Who’s Afraid of the Big Bad Medical Administrator?

Posted on: May 6th, 2009 by
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Answer: Not the patient.

As covered in previous blogs, when navigating the medical system, bully/incompetent doctors are just one of the many hurdles you face. Other huge hurdles that we patients face include those administrators whose job, it seems, is to make life difficult for us.

As if dealing with illness and life-threatening conditions weren’t enough.

I am beginning this posting with a caveat: most of the medical staff I’ve encountered have been helpful and kind. Most of the time, my doctor visits have been made more pleasant and relaxing — all because of the administrative staff — such as receptionists, medical assistants, records people — who do have a difficult job and often have to deal with rude patients.

However, it’s more fun for readers if I trash the administrators who have overstepped their bounds.

And more than anything, I’m hoping that this posting can help you stand up to rude administrators who seem bent on placing hurdles in your way or being rude and inappropriate during your visit to the office. I speak from experience and will discuss two memorable altercations I had with administrative bullies.

Ironically, I’m grateful for these experiences because they taught me the incredible power patients have.


Show Me the Money

When dealing with a potential or existing medical problem, the last thing you need to hear is a medical staff member discussing money matters with you. This type of insensitivity to your needs is unacceptable.

In my case, I was in my surgeon’s waiting room only a few days after being told that an MRI revealed something suspicious, and I was scared — like crap in your pants scared — that it was a recurrence. Fresh in my memory was my great friend dying of breast cancer only a few months before, and I was deep in thought, wondering if I would share the same fate. My surgeon was going to examine me and schedule a biopsy.

The receptionist interrupted my panic-stricken what-if scenarios by calling me up to her desk. Imagine my disbelief when she looked in my tear-reddened eyes and informed me that I owed some money and would I like to pay it now or later. She started talking in a not-so-low voice about the amount I owed. In shock, I stammered something about being billed later. I couldn’t psychologically deal with one more stressor.

I sat back down, crushed. I was embarrassed, wondering if others in the waiting room overheard this conversation. The tears of humiliation stung my sleep-deprived eyes.

Then my fighting spirit took over. I wanted my dignity and self-respect back. I walked back to the receptionist and told her in a not-so-low voice, “You know, I am grappling with a possible breast cancer recurrence, and I can’t believe you have the audacity to discuss my bill at a time like this!” Before she could stop stammering, I added, “You and anyone in your office are never, ever to discuss anything bill-related with me in this office.”

Now it was she who was crushed. I turned around abruptly and got back to thinking my fate. She and the rest of the administrative staff treated me like gold that day. One would think I was a celebutant. And I felt empowered, even though I was bracing for terrible news.

The Dreaded Record Keeper

In my posting A Train Car Named Quagmire, I discuss how I fought to get records transferred from one physician’s office to another. Records departments simply amaze me. They are able to provide services and obtain records lickety-split when a doctor requests them, but not when a patient does.

In my case, the enemy was the center where I had follow-up mammograms and any pre-surgery labwork. Interestingly, whichever individual happened to be at the front desk was always rude and cold to me. I found it intimidating and passively tolerated their mistreatment and utter disrespect. Luckily, the technicians were nice, but the technicians unfortunately had nothing to do with ensuring records were delivered when they were supposed to be delivered.

My mammogram films and report were supposed to be ready for me to pick up before I saw my doctor who always wanted to see them during my visit (I did call the records department ahead of time and followed all the protocols). Yet, about 50% of the time they weren’t ready, and I had to go to the doctor sans mammogram, which arrived a few days later.

And for someone who has been through a cancer experience, waiting a few days is like waiting an eternity.

I called the center to complain about the mishandling of these mammograms and, after speaking to several impolite personnel, I finally got a friendly staff member. I told her that since I already had breast cancer and very dense breast tissue, my mammograms needed careful inspection by my surgeon on time and that such mishaps could one day cost me my life.

She said, “Aw, honey, you’re not likely to get breast cancer again.” I volleyed back: “How do you know that? You can’t tell a patient that! It is vital that your office ensures prompt and accurate delivery of my mammogram films and results.” (Turns out that years later after my preventive mastectomy and reconstruction, the labwork indicated I had oodles of precancerous cells and would’ve had a recurrence in a few years.)

I asserted myself to my surgeon — I politely insisted that, with my history of breast cancer, it wasn’t prudent for me to to get follow-up mammograms at an unreliable place and from now on, I wanted my mammograms done at the hospital’s far superior breast center. The stakes were too high, I explained, to allow this center to determine my medical fate.

He agreed, and I never had such problems again. Victory!

Fast-forward a few years later. I needed to go to this center for pre-surgery bloodwork. I was getting my preventive double mastectomy with reconstruction, so it was a stressful time for me. My doctor sent the center an electronic referral so I wouldn’t need a hard copy. So I showed up a week before surgery, as directed, without a hard copy referral.

By now I was prepared for the staff’s lack of respect, and I was determined to not tolerate abuse.

Sure enough, the receptionist rudely insisted I needed a hard copy referral — even though she had printed out the electronic version! She rudely directed me to an intake person at another desk, who coldly said the center couldn’t do labwork without a hard copy referral.

I told her that I was having major surgery in a week and needed the labwork ASAP. She responded that the center would do the labwork, but only if I signed a form agreeing to pay for the procedure should my insurance not cover it because the referral was electronic.

(No, it doesn’t make sense to me either.)

She shoved the form toward me, and that’s where my civil disobedience kicked in. I told her, “You know, every time I come to this office, I am treated rudely and with disrespect. I demand respect. I am having major surgery next week, and I followed the correct protocol. So I refuse to sign it.”

Her eyes widened in shock, and then she scribbled something on the form. I asked her what she was writing, and she said “Patient refuses to sign form.” Pleased with my self-advocacy, I said, “Good!”

I got my bloodwork that day and didn’t pay a cent.

When I relayed this interaction to my friends, they said they never knew they could refuse to sign such a form.

Well, now they — and you — know. While we want to be civil and treat medical staff with respect, when we find ourselves bullied by them, we don’t have to passively comply.

Your voice needs to be heard, and you simply cannot tolerate disrespect from administrators.

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 Illinois 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.

Survivor’s Guilt

Posted on: May 1st, 2009 by
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This is how the story goes:

I had a friend around my age. She died. I lived.

I lived because she died.

Faun and I became fast friends, well, fast. We met at a breast cancer survivor’s group, and even though I was the newbie to a well-established group, she and I hit it off. Turns out she was a teacher and a writer. Like me. And she was from the East Coast. Like me.

And she was a breast cancer survivor. Like me.

Or so we thought. Five months after we met (and five months after my last chemo treatment), she experienced a recurrence. Well, that’s not exactly accurate. The cancer had never really gone away in the first place.

I’ll spare you all the gruesome details, but I took her to chemo regularly and was there for her — until the very end, about four years later. Ironically, those chemo days were good days for us as friends. We had hours to talk, and then I brought her home, sat on the edge of her bed, and we laughed and shared secrets for a couple of hours.

We even had plans to compile an anthology of essays and poems by a variety of people who’ve had breast cancer. And, of course, we’d contribute our work to the anthology. We would brainstorm regularly about how this book would evolve. Our dream of collaboration never happened, though.

She died July 3, 2005, at the age of 47.

Yet, she saved my life.

You see, six months after she died, my oncologist called to tell me that my MRI revealed something odd in the same breast in which I had breast cancer five years before. He was understandably very concerned. I was understandably very panicked.

I got an ultrasound and biopsy and had the abnormality removed. As I waited for the lab results, which seemed like an eternity, I became obsessed with all of what Faun went through. I wondered if dying young was something else we both would have in common.

During this time, I did some serious thinking that If I could get another chance at life — if I could do it all over again — I would get a double mastectomy instead of the lumpectomy I chose at diagnosis. I decided then and there that I would get a double mastectomy, no matter the outcome. Even if I never got a recurrence, I reasoned, the constant scares and mammograms did a number on my psyche. I thought of the rock group Boston’s words: “All I want is to have my peace of mind.”

I remember when the biopsy results revealed that the “abnormality” was benign — simply scar tissue. I felt a tinge of happiness, but it was mostly fear. I knew if I didn’t get my “evil twins” removed, I would get breast cancer again. I just knew it. Something was telling me that breast cancer would once again be in my future.

Fast forward to all the doctors I hired and fired and drama and trauma in order to get the double mastectomy, the topics of previous postings. After an 11-month battle navigating through the medical system, I finally found myself happily in the OR with a gaggle of doctors ready to remove my breast tissue and reconstruct my breasts from my post-menopausal belly fat.

The next time I saw my oncologist, he beamed from ear to ear, telling me that the double mastectomy was the right thing to do becauseI had many precancerous cells in my supposedly healthy breast. I most likely would have gotten breast cancer again in a few years.

I asked him, “So, I avoided death twice?”

He responded, “Yes.”

Had I not seen what Faun went through, I might not have been so proactive and insistent on the double mastectomy. Her suffering and death had anchored itself in my mind and kept me fighting for the surgery.

Now, about two and a half years after my surgery, I still get back pain and have residual aches, but I refuse to feel sorry for myself. I refuse to be a whiner. I refuse to be a complainer. Oh, I have my moments, but I know each day is a gift.

I have recovered and gotten a clean bill of health. I’m grateful to be alive. At the end of this week, I am flying to China to adopt my baby daughter. And Faun’s dream has lived on in me: I have been published in an anthology focusing on breast cancer.

Yet, I will always feel survivor’s guilt. I do wonder why Faun died and not me. Don’t get me wrong: I’m glad I survived, but at the same time, I feel guilty that I feel glad I survived.

But then I think that perhaps her spirit is watching over me, that perhaps she’s my guardian angel who takes pleasure in knowing that I’m bearing the torch that is keeping our dreams alive.

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.

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.

Read More About this Post Here

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.