Calling the Shots, the Book, is Here!

Posted on: July 5th, 2016 by
8

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I’m excited to announce that my book, Calling the Shots in Your Medical Care, is now available!

Calling the Shots was intentionally released around the US’s July 4th holiday because the book is all about declaring one’s independence:

* From doctors who do not have a patient’s best interest at heart,
* From unsavory medical personnel, and
* From abusive records departments who do not have a stake in the patient’s health.

The book is deliberately short and easy to read because, let’s face it, when a medical crisis occurs, few people want to read through large tomes that can cause information overload. Patients going through a crisis deserve more.

Calling the Shots is a call to action.

The book encourages patients to speak up, rather than give up.

The book helps patients distinguish between good and poor physicians.

The book encourages patients to stand up for themselves.

After all, if patients don’t advocate for themselves, who will?

For more details on the book, see the “Calling the Shots,” The Book tab and/or read health advocate Martine Ehrenclou’s review here.

To purchase Calling the Shots in Your Medical Care, click here. A Kindle version will be available soon.


Cancer Harbors: A Safe Harbor for Cancer Survivors

Posted on: June 30th, 2016 by
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I rested my head against the window, as the train car’s soothing motion lulled other morning commuters to sleep. I was uneasy: It was my first day back to work after cancer treatment had ended, and I was officially a survivor. While I was lucky to have survived thus far, I hadn’t had a clue about the complexities of living after cancer diagnosis and treatment. So, I just stared out of the window, wondering, “What just happened to me?” and “How do I go on with a ‘normal’ life”?

Resources were readily available to me as a patient, but not as a survivor. I soon learned that the stress of surviving cancer couldn’t be remedied by running for pink ribbons nor any quick fix such as speaking briefly with a cancer counselor. Seeing my doctors for follow-ups just reminded me of being sick and panicked about returning to the places that reminded me of illness.

I wish a great resource such as Cancer Harbors had existed then.

***

Cancer Harbors is a new online service that helps people who’ve had cancer navigate survivorship. According to the organization’s website, the service “provides you with the information and skills to create your personalized plan to restore your well-being after cancer treatment based on your priorities, lifestyle, and preferences. It’s not a cookie-cutter survivorship plan at all. It’s a plan for living life well.”

Founded by Alene Nitzky, a personal trainer and nurse with oncology expertise, Cancer Harbors is designed to help survivors — whether they are just coming out of treatment or have been out of treatment for awhile. Membership includes multiple videoconference sessions with a professional cancer recovery coach, access to monthly survivorship articles, a discussion forum, as well as a quarterly newsletter and exercise videos.

“The program has value and many options,” says Nitzky, emphasizing that this service is especially helpful to those communities with no or limited survivorship support options. “With the video conference feature, people can just drop in and say, ‘I’m having trouble,’” says Nitzky. “[The survivor] is face to face with a professional who has a feel for [the survivor’s] concerns and who is right there to answer questions and offer a variety of tools.”

“I help cancer survivors get to the point where they can reach out and get what they want and need,” says Nitzky.

As a survivor, I stand behind this service. After all, when cancer survivors are feeling derailed, Cancer Harbors helps them get back on track — not only in terms of survivorship, but by helping survivors live life on their own terms.

To find out more about Cancer Harbors, click here and/or e-mail Alene Nitzky at info@cancerharbors.com.

If you are a cancer survivor, how has survivorship been going?

Did you/do you have a survivorship plan in place?


Re-Acquainting Myself With the Breast Self Exam

Posted on: June 16th, 2016 by
7

Once upon a pre-breast cancer time, a physician paid me a high compliment. “You do better breast exams than most doctors,” he said. And I think he was right. Every month I performed the same ritual: a thorough breast self-exam, including the look-at-your-breasts-in-the-mirror test.

Although I always dreaded the idea of something possibly being wrong, I examined my breasts thoroughly and regularly.

Until a breast self exam (BSE) saved my life.

***
After I found an odd, but ever-so-subtle dimple during an anything-but-routine BSE, I made the dreaded appointment with my gynecologist, who ordered a diagnostic mammogram, which showed an abnormal mass.

The rest is history. Breast cancer. Two lumpectomies. Chemotherapy. Radiation. Aromatase Inhibitors. Constant monitoring. False scares. A mass found via MRI in the same breast five years after diagnosis. Scared shitless. Another lumpectomy to remove the mass. Benign this time. Fought for a bilateral mastectomy with DIEP flap reconstruction. Done. And done. My “healthy” left breast loaded with pre-cancerous cells.

Turns out, the bilateral mastectomy saved my life.

I’ve been a medical success story thus far, and I am grateful. Before and after surgery, my mastectomy surgeon emphasized the importance of continuing to do BSEs, as it’s impossible to remove all breast tissue during the mastectomy.

And now I have a confession to make. You can probably guess what it is.

I haven’t done a BSE since my bilateral mastectomy and reconstruction.

I’m too afraid of finding something.

Thick fear suffocating me.

I’ve let my fingers do the walking way too much for my taste. So I’ve let my doctors’ fingers do the walking instead.

But I realize that my dependence on my doctors’ breast exams must be over. I need to once again take ownership of my health in this arena.

So, here I am, a BSE newbie again, learning the unfamiliar terrain of breasts that are mine-yet-aren’t-mine.

My first post-mastectomy BSE is just around the corner. A corner I must unwillingly turn.

Doing a BSE will be emotional. I weep just thinking about it.

But being proactive is my only choice.

I must go forward.

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Do you do/Have you done breast self exams?

How was your breast cancer discovered?


Boycotting National Cancer Survivor’s Day

Posted on: June 2nd, 2016 by
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National Cancer Survivors Day is on Sunday, June 5.

And I won’t be celebrating.

Sorry to sound like a bitter ingrate, but I take issue with a day that celebrates cancer “survivors” and leaves those with metastatic cancer in the dust of victory.

In fact, I take issue with the word, “survivor.” According to Dictionary.com, the word “survive” means: “to endure or live through (an affliction, adversity, misery, etc.)” and “to get along or remain healthy, happy, and unaffected in spite of some occurrence.”

Does this definition fit those with metastatic cancer? Most certainly not. For those with mets, cancer is more than just an adversity to be overcome. And, let’s face it, people with this disease don’t necessarily remain “healthy, happy, and unaffected.”

The National Cancer Survivors Day website has a page called “Who is a Cancer Survivor?” It lists several criteria that “defines” who makes the cut as a survivor. Here’s one gem from the website:

“If you’re living with cancer as a chronic disease – you’re a survivor.”

WTF?

Maybe I missed something here, but since when is metastatic cancer a chronic disease? Such deceptive, veiled language pretties up the ugliness that is cancer. Here’s another definition of “survivor”: “If you’re currently in active treatment for cancer – you’re a survivor.” I think the people who put the website together just threw this in in a feeble attempt to cover those with metastatic disease.

And here’s my favorite: “If you’ve beaten cancer and been declared cancer-free – you’re a survivor.” Ah, the old tried-and-true favorite: the battle metaphor stating that if one is NED, they have won the battle against cancer. Nobody I know has “beaten” cancer, yet the battle metaphor lives on.

Let’s be real: These feeble definitions of cancer survivorship also don’t fit for those people who lived through cancer and are currently NED (no evidence of disease), the so-called “survivors,” people for whom the national celebration is really aimed at.

People like me.

***

I’m under the survivorship umbrella, but it’s a raging shit storm out there.

Don’t get me wrong: I’m glad I am NED, but the jury is still out on whether I survived cancer according to the aforementioned National Cancer Survivors Day criteria. Regarding cancer survivorship, a hip hip hooray feeling eludes me. The bridge toward survivorship and greener pastures is rickety.

Here’s a synopsis of my post-cancer life. Most of the time, I live in a state of gratitude. I paint and write and read. And take nature walks, appreciating all that nature has to offer.

But while I’m grateful to be alive, I’m not grateful I had cancer.

I will never be grateful to have had cancer.

Cancer is ugly and devastating. To me, survivorship is akin to living under the Sword of Damocles. It’s like being placed in Edgar Allen Poe’s story of terror “The Pit and the Pendulum,” where the narrator finds himself facing a pit where he will fall into a never ending abyss, as the walls literally close in on him bringing him closer and closer to the pit.

I can only speak from my own experience.

Survivorship has been exceedingly difficult for me. Between the panic caused by oncology appointments and intense scanxiety that only those in the cancer world can understand to PTSD to fatigue to chemobrain to cancer paranoia — survivorship pretty much sucks.

Yet, despite all this, I know how lucky I am to have survived. I don’t need National Cancer Survivors Day to remind me that I’ve beaten cancer.

Truth is, cancer has beaten me up pretty badly.

Path

Do you like the word “survivor”? If so, do you consider yourself a cancer survivor?

If so, how has your survivorship experience been?


Breast Cancer Is No Slam Dunk

Posted on: May 26th, 2016 by
10

I recently met with advisors regarding financial planning, something so many ordinary people ordinarily do. These gentlemen seemed to care about me, as they assessed my current financial status and my future financial plans.

But, of course, there’s a sales pitch.

There always is.

They recommended I purchase excellent, fantastic, stupendous life insurance. Although I have life insurance at my place of employment, these advisors suggested I obtain additional life insurance. After they rattled off all the different life insurance companies they work with — and after my brain stopped spinning — I asked the question my inquiring mind wanted to know: How expensive is additional life insurance?

“Well…um…that depends,” said one advisor.

The other chimed in, “Well, you are relatively healthy, so it would be reasonably priced for you. It’s only more costly if you’ve had a history of diabetes, cancer, heart problems, and so on. You’re not a smoker, are you?”

“No,” I said, as my mind had stopped at the word “cancer.”

“Good,” they both chimed in in unison, figuring that selling me life insurance was a slam dunk.

“But I’ve had cancer,” I said.

They were taken aback and looked shocked. I could feel what they were thinking: how could someone who looked healthy and younger than my age have ever had cancer? (Come to think of it, what does a person who has had cancer look like?)

Then our conversation took a turn for the worse, as they regrouped and launched into their sales pitch again.

“Can I ask what kind of cancer you had?” said one advisor.

“Yes, breast cancer.”

They both smiled with relief. “Well,” said the other advisor, “Insurance companies look at the type of cancer you’ve had when making their determination, and I can tell you that breast cancer is generally not a problem.”

“But you don’t know the nature of breast –,” I replied, as they cut me off.

“It’s no matter. If you’ve had breast cancer and a doctor’s note saying everything is now fine, most life insurance companies will be fine with this. How long ago did you have breast cancer?”

“Fifteen years ago.”

“Fifteen years?” they both said, beaming. “Well, if you’ve had breast cancer 15 years ago, you should have no problem getting life insurance. If it was a year or two ago, you’d encounter more difficulties.”

All I could think of at that moment was Jody Schoger, who was supposedly NED (no evidence of disease) for 15 years and who recently died of metastatic breast cancer.

My thoughts were interrupted by the two men who joyously believed they had a sale. And worse yet, these individuals believed that breast cancer was the “good” cancer and that having been diagnosed and treated 15 years before for breast cancer was no big deal. At all.

They had a cavalier attitude toward the source of my and others’ suffering. They believed that having had breast cancer 15 years ago was a slam dunk in the life insurance world. Heck, a slam dunk in life in general.

Slam Dunk

To that, I call bullshit. Bullshit. Bullshit. Bullshit. Bullshit.

This dismissive, insensitive attitude is pervasive in our culture: breast cancer is the good cancer.

Bullshit.

Breast cancer is the sissy cancer.

Bullshit.

Once a person has passed the five-year mark, it’s all systems go.

Bullshit.

Like I fire doctors whom I deem harmful to my emotional and/or physical health, I fired these advisors. I thanked them for their time and left, with no intention of ever coming back.

I’ve had enough with financial advisors. Instead, I just bought a book on financial planning. After all, I’d rather turn pages than turn into an idea of what a breast cancer survivor should be.

Have you encountered that attitude that breast cancer is the good, easy cancer?

If you have done financial and/or retirement planning, have health issues come up and, if so, how was it handled?


Jody Schoger and Gratitude

Posted on: May 20th, 2016 by
14

This has been a sorrowful week in the world. We lost so many to metastatic breast cancer (MBC), including Jody Schoger. Even though I knew she was in hospice, I was still stunned when I received the news that she passed away. And in that finding-out moment, I knew the world was suddenly worse off for not having Jody’s fierce passion, intelligence, kindness, and advocacy in it.

I never met Jody in person, but like so many in our wonderful online community, I felt as if I knew her. One of the #BCSM tweetchat co-founders and a moderator of the tweetchat, she exuded kindness and caring for all participants. A few years ago, I had a medical scare. I was seeing my oncologist, who confirmed I didn’t have a breast cancer recurrence, as the menacing bone scan report indicated. When I checked in during our #BCSM tweetchat, the first thing Jody did was ask me how the oncology appointment went.

I embraced that act of kindness deep within my heart and will always treasure it.

Frankly, writing this post is so difficult, as words cannot capture the anguish and ache I’m feeling right now. I know I’m not alone in this raw mourning — so much of the world is grieving with me for loved ones lost to MBC. I cannot capture the depth of sorrow and how I feel kick-punched by pain. So I don’t talk about this to friends. That’s how stopped up my voice feels.

Is it possible to love someone you never met?

Yes.

I’m having a difficult time coping — and breathing — at this very moment.

So right now, as I write this post, I’m about to spiral down into the bottomless abyss of despair.

To keep from doing that — after all, depression is not helpful for me — I am reflecting on what I’m grateful for. I must turn to appreciate what I daily take for granted. No, this is not a post on thinking positively or to bury our heads in the sands of denial. Instead, writing what I’m grateful for will keep me (and maybe others) from completely sinking into the quicksand of anguish.

Here are just a few things I’m grateful for:

The blooming bush in my front yard that I’m sometimes too busy to notice. It has glorious white flowers right now.
Flowers
The longer days of spring and summer.

The fact that my daughter challenges me on everything these days. It means she’s growing up and is learning about boundaries.

The purring of my cats.

The ability to write and create art.

The ability to go to the bathroom independently, something not everyone has.

Being able to teach and touch students’ lives.

Music.

Books.

Great doctors, although they scare the shit out of me.

The online breast cancer community.

More cowbell, always more cowbell.

What are you grateful for? Can you add to this list?

Do you have any fond memories of Jody Schoger? Feel free to share them.


Cancer Was Not a Gift & It Didn’t Make Me a Better Person: A Review

Posted on: May 13th, 2016 by
7

Nancy Memoir

Truth.

That’s what you will find in Nancy Stordahl’s memoir Cancer Was Not a Gift & It Didn’t Make Me a Better Person: A Memoir About Cancer as I Know It. The book’s title is telling: Stordahl exposes the ugliness that breast cancer really is. In a culture of pinkwashing and stories about how breast cancer changed people for the better, it is refreshing to read this book’s account of breast cancer.

Stordahl knows first-hand about breast cancer, unfortunately. Her mother died of metastatic breast cancer, and not too long after her mother’s death, Stordahl herself was diagnosed with breast cancer. I don’t want to divulge too much about this important book, but Stordahl interweaves her breast cancer story with her mother’s breast cancer story exceedingly well. She also covers the complexity of how breast cancer has affected her family, as well as how horrific this disease really is.

The memoir’s narrative prose is so extraordinary, that I could not stop reading this book. The memoir is not the typical breast cancer feel-good-book; instead it is a poignant account of the tragedy that is breast cancer.

If you are a fan of her popular, excellent blog Nancy’s Point — as I am — you will appreciate the memoir’s same candor and heart as Stordahl’s blog. A well-known advocate for those with metastatic breast cancer, she has no qualms about sharing any topic on breast cancer.

Stordahl is a refreshing agent for change in breast cancer culture.

Similarly, her memoir is the antidote to the pink ribbon culture so pervasive in our society.

I highly recommend this memoir. It can be purchased here.

Have you read Nancy Stordahl’s memoir yet? Feel free to leave your comments.


Dancing Alone on Mother’s Day

Posted on: May 7th, 2016 by
2

For many in the US, Mother’s Day is a time of celebration. People may reflect on how lucky their lives are to have wonderful mothers and/or children. For others, this holiday is quite somber: too many people have lost their mothers or are even estranged from them.

This holiday’s cup runneth over with emotion.

Last Mother’s Day was fun for me and filled with celebration. However, this year, Mother’s Day is bittersweet. Arielle and I will do fun things, but I cannot rest easy.

My mom is grieving, spending the holiday without her husband at home for the first time since they became parents.

***

As you know, my dad has dementia and Parkinson’s and is at a facility that specializes in dementia.

Rewind to before I was born: My parents were a pair of great ballroom dancers. They won numerous awards, but, most importantly, they loved to dance. Even as I was growing up, once a week, they asked one of my grandmothers to babysit — and then they hit the town by ballroom dancing.

They danced at least once a week, and my brother and I knew, as we grew up, that dancing was their love. It’s no wonder, then, that they supported my tap dancing lessons for quite a number of years. At my wedding reception, my dad led guests in dancing the hora. In fact, my parents loved all kinds of dancing, although their favorite was always ballroom dancing.

When they retired and moved to Florida, they found a ballroom dancing community and went dancing two to three times a week. Even during my dad’s dementia, the one thing he could still do was dance. Even as his memory was failing, his muscle memory was still strong.

They danced and danced. Until the day he fell out of bed and broke his hip. Now my broken-hearted mom visits the nursing facility to see the man who was her dance partner for life.

Now she is alone.

It is unbearable for me to witness her grief. I try to help her through it. And I and my brother are grieving, too. We’re losing a father, slowly. And we’re understandably upset that my mom is grieving the decline and eventual loss of her husband.

And I’m saddened that my mom no longer has her life partner, as the dementia has fully taken over. And now, with his inability to walk, she no longer has her dancing partner.

“Your dancing days are over,” says my mom’s mean-spirited friend.

My mom calls me and cries over this comment. I keep trying to talk her out of this dysfunctional friendship, but my mom continues to reach out to a woman who does not have her best interest at heart.

And yet, despite all the trauma that my mom is going through, she was kind enough to send me flowers for Mother’s Day.

Speaking of flowers, my mom is a great gardener. My dad was never into gardening, so this has always been a solo hobby. She takes great pride and joy in her garden, which yields unbelievable flowers, so I encourage her to throw herself into gardening. It’s great therapy, as my mom won’t go to support groups.

So Arielle and I will celebrate Mother’s Day, as always. She will have fun, and I will enjoy the moments we have together. But I will call my mom and think regularly about my parents. They live a long way from me, but the distance between our hearts is short.

Flowers

Have you experienced the loss of a parent? If so, how do you handle Mother’s Day and/or Father’s day?

What are your Mother’s Day plans? Feel free to share a memorable Mother’s Day.


Book Launches a Heart-to-Heart Talk

Posted on: April 22nd, 2016 by
12

Calling the Shots in Your Medical Care is about to launch in just a couple of months. And, with the excitement building, I feel a sense of purpose and urgency and certainty that this is the right time for the book to make its debut.

But I haven’t been so sure this is the right time to tell Arielle that mommy had breast cancer.

As many of you know, some time ago, my daughter accidentally found my prosthesis, as it flopped out of my bra. We had an age-appropriate talk, and I was hoping that would be that for a while.

Well a while has come and gone. She’s almost eight years old now, and the doctor-fixing-boo-boo language no longer flies.

A close friend tells me, “You’re going to have to tell her, you know, especially with your book coming out. Do you want her to find out by reading about it in your book? Don’t let her find out this way. It should be you who tells her.”

“Not yet,” I say. “She can’t read that well yet. And she’s not ready.” (Read: I’m not ready.)

“When will she be ready?”

“Maybe when she’s a teenager?”

***

Every once in awhile, I catch my daughter eyeing my scars and human-created nipples in a more sophisticated way than before. She gently traces the scars with her fingers. Because I don’t want Arielle to have body-image issues, I act like I’m just fine with my body and that my breasts are the most natural things in the world.

Except they are not.

***

Arielle is happy about the upcoming book launch. She is so thrilled the picture on the book’s back cover will be of both of us. She expects to attend the launch party, and at least one reading and book signing.

“I want to be there [at the launch party] for you, mommy,” says my sweet child, “just as you’re always here for me.”

At this time, I’m looking for a venue to host the book launch party. The prospect of the party makes Arielle especially happy. She can’t wait to be involved. And that’s the problem – she wants to be involved.

She’s more involved than she knows.

***

Kids are smart. They know there’s more to a story, even if you tell them only a portion of that story. On her own, Ari has figured out that something more significant, more serious had happened to her mom. We just don’t talk about it. And that’s been fine with me.

We are open about her adoption story.

We are not open about my cancer story.

Ari is a sensitive, caring child and, being adopted, she has already lost a biological mother. I don’t want to alarm her that she might lose me, too.

I know I have to spill the beans before the book launch. She will hear too much there. And it would break my heart to leave her home with a babysitter on such a significant day. I don’t know what to do.

***

One day when I’m not paying attention, Ari looks through the completed manuscript I accidentally left on my desk.

She accurately reads “Can-cer” out loud.

***

“Honey, do you know what cancer is?”

She shrugs.

“It’s a disease that makes someone very sick. [Deep breath] Years ago, before you were born, I had breast cancer, and I was very sick. But my doctor gave me a medicine called chemotherapy to get rid of the cancer.”

“How did they give you chemo…therapy?”

“Through a needle. In this arm.”

“A doctor took my breasts off and used my belly fat to create new breasts. That is why I have such a big scar under my stomach. Baby, I’m OK now.”

“I’m not a baby, mom.”

***

A few days later, we are talking about why mommy wrote the book. Ari is pensive: “Like the time you had breast cancer, you needed help,” she says. ”And now your book will help other people.”

Wise beyond her years.

We hug.

***

And now that the book launch is right around the corner, I feel better that Ari and I had this conversation. I am honest in my book, so I must be honest with my own daughter.

We must be open about her adoption story.

We must be open about my cancer story.

Still, I cannot rest easy.

What happens when she discovers that breast cancer kills?

What happens when she discovers how scared I was and still am?

What happens when she learns the truth that a doctor didn’t actually fix me?

Will she hold these gentle lies against me? After all, isn’t withholding information a lie?

As she discovers more about breast cancer, we will walk on unknown terrain. But at least the road we are heading on will be paved in truth.

Arielle on Path

How did you tell your children you had cancer?

Have you kept your cancer a secret from your children or anyone else? Why or why not?

Do you have any advice for me, as I know I will have to give her more details in the future?


Something Exciting

Posted on: April 15th, 2016 by
10

I’m pleased to announce that my book, Calling the Shots in Your Medical Care, will be launching in July 2016. This book focuses on helping others realize they have a voice in their own medical care. While I use my own breast cancer experiences as examples, this primer is geared toward anyone facing any kind of medical crisis.

However, a couple of disclaimers:

• The book is not a substitute for seeking out medical expertise.

• The book does not promise that if one advocates for his/her own healthcare needs, that he/she can change medical outcomes.

However, what Calling the Shots in Your Medical Care does is to encourage patients to be proactive in their own healthcare.

Too many patients are meek and passive, viewing doctors as uncontested authorities. Patients don’t always know how much power they really do have. Until they speak up, that is.

Calling the Shots helps readers:

 assert their needs to and command respect from medical personnel, such as doctors, nurses, and medical assistants.
 know how to find the right physicians.
 find out how to hire and fire doctors.
 effectively talk to physicians.
 deal with difficult doctors, such as Dr. Bully MD.
 build a great medical team.
 deal with difficult administrators and the bureaucracy of records departments.

Calling the Shots is a call to action.

Why launch in July?

I got the idea to launch during this month from the US Independence Day holiday. After all, the book is a declaration of independence of a sort – patients can be civilly disobedient to medical systems and personnel who do not have the patients’ best interest at heart.

I will keep you posted as the book launch gets closer. In the meantime, I’m working hard and am embracing the fact that exciting and unexpected things are bound to happen.

This is an exciting time.

I’m ready.