School Number 2, Now Number 1

Posted on: August 27th, 2014 by
6

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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
9

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.

Spirituality

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
18

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

Diagnosis2

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
9

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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.

Keyboard

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.


Pet Therapy

Posted on: July 10th, 2014 by
4

My eyes were red and swollen from crying all night.

The day before, my surgeon confirmed my worst fear: I had cancer.

After I got the fated phone call, my then-husband and I decided to adopt a cat at a local animal shelter the very next day. It would be a joyful distraction, we reasoned, and I had been longing for a cat for years. (I do love all animals, but I’ve always had a soft spot for cats.)

Now, at the animal shelter, I was too bleary-eyed to notice the ugly brown tabby that grabbed me with her paw as I passed her cage.

I stopped, considering her. She was purring loudly and gazing at me with what seemed to be a look of love, as if she sensed my hurt. She persisted, grabbing me with the other paw, demanding that I pay her attention. I told the shelter volunteer I was interested in holding the animal, jokingly telling my husband “Oh, the cat is nice now, but watch it scratch my face off!”.

I sat down and the volunteer gently placed the cat on my lap. She purred and purred as I stroked her dull fur, and she sat on my lap as if she belonged there. She looked into my eyes, perhaps searchingly, perhaps knowingly, but the magic was there.

The magic being that for the 10 minutes I held her, cancer did not exist. Terror did not exist. Time stopped, and all I felt was complete joy. I forgot about my tumor. I forgot about doctors. As the volunteer pried her from my lap, the kitty kept trying to cling to me. And I longed to have her in my arms again.

A spay and a few vaccinations later, Cosette (the name we gave her) was in our home. But something was terribly wrong with her.

As I was getting lost navigating through doctors and dealing with my new-found status of cancer patient, I was losing my cat.

She was refusing to eat, losing weight, and veterinarians couldn’t figure out what was wrong. They told me that this six-pound cat wasn’t worth keeping alive. At around the same time, an oncologist told me that I would probably not live.

Both of us were in a real predicament. Hearing about Cosette’s probable death would be hard news for anyone to take, but for me going through cancer hell, it was too much. I cried a lot, but I still held her weak, limp body in my arms and listened to her purring — unsure of our fates. There we were, both ill, with uncertain futures.

My lumpectomy was scheduled (I initially chose lumpectomy with radiation), and I kept obsessing that the cat would die first, and then I would die. I knew she needed medical help fast, so I called the shelter, which had an in-house veterinary clinic. I spoke to a kind veterinarian who was a cat specialist. I explained my situation: that I had cancer and was having surgery in a few days. She reassured me that the cat could still bounce back, and she offered to hospitalize Cosette for free while I was in the hospital. I agreed.

It turns out, Cosette and I were in our respective hospitals at the same time. We had IVs at the same time!

I and those annoying drains were finally released from the hospital. A couple of days later, my brother drove me to the shelter to get Cosette, who was very much alive — and pretty. Turned out she had a severe upper respiratory infection that demanded immediate attention. She was now good as new, purring up a storm.

Cosette

Cosette

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Throughout chemotherapy and radiation treatments, she was my constant companion, running to me when I was crying, jumping on my lap when I needed hugs, and refusing to leave my side when I was so very sick. As I convalesced, she sat on my lap and purred. And this did me a world of good during the most frightening time of my life.

We helped each other through the tough times. Despite how sick I was during treatment, I still managed to take Cosette to her followups. She and I were a team, cheering each other on to embrace life.

Today, 13 years later, Cosette is a happy geriatric cat who still doesn’t leave my side. We are close and we still take great care of eachother. She has helped me through my divorce, a few moves, several surgeries — including my DIEP — and lots of medical scares. She was with me when I got the news that my friend Faun died of metastatic breast cancer.

And now, as I write this post, she is with me — curled up by my feet. It is a widely known fact that pet therapy helps patients heal and/or cope with trauma. I’m not saying Cosette’s presence resulted in NED for me. However, her presence certainly calmed me and helped me cope with all the difficulties life dished out, especially cancer diagnosis and treatment.

A few years ago, another feline, Hemi, aptly named for his purrific style and flair, joined our family. Cosette is the dominant cat, but for the most part, they get along. Hemi is a sweet tuxedo Manx, who also offers love and support when I and Arielle need it most.

Cosette and Hemi chilling

Cosette and Hemi chilling

Hemi

Hemi

I know people who never want to live with animals. They are entitled to their choice, of course.

But I know that my life is truly enriched by two very special cats.

Do you believe in pet therapy?

I would love to hear your stories about your pets. How have they helped you?


T&A at the TSA

Posted on: July 2nd, 2014 by
22

At the airport’s security check, I approach the body scanner with trepidation, knowing about the vow I took years ago: if confronted with such a machine, I would refuse a full body scan.

After all, I’ve had my share of scans, thank you very much.

I certainly don’t need one with the general voyeuristic public looking on.

And I certainly don’t want TSA and airport security employees seeing my body parts. It’s bad enough that I’ve had body image issues since breast cancer. It’s bad enough that my body has been altered, fabricated if you will, to help save my life. I have to live with my altered state every day.

I don’t want the world at large gawking at my fake breasts or my massive below-the-belly scar from my DIEP flap surgery. Yes, I know the Advanced Imaging Technology is supposed to be minimally invasive, but I don’t buy it.

So now I move up in line. Now is my time to face down this mechanical invader that everyone is nonchalantly going through. I tell the security person, “I can’t go through this machine. I’ve had breast cancer and don’t want to have any images of my body taken.”

I see a brief flicker of compassion in her eyes before she calls for a female security officer who will do the pat-down. I swallow hard as she approaches me. After all, I am a pat-down virgin and have no idea how I will feel having my privates — and privacy — invaded.

The security officer makes me point to my possessions in the bin on the conveyor belt, and she gathers them up. She is about to feel me up pat me down in front of every Tom, Dick, and Harriet looking on when standing on line awaiting their turn to have their privacy violated.

She sees my hesitancy and then asks me if I would rather be felt up patted down in private.

Duh. Yes.

We go into a private “room” within a glass room. It is her, me, and another female security guard. The security guard I met first is the one talking to me and groping me patting me down. Before she gets started, she says that when she handles “sensitive areas,” she will feel them with the backs of her hands.

She is referring to my breasts. A bit ironic, considering “sensitive” no longer describes my breasts.

Come to think of it, she never says the word “breasts.” Why is that? Is it taboo for security personnel to say that word? Maybe calling them “sensitive areas” is a form of denial.

After she sweeps the backs of her hands under my “sensitive areas,” I wonder if she can feel that one breast (the one that had had the cancer) is significantly smaller than the other one. I am wearing a sports bra instead of my mastectomy-with-prosthesis bra on. So the asymmetry is apparent.

Or is it only apparent to me?

I’m sure she can feel the difference between my breast sizes, I think.

Then again, maybe she can’t.

After the breast test, she works her way down my body and then sweeps her hands too close to the groin area for my comfort. She has woman-handled every part of my body, it seems, and I feel violated.

She then gives me permission to leave and catch my flight. She wishes me safe travels.

As I head toward the gates, I pass the body scanner. And I realize a choice between digital exposure or a pat-down is no choice at all. Things sure get complicated when one has had breast cancer — or any medical condition for that matter.

Luckily, I do have a safe flight, but my journey through the airport felt anything but safe.

Where the pat-down took place.

Where the pat-down took place.

Has having breast cancer affected your airplane travels?

How do you feel about the airport’s full body scanners?

Please feel free to share your stories — the good, the bad, and the ugly.


Kindergarten: The Year in Review

Posted on: June 20th, 2014 by
8

Ari is now in camp, reunited with all her friends from pre-school. How each child has grown, both physically and emotionally! The camaraderie is as strong as ever, even though the students went to different schools during the year.

This summer is all about fun, not about the intense structure of school.

As was the case last year when she graduated preschool, I watched Ari graduate kindergarten this year with a beaming heart and brimming tears. This year, though, I mentally reviewed the school year as she pomped and circumstanced to the stage.

So, here are the challenges and highlights of the year, much on my mind now still.

Challenges

At the beginning of the school year, I decided to send Ari to a private school. Unlike the failing public school near me, this school seemed like a bright beacon of learning. After my informational tour of the school, I enthusiastically signed her up. I wanted her to have great educational opportunities, opportunities I never had when I was a child.

It was a financial sacrifice, I reasoned, but well-worth it.

While it was apparent she would receive a quality education, I had no idea how advanced the school was. Nobody on staff, for example, told me that most of the kindergartners had already learned to read fluently in the institution’s pre-school. The school’s goal, I later found out to my horror, was to produce gifted children.

Therefore, the students were expected to perform a grade to a grade and a half above the grade they actually were in, even if they weren’t developmentally ready. In kindergarten, therefore, Ari was expected to do first grade reading and math. This next year, Ari would be expected to be at the second grade level to the beginning of the third grade level.

The school is an academic treadmill.

In kindergarten, homework was intense and advanced. Ari’s reading and writing skills were understandably subpar according to the school. She had difficulty knowing most of the students could read and write fluently while she and some other students lagged behind. Her teacher tutored Ari and other kids in her unfortunate situation outside of class for free the entire year.

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Traveling to and from the school was also a challenge: the school is a half-hour drive from where we live. The commute tired us, and it was no small miracle that Ari wanted to do homework as soon as we got home.

Throughout the year I wavered between putting her in the local public school or keeping her at her current private school. I brought up this possible change to Ari a few times during the year, but she insisted that she stay at the school, for she loved her teacher and her best friend was in her class. There was no denying it: the staff and teachers were incredibly above-and-beyond friendly and vested in their students’ success.

Highlights Ari Art1

What she lacked in reading skills, she made up for in spirit. Much of the time, she did all her homework without my having to push her. Most of the time, she wanted to do homework. She showed true spirit through her true work ethic.

The year was wonderful for discovering Ari’s flair for artistry, and she produced some awesome artwork.

In addition, she and I worked together on school projects to put together creative posters about pandas, dinosaurs, a shop in the community (she chose a music shop), and community helpers.

Ari Art 4

To my relief, she managed to keep up with math and science and, at times, excelled. She had a wonderful science experiment for the school’s science fair.

Ari at Science Fair

She made friends and enjoyed playing with them on the school’s playground after school.

Her teacher was unbelievably great. She lavished love on my child every day, and Ari responded well. Her teacher clearly adored her and the other children. Ari glowed whenever she was with her teacher, and I have to admit that I was a bit jealous of their relationship. But I was mostly grateful that my daughter had such a wonderful, caring teacher. I don’t think Ari would have made it through the school year without her.

Ari Art3

In fact, I just received a lovely e-mail from her teacher saying she would love to tutor Ari for free during the summer to prepare her for the upcoming first grade year. She said she missed Ari and her smile, and she wants to give Ari some workbooks.

I want to take up the teacher’s offer and have Ari work with her, knowing the girl adores her.

After all, Ari is already enrolled at this school for first grade. She would benefit from tutoring in advance before being deluged with work.

The school is outstanding in so many ways; Ari would continue to learn so much there.

The institution would continue to challenge my daughter to the maximum.

And that is why we are walking away.

Getting Off the TreadmillAri Art2

A funny thing happened on the way to private school this year: the failing public school got a new principal. It is no longer failing, as academic scores have strengthened.

Go figure.

I’ve decided to save money and anguish by sending Ari to this public school, which seems to have more reasonable expectations, depending on the children’s developmental and social needs.

Ari keeps telling me she wants to return to the private school. I know I’m breaking her heart by separating her from her best friend and teachers who dote on their students.

But I’d rather break her heart now than break her spirit by sending her back to Super School.

After all, I’m raising a child, not a robot. I don’t need a gifted child; I need an emotionally healthy, well-rounded one. That’s why I’m pulling the plug on this “gifted school.”

Ari is an amazing person who loves learning. But most importantly, she is kind, sweet, funny, and joyous.

She deserves more than to live life feeling she’s always lagging behind her peers when, in reality, her now-former school pushes students too hard academically. She deserves more than to have her spirit continually crushed.

Ari will be just fine. And now that the decision has been made, so will I.

Ari Graduation

Have you ever been at a crossroads in your child’s/children’s education?

How do you feel about what the workload should be for elementary school kids?

Please feel free to leave a comment. I would love to hear what you have to say.


And the Survey Says….

Posted on: June 13th, 2014 by
6

I’m supposed to see my oncologist this summer. I pick up my phone. I hesitate. I tell myself I’m just not up to it and I’ll call another day. And I put down the phone.

This has happened now every day for awhile. I know that I will make that appointment.

But today is not the day.

I have to gather the strength and courage it takes to make an appointment for a followup visit.

Many emotions overtake me when I go to the oncologist, including high anxiety.

Understandable.

At my last appointment with my oncologist, he was kind as usual. So why the hesitancy to make the appointment and go? The answer lies in a survey.

Like so many hospitals, my hospital has a Center for Advanced Care, which is trying to be a kinder, gentler place and take stock of the whole patient. The staff wants to make sure that they are meeting the psychological needs, as well as the physical wellness, of the patient.

I think this is a great approach — to an extent.

My last appointment was a bit jarring for me, though, all because of a survey that patients are now told to take before seeing their oncologists. The survey asks you to rate your feelings on a scale of 1-10, with 10 being the highest level.

The minute I saw the questions, I totally got it. The staff wants to make sure I’m psychologically in a good place. To me, this is an oxymoron, as an oncology office isn’t exactly where you’ll find me in the best mental state. In fact, I’m usually in high-panic mode there. And I’ll bet that, for the majority of people, an oncology department isn’t the bastion of sound psychological wellness.

As I was filling out the never-ending survey, answering questions about my crying habits, depression, and so on, my heart started racing and I was feeling out of sorts: should I be feeling all the things the survey asked? I continued stressing. Then the next question asked me to rank my anxiety level on the aforementioned scale.

Being honest, I chose 9 out of 10.

Had I answered the survey at home, it would’ve been much lower, as I am not typically heightened emotionally. My nerves are in control in my native habit, but not so much in the sterility of an oncologist’s office.

After the survey incident and now really upset, I was ushered into the examination room. There I was sitting on the examination table, ready for the exam, when I heard that familiar knock on the door, followed by an unfamiliar smiling face. She introduced herself as a social worker and said it’s policy for her and other social workers to check with anyone who answered that anxiety-level question with a 3 or higher.

Of course, now my anxiety level felt like a 10.

“Is there anything we can do for you?” she asked.
“Huh?” I barely gasped.
“Why is your anxiety level so high?” she asked.
“Because I’m here,” I said.

And, with that, she quickly excused herself and left. And so did some of my anxiety. By the time my doctor entered the room, I was spent.

Don’t get me wrong: I like the idea of a survey and keeping a handle on how patients are doing, not just physically, but emotionally and spiritually. These social workers are so necessary. However, perhaps mailing the survey would have been a better idea — after all, I am less anxious on my own turf.

I think from now on I will try to be less stressed. And I will rank all my answers as a 1.

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Do you typically complete surveys regarding mental state at doctor’s offices?

If so, do you find these surveys helpful?


A Truly Phenomenal Woman and Book Review

Posted on: May 29th, 2014 by
4

Like so many in the world, I am grieving the loss of Maya Angelou, an articulate, brilliant individual who left a huge mark on the world. A literary genius whose writing captivated many generations, Angelou was also a Civil Rights activist.

I have always felt close to Angelou and wanted to meet her. While that never happened in person, I did meet her — through her outstanding, ground-breaking memoir, I Know Why the Caged Bird Sings. This famous book, which debuted in 1969, was way ahead of its time and tackled serious issues considered taboo at the time.

I Know Why The Caged Bird Sings covers Angelou’s growing up in Stamps, Arkansas, and St. Louis and without sound guidance from her parents. Angelou and her brother Bailey were raised in large part by their grandmother. Angelou’s life in the segregated, racist South is documented in this very human book with memorable truth-telling. I will never forget the scene when a white dentist refuses to help a young Maya suffering from a toothache. And a young Maya suffers a horrific tragedy that no one should have to go through. The trauma left her unable to speak for years. Ironically, it was after being voiceless for awhile that she eventually found her voice.

The book is a powerful testament to human triumph through adversity.

Angelou also infuses a great deal of humor in her memoir. In fact, I Know Why The Caged Bird Sings contains the funniest scene I’ve read in a book to date. I won’t give it away to those who haven’t yet read the memoir, but here’s a hint: it happens in a church. Completely hilarious.

I’ve assigned this book to students many times, and the memoir resonated with each student every single time. Times have changed, but her memoir is timeless. Angelou’s book is life-changing: it changed me. And I hope somewhere out in the world my former students are remembering how Angelou changed their world in an English class. And I hope that these students are changing the world for the better, as Angelou would want them to do.

The world has lost a wonderful human being, a soulful soul. She touched us in so many ways. But I’m heartened to know that the world was made a better place for having had her in it.

Maya Angelou

What is your favorite Maya Angelou work?

Feel free to comment on how this amazing woman has touched your life.


‘Oncologist’ Turned On a Dime

Posted on: May 15th, 2014 by
6

I judged him way before I met him. There I lay, on my sofa, swearing up and down that I would never, could never, ever see an oncologist.

I was in limbo. My surgeon told me that day — Almost-Botched Biopsy Day — he was pretty sure I had breast cancer. Pretty sure, but not definitely sure. (Two days later, he confirmed that biopsy results indicated I had cancer.)

But I couldn’t wrap myself around another thing the surgeon said on biopsy day, and that word was “oncologist.” I don’t remember the context in which it was mentioned, as the terror of that day and that word was overwhelming. I don’t even think I had heard of the word until that very appointment.

The Gainer Dictionary defined “oncologist” as “bogeyman or bogeywoman; see ‘czar of the cancer underworld.’”

The lines were drawn, and I hunkered down, determined to keep the oncologist on his/her side of the line and out of my personal space.

I was angry. I was hostile. Of course, that anger was partly a cover-up: for fear, for anguish, for pain.

And my declaration that I would never see an oncologist was somewhat arrogant. I was used to a life where I was the epitome of health. My doctors always admired me for taking such good care of myself. I didn’t smoke. Or drink. Or do drugs. I exercised regularly and ate right.

I would leave doctors’ offices with the confidence of an Olympic champion — someone who expected to succeed and who did. My physical exams were boring. And I was proud of that, believing wholeheartedly if I took care of myself, I wouldn’t fall ill.

And now a doctor had the nerve to tell me that I probably had cancer. How dare he? And, after my diagnosis, he told me I definitely had to see an oncologist. How double-dare he?

At the time, I thought, I would rather die of cancer than see a cancer doctor. Yes, seeing an oncologist was that terrifying. I. Would. Not. Go. My fear took the driver’s seat and hit the accelerator at 1,000 miles of panic per hour. My primary care physician immediately wrote a referral for me to see oncologist Dr. B. So I did the only thing I knew how to do.

I went.

***
So here I was in the cancer doctor’s examination room, feeling like someone on death row waiting for the executioner.

As I waited for the physician, my arrogance unraveled like surgical tape and I found myself bare, frail, vulnerable, and terrified. Deep down inside, I knew I wanted to live. And I was forced to be honest with myself: I needed help to help me live.

That’s when a human being walked in the room. He smiled, looked straight in my eyes, and shook my hand and said how nice it was to meet me. He also expressed how much he wanted me to live. He was kind.

He had a treatment plan. He explained everything clearly, listened to my concerns, and made it clear we were on the same team. I wasn’t just a patient to him; I was a person. And during that hour appointment my perception of the word “oncologist” turned on a dime.

An oncologist would be my medical champion, and I was grateful.

dime

What has been your experience with an oncologist/oncologists?

What characteristics does an oncologist have to have in order to gain your trust?