Matter Over Mind

Posted on: January 23rd, 2015 by
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In a previous post, I said I was too scared to write what I deemed a risky piece on my blog. This is that post.

Throughout my pre-cancer life, many people have admired my fortitude and tenacity. Tarnished by life’s traumas, I still kept my platinum mind focused. Many folks used to tell me I was the strongest person they knew: No matter how difficult the road, no matter the odds against me, I was a locomotive — confidently and courageously accomplishing my dreams and goals.

Then breast cancer came in 2001.

I am fortunate to have been NED (no evidence of disease) for so long. And I’m grateful for all my abundant blessings. Those with metastatic cancer have it so much worse than me, that it’s almost embarrassing to write this post. After all, comparatively speaking, I have it easier.

But now is the time for me to come clean.

I’ve been living with Post Traumatic Stress Disorder (PTSD) and panic disorder for 14 years.

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Breast cancer and, more specifically, its treatments assaulted my physical health. But this life-threatening trauma shoved in my face has truly been my Achilles’ heel.

My mental health has been compromised. My brain chemistry is forever altered — and not in a good way.

In my case, untreated PTSD results in sensory flashbacks, such as re-living the cancer experience every night, smelling the chemo room, feeling I am in ICU again, feeling the prick of an IV needle, tasting the metallic sensation of treatment, and generally living terror-filled days. Any thought, emotion, and/or image can cause some mighty heavy triggers.

It is hell.

It is isolating.

During the time of my chemotherapy and radiation treatments, my oncologist introduced me to a low-dose antidepressant and my internist prescribed a low-dose anti-anxiety medication. I had admitted to running into bathroom stalls at work to cry. My car was my confessional chamber, where I would collapse, curl up, pray, cry, and isolate myself from the cruel world. I had several public break-downs. My doctors sought to decrease my mental anguish.

Then cancer treatment eventually ended — and I know how lucky I am for it to have ended — and my loved ones expected me to get on with life. But, instead, despite the psych meds I was on, my mental condition kept deteriorating each year with increased flashbacks, panic, and depression — thanks to having had cancer, the gift that keeps on giving.

The strong, rambunctious part of me was dying, it seemed.

Eventually, hesitatingly, I sought out the help of a kind, brilliant psychiatrist who ultimately figured out the right medication cocktail. I was initially wary of increased dosages and types of psychotropic medications. I was so afraid I’d become addicted to them. And I thought that seeing a psychiatrist and taking psych meds would dull my emotions, as well as label me “crazy.” Like so much of the public, I attached a stigma to those with mental health problems.

But I surrendered to my psychiatrist’s directives. And thus — with medication and psychotherapy — I fought my way back to mental health.

The side effects of the medications include balance issues that are difficult to live with. It’s hard navigating stairs, and I can fall easily. I’m unsteady on my feet. In fact, I can’t walk a straight line (yes, I would flunk a sobriety test). And there’s the weight gain (ugh). I exercise and mostly eat right, but these psych meds make losing weight seem insurmountable.

My internist reminds me, though: “It’s better to have weight gain and be mentally stable as you are than to be off the medication and lose the weight, but compromise your mental health.”

Psychotherapy

For me, medication alone wasn’t enough to quell PTSD. Right when chemo and radiation treatments ended, my relationship with a gifted psychotherapist began and continues to this day. We work on effective ways to cope with panic and depression. With her help, I’ve developed a rather effective toolbox, which includes art, exercise, writing, deep breathing, and being with friends.

But my salvation in eradicating flashbacks for the most part has been a treatment successfully used for war veterans, EMDR (Eye Movement Desensitization and Reprocessing). You can click here to find out more about it, but basically, EMDR is a therapy where a patient recalls a trauma while receiving sensory input, such as watching an object move from side to side. The thought is that eye movements help one re-process trauma and emerge with new insights.

I’m lucky that my psychotherapist is trained in EMDR, and I have responded exceedingly well to this treatment. I’m glad to say I rarely have flashbacks, though I still get triggers and have to be careful what information I’m exposed to.

What is great about this treatment is that there is no additional medication involved. What is not so good is that, unless one is a war veteran, insurance often doesn’t cover it. I paid out of pocket for two EMDR sessions. They weren’t cheap, but they were worth every penny.

After all, one cannot put a price on mental health.

For me, the road toward sound mental health is ever evolving and always enlightening. Nonetheless, I have no illusions: Every day still presents challenges for me. But, while PTSD and panic disorder are here to stay, I am living a quality life nonetheless.

And now that I’ve written this post, I finally am free.

As the American rock band The Eagles say in their song “Already Gone,” “So often times it happens that we live our lives in chains. And we never even know we have the key.”

A special thank you to my friends Sharon Greene for being so honest about her PTSD and Nancy Stordahl for writing her post “That Other ‘F’ Word.” You both gave me the courage to write and publish this post so shortly into the New Year.


Courage, Fire, Tenacity

Posted on: January 16th, 2015 by
8

Many in the blogosphere have shared their two or three words to guide them during this year. I am no exception: so without further ado, here are the three words that will serve as my guides for the upcoming year. I originally thought this post would focus on only one word, but two others popped off my fingers as I was writing this post.

The words, which make up this post’s title, are all intertwined.

Courage. When I was planning this post, courage was the only word on my radar. The year ahead sees me challenging myself in many ways, especially regarding what I reveal on my blog. Pushing oneself to expose one’s inner feelings and workings is not for the feint of heart. Right now, despite all I’ve revealed about myself in this blog, I’m too chicken to publish a post I’ve wanted to for quite some time.

I’m hoping to change that chicken into a jaguar and finally do it.

I cannot falter.

I cannot allow fear to rule me.

I also want to get ready to publish my book. Fear has kept me back, and I will do my best to get my book on navigating the medical system out. In 2014, I was courageous in soliciting agents, and I must continue the momentum to get my book out. Despite their rejections, the agents who responded seemed to genuinely like my work. This has encouraged me. I must believe this book has a place in the world.

Before cancer, I was fearless and goal-driven in many ways. But since cancer worked its way into my life, I’m less sure of myself. I no longer have that fearlessness in going for a goal. The “what-ifs” creep into my mind daily.

This year I will be turning the negative “what-ifs” to positive “what-ifs.”

Fire. I need to rekindle the fire deep within me and go forward with my goals. The embers of inaction have been burning quietly for years, but I’m hoping a dose of courage will ignite the flames.

I will embrace the flames and act in spite of my fear.

I cannot be afraid to go forward.

Tenacity. The other two words relate to the tenacity I’ll need in accomplishing my goals. An act of courage is a one-time act. I need to have long-term endurance and determination for many acts of courage that will outlast my fears.

I must not quit.

2015 is my own call to action.

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Readers, What do you hope for yourself for 2015?

What’s your call to action this year and beyond?


Reflections on Blogging

Posted on: January 9th, 2015 by
23

For years, I’ve aired my dirty breast cancer laundry with the world. I’ve chosen this path — to publicly document my authentic narratives and points of view on this blog — for many reasons: to achieve catharsis by lending my voice to the breast cancer experience, to help others by assuring them they are not alone, to be a part of a community of writers, and to exert some level of balance and control over my life, just to name a few.

Now about that last point. People diagnosed with a serious illness often feel their lives spiraling out of control. When I was diagnosed with breast cancer, I felt the bottom of my world drop. And to make matters worse, my doctors and nurses were running my life by telling me when and where I had to have treatments. It didn’t matter that my radiation appointment conflicted with a work obligation; I had to show up for treatment.

I love my medical professionals for doing all they could to save my life. But nonetheless, going through a life-threatening experience where I had no control and its cancer aftermath left me feeling derailed, voiceless, and unheard.

So I found refuge in blogging and sharing my voice to gain more control. While I can’t determine all that happens to me in life, I can control what I say and don’t say on my blog.

This post addresses what I am and am not willing to say on my blog posts.

My Life’s an Open Book, Sort of

My family believes divulging personal information is taboo. I was always a private person who embraced this philosophy. Then came cancer. And I no longer wanted to be quiet.

As a blogger, I’ve organically departed from my family’s point of view and publicly share my heart and candor about my experiences and feelings. While I write about topics such as motherhood, my main focus is cancer and its repercussions.

I’ve been open about topics such as my time in ICU, my bilateral mastectomy with reconstruction, and cancer’s emotional aftermath, just to name a few. Popular posts include those dealing with divorce after cancer and moving on after divorce. And I’m no stranger to addressing controversial topics or disagreeing with someone’s public stance. I’m also open about my body image issues as a result of all the surgery I’ve endured. I even have a post idea brewing about my belly button!

Stay tuned for that one.

Some people would be embarrassed to share such intimate information, but I feel the need to express what I’ve been through and my sloooow recovery; in doing so, I am able to help others going through similar trials and tribulations. I am able to lend voice to experiences a good number of people share.

I’ve developed a bond with my readers — ironically and unfortunately — through our common suffering and shared pain. I care deeply about my readers. It’s always wonderful to get comments on a post (even the ones from people who disagree with me), but some posts simply don’t attract comments. And that’s okay.

Overall, I’m not afraid to state who I am and what I stand for.

My Life Has Closed Chapters

While I tell my truths, I know when not to reveal parts of my life — past, present, and future. Let’s face it: like everyone, I have skeletons in my closet, but that doesn’t mean I have to spill its bare bones.

I can be authentic and still omit things.

Blogging involves risk vs. benefit decisions. I’m willing to take risks for some topics; others are too risky for me personally. For example, my internal censor won’t allow me to focus on non-cancer-related trauma.

We all have traumatic times, but I believe blogging should be therapeutic, not therapy.

I want my blog to serve as a source of meaningful content, not a dumping ground.

I won’t deliberately write hurtful things about people. That’s not how I roll anyway, but it’s really not a good idea to say something negative about others. Others’ ideas, yes, but not bad mouthing other people. I avoid the topics of politics and religion, although I wrote a rather benign piece on how cancer changed my faith.

Even though I’ve said a lot through my blogs, truth is, they cover only an iota of my life, and that is as it should be.

What’s to come in 2015? There is something I’ve wanted to blog about for a couple of years, but there is risk to that. I think it will resonate with others, but I have to be ready to accept my vulnerability yet again to write about a topic so near to my heart and mind and spirit. I’m not making any promises, but I’m hoping to gather the courage to write about this topic this year.

In the meantime, I will continue to love the writing process. And that is as it should be.

For a related piece on my writing process, click here.

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Are you considering writing that long-awaited post or starting a blog? Feel free to share your thoughts.

If you are already a blogger, why do you write? I would enjoy hearing about your motivation(s) for writing, or even your challenges.


Cancer: The Best Way to Die?

Posted on: January 2nd, 2015 by
22

We have just dipped our toes into the New Year, but someone’s outrageous views on cancer death has already caught the attention of the public.

On December 31, Richard Smith wrote a post for The BMJ blog titled “Dying of Cancer is the Best Death.” And this is Smith’s thesis: that it is far better to die a slow death that cancer affords than from a sudden death. According to Smith, “So death from cancer is the best, … You can say goodbye, reflect on your life, leave last messages, perhaps visit special places for a last time, listen to favourite pieces of music, read loved poems, and prepare, according to your beliefs, to meet your maker or enjoy eternal oblivion.”

What a nice picture of cancer death.

Unfortunately, this short-sighted, oversimplified view omits the truth about dying from cancer: it’s a horrible, frightening, terrible way to die. Cancer is ugly. It doesn’t matter whether patients can say their goodbyes and express to their loved ones how much they love each other. Death from cancer involves suffering unimaginable to people like Smith.

My friend Faun, who died of metastatic breast cancer, got to say her goodbyes in her 40s. At the end of her life, she and I exchanged our “I love yous.”

Although we achieved closure before she died and she got to live out some dreams like getting married and owning a home, I watched her die for four years. It was horrific and involved incredible amounts of suffering — not just for her, but for her loved ones.

And not all terminal patients can live out their dreams, Mr. Smith: Faun had desperately wanted children, but chemotherapy stole her fertility. We shared the same dream of perhaps adopting children. Cancer stole that dream from her. Oh, and she couldn’t visit special places for the last time, unless one counts the hospital. She was so ill, she needed to constantly be near her doctors.

My friend Virginia died of leukemia. She was so ill and suffered for so long, it was unbearable for me and her other loved ones to watch. Like Faun, she was also too ill and too tied to the hospital and her physicians to jet-set and see special places. Prior to cancer, Virginia was a naturalist who was no stranger to adventure. She had lived in Africa for awhile and went to Costa Rica, just to name a few of her excursions. When she got ill, she was still a naturalist, but her travels ended.

She did take up the ukulele towards the end of her life, which Mr. Smith would say that had she had an instant death, she would have never had that opportunity.

Such an illogical, twisted way of thinking, really.

Virginia had many more dreams to fulfill, but in the end, she never got to accomplish them, thanks to cancer. She died, leaving a husband, three grown daughters, and two young grandchildren. Her dream of watching them grow up was not realized.

Smith ends his post with the following delusional, misguided assertion: “This is, I recognise, a romantic view of dying, but it is achievable with love, morphine, and whisky. But stay away from overambitious oncologists, and let’s stop wasting billions trying to cure cancer, potentially leaving us to die a much more horrible death.”

This flippant statement makes me wonder if Smith was on morphine and whisky while he was writing his post.

Surely he believes that love and painkillers are sufficient to alleviating suffering.

Well, he is wrong. My friend’s mom, who had metastatic pancreatic cancer, opted out of treatment; she just wanted to be kept comfortable with morphine and not to suffer from the effects of chemotherapy. She died months after the date of diagnosis. During her last weeks, she became bedridden and, although she was lovingly cared for by my friend and comfortably on morphine, the patient got to the point where she just wanted to die and go to Heaven. A religious woman, she was hopeful that each day would be her last. But whenever she woke up to cruelly discover she was still on Earth in her cancer-riddled body, she suffered.

Smith’s final proposal — that we stay away from oncologists and stop donating funds to cure cancer — is so short-sighted, ridiculous, simple-minded, and erroneous, it’s not worth addressing.

His ignorance of what defines a quality life and a quality death speaks for itself.

Truth is, Mr. Smith, there is no best way to die. And if there were, cancer definitely wouldn’t be it.

To read his entire blog post, click here.

Mr. Smith’s thesis is that cancer is the best way to die. Please feel free to comment on this statement or any other he makes.

Please feel free to share your and/or your loved one’s stories. I would like to hear them.


Gratitude 2015

Posted on: January 1st, 2015 by
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I don’t make New Year’s resolutions; instead, I set goals throughout each year and try my best to follow through. So, rather than make New Year’s resolutions on this first post of the New Year, I am expressing my gratitude.

After all, I have much to be grateful for.

Family. I’m so blessed to have wonderful people in my family. Arielle and I — plus our cats and a goldfish — form a great family and a loving household. Of all the children in the world, the right one for me was placed in my arms on a hot day in China.

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I love her immeasurably. We are not only mother and daughter, but we are friends. I hope she continues to confide in me and come to me with her problems, and that our lines of communication stay open.

Although my family is a distance from me, I’m still close to them. I’m lucky my parents are still alive. We speak on the phone weekly, and I know how lucky I am to hear their voices on the other end and to visit them. I’m fortunate to have an aunt who forged a close relationship with me from the moment I was born. We are close to this day and have Skyped.

My only sibling, my brother, is a rock star. He has been a supportive, rational force throughout my cancer diagnosis and treatment, and he was present for two surgeries. Though I did radiation and chemotherapy alone, he made sure I knew how much he loved me.

I’m blessed to have a sweet sister-in-law, whom I consider a friend. And I’m grateful to have two wonderful nephews, one who is in high school, and the other an adorable two-year-old.

Though my grandparents are deceased, I was fortunate to know them well. They taught me a lot, and I am so glad they were in my life for a long time.

Friends. I have amazing friends — both in-person and online ones. I wasn’t in the online arena when I was diagnosed and treated for breast cancer, but my in-person friends supported me.

NED. I’m so grateful for having no evidence of disease for a good number of years. I do not take this stroke of luck for granted.

Medical team. I have amazing doctors and nurses. I love them all.

Career. Ever since I can remember, I wanted to be a teacher and a writer. When I was 13 to about 18 years old I wanted to be a veterinarian, but truth is, deep down inside, I really wanted to be a writer. I’ve been lucky in college to have an important mentor, my freshman English professor. He nudged me — OK pushed me — to become an English major. Although I initially resisted, I ultimately gave in, and it was the best decision I made.

I now teach English and Humanities at a local university and get to write, too. The best of two great worlds. Through my writing, I am able to connect with others. Teaching gives me the opportunity to help students, and I’m grateful for that. I’ve been able to provide a safe place for students who confide in me about their personal challenges. I’ve helped students in dire circumstances, and I find it amazing — and a blessing — that students feel comfortable enough to confide in me. I enjoy inspiring others to keep learning and to aim for success in all aspects of their lives. I’ve also taught students the value of giving back to the community.

My readers. I’m grateful to you, dear readers. Your reading my posts and your comments mean a lot to me. Happy New Year from Calling the Shots; may your year be filled with joyous moments.

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What are you grateful for?

Would you like to share any New Year’s Resolution(s)/goal(s)?


Virtual Families Face to Face

Posted on: December 27th, 2014 by
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Last Saturday, Arielle and I got to meet a wonderful family: Tami Boehmer, her husband Mike, and their lovely daughter Chrissy. Tami comes to the Chicago area once a month for a clinical trial. We agreed to meet at a restaurant for dinner in Skokie, IL.

I’ve been a fan of Tami’s since I first became acquainted with her blog, and awhile ago, I reviewed her first book, From Incurable to Incredible: Cancer Survivors Who Beat the Odds. She first became acquainted with me after interviewing me on the phone and introducing me on her blog. An instant camaraderie existed between us online. And, one week ago, we met at last.

And our camaraderie was still there.

I had a great conversation with the Boehmer family. I could tell Mike was so supportive of his wife and Chrissy was close to her parents. The family struck me as exceedingly nice, caring, and intelligent.

Tami and Mike have a wonderful, witty, sometimes irreverent sense of humor. I can also be irreverent. So we laughed a lot through dinner. We had a lot in common. We discussed self-advocacy and publishing, among other topics.

Mike has a blog, where he provides a caregiver’s perspective and keeps his readers posted about his family’s adventures. If you can, please check it out.

I am so very grateful I met Tami and her family. This is another example of how wonderful the online breast cancer community is. I never expected to have so many online friends when I hit my blog’s Publish button for the first time. It’s truly incredible.

To purchase Tami’s second book Miracle Survivors: Beating the Odds of Incurable Cancer, click here.

Tami (right) and me

Tami (right) and me

Have you met any bloggers face-to-face?

Feel free to share your comments about the online community for breast cancer or any other disease that you are experiencing/have experienced.


Tips for the Newly Diagnosed

Posted on: December 19th, 2014 by
22

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
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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
16

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