Tips for the Newly Diagnosed

Posted on: December 19th, 2014 by
8

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This week, someone I know told me her mother was diagnosed with breast cancer a few weeks ago. She described this experience as a rollercoaster, a very fitting metaphor, and then asked for my advice. My first thought was, “Damn, another person diagnosed with this beastly disease.” My second thought was to offer some advice she and her mother would find helpful.

So I gave some advice.

And that got me thinking that I should write a post to address this very important topic. I remember being a breast cancer newbie as if it were yesterday, and I experienced so much confusion and emotions.

I’m hoping this post helps those who are newly diagnosed and I’m hoping that others reading this post will add their advice in the Comments section. After all, the breast cancer community is a community where we help each other.

That being said, here are just some of my tips for coping with a new breast cancer diagnosis.

You can experience a wide array of emotions — such as grief, fear, panic, anger, depression, disbelief, and sadness. This is normal. Any emotions you are going through are normal considering the heavy weight of diagnosis. Don’t pressure yourself to feel or react a certain way or to react to your diagnosis the way others expect you to. Let yourself scream, cry, punch a pillow, and so on. There’s no right way to handle cancer.

Don’t feel you must rush hastily to make medical decisions. Newly diagnosed people often feel pressured to decide a treatment plan immediately. While you want to address your illness promptly, you have time to consider your options. In addition, you need to make the decision that is best for you.

Choose doctors you feel comfortable with. Too often we don’t speak up regarding our own health care. Seize the reins of your own medical care and advocate for yourself. Feel free to get a second or even third opinion. If you are uneasy with a doctor, following your gut instincts is a good game plan.

Seek support. Having breast cancer can feel isolating. Take advantage of the wide array of support systems available. If you have a supportive family, spouse, etc., feel free to open up to them. The American Cancer Society has various programs and services. For example, when I couldn’t drive due to surgery, the organization paid for my cab rides to and from doctor appointments. Support groups and/or counseling may be helpful. If your location has a Gilda’s Club, I strongly recommend this support network. When I was newly diagnosed, I walked into Gilda’s Club Chicago, and it was one of my lifelines. If you are social media savvy, consider participating in #BCSM (Breast Cancer Social Media) tweetchats on Mondays at 9-10 p.m. US Eastern time. A wide variety of excellent breast cancer blogs are available to help you feel less isolated.

Don’t compare yourself to others’ treatments/outcomes. Each person’s breast cancer is different, kind of like a fingerprint. Don’t compare your treatments and outcomes with those of others.

Don’t pressure yourself to “get over it.” I’ve been told this on several occasions. Breast cancer is a big deal, and everyone heals physically and emotionally at a different pace. Be patient with yourself. Be kind to yourself.

I hope you have found these tips helpful. Seek out the help you need and just put one foot in front of the other, and you will get through this ordeal one step at a time.

"Diagnosis"

“Diagnosis”

For those who have/had breast cancer, what advice would you offer a newly diagnosed patient?


Exercising Those Demons

Posted on: December 12th, 2014 by
10

Several months ago, I joined a new gym. My previous fitness center had too many problems — too expensive, too many insensitive personal trainers, too many members who thought they were training for the Olympics, and eventually too many people turning the place into a meat market.

I never fared well in the meat-market culture, and I have fared even worse since breast cancer.

Maybe it’s because some of my meat — namely my breasts — was amputated and replaced with artificial substitutes. While I was a member of this fitness center, those body-image demons would emerge.

So I bid adieu to the meat market, and found an excellent, new, inexpensive facility in my park district. The gym meets my requirements: an indoor walking track and a pool. The weight machines are a bonus. The indoor track is fantastic and will serve me well. Oh, and get this, for the geriatric and/or ailing crowd, there are great classes like Aqua Yoga and Aqua Arthritis in a smaller warm pool. Not only do these classes provide great exercise, but they meet one’s (OK, my) needs for low-impact relaxation.

When I joined the Aqua Arthritis class, however, the senior citizens eyed me suspiciously. After all, I look young and fit. In fact, I look like I’ve never had an unhealthy day in my life. What was I doing in this class, some asked me in a friendly manner. I perceived that the instructor was also curious.

After all, what serious medical problems could someone like me have had?

Each student was forthright with the instructor and each other about his or her medical problems — knee replacement surgery, severe arthritis, back problems, and so on. When I finally told them about my cancer trauma, a hush fell over the group. It turns out that that someone as young- and fit-looking as me belongs in this group after all.

No one can ever judge a book by its cover. I should know — I put up a facade of emotional health, but the cancer demons have muddied my pages but good. And, disappointingly, although I removed myself from the meat market, body-image issues have continued.

I’m still self-conscious about my body in the locker room but also, oddly, when I’m swimming laps. The large pool’s lap lanes are sometimes brimming to the maximum, and I have to share a lane with someone. The last few times I shared a lane, I got paranoid that the other swimmer was looking at my fake body, despite my modest, one-piece swimsuit. Not a rational fear, but there you have it.

Pool

In addition, this pool has a deeper drop than other pools I’ve swum in. The last third or so of the pool has a 10-foot drop, and even though I can swim tolerably okay and have successfully swam over the deep end several times, I get scared that I will drown. Nevermind that lifeguards are ever-present. Looking at the water, I can tell it is so deep and I am so small in relation to it. This fact, plus my body issue demons, have overwhelmed and intimidated me. So I did what any backward-thinking individual would do:

I stopped swimming.

Some friends (OK, many) have pressured me to start swimming again to get the exercise my body and psyche need and crave. To complicate matters, this year has brought foot surgery, a long recovery, and most recently plantar fasciitis, making walking-as-exercise impossible for now. And that really sucks because a) I love walking and b) I don’t have body-image issues when I walk.

Despite my hesitation to start swimming again, I’ve decided to take the plunge and swim laps again.

My gym bag is by the door.

Tomorrow my swimming hiatus ends.

If I have to share a lane, and sit with body-image issues, so be it.

Before cancer socked me good, I was athletic and confident in my body. Now — multiple physical and invisible scars later — I am a novice once again.

And as I tread uneasily across the deep end of the pool, I will try to be brave. And I will embrace gratitude that my inner strength is greater than my fear of drowning in the unknown.

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Do you find exercise is more of a challenge because of cancer and its treatments?

Feel free to share your stories. I would love to read about them.


Survivorship by Design

Posted on: December 4th, 2014 by
14

Not long ago, Marie Ennis O’Connor of Journeying Beyond Breast Cancer posed an excellent question on one of her posts; she inquired what our particular style of illness was. She based this question on Anatole Broyard’s book Intoxicated By My Illness, where the author says, “Every seriously ill person needs to develop a style for his illness.”

I left the following comment on her post: “I have worked very hard to cultivate my style of dealing with breast cancer and its aftermath. I try to shelter myself from too much information on the Internet, as what I’ve often found is beyond scary and really doesn’t serve me. My purpose is two-fold: 1. To be good to myself and instead of giving too much of my time, effort, etc. to others who drain me, to give that time to myself and 2. To help educate others about what it’s like to be a breast cancer survivor and lend voice to this experience. In doing so, I am also helping myself as it’s cathartic and therapeutic to write and be heard.”

Now, looking back, I realize I was really discussing my survivorship style, rather than an illness style.

So let’s talk survivorship.

Everyone who considers him or herself a cancer survivor has an approach unique to that person. I am no exception. For me, survivorship is often a haphazard array of feelings scattered like pieces of a train derailment. Too many things seem out of my control and I often find myself neck-deep in ugly cargo.

But to a great extent, I have also designed my survivorship experience. At some point — after recovering somewhat from cancer aftershock — I decided survivorship would not define me, but I would try my best to define what it should look like.

Here, then, are the ways in which I’ve decided to create a survival culture to help keep the Sword of Damocles at bay. Caveat: Each person is different, so what fuels my anxiety might alleviate others’ anxiety. That being said, here, then, are ways I’ve designed my survivorship to help minimize stress.

Control time on the Internet. Spending too much time on the Internet, reading too many impersonal articles on cancer hinders my emotional recovery. I get cancer-blitzed by information overload, and then I sometimes go to that dark place. This is, understandably, harmful to me. I also don’t fare well reading cancer-related material at the wrong time — before bedtime or in the middle of the night. Doing so stirs up too many triggers and leads to insomnia. Not healthy.

Limit my information sources. This goes hand-in-hand with my first point. My number one go-to sources for information are my doctors. I channel their knowledge into me and present my questions to them rather than Google, Ask.com, and the variety of websites out there. I’m lucky to have awesome physicians who are knowledgeable and treat me as the person I am, not just a patient.

Avoid toxic people and set boundaries. You can read more about this here.

Be my own guardian. I must monitor books I read and films I watch. It’s like I have an internal review board making decisions as to what’s appropriate for my psyche. Even before I was diagnosed with cancer, I found it difficult to watch movies where someone was dying of cancer.

Now I find it impossible.

As much as I want to, I cannot handle the stress of cancer-related print tomes and film.

For example, I wanted to see the movie The Fault in Our Stars and read the book on which it was based, but I knew I couldn’t handle it. When the movie finally made its way to the second-run cheap theaters, I came really close to buying a ticket for the show. I felt ready to handle it.

I was in good spirits, feeling rather upbeat. But then my inner censor kicked in and kept me from seeing the movie. As much as I wanted to go, I knew that doing so would be detrimental to my mental health.

I know I’m missing out on genres of excellent, quality cancer-related material, and this pains me. But I’m too vulnerable to partake in many cancer storylines, and this sometimes makes me feel like I’ve failed at some level. But, then again, it’s a strength to know what I can and cannot handle.

Stay connected to the human story and community. This seems contrary to the previous point, but I read as many cancer-related blog posts as I can because they 1) are outstanding pieces of literature that speak to me and 2) enhance my feeling of connection and community to other survivors. The human story is more powerful than objective information on a medical procedure, for example. At a fundraising event, I was chatting with a nice gentleman who, upon learning I was a blogger, raised the issue of what blogs have to offer the field of medicine. I replied, “The field of medicine needs these human stories.” Upon his quizzical look, I added, “Never underestimate the power of the human story.”

Lend voice to the cancer experience. The world needs our collective and individual voices. Cancer slam-dunked us into a cesspool, and we writers have the right to put our voices out into the world and be heard. As a survivor, I feel that bearing witness to the cancer and survivorship experience is cathartic and strengthens me.

No, we should never underestimate the power of the human story. And whether our survivorship styles are similar or different, they are uniquely our own. Healthy Privilege Pic

How do you handle survivorship?

Do you feel you have designed your survivorship experience?


A Thanksgiving Letter

Posted on: November 25th, 2014 by
8

Dear Arielle’s Birth Mom:

I wish with all my heart that you could read this letter.

Here in the United States, we are soon celebrating a holiday known as Thanksgiving. It involves friends and family getting together over a bountiful meal to celebrate all we are thankful for.

It is my favorite holiday because it focuses on gratitude.

And I am so grateful to you for giving me the best gift ever: our precious child. I say “our” because she will always be your daughter as well as mine.

Always and forever.

I can’t imagine how difficult it was — because of dire circumstances in your country — for you to have painfully decided to give her up. In adoption circles in the US, we say that a child is “placed for adoption.” But that’s not true in your case: you made the heart-breaking choice to give your precious baby away, hoping she would find a good home somewhere in the world.

I assure you that your dream for her has come true. Arielle (that’s her English name) has found a wonderful home in America, a home of love and happiness and daily laughter. A home where I work hard to build her self-esteem. And she has educational and future vocational opportunities here that she unfortunately couldn’t have in her birth country.

Let me tell you about our six-year-old daughter. She is a joyful, sweet child who leads a happy life. She enjoys her weekly ballet classes and watching cooking shows on television. She wants to be a ballet teacher-chef-princess when she grows up. She doesn’t want to be a school teacher because she sees how hard I work grading college papers and preparing for classes. I totally understand.

Arielle after ballet class

Arielle after ballet class

Her favorite colors are “pink, purple, and magenta,” and she loves it when I polish her nails with these colors. Her favorite animals are horses, although she is too scared to get up close and personal with such magnificent animals. Our daughter is shy, but there’s nothing wrong with that. I was shy at her age.

At age four. She surely loves purple!

At age four. She surely loves purple!

She’s lost three baby teeth thus far, and one is loose. Her permanent teeth look good so far.

She and I are both artists. She has a talent for drawing and painting, and I am encouraging her talent.

Our daughter is a hard worker, as she always volunteers to help me around the house. She also has amazing compassion and kindness. She enjoys helping others, even our cats. I remember the time she yelled at the veterinarian because Arielle thought the vet was harming the animal. After I had foot surgery last year, Ari insisted on changing my dressings. To spare her from what would be a scary sight for someone so young, tender, and sensitive, I refused and insisted on changing my own dressing. She wouldn’t stop sobbing until I relented. She changed my dressings like an expert and was happy to have done so.

I think she will wind up in an occupation where she will help others. Perhaps a nurse or doctor. Perhaps a social worker. OK, perhaps a social worker-chef-ballet teacher-princess.

My concern is that she will get so wrapped up in helping others, she will forget to take care of herself first and foremost. I’m encouraging her to be a carefree child and trying to instill the value that it’s totally acceptable to take care of oneself.

Like many six-year-olds, Arielle has a burning curiosity about everything. I am taking advantage of this and as often as I can, I take her to cultural activities in the Chicago area where we live. I’ve taken her to ballets, plays, and museums. We celebrate the Chinese New Year, and I am forever a student of Chinese culture, so I can help Arielle know and appreciate her heritage.

Arielle at a museum

Arielle at a museum

I am serious about her learning through books and in the world at large. I want her to grow up educated, with a love of learning, and cultured. I’m hoping to eventually take her on more trips in this country, as well as journeys abroad.

When she is old enough, we will visit China so she can see her native land and meet the kind, generous people there.

I wish with all my heart that we could meet you. I know it would be a good thing for Arielle, and I’m hoping it would be a good experience for you, too. It breaks my heart that we won’t ever get to know each other.

One day, I’m sure, our daughter will want to know about the woman who birthed her. It pains me that I don’t have any information about you because finding birth parents in China is next to impossible. So we will never have answers.

I am ensuring she never loses sight of her Chinese heritage. For three years prior to adopting Arielle, I studied Mandarin intensely. I’m not fluent by any means, but I was able to communicate well with the people in China. It’s a beautiful language that our daughter should learn. Up until now she has shown no interest in the language, but now she is.

Luckily, America and particularly Chicago are melting pots, with many Asians and Asian-Americans. Still, the country has a long way to go, as there is racism.

Since white people are the majority in America, Arielle lives in a culture of white privilege. This has been a challenge for her lately. However, we just joined a support group where many Chinese children get together twice a month for fun activities. It’s a mentorship program with Chinese and Chinese American college students offering their time and guidance, helping kids feel good about being Asian in a white world.

Ari graduating preschool

Ari graduating preschool

I adopted Arielle when she was 13 months old. It bothers me that I missed important milestones up until that time, such as her first birthday, first tooth, first motor skills. However, I’m grateful to have witnessed many, many milestones, such as her first step and her first English word. It saddens me that you have missed and will miss even more milestones than I did.

A recent picture of our six-year-old.

A recent picture of our six-year-old.

If I had your address, I would frequently send you pictures of our daughter, and I would tell you all about her milestones. In my fantasies, you and I would get to know each other and become friends.

So, this Thursday, Arielle and I will celebrate Thanksgiving with good friends. I will feel your presence and absence.

There’s a place for you at the Thanksgiving table, and there will always be a place for you in our hearts.

I love you,

Arielle’s Mom

Arielle and me

Arielle and me


5 Ways to Set Boundaries

Posted on: November 22nd, 2014 by
14

It’s not New Years, but I’m making a resolution, and that is to honor the word “Boundary.”

Boundary. It’s my word for today, the rest of the year, and forever. Before cancer hit, I didn’t know how to set boundaries with people. Or maybe I knew how, but was too afraid of being assertive enough to stop people from draining me. I allowed others to wreck havoc on my life and to take advantage of non-assertive me.

I’m a relatively nice person, but in years past I have been way too nice.

When cancer wiped its filthy feet on my doormat, however, I had to recalibrate how I was going to interact with the world and live my life, for however long that might be. I also had to redefine the word, “life.” Despite knowing the obvious definition, I realized that a life made miserable because of toxic people was no quality life at all. If I continued living without setting and keeping sufficient boundaries, then I wasn’t really living.

Setting boundaries is actually pretty easy, but sticking to them is a constant battle. And that’s because from now until always some people will try taking advantage of others. It’s just part of the nature of people.

So I came up with a list of those seemingly elusive boundaries. This how-to helps me continually take pause and remind myself of what’s important in life. I must remind myself each day to honor this list, and I’m hoping it helps you too.

Here, then, are my top 5 ways to set boundaries. And with the holidays fast approaching, this short list may become especially handy.

Know your priorities. Figure out what is important to you. You can do this in a list. Despite all my important obligations that pull me every which way, my priority is my daughter. I cannot allow anything to override my commitment to her.

Commit to yourself first. Perhaps this should’ve been step No. 1. After all, if you don’t take care of yourself first — especially if you are a caregiver of any sort — you cannot be of good service to others and/or your vocation. Taking the time for a massage, exercise, hobbies, sleeping well, and eating healthy is time well-spent.

Avoid toxic people. Avoid those who drain your time and energy for no good reason. Distance yourself from negative people, for they often take great pleasure in bringing you down. People who gossip are notorious for creating an air of negativity.

Keep drama off your radar. If you can, minimize how involved you get in the drama of others. Don’t stew in the maelstrom stirred up by people with a penchant for “crises.” Instead, take a deep breath and disconnect from unnecessary drama.

Avoid negative self-talk. Sometimes we are our worst enemies. I find it so easy to lapse into negative self-talk. But rather than saying we cannot do something, we ought to say we can accomplish what we set out to.

I’ve found these strategies essential to my physical and mental well-being. Sometimes, I let the boundaries slip, and I reassess how I could more effectively set and honor them.

Boundaries

Let’s just say I’m a work in progress.

What boundaries have you set?

How effective are you at setting boundaries?

Anything you would add to the list?


Tightrope

Posted on: November 7th, 2014 by
6

Last Sunday, high wire artist Nikolas (Nik) Wallenda made history by walking a high wire with no net from one of Chicago’s Marina City skyscrapers to another skyscraper and then to another skyscraper — this time blindfolded.

One of the Marina City towers

One of the Marina City towers

Chicago and the world at large held their breath, as the wind gusts had picked up, making this venture even more risky.

Thankfully he made it. And made it look easy.

That night, right before his high wire feat, Chicago residents and visitors used many words to describe Mr. Wallenda — from crazy to daredevil to courageous.

I admit, I first dismissed his high wire act as sensationalist and the act of someone who had a death wish. But as he tamed the high wire relatively quickly, I realized I had a lot in common with Wallenda. (Though even the thought of climbing a ladder nauseates me.)

It is a cliche but it is true: since my cancer diagnosis and treatment, my life has been a high wire act. I often unwillingly find myself on the tightrope, always balancing between courage and fear.

Chicago with River

This is, by far, the most difficult task for me. I define courage as acting in spite of one’s fears. And I do. I never give into my fears, but I’ve come close. In fact, where cancer survivorship is concerned, I always come close to losing my balance and falling into the dark abyss of fear and inaction. Fear of recurrence, fear of oncology followups, blood tests, and all things medical plague me.

But I refuse to become engulfed by fear. This is my act of defiance. Like a high wire artist, cancer survivors and patients more often than not show perseverance in spite of adversity.

Do you often find yourself on a “tightrope”?

If so, how do you handle it?

To see Wallenda’s feat, click here.


Divorce and Grief

Posted on: October 31st, 2014 by
12

To date, my most popular post is First Comes Breast Cancer, Then Comes Divorce. This post resonated deeply with many women who wrote candidly about their difficult marital situations.

Reading their comments was heartbreakingly painful. I could hear my readers’ isolation, loneliness, fear — and, of course, grief. And I realized that, although I wrote a second part in this series, which expressed how I’ve gone on with my life after divorce, I inadvertently left out the middle part — about the grief involved with a divorce. And I’m hoping that, through this post, I can help such readers feel less isolated and alone, as well as educate others about what divorced people often go through.

Disclaimer: I never recommend getting or not getting a divorce, as it is up to each individual or couple to choose their own marital path.

Divorce is a Death

People get divorced for a plethora of reasons that go beyond the scope of this post. The one commonality that divorcees experience is the grief — heart-wrenching, intolerable, searing grief. Divorce is a death on many levels, and the resulting grief can be as deep as that from having a loved one die.

No matter how problematic a marriage is, divorce, like death, deals with loss — the loss of a partner once thought a forever-partner, the loss of all familiarity, the loss of routine, the loss of identity as a couple. And there is the added pain of knowing that one’s former partner is possibly getting on with his or her life, while one is picking up the pieces trying to figure out how this marriage exploded in his or her face.

Speaking of face, one also loses face — having the social stigma of being a divorced person. While divorce is common in our culture, people still judge you. Grief and embarrassment erupt when someone makes the offhand comment that “See, some people don’t try hard enough to stay together.”

It’s the grief of being a pariah.

The happy divorcee is a myth, glossing over the underlying grief.

***

In my case, the grief of separation and divorce was unbearable. For months, I couldn’t walk through a grocery store without sobbing, for I became depressed about not buying food and creating dinners for two.

Now there would be dinners for one.

So I avoided the grocery store whenever I could, as it was the source of so much pain. Instead, I chose to go hungry or would resort to junk food, fast food, and all other things-you-should-not-eat foods. Whatever I ate was unappetizing to me. I didn’t enjoy food.

In fact, I had no joy. Period.

When I came home from work, I had nobody to tell how my day was. I no longer had my life partner to share laughs or inside jokes with.

It was quiet.

Although my marriage was awful, I forgot the terrible things and remembered the good times. Everything reminded me of my ex-husband: songs on the radio (to this day I have difficulty listening to them), places we’d travelled together, the change of seasons, adventures we’d had, the summer Olympics track events that we so loved to watch (he was a former track athlete).

Although I intellectually knew that divorce was the best option for us, my heart said otherwise. I wanted him back and found myself bargaining with God that I would be a better person, if only I could have my husband back. I wanted him with me every day and night.

Given the failed marriage, this was impossible. There was no going back. And realizing this shot me into a cycle of renewed denial and anguish. To this day, I’ve kept our wedding picture; it is hidden away in my “Marriage and Divorce” file. I still cannot bear to look at it.

The holidays were really rough the first few years. I cried, lonely and longing for my husband. Knowing we could never live together again was a finality I couldn’t bear nor accept.

Although the divorce was mutual, I was the one who moved out. I had to adjust to a new apartment, a new neighborhood, and a new life. It was incredibly difficult. I remember the first night alone in the apartment, my purring cat kneading beside me in the covers on my pull-out couch, as I watched television on a 5-inch black and white portable TV my friend loaned me.

At first after our separation, we spoke on the phone every week. Each time I would hear his voice I would cry silently. Each time we spoke, there was a familiarity and an absence of familiarity between us. Eventually, we spoke on the phone once a month, then, after the divorce, once every few months. Speaking to him hurt me deep to the core. I missed him and felt I couldn’t go on without him. I eventually moved, changed my phone number, and I haven’t spoken to him in years.

Separation and divorce came on the heels of my cancer treatment. Such trauma during the same time period was too much for me to handle. I broke down and stayed in bed whenever I wasn’t at work. I had no appetite for life until my friends cornered me and insisted I get grief counseling of some sort. And counseling moved me toward a healing path.

I miss my ex-husband less these days, thanks to a variety of support networks I was lucky to have had. I still have grief pangs from time to time, but it is manageable.

Getting Help

If you are going/went through a separation and/or divorce and are having trouble coping, I suggest the following, which helped me through the nightmare known as divorce.

Seek out a grief counselor, a counselor of any sort, and/or grief support groups. My counselor was excellent and, as a bonus, specialized in helping people who had a history of life-threatening illnesses. She helped me cope with the isolation, loneliness, and grief of being divorced, as well as dealing with cancer aftermath.

Keep busy. Make lots of appointments with friends and get that social life in gear. My circle of friends kept me very busy, which provided a great distraction from the pain.

Find a hobby or continue with an already established one. For me, it was oil painting that calmed my near-inconsolable heart. I enjoyed drawing and painting and took classes. I also fed my love of cooking by hosting dinner parties for friends. I was able to cook again, and that got me back into grocery stores finding healthy foods.

Keep a gratitude journal. This helped me see that my life was worthwhile, and that many positive changes were happening in my life. Besides, writing was cathartic.

Exercise. If the resulting endorphins could be bottled and sold, they would be the hottest-selling item in the history of retail. During the time of my separation and divorce, I had been a jogger and would force myself from a state of self-pity to self-action. And I felt much better after a good run.

While my life has gone in an unexpected direction, these hardships have made me the person I am. Divorce feels like the end of the world, but it is not. Life feels like it’s ending, but it is not. Life, albeit different, is just beginning.

Tree and light

If applicable, how are you coping/have you coped with the grief of separation/divorce?

Do you have any advice for those going through separation/divorce?

Feel free to leave comments and feedback.


Author Love

Posted on: October 24th, 2014 by
8

Our society often falls prey to celebrity worship. We idolize those who grace the red carpet, and, even worse, we hang onto their every word.

Words are powerful.

Whether film icons or musicians, celebrities have a lot to tell the world. But first and foremost they are human beings, and that makes them like the rest of us ordinary folk — flawed. Their words, even if well-meaning, can be tainted with strange ideas that sway the mesmerized public.

And then there are authors. Masters of the written word.

Although they’re also flawed human beings, they sure don’t get as much attention as they deserve. With the exception of authors such as J.K. Rowling, our culture generally doesn’t acknowledge these wordsmiths the way they ought to be acknowledged.

Many, many authors are the unsung rockstars.

***

This week has been extraordinary. A few days ago, an author of children’s books came to visit Ari’s school and talk about how he grew to love reading and about writing. Ari came home gushing with excitement about Aaron Reynolds, author of Chicks and Salsa among others. Ari remembered a lot of what Reynolds imparted to the elementary school students. I could tell she was mesmerized by a “real life” author speaking to her and her peers.

Last year at this time, Ari hated reading, thanks to her Steroid School. It broke my heart, as I have so wanted her to share my love of reading. Sure, we went to libraries and bookstores, but nothing seemed to ignite in her a passion for books.

Until Aaron Reynolds, that is.

When we found out Reynolds was doing a meet-and-greet book signing at our local library a couple of days later, we just had to go. I picked Ari up from school, and we made a beeline for the library, as we squealed in delight. As soon as Ari saw him at a desk signing a book for another child, she started jumping up and down.

Before book signing, name on a Post-It to make sure the author would spell her name correctly

Before book signing, name on a Post-It to make sure the author would spell her name correctly

As we moved up in line, I looked around and was so touched to see so many children in happy anticipation of meeting this author. He connected well with kids of various ages. Ari’s eyes kept staring at him in disbelief that she would be face to face with someone so cool.

Finally, her moment came. He chatted with her and signed her book. It was a pure moment, a moment Ari and I won’t forget.

Aaron Reynolds is a true rockstar, for there is nothing more important than igniting a spark in the mind of a child.

Have you been to a book signing?

If so, how was it?

During Book Signing


A Kinder, Gentler Reconstruction

Posted on: October 17th, 2014 by
8

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.

Hallway

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
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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?

Bittersweet

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?