A Train Car Named Quagmire

Posted on: April 15th, 2009 by
2

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.

Photobucket

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
6

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.

Photobucket

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
2

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.
Photobucket

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
4

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.

Courage in Stories

Posted on: March 20th, 2009 by
2

Kudos to a recent Oprah show, which profiled four celebrities: Fran Dresher, Scott Hamilton, Magic Johnson, and Montel Williams — each who are or have been grappling with serious medical conditions.

What struck me was these individuals’ candor and willingness to tell their stories. And as they shared their experiences, their faces of celebrity faded, only to be replaced with the face of humanity, gratitude, and humility. I watched, transfixed, and was really shocked at Scott Hamilton’s revelation that he had recently been diagnosed with a brain tumor. He expressed his gratitude for being able to be on this Earth for as long as he has.

In his Fairfield Citizen article, “In the suburbs: Winning the battle at all costs,” Steve Gaynes eloquently describes this particular show. (See the link at the end of this blog.) Like Gaynes, I found Dresher’s words inspiring: “‘Sometimes the best gifts come in the ugliest packages.'”

During my fight against breast cancer, I bore witness to the ugliness of illness. During hours in chemotherapy, I had a lot of time to think and reflect about my life. I was just focused on doing all I could to fight for my life. Cancer survivors would tell me that I might not feel this way now, but one day I might consider this illness a gift.

I was, like, “huh”?

So when hearing the celebrities’ stories on Oprah, I realized that these individuals are speaking from a perspective different than one who is just diagnosed. Their points of view only come after years of reflection about their plights.

Eight years after my diagnosis, I, too, now see that cancer was, indeed, a gift — a gift I didn’t want in the first place — but a gift nonetheless.

Because until I realized what it was really like to be ill, I took life for granted. I now do my best to appreciate each day and know how precious the world and my loved ones are to me. I still throw pity parties and still have to deal with the medical aftermath of my battle.

But I consider myself blessed, humbled, and very human.

http://www.fairfieldcitizenonline.com/columnists/ci_11957992

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.

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.

Calling the Shots in Your Medical Care

Posted on: March 14th, 2009 by
2

This blog-form column is designed to encourage and inspire people to take the reins of their own medical care. Whether you have advocated for yourself or a loved one, or you want to know tips on how to do so, this blog is for you.

I became a self-advocacy expert when I was diagnosed with breast cancer in January 2001. The road toward health has been fraught with difficulties, setbacks, losses, and suffering. But I am grateful to be alive and loved — and to have a platform through which I can help others.

Every person who is diagnosed with any medical condition is unlucky. In particular, the “C” word in particular still fills people’s hearts with dread.

In some respects, I was especially unlucky when I was diagnosed with breast cancer. At a relatively young age, I suffered through a lumpectomy, chemotherapy and radiation, constant medical testing, a few false alarms, and eventually a preventive double mastectomy with reconstruction. I had also become infertile as a result of the treatments. The ironic part of it all is that I was in excellent shape and fit.

But despite my diagnosis, I was also lucky: my cancer hadn’t spread, I had excellent doctors, and I had the best advocate in the world – myself.

Through self-advocacy, I caught my own breast cancer, prevented a recurrence, and ensured I received top-quality HMO medical care. Before my breast cancer diagnosis, I knew nothing about interacting with doctors and self-advocacy. Sure, I had routine exams, but like most people, I was intimidated by doctors and believed everything they told me. I was not immersed in the medical world. My breast cancer experience would change all that.

In my self-advocacy journey, I have taken actions that were unthinkable to my pre-cancer self: hiring and firing doctors, asserting my needs to medical personnel, scolding difficult medical staff – and in one instance allowing everyone on a train car to know my sordid, private medical details! (Curious? Stay tuned for a future blog.)

This blog will offer tips on how to advocate for your medical needs. Regardless of your condition, situation, prognosis, or ultimate outcome, too much is at stake to allow organizations and medical personnel to intimidate you and fully determine your fate.

You are the one who can call the shots in your own medical care.

During my public speaking engagements, people often ask my advice on how to find the right physician, what to do if they are unhappy with their doctors, or how to handle being dismissed by medical personnel. When others find out I advocated for myself, they want to talk with me about this topic. People need to know how to advocate for themselves.

Although you cannot always control your medical situation, remember this: you are the driver of your medical care, not a passenger.

When it comes to self-advocacy, you call the shots.

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.

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.