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.

Book Review: After Breast Cancer

For those breast cancer patients finishing treatment or who have finished treatment, I highly recommend After Breast Cancer: A Common-Sense Guide to Life After Treatment by Hester Hill Schnipper. This book is filled with excellent information on what to expect after breast cancer treatment.

Many valuable books have been written on being diagnosed with breast cancer and what it is like to undergo treatments. But Schnipper's After Breast Cancer is necessary for people who have lived through treatments and now must face the very difficult post-breast cancer world.

And she should know. An oncology social worker who has worked for years helping women through breast cancer psychosocial support programs, the author found herself diagnosed with breast cancer in 1993 and a second primary breast cancer in 2005. Being on the clinician and patient sides of the spectrum, Schnipper was the perfect person to write this book.

This step-by-step primer on coping after breast cancer offers information and tips on navigating life after breast cancer diagnosis and treatments -- from the first few weeks after treatment ends to the first few months -- as well as physical and emotional recovery, fertility issues with young breast cancer survivors, and various work and family issues that survivors face.

The book reads beautifully, thanks to Schnipper's easy-flowing writing style. I couldn't put it down, and even though I have been out of treatment for years, the book resonated deeply with me. As a breast cancer survivor, I know first-hand the post-cancer fears and vulnerability the author writes about.

This book works as a type of support system for those facing a post-cancer life. Readers who are finishing treatment or have finished treatment will find this book immensely helpful and will feel that they are not alone: For many survivors, the hardest part of the breast cancer experience is acclimating to a world that mistakenly believes that once breast cancer and its treatments are "over," that it's really all "over," and the breast cancer survivor should now return to "normal."

The truth is, life after cancer is exceedingly difficult -- physically and emotionally -- and the author has the courage, honesty, and integrity to focus on this important topic.

And I would be remiss if I didn't mention the beautiful, touching foreward by the author's husband, Lowell E. Schnipper, a medical oncologist at the same hospital that the author works at: Beth Israel Deaconess Medical Center in Boston. Dr. Schnipper's foreward was so moving, it brought me to tears. As a physician and the husband of a breast cancer patient and now-survivor, he is on the professional and personal side of the breast cancer spectrum, and I cannot think of a better person to have written this foreward.

After Breast Cancer: A Common-Sense Guide to Life After Treatment is a must-read for those facing the aftermath of breast cancer. The book helps readers understand how to better make the transition from patient to survivor.

To order the book on Amazon, click here.

Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about a potpourri of topics, including motherhood and her Chinese adoption experience at http://currents-living-discovery.blogspot.com/, and her cat Hemi blogs at http://www.catterchatter.blogspot.com/. Beth teaches writing and literature at Robert Morris University in the Chicago area. She has a guest posting on The World's Strongest Librarian at http://worldsstrongestlibrarian.com/3597/sharing-a-loved-ones-pain-guest-post-by-beth-gainer/.She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.