Cancer Myths

Posted on: May 1st, 2009 by
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“You’re Fired!”

Posted on: May 1st, 2009 by
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In a previous blog, I mentioned that I would share my know-how of hiring and firing doctors. Long before “the Donald” made “You’re Fired!” the catch-phrase of the millenium, hiring and firing people was and is a part of doing business.

But despite all the sweet business deals to be had, there’s no business more important than the hiring and firing of doctors. Your health — and possibly your life — depends on it.

Let’s discuss the easiest part first: hiring doctors. You love a doctor and decide to use him or her. It’s as simple as that. During your litmus tests of finding a gateway doctor or a specialist, you know this doctor is for you.

In more specialized circumstances — like after you have met with a bunch of loser-doctors — you can reveal during your interview that you are looking for that special doctor. For example, during the final planning of my mastectomy, I had the reconstruction surgeons lined up, but I needed a mastectomy surgeon.

The first thing I said to her was this: “I’ve got all my doctors in place — except one. I need someone to do the mastectomy. I’m hoping you are the missing link.” She laughed and said she hoped she was, too, and it turned out that she was a breast cancer survivor who had a single mastectomy and was sweet and kind and very empathetic.

I hired her on the spot.

(I didn’t go into all the details about how the other two surgeons wanted to remove my ovaries and uterus and breasts. I also didn’t tell her that, in my frustration with one of the organ grinders, I had the nerve to tell him that he might as well give me a sex-change operation, and alarmingly, the doctor just glared at me instead of laughing like his assistant.)

Now for the difficult part: how does one fire a doctor?

I wish I could tell you that I yelled at a doctor and pointed at him, saying “You’re Fired!” as I stormed out of the office, but that would be false.

Truth is, it’s always been really difficult and painful for me before, during, and after cancer to keep from crumbling under the authority of a doctor. In my previous blog, Say “No” to Thugs, I discuss how some doctors abuse their authority to bully their patients into compliance.

Here are the different ways I fired doctors (highlighted in red), and every case involved heartache and an embarrassing discovery that my mascara wasn’t waterproof. You will notice that, except for a couple of times, “firing” meant simply walking away from these doctors.

**The surgeon who was so great to me during diagnosis and prognosis, but years later claimed it was unethical to do a preventive mastectomy: I flat-out told him he was wrong and that my gut instinct was right. He sneered at me, and I told him I was using another doctor.

**The gynecologist who lied to me when I was in my first trimester by telling me there was a 99.5% chance I’d carry this baby to term because he wanted to see me happy. I complained about him to his colleagues and never came back after my post-miscarriage D&C.

**The gynecologist who scolded me for my medical decision not to follow his advice. I left the office crying, but I never came back.

**The second-opinion oncologist who told me that if I didn’t submit to his treatment, I’d be dead in a year — causing me to leave yet another doctor’s office crying. I called the first oncologist I saw, and he calmed me down and told me that I had no reason to believe that death was around the corner. I called the second-opinion guy and told him I would not take his advice and I was seeing another doctor.

These are just some of the doctors I fired, but they provide a very simple truth: we all have the capacity to advocate for ourselves and that firing doctors need not be dramatic — and that sometimes the most courageous acts involve quietly walking away.

Beth L. Gainer is a professional writer and has published an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She teaches writing and literature at Robert Morris University in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

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This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

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Posted on: April 29th, 2009 by
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Beth L. Gainer is a professional writer and has published an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She teaches writing and literature at Robert Morris College in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com. She also blogs on the adventures of her cats, Hemi and Cosette, at http://www.catterchatter.blogspot.com/.


Say ‘No’ to Thugs

Posted on: April 26th, 2009 by
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We are able to say “no” to our children, teenagers, relatives, friends, and significant others. So why is it so difficult to say “no” to doctors?

Society is groomed to say “yes” to authority figures – particularly doctors. Maybe it’s because we are inundated with TV shows and all kinds of medi-dramas that place doctors smack in the middle of a medical pedestal. From TV’s Marcus Welby to Emergency to Trapper John MD to ER to Grey’s Anatomy, it’s all the same rhetoric: a doctor’s word is good as gold.

I’ve built a team of excellent doctors, all of whom I trust with my life. But I couldn’t get to this point without making hard decisions about which doctors to hire and fire. (In a future blog, I will discuss how to hire and fire doctors.)

Not questioning doctors can result in all sorts of problems for the patient. At its very worst, though, not questioning doctors can land you a spot at the county coroner’s — and not an adventuresome one like that depicted in Quincy.

And if you find yourself facing a combative doctor who is trying to bully you into compliance, use a very effective technique: civil disobedience.

In short, say “no” to thugs.

Here are just some of the doctor thugs I said “no” to:

  • At the time of my diagnosis, I sought a second oncologist’s opinion. He chose a treatment protocol that I later learned would likely have caused long-term damage to my heart. I also asked him about harvesting my eggs because, despite my dire terror, I was hoping to have a baby after cancer. He said, “You might want to think about how fair it is to bring a child into this world, only leave it an orphan.” I left that appointment sobbing. I said “no” to him and “yes” to the first oncologist I had seen. And each day I am grateful for that decision.
  • When I was planning my preventive double mastectomy, a surgeon also recommended other organs get removed as a prevention. Based on the judgment of my excellent gateway doctor and excellent oncologist, I said “no.” He proceeded to bully me by interrogating me on the phone as to why I was not removing these organs, and I infuriated him (not purposefully) when I said that I was following the advice of my other doctors instead of his advice.
  • Dr. Remove-All-Your-Organs finally got over his anger with me and, in an act of good will, offered my mastectomy surgeon his assistance in the removal of my breast tissue. She called me to ask what I’d prefer: her alone or the two of them working together. I told her that I didn’t want that man to ever touch me and didn’t want him anywhere near me on that day. In fact, he’d better not even be in the operating room! (I would’ve liked to say, he’d better not even be in the same hospital as me on that day, but that would be pushing my luck.)
  • Another doctor I consulted who wanted to remove some organs during the mastectomy (yes, there was another organ-fixated doctor) started interrogating me after the surgery as to why I didn’t follow his advice. I was stifled at that point, but once I got my bearings, I fired him.

This is not to say that we should barrel into a doctor’s office, treat them with disrespect, or be deliberately contrary. Doctors are often right about our medical needs.

However, we should never forfeit our rights to be key players in our own health care. And if you encounter arrogant bully-doctors, just employ civil disobedience: Say “no” to thugs.

Beth L. Gainer is a professional writer and has published an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She teaches writing and literature at Robert Morris College in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com. She also blogs on the adventures of her cats, Hemi and Cosette, at http://www.catterchatter.blogspot.com/.

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This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

Top 10 Reasons to Run Away From a Doctor

Posted on: April 19th, 2009 by
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Clearly, there are doctors who should not perform the science and art of medicine. And medicine is a science and an art because doctors need to balance information from research and their fields of expertise and the art of applying this knowledge to help their patients.

Recently I wrote about Five Quick Tips for Choosing a Doctor. Now here are my Top 10 quick reasons to run away from doctors. I have experienced all of these scenarios, some multiple times. Here, then, are my Top 10 signs that you need to put on your running shoes:

1. Citing one dizzying statistic after another, trying to impress you and make you feel stupid.

2. Having a cheat sheet from the Internet and reading from that sheet during an appointment.

3. Bringing up the removal of organs that are not up for discussion….or removal.

4. Telling you that if you don’t choose his/her treatment, that mortal harm will come to you. He/she tries to frighten you into submission.

5. Maligning his/her colleagues and taking offense if you want a colleague’s opinion.

6. Blaming you for not following his/her advice.

7. Interrogating you for why you didn’t follow his/her advice.

8. Trying to decide your medical destiny rather than act as your advisor when you are choosing your own medical destiny.

9. Playing God by predicting what will happen to you. The truth is, nobody knows the outcomes for sure.

10. Pressuring you to make decisions too quickly for your comfort.

Beth L. Gainer is a professional writer and has published an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She teaches writing and literature at Robert Morris College in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

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This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

Top Five Quick Tips on Choosing Doctors

Posted on: April 17th, 2009 by
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In a previous blog, I covered Litmus tests for how to assess whether a doctor is right for you. Here, in a nutshell, are the top five things to keep in mind when considering a doctor — from gateway doctor (primary care physician/internist/family doctor) to specialist:

1. Bring a notebook to your first appointment with questions written in advance. Leave ample space under each question for you to write notes.

2. See if the doctor answers your questions to your satisfaction and thoroughly — in a way you can understand it.

3. Observe the doctor’s body language. See if the doctor maintains excellent eye contact, and when you bring up your concern, whether he/she seems in a rush or simply sits down and talks with you. In addition, see if the doctor is distant from you emotionally and physically. If the doctor is comfortable being physically close to you while answering questions, that’s a good sign.

4. Give the doctor an emotional prompt on a topic that really concerns you, such as: “I’m really worried about my cholesterol levels.” If the doctor is empathetic and great at putting you at ease, that’s a great sign.

5. Call the doctor back the day after your appointment to bring up another real concern. If he or she calls you back promptly and reassures you/answers your questions, that’s a sign that the doctor is vested in your emotional and physical well-being and respects you.

These methods aren’t foolproof, but they really are crucial in your quest to find the doctor who’s right for you.
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This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

A Train Car Named Quagmire

Posted on: April 15th, 2009 by
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In a previous blog, I mentioned an instance where I aired my dirty medical laundry on a train car to get what I wanted and needed from the administrative side of the medical system.

This is that episode.

The drama unfolded with me as lead actor, director, and writer of my medical destiny — oh, and a train car packed with complete strangers who had no idea that their ticket purchases to downtown Chicago included entertainment. Well, that day, they got a lot of bang for their buck.

The situation: I had an appointment with a mastectomy surgeon the next day. Her office had squeezed me in quickly, as my surgery date would be in two months. I had just found out about the appointment that very morning. Understandably, her office needed my medical records faxed from another doctor’s office ASAP.

It took a 45-minute phone fight, with me as victor, and, as it turns out, a crowd of strangers cheering for me.

When it comes to advocating for yourself, you must be willing to shamelessly share your situation within earshot of strangers. This is because medical staff and each of us have limited availability, and, well, you sometimes have to snatch that narrow window of time you have to make that call.

Even if you are in a bathroom stall. Even if you are on a train car.

Here’s how my drama unfolded that very eventful day:

Needing my records faxed and knowing I’d be unavailable the entire afternoon, I make the call while on the train. The prissy record gatekeeper is refusing to fax my records to my surgeon’s office. By the time I make the call, I am pissed off, tired, and my frustration has turned to steely determination.

MissyPrissy says it normally takes a week or two to transfer medical records, and I’m, like, “huh?” Then she scolds me for asking for the office to fax the records the day before the appointment and says that I should know better. I calmly explain that this mastectomy surgeon’s office fit me in at the last minute because of the urgency of my medical situation and that’s why I need the records delivered on such short notice. I just found out this morning I am seeing her tomorrow.

To my dismay, she counters that there are protocols to follow and that the office can’t just fax records willy nilly whenever a patient asks for them. I remind her that the surgeon is the one who wants to see me immediately and wants my medical records before my appointment. The administrator says her office’s policy is strict, and if they make an exception for me, then they are going to have to make it for every patient. So sorry, but no tumbling dice.

I say, “OK” and end the conversation. I cry quietly — after all, it’s OK for the whole train car to know my breasts are coming off, but I don’t want anyone seeing me cry. (Yes, I’m train car-decorum- challenged.) I feel defeated.

Then I think of that famous and my favorite poem “Don’t Quit,” and I recalled a line: “Rest if you must, but don’t you quit.” I had the wind knocked out of me. That was my rest.

I would not quit.

I call the office again. The Records Nazi recognizes my voice and is amazed that I have the audacity to come back for more abuse. As she starts telling me her office’s decision is final, I interrupt her with a blitzkrieg of my own: “I don’t want to speak with you anymore. Give me your office manager.”

Shocked at my irreverence, she complies.

When the office manager gets on the phone, she tells me she cannot go against the office protocol regarding sending records to a doctor’s office.

Suddenly, I take a different approach: emotional manipulation — and this is the turning point that gives me the upper hand in getting what I want and need.

Although my chemobrain cannot retain information well, I do remember our dialogue verbatim:

Me (seeming to change the subject): “Do you know I’m adopting a baby girl from China?”
She (disarmed): “Awww, how sweet!”
Me: “Well, how would you feel if she no longer had her mommy?”
She: “That would be terrible!”
Me (not wasting a minute): “Well, that will happen if I don’t get my surgery. Your office’s refusal to deliver my medical records today may delay my surgery and ultimately harm me. How would you like to tell my daughter that she no longer has a mommy?”
She (emotional): “Please don’t talk that way! We don’t want your child to be motherless. Let me see what I can do to get your records to the surgeon’s office.”

I thank her and literally two minutes later — no I really mean literally two minutes — the Records Nazi humbly calls me back and says the records have just been faxed to the surgeon’s office. My surgeon’s office calls me a few minutes later to confirm this.

I am exiting the train in shock at my own power to advocate for myself — and in shock that I’m able to stand on trembling legs and that I am evoking smiles and congratulations from so many people in the car. Then a gentleman who was sitting far from me on this journey approaches me. He says, “Ma’am, I hope you don’t mind, but I overheard your entire conversation, and all I can say is, ‘Good for you!'”

That’s when I realize how loud I must’ve been. I thank him and apologize for being so loud.

He says, “It was great hearing you not taking nonsense from those people. Your health is the most important thing in the world, and it’s about time someone put these medical people in their place! Good luck with your surgery; my thoughts are with you.”

At this point, I’m reeling. I am happy to have such a fan base, but then I wince as I remember saying the words “double mastectomy” and “breast cancer” so often during my conversations on the train. Everyone on my car had heard the sordid details.

As I leave the train, I see a Breast Cancer Awareness Month ad on the wall of the vestibule. I remember it is October. And on that train car, in front of a group of strangers, it turns out that my face was the face of breast cancer. But it was also the face of self-advocacy.

And as I walk on shaky legs, but not on shaky ground anymore, I think that perhaps I became someone’s role model and hero that day. And I realize I have become my own hero that day, as well.

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This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

The Gateway Doctor

Posted on: April 9th, 2009 by
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My grandmother always told me, “If you have your health, you have everything.” As a child, I didn’t understand the truth in these words. I didn’t heed these words as a healthy young adult: I came from very genetically healthy stock — people in my family die of old age for goodness sakes, even the ones exposed to asbestos, lead, and various other toxins!

I didn’t heed my grandma’s words until I was diagnosed with breast cancer. Because let’s face it: I, as so many people, took my health for granted — until I didn’t have it.

Now I’m going to spin my grandma’s words to suit my medical-advocacy purpose: “If you have a great gateway doctor, you have everything.”

Besides you, the most important person managing your health care is the “gateway doctor,” also known as the primary care physician, internist, general family doctor, etc. Whether or not you are healthy, whether or not your family has had the same physician they have felt comfortable with for decades, whether or not your doctor is well-versed in all of the new medical technologies, whether or not your doctor has had an established practice with a good reputation, it all boils down to this:

Do you trust your family doctor with your life?

If the answer is anything but a resounding, enthusiastic “YES!,” find another doctor immediately. Your life is too precious to take a chance with incompetence and mediocrity.

I measure competent doctors by their medical and emotional know-how. They must be medically competent (sounds like I’m stating the obvious, but it needs to be stated) and they must have your best interest at heart. The latter point means more than just bedside manner: I have had doctors be pleasant to me during an examination, but mere pleasantries are not enough.

You must LOVE your doctor.

As is the case with specialists, the ideal gateway doctor cares about you as a patient and will work as hard as possible to advocate for you. Another perk is that a great family-practice physician tends to keep company with other excellent doctors — and that opens the gateway to outstanding medical care.

I was lucky to have an outstanding gateway doctor in place before I got diagnosed with breast cancer. She was my physician for years because we had great patient-doctor chemistry.

Let me tell you what she did for me during my breast cancer journey:

She called me often, coaching me through the diagnosis and prognosis. She listened to me, and validated my concerns. She encouraged questions and provided prompt answers. She returned my phone calls, often on the same day that I left her a message. And she was working behind the scenes and putting an excellent team in place for me. She landed a great surgeon, steered me toward a fantastic medical oncologist and radiation oncologist. These top-level professionals all worked tirelessly to save my life, but they didn’t treat me as if I were a mere patient.

They treated me like family.

And they were all HMO doctors.

(In a future blog, I will dispel the myth that all HMO doctors are bad.)

And even though I had a medical team of specialists who were unbelievably outstanding and kind — like off-the-charts brilliant and sweet people — I probably wouldn’t have crossed paths with them, had it not been for my gateway doctor, whom I have called my guardian angel.

So now that I’ve waxed poetic about my gateway doctor, here are some litmus tests that can help you find the doctor that’s right for you. These tests also apply to specialists, but you need a great PCP in place before you can even consider a specialist.

You’ll need to set up a routine exam, perhaps with several doctors, to find the right one so please be patient.

Litmus test one: During your meeting, give an emotional prompt, like: “I’m afraid of blood tests.” Observe the doctor’s reactions. Is he/she emotionally vested in you? Reassuring? If not, find another doctor.

Litmus test two: Sometime in the week following your exam, call the doctor to ask a question. Does the doctor call you back promptly? Does he or she communicate with you clearly and patiently? Does he or she take your concerns seriously? If the answer to any of these is “no,” find another doctor.

Litmus test three: Based on litmus tests one and two, do you LOVE your doctor? If you are feeling badly about him/her or just so-so, find another doctor. Don’t settle for mediocrity because if there were a medical crisis, a doctor you love and who cares deeply about your welfare will be the one who fights for you.

Litmus test four: Does the doctor play “ring around the patient,” where he/she continuously throws statistics to impress you with his or her know-how? Does he/she come with print-outs of pages from the Internet to illustrate these statistics? Do you feel confused during and/or after the session?

Run – do not walk – away from this doctor.

Litmus test five: Does the doctor use scare tactics, telling you all the terrible things that can happen to you? Is he/she dismissive of your emotional and physical needs? Does he or she sound like a doctor who has watched too many ER or Grey’s Anatomy episodes? If so, this is not the doctor for you.

All in all, trust your instincts and be persistent in your goals to find a great doctor. You will know whether a doctor is a good fit for you. Also, if you suspect something is wrong and a doctor does not give you a satisfactory answer or solution, then continue advocating for yourself. Don’t accept answers like, “You are too young to get cancer.”

Demand to be treated with respect and, if need be, be difficult to those who treat you unfairly. You have an amazing power to demand to be treated with respect – whether from doctors, nurses, and office personnel. If someone treats you with disrespect, such as rudeness, talk back.

You are nobody’s doormat, and they need to know it.

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This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

A Patient-Centered Bill of Rights

Posted on: April 3rd, 2009 by
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Too often, patients are confused by the language of various Patient’s Bills of Rights because the language is often convoluted and confusing. It’s hard enough to be a patient, so reading through muddling language only adds anxiety.

So, in my Fantasy World of Medical Advocacy, here’s my version of what a Patient’s Bill of Rights should look like:

Patient’s Bill of Rights

1. You have the right to be civilly disobedient with any medical personnel who you perceive does not have your best interest at heart.

2. You have the right to hire and fire doctors at will.

3. You have the right to question treatments without a doctor being condescending to you.

4. You have the right to understand that you are on equal footing with a doctor because you are both human beings with comparable self-worth.

5. You have the right to truly collaborate with excellent doctors you trust and who truly have your best interest at heart.

6. You have the right to a voice in your own medical care.

7. You have a right to have doctors return your phone calls on a timely basis.

8. You have the right to follow your gut instinct and not allow medical people to manipulate you into ignoring it.

9. Whether you are incapacitated, in the hospital, or extremely sick, you have the right to speak up in any medical settings.

10. You have the right to choose your medical destiny to whatever extent possible.

11. You have the right not to be bullied or badgered by anyone — from receptionist to doctor — at any time.

12. You have the right to being treated with respect and to employ civil disobedience if you are being bullied, badgered, and disrespected in any way. In short, say “no” to thugs.
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This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

Don’t Be Complacent

Posted on: March 27th, 2009 by
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If you have a medical concern, please get it checked out as soon as you can. This is a simple idea, but it is one of the hardest things we can ask of ourselves.

We may not follow up immediately on a medical concern because we are afraid our worst nightmares will come true. It’s much easier to lull ourselves into a false sense of complacency — that whatever we are worried about is a figment of our imagination, or that we are just hypochondriacs afraid to waste a doctor’s time with false alarms.

The truth is, it is easy to choose complacency when we are afraid. This is our default reaction to potentially disturbing news.

I chose two weeks of complacency after I found a very subtle dimple on my right breast during one of my routine monthly breast exams. During these two weeks, I had no peace. I kept telling myself that I wasn’t really seeing anything. Wasn’t that dimple always there and I failed to notice it? Wasn’t it just a mirage?

Then I would cry for hours, convinced it was cancer. Then I remembered that a recent mammogram was negative and my gynecologist had given me a clean bill of health months prior. He did the breast exam and found nothing, I reassured myself, so I was just fine.

Besides, a doctor told me I was too young for cancer. I was fit and had a healthy lifestyle. I was becoming jubilant over my self-imposed diagnosis of “healthy,” when a fear overcame me.

What if it really is breast cancer?

My first instinct was to tell myself that ignorance is bliss. The idea of having cancer was too terrifying to imagine. But when it comes to a possibility of any life-threatening condition, the whole ignorance-is-bliss mantra is a lie.

I realized that I had no choice but to investigate it. If it weren’t cancer, my mind games would stop and I’d be reassured. If it were cancer, it would kill me if I just ignored it. At least being proactive would give me a shot at living.

So I made an appointment to see the gynecologist, who, still unconcerned and who had trouble even finding the area in question, wrote me a prescription for a mammogram at my hospital’s breast center, just to be on the safe side.

Turns out, it was cancer.

And that’s when I first learned the power of self-advocacy. Despite the harsh treatments and future surgeries, I am alive now — and blogging up a storm — because I opted to be proactive.

Some people believe that “courage” is defined as “being fearless.” I disagree. To me, courage means being afraid and acting anyway, even if that means facing the darkest of truths.

Through my breast cancer journey, I realized that I am very courageous, but I realized that this is a true quality of ordinary people like me — to do extraordinary things that are often the unthinkable.

So if you or a loved one has a medical concern, call the shots and get it checked out. It may just save a life.

Beth L. Gainer is a professional writer and has published an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She teaches writing and literature at Robert Morris College in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com. She also blogs on the adventures of her cats, Hemi and Cosette, at http://www.catterchatter.blogspot.com/.

This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.