Breast Cancer and Loss of Control

I know this comes as a big shocker, but there is yet another organization interested in breast cancer awareness for the 40-and-under crowd. Founded in 2001, ironically, the same year I was diagnosed, this entity's goal is to "infuse sass and style into the cause" and say "Adios [to] fear-based campaigns."

I was younger when I was diagnosed, but I didn't feel sassy nor sexy. My world was too busy spinning out of control. 

OK, I'll say it ad nauseum: Breast cancer is not sexy, cute, fem, sassy, and stylish. No other disease is associated with these terms. And I take offense to this because such levity toward breast cancer shows disrespect to people afflicted by this disease.   

The authentic breast cancer experience is one of absolute fear, chaos, anguish, and loss of control.

Here are just a few ways we in the breast cancer world have lost control of our world:

Body Betrayal, Part I: Our bodies have betrayed us. We are in the prime of life -- until we find out that something has gone awry and now threatens our lives. We have cancer. 

Body Betrayal, Part II: Treatment causes the body to betray itself -- from hair loss to vomiting, from fatigue to intestinal and bladder problems. I'll spare you all my details, but suffice it to say, rather than feeling sexy and sassy, I was beyond ill, even though I didn't lose my hair. I had chemotherapy and radiation simultaneously and could barely function.

The chemotherapy caused cognitive dysfunction. I used to take my brains for granted, until my brains turned to mush from treatment. Depression and anxiety set in. To make matters worse, my white blood cell and red blood cell counts ran amuck, another thing that was out of my control. 

One of my best friends whom I met through a breast cancer support group was Stage IV. I took her to many of her chemo treatments. Turns out the chemotherapy was hardly therapeutic: My friend's bones would break and the cancer raged on. I got to see firsthand how much she suffered before she died. I will always miss her. 

Medical Schedule Syndrome:  One of the hardest parts for me was shelving my life to fit in all the medical scheduling. It didn't matter whether I had a meeting or deadline at work; I was to drop my entire work and personal life to come in for chemotherapy and radiation and for bloodwork and doctor's appointments. My life was no longer my own and centered around the monthly medical calendar the oncology nurse gave me.

Rejection Syndrome: Oh, and while we are going through the hell of being diagnosed and treated, some of our friends decide to reject us. They forever leave our lives, just when we need these people the most. Most of my friends were wonderfully supportive, but I experienced the heartache of people rejecting me. I remember thinking at the time that the rejection was worse than the disease itself.

Body Image Syndrome: The lumpectomy is designed to conserve breasts, but too often, the lumpectomy disfigures them. That's what happened to me. Truth be told, I wasn't feeling too sexy about my body. Eventually, I got a preventive double mastectomy with reconstruction. Some individuals were more than envious that I would get "a boob job and tummy tuck" at the same time. A few insensitive idiots jokingly asked if I could get an upgrade.

After spending hell in ICU, I had a long recovery process. In fact, I am still in constant pain, and even though my doctors did a great job at reconstructing my torso, every day my scars remind me of cancer. Oh, and our breast-obsessed society reminds me, too.

Mind Games: Whatever the medical outcome, mind games and triggers continue to plague us, where we wonder whether any ache or pain is due to cancer.

I don't think any of these "infuse sass and style into the cause." Yet society keeps telling us otherwise.

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.

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.