Retooling

My blog has shared strategies for self-advocacy and navigating through the medical system. Part of my advice has included how to stay calm in the waiting room by thinking of 10 positive, empowering words to describe yourself, as well as bringing an arsenal of tools to help people cope with waiting in the examination room.

Well, this week, I should have taken my own advice and printed out those 10 words. This week I should have brought the words with me to my back-to-back doctor followup appointments.

But this week I allowed the dark side of my mind to take over.

 I chose to allow fear to possess me. Even though the doctor's appointments went well, I had all these catastrophic thoughts and flashbacks to when I had cancer, treatments, and surgeries. In fact, my throat closed up and I found it difficult to breathe. My hands were shaking.

I was having a panic attack.

I could've used those 10 empowering words, and I wonder, why I didn't take my own advice from Re-examining the Examining Room Wait? Why did I leave my music, sketching pad, pencils, and journal at home? Why did I choose to embrace fear rather than fighting it?

I don't have the answers, really, except that I'm human.

Like any patient, I can be frail and fail to deliver on self-empowerment. The part that gets me is that I know these self-empowerment strategies work; I have used them countless times. Yet, I did not even think about using the tools I had in my toolbox.

That's worse than having no toolbox at all.

The tools for coping with doctor's appointments were in my very hands, but I let them slip away, inviting panic instead.

I have a bone scan toward the end of this week; this test will assess how much bone I am losing or gaining. The chemo and a variety of meds leached a good amount of bone over the years, so going through this test is psychological agony for me. The test is physically easy; it's the fear of bad results that is hard.

For this test, I am retooling: I am taking control by retooling to filter out the fear. I am bringing the list of 10 empowering words, as well as a variety of tools to help me cope while I wait to get the bone scan.

Readers, when has fear taken over your mind relating to a doctor's/diagnostic test appointment? How have you handled it -- the good, bad, and ugly? I would appreciate your sharing your thoughts.

This posting is an excerpt from my upcoming book, Calling the Shots: Coaching Your Way Through the Medical System. To obtain these excerpts regularly, please subscribe to this blog by clicking the orange subscribe button. I am a professional writer and have published numerous academic and magazine articles, as well as an essay on my breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. I can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

Getting Doctors to Write Notes On Your Behalf

The doctor's note.

It seems everyone needs at least one at some point, whether it is a letter telling an insurance company that you need to see an out-of-network specialist, informing an employer to make reasonable accommodations for you so you can work in spite of your medical condition, to prove you are in good health and able to work or adopt a child, and the list goes on and on.

You can have doctors write them, you can dictate to doctors what you want the letters to say, or you can ghost write them.

I should know. I've done all three.

Yes, you can be savvy. And resourceful. And clever.

All you need is an ethical, excellent doctor who supports you, and will do anything within reason for you. There is a caveat, though: the doctor and you should be honest and ethical about your condition/circumstances. Ethical, excellent doctors do exist. You just need to find them. Or perhaps you're lucky enough that you already have one or more.

This posting is NOT about deceiving others so you can benefit. Getting a doctor to write a note saying it's medically necessary to get a procedure when it really is not medically necessary is not my idea of ethical advocacy. Sure, I would like my skin under my chin to be a bit less droopy, but getting a doctor to write a note that it's medically necessary for me to get plastic surgery would be unethical. (Besides, I love my physical imperfections.)

This posting is about a letter telling the truth in a way that will best advocate for you.

For example, many years ago, as a result of intense keyboarding, I developed carpal tunnel syndrome. My left hand was in agony and swelled up like a watermelon. OK, more like a cantaloupe. I knew I could still work at the company, but the intense keyboarding had to stop for my own health. I saw a hand surgeon, who agreed. So I went out of my comfort zone and asked him if he would support me and write a letter saying that I needed to make a lateral move to a position that required less keyboarding, and he said "yes"! I dictated the letter to him, and I got my wish. My hand healed, as a result. The letter was honest; all the doctor needed was for me to tell him what I needed the letter to say.

For example, when I was fighting to get my double mastectomy with reconstruction, I needed lots of letters telling other doctors and the insurance company that I needed this procedure and I needed certain doctors to perform it. My oncologist and primary care physician completely believed I did need this surgery, as did I. They wrote many letters on my behalf, some of which I contributed to. The letters were honest; it turns out that a biopsy taken during the surgery revealed that I had many precancerous cells and would've likely had a breast cancer recurrence, indeed, if I didn't have the surgery.

In many other instances, I ghost wrote letters for my doctors. If you can basically put a sentence together and your doctor is great, ask him or her whether you can write the letter and have him/her read and sign it if he/she agrees with it.

This last point sounds super gutsy, but in reality, with a great doctor, it's relatively simple. Doctors have professional e-mail addresses, and you can e-mail the letter, and he/she can read it over for accuracy and make whatever changes are needed. Then your doctor prints it out on letterhead, signs it, and sends it to you or the party who is supposed to receive it.

This is a win-win scenario, as you get to control most of the letter's contents, and you've just made life easy for the doctor, who is generally super busy and wants less paperwork.

You really don't know how much a doctor is willing to advocate for you in writing unless you ask.

Just ask.

Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about a potpourri of topics, including motherhood and her Chinese adoption experience at http://currents-living-discovery.blogspot.com/, and her cat Hemi blogs at http://www.catterchatter.blogspot.com/. Beth teaches writing and literature at Robert Morris University in the Chicago area. She has a guest posting on The World's Strongest Librarian at http://worldsstrongestlibrarian.com/3597/sharing-a-loved-ones-pain-guest-post-by-beth-gainer/.She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

Peek-a-Boo I C U

I C U. Intensive Care Unit. It's intensive, alright. But it's not a care unit.

On regular hospital floors, during the day, quality staff are available. It's "showtime" at the hospital, where relatives and friends of the patient get to see how caring, nurturing, dedicated, and loving the doctors, nurses, and their staff are. Nighttime at the hospital is quite another story.

Nighttime in ICU is a nightmare.

If you are going to spend time in ICU, I strongly suggest you have someone you know and trust be there all night to advocate for you. Insisting that you have someone there during the night won't win you popularity contests, but it will help ensure that you can avoid the trauma of the very unit that is supposed to take care of you.

After my double mastectomy with reconstruction at a hospital with an excellent reputation, I spent two consecutive nights in ICU, nights so horrific, that I think I could make a living selling t-shirts that say, "I was in ICU, and I lived to tell about it." 

The first night, all night long, a young, inexperienced nurse kept forgetting to check on me at the intervals the doctor had ordered. To make matters worse, even though I was trying to mend physically and psychologically, the nurse kept telling me about each ICU patient's condition. I'll spare you the gory details, but she eventually whispered in my ear, "You're the lucky one. You are the only one getting out of here alive."

At least she whispered. The ICU staff in an adjacent room were singing audibly about one of the unfortunate patients who probably wouldn't make it. I cried, thinking of that person, laying there -- as I was laying there, strapped in -- with a mocking song being the last thing he or she would hear.

By daylight, the smoke screen was back. 

The loving, sweet staff returned by 8 a.m., just in time to give visiting families and friends the show of their lives. When my family brought up my complaints, they were assured that I was delirious from all the medication and that I was exaggerating. I also told my doctors about the things I heard and saw, and they were concerned and complained to the ICU staff about various mistreatments. I was proud of myself: I advocated for myself and would receive better treatment that night.

Or so I thought.

The second night was worse. I woke up in the middle of the night, parched with thirst, and in near-total darkness. My bed was moved into a dark corner, and I was afraid. I called out for someone to please get me water, but to no avail. I begged for water non-stop and begged for someone to come by and help me because I was now afraid that I would die of thirst. I kept begging for help.

Nobody showed up until dawn.

Had a friend or relative been there that entire night to advocate for me, I could've taken a break from begging and allow my companion to do the dirty work. 

The day after the I'm-Dying-From-Thirst-But-Nobody-Showed-Up-Last-Night episode, I told my surgeon what happened. He decided it was detrimental for me to be in ICU any longer, so I was moved to a far better unit, one without the words "Intensive Care" in it.

Whatever hospital unit you are in, I really cannot emphasize enough the importance of having an advocate -- someone you know and trust -- staying overnight with you. If I could rewind back to that time period, I certainly would have done so.

Three-plus years after this trauma, I am still unsettled. But if my experience will help at least one person have an advocate by his/her side during hospital nights, it would make my suffering have more meaning.

Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about a potpourri of topics, including motherhood and her Chinese adoption experience at http://currents-living-discovery.blogspot.com/, and her cat Hemi blogs at http://www.catterchatter.blogspot.com/. Beth teaches writing and literature at Robert Morris University in the Chicago area. She has a guest posting on The World's Strongest Librarian at http://worldsstrongestlibrarian.com/3597/sharing-a-loved-ones-pain-guest-post-by-beth-gainer/.

She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

Breast Cancer Awareness Year

While Breast Cancer Awareness month has come and gone, it is really vital that people be aware of this devastating disease year-round. Breast cancer affects everyone because, although the majority of its victims are female, the disease is also devastating to husbands, fathers, sons, and any man who has a woman in his life. And one out of 100 men get breast cancer, too.

And so, here are my tips for year-round health-care vigilence. Some have been stated before in my previous blogs, but one cannot emphasize them too much. So, here they are:

• Do a breast self exam every month. This includes not only feeling for lumps, but doing the "mirror test," which is where you look in a mirror, raise your arms and look at your breasts to ensure there are no unusual flags, such as dimpling, puckering, inverted nipples, etc. It was the mirror test that saved my life.
• If you find something unusual, even if you don't think it's a big deal, get it checked out as soon as possible. It's better to have it checked out and it be nothing than not to check it out at all.
• Fire any doctor who tells you that you are too young, too old, to nice, etc. for cancer. They are not taking your concerns seriously.
• After a mammogram, ask the technician and the radiologist if your breast tissue is dense. If the answer is "yes," then it's most likely difficult to see any possible abnormalities. Go to your primary care physician, or your gateway doctor, to get an order for an MRI or ultrasound. 
• Eat right and exercise. Healthy living really doesn't prevent cancer, but it does help promote good mental and physical health. And that's always a good thing.

Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about a potpourri of topics, including motherhood and her Chinese adoption experience at http://currents-living-discovery.blogspot.com/, and her cat Hemi blogs at http://www.catterchatter.blogspot.com/. Beth teaches writing and literature at Robert Morris University in the Chicago area. She has a guest posting on The World's Strongest Librarian at http://worldsstrongestlibrarian.com/3597/sharing-a-loved-ones-pain-guest-post-by-beth-gainer/.

She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

A Train Car Named Quagmire

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.

The Gateway Doctor

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.

A Patient-Centered Bill of Rights

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.

Don't Be Complacent

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/.

Calling the Shots in Your Medical Care

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.