The Burden of Survivorship

My oil painting: "Survivorship"

I'm a breast cancer "survivor," whatever that means. 


But I'm still waiting -- waiting for that moment when I can feel like a triumphant and brave breast cancer warrior-survivor, that ever-so-neatly-packaged archetype.


I want to live up to those expectations, you know, the ones where people tell me how brave I am, how heroic I am, how much of a role model I am. 


How inspiring I am.


I wish I could feel happy when I hear the "good-for-you-for-winning-your-battle-on-cancer" comments.


But the praises and accolades don't sit well with me. 


Surviving breast cancer is a good thing, don't get me wrong. And I survived partly through self-advocacy -- and partly through sheer luck. Random luck. 


I wouldn't trade my life for anything. But the status of "survivor" carries a heavy burden and a heavy price.


People who see me as heroic should know some things about me:


Not a day goes by without thinking about cancer. I spend enormous amounts of some energy quelling the fear welling up inside of me. I get panic attacks and have to control them with deep breathing. I worry about the toll cancer treatment has had on my body, I have body-image issues, osteopenia from treatment, chemobrain, constant abdominal and back pain from surgery, and fear of recurrence -- and this is just the tip of the iceberg.


Emotions are still raw -- even 11 years out of treatment and six years out of my double mastectomy with reconstruction.


I try to keep busy. I work hard. I paint. I write. I care for my daughter.


But I'm always looking over my shoulder. Every body ache assaults me. I wonder, did I strain a muscle, or do I have cancer? My friend Faun died of metastatic breast cancer, and she became aware of it because she had hip pain and went for a "routine" physical.  


Nothing is "routine" I've learned. I grieve for her still.


My hip hurts. Is it cancer? 


"No it's not," I tell myself, "Stop being such a hypochondriac." I take Tylenol, and the pain goes away. Ah, I'm feeling more confident about my health. Later, my hip hurts again, and the rollercoaster twists and turns in my stomach all over again.


I put off getting routine bloodwork for almost a half-year after my general doctor ordered it. I am not proud of this. But for six months, I am trembling at the thought of the lab results indicating a new problem. I finally summon up enough courage to get the blood drawn on Friday. I am not afraid of the blood draw; I'm afraid of the results. I am trying to put it out of my mind for now.


I just set up an appointment with my oncologist, two months overdue. It is so painful to pick up the phone and make the call. My heart is racing. The receptionist tells me that my oncologist ordered bloodwork and I should get there early to have it done. I numbly say, OK, but when I hang up, I sob. "Why does he need blood from me?" I keep torturing asking myself. This "perhaps routine" test has been constantly gnawing at me on my mind ever since.


I get a "routine" colonoscopy this year, and the period of time leading up to it is hell challenging, and I spent a lot of time crying about it preoccupied with it. I'm convinced the results will be bad. Luckily, they are good. I'm relieved. For now. Until the next medical worry.


Yes, I'm waiting for that moment when I can feel like a brave and strong warrior. I now know I will never have that feeling of medical and emotional security. Because I have already had breast cancer. And that forever changed things for me.


In the meantime, I'll continue looking over my shoulders, which carry a crushing burden no one should have to bear. 


For an excellent article on the complexities of survivorship, please read  Darryle Pollack's article, Surviving Cancer: It's Complicated. 

Have you been put on a societal pedestal because of cancer? How do you define survivor? Please feel free to share your experiences.


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.

It's Only Words...

"It's only words, and words are all I have

To take your heart away..."

These lyrics are from the Bee Gees' song "Words," a simply beautiful ballad. First of all, my closest friends and family know that the Bee Gees has been my favorite musical group forever. Their words and music -- on more occasions than I can remember -- have taken my heart away.

When Robin Gibb died of metastatic cancer, I felt so saddened for him and his family -- and I felt the loss deeply, as I will always feel connected in some way to the Brothers Gibb.

I took Robin's death personally. Damn cancer.

Marie at Journeying Beyond Breast Cancer wrote a wonderful post about how media reports said that Robin "lost his battle" with the disease, and she pointed out that the cancer vocabulary taints how society views cancer with all the warrior/battle/victor imagery. Then AnneMarie of Chemobrain...In the Fog With A.M. From BC 2 AD created an excellent prompt for posts on what words really agitate us, irritate us, or just royally piss us off.

So, following AnneMarie's lead, here is a list of insensitive, ridiculous cancer-related and adoption-related remarks that people have said to me that launch the stupid-o-meter into space:

On Cancer:

"You're lucky: you have the best cancer" (Are there any good cancers?)

"You don't look sick." (And you don't look smart.)

"You lost weight. What are you complaining about; you have a nice figure." (Yes, it's that no-food diet, thank you very much.)

"Don't take this the wrong way, but you are luckier than all of us who aren't getting two vacation days off a month [for chemo]." (WTF?)

On Adoption:

"Your daughter looks just like you, especially the eyes." (My Caucasian self got on a plane to China in order to adopt my..uh...Chinese daughter. We look different, and [with a Stuart Smalley pause] that's okay.)

"I wonder if she misses her real mother." (Hullo. Her real mother is ME. I'm the one up late at night with a sick child; I'm the one tending to her bruises, and I'm the one she clings to in times of stress. If that's not a real mother, then I don't know what is. I'm the only mother she has known. And the last time I pinched myself, I hurt, so I must be real.)

"She's a China doll." (Correction: She is from China, not made of china, and she's not a doll.)

"I bet she was expensive" (I didn't "buy" her. And I don't go around asking people what they spent birthing their biological children).

So for those who think their insensitive remarks are only words, they might want to start actually thinking. There's no such thing as "only words" -- except in a remarkable Bee Gees song.




My real daughter



The lion is fake.

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.

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.

Cancer Fallout

For those Desperate Housewives fans, a storyline a few years ago featured one of the main characters, Lynette, having cancer. I cried watching her deal with diagnosis and go through chemotherapy. 


However, when her treatment ended, so did the cancer storyline. 


She was not only "cured," but she had no physical and psychological effects from the devastating disease and treatments. And guess what? Her husband and children put the cancer behind them, too. Cancer was so over, that it was time to move on to other plot lines of dysfunctional proportions. 


We in the cancer world know better. We know that cancer -- whatever the outcome -- affects us for the rest of our lives. Like a nuclear fallout, the fallout from having cancer is huge. Storylines like that of the Desperate Housewives post-cancer episodes do the public a disservice: they teach us that if we are lucky enough to have the status of "cancer survivor," then cancer should be eradicated from our history. 


Someone once told me that I had to "get over" this thing (meaning the cancer), as it was in the past. Other people told me how lucky I was to have breast cancer, the "good cancer."


What loads of sh*t.


To this day, people admire me for "beating" cancer. 


Truth is, breast cancer has beaten me up pretty badly.


OK, it's a given that diagnosis and treatment were hell, so I'm fast-forwarding to what my "post-cancer" life is like. Overall, I am grateful to have survived thus far, and I enjoy each day, or try to, because I know how fragile life can be -- and I know how close I was to losing my life. 


However -- not to sound ungrateful here -- my cancer treatments set off a chain of events: side effects such as significant bone loss, terrible abdominal and back pain from DIEP flap surgery, chemobrain, fears of recurrence -- especially when I have aches and pains, as well as psychological lows and flashbacks. And then there's that pang of fear that strikes me each time I have a follow-up with a doctor. 


But I'm just expected to "get over cancer" because it's in the past. 


Huh? 


Why do people feel the need to sweep these experiences under the ever-so-tidy carpet of denial? Maybe it's because they want to live in a land where we all live in gingerbread houses.


Well even gingerbread houses rot.


Having cancer is like being on a doomed train. If the first car derails, there are repercussions for the other cars. 


In the meantime, I will ignore the "get over it" and "it's in the past" comments and go on with what's left of my life. We only get one life on Earth, so it's our duty to live it to the best of our abilities.


For another post on the effect of a cancer diagnosis and subsequent treatment, see Nancy Stordahl's excellent post, Cancer and the Domino Effect. 


What are your cancer fallout experiences? Has anyone tried to minimize your cancer experience? All rants 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.

In Memoriam

Early this week, the world lost two incredible women to breast cancer, Rachel Cheetham Moro and Susan Niebur. These women's presence was deeply felt on the blogosphere, but most importantly, we in the online community came to regard them as friends.


We collectively mourn.


If you have not visited their blogs, please do so. I have provided the links above. Rachel's and Susan's blogs are filled with energetic writings about living with breast cancer.


Whenever I feel grief, I read the poem "In Memoriam" by Lord Alfred Tennyson, my favorite poet. It is a very long poem, but each word is important; in it, he works through his grief of losing a dear friend. I took a small excerpt that seems so comforting at this time.


"I hold it true, whate'er befall;
I feel it, when I sorrow most;
'Tis better to have loved and lost
Than never to have loved at all."


So many bloggers have written outstanding tributes to these remarkable and brilliant women. Here are just some. If I have left anyone out, please feel free to put your posting and URL in the comments section.


Our Virtual, Very Real Friend Rachel by Jody Schoger


One Fateful Day in February by Nancy Stordahl


Susan and Rachel by Katie Ford Hall


For My Blogging Sisters by Stacey of Bringing Up Goliath


Rachel Cheetham Moro 1970-2012 by Gayle Sulik 


For Rachel with Unending Love and The Same Love For Susan Just Hours Later by AnneMarie of Chemobrain...In the Fog with A.M. From BC 2 AD


Memory Pools from Ronnie of Being Sarah


I Spoke Too Soon by Renn of The 'Big C' and Me

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.

Lost in Translation



"Diagnosis"

I wrote this piece the year after my double mastectomy with reconstruction. Before my surgery, I was already grappling with body-image issues due to a lumpectomy-disfigured breast. I thus decided to enroll in a figure-drawing class to help me work out these issues. I would then interpret the drawings that seemed to translate to breast cancer and convert these sketches into oil paintings. I anticipated that this exercise would heal my psyche after the double mastectomy, but I was in for a surprise, as this narrative relates. The oil paintings are my own works of art.

I’m sketching a nude female in my figure drawing class. Each pencil stroke evokes waves of grief and despair. Tears flood my eyes, and I no longer see her clearly.



Just as well.


Pre-double mastectomy, this model was my favorite one to sketch. She has full breasts and a sculpted athletic body. She is better than a supermodel – she’s the Super Natural Woman with a Shakira-hips-don't-lie body. Boasting distinguishable shapes and forms, she is an artist’s dream.

A year after my reconstructive surgery, I finally feel physically and emotionally well enough to go back to class.

Or so I think.


Scratch, scratch, scratch, scratch. Students are frantically drawing. Some male students are greedily eyeing her. Between her poses, they even converse with her. She laughs, tossing back her head with confidence. Renewed grief and envy roll down my cheeks, as I think of my extensive torso scars. 

I'm not exactly a work of art.


I fidget at the easel, lost, wondering if the model appreciates her body, wondering if she feels lucky that she still has the breasts she was born with. Wondering why I can no longer remember what my life was like pre-cancer diagnosis.


I tell myself I should be feeling happy; after all, I’m alive. That I should be grateful for the energy to draw again, let alone be back in art class.


I reluctantly glance back at the model’s breasts and wince, as I recall that a double mastectomy was not my original choice at diagnosis years ago. I had opted for a lumpectomy plus radiation rather than a mastectomy. Until faced with the choice of whether to remove my breasts, I had never realized how important they were to me. I wanted to keep them. My doctors would monitor me closely, and there would be ample routine follow-ups.


But my follow-ups were anything but routine.

My doctors and I had not anticipated the many false alarms during the years following my treatment. We also could not anticipate that, in my case, mammograms and other diagnostic tests would prove inconclusive – thanks to my dense breast tissue. After all, a mammogram had missed my tumor just months before diagnosis, and my self-exam helped me discover the malignancy. I had already slipped under the medical radar once. Given my breast cancer history, keeping my breasts was akin to playing Russian Roulette.

So now, after a year of recovery and physical therapy, I find myself back in my figure drawing class. Yet, from the time the model removed her robe, I feel awkward. I feel

like a fake

like a fraud

like a freak show

I was created in a plastic surgeon’s image of what a woman should look like. While cancer didn’t steal my life, it robbed me of my authentic breasts, replacing them with doctor-created substitutes. To my plastic surgeon, my breasts are art – his artificial creations made to look like the real thing. And I'm his living sculpture. Before surgery, he drew marker lines all over my torso. I admired his wonderful sense of line at the time.

Now those lines are forever etched into my flesh.


I realize, though, that, like my doctor, I’m an artist. And that struggling with a drawing is much more pleasant than struggling to stay alive. I breathe deeply, close my eyes.

"Hoping for Hope"

I made the right choice, I tell myself. I should be grateful, I tell myself. But today is not the day for gratitude. Today is the day for a pity party.

Break time. My fellow students walk out quickly, hoping to catch a snack, smoke, or bathroom pitstop. I'm having a panic attack and having trouble breathing. I quickly snatch my pencils, pad, and gather my other supplies and make a beeline for the exit. 

My instructor stops me and asks why I'm leaving. I tearfully tell her that she's a great teacher, but I'm having body-image issues. She understands.


As soon as I arrive home, I run to the dresser mirror, I slowly peel off all my clothing, so delicately as if I’m made of glass. No one would ever want to sketch me, I think.

I crawl into bed and cry myself to sleep.

Do you have body-image issues as a result of breast surgery?

How did/do you feel physically and/or emotionally after surgery?


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.

My Three Words

During the most recent #BCSM tweetchat, each participant chose three words that would guide him or her for 2012. This excellent idea came from Philippa at Feisty Blue Gecko, who has been doing this exercise for each new year since 2009.  My fellow bloggers have followed suit, and now so am I. My words for 2012 are:


Courage
Perseverance
Peace


I am discussing these words together because, in my mind, they are intertwined. As I enter into a new year of new doctor appointments, I hope and pray for peace of mind. I plan to better to quell some of my health-related fears and pains that plague me day and night.


Last year found me celebrating my fifth year post DIEP-flap surgery. As those who read my blog know, the surgery has left me with abdominal and back pain. I hope for the courage to better cope with the pain -- and I found great bath salts (chamomile, eucalyptus, and rosehips) that temporarily keep the pain at bay.

Placebo effect?


Perhaps.

But then, again, who cares?

I'm in less pain when I soak in the tub and for a few days afterward. I hope to keep up the momentum when it comes to self-care. I must continue power walking, swimming, getting enough sleep, and eating right. Self-care leads to a sense of inner peace. And inner peace helps fuel my courage and perseverance.

I'm ringing in the new year with my tried-and-true doctors, as well as new physicians. Not looking forward to my first colonoscopy. I'm going to tap into my courage bank and get the rather unpleasant procedure, knowing full well that that a new C club to join could be lurking. But I must stare this fear in the face -- and act in spite of my fear.


Through perseverance, I was able to obtain a new primary care physician, whom I am seeing for a "routine" exam tomorrow. After a breast cancer diagnosis years ago, nothing really is routine anymore for me. I'm still aggravated that my hospital terminated its contract with my former primary care physician, but I am moving on and picked up my medical records, which was a fiasco to be discussed in a future post.

Overall, I am trying to embrace this new year of doctors' exams with a new daunting challenge: Scheduled around the exams, I will be treasuring time with my daughter, as well as oil painting, exercising, writing, reading, and keeping busy. I want to prove to myself that I can endure the doctor gauntlet without breaking down. That I can continue coping with life's hurdles. 


That I can still find peace and be centered.

Seeing doctors is a crucible of gigantic proportions. I am already tense at the thought of seeing my new primary physician and rehashing all the years of physical and mental hell.

But I know that when I am courageous and persevere, I tend to achieve peace.

To further give me peace, I will also be integrating Tai Chi into my exercise routine this year. When I was in China, I saw people of all ages participating in this activity in public parks everywhere. It looked, well, peaceful and relaxing. 


I achieved a great sense of peace -- and pride -- when I finished my manuscript for my book last year. This year, I will be searching for an agent and publisher. I know this is a long, arduous road and publication may not come to fruition this year.


But I dream hard and work hard. 


And that will serve me well in this endeavor. 

Finally, I feel a great sense of peace being part of an awesome blogging community. I enjoy reading postings from the best, most insightful writers in the blogosphere. Most importantly, I feel a kinship with these individuals I have met virtually and consider friends. Affected by breast cancer, we became a support community. I am lucky to have crossed paths with each one of them.


I am looking forward to a new year of awesome blogs from these remarkable people and am eagerly anticipating a new year of blogging.


Happy 2012!!


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 Price of Silence

"I have come to believe over and over again that what is most important to me must be spoken, made verbal and shared, even at the risk of having it bruised or misunderstood...the transformation of silence into language and action is an act of self-revelation... [M]y daughter...said '....you're never really a whole person if you remain silent.'"

-- Audre Lorde

I am finally reading Audre Lorde's The Cancer Journals. I've had it on my bookshelf for awhile, but I wasn't emotionally ready to read it -- until now. This excellent, insightful collection of writings stirred feelings in me I had long forgotten -- feelings about being silent when facing breast cancer.

As is the case for many people, diagnosis for me was a lonely time. Some close family members, who grew up in the if-you-have-a-disease-don't-talk-about-it era, had difficulty with my diagnosis. In their own way, they loved me and wanted the best for me. They meant well. But in meaning well, they made diagnosis and living with breast cancer and its horrific treatments even more sad for me.

Because they told me to be silent about my disease and treatments. 

Upon my diagnosis, my one close relative  told me, "Don't tell anyone about it" ("It" being breast cancer.) When I asked her why, she said, "Nobody needs to know."

So I did the only thing I could do.

 I told everyone. 

And I mean everyone, from the gentlemen delivering my couch (they said a prayer for me)  to gas station workers to my relatives to my friends to my co-workers  to complete strangers to the walls. I wasn't fishing for sympathy. Instead I was fighting to stay alive -- and fighting against silence.


I was fishing to lend voice to my experience. I was fishing for power in a crappy medical situation where I didn't have power.

You see, silence doesn't sit well with me.


To be silent about breast cancer is to feel shame for a disease that is no fault of our own. To be silent is to disempower ourselves.

I blog for too many reasons to list here, but one of the reasons is to share my story, my truths -- and ward off the demon of silence. Being quiet about breast cancer, or any disease/condition for that matter, is harmful to the psyche. But there is something about breast cancer in particular that  encourages societal silence, which includes denial and blame, and this is designed to negate our feelings. 

Here are just some ways people and society attempted to silence me -- and, when it comes down to it, how society attempts to silence others throughout  breast cancer diagnosis and treatments, all harmful to our collective psyche. These are not listed in a particular order of importance:

1. My parents wanted to hear that I was feeling good during my treatments. So I gave them what they needed to hear and told them during each phone conversation how great life was and how great I was feeling. 

2. I can't count the number of people who told me that I got the "good" cancer and was lucky.

3. So many people told me to "think positively." I once again felt marginalized and silenced.

4. Even when I complained about feeling horribly ill, people told me I looked good, thus denying  my illness and harsh treatments. In fact, one person asked me how I felt, and I told her that I felt terrible. She then said, "Well, you look good, and that's what counts." WTF?

5. I was scolded by various people for being too negative about my disease.

6. Whenever people find out I'm a cancer "survivor," they say things like, "Good for you!" -- as if I had anything to do with living past this hell thus far.

7. Pinkwashing. Enough said.

8. People didn't want to hear about my fears or horrible experiences.

9. Others called me brave, courageous, strong, and heroic. Yeah, right.

10. I was told how lucky I was to get a boob job and tummy tuck when I was really going through a DIEP procedure. Here's news for all those knuckleheads who envied me: I'd gladly trade places with you.

My fellow  bloggers, all extraordinary, are lending voice to breast cancer. If these individuals whom I respect and admire hadn't had the courage to blog and tell their truths, the beast known as silence might win.

And we in the blogging community can never let that happen. The price of silence is too expensive.

Did you or someone you know ever feel silenced about a disease/condition? If so, how did you and/or that person handle it?

Please feel free to share your story. The more stories, the more power we have over silence.

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.

Going Off the DIEP End

Five years ago today, I had to get something off my chest.

It was my breasts.

I had a prophylactic double mastectomy with reconstruction (DIEP) December 1, 2006, a day I will know for the rest of my life. 

That day, I was made into a bionic woman of sorts. Abdominal arteries, muscle, and fat were tunneled up to create new man-made breasts, and my circulatory system was "rewired" so blood would flow in them. The nipples would be created and tatooed a few months later.

A lot of women envied me that day for getting "a boob job and a tummy tuck."

Now before I tell the truth about my experience with the DIEP and seem like an ingrate, here's a disclaimer: I wanted and needed the surgery, the DIEP was the best option for me, and if I had to do it all over again, I would have. (Well, except for the ICU part, which was so hellish, the devil has PTSD from the experience.) Nevertheless, here's an open letter to my surgeons, who touted this surgery as the best thing since sliced Beth bread:

Dear Doctors:

First of all, I want to thank you for your excellent work. Your dedication and caring have meant the world to me, and I will always be grateful to you.

However, I want to let you know about who I was before surgery and who I am now.

Before surgery, I was quite athletic and fit, although a three-time yoga class dropout due to my general clumsiness. I enjoyed running, swimming, and weight training. Other than that little breast cancer "incident," I was in excellent health. Before breast cancer, I liked my body. I wasn't vain; I just was glad to have what I was born with.

Cancer would forever change that.

After chemotherapy, radiation, and three lumpectomies, I wasn't so happy about what I was born with. Because what I was born with was deformed. Because what I was born with tried to kill me.

Add to that the loss of a great friend to breast cancer, a scare from the results of one of my MRIs, and general upheaval -- and you can see why I opted for a DIEP flap. I couldn't bear to wake up after surgery without breasts. I just wanted it all over in one fell swoop.

We all chose a surgery that would remove the deadly duo and give me breasts immediately. You all felt the surgery was a smashing success, and technically and medically speaking, it was. But as a human being first and foremost, not just a medical case, I see the success but also the drawbacks to the DIEP. The following is an account of my experience; I can speak for no one else but me:

Hospital Recovery

Once I was out of ICU and thus out of danger's way, my post-surgical self could stumble about my hospital room and look around. But I made a mistake.

I looked in the mirror.

My torso was sliced up, and the bloodied stiches looked like railroad tracks running all over my flesh. It was ugly, much like cancer, come to think of it. But the scars would heal.

Still Recovering

Five years after the multicolored bruising has disappeared, I am still recovering.

Now, five years later, I want to know why you assured me that the DIEP was perfect for someone with an active, athletically fit lifestyle.

Why didn't you tell me that I would suffer nearly crippling pain regularly from my compromised abdominal wall?

Why didn't you tell me that I would re-injure my torso almost every time I pick up my daughter?

Could you have predicted that now, five years later, I still cry some nights because I hurt so badly?

And do you know that the pain is especially tormenting because it is a constant throbbing reminder of breast cancer?

Where in our pre-surgery conversation was the term "chronic, life-long pain" ever mentioned? Was it lost among the beautiful before-and-after photos that kept me so optimistic?

I grieve that I can no longer run. I am thankful, though, that I can walk and swim.

I don't like myself when I'm in pain. I'm crabby, grouchy, depressed, and, well, crabby. I am trying my best to cope with relaxation techniques and to keep up the exercise. And then I feel guilty because I know that so many people have worse situations than me. I know how lucky I really am.

Mostly, I am still grateful to all of you. Because this surgery has given me a chance to see my daughter grow up. Notice I said "a chance." I know that there is no guarantee that I will live a long, healthy life.  (OK, I want a guarantee I will live a long, healthy life.)  But you and medical science have done the best for me.

I will live with and accept the pain and carry on.

Sincerely,

Beth

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.

Reclaiming October

As is true for many affected by breast cancer, October has been especially rough on me.

How have I dealt with all of the pink hoopla invading this month?

Not very well, I'm afraid. But that is about to change.

For the first half of this month, I put myself into a self-imposed "house arrest," avoiding stores and having groceries delivered to me instead -- all because of that dreaded pink ribbon.

I couldn't bear seeing all the pink balloons, pink ribbons on various food items, and pink whatevers of any kind. My exile involved becoming hermitlike, avoiding TV. I couldn't handle seeing any more smiling people on breast cancer commercials, and I couldn't watch the news. I even couldn't keep up with the many wonderful blogs out there.

Right now, ignorance is  bliss to me. I have felt so inundated with pink, that it seems like someone vomited Pepto Bismol all over the world.

But then, something remarkable happened. I fell in love with October all over again. My "exile" and daily power walks helped me see the forest for the trees.

The trees' change of color and the sweet crunch of the leaves under my feet all overtook me. And I realized that, in the natural order of things, October is a beautiful month. In the natural order of things, October is not meant to be dressed in pink.

So I have decided that for the rest of this month, I need to take a break from blogging and focus on enjoying life. I need to focus on spending time with my wonderful daughter, going to fall festivals, and appreciating all the autumn colors and  beauty that make up October.

I am also spending the rest of this month working on my book proposal.

So, for now,, I am taking a break from the blogosphere. I hope my readers understand, but it's important I do this now. I will be back in November, but right now I am admiring the beauty of this month:

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.