Verdict: Not Guilty

I'm not guilty.

Whew, that felt good.

Since being diagnosed with breast cancer 10 years ago, I have felt the shame and blame that accompanies so many people diagnosed with this horrible disease. Our society is inundated with information that often elicits feelings of guilt among even the toughest of us.

Through some kind of overload osmosis, various information sources tell us to feel guilty for our breast cancer. You know the all-too-familiar messages of cancer being caused by not bearing children young or not bearing them at all, not eating certain fruits and vegetables, having certain lifestyle choices, yada yada yada.

The message is loud and clear, and until recently, I've been tuned into the You-Are-To-Blame-for-Your-Breast-Cancer station.

And then there's survivor's guilt.

You see, a great friend of mine died of breast cancer young; she was a lot like me and in my same age group. I will be focusing on her story and our friendship on Oct. 13. Her death shook me like nothing else.

And then survivor's guilt entered the picture.

Because she died and I lived.


Don't get me wrong: I am glad to be alive. But for the last six years since her death, I have been plagued with the question: why did she die and why did I live? 


I was not a better person than her.


I was not more proactive in my medical care.


I was not more of a cancer warrior.

I have been haunted by her death again and again. And I feel this way about people with metastatic cancer. They are good people, proactive in their health, and yet, they are unlucky enough to get a terrible cancer card from a cruel dealer. They do not deserve to suffer from and die of cancer.

Until September 12's #BCSM Twitter chat, I was locked in a prison of survivor's guilt. This chat, whose participants I respect and greatly admire, focused on the issue of guilt.  It was an emotional, intense discussion, and for me, a truly enlightening and life-changing one.

I realized, during and after this discussion, that I had no reason to feel guilty. I am alive, so far, due to luck. And luck is something I have no control over. I did nothing wrong to get breast cancer, and I did nothing right to have lived thus far. Like others diagnosed with this disease, I just did my best to live. 

And here are things we should all perhaps keep in mind:

We have no control over who lives and who dies.

Wondering why some people live and others die is futile. The answer is out of our reach.

We are not omnipotent or in total control of our universe.

We have the power to hope and the power to help others. Human kindness goes a long way.

Since the BCSM chat, I became liberated....for now. (Of course, I never really know when that guilt monster will rear its ugly head again).

Guilt has two first cousins: shame and blame. These three culprits are all interconnected. There's no longer a place in my life for guilt and its low-life relatives.

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 Psychological Burden of Cancer

August 2 marks my 10-year anniversary. 


That date was my last chemotherapy treatment for breast cancer. 


Before cancer, I was young, fit, and health-conscious. I was naively confident that if I were proactive in my health, I would avoid getting a serious ailment. Now, with a breast cancer diagnosis, I found myself in the fight for my life and so very ill from treatments.


After my last treatment, I stood up from the chemotherapy recliner and thought I was done with cancer. So did everyone else. My phone rang off the hook with calls of congratulations. I received yummy goodies, flowers, cards, gifts, and other celebratory communications. 


In addition, doctors enjoy doing follow-up appointments with me because they consider me a success story. Our conversations are light chit-chat. My doctors are excellent because although they are optimistic about my progress, they willingly address any fears I bring up to them.


Yet I still cannot rest easy. 


Cancer did not kill me, but it has permanently affected my psyche. How can it not? When chemotherapy ended, my coping attempts with cancer actually began. And I wasn't good at coping, for I simply couldn't process what had happened to me. I could not  easily re-enter the world of normalcy, whatever "normalcy" means. 


Ten years later, loved ones see me as the cancer conquerer. Ten years later, I know I'm much better emotionally, thanks to therapeutic techniques, but I know I can never be the same. 


Too many triggers. Too many mind games. Too much has happened during this last decade:


My friend who was supposed to be a breast cancer survivor had a recurrence and died. For about three years, I took her to almost all her chemo treatments. Now I don't have her anymore, and I feel survivor's guilt.


A few months after my friend died, an MRI detected something suspicious in my same breast previously affected by cancer. The fear was so agonizing. Lucky for me, a biopsy showed it was scar tissue. Unlucky for me, more fear was deposited in my fear bank.


I had three lumpectomies and a double mastectomy with DIEP flap reconstruction. First of all, ICU was sheer anguish. More fear in the fear bank. And negative body image. I was angry to have been reconstructed in plastic surgeons' image of what I should look like. I am grateful to all my doctors for doing such an excellent job, but coming to grips with my new torso has not been easy.


I must live with fear of recurrence or a new cancer. I try my best to cope with this.


Like so many patients in the cancer world, I have fear of facing doctors, as well as getting medical exams and tests.  At doctors' offices, I use a variety of coping tools, such as listening to music, sketching, reading a novel, and positive self-talk. I also list words describing me in order to feel more powerful in a situation where I really am quite vulnerable.


I've learned that cancer may leave one physically, but it always remains in one's psyche.


However, despite the fear, suffering, and pain, I have gained a lot of insight. I savor each day. All the small moments in life are really big moments to me. My daughter's smile. The sound of my friends' laughter. The nudge of my cats' good-morning greeting. 


And I realize that the depth of my cancer-related sorrow and grief is counterbalanced by the depth of joy I experience in these moments....every day.


I am finishing a book titled Calling the Shots: Coaching Your Way Through the Medical System. 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.

Survivor's Guilt

This is how the story goes:

I had a friend around my age. She died. I lived.

I lived because she died.

Faun and I became fast friends, well, fast. We met at a breast cancer survivor's group, and even though I was the newbie to a well-established group, she and I hit it off. Turns out she was a teacher and a writer. Like me. And she was from the East Coast. Like me.

And she was a breast cancer survivor. Like me.

Or so we thought. Five months after we met (and five months after my last chemo treatment), she experienced a recurrence. Well, that's not exactly accurate. The cancer had never really gone away in the first place.

I'll spare you all the gruesome details, but I took her to chemo regularly and was there for her -- until the very end, about four years later. Ironically, those chemo days were good days for us as friends. We had hours to talk, and then I brought her home, sat on the edge of her bed, and we laughed and shared secrets for a couple of hours.

We even had plans to compile an anthology of essays and poems by a variety of people who've had breast cancer. And, of course, we'd contribute our work to the anthology. We would brainstorm regularly about how this book would evolve. Our dream of collaboration never happened, though.

She died July 3, 2005, at the age of 47.

Yet, she saved my life.

You see, six months after she died, my oncologist called to tell me that my MRI revealed something odd in the same breast in which I had breast cancer five years before. He was understandably very concerned. I was understandably very panicked.

I got an ultrasound and biopsy and had the abnormality removed. As I waited for the lab results, which seemed like an eternity, I became obsessed with all of what Faun went through. I wondered if dying young was something else we both would have in common.

During this time, I did some serious thinking that If I could get another chance at life -- if I could do it all over again -- I would get a double mastectomy instead of the lumpectomy I chose at diagnosis. I decided then and there that I would get a double mastectomy, no matter the outcome. Even if I never got a recurrence, I reasoned, the constant scares and mammograms did a number on my psyche. I thought of the rock group Boston's words: "All I want is to have my peace of mind."

I remember when the biopsy results revealed that the "abnormality" was benign -- simply scar tissue. I felt a tinge of happiness, but it was mostly fear. I knew if I didn't get my "evil twins" removed, I would get breast cancer again. I just knew it. Something was telling me that breast cancer would once again be in my future.

Fast forward to all the doctors I hired and fired and drama and trauma in order to get the double mastectomy, the topics of previous postings. After an 11-month battle navigating through the medical system, I finally found myself happily in the OR with a gaggle of doctors ready to remove my breast tissue and reconstruct my breasts from my post-menopausal belly fat.

The next time I saw my oncologist, he beamed from ear to ear, telling me that the double mastectomy was the right thing to do becauseI had many precancerous cells in my supposedly healthy breast. I most likely would have gotten breast cancer again in a few years.

I asked him, "So, I avoided death twice?"

He responded, "Yes."

Had I not seen what Faun went through, I might not have been so proactive and insistent on the double mastectomy. Her suffering and death had anchored itself in my mind and kept me fighting for the surgery.

Now, about two and a half years after my surgery, I still get back pain and have residual aches, but I refuse to feel sorry for myself. I refuse to be a whiner. I refuse to be a complainer. Oh, I have my moments, but I know each day is a gift.

I have recovered and gotten a clean bill of health. I'm grateful to be alive. At the end of this week, I am flying to China to adopt my baby daughter. And Faun's dream has lived on in me: I have been published in an anthology focusing on breast cancer.

Yet, I will always feel survivor's guilt. I do wonder why Faun died and not me. Don't get me wrong: I'm glad I survived, but at the same time, I feel guilty that I feel glad I survived.

But then I think that perhaps her spirit is watching over me, that perhaps she's my guardian angel who takes pleasure in knowing that I'm bearing the torch that is keeping our dreams alive.

Beth L. Gainer is a professional writer and has published an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She teaches writing and literature at Robert Morris College in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com. She also blogs on the adventures of her cats, Hemi and Cosette, at http://www.catterchatter.blogspot.com/.