A Kinder, Gentler Reconstruction

Posted on: October 17th, 2014 by


Reconstruction has saved me.

I’m not referring to my prophylactic bilateral mastectomy with reconstruction. I’m talking about the transformation of my hospital’s Cancer Care Center, where I received my treatments and followups, to the now-named Center for Advanced Care, where I receive followup care.

Years ago, I first met my oncologist in the Cancer Care Center, a very ordinary, depressing sort of building with few windows. Thus the interior was somewhat dark and ugly — like cancer and my resulting depression. Luckily, the building’s dimness couldn’t eclipse my doctors’ and nurses’ bright smiles, hugs, encouragement, and their communication with each other in order to save and extend their patients’ lives.

Still, it was a darker space during the darkest place in my life.

When I’d get my post-treatment followups at the Cancer Care Center, Post Traumatic Stress Disorder (PTSD) would overtake me. Everything would trigger flashbacks. I’d pass by the bathroom I threw up in, the nook I sat in and cried, the examination rooms where I had breakdowns. I associated all areas with sickness and death. Even the bathroom soap’s scent made me ill, for I smelled it on my hands during chemotherapy. To this day, I cannot tolerate the scent, which triggers those horrible flashbacks.

Imagine a Vietnam veteran who, after the war, is placed on the same battlefield where he witnessed death and destruction. And he is told to just calmly walk through the area. That’s the best way I can describe how it felt for me to be at the Cancer Care Center year after year. I barely coped.

Then a kind miracle: the building came down, wing by wing.

I remember the pardon-our-appearance signs, as well as entering the building in some weird insulated construction tunnel amid concrete structures. My oncologist apologized to me for the noisy mess, which made the building look even more dismal. I still was having flashbacks because the layout was the same for the most part, and the change was gradual.

But seemingly overnight, the center’s transformation was complete. It was magical, like when the fairy godmother turned Cinderella’s rags into a beautiful gown.

What’s In a Name?

The now-named Center for Advanced Care better reflects the hospital’s integrative-team approach for patients, as so many hospitals have. The first time I walked in, I was shocked how beautiful the space was. The entire building was reconstructed to create an open, light, airy feel, with glass walls that let in lots of natural light. Beautiful artwork adorns the walls, and the space is inviting. The first followup in that building left me blinking several times in disbelief and wonder.


Waiting Room

This new center provides the same excellent care to patients. But I have no illusions that this new center will save more lives or provide care superior to that of its predecessor. And I still have panic attacks in my oncologist’s examining room, as well as scanxiety. But gone are those awful flashbacks when I see doctors in this building.

It turns out that the act of tearing down has built me up emotionally.

Do you have flashbacks or panic attacks in doctors’ offices/hospitals?

Have you witnessed physical changes to your hospital/doctor’s office?

I’d love for you to share your experience(s).

Be a Good Girl and Shut Up

Posted on: October 10th, 2014 by

The idea for this post came from an angry comment I recently received on a post I wrote back in March. That post, called Kohl’s: Cash Rich, Ethics Poor, called out the merchandiser for stealing METAvivor’s The Elephant in the Pink Room campaign just to feed Kohl’s cash cow. I told the cashier I was a cancer survivor, and rather than giving her an eagerly awaited feel-good story of survival and triumph, I told her that a number of people I knew died of the disease. Later, I nicely returned the merchandise and cut up my Kohl’s credit card at home, in fact, while I was writing the post.

This is what the perturbed reader wrote; I boldfaced the words especially significant for this post:

“You realize that by cutting up your Kohl’s card, it actually does nothing, right? You still have a bill to pay. And you still have an account with Kohl’s, until you physically pick up the phone and call them to cancel the account. Secondly, while I understand what you’re trying to say, do you realize how often cashiers are bullied like you bullied that cashier? He/she did not know you had cancer, nor did she know you were bitter about it. Raising money to fight such a terrible disease is amazing. Whether or not Kohl’s did it to your standards, doesn’t matter because they raised money. Kohl’s isn’t all about profit to better themselves, they are constantly giving away money to different places/things because they care. Shame on you for making that cashier feel like an idiot because you couldn’t focus on the positive and you had to be negative about it. As someone who has lost many family members to cancer, I hope places like Kohl’s does raise enough money to make a difference and people like you don’t ruin it.”

Looks like I ruffled some feathers.

Oh well. Why have feathers if they can’t be ruffled?


I’m sorry this reader lost family members to cancer. This is truly heartbreaking.

But that is not the issue I have with the above comment. What I take issue with is that it suggests I be a good girl and shut up. The commenter expects me, as a cancer survivor, to be positive and upbeat about my surviving breast cancer thus far. Her message is that if I am not grateful to those raising money in the name of breast cancer and if I’m not positive about this devastating disease, I should be ashamed of myself.

In fact, my surviving breast cancer has been bitter and sweet. I am grateful for the sweet gifts of life: a child to love; a career that provides satisfaction; supportive friends, family, and an awesome online community; and a life filled with love and happiness. I am very lucky and blessed to have the life I lead.

Life has been generous to me, and I’m grateful.

But, truth be told, I am bitter about having had cancer. How can I not be? I’m NOT grateful for all the suffering I endured because of this disease: the terror, the multiple disfiguring surgeries, being poisoned, burned, body image issues, bone density problems, lasting psychological trauma associated with survivorship, and so on. I’m angry that cancer came knocking on my door and wreaked havoc with my body, mind, and spirit.

And I’m bitter that metastatic breast cancer exists and that there is no cure — though some merchandisers and marketers would have the general public thinking there is one. I’ve also lost loved ones to metastatic breast cancer.

I’m not a bitter person, but ooooh am I bitter. I’m actually a positive person, but I won’t ever feel positive about this disease. If that makes me seem like an ingrate, then so be it. My feelings are my own, and I won’t be shamed for letting my voice be heard.

I won’t be a good girl and shut up.

photo 4

photo 2

Have you ever been told to keep your opinion about breast cancer to yourself?

Have you ever had readers respond to your posts angrily?

Embracing Humanness

Posted on: October 1st, 2014 by

Wishing everyone a sweet year ahead is a beautiful concept — whether it’s New Year’s in January or during Rosh Hashanah, which just recently passed.

Last year, my goal on Rosh Hashanah was to cast away what I thought was the biggest sin of all — mistreating myself. My goal last year was to purge myself of the fears that came with doctor appointments and medical concerns.

But in creating these goals, I made a misstep. I went to doctor appointments expecting to have conquered all my fears. I was resolved not to show doctors my human side. In the end, at a recent oncology appointment, I couldn’t attain an unreachable goal: showing my game face. And even worse than that, I beat myself up after the appointment for being human in front of my doctor.

I mistreated myself for not being a better person. And then I berated myself for mistreating myself.

My goal over next year is simple, but not easy: to accept and, dare I say it, embrace my humanness. So this year, I’m on a different path, stepping back so I can step forward.


Goodbye Pinktember, Hello Pinktober

Posted on: September 26th, 2014 by

It used to be oh-so-simple, when Breast Cancer Awareness Month was limited to October. I remember the good ‘ole days, the days when our disease was exploited only one month a year. Now, like a cancer, it is spreading beyond October into other perfectly good months. Like September. Like August. Dare I say, even July?

Actually, here in the US, Breast Cancer Awareness Season officially kicks off in spring, just in time for Mother’s Day. That’s a half year of breast cancer awareness nonsense — just to market products and line the pockets of greedy corporations without a conscience. I mean, really, if I buy yogurt or a loaf of bread with pink ribbons on them, am I really contributing toward a cure for this horrible disease? I don’t think so.

Everyone is aware of breast cancer ad nauseum. But very few people are actually educated about breast cancer.

Awareness is not education.

So many people are unaware of the facts. Just to state a few:

*Thirty percent of breast cancer patients will go on to develop metastatic disease, which is what kills, yet only 2 percent of funding goes toward Stage IV research. Pathetic.

*Early detection does not always save lives. Breast cancer biology is such that, even tumors found early, whatever that means, can and do metastasize.

*Men get breast cancer.

*We need better routine screening tools than just mammograms. A mammogram missed my cancer, for example. However, I do applaud those who are trying to get mammograms into uninsured and underserved communities. I still think a mammogram is better than no screening tool at all.

And now onto my pet peeve — describing breast cancer as a battle. I’ve said it before, and I’ll say it again, battle language to describe breast cancer (or any cancer for that matter) is wrong, wrong, wrong.

A battle has winners and losers, right? Guess who the winners are? Those who live. Guess who the losers are? The ones who didn’t make it.

This battle metaphor diminishes what all people with breast cancer go through. It is NOT the patient’s fault if his or her breast cancer metastasizes. People fight equally hard to live, whatever the outcome.

A survivor is no more brave or victorious than one who has not survived the disease.

Cau$e Marketing

I often receive unsolicited e-mails asking me to promote some pink product or to inform my readers to be aware of breast cancer. Um….many of my readers are too painfully aware of breast cancer. See, dear solicitors, they are breast cancer patients and survivors or those who lost loved ones to the disease. Some used to read my blog until they died of breast cancer.

Apparently, unwanted solicitors don’t read my blog, where I discuss how devastating breast cancer diagnosis and treatment are. Lucky to have survived thus far, I’m unlucky enough to face the harsh emotional and physical aftermath of cancer and to witness so many people dying of this dreadful disease.

Corporations are accountable how they are informing the public about breast cancer.

If any cause-marketing solicitors are reading this post right now, which I highly doubt, and they really want to be educated about what breast cancer is like, which I highly doubt, there are many, many bloggers — female and male — who lend an authentic perspective of the breast cancer experience.

Organizations such as The Keep A Breast Foundation are doing us a major disservice by its name, fear-mongering “information,” and products. Besides offering a bracelet with the slogan “I (heart) Boobies,” the organization sells school bags in its Keep A Breast collection with the same message. Nothing says breast education to children and tweens like an “I (heart) Boobies” backpack and bracelet. And because the site is progressive enough to include the fact that men get breast cancer, the organization sells men’s polos with — you got it — the I (heart) Boobies logo on it.

But it’s not just the I (heart) Boobies campaign. There are so many similar campaigns, such as Save the Ta-Tas Foundation, I cannot even keep track of them all. I’m inundated by materials from so many corporations, I’m in a pink-haze daze.


And, by the way, breast cancer is not a pretty, sexy, and fun disease. Unwanted solicitors should check out my posts on body image, survivorship, and my bilateral mastectomy and reconstruction. Nothing sexy and fun about it. Nothing sexy and fun about all the scars, suffering, illness, chemobrain, bone-density loss, extreme pain, lymphedema, and emotional anguish, and invisible scars just to name a few.

Truth is, cancer is ugly.

Sorry to sound ungrateful, but I don’t feel like partying it up half the year just because I’ve survived the disease thus far. My heart breaks for those who die and their loved ones. My heart breaks because there is no cure. My heart breaks because no disease is so sexualized and exploited — and therefore trivialized — as breast cancer.

The one thing I and everyone can do is donate to and support Metavivor, which advocates for research for Stage IV breast cancer. I’m going to take on a challenge posed by Ann Marie Giannino-Otis of Stupid Dumb Breast Cancer: to give up items we can do without to donate to Metavivor instead. I’m on a tight budget, but I’ve found that I can give up an occasional Starbucks visit to donate to Metavivor.

If you would like to take part in the #giveitup challenge, click here.

In the meantime, I think I’ll try to enjoy October — until the next solicitor contacts me, that is.

Any comments or feedback is appreciated.

Game Face Has Cracked

Posted on: September 22nd, 2014 by

Last week, I had a moment at my oncologist’s office.

Well, several moments, actually, where my game face cracked, and my panic revealed its ugly self to Dr. B and his staff.

I went to the appointment with confidence I could pull it off, you know, the game face. As planned, I brought my toolbox and strategies to help me relax: a stress ball, music, something to read, something to draw, and deep breathing exercises.

I was all prepared, confident I could pull off the confidence game. After all, I’ve been NED for quite some time now. I reasoned that I should be “over it” by now, given the clean bills of health my oncologist has given me over the years. Besides, I feel so comfortable with my doctor, I sometimes feel we are friends.

The nurse took my blood pressure, and that’s when my plan for serenity went awry. I felt just a little nervous, but my blood pressure revealed otherwise. It skyrocketed, so much so that the alarmed nurse said, “Your blood pressure shouldn’t stay that way. This is a real problem.” I admitted to her, just as I told the social worker last year, that my being here was anxiety-provoking for me.

In that moment, my fragility revealed itself. The facade of relaxation, the facade of good spirits, the facade of my game face faded away. And there I was, waiting in the examination room with my mind racing about a possible new medical problem — high blood pressure. And I became even more nervous and agitated about my oncology appointment.

It was one of those I-want-to-call-911 and run away moments.

Enter my oncologist, and with a dramatic gesture, he grabbed the blood pressure cuff and said, “So, your blood pressure is high? Let’s see.” As he took my blood pressure I tried hard to relax. “Much better, much better,” he said soothingly, as he revealed it was now within the normal range.

“I have anxiety coming here,” I shamefully admitted as he examined me. “It’s OK, you’re OK, you’re OK,” he tried to reassure me. We chit-chatted a bit, and he encouraged me to continue searching for agents to get my book out. He asked about my teaching and my daughter. Over the years, he has gotten to know me well.

Through my shaking hands, I showed him pictures of Ari and gave him a hug for helping to save my life and realize my dream of motherhood. He reassured me, “You are just fine. And you’re a great mother, a great mother.” Then the appointment was over.

Appointment Aftermath

For days after the appointment, I was embarrassed and couldn’t calm down — even though the exam went well. After some soul-searching, I realized why I was so upset.

In the world of oncology, I am a success story thus far. And I feel pressured to act the part.

I hate being vulnerable, so I aim to be stoic at doctor appointments.

And I aim to please: I know that oncologists witness so much suffering that I feel obligated to cheer mine up, to show him a success story.

And part of my happy-at-the-doctor’s facade is because of hubris. Damn pride. I don’t want to admit there are any chinks in my armor.

My game face is nothing but a sham to cover up the fact that I’m human. And I’m a bad con artist, unsuccessfully trying to trick medical professionals into thinking I’m calm and confident and, dare I say it, relatively happy.

smiley face

I must purge myself of the deeply ingrained illusion that showing emotions makes me weak. Easier said than done. But I’m beginning to realize, perhaps for the first time, that this kind of pride can be destructive. And that perhaps showing emotions and being strong are not mutually exclusive.

Over the years, putting overly high expectations of myself has plagued me.

Covering up my emotions isn’t working for me anymore.

After all, if emotions must be revealed, where better than in an oncologist’s office, a place rife with emotions — day in and day out?

And writing this post has reminded me how hard I am on myself. I beat myself up when things don’t go perfectly at the doctor’s, in my opinion, whatever “perfect” looks like.

My goal this year is to be easier on myself. There is no better time to start than now.

How do you fare at doctor’s appointments?

What relaxation tools do you use, if necessary?

Remembering 9/11

Posted on: September 11th, 2014 by

Like so many, I remember 9/11 as if it were yesterday.

I often wonder about the families and friends who lost loved ones — how have they rebuilt their lives? Or did they rebuild their lives?

Ask anyone, and I’ll bet he or she will tell you where he/she was on September 11, a day of collective suffering — not just for those of us in the United States, but for our friends around the globe as well.

For me, 2001 is a year I’d like to forget. I was diagnosed with breast cancer in January 2001. My world understandably fell apart. On September 11, 2001, my world would fall apart again.

I had that day off work so I could see my surgeon for a followup.

The year had been exceedingly tough, and I didn’t think it could get any tougher.

But as I was getting dressed, my then-husband told me a plane had hit one of the World Trade Center towers. We stayed riveted to the television, watching the tragedy. I started sobbing; 2001 would forever be etched in my mind. And though my cancer diagnosis and treatment were my world at the time, the world — not just my world — was horrifically altered.

On the day of the tragedy, I panicked: my brother was working near the Empire State Building at the time, and I was afraid this landmark might be next. I tried calling him, but it was impossible to get in touch. My aunt lives in Manhattan, not too far away from where the towers once stood. All I could do was watch helplessly, as everyone was advised that calling loved ones was impossible. I knew my brother and aunt were in Manhattan somewhere, and I felt powerless to help them.

I also worried about friends in Washington D.C.

It was a very long day.

(Late that evening, I found out through my exasperated family members they were alright.)

I wasn’t sure if my appointment with my surgeon on 9/11 was canceled. It was not. My eyes remained fixed on the waiting room television until my name was called. The surgeon greeted me with, “What a crazy day, huh?” I told him about my concern for my family members and friends.

Breast cancer had taken a backseat to the tragedy unfolding in my country.

At that time, Americans felt immune to such an unthinkable assault. We were a carefree bunch, but this attack on American soil reminded us that no one is immune from terrorist attacks.

My innocence was lost with a diagnosis of cancer in January; in September, our country’s innocence followed suit.

A year before the tragedy, my brother and I took a picture with the towers in the background. We were raised in New York, and though I now lived in Chicago, I had strong ties to New York and visited family as often as I could.

I had cancer at the time the picture was taken, but I didn’t know it. And before 9/11 most of the world at large could not predict the tragedy about to unfold in the United States.

But now, thirteen years later, lives have been recalibrated.

I see my oncologist today, on September 11. As if on cue, my anxiety is heightening. But today I must remember, it’s not just about me, but all those innocent lives touched by a horrendous event.


Where were you on September 11, 2001?

Feel free to share your memories of that day.

School Number 2, Now Number 1

Posted on: August 27th, 2014 by

She didn’t cry when I kissed her goodbye.
But later I wept.

On Monday, Ari officially became a first grader at a school unfamiliar to us both.

All day I stared at the phone in dread, wondering when I would get the phone call, you know, the your-kid-is-hysterical-please-come-to-the-school one.

Thankfully, the phone didn’t ring.

After a deluge of tears, I spent the rest of the day in full suspense, wondering how my daughter was faring. Was she confused about school procedures? Was her teacher, whom I met for a nanosecond, still nice? Was Ari making friends? Was she fitting in? Did she lose her lunch money?

And, of course, the overarching questions: What was she learning each moment of the day? And was she being pushed to accomplish too much?

As you, my readers, know, Ari’s kindergarten experience at a private school last year was stressful, and learning was not fun for her. She had a kind teacher, but not a kind amount of homework and enormous pressure to succeed. I initially chose the school because I felt she would get a top-notch education there. I was impressed with the institution during a walk-through, a mini-orientation that failed to mention the amount of pressure the school put on its students.

Still, I made the decision to send her to this school, reassuring myself with the mantra throughout the tumultuous school year: “Ari has phenomenal educational opportunities here.” And she did.

And in reassuring myself about Ari’s high-caliber education, I lost sight of what defines a quality education.

Steroid School gave a huge dose of education but did not instill in Ari a passion for learning. Instead, schoolwork became a chore to be tolerated. Her eyes became dull with oppression rather than lit up with excitement.

So we made a school-switch to the local public school only a half block away from where we live.

The night before her first day at this new school, she was understandably nervous. But she admitted that, with Steroid School, she felt “pushed too much.” And I learned a powerful lesson during this conversation: that kids have a better handle on their progress than adults perhaps give them credit for.

When I met Ari after school, her eyes were lit with a passion for learning. She couldn’t stop talking about how fun school was and begged me to allow her to go to second grade there! She was happy, made a friend, and was excited about this experience. Later that night, I wept with relief and happiness.

I am an educator by profession, but from time to time I needed to be reminded that when learning is fun, students are more likely to connect to their education. And I will always enjoy my child’s excited eyes.

The new classroom

The new classroom

Ari's hook

Ari’s hook

Please feel free to share stories of your childhood educational experiences.

I also would enjoy hearing about your or others’ kids’ educational experiences.

How Cancer Changed My Faith

Posted on: August 14th, 2014 by

Trauma tests us in so many ways — physically and emotionally and spiritually. People react differently to trauma, which tests our courage and our faith, religious or otherwise. During last week’s #BCSM tweetchat, we discussed the topic of faith and cancer. Despite differences in beliefs, which ran the gamut from atheism to religious, it was a respectful, enlightening discussion.

It is said that one should never discuss religion publicly. Too many heated debates. But I’m going to discuss cancer and my faith publicly in this post.

Here’s my disclaimer: I’m not trying to proselytize anyone, nor am I looking for a heated fight or total agreement with my point of view. My beliefs are just that — my beliefs. I’m just adding to the discussion, and I certainly respect others’ beliefs.


I do believe in a higher power, although I’ve had periods of agnosticism during my life. I was brought up in a religion that, like many religions, is rich with ritual. Many of the rituals are beautiful and meaningful. To me, some of them are not. For years, I searched for comfort in my religion, but I found no comfort. Instead, I felt increasingly constrained, almost suffocated, by the trappings of organized religion. And I felt alienated by the “score keepers,” worshippers who kept score and judged me because I could never measure up to their religious standards.

Still, I longed for a belief system that would best serve me.

Then came cancer, and I found my answer.

It wasn’t that simple, of course. When I was diagnosed with breast cancer, I was crushed. Devastated. Terrified. Panicked. Depressed. And so on.

I was convinced I was going to die. And in an unhealthy marriage with a husband who no longer cared about me, I knew I would die alone.

Not always able to confide in my then-husband, I sat in our red Chevy regularly and cried alone. I did a lot of praying during this time, but oddly, I never prayed for my life to be spared. I don’t know why I didn’t pray for that.

I prayed without knowing what I was praying for.

And it was in that car, during my greatest feelings of aloneness and abandonment, that I felt this power well up within me. And that’s when I realized I would never be alone. That come what may — live or die — God would hold me in His arms and be there for me. God would not abandon me.

And, for the first time since diagnosis, I felt some solace.

I was still terribly afraid, but believing I would die in God’s arms gave me clarity and helped me come to terms with the diagnosis and treatment.

I do want to make one thing clear: I did not believe nor do not believe that God gave me cancer for a higher purpose, to test me, or to make me a better person.

Some things do happen for a reason, but cancer is not one of them.

I am no better of a person now than I was during diagnosis and treatment. Much different, yes. But no better.

Well-meaning people have told me “God doesn’t give you more than you can handle.” I do not believe this. God didn’t give me cancer, the universe didn’t give me cancer to send me some profound message. There was no purpose to my having cancer.

Cancer just happens.

And often it was more than I could handle, as evidenced by my public breakdowns during diagnosis and treatment.

No, there was no higher purpose to my having cancer. But there was purpose to my suffering. I suffered so I could hopefully live, I suffered so I could have a child one day, I suffered to spare my family from enduring a heart-wrenching loss. As Viktor Frankl says in his wonderfully insightful book Man’s Search for Meaning, “Man’s search for meaning is the primary motivation in his life….”

His book’s overarching premise is that one can endure suffering — whatever the outcomes — if one can find meaning in that suffering.

And he’s right.

A Different Kind of Faith

Having cancer gave me another kind of faith — in myself. I learned how to speak up for myself in medical situations, giving me some control in a situation that was out of my control.

I realized that I was my own best advocate, and I learned to navigate the crazy maze that is the healthcare system. I learned not to put up with doctors who were bullies, as well as to choose excellent physicians.

My faith in my wonderful medical team deepened as my treatment continued, and my faith in my oncology nurse became stronger each treatment day. Ann was wonderful, and I will devote a future post to her, as oncology nurses are true champions.

My marriage ending caused me much contemplation, and I realized I had someone I could rely on — me. Living alone for the first time in my life, I realized I was more self-sufficient than I had ever known.

I was lonely at times, but never alone.

Despite the numerous emotional scars — not to mention the physical scars — my faith in a higher power and myself remain intact.

Today I do not affiliate myself closely with any religion, but as many people are, I am deeply spiritual. I am not at peace with cancer and its aftermath, but I am at peace with my faith.

bamboo and sun

At least for now…

Has cancer or any illness for that matter changed your faith? If so, how? If not, why not?

There are many types of faith besides religious/spiritual faith. What kind(s) of faith did you have following cancer diagnosis and treatment or any other illness?

Defending Mastectomy Choice

Posted on: August 4th, 2014 by

Mastectomy is always in the news, it seems, and recent research focuses on women diagnosed with early stage breast cancer who opted to remove the affected breast as well as the supposedly healthy breast. The procedure is called contralateral prophylactic mastectomy, or CPM.

Peggy Orenstein addresses CPM in her widely read July 26 The New York Times Op-Ed piece titled “The Wrong Approach to Breast Cancer.” Orenstein says, “Researchers I’ve spoken with have called the spike [in CPM] an ‘epidemic’ and ‘alarming,’ driven by patients’ overestimation of their actual chances of contracting a second cancer.” She adds, “Well, first of all, it is extremely rare for a tumor on one side to spread to the other. Cancer doesn’t just leap from breast to breast. In any case, cancer confined to the breast is not deadly. The disease becomes lethal only if it metastasizes, spreading to the bones or other organs. Cutting off the healthy breast won’t prevent the original tumor from doing that.”

I have great respect for Orenstein, a two-time breast cancer survivor, and her Op-Ed piece is spot on — mostly. I do take issue with the title of the work because as we in Cancerland know, there’s no right way to do cancer, so how can there be a wrong approach? All we in Cancerland care about is saving our lives and making the best decisions we can with the Sword of Damocles hanging over our cluttered heads.

The road to prophylactic mastectomy is a difficult one, wrought with heavy decision-making. Most patients, I would think, do not just decide to lop off their breasts willy nilly. And I do not believe all women who opt for CPM are making the wrong decision. Unless one is faced with this devastating disease, he or she will never know how he/she will react.

I’m no medical expert, and all I can share is my point of view, and that is having a supposedly healthy breast removed should be the choice of the breast cancer patient.

Don’t get me wrong: I’m not promoting prophylactic mastectomy of any sort, but I do think it behooves us to listen to the patient and allow him or her to have the choice, if it’s a reasonable one. Those of us who hear the words “You have cancer,” are forever changed and want to save our lives. And, for some women, this means CPM.

Each woman’s or man’s breast cancer experience is like a fingerprint — unique to each person diagnosed. There are many complex factors to consider. My story, like everyone’s story, is unique. While I didn’t have CPM, I painstakingly decided to have a preventive mastectomy — on both supposedly healthy breasts — and years after my original breast cancer diagnosis to boot.

In 2001, I was diagnosed with cancer in my right breast. Understandably my world shattered. Forever.

I was a breast conservationist, as was my surgeon. He cited the studies that showed a lumpectomy with radiation was just as effective a treatment as a mastectomy in preventing a recurrence in the affected breast. Because I so desperately wanted to keep my breast, I opted for lumpectomy with radiation. When I told him my decision, he smiled. I knew he believed that saving my breast was the right choice.

And, at that time, it was.

However, lumpectomies can be overrated. In my case, the lumpectomy process was not so easy; after taking a sizable chunk out of my breast, the surgeon revealed that my margins were dirty, and he had to do a re-excision. This second lumpectomy caused an even greater deformity in my right breast. Although body-image issues began plaguing me, I decided to live with this deformed breast because, frankly, I didn’t want any more surgery.

I wanted peace.

Peace eluded me, however. The five years that followed were tumultuous — filled with scares and false alarms. My breasts were highly dense, and mammograms were not conclusive, so my oncologist ordered MRIs in addition to mammograms.

Russian Roulette

At the beginning of 2006, an MRI picked up an abnormality in the deformed breast. My staunch-breast-conservationist surgeon did yet another lumpectomy to remove the mass. Biopsy results revealed the mass was scar tissue from a previous lumpectomy. While I was relieved the results were benign, I was increasingly disconcerted and unhappy, living in constant fear of slipping through the cracks and getting an undetected recurrence in one or both of my breasts, thanks to my dense breast tissue.

Come to think of it, I was also upset by my now-mutilated breast.

Yet, if it weren’t for the breast density issue and the fear of a missed recurrence that gnawed at me, I still would have kept that breast. That’s how badly I did not want a mastectomy. But during the Scare of 2006, a radiologist told me, “Your breasts are so dense, it’s really hard to know what’s going on in there.”

I realized then, that, for me, keeping both breasts was akin to playing Russian Roulette.

After much deliberation, I told my surgeon I wanted a prophylactic bilateral mastectomy with reconstruction. He got all paternalistic on me and expressed that my decision was flawed. He refused to perform the mastectomy. While he was a surgeon noted for his excellence, I wondered how many lumpectomies on me were needed before he viewed the lumpectomy merry-go-round as mutilation.

I shopped around for surgeons who would buy into my choice.

I advocated for myself like I’d never advocated before. While some surgeons felt I had a screw loose, others said my decision was “medically sound.” My oncologist supported my decision completely, telling me, “If you don’t get this surgery, your life will be a series of continued scares, or you might have a recurrence that goes unnoticed.”

To me, this was no quality of life at all.

On December 1, 2006, I underwent a prophylactic bilateral mastectomy with DIEP flap reconstruction. Ironically, my mastectomy surgeon was a breast cancer survivor who had had a mastectomy years before. A doctor and a patient, she understood me. She knew that, in my case, a preventive bilateral mastectomy was a reasonable decision.

My recovery from the DIEP flap was difficult, despite my excellent reconstructive surgeons. But I knew about the difficult recovery, as well as the multitude of risks, before the surgery. I believe I made the best, most-informed choice I could have for my situation. I did not make this decision lightly. Despite my long recovery and the mind games that still plague me, I know I made the right decision — for me.

And, yes, I know that I can still have a recurrence in either or both breasts and that a prophylactic bilateral mastectomy is not a cancer panacea. But I opted for this procedure, hoping it could tilt the odds a bit more in my favor. Another patient in my circumstances might have opted to keep his or her breasts. And that’s fine.

Prophylactic mastectomy should be a choice for cancer patients.

Oh, and about the “healthy” left breast that was removed — the one that had never had cancer in it — it turns out it was filled with precancerous cells. “You would’ve probably had cancer again,” my oncologist told me. “Having you get this procedure was absolutely the right thing to do.”

Of course, if I still get a recurrence, I’m not so sure I would feel I did the right thing. I am human, after all. I made the best decisions I could under serious circumstances.

Breast cancer patients have a lot of decision-making to do, as so much is at stake.

Several medical professionals acknowledge the difficult decisions involved with prophylactic mastectomy. The Journal of the National Cancer Institute article titled “Marginal Life Expectancy Benefit From Contralateral Prophylactic Mastectomy” states later in the article, almost as an afterthought, “‘Survival is only one potential benefit of a cancer risk-reduction strategy; effects on cancer-related anxiety, cosmesis, and self-image are also important in decision-making processes.’”

Dr. Elaine Shattner in her article titled “It’s Not Just About Survival: Why Some Breast Cancer Patients Opt For Surgery on Both Sides,” acknowledges “But the decision [to opt for the preventive procedure] isn’t straightforward, as some might suggest. Survival isn’t the only issue. Rather, it’s about the quality of life after breast cancer surgery.”

And I hope my decision will give me the best possible quality of life. That’s all those of us in Cancerland really want, isn’t it?

A must-read post on this topic: Protecting Women’s Agency: On Prophylactic Surgery for Non-BRCA+ Patients


Where do you stand on the CPM issue?

Did you opt for a lumpectomy with radiation or mastectomy?

Feel free to share your opinions and your stories. I would love to hear them.

My Writing Process

Posted on: July 21st, 2014 by


I am pleased to participate in the blog tour that highlights each participating blogger’s writing process. I hope this post helps readers better understand mine. I was invited to this tour by the wonderful Jennifer Campisano of the excellent blog Booby and the Beast.

As part of this blog tour, I answered the following four questions about my writing process.

What am I currently working on?

I am working on many writing projects at once. Besides blogging, I have completed a manuscript titled Calling the Shots: Navigating Your Way Through the Medical System. The book describes how patients can advocate for themselves through today’s often-frustrating, often-difficult medical landscape.

I got the idea for my book when I was diagnosed and treated for breast cancer. I encountered hostile doctors and rude receptionists, as well as kind, wonderful medical personnel. I learned the difference between poor and superb doctors, staff, and so on, and I felt I could have really used such a book when I was going through all of this medical crap.

My goal with this book is to help others. While I use my breast cancer experience as personal examples, the book is focused on helping anyone who finds themselves at the patient end of things.

The manuscript is publisher-ready, and I am choosing to attract an agent.

Interestingly, writing the proposal for an agent has been much more difficult than writing the book. But I wouldn’t change a thing because I learned a lot through the process. My proposal has been rejected by many, but one agent nibbled before she said “no,” and another simply LOVED the concept and the writing! Unfortunately, the latter had too much on her plate to take my project on.

Rather than be discouraged, I am now even more confident because an agent thought so highly of my work. Rejections don’t bother me; I don’t take them personally, and if an agent has advice on how to improve my proposal or my book, I will take it.

Besides Calling the Shots, I’m starting to work on a memoir, which will include my breast cancer story, but will not focus on it. I think it will focus on the theme of identity.

I have the poems for a collection of breast cancer poetry I want to publish someday.

And I think I have a novel in me. Maybe.

How does my work differ from others of its genre?

I think this is the most difficult question to answer because there are so many wonderful, authentic writers in the blogosphere, and each one of us adds to the fabric of health-related narratives.

What makes my work unique is my use of various narrative techniques to tell my own truth. I enjoy experimenting with short story formats to tell a true story. For example, I sometimes use the present tense to make readers feel they are experiencing a scenario I experienced at a particular moment. Other times I might begin a post with actual dialogue so as to “hook” readers in. I’m also an artist and once in awhile provide artwork to complement the narrative.

Why do I write what I write?

I blog to develop a sense of community, to be heard, and to help others know they are not alone. When I was diagnosed with cancer and undergoing treatments, I felt isolated and unheard. There were support groups, but they didn’t help me. I wish social media had been around then. Writing about my cancer experience is cathartic because I am able to process it and express myself freely and authentically. I am grateful to be in a community of like-minded individuals who may have differing opinions but who are part of a community that fosters mutual respect.

That being said, I want to write about topics other than breast cancer and even medical issues in general. The truth is, I love writing. About. Anything.

How does my writing process work?

I am never short of ideas, but I am often short of time. Motherhood and a career often interfere with my attempts at writing and my focus. But I wouldn’t have it any other way.

Yet, at the same time, I’ve realized that writing is a choice and commitment I must make every single day. For the next year I am committing to making writing a daily habit. I have fulfilled that commitment today; as I write this, it is 2:20 a.m. and my daughter is fast asleep.

In my blog, I often use writing to process trauma. I find it so very difficult to write while I’m in the middle of distressing times. I admire writers who can write while they find themselves in the midst of chaos. I need a bit of physical and emotional distance before I can write about it.

Now about the craft of writing. Generally, I love, love, love revision. Revision is more fun for me than creation because with revision, I already have something to work with. I aim for concise, effective writing. My blog posts take less revision than, for example, my book proposal, but I enjoy the process of making all of my work the best it can be.

For me, technology has a direct impact on my writing process. I use my laptop; I use long-hand only when I journal. I think better when my fingers are on the keyboard. I use Evernote to help me keep track of writing topics. I use Word when drafting, but I’m considering using the Scrivener program for my memoir. Scrivener is designed for writers and can put material in manuscript format. I’ve been tinkering around with it during my 30-day free trial and like it for organizing thoughts. If I decide to use this program, I’m sure my writing process will change, and this scares me a bit.


I don’t believe one has to be inspired to write; for me, it’s the other way around — I write to be inspired.

One person who inspires me and who will be taking the baton in next week’s blog tour on July 28 is the terrific, inspiring blogger AnneMarie Ciccarella, at Chemobrain ….. In The Fog. Besides sharing her experience with chemobrain, she is a tireless advocate, fearless friend, and engaging writer. She takes a firm stance in advocacy and patient empowerment. AnneMarie speaks out about metastatic breast cancer, and I’m sure readers (me included) would want to know more about her writing process. If you are not yet familiar with her blog, please check it out.

Do you enjoy writing? Why or why not?

If you write, what is your writing process like? I would love to know.

If you are an artist of any kind, what is your creative process like?

Please feel free to leave a link to a blog posting. I will certainly check it out.