious time with those who drain my energy. I marvel at my daughter and know that my time with her is a precious gift, not to be taken for granted. I don’t allow obstacles to interfere with my dreams. I not only stop to smell the roses, but I savor the scents of each season in a way I never did before. I look up at the sky, even when it’s raining, and know that life is good. And when I have bad days like everyone else, I view them as good days in disguise.

This is what it means for me to be a breast cancer survivor: not just to survive, but to thrive by relishing life’s wonders.

Those two musicians singing “Happy Birthday to You” in the commercial lift my spirits. Because as a breast cancer survivor, I know that today, like every day, it’s my birthday.

This posting is an excerpt from my upcoming book, Calling the Shots: Coaching Your Way Through the Medical System. To obtain these excerpts regularly, please 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.