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.

Faun and Me

Well, it's officially Breast Cancer Awareness Month, and I've decided to kick off the month by not waiting until October 13 to discuss metastatic breast cancer.

Because metastatic breast cancer is what kills and therefore should be at the forefront of the discussions and research on breast cancer. And because mets should not be short-changed by having only one day of this month devoted to it. Our society prefers the real feel-good survivor stories, but people with metastatic breast cancer are getting short-shrift, and that's unfair. 

The following is an exceedingly difficult story to write, for it is exceedingly personal, involving the loss of my very good friend, Faun, to metastatic breast cancer. Until now, I have never written about it. But I realize now is the time.

Years ago, Faun and I meet at a local support group, ironically titled "Post-Breast Cancer Support Group." She is already part of this established support group, one of those rare groups where the participants became friends. They all eat out and shop together and call each other on the phone. The support group itself, though, is moderated by a social-worker-breast-cancer-"survivor," and focuses on the physical and psychological aftermath of cancer.

To join this group, there is one criterion: You need to be physically done with breast cancer. (Yes, ridiculous looking back, but there you have it.)

I am a newbie to the group. Facing my last chemotherapy session the following day, I'm eager to join so I can know what to expect after I'm done with cancer. (Yes, ridiculous looking back, but I'm new to understanding the nature of breast cancer then.)

Faun is part of the group, and she and I hit it off immediately. We have so much in common: We are both originally from the East Coast and are college professors in English, as well as writers. Each of us has a brother whom we are close to. We are in the same age range. We even look a little alike. We can't stop talking to each other, and we exchange phone numbers and e-mail addresses. We agree to get together -- just the two of us -- for dinner.

Well, life gets busy for both of us, and a few months go by. I finally e-mail her and ask her if we could meet for dinner. She agrees, but we are having difficulty coordinating what works for both of us.

Then I don't hear from her for awhile. She stops coming to our monthly support group meetings. She doesn't answer my e-mail. 

Another support-group member calls me and tells me that Faun had gone to the doctor thinking she had arthritis in her sore hip, but it turns out that even though she was once deemed cured of breast cancer, the cancer has now been found in her bones. Faun is coming over to this support member's home tonight; they are going out to dinner. Would I like to join them?

I do. We hug Faun, and all three of us hang onto the belief that breast cancer that's metastatized to the bone can be treated as a long-time chronic disease. (Misguided, but that's what we believe.) We all have hope. Faun will need chemo again. Her chemo sessions will take place on Fridays. As luck would have it, I am off from work on Fridays. I offer to drive her to and from chemo and keep her company during her treatments.

She's a bit tentative, and I can tell she feels more comfortable with closer friends taking her to her chemo sessions. I understand.

The next week she calls me, telling me one of her friends can't take her to her treatment. Would I mind if she took me up on my offer? Of course, I would take her this time.

However, what starts as a one-time chemo trip turns into three years of taking her to and from chemo treatments for many, many Fridays. And I don't mind at all.

Her chemo sessions weaken her immune system but strengthen our friendship. They give us an opportunity to have hours of conversation. When she feels like sleeping, I pull out papers to grade or a book to read. I always buy her lunch and we have "fine dining" in the chemo room. After I drive her back home, she always invites me in, and we spend hours talking about literature and looking over her book collection. She shows me the textbooks she has written. I am impressed.

We talk about how nice it would be to co-write a textbook and maybe even a book on breast cancer. It becomes our dream.

We also confide our deepest secrets to each other. Before she tells anyone in the group, she tells me she is dating someone. I'm thrilled for her.

A few weeks later, Faun calls me distraught. The cancer has now metastasized to her liver. She cries, as she tells me her oncologist is telling her she has only five years to live, maximum. She begs me not to tell anyone else in the support group about her death sentence, and I agree not to disclose this.  I ask her to see my oncologist for a second opinion. She does; he tells her that she is very ill and there are no guarantees, but he will try his best. He adds that during his career as an oncologist, he has seen some amazing things. She hires him as her doctor.

Now I'm taking Faun to chemo at my hospital's Cancer Care Center, and I'm having flashbacks of when I sat in this chemo chair, that chemo room, etc. But I am doing this for Faun, so I just allow myself to be present with her and mindful about how wonderful our relationship is.

My former oncology nurse and my oncologist happen to see me and wax poetic on how great I look. I feel guilty.

Over the years, the chemo has been taking its toll on Faun. She is walking one day, and her leg just breaks and, as she describes it, "It felt like the wind was knocked out of me." She hardly recognizes herself in the mirror. Her hair is gone. She is sick so often. Her immune system is compromised.

Our support group rallies behind her; we each make tolerable meals for her and put them in plastic containers. When she's done with the meals, we collect the containers, wash them, and put new meals in.

Faun's love life is better than her medical one: she marries the man she's dating, and they buy a house. Our group throws a shower for her. And she gets a new job as a professor at a different college. Her zest for life is wonderful.

However, her last year of life is hell. She spends half of her married life in the hospital. I visit her whenever I can. When I'm sick, I must stay away, as she has no immune system and is in the isolation part of the hospital.


Some visits find us in animated conversation; other visits find me reading a book by her bedside as she sleeps. Although she looks way too old for her young years, I still see the beauty that is within her.

She is still my Faun.

She finally is able to come home to recover. My last visit with her was in her bedroom. She was sitting up in bed, chatting happily, and comically ordering her husband to get us refreshments. Summer is almost here and wouldn't it be great, I suggested, if we painted and sketched outdoors in her backyard on my next visit? We agree to do that. 

A few weeks later, Faun calls me and sadly tells me that the cancer has metastasized to her brain. Would I be willing to drive her to chemo again? "Absolutely," is my response. She is understandably angry at her situation and frustrated....and tired.

And somehow I know this is our last conversation. I say, "I love you, Faun." And she replies, "I love you, too."

These were the last words we said to each other. A couple of weeks later, on a beautiful July day, she died. Breast cancer brought us together, then breast cancer separated us.

We had plans to co-write a book on breast cancer. Now I'm writing it alone.

To this day, I am still devastated by this loss. To this day, I am incensed that not enough funding goes into breast cancer research.

And, to this day, I am infuriated at all this pink hoopla that trivializes the death of so many people.

Ludicrous, isn't it, that our culture likes to neatly compartmentalize diseases into their own months? Like any disease, breast cancer is not neat and certainly cannot be compartmentalized. Truth is, this disease affects us year-round.

Do you have any stories of metastatic breast cancer to share, whether it be your own or that of someone you know? I would like to hear from you.

What do you think about Breast Cancer Awareness Month?

Other insights or stories related to breast cancer are welcome.


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.

Heroic Moments

Readers of my blog know what I've endured as a cancer patient and my gripes about the medical system and uncaring medical personnel. But there is something I've kept relatively quiet about -- until now.

Throughout my treatments, I was alone.

Alone.

See, my parents were devastated by the news of my cancer diagnosis and couldn't come with me during chemo and radiation and surgery. I no longer harbor resentment because I know they were suffering and so devastated by my illness. They just couldn't deal with it. I have since put that all behind me, and my parents and I have a close relationship now.

During this darkest period of my life, my then-husband refused to go to chemo sessions with me. He refused to go to my MRIs. I drove myself to chemo and radiation, and I drove myself back.

He also refused to work.

I worked two jobs -- while undergoing chemo and radiation simultaneously -- just to keep from losing our condo and having our car repossessed.  (Only took one sick day.) Success with the condo, no success with the car.

I walked everywhere even though I felt like sh**, and then I walked away from the marriage.

Yet, although I was technically alone, with the exception of a few close friends, I encountered many unexpected "heroes" -- those who nurtured my aching soul and made me realize I really wasn't so alone.  I am so grateful to them for those special moments that helped me heal emotionally. 

My medical oncologist. After crying to him about chemobrain, he held my hand and convinced me I wasn't stupid. He told me he cared about me. He became my hero that day.
My radiation oncologist. With her sunny disposition, a kind smile on her face and a wicked sense of humor, she made me laugh. I appreciated that moment when she was talking with another doctor, and I had told the nurse that I had a fever. The nurse told my radiation oncologist, and she immediately ended her conversation with the other doctor to tend to me.  Once she said, "You're so sweet; I just LOVE you!"
Nurses. During my biopsy, nurses rubbed my legs and called me "honey" and "sweetie." I needed to hear such tender words while I was feeling so vulnerable. And I want to especially thank the nurse who, during one of my meltdowns a few months later, held my sobbing self in her arms and rocked me like a baby. She gently wiped the tears from my eyes.

My chemo nurse knew I had nobody with me, so she tried to take time out of her crazy-busy schedule to sit down with me and just chat. She told me all about her life, her family, and we laughed a lot.

My surgeon. While he was performing my biopsy, I kept telling him that I didn't want it to be cancer. He said, "I don't want it to be cancer either." I appreciated his humanity.
The American Cancer Society. This organization provided a counselor who would coach me through the treatments. We spent hours on the phone.
My primary care physician. She referred me to all my great doctors and was working behind the scenes to ensure I got the right doctors. She spent a lot of time on the phone with me, as well.

I also found heroes in the extraordinary people I shared my chemo room with.

At first I didn't like the idea of sharing a room with other chemo patients. But in my case, having nobody with me, it was a blessing to be in the room with others. There was the man who served during World War II and was telling me all about his experiences. He told me that it was a shame I had cancer so young. I appreciated his empathy, and I hung onto every word of his war stories.

No matter whom I shared a room with, these patients -- upon finding out I was alone -- would try to cheer me up, even as chemo was being administered to them. They would share stories about their lives, and their family members would get me things to drink and would encourage me to stay healthy.

The most poignant experience I had in the chemo room, however, was when I shared it with a young woman whose breast cancer had spread. Things did not look good for her, but her parents were there by her side. They told me that she was their only child and they so loved her, so of course they were with her throughout all her treatments.

And, get this, despite their daughter's dire situation, her parents became my guardian angels that day of chemo, tending to both of us. They made sure I had a blanket, offered me jelly beans, got me things to drink, helped me navigate my way to the bathroom, and were so attentive to me, that I realized they had adopted me as their second daughter that day.

I will forever remember their kindness.

I am grateful to all my heroes and realize that, because of these wonderful moments, I was never really alone.

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.

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.