Cancer and Emotional Dependency

I am writing this post a couple of days later than I planned for Mental Health Blog Day. I thought, what a great idea, to blog about something so important -- mental wellness, still considered a taboo topic in our society.


Cancer's physical repercussions are constantly part of the cancer dialogue. The toll this disease takes on our mental health? Not so much. Well, to break the taboo ice, here's my story of how cancer has affected my emotional health and made me dependent on my healthcare providers -- something not unusual in the cancer world.


When diagnosed and going through treatments, I think of only one thing: how to stay alive. I do what my doctors and oncology nurse tell me. 


I follow their orders. 


I don't want to see them so regularly. But I have to.


I'm in a primal state of being. 


I'm in survival mode.


My treatment regimen is brutally inhumane: chemotherapy and radiation during the same period of time. When radiation ends, my chemotherapy will continue awhile afterward. I don't want to be in this situation.


But my oncologist is kind and decides that this treatment is most likely to save my life.


I mindlessly drive myself to radiation and chemotherapy treatments and focus on one day at a time, one treatment at a time. One foot at a time as I walk. 


One breath at a time. 


I have no  energy to do the things that once seemed so simple to me, things I took for granted: walking, talking on the phone, reading, writing, having a bowel movement. 


I continue working a full- and part-time job and take only one sick day. I use my well-saved-up vacation days for chemotherapy. 


Doctors schedule me for treatments, and I can't say "No, that date doesn't work for me." My life now belongs to them.


I collapse into anxiety and depression. My life is reeling out of control, and all I do lately is cry to doctors and nurses. They all hug me and hold my hand. They try their best to make me feel better. It helps.


Finally, the big day comes. 


Graduation.


Treatment is "over," and I am free of the barrage of doctor's appointments -- for now. 


Friends and family are celebrating that I'm "done" with these major treatments and therefore "done" with cancer.


In a strange twist, I feel even more anxiety and depression than I did during treatment. I want to be getting radiation and chemo. I don't want to be "done." The fact that routine followups will be part of my care plan does not comfort me.


I need my doctors. I want them to see me everyday. I want to live right across the street from the hospital in case I need medical help. 


I miss my radiation oncologist and her beautiful, cheerful smile. I miss radiation, the daily care that the loving staff gave me. Why should I care that I was burnt to a crisp? I miss seeing my medical oncologist. All I want is the security of seeing my doctors.


I miss being closely monitored. I feel hurt, upset, angry, rejected. 


I feel like an astronaut in space, and my doctors are in the space shuttle. I feel that my lifeline has been severed, and I am floating away in space, begging my doctors not to let go of me. 


"Don't let go of me. Just don't let go."


But they let go, and my forced re-entry into the world is anything but stable. As I land into a sea of turbulence, I realize the world has not changed since my diagnosis, but I sure have. 


I am afraid to face the world and don't know how to process what had just happened to me. Life during treatment was in some ways easier because I just had to "do," not "process."


Somehow I've managed to survive. Because my life now belongs to me. 


And I've had to let go. 



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.

Judging a Book by Its Cover

During chemotherapy, I didn't lose my hair. 


At the time, I was relieved. 


But in hindsight, I wish I would have shaved my hair and eyebrows at the time. I would then have donned my bald head, forcing people to see breast cancer up close and personal. 


Because my not losing hair caused many to turn a blind eye toward my credibility as a cancer patient.


While some people took my illness seriously, others did not. I looked like everybody else, so the ugliness of my disease was not apparent. These individuals should have been in tune with my suffering, but instead they perceived me as the poster child for the "good cancer." 


The happy warrior.


The brave, heroic woman.


The every-stereotype-you-can-think-of happy cancer patient.


With my full head of hair, people could ignore the physical and emotional toll that breast cancer and its treatments heaped upon me.


Many told me I looked good (the standard, albeit awkward, line) -- but truth be told, I did look good. I had my hair, my eyebrows, my eyelashes. Oh, and I lost all that weight. Some told me they envied my figure. A few insensitive dolts told me how grateful I should be that I didn't lose my hair.


Yes, I. should. be. grateful. 


I had a full head of hair. What else could a gal with breast cancer ever want? 


Never mind I endured a grueling treatment of chemo and radiation during the same time period; never mind that while my particular chemo regimen didn't target my hair follicles, it targeted my digestive tract and I felt I was imploding; never mind that my cognitive dysfunction (aka chemobrain) caused me non-stop distress; never mind that it was so hard to put one foot in front of the other when walking slowly; never mind that I was beyond the point of illness; never mind that I had to be rushed to the hospital; never mind that I was scared of dying young.


Damn, I looked good. 


Because people tend to judge a book by its cover. If you look well, you are well. And I looked very well, indeed. 


I am not trying to diminish the experiences of people who lose their hair during treatment. I imagine it must be horrifying, and if it had happened to me, I would've been upset. I'm just expressing another point of view, one of a person whose treatment did not result in hair loss. The viewpoint of feeling isolated and diminished by others who didn't "see" me as ill.


And I want to end with a terrific quote from a recent Nancy's Point posting, where author Nancy Stordahl sums up the hair issue for those of us who did not lose hair from cancer treatment:

"I’ve discovered that hair loss is a sensitive topic even for those with cancer who have NOT lost their hair. Really, how can this be you might ask?

If you have cancer and still have your hair, you can’t really be all that sick, right?

Don’t you have to 'look sick' to really be sick?

Wrong."

Did anyone perceive you as not being sick even if you were? Feel free to share any of your or loved one(s) experiences.

I'm writing 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.

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.